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

Debate between Lewis Atkinson and Sojan Joseph

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Sojan Joseph (Ashford) (Lab)]

Q Dr Furst, can I ask a follow-up about anorexia? I know that anorexia is not classified as a terminal illness, but long-term starvation can lead to severe physical health conditions, and patients may end up in palliative care. Do you have any experience of those cases in Australia?

Dr Furst: We have experience of those cases in palliative care, but I would still say that they are not eligible for voluntary assisted dying. None of us would feel comfortable, because the condition has to be irreversible. Capacity-wise, you would have to make sure that they had capacity, and I would question whether someone that is anorexic truly has capacity around their illness.

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Mr Greenwich, we are minded that as well as passing really good legislation we want to get public confidence behind this. We have heard a level of concern from disabled people’s representative bodies about the inadvertent implications of this law for disabled people. Were those concerns shared when you took your legislation through, and how it has gone since the implementation of the legislation?

Alex Greenwich: In New South Wales, and across Australia, having a disability or complex mental health issue like anorexia does not make you eligible at all for voluntary assisted dying. The legislation we are dealing with and you are dealing with is not for people with a disability or anorexia nervosa, and not for people who feel they are a burden. It is for people with a terminal illness who may want the choice of a death that is better than what the illness would otherwise provide.

We worked closely with disability groups in New South Wales. Their main concern was that they would be treated equally in terms of access to the law if a person with a disability had a terminal illness. The key point is that this legislation is a safeguard to those concerns. To the point about people who are starving themselves, that is happening today in the UK because people do not have access to voluntary assisted dying. They are starving themselves to death rather than accessing a regulated scheme where they can discuss all their options and choices.

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

Debate between Lewis Atkinson and Sojan Joseph

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Professor Hoyano, the Bill would establish offences relating to coercion, pressure and so on. In the processes set out, there are a number of checkpoints, for want of a better term, at which a person seeking assisted dying may talk to doctors or others. What are your observations on how the criminal construct of offences is linked to the different opportunities for an individual seeking assisted dying to have conversations? In your view, is it likely to lead to the identification of those offences? How does that contrast with some of the considerations at the moment, where people are withdrawing treatment in a life or death situation, for example?

Professor Hoyano: It is interesting that a number of Members of Parliament who are practising physicians pointed out in the debate that they have to evaluate freedom of decision making and absence of coercion in many different medical contexts. I point particularly to the withdrawal of medical treatment at the request of the patient, even if that will inevitably lead to death. It is considered to be a fundamental human right that lies at the heart of medical law that a patient has personal autonomy to decide what to do with their body and whether or not to accept medical treatment, provided that they have the capacity to do so and are acting without coercion from external sources. Doctors have to make those assessments all the time.

I suggest that it is perhaps a convenient fallacy to say that pulling the plug on a respirator or stopping artificial nutrition and hydration is a negative act, whereas giving a patient a syringe to end their own life is a positive act. I realise that with the Tony Bland case it was convenient to say that, but there is no doubt that most people on the street would say that pulling the plug on a respirator is a positive act, and yet doctors and nurses are required to do that every day in the NHS, because that is the patient’s autonomy. If there is any question about either coercion or capacity, the Court of Protection steps in and has the jurisdiction to make those decisions.

The Court of Protection should, I believe, be the court that is supervising this, not the High Court. Three levels of judges sit in the Court of Protection; I suggest that a High Court judge be specified, which would mean a statutory amendment to extend the jurisdiction of the Court of Protection. The Court of Protection makes decisions every day on whether a patient has the mental capacity to make decisions about their own medical treatment. It is accustomed to doing that, and one aspect of that analysis is whether the patient is being coerced externally.

Generally speaking, when a patient says, “I don’t want to be on a respirator any longer; I know I’m going to die,” we do not ask questions. As I understand it, it is not part of the protocol to say, “Are you doing this because you are worried about being a burden on the NHS?”, because their personal autonomy is the overriding principle governing medical decision making in relation to the patient. I hope that that answers your question.

[Sojan Joseph (Ashford) (Lab)]

Q Professor Owen, written evidence from the Royal College of Psychiatrists states that 65% of psychiatrists

“are not confident that consent can act as an adequate safeguard”.

On mental capacity, it says:

“These decisions are opinions with a margin of error and are time specific. A person’s capacity can change”.

What is your view?

Professor Owen: That is important evidence, because it comes from a body of practitioners who are very used to doing mental capacity assessments. I think that the vast majority of that sample were consultant psychiatrists, so the pool, as it were, was one of considerable experience. That conveys questionable confidence in the consent processes, of which mental capacity is part, in relation to the decision to end one’s life. It is significant evidence about the confidence that is out there among experienced practitioners.

It is true that psychiatrists—liaison psychiatrists particularly; I have had experience with this myself, clinically and in relation to Court of Protection matters—will be involved with assessing capacity to make decisions to refuse life-sustaining treatment. Those decisions can be quite vexed and can go to the court, and the court can struggle with them.

An important question for the Committee is the distinction—or the similarity and difference, but I think that there are key differences—between the decision to refuse a treatment that is life-sustaining, of which the Court of Protection does have experience, and the decision to decide to end one’s own life. They are conceptually different decisions. I can outline some of the similarities and the differences now, but it might be helpful to take submissions specifically on that question, because it is very important and I think that there is some confusion about it. If you would find it helpful, the complex life and death decisions group could write a statement to elaborate on some of the issues. In summary, I think that that evidence from the Royal College of Psychiatrists is significant, in terms of the confidence.

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

Debate between Lewis Atkinson and Sojan Joseph

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Can I be explicit on the palliative care point? We have heard concerns from some in palliative care provision that there is anxiety that if we introduce this in the UK, there is a risk of deterioration in or failure to improve palliative care. Can you address that directly in the light of your experience?

Dr Mewett: I will say one thing briefly. Palliative Care Australia, which is our peak body, commissioned a report a few years back that studied the introduction of voluntary assisted dying legislation throughout the jurisdictions of the world. It concluded—this is a body that was not pro-VAD—that there was no adverse impact on palliative care services; indeed, it was often the contrary. Palliative care services were actually strengthened and enhanced because of the emphasis now being placed on more choices at the end of life. So I think that is an absolute furphy, as we say in Australia—you might say a red herring.

Palliative care services are not in any detriment. In fact, I would go on to say that this idea that palliative care doctors will leave in their droves if such legislation is introduced is just false. We respect conscientious objection in this space, and we have learned to live with each other and respect that people are entitled to set their own ethical limits.

[Sojan Joseph (Ashford) (Lab)]

Q Are you aware of any reported incidents of the misuse of medication that has been administered? As you explained earlier, patients can take the medication to their home.

Dr McLaren: We were made aware of one situation in Queensland last year. The eligible patient was given the medication, but they ended up in hospital and died from their disease. Their husband then went home, took the voluntary assisted dying medication and died. That was obviously a tragedy and no one wants that to occur, so I do not want to be flippant in talking about it, and I hope my comments are taken in the way they are intended.

We know that spousal suicides occur when people die, and we have had one case across Australia compared with thousands of successful cases of voluntary assisted dying conduct. No other cases have been evidenced, so the rate of that is incredibly low. The voluntary assisted dying team in Queensland, on the same day that they became aware of that case, put in steps to ensure that it would not happen again, which I believe included the required return of the medication.

We also have to balance the autonomy of having the medication available to patients at 2 in the morning, when they have an exacerbation of their pain and say that enough is enough, instead of waiting for business hours when the doctors are available to come and sit with them. It is a very delicate balance and there will always be that risk. I think the balance is struck well and the safety can be upheld by still providing the patients access to their own medication.