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Lord Puttnam: My Lords, a couple of weeks ago a close friend of mine, a former Member of your Lordships' House, died surrounded by his large family in precisely the way that every one of us, given the choice, would wish to breathe our last. Sadly, that is far from being the common experience.
I think that this is the first time that I have tested the patience of the House on a subject on which I can offer no professional background whatsoever. We have been fortunate to hear from a great number of experts, those whose background as doctors and care workers have made them remarkably well versed in this most difficult of areas. The voice that I have found missing has been that of the patient; the desperately, terminally sick human being whose principal concern is to minimise their suffering and end their lives with some semblance of dignity. That voice does exist, but for the most part it has been left to the artist to convey it. My purpose here today is to ensure that this most important voice at least gets a hearing.
Like many of your Lordships, I have a personal story to tell. The death of my mother last December, aged 93, was a travesty of natural justice. I cannot fault the excellent care she received, but the final three months of what had been an active and healthy life were simply grotesque. As she slipped away, week by week, the person that my sister and I visited rapidly ceased to have any resemblance to our mother. This once energetic woman was reduced to little more than a confused, skeletal "living cadaver".
Did your Lordships know that those approaching death very commonly experience acute nightmares? No, neither did I. The closest my mother and I came to a "conversation" in those final few weeks was her all-too-vivid descriptions of being abducted—"kidnapped", as she believed—by those who appeared only to wish her harm. Every scrap of dignity was stripped away as she was simply—kept alive.
I would not wish any Member of your Lordships' House to suffer as my mother did in her final weeks. The belief that under our present arrangements pain and suffering can be kept at bay is, in too many cases, simply not true. It is not, as the noble Lord, Lord Carlile of Berriew, would encourage us to believe, a one in a million chance. Far from it.
A number of contemporary artists have taken a stab at depicting the personal experiences of people like my mother and, given my background, it would be odd were I not to draw your Lordships' attention to the cinema. It may be worth pointing out that artists, down the years, have tended to anticipate the future rather better than lawyers, doctors or even bishops. Like Alan Bennett, they are a voice well worth listening to.
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Three films at least should be compulsory viewing for anyone wishing to share what I would best describe as an experiential viewpoint. "The Sea Inside" has rightly been highly praised, but I suggest that your Lordships might find even more illuminating the French-Canadian film, "The Barbarian Invasions", along with the magnificent Japanese production, "The Ballad of Nayarama". All of these films, in their different ways, take you on a difficult but thoroughly educative journey.
I have touched on my own experience but I should like to offer another testimony from, as it were, the "front line". Alan Rusbridger, the distinguished editor of the Guardian, wrote earlier this year about the death of his father. Here is a short extract from what I found to be a very moving account:
"My father was, so far as we could tell, quite often in agony. And my brother and I were placed in the awkward situation of begging, cajoling and—in the end—demanding that he be given ever higher doses of morphine.
Different members of the medical team appeared to have different views about what was an adequate, or even an appropriate dose. The 'night' team countermanded the 'day' team. The palliative care team didn't work at weekends!
I had a tense conversation with one Macmillan nurse to whom I had suggested raising the dose. 'I'm afraid we have ethical and legal difficulties with sedation' she said.
'I'm not asking you to sedate him', I replied. 'I'm asking you to do what he was promised—to be allowed to die without pain'.
My brother and I visited every day, spending hours by his bedside, But, as luck would have it, de-hydration finally took its course at a time when neither of us was there. So my dad died alone.
Why is withholding nourishment and treatment, as an old man withers away from de-hydration, more ethical then intervening to help him die at the time, and in the manner, of his choosing?"
Are we honestly to accept that this is simply "God's will"? Was it God's will that some 20,000 people died in Kashmir at the weekend? Not my God. My God will be weeping. Is it entirely beyond us to navigate our way towards something altogether better— not "either/or" but "and"—a choice that might perhaps, at the end of our lives, dignify the human experience?
The Earl of Northumberland is reported as saying:
That was almost 1,000 years ago. He was right then and he would be equally right today. Surely the time has come finally, seriously and humanely to address the manner of our parting. I unreservedly support the need for this Bill or something remarkably like it.
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Baroness Howe of Idlicote: My Lords, I join other noble Lords in congratulating the noble and learned Lord, Lord Mackay, and his committee on such a knowledgeable and balanced guide to this very difficult subject. No one who heard the dramatic and sad account of the noble Lord, Lord Puttnam, could be other than sympathetic and very concerned about the conditions in which those whom he described died. However, if the Bill introduced by the noble Lord, Lord Joffe and not the Select Committee report were before us today I should be unlikely to support it.
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Apart from the concerns of the healthcare professions, to which I shall return, my reasons for caution fall mainly into the "slippery slope" category, which I think both exists and is very relevant. There is also the risk of masking the need for a huge improvement in the availability and quality of palliative care for those with terminal illness.
On the slippery slope concept, I am concerned that such a Bill could all too easily increase the risk of legalising assisted dying and euthanasia well beyond the three currently named qualifying groups. The report rightly draws attention to the need for those categories to be much more clearly defined, but would that be enough?
There are, I fear, also some economic factors at work. We are an ageing population, and that means higher costs as well as benefits. Most citizens have little need of healthcare so long as they are young and healthy, but when and if they reach the point of being unable to care for themselves they deserve proper and, above all, pain-free—I insist on that—and, inevitably, increasingly expensive healthcare. Yet we know that they do not always get it. Indeed, far too often they do not get it.
Inevitable pressures exist—have always existed—on NHS budgets. Concern about delays in securing rapid enough approval for the latest cancer drug, about which we have heard over the past month or so, is just one example. The postcode lottery aspect of whether the health services needed are available in your area is another. So I share the concern, for all those reasons, that the basic human rights of the elderly and other vulnerable groups could all too easily slip still further down the priority list.
I turn now to the concerns of the caring professions. There is, rightly, much discussion of the role and responsibilities of doctors. That is entirely reasonable, for they are the people who would be prescribing lethal drugs or administering lethal injections. As the Select Committee made clear, hospital doctors would bear the main burden of euthanasia requests. Even so, I was disappointed to see how little emphasis there was in the report on the position of nurses.
Many years ago, I served on the commission, under the distinguished chairmanship of the noble Lord, Lord Briggs, on the future of the nursing profession. Its membership included every kind of medical, nursing and manpower expert. Being none of those, I gave myself the title of "Patients' rep", and from the patients' viewpoint, and in so many other ways, I came away with a profound admiration and respect for the nursing profession.
In the context of this report, nurses, in some respects, occupy an even more central position than doctors. They are generally the member of the healthcare team to whom patients feel most able to speak freely; they are usually with the patient all the time. The doctor, by definition, is generally a visitor and, albeit under the doctor's supervision, the continuing burden of patient care falls inevitably on
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the nurse. Of course, it is exactly the close relationship which develops between patient and nurse that is so critical in today's debate.
"there is a real danger that the proposals in the Bill could undermine the nurse-patient relationship, leading to a culture of fear amongst vulnerable people at a time when they most need to feel supported by their clinical team".
Many of your Lordships have raised that point. Yet, despite that, nurses seldom appear in the noble Lord's Bill either. Almost the only reference to the nursing profession is the general phrase "member of a medical care team". That is a serious deficiency.
Finally, let me say a word about palliative care—others have touched on it as well. The Bill would enable an applicant for euthanasia to ask for a palliative care consultation, but, as the committee wisely observed, experiencing good pain control is different from being told about it. To have reached the despair of requesting euthanasia, a patient is likely to have received inadequate care and to be completely worn down, unable to conceive of anything that would really improve quality of life. It is therefore insufficient for any Bill that purports to see palliative care as complementary to euthanasia simply to offer the option of a consultation. We should not agree to end the life of patients who have not experienced good palliative care.
All that begs the question: why have those dying people not received good care? After all, the report tells us that Britain has the best palliative care in the world, so why are people still dying in despair? The answer, I fear, is simple. As with so much else in the NHS, Britain leads on quality but is deficient on quantity and, sadly, distribution. Up to now, the gap has been filled, to a large extent but by no means sufficiently, by the voluntary sector's herculean efforts. Where there are specialist palliative care centres, as has been so brilliantly argued by my noble friend Lady Finlay, and doctors and nurses who have had specialist training, the ability to alleviate the suffering of terminal illness is little short of dramatic. The problem is that such centres of excellence are too few and far between, with the result that many people who are dying do not receive the end-of-life care that they deserve. Yet, we are debating assisting patients to commit suicide or giving them euthanasia, when, with some reallocation of NHS resources, we could solve the problem without changing the law and putting people at risk. Would it not be much wiser to concentrate on that vitally important second alternative?
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