Dr. Reem Al-Sabah

Dept. of Community Med. & Behavioral

Sciences

Psychological Issues at the End of

Life

Needs and Concerns at the End

of Life

Holistic Perspective of the Dying Process

Physical

Emotional

Spiritual

Dying

Individual

Psychological Social

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.

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.

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.

Emotional Needs

Emotional responses to dying:

Fears

Grief

Positive Emotions

Fears fear of pain or suffering

fear of isolation or abandonment

fear of extinction

fear of rejection

fear of the unknown

fear of indignity

fear of an inability to fulfill one’s responsibilities

uncertainty and fear about the future

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.

Positive Emotions

Emotional growth in the face of

adversity.

Strengthen emotional bonds with

others.

Develop insights about the world.

Give new meaning to life.

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.

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.

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.

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.

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?”

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

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.

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.

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.

Palliative Care

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).

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).

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

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

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.

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.

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.

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.

Pictures from Bayt Abdullah