My mum wanted assisted dying but we watched her die slowly and in pain
BMJ 2012; 344 doi: https://doi.org/10.1136/bmj.e4007 (Published 13 June 2012) Cite this as: BMJ 2012;344:e4007
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Assisted Dying
I was saddened to read Dr Tess McPherson’s account of the final few weeks of Ann McPherson’s life(1). Palliative care should mean the (virtually) complete relief of pain and distress, allowing the maximum amount of function, and as much interaction with the world (and particularly loved ones) as is possible and desired. It is quite clear sadly that this did not happen in her case at the end; Fiona Godlee was unfortunately wrong when she wrote “...having received optimal palliative care”(2). There are two important lessons here:
1) Tess McPherson stated “now uncontrollable pain and discomfort” and “had become tolerant to morphine”. In the large majority of cases this is just a question of rapidly increasing the dose to whatever is needed to get the desired effect, sometimes also adding other drugs. I personally have given over 1 gram of diamorphine per day (orally) to control severe pain to a man dying of lung cancer with morphine tolerance, and I also recall a man with bone and gut pain with Ca colon that on an emergency night visit I gave IV huge doses of diamorphine + morphine + pethidine (everything I had in my emergency bag). Scary, but he settled into a peaceful sleep with just five respirations/minute. The following day he thanked me for the best night’s sleep he had had for months!
2) In a few cases, sometimes even if the pain is controlled, severe distress persists. In this case it is totally justified to give enough sedation that the patient is very drowsy or even asleep. With my (admittedly limited) experience I always discussed this with the patient, and nearest and dearest. With care one does not burden them directly with the decision, but rather allow a consensus to happen about what is best for the patient. Naturally such action allows anyone to object if they were unhappy about the proposed treatment. I think it is sometimes also reasonable if this terminal phase lasts any significant length of time to allow the patient to wake up after some time to see how the situation might have changed if that is what the consensus wants - but definitely not if the patient does not want this, and I personally have never faced this situation.
Inevitably long term sedation will lead to death either from bronchopneumonia or renal failure due to lack of fluids (but this can take a number of days, which should be explained at the outset). Such action is both morally defensible and legal, relying on the “doctrine of double effect” (3) and the helpful guidelines issued by the Director of Public Prosecutions about assisted dying(4).
Many people are clamouring for a change in the law. I think this is wrong - we should aim to give everyone true optimal terminal care, including where necessary terminal sedation. Such decisions are, and must remain, difficult and each case is individual. We do not need to allow doctors the right of mercy killing which is morally and ethically wrong.
1 McPherson T. My mum wanted assisted dying but we watched her die slowly and in pain BMJ 2012; 344:e4007
2 Goodlee F. Editorial BMJ 2012 344:e4075
3 Aquinas T. Summa Theologica, II.II q.64 a.7
Competing interests: No competing interests
Reading Tess McPherson's account of her mother's death deeply saddened me, not because I agree with her sentiments regarding the need for what she terms 'assisted dying', but because she and her family seem to have been unable to access good quality palliative care at the time they most needed it.
No doubt her GP did his/her best, but was perhaps unaware of the existence of opioid resistant pain (tolerance to morphine does not develop). If one 'morphine drip' wasn't effective, two wouldn't have helped. Likewise, why weren't small doses of midazolam administered to ease her terminal dyspnoea, and spare her, and her family, a difficult death?
Medical killing (I find the term 'assisted dying' unhelpful) for Ann would have been the ultimate breach in the precious relationship between her and her doctors. Without the assessment and support of specialist palliative care practitioners, with their expert knowledge of appropriate drugs and support, Ann and her family felt that the only option was a hastening, rather than a relieving, of the dying process.
Just as midwives assist (without initiating) the process of life coming into this world, so too can doctors (and nurses) support and assist the process of dying, without actually instigating it. It is this we should be advocating, and the language we use should be unambiguous.
Competing interests: No competing interests
Not many BMJ articles leave me with tears in my eyes, but this one did.
As a GP of 23 years standing I am all too familiar with the scenario described so bravely by Anne before her death and now by her daughter- that of a life extending well beyond when it is worth living.
The problem is that allowing a GP or other Doctor to actively shorten life fundamentally alters the relationship between Doctor and patient. I do not wish to be called upon to kill a patient for whom I may have spent decades caring. Many patients do not wish to be a burden and may perceive a pressure , real or imagined, to die quickly and cleanly rather than causing their families work and distress.
The current situation where a Doctor may provide potentially life shortening treatment to a patient as long as their aim is to relieve suffering rather than to shorten life and where the courts generally deal leniently with relatives who have ended the life of a loved one or helped them to end their own life, where it is clear that their motives where pure, is probably the best that we can achieve.
The Dignitas alternative of assisting patients to take their own lives may seem tempting, but in my experience, most patients feel that life is worth living until they are beyond having the ability to end their own lives and they therefore may be encouraged to seek death whilst they are still fit enough to travel and take action themselves and when they may well still have weeks of worthwhile living ahead of them.
Ultimately there is a conflict between the right of a patient to request death and the right of a caring professional not to be asked to kill. Sadly, as often in life, those who are prepared to kill are probably the ones who should not be allowed to do so.
Competing interests: No competing interests
Re: My mum wanted assisted dying but we watched her die slowly and in pain
Dear Sir
I was very disappointed to read this article, when palliative medicine and care had reached so far to make dying people so comfortable and pain free. I wonder whether the editor had any understanding of how the hospice set up works and also about the hospice at home team arrangements for the people who wants to die at home.The aim of the Gold Standard Frame work is to help people die, where ever they want to die, peacefully with good symptom control.It is so sad that this was not achieved.
The answer to this dissatisfaction is not to allow euthanasia. Palliative care multidisciplinary teams address all the existential elements of suffering for people to accept the death and be content of the situation. It is at this point, that the self-value of the person who is dying, and the sanctity of life should be most appreciated.Sometimes it is the family and the people around the person who is dying, are mostly distressed and be hasty to come to conclusions that ending the life is better than living the life of the loved one. Only if this attitude could be changed, by being a little more tolerant of different ways of sufferings of life, we could understand the total pain that human beings going through, in their lives. This understanding is utmost helpful to help people who undergo pain at the time of death. Also we need to remember, sometimes rather than doing things, being there is more helpful and consoling at difficult times.
Competing interests: No competing interests