Deeper water: religion, end of life care and the case for public disclosure.

deeperwater

We don’t ask individual doctors about their religion – it is a personal matter. But religion and medicine are clearly interlinked, and this relationship is most apparent when decisions have to be made near the end of life. At this time religion can influence the expectations of patients and the management decisions of doctors. If a disparity exists between those two parties, and if the fundamental nature of belief does not allow one to accommodate to the other’s preference, conflict can occur.

 

What patients believe is clearly important. The plight of Mr L, a Muslim man with hypoxic brain injury whom doctors did not wish to resuscitate in the event of deterioration, was brought before the Court of Protection in October 2012 by his family. They insisted that, based on his previous respect for Islamic law, he would have wanted every treatment possible that might extend his life. The judge found in favour of the medical team, Mr Justice Moylan saying,

                “It [resuscitation or aggressive organ support] would result in death being characterised by a series of harmful interventions without any realistic prospect of such treatment producing any benefit.”

 

Julian Savulescu (Uehiro Chair in Practical Ethics, University of Oxford), an atheist, has written starkly on the issue of unusual or futile treatment being offered in response to patients’ religious preferences:

                ‘Religion and ethics are different categories of human enquiriy. Religion is as different from ethics as it is from mathematics. Religion is about faith; ethics is about reason. For ethics, religious values are just another set of values, to be treated in the same way as other relevantly similar values. Religion is about what biblical texts, traditions and figureheads say is right and wrong, and what some theists believe is right and wrong. Ethics is about what is right and wrong, about what we have reason to do, what we should do.’

However, my intention in this article is not to explore the infinite variety of belief that informs patient preference. We cannot reasonably expect patients to behave uniformly in matters spiritual, and questions of autonomy should not be invalidated by a religious background. Conversely, there is a school of thought that within a single health service patients should be able to expect consistency from their doctors when it comes to end of life care.

 

The questions that I would like to explore are:

i) Do doctors vary in their practise according to religiosity?

ii) Is such variety acceptable?

iii) If not, should doctors have to disclose their beliefs to patients? This question will lead me to ask, finall

iv) Should doctors disclose their beliefs in public debate on end of life issues?

 

Do doctors vary in their practise according to religiosity?

Clive Seale, now Professor of Sociology at Brunel University, conducted a survey of nearly 4000 doctors who care for dying patients. Having ascertained the type and strength of religious belief, he asked four questions, about the use deep sedation prior to death, attitudes to legalisation of assisted dying, the stated intent to hasten death, and willingness to discuss such decisions with patients. 13.4% described themselves as ‘extremely’ and ‘very’ religious, while 20.7% were ‘extremely’ and ‘very’ un-religious (with a bell curve type distribution in between).

 

Deep sedation was provided by 16.4% of very or extremely religious doctors compared to 22.7 of the strongly non-religious (p=0.03). Differences in intent (32.3 vs 50%), attitude to AD ( anti – 15.5 vs pro – 51.1%) and discussion (64.1 vs 87.9%, p<0.0005 for all) were more emphatic. The headline result, reported in the media, was that non-religious doctors were ‘40% more likely to sedate than religious doctors’ (BBC, Today programme audio excerpt).

The fact that religious doctors appeared less inclined to ‘discuss end-of-life treatment option with their patients’ was also highlighted, leading to conjecture that these individuals were perhaps complacent in their beliefs. A correspondent to the Journal of Medical Ethics, a practising Catholic, provided an intriguing explanation for this rather worrying observation:

                “Perhaps the religious doctors only felt compelled to do so in cases when they felt  the patient’s suffering was particularly intolerable, whereas the threshold may have been slightly lower for non-religious doctors who have a more favourable opinion of treatment options that may shorten life. Thus, in the context of such extreme and apparently intolerable suffering, the doctors providing potentially life-shortening treatment may have felt that it was inappropriate (and even unethical) to delay     treatment in order to engage in a discussion about this treatment option with their patients.”

 

A tendency to shy away from full discussion of treatment options at the end of life was also found by Curlin et al, in a 2007 NEJM paper;

                ‘Physicians who were male, those who were religious, and those who had personal objections to morally controversial clinical practices were less likely to report that doctors must disclose information about or refer patients for medical procedures to which the physician objected on moral grounds (multivariate odds ratios, 0.3 to 0.5).’

The Seale paper was not an isolated event. The Ethicatt study, published by Bulow et al this year, analysed responses by Protestant, Catholic and Jewish medical professionals in 142 intensive care units. It found that,

                ‘religious respondents wanted more treatment and were more in favor of life prolongation, and they were less likely to want active euthanasia than those affiliated’

(‘affiliated’ being nominal members of those religions, but without strong faith). A systematic review of the literature on this question (Mcormack et al, Palliative Medicine 2012) found that,

                ‘degree of religiosity appeared as a statistically significant factor in influencing doctors’ attitudes.’

 

Is this variability acceptable?

Following the press release and subsequent media coverage, a BMA spokesperson said,

                ‘The religious beliefs of doctors should not be allowed influence objective, patient-centred decision-making…’

Was this a criticism of the state of affairs that Seale had revealed? If we assume that the spectrum of patient preference was equally distributed across the variously religious subsets of doctors who responded to the questionnaire, we must conclude that decisions were not being made on purely objective grounds. The preferences (if elicited), and the decisions that were made, were clearly modulated by the beliefs of the doctors.

 

Julian Savulescu wrote the following response to the question ‘Should doctors feel able to practise according to their personal values and beliefs?’,

                ‘Objection by doctors, as is commonly practised, is discriminatory medicine. Only a fully justified and publicly accepted set of objective values results in ethical medicine as a proper public service with agreed and justified moral and legal standard to which doctors should be held.’

 

I have sympathy with this view, but think it is unobtainable, and possibly naïve. ‘Is it right?’ is probably the wrong question to ask. Variability is a fact of life, because all doctors are different and the practise of medicine cannot be completely protocolised. Medicine draws on human qualities from its practitioners, and the advice that each doctor gives is modulated by their own psychological and cultural make-up. We cannot expect or desire uniformity, for that would encourage doctors to perform at a remove from the very internal motivations that brought them to the vocation. That is why my third question, should doctors disclose their beliefs to patients more readily, may have greater relevance.

 

It is not wise to make blatantly religious statements to patients, nor to frame medical advice with religious references. The GMC recently found against a GP, Richard Scott, who, as reported in the Telegraph,

                ‘told the patient he was not going to offer him any medical help, tests or advice and stated if he did not “turn towards Jesus then he would suffer for the rest of his life”.’

The GMC was accused on ‘militant secularism’ by Dr Peter Saunders of the Christian Medical Foundation. A case such as this takes us into rather extreme territory, and dwelling on it will polarise the discussion. Suffice to say, declaring ones religion in the wrong context is foolhardy. But should we expect doctors caring for patients at the end of their lives to mention, early on, that they have faith? To the individual patient such information would only be useful if that faith was definitely allied to a reluctance to prescribe deep sedation, or to take decisions with the intent of shortening life, or to enter into frank discussion. Would a religious doctor really accept that characterisation, or admit to such discinclination? I doubt it. That is the difficulty with large studies – it is almost impossible to know how they apply to the individual! So in answer to my third question I would to say no, it is unrealistic and unfair such face-to-face disclosure.

 

In the public arena however, my conclusion is very different.

 

Should doctors disclose their beliefs in public debate on end of life issues?

The Clive Seale paper is over two years old now, but I think it’s findings, and those of related studies, deserve to be revisited in light of recent debate on the Liverpool Care Pathway (LCP), and in anticipation of Lord Falconer’s upcoming Assisted Dying. Many people, from all walks of life, have been airing strong opinions. In these debates ‘religiosity’ is clearly relevant. Yet, while it is not routine for proponents or opponents to disclose their beliefs when engaging in argument, those who listen to their points will have little insight into the deep seated spiritual leanings that colour their statements. Seale concluded his paper with the comments, ‘Greater acknowledgement of the relationship of doctors’ values with clinical decision making is advocated’. Acknowledgement – that is the word.

 

The recent LCP controversy was sparked by a presentation from Professor Patrick Pullicino, a member of the Medical Ethics Alliance, and was followed by a statement co-signed by a number of religious representatives. These included: Chairman of the Catholic Union of Great Britain, Chairman of the Joint Medico Ethical Committee Catholic Union, President of the Catholic Medical Association, a member of the Catholic Nurses Association, and the Founding Chairman of the Health and Medical Committee, Muslim Council of Britain. Yet these affiliations were not revealed, at least to the casual reader, from the outset.

 

It was only by looking beyond the newspaper reports that one was able to discover that the MEA is essentially an alliance of religious groups. This realisation led me to wonder if their arguments, which at first sight appeared to be based solely on matters of prognostic accuracy and patient safety (very reasonable concerns) were in fact informed by deep seated religious principles – such as ‘sanctity of life’. The perception that life is God’s gift may well conflict with a guideline that instruct the doctor to prescribe sedation which may, unintentionally, shorten a patient’s life. I do not know this, because I do not believe in God, but it must be allowable to make conjectures linking the variations in behaviour revealed by Clive Seale with their possible psychological underpinnings.

 

If religion is driving much of the current argument about end of life care, we must ask ourselves to what extent these preoccupations can be allowed to influence national policy. For if policy is changed (or, more likely in the case of assisted dying, arrested in its evolution), those of us who do not believe in a God deserve to know how the care that we receive towards the end of our earth-bound lives has been shaped by religious belief. It should not be hidden from view, or made visible only to those who search beyond the surface.

 

Atheists must accept that religion is an integral part of life in the United Kingdom. We cannot disregard the historical events that led to the creation of the Church of England and its intimate relation to the state. Atheists must recognise too that much good in modern medicine derives from religion. Dame Cicely Saunders dedicated her life to the development of palliative care following a conversion from agnosticism to Christianity. Her obituary (Guardian, 2005) reads,

                ‘Religion always played a part at St Christopher’s [the hospice she created], though it was never forced on patients or staff: neither were necessarily Christian. The object was always as much secular as religious: to convince patients and their relatives and friends that they were not alone; that, despite their terminal condition, they still had value as human beings…’

 

As a result of the palliative care movement, and the way its associated philosophy has spread into the practise of general medicine, the UK’s reputation for the care of dying patients is unsupassed. The Economist Intelligence Unit found that the UK topped a worldwide ‘good death guide’ in 2010. Points were awarded for life expectancy, hospice availabilty and access to pain killers.

 

I am far more comfortable criticising religion than I am the religious. Who wouldn’t be? All atheists number people with faith among their family, friends and colleagues. In this blog I have tried not to criticise, but to present evidence that belief alters behaviour, informs opinions, and shapes public debate. Debate in turn informs policy, and if those religious individuals and groups who take the initiative in the public arena are to maintain the trust of those who read and reflect on their views, I believe they should disclose their beliefs up-front, and not wait to be asked or discovered.

 

Notes:

References – I have embedded links to relevant references rather than produce a list here

Disclosure: I am an atheist

 

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