Sharing control in death: the role of an “amicus mortis”

EDITOR—May I offer one further ingredient to a good death as discussed by Smith in his editorial1 —having an “amicus mortis,” a friend at death. Most items on his list of principles use the word control or imply it, yet the very process of death entails losing control. Control of strong drugs is especially difficult for the one who is dying. An amicus mortis makes it easy. I wrote the following within days of my wife's death from cancer four years ago, and it was read at her funeral.

“Towards the end I was given the privilege of care. I don't want to belittle the role of the care team. None the less, I was the lucky one in charge, especially at night, and my task was an easy one, aided by small doses of morphine towards the end.

“She had no pain, no distress, no loss of dignity, no catheters, none of the things my patients in hospital have to put up with. In the last week our nightly family parties had to be in her room. Her last hours were tranquil.”

The role of amicus mortis is life enhancing, and there should thus be no shortage of supply. I had a further small dose of being an amicus mortis at the end of last year when my father died. My older brother, enviably in full retirement, played the main part. He closed down his home in the Carolinas for a couple of months for the purpose. He endorses this view.

The chosen person must have time and love and prescribing power. Perhaps it is an unfair advantage to have a doctor-husband or doctor-sons available, but prescribing power can easily be delegated, and the other attributes are just as important.

I fully agree with Smith that there is nothing macabre or morbid about thinking of death and planning your funeral throughout life, but I suggest that it is equally important to choose and cultivate your amicus mortis—and see to it that he (or she) doesn't die first.

Research on dying is scanty

EDITOR—It is true that no one can fully answer Smith's question about the state of dying in Britain.1 The current fashion for evaluative studies of health service outcomes and the low priority given by grant bodies to descriptive research (generally discarded as needs assessment) have led to an emphasis instead on the costs and outcomes of treatments for the living. Admittedly, surveys of terminal care and bereavement have been conducted.2 3 But these, by the very nature of survey design, can only tap the surface. Neither has the more detailed body of research carried out on selected groups of patients (including those in hospices) led to the wider profession or the public being fully informed about death.

Smith's principles of a good death are timely and greatly welcomed.1 While information about dying should be more widely available, and regarded as less taboo, an informed profession is also required to act in the best interests of patients: to provide them with preparatory information to demand and initiate timely and appropriate help. When people are fortunate enough to have access to a hospice or a good palliative care team they may be given adequate support, information, and preparation. But such services are patchily provided throughout Britain, which is perhaps inevitable when the NHS largely relies on charity to provide them.

Death's embrace: Death and a Woman by Hans Baldung Grien from the exhibition “Grunewald and his contemporaries: paintings from the Kunstmuseum, Basel” in the National Gallery, London, until 21 May 2000

This is not a value free commentary. I speak as one who recently cared, alone, for my 79 year old father, who died at home from stomach cancer in a rural part of England. The individual health professionals involved (general practitioner and district nurse) were caring, kind people, doing their best within an extremely limited system. The only specialised professional was a Macmillan nurse based at the hospital whose role was to advise the very busy district nurses on aspects of their workload relating to terminal care; no help or support was given by Marie Curie nurses because they were “scarce.” The outcome was lack of preparation for the distressing final stages, and great difficulty contacting doctors and nurses out of hours at times of need. This, in turn, resulted in totally inadequate pain relief and lack of help with incontinence and distress in the final 24 hours.

This is just one example of what can happen in the face of a patchy infrastructure for terminal care in this country—but it is one example too many.

Quality of death can be measured outside hospices

EDITOR—Henry Fielding said: “It hath often be said that it is not death, but dying which is terrible,” though striving for a good quality of death for patients1 should not prevent us saving life and treating disease.

Most scientific work on death applies to death from cancer in hospices, which is greatly different from the experience of death in geriatric wards—for example, in the number of unexpected deaths. We audited the quality of expected deaths in acute inpatient geriatric practice by measuring whether five standards were attained:

• Patients should be free from symptoms (pain, anxiety, dyspnoea, pressure sores)

• Death should occur in familiar surroundings—that is, the patient should not be moved within three days of death

• Relatives should be aware that the patient is dying and be present if desired

• Necropsy should be requested if cause of death is unclear

• The patient's general practitioner should be informed of the death (by telephone within 24 hours) and diagnosis (by discharge summary within seven days).

The table shows the results. We identified issues around the time of death related to symptom control and communication with general practitioners that needed attention within our department.

Standards of quality of death are universally applicable, though the different emphasis between, say, medical and hospice practice needs to be recognised. We believe that development of these standards will allow us to measure quality of death in medical and geriatric practice.

Principles of palliative care are yet to be applied in acute hospitals

EDITOR—Smith states in his editorial, “There is a suspicion that for the majority who die in acute hospitals or nursing homes the experience is bad.”1 Similar stories abound in Australia even with its well developed palliative care services. However, palliative care is accessible to only some terminally ill patients and usually those dying of cancer. The “good dying” in hospitals still eludes most in Western countries, as indicated by a recent bequest in Toronto, Canada.2

Research commissioned by the South Australian parliament in 1991 found that the majority of respondents considered public hospitals to be unsatisfactory in providing care for terminally ill patients.3 They felt excluded from medical decision-making and had problems in communicating with hospital specialists. This and other anecdotal evidence prompted a group of researchers in South Australia to investigate the care of terminally ill patients in acute hospitals.

Two studies have now been completed observing the care of terminally ill patients during their last six days of life in medical wards in two acute hospitals.4 5 The findings indicate that there are barriers to the care when patients are dying, including the strict adherence to hospital routine. Inexperienced health professionals without an understanding of the philosophy of palliative care or the skills required often undertook the care. The data showed that it could be a very isolating experience for patients left alone in a side room, most of whom were unresponsive. The presence or absence of family members influenced the amount of care received.4 5 The results of these two studies suggest that the principles of palliative care are yet to be included in the culture of acute hospitals. It is as though the hospital environment reflects the busyness of everyday life in society, which still denies the naturalness and inevitability of death.

Where to from here? The questions go beyond the boundaries of medicine and belong to the human race. While the sanctity of life is overridden so often by the culture of war, and death is portrayed as a successful outcome, we will live with this paradox. There are bigger questions still to be asked about death and dying in society before deaths in hospital are attended with humanity and compassion. I, for one, hope my last days are not alone in a side room in an acute hospital. But I welcome the debate both in medical journals and in all facets of society.

Care pathway in Wales aims to improve care of dying patients

EDITOR—People always have died and always will die.1 Palliative care has now come out of hospices and is accepted as a mainstream specialty, influencing care across the NHS. In Wales a care pathway, developed from the work of Ellershaw et al,2 is being introduced across the whole region in various care settings, including acute hospitals and nursing homes.

The aim is to improve care of dying patients by implementing agreed evidence based clinical guidelines facilitated through the care pathway. The Clinical Effectiveness Support Unit and the National Assembly of Wales are supporting the process and evaluation.

Results of the pilot study in Bangor have shown important changes in practice, with improved analgesic prescribing. The availability of analgesics to control pain rose from 72% to 98% when the care pathway was implemented. The care pathway thus anticipates potential problems and empowers carers and nurses to give timely and effective interventions.

The pathway ensures that the diagnosis of dying is not attached inappropriately, either too early or late. The relatives are informed of anticipated events and retain choices and control.

We agree with many of the principles of a good death3: indeed, they underpin the pathway. We do not prescribe a lingering death, but all must be aware that the precise moment of death is unpredictable and not in our or anyone's control.