Holistic Perspective of the Dying Process Physical Spiritual Emotional 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.
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
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 patients 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 deathVictor Frankl, a psychiatrist, wrote of hisexperiences in a Nazi concentration camp: “Man isnot destroyed by suffering; he is destroyed bysuffering 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 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 Childrens 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.