Terminally Ill Adults (End of Life) Bill

Written evidence submitted by Professor Dominic Wilkinson (TIAB147)

1. This submission has been prepared to support the deliberations of the House of Commons Public Bill Committee

2. In this submission, I consider the safeguards that may be necessary for legalising assisted dying drawing on relevant experience (within the UK) of other high stakes medical decisions. I also note the ethical principles around doctors discussing controversial options with patients.

Expertise

3. My name is Professor Dominic Wilkinson. I have been a consultant in newborn intensive care at the John Radcliffe Hospital Neonatal Unit, Oxford since March 2014. I am chair of the Clinical Ethics Advisory Group for the Oxford University Hospitals NHS Foundation Trust. I am Professor of Medical Ethics at the University of Oxford, and Director of Medical Ethics at the Uehiro Oxford Institute. I have published widely in peer reviewed journals particularly in relation to end of life decisions for adult, critically ill children and newborn infants. I have written a textbook on the topic of prognosis and decision-making for critically ill children, published by Oxford University Press in 2013. I am co-author of ‘Ethics, conflict and medical treatment for children: from disagreement to dissensus’ published by Elsevier in 2018 and author of ‘Medical ethics and the law: a curriculum for the 21st century’, published by Elsevier in 2019.

4. I am not a member of, nor associated with any organisations campaigning for or against assisted dying.

5. I am an invited expert member of the BMA medical ethics committee and the Royal College of Paediatrics and Child Health Ethics and Law Committee. (The views in this submission are my own and do not represent the views of those bodies).

Safeguards and assisted dying

6. A crucial consideration in the Terminally Ill Adults (End of life) bill is the question of what safeguards are necessary – particularly to protect against coercion in decision-making.

7. There are important lessons to be learned from other jurisdictions that have legalised forms of assisted dying – and the effectiveness of the safeguards they have employed.

8. For this submission, I will focus on the highly relevant experience within the UK of other sensitive and crucial medical decisions and the safeguards that are employed for those decisions.

End of life decisions in intensive care

9. Doctors in England and Wales (and the rest of the UK), are already frequently involved in end of life decisions. Those decisions are extremely important and affect a large number of people.

10. For example, 4-5% of the population die in intensive care units. [1] The majority of those deaths follow decisions to withdraw or withhold intensive treatment, for example to stop a breathing machine. Such decisions occur for adults, children and even newborns. The decisions are usually not able to directly involve the patient himself or herself (since at the time of decisions, they are usually too unwell), but will involve family members and take into account the person’s wishes if possible.

11. It is crucial that such decisions are focused on the best interests of the patient, and are not motivated or influenced by the interests of family members.

12. There are clear professional guidelines around such decisions. [2] Where there is uncertainty or disagreement, there are existing processes for review of decisions (for example, drawing on second opinions, on clinical ethics committees or referral to the court). However, those additional reviews are not necessary in the vast majority of decisions that are made.

Advance refusal of treatment

13. There are also a large number of legal decisions made in advance by patients to refuse medical treatment (so called ‘living wills’). Around 3% of the population of England and Wales have such documents.

14. In common with the conditions for accessing assisted dying, it is thought to be very important that when people sign such documents they have capacity (ie the ability to make decisions), and are not being coerced or pressured.

15. At the present time there is no formal medical process for assessing patients when they sign such documents, (they do not need to see a doctor at all), nor is there widespread concern about coercion affecting decisions.

Living organ donation

16. There are almost 1000 living organ donors per year in in the UK. [3] In living organ donation, patients donate a solid organ (commonly a kidney, but sometimes part of a liver).

17. Many of those donations are to family members.

18. There is acute awareness of the potential for donors to be pressured or coerced into donating their organ.

19. This is managed by the use of an independent assessor who interviews donors to ensure that they are making decisions free from pressure or coercion. [4]

Withdrawal of artificial nutrition and hydration

20. The above decisions are widely accepted, but there are other end of life decisions that remain highly controversial (albeit lawful). For example, since the case of Tony Bland in the early 1990s (who suffered severe brain damage in the Hillsborough disaster in 1989), it has been legal in England and Wales to withdraw artificial feeding from some patients with very severe permanent brain injury, left in a prolonged disorder of consciousness.

21. These decisions were thought to be so serious, that for a long time families and doctors were required to go to court prior to making such a decision. However, the court process was lengthy, expensive, and burdensome. [5] In 2018, an influential Supreme Court ruling concluded that it was not necessary to involve the court in every case. [6] There are now clear professional guidelines that set out how such patients should be assessed, and how decisions should be reached in patients’ best interests. [7]

22. Where there is disagreement or uncertainty, cases can still be referred to the Court of Protection. But if there is no disagreement and all involved are agreed that this is what the person would have wanted, the court is not needed.

Late termination of pregnancy

23. Since 1967, it has been lawful for women to have a termination of pregnancy in a range of circumstances. The most difficult cases occur late in pregnancy (ie after 24 weeks). There are limited circumstances in which this is legally available, and it requires agreement by two independent doctors.

24. It is crucial that women are not pressured or coerced into such decisions, and that they are supported to in their decision either to continue or to end their pregnancy.

25. Only 1 in 1000 abortions in England and Wales occur at this late point in pregnancy. There are strong differences in opinion on this practice, from those who are completely opposed to later abortion, to those who believe that it is time to decriminalise. But the long experience of this law (with polls suggesting that most people support it [8] ), suggests that there isn’t an obvious need for more stringent rules.

Balancing ethical principles

26. The basic tension in developing policy and law around serious medical decisions is to find the right balance of stringency in decision-making with ensuring access. If the rules are too stringent, patients will not be able to access options. If they are too lax, there is the danger that patients will access inappropriate options.

27. For all of the above highly sensitive and impactful decisions, the primary responsibility for ensuring that patients are making informed choices, that they have decision-making capacity, and that they are not being coerced – falls to the health professional providing that service or care.

28. For some decisions (for example, late termination of pregnancy, or live organ donation), the formalised use of an independent assessor or second expert clinician is used to verify the appropriateness of providing the desired intervention.

29. In cases of uncertainty, complexity or conflict, there are mechanisms for referral to clinical ethics committees or to the court. However, these are not routinely required.

Physicians discussing choices

30. For the high stakes decisions that I have discussed (withdrawal of life sustaining treatment, termination of pregnancy, refusal of treatment, organ donation), physicians are permitted to raise those choices with patients where they are relevant.

31. It is crucial that physicians do so in a way that is empathic and sensitive to the needs and values of the patient and that patients do not feel any pressure to make such choices.

32. For these decisions, ensuring that physicians communicate appropriately is typically managed through professional guidance and training.

33. If physicians were not permitted to discuss these choices (eg withdrawal of life sustaining treatment, termination of pregnancy), that would negatively affect a significant number of patients (particularly those with lower health literacy) who are not aware of the lawful and ethical choices that they may have available to them.

Conclusions

34. In considering which safeguards should be incorporated into legislation on assisted dying, it is highly relevant to consider the safeguards that are used for other important medical decisions. There is a large amount of experience with such decisions in the UK.

35. For other high stakes decisions, review by a court is required only in cases of uncertainty or disagreement.

36. Review by an independent assessor, or by a second expert is considered sufficient to protect against coercion in decisions such as late termination of pregnancy or living organ donation.

37. For other sensitive medical decisions, doctors are permitted to initiate discussion of options with patients where that would be a lawful and ethical choice and where the doctor is of the view that the patient may benefit from the discussion.

I hope that this submission is helpful to the committee. If I can be of any further help, please do not hesitate to contact me

Yours sincerely,

Professor Dominic Wilkinson

16 January 2025