Who gets to decide when I can’t? End of life decision-making and deceased donation

By Dominique E. Martin and Shih-Ning Then

Most of us have ideas about how we want decisions to be made at the end of our lives, and some of us also have strong views about donating our organs and tissues after we die. Many of us appoint a loved one to make decisions on our behalf if necessary, or expect our closest family will be asked to make decisions for us, even if they haven’t been formally appointed to do so. However, it may surprise you to discover that the person making decisions about your treatment at the end of your life – if you cannot – may be different from the person making decisions about whether you donate organs or tissues after your death. This can happen even if you wanted the same person to be making those decisions.

Making a decision about donating organs and tissues after a person’s death is incredibly important. Each positive decision makes possible the recovery of organs and tissues that can be used in transplantation, helping to save lives or improve the health of several people and often providing comfort to the families of those who donate.

Many people decide they would like to be an organ or tissue donor after death and communicate this by joining a donor registry and/or discussing their wishes with their loved ones. These decisions and discussions are vital, even in countries with so-called “opt-out” or “presumed consent” legislation, which presume that people are willing to become donors unless they have indicated otherwise during their lives. In most countries, including Australia and the United Kingdom, the family of potential donors will be asked to confirm or authorise a donation decision, even if the potential donor has already registered their wish to donate or failed to “opt-out” of donation.

It makes sense that those who are asked to make or confirm a decision about donation on behalf of a potential donor should be very familiar with that person. Knowing a person well means that the donation decision-maker will likely be familiar with that person’s values, beliefs and preferences regarding donation if these are known, or if not, able to determine what the person would likely have wanted, based on their knowledge of the person’s general values and preferences in life. After all, when a person lacks capacity to make a decision about their own medical care, substitute decision-makers are usually chosen according to their expected ability to make decisions that will be informed by the person’s values, beliefs and preferences and an understanding of what that person would have wanted.

Surprisingly, in Australia there are some significant differences between legislation governing donation decision-making and that governing medical treatment decision-making. This means that in some jurisdictions, while the law permits a person to designate someone else to make decisions on their behalf about their medical treatment if they lack capacity, that same individual may not be authorised to make a decision about deceased donation for the person. Instead, approval may be required from a different person because they are the designated donation decision-maker according to the relevant Human Tissue legislation. In Australia, donation decision-makers are usually the “senior available next of kin”, and their approval is required to proceed with donation, even if a person is a registered donor and their lawful medical treatment decision-maker is in favour of the donation decision.

Such inconsistencies in authorised decision-makers may not often arise; in most cases the donation decision-maker is likely to be the same person or closely affiliated with the person making decisions about health care on behalf of a potential donor during the end-of-life period. However when the decision-makers are different, this may result in donation decisions that are inconsistent with the preferences of the deceased person. We know that donation decision-makers are much more likely to approve donation if they are familiar with the person’s preferences regarding donation; if the legally authorised donation decision-maker is not the person best placed to be familiar with the potential donor’s wishes, this could well lead them to decline donation. When a person would have wanted to become a donor but their donation decision-maker declines to approve donation, this is not only a missed opportunity for those who would have benefited from transplantation of the person’s organs or tissues, but also a failure to respect the deceased.

There are several inconsistencies between Australia’s various Human Tissue legislation and between these laws and other legislation governing medical treatment decision-making. This particular inconsistency was brought to our attention by clinicians anecdotally relating how difficult the change in decision-making authority could be in practice. This highlights the potential difficulties for clinicians who must grapple with legal complexities while supporting grieving families to make decisions about end-of-life care and donation. These complexities may also exacerbate anxiety and stress for families or others who may have responsibility for making decisions on behalf of a person at the end of their life. Importantly, this issue vividly demonstrates the need for legislation to be revised to ensure it remains fit for purpose and compatible with interrelated legislation. There is widespread consensus that decisions about deceased donation should be made in accordance with the values and preferences of the potential donor; it is time that Australian legislation is updated to ensure that authorised donation decision-makers are those who are best placed to achieve this.


Paper title: Transitions in decision-making authority at the end of life: a problem of law, ethics and practice in deceased donation

Author(s) : Shih-Ning Then, Dominique E. Martin

Affiliations: Australian Centre for Health Law Research, Queensland University of Technology; School of Medicine, Deakin University

Competing interests: Dominique has received consultancy fees from the Australian Organ and Tissue Authority (AOTA).  Dominique and Shih-Ning were members of the Australia National Health and Medical Research Council’s (NHMRC) Organ and Tissue Working Committee.  The views presented here are the authors’ own.

Social media accounts of post author(s): @NingThen @DrDEMartin

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