Realizing the Promise of Equity in the Organ Transplantation System (2022) / Chapter Skim
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3 Foundations for a Trustworthy Deceased Donor Organ Transplantation System
3 Foundations for a Trustworthy Deceased Donor Organ Transplantation System
Pages 61-84
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From page 61... ...
The present chapter discusses how the individual and societal trust that the organ transplantation system needs to succeed depends on health care professionals fulfilling their ethical duties to do good and not to harm, to respect patients' autonomy, and to strive for justice and utility in organ allocation decisions. Additionally, such trust is contingent on other institutions -- the organ procurement organizations (OPOs)
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From page 62... ...
• Justice demands that access to health care be equitable, meaning that persons in equivalent medical circumstances actually receive equivalent medical care, free from irrelevant consider ations such as their sex, race, ethnicity, religion, socioeconomic condition, physical and mental capabilities, geographic residence, and other personal attributes. • Disparities in the ways that certain historically disadvantaged groups are treated or in the out comes that the transplantation system produces for them are signals that an injustice exists.
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From page 63... ...
In addition to the theory that right action depends on health care professionals and institutions fulfilling their ethical duties to organ donors, recipients, and their families, the chapter also develops the implications of consequentialist theories, including those such as utilitarianism that equate a right action with that which maximizes total wellbeing. An organ transplantation system that is cost effective and efficient as well as fair and equitable would deserve the trust of the public and transplant professionals.
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From page 64... ...
The Ethical Duties of Health Care Professionals and Institutions The utility of an ethical theory in guiding a field of endeavor depends on whether the theory will prove useful in resolving the conflicts that create the need for ethical guidance in the first place. In transplantation, guidance is particularly needed about how donors should be treated in organ procurement and the basis on which donated organs should be allocated.
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From page 65... ...
The Belmont Report described respect for persons as having two facets, treating competent adults as autonomous agents and protecting persons with diminished competence (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979)
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From page 66... ...
This position -- sometimes called "patient sovereignty" -- in effect flips medical paternalism on its head, making physicians the servants of their patients, using their technical skills as patients direct and refraining from trying to influence them. Today, it is generally agreed that neither extreme is ethically defensible or even sensible; instead, physicians and patients -- each with their own personality, attitudes, and values -- should strive for shared decision making, based on mutual respect and joint participation in the process (President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1982)
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From page 67... ...
Third, while physicians who foster shared decision making can thereby adhere to the principle of autonomy, the principle does not require that all physician–patient relationships take a single form. Certain minimal requirements -- disclosure to the patient of material information about the medical options and ensuring the patient has the ability and opportunity to participate in the decision-making process and the right to accept or reject medical interventions -- must always be met.
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From page 68... ...
. In situations where what is being done to a patient is not solely for that person's benefit, such as when a patient is enrolled in a clinical trial, Kantian deontology holds that such an act is permissible only if the patient had a choice whether or not to take part, thus embracing the objectives of the clinical trial as his or her own end, not solely that of the physician–investigator.3 Justice Contemporary accounts of health care ethics include justice as an important obligation of physicians and other health care professionals (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979)
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From page 69... ...
Aside from characteristics that antidiscrimination laws exclude from being considered, it is often challenging to determine which features may legitimately be taken into account and which are factually or ethically irrelevant, especially when the features arise from the system itself, such as the jurisdictional or geographic division of activities or authority, or relate to other objectives that the policy is intended to advance, such as maximizing total welfare or redressing past injustices. Justice demands fair processes when policies are adopted that could result in medically similar patients experiencing significantly different access to particular, needed resources, meaning that any factor used to differentiate among people not only is relevant (i.e., it pertains to the right or interest affected by the policy)
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From page 70... ...
Just as "equity" provides a way to ascertain when justice is manifestly absent because the organ transplantation system treats groups of people very differently for reasons that are unconnected to their medical needs but that align with their membership in a group that is subjected to discrimination, "fairness" is useful in choosing the most just policy from among alternatives, each of which is defended by reasonable people. Efficiently Maximizing Welfare: Utilitarian Ethics While the ethics of medical practice and research is typically framed in terms of physicians' duties, deciding what is the right thing to do in a particular circumstance sometimes DEFINITIONS OF HEALTH DISPARITY, HEALTH INEQUITIES, BOX 3-2 AND HEALTH EQUITY Health disparity: This is when "a health outcome is seen to a greater or lesser extent between populations." A health disparity is "a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage.
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From page 71... ...
In this way, ethical theory supports attending to the efficiency of the health care system, which is one aspect of a trustworthy system of organ transplantation, namely, that the available resources are being used efficiently to maximize welfare. Utilitarianism faces some objections that are internal to the theory.
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From page 72... ...
While most of the issues that the committee was asked to study, such as organ allocation policies and maximizing the use of donated organs, focus on patients who need a transplant, transplantation begins with organ donors and even deceased donors also begin as patients, to whom ethical obligations are owed not only by the health care professionals who care for them, but also by other individuals and institutions within the organ transplantation system with whom they never personally interact.7 Beneficence and Nonmaleficence For patients who experience organ failure, transplantation offers a route back to health and long-term survival. Yet the obvious benefits of a system that provides organ recipients something of such great value does not end all doubts about beneficence and nonmaleficence.
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From page 73... ...
Failing to provide all care needed to preserve the function of transplanted kidneys is not beneficent -- and not efficient, as well -- since recipients whose transplant fails will need a second transplant and, in the meantime, dialysis. The issue of a potential dual loyalty, which can compromise physicians in fulfilling their duty of beneficence, also arises in the care of deceased organ donors, where it is recognized and dealt with directly in the law.
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From page 74... ...
Given the variety of databases, there have been challenges in knitting together nonstandardized data from 52 independent state agencies to better understand the individual registry rates by state and by demographic. Donate Life America notes that 55 percent of all organ donors in the United States have been authorized by first-person authorization via a donor registry (Donate Life America, 2021)
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From page 75... ...
Like any patient, potential organ recipients receive respect when the transplant professionals who provide their care involve them as informed decision makers in the treatment process from being evaluated and listed for, to then undergoing, a transplant. Respect for autonomy is typically equated with obtaining informed consent, but a good deal can be lost in translation from ethical principle into legal necessity, especially when the latter is reduced to getting a patient's signature on a consent form before surgery may commence.
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From page 76... ...
, and the unpredictable timing of deceased donor offers -- can make clinicians' typical shortage of time for detailed discussions with patients even more pronounced. Nevertheless, programs need to be forthcoming with organ transplant candidates about the decisions that will need to be made and to find out the extent to which patients want to be involved in those decisions.
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From page 77... ...
Such conversations need to be repeated with patients who are awaiting a transplant for months or years, since their views on what risks are worth taking may change over time. Finally, transplant teams need to remember that voluntariness is an essential component of informed consent, which means that patients must be able not only to give but to withdraw consent.
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From page 78... ...
TRANSPARENCY: AN INSTRUMENTAL VALUE FOR A TRUSTWORTHY SYSTEM The ethical principle of respect for individual autonomy requires that health care providers disclose to patients the information they need or want to understand their choices and make an informed decision. Making relevant information available to patients is thus part of what makes the organ transplantation system trustworthy to them.
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From page 79... ...
A different type of transparency exists for data about transplant waiting lists, organs donated and used, and transplant outcomes because of the requirements of law and regulations for annual reports on a national basis. Data from the Scientific Registry of Transplant Recipients and other sources are not only carefully scrutinized by regulators, congressional oversight committees, and advocacy organizations but also sometimes covered by the press.
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From page 80... ...
The call to action in many OPO public education campaigns is for the public to sign up on their state's donor registries. While some OPOs educate the public about organ donation and transplantation, most OPO-sponsored education focuses on deceased organ donation, and transplant centers are more likely to engage in public education efforts on living donation.
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From page 81... ...
. Limited health literacy is common among dialysis patients and kidney transplant recipients (up to 30 percent)
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From page 82... ...
2009. Health literacy skills of kidney transplant recipients.
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From page 83... ...
2018. Health literacy among Swedish lung transplant recipients 1 to 5 years after transplantation.
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From page 84... ...
2012. Click to "like" organ donation: The use of online media to promote organ donor registration.
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