Section 2 - Common Symptoms

02/07/2019 SECTION 2 - COMMON SYMPTOMS
SECTION 2 - COMMON SYMPTOMS
Site: Moodle UC_D

Course: INTRODUCTION TO CAREGIVING FOR OLDER PEOPLE AT THE END OF LIFE#01
Book: SECTION 2 - COMMON SYMPTOMS
Printed by: Ana Serra
Date: Tuesday, 2 July 2019, 11:54 PM
www.ucd.uc.pt/moodle/mod/book/tool/print/index.php?id=3537 1/18
Table of contents
SECTION 2 - COMMON SYMPTOMS
Pain
Breathlessness
Fatigue, cachexia, anorexia
Nausea, vomiting and constipation
Confusion and delirium
Section 2 wrap up
Sources
Section credits
Welcome to Section 2!
 How you learn
Physical and psychological symptoms are a major burden for people in the final stages of life
and significantly reduce their quality of life. Experience shows that in older people some
symptoms (like pain, fatigue or confusion) do not receive sufficient attention and therefore
remain untreated, because they are considered as normal for an older person. This is why
we will look at common symptoms for older people in their last stages of life and learn about
how to approach them, firstly by recognising them and then looking at how to manage them.
Learning outcomes
At the end of this section you will be able to:
Recognise the importance of good symptom control for an older person’s quality of life.
Describe some of the symptoms most commonly experienced by older people in their
final stages of life.
Distinguish the physical and emotional aspects of symptoms.
Identify when to call healthcare services.
Pain
Most adults can clearly describe pain, its nature, and where it is located in their body.
However, towards the end of life, a general feeling of being unwell can be perceived as pain.
This is because our pain does not occur only when a part of our body hurts because of the
disease process, but we can feel pain because there is arguing in the family. We can feel
pain because we are profoundly sad due to being all the time alone. We can feel pain
because we have lost faith in God or suffered other spiritual loss.
Pain is something that is often overlooked or not taken seriously enough in older people as we
tend to think it is normal to feel some pain when we are old. This is why it is so important to make
a thorough assessment and repeat it frequently over time if we want to provide effective support
and help to control pain.
How common is pain?

 READING
In far advanced disease stages and at the end of life, pain is the most common and one of the most
distressful symptoms people experienced. Among patients living with advanced cancer, around 80%
express some level of pain. Around 25-50% of community residing older people and 45-80% of nursing
home residents also report pain. However, it also common for pain to be under recognised and
undertreated, the main reason being lack of appropriate pain assessment.
As you will see in the video below, produced by the Canadian Virtual Hospice, pain is in itself a complex
phenomenon and results from a variety of physical and non-physical factors. The physical part of pain
should be addressed and assessed together with the non-physical aspects of pain.
Video & Quiz Activity
In the video below, you will hear how multidimensional a pain experience can be. How can we assess
pain when its nature is so complex? Watch the video and later try to match the following questions with
the appropriate pain dimension in the multiple choice quiz.
Total pain
QUIZ
How does a multidimensional pain assessment look like?
 MULTIPLE CHOICE QUIZ
How to know if the older person you are caring for is in pain?
The person’s own report about the type of pain and its intensity are considered the most accurate and
reliable source of information. Asking the person to rate their pain in a numeric scale from 0 to 10 can
be a good first step. 0 will mean no pain at all and 10 the worst pain possible. If the person has difficulty
using numbers, you can use descriptor scales, thermometers or face scales like the example you can
find in this link - http://wongbakerfaces.org/. The Wong-Baker FACES pain rating scale was originally
developed for use in the pediatric setting, however it has been used with persons of all ages.
Be aware, that older people may be reluctant to report pain, believing it is a natural part of being old or
having health conditions and some believe it is not possible to control it.
Another challenge in assessing pain is recognising it in people with cognitive impairment or limitations
in communication. When we do not have the possibility to assess pain based on people’s self-report,
we rely upon the observation of seven categories:
facial expression, such as frowning or wincing.
vocalisation, such as groaning or screaming.
body movements, such as freezing or pacing.
body position, e.g. fetal position when lying in bed.
changes in interpersonal reactions, such as aggression or withdrawal.
changes in activity patterns or routines, such as changes in appetite or sleep patterns.
signs of change in mental status, such as crying or confusion.
Any of these may be a sign the person is experiencing pain. You can read more about recognising,
assessing and reassessing for pain, especially in dementia on page 37 in the document published here.
What to do about it?

Effective relief of pain towards the end of life depends on a thorough assessment to identify the
different physical, psychological, social, and spiritual aspects that are specific to each person, and to
then optimally address all of these levels. Untreated pain can lead to agitation and aggression and
treating the associated signs and symptoms with prescribed drugs, such as antipsychotics, before
treating pain can also increase disability and institutionalisation.
Below is a pain assessment mnemonic that may help you when dealing with an older person in pain:
A. Ask B. Believe C. Choose D. Deliver E. Empower
A. ASK
Ask the person regularly about the pain and always in the same way. You need to know as much as
you can about the person’s pain at any given time.
B. BELIEVE
The person experiencing pain is the expert about their own pain. Believe the person on how much
pain they feel and what relieves it.
C. CHOOSE
Choose interventions and treatments that suit the person and their family members.
D. DELIVER
Deliver treatment on time. Give the medication on schedule even if there is no pain at the time so the
pain stays away. Once the pain returns, it becomes more difficult to control. Most pain medications will
take effect within 30 minutes. This is useful to know if you have to move a person around in bed, for
example.
E. EMPOWER
Empower the person so that they, or the person deciding for them, have control over the situation to
the greatest extent possible.
ABCDE Menmonic was developed by Weissman and Dahl. It was published in 1996 in their book Cancer Pain: Diagnosis and Treatment.
Pain medication
Medications that help control pain and provide relief from pain are called analgesics.
As a care provider, try to listen attentively to the older person and try to identify any concerns regarding
taking analgesics the person may have. They may be worried about side effects or getting addicted.
Some worry that taking painkillers regularly means they won’t work when pain gets worse. Some
believe that pain is an inevitable part of being old and/or being at the end of life and therefore the pain
needs to be endured. Taking analgesics may lead people to think they will die soon or that the
medication itself will make death come more quickly. Discussing these concerns and worries is one of
the steps towards good pain management.
There are two basic groups of analgesics: opioids and non-opioids. Non-opioids are the most
commonly used and include products to ease mild to moderate pain and to lower fever. Opioids are
controlled substances a physician will prescribe for moderate to severe pain.
Types of pain medication

Simple painkillers Mild pain Paracetamol, aspirin, ibuprofen
Weak opioids Moderate pain Codeine, tramadol
Strong opioids Severe pain Morphine, oxycodone, buprenorphine, fentanyl
World
02/07/2019 Health Organization developed a three-step
SECTION 2“ladder”
- COMMONfor pain relief in adults, which is used
SYMPTOMS
regularly in palliative care. Health professional responsible for prescribing analgesics should follow this
“ladder” and start at the level appropriate to pain severity. We’ve seen that pain is a very complex
symptom. There may be a period of trial and error before finding the right medication for the older
person. During the period of optimising pain management, the older person may need some
reassurance.
 STOP!
When to call a health professional?
Below are listed situations in which you need to contact a health professional as soon as possible
and get further instructions on how to deal with pain of side effects of painkillers:
when a new pain, that is not the one the person usually has, occurs.
the pain continues after you have given three breakthrough pain medication doses
(breakthrough dose) in 24 hours.
there is a rapid increase in the intensity of the pain.
a sudden acute pain starts.
when the person suddenly starts showing signs of confusion.
if the older person is taking opioids and presents with extreme drowsiness, difficulty breathing
and jerking movements.
Breathlessness
Breathlessness is an unpleasant sensation of being unable to breathe easily. It is a
particularly distressing and frightening symptom for the person suffering from it and for
carers. It is known to significantly affect the quality of life of the person and their families.
Some people call it dyspnea or shortness of breath.
Like pain, breathlessness also has physical and non-physical parts. It can be felt not only
because of physical aspects, but also because of conflict in family (emotional) or feeling isolated
(social). For example, you will notice that if the person is scared, their breathing becomes more
difficult, and this provokes anxiety because the person feels difficulty breathing.
How common is breathlessness?

 READING
We know that respiratory problems are common in people with serious health conditions. In cancer, for
example, depending on the stage of the disease, 21-90% of patients experience shortness of breath,
even where their lungs are not directly involved in the primary disease. Breathlessness is also common
in people nearing the end of life without any specific disease diagnosis.
How to know if the older person you are caring for has difficulty
breathing?
You can recognise breathlessness by noting that the person has difficulty catching their breath, or that
their breathing is noisy, with very fast and shallow breaths. You may notice that the person is moving
their shoulders and muscles in their upper chest as if to help them breathe. You may hear wheezing
and the person may complain about chest pain. As the level of oxygen in blood becomes lower, you
can notice that the skin looks pale and bluish around the mouth and in fingernails.
The person’s self-report is the most accurate measure of breathlessness. Like in pain, visual analogue
scales are useful to assess the intensity of breathlessness. For example, we can ask the person to rate
the unpleasantness from neutral to unbearable or we may ask for one or more sensations related to
breathing (hunger for air, muscle work). As breathlessness has psychological aspects, it is important to
assess also the person’s emotional response to breathlessness, especially the anxiety or frustration
they may feel.

Breathlessness is a complex symptom that members of an interdisciplinary palliative care team can
contribute to better control. The contribution of doctors and nurses is as important as the contribution of
a psychologist, physiotherapist or occupational therapist.
Breathlessness is usually managed with medication prescribed by the doctors in combination with other
approaches, like oxygen therapy.
Among the non-pharmacological approaches to manage breathlessness are:
encourage a calm and quiet environment to help ease the anxiety.
use lightweight bedding and clothes that are not tight or constricted.
pursed lip breathing, by exhaling through tightly pressed (pursed) lips and inhaling through the nose
with the mouth closed.
02/07/2019 diaphragmatic breathing, by elevating both arms
SECTION when breath
2 - COMMON in, and bring them down when breath
SYMPTOMS
out.
use of walking aids such as wheelchair to reduce efforts of the body.
stream of air, such as fan or open window.
high sitting position is better than lying flat, so use pillows to support the back.
simple repositioning.
keeping the room well ventilated while maintaining a line of sight to the outside.
 STOP!
Below are listed situations in which you need to contact a health professional as soon as possible
and get further instructions on how to deal with breathlessness:
the person complains of chest pain.
you notice thick, yellow, green or bloody mucus being produced.
the person cannot get a proper breath for three minutes.
the skin is pale or feels cold and clammy if you touch it.
the person has fever.
the nostrils flare during breathing.
if confusion occurs very suddenly or becomes worse.
Fatigue, cachexia, anorexia
Fatigue, anorexia and cachexia form a cluster of symptoms that are often neglected until
they become more prominent. They affect most people with health conditions such as
cancer, cardiac failure, chronic obstructive pulmonary disease (COPD), renal failure and
AIDS, in advanced stages.
Until today, these symptoms are among the least well understood in why they occur. Get to know them
better by watching the following video where you will meet Dr Catarina Ribeiro, a medical oncologist
with a special interest in nutritional aspects that are closely related to these three symptoms.
 Cachexia, sarcopenia and anorexia

VIDEO
0:00 / 3:38
Download transcrip 
Why is anorexia so difficult to handle for the carers?

Anorexia or weight loss syndrome is characterised by loss of normal appetite resulting in an inability to
eat and consequently in weight loss, functional decline and muscle wasting. Cachexia is the weight loss
that results from the underlying health condition. These two symptoms - anorexia and cachexia - can be
as stressing for the person who is approaching the end of life as for their family, because in their eyes it
seems like the person is starving, though usually the person does not experience hunger. We need to
acknowledge that in many cultures food and feeding have an important meaning, associated with
caretaking, life support, love and affection for the person. Thus, a decrease of food intake may be felt
as a loss of connection or even rejection. Decreased appetite can also lead to a person feeling isolated
from their loved ones as meals are often times for socialisation.
We
02/07/2019have been observing obesity epidemicsSECTION
in our 2society and
- COMMON obesity makes it even more difficult to
SYMPTOMS
recognise anorexia and cachexia as the person can still be above the ideal body weight even with
significant weight loss.

Anorexia and cachexia are symptoms that can also benefit from a multidisciplinary approach as they
are considered chronic and multifactorial problems. There is no single therapy effective for all people
and besides the above-mentioned physical mechanisms, anxiety, depression, family stressors, and
other emotional and spiritual factors may also contribute. Remember that food support alone is unlikely
to solve the problem, as Dr. Catarina Ribeiro pointed out in the video above. She recommends a
combination of nutritional and exercise-based interventions.
Here are some useful tips that can help add quality of life towards the end of life:
Older people should be encouraged to keep active to prevent secondary muscle loss as a
result of immobilisation.
Seek formal dietary assessment and advice from a dietician.
Carers are advised to avoid conflict when people are unable to finish their meals.
If people can still eat, provide small and frequent meals, dense in energy and easy to eat.
Choose to serve meals when the person is not feeling nauseated and is free of pain.
Take special care of food presentation, use food that has different colours.
Serve meals in pleasant surroundings, avoiding intense smells.
Nausea, vomiting and constipation
How common are nausea, vomiting and constipation?
 READING
Nausea is a sensation of unease and discomfort in the stomach, while vomiting is the action
of expelling gastrointestinal contents via the mouth. Usually, these are involuntary urges.
Nausea may precede vomiting, but a person can feel nauseated without vomiting. You may
also have heard about retching, which is an attempt to vomit without bringing anything up.
These are common gastrointestinal symptoms at the end of life, affecting around 70% of people with
advanced cancer and causing distress to a considerable number of people with AIDS, heart failure,
renal failure, neurological diseases and other life-limiting conditions.
Constipation is an infrequent and difficult passage of small hard faeces. Around 80% of people at the
end of life will require laxatives. The most common reasons for constipation are immobility, poor fluid
and dietary intake and medication (e.g. opioids). Constipation can trigger nausea, both symptoms are
closely related.
Good management of these three symptoms is especially important as they may be perceived as
demeaning, affecting the person’s sense of dignity, reducing quality of life and they also may affect
compliance with treatments. The distress that results from these symptoms may escalate over time
regardless of their frequency, duration or severity.
How to know if the older person you are caring for is feeling nauseous or
is constipated?
Usually the person will tell you they feel nauseated and you may observe retching or vomiting. On one
hand, feeling nauseated is subjective and unique to the individual; on the other hand, you may observe
physical signs. Like with pain, a visual analogue or numerical scale can be used. The best way to
determine whether the person is constipated is to assess the frequency and consistency of the stools.
Observe in what ways the current pattern of bowel movement is different from the normal pattern. To
have a full assessment, a medical examination is needed.

People may experience these symptoms concurrently, but the cause may vary. Nausea and vomiting
can be triggered by various stimuli, so the first step would require identifying the trigger and try to treat,
block or remove it. For example, nausea and vomiting can be triggered by treatment or they can occur
in relation to meals. A strong emotional experience can also trigger vomiting. When the cause is
irreversible, a long-time antiemetic strategy is usually required. But prescribing antiemetic drugs is often
only one part of the management strategy. Attention should be given to dealing with the person’s
anxiety, helping the person understand the meaning of the symptoms and having realistic expectations
about managing them.
Remember that longer periods or repeated episodes of vomiting lead to dehydration. To avoid this, you
need to replace the fluids that were lost with vomiting, and make sure the person is in a lateral position
to avoid vomit aspiration.
Mouth care is a vital part of comfort care when a person is vomiting and is dehydrated. There is a range
of environmental factors that can alleviate this distressful experience, like assuring a calm and
reassuring environment, avoiding exposure to food that provokes nausea and controling odours.
Relaxation
02/07/2019 techniques and ginger tea are known
SECTIONto
2 -help. TheSYMPTOMS
COMMON doctor may find it necessary to provide
specific medication to control vomiting.
For a good control of constipation, the following can be tried:

increase the person’s mobility,
increase fluid and dietary intake, especially fibre-rich food (Orange juice before breakfast may
help, if there isn’t any contraindication to drinking it.),
consider the impact of the medication the person is taking.
Constipation is a frequent and expected side effect of using opioids. But this does not mean the opioids
should be stopped, as they are crucial in controlling other symptoms like pain. Usually your medical
doctor or a nurse will suggest increasing mobility, drinking sufficient amount of liquids and food rich in
fiber. When these approaches are not sufficient, laxatives may need to be used. Laxatives are not used
so much to achieve a particular frequency of bowel movements, but more to increase the comfort when
defecating.
 STOP!
If you notice any of the situations below, contact a health professional for help:
blood in or around the anal area or in the stools with absence of previous history of
haemorrhoids.
repeated episodes of vomiting that are difficult to control with usual approaches.
abdominal pain associated with a decrease of frequency of stools.
decrease in the frequency of stools that is very different from the normal.
Confusion and delirium
How common are confusion and delirium?
 READING
Confusion usually reflects an organic disorder from one or several causes and is worsened by distress,
pain, discomfort and being in unfamiliar surroundings. Older people with memory impairment or
decreased hearing or sight are especially at risk. Sometimes the cause is reversible but, unfortunately,
confusion is often underdiagnosed, causing unnecessary distress for patients and families.
Common causes for confusion and delirium are: medication, respiratory or urinary infections, diseases
involving changes in brain (tumours, Alzheimer’s disease, cerebrovascular diseases), metabolic causes
and drug withdrawal.
Delirium is an acute brain syndrome, usually reversible. Its severity may fluctuate, being worse at night.
. For example, 20% to 88% of people with cancer will experience delirium in their last weeks of life and
it is the most common mental disorder encountered in general hospital settings.
How to know if the older person you are caring for is confused or in
delirium?
Confusion may be present itself as forgetfulness, disorientation in time and space, changes in mood or
behaviour. More relevant to the end of life is delirium, for which there are clinical criteria and tests that
help doctors diagnose it. The essential features are:
Reduced awareness of the environment.
Impaired attention.
Impaired memory, especially recent memory.
Impaired abstract thinking and comprehension.
Disorientation in time, place and person.
Illusions and hallucinations (visual or tactile).
Transient delusions, usually paranoid.
Agitation or underactivity.
Disturbed cycle of sleeping and waking.
Incoherent speech.
Emotional disturbance (depression, anxiety, fear, irritability, euphoria, apathy, perplexity).
Not every person with delirium will experience in it in the same way. Carers may notice that delirium can
be observed in three main types:
A type where the person may appear calm, sleepy, with reduced alertness, like the person retreats
to their own world.
A type where the person is agitated but sleepy, with reduced alertness.
A type where the person is awake, agitated, with changes in the level of consciousness and this
may be accompanied by hallucinations, disorientation, change in behaviour and inappropriate
communication.
No matter the type, delirium signs start abruptly, are related to a change in the level of consciousness
and are reversible, except when they happen in the last 24-48 hours of life. This is because in the last
hours of life various organ systems start to fail.
Some people recall their delirium episodes when they get better, other do not. Studies show that those
who remember experience considerable distress over it. Their family carers too. This is why, besides
treatment and control, informing patients and carers well is so important.
The best way to go is to work preventively by explaining the underlying illness, the symptom and the
context to the person and their carers. It is important to ensure care is provided by a few trusted people,
assuring a quiet, safe, comfortable and familiar environment.
Relatives and others who are regularly in touch with the person experiencing delirium should
be explained that:
Signs of delirium show that the brain is not working properly; they are not a reflection of pain
or suffering. Even if you hear moaning and see grimaces, this is not due to pain. Increasing
pain medication in a delirium state may actually worsen it.
Before administering any additional medication, consult the doctor in charge of the care.
Try to avoid touching and speaking excessively when by the side of a person with delirium;
the person may become more agitated.
Make sure the room is as calm and comfortable as possible, without many distractions.
The presence of a close family member or friend, known objects (like a photo, memorabilia
etc.) or a night-light may have a calming effect.
Confusion is often treated using different medication, depending on its severity. However, if the
combination of drugs is not carefully reviewed and their interaction is not considered, adding new
medication, even without need for prescription, may make the confusion worse.
 STOP!
When the person represents a danger to themselves and/or to others, for example, the
person becomes violent or you or the person is hurt because of the confusion.
Section 2 wrap up
Questions to ask a health professional about the management of symptoms:
Why is this symptom happening now?

Can it be reversed?
What can I do to help alleviate it?
What effect will the symptom have on the person’s overall condition and well-being?
Could active treatment maintain or improve this person’s quality of life?
What are the likely costs and who will pay for these?
A good strategy for preparing a conversation about symptoms with a health professional is to
make a list of questions you would like to ask. Even if you feel your questions are simple, strange
or you feel uncomfortable asking them, it is important they are discussed. If it makes it easier for
you, give the list to the health professional saying that you would like to hear answers to the
questions you have put down on paper.
Questions you may want to discuss with the person you are caring for:
What are the person’s preferences for symptom management?

Is there any information or additional support the older person would like to have regarding
the symptoms they are experiencing?
Which of the symptoms is most difficult to live with or is most distressing? What helped most
in the past?
Sources
Canadian Virtual Hospice is a website with rich information on all sorts of issues we encounter
in palliative care. Click here to read their explanation of various symptoms.
They also provide a Symptom Diary you can use to track the symptoms and their
management.
Within their website, you can also find a caregiver’s guide which provids lots of useful
information, not only about symptoms but also about topics we discuss in other sections of
this course.
If you are specifically interested in dementia and difficulties in assessing pain, the booklet
produced by the University College Cork in Ireland and the Irish Hospice Foundation may be
of great help. Click here to access it.
For further reading on all relevant symptoms we encounter in palliative and end of life care in
different populations, especially if you are a medical doctor or nurse, the following textbook is a
good start:
The Textbook of Palliative Medicine and Supportive Care is a comprehensive reading source
on symptoms. It is used by health professionals when they are in training and later on, when
they are practicing their profession and want to update their knowledge. Be aware that it may
be complex and detailed reading for a family carer.
 GO TO SECTION 2 ASSESSMENT
MAJA DE BRITO
AUTHORS BARBARA GOMES
CATARINA RIBEIRO
JOANA RENTE
DUARTE SOARES
UC © 2018
PARTNERS
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02/07/2019 SECTION 2 - COMMON SYMPTOMS

SECTION 2 - COMMON SYMPTOMS

Site: Moodle UC_D

 How you learn

How common is pain?

Video & Quiz Activity

 MULTIPLE CHOICE QUIZ

What to do about it?

A. Ask B. Believe C. Choose D. Deliver E. Empower

Types of pain medication

How common is breathlessness?

What to do about it?

 Cachexia, sarcopenia and anorexia

Why is anorexia so difficult to handle for the carers?

What to do about it?

What to do about it?

For a good control of constipation, the following can be tried:

Questions to ask a health professional about the management of symptoms:

Why is this symptom happening now?

What are the person’s preferences for symptom management?

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