Choice and self determination in palliative care. Those in charge of us think they know our “will” better than we do…

There are many misconceptions about death, There is no need to die in pain, and there is no need to be taken from home to hospital or hospice if the preparation is well done. Most of us will have to change our perceptions as without the money, nursing homes  will be unaffordable in the UK. Alternative solutions have to involve families (where possible)  and every tone and city is going to need volunteers if we are to remain a civilised society. Finlay does not represent the people or the doubt views are polarised on this but can ]we not agree to self determination and choice for the individual?

On the 29th February 2018 the Thundered leader was Baroness Finlays opinion that The right to die is not the same as the right to be killed in response to letters of support published 17th Feb.

Assisted dying and the role of palliative care.

ir, Mark Taubert and his colleagues (letter, Feb 14) question whether “legalised assisted suicide” works well elsewhere in the world. The US experience of aid-in-dying, which began in Oregon more than 20 years ago, has been overwhelmingly positive. My experience over the past year and a half of law change in California has been of a law that both empowers and protects physicians and patients alike.

If it were any other way, why would palliative and hospice care organisations in Oregon, Washington and California support aid-in-dying as one of the choices that should be open to patients in their care? Why would the state of Colorado vote two to one to legalise it in 2016, and why would Canada and Australia join in legalising aid-in-dying among other end-of-life options?

Doctors in the UK ought to listen to their own patients, who want this choice for themselves.

Dr Catherine Sonquist Forest
Family medicine physician, San Francisco, and clinical associate professor, Stanford School of Medicine

Sir, Further to the letter from Mark Taubert and other palliative care consultants, those of us who have carefully examined the laws in Oregon and other places see that giving patients access to an assisted death improves honesty and clarity in conversations at the end of life. It also leads to greater uptake of palliative care and offers reassurance for those who want to have choice and control over their suffering in their final days.

It would be beneficial for the debate if those of us who have experience in palliative care would be open and honest about the limits of our abilities to relieve suffering at the end of life. We cannot pretend to be miracle workers and must be humble enough to learn from other countries that have taken the lead.

Richard Scheffer
Retired hospice medical director and consultant in palliative medicine, North Whilborough, Devon

Sir, Just before I retired as a rural GP the invariably helpful Macmillan nurse came to tell me that one of the nurses looking after a terminally ill patient in her home was unhappy to give the dose of diamorphine (heroin) that I had prescribed “because it was a lot”. The said nurse had seemingly not read the clear written statement in the house with respect to the patient’s wishes on her pain. I went to see the patient, who was shouting in pain, and the consultation was broken by a phone call from a doctor from the local hospice whose organisation had no responsibility for either the patient or the nurses. He asked me whether I realised that diamorphine was a strong drug and could depress the patient’s respiration. I had to point out that the screaming in the background was related to an inadequate dose of painkiller.

The problem for many doctors is that their duty of care to patients is trumped by fear of the opinions of others, including palliative care doctors and the General Medical Council.

Michael G Bamber
North Witham, Lincs

Sir, I suspect that those opposing assisted dying may have their views shaken when they are facing death themselves. I am facing a death sentence as a result of a diagnosis of cancer. I find that I don’t mind the thought of death at all, but I do dread what I may be made to suffer unnecessarily at the end.

Anthea Watson
London WC1

THis was followed by correspondence: Scare tactics and the right to die on 19th Feb.

Sir, Baroness Finlay of Llandaff (Thunderer, Feb 19) is right to highlight the illusory “safeguards” of Oregon’s Death with Dignity Act. Such laws are merely a foot in the door. If a “right to die” gives competent “terminally ill” people a right to physician-assisted suicide, why deny those who cannot kill themselves even with assistance and who want a lethal injection; those who face many years of suffering; and those who are suffering but lack the competence to ask for death?

Booth Gardner, the former governor of Washington state who campaigned for its Oregon-style law, admitted it was “a first step”, that gradually “the nation’s resistance will subside, the culture will shift” and more permissive laws would follow.

Parliament, the courts and medical profession have been wise to resist the temptation to take the first step.
Professor John Keown
Kennedy Institute of Ethics, Washington DC

Sir, It is remarkable that Baroness Finlay should accuse those of us who want terminally ill patients to have a choice in the manner and timing of their death of “scaremongering” while suggesting that an assisted dying law would make doctors “agents of death” and would lead to doctors “disposing of the patient”. As for what doctors think about assisted dying, we have no idea as no one has asked us. The opposition of the British Medical Association is the result of the votes of only 198 doctors, hardly a fair basis for Baroness Finlay’s conclusions. The BMA did review its policies on death and dying in 2016 but its remit around assisted dying was very narrow. Indeed, the BMA reaffirmed its position on assisted dying before even debating the contents of the review and only after very narrowly deciding to discuss the issue at all.

We know that more than 80 per cent of the public support legislation for assisted dying; we as a profession should be listening to them.
Dr Jacky Davis
Member, BMA council; chairwoman, Healthcare Professionals for Assisted Dying; board member, Dignity in Dying

Sir, Baroness Finlay is right to be concerned about scare tactics in the campaign for assisted suicide. Some of the worries of my patients and their families flow from being told that life with a terminal illness has to be painful and undignified and that death is inevitably distressing unless its timing is artificially controlled. We cannot legislate to control illness but we can help people to manage it and live with dignity. We do not control the timing of death any more than we control that of birth, but that need not prevent it being peaceful. I have my hands full dealing with fears about death while doing all I can to help people live well. Campaigning is one thing but doing it by stoking those fears does not help.
Dr Idris Baker
Consultant in palliative medicine, Swansea

Sir, Professor Rob George (letter, Feb 19) writes that morphine doses need to be titrated carefully to control a dying person’s pain. He works in a hospice where no doubt the skill to do this is readily available, as it is in a hospital. However, many terminally ill patients die in nursing homes, where doctors are not on hand 24 hours a day and where nurses are understandably wary of increasing morphine levels in case they are held legally responsible for accelerating death. This can lead to unnecessary suffering.
John Sharpe


This entry was posted in A Personal View, Stories in the Media on by .

About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

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