End-of-life care that should be ours by right | Letters

Owen Jones (End-of-life care is vital. Why is it so neglected?, Journal, 31 January) correctly identifies that the NHS has no systematic commissioning of end-of-life services. This leads to gross inequalities and haphazard access to services. But his claim that “hospitals are designed to make people better, not to provide comfort to the dying” can only make the situation worse.

The failure of the NHS to provide adequate end-of-life care led Dame Cicely Saunders to establish St Christopher’s Hospice in 1967. The rapid profusion of charitable hospices since then has excused the NHS from stepping up to the mark. But it does need to deliver that care, not to outsource it to nearly 200 small charities. However good the care in the community, hospitals will continue to have people who are dying in their wards, and they must have the skills and facilities to give the necessary care.

In a few places, the NHS provides a hospice as part of the acute hospital, albeit in a separate building. This allows the hospice service to identify potential patients more quickly, access other medical skills when appropriate, and also to reach out both into the community and into the acute hospital wards.

The willpower that Jones refers to must be to provide the service as well as commission it properly. Only then will we all get the care at the end of our lives that should be ours by right.
Stephen Kirkham
Chair of trustees, Forest Holme Hospice Charity

Owen Jones draws our attention to the underfunding and importance of palliative care. Magnify this situation globally, particularly to countries where treatment and care is lacking for people not just with a diagnosis of cancer but other life-limiting illness. Chronic respiratory, cardiac and renal disease, dementia and long-term painful disabilities can all benefit from palliative care.

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Governments and health ministries globally need to recognise palliative care’s contribution in many areas of healthcare and the impact it could have in delivering universal health coverage (UHC). It could be a low-cost cornerstone in the implementation of UHC, yet governments, DfID and aid agencies are reluctant to fund palliative care at the scale required to meet the needs of millions who face each day with serious health-related suffering and pain.
Ruth Wooldridge
Chair, Palliative Care Works

We are failing our learning-disabled ageing. Please remember that they exist alongside those with chronic heart failure, dementia and frailty. Often they suffer those vulnerabilities as well. Please never ignore the learning-disabled and their equal right to die with comfort and dignity. Too often they have no one to fight for them and find a loving hospice place; and any parent or sibling knows the difficulty and cost of obtaining a personal welfare deputy order from the court of protection.

Recognise and include in every end-of-life article references to this huge group of disadvantaged men and women. I am aged 91 and worry daily what will happen to my 63-year-old autistic son. Talk about that part of our community, Owen Jones, and why their needs are neglected.
Michael Baron

Owen Jones rightly highlights the lack of government funding for hospices in the UK. Last year, we also experienced this first-hand, as my husband had two stays in our local hospice, within a three-month period. We also fortunately received a gold-standard service, and he was supported to return home, where he died peacefully. To our amazement, we discovered that the hospice has to raise most of its funding, a fact that not many people know until they need this service. How can this be allowed to continue?
Kathy Brown

Owen Jones is right: the way hospices are funded (or grotesquely underfunded, rather) is intolerable. Spare me the (unsustainable) jacuzzi, though. I’d be satisfied with good palliative care and space to be with my nearest and dearest, with time to say those four magic phrases: I love you, I’m sorry, thank you, and goodbye.
Alison Leonard
Hebden Bridge, West Yorkshire

My husband, John Cunliffe, the author of Postman Pat, also hoped for a “good death” at home (Letters, 1 February), but the administrative mix-ups in the provision of a hospital bed soon put paid to that. First of all the bed’s pump failed within an hour of being installed, then later on the bed was found to be too short, so John had days of unnecessary pain and misery before an engineer appeared to extend the bed, which he refused to do since John was too ill to vacate the bed, so my son had to extend it while the engineer instructed him. There was also an unusable commode provided, plus another one exactly the same the day after his death.

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On the night he died the night carer fell asleep, and it was just by chance that I came downstairs to find him in his death throes with a snoring carer by his side.

So much for a “good death” at home. I envy those who achieved it.
Sylvia Cunliffe
Ilkley, West Yorkshire

As someone who was told, less than a fortnight ago, that the cancer is back and that, although we may be able to manage it, we are not going to be able to cure it, I read the letters about “good deaths” with perhaps slightly more than normal interest. But I have always known what I wanted, and it is very simple. I wish to be as little trouble to people as I possibly can be.

That reinforces my long-held conviction that it is more than time that this country condoned assisted death. It’s going to be too late for me but what could be more sensible, after the diagnosis I have received, than to live the years that are left and then, in conjunction with the people I love, decide that it is time to end it? Wouldn’t that be a “good death”?
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