Commission on Assisted Dying – Supplementary Evidence by Joel Joffe rebutting concerns of opponents of Assisted Dying
When I gave evidence to the Commission on 20 April 2011, I ran out of time to respond to concerns about the safeguards raised by opponents of Assisted Dying. Baroness Murphy who was chairing the session in the absence of Lord Falconer, invited me to write to the Commission outlining what I had intended to say and I am now responding to that invitation and deal briefly with each of these concerns.
1. A Slippery Slope
If there were no safeguards this could be a risk but the safeguards are there to prevent this risk. The best evidence that there will not be a slippery slope is the experience of countries where Assisted Dying has been lawful. Statistics published by the Oregon Health Department show that after 12 years there has not even been a glimmer of a slippery slope with on average less than 0.2% of annual deaths resulting from Assisted Dying 1. Likewise, in Washington DC, the Netherlands, Belgium and Switzerland there is no evidence whatsoever of such a slope. Opponents of Assisted Dying rely only on speculation and conjecture and are unable to explain why the position should be different in the UK where even more stringent safeguards are proposed than those in Oregon and elsewhere.
2. Palliative Care will be undermined
The evidence in Oregon is that palliative care has flourished since the introduction of lawful Assisted Dying. The number who were enrolled in hospice care increased from 50% in 2003 to 92% in 2010 1. Similarly both in the Netherlands and Belgium, there has been a significant increase in the provision of palliative care since voluntary euthanasia was decriminalised 3.
If palliative care is not available, hopefully the local physicians and palliative care specialists would find assistance elsewhere, if palliative care was what the patient wanted. However, Assisted Dying is based on the patient making an informed decision on all available end-of-life options and if such care is not available, it is not an option, and the patient would make a decision on the options which were available. The non-availability of palliative care could not be a rational reason for denying patients the right to end their lives if Assisted Dying was lawful.
Unlike the safeguards in Oregon and elsewhere the safeguards proposed include a specific requirement for patients to be seen by a palliative care specialist.
3. Duty to Die
The term “duty to die” is something of a misnomer coined by opponents of Assisted Dying. It relates in practice to the concern that some patients may have of being a burden on their families and carers, in some cases coupled with a concern about depleting the resources that their families would inherit on their death.
These concerns are entirely rational and are relevant to a patient in making an informed decision alongside the more common concerns such as loss of personal autonomy, quality of life, suffering and loss of dignity. The Annual Reports of the Oregon Health Department show that in the 12 years of lawful Assisted Dying, 37% patients cited burden as one of their concerns, while 91% cited loss of autonomy, 87% quality of life and 85% loss of dignity. In all cases there were multiple concerns with no instances of burden being the sole concern 1.
The essential requirement in making an informed decision is that the patient should have mental capacity. The law in this regard was summarised by Dame Elizabeth Butler-Sloss, President of the Family Division in Ms B vs An NHS Trust as:
“A mentally competent patient has an absolute right to refuse to consent to medical treatment for any reason, rational or irrational, or for no reason at all, even where that decision may lead to his or her own death.” 2
4. Trust between Doctor and Patient would breakdown
80% of patients are in favour of Assisted Dying and it is difficult to understand why they should lose trust in doctors who were doing what they wanted them to do. However, again, the facts do not support the concern. Doctor’s skills, knowledge and communications with patients had greatly improved both in Oregon, and in the Netherlands 3, and a European-wide study found that patients in the Netherlands had the highest regard and trust for their doctors, with 97% of patients feeling confident in their GPs 4.
5. The Sanctity and Value of Life
The proponents of Assisted Dying naturally respect the right of members of all faith groups to express their views on the issue and to follow their beliefs, and do not seek to impose Assisted Dying on anyone. The faith groups have no right to impose their beliefs on those who do not share them, nor presumably would most of their members wish to do this as the majority are in favour of Assisted Dying 5.
The conflict between the interests of the patient and that of the society in which he lives, was summarised by Lord Donaldson of Lymington MR as follows:
“The patient’s interests consist of his right to self-determination – his right to live his own life how he wishes, even if it will damage his health or lead to his premature death. Society’s interest is in upholding the concept that all human life is sacred and that it should be preserved if at all possible. It is well established that in the ultimate the right of the individual is paramount.” 2
6. Mental Capacity
It is fundamental to an informed decision that the patient must have mental capacity to make that decision. It is for this reason that it is proposed that two independent physicians after examining the patient and the patient’s medical records must have satisfied themselves that the patient does not lack capacity. If either of the physicians has any doubts whatsoever on the issue of mental capacity, the patient must be referred to a consultant psychiatrist.
7. Depression and Mental Capacity
In-depth research by Professor Linda Ganzini and others published in the Journal of Medical Ethics in 2008 found that:
“Most patients who request aid in dying do not have a depressive order. However the current practice of the Act in Oregon may not adequately protect all mentally ill patients, and increased vigilance and systematic examination for depression among patients who may access legalised aid in dying are needed. Tools for screening for depression such as those used in our study are easy to administer and may help to determine which patients need further evaluation by mental health professionals.” 6
The proposed safeguards recognise this and will ensure that where there is any doubt at all in the minds of either of the two physicians, the patient will be referred to a consultant psychiatrist for determination of capacity.
8. Terminal Diagnosis
This safeguard is defined as an illness which in the opinion of both independent physicians is inevitably progressive, cannot be reversed by treatment and will be likely to result in the patient’s death within 6 months. As Lord Walton of Detchant, the eminent neurologist, who is opposed to Assisted Dying, said in his evidence to the 2004 Select Committee, “Clinical evidence never is and never will be an exact science. For that reason I think 6 months, if the Bill did become law, would be a reasonable period of time. I would not wish to shorten it.” 7
The 6 month definition of terminal illness already in the Government’s rules for Disability and Living Allowance and is also recognised in the Department of Health’s End-of-Life care strategy.
Prognosis is not infallible and some patients might live beyond 6 months but the key safeguard is that they will have been advised by the two physicians that there is always a possibility that a prognosis might not be a 100% accurate and that they must take this into account in making their informed decision.
9. Only a small number would take advantage of Assisted Dying
Extrapolating from the Oregon annual average of 20 deaths per 10,000, it is likely that in the order of 1,000 patients would be assisted to die in the UK each year. Relative to the 500,000 people who die, 1,000 is a small number but a caring society cannot just ignore the suffering of 1,000 of its citizens if this can be prevented. Additionally, having the option to die will relieve many patients from the fear of the process of dying, through knowing that should their suffering at the end of their lives increase beyond their control, they will have another end-of-life option to end that suffering.
10. The Disabled are against Assisted Dying
According to the British Social Attitudes Surveys as well as other surveys, a majority of disabled people support Assisted Dying 8.
It is the leaders of many of the disability organisations who oppose it. These leaders do not however represent terminally ill patients but rather patients who are suffering from physical disabilities. It is for the individual patient whether physically disabled or not to decide whether they want assistance to die and it is certainly not for their leaders or doctors to make decisions for them. As was recorded in the judgement of Dame Elizabeth Butler-Sloss in the case of Ms B.:
“The treating clinicians should always have in mind that a seriously physically disabled patient who is mentally competent has the same right to personal autonomy and to make decisions as any other person with mental capacity.” 2
“There is a serious danger, exemplified in this case, of a benevolent paternalism which does not embrace recognition of the personal autonomy of the severely disabled patient.” 2
11. In asking for assistance to die, the patient may not be making a voluntary decision
The safeguard is that both of the independent physicians, after examining the patient’s records and the patient must satisfy themselves that the request is made voluntarily and that the patient has made an informed decision. The only way the patient could traverse this safeguard is by deliberately misleading both physicians.
The best evidence of voluntariness is the safeguard that the patient must self-administer the lethal medication which is a key safeguard.
12. Vulnerable Members of Society would be put at risk
This is understandably a key concern. The rational way of testing the validity of this concern is to examine the actual experience in Oregon where the law allowing Assisted Dying has been in force for 12 years. In all this time there is no credible evidence of any vulnerable patients being unlawfully assisted to die and only one area where the detailed provisions of the law may not have been strictly followed. This in itself is remarkable, bearing in mind that passionate opponents of Assisted Dying in Oregon still watch closely for any such evidence.
That there has been no abuse of vulnerable patients in either Oregon or the Netherlands, is substantiated by the evidence obtained through the indepth research of a team of highly respected researchers, reported by Battin and others in the Journal of Medical Ethics in 2007 9. Their conclusion in relation to the prediction by opponents of Assisted Dying of inevitable and widespread abuse of people in vulnerable groups was:
“Where Assisted Dying is already legal, there is not current evidence that legalised Patient Assisted Suicide or Euthanasia will have disproportionate impact on patients in vulnerable groups.”
In Oregon, the Annual Reports of the Oregon Public Health Division also show no evidence of abuse 1. The research of professor Clive Seale 2009 in the UK concluded that “the results provide little support for the view that the lives of vulnerable elderly people are being devalued, so that the deaths of such people are unduly hastened.” 10
Once Assisted Dying has not led to any credible evidence of abuse of vulnerable people in other countries or regions where it is lawful, it is difficult to follow why, with even more stringent safeguards there is likely to be abuse in the UK.
There is a concern amongst some elderly and vulnerable people about Assisted Dying. This is largely generated by the alarm deliberately created by some opponents of Assisted Dying who raise the spectre of the Holocaust and even the genocide in Rwanda, declaim about doctors killings patients and seek to create the impression that making PAD lawful would enable doctors or others to end their lives without or even against their wishes. In weighing these understandable fears, the test is whether they are justified or whether they are unfounded. Having regard to the proposed legislation where the only person who can make a decision on whether to end their lives are the patients themselves it is clear that these fears are unfounded and should be disregarded.
The opponents of Assisted Dying seek to find gaps in each of the safeguards such as the complexities of prognosis but the safeguards must be looked at as a whole and not individually as each re-enforces the other.
It must however be recognised that no law is infallible. As with all laws including the Suicide Act 1961, the possibility of someone very occasionally slipping through the safeguards, cannot be excluded. This is highly unlikely and could only happen if the two independent and experienced physicians both make the same error of diagnosis or prognosis and/or if the patient deliberately misleads them. The potential harm as a result would be the slightly earlier death of a patient who was suffering unbearably.
The possibility of this occasional exception must be weighed against the certainty of suffering that will be undoubtedly be endured by a significant number of patients, who will be denied the option to be lawfully assisted to end their suffering, by ending their lives in a humane and dignified way.
|1.||Oregon Public Health – Oregon Death with Dignity Act – 2010 Annual Report|
|2.||Ms B vs An NHS Trust – 2002 EWHC (Fax) 429|
|3.||Korte-Verhoef R (2004) European Journal of Palliative Care 11(1). 34-37|
|4.||Kmietovicz Z (2002) R.E.S.P.E.C.T. – why doctors are still getting enough of it BMJ 324 (7328): 11-14|
|5.|| a) British Social Attitudes (2009 -2010) the 26th Report (London) Sage: 87-113
b) Rev Professor Gill – Select Committee on Assisted Dying for the Terminally Ill Bill; HL Paper 86-II – evidence p501, Q1777
|6.||Ganzini L, Goy RE, Dobscha SK (2008) Prevalence of depression and anxiety in patients requesting physician’s aid in dying: cross sectional survey British Medical Journal 337|
|7.||Select Committee on Assisted Dying for the Terminally Ill Bill, HL Paper 86-II; evidence p577; Q2068|
|8.||Clery E, McLean S, Phillips M (2007) Quickening death: the euthanasia debate, in Park A, Curtice J, Thomson K, Phillips M, Johnson M (eds.) British Social Attitudes: the 23rd Report – Perspectives on a changing society London, Sage. Also the previous The British Attitudes Report of 2000|
|9.||Battin MP, van der Heide A, Ganzini L, van der Wal G, Onwuteaka-Philipsen BD (2007) Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in ‘vulnerable’ groups Journal of Medical Ethics 33: 591-597|
|10.||Seale, C., Hastening death in end-of-life care: A survey of doctors. Social Science & Medicine (2009), doi: 10.1016/j.socscimed.2009.09.025|