Access to Palliative Care Bill [HL] - Second Reading

Part of the debate – in the House of Lords at 11:20 am on 14th June 2019.

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Photo of Baroness Meacher Baroness Meacher Crossbench 11:20 am, 14th June 2019

My Lords, along with others I applaud the noble Baroness, Lady Finlay, for proposing this important Private Member’s Bill. It is surely a cruel anomaly that NHS funding for palliative care seems to depend on where you happen to receive that care, whether it is in hospital, in a hospice or at home, when there is no more important time to have proper funding for high-quality care. I should declare my interest in this debate as chair of Dignity in Dying—a non-remunerated position, I must emphasise.

The explanation for the Government’s refusal to support an earlier palliative care Bill, given by the noble Lord, Lord Prior, when he was Parliamentary Under-Secretary of State at the Department of Health was quite extraordinary. I do not blame the then Minister: he was giving the Government’s position. Nevertheless, he talked about palliative care as an issue best tackled by clinicians, ideally with patients, carers and loved ones involved. Is there any NHS care to which that description does not apply? All NHS care is of course about clinicians providing the care and, we hope, relating to patients, carers and others. The issue is whether the NHS funds those clinicians who provide the care in palliative care settings, and of course it should.

Marie Curie has raised the opportunity cost of not providing comprehensive palliative care across the country. This is one of the most important points for the Government to take seriously. The charity refers to the 1.6 million emergency admissions in the last year of people’s lives, which amount to 11 million hospital days—an enormous cost implication. I would be grateful if the Minister would ask the department how many of those hospital admissions could have been avoided if palliative care in the community had been available everywhere. I emphasise that the NHS needs to know that information. What would those savings be and how would they compare with the cost of providing the necessary palliative care? My hunch is that the investment in comprehensive palliative care would be found to be cost-effective for the NHS, quite apart from the huge benefits to patients and their families.

As the noble Baroness, Lady Brinton, and the noble Lord, Lord Low, have indicated, a number of provisions included in earlier versions of the Bill are not included in this one. I hope we can do something about that in Committee. I understand the analogy used by the noble Lord, Lord Balfe, about hedges, but these are little hedges as far as the Government are concerned. Yet these little hedges could have a massive impact on improving end-of-life care.

In particular, along with others, I want to see introduced in Committee a duty on clinical commissioning groups to fund support for patients to meet their preferences in care. Too often, people do not receive the care that they really want, which is ridiculous. It is terribly costly and terrible for the patient. Most importantly, I want advance decisions to refuse treatment to be included in the Bill. These are advance decisions under Section 24 of the Mental Capacity Act 2005. The process of advance care planning increases the use of hospices and palliative care, and prevents hospitalisation towards the end of life. The process also improves communication between the patient, their family and the healthcare professionals, while reducing stress, anxiety and depression, as others have said. It is a tragedy that only about 4% of people in this country have completed an advance decision. It cannot continue like that if we really want good-quality end-of-life care. I hope noble Lords will support introducing advance care planning in some way into the Bill in Committee. I can think of few things that are so important if we want patients to drive what they receive as care at the end of their lives. These changes would mark a significant step away from traditional paternalistic approaches to healthcare at the end of life, and towards truly person-centred care.

I also strongly recommend that a clause as set out in Clause 3 of the 2016 Bill on supporting professionals to provide care, particularly in line with the Mental Capacity Act, be introduced into the current version. We know that healthcare professionals do not always understand and implement the Mental Capacity Act. Others have referred to the tragic consequences in the recent cases of Brenda Grant and Jillian Rushton; I will not repeat the comments of my noble friend Lord Low. Reintroducing Clause 3 of the 2016 Bill would help to avoid such cases in the future.

Finally, I put it on record that while good palliative care can relieve pain and suffering for the great majority of dying people, there are some whose suffering is outside or beyond the scope of palliative care. As Professor Irene Higginson, one of our foremost experts in palliative care research, said recently:

“More than 85% of palliative care patients have no severe symptoms by the time they die”.

Of course, this means that up to 15% of patients do suffer extreme or very severe symptoms before they die. Some of these patients will have their symptoms partially controlled, but others will not and they will experience the most dreadful suffering in the weeks before their death. In the autumn, Dignity in Dying will publish a report on such deaths; I have just read that report and it was deeply distressing to do so. Some of these deaths can be described only as barbaric. We would not do that to a rat, let alone to a cat or dog. It is really shocking.

The important point here is that however much access to palliative care is improved—I am a huge supporter of comprehensive, high-quality palliative care—there will be people outside the scope of that care. One example was of course Geoff Whaley, who may have been in one of the least traumatic and barbaric situations that I have come across. But for him, it was certainly something he could not cope with. He was a motor neurone disease patient who could not bear the prospect of being unable to move anything at all: not being able to speak, swallow, eat and drink, or to breathe without a ventilator. Some people seem able to cope rather better than others with these things but if someone cannot, it seems to me that they should not have to. Some symptoms simply cannot be palliated; in that situation, a number of patients will want to be able to choose the timing of their death.

It is not surprising that 86% of the population want access to an assisted death to be legalised, with strong safeguards—I, along with everybody else I work with, strongly support that. We want this to be legalised. I want to raise the issue of patient choice at the very end of life in Committee, while recognising that this Bill is not the right vehicle to introduce assisted dying. Here, the hedge would be far too large. However, high-quality palliative care for all, including safeguarded assisted dying for the small minority who suffer unbearably, is the hallmark of an ethical, patient-centred, end-of-life healthcare system.