- Email: [email protected]
Ethical emergencies and ethical consultations
682
Ethical emergencies and ethical consultations SiR,—You identify the need for a way of dealing with ethical emergencies arising in connection with innovative therapy of terminally ill patients (Feb 15, p 349). This is part of a wider issue in clinical practice resulting from striking technical advances, a greater
patient autonomy and public awareness, and a readiness to resort to litigation. In North America some centres have establishedl-3 24-hour ethics consultation services to resolve difficulties for individual patients and to identify areas of worry and dispute during clinical management. The help of trainedprofessional ethicists can be requested by members of the clinical team, or by patients or their representatives. Because no one individual can have all the necessary ethics and clinical skills knowledge, the ethicist is backed by an interdisciplinary ethics committee. The four commonest reasons for initiating ethics consultation are incapacitated patients with no close relatives to give consent for clinical procedures, ethical conflict amongst clinicians, ethical conflict between clinicians and patients, and unusual and complex cases. US clinicians, after initial reserve, are said to be supportive, and it is claimed that disputatious and possibly litigious situations can be resolved with least harm to all concerned if difficulties can be discussed openly, explanations given, and tempers cooled (which is similar to advice given in Britain by medical defence organisations). Apart from in vitro fertilisation, this arrangement has no formal counterpart in Britain. Local research ethics committees do not have responsibility to arbitrate about issues arising during routine clinical practice,5,6 and the training, skills, and responsibilities of consultants have allowed ethical issues to be dealt with as they arise. But are the changes in medical practice, the new ethical issues raised by medical genetics,’ and the greatly increased public awareness so profound as to require new arrangements? You are correct to suggest the need for more discussion. Department of Medical Genetics, St Mary’s Hospital, Manchester M13 0JH, UK
RODNEY HARRIS
1. Pence GF. Classical cases m medical ethics. New York: McGraw-Hill, 1990. 2. Culver CM. Ethics at the bedside. Dartmouth: New England Press, 1990. 3. Fletcher JC, ed. Introduction to clinical ethics and health care law legal commentaries, by Margot L. White. Charlottesville, VA. Ibis Publishing Company, 1991. 4. Schiedermayer JL. Ethics consultation: skills, roles, and training. Ann Int Med 1991; 114: 115-60. 5. Guidelines on the practice of ethics committes m medical research involving human subjects: a report of the Royal College of Physicians, 2nd ed. London: RCP,
January, 1990. Department of Health. Local research ethics committee. Health Service Guidelines: HSG(91)5. Heywood (Lancashire) Department of Health, 1991. 7. Ethical issues in clinical genetics: a report of a working group of the Royal College of Physicians Committees on Ethical Issues m Medicine and Clinical Genetics. 6.
London: RCP, 1991.
SIR,-As the consultant who made the decision to administer methylene blue, as referred to in your editorial of Feb 15,should like to make some comments. Few would take issue with your statement that a one-off trial of an innovative therapy in a critically ill patient is no substitute for a planned study. Nevertheless, in the intensive care unit setting new therapeutic approaches are continually being introduced, often in a situation where formal clinical study may not be feasible. Provided that the effects of such treatments are closely monitored, as should be the case in intensive care units, I believe that well recorded observations are valuable and worthy of reporting. They may in turn lead to the introduction of these new treatments on a regular basis, examples being the introduction of the newer techniques of renal replacement therapy and the re-introduction of noradrenaline for controlled vasoconstrictor therapy in septic shock. The issue of informed consent in the context of sedated or unconscious patients in intensive care is difficult. Your qualms about the validity of consent received from despairing relatives certainly strike a chord, and you are clearly floating the idea of an emergency ethics opinion mechanism. However, clinical research ethics committees seem unwilling to accept responsibility for
care patients’ participation in clinical research. In general they require intensive care clinicians to seek consent from relatives
intensive
who may be in distress, even when the research involves little from standard practice. Furthermore, they usually demand written consent which may be more stressful for relatives than a clear explanation and oral consent in front of a witness. The written information sheet required is also of doubtful value when shown to a distressed relative. I am therefore very uncertain whether an emergency ethics committee consultation would help. I do not think, however, that one should be too negative about the validity of consent obtained from relatives of the critically ill. In the intensive care unit it is essential that all clinical management decisions are discussed fully with patients’ relatives. With continuing dialogue a close rapport can be developed, and most relatives are able to appreciate and understand what we are trying to do and give meaningful consent for special therapy, procedures, clinical research, or indeed organ donation.
departure
Intensive Therapy Unit, Western General Hospital,
Edinburgh EH4 2XU, UK
IAN S. GRANT
Ethics and clinical research in anaesthesia SiR,—Your Feb 8 editorial made several useful points. I was, however, concerned by the third paragraph, in which you imply that research in clinical anaesthesia does not (and presumably cannot) offer therapeutic benefit to the patient, and that other doctors may judge anaesthesia research of minor importance. Do you really believe that the change from ether to propofol-with the ability to have day-case surgery under anaesthesia--or the
introduction of dantrolene for malignant hyperpyrexia offer no benefit to the patient? With respect to your second point, of course other specialties may not see the need for some anaesthetic research; I do not see the need for some of theirs, but I tend to assume that this is a lack of understanding on my part about a project agreed by their local ethical and scientific committees. If other specialties do still consider anaesthesia an unimportant branch of medicine, I feel sure that most of their patients do not. Department of Anaesthetics, Royal Postgraduate Medical School, Hammersmith Hospital, London W12 0NN, UK
D. N. F. HARRIS
Insurance and HIV antibody testing SiR,—A recent report’ showed that 67% of AIDS specialists rated difficulty in getting life insurance as a major disadvantage for individuals who undergo HIV antibody testing. Furthermore, 88% of specialists felt that this discouraged people from being tested. By contrast, only 3 of 1400 adults interviewed believed that this would be a deterrent to HIV antibody testing. Thus, there is an important discrepancy between the views of health professionals and those of potential candidates for HIV tests. Counselling texts have included statements such as "in some cases even a negative result can lead to insurance companies asking further questions; whether this will influence the terms of insurance cover is likely to depend on the insurance company and how satisfied they are with the answers they receive".2 Life insurance might be withheld or higher premiums charged for people who have had a negative HIV antibody test,3 To clarify this issue we approached the Association of British Insurers (ABI) who agreed to produce a poster and leaflet outlining their guidelines for people undergoing HIV antibody testing. The leaflet says, "People should be reassured that if they have an HIV antibody test and the result is negative they will face no difficulty in obtaining future life insurance because of having the test. Existing life insurance policies will not be affected whatever the test result". It also set out the questions about HIV and AIDS that are asked on the proposal forms. Between July and November, 1991, we assessed the effects of the availability of this information on patients considering HIV testing in our clinics. These patients are seen by a health adviser, who administers a simple questionnaire to assess the effects of the posters and leaflets on the patients’ likelihood of
undergoing a test.
Ethical emergencies and ethical consultations SiR,—You identify the need for a way of dealing with ethical emergencies arising in connection with innovative therapy of terminally ill patients (Feb 15, p 349). This is part of a wider issue in clinical practice resulting from striking technical advances, a greater
patient autonomy and public awareness, and a readiness to resort to litigation. In North America some centres have establishedl-3 24-hour ethics consultation services to resolve difficulties for individual patients and to identify areas of worry and dispute during clinical management. The help of trainedprofessional ethicists can be requested by members of the clinical team, or by patients or their representatives. Because no one individual can have all the necessary ethics and clinical skills knowledge, the ethicist is backed by an interdisciplinary ethics committee. The four commonest reasons for initiating ethics consultation are incapacitated patients with no close relatives to give consent for clinical procedures, ethical conflict amongst clinicians, ethical conflict between clinicians and patients, and unusual and complex cases. US clinicians, after initial reserve, are said to be supportive, and it is claimed that disputatious and possibly litigious situations can be resolved with least harm to all concerned if difficulties can be discussed openly, explanations given, and tempers cooled (which is similar to advice given in Britain by medical defence organisations). Apart from in vitro fertilisation, this arrangement has no formal counterpart in Britain. Local research ethics committees do not have responsibility to arbitrate about issues arising during routine clinical practice,5,6 and the training, skills, and responsibilities of consultants have allowed ethical issues to be dealt with as they arise. But are the changes in medical practice, the new ethical issues raised by medical genetics,’ and the greatly increased public awareness so profound as to require new arrangements? You are correct to suggest the need for more discussion. Department of Medical Genetics, St Mary’s Hospital, Manchester M13 0JH, UK
RODNEY HARRIS
1. Pence GF. Classical cases m medical ethics. New York: McGraw-Hill, 1990. 2. Culver CM. Ethics at the bedside. Dartmouth: New England Press, 1990. 3. Fletcher JC, ed. Introduction to clinical ethics and health care law legal commentaries, by Margot L. White. Charlottesville, VA. Ibis Publishing Company, 1991. 4. Schiedermayer JL. Ethics consultation: skills, roles, and training. Ann Int Med 1991; 114: 115-60. 5. Guidelines on the practice of ethics committes m medical research involving human subjects: a report of the Royal College of Physicians, 2nd ed. London: RCP,
January, 1990. Department of Health. Local research ethics committee. Health Service Guidelines: HSG(91)5. Heywood (Lancashire) Department of Health, 1991. 7. Ethical issues in clinical genetics: a report of a working group of the Royal College of Physicians Committees on Ethical Issues m Medicine and Clinical Genetics. 6.
London: RCP, 1991.
SIR,-As the consultant who made the decision to administer methylene blue, as referred to in your editorial of Feb 15,should like to make some comments. Few would take issue with your statement that a one-off trial of an innovative therapy in a critically ill patient is no substitute for a planned study. Nevertheless, in the intensive care unit setting new therapeutic approaches are continually being introduced, often in a situation where formal clinical study may not be feasible. Provided that the effects of such treatments are closely monitored, as should be the case in intensive care units, I believe that well recorded observations are valuable and worthy of reporting. They may in turn lead to the introduction of these new treatments on a regular basis, examples being the introduction of the newer techniques of renal replacement therapy and the re-introduction of noradrenaline for controlled vasoconstrictor therapy in septic shock. The issue of informed consent in the context of sedated or unconscious patients in intensive care is difficult. Your qualms about the validity of consent received from despairing relatives certainly strike a chord, and you are clearly floating the idea of an emergency ethics opinion mechanism. However, clinical research ethics committees seem unwilling to accept responsibility for
care patients’ participation in clinical research. In general they require intensive care clinicians to seek consent from relatives
intensive
who may be in distress, even when the research involves little from standard practice. Furthermore, they usually demand written consent which may be more stressful for relatives than a clear explanation and oral consent in front of a witness. The written information sheet required is also of doubtful value when shown to a distressed relative. I am therefore very uncertain whether an emergency ethics committee consultation would help. I do not think, however, that one should be too negative about the validity of consent obtained from relatives of the critically ill. In the intensive care unit it is essential that all clinical management decisions are discussed fully with patients’ relatives. With continuing dialogue a close rapport can be developed, and most relatives are able to appreciate and understand what we are trying to do and give meaningful consent for special therapy, procedures, clinical research, or indeed organ donation.
departure
Intensive Therapy Unit, Western General Hospital,
Edinburgh EH4 2XU, UK
IAN S. GRANT
Ethics and clinical research in anaesthesia SiR,—Your Feb 8 editorial made several useful points. I was, however, concerned by the third paragraph, in which you imply that research in clinical anaesthesia does not (and presumably cannot) offer therapeutic benefit to the patient, and that other doctors may judge anaesthesia research of minor importance. Do you really believe that the change from ether to propofol-with the ability to have day-case surgery under anaesthesia--or the
introduction of dantrolene for malignant hyperpyrexia offer no benefit to the patient? With respect to your second point, of course other specialties may not see the need for some anaesthetic research; I do not see the need for some of theirs, but I tend to assume that this is a lack of understanding on my part about a project agreed by their local ethical and scientific committees. If other specialties do still consider anaesthesia an unimportant branch of medicine, I feel sure that most of their patients do not. Department of Anaesthetics, Royal Postgraduate Medical School, Hammersmith Hospital, London W12 0NN, UK
D. N. F. HARRIS
Insurance and HIV antibody testing SiR,—A recent report’ showed that 67% of AIDS specialists rated difficulty in getting life insurance as a major disadvantage for individuals who undergo HIV antibody testing. Furthermore, 88% of specialists felt that this discouraged people from being tested. By contrast, only 3 of 1400 adults interviewed believed that this would be a deterrent to HIV antibody testing. Thus, there is an important discrepancy between the views of health professionals and those of potential candidates for HIV tests. Counselling texts have included statements such as "in some cases even a negative result can lead to insurance companies asking further questions; whether this will influence the terms of insurance cover is likely to depend on the insurance company and how satisfied they are with the answers they receive".2 Life insurance might be withheld or higher premiums charged for people who have had a negative HIV antibody test,3 To clarify this issue we approached the Association of British Insurers (ABI) who agreed to produce a poster and leaflet outlining their guidelines for people undergoing HIV antibody testing. The leaflet says, "People should be reassured that if they have an HIV antibody test and the result is negative they will face no difficulty in obtaining future life insurance because of having the test. Existing life insurance policies will not be affected whatever the test result". It also set out the questions about HIV and AIDS that are asked on the proposal forms. Between July and November, 1991, we assessed the effects of the availability of this information on patients considering HIV testing in our clinics. These patients are seen by a health adviser, who administers a simple questionnaire to assess the effects of the posters and leaflets on the patients’ likelihood of
undergoing a test.