Assisted Dying Bill [HL]

Baroness Finlay of Llandaff Excerpts

Friday 16th January 2015 Lords Chamber

Moved by

[Baroness Finlay of Llandaff]

13A: Clause 2, line 2, leave out “registered medical practitioners” and insert “licensed medical practitioners who are on the General Practice or specialist register”

[Baroness Finlay of Llandaff (CB)]

My Lords, I shall speak briefly to my Amendment 13A but I also have other amendments in this group. If I am procedurally correct, I should address only Amendment 13A at the moment and address the other amendments in the group afterwards. I am looking for confirmation from the Minister that that is correct.

[Baroness Garden of Frognal (LD)]

The noble Baroness may speak to all the amendments in the group.

[Baroness Finlay of Llandaff]

Thank you. I apologise for requiring clarification on that. I did not want to make things difficult for the Committee.

I tabled Amendment 13A because, as has been alluded to, doctors can be registered with the General Medical Council but not licensed to practise. To be licensed to practise means that one has been revalidated after an annual appraisal, and may maintain one’s clinical professional competencies. However, that is not enough for a matter of this gravity. One does not want decisions to be taken by doctors who perhaps are still in training, or not in a specialty but doing sessions in it, or whatever. The additional requirement should be that they have completed their training and therefore be on the general practice register or the specialist register, which would mean that they are recognised as having completed their specialist training and would be able to apply for a consultant post.

[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.

[Lord Butler of Brockwell (CB)]

Is it not right to remind the House that, if there is a misdiagnosis of that sort and survival continues, people are not obliged to take the final drug? It is just available to them. They can survive.

[Baroness Finlay of Llandaff]

I am grateful to the noble Lord for that intervention. If they have been misinformed—it is not the diagnosis of the disease that is wrong but the prognosis—and they then take the lethal drugs, they are not there to outlive the wrong prognosis.

[Lord Winston]

I might be able to assist the noble Baroness’s arguments slightly. Is not the whole House aware of one of the most famous cases, the person accused of the Lockerbie bombing? He was examined by numerous doctors, in particular Karol Sikora, who is probably the leading cancer expert in the country, who, after great consideration, considered that this man had only three months to live. He was therefore allowed to leave the United Kingdom. In fact, I think he survived for either three or four years.

[Baroness Finlay of Llandaff]

I am grateful to the noble Lord for that illustration, which is very clear and well known to all Members of the House. It is for that type of reason that I have proposed the removal of the word “reasonably” from Clause 2(1)(b) of the noble and learned Lord’s Bill.

A number of clinicians have tried to predict prognosis—for instance, whether to take the risk of a heart or lung transplant, and when to introduce palliative care in non-cancer services for the frail elderly. However, they have found that they just cannot determine time. Prognostication is reasonably accurate on the population level but, as the noble Lord, Lord Winston, has just illustrated, it is not accurate at an individual level at all. It is no better than tossing a coin. Indeed, different studies have shown that a prognostication expecting someone to live for more than a year is not too awfully wrong. Similarly, expecting somebody to die within a month is more likely to be accurate than inaccurate. However, in the interval in between you honestly could toss a coin on it. It is for that reason that I suggested that, if the prognosis in the Bill really is to deal with those people who are distressed during their dying phase, the prognosis section should be shortened to six weeks.

There are other aspects to prognostication that I will point out to the noble and learned Lord, Lord Falconer. The national clinical director for end-of-life care told the commission that he chaired that predicting the course of a terminal illness is “fraught with difficulty”. In 2004 the RCGP made the same point to the Select Committee chaired by the noble and learned Lord, Lord Mackay:

“It is possible to give reasonably accurate prognoses of death within minutes, hours or a few days. When this stretches to months then the scope for error can extend into years”.

The Royal College of Physicians, giving similar evidence, said that,

“prognosticating may be better when somebody is within the last two or three weeks of their life … when they are six or eight months away from it, it is actually pretty desperately hopeless as an accurate factor”.

More recently, we have seen in the report from the inquiry into the Liverpool care pathway, chaired by the noble Baroness, Lady Neuberger, how prognoses of death within 48 hours have sometimes turned out to be wrong. The report called for further research into improving the accuracy of prognosis within the last weeks to days of life.

Yet, in the face of all this evidence, we are being asked to consider legalising assisted suicide or assisted dying for people with a prognosis of six months. The only conceivable explanation is that that is what Oregon’s assisted suicide law says. However, Oregon’s law has been shown to be fallible in the matter of prognosis. Oregon’s own data show that the time from the first request to death by whatever cause, whether through physician-assisted suicide or natural causes, ranges from 15 to 1,009 days, which is two years and nine months. Washington’s data show that, among those being given a prescription for lethal drugs and therefore expected to die within six months, the range was three to 150 weeks. I note that, in every year of that legislation since it has been passed, patients have lived well beyond 24 weeks or six months. The percentage ranges from 5% to 20% of a request for death.

The plain fact is that prognosis of “terminally ill” is highly unreliable over a range of six months. The DS 1500 has been used as a way to allow patients to access benefits rapidly, without having to go through assessment hoops. However, as those who have filled them out know only too often, it is only a guesstimate. Very often, patients vastly outlive the prognosis. We have had to have difficult conversations about how they should now go through the complete assessments. I tabled a Question to ask whether the Department for Work and Pensions collected data on the DS 1500. Unfortunately, it does not. It would be interesting to know for how many months that benefit had been drawn.

The plain fact is that this is unreliable. As a practitioner in the field, I can count the number of terminally ill people whom I have treated. I have not tallied them up among the thousands that I have looked after, but I could bore this House for weeks with the number of clinical stories of people who were expected to die within six months and who stayed alive for much longer. Those are the reasons behind these amendments. I hope that those who are arguing sincerely that the Bill aims to try to improve the dying process in those last days and weeks of life will seriously consider that they are asking people to make a prediction on which there really is not a scientifically accurate basis.

[Baroness Meacher]

The noble Baroness placed a great deal of emphasis on accuracy. Those points completely fail to take account of the fact that we all have a great will to live. Just because the individual finally has control and some autonomy does not mean that they will rush out to try to take some pills. I feel that this is a completely misguided set of arguments. The most important thing about the Oregon law, which has been in place for 17 years and works extremely effectively, is precisely that some people live for three years. They do not take their lives; they live for three years until life becomes unbearable. It is only at that point that they take the pills or whatever it is. We have to be very careful not to be misled, albeit one can come back with arguments that most doctors exaggerate the length of time that they expect people to live. Even that is not the point.

[Baroness Finlay of Llandaff]

When we legislate we need to know that there is accuracy attached to the terms. If we are asking doctors to make a declaration or statement of prognosis, they must at least know that there is some scientific basis behind it. In making a decision, there are three fundamental issues; first, the person must have accurate information; secondly, they must have the mental capacity to make that decision; and, thirdly, it should be voluntary and free of coercion. If you make the decision to end your life because you believe that what lies ahead in the next weeks and months is so terrible but, in reality, you might have improved dramatically and lived for years if you had had the care you needed, then I would say that you are not being supplied with accurate information and that it is therefore not a valid decision.

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[Baroness Finlay of Llandaff]

Before the noble Baroness finishes, will she acknowledge that, quite often, when patients do not undergo further intervention and further treatments they dramatically improve? Indeed, a very good study from America showed that where people had early palliative care, not only was their quality of life better but they lived longer. They were having fewer interventions, not more. The difficulty with all this is that conditions fluctuate. Patients at one point in time cannot believe that they could improve. It is often stated by patients, when their symptoms and their distress are under control, “I never believed I could feel this well again”. When they are in that trough, they are of course inclined to believe that it will go on for ever and that they will go on going downhill and therefore want to curtail their lives.

[Baroness Brinton]

I accept the noble Baroness’s premise that it is vital for medical practitioners to set things out. As I have said, the counterargument to that is that data from Oregon and some other states in America show that people do not make the decision and implement it immediately. There is always a timescale, because I believe that, intrinsically, most people really hope that things will improve.

When the measure has been used in America, it has usually been because there has been such a downturn, when medical practitioners have said to the patient that they cannot help them further. I understand that there will be some people for whom they are seriously concerned and may want to turn to it, but I would also think that a medical practitioner would ask them whether they are depressed at that particular moment and whether it is the right time to make that decision. This Bill allows the practitioner to say, “I don’t think you’re ready for that decision at this particular time”.

I want to say why I believe that the amendment in the name of the noble Baroness, Lady Finlay, is a tripwire. I have been on a series of drugs for my particular condition. My local clinical commissioning group insisted that I went on a drug knowing that it would not work particularly well for me, but would not allow me to have treatment afterwards if I did not have that drug. For six months, I had the drug and it is one of the reasons why I am in a wheelchair, because my condition deteriorated. My worry about the amendment is that it is such a tripwire and could be used to cause real distress to people who are quite clear that they do not want further treatment. To use that to prevent them getting any other treatment or making their own decision seems intrinsically wrong.

[Baroness Finlay of Llandaff]

My Lords—

[Lord Warner]

My Lords, I want to pursue the line of argument that the noble Baroness, Lady Brinton, has started. I agree with the noble Lord, Lord Carlile, that this is an important group of amendments. The noble Baroness has raised the issues of practicality and, possibly, unexpected consequences of some of the amendments.

I want to reinforce the point about the impracticability of Amendment 13. It fails to reflect the fact that in many cases of terminal illness a person will move from the place where the illness was diagnosed and the care of their consultant and GP to somewhere else. We have a National Health Service. You still get treatment if you move from A to B; medical records pass from A to B most of the time, reasonably successfully. The care of that person will be transferred to another GP and another medical practitioner. They may well not have had care of that person for six months. It may simply be impossible to operate Amendment 13 in the case of people who are terminally ill. We need to reflect on the practicality of that argument. I do not believe that the noble Lord expected that consequence from his amendments. That was the point that I was going to ask him about if I had been able to intervene a little earlier. I am happy to give way to the noble Lord.

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[Lord Empey (UUP)]

My Lords, one is reluctant to become involved in a debate when so many noble Lords with senior medical and legal experience have been putting forward their interpretations. However, I want to deal with a couple of matters. With this amendment, the noble Lord, Lord Carlile, is clearly adding that a medical practitioner will have to have significant knowledge of the patient.

I want to speak on this issue because I feel that the Achilles heel of the whole Bill is that it is built on sand. It works only on the assumption that the medical profession will deliver it, whereas it is obvious to most of us that the vast majority of the medical profession do not want to deliver it. That leads us to what may be the essential contradiction or conflict in the amendment. A number of noble Lords have said that specifying six months would be an overburdensome requirement. Therefore, we have the dilemma that either you have a medical practitioner who knows the patient, knows the condition and knows how that patient is likely to react to certain drugs, or you have a complete stranger who comes in and makes a judgment on the spot, having read a medical file. I fear that a rent-a-doctor procedure will develop and will distil down to those who are prepared to do it, and that, in my view, will create a whole series of new problems.

I want to raise another point regarding these amendments. We talk about having conversations, discussions and processes. I represented an inner-city constituency for more than 25 years and my question is: with whom and at what time are people going to have these discussions, conversations and processes? At the moment, nurses hardly have time to feed patients on their ward, let alone to involve themselves in very complicated and difficult conversations, discussions and processes.

Therefore, looking at the modern-day NHS and all the pressures that it is under, to some extent we are adding a further pressure without the active support and consent of the medical profession. Also—this is the one thing that I worry about more than anything else—we are changing for ever the potential relationship between a doctor and a patient. In an inner-city area, the ordinary person will say, “Oh, here comes Dr Death. How can that person help me on the one hand and put my lights out on another?”. I fear that that is how this will be distilled down to street level.

In the amendment, the noble Lord is clearly trying to put in place the safeguard that the patient will at least be dealt with by somebody who knows him or her. I understand that and accept the rationale for it. However, there are practicalities, which have been raised by others. With inner-city practices, it is hard enough to get the patient to go to a doctor in the first place, but if they think that that doctor could at some point in their lives, as they would say, sign them off, will the amendment achieve the worthy objective for which it is meant?

The word “control” has been used a number of times. I think the noble Baroness, Lady Meacher, and others used it. One can see that people would want to have control over their lives. It could happen to any of us. But in the real world out there, many people who are seriously ill may not have the means. They do not have access to the courts, money or knowledge. Control may be all right for those of us in this House, but it is not always available to the ordinary person in the street. That is where I believe there is a fundamental weakness in this. Without the act of involvement of the medical profession who really want to do something, we are forcing them into a corner. It will inevitably boil down to a handful of doctors who will go around the country signing off people they do not know.

[Baroness Finlay of Llandaff]

The noble Lord made some cogent points in relation to this group of amendments. He made me wonder whether he thinks the solution may be that the discussions could happen earlier but the provision of the assistance to end life should be much later. The timeframe could change. Discussion of whether someone is terminally ill could start much earlier, and could therefore take more time, but the delivery of the lethal drugs could happen much later. For clarity, they are not morphine or heroin. The drugs are a massive overdose of barbiturates, which is completely different and would never be used therapeutically. That is the way that you end people’s lives under the Oregon and other legislation. That might be a solution. I also ask the noble and learned Lord, Lord Falconer of Thoroton, whether he would consider that type of solution in looking again at the clause.

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[Baroness Finlay of Llandaff]

I am grateful to the noble and learned Lord for having finally got on to the timeframe issue and for his acknowledgement that, on a balance of probabilities, things are more likely to be accurate within a shorter timeframe than at six months. Does he accept that it might be worth considering uncoupling the time in which the discussions can occur from the time within which the prognosis indicates that it is eligible for the lethal drugs to be taken to the patient? That was the question that I asked the noble Lord, Lord Empey, and on which the noble Baroness, Lady Symons, came in, but the noble and learned Lord has not answered that question at all.

[Lord Falconer of Thoroton]

I apologise to the House for taking so long to get on to the point about six months versus six weeks. I very carefully considered whether one should say that, once you have a diagnosis of six months to live, you should be able to have the discussions but only be able to take the drugs within six weeks. I am strongly against that.

[Baroness Finlay of Llandaff]

I—

[Lord Falconer of Thoroton]

If I may finish, the reason I am against it is that once the diagnosis is given by the doctors, there is a process that will take a considerable time, and that once the court has approved the process and said that somebody should do it, it should be for them to decide when they do it. It would be an unsatisfactory and, I suspect, an unenforceable process to have to go back and get a doctor to say that you have six weeks or less to live. I thought carefully about that point before it was raised. It is not referred to in any amendment and I assumed that nobody had properly considered it. I am against it.

[Baroness Finlay of Llandaff]

If I may come back on that, does the noble and learned Lord recognise that those discussions are currently being had with patients, day in and day out, up and down the country? It is not as if the Bill, as some noble Lords implied, would be the way in which people start talking about their dying because it should be a routine part of clinical practice, as laid out in the GMC guidance. However, I do not think that he has yet answered my question on whether there would be merit in uncoupling those discussions and that process from the time at which the drugs were delivered. If I hear him right, he is saying that when you are in that zone of complete uncertainty and could toss a coin on it—you might die within six months or, as the noble Lord, Lord McColl, said, within three years; indeed, in the case of some of my patients you might die within 10 years, as it happens—the fact that the doctor has mistakenly said that he believes you are terminally ill would suddenly give the message that you should be considering having an assisted suicide. That would probably start to trigger these discussions. That is the danger in not uncoupling them.

[Lord Falconer of Thoroton]

I thought that I had answered the question but I will answer it again. A doctor has concluded that he or she reasonably believes that you have six months or less to live; another doctor has confirmed the diagnosis; and the courts have concluded that it is an appropriate case for an assisted death. Thereafter, my view—I should be clear about this—is that you should be entitled to have an assisted death as prescribed by the Bill. I am therefore against the decoupling of the beginning of the process from the time at which the drug could be taken.

The noble Baroness says that these discussions are taking place at the moment. No, they are not; the discussions taking place are about how somebody wishes to die. It does not involve discussions about assisted dying in the context of my Bill because that is not permitted at the moment, so this is dealing with a new situation. My clear answer to her is that I am not in favour of the decoupling. My proposition is that if two doctors certify and the court says yes, once that process has been gone through, it is for the patient to decide the moment he or she takes the drug, and there should not be another process for a doctor to certify that the patient has six weeks or less to live.

I shall deal with the other points raised in this group. First, for reasons I just cannot understand, the noble Lord, Lord McColl, and the noble Baroness, Lady Finlay, suggest that where the Bill states,

“reasonably expected to die within six months”,

or less, the word “reasonably” is deleted. That seems unwise. In my view, it is appropriate that a doctor giving such a diagnosis has a proper and reasonable basis for doing so. I am against that change.

In the context of the amendment moved by the noble Lord, Lord Carlile, the noble Baroness suggests we refer to a “licensed” practitioner rather than a “registered” practitioner. Although I do not agree with the amendment moved by the noble Lord, Lord Carlile, the point that the noble Baroness, Lady Finlay, is making appears to me to be a good one. We should discuss, outside the Chamber, the precise language. The noble Baroness, Lady Murphy, has an amendment that puts the language in a slightly different way. We are all concerned to allow this to be done only by doctors who have the appropriate qualification and are in practice. I am happy to agree an amendment that reflects that.

The noble Baroness, Lady Campbell, made a number of powerful submissions in relation to how this affects disabled people. The noble Baroness, Lady Brinton, responded to them and made it clear that disabled people can have different views about the adequacy or otherwise of the Bill. I was very struck by the reference to “The Theory of Everything” and Stephen Hawking, who is, in fact, in favour of some process of assisted dying.

The underlying anxiety that has been expressed to me by disabled people is that if we pass an assisted dying Bill, we in some way devalue the lives of disabled people and put them more at risk. I do not believe that we devalue disabled people in any way by passing this Bill. I believe it is incredibly important that disabled people have exactly the same options as everybody else when they are terminally ill. I also believe that the safeguards in the Bill are much stronger than the existing safeguards in relation to decisions about treatment. I completely echo the point that the noble Baroness, Lady Brinton, made: this will not be forced on anybody. It is an option to be asked for, and even when asked for, it can be given effect only when two doctors have certified that it is appropriate and the High Court of Justice has said that it is okay. Having spoken widely to disabled people, I do not believe that it puts them more at risk than the population as a whole. Although I, like everyone else in the Committee, am very moved by what the noble Baroness, Lady Campbell, said, I do not accept the criticism that she makes in relation to the Bill.

I think I have dealt with all the main proposals. This has been a very worthwhile debate. The areas where I think further discussions would be of value are in relation to the “doctor for hire” proposition and how we properly identify the qualification required for a doctor. In relation to the other proposals, I am broadly against them.

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[Lord Falconer of Thoroton]

The Oregon experience is that that does not happen, but the safeguards—two doctors, and the High Court judge approving it—are in my view sufficient to prevent the sort of abuse to which the noble Baroness refers.

[Baroness Finlay of Llandaff]

I am grateful to the noble and learned Lord for having responded to the question about the qualification of doctors, which is an amendment to the amendment in the name of the noble Lord, Lord Carlile. I will make just a couple of points in response. One is that I am glad to see that the noble and learned Lord recognises that the way the Bill is currently drafted is a problem and that you need doctors with experience, but I wonder how he will achieve that. Clause 3(7) requires, rightly, that the doctor holds an appropriate qualification. However, yesterday the Association for Palliative Medicine published the results of its consultation with its members, which had a very high response rate and showed that only 4% of palliative medicine doctors who are licensed to practice are prepared to have any involvement in this process. Therefore if the conscience clause is to have any meaning, it is something to which we need to return, and I welcome the noble and learned Lord’s commitment to engage in discussions over it. We will come to other amendments later, which I have tabled, on how we might solve the problem, but I do not think that we will get to them today. I beg leave to withdraw the amendment.

Amendment 13A withdrawn.