Terminally Ill Adults (End of Life) Bill (Third sitting)

Bambos Charalambous Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Kim Leadbeater]

Q That is incredibly helpful—thank you. Dr Kaan, do you want to add anything to that, and maybe touch on the training that takes place around identifying these things and the conversations that take place?

Dr Kaan: I echo exactly what Dr Spielvogel has said. As part of our medical training, we are trained to assess capacity in both small and big ways, depending on the size of the decision at hand, as he said. Throughout our medical training, we are trained to do that and to assess with a patient progressively over time, as we are seeing them in subsequent visits as well. This is really no different from that, although obviously the stakes are a bit higher than a blood pressure medication discussion.

We look at whether, for instance, the patient is able to voice a reason for making their decision. Do they have a logic behind it? Do they have a set of values that they can express? Is their decision consistent over time? We are looking at a longitudinal assessment, rather than just one fixed moment in time. Over the course of our assessments, it really does become clear in almost all cases that somebody either does or does not have the capacity to make this decision or any decision. This is really not outside the realm of what physicians are trained to do in any other case of medical decisions, especially large ones.

In the case of coercion, I agree that virtually all the time it is the opposite way: family members and loved ones are well-intentionedly trying to coerce or convince someone not to make this choice or not to proceed with this option, which they may have available, rather than pushing them to do it. I think the way to properly assess that is to ask open-ended questions: as Dr Spielvogel has said, to have them in the room alone, at least for a portion of the assessment, so you can have a one-on-one conversation; to ask the questions in various ways, so you are seeing the consistency of answers over time; and to look for non-verbal cues that may indicate that something else is going on. I have also never come across a case where I felt that a patient was being coerced into this decision by a family member, but rather the opposite.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Q My question is about how the legislation is going and how you have implemented it. What changes have you made since it began? What teething problems did you find as you were going along? What adjustments have you made to your process?

Dr Spielvogel: The original version was called the End of Life Option Act. It legalised assisted dying in California when it went into effect in 2016. It was then amended in 2021, I believe; the effect of the main amendment was to shorten the waiting period. There was a 14-day mandatory waiting period between two verbal requests that a patient would give directly to their physician. What we found when we were studying it was that approximately 30% of people died during the waiting period.

There were many conversations with patients. The thought process behind the waiting period is that somebody is making a persistent, well-thought-out and non-capricious decision when they are asking for this, but there is a false premise there—[Interruption.]

--- Later in debate ---

[The Chair]

We were in the middle of your reply, Dr Spielvogel. Could you pick up where you left off?

Dr Spielvogel: I will make it brief. I was saying that it is an erroneous assumption that people start thinking about assisted dying the first day that they give their first verbal request. In reality, people have usually been thinking about it for weeks before that visit. Because of that, we did not see anyone’s decisions really ever change between the first verbal request and the second, 14 days later. That and the fact that 30% of people were dying during the waiting period led us to shorten the waiting period to 48 hours. That is the main change that we have had in our law since it was implemented.

[Bambos Charalambous]

May I put the same question to Dr Kaan?

Dr Kaan: You will know that throughout the United States there are a variety of aid in dying laws, all of them slightly different across jurisdictions. I practise in both the state of Oregon and the state of Washington, so I have to keep track of two slightly different laws.

In the state of Washington, where I am the medical director for End of Life Washington, we updated our law in 2023, mostly because we were trying to increase access to it for people who lived in rural communities or for people in underserved communities. Any healthcare system in the world right now has experienced a shortage of physicians, so the requirement for two physicians to do the certification was a barrier for people in those communities that did not have access to two physicians. One of the things we did to increase access in 2023 was to make it so that one of the two providers could be a non-physician: a physician assistant or a nurse practitioner with advanced training. One of the providers still needs to be a qualified physician, but that has increased access for those in rural communities and underserved communities. We are very proud of the fact that we have done that. Additionally, we shortened our waiting period for similar reasons, from 15 days down to seven days.

In Oregon, they shortened their waiting period. Well, they still have a 15-day waiting period, which has been stable since the start in 1997, but they also now have a provision whereby, if a patient is expected to die within those 15 days—if they are at the very end of their life and are not expected to be able to survive those 15 days—they can bypass the waiting period. I really like that provision, because there are patients who come very late in their process to this decision. It may not seem like much to us, who are healthy and relatively well, but 15 days for a dying person who is suffering and really wants this option is an incredibly long time.