Care of the dying, death and the last office

Kübler-Ross was a Swiss-American psychiatrist who interviewed dying patients at the University of Chicago and found that her own medical education had left her unprepared for their emotional needs. The 1969 book that came out of that work is titled On Death and Dying, not Of Death and Dying as the lecture notes have it. The title matters because the book argued about how to be present with the dying; it was not a textbook about the biology of death. Two features of the method explain what the five stages can and cannot do. First, they came from interviews and clinical observation rather than from a controlled trial or a validated instrument, so they describe a recurring pattern and do not predict what any individual patient will feel. Second, they were first written about the person who is dying, reacting to his or her own diagnosis, and were only later transferred to bereaved relatives, which is where much of the confusion about stages of grief comes from. The nursing consequence is that the stages serve to recognise and normalise, never to schedule. The usual mistake is to treat acceptance as the goal and anger as a failure of coping, so a patient who shouts is described in the handover as difficult and a family is told that their mother is still in denial. Both labels close the conversation the nurse is supposed to open. Another mistake is to decide in advance that a patient has reached acceptance and to discuss the plan and the preferences only with the family. Denial needs a clear message delivered once, and then time, not repeated reminders of bad news. Anger is directed at whoever is nearest — the nurse, God, the relatives — and the notes are explicit that it should be tolerated rather than suppressed, while any warranted criticism inside it is still acted on. The Death Attitude Profile developed by Gesser, Wong and Reker in 1987–88 and refined by Wong, Reker and Gesser in 1994 divides acceptance itself into three types. Neutral acceptance faces death rationally as the inevitable end of every life. Approach acceptance sees death as a gateway to a better afterlife; whether a particular patient holds it is something the nurse asks, not assumes. Escape acceptance chooses death as a better alternative to a painful existence. The third type demands a nurse’s full attention, because a patient who says that he wants it to be over may be describing uncontrolled pain, untreated depression or intolerable symptoms rather than a settled wish to die; separating escape acceptance from a treatable crisis is a clinical duty, and it is also what separates a request for comfort from a request for euthanasia.

Cheyne–Stokes respiration — the notes write Cheyne stroke — takes its name from John Cheyne, who described the pattern in 1818, and William Stokes, who published it in 1854. The pattern is a crescendo–decrescendo oscillation: the breaths gradually deepen and quicken, then gradually become shallower, and the cycle ends in an apnoeic pause that may last a minute or more; it is driven by an unstable feedback loop in the brainstem. The notes’ shorthand, “periods of rapid, shallow breathing”, is loose and inaccurate, and it is the description that must be corrected, not only the spelling. Carbon dioxide is the main stimulus to breathe: as it accumulates, ventilation increases; if ventilation overshoots, carbon dioxide falls below the level needed to sustain breathing and the patient pauses; carbon dioxide then rises again and the cycle repeats. In the dying patient the loop is unstable because the respiratory centres are depressed and the circulation is slow, not because the patient is struggling for air in the way a healthy person would. Relatives watching these pauses can be badly frightened, and the honest explanation — that the rhythm is irregular, that apnoeic pauses are expected, and that distress will be treated if it appears — is part of nursing care. The noisy breathing that many families fear is a different mechanism. Mucus is produced normally in the airways and is normally cleared by coughing; a dying patient is often too weak to cough and no longer changes position, so secretions pool in the throat and rattle with each breath. The patient is usually not drowning and often is not distressed, although the sound is. Repositioning onto the side, mouth care and, where prescribed, medication that dries secretions reduce it; families should be told what the sound is rather than left to imagine it. Three further mechanisms shape the last days. First, the dying body cannot digest food properly, so appetite falls, and the notes are right that relatives do not need to make the patient eat: forcing food or large volumes of fluid can cause aspiration, nausea and swelling rather than strength. Small sips, ice chips and wetting the lips maintain comfort without pretending to nourish. Second, confusion and hallucinations can come from the chemical changes of dying, but they can also come from treatable causes — uncontrolled pain, low oxygen, infection, constipation, a full bladder or accumulated drugs — and these must be excluded before distress is sedated, because several of them are reversible. Third, cold hands and feet come from the circulation withdrawing towards the vital organs. On lighter skin a bluish tinge is easy to see; on darker skin it is easier to see on the lips, nose, cheeks, ears, tongue and inside the mouth. Falling urine output and mottling of the knees and feet belong to the same final-days picture, and together with these signs they let the nurse say honestly that death is likely within hours or days rather than promising a recovery.

The last office looks like a list of small tasks, and each item exists because of a specific failure it prevents. Begin with identity. The notes require four tags, and the reason is that a body passes through many hands — ward, porters, mortuary, sometimes a funeral parlour — so a single identifier can be lost, covered by a shroud or removed. The ankle bracelet carries the patient’s name, date of birth, date and time of death, the name of the ward if the patient died in hospital, and the patient identification number; a duplicate label with the same information is pinned to the shroud or wrap. A wrist band is a poor choice because the arms are positioned at the sides and then wrapped, whereas the ankle stays accessible while the stretcher draw sheet is used to slide the body onto the trolley. Two rules about the record carry more weight than the physical care. First, the time of death recorded is the time the nurse observed it, not a time estimated afterwards to fit the shift; the death certificate is a legal document, and writing a time you did not witness turns a clerical error into a falsification. Second, jewellery is removed unless the family asks for it to stay, and anything left on the body is written on the patient’s property list. That entry protects the family, who would otherwise wonder in the following weeks where a ring went, and it protects the nurse, who now has a written answer. Infection risk is checked before the body is touched, because death does not cancel an infection. Wounds, including pressure sores, are covered with a waterproof dressing, and the points where tubes entered are padded with gauze so that drainage does not soil the shroud; the zip-lock bag or shroud kit or sheet, the gallipot of cotton and the receiver for urine on the trolley exist for that purpose. The bladder is emptied by pressure on the lower abdomen before the body is wrapped, so that leakage does not happen later, in a corridor or in the mortuary. Positioning is done early for a mechanical reason: within a few hours rigidity fixes the muscles, and a body laid out with the legs bent or one arm across the chest cannot easily be corrected afterwards. That is why the notes ask for the body to be laid flat on its back, legs straightened, arms at the sides with palms down and fingers straight, one pillow under the head and a rolled towel under the chin if the jaw needs support. The eyes are closed with thirty seconds of light pressure on the eyelids, or with cotton if that fails, because a family will remember an open-eyed body for years; dentures stay in place unless inappropriate, so that the face keeps the shape the family knows. Finally, the notes record that trolleys may be disguised to resemble laundry carts when the route passes through public areas. The disguise protects other patients and visitors from a distressing sight, but it removes none of the obligations attached to the body: the tags, the property list and the covering stay in place, and the mortuary still receives an identified person. The usual mistakes are all failures of this paper trail rather than of washing — a time of death written from memory, jewellery removed without an entry, dentures taken out, a label left in a pocket, or a body sent to the morgue without the property list. Each of those turns a dignified procedure into an avoidable harm for a family that is already grieving.