Ethical Issues in Live-Donor Reimbursement Program.

Reimbursement of expenses and costs incurred by live organ donation is permitted in many countries to encourage donation and to protect the welfare of live donors. Potential ethical issues may arise with reimbursement programs and their implementation, which vary across countries. This paper discusses some ethical issues with live donor reimbursement to stimulate discussion on how to ethically enhance its implementation to improve outcomes for both donors and recipients. In addition, we will consider whether reimbursement should be supplemented with compensation for nonfinancial losses, such as pain and suffering, to encourage live donation.

Transplant tourism or international transplant medicine? A case for making the distinction.

Transplant tourism is routinely denounced by influential voices such as the World Health Organization, the Declaration of Istanbul and the Madrid Resolution as an unethical solution to worldwide organ shortages. Instead, it is suggested that national deceased donor schemes and multinational organ-sharing programs are the only acceptable avenues for addressing the organ shortage crisis. The present demand for self-sufficiency in organ supply responds to risks such as poor clinical outcomes, and exploitation of the poor through the various commercial practices of transplant tourism. However, opponents of transplant tourism say little about what governments should do to ensure that their citizens have real and comprehensive access to all forms of transplantation. To address this complex question, we describe a current practice of international transplant medicine in Singapore. It addresses salient concerns with transplant tourism and supports the principle of national self-sufficiency in organ supply, even as its health care system thrives and expands comprehensive transplant services to its citizens by catering to international patients. We offer a critical appraisal of the Singaporean system, and some suggestions to minimize the risk of abuse by international patients or operatives of illegal organ markets.

Why the body matters: uses and abuses of the human body in modern medicine.

The last fifty years have seen an upsurge in both the number of ethical dilemmas confronting the medical profession and an interest in ethics in both lay and professional circles. The first editor of this journal saw the subject as critical for medical practice, though he did not suppose that the perfect day of medical ethics would ever dawn. Taking the human body as a focus, this editorial surveys three currently controversial areas of medical ethics in Singapore: organ donation, cosmetic medicine and the separation of conjoined twins. As always in ethics, there are no simple answers, but we can get a clearer view of the values involved by recognising that we are embodied persons and so a due respect for the human body has to be a central feature of all medical care. The perfect day of medical ethics still has not dawned, but we have perhaps made some progress over the last half century.

Human tissue legislation: listening to the professionals.

The controversies in Bristol, Alder Hey and elsewhere in the UK surrounding the removal and retention of human tissue and organs have led to extensive law reform in all three UK legal systems. This paper reports a short study of the reactions of a range of health professionals to these changes. Three main areas of ethical concern were noted: the balancing of individual rights and social benefit; the efficacy of the new procedures for consent; and the helpfulness for professional practice of the new legislation and regulation. Recognition of these concerns may help in forging a new partnership between professionals and patients and their families.

They stole my baby's soul: narratives of embodiment and loss.

The controversy over retained organs, arising from the Bristol and Alder Hey findings about postmortem uses of body parts, has revealed a gulf between medical and lay understandings of the human body and its relationship with the human person. There is a clear utility in having a "doctor's story", which is different from the way patients and their families understand the significance of the body, since this enables medical diagnosis and treatment to be effective. When, however, the medical narrative intrudes uncritically into areas where the key issue is the integration of the body with the person, experienced or remembered, things go badly wrong with communications in medicine. For the lay person disrespectful treatment of the body of a loved one represents a personal attack. In this respect, strong emotion, seen as irrelevant or distracting by scientific medicine, is a central aspect of the narrative concerned with loss of a loved person. For doctor and lay person alike, a narrative of the self which pays proper attention to the embodiment of the self, offers the possibility of a genuinely humane medicine.

The virtues (and vices) of the four principles.

Despite tendencies to compete for a prime place in moral theory, neither virtue ethics nor the four principles approach should claim to be superior to, or logically prior to, the other. Together they provide a more adequate account of the moral life than either can offer on its own. The virtues of principlism are clarity, simplicity and (to some extent) universality. These are well illustrated by Ranaan Gillon's masterly analysis of the cases he has provided. But the vices of this approach are the converse of its virtues: neglect of emotional and personal factors, oversimplification of the issues, and excessive claims to universality. Virtue ethics offers a complementary approach, providing insights into moral character, offering a blend of reason and emotion, and paying attention to the context of decisions. The cases provided can be more adequately understood if we combine the approaches. Both should foster the virtues of humility and magnanimity.

Clinical governance--watchword or buzzword?

In the latest reform of the National Health Service great emphasis has been placed on the achievement and maintenance of quality. Mechanisms for ensuring this are being set up under the general title of "clinical governance". What is the meaning of this term? The metaphor behind the phrase is of navigation through stormy seas, but who guides the helmsman? Clinical ethics committees could have a part to play in these changes, provided their role is properly understood. Clinical governance is concerned with management according to an agreed set of aims. The task of ethics committees is Socratic rather than managerial. They should ask fundamental questions about the ethical norms of the services provided and give critical appraisal of the moral character of institutional policies. If these tasks are carried out then governance may become a watchword rather than just another buzzword.

A longitudinal study of health related quality of life and utility measures in patients with advanced breast cancer.

Health related quality of life (HRQOL) measures are now accepted as indicators of efficacy in the palliative treatment of cancer. Utility measures may also provide valuable information yet they have been applied less frequently. To assess the application of a time trade-off (TTO) utility measure and its concordance with the Spitzer uniscale and quality of life index (QLI) 38 women with advanced, symptomatic breast cancer were studied over a 12 month period. The correlation coefficient for QLI and TTO values was 0.54 and for uniscale and TTO 0.62. Using generalized estimating equations the regression of TTO scores on QLI and uniscale scores was significant at baseline. In longitudinal analyses results were significant only for QLI. Although all participants completed the HRQOL measures only 24 (63%) were prepared to trade time. The remaining 14 (32%) stated they felt too well to trade. Those prepared to trade time recorded significantly worse mean HRQOL scores throughout the study compared to those who felt too well to trade and had tumors which showed a poorer response to therapy. In this preliminary study utility and HRQOL scores were generally favorable throughout the 12 month study period and showed fair to moderate concordance. Further research in larger patient groups is required to better define the relationships between utility and HRQOL measures.

The decision making process regarding the withdrawal or withholding of potential life-saving treatments in a children's hospital.

OBJECTIVES: To investigate the factors considered by staff, and the practicalities involved in the decision making process regarding the withdrawal or withholding of potential life-sustaining treatment in a children's hospital. To compare our current practice with that recommended by the Royal College of Paediatrics and Child Health (RCPCH) guidelines, published in 1997. DESIGN: A prospective, observational study using self-reported questionnaires. SETTING: Tertiary paediatric hospital. PATIENTS AND PARTICIPANTS: Consecutive patients identified during a six-month period, about whom a formal discussion took place between medical staff, nursing staff and family regarding the withholding or withdrawal of potentially life-sustaining treatments. The primary physician and primary nurse involved in the discussion were identified. METHOD: Two questionnaires completed independently by the primary physician and nurse. RESULTS: Twenty-two patients were identified (median age 1 year; range 1 day-34 years). In 20 cases treatment was withdrawn or withheld, in two cases treatment was continued. Nursing staff considered family wishes and family perceptions of patient suffering as significantly more important factors in decision making than medical staff, who considered prognostic factors as most important. In only two cases were the patient's expressed wishes apparently available. In most cases staff considered the patient's best interests were served and the process would not be enhanced by the involvement of an independent ethics committee. The exceptions were those cases in which treatment was continued following disagreement between parties. CONCLUSIONS: Our current practice is consistent with that recommended by the RCPCH. The contribution of the patient, provision of staff counselling and general practitioner (GP) involvement were identified as areas for improvement.

Surrogacy, rights and duties: a partial commentary.

In response to criticisms of proposed regulation of surrogacy, it is argued that surrogate mothers and providers of fertility services have duties which make the selling of claims to parenthood unethical and which justify regulation of surrogacy arrangements.

Solidarity, society and the welfare state in the United Kingdom.

Political argument and institutions in the United Kingdom have frequently been represented as the products of a blend of nationalistic conservatism, liberal individualism and socialism, in which consensus has been prized over ideology. This situation changed, as the standard story has it, with the rise of Thatcherism in the late 1970s, and again with the arrival of Tony Blair's "New Labour" pragmatism in the late 1990s. Solidarity as an element of political discourse makes its appearance in the UK late in the day. It has been most strongly linked to the Third Way debate, as framed most influentially in the work of Prof. Anthony Giddens. In this paper we review the history and pre-history of the debate on solidarity in the UK, focussing mostly on its implications for welfare state reform. In particular we discuss the proposals for the long-term care of the Elderly issued by the Royal Commission on long-term care in 1999. In this context we critically examine the idea that solidarity is a new concept in British political culture, and that it is a concept which has real political "bite" in the project of welfare reform. We examine this through a consideration of Gidden's attempted synthesis of political argument and social theory.

[Fetal lung maturity and fetal flowmetry changes]. / Maturità polmonare fetale ed alterazioni flussimetriche fetali.

OBJECTIVE: To verify whether in high risk pregnancies, fetuses with altered Doppler flow velocimetry waveforms (FVW) are associated with both biochemical and/or biophysical changes in the amniotic fluid (AF) lung surfactant. MATERIALS AND METHODS: Hundred-eight high risk pregnancies were considered on the basis of a complete Doppler velocimetry study performed within 24 hrs before amniocentesis and delivery within 1 week from amniocentesis. From this group, 22 pregnancies were recruited as altered FVW cases on the basis of simultaneous alteration of Umbilical Artery Pulsatility Index (UA PI), and UA PI/MCA PI (Middle Cerebral Artery Pulsatility Index) ratio (UA/MCA); in all altered FVW group cases the Mean Uterine Artery Resistance Index (Ut RI) was also altered. Amniotic fluid samples obtained by ultrasound guided amniocentesis were analysed for FLM within 24 hours from collection. Pulmonary maturity was determined by planimetric lecithin/sphingomyelin ratio (L/S), phosphatidylglycerol (PG) and the lamellar bodies count (LBs). RESULTS: When FLM parameters were regressed versus FVW in the whole study group, we found a significant negative correlation between UA/MCA and L/S (r = -0.19, p < 0.05). No significant correlations were found between FVW indices and LBs. When we compared FLM parameters for gestational age subgroups (23-32 wks, > 33 wks), L/S values were significantly higher in patients with normal FVW indices in comparison to pathologic FVW pregnancies for gestational ages > 33 wks. This was reflected by a negativè correlation between FVW and FLM (UA/MCA vs. L/S r = -0.54, p < 0.02; UA/MCA vs. PG, r = -0.60, p < 0.01). COMMENT: Our data suggest that fetuses with an UA/MCA ratio > 95 degrees are not protected from neonatal RDS, as usually felt, but show a delay in FLM, particularly in pregnancies > 33 wks.

A comparison of time trade-off and quality of life measures in patients with advanced cancer.

Quality of life (QOL) measures are now accepted as indicators of efficacy in the palliative treatment of cancer. Utility measures may also provide valuable information in this area yet they have rarely been applied. To assess the concordance of QOL and utility scales, 93 patients with advanced, symptomatic cancer completed two QOL instruments, the Spitzer Quality of Life Index (QLI) and Spitzer Uniscale, and a time-trade off (TTO) question reflecting the utility of their health states. The scales were self-administered. All patients completed the QLI and Uniscale but only 37% of participants were prepared to trade time. The remainder comprised 39% who felt too well to trade time and 24% who did not wish to consider trading time at all. Those prepared to trade time had significantly worse scores on both QLI and Uniscale instruments than those who felt too well to trade. However the correlation between time traded and QLI and Uniscale scores was poor. We conclude that the TTO question used in this study, while not strongly related to QOL, provides a measure of the patient's attitude to their health state. This may explain why patients differ in their attitude to quantity vs. quality of life.

Quality of life scales for patients with cancer: how often to administer?

AIMS: To determine the optimum frequency of quality of life assessment in patients with cancer. METHODS: The Spitzer unidimensional overall quality of life scale was administered to 41 patients with cancer comparing a monthly assessment with averaged weekly assessments (group 1) and two monthly assessment with averaged weekly assessments (group 2). RESULTS: Monthly and two monthly measures reflected the averaged weekly scores well although some patients reported difficulty recalling quality of life over the two month period. However patients generally preferred the weekly assessments. CONCLUSION: For longitudinal study of quality of life in patients with cancer weekly assessment is optimal. If weekly assessment is practically difficult monthly or two monthly measurements give a good reflection of averaged weekly scores but patients are more comfortable with monthly rather than two monthly measurements.