Assisted Dying Bill [HL]

Debate between Baroness Jay of Paddington and Baroness Finlay of Llandaff

Friday 16th January 2015 Lords Chamber

[Baroness Jay of Paddington (Lab)]

I apologise to the noble Baroness and realise that she will speak to the other amendments to which she has put her name. Would it not be much simpler to agree Amendment 15 to which she has also put her name but is primarily in the name of the noble Baroness, Lady Murphy, who unfortunately cannot be here today? That amendment simply does what the noble Baroness, Lady Finlay, has just described by inserting “registered” and “licensed” into the Bill.

[Baroness Finlay of Llandaff]

I am most grateful to the noble Baroness for that intervention because it allows me to clarify that I think that such doctors should, in addition, be on the general practice or specialist register for the reasons I have just outlined. Indeed, I was grateful to the noble Baroness, Lady Murphy, for having picked up a point that came in later amendments that I have tabled in relation to the doctors involved.

I shall proceed to speak to the other amendments, however. Clause 2 of the noble and learned Lord’s Bill caters for people who have been told that they have a terminal illness and are expected to die from it in the near future—within six months. Such situations exist; most of us will know of people who have been in this position. However, terminal illness is, I am afraid, a much more complex matter than that. There is a tendency to think that people who are terminally ill are somehow a group distinct from others who are not, but the reality is very different.

Yes, there are people who were apparently healthy but have discovered that they have a malignancy or other condition that seems likely to bring about their death in the not-too-distant future. However, many more people have conditions—for example, multiple sclerosis, Parkinson’s disease or heart disease—that are incurable and life-shortening and which, at some point in the future, can be expected to result in their death. All these conditions would fall easily within the definition of terminal illness, as described in the Bill, which is,

“an inevitably progressive condition which cannot be reversed by treatment”.

But that is not enough. Some conditions are progressive and cannot be reversed by treatment, but the underlying cause may be curable—hence the insertion of “direct”, so the provision would state that as a “direct consequence” of the disease the person is expected to die.

However, there is another aspect to treatment that matters. Some conditions can now be so significantly halted in their progress that the person’s life expectancy lengthens and their quality of life improves dramatically. These are people who at one time appeared to be terminally ill, or even actively dying, but have responded so well to treatment that they no longer fit the definition. I hope that the noble and learned Lord, when he responds, will clarify just how six months will be determined.

The noble and learned Lord will no doubt point out to us that the Bill contains another parameter of terminal illness—namely, that the person seeking assistance with suicide not only has a progressive condition but is reasonably expected to die within six months. It is true that not everyone with a progressive and incurable condition is expected to die in six months, but it is necessary to recognise that the Bill as it stands would bring within its ambit not only people who have been told that they are terminally ill but everyone with moderate-to-severe progressive and chronic illness. After all, how often have noble Lords said, “I would not be surprised if so and so died within the next six months”? Indeed, I regret to say that that has been said within this Chamber about noble Lords at times—and yet, fortunately, they have reappeared on these Benches a long time after those six months. Perhaps they might be described affectionately as a “creaking gate”. It is important to recognise that fact because it has a bearing on the question of prognosis.

Let me illustrate the point with a specific example. A colleague of mine in his late 60s had very brittle type 1 diabetes, episodes of heart failure—the prognosis for which is usually worse than for cancer—and other co-morbidities. All his colleagues thought that he would be dead soon. Over several years, I and others have reasonably expected him to die within a few months. Over 10 years or more, at any point in time, I or another doctor would have stated that he could reasonably be expected to die, but he has not. I have had many patients who I really thought were dying. I have sat the family down and told the patient that I really thought that their life expectancy was in months. However, by our going back and rigorously looking at things again with meticulous attention to detail, they have vastly outlived the prognosis, not only by months, but fortunately often by years, with a good quality of life.

I ask the noble and learned Lord to clarify whether the Bill is designed to include cases where the prognosis might be much longer. In his Second Reading speech, he suggested that the Bill purports not to do that. That is why I have proposed the insertion of the word “direct”: the patient must be expected to die not because he is very old or has multiple co-morbidities but directly from that terminal illness.

Health and Social Care Bill

Debate between Baroness Jay of Paddington and Baroness Finlay of Llandaff

Wednesday 8th February 2012 Lords Chamber

[Baroness Jay of Paddington]

My Lords, the House will be aware that the second report of the Constitution Committee on this Bill suggested amendments in this area, precisely for the reasons well outlined by the noble Lord, Lord Marks, and as expressed by the Minister. We were concerned that the way in which the Bill was originally framed would dilute that line of responsibility through the Secretary of State and that the provisions on autonomy were such that that link would be broken, or at least threatened.

I wish to explain briefly why, although the committee produced amendments that are very similar to the ones tabled by the Government and supported by the noble Lord, Lord Marks, I have not put my name to them. That is simply because the wording of the government amendment is not as simple as the one that the Constitution Committee supported and wished to see in the Bill. We suggested:

“Subject to sections 1(1) and 1(3)”,

which we discussed on government Amendment 5,

“and so far as is consistent with the interests of the health service, the Secretary of State must, in exercising functions in relation to that service, have regard to the desirability of securing”,

et cetera. Clearly that is very close to the wording of the amendment tabled by the Government. The Constitution Committee is particularly grateful for the phrase “having regard to”, as the Minister has explained. We were not in a position to discuss the change in formulation that has occurred, and we have yet to listen to my noble friend Lady Thornton, but as there were members of the committee who, like me, would prefer to see this clause deleted, I have not put my name to this amendment although I understand that it is very close to the one that the committee originally suggested.

[Baroness Finlay of Llandaff]

My Lords, I wish to raise some questions because I have put my name to the amendment suggesting that Clause 4 be deleted. The Government’s guidance notes published with the amendment that has been tabled appear to make the duty of autonomy subject to the Secretary of State, but there is ongoing concern that there remains the risk that the clause could be used by clinical commissioning groups to justify not providing a full range of services or putting inappropriate services out to tender. While local organisations should have the freedom to respond appropriately to the health needs of the population, local commissioners should not be able to act totally autonomously and commissioners must have regard to national guidance. In his closing summary, the counsel to the chair in the Francis inquiry pointed out that there is a need for far greater standardisation of operating and quality standards in the NHS and close monitoring of compliance.

Concern about the inclusion of Clause 4 continues to lead to some uncertainty, confusion and concern about how competition would be applied in the new system. Phase 2 of the Future Forum recommended that the Government clarify the rules on choice, competition and integration. The concern is that if the restraint on autonomy is not as tight as it possibly ought to be, services could fragment. The Government need to clarify that integration will trump competition. I ask the Minister to clarify that the national Commissioning Board will be prepared to intervene if clinicians feel that the type of competition that is being proposed could fragment services. We have heard quite a lot about commissioning along whole-care pathways, such as musculoskeletal services and mental health services, and in whole-function areas, such as community services. There is concern that where this has happened in the east of England with musculoskeletal and respiratory pathways, there is a sense that they should have been put out to tender more than they have been. There is concern that there are times when whole-care pathways should not be subject to competition. The difficulty with the clause is that it leaves in doubt how much integrated whole-care pathways, which may not leave complete autonomy to different parts of the system, will trump competition between different parts of the system.