Janet Belsky’s Experiencing the Lifespan,

3e

Chapter 15:Death and Dying

Robin Lee, Middle Tennessee State University

Different Death Pathways

Three paths to death: 1.Death occurs without any warning.

Accident Sudden, fatal, age-related event

(heart attack, stroke)2.People decline steadily as they approach death.

Dx with a fatal disease, possibly in the advanced stages

3.People have an erratic course; fatal disease takes years or decades with ups and downs.

Most common dying pattern Typically helped by medical

technology

History of Dying

Death as a natural part of life (eighteenth and nineteenth century) No medicine − People died quickly of infectious diseases. Dying was familiar − It was routine event at every stage of life and a

typical part of the community. Later, due to fears of disease, death became more removed from the

community. Death is vigorously addressed by doctors (early twentieth century)

Modern medicine conquers infectious diseases, moving death to the end of the lifespan.

Dying moved to hospitals, far from view. Result was that dying is a strange, frightening “health-care-managed”

event. Death awareness movement (late 1960s)

Talking about death becomes acceptable. Thanatology (study of death and dying) classes became the rage on

university campuses. Doctors were more willing to talk about cancer.

Cultural Variations

The Hmong – Asian population that migrated to North America after Vietnam War

Believed dying could “unlock the gate of evil spirits” A diagnosis of terminal illness is not discussed. When death becomes imminent, family gathers around

loved one, dressing ill person in traditional burial garment (black robe or suit).

After death, the deceased is washed and groomed, preparing to be viewed.

If death occurs in a hospital, family is allowed the opportunity to mourn person before body is transported to morgue.

Kϋbler-Ross – Stages of Dying

Elizabeth Kϋbler-Ross published best seller On Death and Dying in 1969. The book was based on research she had

conducted by interviewing dying patients about their feelings.

Developed stage theory of dying In her research, Kϋbler-Ross found:

1. Open communication is important. Those who are diagnosed with a terminal illness are often realized to discuss their condition.

2. Dying people pass through five emotional stages.

Kϋbler-Ross’s five emotions regarding death and dying

Denial Person may believe the diagnosis was a mistake. May try to get several “second opinions”

Anger Person may lash out, maybe even at the doctor.

Bargaining Person may plead for more time, often to God. Makes promises to be “good” if death is delayed

Depression Person becomes distraught by the thought of his or her

death. Acceptance

Final stage where the person begins to accept his or her fate.

Problems with Kϋbler-Ross’s theory

While Kϋbler-Ross’s theory helped people reconsider the approach to death and dying, it was seen as rigid and simplistic. Therefore, it may not be accurate for all people.

Problems with theory: Not all terminally ill patients want to discuss their situation.

Do not assume that every terminally ill patient will want to discuss his or her condition.

Person may want to focus on quality of personal relationships as opposed to such a painful issue.

Not every culture feels it is appropriate to openly discuss death. Western culture says knowing is important, but the amount of

information that is shared differs. Not every person passes through distinctive stages adjusting to

death. Feelings may be missed or minimized as “a phase.”

The More Realistic View:

Differing Emotions Dying people experience many emotions (but

not in predictable stages). Some experience a state called middle

knowledge – terminally ill people know they are dying but can not fully grasp it emotionally.

Hope is often the main emotion (I can beat this thing!) until the very end.

This is contradictory to Kϋbler-Ross’s final stage of “acceptance.”

Some are energized and feel more alive, often reevaluating life goals.

The elderly typically report no fear of death, although they are afraid of the pain of dying.

Off-time deaths (such as in youth) are particularly painful for the person and survivors.

Randi Pausch

Death of a child

A child’s death outweighs any other loss. It is more devastating than any other life event.

What can help parents deal with the death? Discussing death with a child can help

parent avoid any regrets. Sharing in the hands-on care during the

final days can be rewarding. Feeling health-care providers are caring

and supportive can help relieve some of the pain.

In search of a “good” death

Guidelines for a good death:1. Minimize physical distress to be free of

possible debilitating pain.2. Maximize psychological security, and

reduce fear and anxiety, thus feeling in control of death.

3. Enhance relationships and be close as possible to loved ones.

4. Foster spirituality and have a sense of integrity and purpose in life.

Checklist to Evaluate Your Dying Goals

Problems with the Health-Care System and Dying

Dying trajectory – how hospital personnel make predictions about what pattern the person’s dying was likely to follow 1. Expected swift death – death is imminent with no

chance of survival2. Expected lingering while dying – advanced stages

of terminal illness with a slow decline3. Entry−re-entry – pattern of admittance to hospital,

stabilization, then discharge until death Problem is that dying schedules can not be predicted. Mistakes made regarding dying trajectory can hasten

death.

Problems with health care and dying

Short-term health care People do not spend weeks or months in the hospital but enter

near death. Thus, relationships are not formed with health-care

professionals who may be less understanding. Disagreements among health-care providers

Physicians have the final decision about treatment. However, nurses may have relationship with patients, but feel

advocating for the dying patient may have consequences. A multicultural society

Raises risk of miscommunication between families of the dying person and hospital staff

Advanced medical technology These technologies allow death to be prolonged even when the

body is shutting down.

Understanding Palliative Care

Palliative Care – any strategy designed not to cure illness but to promote a dignified dying, which includes:

1. Educating health-care professionals on end-of-life care Has become mainstream in medical training

programs One problem is the frequency, partly because they

contradict the medical goal to save lives.2. Palliative care service − specific unit devoted to

providing high-quality end-of-life care Patients can still receive cure-oriented

interventions. Main intervention is “comfort care” Can be cost-effective

The Hospice Movement

Hospice Movement – a movement, which has become wide-spread in recent decades, focused on providing palliative care to dying patients outside of hospitals and especially on giving families the support they need to care for the terminally ill at home. Has the same philosophy as the natural childbirth

movement – like birth, death is a human event Takes it out of the hands of medicine Gained momentum in the early 1970s

Most often today, hospice involves multi-disciplinary teams that come into the person’s home to help family cope.

Barriers to Hospice Care

People are reluctant to give up hope and admit that death is imminent.

May diverge from cultural norms in which belief is not to discuss death.

Person needs an involved family committed to provide the intense care involved with dying at home.

Physicians may also be reluctant to tell families that their loved one is dying.

Most people in hospice enter when death is imminent.

Problems with Dying at Home

Patient: No privacy with intimate needs cared for by

family (bathing, dress, etc.) Can be burdensome to family members

Family: Must be on call 24/7 to provide care May have to give up other responsibilities,

including maintaining work outside the home

Can cause huge financial strain

Making the case for home vs. hospital deaths

Taking control of death

Two strategies for taking control of a person’s ability to achieve a “good death.”

Advance Directives

Euthanasia

Advance Directives

Advance Directives − written document spelling out instructions with regard to life-prolonging treatment if the person becomes irretrievably ill and cannot communicate his or her wishes

Four types:1. Living wills2. Durable power of attorney for health care3. Do Not Resuscitate Orders (DNR)4. Do Not Hospitalize Orders (DNH)

Types of Advance Directives

Living will − spells out a person’s wishes for life-sustaining treatment in case he or she becomes permanently incapacitated and unable to communicate

Durable power of attorney for health care – person designates a specific surrogate to make health-care decisions if he or she becomes incapacitated and unable to make his or her wishes known

Do Not Resuscitate Orders (DNR) – advanced directive completed by surrogates (typically doctors in consultation with the family) for an impaired person, specifying that no efforts will be made to revive him or her in case of cardiac arrest

Do Not Hospitalize Orders (DNH) – advanced directive put into the charts of impaired nursing home residents, specifying that in a medical crisis they should not be transferred to a hospital for emergency care

Euthanasia

Two important distinctions: Passive euthanasia – withdrawing potentially life-saving

interventions (e.g., feeding tubes) These instructions are typically designed in advance

directives, therefore it is acceptable. Active euthanasia – taking action to help the person die

Illegal everywhere but Belgium, the Netherlands, and Luxembourg.

Physician-assisted suicide – a type of active euthanasia in which a physician prescribes a lethal medication to a terminally ill person who wants to die

Issues with Active Euthanasia

Surveys indicate support for “restricted” active euthanasia.

If person is terminally ill and in pain However, there is resistance to making it a legal

practice. Legalizing euthanasia may lead to:

Violating the religious injunction against suicide – belief that only God can give or take a life

Involuntary euthanasia – doctors terminating treatment for people who do not want to die

Person might be pressured into deciding to die by unscrupulous family members.

Person might be seriously depressed, and would not want to die if the depression were treated.

“Slippery Slope” Issues

Daniel Callahan, prominent biomedical ethicist, argues for age-based rationing of care.

Defined as the idea that society should not use expensive life-sustaining technologies on people in their old-old years

Two arguments: After a person has lived out a natural lifespan, medical

care should no longer be oriented to resisting death. The existence of medical technologies capable of

extending the lives of elderly persons who have lived out a natural lifespan creates no presumption that the technologies must be used for that purpose.

• Focus on preventing premature death.