- Email: [email protected]
My turn and my right
Correspondence
when appropriate, treatment to allow a peaceful, dignified death. The bioethical issue here is a dearth of accessible appropriate health care rather than a surfeit of patient autonomy. I played a part in the development of General Comment 14 of the International Covenant on Economic, Social and Cultural Rights.
Peter Hall [email protected] Doctors for Human Rights, Abbots Langley WD5 0BE, UK 1 2 3
For JLAPUP see http://www. jlapressureulcerpartnership. co.uk/
1992
Caplan AL. Not my turn. Lancet 2012; 380: 968–69. Sokol DK. Is bioethics a bully? BMJ 2012; 345: e5802. United Nations. General comment no. 14. New York: UN, 2000. http://www.unhchr.ch/ tbs/doc.nsf/(symbol)/E.C.12.2000.4.En (accessed Sept 16, 2012).
Although a patient’s right to autonomy might be justifiably limited in rare circumstances, Arthur Caplan’s case fails to support this claim.1 First, forcing Mr Brennan to accept turning violates more than his autonomy: it also violates the principle of nonmaleficence by inducing pain.2 Although autonomy rights might be reasonably limited when a patient’s demands would harm other patients (eg, in matters of public health), we are given no information to suggest that this was the concern here. Autonomy might also be reasonably limited to avoid harm to professional integrity,3 but I am not persuaded that Mr Brennan’s physicians and nurses were worried about this. Neither discomfort with a patient’s choice nor fear of regulatory oversight justifies over-riding a patient’s wishes. A more ethical stance would have been to provide maximum support (emotional and otherwise) to the clinicians challenged with caring for this patient whose needs were extreme. We should avoid viewing cases like Mr Brennan’s as a dispute demanding winners and losers: mediation and clinical creativity might have uncovered an approach acceptable to all involved. For example, why couldn’t Mr Brennan’s pain be better managed
by giving extra doses of narcotics before turning? Considering alternative options might have identified a treatment plan that would have supported his autonomy while comforting both him and the caregivers responsible for his wellbeing. I declare that I have no conflicts of interest.
Mark D Siegel [email protected] Department of Internal Medicine, Pulmonary and Critical Care Section, Yale University School of Medicine, P O Box 208057, New Haven, CT 06520, USA 1 2
3
Caplan AL. Not my turn. Lancet 2012; 380: 968–69. Beauchamp TL, Childress JF. Principles of biomedical ethics, 6th edn. New York: Oxford University Press, 2009. Lantos J, Matlock AM, Wendler D. Clinician integrity and limits to patient autonomy. JAMA 2011; 305: 495–99.
Arthur Caplan1 is obviously correct that the value of autonomy has its limits and, more specifically, that if “a patient who refuses to be turned [thereby] imperils the safety or wellbeing of other patients then his autonomy ought to be limited accordingly”. However, Prof Caplan does not make a convincing case that the particular patient he describes should have been turned or that he should have been discharged as a result of his refusal. This patient was isolated to spare other patients the stench of his rotting flesh. His not being turned did not endanger others. The nursing staff felt frustrated in not being able to provide basic care, but this does not constitute good grounds for over-riding a patient’s autonomous decision to refuse life-extending basic care that, in his competent judgment, is not in his interests. A turn is a good one if it advances the patient’s interests, not if it makes nurses feel better. We are told that the patient refused to be turned because the turning was too painful and because he “intensely disliked being so dependent”. If the patient’s aim was to hasten his death while minimising his suffering and dependency, then he could have refused hydration and requested
sedation (with or without turning). He would then have died much more quickly and less grotesquely. His wishes would have been respected at less cost to him and to his medical carers. I declare that I have no conflicts of interest.
David Benatar [email protected] Philosophy Department and Bioethics Centre, University of Cape Town, 7700 Cape Town, South Africa 1
Caplan AL. Not my turn. Lancet 2012; 380: 968–69.
Arthur Caplan1 raises the ethical dilemma of a bed-bound patient with pressure ulcers who requests that no one turn him over in his hospital bed. As the findings of the UK James Lind Alliance Pressure Ulcer Priority Setting Partnership (JLAPUP) confirm, the opening premise that this “simplest, mundane case” is in contrast to “complicated medical decisions that are riddled with doubt and uncertainty” is false. Pressure-ulcer prevention and treatment are areas of profound doubt and uncertainty. Pressure-relieving mattresses and wound dressings are classified as devices rather than medicinal products. The European regulatory focus is on safety assessment, viability, and competitiveness of devices rather than population effectiveness. This leaves clinical uncertainty about outcomes in clinical practice.2 Wound care remains something of an evidence wilderness, with systematic reviews of evidence revealing a predominance of small, underpowered, and methodologically flawed trials.3,4 It is a sector in which practice is reliant on custom, opinion, and marketing, and where systematic reviews are being portrayed as a means of rationing access and reducing choice.5 The ethics of patients’ involvement in treatment decisions includes involving patients in discussions of treatment uncertainty. Between January and May, 2012, JLAPUP asked patients, carers, and clinicians on what they would like to see further research or where www.thelancet.com Vol 380 December 8, 2012
they thought there was uncertainty about the best medical and nursing care in pressure-ulcer prevention and treatment. Nearly 1000 responses were gathered, including questions about the effectiveness of regular turning of patients and the best means of engaging patients in their own care. All intervention questions for which existing research does not provide a reliable or complete answer will be published on the NHS Evidence in the UK Database of Uncertainties about the Effects of Treatments (DUETs). I declare that I have no conflicts of interest.
Mary Madden [email protected] James Lind Alliance Pressure Ulcer Priority Setting Partnership, Department of Health Sciences, Area 2, Seebohm Rowntree Building, University of York, Heslington, York YO10 5DD, UK 1 2 3
4
5
Caplan AL. Not my turn. Lancet 2012; 380: 968–69. Cohen D, Billinglsey M. Europeans are left to their own devices. BMJ 2012; 342: d2748. Dumville JC, Soares MO, O’Meara S, Cullum N. Systematic review and mixed treatment comparison: dressings to heal diabetic foot ulcers. Diabetologia 2012; 55: 1902–10. Brölmann FE, Ubbink DT, Nelson EA, Munte K, van der Horst CMAM, Vermeulen H. Evidencebased decisions for local and systemic wound care. Br J Surg 2012; 99: 1172–83. Madden M. Alienating evidence based medicine vs. innovative medical device marketing: a report on the evidence debate at a wounds conference. Soc Sci Med 2012; 74: 2046–52.
Author’s reply The issue of how to manage a patient who does not wish to be turned and who has made a competent and informed decision to allow the resulting sepsis to kill him is, as these thoughtful letters show, disturbing clinically and ethically. Many of those writing seek to find a path towards palliative care in a setting outside the patient’s hospital as a way to resolve the challenge of honouring the patient’s wishes while preserving the ability of the staff to provide care. I have no issue with trying to persuade the patient to pursue this path. However, hospice and home palliative care were not readily available in the rural area where these events took place. Additionally, by the time his condition had deteriorated, the www.thelancet.com Vol 380 December 8, 2012
patient had no interest in being moved anywhere. Once he realised his fate involved nursing-home care and that his independent life at home was over, he vocally resigned himself to death where he was. Some writers argue that they do not see the patient’s decision to die of the consequences of infection related to skin breakdown as a threat or burden to the health of others. I disagree. There are more ways to imperil the care of others than transmission of harmful infection or violent behaviour. The manner of this patient’s death caused grave disruption to many of the patient’s direct care providers and to the morale of the entire facility. If the cost of the patient’s decision grossly interferes with the ability of the staff and facility to carry out its caring mission to provide high-quality care to others, I maintain that this could provide moral grounds for over-riding a competent patient’s autonomous choice. Mary Madden usefully reminds us that what seems simple in wound care is not, and that advances in wound and skin care raise and will continue to raise very difficult ethical questions. I hope my essay contributes to the awareness of the need to engage with those questions in a proactive and forthright manner. I declare that I have no conflicts of interest.
Arthur Caplan [email protected] Division of Medical Ethics, NYU Langone Medical Center, New York, NY 10016, USA
HIV epidemic out of control in Central African Republic The Central African Republic is in the midst of a major health and humanitarian crisis, related particularly to the HIV epidemic, that is largely out of control (Sept 15, p 964).1 The country has the highest adult HIV prevalence
in French-speaking sub-Saharan Africa,2 and one of the highest prevalences of herpes simplex virus type 2 (HSV-2) infection in the world, with more than 80% of HIV-infected adults co-infected. Such co-infection is a major cofactor of heterosexual HIV spread and worsening of AIDS.3 Co-infection with Mycobacterium tuberculosis or hepatitis viruses affect a third of patients.2 Furthermore, antiretroviral treatment (ART) failure has reached uncontainable proportions. The rates of treatment failure in the 15 000 individuals taking first-line ART, including 1400 children, are estimated at 30% in adults and 50% in children.4,5 More than a fifth (3000) of such patients have ARTresistant HIV strains, necessitating a therapeutic shift to second-line ART. The ability of the health system to handle ART failure is insufficient, with few qualified health workers, no second-line ART available, embryonic biological monitoring, and frequent and long-term nationwide shortages of medical supplies. The tragic situation of the HIV epidemic in the Central African Republic urgently requires specific advocacy as well as massive and adapted interventions. The national and international responses have so far not been proportionate to the issue at hand, and international donors are actually disengaging from health provision in the country.2 More effective strategies are needed to tackle this escalating HIV epidemic in the Central African Republic, and the resulting humanitarian disaster.
Corbis
Correspondence
For DUETs see http://www. library.nhs.uk/duets/
We declare that we have no conflicts of interest.
*Laurent Bélec, François-Xavier Mbopi-Kéou [email protected] Laboratoire de Virologie, Hôpital Européen Georges Pompidou, 75908 Paris Cedex 15, France (LB); Université Paris Descartes, Sorbonne Paris Cité, Paris, France (LB); International Society for Infectious Diseases, Brookline, MA, USA (F-XM-K); and Université de Yaoundé I, Yaoundé, Cameroon (F-XM-K)
1993
when appropriate, treatment to allow a peaceful, dignified death. The bioethical issue here is a dearth of accessible appropriate health care rather than a surfeit of patient autonomy. I played a part in the development of General Comment 14 of the International Covenant on Economic, Social and Cultural Rights.
Peter Hall [email protected] Doctors for Human Rights, Abbots Langley WD5 0BE, UK 1 2 3
For JLAPUP see http://www. jlapressureulcerpartnership. co.uk/
1992
Caplan AL. Not my turn. Lancet 2012; 380: 968–69. Sokol DK. Is bioethics a bully? BMJ 2012; 345: e5802. United Nations. General comment no. 14. New York: UN, 2000. http://www.unhchr.ch/ tbs/doc.nsf/(symbol)/E.C.12.2000.4.En (accessed Sept 16, 2012).
Although a patient’s right to autonomy might be justifiably limited in rare circumstances, Arthur Caplan’s case fails to support this claim.1 First, forcing Mr Brennan to accept turning violates more than his autonomy: it also violates the principle of nonmaleficence by inducing pain.2 Although autonomy rights might be reasonably limited when a patient’s demands would harm other patients (eg, in matters of public health), we are given no information to suggest that this was the concern here. Autonomy might also be reasonably limited to avoid harm to professional integrity,3 but I am not persuaded that Mr Brennan’s physicians and nurses were worried about this. Neither discomfort with a patient’s choice nor fear of regulatory oversight justifies over-riding a patient’s wishes. A more ethical stance would have been to provide maximum support (emotional and otherwise) to the clinicians challenged with caring for this patient whose needs were extreme. We should avoid viewing cases like Mr Brennan’s as a dispute demanding winners and losers: mediation and clinical creativity might have uncovered an approach acceptable to all involved. For example, why couldn’t Mr Brennan’s pain be better managed
by giving extra doses of narcotics before turning? Considering alternative options might have identified a treatment plan that would have supported his autonomy while comforting both him and the caregivers responsible for his wellbeing. I declare that I have no conflicts of interest.
Mark D Siegel [email protected] Department of Internal Medicine, Pulmonary and Critical Care Section, Yale University School of Medicine, P O Box 208057, New Haven, CT 06520, USA 1 2
3
Caplan AL. Not my turn. Lancet 2012; 380: 968–69. Beauchamp TL, Childress JF. Principles of biomedical ethics, 6th edn. New York: Oxford University Press, 2009. Lantos J, Matlock AM, Wendler D. Clinician integrity and limits to patient autonomy. JAMA 2011; 305: 495–99.
Arthur Caplan1 is obviously correct that the value of autonomy has its limits and, more specifically, that if “a patient who refuses to be turned [thereby] imperils the safety or wellbeing of other patients then his autonomy ought to be limited accordingly”. However, Prof Caplan does not make a convincing case that the particular patient he describes should have been turned or that he should have been discharged as a result of his refusal. This patient was isolated to spare other patients the stench of his rotting flesh. His not being turned did not endanger others. The nursing staff felt frustrated in not being able to provide basic care, but this does not constitute good grounds for over-riding a patient’s autonomous decision to refuse life-extending basic care that, in his competent judgment, is not in his interests. A turn is a good one if it advances the patient’s interests, not if it makes nurses feel better. We are told that the patient refused to be turned because the turning was too painful and because he “intensely disliked being so dependent”. If the patient’s aim was to hasten his death while minimising his suffering and dependency, then he could have refused hydration and requested
sedation (with or without turning). He would then have died much more quickly and less grotesquely. His wishes would have been respected at less cost to him and to his medical carers. I declare that I have no conflicts of interest.
David Benatar [email protected] Philosophy Department and Bioethics Centre, University of Cape Town, 7700 Cape Town, South Africa 1
Caplan AL. Not my turn. Lancet 2012; 380: 968–69.
Arthur Caplan1 raises the ethical dilemma of a bed-bound patient with pressure ulcers who requests that no one turn him over in his hospital bed. As the findings of the UK James Lind Alliance Pressure Ulcer Priority Setting Partnership (JLAPUP) confirm, the opening premise that this “simplest, mundane case” is in contrast to “complicated medical decisions that are riddled with doubt and uncertainty” is false. Pressure-ulcer prevention and treatment are areas of profound doubt and uncertainty. Pressure-relieving mattresses and wound dressings are classified as devices rather than medicinal products. The European regulatory focus is on safety assessment, viability, and competitiveness of devices rather than population effectiveness. This leaves clinical uncertainty about outcomes in clinical practice.2 Wound care remains something of an evidence wilderness, with systematic reviews of evidence revealing a predominance of small, underpowered, and methodologically flawed trials.3,4 It is a sector in which practice is reliant on custom, opinion, and marketing, and where systematic reviews are being portrayed as a means of rationing access and reducing choice.5 The ethics of patients’ involvement in treatment decisions includes involving patients in discussions of treatment uncertainty. Between January and May, 2012, JLAPUP asked patients, carers, and clinicians on what they would like to see further research or where www.thelancet.com Vol 380 December 8, 2012
they thought there was uncertainty about the best medical and nursing care in pressure-ulcer prevention and treatment. Nearly 1000 responses were gathered, including questions about the effectiveness of regular turning of patients and the best means of engaging patients in their own care. All intervention questions for which existing research does not provide a reliable or complete answer will be published on the NHS Evidence in the UK Database of Uncertainties about the Effects of Treatments (DUETs). I declare that I have no conflicts of interest.
Mary Madden [email protected] James Lind Alliance Pressure Ulcer Priority Setting Partnership, Department of Health Sciences, Area 2, Seebohm Rowntree Building, University of York, Heslington, York YO10 5DD, UK 1 2 3
4
5
Caplan AL. Not my turn. Lancet 2012; 380: 968–69. Cohen D, Billinglsey M. Europeans are left to their own devices. BMJ 2012; 342: d2748. Dumville JC, Soares MO, O’Meara S, Cullum N. Systematic review and mixed treatment comparison: dressings to heal diabetic foot ulcers. Diabetologia 2012; 55: 1902–10. Brölmann FE, Ubbink DT, Nelson EA, Munte K, van der Horst CMAM, Vermeulen H. Evidencebased decisions for local and systemic wound care. Br J Surg 2012; 99: 1172–83. Madden M. Alienating evidence based medicine vs. innovative medical device marketing: a report on the evidence debate at a wounds conference. Soc Sci Med 2012; 74: 2046–52.
Author’s reply The issue of how to manage a patient who does not wish to be turned and who has made a competent and informed decision to allow the resulting sepsis to kill him is, as these thoughtful letters show, disturbing clinically and ethically. Many of those writing seek to find a path towards palliative care in a setting outside the patient’s hospital as a way to resolve the challenge of honouring the patient’s wishes while preserving the ability of the staff to provide care. I have no issue with trying to persuade the patient to pursue this path. However, hospice and home palliative care were not readily available in the rural area where these events took place. Additionally, by the time his condition had deteriorated, the www.thelancet.com Vol 380 December 8, 2012
patient had no interest in being moved anywhere. Once he realised his fate involved nursing-home care and that his independent life at home was over, he vocally resigned himself to death where he was. Some writers argue that they do not see the patient’s decision to die of the consequences of infection related to skin breakdown as a threat or burden to the health of others. I disagree. There are more ways to imperil the care of others than transmission of harmful infection or violent behaviour. The manner of this patient’s death caused grave disruption to many of the patient’s direct care providers and to the morale of the entire facility. If the cost of the patient’s decision grossly interferes with the ability of the staff and facility to carry out its caring mission to provide high-quality care to others, I maintain that this could provide moral grounds for over-riding a competent patient’s autonomous choice. Mary Madden usefully reminds us that what seems simple in wound care is not, and that advances in wound and skin care raise and will continue to raise very difficult ethical questions. I hope my essay contributes to the awareness of the need to engage with those questions in a proactive and forthright manner. I declare that I have no conflicts of interest.
Arthur Caplan [email protected] Division of Medical Ethics, NYU Langone Medical Center, New York, NY 10016, USA
HIV epidemic out of control in Central African Republic The Central African Republic is in the midst of a major health and humanitarian crisis, related particularly to the HIV epidemic, that is largely out of control (Sept 15, p 964).1 The country has the highest adult HIV prevalence
in French-speaking sub-Saharan Africa,2 and one of the highest prevalences of herpes simplex virus type 2 (HSV-2) infection in the world, with more than 80% of HIV-infected adults co-infected. Such co-infection is a major cofactor of heterosexual HIV spread and worsening of AIDS.3 Co-infection with Mycobacterium tuberculosis or hepatitis viruses affect a third of patients.2 Furthermore, antiretroviral treatment (ART) failure has reached uncontainable proportions. The rates of treatment failure in the 15 000 individuals taking first-line ART, including 1400 children, are estimated at 30% in adults and 50% in children.4,5 More than a fifth (3000) of such patients have ARTresistant HIV strains, necessitating a therapeutic shift to second-line ART. The ability of the health system to handle ART failure is insufficient, with few qualified health workers, no second-line ART available, embryonic biological monitoring, and frequent and long-term nationwide shortages of medical supplies. The tragic situation of the HIV epidemic in the Central African Republic urgently requires specific advocacy as well as massive and adapted interventions. The national and international responses have so far not been proportionate to the issue at hand, and international donors are actually disengaging from health provision in the country.2 More effective strategies are needed to tackle this escalating HIV epidemic in the Central African Republic, and the resulting humanitarian disaster.
Corbis
Correspondence
For DUETs see http://www. library.nhs.uk/duets/
We declare that we have no conflicts of interest.
*Laurent Bélec, François-Xavier Mbopi-Kéou [email protected] Laboratoire de Virologie, Hôpital Européen Georges Pompidou, 75908 Paris Cedex 15, France (LB); Université Paris Descartes, Sorbonne Paris Cité, Paris, France (LB); International Society for Infectious Diseases, Brookline, MA, USA (F-XM-K); and Université de Yaoundé I, Yaoundé, Cameroon (F-XM-K)
1993