Lord Dubs
Main Page: Lord Dubs (Labour - Life peer)Health: End of Life
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Lord Dubs (Lab)
My Lords, my aim in this debate is to consider, in its widest sense, end-of-life care, to note what progress has been made in recent years and to look into the future. I accept that while some of the issues will command broad support in this House and in the country, others are controversial. But there is one thread running through all this: how we can best achieve informed patient choice. We are better able to discuss death today than ever in the past and it is becoming less of a taboo subject. This is in large part down to the work of the hospice movement, other stakeholders such as the Dying Matters coalition, successive Governments who have implemented the end-of-life care strategy, and the ongoing public and parliamentary debate on assisted dying led by Dignity in Dying, to which I owe my thanks for some of the help that it has given me in this debate, and indeed in the past.
I would like to say a little about what has influenced my own views. I remember, as vividly as if it were yesterday, the debate on my noble friend Lord Joffe’s Bill in this House some years ago. I listened hard to that debate; at the beginning of it, I was not even certain where I stood, but by the time I had heard the arguments I realised that I could not vote to deny other people something that I would want for myself. So of course I supported the Bill, and have been a supporter of that cause ever since.
It was at about that time that a friend of mine with motor neurone disease was dying. I went to see him, his wife and children around him, and he tapped out a message to me on a keyboard, the only way in which he could communicate because he was no longer able to speak. His message was that I should support the change in the law to permit assisted dying—a very passionate plea from a person who could not actually speak with passion. That was almost the last time I saw him because he died at home shortly afterwards. It moved me enormously in my attitude to this whole issue.
It is worth noting that palliative care, an area of healthcare that focuses on alleviating the suffering of patients, is, by comparison with other established forms of healthcare, a fairly modern development. I believe that palliative care merged with the hospice movement in the late 1960s, and since then it has made great progress to ensure that patients at the end of life can die comfortably and peacefully. Of course there is still some way to go in making this a reality for all people at the end of life, but I believe that this House will be united in its admiration for how far we have come in such a short space of time and would like to join with me in expressing my admiration for the healthcare professionals, in both the NHS and the wider hospice movement, who have dedicated their lives to alleviating the suffering of their patients.
However, we know that the journey to date has not been without difficulties and areas of controversy. The House will be aware of the recent concerns raised in the media about the Liverpool care pathway for the dying. These concerns resulted in an independent review by the noble Baroness, Lady Neuberger, in July, which recommended the phasing out of the pathway, a recommendation that the Government accepted. There are other documented cases where standards of care at the end of life have fallen well short of what we expect, some of them highlighted by the Patients Association. I understand that in the near future the Government will make proposals to replace the Liverpool care pathway, and I wonder if the Minister can give us some idea of when this might be expected.
This debate comes at a critical time for the development argument of end-of-life care. The Government have asked NHS England to lead an alliance of stakeholders in creating and delivering,
“the knowledge base, the education, training and skills and the long-term commitment needed to make high quality care for dying patients a reality, not just an ambition”.
Separate to the review, and as a matter of profound conscience, my noble and learned friend Lord Falconer has tabled an Assisted Dying Bill that awaits its Second Reading in, I believe, the next Session of Parliament. I hope that with the combination of the NHS England review and my noble and learned friend’s Bill we will be able to develop a broader approach to end-of-life decision-making in the next two years, an approach that puts patients first.
I turn to what I understand by patient choice. Some people are uncomfortable about that concept. There is a concern that the patient may not make a free choice but may somehow feel under pressure from those close to him or her, possibly not always from worthy motives—I have had that point put to me. However, it is only right to point out that there are no safeguards at all in going to Switzerland to have an assisted death provided that one can afford the air fare, so my noble and learned friend’s Bill would actually improve the situation significantly by having safeguards in the process. The issue is whether there can be satisfactory safeguards for an ill patient who may also be in considerable pain. I believe firmly that this can be done otherwise I would not support changes in the law, because I believe that these safeguards are essential.
I should add that there are those who oppose people’s choices at the end of life because they are based on sincerely held—although, I believe, faulty—religious beliefs. To me, though, and I suspect to most people, the desire not to suffer or to see others suffer against their wishes is a worthy sentiment, and I see greater patient choice as ensuring that people do not suffer against their wishes at the end of life.
Of course, suffering is subjective. To some, the inability to spend their final days in familiar surroundings may cause distress; to others it may not. Some may have a higher threshold of pain than others or a stronger desire to live. Within reason, though, and with sufficient resources, informed choice can surely accommodate individual wishes and preferences that would enable the patient to have what they themselves consider to be a good death.
The End of Life Care Strategy published by the previous Government in 2008, and taken forward by the present Government, has led to increased investment in end-of-life care and more people dying at home. The strategy recognises the importance of treating people,
“as an individual, with dignity and respect; being without pain and other symptoms; being in familiar surroundings and being in the company of close family and/or friends”.
The right,
“to be involved in discussions and decisions about your health and care, including your end of life care, and to be given information to enable you to do this”,
is now also reflected in the NHS constitution.
Furthermore, I understand that the Government are giving active consideration to the merits of the Macmillan campaign, championed by my noble friend Lord Warner in this House, to provide free social care at the end of life so that people can stay in their own home with adequate support.
I do not believe that choice is simply matter of saying, “I want to be at home”. Choice is wider than that, but I do not want to diminish the importance, for those who want to do it, of dying at home. I believe that there are other people who would also like greater choice over their care and treatment at the end of life regardless of where that care is delivered. We need a broader approach to patient-centred care at the end of life. On this I wish to commend the work of Sue Ryder and its excellent report A Time and a Place: What People Want at the End of Life. It states:
“End of life care policy and practice has, for some years, focused on ensuring people die in their preferred place of death and usually at home. But this focus on where people die—rather than what they want at the end of life—has inhibited personalisation and informed choice for patients and their families. It has led to a lack of proper scrutiny of the experience of dying at home and left other settings neglected when it comes to developing them as good places to die”.
The report goes on:
“People’s first priority at the end of life is to be free from pain and discomfort (78% of respondents said this would be important to them), followed by being surrounded by their loved ones (71%) having privacy and dignity (53%), and being in familiar surroundings and being in a calm and peaceful atmosphere (both 45%)”.
It concludes:
“No care setting is perfect—home, hospices, hospital and care home all have their weaknesses—but all can do more to ensure that no matter where a person dies, the experience will deliver as much as possible on the outcomes people value at the end of life”.
Turning to what sort of care people wish to receive at the end of life, a poll commissioned by Compassion in Dying, the partner charity of the campaign organisation Dignity in Dying, recently found that a majority would want little or no medical intervention at the end of life. Specifically, it found that more than half of adults—57%—would want only comfort care, 13% would want limited intervention, and just over one in 10—12%—would prefer all available treatment, so people have a range of views about what they want, which is why I believe that choice is such an important factor. Relevant recommendations have been made by Sue Ryder, Compassion in Dying and other stakeholders which I would urge the Government to consider.
Let me draw attention to one specific recommendation by Compassion in Dying, which is that there should be a positive duty on healthcare professionals to inform patients of all their rights at the end of life, including the ability to make an advance decision, or a health and welfare lasting power of attorney, if there is a reason to believe that patients may lose capacity.
The wider issue of assisted dying is surely one of conscience, and it is a matter for Parliament to resolve rather than the Government. I welcome the Assisted Dying Bill that has been tabled by my noble and learned friend Lord Falconer. It seems inevitable, as an issue of conscience, that this choice must be enacted and safeguarded separately from other initiatives to promote patient choice at the end of life. I recognise there is opposition from some quarters to this approach—I have heardit before in this House and in Grand Committee—but I sincerely believe that at the end of life people have the right to choose to be free from intolerable pain and discomfort, provided it is their free choice.
Of course palliative care can alleviate much pain and discomfort, but not in all cases for all people, so assisted dying, with safeguards, is but one of many legitimate choices dying patients should have.
I return to the experience in Oregon, which of course introduced assisted dying about 15 years ago. All the assessments conclude that the law worked safely. Eligibility has never been extended beyond terminal illness, nor has there been pressure for it to be extended. Numbers are very low. Assisted deaths have remained stable since 2008 at around 0.2% of all deaths per year. There is no evidence that potentially vulnerable groups are negatively affected. Around 40% of dying people who meet the strict safeguards to obtain life-ending medication never use it, simply taking comfort in having the option. That is a crucial point. It means in practice that people in Oregon who are terminally ill and in great pain can be in hospice care, knowing that if things become intolerable for them, they can opt to take the medication that will end their lives. Because people in Oregon feel that they are in full control, they seldom exercise that choice. That, to me, is one of the particular arguments in favour of a change in the law.
Compare that with the position here, where people have to agonise over whether to make the journey to Switzerland before they are really ready in their own mind to end their life. Yet they worry that they may be too ill to make that journey. This seems to be an intolerable dilemma which we impose upon people. Assisted dying and palliative care are not, and should not be, alternatives. As was stated by the noble Earl, Lord Arran, in a debate last week, the former chief executive of the Oregon Hospice Association, Ann Jackson, told the Select Committee on my noble friend Lord Joffe’s Assisted Dying Bill that the Oregon Act had not adversely affected the hospice movement. In fact, hospice provision had improved in Oregon since the passage of the Act. Last year, 97% of those who had an assisted death in Oregon had been enrolled in hospice care.
Assisted dying and palliative care are therefore complementary. Choice at the end of life does not begin and end with where you die. Within safeguards, and in line with public opinion, dying people should not have to suffer against their wishes. It is time for change. If we entrust dying patients to refuse potentially life-prolonging treatment, we should also entrust them to choose whether they want an assisted death.
We had a debate in Grand Committee last week. I was not very happy with some of the comments made from the government Front Bench, particularly using words such as “killing” and so on. It limited the argument and was not very helpful. Present law and practice allow doctors to administer sufficient doses of pain relief to end a patient’s life, so long as they can argue that it is not their direct intention to end life but to minimise suffering: the principle known as “double effect”. These things occur, so there is not that steep threshold over which we should go, as has been suggested.
The beauty and nature of choice is that it accommodates different views. Within reason, it accommodates the views of those who wish to prolong life as much as it accommodates the views of those who wish to hasten death at the end of life. While it is the job of Parliament, the Government and healthcare professionals to ensure that people’s choices are informed at the end of life, where necessary through upfront safeguards, we must also find it within ourselves to respect people’s choices even when they differ from ours. That is the message I want to leave with your Lordships today.
Lord Dubs
My Lords, it was a privilege for me to secure this debate, in which there were some outstanding contributions. It was also very humbling to hear matters of conscience discussed so openly and with such obvious honesty and sincerity. I pay tribute to the right reverend Prelate the Bishop of Sheffield. I hope we will hear from him many times in the future, but perhaps on issues where he and I are in agreement. I am grateful to the Minister for the way she has dealt with this and to my noble friend on the Front Bench. All I can say is that we are going to debate these issues again and again.