CARING THE TERMINAL ILL

COUNSELLING IN HOSPITAL
SETTINGS
CARING THE TERMINAL ILL
EXISTENTIAL ISSUES- MEANING MAKING,
PATIENT’S EXPERIENCE OF DYING
GRIEF AND BEREAVEMENT COUNSELLING

WHAT IS TERMINAL ILLNESS
 A terminal illness is a disease that cannot be cured or treated and is
thus likely to cause death within no more than a few years.
 A person diagnosed with a terminal illness is often likely to experience
a wide range of emotions, such as grief , regret, or sadness
 This term is more commonly used for progressive diseases such as
cancer or advanced heart disease than for trauma.

LIST OF TERMINAL DISEASES THAT CANNOT BE
CURED
 Rheumatoid Arthritis (RA)
 Schizophrenia
 Poliomyelitis
 Muscular Dystrophy (MD)
 Chronic Obstructive Pulminary
Disease (COPD)
 Cystic Fibrosis
 Scleroderma
 Multiple Sclerosis (MS)
 Parkinson’s Disease
 Amyotrophic Lateral Sclerosis
 (ALS) – Lou Gehrig's Disease
 Alzheimer’s and Dementia

 It is often recommended that those diagnosed with a terminal illness
join a support group and/or see a counselor who can help them
understand and come to terms with their diagnosis.
 In counseling or support groups, people may be able to express the
complex emotions and feelings that are often likely to accompany a
terminal diagnosis.
 Coming to terms with death is likely to be a difficult experience, and
individuals who have a terminal illness may experience conflicting and
varied emotions.

 Upon first receiving their diagnosis, an individual may feel numb,
possibly calm, or even accept the news in a matter-of-fact way, as if
they have not yet fully absorbed the reality of the situation.
 Many people might experience uncertainty, as they do not know
exactly how much longer they will live or how their bodies will
change as the disease progresses.
 Sadness, fear , anger, frustration, regret, and uncertainty may
eventually be followed by feelings of acceptance and relief.

CARING THE TERMINAL ILL
 PSYCHOLOGICAL MANAGEMENT OF THE TERMINALLY ILL
 Medical Staff and the Terminally Ill Patient
 Death in the institutional environment can be depersonalized and
fragmented.
 Wards may be under-staffed, with the staff unable to provide the
kind of emotional support a 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 amount of pain
medication they need may be compromised.
 Prejudices against drug treatments for pain still exist, and so terminal
patients run the risk of being undermedicated for their pain
 Death in an institution can be a long, lonely, mechanized, painful, and
dehumanizing experience.

 The Significance of Hospital Staff to the Patient
 The physical dependence on hospital staff is great because the patient
may need help for even the smallest activity, such as turning over in bed.
 Patients are entirely dependent on the medical staff for the reduction of
their pain.
 And staff may be the only people to see a dying patient on a regular
basis if he or she has no friends or family who visit regularly.
 Moreover, 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.
 The patient may welcome communication with staff because he or she
can be fully candid with them.

 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, carefully 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, and sometimes symptoms go
undertreated.
 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.

 Achieving an Appropriate Death
 Psychiatrist Avery Weisman (1972, 1977), a distinguished clinician who
worked with dying patients for many years, outlined a useful set of goals
for medical staff in their work with the dying:
 • Informed consent —Patients should be told the nature of their
condition and treatment and, to some extent, be involved in their own
treatment.
 • Safe conduct —The physician and other staff should act as helpful
guides for the patient through this new and frightening stage of life.
 • Significant survival —The physician and other medical staff should
help the patient use his or her remaining time as well as possible.

 • Anticipatory grief —Both the patient and his or her family members
should be aided in working through their anticipatory sense of loss and
depression
 • Timely and appropriate death —The patient should be allowed to die
when and how he or she wants to, as much as possible. The patient
should be allowed to achieve death with dignity.
 These guidelines, established many years ago, still provide the goals
and means for terminal care.
 Unfortunately, a “good death” is still not available to all.
 A survey of the survivors of 1,500 people who had died revealed that
dying patients often had not received enough medication to ease their
pain and had not experienced enough emotional support.
 Lack of open communication and lack of respect from medical staff are
two other common complaints

 Counseling with the Terminally Ill
 Many dying patients need the chance to talk to a counselor.
 Therapy is typically short-term and the nature and timing of the visits
typically depend on the desires and energy level of the patient.
 Moreover, in working with the dying, patients typically set the agenda.
 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 the inclination and
energy level of the patient, rather than on a 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.

 Some thanatologists —that is, those who study death and dying—have
suggested that behavioral and cognitive-behavioral therapies can be
constructively employed with dying patients (Sobel, 1981).
 For example, progressive muscle relaxation can reduce the 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.
 Family therapy can also be an appropriate way to deal with issues
raised by terminal illness, to help the family and patient recognize and
plan for the future

 The Management of Terminal Illness in Children
 Working with terminally ill children is perhaps the most stressful of all
terminal care.
 As a result, family members, friends, and even medical staff may be
reluctant to talk openly with a dying child about his or her situation.
 Nonetheless, terminally ill children often know more about their situation
than they are given credit for
 Children use cues from their treatments and from the people around
them to infer what their condition must be.
 As their own physical condition deteriorates, they develop a conception
of their own death and the realization that it may not be far off, as this
exchange shows:

 TOM: Jennifer died last night. I have the same thing. Don’t I?
 NURSE: But they are going to give you different medicines.
 TOM: What happens when they run out?
 It may be difficult to know what to tell a child.
 Unlike adults, children may not express their knowledge, concerns, or
questions directly.
 They may communicate the knowledge that they will die only indirectly,
as by wanting to have Christmas early so that they will be around for it.
 Or they may suddenly stop talking about their future plans.

 Counseling with a terminally ill child may be required and typically
follows some of the same guidelines as is true with dying adults, but
therapists can take cues about what to discuss from the child, talking
only about those issues the child is ready to discuss.
 Parents, too, may need counseling to help them cope with the
impending death.
 They may blame themselves for the child’s illness or feel that there is
more they could have done.
 The needs of other children may be passed over in the process of
dealing with the dying child’s situation.
 A counselor working with the family can help restore balance

 Parents of dying children experience an enormous stress burden to
the degree that they sometimes have symptoms of post-traumatic
stress disorder.
 The emotional distress of parents with dying children may require
supportive mental health services, especially during the first few
months after the child’s diagnosis

 ALTERNATIVES TO HOSPITAL CARE FOR THE
TERMINALLY ILL
 Hospice Care
 In recent decades, hospice care has emerged as a type of care for the
dying.
 The idea behind hospice care is the acceptance of death, emphasizing
the relief of suffering rather than the cure of illness.
 Hospice care is designed to provide palliative care and emotional
support to dying patients and their family members.
 About 1.58 million people received services from hospices in 2010,
making hospice care a significant contributor to the delivery of services
to advancing in terminally ill patients (National Hospice and Palliative
Care Organization, 2011).

 In medieval Europe, a hospice was a place that provided care and
comfort for travelers.
 Hospice care may be provided in the home, but may also be provided
in free-standing or hospital-affiliated units called hospices.
 Typically, painful or invasive therapies are discontinued.
 Instead, care is aimed toward managing symptoms, such as reducing
pain and controlling nausea.
 Most important, the patient’s psychological comfort is stressed.
 Patients are encouraged to personalize their living areas as much as
possible by bringing in their own familiar things

 Thus, in institutional hospice care, each room may look very different,
reflecting the personality and interests of its occupant.
 Patients also typically wear their own clothes and determine their own
activities.
 Hospice care is oriented toward improving a patient’s social support
system.
 Restrictions on visits from family or friends are removed as much as
possible.
 Staff is specially trained to interact with patients in a warm, emotionally
caring way.
 Usually, counselors are available for individual, group, or family
intervention.

 Home Care
 Home care appears to be the care of choice for most terminally ill
patients and for many patients, it may be the only economically feasible
care.
 The psychological advantages of home care are that the patient is
surrounded by personal items and by family rather than medical staff.
 Some degree of control can be maintained over such activities as what
to eat or what to wear.
 Although home care is often easier on the patient psychologically, it can
be very stressful for the family.
 Even if the family can afford around-the-clock nursing, often at least one
family member’s energies must be devoted to the patient on an almost
full-time basis.

 The designated caregiver must often stop working and also face the
additional stress of constant contact with the prospect of death.
 The caregiver may be torn between wanting to keep the patient alive
and wanting the patient’s and their own suffering to end.

EXISTENTIAL ISSUES
 MEANING MAKING
 Death is a universal transition that knocks on every family's door.
 It is perhaps the most stressful event family members will face,
depriving them of an irreplaceable person that they love.
 Research shows the following factors influence the meaning that
people make of death:
 Culture or ethnicity : Rituals around death and the way emotions are
expressed differently from culture to culture.
 The mourning period, the role of extended family, the roles of men
versus women, and coping strategies all vary according to culture.
 What one culture views as normal another may see as abnormal.

 Gender : Research suggests that women are more likely to take on
caregiving roles and men are more likely to manage tasks such as
burial, finances, andfuneral arrangements.
 Men seem to benefit more from counseling while women need help
rethinking and reshaping their lives.
 Often married couples experience differences in the way they grieve.
 Religion : Religious beliefs, religion, and spiritual support are important
resources for coping with death.
 Religion can provide an anchor and a feeling of divine purpose.
 Family beliefs : How a family views the world influences its coping
strategies.
 For some families, open displays of emotion are acceptable while for
others they are not.

 Hope plays a crucial place to encourage anyone providing care for the
terminally ill.
 Hope
 Hope enables an individual both to consider a future and to actively bring
that future into being.
 Hope is a valued and realistic possibility that energize action of the
individual
 Hope has the capacity to embrace the reality of an individual’s suffering
without escaping from it (false hope) or being suffocated by it (despair,
helplessness, hopelessness).
 Hope is unique to each person.
 During terminal illness, the future being considered will become more
focused, yet hope is essential for an individual to transcend despair and
complete crucial life tasks.

 Enabling Hope
 Acknowledging Individual Uniqueness
 To enable hope, the care provider must acknowledge the uniqueness of
the individual and take seriously the dreams of the terminally ill person
within the changing nature of the illness.
 care providers need to do the following to create hope :
 Consider all language used, and appreciate how easily hopes can be
disabled by such terms as “hopeless situation” or “nothing more can be
done.”

 Encounter the individual’s feelings at his or her own level; be willing to
stay at that individual’s level and allow him or her to lead
 Be willing to take the necessary time to establish rapport with the
individual in order that his or her hopes can be shared in a supportive
atmosphere. Where appropriate, use physical contact to build trust.
 Realize the changing nature both of the disease and the accompanying
hopes.
 At one point, a hope for a cure may be the necessary activating force for
an individual to undergo treatment; at another, a hope to consider one’s
dying may give the energy to complete crucial life tasks or endure the
many losses of terminal illness.

 Granting Control
 An individual must be willing to take the necessary action to achieve
what is hoped for.
 Terminal illness places many restrictions upon an individual and often
robs that person of a feeling of being able to control the situation, thus
leading to increasing helplessness and hopelessness.
 To counter this, efforts must be made not only to support an individual
in hoping, but also to grant the person control in bringing realistic hopes
into being.
 To help support an individual’s sense of control in order to enable active
hoping, care providers need to do the following:

 Provide honest and accessible information regarding the progress of
the illness.
 Allow an individual to express and work through many hopes in order
to develop those hopes appropriate to him or her in the present
context.
 Allow for freedom of choice regarding treatment options to the degree
possible within the setting.
 Maximize the present possibilities for achieving hopes while allowing
for the changing realities of a terminal illness.

 Supporting Spirituality
 A component of hope is spirituality.
 Supported by faith in God, hope is the capacity to transcend present
suffering, to lift one’s perspective to future possibilities, and so to enable
that individual to accomplish important life tasks
 To enable this spiritual aspect of hope, care providers need to do the
following:
 Accept the individual’s own spiritual journey and present level of faith
(or lack of).
 Be open to expressed hopes that link with religious belief (e.g., “God
will cure me” or “I pray that God will take me home soon”).

 Allow for spiritual struggle and its resultant emotions (e.g., anger
when “the cancer is back and God has failed to cure me!”).
 Be prepared to accept the reality of death as an aspect of hope.
 Accept an individual who has shifted hope to how he or she wishes
to die, to life after death, to a meeting with deceased loved ones, and
so on.
 Enable an individual to have access to whatever means and rites of
religion that will encourage his or her hope

 PATIENT’S EXPERIENCE OF DYING
 Elisabeth Kübler-Ross, a pioneer in the study of death and dying,
suggested that people pass through five stages as they adjust to the
prospect of death: denial, anger, bargaining, depression, and
acceptance.
 Denial:-
 Denial is a defense mechanism by which people avoid the implications
of illness.
 They may act as if the illness were not severe, it will shortly go away,
and it will have a few long-term implications.
 In extreme cases, the patient may even deny that he or she has the
illness, despite having been given clear information about the
diagnosis

 Denial, is the subconscious blocking out of the full realization of the
reality and implications of the disorder
 Denial is both normal and useful because it can protect the patient from
the full realization of impending death .
 Usually it lasts only a few days.
 When it lasts longer, it may require psychological intervention.
 Anger:-
 A second reaction to the prospect of dying is anger.
 The angry patient is asking, “Why me? why should I be the one who is
dying?”
 The angry patient may show resentment toward anyone who is healthy,
such as hospital staff, family members, or friends.

 Angry patients who cannot express their anger directly by being irritable
may do so indirectly by becoming embittered.
 Bitter patients show resentment through death jokes, cracks about their
deteriorating appearance and capacities, or pointed remarks about all
the exciting things that they will not be able to do because those events
will happen after their death.
 Anger is one of the harder responses for family and friends to deal with.
 They may feel they are being blamed by the patient for being well.

 The family may need to work together with a therapist to understand that
the patient is not really angry with them but at fate; they need to see that
this anger will be directed at anyone who is nearby, especially people
with whom the patient feels no obligation to be polite and well behaved.
 Unfortunately, family members often fall into this category.
 Bargaining:-
 Bargaining is the third stage of Kübler-Ross’s formulation.
 At this point, the patient abandons anger in favor of a different strategy:
trading good behavior for good health.

 Bargaining may take the form of a pact with God, in which the patient
agrees to engage in good works or at least to abandon selfish ways in
exchange for better health or more time.
 A sudden rush of the charitable activity or uncharacteristically pleasant
behavior may be a sign that the patient is trying to strike such a bargain.
 Depression:-
 Depression, the fourth stage in Kübler- Ross’s model, may be viewed as
coming to terms with lack of control.
 At this stage, patients may feel nauseated, breathless, and tired. They
may find it hard to eat, to control elimination, to focus attention, and to
escape pain or discomfort.

 Kübler-Ross refers to the stage of depression as a time for “anticipatory
grief,” when patients mourn the prospect of their own deaths.
 This grieving process may occur in two stages, as the patient first comes
to terms with the loss of past valued activities and friends and then
begins to anticipate the future loss of activities and relationships.
 Acceptance :-
 The final stage in Kübler-Ross’s theory is acceptance.
 At this point, the patient may be too weak to be angry and they make
peace with their fate
 Some patients use this time to make preparations, deciding how to divide
up their remaining possessions and saying goodbye to old friends and
family members.

GRIEF AND BEREAVEMENT COUNSELLING
 People cope with the loss of a loved one in many ways.
 The way a person grieves depends on the personality of that person
and the relationship with the person who has died.
 How a person copes with grief is affected by the person's cultural and
religious background, coping skills, mental history, support systems, and
the person's social and financial status.
 The terms grief , bereavement , and mourning are often used in place of
each other, but they have different meanings.
 Grief is the normal process of reacting to the loss.

 Grief reactions may be felt in response to physical losses (for example, a
death) or in response to symbolic or social losses (for example, divorce
or loss of a job).
 As a family goes through a cancer illness, many losses are experienced,
and each triggers its own grief reaction.
 Grief may be experienced as a mental, physical, social, or emotional
reaction.
 Mental reactions can include anger, guilt, anxiety , sadness, and despair.
 Physical reactions can include sleeping problems , changes in appetite,
physical problems, or illness.
 Social reactions can include feelings about taking care of others in the
family, seeing family or friends, or returning to work.

 Grief may be described as the presence of physical problems,
constant thoughts of the person who died, guilt, hostility, and a change
in the way one normally acts.
 Bereavement is the period after a loss during which grief is
experienced and mourning occurs.
 The time spent in a period of bereavement depends on how attached
the person was to the person who died, and how much time was spent
anticipating the loss.
 Mourning is the process by which people adapt to a loss.
 Mourning is also influenced by cultural customs, rituals, and society's
rules for coping with loss.

 People who are grieving often feel extremely tired because the process
of grieving usually requires physical and emotional energy.
 Death often reminds people of past losses or separations
 Mourning may be described as having the following 3 phases:
 ● The urge to bring back the person who died.
 ● Disorganization and sadness.
 ● Reorganization.
 Grief is not limited to feelings of sadness .
 It can also involve guilt , yearning, anger , and regret
 Grieving behaviors have a wide range.
 Some people find comfort in sharing their feelings among company.
 Other people may prefer to be alone with their feelings, engaging in
silent activities like exercising or writing.

 The different feelings, thoughts, and behaviors people express during
grief can be categorized into two main styles: instrumental and intuitive.
 Most people display a blend of these two styles of grieving:
 ● Instrumental grieving has a focus primarily on problem-solving tasks.
 This style involves controlling or minimizing emotional expression.
 ● Intuitive grieving is based on a heightened emotional experience.
 This style involves sharing feelings, exploring the lost relationship, and
considering mortality.

 Grief counseling is a form of psychotherapy that aims to help people
cope with the physical, emotional, social, spiritual, and cognitive
responses to loss.
 These experiences are commonly thought to be brought on by a loved
person's death, but may more broadly be understood as shaped by any
significant life-altering loss (e.g., divorce , home foreclosure, or job
loss).
 Grief counselors believe that everyone experiences and expresses grief
in personally unique ways that are shaped by family background,
culture, life experiences, personal values, and intrinsic beliefs.

 They believe that it is common for a person to withdraw from their
friends and family and feel helpless; some might be angry and want
to take action.
 Some may laugh while others experience strong regrets or guilt.
 Tears or the lack of crying can both be seen as appropriate
expressions of grief.
 counselors believe that in all places and cultures, the grieving
person benefits from the support of others.
 Grief counselors believe that where such support is lacking,
counseling may provide an avenue for healthy resolution.

 Grief counselors also believe that where the process of grieving is
interrupted, for example, by the one who is grieving having to
simultaneously deal with practical issues of survival or by their having
to be the strong one who is striving to hold their family together, grief
can remain unresolved and later resurface as an issue for counseling .
 The goals of grief counseling are to aid the individual through
uncomplicated, normal grief to a healthy resolution of the tasks of
grieving within a reasonable amount of time.
 Goals of grief counseling typically include helping the bereaved move
toward acceptance through guiding the individual to talk about the loss,
who the person was to them, and the circumstances surrounding the
death.

 Two very critical constituents of grief counseling include helping the
bereaved to understand their coping behavior and to identify coping
mechanisms that are problematic or unhealthy for the individual.
 Grief counseling becomes necessary when a person is so disabled
by their grief, overwhelmed by a loss to the extent that their normal
coping processes are disabled or shut down.
 Grief counseling facilitates the expression of emotion and thought
about the loss, including sadness, anxiety, anger, loneliness, guilt,
relief, isolation, confusion, or numbness.

 Often people feel disorganized, tired, have trouble
concentrating, sleep poorly and have vivid dreams, and
experience change in appetite. These too are addressed in
counseling.

FIVE STAGES OF GRIEF
 In 1969, Elisabeth Kubler-Ross identified five linear stages of
grief:
 ● Denial
 ● Anger
 ● Bargaining
 ● Depression
 ● Acceptance

 DENIAL
 Denial is a common defense mechanism that buffers the immediate
shock of the loss, numbing us to our emotions.
 We block out the words and hide from the facts.
 We start to believe that life is meaningless, and nothing is of any
value any longer.
 For most people experiencing grief, this stage is a temporary
response that carries us through the first wave of pain.

 ANGER
 The anger may be aimed at inanimate objects, complete strangers,
friends or family.
 Anger may be directed at our dying or deceased loved one.
 Rationally, we know the person is not to be blamed.
 Emotionally, however, we may resent the person for causing us pain
or for leaving us.
 We feel guilty for being angry, and this makes us more angry

 BARGAINGING
 The normal reaction to feelings of helplessness and vulnerability is
reflected through a series of “If only” statements, such as:
 If only we had sought medical attention sooner…
 If only we got a second opinion from another doctor…
 If only we had tried to be a better person toward them…
 This is an attempt to bargain.
 This is a weaker line of defense to protect us from the painful reality.
 Guilt often accompanies bargaining.
 We start to believe there was something we could have done differently
to have helped save our loved one.

 DEPRESSION
 There are two types of depression that are associated with mourning.
 The first one is a reaction to practical implications relating to the loss.
 Sadness and regret predominate this type of depression .
 We worry about the costs and burial.
 The second type of depression is more subtle and, in a sense, perhaps
more private.
 It is our quiet preparation to separate and to bid our loved one farewell.

 ACCEPTANCE
 This phase is marked by withdrawal and calm
 Coping with loss is ultimately a deeply personal and singular
experience — nobody can help you go through it more easily or
understand all the emotions that you’re going through.
 But others can be there for you and help comfort you through this
process.
 The best thing you can do is to allow yourself to feel the grief as it
comes over you.
 Resisting it only will prolong the natural process of healing.

CARING THE TERMINAL ILL

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