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Death and dying in America

(11-28-16)

Definitions and ethical issues

  • Death turns out to be difficult to precisely define or identify (much like the concept of “life“). Different cultures tend to have different meanings for it.
  • the developmental psychologist Berk (2010, p. 642) suggests that an understanding of death is based on 5 ideas:
    • 1. Permanence. Once a living thing dies, it cannot be brought back to life.
    • 2. Inevitability. All living things eventually die.
    • 3. Cessation. All living functions, including thought, feelings, movement, and bodily processes, cease at death.
    • 4. Applicability. Death applies only to living things.
    • 5. Causation. Death is caused by a breakdown of bodily functioning.
  • These ideas probably apply well to complex forms of life (such as human beings), but may not work as well with other forms of life (such as viruses, if we consider a virus to be alive)
    • [viruses and other infectious life forms contain nucleic acids (either RNA, DNA, or both); prions, misfolded proteins, do not are and are not not usually considered to be a living organism. Prions are the cause of bovine spongiform encephalopathy (“mad cow disease”) in cattle; in humans, prions cause Creutzfeldt-Jakob Disease, Kuru, and other rare degenerative neurological diseases.]
  • Legal and medical definitions
    • for many centuries we accepted and applied the criteria that now define clinical death: the absence of a heartbeat and respiration
    • most hospitals today define death in terms of whole-brain death: lack of brain activity in both the brainstem and in the cortex
      • “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all function of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards” (Uniform Determination of Death Act, p. 3; approved by the American Medical Association October 19, 1980; approved by the American Bar Association February 10, 1981)
      • a person’s cortical functions can cease while brainstem activity continues; this is referred to as a persistent vegetative state
      • recovery from a persistent vegetative state is unlikely/very unusual/(possibly) never
      • this state allows for spontaneous heartbeat and respiration, but not for consciousness
        • rare cases where individuals have recovered from prolonged coma and reported having memories of conversations made in their presence during the coma have sometimes raised speculation of some level of sensory processing during deep coma and persistent vegetative states but these accounts, like “near death experiences” may be “truthful but not true” (the person is honestly reporting their subjective experience but this account is not veridical–it does not actually correspond to events)
      • The whole-brain standard does not permit a declaration of death for someone who in in a persistent vegetative state
    • in all 50 U.S. states and the District of Columbia, the whole-brain standard is used to define death
    • Some philosophers and scientists have argued that the whole-brain standard is not consistent with our current understanding of brain functioning, especially the importance of the cortex in making us “human” as opposed to the role of the brain stem in maintaining basic “animal functioning.”
      • Advocates for this view argue for the use of a higher-brain standard, according to this view death would reflect the irreversible cessation of the capacity for consciousness
      • a patient in a permanent coma or persistent vegetative state would meet the criteria of death under such a higher-brain standard, but not under the current whole-brain standard of death
  • Bioethics is the study of the interface between human values and the challenges raised by technological and medical advances in the health and life sciences
    • it reflects two issues:
      • respect for individual freedom
      • the impossibility of establishing any single version of morality by rational argument or common sense
    • in the area of death and dying, one of the most challenging bioethical issue is euthanasia: the practice of ending life for reasons of mercy
    • two types of euthanasia are sometimes distinguished:
      • passive euthanasia means ending someone’s life by withholding some type of intervention or treatment, such as stopping nutrition
        • following a “do not resuscitate” (DNR) order could be viewed as passive euthanasia
      • active euthanasia means deliberately ending someone’s life based on the patient’s wishes by making some deliberate action, such as turning off a life-support system
        • physician assisted suicide refers to a doctor helping a patient end their own life, for instance by arranging for the patient to be able to self-administer a lethal combination of meditations
        • physician assisted suicide in not legal in the majority of states; currently Oregon and Washington have physician assisted suicide statutes and Montana has physician assisted suicide via a court ruling
        • physician initiated euthanasia would refer to a doctor(s) or other professional making an independent decision to end someone’s life without their active consent. This is not legal in any state and would be considered murder in all U.S. states, districts, and territories.
          • “put the pill in your hand, not in your mouth” (unknown source, NPR discussion)
      • These are very difficult issues for all of us to consider; and raise complex legal, political, and moral questions. It is typically recommend that we make our views and wishes on these matters known to our family and health care providers
        • an advance directive or living will provides a document attesting to a person’s wishes about life support and other end-of-life care and treatments
        • a durable power of attorney for health care is a document appointing someone to act as a person’s agent (should they become incapacitated)
          • either a living will or a durable power of attorney for health care could be the basis for a “do not resuscitate” medical order
          • a DNR applies only to cardiopulmonary resuscitation, should one’s heart and breathing stop
          • with a DNR order, a medical team would not try to restore heartbeat and respiration
          • in the absence of a DNR order, a medical team would be compelled (by the ethical standards of most health care professions and by legal statutes; as well as possible legal liabilities should they not) in most circumstances to try and restore heartbeat and respiration

Thinking about dying

  • there are developmental trends in how we consider the end of life:
    • in young-adulthood, the shift from formal operational thinking to postformal thinking is important in how young adults think about death
    • in mid-life many adults are confronted by the death of their parents and have a growing realization of their own mortality
      • middle-aged adults tend to show the highest level of death anxiety
        • some level of death anxiety is typical but should not interfere with normal daily routines
        • some authors (Cavanaugh for instance) have suggested that death anxiety has beneficial aspects:
          • being afraid to die could lead us to go to great lengths to stay alive (which could be positive if we choose appropriate, health promoting actions and didn’t ruminate too much)
          • being afraid to die could serve as a motivation to have children (which could be positive if we raised them well)
    • older adults tend to be less anxious about death than other age groups of adults
      • lower ego integrity, more physical problems, and more psychological problems are associated with higher levels of death anxiety in older adults
      • men tend to show greater fear of the unknown than women; women report more specific fear of the dying process
      • few differences in death anxiety have been reported among different ethnic groups
    • Learning to deal with death anxiety
      • Even if death anxiety has some value, if it becomes too powerful it will interfere with living our life; several authors suggest ways to manage our fear of death and dying, these tend to take one of two forms:
      • Living your life to the fullest
        • I went sky divin’,
          I went rocky mountain climbin’,
          I went 2.7 seconds on a bull name Fumanchu.
          And I loved deeper,
          And I spoke sweeter,
          And I gave forgiveness I’ve been denying,
          And he said someday I hope you get the chance,
          To live like you were dyin’.
          Tim McGraw “Live Like You Were Dying”
      • Death education (avoidance, our usual way of coping with death, tends not to work so well)
        • factual information and discussion of different views on death
        • self-exploration: writing your own obituary; “What circumstances would help make my death acceptable?”, “Is death the sort of thing that could happen to me right now?”
        • experiential workshops about death tend to significantly lower measured death anxiety in younger, middle-aged, and older adults (Abengozar, Bueno, & Vega, 1999)
  • one of the more well know theories of death and dying was that of Elizabeth Kubler-Ross, based on her clinical studies of terminally ill individuals
    • she proposed that we face our own impending demise by going through five stages: denial, anger, bargaining, depression, and acceptance
    • research has suggested that life is often not as simple as stage models would suggest: people exhibit more than one response to the prospect of death at a time, do not necessarily go through all of them, and do not necessarily go through them in the order suggested by Kubler-Ross’ theory
  • some theorists argue that a single strategy, such as acceptance, is not best for every dying person
    • an appropriate death “is one that makes sense in terms of the individual’s pattern of living and values and, at the same time, preserves or restores significant relationships and is as free of suffering as possible” (Beck, 2010, p. 648)
    • surveys of patients about a “good death” tend to yield fairly consistent responses in what would ideally occur (Goldsteen et al., 2006; Kleespies, 2004; Proulx & Jacelon, 2004):
      • maintaining a sense of identity or continuity with one’s past
      • clarifying the meaning of one’s life and death
      • maintaining and enhancing relationships
      • achieving a sense of control over the time that remains
      • confronting and preparing for death

Bereavement

  • Bereavement is the experience of losing a loved on, grief is the emotional and psychological response that often accompanies bereavement
    • our initial response is often one of “shock”, “numbness”, and disbelief
    • intense, shifting, and unsettling emotional responses may follow these initial reactions: sadness, anxiety, loneliness, anger, guilt, helplessness
    • there may be symptoms resembling clinical depression: lethargy, confusion, disorganization, sleep disturbance, lack of energy, anhedonia, decreased appetite
    • there is great variation in grieving across individuals within a culture and between cultures
      • The more intense our attachment had been to the person who has died, the more intense our grief is likely to be (Bonanno, 2004)
      • deaths of parents, children, and spouses tend to lead to the most intense grief
        • grief usually subsides over time but feeling of loss and yearning may never entirely disappear (Worden, 2009); Levin suggests that we do not so much recover from a loss as learn to live with it (2004)
        • we may maintain a persistent sense of the deceased person’s presence; widow and widowers may continue to “talk” to their deceased spouse for years after their death (Carnelly et al, 2006; Stroebe & Stroebe, 1991)
        • among older adults, there is a significantly increased risk of a number of psychological problems (almost 10 times above the rates observed in their married peers) among those newly bereaved (Hooyman & Kiyak, 2011)
        • in the first year following the death of a spouse, the risk of mortality for the bereaved person is 7 times higher than married peers (Subramanian et al., 2008)
      • over 80% of wives outlive their husbands (both because men tend to be older than women when they marry and women tend to live long than men)
        • widows often struggle financially after their husbands die; and are less likely to remarry (if widowed late in life)
          • but they often show impressive resilience and focus on relations with children and friends
        • widowers are more likely to experience physical and mental health problems, and slower to re-establish emotional equilibrium
          • they are much more likely to remarry (in part due to the availability of many potential partners but possibly also due to a greater need for a partner in meeting the challenges of life [Ajrouch et al., 2005])
      • how we die can greatly affect the reactions in our survivors
        • a sudden and especially unexpected death tend to be associated with more intense grief, possibly due to the impact on our beliefs that the world is a safe, just, stable (and predictable) place to be in
        • a death that is expected (after a long illness or when the person is very old) allows for preparation among survivors through anticipatory grief
      • grief is both universal and highly individual, there is no one “best way” to grieve; human cultures have developed mourning rituals to help us deal the the complexity and challenge of loss, to make it more comprehensive and bearable
    • Mourning rituals and afterlife beliefs
      • The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror. But if you do, it is not. (Gawande, 2014, p. 232)
      • human beings, as far as we know, are the only creatures on earth (currently*) that contemplate their own end
        • burial and cremation rituals have been observed in all human cultures
        • * there is some evidence that Neanderthals also had burial rituals
      • human beings in every culture have developed mourning rituals in response to help survivors cope with the loss of group members
        • mourning rituals and mourning periods vary greatly among the religions and cultures of the world
        • cultures also vary in how they remember and honor the dead
          • traditional practices in China were referred to as “ancestor worship” in western nations, but concepts like “respect”, “honor”, (and “obedience”) may be closer to an understanding of the role deceased ancestors played in the lives of many Chinese adults
            • during the Ghost Month the souls of the dead are believed to visit the living as the gates of the underworld are opened and spirits are free to roam the earth; the high point of the month is the Hungry Ghost Festival: families prepare a meal, place dishes on an offering table, at the end of the festival paper lanterns are floated in small boats on water to guide the spirits back to the underworld
          • in Jewish traditions the custom of Yahrzeit commemorates the anniversary of the death of parents, siblings, spouses, or children; a special Yahrzeit candle is lit and burned 24 hours, the Kaddish prayer recited at funerals is recited three times (evening of the previous day, morning, and afternoon), and synagogue may be attended
          • in Ireland the Christian tradition of remembering and honoring the dead during a three day period beginning on the last night in October evolved into All Hallows’ Eve (hallows referred to spirits) which became our Halloween, November 1st, the day after Halloween, became All Saints’ Day, dedicated to remembering the lives of saints and martyrs.
          • in Mexico the observance of All Souls’ Day is known as Dia de los Muertos, the Day of the Dead, a time of remembrance and celebration
          • Muslim traditions encourage visits to the graves of loved one, to show respect and consider the afterlife to come; prayers are offered at home before going to the cemetery, shoes are taken off before entering the graveyard, and prayers are recited at the grave.
        • typical reactions to the loss of a loved one include sorrow, sadness, disbelief, guilt, and anniversary reactions (sadness and changes in behavior approaching or on the date of the death)
        • prolonged grief reactions (“pathological grieving”) are seen as difficulty or failure to “grieve well” and begin to rebuild you life
          • identification of “traumatic grief” is complicated by cultural variation in the process of grief
          • two manifestations of prolonged grief are excessive guilt and self-blame
          • marked functional impairment is another aspect of prolonged grief reactions: one “purpose” of grief may be to allow the survivors continue to live
      • we are also, at least since the Neolithic period 40,000 years ago, the only species that have considered the possibility that death is not the end of us–that there is some indefinable essence of ourselves, a soul, a spirit; that continues after our body perishes
        • Arnett (2012) points out that, while there have been tremendous changes in how people live over the past several thousand years, explanations of death have been remarkably enduring and stable: that early Egyptian and Greek beliefs about death, developed thousands of years ago, are still evident in several major religions. Many of the beliefs of major religions today date from around 3,500 to 2,000 years ago; Islam, the most recent major religion, is about 1,500 years old. Afterlife beliefs are part of all major religious traditions, with a number of interesting similarities: a soul, that endures, who’s subsequent experience is influence by conduct during life
      • the International Social Survey Program has surveyed people in 32 countries around the world several times during the past two decades about a variety of topics, including afterlife beliefs. There are wide differences in how different nations view the prospect of life after death: “Do you belief in life after death?”. Only three of the 32 nations had a majority of adults responding “definitely yes”: Philippines, USA, and Chile; “definitely no” responses were highest in (former) East Germany, Bulgaria, and Hungary (ISSP, 1998)
      • In the 2008 Pew Research Center survey, 74% of U.S. adults sampled responded “Yes” to the question: “Do you believe in life after death?”; 18% responded “No”, 2% gave other responses, 7% said they did not know or declined to answer the question
        • beliefs in an “afterlife” can take a variety of forms:
          • survival of individual consciousness: ghosts; Christian, Islamic, and Norse ideas of heaven (or hell); etc.
          • reincarnation: Hindu, some Buddhist thinkers, some Wicca and spiritualists; ect.
          • merger of the individual with a “cosmic” or “universal” consciousness: some Buddhist thinkers, some Gnostic traditions; etc.
          • some idea that there is not an “end” without any clue as to how this manifests
        • some investigators (for instance, Sam Parnia, M.D.) take very seriously the reports of individual who have had “near death experiences” or been clinically dead for a period and then been revived
        • Some of these ideas may seem silly to us, some may seem to be wishful thinking motivated by anxiety, some may represent our own personal belief; your instructor believes that: 1) no one really “knows” what happens to us when we die, 2) no one is able to convinence all the rest of us what the right belief is, and 3) we will all get to find out the right answer (in one sense or another) eventually.

What is life?

“NASA, which is heavily invested in looking for life outisde of Earth, adopted a working definition of a living organism: a self-sustaining chemical system capable of Darwinian evolution.” (Joyce, 1995, cited in Carroll, 2016, p. 238)

Schrodinger put forth a different definition, emphasizing the “self-sustaining” part of NASA definition:

“When is a piece of matter said to be alive? When it goes on ‘doing something,’ exchanging material with its environment, and so forth, and that for a much longer period of time than we would expect an inanimate piece of matter to ‘keep going’ under similar circumstances.” (Schrodinger, 1944, cited in Carroll, 2016, p. 239)

Whole Brain Death

the President’s Commission for the Ethical Study of problems in Medicine and Biomedical and Behavioral Research in 1981 established several criteria for the determination of “whole brain death”; these are still used today:

  • No spontaneous movement in response to any stimuli
  • No spontaneous respirations for at least one hour
  • Total lack of responsiveness to even the most painful stimuli
  • No eye movements, blinking, or pupil responses
  • No postural activity, swallowing, yawning, or vocalizing
  • No motor reflexes
  • A flat electroencephalogram (EEG) for at least 10 minutes
  • No change in any of these criteria when they are tested again 24 hours later

For a person to be declared dead, all eight criteria must be met.

Other conditions which might mimic death (deep coma, hypothermia, drug overdose) must be ruled out.

Lack of brain activity must be seen in both the brainstem (controls vegaetative functions such as heartbeat and respiration) and in the cortex (controls higher functions such as thinking)

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