- Email: [email protected]
Health service changes in New Zealand
THE LANCET
SIR—Your March 15 editorial,1 calls for practitioners to recognise patients’ needs for, and rights to, information about complementary as well as conventional cancer treatments. Articulate and literate patients will always succeed in finding information that is in the public domain, whatever the views of their own practitioners. On behalf of all patients, particularly those who are less skilled at handling information, we endorse the call. We would, however, qualify it. Patients need accessible, timely, relevant, and appropriate information about cancer treatments. As a supplement to their interactions with medical teams, patients should have access to a range of texts: print, televisual, and computer-based. They should also be in a position to choose the information that best suits their purposes, skills, and preferences. The quality of such texts should be as carefully researched, and their development and provision as seriously funded as any treatment intervention. For as with orthodox oncology, not everything in cancer information is perfect. *Sally Tweddle, Nicholas James Cancer Research Campaign Institute for Cancer Studies, University of Birmingham, Clinical Research Block, Edgbaston, Birmingham B15 2TT, UK
1
Editorial. Lessons from antineoplaston. Lancet 1997; 349: 741.
Health service changes in New Zealand SIR—Your New Zealand correspondent, Sandra Coney, provides a novel and misleading interpretation of the move to more consistent, explicit prioritisation and booking systems (March 22, p 862)1. The omissions are telling. She omitted to say that for 3 years government policy, agreed with the regional health authorities (the purchasers of services), has been to replace waiting lists with booking systems and to assess clinical priority through open, transparent processes. In the past year, NZ$130 million of additional funds have been specifically dedicated to help regional health authorities achieve this policy priority. Nor does Coney say that the clinical priority assessment criteria that assist in this process are a guide only, and clinical judgment is ultimately what determines who is offered what kinds of services. The emphasis is on clinical assessment, not point scores, and this was clearly stated in the central region’s media releases: “We have told hospital doctors that they should not see the
Vol 349 • May 17, 1997
priority access criteria as rigid, and that we expect them to exercise their clinical judgement. We recognise that there are some circumstances where there should be discretion on clinical grounds, regardless of whether or not people meet the threshold. If there is a conflict between a person’s score and generally accepted clinical practice, then generally accepted clinical practice should prevail”. Nowhere in the letters sent to patients in the central region was there mention of not having enough points to qualify for treatment. The letters to general practitioners provided information on the overall assessment processes and context, supported by the clinical priority assessment results and advice on management options. The clinical priority assessment criteria that have been developed by the National Health Committee and the Regional Health Authorities working closely with clinicians and the public give a small weighting to threats to “ability to work, care for dependants, or live independently”, which can be addressed by the treatment under consideration: this is expressly not the same as “extra points are given if an individual is judged a productive member of society” as Coney misleadingly reports. What is clear is that people will no longer languish on waiting lists: those who are accepted for treatment are booked to receive it within 6 months. Those who are assessed as being outside the agreed criteria for treatment, and who do not have extenuating circumstances, are referred back to primary care. Should their condition or circumstance change, or the capacity of the publicly funded sector increase, patients are reassessed and where applicable booked for treatment. All this is open, transparent, and under continual review and refinement in the light of new evidence on effectiveness and greater understanding of communities’ values.2,3 This change represents a major culture shift and it does threaten some of the comfortable patterns that planners and purchasers and providers have settled into—so it would not be reasonable to expect everyone to enthusiastically embrace these changes. Many specialists work in private as well as public medicine, and patients’ uncertainty as to whether and when they will be treated is often cited as the reason that they seek private care: explicit prioritisation and booking systems might reduce private sector demand and therefore specialists’ incomes. The past pattern of provision has not been comfortable for patients, and, quite properly, that is being remedied. Lynette Jones National Health Committee, Ministry of Health, Manatu Hanora, P O Box 5013, Wellington, New Z ealand
1 2
3
Coney S. New Zealand demands “points” for treatment. Lancet 1997; 349: 862. Hadorn DC, Holmes AC. The New Zealand priority criteria project, part 1: overview. BMJ 1997; 314: 131–34. Hadorn DC, Holmes AC. The New Zealand priority criteria project, part 2: coronary artery bypass graft surgery. BMJ 1997; 314: 135–38.
Author’s reply SIR—The National Health Committee (formerly the Core Services Committee) is naturally defensive about its creation, the booking system—but there are inherent contradictions in what it says. Jones writes that one regional health authority (what about the other three?) told hospital doctors that clinical judgment must not be set aside in implementing the points system, yet the NHC’s seven criteria for assessing patient priority do not include clinical judgment. The NHC’s latest annual report acknowledges that clinicians argue that the threshold for accessing coronary artery bypass graft (35 points or more) is too high. In the words of the NHC, “the preferred clinical threshold is 25 points”. However, says the committee, the threshold has been set on the basis of “existing levels of funding”. Thus level of funding, rather than clinical assessment, is determining who gets treatment. Jones accuses specialists of selfinterest for objecting to aspects of the booking system, since many work in both the public and private sectors. I am not sure how she can claim that taking thousands of people off waiting lists will reduce private sector demand—I would have thought it would produce a bonanza for the private sector. Is she suggesting that those removed from waiting lists do not need or want treatment? As Geoffrey Horne, professor of surgery at Wellington Clinical School, said recently: “I am not aware of anyone on my waiting list who is there for some kind of recreation”. In any case, the critics include general practitioners and academics who have no such pecuniary interest in the new system. Jones labours the point that patients want explicitness and certainty. I would have thought that what patients actually want is treatment. By contrast with this call for transparency, Jones says that patients in the central region were not told they did not have enough points to qualify for treatment, rather, their general practitioners were told: this is not in keeping with the provisions of the recently enacted Code of Health and Disability Services Consumers’ Rights which says that consumers have a “right to be fully informed”. Ironically, in last year’s annual report, the NHC cited the Code as reinforcing the need for
1481
THE LANCET
“transparency” in health providers’ dealings with the public, and specifically recommended to the Minister that “in order to ensure the widest possible understanding of the services to be publicly funded, openness or transparency, ie honest disclosure of information pertinent to decisions, and the basis and reasoning behind such decisions, should be part of the operating environment for the health and disability sector”. The NHC’s booking system is very new. Time alone will tell whether it is indeed more “comfortable” for patients.
1
Sandra Coney
Programmed bone-marrow donor for a leukaemic sibling, 10 years on
P O Box 46148, Herne Bay, Auckland, New Z ealand
1
National Advisory Committee on Health and Disability. Fifth annual report, 1996: December: 15.
Legal aspects of dementia SIR—In his review of the legal aspects of dementia (March 29, p 948)1 Dickens writes, “Involuntary detention is legally unjustifiable simply to improve demented patients’ circumstances”. Unfortunately, this is not the current situation in the UK. Section 47 of the 1948 National Assistance Act allows removal and detention of a person, in their own interests, if they: “(a) are suffering from grave chronic disease, or being aged, infirm or physically incapacitated, are living in unsanitary conditions, and (b) are unable to devote to themselves, and are not receiving from other persons, proper care and attention”.2 This overtly paternalistic piece of legislation is used to relocate more than 100 people a year in England and Wales3 alone, many of whom are older than 75 years and have dementia.4 This is an ancient law, which originates in the poor laws of the nineteenth century. In 1995, the Law Commission recommended the repeal of this law and drafted alternative legislation.5 However, their recommendations have not as yet been followed, and Section 47 remains in use in the UK. Dickens highlights the inadequacies of British law in this area. We should be ashamed of the continued presence in our statute books of this piece of legislation; we should be even more ashamed that it continues to be used. Adequate alternatives based on assessment of capacity are not available in the UK. New legislation should be introduced that incorporates the approaches described by Dickens and recommended by the Law Commission. Sarah Hobson School of Epidemiology and Health Sciences, Manchester University, Manchester M13 9PL, UK
1482
2 3
4
5
Dickens BM. Legal aspects of the dementias. Lancet 1997; 349: 948–50. 1948 National Assistance Act (40 Statutes 21) Section 47. Nair P, Mayberry JF. The compulsory removal of elderly people in England and Wales under Section 47 of the National Assistance Act and its 1951 Amendment. Age Ageing 1995; 24: 180–84. Wolfson P, Cohen M, Lindesay J, Murphy E. Section 47 and its use in mentally disordered people. J Pub Health Med 1990; 12: 9–14. Law Commission. Mental incapacity, Law. Com. Number 231. London: H M Stationery Office, 1995.
SIR—In April, 1987, we carried out a bone-marrow transplantation (BMT) from a programmed donor in a 6-year-old girl affected by Philadelphia positive chronic myeloid leukaemia. The child’s parents decided to have another child (the programmed donor) with the hope that the sibling would be HLA-compatible and could be a bonemarrow donor. This hope was fulfilled. We reported the success a few months later and also 1 year after the BMT.1,2 Today the recipient is a 16-year-old girl in excellent health, she attends school full time, and has recovered from chickenpox, which she had 2 years after the transplantation. Her brother, the programmed donor, is now 12-years-old, and is also in perfect health. The psychological evaluation of the interpersonal relationship between the siblings and the development of their personalities, was positive. In particular, the transplant has not generated dependencies. Thus, some of our initial ethical uncertainties about this transplant 1 turned out to be groundless. 10 years have not gone by in vain. In the meantime, a similar BMT from a child conceived to save a child has been done in USA and has raised positive bioethical interest. 3 Gluckman4 suggests that if faced with the need to transplant haemopoietic stem cells from a programmed donor, an umbilical-cord-blood-cell transplantation (UCBCT) may be preferred to BMT. Although UCBCT has its own burden of bioethical concerns which differ from those of BMT,5 it also achieves all the goals of a transplant of haemopoietic stem cells. Indeed, compared with BMT, UCBCT has some advantages—eg, ease and safety of collection without the trauma and risks associated with general anaesthesia required for marrow harvesting and prompt
availability with reduced time between donor identification and stem-cell transplantation. However, these advantages may also represent the limitations of UCBCT. One should not encourage parents to conceive a child for the sole purpose of obtaining a cord-blood donor, since this decision belittles the value of the individual to be born. Therefore, one should certainly never carry out HLA typing in utero, not only because of the risk of abortion linked to the procedure, but also because it would be despicable if this typing were used to dispose of a conceived child found to be HLA-incompatible with the sick patient. *Giuseppe Roberto Burgio, Luigi Nespoli, Fulvio Porta, Franco Locatelli *Department of Paediatrics, University of Pavia, IRCCS Policlinico San Matteo, 27100 Pavia, Italy; Department of Paediatrics, Ospedale Filippo Del Ponte, University of Varese, Varese; and Department of Paediatrics, Spedali Civili, University of Brescia, Brescia
1
2
3
4
5
Burgio GR, Nespoli L, Porta F. Programming of bone marrow donor for a leukaemic sibling. Lancet 1987; i: 1484–85. Burgio GR, Nespoli L, Porta F. Programming of bone marrow donor for a leukaemic sibling: one year on. Lancet 1988; i: 945. Jecker NS. Conceiving a child to save a child: reproductive and filial ethics. J Clin Ethics 1990; 1: 99–103. Gluckman E. European organization for a cord blood banking. Blood Cells 1994; 20: 601–08. Burgio GR, Locatelli F. Transplant of bone marrow and cord blood hematopoietic stem cells in pediatric age, revisited according to the fundamental principles of bioethics. Bone Marrow Tranplant (in press).
A nickname in The Lancet SIR—Although as a rule nothing in The Lancet is anonymous and pseudonyms are not allowed (the only exceptions being anonynimity to protect the patient, not the author), The Lancet did, inadvertently I suppose, recently identify (posthumously) an author with his pseudonym (March 29, p 962).1 The painter’s name is Paolo Caliari (Verona 1528–Venice 1588) universally known by his nickname Il Veronese (or sometimes Paolo Veronese). Bruno Simini Via del Campaccio, 230 Gattaiola, 55050 Lucca, Italy
1
The Resurrection. Lancet 1997; 349: 962.
DEPARTMENT OF ERROR Risks of non-sedating antihistamines—In this letter by M Lindquist and I R Edwards, the actual number of reports of total rate and rhythm disorders for cetirizine should have been 59, and not 15 as shown in the figure.
Vol 349 • May 17, 1997
SIR—Your March 15 editorial,1 calls for practitioners to recognise patients’ needs for, and rights to, information about complementary as well as conventional cancer treatments. Articulate and literate patients will always succeed in finding information that is in the public domain, whatever the views of their own practitioners. On behalf of all patients, particularly those who are less skilled at handling information, we endorse the call. We would, however, qualify it. Patients need accessible, timely, relevant, and appropriate information about cancer treatments. As a supplement to their interactions with medical teams, patients should have access to a range of texts: print, televisual, and computer-based. They should also be in a position to choose the information that best suits their purposes, skills, and preferences. The quality of such texts should be as carefully researched, and their development and provision as seriously funded as any treatment intervention. For as with orthodox oncology, not everything in cancer information is perfect. *Sally Tweddle, Nicholas James Cancer Research Campaign Institute for Cancer Studies, University of Birmingham, Clinical Research Block, Edgbaston, Birmingham B15 2TT, UK
1
Editorial. Lessons from antineoplaston. Lancet 1997; 349: 741.
Health service changes in New Zealand SIR—Your New Zealand correspondent, Sandra Coney, provides a novel and misleading interpretation of the move to more consistent, explicit prioritisation and booking systems (March 22, p 862)1. The omissions are telling. She omitted to say that for 3 years government policy, agreed with the regional health authorities (the purchasers of services), has been to replace waiting lists with booking systems and to assess clinical priority through open, transparent processes. In the past year, NZ$130 million of additional funds have been specifically dedicated to help regional health authorities achieve this policy priority. Nor does Coney say that the clinical priority assessment criteria that assist in this process are a guide only, and clinical judgment is ultimately what determines who is offered what kinds of services. The emphasis is on clinical assessment, not point scores, and this was clearly stated in the central region’s media releases: “We have told hospital doctors that they should not see the
Vol 349 • May 17, 1997
priority access criteria as rigid, and that we expect them to exercise their clinical judgement. We recognise that there are some circumstances where there should be discretion on clinical grounds, regardless of whether or not people meet the threshold. If there is a conflict between a person’s score and generally accepted clinical practice, then generally accepted clinical practice should prevail”. Nowhere in the letters sent to patients in the central region was there mention of not having enough points to qualify for treatment. The letters to general practitioners provided information on the overall assessment processes and context, supported by the clinical priority assessment results and advice on management options. The clinical priority assessment criteria that have been developed by the National Health Committee and the Regional Health Authorities working closely with clinicians and the public give a small weighting to threats to “ability to work, care for dependants, or live independently”, which can be addressed by the treatment under consideration: this is expressly not the same as “extra points are given if an individual is judged a productive member of society” as Coney misleadingly reports. What is clear is that people will no longer languish on waiting lists: those who are accepted for treatment are booked to receive it within 6 months. Those who are assessed as being outside the agreed criteria for treatment, and who do not have extenuating circumstances, are referred back to primary care. Should their condition or circumstance change, or the capacity of the publicly funded sector increase, patients are reassessed and where applicable booked for treatment. All this is open, transparent, and under continual review and refinement in the light of new evidence on effectiveness and greater understanding of communities’ values.2,3 This change represents a major culture shift and it does threaten some of the comfortable patterns that planners and purchasers and providers have settled into—so it would not be reasonable to expect everyone to enthusiastically embrace these changes. Many specialists work in private as well as public medicine, and patients’ uncertainty as to whether and when they will be treated is often cited as the reason that they seek private care: explicit prioritisation and booking systems might reduce private sector demand and therefore specialists’ incomes. The past pattern of provision has not been comfortable for patients, and, quite properly, that is being remedied. Lynette Jones National Health Committee, Ministry of Health, Manatu Hanora, P O Box 5013, Wellington, New Z ealand
1 2
3
Coney S. New Zealand demands “points” for treatment. Lancet 1997; 349: 862. Hadorn DC, Holmes AC. The New Zealand priority criteria project, part 1: overview. BMJ 1997; 314: 131–34. Hadorn DC, Holmes AC. The New Zealand priority criteria project, part 2: coronary artery bypass graft surgery. BMJ 1997; 314: 135–38.
Author’s reply SIR—The National Health Committee (formerly the Core Services Committee) is naturally defensive about its creation, the booking system—but there are inherent contradictions in what it says. Jones writes that one regional health authority (what about the other three?) told hospital doctors that clinical judgment must not be set aside in implementing the points system, yet the NHC’s seven criteria for assessing patient priority do not include clinical judgment. The NHC’s latest annual report acknowledges that clinicians argue that the threshold for accessing coronary artery bypass graft (35 points or more) is too high. In the words of the NHC, “the preferred clinical threshold is 25 points”. However, says the committee, the threshold has been set on the basis of “existing levels of funding”. Thus level of funding, rather than clinical assessment, is determining who gets treatment. Jones accuses specialists of selfinterest for objecting to aspects of the booking system, since many work in both the public and private sectors. I am not sure how she can claim that taking thousands of people off waiting lists will reduce private sector demand—I would have thought it would produce a bonanza for the private sector. Is she suggesting that those removed from waiting lists do not need or want treatment? As Geoffrey Horne, professor of surgery at Wellington Clinical School, said recently: “I am not aware of anyone on my waiting list who is there for some kind of recreation”. In any case, the critics include general practitioners and academics who have no such pecuniary interest in the new system. Jones labours the point that patients want explicitness and certainty. I would have thought that what patients actually want is treatment. By contrast with this call for transparency, Jones says that patients in the central region were not told they did not have enough points to qualify for treatment, rather, their general practitioners were told: this is not in keeping with the provisions of the recently enacted Code of Health and Disability Services Consumers’ Rights which says that consumers have a “right to be fully informed”. Ironically, in last year’s annual report, the NHC cited the Code as reinforcing the need for
1481
THE LANCET
“transparency” in health providers’ dealings with the public, and specifically recommended to the Minister that “in order to ensure the widest possible understanding of the services to be publicly funded, openness or transparency, ie honest disclosure of information pertinent to decisions, and the basis and reasoning behind such decisions, should be part of the operating environment for the health and disability sector”. The NHC’s booking system is very new. Time alone will tell whether it is indeed more “comfortable” for patients.
1
Sandra Coney
Programmed bone-marrow donor for a leukaemic sibling, 10 years on
P O Box 46148, Herne Bay, Auckland, New Z ealand
1
National Advisory Committee on Health and Disability. Fifth annual report, 1996: December: 15.
Legal aspects of dementia SIR—In his review of the legal aspects of dementia (March 29, p 948)1 Dickens writes, “Involuntary detention is legally unjustifiable simply to improve demented patients’ circumstances”. Unfortunately, this is not the current situation in the UK. Section 47 of the 1948 National Assistance Act allows removal and detention of a person, in their own interests, if they: “(a) are suffering from grave chronic disease, or being aged, infirm or physically incapacitated, are living in unsanitary conditions, and (b) are unable to devote to themselves, and are not receiving from other persons, proper care and attention”.2 This overtly paternalistic piece of legislation is used to relocate more than 100 people a year in England and Wales3 alone, many of whom are older than 75 years and have dementia.4 This is an ancient law, which originates in the poor laws of the nineteenth century. In 1995, the Law Commission recommended the repeal of this law and drafted alternative legislation.5 However, their recommendations have not as yet been followed, and Section 47 remains in use in the UK. Dickens highlights the inadequacies of British law in this area. We should be ashamed of the continued presence in our statute books of this piece of legislation; we should be even more ashamed that it continues to be used. Adequate alternatives based on assessment of capacity are not available in the UK. New legislation should be introduced that incorporates the approaches described by Dickens and recommended by the Law Commission. Sarah Hobson School of Epidemiology and Health Sciences, Manchester University, Manchester M13 9PL, UK
1482
2 3
4
5
Dickens BM. Legal aspects of the dementias. Lancet 1997; 349: 948–50. 1948 National Assistance Act (40 Statutes 21) Section 47. Nair P, Mayberry JF. The compulsory removal of elderly people in England and Wales under Section 47 of the National Assistance Act and its 1951 Amendment. Age Ageing 1995; 24: 180–84. Wolfson P, Cohen M, Lindesay J, Murphy E. Section 47 and its use in mentally disordered people. J Pub Health Med 1990; 12: 9–14. Law Commission. Mental incapacity, Law. Com. Number 231. London: H M Stationery Office, 1995.
SIR—In April, 1987, we carried out a bone-marrow transplantation (BMT) from a programmed donor in a 6-year-old girl affected by Philadelphia positive chronic myeloid leukaemia. The child’s parents decided to have another child (the programmed donor) with the hope that the sibling would be HLA-compatible and could be a bonemarrow donor. This hope was fulfilled. We reported the success a few months later and also 1 year after the BMT.1,2 Today the recipient is a 16-year-old girl in excellent health, she attends school full time, and has recovered from chickenpox, which she had 2 years after the transplantation. Her brother, the programmed donor, is now 12-years-old, and is also in perfect health. The psychological evaluation of the interpersonal relationship between the siblings and the development of their personalities, was positive. In particular, the transplant has not generated dependencies. Thus, some of our initial ethical uncertainties about this transplant 1 turned out to be groundless. 10 years have not gone by in vain. In the meantime, a similar BMT from a child conceived to save a child has been done in USA and has raised positive bioethical interest. 3 Gluckman4 suggests that if faced with the need to transplant haemopoietic stem cells from a programmed donor, an umbilical-cord-blood-cell transplantation (UCBCT) may be preferred to BMT. Although UCBCT has its own burden of bioethical concerns which differ from those of BMT,5 it also achieves all the goals of a transplant of haemopoietic stem cells. Indeed, compared with BMT, UCBCT has some advantages—eg, ease and safety of collection without the trauma and risks associated with general anaesthesia required for marrow harvesting and prompt
availability with reduced time between donor identification and stem-cell transplantation. However, these advantages may also represent the limitations of UCBCT. One should not encourage parents to conceive a child for the sole purpose of obtaining a cord-blood donor, since this decision belittles the value of the individual to be born. Therefore, one should certainly never carry out HLA typing in utero, not only because of the risk of abortion linked to the procedure, but also because it would be despicable if this typing were used to dispose of a conceived child found to be HLA-incompatible with the sick patient. *Giuseppe Roberto Burgio, Luigi Nespoli, Fulvio Porta, Franco Locatelli *Department of Paediatrics, University of Pavia, IRCCS Policlinico San Matteo, 27100 Pavia, Italy; Department of Paediatrics, Ospedale Filippo Del Ponte, University of Varese, Varese; and Department of Paediatrics, Spedali Civili, University of Brescia, Brescia
1
2
3
4
5
Burgio GR, Nespoli L, Porta F. Programming of bone marrow donor for a leukaemic sibling. Lancet 1987; i: 1484–85. Burgio GR, Nespoli L, Porta F. Programming of bone marrow donor for a leukaemic sibling: one year on. Lancet 1988; i: 945. Jecker NS. Conceiving a child to save a child: reproductive and filial ethics. J Clin Ethics 1990; 1: 99–103. Gluckman E. European organization for a cord blood banking. Blood Cells 1994; 20: 601–08. Burgio GR, Locatelli F. Transplant of bone marrow and cord blood hematopoietic stem cells in pediatric age, revisited according to the fundamental principles of bioethics. Bone Marrow Tranplant (in press).
A nickname in The Lancet SIR—Although as a rule nothing in The Lancet is anonymous and pseudonyms are not allowed (the only exceptions being anonynimity to protect the patient, not the author), The Lancet did, inadvertently I suppose, recently identify (posthumously) an author with his pseudonym (March 29, p 962).1 The painter’s name is Paolo Caliari (Verona 1528–Venice 1588) universally known by his nickname Il Veronese (or sometimes Paolo Veronese). Bruno Simini Via del Campaccio, 230 Gattaiola, 55050 Lucca, Italy
1
The Resurrection. Lancet 1997; 349: 962.
DEPARTMENT OF ERROR Risks of non-sedating antihistamines—In this letter by M Lindquist and I R Edwards, the actual number of reports of total rate and rhythm disorders for cetirizine should have been 59, and not 15 as shown in the figure.
Vol 349 • May 17, 1997