Janet Belsky

1
Janet Belskys 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
K?bler-Ross Stage theory on death and dying

• Elizabeth K?bler-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, K?bler-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
K?bler-Rosss 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 K?bler-Rosss theory

• While K?bler-Rosss 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 K?bler-Rosss 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 childs 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 persons 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 persons 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