Counsels of Despair: A Letter Concerning Victoria’s Voluntary Assisted Dying Bill Current

In the wake of the Victoria’s Voluntary Assisted Dying Bill, we publish a letter from medical specialist Rhys Thomas. The letter was written to the state’s politicians in the lead-up to the bill’s passage and offers a considered professional—and also very personal—reflection on what the legislation means for Victorians.

Having worked as doctor since 2004, and as a consultant anaesthetist since 2013, the very emotive and controversial issue of assisted suicide has always been on my radar.

During my medical career I have been involved in the care and treatment of many patients with severe life-threatening illnesses. I’ve participated in discussions with patients, families and other staff regarding diagnosis, prognosis, treatment options & limitations, as well as end-of-life care. Reflecting on these experiences, I have come to the conclusion that legalising assisted suicide is a path that we should not pursue. Here’s why.

1. The Message of Legalised Euthanasia: Suicide is Acceptable.

First, it sends a confusing message to society regarding ending one’s own life. I have seen first-hand the devastating outcome of people feeling there is no other option in life but to end it. Historically, the universal message has been that no matter how bad things get, you should never end your own life. There is always something that can be done to help. However, if assisted suicide becomes legal, it becomes “There is now a level of pain & suffering, namely ‘x’, above which it IS okay to end your life”. Given that pain & suffering are by definition subjective measures, it will be very difficult, if not impossible, to decide whose condition is above ‘x’ and whose is not. And is it fair, or even legal, to discriminate against individuals on the basis of age, diagnosis, disability or expected life span? Once the legal right to assisted suicide has been granted to some, there is no logical reason for it not to be granted to all.

2. A Radical Autonomy That Leads to Widespread Societal Consequences.

Second, this debate is often framed as one about “autonomy”— that an individual should have autonomy in decisions about how they live their life, including the decision on when to end it. As a doctor, I understand how important patient autonomy is. However, in healthcare, the goal of patient autonomy is for the patient to have the opportunity to discuss treatment options and goals, ask questions, and then give fully informed consent or refusal to the options discussed. It is not about the patient being able to demand a particular treatment option, especially where it may have flow-on consequences due to costs, impact on access to care by others, or where the doctor believes the treatment is ineffective or even harmful. Assisted suicide proponents often make the argument “It’s my life, so it’s my decision, and everyone else should butt out!”; They feel their decision affects only themselves. However, leaving aside any impacts on their immediate family, it is important to remember that changes to legislation and the myriad individual choices that follow, can resonate through society producing unintended consequences. Often, once something becomes legal, it eventually becomes normalised. Once normalised, it becomes normative. Once normative, it becomes expected. And once expected, it is likely that anyone who acts or believes differently will be made to feel very uncomfortable, or worse still, directly criticised and ostracised..  This has happened in the case of liberalising access to abortion. Those with a terminal illness may feel they are being selfish by wanting to live longer at significant expense and inconvenience to their family, when a cheaper and easier option is available.

3. A False Belief of Euthanasia:  That No Good Can Ever Come from Suffering.

There also seems to be an underlying assumption that “good” can never come from pain and suffering. At one level, this seems obvious, and most people would agree that, where possible, we should avoid, or at least minimise, pain and suffering. Indeed, this is a fundamental component of medicine generally, and my specialty of anaesthetics specifically. But it doesn’t necessarily follow that because we should try to reduce or minimise suffering, that no good can come from it. You don’t have to look far for examples of people who have been through significant hardship or suffering, but are able to identify genuine good that has come as a result of, not just in spite of, the trauma they experienced. So not only are we risking significant harm with assisted suicide legislation, but it could also result in missed opportunities for good. One might argue, that suffering because of a terminal illness is different because the person won’t be alive to experience any of this “good”. However, this assumes a number of things which I think need to be challenged. The first and most obvious one is it assumes no “good” could be experienced by the patient while they are still alive. Second, it assumes we are accurately able to predict the expected lifespan and course of treatment and symptoms of the patient. Finally, it assumes that the only relevant “good” is that which can be experienced by the patient, and ignores any post-traumatic growth experienced or resilience developed by the family members and carers of those looking after the patient in the lead up to their death. As a result of my clinical experience as a doctor, and my life experience as a human being, I have come to realise  that these assumptions are false.

4. A Real Scenario: a Tale of Two Outcomes.

Finally, in order to highlight the issues I’ve raised, consider the following scenario. Imagine a father of three young kids in his thirties. He is working full-time as a doctor, and supporting his family.  Out of the blue, he is diagnosed with metastatic melanoma in his brain, lungs and abdomen, and is given a life expectancy of less than 6 months. Treatment options, including clinical trials, are ruled out one by one, and he undergoes palliative neurosurgery and whole brain radiotherapy. Assisted suicide is legal, and he would qualify for it. From his career as a doctor, he knows what kind of death to expect, with significant pain and suffering, as well as a loss of function and autonomy. But he is keen to make the most of symptomatic treatments and palliative care options that are available, and to avoid sending the signal to his kids, and those around him, that when life gets tough, it is okay to end it. However, a few months later, the cancer causes a major bowel obstruction. He undergoes surgery and a stay in intensive care, but he is now a broken man, with ongoing pain, vomiting, diarrhoea and weight loss. He decides it is all too much, and doesn’t want to burden his family any more, even though they assure him they don’t see it that way. But, after a short period he takes up the option to end his life. Those around him are sad to see him go, but are relieved to see his suffering end, and society applauds the legislation that allowed him to end his life “humanely”, and life goes on. He had a “good death”.

Imagine now, the same scenario, but with a different ending. Assisted suicide has not been legalised so he struggles on with this poor quality of life. However, 1 month later, he unexpectedly qualifies for a clinical trial of a new cancer treatment. Despite feeling very unwell, he elects to start the trial, thinking any contribution to medical science before he dies would be a worthwhile legacy for his children. Within a few weeks of the trial starting he gets sicker, requiring  more surgery and time in hospital. His symptoms worsen and nothing seems to help. However, despite his worsening physical and mental state, the trial medication seems to be working. His tumours are shrinking. He doesn’t see this as good news, as it seems it will just prolong his suffering even more, without providing an ultimate cure. He remains unwell, essentially housebound and dependent on others for a number of months. Then, slowly, but surely, his symptoms begin to improve. New symptoms and treatment side-effects arise from time to time, but he finds he is beginning to enjoy life again. He is able to get outside and even walk his kids to school. All of a sudden, having prepared for death, he finds himself still alive one year after diagnosis. He is able to get his drivers licence back and gain some independence. Two-years down the track, his treatment continues. There are still some side effects, but they are manageable. Some tumours have disappeared while those that remain are stable. Amazingly, three years later, he is exploring options to get back to work. Fast-forward to the current day, over 4 years later. He is back working as a doctor, with an emphasis on improving patient safety in healthcare, and is now sitting at his computer writing a piece on why he thinks legalising assisted suicide is a bad idea.

Yes, this has been my lived experience over the last 4 years. Despite my desire to keep emotion and anecdotes out of this debate, I felt it necessary to provide my own. I would like to think that even if assisted suicide had been an option 4 years ago, I wouldn’t have taken it up, but it is impossible to say. There were some dark days then, with significant physical and emotional pain and suffering. I know my family would have been against it, and certainly wouldn’t have pressured me into it, but who knows how much pressure I would’ve exerted on myself if the option was available.

Obviously my situation is rather unique, but it does highlight how difficult it can be for doctors to predict life-expectancy, response to treatments, and what new options might lie just over the horizon. As I have said, in a complex society such as we have today, it is impossible for individuals to make decisions and perform actions that don’t in some way influence those around them, and the wider society. The bigger the decision, the bigger the potential impact. Surely there can be no bigger decision than the one to end your own life.