Assisted Dying Bill [HL]

Baroness Grey-Thompson Excerpts

Friday 7th November 2014 Lords Chamber

[Baroness Grey-Thompson (CB)]

My Lords, I will briefly pick up on a few points that my noble friend Lady Finlay of Llandaff raised, and on the point made by the noble Lord, Lord Deben, on stereotyping. Quite rightly, we are spending a lot of time thinking about the process of the Bill. It is absolutely important that we get this right. However, we also have to think about what someone’s end of life may be.

I have never met anyone who wants to talk about their own death or think about the process of dying. The purpose of the noble and learned Lord’s Bill is for people to die without pain. However, we also have to remember that death, in some cases, is not a stereotype. It is not always a Hollywood death, whereby people just slip away. We have to be very careful of that.

A German documentary was shown in August 2004 about the scandal of Auhagen’s death, in which the man in question wanted to use a machine to end his life, not wanting any assistance from another person. He was hooked up to the machine, and 24 hours later, he had not died. The nurse who was with him said:

“The machine … couldn’t pump all the poison into his system. The man was partially poisoned, in agony and thrashing around in a coma, frothing at the mouth and sweating”.

That cannot be allowed.

In Oregon, some of the data have shown that in the last few days of life patients who have requested assisted suicide go through more pain than they did before the legislation was introduced because the palliative care is not there. If the Bill progresses, we cannot allow it to happen that, if someone wants to end their life, goes down the path of requesting suicide and then goes through the cooling-off period, the proper and appropriate palliative care is not there to support them all the way through.

[Lord Davies of Stamford]

My Lords, I will make three points, which are important at this stage of the debate.

First, I very much deprecate the frivolity with which the noble Lord, Lord Carlile, answered my question about the time involved in producing an independent expert’s report. It is quite wrong to be frivolous about such a very important subject. Clearly, there has been a tendency to put forward a number of amendments in this group, all of which would increase both the time and the cost required to enable someone to benefit from the new regime brought in under the Bill. It is quite wrong of us in this Committee to underestimate the fact that if we passed these amendments we would add a considerable degree of cost and time. There would be the need to go to a coroner, the need for an independent medical expert, and for another independent expert who would be supposed to collect the drugs and oversee the process, and so forth. All that would mean more people, that arrangements would have to be made—in practice they cannot be made in a second or two—and that reports would have to be produced. We all know that people take some time to produce written reports, and on a matter of this kind one would take particular care to get every word in the report right. Therefore, I was not wrong to raise the issue of time and cost.

On costs, we heard with great relief some of the remarks made by the noble Lord, Lord Faulks, about the possibility of using legal aid, but we know that, however generous the Government will be, not all the costs involved in this process will be defrayed from public funds. Therefore we do not want to produce a certain situation but, as a matter of fact, we already have a situation whereby if you have enough money you can go to Zurich and solve the problem that way. There is a significant gulf at present between those who have greater financial means and those who do not as regards the choice they have as they reach the end of their lives and how they want to go. We do not want to exacerbate that, and by increasing the cost we are doing so. We simply have to take that into account and it should not be frivolously dismissed, as it was this morning.

Secondly, I want to pick up the point made by the noble Baroness, Lady Grey-Thompson, a moment ago. I see no reason why palliative care should not be continued until the moment when the patient decides to exercise his or her option to terminate his or her life under the procedures laid out in the Bill, if it becomes law. I see no reason why there should be any need to withdraw palliative care some days or weeks beforehand. That seems to me a problem that should not arise at all.

Finally, I want to address the point made by the noble and gallant Lord, Lord Stirrup, whose main objection to the Bill seemed to be that the medical profession should not be involved in decisions about the deaths of patients. That is a very serious point; I made a point along those lines at Second Reading. At present, what most of us face if we have a slow death is palliative care, which generally ends up with palliative sedation. That means that the patient is put into a medically induced coma and all means of life support, including food and liquids—not invariably so but certainly in many cases liquids as well, so that the patient is dehydrated—are withdrawn, along with any life support in the form of oxygen and antibiotics. If the patient has had kidney failure and been on dialysis, that is withdrawn, so the patient dies from blood poisoning. The patient dies in a coma, which takes a great deal more than the 25 minutes that is the average in Oregon, when people use that regime for the right to die. It takes many days, in many cases; I have known at least one case when dehydration took two weeks to kill the patient, who of course did not awaken from the coma during the whole of that period. That is the reality: every day of the week and every hour of the day, doctors and nurses take decisions determining the timing and cause of their patients’ death. They are taking the decision to withdraw antibiotics and life support, putting the patient into a palliative coma.

It is the alternative to that regime that my noble and learned friend Lord Falconer is proposing this afternoon, so that people have a choice. The whole object of the Bill is to give the patient a vote. At present, in many cases, the patient does not even know about the decision being taken by doctors and nurses, which will determine the precise means and timing of their demise. Under the Bill, undoubtedly the patient would be in the front line and the driving seat, taking the key decision, and the doctors and nurses would respond to a decision made explicitly by the patient. That seems to me an enormous improvement. I hope that even those of us who do not want this particular regime and would not want to use it ourselves will not want to deny others the opportunity to have a choice between death in a palliative coma and death as it could be chosen under this Bill.

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[Baroness Masham of Ilton]

My Lords, I support Amendment 71 in the name of my noble friend Lady Hollins. As in the case of those with terminal illness, we know that identifying depression is particularly challenging in some other groups, such as those with physical disabilities, intellectual disabilities or autism spectrum disorders.

Depression is more common in those with physical disabilities arising, for example, following a stroke, spinal cord injury or as a consequence of multiple sclerosis. Research shows that that is particularly so when factors including chronic pain, reduced mobility and poor social support are present. Identifying and treating depression and attending to contributory factors can improve both mental and physical health, but depression is difficult to detect in those with physical disabilities. That is because symptoms of the underlying disability can overlap with symptoms of depression—for example, fatigue, lack of interest in previously enjoyed activities, difficulties in sleeping and emotional lability. Depression can be missed by doctors who are not experienced in assessing mental disorders in the context of physical disabilities. Specialist assessment is often required.

Similarly, people with autism spectrum disorders may have characteristics such as social withdrawal, impaired communication and sleep and appetite disturbance which can mask symptoms of depression. Depression often manifests differently in those with intellectual disabilities compared to the general population.

Furthermore, detecting mental disorders in people with autism or intellectual disabilities, as well as assessing their mental capacity to make specific decisions, requires an understanding of their communication needs and how they may differ from the general population. For example, some people with intellectual disabilities may find it easier to communicate using pictures rather than words; others may demonstrate acquiescence, or a tendency to repeat the last words spoken to them. A doctor who has not had experience of or training in assessing mental disorders and mental capacity in people with autism or intellectual disability may be unable to identify the presence of disorders such as depression and may struggle to optimise the person’s decision-making capacity. Again, specialist assessment is vital.

Those vulnerable patient groups are not adequately protected by the Bill as it stands. That is even more reason to introduce a process to make specialist assessment of mental disorder and end-of-life decision-making capacity mandatory. Disability is very complicated, and everyone is an individual.

[Baroness Grey-Thompson]

My Lords, I speak in favour of the amendment tabled by my noble friend Lady Hollins. I felt, coming into the Bill, that I needed a much deeper understanding of mental capacity because my only personal experience of dealing with psychiatrists and psychologists goes back to when I was 11 years old. I have to thank my noble friend Lady Warnock for that because of her incredible work on special educational needs. At the time, I was not allowed to go to a mainstream school and my only gateway into it was going through mental capacity tests.

I have read so much on this but one article that I found stood out to me. It was written, I accept from a very particular point of view, with reference to Herbert Hendin MD, who is CEO and medical director of Suicide Prevention Initiatives. He is also professor of psychiatry at New York Medical College. He stated in congressional testimony in 1996 that,

“a request for assisted suicide is … usually made with as much ambivalence as are most suicide attempts. If the doctor does not recognise that ambivalence as well as the anxiety and depression that underlie the patient’s request for death, the patient may become trapped by that request and die in a state of unrecognized terror”.

The article also said:

“Most cases of depression … can be successfully treated …Yet primary care physicians are … not experts in diagnosing depression. Where assisted suicide is legalized, the depression remains undiagnosed, and the only treatment consists of a lethal prescription”.

We have heard a lot about the difficulties of diagnosis. My noble friend Lady Hollins mentioned the 6% of doctors who are confident that they can diagnose depression. If we look at the figures from Oregon, which the Bill is based on, back in 1998 31% of patients underwent psychiatric evaluation. In 2003-04 it was 5%, and in 2007 no patients underwent psychiatric evaluation. There is the case of Michael Freeland, who for 43 years had diagnosed mental health issues and suicidal tendencies—this was all recorded. He was able to obtain the drugs.

Several studies have shown that incidences of psychiatric illness, particularly depression, are linked to 30% of people with a terminal illness. We have to make sure that these safeguards are included. In my mind, we must make sure that anyone who wants to go down this route has to be evaluated in a clear manner by people who understand mental capacity.

[Viscount Colville of Culross (CB)]

My Lords, I have put my name to Amendment 66 because, as I said at Second Reading, I am concerned that there are not sufficient safeguards in the Bill to ensure that the mental capacity of the terminally ill person has been correctly assessed.

In subsection (2) of the proposed new clause, the emphasis is on the doctor not to countersign the declaration of intention,

“Unless the attending doctor is satisfied that a person requesting assistance to end his or her own life has the capacity to make”,

that decision. I listened carefully to what my noble friend Lady Hollins said about psychiatrists not necessarily being brought in. However, I should like to think that we can rely on the professionalism and training of our doctors and that if they were in any doubt at all, they would call in a psychiatrist to make this assessment to reach that very high level of satisfaction that the patient has the mental capacity.

The requirement to call in a psychiatrist if the doctor is concerned about the person’s mental capacity was included in the original Bill of the noble Lord, Lord Joffe, but is not in this Bill. As my noble and learned friend Lady Butler-Sloss said, subsection (2) of the proposed new clause points out that the person should not be,

“suffering from any condition, including … depression”,

which could impair his or her judgment. Recent medical evidence has revealed that the presence of depression in terminally ill patients is much higher than in other patients. In a report in the BMJ, Prevalence of Depression and Anxiety in Patients Requesting Physicians’ Aid in Dying, the authors investigated terminally ill patients in Oregon who requested aid in dying and found that more than 50% met the criteria for depression or the criteria for anxiety that they were depressed. Depression can leave a person with unchanged mental capacity; it can also radically change a person’s mental capacity. There was rather a good article in the Journal of Clinical Oncology entitled “Euthanasia and Depression: A Prospective Cohort Study Among Terminally Ill Cancer Patients”, which discovered that the risk of requesting euthanasia for patients with a depressed mood was 4.1 times higher than that for patients without a depressed mood.

This amendment would put the onus on the doctor assessing the mental capacity of a patient to bring in a psychiatrist if they were at all concerned about this condition. Proposed subsection (3) seeks to set out the criteria for the psychiatrist who is going to be involved. The 2005 mental capacity committee heard from Dr Geoffrey Lloyd of the Royal Free Hospital’s department of psychiatry that in more complicated cases only liaison psychiatrists have the expertise to assess a patient’s mental capacity correctly. The report said:

“There was a general consensus among our expert witnesses on one point—that the attending and consulting physicians who are envisaged as being effectively the ‘gatekeepers’ in regard to applications for assisted dying could not be expected to spot impairment of judgement in all cases”.

Proposed new subsection (4) asks for the psychiatrist also to be satisfied that the person making the request has the capacity to make the decision to ask for assistance with dying. Patients can be very good at deceiving even trained psychiatrists about their state of mind and can appear to be capable when they are not. The same often appears with people who are suffering from dementia. Psychiatrists may need to make another visit, maybe a month or so later, to make a proper assessment of their capacity. I can quite see that this sort of period can make the delay too long for many terminally ill patients. My answer must be that the most important thing is to get the decision right. I hope that this amendment will do just that.

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[Lord Falconer of Thoroton]

My Lords, perhaps I might I try to short-circuit this. I am broadly in favour of having something in the Bill that says, “You should not be making suggestions”. My anxiety is that I do not want to end up in a situation where there is a fine debate in court as to who first suggested it. It may be that somebody would say, “Can anything be done? Can this be brought to an end?”, and the doctors would say, “There are these options”. Would that be in breach? I do not know and I need to think carefully about the drafting in relation to this to avoid that sort of fine, purposeless discussion in court.

[Baroness Grey-Thompson]

My Lords, a doctor very explicitly suggesting to somebody that they end their life is one thing. But for me a much greater concern, which has been debated quite a lot already, is about the gentle suggestion that people should consider ending their lives—the arm around the shoulder. I am sitting in your Lordships’ Chamber only because many hundreds of thousands of pounds of NHS money have been spent on putting me back together. I have had some amazing doctors with a dreadful bedside manner, and I have had some doctors with a great bedside manner who have performed procedures that I did not ask for. It was recently reported that a young man, Mik Scarlet, turned down a certain procedure several times. When he was on the operating table, the surgeon completely ignored his wishes and carried out the procedure anyway, and it had to be reversed. He is in a better position now than he was previously. It is a very long and complicated story, which is detailed on the Huffington Post.

For me, this is about the constant drip-drip of “You’re not worth it”. I am a very resilient person. If I got upset every time somebody said to me, “I wouldn’t want to be like you”, I would be depressed. Somebody said to me recently, “Well, I wouldn’t want to be incontinent. That’s my worst thing in life”. I am technically incontinent. If it was not for self-catheterisation, I would probably be dead, because I would have pressure sores; I would not exist. I was having a debate in Central Lobby with somebody who strongly supported my view on where we should go with the Bill. He looked at me and sort of waved at the wheelchair and said, “Well, you must have considered killing yourself hundreds of times”. No, I have not, actually, and I think that it was a bit of a surprise to him. It is that sort of tone, where “You’re brave. You’re marvellous”. People do not realise that they are being demeaning. I think that they genuinely think that they are being empathetic, sympathetic and kind, but, actually, you are constantly being knocked down and told that you have no value and no worth. That is what is of much greater concern to me.

The noble Lord, Lord McColl, mentioned Oregon. In 1994, the Oregon medical assistance programme cut funding to 167 out of 700 health services. Four years later, assisted suicide started being referred to as a “treatment”. On the back of that, funding was cut to 150 services for disabled people. They started limiting funded doses of powerful pain medication and put barriers in the way of funding for antidepressants. Thank goodness we do not have an insurance system like the one they have in the United States. I would be dead because my parents could not afford to keep me alive. For me, the big issue is not the doctor saying that your life is not worth living; it is the arm around the shoulder. It is that constantly being told, “You’d be better off dead”. That is what disabled people face every single day. Disability hate crime figures are the worst they have ever been in 10 years of reporting. It is constant. There is not a group of disabled people and a group of terminally ill people; there is a huge crossover.

I am sure that many people have noticed that my noble friend Lady Campbell of Surbiton is not here today. She has a chest infection. She is watching at home on her ventilator. We all know what a chest infection does for her prognosis. It immediately switches her from being okay to fitting in with the category of having less than six months to live. That is not a situation that I am very comfortable with.

[The Earl of Listowel (CB)]

My Lords, the noble Baroness spoke about the young man who was operated on misguidedly by the surgeon. It reminds me that young people, 18 to 25 year-olds, might be particularly susceptible to this kind of suggestion over time. I am concerned that this particular group, who are not at the end of their lives but at the beginning and who represent a very small group within the group that we are discussing today, should be given plenty of thought, in particular because of issues around their maturity and the trauma that they may have experienced growing up.

We recognise that developmental delay can arise from trauma. We recognise that, while 18 is generally considered the age of maturity, we extend protections up to the age of 25 for young people who are leaving care. That is for a number of reasons, but in part because of the history of trauma that they have experienced. We recognise that it may take more time for them to develop. Where children or young people have not built up such large social networks, they are more dependent on those nearest to them and one should be very careful to avoid a situation in which they are drip-fed the notion that perhaps their life is not worth living and should be curtailed.

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[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.

[Noble Lords]

No.

[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.