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Choice at the end of life: hospices and assisted dying

Author: Mark Jarman-Howe
26 February 2018

Mark Jarman-Howe, hospice Chief Executive and Director of Dignity in Dying, shares his opinions on assisted dying.

This month I spoke to a packed out audience at the Royal Society of Medicine (RSM). The event, Choice at the end of life, featured a range of eminent speakers from the fields of palliative care, law, regulation, and crucially, those with personal experiences of death and dying.

I was asked to speak because I am one of the few hospice CEOs who has stated that they are publically supportive of hospice and palliative care and also of the campaign to legalise assisted dying.

My talk focussed on Oregon, the assisted dying ‘laboratory’. Oregon legalised assisted dying in 1997, and following a steady acceptance of the practice amongst dying people and doctors, assisted deaths still only account for less than 0.5 per cent of total deaths. Crucially the much discussed ‘slippery slope’ has not manifested itself; there have been no cases of abuse and no extension of the law’s eligibility criteria.

The Oregon Hospice Association initially opposed law change but now supports the rights of dying people to exercise control over their deaths. In its position statement on the law the Association says “Oregonians need not choose between hospice and [assisted dying]. Dying Oregonians can choose both from among the options on the end of life continuum of care.”

Earlier in the day Dr Catherine Forest provided a fascinating insight into how assisted dying works in practice in California, which is now one of five US States (plus Washington DC) that has adopted the Oregon law. Dr Forest explained how the use of hospice and palliative care services have increased dramatically following law change. Doctors are more confident to make referrals and patients, even those that do not want to explore assisted dying have a greater understanding of what end of life options are available to them. All of this echoes the evidence emerging from California showing that assisted dying has triggered dramatic improvements to all aspects of communication around end of life.

In contrast to this, Julie Smith shared the moving experience of her husband Paul in the UK. Following a diagnosis of prostate cancer which had spread to his bones and lymph nodes, Paul wanted to end his life at Dignitas. He was prevented from exercising this choice by his GP, who after seeking legal advice told Paul that he was unable to provide the necessary paperwork Dignitas needed. Julie featured in research commissioned by Dignity in Dying last year - The True Cost: How the UK outsources death to Dignitas. The report is recommended reading for anyone with an interest in death and dying in the UK. Julie’s story is a reminder that there are problems with the current law that we cannot ignore.

The event also provided a platform for alternative views. Juliet Marlow, from the organisation Not Dead Yet, set out her opinion that assisted dying may negatively impact on the relationship disabled people have with their doctors. Professor Rob George explained his personal moral objection to law change. Baroness Ilora Finlay disagreed with Dr Forest and outlined why she feels evidence from overseas provides cause for concern.

In light of this I was interested to hear both Professor George and Baroness Finlay suggest that if assisted dying is legalised in the UK it should sit away from palliative and hospice care. I personally find this line of argument unconvincing. I believe hospices are best placed to be involved in assisted dying, to talk dying people through alternative care options, to provide a compassionate environment where people's choices are respected and to support family members through bereavement. In my view assisted dying is completely in line with the ethos and values of modern hospice care and if we withdrew our expertise at a time when they are needed most then I think that sends a potential harmful message about our sector, and who it is we are here to serve.

I passionately believe that wanting to give dying people greater access to palliative care services and a method of controlling the manner and timing of their deaths are both very important and complimentary aims. I hope Baroness Finlay will seriously consider my proposal for a future piece of legislation combining an assisted dying Bill with her Access to Palliative Care Bill.

As with speakers on stage there were a range of views amongst audience members on the day, with one GP from Wales accusing those medical professionals who oppose law change as paternalistic, yet others warning of the potential dangers of assisted dying. Yet from my perspective the prevailing feeling amongst those present was a desire to move beyond the polarised debate we have historically on this subject and instead create more opportunities to learn from overseas evidence and people’s very personal, but very real, first hand experiences of dying. I congratulate the RSM for being the first major medical organisation to grasp this nettle and host such an event and I am sure they will not be the last.

The day before the RSM event the BMJ asked ‘Why is the profession so out of touch with the public?’ and called on the British Medical Association and others to adopt a neutral stance on the issue to better inform the debate. I am pleased that Hospice UK has no collective view on assisted dying and that at the same time hospices have been encouraged to openly discuss assisted dying and consider the implications of a change in the law.

I do not believe this is a clear cut argument - there are complex issues on all sides of the debate and no simple answers. But dying people look to hospices to lead societal conversations and to advocate on their behalf. I hope that whatever people’s personal views on assisted dying, these are things we will all always strive to do.

See more articles in Opinion

Comments | 4 comments


Hospice UK

Thanks for your comment, we’ll consider the points you raise and we’ll be in touch with you directly.

08/03/2018 13:06:29

Claud Regnard

Unless the 220 organisations are formally balloted Hospice UK does not know the view of its members. A lack of response in November is not a valid reason to claim there is no view.
Three years has now elapsed since the 2014 statement and Hospice UK is a new organisation that includes the NCPC (which had an unequivocal view opposing a change in the law). A formal ballot of members is now required before Hospice UK can make any statement regarding assisted suicide.

02/03/2018 12:34:57

Hospice UK

Hospice UK has no collective view regarding the issue of whether the law should change to allow ‘assisted dying’ or ‘assisted suicide’. This is on the basis that our organisation represents over 220 member organisations, most of which have not stated a clear position on this matter.

Our position on assisted dying was decided by our Board – whose members include hospices - in November 2014 and has not changed since then.

We recently contacted our members reiterating our position on this issue - before our national conference last November. At that time we did not receive any feedback from members questioning our current position.

More details about Hospice UK’s position are available on the Policy section of Hospice UK's website.

01/03/2018 15:04:10

Claud Regnard

Mark Jarman-Howe's comment that Hospice UK has 'no collective view' on assisted suicide is puzzling. Although Help the Hospices did make such a statement in late 2014 during its transition to Hospice UK this was followed by many hospices, the National Council for Palliative Care (NCPC) and the Association for Palliative Medicine making clear their opposition to a change in the law.

27/02/2018 18:11:21

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