Talk to UK Forum on End of Life Care

Dignity in Dying’s acting Chair, Dr Philip Graham, spoke to UK Forum on End-of-Life Care on 3 December 2015. His speech: 

I’ve not addressed an audience of health professionals working in end of life care before. I would like to begin with genuine warm thanks for the wonderful work that you do. I lived in the same house with the same neighbours for over 40 years. Recently both the man next door and the man next door to him have died, the latter in the last few weeks. Both men were close friends as well as neighbours. One had a cancer of the mouth and the other supranuclear bulbar palsy. Both had a really terrible quality of life in their last few months.  Both received just brilliant palliative care. I know that the level of care they received is being provided in many parts of the country. So first, thank you and I really do mean thank you to you and your colleagues for that.

British palliative care has a great reputation. As you know, it was recently ranked top among eighty countries for its end of life care by the Economist Intelligence Unit. So let me congratulate you on this achievement though I shall return to that Report later on.

Let me move on to consider the implications of the result of the recent House of Commons debate. A proposed law giving terminally ill, mentally competent adults the right to health professional assistance to end their own lives was comprehensively defeated by 330 votes to 118 in the House of Commons about three months ago.  This result was particularly notable in the light of the overwhelming public support for the Bill. Around 80% and rising, with only slightly less among those with religious faith and slightly more support amongst disabled people.

Even when provided with negative information of doubtful validity, support remains high. The public would like to see this Bill enacted.

But the great success of the opposition was not only impressive because of the high level of public support. It was achieved in the face of the overwhelming evidence in favour of the feasibility and low risk of the proposed Bill. This was closely modelled but with even greater safeguards on that which has been in operation in Oregon for 18 years. And similar legislation to that enjoyed by citizens of Oregon is now benefiting around 50 million people in total in the United States. There is every indication most of Canada will shortly follow suit.

How was the opposition made up? First, religious leaders. The Heads of the Anglican and Catholic churches, the Chief Rabbi, prominent Muslim and Hindu leaders, in all 20 British faith leaders signed a statement opposing the Bill. Second, other bodies such as Care Not Killing, led by men and women motivated by their faith to preserve the sanctity of life. Third, leading medical organisations, particularly the BMA and the Royal Colleges of Physicians, Surgeons and General Practitioners. A powerful combination indeed!

How was it done?

First, by the generation of irrational fear. Fear of inaccurate prognosis, fear of coercion by greedy relatives, fear of loss of the trust between patient and doctors. You do not need to be a psychiatrist, as I happen to be, to know that fear is a very powerful motivating force. Further, irrational fear, as the evidence strongly suggests this was, is more powerful than rational fear. Reasoned argument cannot remove it. Now MPs are particularly risk-averse. Any suggestion they might get caught out is enough to get them running to the air raid shelters as fast as their legs will carry them. The fear they experienced was irrational because of the overwhelming evidence that the safeguards proposed in the Bill have been well tried over a number of years elsewhere. In the present situation the last few months of life are far more unsafe than would be the case if the Bill had been passed. But evidence is not what MPs want. I have noticed in the past, in relation to other issues, just how MPs hate, but really hate evidence. Evidence prevents them from using those ‘natural’ gut instincts on which they much prefer to base their opinions.

Then there was the recounting of heart-rending anecdotes. On my count there were 17 of these told by 15 opposing MPs (Edward Leigh and Nadine Dorries told two). Some of these were sad, some tragic, some inspiring. But they all had one particular characteristic in common. They had no relevance to the law that was being proposed or, if they did, their relevance was not made clear. Edward Leigh, for example, told of a friend who was a Catholic priest who chose not to have treatment for renal failure but to endure suffering, as well as another friend who died of a morphine overdose. Sarah Wollaston told a story of a woman who went to Switzerland because she was frightened of getting old and Philippa Whitford another of a young woman who died a beautiful death in an hour

Let me tell you my own anecdote. A close friend, a distinguished lawyer, died about three and a half years ago. Despite excellent palliative care he had what he felt to be a painful, humiliating last few months of life. A few weeks before he died I visited him, as I often did. He said ‘Philip, you know I’ve always been negative about your involvement in the campaign for assisted dying. Well, if that were available to me now that is what I would want for myself’. Now I call that a relevant anecdote.

Then the opposition managed to convey (and this really was a master stroke) that those supporting the Bill were opposed to palliative care.

Sir David Amess, MP, said perhaps in a manner more illuminating than he intended:

All members have been pressured by hospices in their own area and I believe the House should concentrate on the delivery of good quality palliative care … I urge the House to reject this Bill

Caroline Spelman, MP, said:

There is a significant risk that passing this Bill would reduce the available resources. The Deputy Chair of Hospices UK has suggested that such a change could threaten funding for hospices

It is plainly obvious that this issue cannot be framed by suggesting that improvements in palliative care and legalisation for assisted dying are alternatives; both are badly needed.

A number of speakers in both the recent House of Commons and House of Lords debates referred to end of life care in this country as ‘patchy’. That is a misleading euphemism. As the 2015 Report of the Health Care Ombudsman titled ‘Dying Without Dignity’ revealed, it is frequently frankly appalling. As her Report makes clear, it is not at all uncommon for people in their last weeks or months of life to suffer from poor symptom control and poor communication as well as other deficiencies in care. The conclusions in her Report are supported by data from the national bereavement survey, VOICES, which reveal that around 10% of bereaved people think that the overall quality of the care of their dying relatives was ‘poor’. Further, we should not accept without considerable scepticism the EIU ranking putting Britain top in quality of end of life care. The league table was arrived at without interviewing a single patient or carer. About 3% of a country’s score is based on whether patient satisfaction scales are used but there is no weight at all given to the level of patient or carer satisfaction. It is as if the Premier League football teams were ranked on the price of their players and the experience of their managers without a single game being played. Let me make it clear that personally if I spoke the language and had friends and family there my own preference would be to spend my last months or weeks in Holland or in one of the Scandinavian countries where I have worked.

Various suggestions have been made to remedy this regrettable situation. Baroness Finlay, in her Access to Palliative Care Bill introduced in the House of Lords a few weeks ago, proposed better education of all doctors and nurses involved in the care of the dying and I strongly support her in this. Health professionals need to communicate about difficult issues, a skill too few possess at the present time.

In the House of Commons debate the opposition managed to convey that the proposed law would actually pose a threat to the vulnerable whereas in fact the very reverse is the case. The position of the vulnerable would actually be strengthened if such a law were passed. It would give the terminally ill among them a voice now currently denied to them. I’m a child psychiatrist. I worked mostly at Great Ormond Street where the high mortality meant I was very familiar with death. Mostly though, I spent my working life assessing, treating, protecting and advocating for the most vulnerable individuals in our society – children, depressed, anxious, angry. Children without a voice. I once wrote a book titled ‘So Young, So Sad, So Listen’. So listen, so listen … Giving the vulnerable a voice, a voice of their own, which is just what this Bill would have done, is the best way to ensure those who care for them do not take advantage of them.

If this really were the principle underlying health care the situation of the vulnerable would be transformed for the better. If health professionals listen then they would have to respect the choices the vulnerable made for themselves, not from a checklist of possibilities provided by us, but from their own, sometimes unpredictable wishes and desires. Much was made in the recent House of Lords debate of the wonders of providing a bowl of hot porridge for a terminally ill patient who wanted it. Porridge would probably not have been on a list of choices put forward by health professionals. It was a terminally ill patient’s choice. We should take seriously the 2014 Report of the Leadership Alliance for the Care of Dying People which proposed as a criterion of good care ‘The dying person, and those identified as important to them, should be involved in decisions about treatment and care to the extent that the dying person wants’.

Now there is not much point in asking a dying patient what he or she wants if what he or she wants is illegal. This inevitably brings me back to assisted dying. If anyone here or anywhere else thinks that the House of Commons vote will make the issue go away they have another think coming. The force of public opinion, the accumulating evidence and, above all, the wishes of the terminally ill themselves will make it happen at some point in the not too distant future.

It is not sustainable to ignore the failings of the current law. It is notable that the liberalising wings of all three so-called Abrahamic religions are gaining ground. We see it in modernising tendencies in the Catholic and Anglican churches, in the development of reform and liberal Judaism and in moderate Islam. In all of these there is a rejection of the homophobic, misogynistic and, above all, patriarchal attitudes of the past. Similarly in medical organisations one can see a gradual movement towards making patient choice a central plank of all aspects of health care. The debate cannot be framed in terms of improving palliative care versus the legalisation of assisted dying. Both of these can and should happen. And indeed if assisted dying were legalised the evidence from Oregon and elsewhere would suggest that other aspects of palliative care, especially improved communication, would ensue.

I’m 83 years old. It is becoming increasingly unlikely that I shall enter the terminal phase of my life with the possibility of a health professional assisted death legally available to me in this country. If I’m suffering in a way excellent palliative care cannot, to my mind, sufficiently help, as was the case with my two neighbours, I shall have to go to Switzerland. Fortunately I can afford it. But I’m not going yet ….