Health and Care Bill

Baroness Finlay of Llandaff Excerpts

Lords Hansard - Part 3 & Committee stage
Wednesday 26th January 2022 Lords Chamber

[Baroness Wheatcroft (CB)]

Yes, Lord Mackay. Your Lordships can see how nervous it makes me feel! I think that, in this particular situation, private Members’ Bills have failed, and the Government show absolutely no intention of moving on something that is so crucial to so many people. Although you have to be wary of opinion polls, it seems perfectly clear that opinion in this country has moved and that a majority of people would like not to have assisted dying made mandatory but to have the choice at the end of life of how they say farewell.

Like others, my inbox has been inundated, and I have tried to reply to one or two of those who have been opposed to the proposal from the noble Lord, Lord Forsyth. One doctor, Dr Whitehouse, a palliative care doctor, wrote to tell me that nobody had come to him whom he could not help, and it was very important that everybody should treasure their short remaining time, and palliative care would do that and assisted dying should be resisted. I wrote back to him a week ago through email—he gave me his email address—and said that I wanted to know more. I am a firm believer in palliative care; it works wonders, and it has improved hugely over the years, but I do not believe that it works in every case. I asked him whether it worked, for instance, with motor neurone disease, or whether it could cope with the incontinence which makes the end of life such a discomfort and an indignity for so many people—or did the help that could be provided mean only understanding and care, which does not necessarily deal with the indignity at all? Noble Lords will not be surprised to learn that I have not heard back from Dr Whitehouse, and neither do I expect to.

This matter polarises people, but the amendment is asking merely that Parliament should have the chance to debate a matter that is crucial to parliamentary Members and, more importantly, the constituents who vote for them. I support both amendments.

[Baroness Finlay of Llandaff (CB)]

My Lords, I declare all my interests in palliative care and as a director of Living Well Dying Well and vice-president of Marie Curie and of Hospice UK. I have two amendments in this group. I do not intend to lay out all the arguments against the amendment proposed by the noble Lord, Lord Forsyth. Indeed, the noble Lord was right that we had only three-minute speeches when we debated the Bill proposed by the noble Baroness, Lady Meacher. However, I remind the Committee that the Bill put forward in the other place by Rob Marris MP actually failed—it was voted out—and it was one that came high in the ballot, so if it had been voted in it would have progressed quite well.

Personally, I do not think this is the place for us to debate assisted dying, which would need a change in the criminal law. The procedural issues have been clearly explained by the noble and learned Lord, Lord Mackay of Clashfern. The noble Lord, Lord Forsyth, spoke about the right to die. I remind him that everybody is going to die—it is an inalienable right. What he is talking about is licensing some people to provide lethal drugs to others, against a set of criteria. I remind him that three-quarters of people in my branch of the profession—specialist palliative medicine—who look after these patients all the time, not only do not want the law to change but do not want anything to do with it in the event it changes.

The claim has been made that palliative care is not a panacea. Assisted dying is not a universal panacea either. There is a 6.9% complication rate in Oregon, which is experimenting with the fourth drug cocktail in seven years. I remind the Committee, because I have made a plea for specialist palliative care, that it is estimated that 118,000 patients each year in the UK cannot access specialist palliative care. That is why I have an amendment tabled to the Bill, which I hope the Government will look favourably on. Areas where assisted dying has happened rank low on end-of-life care compared to the UK. Areas with assisted dying have dropped in the rankings for palliative care since 2015 compared to areas which did not change the law.

Amendment 203 is well intentioned and builds on all the moves for advanced care planning that are spearheaded by specialist palliative care. I know it was drafted originally with Marie Curie’s help, because it initially discussed with me whether I would table it, but I did not and did not sign it for two reasons. First, it is imperative that such conversations begin early, are part of ongoing care and do not become a tick-box exercise which says, “Conversation offered—tick”. That risks all the dangers of what happened with the Liverpool care pathway. Sadly, I have seen all too often a patient being told, “But that’s what you said you wanted”, when their needs have changed. Much research on advanced care planning has been done by my colleagues in my team in Wales. This has now informed some of the moves that are happening. Having open conversations is something that patients want, and the clinicians trained in communication skills want to provide those openings and do.

The second reason that I was concerned about this is that excellent draft guidance on advanced care planning has been developed by NHS England and NHS Improvement, and is near to being published; I had the privilege of being consulted on the final draft. It sets out core principles that such planning must always be a voluntary process and that every effort must be made to help someone express their views and preferences. The person is central to developing and agreeing their advanced care plan with agreed outcomes that are shared in partnership with relevant professionals. They have a record of the shareable plan and are encouraged to review and revise it so that they can change their mind at any time. In addition, anyone involved can speak up if they feel that the principles are not being followed.

The very sensitive approach set out in the guidance recognises that people have different levels of preparedness for such conversations; that their perception of their illness evolves over time; and that, in the crisis of being given a diagnosis or told of disease recurrence, the views that a person expresses may subsequently change as they reframe their experience. The first step is to start with an exploration of how much the person wants to be involved, what matters to them, and the pace and language that matches the person, as well as that they are listened to and understood.

The amendment asks for a “relevant authority” to

“have regard to the needs and preferences recorded … in making decisions about the procurement of services.”

I hope that the Government can see that, by providing specialist palliative care as a core service, the type of bureaucratic delays that would be involved in procuring services would be completely replaced by a rapidly responsive specialist service that can address the person’s needs in all domains. The amendment also uses the term “relevant person”. If it were used as in the Mental Capacity (Amendment) Act, that person could turn out to be the care home manager, who may actually have competing interests and therefore is inappropriate.

A comprehensive survey of over 2,000 people by Cardiff University’s Marie Curie research department reported that people listed their top priorities towards the end of life as timely access to care at 84%, and being surrounded by loved ones at 62%. Being home was a priority for only 24%.

This is a well-intentioned amendment but it has now been replaced by the extensive consideration of the consultation and production of comprehensive guidance.