End of Life Choices – Reflections from a medical elective placement in Oregon, USA

As a trainee doctor, death and dying is something that I will inevitably be dealing with during my professional life. And caring for people who are dying can be one of the most dramatic things that doctors will come across. Yet, it still isn’t something we are practiced in talking about. I wanted more experience in how to look after the dying person, and decided to organise my medical elective in end-of-life care. I chose Oregon, USA, as a destination because they have an interesting model of palliative care alongside Medical Aid in Dying (MAID). MAID came out of the Death with Dignity law – a law passed in Oregon over twenty years ago, which allows people at the end of life with a six-month prognosis (or less) to take a medication to assist in their death.

Prior to my arrival in Oregon, I was expecting that MAID – a legal choice at the end of life – would be brought up in consultation as readily as, for example, a new drug regimen for pain management, or an appropriate antiemetic to help with nausea. This is not to say that the discussion would be a simple one, but more that it would be easily accessible to the dying person as a part of a wider conversation about end-of-life choices. I soon realised I was naïve in this expectation, as the reality is actually that MAID was never something that would be ‘offered’ to the patient in consultation with a healthcare professional. It became clear, from what I saw and heard, that the few people who were eligible and then opted for MAID were all people who had very decidedly made this decision for themselves, independently of their doctor. MAID was never something I saw initiated by the doctor. And when I asked doctors about how the conversation with a patient came up, it was apparent – even by those advocating for MAID as a choice – that it would be inappropriate to initiate discussions for fear of it being interpreted as coercion.

Alongside thinking about the fear of being coercive, I also became interested in how a doctor’s individual belief system may affect how a patient accesses MAID, as the moral application of MAID continues to cause divisions. I have always been very curious about the power of an individual’s personal beliefs, and how these beliefs reveal themselves during professional life. Personal beliefs shape what we think to be right and wrong, and it does not strike me as surprising that when it comes to life and death, people feel very strongly about how these events should play out. In a similar vein to anti-abortion arguments, there are groups of people who believe in the preservation of life, and thus do not believe in MAID. Whilst this is not a piece of writing arguing the bioethics of whether MAID is morally right or wrong, it does invite a consideration of when personal beliefs may overtake, for example, a doctors professional integrity and duty to their patient.

I began thinking about this early in my trip after I met Dr Grey*, a family doctor with many years of experience working as an advocate for MAID. As a doctor, his thoughts were that there is a paramount duty to use professional integrity to guide clinical practice towards what best serves the beliefs and wishes of the patient. This is very different, he says, to using one’s own personal belief system to guide what one might think as best for their patient. And Dr Grey explains that where some doctors may resist conversations about MAID because of personal beliefs, he sees it as his professional duty to talk to a patient openly and honestly about all the options of how to die. Thus, in order to do this, it may be appropriate for a doctor to be the first initiator of a conversation about MAID.

Dr Grey’s approach stuck with me during my time in Oregon, and I slowly realised that he was in fact rather maverick in his outlook. As the first days of my clinical placement in the hospice went by, conversations between healthcare workers and their patients began gathering in my brain. I found myself often waiting for MAID to be offered to the dying patient, yet this offer was never made. Realising this, I stopped waiting, and instead focused on how different words were delivered about common themes of prognosis, the “dying” process, and then death itself. And I began to see that to be an advocate for MAID, this did not necessarily have to equate with the healthcare worker initiating the conversation with the patient. But it could do – and as Dr Grey explained, for him it was actually part of his professional duty. For most, however, supporting the option of MAID as an end-of-life choice meant responding to a patient’s request and guiding them towards necessary next steps.

My reflections on MAID in Oregon have focused on this aspect of “how to have the conversation” because it seems to be one of the main areas that both doctors and patients have difficulty – and thus something that may come up here in the UK should we ever pass a similar law. There are of course many practical issues that go alongside bringing in new healthcare legislation such as ensuring appropriate safeguarding measures, organisation of policy frameworks, and medication issues. But as an ethical question, I did notice myself continually returning to how these initial conversations about MAID actually came about. I am not yet decided on what I consider to be the “best” approach – whether it is the duty of the doctor to initiate the discussion – or instead whether it should always come first from the patient. I see the logic of the latter, but I am compelled by Dr Grey’s “professional integrity” and the duty he places on himself to discuss all end-of-life options (including MAID) with his patients. Perhaps there is no ‘best’ way at all, and as is often the case, it will depend on each individual patient. But it is an interesting thought, and one that will require a doctors scrutiny here in the UK, should they ever find themselves in these consultations in the future.

*Pseudonym