1

Welcome (1)





2

Gentle Pass Times (2)


This presentation is intended
as a guideline for hospice volunteers
who wish to learn more about how to
companion mindfully with those
who are actively dying.

None of the guidelines mentioned in
this presentation are hospice specific.

You are advised to follow the rules and
regulations of the hospice that you
are volunteering for.
3

Gentle Pass Times (3)

The title slide plays a lullaby to help people get centered and as an introduction to the training.
The song Lullaby was written by Cris Williamson.
I share this lullaby with almost every person for whom I offer transition care.
It is not only sweet and beautiful, but it also seems so very appropriate for a person who is dying.


The Lyrics to the lullaby:


Like a ship in the harbor,
Like a mother and child,
Like a light in the darkness,
Ill hold you a while.

Well rock on the water,
Ill cradle you deep,
And hold you while Angels,
Sing you to sleep.

CHAPTER ONE (4)

Contents:

Topics (slides 5 & 6) pg. 5-6

What is transition care? (slide 7) pg. 7-8

What to bring (slides 8 & 9) pg. 9-11

General knowledge (slide 10) pg.12-15

Patient specific information (slide 11) pg.16-18

Introductions pg.19-24

Introductions at a facility (slide 13) pg. 20

Meeting the patient and loved ones (slide 14) pg. 21-23

Physical introductions (slide 15) pg. 24

Working with staff members (slides16 & 17) pg. 25-27

5

Topics (5)


What is transition care?

A description of what transition care is; what it constitutes and what is expected of you.


What to bring/what to know

This chapter contains practical information of things to bring and/or know when providing
transition care and why.


Introductions/Working with staff members

Different types of introductions are discussed and how to collaborate well with staff members at
facilities as well as hospice staff members.


The intensity of people

You enter into a patients life at a very crucial and often stressful time.
This chapter discusses some of the many possibilities and factors that may influence the
behaviors of patients as well as those of loved ones.


What kind of questions can you expect?


You may encounter people with an array of questions; whether they are from patients,
loved ones, or staff members at facilities. Some of the questions I have encountered most in my
journey as a transition care volunteer are mentioned here as well as the possible reasoning behind
them. Thus you will know what to expect.


Signs and symptoms of dying

We will discuss the signs and symptoms of the dying process so you will know what to expect
and provide you with a solid basis to guide the patient and loved ones when needed.
Keep in mind that every patients journey is different that not every patient may necessarily
display the exact same signs and symptoms.
6

Topics (6)

What can you do for a patient?

This chapter contains practical suggestions and ideas of how to support patients and how to
strive to keep them as comfortable as possible. It also discusses how to advocate for patients and
how to handle delicate situations.


What can you do for loved ones?

This chapter contains practical suggestions and ideas of how to support loved ones and how to
strive to keep them as comfortable as possible. It also discusses how to handle delicate situations.


Children and pets

When children are involved, a slightly different approach may be helpful than when you are
dealing with adults only. Some options are discussed as well as the question whether the
presence of a pet is appropriate.

Restless patients

Some patients may appear restless as death draws near. In this chapter we will discuss some of
the possibilities of reasons for restlessness in a patient who is actively dying. Some of the topics
included are: unfinished business, fear of the unknown, last hoorah, terminal agitation, near
death awareness, Alzheimers disease, restlessness in veterans and post traumatic stress disorder.

What NOT to do

There are some definite No-Nos when it comes to providing transition care.
Sometimes it is hard to find that boundary because we are kindhearted people and we are so very
willing to help. Crossing those boundaries however, may hold some serious consequences.
Listed are some pitfalls that are out there


When the patient dies

Practical information on what to do, who to contact and how to support loved ones.

The importance of self care

Self care is so immensely important! It helps you stay healthy in many ways so here Im
mentioning some suggestions on how to protect yourself from caregiver burnout.
7

What is transition care? (7)

Support at the END of life

When you get a request to provide transition care, it means that the patient is now actively dying
as opposed to being terminally ill or elderly. Most patients die within hours to days.


Patient is often unresponsive

Patients who are actively dying may be in varies stages of the dying process.
Although the patient may be completely lucid, in and out of consciousness, he or she may also be
unresponsive.


Patient may die within hours to days

Depending on when the hospice calls you, the patient may die anywhere between hours to days.
Since the dying process is such a personal journey, it also may happen before you get a chance to
get there. Some patients may be alive for quite a while still, others die fairly quick.

A factor that influences the timing of when you will get a transition care request is whether the
patient and/or loved ones are ready for a volunteer. It is a very scary and intimate process for all
involved and so sometimes a nurse or another staff member will put in a volunteer request early
in the process and sometimes, it may be fairly late.
The staff member can only suggest that the patient and/or family make use of a volunteer but
ultimately it is up to them whether to accept the offer or not.


Patient may die while you are present

Since the patient is actively dying by the time you get called in, there is a good chance that the
patient will die while you are with him or her. A lot of people are a bit hesitant about whether
they can handle such a situation and that is completely normal.
Every death is different and every situation is different. Therefore, you may discover that
attending a death is not for you or you may just find yourself a new calling!
Death is not always pretty but within hospice it surely can be made into a journey that is still a
tragic event, yet we may be able to provide dignity, comfort and healing for all involved.

8

Support for the patient

As a transition care volunteer you may serve as an incredible form of support for the patients you
visit. Sometimes just your presence means the world to people who are on the brink of death.
Support comes in many forms so later in the presentation we will discuss some ways of how you
can be of help.

Support for loved ones
Loved ones are often under a tremendous amount of stress and pressure and they often truly
welcome a transition care volunteer. They overall will follow your calming energy and are
grateful that someone is there to support them and who can prepare them for what is to come and
guide them through. You may be alone with a patient sometimes so loved ones can take a break,
or in some cases there are no loved ones involved.

Many emotions may be involved
The patients as well as loved ones are on a pretty intense journey that encompasses past, present
and future and therefore many emotions may be involved. Key is to recognize this with
understanding, compassion and respect and to navigate very delicately. We will discuss some of
the emotions that you may possibly encounter later in this presentation.

You are the eyes and ears for hospice
In the capacity of a volunteer, you may have the ability to spend more time with a patient than
the average team member which gives you a huge advantage as to be able to gauge how the
patient and loved ones are doing.
This means that when necessary, you can contact hospice and put in requests from the patient
and loved ones and/or you can pass on any other information that may be relevant to the care
team in order to provide optimum care.
In private care as well as in the care a patient receives at a facility, you are also in a position to
observe whether the patient is receiving proper care and act as an advocate for the patient by
contacting hospice should you observe otherwise.

Incredible gift
Transition care volunteering is a trifecta of gifts:

1) It is and incredible gift to the patient and loved ones to have guidance and support when
needed.

2) It is a gift for hospice because it helps provide optimum care for those who would benefit
from transition care and it helps build the volunteer hours as required by law.

3) It is an incredible honor and gift to you, the transition care volunteer as it brings
a tremendous level of growth and fulfillment.

9

What to bring: (8)

Be dressed properly

Discreet, comfortable, professional.
Adhere to the dress code of the hospice
you serve with and utilize common sense.
Also, remember that most facilities
keep the temperature up pretty high
and on the same token: keep in mind
that if you go in late afternoon,
that there may be a temperature
drop outside by the time you go home.

Badge - Always bring your badge, it identifies you as part of the hospice team and patients and
loved ones can see your name. They have a lot to deal with and sometimes get embarrassed if
they have to keep asking.

Patient information and appropriate phone numbers - I request the facilitys phone
number so that, depending on when my services are requested, I can call ahead and make sure
that the patient is still alive and to let them know when to expect me.

I also inform the hospice and the facility if something has come up which prevents me from
arriving in a timely matter. The same goes for calling the patient and/or loved ones at a private
residence. If you ever are running late r have arrived later that expected always report this to
hospice.

Depending on the manner that the hospice you serve with expects you to file your documentation
it may be helpful if you carry their documentation forms with you. Make sure that you carry the
appropriate phone numbers for hospice with you as well.

Whether a patient lives at a facility or a private residence, it may be smart to MapQuest the
correct address before you go on your visit.

Disinfectant - I carry some disinfectant in my bag as not all facilities offer this designated for
community use. The same goes for private residences. Proper use of disinfectant makes you
come across more professional because you observe universal precautions and you come
prepared.

Bottle of water - Bring a bottle of water or something else you may want to drink.
Sometimes there isnt anything available, or you may find yourself at a place where you do not
necessarily would WANT to make use of what is available. Overall, you will be fine but better
safe than sorry. I carry some hard candy for the same reason mentioned above but also just in
case I may need some sugar.

10

A note pad and a pen - I carry these just to make notes if needed. Sometimes a situation
may get hectic and if you write down important things along the way, you cant forget them
later.

Open heart and energy - come from loving compassion, devotion and respect.




11

(9)

A book - This is an excellent way to give a patient privacy while still being able to keep an eye
on him/her by peeking over the book every now and then, or to read to a patient.

A watch - To keep an eye on the time, intervals between breaths and to note the time of death
when the patient dies.

A stuffed toy - I often carry a stuffed animal in case I encounter children or a patient who is a
bit restless and could benefit from having something in his/her hands.
Sometimes I carry crayons and some coloring pages as well.

Soothing music - To play for the patient; harp or light piano music is often much appreciated
as is a CD with nature sounds - it can be soothing for the patient/loved ones and create a loving
atmosphere. Personally, I sometimes play Native American flutes for patients. Music may allow
for the mind to stop and the heart to feel and/or for memories to surface spontaneously.
Watch the patient closely; sometimes music can tie down a patient and if that is the case, stop
playing the music.














Because I personally, am available for transition care 24/7 and I overall take care of the care
request from the time comes in until after the patient dies, I also keep the following items handy
at all times:

Mini overnight bag - I standard carry; mini tooth paste, Whisp - mini flavored tooth brushes,
floss, mini lint brush, Charmin to go toilet seat covers etc. hairbrush, clean underwear, contact
carrying case, mini deodorant, period supplies, washcloth, small towel.

A whistle - This is for safety at night or a big parking lot. I also carry some other items for
personal protection, but it that is a personal choice and it often varies by state, town and/or
county what you are allowed to carry by law.
12

General Knowledge (10)

Boundaries!

Personal boundaries:

- Am I comfortable with death?
- Am I comfortable to be alone with someone who is dying?
- What if a patient or loved ones start proselytizing?
- Can I refrain from proselytizing myself?
- Am I capable to deal with the tears and/or stress of loved ones?
- Am I capable of not taking it personally if a patient/loved one is rude or displays
inappropriate behavior?
- Am I capable of setting my personal feelings and/or preconceptions apart?



As a hospice volunteer:
Know the boundaries set for you, as a volunteer, by the hospice i.e. know what is within your
scope and know what is prohibited by the hospice you serve with. As a transition care volunteer,
one of your tasks is to maintain a great relationship with the patient, facility staff, loved ones,
and the hospice staff as well.

It happens quite a bit that facility staff members assume that since you are with hospice and you
are sitting with their resident, you automatically will take over all of their tasks. This is not
necessarily because they are lazy, but mostly because a lot of them have never worked with
hospice or simply do not know the scope of a hospice volunteer. I have been asked a few times
how much I get paid, or people will make the remark: well you have it easy; you get paid for
just sitting there. Sometimes there are language barriers.

It is advisable that you educate the facility staff about your scope as a volunteer, and in some
cases you may need to educate certain hospice staff members about this as well.
Another important boundary is recognizing when is it time to hand over care to other staff
members (know that you are capable of handling a lot of things, yet knowing when professional
staff needs to be involved)

Very important for you is: where do I draw a line where my boundaries are concerned?

13

Hospice protocol
Always go by the protocol that is in place at the hospice that you volunteer for.
It is very important to stick to hospice rules and regulations as diverting away from them even if
meant well, may result in very serious consequences.


The process of dying
Being knowledgeable is good practice in general and it gives the patients loved ones more
confidence to leave their friend or loved one in your care to go get some rest or a change of
clothing or anything else deemed necessary. The human body itself knows perfectly well how to
die; it is our job to guide the patient and loved ones through the process. This will be discussed
later in the presentation.
















Basic familiarity with names of some of the medications commonly used at the
end of life.
It is comforting for the loved ones to know a little bit about medications.
Especially in a facility setting where things can appear a bit hectic at times, you may get
questions from loved ones. It may be comforting for them to know why their loved one receives
certain medications. As volunteers we do not need to know their chemical composition but just a
general this will help your mother breathe easier sometimes does wonders.
Loved ones may feel more included and informed this way.

When loved ones notice that you are knowledgeable, it may make it easier for them to trust you.

14

What kind of medication is the patient receiving, why and when?

This is good to know because that way you can observe whether a patient is actually getting the
prescribed medication and in a timely matter. (Sadly, that does not always happen: If you ever
suspect this being the case contact the hospice right away!)


Example:

I was providing transition care for a woman who was actively dying and her daughter who stayed
lovingly by her side. The patient resided at a facility which was not affiliated to the hospice
which I was volunteering for. During the time I spent with them, both the patients daughter and
myself on separate occasions experienced that the same staff member from that facility reported
to have administered medications to patient. However, given the time frame mentioned and
certain other circumstances there was absolutely no way that this could be true. Needless to say, I
reported this to the hospice right away and the hospice administrators handled it from there.

Being knowledgeable about the patients status and current medication(s) is also important
because it comes across more professional to loved ones and staff members.

For most of the patients whom you are visiting for transition care, the regular medications may
have been discontinued this is standard procedure and you may hear the term: the regular
medications are DCd (Discontinued abbreviated)

Knowledge of frequency and administered doses may be important to know so that if the patient
struggles you could contact a staff member to advice them of that and ask if an increase might be
appropriate. Some hospice nurses will leave a sheet with this information at a private residence;
it is advisable to keep this in a visible place like on the refrigerator.













15

What type of residence, afterhours access

Knowing upfront at what kind of residence the patient is living and if applicable what room
number, makes it easier for you to find and it comes across more professional if you have this
information on hand.

Some apartment buildings require a residents key to be able to take the elevator upstairs and
retirement homes often use a separate entrance after certain hours, or a code to enter the facility
etc. A hospice staff member may be aware of these things, especially if they work with more
residents at the same facility, or if they have been there before.

It is just a lot more practical to be aware, not to mention; a lot safer.
Sometimes, if a patient is by himself/herself and the neighborhood isnt the safest of places, there
may be a lock box in place. In some cases, a lock box also may be used if a patient cannot really
get to the door to open it. A lock box is a box that the hospice can put on a patients door to
prevent unwanted parties from entering the residence. This box will have a code and when you
punch in the code, it opens and you can take the house key out of it and open the door. Do not
forget to knock and identify! You may have seen a lock box on real estate properties.

At a locked Alzheimers unit at facilities, you will need to know the security codes which will
allow you to leave the unit or the floor. If you do not use the code, you will trigger an alarm.
The code is sometimes posted on a place near the door that is inconspicuous to residents or
visitors and if so, a staff member will be able to tell you where it is located.

In case of a facility name, full address, and phone number
Its good to have this information for the simple reason of finding the residence, facility and in
case any communication needs to take place before and/or you go there.

Where to park, parking meters
It is good to know upfront if you need change for a meter
or if you have to park in a designated section
such as the visitors section at nursing homes.
For certain neighborhoods you may need to display
a specific parking tag to prevent being towed;
the patient and/or loved ones should be able to tell you
about that and if they have a spare one,
they will most likely let you borrow it.

In case of a parking meter it may be smart
to note the time of your arrival or set an alarm
in your phone so you dont forget to feed the meter.

16

Patient Specific Information (11)

Patients full name, phone number and address
You will need to know the patients full name and age. Phone number and address are obviously
important information to have on hand too. As mentioned earlier, the type of residence, parking
and afterhours access are important as well.

Patients diagnosis, status, gender and age
Being knowledgeable about the patients status/diagnosis is important so you know what to
expect in terms of what the patient may look like, how he or she may act etc. and you also come
across more professional to loved ones and staff members. Obviously, the hospice will inform
you if a patient carries a contagious illness such as MRSA, and preventive measures will be
taken. Gender is important because names can get confusing and in certain cultures it makes a
big difference whether you are working with a male or female. The age of the patient is
important for the very same reason.

Some of the patients history
It can be very important to know some of the patients history as this often greatly influences a
patients behavior and needs for appropriate care. Some examples are:

Is the patient an Immigrant? Does she speak a different language? Is he a veteran? What are his
diagnoses? Does she have any abuse in her history? Etc.


















Children and pets
Children require a bit of extra attention and pets may be welcomed by the patient.
Children and pets will be discussed further in chapter four.
17

Are there any family dynamics that may present a concern?

Family dynamics may influence peoples behavior and may require careful navigation.
Everything that is happening at this point concerning the patient as well as his loved ones is in
the context of everybody involved. They all have their own experiences within their circle:
experiences together and the same experiences on a personal level.

It is truly amazing that, when you ask loved ones to share an experience which they went through
together, how different their stories may be. And most of the time, people stick to the fact that
their interpretation of what happened is the only truth. And in a way it is: because it is their truth,
and their reality. It is a big area for possible conflicts, especially when it is regarding a subject
that doesnt necessarily carry pleasant memories for everybody involved.

On top of possible areas of friction in the past, comes now the journey which has led to hospice.
Oftentimes, hopes of recovery have been crushed over and over and by now everybody involved
may be experiencing some pretty raw emotions. Especially at the time when one has entered the
stage of actively dying. A lot of times, people have still been hoping deep down inside that they
will not have to lose their loved one. Now, at the end stage, where people are truly actively
dying, there is no escape from reality THIS IS IT THIS IS REAL

In light of having to face this painful truth, a lot of people tend to shut down, go into a survival
mode or simply lash out at others. These are all valid, common emotions and tensions can rise
pretty high. Knowing of possible frictions upfront will enable you, the volunteer, to have a better
insight and understanding and allows for the ability to be of the best support that you can be.

Sometimes there may be frictions between the patient and loved ones, or between the loved ones
themselves. Our role as a transition care volunteer is to navigate very delicately within those
dynamics. This phase on their path is where you can carefully observe for some early
bereavement concerns, which you may then pass on to the volunteer coordinator or other
appropriate staff member such as a bereavement coordinator or a Chaplain.

Especially at a private residence, it can be tricky if you would let somebody in the house that is
not welcome. Overall, the patient, his/her loved ones or the hospice staff will let you know.
For this simple reason, if I am alone in a residence; I will not let anybody enter the home unless I
know upfront that they are coming by. Like a hospice staff member, a son, a daughter or a close
friend. Obviously, if a patient is able to communicate, it ultimately is his or her decision.

18

Who is on the patients care team?

Know who is on the patients care team, know who to call and in what order.
In case you need to reach one of them and it also comes across a lot more professional to
patients, loved ones and staff members at facilities.

Who is on call afterhours?

For transition care visits outside of regular business hours, be aware of who are the staff
members that are on call; they may be different staff members then the ones that would be
assigned to the patient during business hours!

A lot of hospices will use an answering service for afterhours, and the actual persons answering
the phone at that time may not be in the same state that you are in so they will not necessarily
understand who you are talking about. Therefore, it really helps if you know the name of the
staff member that you are trying to reach and the position they hold within hospice. (Especially
for hospices that have branches in numeral cities).

Some hospice staff members will provide you with their cell phone number most of them carry
quite a caseload, so judge wisely as to when it is appropriate to call them directly.










Special considerations

Certain situations may call for creative solutions. This usually stems from a patient being restless
for numerous different reasons. Throughout the presentation I will give some examples of
situations you may encounter and options of how to handle them.
19

Introductions (12)


In the following slides we will discuss different kinds of introductions such as introductions to
the patient, loved ones and staff members and we will also discuss the use of personal and
physical introductions and introductions to people who are unresponsive.

20

Introductions at a facility (13)

Reception desk/Guestbook

When arriving at a facility, I always check if there is a visitors book to sign in.
If so, this is usually located at the reception desk or near the facility entrance. At times there is a
specific guestbook for visitors who represent a hospice or other professional organizations.
Other times there may be a guestbook where every visitor is supposed to sign into.
Overall, you are expected to sign in your name, which hospice organization you represent, which
resident you are visiting and time in (when you arrive) and time out (when you leave).
If a receptionist or host is present, he or she will gladly tell you where the patient is located as
well as guide you to the nurses station. On your way there, take the chance to observe where the
emergency exits are.


Nurses station

I always introduce myself at the nurses station first,
and I keep my badge covered until I do so;


Hi my name is ., I am a volunteer for .. I am here to spend some time with Mr./Mrs.
I just wanted to introduce myself so that you know who I am and that I am on the premises.

Note that I did NOT say HOSPICE!

I did not do that, because most of the regular staff will know that a patient is on hospice so they
will recognize the name .. and the ones who do not know will see it on your badge.

This way, you protect the patients privacy and for the same reason, I also did not use the
patients full name.

This is a good time to ask the facility staff if there is anything specific about the patient that you
should be aware of. Cover your badge again before going to the patient, but do verify patients
room number; people get moved around all the time!
May I assume that Mr.... is still in room .?
The badge I cover again, because oftentimes there are a lot of people in the hallways of a facility
and seeing a hospice badge may cause some restlessness.

As part of universal precautions; make sure you use a hand sanitizer before you see the patient
and/or loved ones and after you see them. It is good to do this visibly for staff members/loved
ones; it shows that you are a professional.
21

Meeting patients and/or loved ones (14)

I consider introductions the same whether it is at a facility or a private residence. When visiting a
patient at their home; make sure that you cover up your badge before walking up to the
house/apartment it is not of anybodies business that this patient is on hospice.
Try to make sure that you are going to visit with an open heart and open energy no agenda.

Truly, I do not even say to myself upfront: Im going to help these folks. That in itself even is
an agenda Besides, how would you know upfront what would be the best approach to help the
patients and loved ones? J ust go in and be.

Walking into a patients room with an open energy seems to work best. If you arrive with a calm
and confident attitude, the patient and/or loved ones will more than likely follow your energy.

Be responsible for the energy that you bring.
Always knock even if the door is open! It is common courtesy.

Ask if this is room and if you may come in.

Before anything else, I disinfect my hands. I usually say: hi, how are you? Please excuse me I
have been running around so I just want to make sure my hands are clean. Thank you.

I always make sure that I am within the patients field of vision and make eye contact; it is
respectful and you never know how a patients hearing ability is at that point.
Greet the patient with a smile: a smile can do wonders!

Do not tower over a patient this can be very intimidating for a patient you can get down to
his or her level for instance, by kneeling.

Address the patient appropriately:
As we strive to keep a patient as comfortable as possible, try to find out upfront how to best
address the patient:

If a patient has Alzheimers disease for instance, there is a chance that this patient, in his reality
is living lets say in 1930. This patient may believe that he is six years old.
Then, it could possibly be quite confusing for him to be addressed with Mr.
In his mind he is six years old, remember?

So, a loved one or staff member may tell you to just call him Timmy. In that case, just go with
that; even though the patient may be your elder, you are not being disrespectful because
familiarity is very important to people who are in that stage of their dementia. It really can make
a big difference for the patient and loved ones, because you show that you care, that you are
knowledgeable, and it often prevents or eases restlessness in a patient. This of course, is always
nicer for the loved ones as well. In certain cultures it is highly important to address a patient with
Mr. or Mrs. Sometimes the patient may insist to be addressed to in a certain way, like a
nickname for instance.
22

Use short, clear sentences

Hello Mrs I am I am a volunteer with I would like to spend some time with you if I
may. Use short sentences and speak in a clear voice.

If a patient or loved one has hearing difficulties, it may be beneficial to speak in a lower register.

J ust like at my introduction at the nurses station, I do not use the word hospice.
The patient and/or visitor may not be aware of the fact that the patient is on hospice.

(That does not mean that I keep the truth from anyone, I just dont volunteer that information
unless a patient asks directly.)

In case I visit a patient who has a form of dementia or is otherwise confused, I usually will say;
Hello., my name is Im a friend (sometimes I use a name of a family member - Im a
friend of) because the word volunteer may not mean anything to a confused patient.


Introduction to loved ones/Introduction on a personal level

If a patient is unresponsive, I always introduce myself to the
loved ones first. Make sure that your badge is visible and
introduce yourself in a professional, yet warm manner: I
always go to every person to introduce myself personally
rather than make an announcement to the room.

It presents people with the idea that you are truly there for
them; a simple: how are you holding up goes a long way. If
somebody starts telling you how they are, genuinely take some
time to hear them out. Looking people in the eye, kneeling
down in front of them if they happen to be in a low chair, brings you a bit closer as well.

It is an excellent manner to get a feel for who is who, and their relationship to the patient.
This is also a good way for you to find out if there is a staff member from hospice present.
(You may not always know them beforehand).

I always like to point out something positive right away; it sets a more intimate tone.
But be sincere: a lot of times a dying patients loved ones are really, really watching what goes
on with the patient. This is a mighty intense time in their lives and therefore, they can be in a
heightened state of awareness and they will see right through you if you say something just
because you think you should. It truly does work though: Wow, your father looks so peaceful
today or What a beautiful picture does your mother like flowers?
It sets a caring tone and is also really nice as a conversation starter.


23

Write down your name

Even though you wear a badge, it is always good to legibly
write down your name and post it somewhere where it is easy
to find for loved ones. Patients have people coming in and
going all day long and it gets confusing to remember who is
who and who they were. This will be especially appreciated
when you are sharing a transition care call with others.
A simple ., volunteer will do.

If at any given time during your visit you have to reintroduce
yourself, do so like it is the first time. Both the patient and
loved ones meet so many people in a day that it may get
confusing to them.


Ask questions

Ask loved ones what they remember hospice staff telling them on how the patient is doing and
what is going on at this point. Ask them how they are holding up. This is an excellent way to
figure out where they are in their understanding of the patients status and the process of dying.
This will help you to assess how to best assist them, educate them and it is also a great way to
pick up any possible early bereavement concerns.

If there are questions from the patient or loved ones make sure that you only answer those
questions which you are knowledgeable about and the ones that you are comfortable answering.
Do not guess. You may offer to find out an answer to certain questions, but then make sure you
follow up on that offer.

You may also ask them if they are aware of something concrete that they may need at this time.
You can repeat this question off and on during your visit.

Whenever you leave, ask if you may come back (if you are scheduled and/or inclined to do so).
It not only is common courtesy, but it also shows that you care and that the patient/loved ones
have a choice thus provides them with a sense of control.

Dont be afraid to ask questions about the patient; loved ones often love to reminisce!
24

Physical introductions (15)

When a patient is unconscious or unresponsive, I always assume that they do hear everything
that I say to them but as I can never truly be certain of that, I also briefly touch the patient in
hopes that he or she may become physically aware of the fact that someone is by their side.

After introducing myself verbally, I will state: I will briefly touch your (right or left) arm now,
so that you may be physically aware of my presence. It is another just in case way of making
people aware that you are with them, but it may also be comforting to the loved ones because
you show that you care.

Emotions and caring touch
It is most appropriate to always ask upfront before touching or hugging a person.
There is one exception to that rule: and that is when a person is sharing an emotional event like
something really bad that has happened during the course of his or her life.
Youd be surprised of the reaction evoked when you just touch ones arm with your hand very
briefly and simply state: I am so sorry that you had to go through that

25

Working with staff members (16)

Introduce yourself to patients care team

Besides introducing myself at the nurses station, I also introduce myself to every staff member
that visits the patient so they are aware of who I am and vice versa; I know who they are and
their role within the patients care team.

Facilities will have a restroom which is designated specifically to members of the staff.
It is advisable to figure out beforehand where it is. Most staff members will gladly show you
where it is located.













Explain how long you will be there

Staff members sometimes like to know how long you will be with the patient. It gives them
peace of mind because they know somebody is with their patient and, if you happen to leave,
when they may need to fall back on checking in more often with their patient themselves again.
It may also nice for them to be aware if somebody will relieve you.


Explain your scope as a volunteer

Always explain your scope as a transition care volunteer and emphasize that you are NOT
allowed to provide hands on care to the patient. (Unless the hospice that you volunteer with has a
different policy in place regarding this issue)


26

Working with staff members continued (17)

Be respectful and show tact
Remember that you may be visiting patients who have been receiving care from the same staff
members for years. Naturally, a bond has formed between them often. This may cause for staff
members to be a bit protective of the patient, especially if the staff member is not familiar with
hospice. Therefore it is advisable to use tact when it comes to offering suggestions to help
maintain the patients comfort. It shows respect and that you are not there to criticize or take over
the care of their patient.

Do not make assumptions
I used to look at nurses, doctors, cnas and other professional caregivers in a way that was not
necessarily fair to them. I assumed that, just because they had a medical education/background,
they would automatically know everything about dying processes and death as well and that
dealing with death is therefore easy on them. This is often not the case...

Call button
I always let staff members know that If I ring the buzzer, your patient is still with us and if the
patient dies, I will come get you. This eases the mind of staff members because they often love
the patient and sometimes they worry that their patient has died every time I ring the buzzer.
So in that case they know that the patient just needs to be repositioned, for instance.

If you think that the patient needs something, explain why
Staff members are almost always open to suggestions that would help keep the patient as
comfortable as possible. In the light of maintaining a good relationship with them, explain why
when you are making suggestions about patient care.

In my own experience, it was also welcomed because you may just give the staff member an idea
that they had not thought of just yet and which they could apply in the future with this patient or
other patients as well.

Example:
A patient was extremely restless. Part of what seemed to be bothering him was that he felt that
the tubing from his oxygen supply was too long; he kept trying to rip it apart but clearly didnt
have the strength to do so. The facility staff tried to tell him over and over that the length was
okay and they taped up the tubing so it appeared shorter but the patient kept trying to tear it and
was getting more and more aggravated. I suggested that this man was from a generation where
wasting things was just not tolerated. I asked for a piece of old tubing and while talking to him,
I switched it very quickly with the tubing in his hands. (Youve got to be quick to pull this one
off). When he started pulling on it, it seemed to him like he finally broke the extra piece of
tubing off and he handed it to me and said quite triumphantly: here, give this to the nurse so she
can use it for her patients. The patient settled down and the nurse thanked me for giving her a
new idea.

27

Offer staff members alone time with the patient

Staff members often have formed a strong bond with their patients. You may encounter that
especially those who work in long term care. I always offer them some time alone with the
patient so they can say their goodbyes and this is usually very much appreciated.
















Keep staff members updated

Staff members often have a tremendous case load and are very busy.
That doesnt take away from the fact that they care for the patient genuinely.
Therefore they often greatly appreciate it if you keep them updated on how the patient is doing
or has been doing during their absence. Obviously, being aware of the full picture also helps
them to provide the best possible care to the patient.


Thank staff members after your shift ends

When your shift ends because you are done or because the patient has died, it is always
courteous to go to the nurses station and thank the staff members for their care and their
cooperation. It is good for business relations (remember you represent hospice) and always
nice if you ever get to work with the same staff members again.

28

CHAPTER TWO (1)

Contents:


The intensity of people (slide 2)

Intro (slide 2) pg. 29

Its a tough situation for everyone (slide 3) pg. 30-33

Patients who are actively dying may (slide 4 & 5) pg. 34-36

Loved ones may feel protective of the patient (slide 6) pg. 37

Factors which may influence behavior of loved ones (slide 7) pg. 38-39

What kind of questions can you expect? (slide 8)

Questions from patients (slide 8) pg. 40

Questions from loved ones (slides 8 & 9) pg. 41-43

Questions from people at facilities (slides 10 & 11) pg. 44-46
29

The intensity of people (2)

Try to remember that you enter peoples lives at a very intense period. They are human beings
just like you; volatile at times, happy, angry They can display basically any emotion in the
book. No matter how often you have attended a death; every time is different for the simple fact
that every patient is different, so are loved ones and every situation is absolutely unique as well.

Everybody involved may sleep and/or eat a lot less because of the stress and may therefore
become irritable easier.

Death is a normal part of life as we say but it can be a whole different ball game when it
enters ones own life!

For patients as well as loved ones death does not just mean having to lose someone, but it also
means having to say goodbye forever to each other, goodbye to things and beloved pets, and
expectations and possibilities for the future. An example for shattered expectations would be a
parent seeing the dream shattered of her son ever sharing his marriage and/or grandchildren with
her. Sometimes dying also may mean loss of the possibility to rectify any mistakes and/or
wrongdoing in the past.

For patients, loved ones and you, past experiences with life, illness, and death will more than
likely color your perceptions and/or expectations around these issues.

If a patient is rude, it more than likely has nothing to do with you as a person, rather than an
issue that they possibly are working through.

For instance:
What will happen when I die?
What will happen to me after I die?
What will happen to my loved ones when I am gone?
What will happen to my pet when Im gone?
Some patients are angry at God
Loss of independence
Unfulfilled dreams/expectations
Seeming injustice

There can be multitudes of reasons for people acting/reacting a certain way; just a few are stated
here. Try not to take it personally, but rather remember that everybody deals with stress in their
own way.
This does not mean that dying gives a patient and/or loved ones a free pass to be abusive!

If at any given point, a patients behavior (or the behavior of loved ones, for that matter)
becomes too much for you, contact hospice right away.

30

Its a tough situation for everyone (3)

It is a tough situation for anyone involved and it is our task to navigate delicately.
The tightrope walker represents this navigating and the cloud covering up some of the factors
involved represent that we never know everything that is involved in a patients situation/life.

Many emotions possible
Sometimes the people involved feel that, what little time they have left with the patient should be
spent privately and so at first they may perceive hospice coming in as an intrusion.
Personally, I have never experienced this.

Sometimes both the patient and loved ones will ask you on separate occasions to not tell the
other party that the patient is dying. This often happens because they want to spare one anothers
feelings.
In a way this may seem almost comical but in reality it may be very tragic because when facing
the truth, people may be able to be more open and honest with each other and in touch with ones
emotions and be able to possibly resolve unresolved issues.
I usually respect these requests, but I do inform my volunteer coordinator if this arises so that if
the members of the patients care team feel it appropriate they can delicately address the
situation. Sometimes the patient has not been told for cultural or other reasons so do not take it
upon yourself to inform the patient.

There may be many contributing factors that we are unaware of
There may be many things that have occurred or are occurring in the patients life that may
influence his or her life and/or ability to die in peace. The same goes for the lives of loved ones
and anybody else involved, including the volunteer.

Snapshot
Try to remember that when we enter a patients life, we only grasps a momentum - we only see a
snapshot of the patients life and the lives of loved ones. All the more reason why we need to try
our best to stay away from judging the situation and status of all involved as any given situation
may be more complex than we perceive.

Lifelong habits
Every person has developed lifelong habits and these may be hard to break. If it is a negative
habit, it may be difficult to change. For instance, in the case of a person with lung cancer or
COPD that smokes. An issue that may arise in that situation is the discussion whether at the end
of life, it is really necessary to break this habit. In a lot of situations lifelong habits that a person
has developed, are difficult to deal with for loved ones.




31

No judgment

As volunteers we are not in a position to judge and even if it is difficult, we should try to refrain
from judgments. If you ever find yourself judging a patient, loved ones and/or a situation and
feel that this may interfere with your ability to serve at this transition care request adequately,
contact your volunteer coordinator.


Example:


A patient had an extremely loving family who surrounded him daily. He was expected to die
very soon. One of his loved ones was in great denial and he kept on physically moving the
patients extremities as to keep the patient active because within his denial, he still kept telling
the patient you are going to get through this. This activity seemed to interfere with the
patients dying process quite a bit and it was disturbing to other loved ones.

The nurse and I tried talking to him about this and he would say that he understood that the
patient, at this stage in the dying process, was not going to recover. Because there was alcohol
involved however, he would start exercising the patient over and over again. At a certain point
I noticed that it started to bother me greatly and quite frankly; I started to get irritated with him!
He became quite annoying to me and I started judging him.

Having an understanding of why a person is behaving a certain way is not always the same as the
ability to deal with it and it is absolutely okay to express this. I talked to my volunteer
coordinator, tactfully excused myself to the patients loved ones and I removed myself from the
situation to regroup. After I did so, I went back to the residence, the nurse and I had another
family conference with the loved ones, and it didnt happen again and the patient had a peaceful
death fairly soon after that.

In this case, I had to remove myself from the situation and reassess whether I could provide
adequate support to this patient and his loved ones because I was at risk of losing my temper and
that of course is never acceptable.










32

Boundaries

On that same token; as a volunteer you are only human and you may run into a situation that is
not acceptable to you that is or unhealthy for you. It is very important that you protect your
boundaries and if you ever encounter a situation that bothers you, contact your volunteer
coordinator.

Example:

This example involves a woman with cancer who lived alone and with whom I had been visiting
often for a while (not for vigil) and so we had formed a close bond. She was well aware of the
fact that I am a transition care volunteer and she told me that when she would enter the process
of actively dying, she wanted me to be by her side.

I informed her that she would have to contact my volunteer coordinator to make that request, but
that I would be happy to provide transition care for her when the time would come that that
would be appropriate.

My volunteer coordinator gladly assigned me for this particular transition care request but the
closer this patient was getting to death; the more she insisted that I stayed with her. So, in caring
for her genuinely, I started to visit her multiple times a week and we even would talk during the
night sometimes. Soon, she started asking me to stay with her for days or a week even. (The
nights too) I knew that I couldnt honor this request and this bothered me so much that I found
myself being quite upset because this woman lived alone and she was obviously scared.

This is when I realized that I had to request to be pulled from this case as in genuinely caring
for this patient, I had allowed for my boundaries to fade and for myself to become too closely
involved with this patient. It broke my heart. I did get pulled from the case and the patient died a
short while thereafter.













You can absolutely genuinely care for the wellbeing of a patient, but you have to maintain a
professional distance to protect yourself.

Safety comes first!
33

While people go through these intense times emotions sometimes run high. If you ever feel
threatened or uncomfortable in any way, remove yourself from the situation and call hospice
right away. Obviously you are to call hospice right away as well if you ever suspect that the
patient may be in danger.

Example:

I was being relieved by another volunteer when sharing a request for transition care when she
confided in me that she felt threatened by the patients roommate. She told me that she was not
comfortable staying in the house alone with him (there were no other loved ones available and
the patient was unresponsive) and she felt horrible about not being able to honor her shift.
I called my supervisor and we compromised by having me double up on my shift by remaining at
the house with the patient, the volunteer and the roommate (whom I did not feel intimidated by).
This way we managed to keep the shift covered and the volunteer felt safe.





Personally, I have never really encountered a situation
in which I didnt feel comfortable enough to stay
but it is perfectly okay if you ever have to contact hospice
or feel that you have to leave because of an unsafe situation.


But always contact hospice about that right away!





In certain areas it may be advisable to have someone escort the volunteer, loved ones or staff
members to and from their vehicle or at least to watch them from a window.


Many emotions possible

So now weve come to full circle: there are so many factors that can influence ones life -
patient, loved one or anyone else involved.

34

Patients who are actively dying MAY: (4)

Below I mentioned some of the issues that patients MAY be dealing/struggling with.
Of course, multitudes of other options are possible.

Be unresponsive

Experience high fevers

Need permission to die

Gently inform loved ones that is often is very important to patients to get permission to die and
besides that, it is often important to a patient to hear that the loved ones will be okay, that they
will be taken care of (INCLUDING any pets).

Example:

A patient had lost a daughter at the tender age of three and had never quite been able to come to
terms with it. She also seemed to have trouble letting go. She had become very close with her
remaining daughter who now, as an adult herself, thanked her mother for all that she had done
for her and told her: its okay to go now mom; go be with I want you to see her again and I
want you to be together. The patients body visibly relaxed as she seemed no longer torn about
her sense of loyalty and she passed away peacefully soon after.


Be waiting for somebody

Some people seem to hold on until a certain person has visited them or has called on the phone.
It seems like they wish to say goodbye or that they want to hear that persons voice just one more
time and it can truly tie people down so to speak.


Example:


A patient seemed to be waiting for something or
somebody. At a certain point we noticed that she was
getting restless when a certain person was mentioned.
This was a man who was very close to the patient but
who had not visited the patient yet due to his own
concerns about dealing with death. When he heard about
this, he decided that he wanted to come by to say
goodbye to his longtime friend after all. The patient
seemed a lot more at peace and died soon after


35

Be frightened of the unknown/what is to come when one actually dies

Struggle with unresolved Issues

Patients may struggle with unresolved issues from the past and present.
Sometimes this may include conflicts they may have had with others or questions that have never
been answered etc. Sometimes they may find these answers and/or resolve and for some people
this may never be achieved before one passes away.

Not everybody has lived their lives in an as honorable way as others so some patients may be
waiting for forgiveness for certain things or actions that they have been a part of in the past.
Forgiveness doesnt always have to come from others one may have to find forgiveness within
as well and that can be hard in itself.


36

They MAY also: (5)

Worry what may happen to their pet(s)

Pets may be of tremendous importance for people, especially for those of whom the pet was their
main companion in their final years. Reassurance that this pet will be cared for may help certain
patients make a more peaceful transition.

Fluctuate in their level of consciousness

Worry about what will happen to their loved one(s)

Be holding on until a certain date/event has happened

Patients have been known to wait until after a wedding has been commenced or a birth of a
child, after a certain anniversary date, a birthday etc.

Seem to be aware of entities that you may not be able to see



Some patients appear to be having visions of people who have
passed before etc. We will discuss this later in the presentation
when we go over the signs and symptoms of the dying process.




Seem to be communicating with these invisible entities

This too will be discussed this later in the presentation when we go over the signs and symptoms
of the dying process

Role reversal

Sometimes a patient will take on the role of caregiver to spare loved ones feelings etc. but this
may put the patient in a rather precarious position because it may prevent him/her from being
able to voice possible concerns and/or fears surrounding their own death.

Patients may feel powerless because they dont know how to help their loved ones.
37

Loved ones MAY feel protective of the patient (6)

It may feel quite intrusive for people to have so many folks coming into their home once the
patient starts receiving hospice care.

Sometimes loved ones may feel that having to relinquish some of the patients care to
professionals, means that they are being judged as being incompetent that the care that they
provided to the patient wasnt good enough. They often have been caring for the patient for quite
a while and/or on a very intense level so that could possibly make them meet you with hesitance.

Or sometimes they may feel that nobody is going to be able to provide adequate care to their
loved one or at least not as well as they do.

Overall,lovedonestrulywelcomethesupportofatransitioncarevolunteer.
38

Factors which MAY influence the behavior of a patients loved ones

(7)

A lot of times, they are struggling, just like the patient. It is easy to snap at people when we are
under a lot of pressure. I think we can all relate to that.

Oftentimes people are just really sad about seeing the health of their loved one declining.
Many of them may feel helpless and scared. Or they may feel like they are not doing enough for
their loved one; they oftentimes feel powerless.

They may be profoundly sad because know that they are losing their loved one soon.

Loved ones are sometimes angry at God too.

When a death of a loved one comes near, our own mortality seems to get magnified as well,
especially when the person who is about to transition is close in age to us or when we are dealing
with a serious illness. This can bring out stress in a patient, loved ones, as well as caregivers and
volunteers.

Sometimes loved ones are angry at the patient for dying - How can you leave me now?
- Why am I in charge?

Of course there are also cases where the loved ones are struggling with unresolved issues.
This can be extremely hard when the patient is no longer able to communicate by the time the
loved one reaches them, like people who live out of state for instance.
They may struggle with the idea that these matters may forever remain unresolved.

Some people struggle with guilt. You sometimes may encounter that after an argument, suicide
or with children: If I only had. If only I had not It is my fault because I

If there has been a significant strain on the relationship between a patient and their visitor(s),
sometimes their bond is a lot less than it was before. Sometimes there never has been a bond.
This can cause struggle within a circle of loved ones because sometimes people think: why is
HE here? He does not even care one bit!

And sometimes, that is very true. Sometimes, a visitor does not feel sad at all because the patient
is dying. Sometimes, hes just there because it is the thing to do. Try not to judge

In the same context, a person sometimes struggles with this: How can I not care, this is my
father! For some people, too much has happened in their relationship with the patient for them
to feel love or compassion for this person even at this stage in their lives and that this seemingly
uncaring feeling can be pretty unsettling for the one(s) experiencing it.

Occasionally a loved one may feel envious towards the volunteer. This sometimes happens if a
loved one has been estranged from the patient and the volunteer has developed a bond with the
patient within the time the patient and the loved one were apart. The patients loved one may
perceive this as though the volunteer has taken his place in the patients life.
39

Family members sometimes may struggle with their loved ones last wishes. For instance;
sometimes a patient may choose to be cremated after death, while the loved ones would prefer a
burial ceremony. Or sometimes patients loved ones feel that a patient has given up by
deciding to receive hospice care.

On that same token it may be hard on patients loved ones if they were the ones who had to
decide for the patient that it was time to start receiving hospice care.
They often have the same feeling as mentioned above, only they sometimes direct it towards
themselves and feel guilty for giving up on the patient.

People who are about to lose their child (regardless of age a fifty year old is still his mothers
child, just as much as a little child) often struggle with feeling guilty because they could not
prevent their child from dying.

Death of a grandchild may evoke strong feelings of guilt in the grandparents; on top of having to
deal with losing their grandchild, they also have to deal with the fact that they could not prevent
that their child (the dying childs parent) has to deal with this loss.

Having a parent who is dying may cause a lot of pressure on the life of loved ones because of a
role reversal the parent often changes from being the caregiver to the one who needs care and
the loved one becomes the caregiver. After a parent dies, the loved one often gets put into the
position of caregiver because he or she has to take care of the other parent now.

Religion some patients and/or loved ones struggle with their faith or belief system when closer
to death.

Sometimes loved ones are worried about worry how they will react while the patient is actively
dying (will I freak out?).

They may worry ahead of time about things to come after the patient has died such as handling
the patients estate and such.

Loved ones may struggle with ethics my mother doesnt want this medication but I think it
would be better for her if she would take it should I sneak it into her food?

40

What kind of questions can you expect (8)

Questions from patients:
Am I going to die?
I cant really say that I have ever met anyone who didnt know that they were dying.
Sometimes a patient has not been told for cultural or other reasons. Overall it wouldnt
be a question that a patient would seek for you to answer as much as an opportunity to
voice it out loud and an opportunity that may lead them to other questions.

Will it hurt?
There are patients who may ask you this question.
Most patients know that overall people cant really know how it feels when one dies but they
may be scared at times and it may be helpful for them to verbalize these fears/concerns.
So they are not necessarily seeking profound answers from you but rather may be looking for a
listening ear. It is important that you acknowledge that any fears regarding this issue are
completely normal and founded. Make sure to disconcert when it is appropriate to call in other
staff members such as a social worker, a nurse or a Chaplain.


Can you pray with/for me?
If somebody asks you to pray for them/with them and you are comfortable doing so, make sure
that you ask them what it is that they would like for you to pray for. People may have a desire for
prayers for many things but that doesnt mean that their desires would automatically be in
alignment with what you may think they should pray for. So it is important to keep an open mind
and to refrain from making assumptions. If they practice a certain religion and ask you to read
something to them, ask if they have something available for you to read from that is appropriate
for them. Only pray/read what is comfortable to you and if it happens to be something that is
outside of your comfort zone, gracefully decline.

Example:
A loved one expressed to me that he was very upset with me and asked me: why arent you
reading to him from the bible? I answered calmly: because I am not familiar with his faith and
I dont wish to offend him nor you by possibly reading something that may be inappropriate.
I suggested to the patients loved one that perhaps he could read something from the bible to the
patient. He did so and later he thanked me because this gave him an opportunity to do something
special for his friend. He added that he appreciated my choice not to pray/read to the patient
when not being familiar with the patients religion and that he now understood that this wasnt
because I didnt care, but merely out of respect.




41

Question from loved ones:

How long does he/she have?

When a patient gets closer to dying, people may find themselves grasping for a sense of control.
You may be asked on almost every transition care call how long the patient still has to live.
As much as you may want to grant the patients loved ones peace of mind, you must refrain by
giving them an estimate. Later on in the training we will discuss this a little bit more.


Why does he/she not eat/drink? Will he/she starve to death?

This is another big worry that loved ones often seem to struggle with, especially since eating in
many cultures is so strongly associated with comfort and well being.
People do not necessarily understand that not eating/drinking is a normal part of the dying
process. Later on we will discuss this more in-depth and ways for you to guide the patient and
loved ones in compassion and understanding.

42

(9)

Is he/she in pain?

This seems to be one of the biggest worries that loved ones may have. Explain that everybody is
different and so may be pain levels. Pain management is discussed later in the training so you
will be able to explain to loved ones that everything is being done to keep the patient as
comfortable as possible. Sometimes another visit from the nurse to explain it all in detail may be
requested. In that case; pass the request on to the nurse or hospice.


What is the nurse giving him/her?

Some people are uncomfortable with asking the nurse directly what he or she
is giving the patient so they may direct their question at you. You may bring
their questions to the nurses attention and later on we will discuss a few of
the medications that may be used in end of life care so you have a little bit of
basic knowledge of what they are for.


Will that make him/her drowsy?

You can explain that everybody reacts different to different kind of
medications and that you therefore dont necessarily know. You may direct
loved ones to the nurse as well, so he or she can explain the medication
administered to the patient in more detail.

43

What happens when he/she dies?

Loved ones may like to know what lies ahead. So here you can explain that the nurse will come,
the patient will have to be declared dead, that the mortuary will be called etc.
Make sure to mention that a representative from hospice will be there with them (perhaps even
yourself) throughout this process and beyond.


How long will you be here?

It may be comforting for loved ones to know that you will remain by their side for at least part of
their journey.


Spiritual questions

As spirituality can be such a personal journey, spiritual questions can encompass all kinds of
areas. Answer only those questions that you are comfortable answering and be careful to guard
against coloring your answers according to your own spiritual beliefs this is the patients
journey. You may remind a patient and loved ones that spiritual support can be provided in many
ways through hospice and that different faiths and belief systems will be honored as well. If it is
thought appropriate for instance; you may explain that a Chaplain will gladly try to involve a
Rabbi if needed/desired.

44

What kind of questions can you expect at a facility (10)

Questions from facility staff members:

So, you are a volunteer?

Staff members are often very appreciative of volunteers and may come in to ask you about what
you do.

So, what do you do?

This is an excellent opportunity to promote hospice care and to explain about the training you
have received and of course your scope and passions as a volunteer.

So, you will turn him/change her?

Staff members that you havent met before may not be aware of your scope as a volunteer so
make sure that you remind people that you are not to provide hands on care.

Why do I have to give him these medications?

Ive heard this question a few times and I think that the staff members do not seek an answer
from me as much as that they are just thinking out loud. They may not be familiar with comfort
care and/or the medications that hospice uses or their levels for that matter. I usually talk about
keeping the patient comfortable and refer the staff member to the hospice nurse.

Why do I have to take up the dosage?


I have been asked this question by facility staff members.
If you ever get this question, suggest that the person who is
asking you this calls the hospice nurse and report the occurrence
to your volunteer coordinator. That way if the person does not ask
the nurse directly hospice may still find a way to address the
situation appropriately.

45

Why do I have to snow my patient?

Sometimes it may be rough for medical staff not related to the hospice to see their patient receive
hospice care. Mostly because they have been caring for this person for a while and they do not
want them to die. It happens too that they do not quite understand how comfort care truly works.

They still wish the best for their patients, but the way they were trained is absolutely different
from the hospice staff it is a whole separate culture! Their training is so ingrained with having
to cure and make people feel better, that having people go on hospice and especially seeing a
patient die, may seem like failure to them.

You may encounter that especially by the time you come in as a transition care volunteer i.e. at
the end of life; a lot of people may question the medication a patient may receive and/or the
quantity of this medication. They may state that they do not want to snow their patient; that
there is no reason for that. By snowing a patient, they mean that they feel that they are giving
the patient so much medication that it makes him or her groggy.

I usually point out that as a volunteer I am not involved in that aspect of the patients care plan
and that perhaps the staff member should take up this issue with the hospice nurse. Sometimes I
ask: would you personally be in a rather subdued state or in a pain crisis? I explain that a lot of
times hospice patients have a great input in how they wish to be medicated on their journey
through death and that hospice strives for comfort, but does not hasten death.

There are also a lot of people who work in the medical field who simply have no experience with
death and dying at all. So they may be a bit intimidated or scared. Luckily there are also a lot of
medical staff members who are very willing to ask questions and to be educated about these
topics.


Is she in pain?


A lot of staff members who work at facilities may not be dealing with death all that often.
You can explain about pain management, that the patient has a lot of input in pain management
and that everybody is different.


Spiritual questions


You may get spiritual questions from staff members.
Answer only what is comfortable to you and remain neutral.
If you feel that the staff member is struggling deeply with a
spiritual question regarding the patient/patient care, report this
to hospice right away.

46

(11)

Question from possible roommates and their loved ones:

When roommates, their loved ones and/or other people who reside at a facility are asking you
questions about the patient, they overall mean well. Remember that you are bound by HIPAA.
I usually keep it at Im visiting and she is resting right now.

Whats wrong with her?

Is he dying?

How long does he have?


Is she on hospice?

What happens after he dies?

Did you contact the family?

Are they coming?

She has not heard from her son in years, is he coming?

The personal questions I answer with that I dont know or that I cannot discuss anything
regarding the patient with them; keep your answers polite and within the bounds of HIPAA.




47

CHAPTER THREE (1)

Contents:

The signs and symptoms of dying (slide 2) pg. 48

Increased sleeping pattern (slide 3) pg. 49
Withdrawal (slide 3) pg. 49
Confusion (slide 4) pg. 50
Decreased appetite/thirst (slide 5) pg. 51
Decreased ability to swallow (slide 5) pg. 52
Weight loss (slide 5) pg. 52
Eyes/vision and jaw (slide 6) pg. 53
neck and ears (slide 7) pg. 54
Urine output/incontinence (slide 8) pg. 55
Swelling (slide 9) pg. 56
Temperature, blood pressure (slides 10 & 11) pg. 57-58
Heart rate, seizures, pain (slide 12) pg. 59-62
Cheyne-Stokes breathing (slide 13) pg. 63-64
Cheyne-Stokes video segment (slide 14) pg. 65
Death rattle (slide 15) pg. 66
Skin changes, mottling (slides 16 & 17) pg. 67-68
Last hoorah (slide 18) pg. 69
Terminal agitation (slide 18) pg. 70-71
Near death awareness (slide 19) pg. 72
48

Signs and symptoms of the dying process (2)

The signs and symptoms of the dying process are being discussed in the order mentioned.




Increased sleeping pattern
Withdrawal, confusion
Decreased appetite/thirst
Decreased ability to
swallow
Weight loss
Eyes/vision, jaw, neck, ears
Urine output/incontinence
Swelling
Temperature, blood
pressure
Heart rate, seizures, pain
Cheyne-Stokes breathing
Death rattle
Skin changes, mottling
Last hoorah
Terminal agitation
Near death awareness
49

Increased sleeping pattern and withdrawal (3)

More sleep, sometimes hard to arouse

Near the end of life, a patient may sleep more and may be hard to arouse
at times. This is very normal.
The patient may be dying but as nature dictates, the body is still fighting
the disease and that costs a lot of energy causing the patient to sleep
more and/or sleep deeper.

Changes in the patients metabolism caused by the dying process may
also cause a patient to sleep more.


Withdrawal

When patients start to decline, they often withdraw from everyday things and loved ones.
They may become quieter, have less interest in things that once were a great passion and
eventually, they may completely withdraw from their loved ones as well.

This can be really hard on the people surrounding a patient, as they often take it personally.
This is overall not the case though oftentimes the patient has to process a lot of things and
thoughts and/or feelings surrounding ones own impending death; they may worry about facing
the unknown (death and dying) or about losing their independence, pain, what will become of
their loved ones and more

Oftentimes engaging with others just takes too much energy.


50

Confusion about time/place/people (4)

The awareness of a dying patient may fluctuate. Some patients are completely lucid right up until
they die, others may get confused about time, place and the people who are surrounding them.
This is absolutely normal and sometimes caused by the patients medications, fevers etcetera.

A lot of people slip into a semi coma/coma before they die.

Some people believe that the patient is checking out the other side so to speak then returns,
goes back again etc. and therefore gets confused about his or her whereabouts.

Patients may also be completely lucid right up until they die.


51

Decreased appetite/thirst (5)

Decreased appetite/thirst

As the patient moves closer to death, the triggers for thirst and hunger will diminish and
eventually even disappear. Because this trigger goes away completely, the patient is not
suffering from hunger or thirst. The body is shutting down its systems one by one and is no
longer able to process food and water as well as it used to.
It is important that this gets explained to the patients loved ones as they often take this process
as a personal grudge that the patient may have against them.
You may hear the questions Why wont she drink for me? or I made his favorite meal; what
did I do wrong for him to refuse this? A clear explanation may relieve the loved ones from
feeling hurt and rejected and a patient from feeling guilty. (patients sometimes will try to keep
eating because they dont want to disappoint their loved ones.)

It is highly advisable to NOT force food and/or fluids on a patient as it is very uncomfortable.
Besides that, in a patient with tumors for example, the nutrition would not necessarily be
dispensed to the greater good of the patient; it more than likely would just serve as fuel for the
patients tumor(s). As the cancer cells have a much higher metabolism and are more aggressive
than regular cells.

Thirst is a sensation of the mouth so it may be nice for the patient to suck on some ice chips
and/or have her mouth moistened with a swab.

*Loved ones can make popsicles by sticking skewers in water and freezing them. they can then
hold on to the skewer while the patient sucks on the ice this may be safer than having loose ice
chips in the patients mouth.













52

Decreased ability to swallow

The patients ability to swallow will decrease and the risk of aspiration may be very high.
It is a normal physical reaction and it is one of the reasons why patients stop eating/drinking and
why you should NOT give a patient anything to eat or drink.

A caregiver or staff member may do so, but do NOT do this yourself!

It is also one of the reasons why the nurse may decide to give patients medications in a pocket in
their cheek; this is an ideal place for them to be absorbed into the patients system and it prevents
the patient from choking.

Patients who suffer from Alzheimers disease often completely forget how to swallow.


Weight loss/wasting


It is very normal for a patient to lose weight rapidly and intensely
when getting closer to death.

The body systems slow down so the patients appetite decreases and
there is no real need for food and/or water.

Certain medical conditions may cause weight loss as well.

53

Eyes/vision and jaw (6)

Eyes

A patients eyelids overall become more relaxed as one
progresses further into the dying process.
This may cause for the patients eyes to be wide open at
first, looking around very alert.
At some point the patients eyes may become fixated on
one specific point in the room

(A loved one described it once as that his father looked
zoned out).

Later, they may close halfway as the patients body relaxes and the patient starts to go down in
his/her level of consciousness. For a lot of patients, this is the way the eyelids remain until they
die, although there are patients who fluctuate between these stages of open or shut eyes.
Basically any stage is normal and I have seen loved ones try to open or close ones eyes, but
usually it is the patients body that dictates their state.

The only vision problems which patients mentioned to me while providing transition care is that
the patient complained of seeing blurry.

A patients eyes may become uncomfortable when being held open for a prolonged amount of
time, so you may suggest that the caregivers apply some artificial tears.

Jaw may relax

With a lot of patients, you may see that their jaw may relax, causing for the mouth to fall open a
bit. During the dying process, its overall not recommended to try to close the patients mouth as
it will more than likely open up again. It is perfectly okay, but I do ask loved ones to keep
moistening the patients mouth and lips for the comfort of the patient, and it is also a good
opportunity for loved ones to feel needed and involved.


54

(7)

On occasion the patients neck extends fully


I have encountered a few times where the patients neck extended more and more as he or she
gradually proceeded further in the dying process. Sometimes even to the point where the
patients crown of the head would come off the pillow. This didnt really seem to bother these
patients, but I always tried to make sure that their heads were supported as well as possible.
This is not something that I have encountered very often.


Relaxed earlobes/ear


You may see the same principle with the patients earlobes
and/or complete ear; when sticking out a little bit normally,
they may now completely relax and lay flat against the head.
This is not something that I have encountered very often.

Always remember that the patients hearing is the last of the
senses to be lost.

55

Urine output, incontinence and swelling (8)

Urine output

As the body continues to shut down its systems, so become the kidneys shut down as well.
As this process progresses, the patient will show significantly less urine output and the urine will
become darker as well because the patient is drinking less which will cause the urine to become
more concentrated. You may get questions from loved ones about this because the patient may
have a catheter in place and the bag that is used to collect the urine is usually hanging visibly on
the side of the bed.


Incontinence

Even though the patient stops eating and drinking because they are dying, the body still produces
waste. Near death and most certainly after death, patients may become incontinent of urine and
bowels. Keep in mind that this may be a sensitive issue for the patient and/or loved ones.

56

(9)
Swelling/Edema

Because the kidneys filter less, fluids build up and are
dumped far away from the heart such as the ankles, feet etc.
Diuretics are not effective because they cant reach the
swollen areas so they would cause dehydration and would just
make the patient have to go to the restroom a lot. Therefore it
may be better to decrease the patients fluid intake. Applying
some lotion may help a patients swollen/stretched skin.




Certain forms of cancer (such as cancer of the colon, pancreas,
stomach etcetera.) may cause swelling of the abdomen.




Sometimes a patients abdomen may appear swollen (distended) due to constipation which may
be caused by decreased activity, decreased food and fluid intake and/or as a side effect of the
patients medication (pain medications such as morphine often cause constipation).


End stage cardiac disease may be the cause of swelling as well, usually of the feet and/or ankles.

57

Temperature (10)

Due to changes in the brains thermostat, a patient may alternate between hot, cold, clammy etc.

As the heartbeat becomes weaker, the patients blood may not be pushed through the veins and
arteries as efficiently as needed. The body tries to counteract the failing circulation by pooling
blood around the vital organs of the body and therefore the extremities may feel much cooler to
the touch than the patients trunk.

A part of the dying process makes that the patients extremities become cold.
This happens because the blood circulation gets primarily utilized to provide oxygen to the
bodys major organs, and so therefore there will be a lot less blood flow to the arms and legs.
Sometimes it is hard for loved ones to understand that the patient really is dying because the
patients hands do not appear cold to them. They will say: no, she feels fine!
So you may have to point out that the patient has a warm hand because they have been holding it
for a while
58

(11)

The patients temperature may also rise due to dehydration. If that is the case, there is no use in
giving the patient antibiotics. A cool cloth on the patients face, armpit, and neck and/or groin
area may help, as well as some over the counter suppositories.


Sometimes wiping down a patients arms with some ice cubes in a
washcloth may help, but NEVER put ice directly on a patients skin
and never hold it in just one place!



A patients temperature may rise quite a bit.
Caretakers a lot of times want to tuck their loved one in with a warm blanket but overall, just a
sheet is enough. Often, the patients extremities may feel cool because of a lack of blood
circulation but their trunk is hot. Check that the patient does not have too many blankets and if
needed, suggest that the excess of blankets be taken off and explain why.


Also, make sure that if the blankets get taken off the patient;
that they do not get all bunched up on the patients feet or anywhere
else on the body; this creates heat and is very uncomfortable.

Besides that, blankets that are resting on a patients toes can create
pressure points as well.

59

Blood pressure, heart rate, seizures and pain management (12)

Blood pressure

When the patient is dying, the blood pressure may fluctuate but
it will overall drop when death is imminent.

Heart rate

The heart rate of a dying patient fluctuates as well, but will go up when death draws near.
When the nurse notices a heart rate that is consistently at 120 BPM (Beats Per Minute), it is a
good indication that the patient will more than likely die within a few days to a week.
As volunteers we do not need check a patients pulse but every now and then I feel how strong
the patients pulse is and I usually do this very casually and subtle. Overall it is just easiest if you
leave taking the patients pulse over to the nurse.
If you wish to take a patients pulse, be aware that that is not always the optimal place to detect a
heartbeat. You could possibly alarm loved ones needlessly if the patients heartbeat is very faint.

Seizures

Patients who have suffered strokes, brain tumors and/or metabolic diseases may experience
seizures. Sometimes fevers and/or changes in the patients brain may cause seizures when the
patient gets closer to death. The only thing that you can do as a volunteer is keep the patient
comfortable. Do NOT put anything in the patients mouth to prevent him or her from biting the
tongue! If the patient is lying in a hospital bed, ask it to be lowered. Call the nurse to inform her
that the patient has seizures and to ask for advice. Seizures may be intimidating to loved ones so
make sure that you remain calm and confident and provide them some comfort.

60

Pain management

Explain that not all who are dying are in pain.
Pain management is based on staying a step ahead of the pain and thus preventing that the patient
ends up in a pain crisis.
Some patients may experience no pain, others do to variable degrees. Remember that a patients
pain is what the patient says it is; there is no way of telling in how much pain somebody really is,
one cant compare pain and it is also not our job to assess ones pain level.
You may contact hospice if you suspect that the patient is in a great deal of pain but you should
ask the patient for permission to do so first.

The level of physical pain involved with the dying process is often something in which a patient
can have a lot of say. Some patients wish to have as little pain as possible but they still wish to
remain lucid and able to talk with loved ones.

Other patients may opt to be completely sedated when their pain gets to be unbearable for them.
Whatever the patients wishes may be, the hospice nurse will overall try to accommodate them as
good as possible within the limits of the law.

The choice of pain management may be culturally influenced; in some cultures enduring pain
shows a sense of strength and/or endurance.

There are also patients who are worried to become addicted to pain medications.
Loved ones sometimes worry that the patient may become addicted to the pain medication as
well. It is very normal for the doses of pain medication to have to be adjusted as the illness of the
patient progresses. If the patient or loved ones are worried about addiction, you may point out
tactfully that there is a big difference between drug tolerance and drug addiction.
Offer to contact the nurse to ask for an opportunity to have this explained in detail and always
report these kinds of conversations to the nurse or your volunteer coordinator.

Some patients refuse pain medications as a form of atonement for past sins.














61

Sometimes patients may stash their medications:

I have worked with one patient who was stashing his pain medications; he had lived quite a
rough life, many years on the streets, and was still holding on to the hope of beating his cancer.
He stashed his pain medications as a back-up currency to be saved up for when he would
return to the harsh life on the streets. He was also using it as a trading currency with other
residents in the building where he was temporarily living.

Another patient I worked with, was in a lot of pain on an almost continues basis but stashed her
pain medications because she expected that her illness was going to get a lot worse soon thus
causing her a lot more pain. Patients like that will stash their medications for when they
really are going to need it.

Needless to say that you ALWAYS have to report incidences like this to hospice.

It is very important to stick to the scheduled intervals of administering pain medication.
They are carefully calculated by the nurse to make sure that the patient receives the next dose
before the former dose wears off completely.
If a patient gets restless and/or grimaces or moans when it is about time for her next dose of
medicine, consider that his or her medication level may need some adjusting. If you ever suspect
that this is happening, contact hospice immediately. Usually there are medications available at
the residence or facility to deal with that it is called breakthrough pain. The nurse can advise
loved ones what to do or, at a facility consider changing the patients doses and/or medication(s).
So OBSERVE! You could possibly prevent a patient from going into a pain crisis.

A name that you may hear for a medication that is used for pain management at the end of life is
Roxanol; a type of morphine which may be administered to the patient rectally or orally.

NEVER administer any form of medication to a patient!

While you are waiting for the nurse or until the medication starts working; maintain a calm,
confident atmosphere and try to distract the patient if needed.















62

Emotional pain and spiritual pain

There are many different levels and types of pain. When speaking of pain, most people only
think of physical pain while other kinds, such as emotional pain seem to be forgotten.











Regardless of what kind of pain the patient is experiencing, counseling is available through the
hospice.

If a patient seems to struggle with emotional pain such as regrets and/or guilt, contact a hospice
social worker who can take it from there.

If you feel that a patient is struggling with spiritual pain such as fear of going to hell, afterlife,
penance etc. contact a hospice Chaplain.

Patients may not be the only ones who may suffer from spiritual pain:

I was providing transition care with a woman and her mother who was dying.
The daughter seemed exceedingly nervous as the patient came closer to death.
When I carefully asked her if she could share with me what her concerns were, it turned out that
she was extremely concerned about what would happen to her mother after the patient would die.
A friend of the family had told the patients daughter that the patient would surely go to hell
because she didnt confess her sins before she died.
This horrified the poor daughter because the patient went into a coma unexpectedly and
remained in a coma for eight years and thus didnt have a chance to repent.

Of course, I offered to call the hospice Chaplain to speak with the daughter about this.
She agreed to that and was very much relieved after speaking with the Chaplain, which allowed
her to be fully present with her mother during her remaining hours.

I have only heard of one case (during one of the volunteer trainings I have attended) in which an
organization granted a patient what they called palliative sedation.
This involved a patient who was a highly intelligent woman who was losing her cognitive
abilities. It was unbearable for her to witness her own decline and she requested to be sedated
until her time of death, which was granted to her.
This patient basically fell into an induced sleep and never woke up.

63

Breathing patterns/Cheyne-Stokes breathing (13)

When you visit a patient for transition care, you may encounter many different breathing patterns
as the body continues to shut down. The patient may be breathing very normal at first and then
alternate between different patterns of breathing; deep, shallow, fast, slow etc.



Some patients receive oxygen right up until they die.
This may help the patient breathe easier, but it does not prolong
life! If a patient experiences breathing difficulties you can try to
use a fan to move the air in the room around a little and in order
to conserve energy, try to encourage a patient to not speak more
than is absolutely necessary and notify the nurse.



When a patient gets closer to death he or she may start what is called Cheyne-Stokes
breathing: a persisting waxing and waning in the breathing pattern. It often starts with a loud,
deep, sighing breath that sometimes sounds like a snore. This is followed by a breath with a lot
less volume and noise and that one is followed by a series of even lighter breaths until no more
breathing is seen or heard.

Then a pause in breathing occurs; this will be short at first, and the patient will take another loud,
deep, sighing breath and the process starts over and turns into a cycle that the patient will keep
going through.

While going through the cycle over and over, the shallow breaths will get shallower and the
periods with no breathing at all will grow longer until the patient dies.

It has been shown that Cheyne-Stokes breathing is not bothersome to the patient.

When the periods of no breathing occur, it may cause a lot of tension in the room between loved
ones because it may appear to them the patient is struggling and/or suffocating.
Therefore, I delicately educate them on Cheyne-Stokes breathing when I notice it firsthand.
I explain what Cheyne-Stokes breathing is and when the patient stops breathing, to allow some
time before assuming that the patient has died to make sure that they are not wrong about that
when the patient starts breathing again.
That way they often feel more confident about what is happening and what is going on with their
loved one and they usually tell me afterwards that it really helped them.

64

Do not be too quick to assume that the patient has died after his or her breathing stops.


Whenever the patient is getting close to dying, the loved ones are not only going to really
observe the patient closely, but you, the volunteer as well.

J ust because you are with hospice, they more than likely are going to assume that you are the one
with the knowledge here. When the patient stops breathing, they are going to look at you to tell
them that their loved one has died.

When the patient experiences longer periods with absence of breath, the loved ones may become
anxious. When I suspect that the patient is very close to death, and a big period of not breathing
happens (longer that 20 seconds) I put my finger on my lips quietly as to say shhhh and I point
to one of the big blood vessels in the patients neck. These blood vessels located at either side of
the neck are usually throbbing very prominently so when you point that out to the patients loved
ones, you give them something tangible that they can focus on in assessing where the patient is
in the dying process.














The reason why I make the shhh gesture is because sometimes loved ones start to panic in that
moment and may start talking loudly to a patient and I will have explained upfront to them that
in my experience it is best not to disturb the patient during that last sacred moment.

A lot of the patients for whom I was privileged to provide transition care, started breathing very
rapidly but very shallow right before they died.
65

Cheyne-Stokes breathing: a closer look (14) video segment

Slide 14 contains a video segment in which I try to physically show you what Cheyne-Stokes
breathing may look like as well as a few helpful hints on how to gauge where the patient is at
within the dying process and how to gently guide the patients loved ones.

66

Congestion/Death rattle (15)

Due to labored breathing and a relaxing of the body, a patient may build up congestion.
The patients cough reflex will reduce and therefore some fluids may collect in the back of the
throat.

A healthy person will just clear his or her throat but a
dying patient is overall too weak to do so.
When the patient breathes, the phlegm produced by
the patient may move up and down the windpipe
and/or vibrate against the vocal chords and this may
produce a more or less gurgling sound.

This sound can get pretty loud and is known as the
death rattle.
Research has shown that this is not bothersome for the
patient and it also does not mean that the patient has
fluids in the lungs. Loved ones however, are often
greatly bothered by this sound. Someone told me
once: this sounds like she is drowning or choking.

It is of great essence to comfort loved ones and to
delicately explain to them what they are hearing and
why.

It may help quite a bit if you raise the head of the bed
and overall that is what people will advise you to do.
In my own experience however, it sometimes helps to
alternate between lowering and raising the patients
head by changing the position of the bed or by
providing the patient with an (extra) pillow.

The nurse may also provide a patient with some medication which will help dry up these fluids.
You may encounter the names of the following medications: Scopolamine this is a long acting
medication which is provided in the form of a patch behind the patients ear and/or Atropine
this is a more short acting type of medication which is administered to the patient in the form of
drops deposited under the tongue.

Suctioning the patient is not advisable because it irritates the patients airways which in turn may
increase secretions and also because it is a very uncomfortable procedure.


Comfort
Scopolamine
patch
Atropine
drops
67

Skin color/Mottling (16)

Throughout the process of actively dying a patients skin color may vary greatly; you may notice
skin becoming pale, yellow, grey, red, and bluish a lot of different combinations are possible
and there is not necessarily a given order in which these color changes take place.

A patients skin and eyes may appear yellow (J aundice) for instance, as result of liver disease.


Places to watch for discolorations are the fingernails,
toenails and lips; they may turn a bluish-grey.
This is called cyanosis and it is caused by a lack of
oxygen in the patients blood supply due to a
diminished blood circulation.


This may be a bit harder to detect in people with a
darker skin tone.


Besides that I have seen many patients who when they were very close to death presented with
an intense paleness especially around the nose and mouth. Sometimes these areas may turn a
grayish-blue as well.

As one progresses in the dying process, a very specific discoloring of the skin may appear: a
blotchy, bluish gray pattern. You may find it first at pressure points such as on the patients heels
if he is lying on his back or on the patients toes and at the end of the extremities.

This is called Mottling.

Mottling is an irregular or patchy discoloration of the skin caused by changes in the blood
vessels near the end of life and occurs when the body restricts the range of circulation by
preserving the blood for the bodys major organs such as the heart and lungs.

Then as the patients heartbeat becomes weaker the patients blood is not pushed through the
arteries and veins as efficiently as it would in a healthy patient. As the blood circulation is
restricted the patients hands and feet may become cold and may display some mottling.

Because of the specific pattern that mottling presents, it is overall very recognizable.
Mottling can be variable in darkness depending on how far along a patient is in the dying process
and may also be influenced by the patients skin color.

A lot of times, you will see that the mottling creeps up i.e. it will progress from the patients
heels or toes up the legs or from the fingers, up the hands and arms. Sometimes I notice the early
signs of mottling on the patients ear, if he or she has been lying on it.
The more mottling progresses, the closer the patient overall gets to dying.

68

Mottling: How does it look? (17)

Although mottling is very recognizable when it occurs, I included some pictures of the
phenomenon of different body parts and different skin tones just so you may have seen images of
it before you actually encounter it.

Thesightofmottlingmaybedisturbingtolovedonessometimes;ifthisisthecase,
onlycheckonthepresence/progressionofmottlingwithtactanddiscretion.
69

Last hoorah (18)

A lot of times a person who is getting close to death will have a few wonderful hours or
sometimes even days with quite some different energy than he or she has had in a while.
All of a sudden their energy and/or interests seem to be back! It is almost like they have found
the proverbial second wind.

People can get really confused about this behavior because sometimes it almost looks like their
loved one will get better after all. It is often the first sign of the actively dying stage

Example:

I was asked to visit a patient who had been depressed, not eating, not talking etc. and he
appeared restless. When I met him, he was sitting with his back to his daughter, basically
refusing to engage with her and ignoring her. When I introduced myself and started asking him
about some of the passions he cherished earlier in life (he was an avid landscaping architect) he
suddenly lit up and started telling me stories and asking me questions about what plants we
should get for the mansion we were building. It soon became clear that this man was confused
about where we were, but I decided to go along with his reality.
So, that day we discussed how many rooms to build, how the grounds would look and we even
went outside! We had lunch together and he talked and did more than he had done in quite a
while It brought his daughter a lot of consolation. Happy but surprised she saw a side of her
father that day which she had not seen in a long time. This patient slipped in a coma that same
night and passed away a few days later

As an outsider it was a lot easier for me to go along in the patients journey as I did not have any
preconceptions of how the patient used to be. It is sometimes really hard for loved ones if the
patient is not in touch with reality and it may be even harder for them to react to that.
As a volunteer you may be able to step into a role that may help settle down a restless patient.
For me personally it was not only incredible to see this patients interests return but it was also
amazing to witness how this gentleman (within the same visit) accepted me as his friend, his
wife, his colleague, the foreman at the building site and the clerk of the greenery incredible!














70

Terminal agitation

There are patients who get really agitated when death draws near. They may become restless
and/or combative. We can try to find out what is going on but do not always find a reason that
would make sense to us. A lot of times it has to do with incidents from a patients past, issues
that they still have to work through.

Example:

I was visiting with a lady with dementia and she seemed restless. As you go along in a patients
journey you try all kinds of things to keep them comfortable. As she didnt quite respond to
being talked to, I decided to softly sing for her. I shared one of my favorite lullabies and almost
as soon as I started singing she turned towards me. I kept on singing; she turned again and
seemed to be saying something. I asked her: are you okay? She said: I love that!
Can you keep singing? I was happy to oblige but she seemed to become sad!
Now that of course was not what I had intended! I thought about that while I was singing and
decided to ask once more: are you okay? You seem a bit sad She looked at mehesitated
a moment and said solemnly; I couldnt reach them, you know I couldnt reach them...
Who couldnt you reach? I asked. She mentioned some names and some other things that
didnt quite make sense to me and then she asked me to keep on singing only to keep repeating
that she couldnt reach them.
When her loved ones returned we discussed this and they were very happy that I mentioned to
them what had happened. They knew that the patient was struggling with something but didnt
know exactly what it was and therefore they didnt know how to help her.
The combination of a lullaby bringing out her emotions led them to believe that the patient was
struggling with the fact that she had lost two young sons very close in age and very sudden.
The fact that she kept mentioning that she couldnt reach them was tied to the fact that they both
took their own life and the loved ones believed that she meant that she wasnt able to reach them
emotionally when that happened. The patient had never spoken of the sons ever since their death.

As a volunteer it can be frustrating to witness a
patients struggles because you would like to help the
patient with this but you cannot always do so.
Remember that it is not your job to fix something a
patient may have been struggling with for a lifetime
it is their job to work through it, and that is okay;
most patients eventually do so and die peacefully.
In this case I was able to help after all by helping the
patients loved ones put the pieces of her struggles
together.

In some cases the patient may be agitated because he or she is uncomfortable. Therefore it may
be helpful to check if the patients sheets are bunched up underneath the patients body.
Or maybe the patient is experiencing breakthrough pain and needs an adjustment in medication.



71

Some patients may become combative

It may be hard sometimes to figure out what is really going on in a patients world but you still
give it your all to guide him or her to the best of your abilities. I would advice you to carefully
listen to the patient but above all to watch his/her facial expressions and or body language very
carefully. It also may help if you know a bit of the patients history.

Example:

A patient was restless and combative and his loved one truly needed a break.
We knew upfront that this patient could become aggressive at times but we devised a plan to try
to work around that. We were in the fortunate position to be able to visit with three volunteers at
once to be utilized for this patient visit. We first spent some time with the patient and his loved
one together until she gained the confidence to leave for a bit. (It is hard enough to see your
beloved struggling especially when his or her perception of reality has shifted let alone leaving
him/her in the care of strangers) Then, through careful observation of the patients facial
expressions and body language combined with what we knew of the patients history we
managed provide this patient with a nice afternoon utilizing Sanskrit chants (this patient was a
Buddhist) reiki and careful compassionate touch. It was very fulfilling to see him calm down and
to see how his loved one reacted when she returned from taking that much needed breather.

72

Near death awareness (19)

When getting closer to death patients may seem to be aware of
people who we do not necessarily see. They may start
pointing and/or looking and talking at persons who have
preceded them in death, sometimes they seem to be seeing
Angels, objects or Holy figures or different entities. Patients
may be talking coherently, mumble or sometimes just move
their lips without producing any sound.

This is very normal for a patient who is actively dying.
I usually validate what they see; who am I to say that these
entities arent present? Overall I ask people what or whom they see and since this is absolutely
real to them patients will answer you most of the time if they are still verbal.

If that is the case my advice would be to write down what the patient is telling you especially if
you happen to be alone with the patient: it may not necessarily mean anything to you or the
patients loved ones at this point, but it also may be treasured by them at a later point in time.
It may be comforting for instance to know that Uncle Bill came to get their loved one.

Example:

A patient who was actively dying had been very quiet. At one point however she suddenly
livened up and started talking to me as she pointed slightly forward:

Oh wow, I can hear him, hes talking to me! I asked her: who is talking to you?
She replied with a name of a loved one who had passed a long time ago. Then she said: Look!
Theres more; theyre all here! Should I go with them? I answered that that was her choice; if
she loved them and trusted them it would probably be okay to do so. She somehow managed to
lift herself slightly off the pillow waved her hand at me smiled and said: Bye guys!!!
After that she laid down her head and died. These moments can be so very magical!

I do have to offer a word of caution here too though:

It is imperative that you gauge the situation in the room and the status and frame of mind of all
involved. Not everybody is open to this phenomenon.

Sometimes loved ones may be afraid that the patient is doing these things because the he or she
got drugged up. There are also people who are afraid of things that lean towards the unknown
or paranormal if you will.

Last but most certainly not least: there are people who based on their belief system, may think
that the people/animals/objects and/or religious things that patients experience/see on their
deathbed, are really disguised attempts from the devil to lure ones soul over to the dark side.
Whichever reaction the patients visions/dreams etc evokes, try not to judge and stay respectful.

73

CHAPTER FOUR (1)

Contents:

What can you do for a patient? (slides 2 & 3) pg. 74-81

Being mindful (slide 4) pg. 82-86

What else can you do? (slides 5 & 6) pg. 87-91

Unresponsive patients (slide 7) pg. 92

Loved ones pg. (slide 8) pg. 93

More helpful options (slides 9 & 10) pg. 94-99

Children (slide 11) pg. 100-101

Pets (slide 12) pg. 102
74

What can you do for a patient? (2)

Provide a calm comforting atmosphere


Carry yourself in a calm, humble yet confident manner and most people are likely to follow your
energy. If there is too much commotion going on around the patient or when people are arguing;
politely and with tact ask them to take it elsewhere.


Example:


I was visiting a patient for eleventh hour support who happened to have a lot of people visiting.
There is nothing wrong with that in itself, except for the fact that at a certain point there were a
lot of people in the patients room and they were only talking amongst themselves. Then the
television got turned on loudly and there were people sitting on the edge of the patients bed,
facing away from the patient who by then got mostly ignored. All the commotion seemed to
interfere with the patients ability to have a peaceful transition so after having a conference call
with my supervisor; I was instructed to ask most people to leave the residence so the patient
could rest. Honestly, I was a bit shy to do so but as I represented hospice they were all very
understanding and the patient had a peaceful death.



75

Be with the patient, not near

Anybody can be near a person; and sit with him or her
but being with someone is different.
There is a distinct difference between the two so try to
truly be alongside the patient where he/she is in life
regardless of circumstance and without judgment
and/or expectations with only one goal in mind:
providing a peaceful transition.

When you are truly with someone, beside them, you
just may be surprised at how easy and yet fulfilling
this process truly can be.





This leads us to the misconception that you have to have all the answers.
Sometimes we may think that dying people are going to expect that we have all the answers or
that everything we say has to be profound. In reality the opposite is true; you truly do not have to
be profound at all! The main thing is that you are genuine.
If a patient asks you a question and you do not know an answer: just say so.
Isnt that what we all deserve anyway?
If it is a question about something that is feasible for you to obtain the answer about you can
always say: I do not know at this moment, but I can try to find out for you.
But in that case follow through.

Example:

A Chaplain from the hospice is supposed to come over and the patient forgot when

You can then try to call the Chaplain or the hospice to find out for the patient what time the
Chaplain plans to be there.
Key is to make sure that you emphasize that you will try to find out. In a hospice setting people
can be extremely prone to pick out a commitment from volunteers and staff.
This way if you cannot reach the Chaplain you still kept your word.
Make sure you follow through; it is easy to get distracted by phone calls etc.
A hospice patient often may feel powerless or in certain situations ignored even.
By you simply acting on what you just promised you allow a patient a bit of power and the
feeling that you truly care and that he or she really matters.



76

Observe!

What does this patient respond to best and what would be beneficial for a patient to omit?

Some patients would like their hand held. Others pull away so then you know that this patient
may prefer not to be touched.

When you hold a patients hand; make sure that it is not in a position that may become
uncomfortable for the patient and if the patient is on oxygen make sure that you, your chair or
your feet are not accidentally blocking of the patients oxygen supply (this may sound obvious
but it happens as the oxygen tubing is quite long sometimes).

Pay close attention to family dynamics and report early bereavement concerns to the
bereavement coordinator(s) of the hospice the sooner they know what to expect the better they
can prepare to help the patients loved ones.

Another important thing to watch for is if the patient displays any signs of discomfort or pain.
There are a lot of nonverbal signs which can point to pain or other forms of discomfort.
This can be anything from frowning or grimacing, to repetitively keeping on touching a certain
body part, moaning, squirming etc. Pay close attention to that and alert staff if you think the
patient may need any adjustments.

Make sure the sheets or night wear are not all bunched under the patient; this happens easily with
a patient who moves around a lot and can create pressure point really fast, which can be the
cause of bed sores. Never correct this yourself ask facility staff when we get older the skin
becomes a lot thinner and more sensitive; it is very easy to literally tear a patients skin!

How does the patient respond to music? Music can be soothing but sometimes it can tie a
patient down and prevent him/her from dying, especially when it is very familiar music.












I always try to find out how a patient reacts to complete silence that too can be an option of
something that patients may need/desire. Sometimes I sit back and pretend to be reading a book
to give the patient the feeling of some sort of privacy in case that is what he or she needs.
I still keep an eye on him/her by peeking over the edge of the book periodically.

77

Often, I leave the room completely some patients just want to die alone.
I will not leave for a long time and sometimes I keep an eye on the patient from the hallway.


Example:


A patient had an extremely loving and close family who surrounded him daily around the clock.
Every time he got close to death, his loved ones gathered around the bed and they all spoke to
him and were touching him. Every single time the patient bounced back from actually passing
away. After this happened numerous of times, it occurred to me that this patient perhaps was so
close to his loved ones that he had a hard time letting go.
I suggested this to some of the loved ones. They said that they thought that I may be right, but
they all still remained at the patients side. At a certain point everybody just got exhausted and at
that point I gathered some of the family members once again and asked that they please trust that
I know what I am doing and that my training and experience with the dying guided me into
strongly believing that the patient needed to be alone to be able to die.
They did not want for the patient to be alone so we compromised: only one family member
and I remained with the patient while the rest of his loved ones went to bed.
This patient died within ten minutes of this happening!


Acknowledge


Dying is not all that different from lots of other things in life when it comes to
acknowledgements. Oftentimes when people talk to you about things that are going on in their
life that may be difficult and/or challenging, they dont want an answer or a solution from you;
but rather an acknowledgement. Therefore, a heartfelt yes, I can see that that would pose a
challenge often goes a long way

78

(3)

Support


The biggest form of support is simply being there for people.
A listening ear may do wonders it is often all people really need.





Offer concrete help; would you like some coffee? and follow through with it
Overall, if you ask if there is anything you can do in general, most people will say no.



79

Maintain


You can help maintain the patients dignity:

An important way to help maintain a patients dignity is to at any given time when you provide
care (like straightening the patients blankets for him/her) always identify yourself and the
patient by name before doing anything. This maintains that you are caring for a human being
versus acting in a routine way. (Always go by your hospices guidelines and always ask the
patients permission and explain what you are doing, beforehand!)

If a caregiver forgets to explain what they are doing with/to the patient, do it politely for them:
This is She is going to give you a bed bath so you will remain nice and fresh.

Sometimes people get caught up in their work and need a gentle reminder that the patient dying
or not, still deserves to be treated like a human being. Oftentimes I point out to the staff how nice
it is that they always identify upfront. Then I do that with every staff member that walks in and if
they have slipped into automatism it gently reminds them that they really should do this at all
times. For the ones who already do a great job where this is concerned, it is a nice compliment.
It also lets them know upfront that you are paying attention to their work and that you truly care
about the care that is provided to this patient.

Protect patients dignity;

A lot of patients fidget or move a lot if he/she exposes himself or herself, put the sheet or
gown back in place immediately. If this happens often, I close the curtain around the patient or
the door, while still keeping on putting it back into place. If a patient keeps fidgeting with his or
her gown (some patients pull the gown up and are exposing themselves that way) I gently replace
the gown in his or her hands with a piece of sheet.

In light of preserving the patients and loved ones dignity, I try not to use the word diaper
which may carry a rather embarrassing context for adults. I prefer to use the word garments or
undergarments.

Dignity in death is just as important as dignity in life.
For patients for whom it used to be important to look perfectly
groomed during everyday life, it may be helpful to keep their dignity
intact if staff members or loved ones keep up their appearance by
making sure that the patients hair is brushed, the face is shaved and
for females that lipstick is applied. Unless this would interfere with the
patients dying process there is no reason why this would not be
appropriate to maintain at the end of life.

80

Advocate:

One of the tasks of a transition care volunteer is to ensure that the patient stays as comfortable
and well taken care of as possible. Part of that is to let hospice, loved ones and/or staff members
know if the patient needs something.

It is standard procedure that a patients position gets changed every two hours to prevent
pressure points in the patients body which in turn can cause pressure sores.
Sometimes however it interferes with the patients dying process and if you ever suspect that this
is the case you may tactfully bring this to the attention of a staff member of the patients care
team and suggest a change in the time of the intervals. Most staff members appreciate this very
much because they just do not have the kind of time available to spend with the patient as a
volunteer often does but they do want the best care for the patient.

Be tactful, but never hesitate to advocate for the patient.

Example:

I noticed that somebody was using extremely rude language and bedside manners with a patient;
I immediately reported this to hospice and protective measures were put in place right away.
It is a sad fact that these incidences happen but you are in a position to help protect patients
rights when they cannot do so themselves or are afraid to do so themselves.

81

Eliminate background noises/excessive light if needed

Eliminating disturbing background noises is sometimes as easy as shutting a door!













Your observations will tell you if background noises are disturbing to the patient but sometimes
background noises are a good thing.

Example:

If a patient for instance is used to falling asleep while having the television on, I will sometimes
suggest that we do so as well during the patients vigil. Loved ones may be able to inform you of
his or her habits regarding subjects like that. Ive utilized this on quite a few vigils and it seemed
to help the patient make a more peaceful transition. My assumption as to why this happened is
because these patients were experiencing normalcy in their routine

Adjust the lighting around a patient: sometimes it is nice for a patient to have the lights dimmed
a bit to create a calm atmosphere. In a facility setting I would use an indirect light such as a light
over the patients sink. At a private residence one has to make do with what is available

In a facility it may help sometimes to filter out excess light by closing the curtain around the
patients bed.

Patients whos night and day rhythm is disturbed (like some people who suffer from Alzheimers
disease for instance) may benefit greatly if you mimic daylight; it is less confusing to them.

The same may be true for patients who suffer from hallucinations sometimes certain shadows
in their room may appear threatening to them; being creative with what kind of lighting to use
may lower or even eliminate certain anxieties concerning the patients fears.

82

Being mindful (4)

Mentioned here are some reminders about being mindful, followed by examples of things that
may benefit or hinder a meaningful conversation


- Be mindful, do not be distracted by phone, clock etc.
- Try to avoid saying things like: you should, you shouldnt or just
- Watch your body language: no crossed arms, rolling eyes. Look people in the eye and
show that you are present with them.
- If a patient declines to talk about something; do not push
- Why questions tend to make people defensive because it may feel that you are judging
them.
- Do not interrupt the patient!
- You are not in control or in a position to manage ones journey. Do not try to resolve
issues that a patient may have been struggling with for a lifetime remember that it is
their journey
- Understand that you cannot fix everything.

























Being mindful also means making sure that your own boundaries are being honored as well!

83

Reminders of things that may promote a mindful conversation:

Listen, do not interrupt, and be sincere.

Encourage a person to share more by using short statements such as: go on, I see, tell me more
Nodding may help to encourage people too.

Encourage a person to think about different kinds of options:

Have you thought about how to?
How can we solve/achieve this/make things more bearable?
What would be of help to you/to achieve your goal?
How can I help?

Confirm/restate: I get the impression that this is hard for you, would that be a fair statement?
The fact that your father is not eating seems to concern you.

Nonverbal

Eye contact, a quick touch and or holding hands make the person aware that you are paying
attention and that you care. Make sure you have an open posture

Allow for silence it gives people the idea that you are actively listening and carefully choosing
your words.

Body language; watch for frowning, crossed arms, tears etc.

84

Reminders of communication barriers:

The following statements/actions may cause people to shut down:

Dont worry, itll be okay, dont be ridiculous/ that is ridiculous, whatever, forget about them,
who cares.

Do not argue or add fuel to peoples anger:

Oh no! How terrible! How could they do that!

Dont make assumptions: I know how you feel, been there-done that

Dismissals: you dont mean that, dont be silly, you know better than that, dont say that.

Clichs: shes in a better place, at least he wont have any more pain, at least you had some
time with her, luckily you still have other children.

Negation: should, shouldnt, cant and may not may take away a persons sense of control.

Body language: no crossed arms, open posture, no rolling of the eyes, no daydreaming or getting
distracted by a telephone, back ground noises or a clock, no slouching.

Crossed arms and a
frowning face
dont quite convey
compassion!
85

Reminders of platitudes NOT to be used:

That happened a long time ago.
Im sure they have forgiven you/understand.
You were just following orders.
J ust forget about them.
You were just a child.
She is in a better place now.
It was his time.
It was Gods will.
You can always have another child.
I know what you are feeling.
At least you didnt get to know this baby first and got attached to it.
Whatever.
Who needs them?

86

Reminders of more diplomatic statements:

I know about grief, but I dont know about your grief.
Sounds like you have a lot of love in your heart for
I wish I had something profound to tell you, but I dont.
It seems like things are really mounting up for you.
I can imagine that would feel overwhelming/frustrating/difficult/scary.
I am not sure how I can be of help, but I am willing to listen.
Is there anything that I can do to make things easier for you?
May I make a suggestion?
One moment please.
How can I help?
Excuse me.



87

What else can you do? (5)

Sit in silence


The number one action of all things of what you can do for a patient is the action of being.
Period, thats all. J ust your presence is a gift in itself

Sometimes, the act of just sitting there can be disconcerting for volunteers, loved ones and/or
staff members alike; more often than not, they feel like they are not helping the patient and his or
her loved ones that theyshould be doing something.

In my personal experience, these moments where one gets total, undivided attention without
having to say a word, or any perceived actions necessary; these moments are truly the most
profound moments in ones existence. To allow this person to be all that he or she is, and for
him/her to find true acceptance from somebody who does not have an agenda, who does not
judge, no expectations and who does not want anything in return.
To find that connection on the level of essence and heart is a sacred, sacred place to be...

Think about that: how often in your life have you truly been at the receiving end of total
acceptance? What a gift to be able to offer this!!! It has freed many people.

88

Sing for the patient

Some patients love it when you softly sing for them there
are such sweet songs out there
Personally I love sharing lullabies. If you are a bit shy about
singing try to think of it this way: how bad is it really for
you to feel a bit embarrassed for a couple of minutes if it
means that you are bringing joy to a dying patient and loved
ones. In a homecare setting or at a facility; check with a
possible roommate what he or she thinks about that you
are after all, a guest to that persons home as well! Overall
the patient, roommates and/or loved ones truly like it when
you do so. If you happen to speak or sing more than one
language, it is often very much appreciated when you sing
in the patients native language. (A lot of people revert back
to their native tongue when they get closer to death.

Example:

I was providing transition care for a male who was
originally from Mexico. This man spoke English and
Spanish but he had been reverting back to his native
language more and more for a while now. He had a lot of
loved ones but only one of them was familiar with his native
tongue. They asked me to sing for the patient and I gladly
did so in both English and Spanish. The patient who was mostly unresponsive seemed to react
mostly when hearing the Spanish versions this served as a consolation to the family and a great
honor for me.

If a patient is connected to medical equipment it may be helpful to pay close attention to that if
you are singing. For instance; watch if the numbers change if they go down, it may be because
the patient relaxes. Singing for the patient may also be a great way to cut tension in the room.


Read to the patient


Some patients like to be read to and sometimes loved ones may ask you to do so.
It is important that you ask what exactly one would like for you to read for the following reasons:
you would want to read something to the patient that he or she may enjoy and obviously
something that would not be offensive to the patient.
On that same token: you should only read something to a patient that is within your own
boundaries i.e. dont read anything that would pose offense to you.

Most patients will have something appropriate to read in their room but I usually carry some
poetry with me just in case.
89

Brush the patient's hair

If the patient would appreciate that you do so, it may be
soothing to brush his or her hair.
It also maintains ones dignity and showing that you care about
that is overall greatly appreciated by patients as well as loved
ones. Be very gentle and only use a patients own brush; never
one you brought yourself.


Put lotion on the patients hands


You can gently apply some lotion to the patients hands and/or arms. A patients skin may get
pretty dry sometimes especially on the elderly. Some patients also like the physical contact it
seems to them sometimes that nobody wants to touch them anymore. J ust because they are sick
and/or elderly.

Only use lotion supplied by the patient, loved ones, or hospice never lotion that you personally
brought! (You do not know if the patient has any allergies.)


Candles


I have been asked to include a segment on candles. Some people like to
use them to set a certain atmosphere. Personally, I would never use candles
for the simple reason that the liability is too high for everyone involved.
A wonderful alternative are the simulated candles that are for sale at many
stores these days. They can create the same kind of ambiance without all
the risks (think of children, pets, roommates etc.).

If you are considering utilizing candles for their scent; make sure that it
would not be bothersome to the patient or loved ones people with COPD
for instance may find them too strong or irritating to their airway. When
using a scent, lavender would be your best option as it has some calming
properties. The simulated candles may be found in scented form as well.

When using candles; be extremely careful in observing safety rules and regulations and never
utilize candles without expressed permission of hospice, loved ones AND the facility!

90

Talk with the patient/to the patient (6)

Some patients love to talk about their family, hobbies or basically, anything under the sun.
At the end of life you may encounter patients who want to talk about their life the good and
the bad. This is called life review.

Sometimes life review can be crucial to the patients ability to find peace. This may mean that
the patient shares information with you that nobody else (including people who may be
extremely close to the patient) is aware off but that may be bothering the patient greatly.

It is important that you only discuss issues that are within your personal boundaries and to realize
when it is important that you involve another member of the patients care team.

Do not be afraid to ask the patient questions like: Are you sad? or Does that make you
happy? You may be surprised how much a patient may like a genuine down to earth
conversation because a lot of people tend to tip-toe around a terminal patient and the
conversations are often kept pretty superficial.

Talk to unresponsive patients. You may never find out if the patient ever heard you but it is
believed that the hearing is the last of the senses to be lost. So make sure you introduce yourself
and talk about whatever comes to mind unless you suspect that being talked to is disturbing the
patients dying process and keeps the patient from a peaceful transition.


Moisten the patients lips with a swab


Because some patients do not drink any fluids or wet
their lips, they may become cracked and dry.
If permitted by hospice, the patient and loved ones, you
may moisten the patients lips to make them feel better.

Use only a swab provided by the facility or hospice!

A volunteer is overall not allowed to provide care
within the mouth, so only moisten her lips or apply a bit
or Vaseline or lip balm to them.
91

If the patient fidgets place something in his or her hands


You may encounter patients who seem to be fidgeting with their hands a lot and it may not
always be clear why they are doing so. There are patients who for some reason need something
of texture in their hands; sometimes I will place a little stuffed animal in their hands so they have
something to hold. Loved ones may feel offended because they may be misinterpreting why you
are giving an adult a stuffed to hold, so it is important that you explain that you do so because for
some people, fidgeting may provide a sense of safety/control.
The reason why I use stuffed toys such as a teddy bear is because they have a lot of texture but
basically anything from a dishtowel to a book will do.



















Use of an extra pillow


If a patient bends his knees it is always advisable to place a small pillow between the legs to
prevent pressure points. If a pillow is not in place, tactfully bring this to the attention of the
patients loved ones or staff members.
92

Talking to an unresponsive patient: (7)

The fact that a patient is unresponsive is in my opinion irrelevant.
It is important to treat unresponsive patients exactly like responsive people.

Volunteers are not qualified to assess what the patients
capabilities are or are not.
But as a volunteer you are aware of the fact that no matter of a
patients declining status, research has shown that the hearing is
the last of the senses to be lost. Therefore it is very important to
communicate verbally to a patient even if he or she is
unresponsive.

Share this information with the patients loved ones, they overall truly appreciate that you treat
their loved one with respect and a lot of times, they are confused and/or embarrassed about what
is the right thing to do. By example you can possibly help them with that and make them more
comfortable about talking to an unresponsive loved one.

Example:

I was visiting with a patient who was unresponsive and his loved ones didnt quite know how to
act around him and who can blame them; it may be difficult to talk to someone who doesnt
respond especially if the patient has been in a long term nonresponsive state one-sided
conversations are hard! But when mentioning certain things, the patient seemed to start
trembling. So, I tried to keep the subject (fishing) going for a bit in hopes that maybe that was
one of the patients interests. When talking to him, hed tremble.
Now some people may argue that those moments were coincidences or the patients reflexes but
who is to say? All I know is that the patient appeared to react to that specific subject and that that
gave his loved ones a specific subject to talk to him about and the feeling that he was in fact
hearing them.

Make sure that just as you would with a responsive patient, you always identify yourself to the
patient before you talk to him/her and before you start performing care such as brushing of the
patients hair or applying lotion.
Then make sure to keep talking while doing so (Youve got such beautiful hair etc.).

Communication with a nonverbal patient

Sometimes it can be helpful to use a board with letters and/or pictures that a patient can point at
or if he or she cannot do so; the volunteer can point and the patient can confirm whether that is
what they want. Like a picture of a cup of coffee.

Of course simple signals like nodding ones head etc. work well too, especially when a patient has
reached the stage where he or she is actively dying.
Keep the questions short and simple and mostly use yes or no questions.

93

Loved ones (8)

Loved ones come in many shapes and forms and with just as many emotions.

They are people just like you and I.
They are going through a very stressful time and their behavior may be influenced by many
factors.

Navigate delicately and observe.

Be sure to navigate delicately for instance; never choose sides in
a family dispute! Observe closely and communicate possible areas
of friction to hospice as soon as possible and call on other staff
members when needed.

Try to be patient, open minded and tactful.

Try to remember that everyone involved in this journey will be
going through this in their own way as well as their own pace.


Remind loved ones that hospice support is there for
them as well as the patient.
Make loved ones aware of the fact that you are there for them as well as the patient, and that that
does not mean that they are incurring extra costs. (Some people are so overwhelmed with
everything that is going on, that they sometimes dont realize that bringing in a volunteer is not
costing them any money)


When needed, contact hospice for support.


When you feel that you need support, do not hesitate to call hospice. You are an equal and
important part of the patients care team and hospice will absolutely step up to the plate should
you need support whether it is for the patient, loved ones as well as you yourself as a person.

94

More helpful options (9)

Provide a calm and comforting atmosphere

Part of providing a calm and comforting atmosphere is maintaining a humble yet confident
composure.

Set up a shrine for patients and family.

Something which may help the patient and loved ones is to set up a shrine close to the patients
bed. Ask everybody involved to bring something that has a treasured memory attached to it for
them concerning the patient and display it on a table close enough for the patient to be able to see
it. This serves as a nice tribute to the patient but it also is a great way to start a conversation as it
gives loved ones a chance to share cherished moments.














Offer loved ones alone time with the patient.

I always offer loved ones some alone time with the patient sometimes there are some things
that need to be shared that do not necessarily need to be heard by others, like myself. This
happens often and I will not be offended if you would like to take that opportunity at any given
time; just let me know.

Educate loved ones about the dying process and guide them through.

It is an incredible gift for the loved ones that you are there to answer questions about the dying
process should they have any. It gives them the opportunity to be better prepared for what is to
come and possibly provides them with some peace of mind because they have someone
knowledgeable by their side.
Always explain patiently and tactfully even if you have to explain certain things more than once.
Make sure to explain the Cheyne-Stokes breathing pattern early on in the process.

95

Explain, acknowledge, and reassure.

Reassure loved ones that it is okay to lament and/or
show their sadness about losing patient soon and allow
them to cry, talk or whatever else their needs may be.

Remind caregivers to take care of themselves by maybe
taking a nap or take the dog for a walk etc. and that by
doing so they are not being selfish (something loved
ones often struggle with) but that they are merely
replenishing themselves for what is yet to come.

A gentle reaffirmation of all that they have already been doing for the patient, how well they are
doing and the fact that you are there to watch over the patient and will come get them if
something were to happen may help loved ones to take an often much needed break.

We already discussed briefly that some patients may need to get permission to die but giving a
patient permission to die is sometimes just as important to loved ones.


Example:


As always during transition care, I had explained to a patients loved ones that giving a patient
permission to die may be very important at times. One of his sons asked to speak with me in
private and he told me about all the trials and tribulations that he had encountered in his life and
how his father had stood by him no matter what. He wanted to return that love and support but he
loved his father so very much that he couldnt bring himself to grant his father permission and he
felt both selfish and guilty about that. Among other things, I informed him that that isnt all that
uncommon and it helped him to know that he wasnt the only one struggling with these feelings.
We agreed to give him time and space and just take it one moment at a time.
At a certain point we played some music for the patient and I noticed that every time a certain
phrase in the song would come around (youre in the arms of the Angel, may you find some
comfort here) the son would suddenly look up at me. I winked at him and said: this would be a
good time. He took a deep breath and started to tell the patient how much he loved him, that he
wanted him to be at peace and then through his tears, he gave his father permission to die.
After that he walked over to me gave me a hug and said: Its okay now
Later he explained that that had made his fathers death a lot easier on him because it gave him a
sense that giving his father permission felt like that was one last thing that he could do for his
father and that in turn gave him a sense of closure.






96

You may be asked for advice on when it is a good time to call in loved ones.
Sometimes there are loved ones who need to see the patient before he dies.
This can be especially important if a loved one has to travel far.
You can suggest they can call in their loved one(s) permitting time, so that the loved ones at least
have a choice whether they want to come over or not.

You can also suggest that loved ones who live far away call while you hold the phone to the
patients ear. This way the patient gets to hear their loved ones voice and the loved one(s) can
say what they need to say to the patient just in case they cannot arrive before the patient dies.
The reason why I am suggesting that you are the one holding the phone is that sometimes people
may wish to say things to the patient that they dont want others to hear and this way the other
people would be further away from the phone making it less likely for them to catch anything
that is being said.

If you are sharing a transition care request with other volunteers, it may be very comforting for
the loved ones to know upfront until what time you will be with the patient, who will be there
next and sometimes, who will follow after that. The patient and his loved ones are going through
an enormously intense process at this time and overall really appreciate it if you would write the
above information down for them. Place the piece of paper where it can be easily seen by them,
it often gives the loved ones more peace of mind.

Explain to loved ones that it is okay if they feel they have to leave; sometimes people have to go
to work or get some rest, clean clothes etc

Some patients wish to be alone when they die no matter how strong the bond with loved ones is.

Example:

A woman who had been taking care of her mother, who resided in a nursing home for years on
end insisted on staying with the patient constantly during the last days of her life.
Even though I was asked to relieve her so she could go home to rest, she still insisted on
remaining at her mothers side.

She simply could not bear the thought of not being there for her mothers last moments. The
patient had been in a state of actively dying for days. Somehow, I got a strong impression that
this patient wanted to spare her daughter from watching her die. At a certain point, I told the
daughter that I was going to get a nurse for something. The daughter replied: Oh, Ill get her.
She walked to the door stuck her head out to look for the nurse and thats when the patient took
her last breath. It seemed that she waited for her daughter to be distracted







97

Affirm that people deal with different issues in different ways (10)

Point out that emotions, pain, grief and mourning are not to be compared and that everybody
deals with it in their own way. I will say for instance: I am not going to tell you that I know how
you feel because I do not. Or I know about grief but I do not know your grief.


Do not be afraid to share your own vulnerability.


Being strong can be defined in many ways sometimes being strong may
mean being able to be vulnerable. It makes you human and as long as you
keep it within certain boundaries, sharing some of your own vulnerability
can sometimes pave the way for patients and loved ones to open up to you.

Patients and loved ones often open up to a volunteer in a different way than
they would with staff members who are on the payroll.
This may be because they feel that you are there with a different kind of
motivation. Sometimes patient and/or loved ones may confide in you when
they need to talk about subjects that they, for whatever reason, dont feel
comfortable discussing with another member of the patients care team.
It is up to you to disconcert when the subject at hand is something that you can keep between
you and the loved ones or when you need to report the subject of the conversation to hospice.


Example:


I was providing transition care for a woman who was diagnosed with diabetes. She seemed to
have this under control pretty well. She spend a lot of time in the nursing home with her dying
mother but was eating well and faithfully testing her blood sugar levels. Every time other loved
ones called to see how this womans mother was doing, they lectured her about her diabetes and
as she started crying she told me it was driving her crazy. It was really putting a lot of pressure
on her and causing her to experience a lot more stress. She told me that she didnt want to tell the
hospice nurse (or anybody else for that matter) because she was afraid that even more people
would start to lecture her and that she would lose her temper.
Since I observed firsthand how diligently she was taking care of herself, I promised her that Id
make a pact with her never to harass her about her diabetes. After her mother passed away this
woman requested that I would attend the patients memorial and luncheon thereafter.
I honored this request and when we talked at the luncheon, I looked at her plate and said: I feel
so grateful for the privilege to attend your mothers transition and Im still honoring our pact!
The woman laughed, leaving other loved ones a bit puzzled about what the pact was and
explained to me that the fact that I stuck to our agreement gave her a feeling that she had a little
bit of power over a very stressful situation.


98

Offer concrete help

Loved ones are often so concerned with the patients well being that they put their own needs on
hold. It is important that they take care of themselves as well and sometimes they need a little
help with that. A lot of people are very accommodating by nature and feel that they shouldnt
bother anybody with their needs. You may encounter that especially in the elderly because often
they were raised to be very independent.

Therefore, it is important to offer concrete help. If you ask if there is something that you can do
for them in general, there is a good chance that they will say no. I have experienced that Ive
asked loved ones if they were hungry (knowing for sure they did not eat in a while) and if I could
make them something. The answer was no. Yet when I put a sandwich in front of them they
would say thank you and eat it right away

Sometimes it is hard for loved ones to see the patient decline. They often feel like they are not
doing enough for the patient and for their own loved ones etc. and that may make them feel
powerless and with a lack of control. So sometimes I will ask loved ones to perform a certain
task or if they offer to do certain things, I take them up on that offer.


Example:


A man shared that he was so very grateful for all that his wife and others were doing to help him
and his dying mother but that at the same token he felt so powerless that he couldnt do more to
be of help himself. He kept bringing that up and it was hard to see him in such anguish. He
happened to be an excellent cook and at some point he offered: well, at least let me feed you.
His wife and I decided to take him up on the offer. And so in the kitchen he went and he came
out with a wonderful spread of delicious food and more important a huge grin on his face!
This is an example of something that may seem minor to us but it meant the world to this man.

His mother used to love to entertain so not only did he feel of help and was he able to do
something in return for the help he was given; he was also able to show appreciation in his
mothers name when we thanked him for the wonderful meal he proudly declared: well thats
what mom would do!









99

Allow for silence

There are people for whom silence evokes feelings of awkwardness but it can absolutely serve a
purpose. It may give people some time to contemplate or close their eyes for a bit. Sitting in
silence with patients and/or loved ones can be just as powerful as any other support offered.


Leave a note for loved ones if you happen to leave before they arrive.


Leave a note for loved ones if you leave before they arrive. It doesnt have to be long but it
provides a personal touch and it may mean a lot to those who are close to the patient.


Example:


I had provided transition care during the night for a lady so her son could go home to rest.
I didnt get a chance to meet him that day so in the morning right before I left I decided to leave
him a note. It was a very simple note thanking him for the privilege of companioning with his
mother during her last journey on earth, that she was in great hands at the facility and that she
had a peaceful night and that I would be back soon.
When I arrived back at the facility, the nurses told me that the patients son had come to them,
crying while telling them how much it meant to him that someone he didnt even know left him a
note about his mother. He couldnt stop talking about it.
The nurses continued by telling me that that must have meant an awful lot to him since this
gentleman usually was extremely timid and withdrawn and wouldnt talk to anyone because of
having a severe speech disorder.










100

Are young children present? (11)

When children are involved the atmosphere at the residence may be completely different.
A lot of times a patient likes to have children around because children are very matter of fact and
practical and also because they can lighten the atmosphere because they can be whimsical and
because of their laughter.

Children are naturally curious so you may get questions from them. It is important to answer in a
short as a matter of fact way just the answer to the question(s) he or she has at that moment.
A child usually is satisfied with an honest answer, will think it over and get back to you if he or
she has more questions or sometimes; the same one If that is the case just answer as if it was
the first time he/she asked try not to lose your patience.

Using euphemisms is a bad idea; if you tell a child that mommy went to sleep and that she will
never wake up again imagine what a child may think about what happens when he or she
would go to sleep? How scary for this child!

If you tell a child daddy went on a trip and will not come back ever, that child may feel that he or
she must have been bad for daddy to leave him/her behind

























Children often feel like they have caused a loved one to die.

101

Children may display anticipatory anxiety. For instance: if a childs parent or sibling is
terminally ill, the child may be afraid that when this person dies a parent or grandparent will die
as well because of the shock of this significant loss.

Children sometimes are angry at the patient for being sick, getting all the attention, leaving them
and a whole lot of other reasons. This in turn can make them feel guilty for having these feelings.
It is important to let them know that these are very normal feelings to have and that everyone has
those at times.

Depending on the age of the child, it is sometimes hard for children to express these feelings and
communicate their fears. Therefore children may act out in a rude or mean manner, tantrums,
crying, yelling etc. Sometimes they act out in withdrawal.

Children overall greatly appreciate it if you spend a little one-on-one time with them; even for
just a couple of minutes just talking. You can also read with them, sing a song, color or draw,
play with them, or just sit with them.

It may help little children a bit to feel helpful so it is nice for them if you ask them to wet a wash
cloth a bit and have them cool mommys hand with that or some other small thing.

It may comfort little children a bit if for instance you spray some of daddys cologne on their
favorite stuffed toy. That way when they go to bed, it may help them fall asleep better because
their toy smells familiar and like daddy.

Death is a normal part of life and if we treat it as such, children will follow our energy.
Being honest with a child may very well mitigate any prospective damage.

If I am aware upfront that a small child may be present, I try to bring a small stuffed toy to act as
a companion for the child during this difficult time or I will ask the child to babysit my toy
again, to provide him/her comfort, to make him/her feel useful and to make him/her feel that
he/she is part of the process. When the patient has died or the child or I leave, I overall tell the
child that he/she has done such a wonderful job that the toy (which is more than likely to be
named by then) wishes to stay there and I ask them to please keep on taking care of it.
As children love gifts they usually really appreciated that and they now also have a new special
buddy who was by their side when going through this loss and they may cherish that for a long
time.
102

Are there any pets at the residence? (12)

Animals obviously have to be under control.
But besides that it would be beneficial for you to know if there are cats for instance just in case
you would be aware of the fact that you are allergic to them.
If you are aware of any allergies it is advisable that you register this at the hospice so that your
volunteer coordinator knows when to request your service and when to contact another volunteer
who may be better suitable for the assignment.

Pets that are close to the patient should be allowed to be near the patient when possible.
In my experience pets are very aware of what is going on which could possibly lead to endearing
moments.

Example:

A patient who was living with her son and daughter-in-law had gotten very attached to their two
Doberman dogs. When she got closer to dying, both dogs showed up on the side of her bed and
they each put their nose under her hands one on the left side, one on the right side.
Not long before this patient died the dogs both became very restless and seemed to be barking at
the sky. These moments were both endearing and comforting to the patients son as he shared
with me that to him this meant that the dogs were saying goodbye to mom and welcome to
the Angels who were there to guide her on her way.
It was a truly heartwarming experience

Another example:

As a patient who kept his two beloved dogs outside at all times was getting closer and closer to
death, his dogs were getting more and more restless. After a conference with the patients family
members we decided to allow the dogs to say goodbye to him.
We opened the gate and the front door to let them in the living room where the patient was
located. His dogs however never made it passed the front porch. They knew very well that they
werent allowed into the residence and did not want to enter the house.
These dogs stayed restless but settled down fairly quick after the patient died.
They knew

It is wise to exercise caution around pets:

Pets often pick up on emotions of the people
around them and act accordingly so one
should watch their behavior if the situation is
very tense if they get stressed out too much
they may act out.
103

CHAPTER FIVE (1)

Contents:

The restless patient (slide 2) pg. 104

Alzheimers disease (slide 3) pg. 105

How can you support an Alzheimers patient? (slide 4 & 5) pg. 106

How can you support loved ones? (slide 5) pg. 107

Veterans (slides 6, 7 & 8) pg. 108-110

Post traumatic stress disorder (slides 9, 10, 11 & 12) pg. 111-113

Working with people from different cultures (slide 13) pg. 114

Be creative think fast! (slide 14) pg. 115

104

The restless patient (2)

o Unfinished business, fear of the unknown
o Last hoorah, terminal agitation, near death awareness
o Confusion, hallucinations
o Alzheimers disease
o Veterans
o PTSD



This slide mentions different reasons which may cause a
patient to be restless. We will discuss Alzheimers
disease, veterans, and PTSD in a more detailed way
later on.

When a patient seems restless, I always gently let them
know where they are, that they are safe, who are with
them and I let them know that they are okay/doing great.


105

Alzheimers disease: (3)

Alzheimers disease is a progressive brain disorder which besides memory issues may present
with mood swings and personality and behavioral changes.

Patients with Alzheimers and/or other forms of dementia often perceive to be living in the
past. Their short term memory is afflicted, yet their long term memory seems to be great!
Sadly, because they do not know what is going on in todays world they sometimes do not
recognize their own wife, children and/or other people or pets.

If a patient does not recognize their loved ones it often hurts
their feelings.
At times it may be helpful to ask the patient (if still verbal)
how old he or she is. If a man for instance says: Im 17
then you can possibly explain to loved ones that since the
patient did not have children until he was say 20, he does
not recognize them simply because in his world they are not
born yet!

The same goes for a patients siblings: he may be looking
right at them but not recognize them because hes looking at
adults and in his world; his sister is only 8 not 60!

People who suffer from Alzheimers disease who are confused and do not recognize their loved
ones do not comprehend that they are hurting anyones feelings.
They truly live in a different time, place, and reality

Many people with Alzheimers disease lose their ability to swallow: this is one of the reasons
why they may get medications delivered under their tongue or in a pocket inside their cheeks.
It is an excellent place for them to be dissolved and absorbed and it prevents choking.

A person with Alzheimers disease sometimes cannot speak and/or smile anymore but a lot of
patients afflicted by this disease somehow do remember how to sing.
You will be amazed to see that if you ask if a patient wants some coffee; shell just look at you.
Yet when you add a melody line to the question he or she may just reply in singing form!

Awesome to see and even more awesome to share with loved ones!

Sometimes repetitive behavior may provide a patient with a sense of safety and control.







106

How can you support an Alzheimers patient? (4-5)

Use kind facial expressions, short yes/no questions, a lot of eye contact, physical touch may
bring him or her back into the now. Start every conversation by saying the patients name,
calm demeanor, if the patient gets agitated redirect, avoid questions about recent past ask
questions about long term past, try to accommodate the patient do not try to control him or her.

Always look for non-verbal cues! Body language and facial expression say a lot!

In patients who suffer from Alzheimers disease you may enconter that their day and night
rhythm is upside down then it is best to try to mimic daylight.

There are people who believe that Alzheimers patients can only live a
tragic life but that is a misconception. Oftentimes going along on a persons
journey may create some very interesting and fun moments. Be creative!
Try to imagine yourself in the patients shoes and work with that.


Example:


If a patient who suffers from Alzheimers is experiencing terminal agitation and keeps wanting
to go out the door, you may suggest to loved ones to hang a curtain over the doorway. When you
keep the curtain closed it may help settle down the patient because he or she is more than likely
not to go for the door anymore for the simple fact that they dont recognize the door as such
anymore and even may forget on the spot that they were trying to leave in the first place.
The same goes for placing a big, dark mat in front of the door; the patients may still recognize
the door but will overall not go for it because they do recognize it but they often dont recognize
the mat for what it is. It seems like the mat is perceived as an in-crossable boundary as if the
patients see it as being a big gaping hole that they could fall in so they wont step on it.

If any patient Alzheimers disease or not is restless enough that they are trying to get out of
bed: you may suggest that they stay there but you may never restrain them! Call loved ones
and/or staff members right away.

In remembering that Alzheimers patients often perceive to be living in the past, try to
understand that therefore patients who have not been born in the United States may revert back
to their native language. It is often frustrating for loved ones and staff members and it may be
very frightening for the patient if communication is diminished by a language barrier.
It may be very comforting if you happen to speak the patients language if only a few words.
I tried that myself and it really seemed to calm patients down. Or if I wasnt fluent enough in a
patients language and I happened to know a song in that language then that in itself even helped
sometimes just that brief moment of recognition seemed of great comfort to the patient.
107

How can you support the loved ones of an Alzheimers patient? (5)

Allow loved ones to lament

They often deal with a role swap;
they have now become the caregiver.
It may be very hard on them
to see their spouse or parent
or loved one decline.
Explain, acknowledge and reassure
If you have a calming effect on the patient it may be of great comfort for the loved ones.

Example:

I provided support with a family whose dying mother suffered from Alzheimers disease.
Sadly, her memory was affected greatly and she did not recognize most of them. She would get
confused and scared and acted out in yelling at people. When I visited, I seemed to resemble
somebody from her past and she started talking to me in a very nice voice, asking me how I was
and telling me how much I had grown and so on. When you think on your feet, you can actually
have quite a nice conversation with people without having to go in-depth or using many details,
and so I chit-chatted with this lady while her family looked on in loving kindness as they say a
glimpse of the mother and grandmother whom they knew and loved so deeply.
108

Veterans: (6)

In order to provide optimum care, it is important to be aware of the fact that some patients are
veterans. It is not only important that they were in the service, but very important as well; in
which branch did they serve, when, and where etc.

Did they enlist or where they drafted?
At what age?
Rank?
How long did they serve?
Where they in active duty?
Were they ever a POW?
Where they combat veterans?
Did they get wounded during combat?
Where they decorated with, for instance, a purple heart?
Did they get an honorable discharge?
Did they leave family members overseas when coming home from the war? (Like
children who were conceived while the patient was stationed in J apan or Germany).
Did they get an honorable reception when coming home from the war?
(If not, we can apologize for that).
Are there/where there additional family members who where/are veterans or actively
serving? A spouse perhaps? What happened to them?

Also, if they were in WWII there is a distinct difference where the veteran served during this
war; J apan (Pacific) or Germany.

Veterans often prefer a volunteer or other staff member who is a veteran as well because of
possible common experiences and a common understanding of military culture.

Veterans have been known to underreport their levels of pain/fears/anxiety because of stoicism.

Female and male veterans may have experienced sexual assaults and/or torture while being in the
military. The latter would have mostly occurred with veterans who were POWs.

A lot of veterans wish to share their experiences. If a patient would like to speak about what
happened to him or her while being enlisted you may gently encourage the veteran to share
more. Be advised however that a lot of patients who are veterans do NOT wish to talk about their
experiences at all. If that is the case respectfully talk about other things and do not push.

Sedation may cause a sense of loss of control in veterans.
There are a high number of veterans who suffer from PTSD post traumatic stress disorder.
Especially those veterans who have been in combat situations. Sometimes this gets confused
with terminal agitation and /or a state of confusion. The distinction between PTSD and terminal
agitation is important because the interventions implemented are different.



109

(7)

Be aware of the fact that a veteran may have suffered from PTSD his/her whole life but never
really shown signs of it it sometimes goes hand in hand with the military culture you have to
be tough; showing that you are suffering could potentially mean that you are weak.

Veterans may suffer from moral injuries caused because they may have killed people and/or
inflicted serious injuries and/or trauma onto others during a conflict or war. Never dismiss their
feelings of guilt by using platitudes such as; oh, but you were just following orders or that is
okay, it is a long time ago. Rather, use phrases like Im sorry you were put in such a position
or Im so sorry you had to experience that.

Sometimes veterans may have had to leave loved ones and/or children behind at the location
where they were stationed before. Near the end of life, they may regret having left them and
sometimes there may be a desire to talk about this or to be reunited. Loved ones in the patients
current life may or may not be aware of these unknown family members.


It is advisable to stay away from assumptions:


Not every veteran suffers from PTSD.

Combat veterans may not have served in danger zones and vice versa; non-combat veterans may
have served in areas that were not safe.

Not all female veterans have experienced sexually assaults while in the military and one should
also not assume that male veterans were not sexually assaulted.

Dont assume that the patients loved ones are aware of what the patient went through.

110

Veterans continued (8)

Thank all veterans for serving their country and thank females for paving the
way.


Thank all veterans for serving their country and for the sacrifices they made and thank female
veterans for paving the way.

If the veteran did not experience a friendly reception when coming home from the war, you can
apologize for this and if so inclined, thank him or her on a personal level.
















Acknowledge veterans and loved ones.


Because of stoicism within the military culture or having been on secret missions, the family of a
veteran may not be aware of a lot of experiences a veteran has been through.

In some cases we can acknowledge to the loved ones of veterans the hardship the military
experience of the patient has had on their life. (Some people come back from the war a totally
changed person, some people had to move a lot because their loved one being in the military).

111

Post Traumatic Stress Disorder (PTSD): (9-10)

Post traumatic stress disorder (formerly called Battle Fatigue) is by most standards mainly
related to people who were in the war in Vietnam. Many, many veterans suffer from this
disorder. Any given person however may suffer from PTSD and it can surface at any given time
even with people who never showed signs of the disorder before. How, when, and who it will
affect is unpredictable.

PTSD develops under extreme situations such as the witnessing of wartime atrocities, being held
captive, but also severe trauma occurred outside a war scenario such as airplane crashes, rape,
beatings and/or other traumatic experiences in ones life.

Patients may have blocked out traumatizing experiences, but PTSD may surface at the end of
life. For instance, when they had to kill someone during a war or conflict and now facing ones
own mortality.

PTSD can cause severe anxiety in people who suffer from the disorder brought on by a trigger.
A trigger is a situation which evokes very strong memories in people with PTSD. Triggers come
in many forms: a sound, a smell, something seen, felt, heard or done. They can be physical,
environmental and psychological as can be a reaction to a trigger.


Some examples:


Auditory:

A combat veteran may get scared by hearing a helicopter fly
over. It may be that this reminds him of wartime when
choppers meant an imminent threat to his life. The way PTSD
works is this: in that instant the veteran can get flashbacks of
an exact moment in the past and the flashback is often so
strong that he literally relives the exact situation. In his
perception at that very moment he is crouching down in that
rice field; trying his hardest not to be detected, praying he will
not get killed. This means that he may not realize that he is
safe in his room at the nursing center in his reality he is in
Vietnam. Helicopters in Vietnam often were accompanied by
troops on the ground (and sometimes underground as well)
the Vietcong. If the patient in a trigger feels that there may be Vietcong around and gets anxious
about that, sometimes it may settle him if you could put his mattress on the floor that way,
there cannot be any Vietcong members under his bed (which in his perception may be a tunnel).

Also: a siren like the monthly test cities run, may remind some elderly people of the sirens they
would hear during an airstrike during WWII.

112

Noxious stimuli A full bladder can trigger memories from being a POW

Veterans who have served on submarines while serving in the navy in combat situations may
panic when their oxygen saturation drops.

Activities can cause someone to be triggered: like - providing wound care at an accident or
coming to a hospital.

Changes in ones social circle can be the cause of triggers: like - a roommates death or the death
of a close friend or army buddy.











Avoid sedation this could create a sense of loss of control which often makes the patient
struggle more to gain back some control.

Gentle reassurance may help; no restraints if possible especially for POWS.


Example:


A patient that has been tied up as a prisoner in a war camp got very restless when being in bed.
It turned out that the tight linens from his bed reminded him strongly of these terrifying
experiences.


Example II:


A patient who was known to have served in the military kept begging me to move his bed away
from the wall. After some careful questioning I figured out that he had been a POW and that
being so close to the wall reminded him of being in close confinement. It also prevented him
from having the feeling that he had enough directions to escape in case of possible pending
danger. Obviously, as a volunteer I was not in a position to start moving the patients bed around.
I went to the nurse, explained my suspicions and she moved the patients bed a little. The patient
settled down and the nurse was happy to have been able to help the patient with his anxiety.


113

PTSD continued (11-12)

Do not touch a patient with PTSD unexpectedly. Instead call him or her
by name and do not walk up on him/her unexpectedly. Also, try not to
make any sudden loud noises. This may trigger them and send them in
an enormously high level of anxiety/hyper vigilance.

Patients with PTSD may react paradoxical to certain medications
including some which are used in end-of-life care so it is important to
know if a patient suffers from PTSD.

Nightmares are very common in patients who suffer from PTSD as is hyper vigilance: a
prolonged heightened state of awareness where people are enormously tuned in to their
surroundings through intense watching, listening and sensing often accompanied by sleep
deprivation because the patient senses that he or she has to stay alert to be able to survive.

PTSD goes undiagnosed a lot of times. PTSD can be acute, chronic, or delayed so it may surface
at any given time or place and under any given circumstance.

Try to assess a patients triggers ahead of time and try to eliminate them before they have a
chance to trigger the patient and/or medications are needed. Try to make the patients
environment safe; mentally, physically and emotionally.

Because a patient who suffers from PTSD literally relives the traumatic experience and all the
emotions that were initially involved, he or she is essentially being re-traumatized when getting
triggered.

Oftentimes veterans who were in combat or POWs suffer from PTSD.

Patients who suffer from PTSD oftentimes avoid situations and /or people that may trigger them.
Some examples: news coverage, or pushing away intrusive thoughts. Veterans who have served
in the Pacific may get triggered by encountering people of Asian heritage (this may have nothing
to do with racism).

If a patient with PTSD gets triggered gently guide, dont diminish; this is real for the patient!
114

Working with people from different cultures (13)

When working with people from different cultures, it would be ideal if everybody involved
would automatically be on the same page. But because of our differences misunderstandings
sometimes may arise. In some cultures for instance eye contact between certain people is
considered highly disrespectful whereas in other cultures that would go for the opposite.
While asking about a patients loved ones may be expected in some cultures, it may seem
intrusive to others. Certain cultures are more dramatically inclined as opposed to other cultures
where one would display a more stoic attitude and touch may be a touchy subject too!

There are numerous different cultures and within those cultures there are so many different ways
and rules of living that it would be way too much too mention it all here. Besides ones cultural
background there are many different possibilities to color ones own beliefs and preferences.
I wrote down some general points that I try to apply to my everyday life.


Dont generalize or make assumptions

Being labeled with the wrong country/origin may be highly offensive to people.

Not everybody from the same culture necessarily practices the same lifestyle or has the same
beliefs.


Dont be afraid to ask questions


People overall appreciate it if you ask them questions regarding their culture/customs.
It may spare everyone from painful or embarrassing moments.


Embrace our differences


We can all learn so much from one another and enrich our lives by embracing or differences and
grow together in mutual respect.


Respect is the key!


Understanding that people are people regardless of cultural background will bring us all together.
As long as we are all respectful to one another we can all serve as a tremendous form of support
whenever needed.
115

Be creative Think fast! (14)

Sometimes you have to think on your feet to keep a patient comfortable.
Below Ive given some examples of how I handled certain situations in order try to help patients.



A patient was fidgeting a lot and it seemed like she was looking for
something. She seemed like she was searching for something.
She kept looking up and said: oh boy, oh boy, where are they?
It seemed to really bother her and when she looked at me I asked her
what was wrong. She replied: I cant go, I cant go now! When I
asked her why she couldnt go, she said: I forgot my dang keys!
She seemed sad as she whispered: Now I cant go!

As dying patients often use metaphors when referring to death, I
thought of the possibility that she might be looking for keys to open
the Heavenly gates.

I calmly reached over, put my own keys in her hands and said:
Thats okay you can use my keys and when its time for me to
come home, you can let me in. She seemed tremendously relieved,
said: Thank you and died with a smile on her face.


A patient who was mostly unresponsive came close to death multiple times but
every time we thought she was going to pass away, she bounced back.
Her loved ones started joking about the fact that she probably loved all the
attention she was getting. As they told me stories about how she loved to live
life to the fullest, we decided that her death should be a celebration, just as
much as her life was. And so, on her deathbed; we gave her a tiara to wear
just as abundant and vibrant as she was! After a while we started to wonder if it was
inappropriate to have her wear a tiara while she was dying, whether it was ethical
But when we tried to remove it she would get fussy every single time! So we left it on.
This patient died in her precious tiara and it was also a big part of her memorial service.
Her loved ones still have the tiara to this day


A patient asked me: Am I going to heaven? I looked at him and asked: is that where you want
to go? He paused a while and said: yeah...but I dont know how to get there!
I tried to reassure him by saying that we could probably figure out a way. He looked at me and
visibly worried asked me: can you get me up there? I try to go along on a patients journey
while also trying to stay as truthful as possible so I replied: well, I may not be able to get you up
to Heaven all the way but Ill see what I can do. This patient happened to be lying in a hospital
bed so I grabbed the remote control and started to raise the bed.
This must have given the patient a feeling like he was in an elevator or floating up to Heaven
because he quietly said: goshthats neat After that he died peacefully

116

CHAPTER SIX (1)

Contents:

Things to avoid (slides 2 & 3) pg. 117-121

Other things to keep in mind (slide 4) pg. 122-125

Do not call 911! (Slide 5) pg. 126

When you call 911 (slide 6) pg. 127


117

Things to AVOID (2)

Never give an estimate of how long the patient may be still be alive


Dying is truly a very personal journey and a lot of times pretty unpredictable. As volunteers, we
are not qualified to make an assessment of when a patient will die. It could lead to enormous
disappointments if a patient were to die for instance before a loved one has the opportunity to
arrive and you told them that the patient would still be around for a couple of days.


No proselytizing in any way


Even if you mean well; it is important to meet a patient and loved ones at the place in life where
they are and accept that that is the appropriate place for them to be just as it is perfectly fine for
you to be at the place in life where you are.

If a patient or loved one initiates the topic of religion or spirituality, make sure that the
conversation remains about that and the patient If you are asked about your own views be brief
and if your views dont align, stay gracious and gentle NO arguing!
This is the patients journey


Do not argue with a patient about time, place or circumstance:


Sometimes patients get confused. If it is not upsetting to them or it does not create disturbing
behavior let them be, it is their reality. Sometimes it really benefits a patient if you go along
with their story. If a patient is agitated however you can try to explain where he or she is but only
in a very gentle loving way imagine how scary it must be to feel like things are completely out
of place/time

Sometimes the patient and/or loved ones may be in denial about the
fact that the patient is truly dying even when a patient has entered the
process of actively dying. If you ever encounter this do not take it
upon yourself to set the people involved straight.

Now that doesnt mean that I will lie when being asked directly if the
patient is going to die but I also dont seek an argument about it.

Denial is often in place for a reason it is a biological defense
mechanism. If you have grave concerns for a person who is in denial
contact hospice as soon as possible. In the mean time providing
support and a listening ear is the best you can offer.

118

Do not generalize:


People from similar beliefs and backgrounds and ethnics/cultures are not
automatically all the same and are not automatically all on the same page.
One also cannot compare grief.


Do not judge


Do not prejudge the individual or judge what you may experience.
This can be pretty hard sometimes because you may encounter all kinds of situations.
It is best to try to be alongside with a patient and/or loved ones, at the place where they are not
where one should be in societys eyes. If you find yourself judging and something is bothering
you, call hospice right away. Volunteering has to be comfortable for you as the volunteer as well.


Do not use clichs


You enter peoples life in a very stressful time and they may react to certain things more strongly
than they would on average. Even if meant well: clichs can truly hurt someones feelings.


Example:


When a persons mother has died and you say: I know how you feel, that sometimes offends
people because they may think: you dont know how I feel at all she was MY mother; how
dare you assume that you know how I feel! Under normal circumstances this same person may
have said the exact same thing to others when they suffered a loss but now he or she is under a
lot of stress himself/herself and we tend to react different when under pressure.


119

NEVER move or reposition a patient or fix a patients sheets (3)

Never reposition or move a patient; this is not within the scope of a volunteer. You can do some
serious damage to the patient and without proper training - to yourself as well and it can lead to a
lot of trouble for the hospice. Always alert facility staff members, patients loved ones, or the
hospice if the patient needs moving or repositioning.

If the patient seems uncomfortable because his or her sheets are bunched up underneath the
patients body; NEVER adjust this yourself. You can do serious damage to the patient. Request
that a staff member fixes the patients sheet or in a home setting ask a loved one to do so.

120

Do not wear too much cologne/perfume

Make sure your cologne/perfume isnt too strong especially when being around
patients and/or loved ones who already have trouble breathing comfortably.


When children are involved, do not use euphemisms


Death is a normal part of life and children can absolutely handle it when given the right
guidance. Using euphemisms can cause children to make unfounded assumptions which can
create anxieties surrounding death and dying.


Never promise a patient and/or loved ones total confidentiality


It is just not a good idea. In many situations you are obligated (sometimes by law!) to share
certain information with your supervisor or other team members.


A practical example:


A patients son told me; I know I can trust you completely, but do not tell anyone that I have
two loaded shotguns next to my bed. Im not planning anything, but I have got them there just in
case. This is an uncommon but true story. It is very easy to want to be that one person that one
can confide in but obviously this is an example of a conversation that had to be reported for legal
reasons and for safety of everyone involved in this case including the volunteer.


Example II:


A patients family member confided in me that the patient had been sexually abused by her
father. Until this day she gets upset when a man touches her belly - isnt that sad?
Please do not tell anyone, even the hospice does not know.
This same patient had pretty strong reactions every time a certain facility staff member changed
her garments. She would moan as if she was in pain and the staff member, meaning well, did
what most of us do when consoling a child; he rubbed her belly!

Needless to say that when I reported this to the hospice staff some insight was gained and it did
not happen again. The staff member felt terrible but he simply was not aware

That is where the volunteer can come in: observing is so very important for a hospice volunteer!

121

No private calls, cell phone on vibrate or silent:

It is highly inappropriate to make personal calls when being with a patient. If you truly have to
answer a call, excuse yourself and step out of the room for a while.
A loud ring from a cell phone can be disturbing to the patient and loved ones so put your phone
on vibrate or silent please. (I have assigned a specific picture to hospice in my phone so when a
hospice calls my phone will be on silent but I still know who is calling)


Do not accept gifts






It is not ethical to accept gifts from patients and/or
loved ones unless it is something minor like a thank
you note or a meal. If they insist point out that it was a
privilege for you to be allowed to lend them support and
maybe suggest that they make a contribution to the
patients favorite charitable organization.









Avoid depersonalization


Try to remember that you are dealing with a human being. A lot of times people act impersonal
around patients (especially those who are unresponsive) and just go about their business when
being in the patients room, not acknowledging the patient.
Make sure that when saying something about a patient, to do so in terms of Bill or your
mother rather than him, her, or the patient.







122

Other things to keep in mind (4)

Stick to the plan of care!


Do not provide care that is not specifically requested for a patient; it can land the hospice and
you into a lot of trouble!


Example:


I was providing transition care to a young male with very strong religious beliefs.
He was unresponsive by the time I got called in and seemed restless. Another volunteer was
trying to help and in his kindheartedness performed reiki on this patient. When the volunteer
described this in the visit progress rapport this led to a major problem because it turned out that it
was specified in the patients plan of care that because of this patients belief system, NO such
treatment was allowed!


Example II:


A volunteer I worked with was trying to be nice and cleaned up a patients house without asking.
This patient had a lot of visitors and at the end of the day there was money missing.
Nobody ever found out what happened to it but in cases like that the finger can easily be pointed
at the volunteer.

123

Respect the patients right to privacy and Mind HIPAA

Be sensitive to a patients privacy step out of a patients room every time when personal care is
provided. (I make an exception when I suspect inadequate care is provided in that case I stay
and if I feel that my suspicions are founded I will report this to hospice).


Example:


I was providing transition care at a facility. A facility staff member walked in without identifying
herself or explaining to the patient and her roommate what she was about to do. She simply
walked in, lifted up the patients sheets, said some very derogatory things to the patient and
stated oh you are dry enough. Then walked over to the patients roommate and did exactly the
same with that person and walked out.

Normally I would have left the room right away stating; let me give you some privacy.

But in this case, I (luckily) didnt get a chance to leave the room beforehand.
I happen to have experience with undergarments like that and even from where I was sitting, I
could clearly see that both these patients really did need clean garments.

Imagine being one of those patients and not being able to speak up

It was extremely hard for me to keep my mouth shut (as it is not my place to interfere) but as
soon as this staff member left the room I reported this disrespectful and unprofessional behavior
to hospice which took care of it right away: apparently this was not the first time for that
particular staff member to get similar complaints so she was fired.


If you ever suspect that a patient is not being treated well, regardless of who is
the perpetrator - ALWAYS contact hospice:


Part of your task as a hospice volunteer is to ensure the patient is treated with respect and
according to the patient care plan and to advocate for this patient if you have suspicions that his
or her rights are violated.

If you ever suspect that someone is mistreating the patient it is irrelevant what their relationship
to the patient is it is unacceptable so contact hospice right away.
Do NOT confront the person that is perpetrating that is not your place.
Hospice will handle it from there.

You dont have to worry about repercussions for blowing the whistle; hospice handles these
cases very swiftly and with integrity and discretion.

124

Mind HIPAA


Even when a patient is actively dying, all the HIPAA rules still apply and not applying yourself
while observing HIPAA can have serious consequences for hospice.


A few examples of HIPAA violations during transition care:


I was relieving a fellow volunteer for transition care. The patients loved ones asked me if
volunteers didnt have telephones. I asked them why they had that question and they replied:
because that other volunteer is on his (the patients) phone constantly.
The volunteer was in possession of the patients phone because a call was expected from the
patients mother who lived out of state and she was supposed to hold the phone to the patients
ear when that call would arrive. When I told the other volunteer about the patients question she
replied: oh Im almost done I am calling everyone in his phonebook to let them know that he
is dying so they can come say goodbye.

This volunteer acted from the kindness of her heart but this is absolutely unacceptable and an
enormous violation of HIPAA! This could lead to severe consequences for the hospice involved
and for loved ones as well you can give somebody a coronary by providing such information to
a person over the phone that you dont even know. And besides that, it is not your place to
decide who needs to be informed of the patients status.


Example II:


The roommate of a patient kept questioning me about the diagnosis of the patient voicing certain
suspicions with me. I informed him that as a transition care volunteer I am not always privy to all
the information concerning a patient and that even if I did I was not in a position to share that
information with third parties. This infuriated him even more.
When I returned the next day, he was very upset and called me basically every name in the book
because he said that he knew for a fact that this patient had AIDS and called me a name or two
more because I had withheld that information from him. (Until this day Im still not sure why he
targeted me specifically out of the whole care team I assume I reminded him of somebody).
I tactfully engaged in a conversation with him and during that conversation he calmed down and
mentioned some very much patient specific information which led me to believe that he was not
just guessing anymore.
I gained his trust and it turned out that one of the staff members had forgotten to put the patients
file away in a fairly safe spot that the whole team was aware off and the patients roommate had
read the complete case file.

Again, no bad intentions on the staff members side and the roommate should have known better
than to read confidential information but this too was a major breach of HIPAA.

125

Do NOT visit if you carry a communicable disease this includes flu and colds


You dont want to infect the patient and/or loved ones with anything that is communicable.
There are people that feel that you should be able to visit when having a common cold or a light
flu. Personally, I dont agree with that: loved ones often are exhausted from the journey that the
patient and they have been on and this may have lowered their immune system making it a lot
easier for them to catch an illness.


What about wearing a mask?






In my personal opinion, wearing a mask is not
an option either because when you walk into a
patients room while wearing a mask, the
attention (and therefore often the conversation
as well) will shift to you.

And that is more than likely going to keep
happening with everybody else that enters the
patients room and sees you wearing the mask.
People are naturally curious and that is not
why you are there; you are there for the
patient.


126

(5)




127

When you call 911 (6)

If the patient is struggling or when he or she dies: do NOT panic and call 911 this will have
serious consequences!

When 911 is called and an ambulance shows up, by law, responders HAVE to start CPR!
















It is advisable that the patient, her loved ones AND perhaps even the hospice volunteer put the
hospice phone number on speed dial instead of 911.

That way, the right phone number gets dialed and the patients rights and wishes stay protected.

A big note stating Do NOT call 911 posted by the phone may also be of help.

128

CHAPTER SEVEN (1)

Contents:

When the patient dies (slide 2) pg. 129-130

After the patient dies (slide 3) pg. 131-134

The importance of self-care (slide 4) pg. 135

Relax (slide 5) pg. 136

Closing (slide 6 & 7) pg. 137-138
129

When the patient dies (2)

If you suspect that the patient has died, tell the loved ones that you think that the patient has died
and that you need to get a nurse to confirm this. That way youd prevent painful experience for
the off chance that a patient has not died just yet.
Besides that: it is just not within the scope of a volunteer to assess the patients clinical status.

You may see an increase in mottling. Gravity makes that the blood pools in places of the body
which are the lowest so that would be along the back of a patient who is lying down or other
places that would touch the mattress such as the patients heels.


Note the time of death


Note the time off death. You are going to share the time of death with the nurse and loved ones
often ask about what time the patient died even if they were present at the time of death: it often
is important to them to know and you may hear them repeat it to others later.
Explain that as a volunteer you are not qualified to pronounce a person dead and that therefore,
the nurse will do an official examination of the patient and then will note the time of death when
he or she has established that the patient in fact has died. He or she will then notify a doctor who
has to confirm the time of death as dictated by law. How this works exactly varies from state to
state in Colorado for instance this is usually done by phone.

Loved ones have often asked me about who calls the mortuary and when.
Gently inform them that the mortuary will not be notified until the patient is officially declared
dead and that sometimes loved ones are the ones to inform the mortuary but that the hospice
nurse is often the one to do so.


Check if the patients loved ones are ok


Check how the loved ones are doing and offer comfort if needed.
Give them a little bit of time and then let them know that you are
going to inform a nurse that their loved one has died.









130

Notify hospice



Inform the hospice nurse that the patient has died and the
time of death. Some nurses will provide you with a
phone number where you can reach them directly.

There are hospices that prefer that you call the volunteer
coordinator who then in turn will inform the appropriate
staff members involved.

After regular business hours some hospices prefer that
you call an answering service which you can reach
through the main number. You then inform the operator
that you need to speak with the on-call nurse.
The operator will then either connect you to the nurse on
call or page the hospice nurse and have him or her call
you back. Overall, you will be advised to check back
with them in case you have not heard from that staff
member within 10-15 minutes.
(Usually the nurse will call back very quickly, but may
he or she be with a patient)

At a private residence, most hospices will expect you to
call the nurse who is on the care team for this patient or
after hours; the nurse on call.



In a facility; notify a staff member


Some hospices require that you to call facility staff who will take it from there.



131

After the patient dies (3)

Condolences


When the patient dies and you have checked on the loved ones, offer your sincere condolences
before doing anything else.


Thank the loved ones and compliment them


When the patient dies loved ones will usually thank you for your care when you offer your
condolences.

This is a good moment to thank them for the privilege of being allowed to be there in such an
intense and important time in their lives. Point out that they did a great job given the
circumstances.


It is not written in stone that one has to cry when a loved one dies.


Not everybody who is present when the patient dies is necessarily going to be heartbroken.
Sometimes people are very much at peace with the patients passing, sometimes people do not
show any emotions because they are just very private people and at times, a loved one doesnt
necessarily care about the fact that the patient died.

Sometimes too many things have happened in somebodys life to be able to get past them or to
express sadness around a loved ones passing. It is not the volunteers job to judge or try to fix
this, so all we can do is try to offer support with an open mind and heart.















132

If permitted by hospice and loved ones; gently close the patients eyes/mouth


If you are permitted by hospice and loved ones to do so and if you are comfortable with it; you
can offer to close the patients eyes and mouth if they happen to be open.

The eyelids usually close easily by hand and it is easiest if you keep your hand in place for a
couple of seconds this usually ensures that they will remain closed.

If the patients mouth is open you may gently close it. Check if it stays closed; if not, you may
place a rolled up wash cloth under the patients chin to prevent her mouth from opening again.
(The patients jaw relaxes which could enable a patients mouth to open again).

Even if you are permitted to do so by hospice; ALWAYS ask permission from loved ones
beforehand!

I usually ask if the patient used to sleep with her mouth open: sometimes loved ones opt to leave
it that way because that looks more familiar to them, and that is okay too.

If either one eyes, one eye or mouth keeps opening just leave it that way.

If you are NOT permitted by the hospice to do these tasks or if you do not feel comfortable doing
it, leave the patient as is. It is perfectly naturally and okay if you are not comfortable with doing
these things.


Offer loved ones some alone time with the patients body


After the patient has died loved ones may need or want to spend some time with him/her, but
they are not always aware of the fact that they have that option so kindly offer them some alone
time with the patient. Sometimes, there are things that need to be said that a loved one (for
whatever reason) has not been able to share with the patient while he or she was alive.
It may be helpful for this person to say it after the patient has died so that is another reason why I
offer loved ones alone time with the patient after death has occurred.
Some cultures dictate that certain loved ones and/or other designated people perform a final
cleansing of the body before it gets taken by the mortuary.










133

Tactfully suggest that loved ones leave the room when the mortuary comes


Explain tactfully that most people will leave the room when the staff from the mortuary comes to
pick up the body there is no graceful way to do this. You may explain to people that their loved
one will be treated very gently and with the utmost care and respect.

Most mortuaries will allow loved ones to stay present in the room during this process, but most
people opt not to do so especially when you guide them delicately in making that decision.
Keep in mind though that it has to be their decision.


Share stories about the patient while waiting for the mortuary


Waiting for the mortuary to arrive can sometimes take a while. It can be a tense time because the
loved ones may be emotional and they are aware of the fact that when the mortuary comes, they
will be separated from their beloved.

Sometimes it helps loved ones to create a gratitude list: you go around the room and ask people
to share a fond memory of their loved one or share something else, whatever they would like to
share. People can even hold hands and when somebody is done talking; he or she can squeeze the
hand of the person next to him/her when he/she is done. When someone prefers not to speak, he
or she can squeeze the next persons hand so he knows he can start talking.

Of course, just being there, simple chit-chat or silence is perfectly okay as well.


Stay with the loved ones while the mortuary prepares and picks up the body


Part of my idea of providing transition care is being present for loved ones during the whole
process of the patients death. This includes support for loved ones after the patient dies so I
always offer to say with them until the patients body is taken by the mortuary. You can offer to
accompany them to another room if one is available or to simply wait with them in the hallway
while the mortuary staff prepares the body for transport.
Loved ones overall appreciate it very much if you stay with them while the body gets removed.

134

Remind loved ones of hospice bereavement services being available

Inform and educate loved ones about bereavement services that the hospice offers.
This often does not only include family members but friends and/or other loved ones as well.

Sometimes people are not sure what to expect from bereavement or whether they may want to
take advantage of bereavement services; in that case you may gently remind them that they dont
have to make that decision on the spot.

They may contact hospice to inquire about available bereavement services at any given time.
Some hospices appreciate it if you carry bereavement information to leave with the loved ones.

At a facility; thank staff members and sign out


Staff members who work at a facility have often cared for a patient for a prolonged period of
time. They often have a bond with patients and may be sad because the patient has died.

I always thank them for caring so much for the patient (kind words never hurt anyone), and I
offer them my condolences. I also thank them for an excellent collaboration which sets a great
tone for possible future collaboration between hospice and the facility.

If I happen to see them, I also try to thank the staff members who work for hospice as well.

Dont forget to file your visit notes with hospice!

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The importance of self-care (5)

It is very important to take care of your health:


Mentally
Physically
Emotionally
Spiritually

Anybody may be at risk for caregiver burnout, it has
nothing to do with whether you love a person or care for
him or her genuinely. If you take care of yourself you
are more likely to prevent caregiver burnout.


Prevent burnout


Signs that indicate that you may be at risk for caregiver burnout:


Poor sleep pattern
Self destructive behavior substance abuse, over-eating
Short temper,
Im the only one who can help this patient
Not being able to distance yourself
Dreading to go visit a patient
Being insensitive to people
Crude humor

Contact hospice if you suspect that you or anybody else on the patients care team
is at risk for caregiver burnout or if you suspect a loved one to be in that position.
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RELAX (6)


Boundaries


Know your boundaries what you are allowed by the hospice as well as what you are
comfortable with. Knowing your boundaries will help protect you better.
Do not compromise your boundaries.
Know when to say no.
Keep track of your ethics and boundaries.
Detachment you can care for a patient but you have to maintain a professional distance.


Evaluate


Face your own death/ what are my own fears/concerns? How do I view death?
Evaluate how did this impact me, how can this experience be improved for a patient, loved
ones and myself, would I do anything different, do I have any unresolved issues?
After a death, it may be good to do a reflection: What happened, what kind of feelings, ideas or
emotions did this process evoke in me?


Support system


Surround yourself with a good support system.
Talk to your volunteer coordinator if something bothers you.
Sometimes it can also help to talk with your peers (make sure you stay within HIPAA though) or
to talk with a Chaplain or another staff member within the hospice you serve with.


Listen to music, utilize humor, go for a walk, or write poetry


Some people use music, humor, walks, poetry, journaling etc. to implement self-care.
Maintaining a healthy diet, physical exercise and/or positive self talk may work as well.


Get enough rest!


Stay updated on flu shots, hepatitis B shots etc
Observe yourself how is your mental and physical health; sleep, headaches, energy level?
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(7)

Gentle Pass Times


























May you find
some comfort here

138

Gentle Pass Times

Written and produced by:
Francisca Stolzenbach

Music sung by:
Francisca Stolzenbach