Wednesday, 12 May 2010

Nurses to express their views on end of life issues

Nursing Times has developed an online questionnaire asking nurses about their feelings and experience around assisted suicide. the purpose is to gain a comprehensive picture of how nurses deal with this difficult issue in hospitals, in the community, in hospices and nursing homes. The survey is anonymous and the full results will be reported in an issue of Nursing Times and on soon.

If you are a nurse, please fill in the questionnaire and express your views on this important subject. It is crucial to have all medics on the front line od this difficult subject express their opinions.

Thursday, 6 May 2010

The End of Life Assistance (Scotland) Bill: Views from the trenches. Part 4

This posting is the fourth and final part of the article that Dr Stephen Hutchison MD FRCP(Glasg, Consultant Physician in Palliative Medicine at the Highland Hospice has written on the End of Life Assistance (Scotland) Bill.

The doctor is also responsible for determining at any stage in the process, including during the final act, whether any comment ‘however informal’ by the person indicates a wish to stop the process. How does a doctor qualitatively evaluate statements or questions in this context? For instance, do expressions of hesitation or doubt, or concerns about the family, constitute informal revocation? Can any assurance be given that where hesitation is expressed to someone else that this is passed on to the doctor, rather than suppressed with well meaning or malicious intent? In the context of the decision in hand, how can a doctor determine with the required confidence what would and what would not amount to an informal revocation. So not only is this a vague ‘safeguard’ it actually prejudices the care of anybody going through the process, because it inhibits open dialogue with the doctor which is so important when approaching death.

So, as always, there are two sides to the argument. Although there are some strident campaigners, for the most part those on each side approach the issue with compassion at heart and we should acknowledge that. If you favour this legislation, you have to address its inadequacies. And if you oppose it, you have to recognise that you are left with very difficult questions about personal choice and suffering. Let’s avoid arrogant, polarised, gut reactions. Alienating the opposition makes good journalese but doesn’t encourage informed, intelligent debate. Our politicians are exercised by this issue and public ranting doesn’t help them. They have a free vote when it comes to parliamentary debate. We always tend to think that they have a responsibility to us, but forget our responsibility as constituents to let them know what we think. Why not write to your MSPs and give them some constructive thoughts about this issue?

The End of Life Assistance (Scotland) Bill: Views from the trenches. Part 3

This posting is the third part of the article that Dr Stephen Hutchison MD FRCP(Glasg, Consultant Physician in Palliative Medicine at the Highland Hospice has written on the End of Life Assistance (Scotland) Bill. The article will be posted in 4 parts to facilitate reading.

The House of Lords Select Committee made several recommendations to guide the drafting of legislation about assisted dying. It would have been wise to have accommodated these when drafting the present Bill, but unfortunately they have been largely disregarded. The Bill does not draw a clear distinction between assisted suicide and voluntary euthanasia or set out clearly the actions which a doctor may and may not take in either case. There is no guidance whatsoever on what a doctor may or may not do, or agree to, in bringing about the person’s death. It does not adequately address the need to identify psychological or psychiatric disorders. Whilst the wording regarding prognosis in terminal disease is an improvement on previous legislative attempts, the Bill does not acknowledge the everyday clinical realities of prognostic inaccuracy. It does not focus on unrelievable suffering, but only on intolerability. In making provision only for discussion of palliative care, the Bill does not require patients to experience such care before taking a final decision. And finally it makes no allowance for conscientious opt-out for doctors.
I mentioned safeguards. The Bill requires a staged formal process, with stipulated discussions at each to determine that the person knows exactly what they are asking for, is aware of the alternatives and that they can stop the process at any time. Two psychiatric assessments are required, but it is permissible for both to be conducted by the same person, who is only required to report that the patient is acting voluntarily and with capacity, and not on how appropriate it is to continue with the process. The decision as to whether the process should be carried through rests solely with the designated practitioner. Approval of the second request must be by the same doctor who approves the first. It is a stretch of the imagination to construe this as an independent second opinion! The doctor is expected to ensure, at several points in the whole process, that the patient is not acting under undue influence. There is no indication as to how this should be determined, or of what amounts to undue influence. Is it enough to ask the requesting person? Will that also require a formal statement? The witnesses also have to attest that the requesting person has not come under undue influence. Yet again there is no indication as to how this should be determined. What enquiry are the witnesses required to undertake? How would reliability be assured? What happens where there is a conflict of opinion amongst all these people about the influence? It is impossible to ascertain undue influence, because the influences under which we function are many and varied, internal and external, and can be very subtle. Doctors are used to dealing with uncertainties. Clinical judgments are not always binary – yes or no. But when the outcome is deliberate action to end a human life, the opposite principle to that under which doctors currently work, uncertainty cannot be entertained.

Wednesday, 5 May 2010

The End of Life Assistance (Scotland) Bill: Views from the trenches. Part 2

This posting is the second part of the article that Dr Stephen Hutchison MD FRCP(Glasg, Consultant Physician in Palliative Medicine at the Highland Hospice has written on the End of Life Assistance (Scotland) Bill. The article will be posted in 4 parts to facilitate reading.

Dignity in health care has come to be synonymous with assisted dying. The Voluntary Euthanasia Society is now called Dignity in Dying, and if you go to Zurich to end your life, it is to the Dignitas organisation. All political attempts to legalise assisted dying base their case on dignity. The MacDonald Bill, as you can see, does the same, but doesn’t define dignity, or explain why it should be enhanced by the Bill.

Dignity is a complex social construct, involving honour and esteem, merit, grace, relationship and dependence, who we are and how we behave. There are ways of identifying factors which compromise dignity in health care and good evidence on how to enhance it. Dignity is cheapened by simply equating it to assisted dying. Arguably the MacDonald Bill diminishes dignity in dying because of the requirement to submit to a formal protocol, with numerous consultations, scrutiny of one’s mental health, within a short time frame and without the opportunity to discuss hesitation or distress lest that should be interpreted as a wish to stop the process, all at a time when life is already deemed to be intolerable!
So what about choice and autonomy? Isn’t autonomy a basic human attribute? Dictionary definitions of autonomy include; ‘Freedom to determine one’s own actions; to govern our will by our own principles and laws; to make choices regardless of the influence of, or effect upon others’. Proponents of assisted dying say that we should be free to make our own choices about these deeply personal issues, without having to defer to anybody else. But if we think about it a bit, is there anything we can do or decide, trivial or important, which does not have a potential or actual effect on others? In reality, is autonomy not a limited concept? Maybe it is actually a myth! We are in fact created and designed to be relational and interdependent and our very dignity is intrinsic to that. Choice is something we do have, but we must choose responsibly.

Margo MacDonald’s Bill recognises that people can come under inappropriate influence, and it describes safeguards to prevent this. Scrutiny of the safeguards reveals inadequacies, but that is not the point I want to make here. What I want to say is that when people are seriously ill or incapacitated, they are particularly vulnerable to internal and external influences. The availability of the choice for some to have their lives ended would create a powerful societal influence which would place others – a greater number of people - at risk. Exposure in the course of debilitating and terminal illness to the very influences created by this Bill would increase the risk to a vulnerable majority. One individual insisting on the right to die will affect others. When people say that life and death are individual matters, they are wrong.

What does the Bill propose? To summarise, if it should become law in its present form, it would be legal, under certain circumstances, to assist a requesting person to die, or to help someone else to assist the person to die. It is usually assumed that such a procedure would be carried out by a doctor, but this Bill makes allowance for this to be done by lay people who meet certain eligibility criteria, and provided a doctor is present. The requesting person must be at least 16 years old, with either a terminal illness with a life expectancy of six months or less, or a physical debility which renders them unable to live independently, plus they must find life to be intolerable. The formal procedure includes two independently witnessed written requests by the person, assessments by the doctor to whom the request is made, assessments by psychiatrists, discussion with the doctors about the illness or disability from which the person suffers, feasible alternatives to assisted dying, the means of causing the person’s death, who should do it, where it should be done, and the option to stop the process at any time.

Given that the doctor is the only professional mentioned in the Bill and related documentation, it is reasonable to assume that the doctor will be responsible, not only for clinical assessment and drug administration (assuming that to be the chosen means of ending life), adjudication of the degree of dependence caused by a disability and the level of intolerability of life arising from this or from a terminal illness but also for scrutinising the credentials of the witnesses, and determining that the eligibility criteria of witnesses are met. The Bill is completely silent on the means by which death is to be brought about, as this is left to the supposed expertise of doctors. There is no opt out for doctors who conscientiously object to assisted dying, and referral to a willing colleague is obligatory. It is therefore possible that the requesting person could end up being assessed by a doctor who does not know them, and who would certainly have some difficulty assessing the degree of intolerability, and the level of influence under which the person is acting, let alone the legal ins and outs. And as far as the legal side of things is concerned, it is interesting to reflect on the comments of Julia Cumberlege, former health minister, House of Lords, who said; “The medical profession is there to treat, cure, and care for sick and disabled people. Once lawyers get involved the whole premise changes: bitterness, strife, and serious money take over, families are divided, and suspicion reigns. Doctors should steer clear of assisted suicide—or more accurately of putting people to death—if they want to retain the trust of their patients.” This Bill depends largely on the cooperation of doctors to make it work, but there has been no prior focussed consultation with the medical profession. Moreover there doesn’t seem to have been any thought about the level of competence a doctor would need before providing this service, how doctors will be trained for that, or about personal and professional support for those who are willing to be involved. Nor have similar needs for lay people been considered.

Continued on next posting...

Tuesday, 4 May 2010

The End of Life Assistance (Scotland) Bill: Views from the trenches.Part 1.

We are very fortunate to be able to publish an article that Dr Stephen Hutchison MD FRCP(Glasg, Consultant Physician in Palliative Medicine at the Highland Hospice has written on the End of Life Assistance (Scotland) Bill. The article will be posted in 4 parts to facilitate reading.

Some people because of actual or anticipated physical or existential suffering will wish to end their lives, and sometimes people with serious and incapacitating illnesses do not receive an adequate standard of care. However, it is justified to conclude from this that we need the facility of legalised assisted dying?

Most of us have strong opinions about this. We tend to adopt deeply entrenched positions, shouting from one side about suffering, choice, autonomy and rights, and replying from the other with a sort of “Thus saith the Lord: Thou shalt not kill, and nothing more need be said” approach. Maybe it is difficult to find a middle ground here, and I suppose I am in my trench too, but it is important to appreciate the view from the other trench, so that this complex issue gets more than the knee-jerk response we usually hear. We need to avoid knee jerk responses ourselves – it isn’t just others who are guilty of that.

Most of us hope to avoid severe suffering, and in that event, the option for life to be ended humanely has appeal. Many doctors, including me, facing terminal care situations where treatment is not providing sufficient relief will have been attracted by the idea of being able to gently end life and bringing release. Sometimes the distress of life’s circumstances is beyond anything that a doctor can address. One of the fundamental things about being human is that we have choice. Choice, autonomy and dignity are buzz words nowadays. When presented on the one hand with unbearable pain, loss of control of bodily functions or dependence on others for basic care, and on the other hand to have the option for our lives ended with dignity, the choice seems obvious. How could anyone think that option was wrong? And can we not devise safe legislation to enable the inclusion of this ultimate act of compassion into medical care? These are difficult questions. Glib answers don’t convey much love and compassion, and the sort of right wing intolerant so-called Christian responses I sometimes hear on radio phone-ins are particularly irritating. For goodness sake let us recognise the real challenges around this issue, and Christians in particular should be avoiding un-Christ-like hard hearted responses.
We need to approach this issue compassionately, but also intelligently. One of the problems with public opinion is that people have not been well informed about what exactly such legislation would mean for patient care, and for society generally. The report of the House of Lords Select Committee, set up to comment on Lord Joffe’s recent attempts to introduce assisted dying, contains an extensive section about public opinion. It concludes that the issue of assisted dying is extremely complex, and that the real views of the public are obscured by inadequate information and appreciation of the implications of such law, for themselves and for society. Current public opinion, whilst generally in favour of assisted dying, is largely superficial and does not have sufficient rigour or quality to guide legislative change.

The policy Memorandum accompanying Margo MacDonald’s Bill mentions several distressing instances of suffering. They certainly should distress us. However, it is a matter of fact that people usually think they would like assisted dying to be available just in case they get severe pain, or other symptoms, in a terminal illness, rather than the actual experience of these. In other words it is fear of pain rather than actual pain which underlies the request. People experiencing terminal illness have a similar spread of opinion as the wider public. Of those who do express the wish for their lives to be ended, many have depression. Anecdotally, others change their minds once they have received good palliative care. So when I read about pain, distress and suffering in the Policy Memorandum, I wish I had more information about the level of care these patients received, and if it wasn’t good enough, I want to know why – because in the UK we have a magnificent standard of palliative care and that should have been available. We also need to be a bit careful about the assertions in the documentation that assisted dying goes on under cover anyway and it would be better to legalise and regulate it, and also that is compatible with palliative care. There is good evidence that doctors in the UK rarely engage in such practices, and if we look at the definitions of palliative care as well as the experience of palliative care practice in societies where assisted dying is legal, the claim that the two are compatible becomes less than convincing. The debate on assisted dying will inevitably be passionate, on both sides, but we need to be careful how we interpret evocative anecdotes about suffering, and not take everything at face value. We need to subject the information we are fed to careful scrutiny if we want to develop an intelligent opinion about this.

Margo MacDonald’s Bill declares its purpose as the “provision or administration of appropriate means to enable a person to die with dignity and a minimum of distress”. The wording sounds wholesome, and implies that the Bill makes provision for this. But provision for that is already made in health care, and palliative care in particular is directed to precisely these objectives. Opponents often say that we should call a spade a spade – this is killing and we should use that word. That may be true but it sort of implies a callous or murderous attitude, and whilst one of the undoubted dangers of such legislation is the potential for malicious motivation, compassion for the requesting person is likely to be the predominant influence. Maybe it would be more honest, to describe the purpose of the Bill as the legalisation of intentional ending of life.

.... Continued on next posting.