deception and manipulation ultimately helps produce a society of cynics, liars and manipulators, and undermines the trust which is essential to a just social order. I would say, however, that deception occurs under two circumstances: (a) you deny the truth to someone who has a right to the truth and (b) you deny the truth for the purpose of eliciting behaviour from an individual that would not otherwise have been elicited. Concerning the first point, truth is not an absolute right. We do not owe truth to everyone who asks us a question; for example, people who ask questions about our intimate life have no right to this information. To deny them this information does not constitute a lie. The second point is perhaps more compelling. Our anthropologist did not attempt to elicit a new behaviour from the health professionals he was observing. Similar observations might have been made without the observer adopting the role of a patient but it would have required 3 or 4 months for him to become unobtrusive at the hospital, and even then it could be argued that his presence might have coloured the responses of the professionals he was observing. Simpson comments that the principle of informed consent was "methodically ignored". On the contrary, the experimental subject was aware of the implications of the experiment and signified that awareness in writing. The hospital ward most directly affected by the experiment was the palliative care unit. The staff members of this ward were fully aware that their function was being evaluated as part of a general evaluation of the pilot project. The staff of the general surgical ward were aware only in a general way of the evaluation of terminal care at the Royal Victoria Hospital as part of the palliative care service pilot project. To have disclosed the details of this specific experiment in advance would have negated the experimental design. Simpson's assumption that "insufficient concern for the staff and volunteers so systematically deceived was shown throughout" is disappointing. He might have made a constructive point had he suggested that the authors might have included a clearer description of how the hospital staff were debriefed. In fact, the hospital medical, paramedical and volunteer teams involved were carefully debriefed in a series of specially arranged meetings. The matter was of utmost concern to those of us who developed the palliative care service. In setting out the basic principles that he considers prerequisites to calling such research tactics justifiable
Simpson has produced a list of prin- reason for this principle - that those ciples that were, in our opinion, all who make the needed commitment met by the experiment. We recognized must find support - is not mentioned. that the palliative care service pilot St. Christopher's Hospice is a Christian project was unique in North American foundation, and staff with different teaching hospitals and that this remark- beliefs will search for other supports. able opportunity carried with it a If they did not, I think it unlikely that weighty responsibility for evaluating all many would be able to remain in such aspects of the experience. Our evalua- work at the depth of involvement nection studies included attempts to evalu- essary to serve the patients and families. In the article "The problem of caring ate staff stress, cost, pain control, bereavement intervention and patient and for the dying in a general hospital; family stress. The area most difficult the palliative care unit as a possible to assess was the impact of care re- solution" (Can Med Assoc J 115: 119, ceived in the palliative care unit as 1976) Dr. Balfour M. Mount, referring compared with care received on a gen- to separate institutions with special expertise in treating terminally ill patients, eral surgical or medical ward. In retrospect as well as prospect my comments that "analysis of the ecocolleagues and I believe the experimen- nomics of maintaining such institutal method was valid and justifiable. tions.., suggests that society cannot This does not mean that we would re- afford to support an adequate number peat the experiment. In a number of to meet the need." St. Christopher's areas we could have made stronger, Hospice, a teaching unit, has as high more objective and better documented a cost per patient bed per week as any observations. I do not agree, however, similar institution; the cost of maintainwith the assessment that nothing new ing a patient is 70% of the cost in a has been learned. Many physicians who teaching hospital and 80% of the cost heard or read the results have stated in an ordinary general hospital in its that they will henceforth practise med- own area. The extra cost is the capital icine in a different way because of this needed for a separate building. Once experiment. If the data generated are that has been acquired our experience not new, the impact they had on a wide suggests that maintenance should be variety of health care professionals was less expensive. All the same, experience is now new and highly worth while. I share Dr. Simpson's concern re- showing us that such ventures as the garding the impact of this experiment palliative care unit at the Royal Vicon the observer. This is one reason toria Hospital in Montreal are well able why I would hesitate to take part in to introduce both care and teaching such an experiment again. I believe the into the general field. One of the main design produces inordinate and exces- aims in setting up St. Christopher's in sive stress on the observer and that 1967 was to feed basic principles back this is sufficient reason to curtail such into the general health service and to the patients' own homes. This unit and activities. others have shown how transferable BALFOUR M. MOUNT, FRCS(CJ our work has become. Palliative care service Royal Victoria Hospital Montreal, PQ CICELY SAu.uts, OBE, MA, MD, FRCP Medical director St. Christopher's Hospice London, England
Reference 1. WARWICK DP: Tearoom trade: means and ends in social research, in The Hastings Center Studies, vol 1, no 1, Institute of Society Ethics and the Life Sciences, 1973, p 37
Palliative care for the terminally ill To the editor: I congratulate Dr. David A.E. Shephard on his report of the international seminar in Montreal last November that examined the state of the art of palliative care for the terminally ill and their families (Can Med Assoc J 116: 522, 1977). Those who were not able to attend this excellent conference will have been glad to have it so ably summarized for them. However there is one omission that, to me, is very important. My basic principles of palliative care are listed in Table I of the report: in the comment on principle 13 - commitment - my main
Hemophilia registration To the editor: The Canadian Hemophilia Society is undertaking a comprehensive registration project to assist hemophiliacs. This project has the following objectives: registration of all hemophiliacs; creation of treatment centres; education of all involved in various aspects of hemophilia; and rehabilitation and social adjustment of hemophiliacs. The society also wishes to make all patients with hemophilia aware of current treatment methods. Your help in drawing the attention of your readers to this project would be greatly appreciated. RONALD E. GEORGE President, Canadian Hemophilia Society Chedoke Centre P0 Box 2085 Hamilton, Oat.
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