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The Royal College of Psychiatrists Improving the lives of people with mental illness

Assisted Dying for the terminally ill: the debate continues

 

  • Annabel Price,  Consultant Liaison Psychiatrist, Cambridge
  • Simon Wessely, President RCPsych

On 18 July, after a ten hour debate involving 130 members, the House of Lords allowed Lord Falconer’s Assisted Dying Bill to pass through Second Reading to Committee stage. This means that the Bill will now be scrutinised line by line and amendments proposed before moving to Report stage. This process is likely to happen over the Autumn.

 

The Assisted Dying Bill 2014 is a Bill to enable terminally ill, mentally competent adults to end their own lives by self-administration of a lethal medication with physician assistance. 

 

This is the fifth attempt to pass a Bill in England and Wales allowing physician assisted suicide for the terminally ill, and the second attempt to pass this particular Bill (which was first tabled last year but time did not permit debate). Previous Bills have not passed through second reading so this is the furthest an assisted dying Bill has progressed in England and Wales.

 

The Assisted Suicide (Scotland) Bill is also currently in process though Scottish Parliament having been tabled in November 2013 by the late Margo MacDonald MSP.

 

The Assisted Dying Bill (England and Wales) proposes that a patient requesting assisted suicide would be assessed by two doctors to determine that they a) are terminally ill (have a progressive incurable condition who would not reasonably be expected to live beyond six months) b) have the capacity to make the decision to end their own life and c) have a ‘clear and settled intention to end their own life which has been reached voluntarily, on an informed basis and without coercion or duress’.

 

As with previous Bills in England and Wales, and in line with jurisdictions where assisted suicide is permitted, there is a clause whereby doctors would be able to conscientiously object to involvement in the practice were it not compatible with their own values or beliefs.

 

We are aware that psychiatrists will hold a range of views on the legalisation of assisted suicide for the terminally ill. Indeed, in the August RCPsych eNewsletter members were invited to take part in a vote, albeit a fairly crude one, on this matter - but we can anticipate a polarisation of views, just as was visible in the impressive House of Lords debate on the Bill.

 

Whilst our individual views and consciences will guide our own participation if assisted suicide were legalised, the role of the College is to consider only those issues that are specific to the profession of psychiatry.  So it is reasonable that the College should assist in the on-going debate on matters that are directly fall within our specific expertise.  Individual members are of course free to express their own views in which ever way they chose – be it lobbying their MP, writing to members of the House of Lords, or even for the privileged few, speaking in the Lords itself.  What we set out to do in this blog is make some observations relevant to the debate, from the perspective of psychiatry.

 

We start with some cautions. It seems likely the role of the psychiatrist will if anything be fairly limited. If the experience of jurisdictions where assisted suicide is legal is echoed in England and Wales, psychiatrists will be infrequently consulted for second opinions where mental capacity is in doubt and or there is concern that mental disorder is impacting negatively on the patient or their decision making. This Bill does not make psychiatric assessment mandatory or even recommended in cases where capacity is in doubt, in other words we are not following the Oregon example. But nevertheless, it is likely that there will be occasions when psychiatric assessment will be indicated.

 

The key issues of relevance as we see it relate to the determination of mental capacity, the psychological impact of advanced progressive disease and the phenomenon of response shift, the factors that impact upon on the desire for hastened death in the terminally ill and lastly the stability of desire for hastened death in patients with terminal illness.

 

  • Mental Capacity

In clinical practice psychiatrists are frequently asked to support to colleagues in determination of capacity in physical health settings. The Bill construes mental capacity according to the Mental Capacity Act 2005 and specifies that capacity is assessed at two points during the process, firstly at the time the person is making the request, and secondly at the time they intend to ingest the lethal medication. There is no guidance within the Bill beyond reference to the Mental Capacity Act as to how capacity should be determined, what standard of competence should be reached, or any specific considerations in assessment of capacity for this decision. Variation in concepts of capacity for assisted suicide have previously been identified in experts presenting to the 2010 Commission on Assisted Dying and no further clarity has been given within the wording of the Bill. It only states that the Secretary of State may issue guidance in this area. The recent report of the post-legislative scrutiny of the Mental Capacity Act 2005 showed that the intended principles and provisions of the Act are not always followed in practice and a survey of psychiatrists in Oregon showed that individual values influence individuals’ ideas of how stringent standards of competence should be. In our opinion this suggests that without clear standards of competence and assessment and reporting processes there is a risk that this safeguard will not work as intended. 

 

  • The psychological impact of advanced disease

Diagnosis of potentially life limiting disease and the progression to non-cure focussed care in more advanced disease are often times of great distress which for some will be accompanied by the desire for death and suicidal thoughts.  Few maintain these high levels of distress and those familiar with patients with progressive disease will have witnessed the adaptive processes that can take place even in the face of great physical limitation. Situations that could not prospectively be countenanced can be still result in successful adaption when they do occur, a process known as “response shift”.  An acceptable or even good quality of life can still return even in these situations of severe adversity. Desire for hastened death in terminally ill patients is uncommon and, for the majority transient, and strongly associated with depression and the experience of distressing physical symptoms, and there is evidence to show that antidepressants are effective in the treatment of depression for patients with life limiting disease

 

Experience with patients in other contexts also shows us that suicidal thoughts and intent are often fluctuating and rarely fixed. The determination of a ‘clear and settled intent’ is not straightforward and much may change with time, good symptom management and treatment of remediable depression, even if prognosis is short.  Thus a “one off” assessment over a relatively short period of time may not give a true picture.  

 

  • Conclusion

We believe that the above observations are relevant to the current debate, and hope that these concerns will be heard and reflected on. We will continue the debate at the October meeting of Council, and will continue to keep the membership informed, as well as welcoming comments and feedback.

 

But whether our professional views are listened to or not, the debate will continue. As individuals and citizens we also cannot fail to acknowledge that notwithstanding our appropriate cautions and caveats,  there will still be those who continue to believe that their current circumstances are unendurable and unacceptable.  Each of us will have our views on how we should respond to these situations.  We do not think that the College should take a specific position on this.  Finally, the decision on whether to legalise physician assisted suicide is a matter for Parliament and the Courts. The only position the College takes on this matter at present is that we will always act within the law.

September 2014

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Comments

Re: Assisted Dying for the ter
I welcome this extension of the debate on assisted dying. It is excellent news that the College is willing to enter into discussion on this matter and even better news that, given the division of opinion within our College, the official position of the College is that it is neutral and recognises that the passage of a Bill of this nature is a decision for Parliament. Our College is a model in this respect and I hope others follow its example.

Nevertheless, I was disturbed by one paragraph in this blog. It reads:

Desire for hastened death in terminally ill patients is uncommon and, for the majority transient, and strongly associated with depression and the experience of distressing physical symptoms, and there is evidence to show that antidepressants are effective in the treatment of depression for patients with life limiting disease.

I have neither the authority of the President nor the clinical expertise of Dr. Price. But, now, in my eighty third year, I do have certain other relevant attributes. First, I have reached an age when I have had to observe a number of my close friends suffer terminal illnesses. Second, I am Vice-Chair of Dignity in Dying, the organisation that campaigns for the passage of legislation to enable health professionals to assist mentally competent, terminally ill people to end their own lives. In this capacity I have met a significant number of people who joined the organisation because they had relatives who suffered terribly in their last few weeks or months despite excellent palliative care. Thirdly, I am reasonably well acquainted with the evidence relevant to the statements in the paragraph I have quoted which simply does not support what has been written.

Let me begin by querying the statement that a desire for hastened death is uncommon. A number of studies have suggested that a desire for hastened death among the terminally ill is not at all uncommon, but it is, as the President and Dr. Price say, often transient. It is therefore relevant, and they do not mention this, that the Falconer Bill proposes that ‘only those with a clear and settled intention to end their own life’ should be eligible and that there should be a period of not less than two weeks after a patient is found eligible before lethal medication can be delivered to the patient. The President and Dr. Price then go on to refer to a strong link between a desire for hastened death and depression. They do not mention that in the only paper examining the link between depression and a wish for a hastened death that is relevant because it was carried out in Oregon where legislation is in place on which the Falconer Bill is closely modelled, one quarter of the otherwise eligible terminally ill patients were depressed and thus three quarters were not (Ganzini et al. 2008a). Further the prevalence of depression was estimated using criteria that included symptoms that overlap with those of terminal illness such as fatigue, appetite disturbance and sleep disturbance. It is quite likely therefore to be an over-estimate. As Dr. Hotopf has pointed out this overlap in symptomatology presents major problems for epidemiological research conducted on the basis of questionnaires, only likely to be overcome in interview studies (Hotopf et al. 2002).

It is of course possible that the three quarters of the patients who were not depressed were denying their feelings of depression, and indeed this is what Drs. Hotopf and Dr. Price suggested in their evidence to the Commission on Assisted Dying (2011). There is a Catch-22 trap here. If you admit you are depressed that’s acceptable, but if you don’t you are in denial. To suggest that all or nearly all people who are terminally ill and who wish to hasten their deaths have major depressive disorders seems to me like medicalisation gone mad. This is, of course, not to suggest that terminally ill people may not suffer from serious depressive disorders requiring treatment. Of course they may and this probably small minority needs psychiatric appraisal and treatment. The fact that family members of patients who had died in Oregon after health care professional assistance ranked depression 27th out of 28 in a list of possible reasons why their relatives had requested such assistance (Ganzini et al. 2008b) strongly indicates depression is not common among them.

Incidentally, the paragraph quoted above from the blog written by the President and Dr. Price misleadingly suggests that depression in people with terminal illness recovers well with antidepressant treatment. The most recent evidence (Sharpe et al. 2014) suggests that it is integrated depression care consisting particularly of nurse counselling with use of antidepressants only as appropriate that is effective.

Moving on to recount evidence from those, like myself, whose relatives and friends have died in great distress despite good palliative care, let me give an example from my own experience. I visited a close friend, an eminent solicitor, several times in the weeks and months before his death a couple of years ago. He was a really tough, stoical man, who worked in a senior public office for many years before he retired. Despite excellent palliative care, he suffered several months of distressing and humiliating suffering before he eventually died. A few weeks before he died he said to me ‘Philip, you know I’ve always been sceptical of your involvement with Dignity in Dying but if the option for which you are campaigning was available to me now, that is what I would want for myself. I’ve had enough’. He had, in fact, previously asked his wife if he could be taken to Switzerland but he was too ill. A similar story has been repeated to me by a very significant number of people who have volunteered support for Dignity in Dying. Are the President and Dr Price really suggesting that most of these people are depressed, in denial about their depression and would take a different view of their situation if treated with anti-depressants?

Let me make clear I am in favour of inclusion of relevant guidance in the Code of Practice that would accompany the Falconer Bill. Such guidance would make clear that, in the event of uncertainty by one or both of the independent doctors as to whether a patient had mental capacity, a referral to a consultant psychiatrist should be made. I hope the College will recommend such guidance, recognising that, because such uncertainty is unlikely to be frequent, the role of psychiatry in health care assisted dying will probably be limited.

Philip Graham FRCPsych. (Hon.)

Re: Assisted Dying for the ter
I also welcome this discussion from the president and congratulate him on a clear and representative, nuanced discussion of what is a difficult debate. I agree that the issue of capacity is a thorny one and one which psychiatrists have a lot of expertise in and I therefore encourage the colleges involvement with further debate in this area.

The other major issue is one of diagnosis, which is raised by Philip Graham. The issue of therapeutic nihilism is at stake here. To disentangle the rational suicidal intent from the suicidality associated with a depressive episode is very complex and should not be brushed under the table particularly given the potential severe physical pain and grief associated with a terminal diagnosis. Diminished capacity is often the reason given for treating against the person's wishes those in highly emotional states following overdoses in A&E departments. How much more so could capacity be affected in those patients that are dying and in physical distress.

I would argue that other doctors would not have the expertise to differentiate the rational intent for suicide from that intent which may have arisen from a depressive condition. Logically therefore, this should lead to a full psychiatric evaluation prior to any assisted suicide. This argument however leads to a situation where psychiatrists are put in a very difficult position and one I personally would be uncomfortable participating in.

Evidence has consistently shown that older patients with
significant health problems, if given the necessary and correct
psychiatric treatment, can have a marked improvement in their
outlook and ability to cope.

Laws should be placed in statute to protect the vulnerable and I am concerned that this Act would serve to actually put the most vulnerable in our society at risk and in a dilemma about whether being a burden is now no longer acceptable.
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