Culture, death, dying and bereavement

The sociology of dying begins with two American researchers, Barney Glaser and Anselm Strauss, who observed hospital wards and published Awareness of Dying in 1965 and Time for Dying in 1968. Instead of asking whether patients should be told, they asked what actually happens between the people in the room, and they named four awareness contexts. In closed awareness the patient does not know he is dying while the staff and often the family do. In suspected awareness he suspects but cannot confirm it. In mutual pretence everyone knows, and everyone acts as though nobody does; the patient, the relatives and the nurses co-operate in a performance maintained to protect one another. In open awareness the dying person and those around him acknowledge the situation and can speak about it. Glaser and Strauss showed that these are not fixed states but a trajectory: awareness moves as the illness advances, as symptoms become unmistakable, as a relative breaks down, or as a nurse answers a direct question honestly. They also showed that the staff organise concealment through small routines — the file kept away from the bed, the conversation in the corridor, the code word for cancer — and that these routines are heavy work, because they require everyone to remember what has been said to whom. The nursing use of the model is practical and does not depend on any one ethics. First, treat awareness as negotiated, not as a fact to be established once. Second, find out who knows what, because a nurse who assumes open awareness may destroy a family’s arrangement in one sentence, and a nurse who assumes closed awareness may leave a patient who is asking to be told alone with his fear. Third, remember that the WHO position on palliative care treats communication as part of the care itself, not as an administrative step before it, and that the approach relieves psychological and spiritual suffering alongside pain. When the family-silence convention is strong, the negotiation is not about whether to lie — no nurse invents a diagnosis — but about pacing and permission: who will be present, what words will be used, what the patient has asked to know, and what may be said if he asks directly. That agreement belongs in the record, because the next shift will otherwise contradict it.

The stage model is used far more often for bereavement than for dying, and it is weakest there. Kübler-Ross based hers on interviews with dying patients, not on a study of the bereaved, yet a generation of carers learned to expect the widow to pass from denial to acceptance in order, and to worry about anyone who did not.

The criticisms are of three kinds. The first is conceptual: the model turns descriptive reactions into prescriptive phases, and it says nothing about the tasks a bereaved person actually has to perform — arranging a funeral, telling the children, finding money, taking over a farm, answering the door. The second is empirical. A much-cited study by Maciejewski and colleagues, published in 2007, followed bereaved people over time and found that yearning and acceptance were the most prominent experiences and that disbelief, anger and depression were comparatively mild and appeared early; the neat sequence did not hold. Research has also shown that most bereaved people function reasonably well and that a minority develop prolonged, disabling grief that needs treatment, which is a question of severity and duration rather than of stage.

The third criticism is cultural: the sequence assumes that the goal of mourning is to accept the death and detach from the dead person. Many communities teach the opposite — that the relationship continues, that the dead remain members of the family who are consulted, fed and named, and that the task of the living is to keep the bond in the right form.

Two frameworks replaced the ladder in clinical teaching. The dual-process model of Margaret Stroebe and Henk Schut, proposed in 1999, describes grieving as an oscillation between loss-oriented coping, in which the person confronts the death and his feelings about it, and restoration-oriented coping, in which he rebuilds daily life, learns new roles and takes distance for a while. Both directions are necessary and the movement between them is the process, not a failure of it. The continuing-bonds approach, developed by Klass, Silverman and Nickman in 1996, argues that maintaining a relationship with the deceased is normal and often helpful rather than a sign of unresolved grief. For nursing this changes the assessment. Instead of asking which stage the person is in, ask whether he is sleeping and eating, whether he can look after the children, whether he has someone to talk to, whether he is safe, and whether the intensity is lasting and disabling. And never pathologise the practice of talking to the dead, keeping a photograph, or pouring a libation: in many traditions that is exactly what a proper mourning requires.

Mourning practices are not decorations around a biological event; they are a technology for moving people from one social state to another, and anthropology has described how they work. Arnold van Gennep, in The Rites of Passage (1909), showed that such ceremonies have three phases: separation, in which the person is detached from his former position; liminality, the in-between period in which ordinary rules are suspended; and reincorporation, in which he re-enters society in a new status. Robert Hertz, writing in 1907 on secondary burial in Indonesia, added the observation that the corpse is treated as dangerous and impure until it has been transferred to the land of the dead, which is why the living must be separated from it for a time. Émile Durkheim made the sociological point in The Elementary Forms of Religious Life (1912): mourning is a duty imposed by the group, not simply a private feeling, and the collective ceremonies restore the solidarity that the death has damaged.

Read these mourning practices through these three ideas and they become legible. Wake-keeping is a liminal vigil: ordinary time is suspended, the body is accompanied, and the death is announced to the whole community. The mourning period is liminality for the survivors: dress, shaved hair, abstention from work, festivals or sexual relations mark them as neither their old selves nor yet ordinary members. Widow rites belong to both the liminal and the reincorporation phase — seclusion, washing and head-shaving separate her from the dead husband, and the closing ceremony releases her to marry again. Cleansing of the house, the sweeping out of the death and the washing of the body belong to the same logic of removing dangerous contact. Burial societies are the modern, monetary form of the same solidarity: they collect contributions, buy the coffin, transport the corpse and feed the guests, so that the group, not the isolated household, carries the cost.

Two warnings follow for nursing. The first is that the same rite can heal or harm. Support and reintegration are not the whole story; widow inheritance, forced sexual cleansing, the seizure of a widow’s property and obligations that keep a sick person from treatment are real harms, and the nurse names the harm without treating the whole tradition as worthless — the test is whether the practice protects or destroys health. The second warning is against stereotyping. These practices vary by ethnic group, region, church, generation and town or village, and they also vary with the kind of death: a death in old age after a full life is usually honoured with a large funeral, while a suicide, a maternal death or the death of a young person may be considered a bad death and handled quietly, sometimes without a wake at all. A family’s name predicts none of this. Ask what they must do, who must do it, and by when — and then make the ward fit that answer as far as safety allows.

WHO frames palliative care as an approach that improves the quality of life of patients and families facing life-threatening illness, by preventing and relieving suffering through early identification and correct assessment of pain and of physical, psychosocial and spiritual problems; it explicitly includes bereavement support and makes no distinction between the care given before death and the care owed afterwards. The scale of the need is the argument for taking it seriously in every setting: an estimated 56.8 million people need palliative care each year and only about 14 per cent receive it, most of them in low- and middle-income countries, where almost half of the children needing it live in Africa; around 80 per cent of patients with cancer or AIDS and about 67 per cent of those with cardiovascular or chronic respiratory disease experience moderate to severe pain at the end of life; and restricted access to morphine is one reason.

World Health Assembly resolution WHA67.19 in 2014 asked member states to treat palliative care as a core component of health systems, with emphasis on primary and community care.

Last offices are where that promise is tested on the body in front of you. The clinical sequence is short and must be exact: confirm and time the death, inform the doctor so that certification and the death certificate can proceed, and record it. Then, before touching the body, ask the family what their obligations require. In many traditions specific relatives must wash and prepare the body, prayer must precede any handling, the body must be laid in a particular orientation, or certain people — a widow, a pregnant woman, a child — must not see or touch it. Some families will want to carry out the washing and dressing themselves and need only privacy, water and time. Where the nurse performs last offices, the standard of dignity is the same as for a living patient: close the eyes and mouth, lay the body flat with the arms at the sides, remove intravenous lines, catheters, drains and nasogastric tubes, clean and dress wounds, replace soiled linen, and cover the body with a shroud so that no one sees it uncovered except those who must. Apply the identification band or label and check it aloud, and whenever possible in the presence of a second person. Return jewellery, clothing and money to the family against a written record, and note who received them.

Give the family unhurried time with the body before it goes to the mortuary, and tell them what will happen next, in order and in plain words. Two further duties are easily forgotten. The first is legal and cannot be delegated to the family: any death that is sudden, violent, unexplained, or occurred within the statutory period after admission may require notification to the police or the district officer before the body is moved, and the nurse must know the local rule. The second is the nurse’s own grief. Repeated deaths in a busy ward accumulate, and a short structured debrief — what happened, what was difficult, who needs support — protects both the nurse and the next patient. Children in the family should not be lied to: they are usually told something, and the something they are told is usually worse than the truth spoken simply.