Hospice or rehabilitation hospital? alternatives for the terminally ill IVAN R. VAILE, MD
A publisher friend of mine informed me that, aside from the Bible, the largest number of books published yearly are cook books. Now the shelves are filled with books on death and dying. Death is in, and a spate of books on hospices will follow. Dr. Elisabeth Kiibler-Ross's book "On Death and Dying" (Macmillan, 1970) did a great service by making the medical professions and general public aware of the plight of the dying. The book will remain a fundamental source book on the subject. I recently watched a television interview of Dr. Kiibler-Ross. She came across as a brilliant and sympathetic woman, but when she began to talk of life after death with such conviction my scientific training impelled me to turn off the program. In an article in Commentary (June 1977, p. 35) Dr. Leslie Farber mentioned that Dr. Kiibler-Ross took a dying man, a total stranger, into her home so that her children could experience and help care for this man. It must have been wonderful for this man to be so cared for, but I believe that it could be nothing but damaging for the children. The experience of the pain and death of those close to us is inevitable, and there is no need to go searching for it; when it comes it will be painful enough, but practising for it only provides unnecessary heartache. I respect Dr. Kiibler-Ross's thinking, and when a sick, dying man expresses the belief in an afterlife, I would certainly encourage him in that belief; however, I wouldn't bring my own religious philosophy to his bedside. We are developing a new profession - thanatology. To it are attracted social workers, psychologists, psychiatrists and the ministry. The people who are to become thanatologists are usually young, healthy social workers and nurses with the bloom of health bursting
from their faces and bodies. There is an aura of health and vitality in even their most gentle speech. Terminally ill patients are constantly reminded by these people of their own plight; the contrast results in a very negative self-image. So what type of person would be most suitable to work with the ter-
minally ill patient? (I detest the word "work" but I can't find anything more suitable.) From my experience the person should be an older doctor, retired or soon to retire. He should act as a doctor-priest, since the art of healing came from priestly functions. He should look a little frayed, with gray-
0Novahistine* DH a ntitussive-decongesta nt
zNovahistine* Expectorant a ntitussive-decongesta nt-expectorant
SPECIALTY PRODUCTS FOR PEDIATRICS Complete prescribing information available on request
LZi.
ing hair, a little paunch and be a little stooped. He certainly should not have the look of a successful businessman; instead, his looks should show that time has not stood still for him. This doctor can provide the patient with answers to his or her medical questions by explaining in simple language the nature of the illness and helping with all those other worries that are uppermost in the patient's mind. A doctor moulds himself to the patient; if the patient wants to deny, to be angry, to believe in an afterworld - whatever it is that the patient expresses and hopes for, the doctor supports. He advises, explains and encourages but never engages in any sort of argument. In this way he encourages mutual trust and respect and, above all, he leaves the patient feeling that all is not lost and that there still is hope. Most of all, these patients need to be touched physically (something psychiatrists are loath to do) to assure them that they are just sick and not repulsive. They feel that they are dirty and ugly, and their self-esteem is at its lowest ebb. In my experience the stages that Dr. Kiibler-Ross describes: shock, anger, protest, bargaining and possibly some acceptance do occur, but never in any such order, and all are present in some degree at any one time. The patient never recovers
from the shock and is always angry and bargaining. Acceptance is superficial. At the moment the hospices are the in thing, and it looks as if they are spreading, but I feel strongly that they are a backward step. There is no denying that the emphasis by the hospices on the proper treatment of pain is a great contribution. My own feeling is not that we need hospices, but that we do need the enlargement of rehabilitation hospitals. A hospice reminds me of a line from Dante's "Divine Comedy": "Abandon ye all hope those who enter here." The person who is too sick to be treated at home should be admitted to a rehabilitation hospital, although, where possible, home care is still best. The best example that I know of for rehabilitation care is the Baycrest Hospital in Toronto. The hospice with beautiful grounds, bright curtains and flowers, beautiful and helping people and an Escoffier cuisine is a place the patient knows he is going to only to die. At Baycrest the rooms are small, crowded, plain, and there is a great deal of activity - the comings and goings of orderlies, nurses, doctors and visitors. The hallways are full of patients in wheelchairs. There are patients of every description: poststroke, postamputation, malignant
disease; you name it, and you will find it there; but the basic philosophy of Baycrest is not that the patients are there to die, but that everything will be done to take care of their pain and help them to live. The patients undergo procedures that one might think are unnecessary - some are uncomfortable and even painful to the patient, and he justifiably complains. Nevertheless there is gratitude beneath the complaints, because the patient knows that he or she has not been given up; everything is done to give him or her hope. The patient sees people leave improved, sees people die and feels surrounded by people who talk of life, not death. When I first started at Baycrest I wondered: "Why don't they let the people die; what good is another radiograph or painful trips to the Princess Margaret or Mount Sinai hospitals?" Now I have been totally converted to the philosophy of working for life rather than talking of death. The direction should be towards bigger and better rehabilitation hospitals where people can be sent to help them to live rather than to hospices to help them die. Hospices remind me of those beautiful mausoleums in California with magnificent buildings, gardens and organ music. Those mausoleums are to assuage the guilt of those who keep on living; the dead are gone.E
Des services a domicile pour los canc.reux. en phase terminale DENISE ROBILLARD Le 19 mars, M. Giles Caron, travailleur social professionnel et exemploys du Conseil regional des services sociaux et des services de sante du Montr6al m.tropolitain (CRSSSMM), assumait le poste de directeur g.n.ra1 de 1'Association d'entraide Ville-Marie (AEV), un service destine . assurer des soins . domicile aux canc6reux en phase terminale. Cette initiative constitue, selon M. Jean-Paul Ramsay, pr6sident du Conseil d'administration de cet organisme et directeur de la Residence
Berthiaume-DuTremblay, la pre- tionner . 100% la Soci.t. des infirmitre .tape de 1'entreprise de re- mi.res-visiteuses (SLy), les crit.res structuration de ce service. On d'admission qui furent imposes encherche actuellement . reviser la train.rent 1'abandon des canc.reux structure des soins et celle de 1'assis- en phase terminale. En 1974, les tance directe . la famille, qui consti- administrateurs du SIV d6cid.rent tuent les deux p6les indissociables de d'.tab1ir un service . leur intention; ce service. A cette fin, on aura pour- telle est 1'origine de 1'AEV. Le Conseil d'administration de vu en mai & 1'embauchage d'une conest compos6 de b.n.vo1es. 1'AEV d'une et sociale sei11.re d'intervention infirmi.re qui agira comme agent de Outre le personnel infirmier, on disliaison entre les diverses ressources. pose des services professionnels de Quand, en 1971, le ministre des m.decins et de 1'aide d'une .quipe Affaires sociales d6cidait de subven- de b.n.vo1es. Ce service est gratuit.
1292 CMA JOURNAL/MAY 19, 1979/VOL 120
A publisher friend of mine informed me that, aside from the Bible, the largest number of books published yearly are cook books. Now the shelves are filled with books on death and dying. Death is in, and a spate of books on hospices will follow. Dr. Elisabeth Kiibler-Ross's book "On Death and Dying" (Macmillan, 1970) did a great service by making the medical professions and general public aware of the plight of the dying. The book will remain a fundamental source book on the subject. I recently watched a television interview of Dr. Kiibler-Ross. She came across as a brilliant and sympathetic woman, but when she began to talk of life after death with such conviction my scientific training impelled me to turn off the program. In an article in Commentary (June 1977, p. 35) Dr. Leslie Farber mentioned that Dr. Kiibler-Ross took a dying man, a total stranger, into her home so that her children could experience and help care for this man. It must have been wonderful for this man to be so cared for, but I believe that it could be nothing but damaging for the children. The experience of the pain and death of those close to us is inevitable, and there is no need to go searching for it; when it comes it will be painful enough, but practising for it only provides unnecessary heartache. I respect Dr. Kiibler-Ross's thinking, and when a sick, dying man expresses the belief in an afterlife, I would certainly encourage him in that belief; however, I wouldn't bring my own religious philosophy to his bedside. We are developing a new profession - thanatology. To it are attracted social workers, psychologists, psychiatrists and the ministry. The people who are to become thanatologists are usually young, healthy social workers and nurses with the bloom of health bursting
from their faces and bodies. There is an aura of health and vitality in even their most gentle speech. Terminally ill patients are constantly reminded by these people of their own plight; the contrast results in a very negative self-image. So what type of person would be most suitable to work with the ter-
minally ill patient? (I detest the word "work" but I can't find anything more suitable.) From my experience the person should be an older doctor, retired or soon to retire. He should act as a doctor-priest, since the art of healing came from priestly functions. He should look a little frayed, with gray-
0Novahistine* DH a ntitussive-decongesta nt
zNovahistine* Expectorant a ntitussive-decongesta nt-expectorant
SPECIALTY PRODUCTS FOR PEDIATRICS Complete prescribing information available on request
LZi.
ing hair, a little paunch and be a little stooped. He certainly should not have the look of a successful businessman; instead, his looks should show that time has not stood still for him. This doctor can provide the patient with answers to his or her medical questions by explaining in simple language the nature of the illness and helping with all those other worries that are uppermost in the patient's mind. A doctor moulds himself to the patient; if the patient wants to deny, to be angry, to believe in an afterworld - whatever it is that the patient expresses and hopes for, the doctor supports. He advises, explains and encourages but never engages in any sort of argument. In this way he encourages mutual trust and respect and, above all, he leaves the patient feeling that all is not lost and that there still is hope. Most of all, these patients need to be touched physically (something psychiatrists are loath to do) to assure them that they are just sick and not repulsive. They feel that they are dirty and ugly, and their self-esteem is at its lowest ebb. In my experience the stages that Dr. Kiibler-Ross describes: shock, anger, protest, bargaining and possibly some acceptance do occur, but never in any such order, and all are present in some degree at any one time. The patient never recovers
from the shock and is always angry and bargaining. Acceptance is superficial. At the moment the hospices are the in thing, and it looks as if they are spreading, but I feel strongly that they are a backward step. There is no denying that the emphasis by the hospices on the proper treatment of pain is a great contribution. My own feeling is not that we need hospices, but that we do need the enlargement of rehabilitation hospitals. A hospice reminds me of a line from Dante's "Divine Comedy": "Abandon ye all hope those who enter here." The person who is too sick to be treated at home should be admitted to a rehabilitation hospital, although, where possible, home care is still best. The best example that I know of for rehabilitation care is the Baycrest Hospital in Toronto. The hospice with beautiful grounds, bright curtains and flowers, beautiful and helping people and an Escoffier cuisine is a place the patient knows he is going to only to die. At Baycrest the rooms are small, crowded, plain, and there is a great deal of activity - the comings and goings of orderlies, nurses, doctors and visitors. The hallways are full of patients in wheelchairs. There are patients of every description: poststroke, postamputation, malignant
disease; you name it, and you will find it there; but the basic philosophy of Baycrest is not that the patients are there to die, but that everything will be done to take care of their pain and help them to live. The patients undergo procedures that one might think are unnecessary - some are uncomfortable and even painful to the patient, and he justifiably complains. Nevertheless there is gratitude beneath the complaints, because the patient knows that he or she has not been given up; everything is done to give him or her hope. The patient sees people leave improved, sees people die and feels surrounded by people who talk of life, not death. When I first started at Baycrest I wondered: "Why don't they let the people die; what good is another radiograph or painful trips to the Princess Margaret or Mount Sinai hospitals?" Now I have been totally converted to the philosophy of working for life rather than talking of death. The direction should be towards bigger and better rehabilitation hospitals where people can be sent to help them to live rather than to hospices to help them die. Hospices remind me of those beautiful mausoleums in California with magnificent buildings, gardens and organ music. Those mausoleums are to assuage the guilt of those who keep on living; the dead are gone.E
Des services a domicile pour los canc.reux. en phase terminale DENISE ROBILLARD Le 19 mars, M. Giles Caron, travailleur social professionnel et exemploys du Conseil regional des services sociaux et des services de sante du Montr6al m.tropolitain (CRSSSMM), assumait le poste de directeur g.n.ra1 de 1'Association d'entraide Ville-Marie (AEV), un service destine . assurer des soins . domicile aux canc6reux en phase terminale. Cette initiative constitue, selon M. Jean-Paul Ramsay, pr6sident du Conseil d'administration de cet organisme et directeur de la Residence
Berthiaume-DuTremblay, la pre- tionner . 100% la Soci.t. des infirmitre .tape de 1'entreprise de re- mi.res-visiteuses (SLy), les crit.res structuration de ce service. On d'admission qui furent imposes encherche actuellement . reviser la train.rent 1'abandon des canc.reux structure des soins et celle de 1'assis- en phase terminale. En 1974, les tance directe . la famille, qui consti- administrateurs du SIV d6cid.rent tuent les deux p6les indissociables de d'.tab1ir un service . leur intention; ce service. A cette fin, on aura pour- telle est 1'origine de 1'AEV. Le Conseil d'administration de vu en mai & 1'embauchage d'une conest compos6 de b.n.vo1es. 1'AEV d'une et sociale sei11.re d'intervention infirmi.re qui agira comme agent de Outre le personnel infirmier, on disliaison entre les diverses ressources. pose des services professionnels de Quand, en 1971, le ministre des m.decins et de 1'aide d'une .quipe Affaires sociales d6cidait de subven- de b.n.vo1es. Ce service est gratuit.
1292 CMA JOURNAL/MAY 19, 1979/VOL 120
