- Email: [email protected]
On putting life first
family, friends, and lovers. Health Psychol 1995; 14: 6-12. Bayer R, Toomey KE. HIV prevention and the two faces of partner notification. Am J Public Health 1992; 82: 1158-63. North RL, Rothenberg KH. Partner notification and the threat of domestic violence against women with HIV infection. N Engl J Med infection to
7
8
1993; 329: 1194-96. 9
10
11
12
13
14
Landis SE, Schoenbach VJ, Weber DJ, et al. Results of a randomized trial of partner notification in cases of HIV infection in North Carolina. N Engl J Med 1992; 326: 101-06. US Centers for Disease Control and Prevention. Notification of syringe-sharing and sexual partners of HIV infected persons— Pennsylvania, 1993-1994. MMWR 1995; 44: 202-04. Pavia AT, Benyo M, Niler L, Risk I. Partner notification for control of HIV: results after two years of a statewide program in Utah. Am J Public Health 1993; 83: 1418-24. Hoffman RE, Spencer NE, Miller LA. Comparison of partner notification at anonymous and confidential HIV test sites in Colorado. J Acquir Immune Defic Syndr Hum Retrovirol 1995; 8: 406-10. Holtgrave DR, Valdiserri RO, Gerber AR, Hinman AR. Human immunodeficiency virus counseling, testing, referral, and partner notification services: a cost benefit analysis. Arch Intern Med 1993; 153: 1225-30. Green J, Kentish J. The right not to know HIV-test results. Lancet
1995; 345: 1508.
On
putting
life first
See page 356 Wherever we live, we all hope to escape as much as possible the suffering associated with the pain and fear of facing a terminal illness. Some individuals may well, as Asai and colleagues suggest in their report on Japanese physicians’ attitudes to life-sustaining treatment, ask their families to discontinue life-prolonging interventions if they have an incurable and painful terminal disease. However, when these same individuals learn that their mother or daughter has such a disease, they may make extraordinary efforts to see that the doctors do everything they can to sustain life as long as possible. A physician well want to discontinue may life-prolonging interventions for himself but to continue them on behalf of his patients. Physicians always carry out their responsibilities in a space delimited on the one hand by the patient’s desire to flee in the face of pain and on the other by the doctor’s inclination to extend the patient’s life as far as he is professionally able. How can physicians distinguish between cases in which the patient acts as a rational self-determining individual and those in which the patient is responding blindly to the fear of suffering or death? Can physicians avoid making such decisions? To resolve this dilemma, physicians in Japan usually take great care to inform families fully of the patient’s prognosis, and consult with them much more than with the patients themselves about treatment decisions. This attitude on the part of Japanese doctors may have some connection with family structure and religion. By way of illustration, 50% of elderly people in Japan live with their children compared with 10% in England and 15% in the USA and Germany. Family ties remain strong even after death, as is shown by the widely practised Buddhist custom of holding a ceremony for a dead person 1, 3, 7, 13, 17, 23, 33, and 50 years later. My concern is that, from analyses aiming to discern differences in attitudes of individual physicians in different countries, it remains difficult to identify the underlying concerns, values, and institutional constraints that influence medical practice. National patterns of
not only on professional styles of but also very much on the system of medical care, the medical tradition, and the family system. For example, heart transplants in Japan have not been done since 1968.’ By contrast, therapeutic abortions are very whereas in the USA they are highly common controversial and tied up with the politics of religion. For many patients in the terminal stages of an illness, concerns about maintaining quality of life may weigh more heavily than considerations regarding length of life. Some patients may want to know all about their disease in the belief that, if they know their prognosis, they will be better able to prepare for death. In Japan, however, physicians and families usually think that if patients know their prognosis, their inevitable sadness will prevent them from living out their remaining days fully. On this point I think both physicians’ and families’ attitudes are changing, albeit slowly. Certainly physicians in Japan should reconsider possibilities for protecting terminally ill patients from unnecessary suffering without necessarily relying on the blind use of life-prolonging technology. Nevertheless, it remains very difficult for physicians to decide when a patient’s disease can be regarded as "terminal". Are bed-ridden patients with advanced metastatic cancer automatically "terminal" when they may live for several years without any technological intervention? For patients who are dependent on technology to remain alive, medical opinions may differ on the advisability of suspending active treatment. One concern of Japanese physicians is that, if it becomes too easy to terminate the use of life-prolonging medical technology, either in the name of rational treatment of terminal illnesses or in the name of patient self-determination, this may lead to a gradual erosion of respect for the life of patients. An associated worry is that persons with incurable diseases such as severe mental disorders, degenerative neuromyelopathies, or AIDS will be less likely to receive medical care which would benefit them. A similar concern about maintaining a general sense of respect for human life and health may underlie several apparently disparate phenomena that may strike visitors to Japan as peculiar. One is the striking popular opposition to expanding the definition of legal death to include those whom physicians in other countries would diagnose as cases of brain death. Another is the remarkably long length of hospital stay in Japan. In 1990, there were 1-95 million hospital beds in Japan and the average length of stay was 44-9 days. These statistics may partly reflect the provision of unnecessary treatment in the name of the best interests of the patient. Health check-ups are also very popular in Japan: a recent estimate is that more than 20 million people annually have undergone general physical examinations. Physicians in Japan tend to think that the way to act in the best interests of a patient is to provide the best possible care at any stage of a disease and to promote good health before people become afflicted. Although many of these activities may not be directly efficacious, I cannot help wondering whether the general orientation towards life and health that underlies this attitude has some bearing on the generally high level of health and extremely long life expectancy of the Japanese population. Physicians elsewhere may wish to reflect on the
medical
practice depend
thinking
possibility
that
stopping
the
use
of
life-prolonging 327
technology for the terminally ill in the name of medical rationality or self-determination may, in the long run, lead to a lowering of respect for human health and life and lead indirectly to a rise in premature and unnecessary deaths. Kozo Tatara Department of Public Health, Osaka University Medical School, Osaka, Japan 1
Mizuno H. Brain death and organ Books, 1991.
Foreign
transplantation. Tokyo: Kinokuniya
aid and TB control
policy in Nepal
Next month, conferences in Paris (the scientific meeting of the International Union against Tuberculosis and Lung Disease) and Washington (The Challenge of Tuberculosis organised by The Lancet) will review the international efforts to reduce the burden of tuberculosis (TB) globally. In the late 1980s, the World Health Organization encouraged the introduction of short-course chemotherapy (SCC) in national programmes in the Indian subcontinent as an important step in trying to control tuberculosis. For SCC, three to four drugs (including rifampicin and pyrazinamide) are given over 6-9 months (up to half the duration of previously recommended regimens’). The policy to encourage introduction of SCC was partly a reaction to its adoption in the private sector in many areas without any subsequent monitoring. SCC had also been implemented successfully in national programmes elsewhere. Consequently, some international non-governmental organisations in Nepal that were undertaking TB control activities introduced SCC into their programmes. The Nepal national TB project has received considerable technical and financial support since 1987 from the Nepal-Japan technical cooperation project. The national TB project has introduced SCC into almost half of the country’s districts, but factors such as lack of supervision, inadequate training, and poor drug supply logistics severely limited its application. The problem of SCC drug provision (especially of rifampicin, the most expensive agent and the one least likely ever to be manufactured within Nepal) has been solved by a gift from the Japanese pharmaceutical industry of 3-4 years’ free rifampicin for the whole of the national TB project, the result of lobbying from the Japanese government’s aid agency and the Japanese national TB association. Distribution of the drugs has started in response to demands by some district health officers, but their supply has already been shown to be erratic, the result often being inadequate and intermittent therapy. The supply difficulties have raised concerns about the development of resistance to treatment: if multidrug resistance (MDRTB) should develop, the effectiveness of SCC will be severely diminished with no new drugs to replace it. Resistance is already encountered among TB patients in Nepal who have not received antituberculosis drugs before: 5-24% harbour organisms resistant to at least one
328
drug (primary resistance) and the proportion is higher in the Kathmandu valley.2 The problem of inappropriate SCC use leading to MDR-TB could be made even worse by the use of rifampicin as a single drug. Rifampicin will not be combined (ie, in the same tablet or capsule) with other antituberculosis drugs despite some evidence that use of combined drugs improves compliance and thereby reduces the likelihood of resistance. The Japanese pharmaceutical industry does not make combination therapy (for legal reasons) and is not willing to have its rifampicin used in formulations produced outside Japan. Attempts to change the form that this gift takes have been unsuccessful. Fears of an epidemic of MDR-TB have led to calls for SCC introduction to be restricted to districts where its use can be directly observed (directly observed therapy with SCC or DOTS).3 However, the introduction of a DOTS policy is likely to be slow, especially in districts not supported by a non-governmental organisation. How DOTS will be implemented in Nepal or whether it will improve the effectiveness of the TB control services is unclear. Meanwhile, the demand for SCC will probably remain high and the national TB project might not have sufficient influence to ensure that the central logistics division of the government health service distributes SCC drugs only to districts where SCC use can be directly observed. As a compromise, the rifampicin capsules are to be put into blister packs with the other SCC agents to encourage the use of all the drugs together. The packaging technology will have to be developed within Nepal and will be costly. Whether this strategy is an effective way of preventing resistance to rifampicin is uncertainrifampicin could easily be taken out of the packs and used for other conditions such as sexually transmitted diseases. Thus the provision of free SCC by the Japanese pharmaceutical industry is still seen as crucial for the development of TB control services in Nepal. However, this free rifampicin may well be distributed throughout the country before there is an adequate infrastructure to ensure its proper use. Consequently, resistance to rifampicin may be enhanced, and perhaps an epidemic of MDR-TB will follow-all this in a country that has an open border with India. The Japanese manufacturers should ensure that their investment in Nepal does not turn sour; the industry might end up being blamed for hastening the development of MDR-TB in a continent where the impact of tuberculosis is likely to increase
enormously.4 RJ
Fryatt
Health
Policy Unit,
London School of
Tropical
Medicine and
Hygiene,
London, UK 1 2 3 4
Chan SL. Chemotherapy of tuberculosis. In: Davies PDO, ed. Clinical tuberculosis. London: Chapman and Hall, 1994: 141-56. WHO and HM Government of Nepal. National tuberculosis programme review. Kathmandu: HMG Nepal, 1994. WHO tuberculosis section. Stop TB at the source: WHO report on the tuberculosis epidemic. Geneva: WHO, 1995. WHO. TB: a global emergency. World Health 1993; 4: 2-31.
7
8
1993; 329: 1194-96. 9
10
11
12
13
14
Landis SE, Schoenbach VJ, Weber DJ, et al. Results of a randomized trial of partner notification in cases of HIV infection in North Carolina. N Engl J Med 1992; 326: 101-06. US Centers for Disease Control and Prevention. Notification of syringe-sharing and sexual partners of HIV infected persons— Pennsylvania, 1993-1994. MMWR 1995; 44: 202-04. Pavia AT, Benyo M, Niler L, Risk I. Partner notification for control of HIV: results after two years of a statewide program in Utah. Am J Public Health 1993; 83: 1418-24. Hoffman RE, Spencer NE, Miller LA. Comparison of partner notification at anonymous and confidential HIV test sites in Colorado. J Acquir Immune Defic Syndr Hum Retrovirol 1995; 8: 406-10. Holtgrave DR, Valdiserri RO, Gerber AR, Hinman AR. Human immunodeficiency virus counseling, testing, referral, and partner notification services: a cost benefit analysis. Arch Intern Med 1993; 153: 1225-30. Green J, Kentish J. The right not to know HIV-test results. Lancet
1995; 345: 1508.
On
putting
life first
See page 356 Wherever we live, we all hope to escape as much as possible the suffering associated with the pain and fear of facing a terminal illness. Some individuals may well, as Asai and colleagues suggest in their report on Japanese physicians’ attitudes to life-sustaining treatment, ask their families to discontinue life-prolonging interventions if they have an incurable and painful terminal disease. However, when these same individuals learn that their mother or daughter has such a disease, they may make extraordinary efforts to see that the doctors do everything they can to sustain life as long as possible. A physician well want to discontinue may life-prolonging interventions for himself but to continue them on behalf of his patients. Physicians always carry out their responsibilities in a space delimited on the one hand by the patient’s desire to flee in the face of pain and on the other by the doctor’s inclination to extend the patient’s life as far as he is professionally able. How can physicians distinguish between cases in which the patient acts as a rational self-determining individual and those in which the patient is responding blindly to the fear of suffering or death? Can physicians avoid making such decisions? To resolve this dilemma, physicians in Japan usually take great care to inform families fully of the patient’s prognosis, and consult with them much more than with the patients themselves about treatment decisions. This attitude on the part of Japanese doctors may have some connection with family structure and religion. By way of illustration, 50% of elderly people in Japan live with their children compared with 10% in England and 15% in the USA and Germany. Family ties remain strong even after death, as is shown by the widely practised Buddhist custom of holding a ceremony for a dead person 1, 3, 7, 13, 17, 23, 33, and 50 years later. My concern is that, from analyses aiming to discern differences in attitudes of individual physicians in different countries, it remains difficult to identify the underlying concerns, values, and institutional constraints that influence medical practice. National patterns of
not only on professional styles of but also very much on the system of medical care, the medical tradition, and the family system. For example, heart transplants in Japan have not been done since 1968.’ By contrast, therapeutic abortions are very whereas in the USA they are highly common controversial and tied up with the politics of religion. For many patients in the terminal stages of an illness, concerns about maintaining quality of life may weigh more heavily than considerations regarding length of life. Some patients may want to know all about their disease in the belief that, if they know their prognosis, they will be better able to prepare for death. In Japan, however, physicians and families usually think that if patients know their prognosis, their inevitable sadness will prevent them from living out their remaining days fully. On this point I think both physicians’ and families’ attitudes are changing, albeit slowly. Certainly physicians in Japan should reconsider possibilities for protecting terminally ill patients from unnecessary suffering without necessarily relying on the blind use of life-prolonging technology. Nevertheless, it remains very difficult for physicians to decide when a patient’s disease can be regarded as "terminal". Are bed-ridden patients with advanced metastatic cancer automatically "terminal" when they may live for several years without any technological intervention? For patients who are dependent on technology to remain alive, medical opinions may differ on the advisability of suspending active treatment. One concern of Japanese physicians is that, if it becomes too easy to terminate the use of life-prolonging medical technology, either in the name of rational treatment of terminal illnesses or in the name of patient self-determination, this may lead to a gradual erosion of respect for the life of patients. An associated worry is that persons with incurable diseases such as severe mental disorders, degenerative neuromyelopathies, or AIDS will be less likely to receive medical care which would benefit them. A similar concern about maintaining a general sense of respect for human life and health may underlie several apparently disparate phenomena that may strike visitors to Japan as peculiar. One is the striking popular opposition to expanding the definition of legal death to include those whom physicians in other countries would diagnose as cases of brain death. Another is the remarkably long length of hospital stay in Japan. In 1990, there were 1-95 million hospital beds in Japan and the average length of stay was 44-9 days. These statistics may partly reflect the provision of unnecessary treatment in the name of the best interests of the patient. Health check-ups are also very popular in Japan: a recent estimate is that more than 20 million people annually have undergone general physical examinations. Physicians in Japan tend to think that the way to act in the best interests of a patient is to provide the best possible care at any stage of a disease and to promote good health before people become afflicted. Although many of these activities may not be directly efficacious, I cannot help wondering whether the general orientation towards life and health that underlies this attitude has some bearing on the generally high level of health and extremely long life expectancy of the Japanese population. Physicians elsewhere may wish to reflect on the
medical
practice depend
thinking
possibility
that
stopping
the
use
of
life-prolonging 327
technology for the terminally ill in the name of medical rationality or self-determination may, in the long run, lead to a lowering of respect for human health and life and lead indirectly to a rise in premature and unnecessary deaths. Kozo Tatara Department of Public Health, Osaka University Medical School, Osaka, Japan 1
Mizuno H. Brain death and organ Books, 1991.
Foreign
transplantation. Tokyo: Kinokuniya
aid and TB control
policy in Nepal
Next month, conferences in Paris (the scientific meeting of the International Union against Tuberculosis and Lung Disease) and Washington (The Challenge of Tuberculosis organised by The Lancet) will review the international efforts to reduce the burden of tuberculosis (TB) globally. In the late 1980s, the World Health Organization encouraged the introduction of short-course chemotherapy (SCC) in national programmes in the Indian subcontinent as an important step in trying to control tuberculosis. For SCC, three to four drugs (including rifampicin and pyrazinamide) are given over 6-9 months (up to half the duration of previously recommended regimens’). The policy to encourage introduction of SCC was partly a reaction to its adoption in the private sector in many areas without any subsequent monitoring. SCC had also been implemented successfully in national programmes elsewhere. Consequently, some international non-governmental organisations in Nepal that were undertaking TB control activities introduced SCC into their programmes. The Nepal national TB project has received considerable technical and financial support since 1987 from the Nepal-Japan technical cooperation project. The national TB project has introduced SCC into almost half of the country’s districts, but factors such as lack of supervision, inadequate training, and poor drug supply logistics severely limited its application. The problem of SCC drug provision (especially of rifampicin, the most expensive agent and the one least likely ever to be manufactured within Nepal) has been solved by a gift from the Japanese pharmaceutical industry of 3-4 years’ free rifampicin for the whole of the national TB project, the result of lobbying from the Japanese government’s aid agency and the Japanese national TB association. Distribution of the drugs has started in response to demands by some district health officers, but their supply has already been shown to be erratic, the result often being inadequate and intermittent therapy. The supply difficulties have raised concerns about the development of resistance to treatment: if multidrug resistance (MDRTB) should develop, the effectiveness of SCC will be severely diminished with no new drugs to replace it. Resistance is already encountered among TB patients in Nepal who have not received antituberculosis drugs before: 5-24% harbour organisms resistant to at least one
328
drug (primary resistance) and the proportion is higher in the Kathmandu valley.2 The problem of inappropriate SCC use leading to MDR-TB could be made even worse by the use of rifampicin as a single drug. Rifampicin will not be combined (ie, in the same tablet or capsule) with other antituberculosis drugs despite some evidence that use of combined drugs improves compliance and thereby reduces the likelihood of resistance. The Japanese pharmaceutical industry does not make combination therapy (for legal reasons) and is not willing to have its rifampicin used in formulations produced outside Japan. Attempts to change the form that this gift takes have been unsuccessful. Fears of an epidemic of MDR-TB have led to calls for SCC introduction to be restricted to districts where its use can be directly observed (directly observed therapy with SCC or DOTS).3 However, the introduction of a DOTS policy is likely to be slow, especially in districts not supported by a non-governmental organisation. How DOTS will be implemented in Nepal or whether it will improve the effectiveness of the TB control services is unclear. Meanwhile, the demand for SCC will probably remain high and the national TB project might not have sufficient influence to ensure that the central logistics division of the government health service distributes SCC drugs only to districts where SCC use can be directly observed. As a compromise, the rifampicin capsules are to be put into blister packs with the other SCC agents to encourage the use of all the drugs together. The packaging technology will have to be developed within Nepal and will be costly. Whether this strategy is an effective way of preventing resistance to rifampicin is uncertainrifampicin could easily be taken out of the packs and used for other conditions such as sexually transmitted diseases. Thus the provision of free SCC by the Japanese pharmaceutical industry is still seen as crucial for the development of TB control services in Nepal. However, this free rifampicin may well be distributed throughout the country before there is an adequate infrastructure to ensure its proper use. Consequently, resistance to rifampicin may be enhanced, and perhaps an epidemic of MDR-TB will follow-all this in a country that has an open border with India. The Japanese manufacturers should ensure that their investment in Nepal does not turn sour; the industry might end up being blamed for hastening the development of MDR-TB in a continent where the impact of tuberculosis is likely to increase
enormously.4 RJ
Fryatt
Health
Policy Unit,
London School of
Tropical
Medicine and
Hygiene,
London, UK 1 2 3 4
Chan SL. Chemotherapy of tuberculosis. In: Davies PDO, ed. Clinical tuberculosis. London: Chapman and Hall, 1994: 141-56. WHO and HM Government of Nepal. National tuberculosis programme review. Kathmandu: HMG Nepal, 1994. WHO tuberculosis section. Stop TB at the source: WHO report on the tuberculosis epidemic. Geneva: WHO, 1995. WHO. TB: a global emergency. World Health 1993; 4: 2-31.