VAD and organ donation

Care providers should be aware of the potential implications when supporting clients considering voluntary assisted dying, writes Debbie Sage.

Voluntary assisted dying came into force in New South Wales on 28 November 2023, aligning the state with Victoria, Queensland, South Australia, Western Australia, and Tasmania in legalising medical-assisted dying for those who qualify.

This landmark development comes after a woman in Victoria became the first Australian to donate her organs after ending her life through the voluntary assisted dying scheme. Marlene Bevern’s story was deeply moving, and through her sheer determination in navigating a complex approval process, the former nurse with an aggressive form of motor neurone disease was able to donate her organs and save four people’s lives.

According to Donate Life Victoria, Victoria is the only state so far in Australia that has allowed a patient to donate their organs after VAD.  

Debbie Sage

Conversations revolving around the voluntary assisted dying scheme naturally evoke a spectrum of emotions, prompting people to reflect on their own preferences should their health deteriorate significantly, leading to a diminished quality of life.

Care providers play an important role in supporting clients who are considering these options, but there are legal intricacies surrounding VAD in Australia, so it’s important for care providers to be aware of the potential implications for themselves and their clients.

Unlocking hope: the delicate balance of organ donation in VAD

In general, the number of people from the overall population who can successfully donate organs when they die is very slim. According to the 2022 Australian Donation and Transplantation Activity Report, approximately 80,000 people die in hospitals each year in Australia but only around 2 per cent can be considered for organ donation. In 2022, this was 1,400 people, and 701 families of the deceased consented to organ donation, representing a national consent rate of 54 per cent.

The national medical director of the Organ and Tissue Authority states in the report that it’s vital every donation opportunity is identified, and consent rates increase.

Many individuals that are approved for VAD may be ineligible for organ donation, especially those with terminal cancer due to the medications that are usually taken.

Still, the potential to save lives through organ donation from VAD patients is significant. Patients with neurodegenerative diseases such as motor neurone disease, cardiovascular disease and respiratory failure, could be suitable and are reportedly the most usable donors in Canada after VAD. DonateLife Victoria believes that donor numbers in their state would rise 10 per cent if everybody who is granted VAD also considered organ donation.

Across Australia, each state has a VAD review board that provides an important safeguard by reviewing each completed VAD case to ensure the entire process was compliant with the legislation in that state – adding an additional layer of scrutiny to the process.

In an article published in The Medical Journal of Australia, the joint authors from the Netherlands and Victoria have called for the development of national best-practice guidelines to enable the combined procedures of VAD and organ donation to occur. This is a common practice in other countries such as Belgium, the Netherlands, Spain and Canada, with Canada reportedly leading the world in successful organ donations after VAD.

Marlene’s story in Victoria exemplified the challenges currently faced in Australia with wanting to be an organ donor after VAD. Approximately 80 people were involved in her case, with the biggest ethical consideration being to make sure she was not being coerced, and then determining whether she was a suitable candidate on medical grounds.

There were no guidelines to follow – and so the professionals involved turned to the guidelines in those other countries where organ donation had successfully occurred after medically assisted dying.

In Australia, the patient must be in hospital for organ donation to occur, unlike many VAD patients who choose to be at home.

However, the joy that Marlene’s family witnessed when she was told she would be able to donate four of her organs to sick individuals, as well as her eyes and tissues to MND research, underscores the emotional weight inherent in such a big decision.

Implications for care providers and practical advice

In supporting clients considering VAD and/or organ donation, care providers should guide clients to practitioners who can provide accurate information about these practices, whilst encouraging them to explore their own personal values and beliefs to ensure they are making an informed decision.

Respecting clients’ decisions – even if they differ from your own beliefs – is paramount. Additionally, carers must be attuned to their own feelings and reactions surrounding VAD and organ donation and seek the appropriate support if needed.

It is crucial that care providers are aware of the legal constraints involved, including the strict rule that only the individual considering VAD may initiate discussions with health practitioners. This is in place to ensure the decision is voluntary, without coercion, and entirely the individual’s own.

DonateLife says that organ donation conversations should only occur after the VAD assessment process has been completed, and that a clear ethical framework needs to be developed.

The same Medical Journal of Australia research mentioned above, published 3 July 2023, included some suggestions for the national guidelines it recommended. The researchers proposed having separate procedures for euthanasia and organ donation – so that a patient does not choose euthanasia just to donate their organs, ensuring patients request organ donation themselves, and having standardised and customisable legal agreements to enforce the ethical foundation of the whole process.

The researchers also said intravenous administration would be the preferred option for VAD, rather than the oral ingestion of barbiturates, which could make organs unfeasible for transplants.

For care providers, a nuanced approach is essential.

Offering support, respecting choices and understanding the legal landscape are imperative in guiding clients through these sensitive decisions.

As the landscape evolves, collaboration among health professionals, policymakers and the broader community will be crucial in developing comprehensive national guidelines that uphold the principles of autonomy and ethical practice.

Debbie Sage is a wills and estates senior associate at Attwood Marshall Lawyers and Aged Care Steps Accredited Aged Care Professional

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Tags: Debbie Sage, legal, organ donation, VAD, voluntary assisted dying, voluntary assisted dying in aged care,

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