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Just Waiting: Ethical Challenges in Priority Setting Posed by Organ Scarcity in Kidney Transplantation
Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Over the last few decades kidney transplantation has transformed from an experimental treatment to the treatment of choice for end-stage renal disease. Unfortunately, however, the established organ donation models in many countries, relying chiefly on altruism, fail to motivate a sufficient number of donors. As a consequence, many lives which could be saved are lost, and others which can be improved are left to deteriorate.

Dealing with the challenge of scarcity in kidney transplantation requires a dual approach. In the immediate term, we must ensure the fair distribution of kidney transplantation as a scarce medical resource. In the long term, we must find a policy level solution to mitigate the root issue of scarcity. The policy approach promoted in this thesis is the introduction of incentive based organ donation. Fair resource allocation, and incentive based donation are two themes which raise interesting normative questions, and ethical challenges. Each theme corresponds to two paperswhich form the basis for the thesis.

Papers I &II, evaluate fairness in the priority setting processes underpinning access to kidney transplantation; this is done both within Sweden's four transplant centers and the Toronto General Hospital in Canada. The criteria, values, and procedures used in clinical decision-making are analyzed to identify barriers to fairness and how such barriers can be removed.

Papers III and IV, propose incentive based living kidney donation and incentive based deceased donation, respectively, as policy solutions to the organ scarcity. The most frequently raised ethical objections against incentive based models are discussed in a bid to demonstrate the moral permissibility of incentive based organ donation.

The discussion about fairness, and incentive based models, highlights that the ethical challenges raised by kidney scarcity are inherently difficult. While we may not find infallible solutions we certainly can work towards better solutions. We can create clinical priority setting processes, that while not perfect, move us closer towards increased fairness by removing clear obstacles to just distribution. We can create organ donation policies while not free of ethical challenges; do not shy away from all risk, or from asking the difficult questions.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2011. , 87 p.
Series
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 544Linköping Dissertations on Health and Society, ISSN 1651-1646 ; 20
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
URN: urn:nbn:se:liu:diva-71197ISBN: 978-91-7393-068-0 (print)OAI: oai:DiVA.org:liu-71197DiVA: diva2:445947
Public defence
2011-09-29, Berzeliussalen, Campus US, Linköpings universitet, Linköping, 13:00 (English)
Opponent
Supervisors
Available from: 2011-10-11 Created: 2011-10-05 Last updated: 2012-10-18Bibliographically approved
List of papers
1. Priority setting in kidney transplantation: A qualitative study evaluating Swedish practices
Open this publication in new window or tab >>Priority setting in kidney transplantation: A qualitative study evaluating Swedish practices
Show others...
2013 (English)In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 41, no 2, 206-215 p.Article in journal (Refereed) Published
Abstract [en]

Background: Kidney transplantation is the established treatment of choice for end-stage renal disease; it increases survival, and quality of life, while being more cost effective than dialysis. It is, however, limited by the scarcity of kidneys. The aim of this paper is to investigate the fairness of the priority setting process underpinning Swedish kidney transplantation in reference to the Accountability for Reasonableness (A4R) framework. To achieve this, two significant stages of the process influencing access to transplantation are examined: assessment for transplant candidacy, and allocation of kidneys from deceased donors.

Methods: Semi-structured interviews were the main source of data collection. Fifteen Interviewees included transplant surgeons, nephrologists, and transplant coordinators representing centers nationwide. Thematic analysis was used to analyze interviews, with the Accountability for Reasonableness framework serving as an analytical lens.

Results: Decision-making both in the assessment and allocation stages are based on clusters of factors that belong to one of three levels: patient, professional, and the institutional levels. The factors appeal to values such as maximizing benefit, priority to the worst off, and equal treatment which are traded off.

Discussion and Conclusions: The factors described in this paper and the values on which they rest on the most part satisfy the relevance condition of the accountability for reasonableness framework. There are however two potential sources for unequal treatment which we have identified: clinical judgment and institutional policies relating both to assessment and allocation. The appeals mechanisms are well developed and supported nationally which help to offset differences between centers. There is room for improvement in the areas of publicity and enforcement. The development of explicit national guidelines for assessing transplant candidacy and the creation of a central kidney allocation system would contribute to standardize practices across centers; and in the process help to better meet the conditions of fairness in reference to the A4R. The benefits of these policy proposals in the Swedish kidney transplant system merit serious consideration.

Place, publisher, year, edition, pages
Sage Publications, 2013
Keyword
Ethics, fairness, kidney transplantation, priority setting, Sweden
National Category
Social Sciences
Identifiers
urn:nbn:se:liu:diva-71309 (URN)10.1177/1403494812470399 (DOI)000315233100014 ()
Available from: 2011-10-11 Created: 2011-10-11 Last updated: 2015-09-22Bibliographically approved
2. Priority Setting in the Assessment for Kidney Transplant Candidacy: a Canadian Case Study
Open this publication in new window or tab >>Priority Setting in the Assessment for Kidney Transplant Candidacy: a Canadian Case Study
(English)Manuscript (preprint) (Other academic)
Abstract [en]

The benefits of kidney transplantation for treating kidney failure are well documented in terms of life expectancy, quality of life, and cost savings, making it the treatment of choice. It is however limited by the chronic shortage of kidneys. This study’s objective is to examine the fairness of the priority setting process underpinning the assessment for kidney transplant candidacy in one of Canada’s largest transplant programs at the Toronto General Hospital (TGH). This is done in reference to the Accountability for Reasonableness; a leading international framework in health care priority setting.

The study relies on three sources for data collection: semi structured interviews, process observation, and review of relevant documents.

The process underpinning the assessment for kidney transplantation is based on clusters of medical criteria reflecting the Canadian national consensus guidelines on eligibility for kidney transplantation. The process is permeated by ethical principles such as: maximizing benefit, equal treatment, and respect for autonomy; which are widely considered relevant in the distribution of scarce medical resources and in medical ethics generally. The criteria for assessment are well publicized and easily accessible while appeals through second opinions are well developed and supported. The process underpinning access to kidney transplantation at the TGH readily satisfies the conditions for fairness in references to the Accountability for Reasonableness framework.

National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:liu:diva-71311 (URN)
Available from: 2011-10-11 Created: 2011-10-11 Last updated: 2011-10-11Bibliographically approved
3. Compensated Living Kidney Donation: A Plea for Pragmatism
Open this publication in new window or tab >>Compensated Living Kidney Donation: A Plea for Pragmatism
2010 (English)In: HEALTH CARE ANALYSIS, ISSN 1065-3058, Vol. 18, no 1, 85-101 p.Article in journal (Refereed) Published
Abstract [en]

Kidney transplantation is the most efficacious and cost-effective treatment for end-stage renal disease. However, the treatments accessibility is limited by a chronic shortage of transplantable kidneys, resulting in the death of numerous patients worldwide as they wait for a kidney to become available. Despite the implementation of various measures the disparity between supply and needs continues to grow. This paper begins with a look at the current treatment options, including various sources of transplantable kidneys, for end-stage renal disease. We propose, in accordance with others, the introduction of compensated kidney donation as a means of addressing the current shortage. We briefly outline some of the advantages of this proposal, and then turn to examine several of the ethical arguments usually marshaled against it in a bid to demonstrate that this proposal indeed passes the ethics test. Using available data of public opinions on compensated donation, we illustrate that public support for such a program would be adequate enough that we can realistically eliminate the transplant waiting list if compensation is introduced. We urge a pragmatic approach going forward; altruism in living kidney donation is important, but altruism only is an unsuccessful doctrine.

Keyword
End-stage renal disease, Dialysis, Transplantation, Compensated donation, Ethics, Cost-effectiveness, Public opinions
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-54072 (URN)10.1007/s10728-008-0110-z (DOI)000274334600005 ()
Available from: 2010-02-22 Created: 2010-02-22 Last updated: 2011-10-11
4. Incentivizing deceased organ donation: A Swedish priority-setting perspective.
Open this publication in new window or tab >>Incentivizing deceased organ donation: A Swedish priority-setting perspective.
2011 (English)In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 39, no 2, 156-163 p.Article in journal (Refereed) Published
Abstract [en]

AIMS: The established deceased organ donation models in many countries, relying chiefly on altruism, have failed to motivate a sufficient number of donors. As a consequence organs that could save lives are routinely missed leading to a growing gap between demand and supply. The aim of this paper is twofold; firstly to develop a proposal for compensated deceased organ donation that could potentially address the organ shortage; secondly to examine the compatibility of the proposal with the ethical values of the Swedish healthcare system.

METHODS: The proposal for compensating deceased donation is grounded in behavioural agency theory and combines extrinsic, intrinsic and signalling incentives in order to increase prosocial behaviour. Furthermore the compatibility of our proposal with the values of the Swedish healthcare system is evaluated in reference to the principles of human dignity, needs and solidarity, and cost effectiveness.

RESULTS: Extrinsic incentives in the form of a €5,000 compensation towards funeral expenses paid to the estate of the deceased or family is proposed. Intrinsic and signalling incentives are incorporated by allowing all or part of the compensation to be diverted as a donation to a reputable charity. The decision for organ donation must not be against the explicit will of the donor.

CONCLUSIONS: We find that our proposal for compensated deceased donation is compatible with the values of the Swedish healthcare system, and therefore merits serious consideration. It is however important to acknowledge issues relating to coercion, commodification and loss of public trust and the ethical challenges that they might pose.

Place, publisher, year, edition, pages
SAGE, 2011
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-65395 (URN)10.1177/1403494810391522 (DOI)000288065000006 ()21239479 (PubMedID)
Available from: 2011-02-07 Created: 2011-02-07 Last updated: 2015-09-22Bibliographically approved

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