1321
make
advance directive. A patient must make judgments about elaborate medical procedures and potential quality of life. Difficult clinical decisions compounded by diagnostic and prognostic uncertainties are made even more difficult when the patient’s preferences regarding very specific to
an
advance
EDITORIALS
Advance directives Improvements in life-sustaining technologies have focused attention on the dilemmas facing those who must decide about the application of such procedures. In the UK, the British Medical Association has given cautious approval to the introduction of advance directives; in the USA, the 1991 Patient Self Determination Act requires all hospitals, nursing homes, and home health agencies to advise patients of their rights to accept or refuse medical care and to execute an advance directive.1,2 This usually takes the form of a written instructional directive for end-of-life care ("living will") and/or the appointment of a proxy to make decisions in the event of the patient being unable to do so. Such directives are largely welcomed by physicians, patients, and their families because they rely on informed consent, extend patient autonomy, and reduce physician concerns about legal liability for actions carried out in good faith.12 One especially salient purpose of advance directives is to avoid recourse to the courts to resolve difficulties associated with decision-making for incapacitated patients such as those in a persistent vegetative stated The apparent simplicity of advance directives is deceptive and their use raises many questions. Reservations have been expressed about the meaning, reliability, durability, and portability of the documents.3In the USA there is a wide disparity between the large percentage of persons who indicate a desire to die without heroic measures and the small 4 percentage who have executed advance directives.4 For several reasons, such a document may prove difficult to sign. Patients may feel that signing is the psychological equivalent of an admission that they are giving up and are going to die soon, or that the directive will result in their receiving less treatment than they would desire. Kubler-Ross, among others, has described the complex psychological adjustments associated with terminal illness; the defence mechanisms we use when contemplating death in general and our own mortality in particular are well documented.6 Problems arise in eliciting the information required
interventions must also be taken into consideration. Listing of possible interventions may shift attention away from overall treatment goals and may lead to prescription of inappropriate medical care.Quality of life is a dynamic, multidimensional, subjective construct that changes with time and stated A simple sentence or two is unlikely to capture this complexity, especially in the context of dying, where issues such as transience and spiritual and existential meaning may be the most relevant to the individual.99 Schneiderman et apo have now shown, in a prospective randomised clinical trial, that execution of advance directives by patients with life-threatening illnesses had no significant positive or negative effect on the patients’ well-being or health status. Nor, although most patients chose to limit life-sustaining treatments, was there any discernible reduction in treatments or costs. We should be cautious about generalising these findings, since most of the patients studied retained their decision-making capacity through their declining state of health and in only three cases did discussion of treatment decisions call on the advance directive. There are plainly limitations in a single static directive based on a list of procedures and a simple quality of life judgment. Schneiderman and colleagues conclude that only if the document stimulates discussion and communication between patients and doctors will current enthusiasm for advance directives be justified. The study was conducted partly in the context of cost containment. Since most patients who execute advance directives opt for less of the costly hightechnology treatment often used in the terminal phases of illness, it is argued that such directives provide an ethical means to limit costs. However, financial conflicts of interest may arise, especially if institutions are tempted to use such directives to meet their economic goals. Patients who are poverty stricken, illiterate, or unaware of the precise meaning of advance directives may be asked to make choices about which they have little understandable information. Advance directives must be part of a clinical process not an administrative one.1 What about surrogate decision makers? Under the existing US system, the patient nominates such a person in advance to make decisions which are in the patient’s best interest. We will need to know far more about the factors that can influence the judgments of proxy decision-makers." A recent development in some states is the statutory requirement in certain terminal conditions for the physician to identify a surrogate decision-maker from among the patient’s family and friends if the patient has not previously done So.4
1322
As the populace ages, a huge elderly population becomes a reality and the issue of withholding and withdrawing expensive forms of care will gain even more prominence. Advance directives are but one step in this process. J, Orentlicher D, Moss RJ. Advance directives on admission. JAMA 1991; 266: 402-05. 2. White ML, Fletcher JC. The patient self determination act: on balance, more help than hindrance. JAMA 1991; 266: 410-12. 3. Emanuel EJ, Emanuel LL. Living wills: past present and future. J Clin 1. LaPuma
Ethics 1990; 1: 9-19. 4. Menikoff JA, Sachs GA, Siegler M. Beyond advance directives: health care surrogate laws. N Engl J Med 1992; 327: 1165-69. 5. Kubler-Ross E. On death and dying. London: Tavistock, 1970. 6. Becker E. The denial of death. New York: Free Press, 1973. 7. Brett AS. Limitations of listing specific medical interventions in advance directives. JAMA 1991; 266: 825-28. 8. O’Boyle CA, McGee HM, Hickey A, et al. Individual quality of life in patients undergoing hip replacement. Lancet 1992; 339: 1088-91. 9. Cohen SR, Mount BM. Quality of life in terminal illness: defining and measuring subjective well-being in the dying. J Palliat Care 1992; 8: 40-45. 10. Schneiderman LJ, Kronick R, Kaplan RM, et al. Effects of offering advance directives on medical treatments and costs. Ann Intern Med 1992; 117: 599-606. 11. Epstein A. Using proxies to evaluate quality of life: can they provide valid information about patients’ health status and satisfaction with medical care? Med Care 1989; 27 (3S): S91-98.
Guinea
worm:
good
news
from
Ghana In
Ghana’s president, Flight Lieutenant Jerry Rawlings, first espoused the cause of
guinea
1988,
when
worm
(dracunculiasis) eradication, making
flying visits to endemic villages and persuading traditional chiefs to look at the vector cyclopoids swimming about in a glass of murky water, no doubt some of the country’s public health officials had wry smiles on their faces. Politicians’ enthusiasm for such issues tends not to last, and still less to have a significant and beneficial impact on disease control. Even the persuasion of US ex-president Jimmy Carter, another convert to the cause,l flanked on his visit by eminent advisers with distinguished service in the smallpox eradication campaign, left many observers sceptical-and the target of eradicating guinea worm by 1993 must have had them laughing up their sleeves. Guinea worm, however painful and debilitating,2 is not the killer that smallpox was, and is hardly the first priority of most African health workers. Moreover, its eradication will require a far higher degree of compliance and public participation than the singledose immunisation that defeated smallpox. Villagers will have to be persuaded to change their behaviour, filtering their water or changing their water source, and preventing their infected neighbours from contaminating surface sources. With a one-year incubation period and a tendency for many people exposed to infection to escape the disease,3there are many in West Africa who will not be easily convinced of the parasite’s transmission cycle and the need to interrupt it.
Surveillance, a prerequisite in any eradication effort,would also be far from easy. With no effective chemotherapy, there is little that a conventional health
facility can offer to patients which can mitigate their suffering, so they have little incentive to present themselves for treatment. Consequently, only a small proportion of cases can be detected without an active search. In the circumstances, the campaign launched by Fit Lt Rawlings was very successful, achieving a 31% drop in case numbers in the first year, with little more than a mass media campaign. By 1991, a volunteer had been chosen and trained in every endemic village in the country, to seek out cases, file a monthly surveillance report, offer health education, and distribute filter cloth. They reported not much more ..than half the numbers of cases found in the previous year’s case-search. One might have supposed this drop was due to less efficient case detection, were it not for the fact that the spot checks to validate the monthly surveillance system have been more numerous, more thorough, and with more positive results than those of the national case-searchers. The latest results from the Ghana Ministry of Health are especially exciting. The historical peak transmission season finished in July, so the total for 1992 should be less than 30 000 cases compared with nearly 180 000 cases in 1989. With annual reductions in the monthly incidence figures reaching 80%, guinea worm disease in Ghana seems to be well on the way to extinction. What is the secret of this success? External support (from several donors, led by USAID) has certainly helped, and an important element is a well-trained and dedicated cadre of health workers at district and regional level. A key factor is probably that the national coordinator of the programme is himself a regional medical officer and not an official in the Ministry of Health in Accra. This enables him to speak to his colleagues in other regions as one who understands the difficulties they face, and to develop strategies with them that are rooted in practical
experience. A recent example of the Ghanaians’ pragmatism their willingness to take on board a new and unorthodox surgical technique for extracting the worms before they emerge. It was developed by Dr B. L. Sharma, an Ayurvedic practitioner in Rajasthan, India, who had added minor surgery (learned in the vasectomy campaign) to his herbalist repertoire.5 Extraction prevents the suffering and the disease transmission that occur while the worm (60 cm long) gradually emerges from beneath the skin. It soon became clear that this approach also improved surveillance; people would come from miles around to have their worms extracted. After a study visit to India by two Ghanaians, UNICEF agreed to fly Dr Sharma to Ghana, where he trained 25 doctors and medical assistants in the method. They have since trained another 235, so worm extraction can now be offered at health facilities throughout the country’s endemic was
make
advance directive. A patient must make judgments about elaborate medical procedures and potential quality of life. Difficult clinical decisions compounded by diagnostic and prognostic uncertainties are made even more difficult when the patient’s preferences regarding very specific to
an
advance
EDITORIALS
Advance directives Improvements in life-sustaining technologies have focused attention on the dilemmas facing those who must decide about the application of such procedures. In the UK, the British Medical Association has given cautious approval to the introduction of advance directives; in the USA, the 1991 Patient Self Determination Act requires all hospitals, nursing homes, and home health agencies to advise patients of their rights to accept or refuse medical care and to execute an advance directive.1,2 This usually takes the form of a written instructional directive for end-of-life care ("living will") and/or the appointment of a proxy to make decisions in the event of the patient being unable to do so. Such directives are largely welcomed by physicians, patients, and their families because they rely on informed consent, extend patient autonomy, and reduce physician concerns about legal liability for actions carried out in good faith.12 One especially salient purpose of advance directives is to avoid recourse to the courts to resolve difficulties associated with decision-making for incapacitated patients such as those in a persistent vegetative stated The apparent simplicity of advance directives is deceptive and their use raises many questions. Reservations have been expressed about the meaning, reliability, durability, and portability of the documents.3In the USA there is a wide disparity between the large percentage of persons who indicate a desire to die without heroic measures and the small 4 percentage who have executed advance directives.4 For several reasons, such a document may prove difficult to sign. Patients may feel that signing is the psychological equivalent of an admission that they are giving up and are going to die soon, or that the directive will result in their receiving less treatment than they would desire. Kubler-Ross, among others, has described the complex psychological adjustments associated with terminal illness; the defence mechanisms we use when contemplating death in general and our own mortality in particular are well documented.6 Problems arise in eliciting the information required
interventions must also be taken into consideration. Listing of possible interventions may shift attention away from overall treatment goals and may lead to prescription of inappropriate medical care.Quality of life is a dynamic, multidimensional, subjective construct that changes with time and stated A simple sentence or two is unlikely to capture this complexity, especially in the context of dying, where issues such as transience and spiritual and existential meaning may be the most relevant to the individual.99 Schneiderman et apo have now shown, in a prospective randomised clinical trial, that execution of advance directives by patients with life-threatening illnesses had no significant positive or negative effect on the patients’ well-being or health status. Nor, although most patients chose to limit life-sustaining treatments, was there any discernible reduction in treatments or costs. We should be cautious about generalising these findings, since most of the patients studied retained their decision-making capacity through their declining state of health and in only three cases did discussion of treatment decisions call on the advance directive. There are plainly limitations in a single static directive based on a list of procedures and a simple quality of life judgment. Schneiderman and colleagues conclude that only if the document stimulates discussion and communication between patients and doctors will current enthusiasm for advance directives be justified. The study was conducted partly in the context of cost containment. Since most patients who execute advance directives opt for less of the costly hightechnology treatment often used in the terminal phases of illness, it is argued that such directives provide an ethical means to limit costs. However, financial conflicts of interest may arise, especially if institutions are tempted to use such directives to meet their economic goals. Patients who are poverty stricken, illiterate, or unaware of the precise meaning of advance directives may be asked to make choices about which they have little understandable information. Advance directives must be part of a clinical process not an administrative one.1 What about surrogate decision makers? Under the existing US system, the patient nominates such a person in advance to make decisions which are in the patient’s best interest. We will need to know far more about the factors that can influence the judgments of proxy decision-makers." A recent development in some states is the statutory requirement in certain terminal conditions for the physician to identify a surrogate decision-maker from among the patient’s family and friends if the patient has not previously done So.4
1322
As the populace ages, a huge elderly population becomes a reality and the issue of withholding and withdrawing expensive forms of care will gain even more prominence. Advance directives are but one step in this process. J, Orentlicher D, Moss RJ. Advance directives on admission. JAMA 1991; 266: 402-05. 2. White ML, Fletcher JC. The patient self determination act: on balance, more help than hindrance. JAMA 1991; 266: 410-12. 3. Emanuel EJ, Emanuel LL. Living wills: past present and future. J Clin 1. LaPuma
Ethics 1990; 1: 9-19. 4. Menikoff JA, Sachs GA, Siegler M. Beyond advance directives: health care surrogate laws. N Engl J Med 1992; 327: 1165-69. 5. Kubler-Ross E. On death and dying. London: Tavistock, 1970. 6. Becker E. The denial of death. New York: Free Press, 1973. 7. Brett AS. Limitations of listing specific medical interventions in advance directives. JAMA 1991; 266: 825-28. 8. O’Boyle CA, McGee HM, Hickey A, et al. Individual quality of life in patients undergoing hip replacement. Lancet 1992; 339: 1088-91. 9. Cohen SR, Mount BM. Quality of life in terminal illness: defining and measuring subjective well-being in the dying. J Palliat Care 1992; 8: 40-45. 10. Schneiderman LJ, Kronick R, Kaplan RM, et al. Effects of offering advance directives on medical treatments and costs. Ann Intern Med 1992; 117: 599-606. 11. Epstein A. Using proxies to evaluate quality of life: can they provide valid information about patients’ health status and satisfaction with medical care? Med Care 1989; 27 (3S): S91-98.
Guinea
worm:
good
news
from
Ghana In
Ghana’s president, Flight Lieutenant Jerry Rawlings, first espoused the cause of
guinea
1988,
when
worm
(dracunculiasis) eradication, making
flying visits to endemic villages and persuading traditional chiefs to look at the vector cyclopoids swimming about in a glass of murky water, no doubt some of the country’s public health officials had wry smiles on their faces. Politicians’ enthusiasm for such issues tends not to last, and still less to have a significant and beneficial impact on disease control. Even the persuasion of US ex-president Jimmy Carter, another convert to the cause,l flanked on his visit by eminent advisers with distinguished service in the smallpox eradication campaign, left many observers sceptical-and the target of eradicating guinea worm by 1993 must have had them laughing up their sleeves. Guinea worm, however painful and debilitating,2 is not the killer that smallpox was, and is hardly the first priority of most African health workers. Moreover, its eradication will require a far higher degree of compliance and public participation than the singledose immunisation that defeated smallpox. Villagers will have to be persuaded to change their behaviour, filtering their water or changing their water source, and preventing their infected neighbours from contaminating surface sources. With a one-year incubation period and a tendency for many people exposed to infection to escape the disease,3there are many in West Africa who will not be easily convinced of the parasite’s transmission cycle and the need to interrupt it.
Surveillance, a prerequisite in any eradication effort,would also be far from easy. With no effective chemotherapy, there is little that a conventional health
facility can offer to patients which can mitigate their suffering, so they have little incentive to present themselves for treatment. Consequently, only a small proportion of cases can be detected without an active search. In the circumstances, the campaign launched by Fit Lt Rawlings was very successful, achieving a 31% drop in case numbers in the first year, with little more than a mass media campaign. By 1991, a volunteer had been chosen and trained in every endemic village in the country, to seek out cases, file a monthly surveillance report, offer health education, and distribute filter cloth. They reported not much more ..than half the numbers of cases found in the previous year’s case-search. One might have supposed this drop was due to less efficient case detection, were it not for the fact that the spot checks to validate the monthly surveillance system have been more numerous, more thorough, and with more positive results than those of the national case-searchers. The latest results from the Ghana Ministry of Health are especially exciting. The historical peak transmission season finished in July, so the total for 1992 should be less than 30 000 cases compared with nearly 180 000 cases in 1989. With annual reductions in the monthly incidence figures reaching 80%, guinea worm disease in Ghana seems to be well on the way to extinction. What is the secret of this success? External support (from several donors, led by USAID) has certainly helped, and an important element is a well-trained and dedicated cadre of health workers at district and regional level. A key factor is probably that the national coordinator of the programme is himself a regional medical officer and not an official in the Ministry of Health in Accra. This enables him to speak to his colleagues in other regions as one who understands the difficulties they face, and to develop strategies with them that are rooted in practical
experience. A recent example of the Ghanaians’ pragmatism their willingness to take on board a new and unorthodox surgical technique for extracting the worms before they emerge. It was developed by Dr B. L. Sharma, an Ayurvedic practitioner in Rajasthan, India, who had added minor surgery (learned in the vasectomy campaign) to his herbalist repertoire.5 Extraction prevents the suffering and the disease transmission that occur while the worm (60 cm long) gradually emerges from beneath the skin. It soon became clear that this approach also improved surveillance; people would come from miles around to have their worms extracted. After a study visit to India by two Ghanaians, UNICEF agreed to fly Dr Sharma to Ghana, where he trained 25 doctors and medical assistants in the method. They have since trained another 235, so worm extraction can now be offered at health facilities throughout the country’s endemic was
