There is also a world of difference when making a decision between being told about something and having had first-hand experience of it. I offer this quote from the report of the Select Committee which, under the chairmanship of my noble and learned friend Lord Mackay, 10 years ago examined the Assisted
Dying for the Terminally Ill Bill of the noble Lord, Lord Joffe. The committee’s report recorded evidence from Help the Hospices, as it was then called, as follows:
“Experience of ... pain control is radically different from the promise of pain control, and cessation of pain almost unimaginable if symptom control has been poor. On this view, patients seeking assistance to die without having experienced good symptom control could not be deemed fully informed”.
Specialist palliative care embraces the holistic care of the individual and those around them, considering not only their physical or medical symptoms, such as pain, vomiting or breathlessness, but also their spiritual, social and psychological needs. When distressing physical symptoms overwhelm a patient, they cannot see beyond the pain, the breathlessness, the anxiety or the vomiting. Effective symptom management enables a person to re-emerge and function once more, and to make informed choices regarding their future. Without such experience, my contention would be that the applicant’s capacity to make informed choices is seriously impaired.
The chief executive and the medical director of the hospice of which I have the privilege of being patron do not, as far as I am aware, take a position either for or against the Bill. However, they agree with this amendment and have this to say:
“We see every day how very limited is the understanding and knowledge of Palliative care services among both patients and professionals. Most people resort to these services only when they have a need of them”.
This view of course contradicts that expressed earlier by the noble Baroness, Lady Murphy, earlier in the debate.
4.30 pm
There is still in some quarters a residual perception of a hospice as a sort of enhanced care home licensed to drug patients to the point of insensibility. Even in your Lordships’ House, I make no apology for repeating the very important fact that here in Britain, many people, including the noble Baroness, Lady Finlay, are pioneering a highly specialist care model which I would guess is world-beating—a point also made by my noble friend Lord Howard—and it continues to forge ahead. Progress is made daily in such areas as the enhancing the effectiveness of morphine through the use of co-analgesics, nerve blocks and new drugs. I could go on. Palliative medicine aims to combine sound medical science and exceptional attention to symptom control with the art of giving people support, hope and the ability to plan their future with their illness.
This is the background against which I propose that if a person seeking assistance with suicide has not previously had a consultation with a specialist in palliative care, he or she should be referred for such a consultation. This will ensure, apart from anything else, that the person seeking assistance with suicide will hear about end-of-life care options from the experts in that area of medicine rather than from the attending doctor. The attending doctor referred to in the Bill is very unlikely to be such an expert, given that 90% of palliative care practitioners are opposed to physician-assisted suicide. An important element of such a consultation is to give the patient an opportunity to
hear how modern pain relief and symptom control work. There is a considerable mythology surrounding this subject, with many people believing that increased dosages of pain relief put a patient’s life at risk and that terminal illness therefore means increasing pain. This is simply not the case in modern palliative medicine. While it is not possible to give an absolute guarantee of pain relief in every case, proper palliative care can in most cases reduce, if not eliminate, the pain of terminal illness without any risk to the patient’s life. A terminally ill person contemplating suicide needs to hear this, and to hear it from an expert in this field of care.
A palliative care referral will also give the applicant an opportunity, if he or she wishes, after discussing end-of-life care options with a specialist, to request a course of palliative treatment to ascertain whether that, rather than suicide, would meet his or her needs. Some may well say, after experiencing such treatment, that they still wish to proceed with assisted suicide. So be it, but if even just a handful change their minds, the exercise will not have been in vain.
I recognise that this is another step in the assessment process and that some will argue that it adds to the burden of ending one’s life, but it is crucial that any such decision is fully informed. Even in Belgium, whose euthanasia law has raised serious concerns, there is provision for hospitals to insist on such a palliative care filter, as it is known. In fact, where Belgium is concerned, noble Lords might care to note that well over 90% of requests for euthanasia in that country vanish when applicants experience the palliative care that they need.
I recognise also that specialist palliative care is not evenly available to everyone in this country, but I feel, given the gravity of what is being proposed here, that it is incumbent on us to ensure that a fully informed decision means something more than just a chat in the consulting room of a doctor who, as likely as not, lacks an appropriate level of expertise in end-of-life care. This amendment in its own right has the potential to bring relief to many who face physical and mental anguish, but it goes further: it provides a vital safeguard that certainly needs to be a feature of the Bill.
Lord Harries of Pentregarth: I shall speak briefly to my Amendment 8 which would ensure that any request for assistance is voluntary. The House is agreed on the need for a voluntary decision, but the question is how you ascertain that the request really is voluntary.
I refer to a later amendment in my name, Amendment 69, which says that the person must not be under pressure or duress from others or from a sense of obligation or duty to others. Noble Lords have touched on this once or twice because it is a matter of huge concern, but we have not yet had a thorough debate on this issue. The noble Baroness, Lady Warnock, wondered why it was such a bad thing to have a sense of obligation or duty to others. That is a good question. The trouble is that the remarks we make are never made in isolation; they are always made to other people. If a person says out loud, “I am beginning to feel a bit of a burden”, somebody may hear that remark. As the noble Lord and learned Lord, Lord Mackay of Clashfern, and the noble Lord, Lord Deben, said so movingly, you want
to give such a response that the person will know that, despite everything, they really matter. Within all the subtleties of a relationship, you might say something like, “You are certainly worth that and a great deal more”. In order to ensure that the request really is voluntary and there is not that kind of subtle coercion, Amendment 69 also says that the doctor must have in-depth discussions not just with the person but with the family and people close to them.
The reason why this matters so much was brought home to me a couple of days ago when I received a letter from somebody saying that a relative of theirs had gone into a hospice for temporary respite and one of the nurses said to them,
“Oh, don’t you think it would be better for you to stay here instead of going back”,
to your daughter-in-law’s place?
“She works ever so hard taking care of you; don’t you think you are a bit of a burden to her”?
That was a very unfortunate remark, but people do make unfortunate remarks and they weigh on them.
The reason why this is such a key issue can be seen from the figures and research in Oregon and Washington. Both states collect data on the end-of-life concerns behind people’s decision to seek assistance with suicide. Contrary to popular impression, the data reveal that inadequate pain control is one of the least common concerns behind a request. In 2013 only 28.2% of those who sought assistance with suicide indicated inadequate pain control as a concern. Alarmingly, and more commonly cited, is a concern about being a burden on family, friends or care givers. In 2012, 63% of those in Washington cited this as a concern. In the same year, only 33% cited poor pain relief. Responses from Oregon reveal the same pattern. Since legislation was passed there, concern about being a burden has increased as a motivator from 13% in 1998 to 49.3% in 2013. This is a matter of huge concern and I hope that the noble and learned Lord, Lord Falconer, will take the concerns of the whole House on board when he looks again at his Bill.
Lord Howarth of Newport: My Lords, I added my name to the amendments in the name of the noble and right reverend Lord, Lord Harries of Pentregarth. I am glad that we have the opportunity to spend a few moments examining this question of the nature of voluntariness in the circumstances for which we are seeking to legislate.
There can be a multitude of pressures on people who are ailing or nearing death; people who find themselves in a situation in which they consider that they may wish to seek assistance in their suicide. I know that my noble and learned friend Lord Falconer, in the drafting of the Bill, has sought very clearly to preclude situations in which anyone is driven by coercion or duress to a decision of this nature. It is going to be very difficult to ensure that those conditions are satisfied, whether in the context of the original Bill or whether in the Bill as modified by the amendment in the name of the noble Lord, Lord Pannick. There are the most overt and obvious pressures coming, perhaps, from family members who are exhausted, angry and grudging, and who may not love the person they find themselves
having to care for. There are, as my noble friend Lady Mallalieu mentioned this morning, circumstances in which family members are actually motivated by venal considerations. They want to stop spending all this money on the costs of care and hurry up their inheritance. Although it is most unpleasant to think of these possibilities in human nature, they do exist and we cannot ignore those possibilities.
There could also be pretty overt pressures from professional carers and doctors who are under pressure, working with inadequate resources, impatient, testy and frustrated themselves. We can see a range of possibilities, from inadequate but well intended care, going all the way through to the kind of institutionalised callousness that was reported at Mid-Staffordshire and Winterbourne View—situations of elder abuse. In a sense, it should be easier to preclude people coming to a decision to seek to end their own life with assistance in such obvious circumstances. However, there are then the subtler situations, in which someone has perhaps been pressurised unintendedly by a person whose gesture or facial expression was not meant to be seen by the relative or person for whom they are caring and was interpreted by that person to signify that they were a nuisance or were no longer wanted.
In her speech at Second Reading, the noble Baroness, Lady Campbell of Surbiton, talked of the pressures of pity and how pity can be experienced as contempt and as a signal that your life is not worth living. There are tacit pressures that could arise even from the availability of the remedy that this legislation would make legal—its tendency to normalise the practice of assisted suicide and, going with that, a tendency to diminish trust between patients, sufferers and those who have responsibility for their care. A number of noble Lords have spoken of the risks of an altered ethos in the medical profession. Of course, people who are old and ill and costing the NHS or their families a lot of money may simply felt that they ought to stop incurring such expenditure. If people internalise such pressures and arrive at a sense that their continued existence cannot be justified and they do not have the self-worth they once had, if they feel guilty and that they are a burden on their families and the system, are we to say that these are decisions freely taken? The noble Baroness, Lady Warnock, in her speech at Second Reading proposed to us that people could proudly and honourably—admirably—come to a decision that they should not be a burden on others. Is that a freely-made decision when such pressures have been psychologically and emotionally internalised? It is a difficult question to judge.
Lord Avebury: I wonder whether the noble Lord has ever looked at the Macmillan Cancer Support site, on which there is a forum for people with incurable cancer. If he looks on that site, he will find that no patient has ever expressed the view that they are a burden on the National Health Service. It has never come up at all.
Lord Howarth of Newport: I will certainly look at that site, but I wish I could be as confident as the noble Lord is on that point.
I will conclude by saying that I think it is going to be very difficult for doctors ever to be certain that a decision has been arrived at on a truly voluntary basis, freely. It will be equally difficult for the judge that the noble Lord, Lord Pannick, has brought in to the proceedings. As the Minister, the noble Lord, Lord Faulks, put it to us earlier, there is a risk that pressures and duress will never be wholly eliminated.
4.45 pm
Baroness Howe of Idlicote: My Lords, my Amendment 7 is a very simple one which deals with an issue that might arise as a result of the Bill—what one might call suicide tourism. I am sure that it is common ground between those who support and those who oppose a change in the law that we would not want to see any such law being abused by people from other jurisdictions travelling here to commit suicide. I feel sure that that is what the noble and learned Lord, Lord Falconer, had in mind when he included a requirement in Section 1 that an applicant for assistance with suicide must have been ordinarily resident in England and Wales for not less than one year. I certainly applaud the intention of that provision, but I fear that it does not go far enough.
Let us consider a hypothetical but far from impossible situation of a couple who have lived in England and Wales then retired to the Costa Brava. One of them is diagnosed with a terminal illness and wishes to take advantage of a law along the lines of the one proposed here, so he or she returns to this country and qualifies as having been resident in England and Wales for more than a year, but not for a year immediately preceding the application. And what about Scotland? Returning home from the Costa Brava is one thing; coming south into England is something else. There must be thousands of people who have been ordinarily resident in England and Wales for not less than a year but who, at a time when they may wish to avail themselves of a law along the lines of the noble and learned Lord’s Bill, are living north of the border. Are they to qualify for assistance with suicide, too?
It is a simple matter to guard against such suicide tourism by stipulating that the applicant for assistance with suicide must have been resident in England and Wales for a specified period immediately prior to making the application. I feel sure that that is the intent of the Bill, which should make that clear, as well as the stipulation that the specified period required should be not one but two years.
Baroness Royall of Blaisdon (Lab): My Lords, I find this procedure extremely confusing. I realise that when a complex amendment is passed which subsumes other amendments it makes life complex, but for future reference, we would be very grateful as a Committee to have clear procedural guidance from the Whips as soon as possible. This has been a very confusing discussion on an extremely important issue.
The Earl of Listowel: My Lords, I will speak to Clause 1, and in particular to the concern about young people aged from 18 to 25. As I stressed before, this is a very small group within the larger group we are discussing, and one has to be very concerned that they
get the appropriate healthcare and health professional treatment so that they can make fully informed, proper decisions. It is notorious that the transition from children’s services to adult services often causes issues in the treatment of young people.
Many young people may have some difficulty in fully appreciating their own mortality. While it is easy for us to recognise, it may be more difficult for an 18 or 19 year-old to realise that ending one’s life is absolutely final. Therefore I would appreciate consideration being given to the welfare of that particular group, so that whatever progress is made on the Bill in the future, the welfare needs of 18 to 25 year-olds are taken into very careful consideration.
Lord Mackay of Clashfern: My Lords, my Amendment 10, which was superseded, accords with the amendment moved by my noble friend Lord Cavendish. I just want to explain that all I wanted to do was to put the condition about informed consent into Clause 1, which contains the lists of qualifications. There is of course a reference to informed consent later on in the Bill. That was all I wanted to do, and it goes along with what is done by Amendment 4 in the name of the noble Lord, Lord Pannick, which talks about informed wish. I therefore assume that that would be simply a technical matter of moving it.
Lord Mawhinney: My Lords, I follow my noble and learned friend Lord Mackay. I was thinking along similar lines on Amendment 10 and fully informed decisions. I am sure that all of us want decisions to be fully informed, so I wonder whether the noble and learned Lord, Lord Falconer, could before Report give some thought to whether he is satisfied that fully informed clearly includes, first, being told what the options are and, secondly, on the part of the patient, having some comprehension of what he or she is being told. Running off a list of options does not mean that the recipient is fully informed if he or she does not understand what the options really mean.
Lord Howard of Lympne: My Lords, I support the observations made by my noble friend Lord Cavendish, with respect to Amendment 70, to which he spoke but which he did not move. He spoke about the importance of palliative and hospice care, and I support what he said and endorse what he said for the reasons that he gave and those that I gave earlier today, in our first debate. I was very concerned by the tale related by the noble and right reverend Lord, Lord Harries of Pentregarth, about a remark made by a nurse in a hospice. I was distressed and surprised by that, and if he were to let me have the details I would like to look into it. It is all the more surprising because the greatest growth area in hospice care is hospice at home. Increasingly, nurses and other workers from hospices go out and look after people towards the end of their lives, in their homes. I was really distressed to hear that, but I assure your Lordships that it is very unusual and exceptional.
I should say a word in support of the observations made by the noble Baroness, Lady Howe of Idlicote. Her observations were powerful and speak for themselves,
but I confess that I had not expected the issues before the House today to become entwined in the larger immigration debate, which occupies so much space in the press at the moment—but it seems that it has done, as result of the intervention of the noble Baroness, and I strongly support what she said.
Baroness Finlay of Llandaff: I will be very brief. It is admirable how the House has coped with what appears to be slightly confusing. It is wonderful that we have clerks and Whips who understand more than the rest of us do, as it unfolds.
This stand part debate is very important, partly because the two issues of transitional care and the needs of very young adults are critically important, as is the point made about suicide tourism. I am sure that that was never intended by the noble and learned Lord, Lord Falconer, but this was the only place that it could come up in the Bill, and I am glad that my noble friend Lady Howe raised it.
I had sought previously to clarify “assisted dying”, and that the first clause should be titled “Assistance with suicide”, because this is about assisted suicide—it is not about physician-administered euthanasia. All the debates that we have had are as such, and I hope that when the Bill is reprinted we will be able to have a more accurate title to Clause 1. It is assistance with suicide, not physician-assisted euthanasia.
Baroness Grey-Thompson: My Lords, I apologise, but I would like to speak briefly because I had six amendments that dropped out due to the amendment of the noble Lord, Lord Pannick.
Lord Taylor of Holbeach: If I can just explain—those amendments that are part of the groups that the pre-empted amendments belong to will occur later on, when we come to them in order.
Baroness Grey-Thompson: I apologise; I did not express myself very well. I thank the noble Lord for that clarification. I agree with the points made by the noble Lord, Lord Howarth of Newport, on coercion. I absolutely endorse what my noble friends Lord Alton and Lady Finlay of Llandaff said about terminology. Terminology is the dress of thought and is incredibly important.
We still have to debate issues such as how, what, when, where and who, which come up in Clause 1. I refer to an issue which I cannot see coming up anywhere else—that is, how somebody who is peg fed may be assisted to die, and where that fits in with what help is actually needed. In the USA, a patient had a peg fitted expressly so that he could be helped with assisted suicide. My noble friend Lady Campbell of Surbiton already has a peg fitted and that is how she is fed and survives. A lot of questions still need to be answered about the administration of drugs. I think it is assumed that a patient may be swallowing some medicine or some liquid, but for some people the situation might be very different.
Lord Faulks: My Lords, this last group has engendered a wide-ranging debate which has called for considerable mental agility on the part of the participants. They have shown themselves well able to do so. I could not attempt to summarise all the issues that have been raised, but well raised they have been, and they have given the noble and learned Lord, Lord Falconer, a great deal to consider.
I shall deal with one point only. The noble Earl, Lord Listowel, was concerned, as he always is—much to the benefit of the House—with those aged between 18 and 25, who have not been the main focus of our attention today. I can tell the Committee that the General Medical Council’s core guidance for all registered doctors on good medical practice makes clear that a doctor,
“should make sure that arrangements are made, wherever possible, to meet patients’ language and communication needs”.
This will include consideration of the age of the patient.
Lord Falconer of Thoroton: The last half hour has been a remarkably focused debate on a series of amendments. I wish to go through each of the points that have been made.
Amendment 11 in the name of the noble Lord, Lord Alton of Liverpool, seeks to insert at the end of Clause 1 that a condition of having a right to an assisted death is that someone,
“is able to administer to himself or herself a lethal dose of drugs through whatever route is normally employed for ingestion of food”.
As the noble Lord recognised, that is at odds with the terms of the Bill, which state that,
“an assisting health professional may … prepare … medicine for self-administration by that person … prepare a medical device which will enable that person to self-administer the medicine; and … assist that person to ingest or otherwise self-administer the medicine; but the decision to self-administer the medicine and the final act of doing so must be taken by the person for whom the medicine has been prescribed”.
The Bill then specifically says with reference to subsection (4) of Clause 4, which I have just read out:
“Subsection (4) does not authorise an assisting health professional to administer a medicine to another person with the intention of causing that person’s death”,
so it absolutely underlines that it has to be a final act by the patient himself.
I am against the amendment of the noble Lord, Lord Alton, as it would discriminate against weak patients who cannot easily manage medication orally, including weakened cancer patients as well as those suffering from motor neurone disease, where setting up a form of driver would be more appropriate, but leaving the patient to take the final action. Alternatively, a nasogastric tube or even an intravenous drip can be set up and still leave the patient in control of the final action. The key thing here is to make sure that the Bill underlines that it has to be the final act by the patient but gives some degree of flexibility.
Amendment 10, which was primarily referred to by the noble Lord, Lord Cavendish of Furness, and is in his name, seeks to add a condition that the request for an assisted death should be made,
“on the basis of a fully informed decision”.
The Bill currently says that the person has to make the decision,
“on an informed basis and without coercion or duress”.
“In deciding whether to countersign a declaration under subsection (3), the attending doctor and the independent doctor must be satisfied that the person making it has been fully informed of the palliative, hospice and other care which is available to that person”.
As a result of the amendments made by the Committee, moved by the noble Lord, Lord Pannick, the Bill now states that the judge has to be satisfied that the person has,
“a voluntary, clear, settled and informed wish”.
As between the Bill and the noble Lord, Lord Cavendish, there is no dispute that the person should be informed. I would be happy to insert “fully” wherever “informed” is referred to.
The noble Lord, Lord Cavendish, also has a further amendment, Amendment 70, supported by the noble and learned Lord, Lord Mackay of Clashfern, and the noble Baroness, Lady Grey-Thompson, in which, in effect, they set out what one would expect to form part of the full information given before the decision is made. It includes what the consequences of the illness are, what palliative care and pain relief are available, and what the prognosis is in relation to the illness—considerable detail like that. I would expect all these matters to fall within the words “fully informed”, but I recognise the feelings of the noble Lords, Lord Cavendish, Lord Howard of Lympne, and the noble and learned Lord, Lord Mackay, all of which suggest support for further spelling out of the meaning of “fully informed”. Can I take that away and come back with a proposal on Report to spell that out? I should make it clear that the sorts of things referred to in Amendment 70 would have been what I would have expected to include in any event. However, I can see that the Committee would get more assurance if it were set out in the Bill.
The next group of amendments were from the noble and right reverend Lord, Lord Harries, who was keen in Clause 1 to insert a provision that the decision was being made voluntarily. I am sorry to be wearisome, but the Bill currently requires that the two doctors must be satisfied that the person,
“has a clear and settled intention to end their own life which has been reached voluntarily, on an informed basis and without coercion or duress”.
In addition, as a result of the amendments made this morning, the judge has to be satisfied that the individual,
“has a voluntary, clear, settled and informed wish to end his or her own life”.
There is therefore no doubt that the requirement for voluntariness is there at two stages already. With all respect to the noble and right reverend Lord, Lord Harries, legally it will not make much difference to add that provision elsewhere also.
However, the noble and right reverend Lord touched on the deeper issue of whether we as a House would consider a situation whereby, even though one wished to live, one decided, because one was a burden to those one loved, to go down the route of an assisted death. I would say that that was not voluntary because one wanted to live. That may be an oversimplification in
many cases—there may be other cases where the situation is more complicated—but I would not be in favour of putting anything to that effect in the Bill.
Lord Harries of Pentregarth: The noble and learned Lord seems to agree with my point and speaks as though it would automatically be taken into account. Would it not be safer to have it spelled out in the Bill—that one of the marks that the decision was voluntary is that those looking into the person’s decision were assured that that person was not acting out of a sense of duress because they felt a burden?
Lord Falconer of Thoroton: My reason for not putting that in the Bill is that so many cases are much more complex than the simple case I gave, where I would not wish for there to be an assisted death—where one’s motive for wishing to have an assisted death will be a mixture of “I don’t want to be dependent on other people, I don’t want the lack of dignity, I don’t want to be a burden”, a whole mixture of motives that make clear “I do not want to go on living for the last week or month”. I am very unkeen to isolate just one factor in what is a much more complex issue than the example I gave. That is why I am against putting that in the Bill.
Lord Howarth of Newport: Will my noble and learned friend say a word or two about how he envisages that the judge or the doctors should know, ascertain and satisfy themselves that the decision has been taken voluntarily?
Lord Falconer of Thoroton: They must conduct in-depth discussions with the patient and the other doctors. The judge must call such evidence as he or she considers appropriate to be satisfied—the burden is to be “satisfied”—that the decision is voluntary. “Voluntary” means “this is what the patient wants”: he or she is not
being forced into it either by coercion or by the sort of guilt that we referred to earlier. Although that will give rise to complex issues, it is not a job that is beyond judges or, indeed, some doctors.
The noble Baroness, Lady Howe of Idlicote, said that a person should have to be resident for a year immediately before the declaration is agreed. I think that is the Bill’s effect, because as it is drafted it says,
“on the day the declaration is made … has been ordinarily resident in England and Wales for not less than one year”.
The patient has to have been here for a year. However, she has a second point, which is that it should be two years rather than one. Until the noble Lord, Lord Howard, suggested it, it had not occurred to me that this was about immigration. I had thought it was about a desire to prevent tourism for this purpose, which is how the noble Baroness put it. I think it is quite difficult to judge between one year and two years. My inclination is to stick with one year, but I will take soundings to see whether two years seems right. People coming to be resident for a year before the declaration is made looks like considerable forward planning. I am not minded to accept her amendment.
The noble Earl, Lord Listowel, made a point about the 18 to 25 year-old age group. I completely agree with him that they need especial care, but this right is for anybody aged over 18. I do not think it should be taken away from them. We need to consider what should go into a code of practice to ensure that the particular needs of 18 to 25 year-olds are borne in mind.
I think that has dealt with all of the amendments that were suggested.