172
US
SiR,—Your Round the World correspondent (Dec 2, p 1325) cites a 103-year-old poem welcoming the "huddled masses" to America and then laments that the Department of Justice in 1987 extended the clause restricting entry into the US of some foreigners with "deadly infectious or contagious disease" to include those who are HIV-positive. The Department is complying with a policy established by the US Congress in 1929 requiring the limitation of entrants into the US who were "likely to become a public charge". The economic load of over ten million illegal immigrants and about half a million legal immigrants annually to the USA is staggering. Many of the newcomers quickly receive free health care, welfare, public housing, social, legal, and penal services, and education. Since 1984, counties in Calfifornia have been obliged by law to provide free routine inpatient services to illegal aliens, even when they could safely return for care to their home countries. I have observed that tourists use several ways to defray medical as proof that their health insurance coverages visits abroad, or purchase of travel or automobile insurance that includes coverage for health services abroad until a person can safely return to their home country. Your correspondent calls for "a highly visible protest and cancelling the San Francisco conference". A more mature approach would have been to see how many attendants at the conference, who, one assumes, belong to well-established institutions and organisations in other countries, are already covered under the health insurance of their home country for visits abroad, and for the organisers of the conference to offer umbrella coverage for the few who are not so covered. The Justice Department is to be applauded for its efforts to comply with the law and to minimise further strain on our health system at a time when the need for rationing health care is spreading from Oregon to other states in the USA because of the enormous cost.
expenses, such
applied
SURVIVAL BY CHANGE IN KARNOFSKY RATING
immigration controls
to
4770 North Cedar Avenue, Fresno, California 93726-1091, USA
ANDRE N. MINUTH
Financial help for terminally ill patients SIR,-In the UK people who need "a lot of help from another person because of physical or mental disability" and who are so severely disabled that they need "frequent attention in connection with their bodily functions" or "continual supervision throughout the day to avoid substantial dangers to themselves or others" receive financial help (attendance allowance) from the state, after a qualifying period of six months.l Because of this delay terminally ill patients are often excluded from receiving this benefit. The UK Government is proposing to waive this qualifying period for patients with terminal illness. To define this category of patient has proved difficult, however: the Department of Health’s definition in the new Social Security Bill,2 "a person is terminally ill at any time if at that time he suffers from a progressive disease and his death in consequence of that disease can reasonably be expected within 6 months", we think includes an unnecessary reminder of the short prognosis. Moreover, clinicians are usually over optimistic about patients’ survivaland may thus underestimate the appropriate period for receiving benefits. We have analysed data from a consecutive series of 487 cancer patients’ to establish whether survival was shortened in those with disability sufficient for attendance allowance. The Karnofsky index of mobility, which ranges from 100 (normal) to 0 (dead)/ was assessed at referral, and then every week. We believe that people with a score of 60 (requires occasional assistance, but can care for most needs) would not usually qualify for attendance allowance, whereas a score of 50 (needs considerable assistance and frequent care) would do so. 207 (43%) patients had Karnofsky ratings of 50 or below at referral, and the number of days until death was recorded for 189 (91%): the mean and median survivals were 33-9 and 19 days, respectively (SD 40-4, range 1-204). In 167 (34%) patients with ratings over 50 at referral, the ratings fell during the study. The table shows the mean and median days to death according to Karnofsky
*80= normal activity with effort, process
some
signs and symptoms;
10= moribund, fatal
progressing rapidly5
ratings. There is a clear trend of shorter survival with reducing mobility. Where ratings fell to 50 or below, 92-8% died within 3 months and 98-8% within 6 months. With a cut-off point at 60 or below, we found only a slightly higher proportion of patients lived longer: 91-7% died within 3 months and 97-7% within 6 months. 100 patients (21 %) did not have ratings below 50 at any stage: for most the average weekly rating did not fall below 50 until death. 13 patients were lost to follow-up. In a series of 42 cancer patients Evans and McCarthy3 showed that those with a score of 50 had a predicted survival of 24 days, and those with scores of 50 or less had survivals ranging between 3 and 70 days. In the USA Yates et aP showed that 104 cancer patients with reduced mobility had shortened survivals: only 1 patient with a score of 50 or less lived for longer than 6 months. Of our patients fewer than 2% who were sufficiently disabled to claim attendance allowance survived for more than 6 months. We welcome the Government’s recognition of the financial needs of terminally ill patients but we suggest that the prognosis estimate of 6 months should be removed from the definition of eligibility for attendance allowance. We thank the members of the support teams at Basingstoke Hospital, Bloomsbury, Charing Cross Hospital, St Thomas’ Hospital, and South Bromley Hospiscare. Help the Hospices provided financial support.
Department of Community Medicine, University College and Middlesex School of Medicine, London WC1 E 6EA, UK
IRENE HIGGINSON ANGELA WADE MARK MCCARTHY
1. Attendance allowance application form. London: Department of Health and Social Security, NI 205/July 1984. (Revisions m 1985 and 1986). 2. Social Security Bill 1990 (Bill 51). Clause 1, para 1. 3. Evans C, McCarthy M. Prognostic uncertainty in terminal care: can the Karnofsky index help? Lancet 1985; i: 1204-06. 4. Higginson I, McCarthy M. Evaluation of palliative care: steps to quality assurance. Palliative Med 1989; 3: 267-74. 5. Yates JW, Chalmer B, McKegney P. Evaluation of patients with cancer using the Karnofsky performance status. Cancer 1980; 45: 2220-24.
Closure of
psychiatric hospitals
colleagues’ article (Dec 23/30, p 1509) and accompanying editorial both clearly attack the idea of psychiatric care in the community and the associated closure of large psychiatric hospitals. Weller et al examine destitute people in London and show that 40% of them are seriously mentally ill. Other surveys have given similar results, including that by Priest in the late 1960soHow many of these destitute psychotic individuals had been discharged from psychiatric hospitals as part of the closure programme is not clear. It should be remembered that mentally ill people have always roamed the streets and, in the past, many spent SIR,-Dr Weller and
your
much of their lives in workhouses. I would not suggest that this is a satisfactory situation, but keeping mental hospitals intact is no better a solution than reopening the old workhouses. In your editorial you cite Penrose2 and claim that the increase in our prison population is directly related to the run-down of psychiatric hospitals. There is ample evidence that this is not a true picture. More offenders who are not mentally ill are being imprisoned and longer sentences are dispensed by the courts. I would also suggest that those who advocate a slowing down or halting of the programme of psychiatric hospital closures should carefully look at what they want to keep open. An examination of
173
Health Advisory Service reports on psychiatric hospitals reveals a sad story of overcrowding, squalor, social neglect, and personality destruction. If our psychiatric hospitals are to be kept functioning, vast amounts of money need to be spent on their fabric, their fumishing, and their staff*mg. Without this investment the quality of life within many of them is little, if any, better than life in a box under the arches. Community facilities and community care should be improved; something should be done about the dreadful plight of the homeless irrespective of their psychiatric condition. Mental hospitals, like workhouses, are not--and cannot be-the answer.
case for strengthening them3 not weaker than that for abolition? The frontier between clinical research and practice is frequently ill-defined and the former might reasonably be regarded as one element of the latter: in that case its supervision should be exercised by the patient through consent and the profession by peer review or medical audit, which should subject the obtaining of consent to a degree of scrutiny similar to that received by the other aspects of practice.
4 Clyde Park, Bnsto!BS66RR,UK
T. L. CHAMBERS
C, Fulford KWM, Parker C. Diversity in the practice of district ethics committees. Br Med J 1989; 299: 1437-39. 2. Bicknell J. Consent and people with mental handicap. Br Med J 1989; 299: 1176-77. 3. Marshall T, Moodie P. Research ethics committees re-visited. Br Med J 1989; 299: 1419-20. 1. Gilbert
Department of Psychiatry, Bevendean Hospital, Brighton BN2 4DS, UK
TONY WHITEHEAD
1 Priest RG. The Edinburgh homeless: a psychiatric survey. Am J Psychother 1971; 25: 191-213. 2. Penrose LS. Mental disease and crime: outline of a comparative study of European statistics. Br J Med Psychol 1939; 18: 1-15.
Gynaecologists’
eventually asks-is the
attitudes to abortion
SIR-WE feel that Mrs Savage and Dr Francome (Dec 2, p 1323) provide important information to be considered in the debate about the provision of abortion services. The discrepancy between the legal limit preferred by many consultants and the personal limit that they set is noteworthy. We feel that there is one important factor which explains this difference-namely, the need for gynaecologists to have the support of other hospital staff. Most midtrimester abortions are done by the use of prostaglandins given via the vaginal, extra-amniotic, or intraamniotic route. In most circumstances this procedure is done by junior doctors, and because the time course of the drug is unpredictable it is usually the nursing staff who are present at the time of abortion. It is therefore essential for the satisfactory functioning of the hospital termination service for the junior medical staff and nursing staff to support the activities of the consultant. Consultants often feel that it is easier to obtain the support of these other members of their team if they have a time limit less than that which they may personally prefer. The alternative technique for midtrimester abortion, dilatation and evacuation, may be unacceptable to theatre nurses and therefore prevent consultants doing terminations late in gestation. We feel that this emphasises the difficulties associated with attempts to provide a termination service within the bounds of routine gynaecological practice. If terminations could be done in specified units by teams of workers who are sympathetic to patients with unplanned pregnancies then we feel that the discrepancy between "legal limit" and "personal limit" highlighted by Savage and Francome would be partly overcome. Department of Obstetrics and Gynaecology, Northern General Hospital, Sheffield S5 7AU, UK
P. STEWART M. COHN
Decline of anti-HBs after hepatitis B vaccination and timing of revaccination SIR,-Dr Nommensen and colleagues (Oct 7, p 847) propose that the half-life of hepatitis B surface antibody (anti-HBs) after hepatitis B vaccination should be measured in every vaccinee, and that revaccination with a booster dose should take place when the anti-HBs concentration has reached a critical value of 10 IU/1. This proposal has drawn some critical comments in your correspondence columns (Nov 25, p 1273). We agree with Dr Gilks and his co-workers and Dr Gesemann and Dr Scheiermann that Nommensen and colleagues’ evaluation of the anti-HBs half-life by two anti-HBs measurements is inadequate because they presuppose that anti-HBs decreases exponentially following first-order kinetics. Anti-HBs generally declines very rapidly after the basic course of immunisation, but this decline then slows. 1-3 Thus, the decline of anti-HBs after hepatitis B vaccination is not a simple exponential function of time. The kinetics of anti-HBs concentration seem to be very similar to the fall-off in antibody titres after immunisation against tetanus and diphtheria for which Gottlieb et al4 developed a mathematical model. According to this model, the half-life of a specific antibody is a function of time, being initially very short and becoming longer with time after the last vaccination. The figure shows the anti-HBs decline in four individuals we followed for 4-5 years: antibody concentrations did not decline linearly. Therefore, we still believe that revaccinations should be timed according to the peak anti-HBs concentration. 1,2-5 Although we agree with Gilks et al and Dr Rawal and Dr Kurtz that there is now good evidence that the immunological memory achieved by hepatitis B vaccination protects against disease for at least some years after anti-HBs becomes undetectable," we do not think booster doses are unnecessary. They not only serve to maintain or re-establish neutralising antibodies, which protect against infection and disease, but also may "brush up" the immunological memory, although we do not know how long this memory lasts. However, because of the presence of an efficient immunological memory the revaccination schedule could be
Institutional paternalism SIR,-It is understandable that when some questionably ethical medical research comes to light society should reflexly declare, "never again" and establish supervising committees to prevent recurrence (such as your New Zealand correspondent, Ms Coney [Dec 16, p 1445], describes). Unfortunately, but not unexpectedly, the result may fall short of expectations, with inadequately functioning committees’ and the prospect that individual paternalism in the doctor/patient relationship will be superseded by that of institutional paternalism-directed in this case at both doctor and patient or research subject. In a recent example Bickne112 deplored medical paternalism in obtaining consent from the mentally handicapped, declaring that "nobody but the patient may give consent"; she then argued that people with a mental handicap should not be included in clinical trials. Add to this the time and paperwork consumed by research ethics committees and one
Decline of anti-HBs in four individuals after three doses of plasma-derived hepatitis B vaccine. Plotted
as
semilogarithmic graph.
US
SiR,—Your Round the World correspondent (Dec 2, p 1325) cites a 103-year-old poem welcoming the "huddled masses" to America and then laments that the Department of Justice in 1987 extended the clause restricting entry into the US of some foreigners with "deadly infectious or contagious disease" to include those who are HIV-positive. The Department is complying with a policy established by the US Congress in 1929 requiring the limitation of entrants into the US who were "likely to become a public charge". The economic load of over ten million illegal immigrants and about half a million legal immigrants annually to the USA is staggering. Many of the newcomers quickly receive free health care, welfare, public housing, social, legal, and penal services, and education. Since 1984, counties in Calfifornia have been obliged by law to provide free routine inpatient services to illegal aliens, even when they could safely return for care to their home countries. I have observed that tourists use several ways to defray medical as proof that their health insurance coverages visits abroad, or purchase of travel or automobile insurance that includes coverage for health services abroad until a person can safely return to their home country. Your correspondent calls for "a highly visible protest and cancelling the San Francisco conference". A more mature approach would have been to see how many attendants at the conference, who, one assumes, belong to well-established institutions and organisations in other countries, are already covered under the health insurance of their home country for visits abroad, and for the organisers of the conference to offer umbrella coverage for the few who are not so covered. The Justice Department is to be applauded for its efforts to comply with the law and to minimise further strain on our health system at a time when the need for rationing health care is spreading from Oregon to other states in the USA because of the enormous cost.
expenses, such
applied
SURVIVAL BY CHANGE IN KARNOFSKY RATING
immigration controls
to
4770 North Cedar Avenue, Fresno, California 93726-1091, USA
ANDRE N. MINUTH
Financial help for terminally ill patients SIR,-In the UK people who need "a lot of help from another person because of physical or mental disability" and who are so severely disabled that they need "frequent attention in connection with their bodily functions" or "continual supervision throughout the day to avoid substantial dangers to themselves or others" receive financial help (attendance allowance) from the state, after a qualifying period of six months.l Because of this delay terminally ill patients are often excluded from receiving this benefit. The UK Government is proposing to waive this qualifying period for patients with terminal illness. To define this category of patient has proved difficult, however: the Department of Health’s definition in the new Social Security Bill,2 "a person is terminally ill at any time if at that time he suffers from a progressive disease and his death in consequence of that disease can reasonably be expected within 6 months", we think includes an unnecessary reminder of the short prognosis. Moreover, clinicians are usually over optimistic about patients’ survivaland may thus underestimate the appropriate period for receiving benefits. We have analysed data from a consecutive series of 487 cancer patients’ to establish whether survival was shortened in those with disability sufficient for attendance allowance. The Karnofsky index of mobility, which ranges from 100 (normal) to 0 (dead)/ was assessed at referral, and then every week. We believe that people with a score of 60 (requires occasional assistance, but can care for most needs) would not usually qualify for attendance allowance, whereas a score of 50 (needs considerable assistance and frequent care) would do so. 207 (43%) patients had Karnofsky ratings of 50 or below at referral, and the number of days until death was recorded for 189 (91%): the mean and median survivals were 33-9 and 19 days, respectively (SD 40-4, range 1-204). In 167 (34%) patients with ratings over 50 at referral, the ratings fell during the study. The table shows the mean and median days to death according to Karnofsky
*80= normal activity with effort, process
some
signs and symptoms;
10= moribund, fatal
progressing rapidly5
ratings. There is a clear trend of shorter survival with reducing mobility. Where ratings fell to 50 or below, 92-8% died within 3 months and 98-8% within 6 months. With a cut-off point at 60 or below, we found only a slightly higher proportion of patients lived longer: 91-7% died within 3 months and 97-7% within 6 months. 100 patients (21 %) did not have ratings below 50 at any stage: for most the average weekly rating did not fall below 50 until death. 13 patients were lost to follow-up. In a series of 42 cancer patients Evans and McCarthy3 showed that those with a score of 50 had a predicted survival of 24 days, and those with scores of 50 or less had survivals ranging between 3 and 70 days. In the USA Yates et aP showed that 104 cancer patients with reduced mobility had shortened survivals: only 1 patient with a score of 50 or less lived for longer than 6 months. Of our patients fewer than 2% who were sufficiently disabled to claim attendance allowance survived for more than 6 months. We welcome the Government’s recognition of the financial needs of terminally ill patients but we suggest that the prognosis estimate of 6 months should be removed from the definition of eligibility for attendance allowance. We thank the members of the support teams at Basingstoke Hospital, Bloomsbury, Charing Cross Hospital, St Thomas’ Hospital, and South Bromley Hospiscare. Help the Hospices provided financial support.
Department of Community Medicine, University College and Middlesex School of Medicine, London WC1 E 6EA, UK
IRENE HIGGINSON ANGELA WADE MARK MCCARTHY
1. Attendance allowance application form. London: Department of Health and Social Security, NI 205/July 1984. (Revisions m 1985 and 1986). 2. Social Security Bill 1990 (Bill 51). Clause 1, para 1. 3. Evans C, McCarthy M. Prognostic uncertainty in terminal care: can the Karnofsky index help? Lancet 1985; i: 1204-06. 4. Higginson I, McCarthy M. Evaluation of palliative care: steps to quality assurance. Palliative Med 1989; 3: 267-74. 5. Yates JW, Chalmer B, McKegney P. Evaluation of patients with cancer using the Karnofsky performance status. Cancer 1980; 45: 2220-24.
Closure of
psychiatric hospitals
colleagues’ article (Dec 23/30, p 1509) and accompanying editorial both clearly attack the idea of psychiatric care in the community and the associated closure of large psychiatric hospitals. Weller et al examine destitute people in London and show that 40% of them are seriously mentally ill. Other surveys have given similar results, including that by Priest in the late 1960soHow many of these destitute psychotic individuals had been discharged from psychiatric hospitals as part of the closure programme is not clear. It should be remembered that mentally ill people have always roamed the streets and, in the past, many spent SIR,-Dr Weller and
your
much of their lives in workhouses. I would not suggest that this is a satisfactory situation, but keeping mental hospitals intact is no better a solution than reopening the old workhouses. In your editorial you cite Penrose2 and claim that the increase in our prison population is directly related to the run-down of psychiatric hospitals. There is ample evidence that this is not a true picture. More offenders who are not mentally ill are being imprisoned and longer sentences are dispensed by the courts. I would also suggest that those who advocate a slowing down or halting of the programme of psychiatric hospital closures should carefully look at what they want to keep open. An examination of
173
Health Advisory Service reports on psychiatric hospitals reveals a sad story of overcrowding, squalor, social neglect, and personality destruction. If our psychiatric hospitals are to be kept functioning, vast amounts of money need to be spent on their fabric, their fumishing, and their staff*mg. Without this investment the quality of life within many of them is little, if any, better than life in a box under the arches. Community facilities and community care should be improved; something should be done about the dreadful plight of the homeless irrespective of their psychiatric condition. Mental hospitals, like workhouses, are not--and cannot be-the answer.
case for strengthening them3 not weaker than that for abolition? The frontier between clinical research and practice is frequently ill-defined and the former might reasonably be regarded as one element of the latter: in that case its supervision should be exercised by the patient through consent and the profession by peer review or medical audit, which should subject the obtaining of consent to a degree of scrutiny similar to that received by the other aspects of practice.
4 Clyde Park, Bnsto!BS66RR,UK
T. L. CHAMBERS
C, Fulford KWM, Parker C. Diversity in the practice of district ethics committees. Br Med J 1989; 299: 1437-39. 2. Bicknell J. Consent and people with mental handicap. Br Med J 1989; 299: 1176-77. 3. Marshall T, Moodie P. Research ethics committees re-visited. Br Med J 1989; 299: 1419-20. 1. Gilbert
Department of Psychiatry, Bevendean Hospital, Brighton BN2 4DS, UK
TONY WHITEHEAD
1 Priest RG. The Edinburgh homeless: a psychiatric survey. Am J Psychother 1971; 25: 191-213. 2. Penrose LS. Mental disease and crime: outline of a comparative study of European statistics. Br J Med Psychol 1939; 18: 1-15.
Gynaecologists’
eventually asks-is the
attitudes to abortion
SIR-WE feel that Mrs Savage and Dr Francome (Dec 2, p 1323) provide important information to be considered in the debate about the provision of abortion services. The discrepancy between the legal limit preferred by many consultants and the personal limit that they set is noteworthy. We feel that there is one important factor which explains this difference-namely, the need for gynaecologists to have the support of other hospital staff. Most midtrimester abortions are done by the use of prostaglandins given via the vaginal, extra-amniotic, or intraamniotic route. In most circumstances this procedure is done by junior doctors, and because the time course of the drug is unpredictable it is usually the nursing staff who are present at the time of abortion. It is therefore essential for the satisfactory functioning of the hospital termination service for the junior medical staff and nursing staff to support the activities of the consultant. Consultants often feel that it is easier to obtain the support of these other members of their team if they have a time limit less than that which they may personally prefer. The alternative technique for midtrimester abortion, dilatation and evacuation, may be unacceptable to theatre nurses and therefore prevent consultants doing terminations late in gestation. We feel that this emphasises the difficulties associated with attempts to provide a termination service within the bounds of routine gynaecological practice. If terminations could be done in specified units by teams of workers who are sympathetic to patients with unplanned pregnancies then we feel that the discrepancy between "legal limit" and "personal limit" highlighted by Savage and Francome would be partly overcome. Department of Obstetrics and Gynaecology, Northern General Hospital, Sheffield S5 7AU, UK
P. STEWART M. COHN
Decline of anti-HBs after hepatitis B vaccination and timing of revaccination SIR,-Dr Nommensen and colleagues (Oct 7, p 847) propose that the half-life of hepatitis B surface antibody (anti-HBs) after hepatitis B vaccination should be measured in every vaccinee, and that revaccination with a booster dose should take place when the anti-HBs concentration has reached a critical value of 10 IU/1. This proposal has drawn some critical comments in your correspondence columns (Nov 25, p 1273). We agree with Dr Gilks and his co-workers and Dr Gesemann and Dr Scheiermann that Nommensen and colleagues’ evaluation of the anti-HBs half-life by two anti-HBs measurements is inadequate because they presuppose that anti-HBs decreases exponentially following first-order kinetics. Anti-HBs generally declines very rapidly after the basic course of immunisation, but this decline then slows. 1-3 Thus, the decline of anti-HBs after hepatitis B vaccination is not a simple exponential function of time. The kinetics of anti-HBs concentration seem to be very similar to the fall-off in antibody titres after immunisation against tetanus and diphtheria for which Gottlieb et al4 developed a mathematical model. According to this model, the half-life of a specific antibody is a function of time, being initially very short and becoming longer with time after the last vaccination. The figure shows the anti-HBs decline in four individuals we followed for 4-5 years: antibody concentrations did not decline linearly. Therefore, we still believe that revaccinations should be timed according to the peak anti-HBs concentration. 1,2-5 Although we agree with Gilks et al and Dr Rawal and Dr Kurtz that there is now good evidence that the immunological memory achieved by hepatitis B vaccination protects against disease for at least some years after anti-HBs becomes undetectable," we do not think booster doses are unnecessary. They not only serve to maintain or re-establish neutralising antibodies, which protect against infection and disease, but also may "brush up" the immunological memory, although we do not know how long this memory lasts. However, because of the presence of an efficient immunological memory the revaccination schedule could be
Institutional paternalism SIR,-It is understandable that when some questionably ethical medical research comes to light society should reflexly declare, "never again" and establish supervising committees to prevent recurrence (such as your New Zealand correspondent, Ms Coney [Dec 16, p 1445], describes). Unfortunately, but not unexpectedly, the result may fall short of expectations, with inadequately functioning committees’ and the prospect that individual paternalism in the doctor/patient relationship will be superseded by that of institutional paternalism-directed in this case at both doctor and patient or research subject. In a recent example Bickne112 deplored medical paternalism in obtaining consent from the mentally handicapped, declaring that "nobody but the patient may give consent"; she then argued that people with a mental handicap should not be included in clinical trials. Add to this the time and paperwork consumed by research ethics committees and one
Decline of anti-HBs in four individuals after three doses of plasma-derived hepatitis B vaccine. Plotted
as
semilogarithmic graph.
