Psychological issues in advancing illness

Although many people die suddenly, many people who are terminally ill know that they are
going to die for some time before their death. As a consequence, a variety of medical and
psychological issues arise for the patient.

Continued treatment and advancing illness:

Advancing and terminal illness frequently brings the need for continued treatments with
debilitating and unpleasant side effects.
For example:
• Radiation therapy and chemotherapy for cancer patients may produce discomfort, nausea
and vomiting, chronic diarrhea, hair loss, skin discoloration, fatigue and loss of energy.
• The patient with advancing diabetes may require amputation of extremities such as
fingers or toes.
• The patient with advancing cancer may require removal of an organ to which the illness
has now spread.

Many patients find themselves repeated objects of surgical or chemical therapy in a desperate
effort to save their lives; after several such efforts, the patient may resist any further intervention.
Patients have undergone repeated surgery/ chemotherapy may feel that they are being
disassembled bit by bit.
Each procedure raises anew the threat of death and underscores the fact that the disease has not
been arrested, and in many cases, the sheer number of treatments can lead to discomfort,
exhaustion and depression.
Thus there comes a time when the question of whether to continue treatments becomes an issue.
In some cases refusal of treatments may indicate depression and feelings of hopelessness, but in
many cases, the patient’s decision may be supported by thoughtful choice.

Right to die:

In recent years, the right to die has assumed importance due to several legislative and social
trends.
• In 1990, Congress passed the Patient Self-Determination Act, requiring that Medicare and
Medicaid health care facilities have written policies concerning patients’ wishes for life-
prolonging therapy.
 • These policies include the provision of a Do Not Resuscitate (DNR) order, which patients
may choose to sign or not, in order to provide explicit guidance regarding their
preferences for medical response to cardiopulmonary arrest.
• In India – Maruti Shripati Dubal Case, Aruna Shanbaug case.

An important social trend affecting terminal care is the right-to-die movement, which maintains
that dying should be a matter of personal choice and personal control. Receptivity to such ideas
has increased over the years (people in great pain with no hope of improvement had the moral
right to commit suicide/ treatment should be withheld if the patient was maintained completely
by a life support system). However, experts have expressed that these preferences may change
when people are actually facing death.

There is by no means agreement on the criteria under which requests for assisted suicide might
be honored, and many people view the assisted suicide movement with concern. Until genuine
access to comprehensive hospice and good-quality care becomes a reality for dying patients and
their families, assisted suicide may result from unmet needs rather than a genuine choice.

Moral and legal issues:

Increasingly societies must struggle with the issue of euthanasia, that is, ending the life of a
person who is suffering from a painful terminal illness.
Euthanasia comes from the Greek word meaning ‘good death’. Terminally ill patients most
commonly request euthanasia or assisted suicide when they are experiencing extreme distress
and suffering, often due to inadequate relief from pain.

In 1994, Oregon became the first state to pass a law permitting physician-assisted dying.
Generally, at the patient’s request, the physician provides a lethal dose of medication or sleeping
pills that the patient can then ingest to end his or her life.
Although a 1997 Supreme Court ruling did not find physician-assisted dying to be a
constitutional right, the court nonetheless left legislation to individual states, and so the 1997
Oregon Death with Dignity Act became official, with the first physician-assisted death occurring
in 1998.

Support for euthanasia has dropped over the recent years with people increasingly critical of the
idea of assisted suicide, or they may stem from the fact that physicians now feel better able to
handle the psychological issues that arise at the end of life.

More passive measures to terminate life have also received attention.

 • A number of states have now enacted laws enabling people with terminal diseases to
write a living will, requesting that extraordinary life-sustaining procedures not to be used
if they are unable to make this decision on their own.
• The living will, which is signed in front of witnesses, is usually drawn up when the
person is diagnosed as having a terminal illness. It provides instructions and legal
protection for the physician, so that life-prolonging interventions, such as the use of
respirator, will not be indefinitely undertaken in a vain effort to keep the patient alive.
This kind of document also helps ensure that the patient’s preferences, rather than a
surrogate’s are respected.

Unfortunately, research suggests that many physicians ignore the wishes of their dying patients
and needlessly prolong pain and suffering. The complex moral, legal, and ethical issues
surrounding death are due to substantial advances in health care technologies. Life sustaining
drugs, cardiopulmonary resuscitation, advanced cardiac life support, renal dialysis, nutritional
support and hydration, mechanical ventilation, organ transplantation, antibiotics – all were
unheard of earlier. However, we have not understood how to make appropriate use of these
technologies.
i. First, there is substantial inequity in access to life-sustaining technologies. Those patients
who are better off financially and who have better health insurance have greater access to
and are more likely to receive these life-sustaining technologies.
ii. Second, we do not yet have enough guidelines regarding cost effectiveness and
appropriateness of use. That is, life-sustaining technologies are often extremely
expensive, and guidelines must be developed as to when and with whom such
interventions are appropriate.
iii. Third, most societies have yet to achieve consensus on the appropriate role that people
may play in choosing the time and means of their deaths and the roles that health care
practitioners may or may not play in assisting this process.

Psychological and social issues related to dying

1. Changes in the patient’s self-concept:

Advancing illness can threaten self-concept. As the disease progresses, patients are increasingly
less able to present themselves effectively. It may become difficult for them to maintain control
of biological and social functioning. They may be incontinent; they may drool, have distorted
facial expressions, or shake uncontrollably. None of this is attractive either to the patient or to
others.
These patients may also be in intermittent pain, may suffer from uncontrollable retching or
vomiting, and may experience a shocking deterioration in appearance due to weight loss, the
stress of treatments, or the sheer drain of illness.
Even more threatening to some patients is mental regression and the inability to concentrate.
Losses in cognitive function may also be due either to the progressive nature of the disease or to
the tranquilizing and disorienting effects of painkillers and other medications.

2. Issues of social interaction:

The threats to the self-concept that stem from loss of mental and physical functioning spill over
into threats to social interaction. Although terminally ill patients often want and need social
contact, they may be afraid that their obvious mental and physical deterioration will upset
visitors. Thus, patients may begin a process of social withdrawal, whereby they gradually restrict
visits to only a few family members.
Family and friends can help make this withdrawal less extreme: They can prepare visitors in
advance for the patient’s state so that the visitor’s reaction can be controlled; they can also screen
out some visitors who cannot keep their emotions in check.

Following are the reasons for withdrawal of terminally ill patients from social situations

• Some disengagement from the social world is normal and may represent the grieving
process through which the final loss of family and friends is anticipated. This period of
anticipatory grieving may exacerbate communication difficulties because it is hard for the
patient to express affection for others while simultaneously preparing to leave them.
• In other cases, withdrawal may be caused by fear of depressing others and becoming an
emotional burden. The patient may feel guilty for taking up too much of the family’s
time, energy, and money and may, therefore, withdraw so as not to be even more of a
burden. In such cases, it is easy for misunderstandings to arise. The family may
mistakenly believe that the patient wishes to be left alone and so may respect their
wishes. Instead, family and friends may need to make a concerted effort to draw out the
patient to forestall a potential severe depression.
• Yet another cause of withdrawal may be the patient’s bitterness over impending death and
resentment of the living. In such cases the family needs to understand that such bitterness
is normal and that it usually passes.

Thus social interactions of the terminally ill are complex and marked by the patient’s gradual
withdrawal.
 3. Communication issues:
As the patient’s prognosis worsens and treatment becomes more drastic, communication usually
breaks down. Medical staff may become evasive when questioned about the patient’s status.
Family members may be cheerfully optimistic with the patient but confused and frightened when
they try to elicit information from the medical staff.

This breakdown in communication can be traced to several factors:

• First, death itself is still a taboo topic in our society. The issue is generally avoided in
polite conversation; little research is conducted on death; and even when death strikes
within a family, the survivors often try to bear the grief alone. People usually do not bring
up the topic at all.
• Secondly, each person involved may believe that others do not want to talk about the
death. Moreover, each of the participants may have personal reasons for not wanting to
discuss death. Some patients do want to hear the answers to their unasked questions
because they know the answers and fear having to cope with the finality of having them
confirmed.
• Family members may wish to avoid confront any lingering guilt they have over whether
they urged the patient to see a doctor soon enough or whether they did everything
possible.
• Medical staff may fear having to cope with the reproaches of family members or the
patient over whether enough was done.

4. The issue of non-traditional treatment

As both health and communication deteriorate, some terminally ill patient turn away from
traditional medical care. Many such patients fall victim to dubious remedies offered outside the
formal health care system. They are sometimes so frantic at the prospect of death that they will
use up both their savings and those of the family in the hope of a miracle cure. In other cases, the
turn to nontraditional medicine may be a symptom of a deteriorating relationship with the health
care system and the desire for more humanistic care.

However, criticism of nontraditional medicine should not be taken to mean that no patient ever
benefits from them. Many times placebos alone effect miracle cures in some cases.

Psychological management of the terminally ill

1. Medical staff and the terminally ill patient

Many terminal ill patients die in the hospital. Unfortunately, death in the institutional
environment can be depersonalized and fragmented.
• Wards may be understaffed, with the staff unable to provide the kind of emotional
support the patient needs.
• Hospital regulations may restrict the number of visitors or the length of time that they can
stay, thereby reducing the availability of support from family and friends.
• Pain is one of the chief symptoms in terminal illness, and in the busy hospital setting, the
ability of patients to get the kind and amount of pain medication they need may be
compromised.
• Moreover, prejudices against drug treatment for pain still exists, and so terminally ill
patients run the risk of being undermedicated for their pain.
• Death in an institution can be a long, lonely, mechanized, painful and dehumanizing
experience.

2. The significance of hospital staff

• Physical dependence on hospital staff is great because the patient may need help for even
the smallest activity, such as brushing teeth or turning over in bed.
• They are dependent on the hospital staff for amelioration of their pain.
• And staff may be the only people to see a dying patient on a regular basis if he has no
friends or family who visit regularly.
• Staff may be the only people who know the patient’s actual physical state; hence, they are
the patient’s only source of realistic information.
• They may also know the patient’s true feelings when others do not; often, patients put up
a cheerful front for family and friends s as not to upset them.
• The patient, then, may welcome communication with staff because he can be fully candid
with them.
• Finally, staff are important because they are privy to one of the patient’s most personal
and private acts, the act of dying.

3. Risks of terminal care for staff

Terminal care is hard on hospital staff. It is the least interesting physical care because it is often
palliative care – that is, care designed to make the patient feel comfortable – rather than curative
care – that is, care designed to cure the patient’s disease. Terminal care involves a lot of
unpleasant custodial work, such as feeding, changing, and bathing the patient. Even more
important is the emotional strain that terminal care places on staff. The staff may burn out from
watching patient after patient die, despite their best efforts.
Staff may be tempted to withdraw into a crisply efficient manner rather than a warm and
supportive one so as to minimize their personal pain. Physicians, in particular, want to reserve
their time for patients who can most profit from it and consequently, may spend little time with a
terminally ill patient. Unfortunately, terminally ill patients may interpret such behavior as
abandonment and take it very hard.

Accordingly, a continued role for the physician in the patient’s terminal care in the form of brief
but frequent visits is desirable. The physician can interpret confusing physical changes and allay
anxiety by providing information and a realistic timetable of events. The patient and the
physician may also make decisions about subsequent medical interventions, such as the use of
life support systems and the living will.

Counseling and therapy for the terminally ill

Individual Counseling with the Terminally Ill

Many patients need the chance to talk with someone about how they feel about themselves, their
lives, their families, and death, and they need an opportunity to regain a sense of control over
their lives. Typically, medical staff cannot devote the kind of time required for this support.
Accordingly, therapy for dying patients is becoming an increasingly available and utilized
option.

Therapy with the dying is different from typical psychotherapy in several respects.

• First, for obvious reasons, it is likely to be short term.

• The format of therapy with the dying also varies from that of traditional psychotherapy.
• The nature and timing of visits must depend on inclination and energy level of the
patient, rather than on fixed schedule of appointments.
• The agenda should be set at least partly by the patient. And if an issue arises that the
patient clearly does not wish to discuss, this wish should be respected.
• Terminally ill patients may also need help in resolving unfinished business. Uncompleted
activities may prey on the mind, and preparations may need to be made for survivors,
especially dependent children. Through careful counseling, a therapist may help the
patient come to terms with the need for these arrangements, as well as with the need to
recognize that some things will remain undone (Abrams, 1966).

Some thanatologists - that is, those who study death and dying – have suggested that
behavioural and cognitive-behavioural therapies can be constructively employed with dying
patients (Sobel, 1981), For example, progressive muscle relaxation can ameliorate discomfort
and instill a renewed sense of control. Positive self-talk, such as focusing on one’s life
achievements, can undermine the depression that often accompanies dying.

Therapy with the dying is challenging. It can be emotionally exhausting to become intimately
involved with people who have only a short time to live. Further, few guidelines are available for
clinical thanatology – that is, therapy with the dying. Nonetheless, such efforts can help dying
people place their lives into perspective prior to death.
Many people find meaning in symbolic immortality, a sense that one is leaving behind a legacy
through one’s children or one’s work or that one is joining the afterlife and becoming with God
(Lifton, 1977). Thus, the last weeks of life can crystallize the meaning of a lifetime.

Family Therapy with the Terminally Ill

Sometimes, the preferable therapeutic route with dying patients is through the family. Dying
does not happen in a vacuum but is often a family experience. As a consequence, family therapy
can be an appropriate way to deal with the most common issues raised by terminal illness:
communication, death-related plans and decisions, and the need to find meaning in life while
making a loving and appropriate separation. Sometime, the therapist will need to meet separately
with family members as well as with the patient.

Family and patient may be mismatched in their adjustment to the illness:

• For example, family members may hold out hope, but the patient may be resigned to the
prospect of death.
• Moreover, the needs of the living and the dying can be in conflict, with the living needing
to maintain their resources and perform their daily activities at the same that the patient
needs a great deal of support. A therapist can help family members find a balance
between their own needs and those of the patient.
• Other conflicts may arise that require intervention. If a patient withdraws from some
family members but not others, a therapist can anticipate the issues that may arise so that
the patient’s withdrawal is not misunderstood, becoming a basis for conflict.
• Both patients and family members may have difficulty saying what they mean to each
other; therapists can interpret what patients and family members are trying to express.

For many families, terminal illness can be a time of great closeness and sharing. It may be the
only time when the family sets aside time to say what their lives within the family have meant.

Alternative to Hospital Care for the Terminally Ill

Hospital care for the terminally care is palliative, emotionally wrenching, and demanding of
personalized attention in ways that often go beyond the resources of the hospital. This has led to
the development of treatment alternatives. As a result, the two types of care have become
increasingly popular: hospice care and home care.

1. Hospice care

In recent decades, hospice care has emerged as a type or care for the dying. The idea behind
hospice care is the acceptance of death in a positive manner, emphasizing the relief of sufferers
rather than the cure of illness. Hospice care is designed to provide palliative care and emotional
support to dying patients and their family members.

In medieval Europe, a hospice was a place that provided care and comfort for travelers. In
keeping with this original goal, hospice care is both a philosophy concerning a way of dying and
a system of care for the terminally ill. Hospice care may be provided in the home, but is also
commonly provided in free-standing or hospital – affiliated units called hospices. Typically, care
is aimed toward managing symptoms, such as reducing pain and controlling nausea.

Most importantly, the patient’s psychological comfort is stressed. Patients are encouraged to
personalize their living areas as much as possible by bringing in their own family things. Thus, in
institutional hospice care, each room may look very different, reflecting the personality and
interests of its occupant. Patients also wear their own clothes and determine their own activities
in an effort to establish the kind of routine they might develop on their own at home.

Hospice care is particularly oriented toward improving a patient’s social support system.
Restrictions on visits from family or friends are removed as much as possible. Family may be
encouraged to spend full days with the patient, to stay over in the hospice if possible, and to eat
together with the patient.

Staff are especially trained to interact with the patients in a warm, emotionally caring way.
Usually, therapists are made available – either on an individual basis or through family therapy –
to deal with such problems as communication difficulties and depression. Some programs also
make discussion groups available to patients who wish to discuss their thoughts with others who
are also facing death.
Other hospices make use of volunteers who provide support to dying patients. Examination of
hospice records has revealed that patients who receive support from volunteers live significantly
longer than those who do not.

When hospice care was first initiated, there was some concern that moving a patient to a facility
that specialized in death – as hospices, in essence, do –would depress and upset both patients and
family members. Such fears have largely provided groundless.
Evaluations of hospice care suggest that it can provide palliative care on par with that in
hospitals – and are emotionally satisfying care for both patients and their families. However,
there are sometimes problems attracting trained nurses and medical staff to such units, because
palliative care is less technically challenging than other forms of medical care (Sorrentino,
1992).
Although hospices were originally developed to be facilities separate from hospitals, their
success as a treatment model has led to their increasingly being incorporated into traditional
hospitals. In addition, many hospice programs now involve home care, with residential hospice
care as a backup option. In many ways, this flexible program can meet all needs: Patients can
remain home as long as the family members are able to manage it but receive professional care
when the patients’ needs exceed the families’ abilities.

2. Home Care
In recent years, we have witnessed renewed interests in home care for dying patients. Home care
appears to be the care of choice for substantial percentage of terminally ill patients (National
Hospice and Palliative Care Organization, 2007).
• Because hospital costs have escalated so markedly, many people cannot afford
hospitalization for terminal illness, particularly if the death is long and drawn out.
• Also, some managed care programs do not fully cover hospital or residential hospice
costs for some terminal illnesses.
Although home care would solve many logistical difficulties, the important question of quality of
care arises. Can patients receive as competent care at home as in the hospital? Researchers who
have examined this issue believe that usually they can, provided that there is regular contact
between medical personnel and family members and that the family is adequately trained.

Psychological factors are increasingly raised as legitimate reasons for home care.
• In contrast to the mechanized and depersonalized environment of the hospital, the home
environment is familiar and comfortable.
• The patient is surrounded by personal items and by loving family rather than by medical
staff. The ability to make small decisions, such as what to wear or eat, can be maintained.
 • The strongest psychological advantages of home care, then, are the opportunity to
maintain a sense of control and the availability of social support.

Although home care is often easier on the patient psychologically, it can be very stressful for the
family.
• Even if family is able to afford around- the- clock nursing, often at least one family
member’s energies must be devoted to the patient on an almost full- time bases.
• Given work schedules and other daily tasks, it may be difficult for any family member to
do this. Such constant contact with the dying person is also stressful.
• Family members may be torn between wanting to keep the patient alive and wanting the
patient’s suffering to end.
• Home care does give the family an opportunity to share their feelings and to be together
at this important time.

These benefits may well offset the stressors, and studies often find that families prefer home to
hospital care.