12:14, November 22 225 0 theguardian.com

2019-11-22 12:14:08
The need to talk openly about assisted dying

Your interview with hospice CEO Mark Jarman-Howe struck a chord with me (‘Why am I the only one speaking out on assisted dying?’, 20 November). Finally, here is a representative of the end-of-life care sector publicly admitting that a minority of people die in terrible suffering – something that the most expert care, the strongest drugs in the world and all the good intentions of scented candles and gentle background music cannot always alleviate. I know this to be true. My 37-year-old sister died of bowel cancer five years ago and I still remember images from her final weeks every single day.

When I recently tried to share the truth about her death, I was shocked to find I was shouted down, patronised or ignored by several medical professionals on social media. Whether or not one agrees with the principle of assisted dying, it needs to be acknowledged that some deaths cannot be “managed” perfectly and peacefully. Until we can accept the reality that palliative care has limits, more than 6,000 people a year will continue to suffer horrific deaths, like my sister’s.

Elizabeth Atherton


As a hospice CEO I could not agree more with Mark Jarman-Howe. While I am a relative newcomer to this sector, I recognise there is clear scope for us to take a more proactive role in the assisted dying debate. My background is in mental health, where providing space for open, honest and non-judgmental conversations is a must. How can the hospice sector provide leadership on issues around death and dying if we are not prepared to engage with an important societal debate which is going to affect us? We are not just doctors; we are nurses, care assistants, allied health professionals, domestic staff, kitchen staff, administrative staff and an army of volunteers – all of whom no doubt hold a range of valid insights.

There should be a parliamentary inquiry into the current law. To support such efforts, the hospice sector needs to gather the views of its staff and volunteers – an exercise it last conducted over 15 years ago – and use this evidence, and our broader expertise, to inform the debate.

David Smith

Chief executive, Teesside Hospice

As a former CEO of Sue Ryder I have spent a large part of my life ensuring dying people have the appropriate care and support to provide them with a peaceful death. Sadly, despite the best efforts of even the most skilled clinical teams, this is not always possible. So I agree with Mark Jarman-Howe and believe assisted dying should be a safeguarded choice that sits alongside current end-of-life practices. While others in the hospice sector may disagree with assisted dying in principle, it is plainly wrong if, as Jarman-Howe suggests, there is now a climate of fear around even discussing this issue.

In Oregon, where assisted dying has worked safely for over 20 years, the hospice association dropped its opposition to legislation as soon as it saw how well it worked in practice. Relatively few people in Oregon utilise the option, but many more take comfort in knowing it exists. There are an increasing number of jurisdictions around the world that have followed Oregon’s lead and we have a responsibility to learn from their experiences. The status quo in the UK results in many dying people being forced to suffer in their final days, weeks or months. The hospice sector is full of compassionate, innovative, free-thinking individuals; it must show leadership on this issue and help modernise the UK’s approach to death and dying.

Paul Woodward

Fressingfield, Suffolk

Mark Jarman-Howe is right to call for a change in the law. As police and crime commissioner for Dorset and national PCC lead for suicide, I see how the current blanket ban on the practice is enforced and I have grave concerns. The law is supposedly in place to protect the vulnerable, but it is failing in that respect.

Banning assisted dying drives the practice underground or overseas, with deaths taking place without oversight from UK authorities. Family members are stepping in to fill this gap, but some are then criminalised for their compassion, while other cases are never even investigated because of the scattergun approach to prosecutions. Before the election was called I, Durham PCC Ron Hogg and several other PCCs wrote to the justice secretary calling for an urgent inquiry into the functioning of the current law. I implore the new government to commit to a call for evidence so the wide-ranging impacts of the assisted dying ban can be assessed in full.

Martyn Underhill

Dorset police and crime commissioner

It is clear, as Mark Jarman-Howe says, that “even the very best palliative care has its limits”. My sister-in-law was offered palliative care but chose to end her life at the Dignitas clinic in Switzerland when her mesothelioma reached the “end stage”. Even with sedation and pain relief, she was unwilling to face a death by slow asphyxiation. Her death was calm and peaceful, but she would have rather been in England.

Jarman-Howe reminds us that over three-quarters of the terminally ill would favour some form of medically assisted death. Alas, as he points out, the UK hospice movement is “behind the curve” of public opinion and the necessary discussions are not happening. Other experts in this area, including hospice nurses and doctors, need to match his courage and open this debate up in the clinical sphere.

Jean Farrer

Dudswell, Hertfordshire

I worked in a hospice for 13 years, and I agree with Mark Jarman-Howe. This time last year I accompanied my lovely mum to Switzerland to die. My mum would have loved to have died at home surrounded by her family. Instead we had a lonely and difficult year planning her demise and equally lonely one-way trip to the clinic. Can we please start talking?

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