International group issues proposal for standards for care of terminally ill BALFOUR M. MOUNT,. FRCS[C] The International Work Group on Death, Dying and Bereavement first met in November 1974. At that meeting a small group, the standards committee, was fonned to delineate the standards of care essential for dying patients, the role of their families and the support system for the care givers. At subsequent meetings of the work group, held every 18 months, the standards committee has continued this work, and its members have continued to meet in small groups whenever there was an opportunity. No one at that first conference realized how rapidly the hospice movement would evolve; how widespread it would become or how urgently these standards would be needed. At its most recent conference in January 1978, the committee decided that the following document should be published in its present form, stating the assumptions and principles underlying the standards, so that others could use them now, when they are so needed. Underlying the document was the idea that while institutions need guidelines to develop standards, each setting must develop its own standards based on certaln key assumptions and principles. This position was first proposed in an editorial in Omega (7: 191, 1976).
There was general agreement among the members that further editing must be done, and that regularly planned times to review and revise must be scheduled. This document has been accepted for publication by the American Journal of Nursing; publication in the Journal of the American Medical Association, the Lancet and other journals is being negotiated. It is hoped that before the document's next review at the June meetings of the International Work Group on Death, Dying and Bereavement, to be held in Mont Ste-Marie, Quebec, readers will correspond with the committee chairman or any of its members to comment on the strengths and weaknesses in the document and to propose changes. The members of the committee are care givers from many disciplines - divinity, medicine, nursing and social work - and social scientists in anthropology, psychology and sociology. Correspondence about this document should be addressed to Florence S. Wald, 101 Alps Rd., Branford, Connecticut 06405. Florence Wald is chairman of the standards committee and associate clinical professor, Yale University school of nursing.
There is agreement that patients treatment, which is designed to conwith life-threatening illnesses, in- trol pain in the broadest sense and cluding progressive malignancies, provide personal support for patient need appropriate therapy and treat- and family during the terminal ment throughout the course of ill- phase of an illness. In general, palness. At one stage, therapy is di- liative care requires limited use of rected towards investigation and in- apparatus and technology but extervention in order to control or tensive personal care and an ordercure such illness and alleviate asso- ing of physical and social environciated symptoms. For some persons, ment to be therapeutic in itself. There are two complementary however, the time comes when cure and remission are beyond current systems of treatment which may treatment. It is then that the inter- often overlap: One system is convention must shift to palliative cerned with eliminating a curable 1280 CMA JOURNAL/MAY 19, 1979/VOL. 120
disease and the other with relieving the symptoms resulting from the relentless progress of an incurable illness. There must be openness, interchange and overlap between the two systems so that the patient receives continuous appropriate care. The patient should not be subjected to aggressive treatment that offers no real hope of curing or controlling the disease and may only cause him further distress. Obviously the clinicontinued on page 1282
Principles
Patientoriented
I
Familyorieuted
I
Stafforieuted
I
General
CMA JOURNAL/MAY 19, 1979/VOL. 120 1281
a candidate for active treatment. Patients suffer not only from inappropriate active care, but also from cian must be alert for any shifts inept terminal care. This is well that may occur during a terminal documented by studies that only illness that again make the patient confirm what dying patients and INTERNATIONAL GROUP continued from page 1280
their families know at first hand. These principles have been prepared as an aid to those who have initiated or are planning programs for the terminally ill in delineating standards of care.
How to care when we cannot cure DAVID I. Roy, o THEOL
To die is an act of life. As we do not live alone, neither do we die alone. We may wonder whether this is not why many today would say with Montaigne: "It is dying, not death, that I fear." The International Work Group on
Death, Dying and Bereavement has written a document defining the assumptions and principles underlying standards for terminal care. I have been asked to review this document from an ethical point of view. A system of ethics says that decisions and deeds are responsible when they are consistent with an order of values. Where the pursuit of one value threatens to undermine another value, recourse can be made to the relative weighing of these values based on a philosophy of life. What, then, is really important, which values are decisive, when we are dealing with the dying, when we are called upon to care for those we cannot cure? People rarely die alone today, even if they die lonely. People usually die in hospitals and institutions, places often equipped with a massive and complex technology capable of supporting life even when cures are no longer possible. This technology is not a robot, working on patients all by itself. It demands the presence and competence of nurses, technicians, specialists and doctors. Dying today means dying with this technology and its technologists; dying has almost become a team activity, an interdisciplinary event. So, freDr. Roy is director of the centre for bioethics, Clinical Research Institute, Montreal
quently, people do not simply die; their dying calls for decisions. Depending on which decisions are taken, some people will die well, masters of their dying, not alone and not lonely. Others may die too late, reduced to biologic systems that have to be tended. Still others may die who could have lived. Decisions with these consequences are eminently moral decisions that can transform or deform the event of dying - of someone else's dying, let it be emphasized.
others. That is why the ancients spoke of an ars moriendi, an art of dying. In a way dying can be like dancing, something that one can do and not simply something one has to suffer as a stroke of fate. It is also something that one can do with one's own personal style. How else, if the performance called for is a final integration of one's life? However, can one do that alone if one has not lived alone? As the opening quotation would have it: to die is an act of life. Life, though, is communication. A second The docinnent mark of the document's ethical A complete evaluation of the creativity: it opens doors to bring work group's assumptions and prin- people together. Quality of life, as ciples really needs examples of how the document suggests, depends not these fundamental ideas are put into only on present or prospective phypractice, since practice reveals what siologic status, but on genuine comgeneral concepts and principles part- munication between people. A moment arrives when that communicaly conceal. Nevertheless, the scheme of as- tion is the thing that really matters. sumptions and principles, as pre- Medicine as a technical drama, sented, appears to be an admirable though still present, recedes to the model of creative ethics. The docu- background. Medicine as a commument is tough. It breathes hope. It nity of care surrounds and supports will not admit that throwing up our the dying person's spirit. The document recognizes that hands or turning our backs is our only option when we cannot cure. biologic life is not an absolute value, The document implies that time is and that a moment arrives when precious and that what we give to technologic attempts to prolong bioone another makes it even more so. logic life may interfere with higher Well, what can we give to someone personal values and should give way who is dying when cure is impos- to other forms of care. This position has been honoured to date by leadsible? ing religious and moral thinkers. Two With this question we touch the recently published hospital policies, document's originality and the reafrom the Beth Israel Medical Center, son for its being an example of New York State, and the Massacreative ethics. If we cannot cure, we can do everything possible to chusetts General Hospital, Massahelp a person live life's hours as chusetts, also emphasize the central richly as possible. Of course life's rights of the patient and the patient's last hours are different from all the family in making decisions. The
1282 CMA JOURNAL/MAY 19, 1979/VOL. 120
There was general agreement among the members that further editing must be done, and that regularly planned times to review and revise must be scheduled. This document has been accepted for publication by the American Journal of Nursing; publication in the Journal of the American Medical Association, the Lancet and other journals is being negotiated. It is hoped that before the document's next review at the June meetings of the International Work Group on Death, Dying and Bereavement, to be held in Mont Ste-Marie, Quebec, readers will correspond with the committee chairman or any of its members to comment on the strengths and weaknesses in the document and to propose changes. The members of the committee are care givers from many disciplines - divinity, medicine, nursing and social work - and social scientists in anthropology, psychology and sociology. Correspondence about this document should be addressed to Florence S. Wald, 101 Alps Rd., Branford, Connecticut 06405. Florence Wald is chairman of the standards committee and associate clinical professor, Yale University school of nursing.
There is agreement that patients treatment, which is designed to conwith life-threatening illnesses, in- trol pain in the broadest sense and cluding progressive malignancies, provide personal support for patient need appropriate therapy and treat- and family during the terminal ment throughout the course of ill- phase of an illness. In general, palness. At one stage, therapy is di- liative care requires limited use of rected towards investigation and in- apparatus and technology but extervention in order to control or tensive personal care and an ordercure such illness and alleviate asso- ing of physical and social environciated symptoms. For some persons, ment to be therapeutic in itself. There are two complementary however, the time comes when cure and remission are beyond current systems of treatment which may treatment. It is then that the inter- often overlap: One system is convention must shift to palliative cerned with eliminating a curable 1280 CMA JOURNAL/MAY 19, 1979/VOL. 120
disease and the other with relieving the symptoms resulting from the relentless progress of an incurable illness. There must be openness, interchange and overlap between the two systems so that the patient receives continuous appropriate care. The patient should not be subjected to aggressive treatment that offers no real hope of curing or controlling the disease and may only cause him further distress. Obviously the clinicontinued on page 1282
Principles
Patientoriented
I
Familyorieuted
I
Stafforieuted
I
General
CMA JOURNAL/MAY 19, 1979/VOL. 120 1281
a candidate for active treatment. Patients suffer not only from inappropriate active care, but also from cian must be alert for any shifts inept terminal care. This is well that may occur during a terminal documented by studies that only illness that again make the patient confirm what dying patients and INTERNATIONAL GROUP continued from page 1280
their families know at first hand. These principles have been prepared as an aid to those who have initiated or are planning programs for the terminally ill in delineating standards of care.
How to care when we cannot cure DAVID I. Roy, o THEOL
To die is an act of life. As we do not live alone, neither do we die alone. We may wonder whether this is not why many today would say with Montaigne: "It is dying, not death, that I fear." The International Work Group on
Death, Dying and Bereavement has written a document defining the assumptions and principles underlying standards for terminal care. I have been asked to review this document from an ethical point of view. A system of ethics says that decisions and deeds are responsible when they are consistent with an order of values. Where the pursuit of one value threatens to undermine another value, recourse can be made to the relative weighing of these values based on a philosophy of life. What, then, is really important, which values are decisive, when we are dealing with the dying, when we are called upon to care for those we cannot cure? People rarely die alone today, even if they die lonely. People usually die in hospitals and institutions, places often equipped with a massive and complex technology capable of supporting life even when cures are no longer possible. This technology is not a robot, working on patients all by itself. It demands the presence and competence of nurses, technicians, specialists and doctors. Dying today means dying with this technology and its technologists; dying has almost become a team activity, an interdisciplinary event. So, freDr. Roy is director of the centre for bioethics, Clinical Research Institute, Montreal
quently, people do not simply die; their dying calls for decisions. Depending on which decisions are taken, some people will die well, masters of their dying, not alone and not lonely. Others may die too late, reduced to biologic systems that have to be tended. Still others may die who could have lived. Decisions with these consequences are eminently moral decisions that can transform or deform the event of dying - of someone else's dying, let it be emphasized.
others. That is why the ancients spoke of an ars moriendi, an art of dying. In a way dying can be like dancing, something that one can do and not simply something one has to suffer as a stroke of fate. It is also something that one can do with one's own personal style. How else, if the performance called for is a final integration of one's life? However, can one do that alone if one has not lived alone? As the opening quotation would have it: to die is an act of life. Life, though, is communication. A second The docinnent mark of the document's ethical A complete evaluation of the creativity: it opens doors to bring work group's assumptions and prin- people together. Quality of life, as ciples really needs examples of how the document suggests, depends not these fundamental ideas are put into only on present or prospective phypractice, since practice reveals what siologic status, but on genuine comgeneral concepts and principles part- munication between people. A moment arrives when that communicaly conceal. Nevertheless, the scheme of as- tion is the thing that really matters. sumptions and principles, as pre- Medicine as a technical drama, sented, appears to be an admirable though still present, recedes to the model of creative ethics. The docu- background. Medicine as a commument is tough. It breathes hope. It nity of care surrounds and supports will not admit that throwing up our the dying person's spirit. The document recognizes that hands or turning our backs is our only option when we cannot cure. biologic life is not an absolute value, The document implies that time is and that a moment arrives when precious and that what we give to technologic attempts to prolong bioone another makes it even more so. logic life may interfere with higher Well, what can we give to someone personal values and should give way who is dying when cure is impos- to other forms of care. This position has been honoured to date by leadsible? ing religious and moral thinkers. Two With this question we touch the recently published hospital policies, document's originality and the reafrom the Beth Israel Medical Center, son for its being an example of New York State, and the Massacreative ethics. If we cannot cure, we can do everything possible to chusetts General Hospital, Massahelp a person live life's hours as chusetts, also emphasize the central richly as possible. Of course life's rights of the patient and the patient's last hours are different from all the family in making decisions. The
1282 CMA JOURNAL/MAY 19, 1979/VOL. 120
