Janet Belsky’s Experiencing the Lifespan, 2e

1. Janet Belsky’s Experiencing the Lifespan, 2e Chapter 15: Death and Dying

2. Different Death Pathways • Three paths to death: • Death occurs without any warning. • Accident • Sudden, fatal, age-related event (heart attack, stroke) • People decline steadily as they approach death. • Dx with a fatal disease, possibly in the advanced stages • People have an erratic course; fatal disease takes years or decades with ups and downs. • Most common dying pattern • Typically helped by medical technology

3. History of Dying • Death as a natural part of life (17th and 18th century) • No medicine - People died quickly of infectious diseases. • Dying was familiar - Routine event at every stage of life and 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 20th 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 become acceptable. • Thanatology (study of death and dying) classes became the rage on university campuses. • Doctors more willing to talk about cancer.

4. Example of how some cultures deal with death and dying • The Hmong – Asian population that migrated to North American 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 morn person before body is transported to morgue.

5. Kϋbler-Ross – Stage theory on death and dying • Elizabeth Kϋbler-Ross published best seller On Death and Dying in 1969. • The book was based on research she had conducted interviewing dying patients about their feelings. • Developed stage theory of dying. • In her research, Kϋbler-Ross found: • Open communication is important. Those who are diagnosed with a terminal illness are often realized to discuss their condition. • Dying people pass through 5 emotional stages.

6. Kϋbler-Ross’s 5 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 their death. • Acceptance • Final stage where the person begins to accept their fate.

7. 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 diagnosis. • Do not assume that every terminally ill patient will want to discuss their condition. • Person may want to focus on quality of personal relationships as opposed to such a painful issue. • Some cultures believe it is more appropriate not to share the terminal illness diagnosis. • Western culture says knowing is important, but the amount of information that is shared differs. • Considering emotions regarding dying based only on “stages” may not be inaccurate. • Feelings may be missed or minimized as “a phase.”

8. Death and Dying: Realistic and different 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.

9. 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.

10. In Search of a “good” death • Guidelines for a good death: • Minimize physical distress to be free of possible debilitating pain. • Maximize psychological security, reduce fear and anxiety, feeling in control of death. • Enhance relationships and be close as possible to loved-ones. • Foster spirituality and have a sense of integrity and purpose in life.

11. Checklist to Evaluate Your Dying Goals

12. Problems with the Health Care System and dying • Dying trajectory – how hospital personnel make projections about the particular pathway to death that a seriously ill patient will take and organize their care accordingly. • Expected swift death – death is imminent with no chance of survival • Expected lingering while dying – advanced stages of terminal illness with a slow decline • Entry-reentry – pattern of admittance to hospital, stabilization, then discharge until death • Problem is that dying schedules can not be predicated. • Mistakes made regarding dying trajectory can hasten death.

13. Health care dilemmas and dying • Conflicts amongst 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.

14. Understanding Palliative Care • Palliative Care – any intervention designed not to cure illness but to promote a dignified dying, which include: • Educating Health care professionals on end of life care • Has become mainstream in medical training programs • One problem is the frequency, partly because they fly against the medical goal to save lives • 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

15. The Hospice Movement • Hospice movement – a movement, which 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 involves multi-disciplinary teams that come into the person’s home to help family cope. • Physician must certify that the person is within 6 months of death to be eligible for services, which may be covered by Medicare. • Tremendous growth, but still only 1 in 4 people who die in the U.S. have been enrolled.

16. Barriers to Using Hospice • 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.

17. 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 maintain work outside the home • Can cause huge financial strain

18. Making the case for home vs. hospital deaths

19. Taking control of death • Advance Directives • Euthanasia

20. Advance Directives • Advance Directives - written document spelling out instructions with regard to life-prolonging treatment if the person becomes irretrievably ill and can not communicate their wishes • 4 types: • Living wills • Durable power of attorney for health care • Do Not Resuscitate Orders (DNR) • Do Not Hospitalize Orders (DNH)

21. Types of Advance Directives • Living will - spells out a person’s wishes for life-sustaining treatment in case they become permanently incapacitated and unable to communicate. • Durable power of attorney for health care – person designates a specific surrogate to make health-care decisions if they become incapacitated and unable to make their wishes known. • Do Not Resuscitate Orders (DNR) – advanced directed completed by surrogates (typically doctors in consultation with the family) for a impaired person, specifying that no efforts will be made to revive them in case of cardiac arrest. • Do Not Hospitalize Orders (DNH) – advanced directed put into the carts of impaired nursing home residents, specifying that in a medical crisis they should not be transferred to a hospital for emergency care.

22. 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.

23. 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 – believe 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.

24. “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