Date: 14/4/2013

1. Psychological Issues at the End of
Life
Dr. Reem Al-Sabah
Dept. of Community Med. & Behavioral
Sciences

2. Needs and Concerns at the End
of Life

3. Holistic Perspective of the Dying Process
Physical
Spiritual
Emotional
Dying
Individual
Psychological Social

4. Physical Needs
 The meaning of the illness
 People try to find a reason for why bad
things happen.
 Patients might blame themselves for their
illness.
 They may feel abandoned by others.

5. Pain
 is the most commonly experienced symptom
of terminally ill patients.
 cause of pain must be known before
appropriate therapeutic methods can be
implemented.
 most common treatment is drug therapy.
 alternative treatments: biofeedback,
hypnosis, relaxation and imagery techniques,
acupuncture…etc.
 pain management must be individualized.

6. Body Image
 is the internal representation of one’s
feelings and attitudes toward one’s body.
 a terminal illness may affect a previous
sense of body image.
 body integrity: the body’s ability to
function normally.
 Dying individuals may face gradual loss
of bodily functions. Caregivers should
deal with the emotions that may result.

7. Emotional Needs
Emotional responses to dying:
 Fears
 Grief
 Positive Emotions

8. Fears
 fearof pain or suffering
 fearof isolation or abandonment
 fearof extinction
 fearof rejection
 fearof the unknown
 fearof indignity
 fearof an inability to fulfill one’s
responsibilities
 uncertainty and fear about the future

9. Loss and grief
 Grief is a natural response to loss.
 Dying individuals grieve over the many
losses that are part of the dying process.
(Loss of: bodily functions, energy,
independence, self-esteem, future dreams).
 They grieve over the impending death and
the end of life.
 Kubler-Ross’s five stages of grief also
apply to the dying person.

10. Positive Emotions
 Emotional growth in the face of
adversity.
 Strengthen emotional bonds with
others.
 Develop insights about the world.
 Give new meaning to life.

11. Social Needs
 Concerns about loved ones
 Patients worry about the physical and
emotional toll of their illness on spouses or
other family members.
 Emotional toll on family members can lead to
depression and stress-related symptoms.
 Caregivers may neglect their own healthcare.

12.  The dying person needs to know that others
still care about them.
 Fear of loneliness/abandonment may be
exacerbated if others:
Fail to disclose the truth about the diagnosis of
a terminal illness.
Refuse to deal openly and honestly with death-
related issues and feelings.
Physically and emotionally withdraw from dying
person.

13. Communication Patterns of dying
persons and those interacting with them (Glaser
&Strauss;1965).
They identifies 4 awareness contexts:
1. Closed awareness: patient does not know
he/she is dying even though medical personnel
and family members know it.
2. Suspected awareness: the patient does not
know but only suspects, with varying degrees
of certainty, that he/she is dying. The medical
staff and family do know the patient is
terminally ill.

14. 3. Mutual pretense. The patient, medical
personnel, and family know the patient is dying
but there is a tacit agreement to act as if this
were not the case.
4. Open awareness. The patient, medical
personnel, and family recognize and openly
acknowledge that the patient is dying.

15. Psychological Needs
 Control and Independence.
 Retaining a sense of control in their lives in crucial to
the dying person’s emotional well-being.
 Dying individuals often prefer to perform tasks for
themselves rather than depend on others for
assistance. fear of increasing dependency on others
 Contribution to others.
 Doubts of value of life and whether they are a burden
to others.
 Activities can enhance a sense of self-worth.
 Review of one’s life.
 Strive to find an answer to the question “Was my life
worthwhile?”

16. Spiritual Needs
 Religion/spirituality becomes magnified as death
approaches (coping and adjusting to illness)
 Most patients derive comfort from their religious
beliefs as they face the end of life.
 Religious concerns can also be a source of pain
and spiritual distress (e.g., feeling punished or
abandoned by God).
 Religion also influences patient's medical decisions,
both about active treatment and end of life care

17. Spiritual Uncertainty
 Religious belief provides people with personal
strength.
 Helps people accommodate to illness, adjust
to disability, feel less depressed, and cope.
 Influence decisions about medical treatments.

18.  Meaning of life and death
Victor Frankl, a psychiatrist, wrote of his
experiences in a Nazi concentration camp: “Man is
not destroyed by suffering; he is destroyed by
suffering without meaning”
 Hope. Reflects a state of mind associated with
positive actions
 Belief system. Caregivers should be aware of
the power of spiritual belief in helping individuals
cope with the process of dying.
 The spiritual needs of the dying are rooted in
their family, religious, and cultural systems.

19.  Spiritual or compassionate care = serving the
whole person—the physical, emotional, social, and
spiritual.
 Rachel Naomi Remen, MD (developed week-long
retreats for people with cancer):
Helping, fixing, and serving represent three
different ways of seeing life. When you help, you
see life as weak. When you fix, you see life as
broken. When you serve, you see life as whole.
Fixing and helping may be the work of the ego,
and service the work of the soul.

20. Palliative Care

21. Palliative Care
 medical specialty focused on improving the
quality of life of patients facing serious illness
and their families.
 The goal of palliative care is pain and
symptom management (e.g., fatigue, nausea,
shortness of breath, and loss of appetite,
depression…etc.).
 All challenges are addressed (physical, emotional,
and spiritual problems).

22.  Palliative care is provided for patients of any age.
 It focuses on the patient and the family as well.
 It is appropriate from the time of diagnosis and
can be provided along with curative treatment.
 It can be provided at any stage of illness (in
conjunction with other therapies that are intended
to prolong life, such as chemotherapy or radiation
therapy).

23.  Palliative care is carried out by a team of
professionals who provide the patient and their
family comprehensive care. This team may
include:
 Palliative care physicians
 Specialists or general practitioners
 Nurses
 Nutritionists
 Nursing assistants or home health aides
 Social workers
 religious counselors
 Physical, occupational, and speech therapists

24. Palliative Care vs. Hospice Care
 Palliative care
can be offered as an early intervention in the
course of an illness along with curative
therapies meant to prolong life.
 Hospice care
 focuses primarily on comfort
 intended to cease all curative treatments.
 appropriate for patients with a terminal illness
and/or a life expectancy of six months or less

25.  Lack of palliative care results in untreated
symptoms that hamper an individual’s
ability to continue his or her activities of
daily life.
 At the community level, lack of palliative
care places an unnecessary burden on
hospital or clinic resources.

26. Palliative Care in Kuwait
 Started in Kuwait in 2005.
 Goal: pain and symptom management.
 So far 80 children have received palliative care at
home and in the hospital.
 Multidisciplinary team: Child life Specialist, nurse,
pain management specialist, psychologist, religious
counselor, physiotherapist, nutritionist.

27. Abdullah Children's Hospice
 A comprehensive, pediatric palliative care facility
that embraces all the needs of children with life-
limiting and life-threatening conditions, their
families and their friends in an attractive, child-
friendly environment enabling them to live their
lives as fully as possible for as long as possible.

28. Bayt Abdullah will offer all families
registered with the hospice:
1) A specialized professional service, free of charge
for all children in Kuwait who meet the criteria for
admission to the hospice, regardless of nationality
or religion.
2) The choice of home, hospice or hospital based
care, or a combination of all three, depending on
their needs.
3) 24 hour support at the end of a telephone or in
the family home.
4) Respect for individual preferences of children and
families in relation to treatment and intervention.

29. Pictures from Bayt Abdullah