Death, Dying, and Grief

This is Unit Seventeen, part two, on choices at life's end, grief and its theories, kinds of loss, and a good death. Part one closed on advance directives. Part two opens with orders about resuscitation and the law on the end of life, then turns to grief. Carry one question through this part: is there a right way to grieve? The most famous answer is five stages, in order. At the entry that weighs that model, the evidence says no: the themes are real, the order is not fixed, and resilience is the most common response to loss. By the end you will be able to tell passive euthanasia, active euthanasia and medical aid in dying apart in law. To tell grief, mourning and bereavement apart. To state what the Yale Bereavement Study found. To name the two orientations of the dual-process model. And to define disenfranchised grief and ambiguous loss.

Six entries on choices at the end of life, and on how law and medicine frame them.

Orders about resuscitation.

HGD 2429 DNR, DNI and DNH

A do-not-resuscitate order means no CPR if the heart or breathing stops; without one, staff must attempt resuscitation. Do-not-intubate orders rule out a breathing tube, and do-not-hospitalize orders avoid unwanted transfers from long-term care. Patients cite avoiding prolonged suffering and not burdening others.

Organ donation.

HGD 2430 Organ Donation

More than a hundred thousand people are on the US transplant waiting list, most needing a kidney, and about a dozen die each day waiting. Many states record donor status on driver's licences; without a recorded decision, families decide, often at a moment of acute grief.

Culture and end-of-life care.

HGD 2431 Cultural Differences in End-of-Life Care

Researchers describe tendencies such as fatalism, seeing life and death as God's will, and family-centred decision-making in some Black, Latine and Asian families, and the Japanese idea of ishin-denshin, unspoken understanding, can lead a family to assume everyone knows a patient's wishes. Mistrust rooted in racist medical history also shapes choices; individuals differ.

Rationing of care.

HGD 2432 Rationing of Care

Rationing of care, limiting resources for patients with little chance of recovery, drew scrutiny during the pandemic, including federal civil-rights review of age- and disability-based rules, as hospitals wrote crisis standards for allocating ventilators. Longer life is not necessarily better life, and the trade-offs of treatment must be conveyed.

Euthanasia and medical aid in dying, in law.

HGD 2433 Euthanasia and Medical Aid in Dying

Euthanasia is ending life to relieve suffering, and the law distinguishes its forms. Passive euthanasia is withdrawing or withholding life-sustaining treatment, such as removing a ventilator or following a DNR order; the underlying disease causes death, and it is legal in every US state. Active euthanasia, administering a lethal agent, is illegal in the United States. Medical aid in dying, also called assisted suicide, is a doctor prescribing medication that the patient intends to take to end life; it is legal in several US states and the District of Columbia, and in Canada and several European countries. The difference between active euthanasia and aid in dying is who administers the medication. The course states legal facts and attributed positions only.

Medical views on aid in dying.

HGD 2434 Medical Views on Aid in Dying

Medical bodies disagree about aid in dying, weighing the principle of doing no harm against the relief of suffering, and religious traditions shape views, with some Christian and Muslim believers regarding euthanasia as contrary to God's will. Views differ by religion and group, and the course takes no position.

Eight entries on theories of grief, beginning with the most famous. The opening question is answered here.

Grief, mourning, and bereavement.

HGD 2435 Grief, Mourning and Bereavement

Grief is the internal, emotional reaction to loss; mourning is its outward expression; bereavement is the fact of having lost someone. A widow may feel hollow inside, wear black for a year, and be legally a widow. Grief is normal, not something to fix, though it can become prolonged and problematic.

Kübler-Ross's five themes.

HGD 2436 Kübler-Ross's Five Themes

Elisabeth Kübler-Ross, interviewing dying hospital patients in nineteen sixty-nine, described five themes: denial, anger, bargaining, depression and acceptance. She described reactions to one's own impending death; the model was later applied to bereavement, and she proposed no timetable.

The payoff: the five-stage model, weighed.

HGD 2437 The Five-Stage Model and Its Evidence

Kübler-Ross's five themes became the most famous account of dying and grief, popular because they are intuitive and filled a gap in clinical care, and Kübler-Ross urged that the dying be allowed to speak openly. But her research was qualitative and not longitudinal, so the order of the themes was never tested. When the Yale Bereavement Study tested them, acceptance was the most frequently endorsed response from the first month, and yearning, not depression, was the dominant negative feeling. That answers this part's question. Themes fits better than stages: people skip and revisit them, and grief spikes on anniversaries. Used as a prescription, the model can make people feel they are grieving badly. Resilience, which this part covers shortly, is the most common response to loss. Its humane core, listening to the dying, survives.

Middle knowledge.

HGD 2438 Middle Knowledge

Middle knowledge, Weisman's term from nineteen seventy-two, is holding denial and acceptance of death at the same time, like a man with terminal cancer planning his funeral while talking about next summer's fishing trip. Such apparent contradiction is normal, and shows why dying and grief resist neat stages.

Meaning reconstruction.

HGD 2439 Meaning Reconstruction

Meaning reconstruction treats grief as a narrative whose goal is meaning and purpose, revising one's worldview much as Piaget described assimilation and accommodation, as a bereaved mother founds a scholarship in her son's name. Rebuilding social networks is part of it too; no grief theory is meant as a prescription.

The dual-process model.

HGD 2440 The Dual-Process Model

Stroebe and Schut's dual-process model describes two orientations in grief. Loss orientation is confronting the emotional loss itself: sharing grief, looking at photographs, feeling the absence. Restoration orientation is managing the changes the death brings: new roles, tasks and relationships. The two are not sequential; the bereaved oscillate between them, like a widower who cries over wedding photographs in the morning and learns to manage the finances in the afternoon. The misconception is that grief moves in one direction. A person stuck in only one orientation may struggle.

Worden's four tasks.

HGD 2441 Worden's Four Tasks of Mourning

Worden identified four tasks of mourning: accepting the loss, working through its pain, adjusting to life without the deceased, and starting a new life while keeping a connection, like a widow who keeps her husband's watch on her nightstand while learning a new routine. All four must be completed, in any order.

Resilience after loss.

HGD 2442 Resilience After Loss

In a prospective study of widowed people, Bonanno and colleagues found resilience, little lasting disruption, the most frequent pattern, and common grief relatively infrequent, like a widower who is sad but keeps working and enjoying friends within weeks. The misconception is that most bereaved people are devastated for years.

Nine entries on kinds of loss, from a child to a pet, and on how grief is marked and felt.

When a child dies.

HGD 2443 When a Child Dies

The death of a child or young adult is especially hard, perhaps because it violates the expected timing of the lifespan, in Neugarten's terms, and parents may hide their grief from each other to protect each other, worsening both. Rituals may be lacking for infant deaths.

Losing a spouse.

HGD 2444 Losing a Spouse

Death of a spouse ranks among the most stressful life events, yet losing a child may be as hard or harder; in one study widowed spouses grew lonelier while bereaved parents did not. Closeness and conflict in the relationship shape grief, and health-care workers' grief often goes unacknowledged.

Sudden death, and anticipatory grief.

HGD 2445 Sudden Death and Anticipatory Grief

Sudden deaths bring more intense grief, while anticipatory grief, grief before an expected death, can make adjustment somewhat easier, as dementia caregivers grieve lost communication before death. After sudden or traumatic deaths, the risk of self-harm and suicide rises, especially in the first year.

Grief in the body.

HGD 2446 Grief's Physical Effects

Grief brings sadness, anger, loneliness and guilt, and physical effects: weaker immunity and a higher risk of heart attack and death, partly through cortisol. In Kenya and Uganda, friends and family arrange the funeral and help with childcare and money, but bereaved people do not always seek or value help; support that fits the person matters.

Prolonged grief disorder.

HGD 2447 Prolonged Grief Disorder

Prolonged grief disorder, added to the DSM-5-TR, is diagnosed in adults when intense yearning or preoccupation persists at least twelve months after a death and disrupts daily functioning; therapy builds coping and meaning. Most people move on from loss; the diagnosis marks grief that is disabling in a way normal grief is not.

Mourning rituals.

HGD 2448 Mourning Rituals

Rituals support survivors or sustain ancestors: in southern Ghana, fantasy coffins commemorate a person's life, the Nawfia of Nigeria hold a second funeral a year later, and Queen Victoria wore black for forty years after Prince Albert's death. Evidence on whether missed rituals leave grief unresolved is inconclusive.

Rituals, and technology.

HGD 2449 Rituals and Technology

The pandemic curtailed funerals, communal meals and religious rites, such as Jewish mourning visits and body-purification rites, and Aboriginal Australians conducted Sorry Business partly on social media, given large kin networks and long journeys. Memorial pages and livestreamed funerals are now common.

Disenfranchised grief.

HGD 2450 Disenfranchised Grief and Pets

Disenfranchised grief, Doka's term, is grief that others do not acknowledge, as can follow the death of a pet, an ex-spouse or a perinatal loss, and more than half of children in pet-owning countries lose a pet before seven. The misconception is that grieving a pet isn't real grief.

Ambiguous loss.

HGD 2451 Ambiguous Loss

Ambiguous loss, Boss's concept, is loss without clarity or closure, inherently open-ended, like a family whose father, living with advanced dementia, is present but no longer the person he was. Instead of closure, the goal is finding meaning despite missing information, and increasing tolerance for ambiguity.

Nine entries to close the unit, on looking back over a life and on what a good death means.

The life review.

HGD 2452 Life Review

The life review, a concept associated with Robert Butler, is a thoughtful examination of one's life, integrating positive and negative memories, as a dying grandfather tells his granddaughter about his proudest moment and his greatest regret. It ties to Erikson's integrity versus despair, and regrets found in review can be resolved.

Legacy, and reminiscence.

HGD 2453 Legacy and Reminiscence

Legacy activities create something that represents one's life, such as a scrapbook or letters, like a mother with terminal illness recording video letters for her children's future birthdays, and reminiscence therapy improves well-being and reduces death anxiety. Families report more meaning.

A successful life.

HGD 2454 A Successful Life

A successful life is a positive view of one's past as a whole, integrating setbacks into a sense of competence, and it is distinct from present life satisfaction: one can be dissatisfied with the present and still judge one's life a success. The Meaning in Life Questionnaire rates statements about purpose on a seven-point scale.

Self-determination at life's end.

HGD 2455 Self-Determination at Life's End

Self-determination theory holds that intrinsic goals support lifelong growth through autonomy, competence and relatedness, and these needs matter at life's end too; a four-culture study found need satisfaction predicted well-being everywhere. Autonomy means freedom to choose, not doing everything unaided.

A good death in the West.

HGD 2456 A Good Death in the West

The modern Western ideal of a good death is peaceful, dignified and pain-free, in old age, at home, with time to prepare but not prolonged; before the twentieth century, death usually came from acute illness, publicly, managed by family and clergy. The ideal is cultural, and many deaths differ from it.

Freedom from pain, and autonomy.

HGD 2457 Freedom From Pain and Autonomy

Freedom from pain is valued almost everywhere, named in eighty-one percent of studies of a good death across patients, families and providers. Autonomy is central in individualistic cultures and less so in collectivistic ones, and preparation, emotional or practical, such as writing a will, is widely valued.

Connection, and respect.

HGD 2458 Connection and Respect

Connection, having loved ones present, marks a good death in many samples, and in Confucian values so does having been a good parent and not a burden; families in India and Uganda value having secured the family financially. Respect after death was compromised during the pandemic.

Children, and spirituality, at life's end.

HGD 2459 Children and Spirituality at Life's End

Adult standards of a good death do not transfer to children: treating the child as a person, clear communication and family time improve the experience. Buddhist traditions treat altruism as lifelong preparation, and atheists and agnostics often see death as the end of existence, which for them makes life meaningful.

A good death across cultures.

HGD 2460 A Good Death Across Cultures

Themes of a good death recur across cultures, freedom from pain, preparation, connection, respect and spirituality, but their weight differs, as one family gathers at a hospital bedside, another honours a wish to die at home, and a third follows religious rites. The misconception is that a good death means the same thing everywhere.

Look at what you can now do. You can tell passive euthanasia, legal everywhere in the United States, from active euthanasia, which is illegal, and medical aid in dying, legal in several states, where the patient takes the medication. You can tell grief, the inner reaction, from mourning, its expression, and bereavement, the fact of loss. You can state the Yale finding: acceptance from the first month, yearning rather than depression, and themes rather than stages. You can name the dual-process orientations, loss and restoration, and say that the bereaved move between them. And you can define disenfranchised grief, unacknowledged by others, and ambiguous loss, without clarity or closure. Unit Eighteen, the capstone, draws the lifespan together.