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

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Department: Ministry of Justice
Danny Kruger Portrait Danny Kruger (East Wiltshire) (Con)
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Q I will ask you one quick question, Dr Cox. Dr Clarke said that the capacity assessment was poorly conducted. Do you think that the threshold is appropriate, using the Mental Capacity Act 2005? Assuming that we could conduct these assessments adequately, do you think that the threshold is safe?

Dr Cox: I and my colleagues have concerns about the safeguards in the Bill. It is not just the capacity assessment; we also acknowledge that prognosis is incredibly difficult to assess accurately. I would say that you cannot always identify coercion. You can identify it when it is very obvious and extreme, but when it is very subtle, we cannot always identify it. After the event, there is nobody to tell us about coercion, so it is very difficult to monitor.

The other thing that concerns me is that we are putting all these assessments on the shoulders of two doctors individually, followed up by a High Court judge. In any other clinical practice, when we are making very serious decisions, we know that shared decisions are much better quality, much more robust and much safer. In clinical practice, we make all these decisions in multi-professional teams. I would never make these decisions independently of my team, because the perspective they bring can help me to understand things that I am not seeing.

The thing that I am really concerned about is how it is possible for these doctors, even with training, to have a good understanding of all illnesses in order that they can identify prognosis—neurological, cancer and every other. How is it possible for them to really understand capacity when capacity is not an absolute; it does change and it is very complex to assess? How is it possible for them to see all cases of coercion, which can be invisible?

In addition to that, are those doctors going to be looking out for opportunities to refer to palliative care when they see somebody who has suffering that could be addressed and may change their mind? Are they looking out for untreated depression? We know that treatment of depression can result in people changing their minds about wanting to die. It is a lot to ask these individual doctors to do, and that really concerns me.

Kit Malthouse Portrait Kit Malthouse (North West Hampshire) (Con)
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Q I want to pursue that point a little with you, Dr Cox. My understanding is that your profession is already taking these decisions, or supporting patients to take these decisions—for example, the withdrawal of ventilation for an MND patient towards the end, or if I decide to decline treatment or food and water to end my life as quickly as I can. Presumably, you already have guidelines or training about assessing coercion and capacity in those circumstances. I think in some—for example, advance directives—you are legally obliged to comply with a patient’s wishes. Are those guidelines and safeguards broadly translatable across into what, from my point of view, is another choice that a patient may make to end their life?

Dr Cox: There are two differences that I would identify. The examples you give are of somebody who may be naturally dying and is being kept alive, so the difference is that you are withdrawing a treatment; you are not intentionally killing them. This is the first difference with assisted dying.

The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions—they are safer and more robust. Secondly, the moral distress associated with these decisions is much less if you share them. That is also a worry for me—what happens to the moral distress of the co-ordinating doctor and the other assessing doctor? They are carrying a lot of moral distress. My understanding is that a very small percentage of doctors will want to engage with this—maybe 1% or 2% of all doctors will want to be in those assessing positions. They are carrying a lot of that distress because they will be doing a lot of assessing.

Kit Malthouse Portrait Kit Malthouse
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Q Understood. My other question is for all of you, but particularly Dr Clarke. You have mentioned autonomy a number of times. The Bill is trying to pass autonomy to the individual at a particular moment at the end of their life. It feels to me that the picture painted currently is a largely unregulated one. Dr Clarke, I think you said that there are no regulations or guidelines about what is going on. As my colleague Sarah Green said, there is no monitoring or measuring of what is going on. In general terms, given that patient autonomy is at the centre of this, would you welcome a set of rules that is understandable by patients and doctors, rather than what we have at the moment, which is—casual is not the right word—an ad-hoc negotiation at the time, depending on what the patient wants to do?

Dr Clarke: I think that is not quite right, and certainly not what I intended to convey. There are rules. There are very clear legal and professional rules and guidance and protocols around how to have these conversations. However, in practice, the quality of the conversations is contingent on the confidence, expertise, training and background of the individual clinicians having the conversations. There can be a great deal of inter-doctor variability in how conversations are conducted. In terms of addressing that, I would suggest that in an assisted dying scenario the crucial thing is to make the guidance and training as robust as it possibly can be to reduce the inter-practitioner variability.

Kit Malthouse Portrait Kit Malthouse
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Q Sorry to interrupt you, but I am conscious of the time. We heard this morning how vital training is; I think that is broadly accepted from a number of voices. I want to question you about the issue of the choice people face. I understand the point you are making about the variable state of palliative care versus the choices people face, but that is quite macro. Day by day, patients are facing a choice about what is ahead of them in the next few months. I would not want to put words in your mouth, but I presume you are not saying that, for the good of the whole, they should go through an awful death that they do not want to go through while we wait for palliative care to catch up.

Dr Clarke: No, of course not.

None Portrait The Chair
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Order. We have half an hour left. Nine people have asked questions and there are eight people left who want to. If we want to get through the questions by 3.15 pm, people will have to be self-disciplined when they ask their questions.

To the panel, forgive me, but we need answers in as reasonable a time as possible given the circumstances. Dr Clarke, if you wish to answer the last point, feel free.

Dr Clarke: Of course we want as much autonomy for as many patients as possible. The issue is around safeguards. If, for instance, you say to a vulnerable patient who has just been told they have a diagnosis of terminal cancer, “Have you thought about assisted dying?”, I would suggest that stating it broadly like that is a form of pressure and that you are potentially unintentionally coercing that patient. The very act of raising assisted dying in that way will make that vulnerable patient think, “God, is this doctor telling me that my life is not worth living any more?” Autonomy is much more subtle and complicated than we assume from outside.

--- Later in debate ---
Marie Tidball Portrait Dr Tidball
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I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap.

I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.

Kit Malthouse Portrait Kit Malthouse
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I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.

Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.

Lewis Atkinson Portrait Lewis Atkinson
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I agree with my hon. Friend the Member for Spen Valley. Having agreed to extend the time on Thursday to hear devolution issues and from the Royal College of General Practitioners and the Royal College of Psychiatrists, by adding two further witnesses, the amendment to the amendment would reduce the time available on those options. In an ideal world we would like to hear from all sorts of people. The option of written evidence is available. We have got other evidence, and I want to ensure that Thursday’s session is focused on the proposals that my hon. Friend has made.