Would judicial consent for assisted dying protect vulnerable people?
BMJ 2015; 351 doi: https://doi.org/10.1136/bmj.h4437 (Published 19 August 2015) Cite this as: BMJ 2015;351:h4437All rapid responses
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Leaving aside the question of a proposal to include judicial consent to assisted dying, I am thinking of the position now of Peter Sutcliffe, one of the most notorious multiple murderers in the UK.
After 35 years in a high security psychiatric institution he has been moved to a prison following a tribunal decision considers him to no longer have a mental illness. Peter Sutcliffe has asked for years to be transferred as he can then refuse food and water in order to die. They have along with medications been forcibly given in Broadmoor.
He was initially transferred to Broadmoor after being in prison for three years. He was therefore not considered mentally ill until three years later. Could the experience of being in prison have brought on a condition diagnosed as Paranoid Schizophrenia? Has it taken 35 years to 'recover'? He resisted treatment so what has contributed to the recovery?
Years ago Suffragettes (campaigners for votes for women) were forcibly fed in prison. Has the law changed so that he would be able to refuse food and water in order to die? What would be the obligations of staff in such a situation?
Considering he is in his seventies now and that the experience of being in prison seemed to contribute to the development of a mental illness years ago - is it likely that a mental illness might develop again when of course he is in a more frail condition?
Is he allowed legally to make an Advance Directive and have his wishes enabled?
Competing interests: No competing interests
I expect this legislation, in some for or other, will be passed by Parliament within the next decade.
Though I respect the clearly noble intentions of proponents for a permissive change in the law, and though I could not possibly begin to understand the torment inflicted by various diseases upon the terminally ill, the idea of me, as a medical professional, assisting someone to die is totally unconscionable.
I expect I share this belief with a significant proportion of health professionals in this country.
Competing interests: No competing interests
It seems to me, that for some authors 'coercion' is being used to describe 'persuasion but in a direction I personally do not agree with'. That isn't very useful. Neither is only asking 'was the decision 'autonomous' ?' when [to the person raising the issue of autonomy] it 'seems to be the wrong decision'.
I have pointed out to Rob Marris, that the presence of 'judicial approval' in his Bill, appears at some level to be reversing the assumption of capacity present in the Mental Capacity Act. That would seriously undermine the MCA - and there is incomplete 'acceptance' of the assumption of mental capacity contained in the MCA even as things stand at present.
Competing interests: No competing interests
In Italy, voluntary euthanasia and assisted suicide are criminal offences[1] and are also forbidden by the professional code of conduct and practice followed by both doctors and nurses. There have been two incidents featured heavily in the Italian news media in recent years, both contributing to the reopening the debate on the subject and also, in part, because they seemed to exemplify how, hypothetically, Italy would proceed in cases dealing with euthanasia in the future.
The first concerned a patient with advanced amyotrophic lateral sclerosis (ALS), connected to an automatic respirator by means of a tracheostomy cannula, who had expressed the wish to stop all artificial support and was subsequently helped through the terminal stages by medical personnel who monitored and managed the pain experienced[2].
The second incident featured a patient who had been in a permanent vegetative state for some years as a result of multiple trauma. Her guardian, frequently spoke on her behalf, saying that she had, in the past, expressed her wish that in the event she were to be in a permanent coma, she wanted all nutritional support to be withdrawn. The Court of Cassation (= Court of Appeal) accepted that such expressions of personal choice were both valid and binding if and when a state of permanent coma has been determined and is deemed, by prevailing scientific knowledge, to be irreversible[3] .
The legal framework governing both cases revolved around what one could perhaps define as the “dogma of pure autonomy” – the same issue that, dare one say, featured in a debate that unfolded on the BMJs web pages[4]. It maintains that patients who are terminally ill or on life support are perfectly capable of understanding their situation and making a rational and responsible decision based on their personal life experiences as to whether or not to accept or refuse treatment and that this right should be recognised as a matter of course. Furthermore, no consideration should be given to the not irrelevant aspect of such a situation in which an illness, then finding oneself in a terminal stage of that illness and the resulting severe pain together with an inevitable fragility and vulnerability and an absolute dependence on others, necessarily affects a person’s ability to make a truly independent decision regarding consent or refusal.
To paraphrase Seneca[5]: “ ‘Servi sunt’. - Immo homines -. ‘Servi sunt’. Immo contubernales. ‘Servi sunt’. Immo humiles amici. ‘Servi sunt’. Immo conservi, si cogitaveris tantundem in utrosque licere fortunae”. In other words: “They are slaves!” “No, they are men.” “But they are slaves!” “ No, they are comrades who share our homes.” “But they are still slaves!” No, they are just unpretentious friends.” “But slaves none-the-less!”. “No, not if one believes that all our destinies are subject to the powers that be and the volatility of fate.”
A basic requisite of informed consent is the inference of consent is given “freely”, but where is the freedom of someone who is dependent on others[6]? Where is the freedom of someone who is a slave to illness and suffering?
There is an inevitable, logical conclusion to be drawn, which is that such an expression of freedom is based on having sufficient information on which to make a decision, but that said, can we really be sure that in these situations, that is so?
Something that the highly respected Rosenbaum said[7] recently comes to mind: “The spirit of informed decision making reflects the recognition that only patients are experts on their own values. But our approach assumes a value framework not all patients possess. What if the patient’s preference is to know less?”
It is on that point that the shortfalls of “judicial consent”, as a tool become evident and it cannot, therefore, be considered to be an instrument that safeguards those who are fragile and vulnerable[8] .
Conversely, there is another option, to be considered on a case-by-case basis, and that is that decisions, whilst patient-centric, should be made within the ambit of the doctor-patient relationship and involve the family as well as, perhaps, in consultation with a bioethicist.
References
[1] Art. 579 Italian Criminal Law;
[2] Court in Rome, judgement of 23 July 2007;
[3] Civil Court of Cassation section 1 on 16.10.2007 no. 21748;
[4] Godlee Fiona. Assisted dying – time for a full and fair debate. BMJ, 2015; 351:h4517;
[5] Seneca L A. Epistulae morales. 62; 5:47;
[6] MacIntyre A. Dependent Rational Animals: Why Human Beings Need the Virtues. Open Court ed., 2001;
[7]Rosenbaum L. The Paternalism Preference — Choosing Unshared Decision Making. NEJM, 2015; 373(7): 589-592;
[8] Finlay I. Would judicial consent for assisted dying protect vulnerable people? No. BMJ, 2015; 351:h4437.
Competing interests: No competing interests
Contrary to the sentiments expressed in the Medical Press that the Assisted Dying Bill due to be debated in Parliament on 11 September “will have a profound and detrimental effect on the doctor/patient relationship” it is designed to protect both the vulnerable patient and the doctor. This relationship is always affected when a patient who is terminally ill and experiencing unbearable suffering asks the doctor to take action to help them to die. Doctors are always having to balance the two professional and ethical principles of “do no harm” and “not to officiously strive to keep alive”
In our experience most patients towards the end of their lives willingly accept and appreciate good palliative care but sadly when they are so ill that their sick bodies no longer respond to palliative care and they are experiencing uncontrollable pain, progressive disease and intolerable side effect of medication, this is when they ask for help and have the right to die with dignity.
Medical practitioners and the loved ones of these patients who are asked to help them to die also suffer deeply, feel helplessness, despair and guilt that they are failing that person at the end of their life. When a patient is so ill going to Dignitas in Switzerland is usually not an option for them so this Bill will allow the vulnerable, suffering patient to make the final decision and chose the day and the place to end their life when the time is right for them.
The conscience clause will protect doctors and nurses who have conscientious objections to participating in the process of assessment, verification and prescribing as they are legally exempted, while allowing the patients the comfort of knowing that they do have the legal right to seek the help they want. Far from undermining the relationship it could be seen to strengthen the trust the patient has for their doctor who respects their autonomy, while being able to stand by her/his own ethical principles and at the same time be able to make sound legal clinical decisions and refer the patient appropriately.
Surely “judicial consent would protect vulnerable people”[1] who are the patients, and the doctors as well as other clinicians and loved ones involved with the dying person whose wishes are clear.
1 BMJ 2015. 351:h4437
Rachel Miller. Retired GP
Tricia Pank. RN. RNT. BA (hons) MSc
Competing interests: Both of us have professional and personal experience working with very ill people in the last 6 months of their lives
I am deeply concerned about the proposed Marris-Falconer bill despite the supposed safeguards which are added to these proposals with each iteration. As a practising palliative physician in a large and busy hospital the suffering that I encounter can be alleviated with calm interest and attention to the needs of those who are struggling; open and honest communication; reassurance about what DOESN'T have to happen in the future with well-articulated future care planning; facilitation of pharmacological, psychological and spiritual treatment options. All within the law. Not by prescribing death.
Every patient I ever met who said 'I wish I were dead' conceded after having time to talk and support for relief of their symptoms and anguish that this language was a cry from the heart for help, not a desire for execution.
Amongst the worst misinterpretations of the 'Liverpool Care Pathway' that were reported to me by my acute and specialty colleagues were those where relatives protested 'you're just putting them on this as a government ploy to save money'. What a disaster for the future of doctor/patient/carer relations if the doctor's role were to become provider of death rather than provider of comfort in dying.
I believe we should resist the proposed legislation with every fibre of our vocation to medicine.
Competing interests: No competing interests
I am unconvinced by the arguments that vulnerable people would not be under pressure. I hear frequently elderly patients saying that they feel a burden and other cases where I strongly suspect they are felt to be. As mentioned, elder abuse is frequent and certainly greatly under-reported. I am further concerned that comments about shortage of resources will increase pressures on those with palliative or terminal conditions.
Changes of the law will change expectation of what principles are right and acceptable and make others fear that their doctors may apply to their care, values other than first and foremost to improve their living. This may also skew the attitudes of what is acceptable within some in the profession when dealing with those cases outside the Marris rules. Incremental attitude change could be very difficult to reverse.
As a long standing GP I will be very unhappy if this motion is passed and believe if doctors are involved it will detrimentally affect our relationship with the most vulnerable.
Competing interests: No competing interests
The "safeguards" for the "Assisted Suicide" Bill are completely inadequate, whilst the BMA itself warned MSPs that "there is no way to guarantee the absence of coercion in the context of Assisted Suicide."
In addition, I would like to quote the words of Dr William Toffler, Professor of Family Medicine at Oregon Health and Science University, Portland, Oregon, USA. He wrote in the "Wall Street Journal" of 17/08/2015,
"Since the voters of Oregon narrowly legalised physician-assisted suicide 20 years ago, there has been a profound shift in attitude toward medical care—new fear and secrecy, and a fixation on death. Well over 850 people have taken their lives by ingesting massive overdoses of barbiturates prescribed under the law. Proponents claim the system is working well with no problems. This is not true.
I have seen first-hand how the law has changed the relationship between doctors and patients, some of whom now fear that they are being steered toward assisted suicide.”
He says that Oregon is now using assisted suicide as a means of saving money, with cover for the practice included in medical insurance while important services and medications are omitted.
He asks: "Supporters claim physician-assisted suicide gives patients choice, but what sort of a choice is it when life is expensive but death is free?"
His conclusion is that "Assisted Suicide" has been detrimental to patients, degraded the quality of medical care and compromised the integrity of the medical profession.
Is it likely that the Marris Bill, based on the Oregon experience, will be any different?
Competing interests: No competing interests
Jacky Davis' discussion regarding protection of the vulnerable in assisted dying is clear and cogent. The very detailed data from Oregon over the period of their assisted dying law shows clearly that the vulnerable are under-represented in those who make use of this choice. Mostly, the people helped by the Oregon law are middle-aged, college-educated people with dreadful diagnoses, and tend to have personalities for whom control and autonomy are important. The data are there to see.
Another benefit in Oregon has been that, since the law came in, death is now more often discussed between patients (even those not interested in assisted dying) and their doctors.
Twenty years ago, I contributed to a BMJ paper (1994 308:1332-1334) which showed that many NHS doctors had, in the course of their career, been asked by a patient to hasten death, and that some of those had complied, against the law. Surely a regulated process would be better for both patients and doctors
Competing interests: No competing interests
Re: Would judicial consent for assisted dying protect vulnerable people?
Susanne Stevens has just (25 August) raised an interesting question in this series of rapid responses.
The 'safeguards' in the Marris bill did not protect a mentally-capable person's rights: they effectively constrained the person's right to self-determination in such as way as to take that right away. In particular, a person near the end-of-life would presumably want to be able to chose to end his or her life 'nimbly' as and when the situation became 'too distressing to bear' - the Marris bill required far too much 'advance planning' by such a person, and also when our law currently assumes mental capacity, why did a judge need to 'assess that' ? The safeguards fitted distressed but not terminal patients, and they did not sensibly fit 'end-of-life' patients.
If Peter Sutcliffe is now considered 'mentally normal', then recent court rulings suggest he would be allowed to starve himself to death - or indeed to commit suicide by a faster method - if he were not in prison: at least, court ruling suggest that to be legally the case. I'm not sure if the situation is different for prisoners - I have enough trouble debating the law around end-of-life for people who are not in prison !
Competing interests: No competing interests