Palliative care: it's the quality of life remaining that matters JIM GARNER

The patient knew she was going to die soon, perhaps in a few days, but her pain was well controlled and she was spending the warm afternoon in the garden, enjoying one of the last few glimpses of this beautiful earth that she would ever have. One of the small children playing nearby came up to her. "Why, you poor lady, your face is all hurt," she said. "Shall I kiss it better?" It's a schmaltzy story, but it's also true. And what does schmaltz matter if it brings some joy (and it did) to a patient suffering terminal cancer? As Dr. Balfour Mount explains so well in this issue of CMAJ (page 119), when medical science can no longer seriously affect the length of survival, it's the quality of survival that matters. And quality, to a woman who's had grandchildren of her own to love, means lying pain-free in a sunlit garden and enjoying the play of nearby children. The scene described above took place at St. Christopher's Hospice, London. St. Christopher's was not the first institution to specialize in caring for terminally ill patients but it seems to have become the best known. Certainly the hospice is looked upon as a model in many parts of the world. The day I visited there were physicians, chaplains and social workers from half-a-dozen countries present to learn. Care of the dying has become somewhat of an in-thing recently, which may not be too bad an idea when we think of the neglect the field has suffered for so many years; probably still does, too. Of those 70% of Canadians who die in institutions, how many are able to spend their last few days in the greatest physical and mental comfort that we could give them? How many bereaved relatives get telephone calls from health personnel to see how they are coping? For that matter, how many provincial medicare commissions have even begun to consider funding such a service?

There are many kinds of illness (but particularly terminal illness) where the physician is treating not so much the patient as the family. Dr. Cicely Saunders, medical director at St. Christopher's, says the word hospice was chosen because it means "a resting place for travellers" and implies concern for the families as well as patients. "We try to think of the hospice as admitting the whole family rather than just the patient," she told CMAJ. She says the hospice has shown that follow-up of selected bereaved people can lessen the incidence of subsequent morbidity. The availability of support for the family eases the mind of the patient. At the palliative care unit in Montreal's Royal Victoria Hospital a full-time social worker, Ann Chant, visits homes and counsels families, unravelling problems that to them are unfamiliar things like finding legal aid, unfreezing joint bank accounts and putting the family in touch with the various agencies that can help with homemaking and financial problems. There are really two things the health care system can do for a patient suffering a terminal illness. One is to relieve him of his pain; and Dr. Ronald Melzack's data suggest that this is possible with few exceptions (see page 125). The other is to provide the most supportive possible kind of care. Staff/patient ratio In the hospital this entails a high staff to patient ratio. At St. Christopher's, there are 1.25 nurses to each patient, in addition to lay help and volunteers. At the PCU in the Royal Victoria, nurse staffing is about the level of an intensive care unit. Above all, it's a different kind of nursing. The nurses get more involved with their patients; they don't bustle around with that breeziness usually considered standard equipment in most

hospitals - "We don't use that 'you're going to be fine' attitude; we just take it a day at a time," says Ms. Valerie Rickards, one of the Royal Victoria RNs. "Quite a few of our standard nursing tenets are turned over." The staff tries to make the unit a cheerful place. "In other wards, everybody is whispering around. There's actually quite a lot of laughter here. We have no deep hidden secrets." One secret that is not kept is the almost certain outcome of the patient's disease. The staff attempts to answer openly questions about the prognosis. The emphasis is not, however, on death and dying but on the quality of the life remaining to the patient. Some patients are admitted temporarily for assessment so that they can be seen to be discharged. Sixteen old people who are in normal health for their age live at the hospice. And there are the children. The story with which this article started may seem a little ghoulish, a little reminiscent of the scene in "Brave New World" where children were paraded through wards of dying people regularly to condition them into acceptance of their inevitable fate. Some of what Huxley intended as a satire is part of the daily life at St. Christopher's in what is clearly a compassionate and successful experiment. The children of the professional staff attend day nursery at the hospice and mingle with the patients, to whom they supply an enormous lift. And it doesn't bother the kids. A further bonus produced by the day nursery is the relief it gives to the staff. There is emotional strain in this type of care, and if a mother can take lunch with her child every day it eases the load. Dr. T.S. West, one of the senior staff physicians, says the day nursery is an important factor in staff morale. St. Christopher's has a very low rate of turnover of nurses. "We've

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never had to use nursing agencies," he told CMAJ. "Most of our nurses walk in through the front door." In Montreal Dr. Mount (who spent 3 months at St. Christopher's before becoming first director of the Royal Vic's PCU) agrees that having children around is a factor in defusing the emotional load of the staff. "We'd like to have a daycare centre associated with the ward," he told CMAJ. But Mount does not wholly follow St. Christopher's. Particularly he has "serious reservations" as to whether society can afford to support an adequate number of such hospices. He believes the answer is to set up PCUs in general hospitals. What is an adequate number of beds? "There are different estimates of the proportion of beds that should be set aside for a PCU," he answered. "Estimates at Royal Victoria are very rough - perhaps a 30 to 40 bed unit." The RVH has a total of 1000 beds. Cost debate The debate on relative costs is obviously far from complete. The immediate question is why it would cost more to maintain x number of palliative care beds in one hospice than the same number of beds in six general hospitals. Maybe it wouldn't - but would a hospice be an additional cost whereas a PCU within a general hospital would tend to be a diversion of existing resources? Would patients be reassured by being able to stay in the general hospital they had come to respect, where their physician could visit with ease? Thirty or 40 beds of 1000 is not a high proportion, and the reason, explains Dr. Mount, is that the home care team reduces the requirement for PCU bed space. The service provides the necessary professional support for those patients who can be cared for by their families. Sometimes the patient will come into the unit for his last few days, and in other cases he will die at home. The service is based on the premise that it is better treatment for the patient to be at home with his family, and it enables the family to express its love by sharing in the caring during this final leave-taking. The domiciliary service, then, is not intended as a money-saving device; nevertheless it does save money. Mrs. Dottie Wilson, administrator of the PCU, says if it is assumed that half the patient days on the domiciliary service would otherwise be hospital days, the service saved nearly $200 000 in 1975. This is only an approximate costing, and a more refined study will produce more precise figures by the end of this year. St. Christopher's has a domiciliary service with the same doctrine. It too

is a money-saver, and the British Department of Health, which was involved from the beginning, provides generous contractual arrangements through its local health authority. Volunteers A concept Mount has developed extensively is the use of hospital volunteers for the palliative care unit. These unpaid helpers - mostly women with about 10 men - give varying amounts of time but between them provide a constant coverage of three or four people from 9 am to 10 pm every day. And there's no shortage of volunteers - indeed there's a waiting list (somewhat to the perturbance of other parts of the hospital, where volunteers are in less than ample supply at times). Many of the volunteers are relatives of people who have died in the hospital, although there is a rule that a year must elapse between the death and enrolment as a volunteer. (That's the rule, but survivors are welcomed back as visitors and it's possible a regular visitor may find the occasional way of being useful.) Other volunteers are attracted by listening to a speech by one of the staff or by what they may have heard through intermediaries. The unit has a training program for the volunteers - organized, appropriately enough, by a volunteer, Dr. Christine Allen, a PhD teacher of philosophy at Montreal's Concordia University. The volunteers learn some of the basic nursing skills, such as how to turn a patient and make him comfortable, and they are available for letter-writing, conversation, counselling and general companionship. Some of their efforts are directed toward the families, too. Dominating fact

Yet all this attention to the patients' mental welfare is not going to remove the one dominating fact of his being that there is so very little time left. The much-referenced (elsewhere in this issue) Kiibler-Ross defines a series of mental adjustments we tend to go through as we integrate the fact that we are facing death. Her "stages" include denial and isolation, anger, bargaining, depression and acceptance. The patient can be helped through this process but the psychiatric manpower is not available to do it; in these Montreal and London units it is done chiefly by skilled nurses and volunteers. (At both locations there are psychiatrists available, but in fact their chief work is providing support for the staff rather than the patients, although they do see a few of the latter.) The median length of stay of PCU patients is eleven days. In this final

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period they sleep a lot, according to research assistant Miriam Gillitt. "When they're awake they may do something functional - we have had a few of them finish handicrafts. Often they lie thinking." The attempt is made to assure the presence when appropriate of a staff member at these times. "The emphasis," says Dr. Mount, "is on listening. We would like to meet the patients where they are rather than where we would like them to be." A time to die is also a time for honesty. The staffs of these two institutions see many families finally united in understanding after, sometimes, long estrangements. Nor is there time for posturing, for holier-than-thou pretences. Working faith At St. Christopher's the hospice chaplain is there if needed - "untidily around", to use the phrase of Dr. West. Many of St. Christopher's staff have what Dr. Saunders calls a working faith, and although there isn't a great show of it to visitors, the annual report describes the hospice as a Christian foundation, one founded through a working group that met regularly to study and pray together. But St. Christopher's is remarkably ecumenical - it honours its first patient, a Jew who escaped from the Warsaw ghetto and gave the first donation of £500 to start the foundation, with a window in the front hall. "I'll be a window in your home," he told Dr. Saunders shortly before his death in 1948. At the Royal Victoria the staff members have a broad range of individual faiths and beliefs but share a common recognition of the need to allow their patients' ultimate metaphysical and philosophical questions to surface. "For some of our patients and their families, says Dr. Mount, "these questions will have spiritual answers and for some they will have philosophical answers, or the absence of answers. What is apparent is that questions regarding the nature and meaning of life and death loom large when death confronts us. Total patient care in this setting must allow and facilitate expression of the patients' concerns, fears and hopes in these areas." When a patient dies, a short memorial prayer is said and the other patients are told. The curtains are not drawn. It is a shared event. The staff is not ashamed to show grief and many times a member will go to the funeral and visit the family. To those who are entrusted with the last few days of the dying, health means care, not only with the hands or the brain, but with the heart too. U

Palliative care: it's the quality of life remaining that matters.

Palliative care: it's the quality of life remaining that matters JIM GARNER The patient knew she was going to die soon, perhaps in a few days, but he...
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