Dominic Whitehouse: Unless amended, the assisted dying legislation will force hospices to close

Dominic Whitehouse is a consultant in palliative care at a south coast hospice.

“You matter because you are you, and you matter to the last moment of your life. We will do all that we can not only to help you die peacefully, but also to live until you die.”

This is arguably the best-known quotation of Dame Cicely Saunders, founder of Britain’s modern hospice movement. Dame Cicely first started working at St Joseph’s Hospice in Hackney. There she understood that every life was valuable, no matter the pain and suffering. The role of palliative care was to affirm that inherent dignity in every life, especially when naturally nearing its end.

This philosophy is part of a global understanding of palliative care, which, according to the World Health Organisation, regards dying as something that is normal, and neither aims to hasten nor postpone death.

As a palliative care doctor, I see this philosophy flourishing in our hospice communities. Hospices continue to be places where the fullness of humanity is experienced: smiles, laughter, tears, and sadness. On ward rounds, I see people with a small number of weeks, or even days, to live, happily chatting with family, or perhaps anticipating an ice cream at the beach, sometimes excitedly planning a wedding or other event.

I also see anger, deep depression, and despair, and hear howls of anguish. Patients and families switch from one emotion to another astonishingly rapidly.

Come what may, our expert team of health professionals, volunteers, and domestic staff come together for them, re-building the calmness and comfort needed for the dying, through skilled psychological and spiritual support, and expert use of powerful medications.

This works because all those involved – staff as well as patients – trust the ethos of British palliative care, which has hospices as its bedrock. Our local community – individuals, charitable groups, businesses – really value what we do. They must do, because they are the ones who, year on year, dig into their reserves to fund us.

Palliative care (in which the hospice movement plays a vital part) is the one part of the healthcare sector in the UK in which the mixed provision of voluntary, charitable, religious and state sectors work together, much as they do in the healthcare sector more generally in most of continental Europe. The institutions involved in palliative care should be especially valued by Conservatives.

Sadly, over 60 years on, the dignity-affirming essence of the British hospice movement, based on accompaniment and compassion, is at risk of being lost.

Policies influence culture, and culture influences policies. Currently, it costs over £1.8bn a year to run all the UK’s hospices. Of this, just over a quarter, or sometimes as little as 11 per cent, is provided by the government, with the rest being raised by hospices themselves.

The government recently made a one-off investment of £100m into hospice care, described as “the largest investment in a generation”. This sum is both tiny and is not likely to be repeated – unlike costs, which seem to rise unabated and are incurred year after year (for example, the recent hike in employers’ National Insurance contributions).

Hospice services are being severely cut back, and redundancies of specialist staff, cuts to services, and closure of beds mean more people face terrible deaths without our support. Hospice UK, meanwhile, estimates that, with an ageing society, demand for hospice care will only increase. An astonishing “90 per cent of people who die in the UK could benefit from receiving palliative care” – nowhere near the numbers we are able to cater for.

In the midst of this grim landscape looms the spectre of Kim Leadbeater’s bill. Seeking not only to legalise assisted suicide but also to mandate its provision by the state, it is casting deep gloom across palliative care.

Evidence from jurisdictions where assisted suicide is already legal suggests that increases in palliative care provision in such places are much less than in countries where assisted suicide and related practices are not permitted. At the same time, in some of these countries, assisted suicide is considered as end-of-life care, lumped together with palliative care, and so competes for the same sources of funding.

Unfortunately, the Bill Committee failed to include evidence from impartial international experts on this issue.

It did hear notes of caution from some oral witnesses, including the co-chair of the Association of Palliative Care Social Workers, the CEO of Sue Ryder, and the President of the Association for Palliative Medicine, warning that people will choose an assisted suicide to escape unbearable suffering because of lack of access to good palliative care, which effectively denies patients choice. They also expressed concerns about assisted suicide impacting palliative care resources, funding and the workforce.

The committee also received hundreds of written submissions which expressed similar and other concerns. However, due to the undue haste with which this legislation is being pushed, expert testimony from lawyers, psychiatrists, disability groups and others, risks being buried.

Despite this and other strong evidence, the committee still decided to reject an amendment which would require all patients requesting assisted suicide to meet with a palliative care doctor and understand the alternatives. Is that because they know that, if the bill passes, there will be little, if no, alternative to assisted suicide?

This bill poses a real danger to the whole future of the hospice movement. The Secretary of State will be obliged to make regulations to ensure that assisted suicide is widely available. It is now clear that hospices will not have an opt-out from offering it – and may even have government funding withdrawn if they refuse to offer it.

This is not scaremongering: the bill committee rejected amendments to protect hospices and Kit Malthouse, a bill sponsor, suggested that funding could be withdrawn – evidence to the bill committee has expressed the same concern.

Furthermore, hospices will not be able to prevent staff acting against hospice policy to facilitate assisted suicide for a patient there. It is probable that equality law will be used, for example by a disabled person, to insist that a hospice must make assisted suicide available to him or her.

Many hospices will not be able to co-operate with assisted suicide this way and will have to withdraw their services, leaving millions with no palliative care options.

Again, this is not scaremongering: the bill committee has received evidence warning about this. And the CEO of Hospices UK has stated: “The implications for hospices must not be underestimated or sidelined. There are huge unanswered questions.”

This is not only a healthcare issue, but an attack on the independence of key civil society institutions – a freedom about which Conservatives ought to care deeply.

As a palliative care practitioner, I know that the choice of British patients at the end of life is already limited. With this bill, the death knell is sounding louder and nearer – for our services and our patients.