Gordon Brown, The Guardian.
Our obligations to each other are ill served if laws focus unduly on those who want assisted dying. The priority should be the best palliative care.
As MPs prepare for the final decisive votes this Friday on one of the most consequential laws of our generation, an act that could determine a person’s right to live or die, they should take time to consider the fundamental flaws in the bill that have been exposed during the debates of recent months.
For it has become clear that whatever views people hold on the principle, passing the terminally ill adults (end of life) bill into law would privilege the legal right to assisted dying without guaranteeing anything approaching an equivalent right to high-quality palliative care for those close to death.
I understand the often-cited case for assisted dying – that we should not deny terminally ill people the freedom to choose. But there is no effective freedom to choose if the alternative option, the freedom to draw on high-quality end-of-life care, is not available. Neither is there real freedom to choose if, as many fear, patients will feel under pressure to relieve their relatives of the burden of caring for them, a form of coercion that prioritising good end-of-life care would diminish.
Every year, more than 600,000 people die in the UK. It is estimated that between 75% and 90% of them should have the benefit of palliative care, and that 100,000 terminally ill people do not receive the palliative care that they need. The charity Cecily Saunders International estimates that demand for this type of care is expected to rise by 42% by 2040. Access to such care is perhaps the country’s worst and least defensible “postcode lottery”, a person’s fate depending on whether there is hospice help nearby and whether places or home care are available.
Delaying legislating until the recommendations of the recent commission on end-of-life care – drawn up by MPs, doctors and charities, who propose guaranteeing new rights to and resources for those seeking palliative support – are incorporated into our NHS would begin to end the imbalance between the right to assistance in dying over the right of the dying to assistance in living. For at one and the same time, the bill removes the need for final judicial approval for legalised dying, while it contains no equivalent measures to make it easier for hard-pressed hospices to obtain the resources that would guarantee high-quality care. In fact, in polling carried out in November last year by Focaldata for the campaign group Care not Killing, a big majority – 66% – of respondents agreed that “the government should sort out palliative and social care first before considering legalising assisted suicide”.
Better end-of-life care is surely the priority. Last year Hospice UK, which represents more than 200 hospices, said that one in five were warning of cuts to services, and this year the position seems worse. Just last month, for example, the Kirkwood hospice in Huddersfield announced it has been forced to cut its beds from 16 to 12, as well as reducing home support, with the result it will serve 800 fewer patients each year. This is now a pattern – from St Giles in Lichfield, St Catherine’s in Crawley, to Birmingham Hospice and Hospiscare in Exeter. Late last year, Hospice UK estimated that 300 beds in England are out of use because of insufficient funding. And with integrated care boards required to manage their expenditure within funding constraints set nationally, only about 60% of NHS hospitals provide seven-day on-site specialist palliative care, and only a third of localities have out-of-hours access.
We don’t yet know whether, and for whom, the government will be prepared to cover 100% of the costs of assisted dying. What we do know, however, is that, on average, a hospice patient is publicly funded for barely a third of his or her costs. And so MPs are being asked to pass a bill in the full knowledge that, whenever it is implemented, the services available to all those who would prefer assisted living to assisted dying are inadequate. “The lack of a cohesive national strategy for effective palliative care delivery has resulted in fragmentation of specialist palliative care services,” said the recently published commission on end-of-life care, “with inequity of provision, confusion over who takes responsibility for each patient, and lack of advice and support to the public and to staff in all services.”
If the bill were to go through, anyone who was terminally ill might be faced with a dilemma: they could exercise the right to apply to die under the legislation by referring to two doctors and an expert panel, but they might continue to find it difficult to exercise their right to access quality end-of-life care. While I could apply directly to the proposed new panel to enforce my right to die, the process if denied quality palliative care is difficult and complex. I would first have to file a complaint with the healthcare provider – for example to the patient advice and liaison service for hospitals, or a localised complaint process for primary care. Once this process was exhausted, I would then have to ask my MP to make an application to the parliamentary and health service ombudsman (PHSO), whose website says that the current waiting time is seven months – and that would be before a caseworker was assigned, which also takes months, delaying still further the time before what should be an urgent judgment could be made.
I understand the pressure on MPs from those who are in desperate pain, and who want relief that is not currently available to them. But as the palliative and end-of-life care commission’s recently published report tells us, pain relief is becoming possible for almost every terminal illness and the government should make it a medical imperative to ensure this will continue to improve.
I also understand that MPs will be advised by many that the sum of their responsibilities is the avoidance of unnecessary harm. But irrespective of whether you see life as a gift, and notwithstanding any religious convictions or the lack of them, an MP’s personal preferences cannot be separated off from the duties they have as members of a community to ensure that the way we treat the dying reflects the values of a decent, compassionate country. That should mean upholding the role of the medical professions as care-givers, and exclusively care-givers; avoiding the possibility of private profiteering by legal-medical consortiums which might well commercialise assisted dying as a lucrative business; safeguarding vulnerable people about whose fate the royal medical colleges have all expressed concern; preventing unacceptable coercive pressures that can be brought to bear on disabled people, and those who are incapacitated or mentally stressed; and thus showing that as a society we value life above death.
These concerns can be best addressed by speedily implementing the report of the end-of-life care commission. For none of our obligations to each other are well served if our laws focus on the few who wish for assisted dying and do too little to support the majority of those facing their final days who want – and deserve – access to the best of palliative care.
