The Access to Palliative Care Bill was brought before the House of Lords by Baroness Finlay (pictured), an experienced palliative medicine physician, Past-President of the British Medical Association and chair of the National Council for Palliative Care. Its official purpose is 'to make provision for equitable access to palliative care services; for advancing education, training and research in palliative care; and for connected purposes.'
She told Peers gathered to consider the Bill's progression:
Inadequate care is not a few isolated incidents. National audits... all say the same: many places provide excellent care but provision is patchy and varies in quality, accessibility and reliability... We all know what to do—we have strategies, working parties and reports galore—but we are just not doing it all the time, everywhere. Why not? The demands on clinical commissioning groups are great. They are well intentioned, but drowning. They need a clear, simple template to bring up the standard of services. Importantly, patients and their families, faced with all the fears and uncertainties of discovering that this is likely to be their final illness, need and deserve the assurance that their care will be good and that they will not be abandoned or failed in their hour of need, wherever they are, whatever the time or day of the week.
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The Bill is a chance to finally get it right for all... It would narrow the widening gap in hospice provision between affluent and poorer areas. It would ensure access to hospice care for those with non-cancer diagnoses.
Commenting on the cost implications of her bill, Lady Finlay said:
...we do not live in an NHS of plenty; we hear daily of cash-strapped services, of deficits, of failing to meet priorities. There are 15 million people living with one or more long-term conditions. Their admission to hospital is often avoidable.
Cicely Saunders Institute research showed that early integrated specialist palliative care significantly improved quality of life for patients with severe respiratory disease at no additional cost. Sue Ryder's Bedfordshire partnership provides out-of-hours support, resulting in lower emergency hospital admission rates.
Cancer patients receiving palliative care are half as likely to attend the emergency department in the last month of life. Those with pain and poor care are more likely to have multiple emergency department visits in the last two weeks of life. The Nuffield Trust estimates that over that last three months of life the cost of end-of-life care in a hospice is around £550 per person, compared with £4,500 per person in a hospital—an increase largely due to emergency admissions that could have been avoided.
A new palliative care service for people with severe multiple sclerosis improved pain and care-giver burden, at a total cost saving of almost £2,000 per patient over three months. Coordinate My Care, developed by the Royal Marsden, has ensured that three-quarters of those who died while on the programme did so in the place of their choice, with an average saving of more than £2,000 per person.
Outlining the purpose of her bill, Lady Finlay said:
It would ensure that wherever a dying person is, whatever the time of day or night, whatever day of the week, they can receive high-standard care. How would it do this? It would do so by ensuring that commissioners commission a level of service for their populations to meet need. If you are a patient with complex needs and things become difficult, you cannot access a specialist service if it is just not there. You cannot expect staff to meet your needs if they do not know what to do and have no one to ask for help. You cannot access medication at home if your needs change, if there is no local way to get that medication urgently, and if the out-of-hours provider does not carry even the basics because they will not pay £4,504 to be licensed to hold an emergency stock. If you need equipment, you cannot wait days or weeks for it. Electronic palliative care communication systems promote better co-ordinated timely care, avoiding inefficiency and duplication. They need to be everywhere. My Bill would ensure co-ordination so that help is accessible, efficient and can meet needs. It is often said that good care costs less than bad care. Sensitive attitudes and caring behaviours by staff cost nothing, but they transform the quality of the patient and family experience.
Health Education England has indicated that it would welcome this Bill to ensure core education and training everywhere. Currently, only one-fifth of trusts have mandatory training in care of the dying. And research is essential to drive forward improvements; it is not a bolt-on.
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The stories of people dying at home in distress through failures of commissioning have to stop. We know what to do but we are just not always doing it. At the end of the day, no amount of nice words will make commissioners ensure that they have in place the services to meet their population's needs.
Why legislate for this and not for other services? It is simply because everyone will die. No other area of healthcare has 100% certainty, so this will not set a precedent. This is the time to make the good care of everyone who is dying a given.
25 peers spoke in the debate, including Lady Finlay's fellow physicians Baroness Hollins and Lord Ribeiro; former Chief Executive of the NHS and Permanent Secretary at the Department of Health Lord Crisp; and Chairman of Hospice UK (and former Conservative leader) Lord Howard of Lympne. Referring to the hospice movement in the UK, Lord Howard told the House:
I am proud to stand here and say, without any fear of contradiction, that the care provided by hospices, both in hospices and for people who die at home looked after by hospices, is second to none. The recent ONS survey found that 85% of bereaved people whose relatives had died in a hospice or at home looked after by a hospice thought that the care they had received was "excellent" or "good".
...hospices do not deliver professionalised care. Of course many of the people who work in hospices are professionals, but there are very many volunteers too. To illustrate the difference between hospices and hospitals, I tell the story of a man who was very reluctant to go into a hospice. Eventually, he was persuaded to by his family. When he got there, the first thing they said to him was, "Is there anything you really want?". He said, "The one thing I would really like is a bowl of porridge", and, within half an hour, he was provided with a bowl of porridge. With the best will in the world, no one can imagine that happening in any of our hospitals.
The ratings for hospices, which I have mentioned, are far superior to those that hospitals receive. So I repeat today my call to the Minister for help in reducing the number of people who die in hospital. Most people do not want to die in hospital—they do not need to die in hospital and they should not have to die in hospital. It would actually save the NHS money if these people were not in hospital but were transferred instead to hospice care.
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I particularly welcome the provisions in the Bill which would place a duty on clinical commissioning groups in relation to the funding of palliative care. Three-quarters of hospices have had their NHS funding, which on average provides only a third of their costs, either cut or frozen in 2014-15. The record of hospices in meeting the shortfall from charitable sources is breathtaking. Collectively, 200 charitable hospices in the UK raise £1.9 million a day from local charitable sources. It is an extraordinary achievement, but if that shortfall is increased, as it has been, it will be increasingly difficult for hospices to continue their successful work.
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The Economist Intelligence Unit survey quoted the words of the national director for hospice care at Hospice UK. She said:
"The things that make a better death are so simple … It's basic knowledge about good pain control and conversations with people about the things that matter".
This Bill will help bring about a better death for many people. On behalf of the hospice movement, I whole- heartedly welcome it.
Lord Prior is to be credited for reminding the House that good palliative care is not the preserve of hospices, despite the many challenges faced by specialist and generalist providers:
However, in praising the hospice movement and the care that it delivers at home, let us reflect for a minute on how difficult it is to provide good-quality palliative care in a very busy acute hospital. It is true that they probably do not do it as well as it is provided in hospices, but, given the circumstances, they often do a remarkable job. My noble friend [Lord Howard] referred to the bowl of porridge that was provided in a hospice. I refer him to the Wrightington Hospital, where a lady coming near to the end of her life said that her one last wish was to see her horse. They brought the horse to the hospital and wheeled her down to see it. We do see these extraordinary acts of kindness and compassion in NHS hospitals as well. That is the first point that I would like to make: the UK does this pretty well.
Lords Warner, Davies of Stamford and Quirk sought to link the debate with that on assisted suicide, although Lord Davies conceded that any renewal of such proposals would not happen until the next Parliament. Lord Suri told the House that his reasons for opposing the Falconer Bill informed his approach to the Bill before the House that day, while Lord Cavendish of Furness lamented that the subject should have been raised at all, given the Marris Bill's heavy defeat in the Commons in September. Baroness Finlay took up this theme, saying:
I am saddened that some have tried to link this Bill with the debate on the Assisted Dying Bill. The House of Commons looked at the proposal for physician-assisted suicide very comprehensively and has spoken very clearly. That Bill is unsafe and should not be brought back into either House of Parliament. It is actually an abuse of the House even to think about doing so. If people want assisted suicide, then go away and write a Bill that is safe, but do not saddle doctors in palliative care with it. They are the group that wants to provide better care and do not want to be involved in such a process. Those doctors also have the right to behave ethically and to do what they want for their patients; they do not want just to give in to demands.
Speaking for the Government, Health Minister Lord Prior of Brampton observed that 'there seems to be violent agreement from all sides of the House on the substance of her Bill, and so I congratulate her on the support that she has garnered, which of course goes way beyond noble Lords in this House... [but] I am afraid, however, that the Government cannot support the Bill'. He outlined two reasons for this:
...we do not feel that primary legislation is the right way of tackling the issues raised because it could lead to unintended consequences. Most importantly, we feel that it attempts to deal with issues that, in the main, are best tackled by clinicians, ideally together with patients, carers and loved ones, based on a combination of the patient's individual condition, preferences and the clinician's professional expertise.
...we feel that the Bill goes against the whole concept and principle of local autonomy that was established in primary legislation through the Health and Social Care Act 2012. I accept that clinical commissioning groups are still in their infancy—they have only been there for just over two years—but they are bound by a duty to commission health services based on the assessed needs of their local population, and palliative care is included in that stipulation. There is also concern that legislation on this issue as set out in the proposed Bill could stifle local innovation by NHS bodies, including commissioners, as they seek to improve the quality of care and provision.
Baroness Finlay, who is also palliative care lead for Wales, replied:
I believe that patients and relatives out there, hearing that the Government do not support legislation that would drive up standards of palliative care provision, will be horrified. This has not been plucked out of the air. In Wales we have been doing this for seven years. It is a template as the result of a natural experiment between England and Wales. Through the Bill, we are trying to share best practice.
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This is not the Liverpool care pathway in another guise. In fact, I have to say publicly that we did not adopt the Liverpool care pathway in Wales because we predicted that it would run into trouble. We developed a slightly different, modified system of our own.
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...this Bill will not stifle innovation. In fact, it will make sure that there is innovation because research has set out in the Bill. It will make sure that those who provide specialist care have to keep up to date with what is going on and participate in research. No longer will they be able to duck out of it using all kinds of weasel words and excuses about wanting to protect patients from people who want to find better ways of care and thus improve it.
She expressed alarm
... at the thought of care being discriminatory against people on the basis of age and so on. As for people wanting to be cared for at home, I am cautious about anything that tries to put into legislation specific pathways of care because people change their mind. I have had patients change their mind about what they want and where they want to be in their dying moments—not about the place of care, but even about trying chemotherapy or asking for a second opinion about surgery. We have to be flexible all the time with our patients until they are dead because they may change their mind about what they want in the last few minutes. It may be a minor issue, such as whether the family is in the room or out of it, but those wishes need to be respected.
...I want every person dying in this country to be secure in the knowledge that they will get the care they need, but I am afraid that the response I have had today from the Government does not give me that assurance.
The Bill was read a second time and committed to a Committee of the Whole House, with a date yet to be set.
