Assisted Death: a person with Parkinson's perspective
Assisted Death: a person with Parkinson's perspective
by Sir Nicholas Mostyn, a judge of the High Court and of the Court of Protection 2010 - 2023
On 24 March 2021, in Madrid, King Felipe VI signed La Ley Orgánica 3/2021, de 24 de marzo, de regulación de la eutanasia[1].
Its preamble states:
“This Law introduces a new individual right into our legal system, namely euthanasia. This is to be understood as the action that results in the death of a person directly and intentionally through a unique and immediate cause-and-effect relationship, at the informed, express and repeated request of that person, which is carried out either in the context of suffering due to an incurable disease or to an unacceptably experienced condition which has not been mitigated by other means”
Articles 3 and 5 give alternative qualifying conditions for seeking an assisted death[2]. The first is that the person seeking assistance (“P”[3]) must be suffering from a “serious and incurable disease” which is defined as “one which, by its nature, causes constant and unbearable physical or mental suffering without the possibility of relief that the person considers tolerable, with a limited prognosis of life, in the context of progressive frailty.”
The alternative is that P is suffering from a “serious, chronic and disabling condition” which is defined as
“a situation giving rise to limitations having a direct impact on physical autonomy and the activities of daily living, in such a way that it does not allow such persons to manage for themselves, including the ability to express themselves and to relate to others, and which are associated with constant and intolerable physical or mental suffering for the sufferer, where there is certainty or great probability that such limitations will persist over time without the possibility of cure or appreciable improvement.”
Since the introduction of the Spanish law there have been hundreds of cases of assisted death pursuant to its terms. As far as I am aware, these have taken place without a chorus of accusations that weak and vulnerable people have been coerced to do so; or of allegations that the relationships between patients and doctors have been compromised; or of denunciations that Spain has fallen into a moral void by failing to respect the sanctity of human life. The 2022 Annual Evaluation Report on the Provision of Assistance in Dying published in December 2023 by the Ministry of Health makes no reference to any concerns of this nature.
Similarly, in the Netherlands the Euthanasia law has been in force since 1 April 2002. This requires both the treating physician and an independent physician to be satisfied that P’s request is voluntary and well considered; that the patient’s suffering is unbearable, with no prospect of improvement; and that there is no reasonable alternative for the patient. Over 60,000 people have taken this path. I have been unable to find any solid evidence that any of those deaths was the subject of indirect social pressure, let alone direct coercion.
In the Movers and Shakers podcast on Assisted Dying released on 19 October 2024 Gillian Lacey-Sollymar observed that the definition of the alternative Spanish condition described exactly the likely end-of-life experience for people with Parkinson’s Disease. For us, the condition will never improve and will only get worse. We will likely lose speech, mobility and continence and be beset by excruciating pain - but no doctor will ever give us a terminal diagnosis.
10 years ago, well before I was diagnosed with Parkinson’s disease, I said in a judgment (Nottinghamshire Healthcare NHS Trust v RC [2014] EWCOP 1317) :
“The Hippocratic duty to seek to save life, or the benign but paternalistic view that it is in someone's best interests to remain alive must surely be subservient to the right to sovereignty over your own body.”
That was my judicial view then, and it is my very strong personal view now that I have been diagnosed with this nasty, malevolent condition.
When I was interviewed by Fergus Walsh for the BBC on 31 October 2024, I was asked what question I would pose to the campaigners who oppose the introduction of a limited law allowing assisted death. This was it:
What are your reasons for expecting me to suffer, in the advanced stages of Parkinson’s disease, constant intolerable pain and other indignities before a prolonged and unpleasant death?
I am confident that the doctrines of Christianity will underpin the answer.
I was brought up a Catholic and from a very early age was immersed in the worship of death and suffering which is a doctrine of that denomination.
At the heart of my Catholic indoctrination was this curious paradox: life was sacred save where it was agonisingly sacrificed in favour of the faith - ad favorem fidei. Therefore, martyrdom apart, suicide (or self-murder as it was often known) was and remains a mortal sin. The common law followed the theology. Back in the day, the corpse of a suicide, like the corpse of an executed criminal, could not be buried in consecrated ground. His estate was forfeit to the crown. The actual act of suicide was a common law crime until 1961, resulting in people being sent to prison in my lifetime for attempting it. The state’s principal hangman from 1901 to1923, John Ellis, was so traumatised by the hanging of Edith Thomson in 1923 that in 1924 he attempted to take his own life. He was unsuccessful and was prosecuted, found guilty but spared prison. In 1932 he succeeded in killing himself. This must be one of the strangest stories in the canon of the law. The 203 killings performed by Ellis on behalf of the state were all entirely lawful, but his attempt to kill himself was unlawful, as was his successful later attempt.
Naturally, I do not dispute the right of individuals to practise religious beliefs. This is enshrined in Article 9 of the European Convention on Human Rights. However, like it or not, we live in a secular society where it is, in my opinion, completely unacceptable for religious believers to seek to impose their dogmas on the community at large.
Personally, I strongly repudiate the argument advanced by religious objectors that “suffering is a necessary part of life”. With the advancement of medical science, pain can normally be managed. Unfortunately, there are some conditions which are unresponsive to pain relief, with endings which are the stuff of nightmares. A graphic example is given by the character Roland describing his friend Daphne’s ghastly death in Ian McEwan’s 2023 novel “Lessons” at pp 422-423.
“He couldn’t help his disobedient thoughts. They tended towards her agony and the agony of the children when they came to see her. She shrank in the bed, her face grew tight around her skull, her teeth protruded so that they all struggled to see the face they knew behind a new mask. Her skin burned. She hated sleeping so much, the morphine dozes, the dreams - frightening, she said, because they were as vivid as life and she fought to escape them. Her tongue was covered in white sores, her bones, she said, were on fire. The rending pain in her side was as she had dreaded and worse. The choice was between the pain or the morphine and the suffocating dreams that disguised themselves as reality, though the consultant insisted that patients on morphine had dreamless sleep. When Roland asked Daphne if she wanted to come home, she looked frightened. She said she felt safer where she was. For the same reason she wouldn't be moved to a hospice. Soon the drugs did nothing for her pain and she longed to die. Here was the humiliation she had always feared, but pain rendered her insensible to it. He heard her beg a doctor in a small voice to release her. She tried it with the nurses, who were now her friends, to allow her an overdose that no one would know about. But the staff, kindly as always, were bound by law to their medical duty to keep her alive in pain until she dropped. They were prepared to kill her by omission, by denying her food and drink. Intense and unremitting thirst was added to her ordeal. Roland moistened her lips with a wet sponge. Her lips were cracked as though she had crawled across a desert. Her eyes were yellow. Her breath smelled of something rotting. He took the 'nil by mouth' sign off the foot of her bed and went to the nurse's station to insist that she be given water whenever she asked for it. They shrugged OK, that was fine by them.”
I have no intention of suffering like that, or of inflicting anything like that on my nearest and dearest. If they had to endure that, it would not be an “incredible privilege” nor would they “grow in love and virtue” (as I have heard caring for a dying person described). Instead, they would be fixed with an indelible memory of the horror of my passing, likely supplanting so many positive memories of happy times before Parkinson’s decided to place me on my own (secular) Calvary.
No. When the disease takes its final brutal hold of me, I will obtain an assisted, dignified death at a time of my choosing in the presence of my loved ones. If I cannot get one here because Parliament has refused to pass the necessary law, I will take myself to Zurich.
I revert to my question to the objectors. I expect that the answer I would get would be the same as that given by the High Court and the Court of Appeal in the case of Noel Conway v Secretary of State for Justice (2017). In that case Mr Conway, who suffered from a form of Motor Neurone Disease, and who faced a dreadful end, applied to the High Court for a declaration pursuant to the Human Rights Act 1998 that the prohibition on assisting a suicide in s.2 of the Suicide Act 1961 was incompatible with his right to respect for his private life guaranteed by Article 8 of the European Convention on Human Rights. Surprisingly, in those decisions the judges did not confine themselves to the legal question whether that prohibition fell within the wide discretionary band (the “margin of appreciation”) which all the Convention states have when enacting social legislation (in particular) and with which the Court will not interfere. Instead, they descended into the weeds of the moral arguments for and against a law for assisted death and emerged as outright objectors. I completely disagree with their decisions. In my respectful opinion they should have confined themselves strictly to the legal issues.
The judges said that it was a good thing for the law to continue to prohibit assisted death for three reasons namely to protect a vague class of “weak and vulnerable people”; to promote respect for the sanctity of human life; and to promote trust between doctors and patients.
In the Court of Appeal’s decision, the judges cite a description of the arguments for and against assisted dying given by Lord Steyn in Diane Pretty’s case in 2001:
"The subject of euthanasia and assisted suicide have been deeply controversial long before the adoption of the Universal Declaration of Human Rights in 1948, which was followed two years later by the European Convention on Human Rights and Freedoms (1950). The arguments and counter arguments have ranged widely. There is a conviction that human life is sacred and that the corollary is that euthanasia and assisted suicide are always wrong. This view is supported by the Roman Catholic Church, Islam and other religions. There is also a secular view, shared sometimes by atheists and agnostics, that human life is sacred. On the other side, there are many millions who do not hold these beliefs. For many the personal autonomy of individuals is predominant. They would argue that it is the moral right of individuals to have a say over the time and manner of their death.
On the other hand, there are utilitarian arguments to the contrary effect. The terminally ill and those suffering great pain from incurable illnesses are often vulnerable. And not all families, whose interests are at stake, are wholly unselfish and loving. There is a risk that assisted suicide may be abused in the sense that such people may be persuaded that they want to die or that they ought to want to die. Another strand is that, when one knows the genuine wish of a terminally ill patient to die, they should not be forced against their will to endure a life they no longer wish to endure. Such views are countered by those who say it is a slippery slope or the thin end of the wedge. It is also argued that euthanasia and assisted suicide, under medical supervision, will undermine the trust between doctors and patients. It is said that protective safeguards are unworkable. The countervailing contentions of moral philosophers, medical experts and ordinary people are endless. The literature is vast: … It is not for us, in this case, to express a view on these arguments. But it is of great importance to note that these are ancient questions on which millions in the past have taken diametrically opposite views and still do."
This correctly sets out the arguments for and against an assisted death law. But up to now, these “ancient questions” have always been decided against autonomy and in favour of prohibition. I hope to show in this piece that the time has come to acknowledge the supremacy of the principle of autonomy and to demonstrate that the arguments in favour of prohibition have little or no objective validity in a modern secular society.
The arguments against autonomy and in favour of continued prohibition are:
The existing prohibition protects the weak and the vulnerable.
A new law allowing an assisted death would compromise relationships between doctors and patients.
A new law would not give proper respect to the sanctity of human life.
To these Rajiv Shah has added two objections in his recent article in the Critic Magazine “The costs of assisted suicide”. First, he says that having such a system would “change the default for those who do not want assisted suicide. Instead of living and fighting until their natural death automatically, this would now become a choice that they have made”, and this is a bad thing. Second, he says that confining the right to seek an assisted death to those who only have 6 months to live carries with it the message that the state does not believe that such people have a life worth living for their final few months, and that this is also a bad thing.
Before I address the arguments for and against autonomy, I want to make a few preliminary points which seem to have been lost in the heat of the controversy.
The first is that Article 2 of the European Convention on Human Rights does not act to prohibit a law that would allow an assisted death. Article 2 states that “Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally.”
Obviously, this has nothing to do with death with the consent of the subject. To deprive someone of something means to dispossess that person of that thing. Dispossession is not a consensual process. The European Court of Human Rights in Strasbourg in the case of Diane Pretty (2002) rejected a frankly hopeless argument that Article 2 should be construed as giving a right to an assisted death. But nothing the court said could be interpreted as saying that Article 2 prohibited a state from enacting an assisted death law. On the contrary, the Court in that case said, as did the House of Lords in the case of Tony Nicklinson (2015), that while the criminalisation of assisted death by s. 2 of the Suicide Act 1961 constituted an interference with P’s right to respect for private life as guaranteed under Article 8(1) of the Convention, it was nonetheless within this country’s “margin of appreciation”. None of this would have made any sense if the claims in those cases were impossible anyway because Article 2 acted to prohibit an assisted death law. The Dutch Euthanasia Law came into effect on 1 April 2002. The decision in Diane Pretty’s case was on 29 July 2002 and said nothing about it. The Strasbourg Court has never since suggested that the assisted death laws of Holland, Belgium, Luxembourg, Switzerland and Spain are in violation of Article 2. Nor has it suggested that the power of the Court of Protection (as regards mentally incapacitated adults) or the High Court (as regards children) to make an order authorising the withdrawal of life-sustaining treatment violates Article 2. Indeed in the Charlie Gard case (2017) it dismissed such an argument as “manifestly ill-founded”.
The next preliminary point is that we already have two forms of tolerated assisted death in this country[4]. The first derives from s 2(4) of the Suicide Act 1961.
Section 2(1) of the Act made it a serious offence for someone to assist a suicide. So, the law embodies this strange, unique contradiction: it is an offence to aid and abet something that is not an offence.
Sec 2(4) provides that any prosecution for such an offence requires the consent of the DPP.
The DPP’s Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide (2014) lists the factors for and against prosecution. A prominent factor against prosecution is where the deceased had reached a voluntary, clear, settled and informed decision to commit suicide, and the helper was “wholly motivated by compassion”. Thus, a prosecution is very unlikely to ensue where a friend or family member takes compassionate steps to help relieve a subject’s unbearable suffering.
We therefore already have a non-statutory permitted assisted dying policy, albeit formulated by an unelected official and only operating in the sphere of criminal law. That policy tolerates assistance being given to a suicide by someone who is not a health care professional where the motive of the helper is purely compassionate; is in accordance with the subject’s wishes; and is aimed to relieve the subject’s unbearable suffering. But to do so is replete with risk. If assistance is given neither the subject nor the helper will know in advance if a prosecution will ensue. The helper must wait on tenterhooks for a prolonged period before the DPP’s decision becomes known. However, the High Court pointed out in the Noel Conway case that between 2008 and 2016 there were about 200 cases referred to the DPP and just 2 prosecutions. The High Court said:
“…although we recognise that a retrospective examination of events in the context of the DPP's policy will always be more traumatic and difficult, the possibility of prosecution is not a high risk.”
That said, it is wholly undesirable for home-made assisted deaths to be attempted, and so the presently tolerated assistance is realistically confined to those who can afford to pay for the services of Dignitas in Zurich. To be sure that there will be no prosecution of a helper the subject has to have the means to go to Dignitas; must solely make the booking and pay for it; and ideally must get out of the UK unaided before meeting up with the helper.
But be in no doubt, the existing informal toleration has now reached a state of institutionalised formality. In the recent High Court case of Morris v Morris Mr Philip Morris had helped his terminally ill wife Myra, who was suffering unbearably from an incurable, rare and degenerative neurological disorder known as multiple system atrophy, to receive an assisted death in Switzerland. Mrs Morris was constantly in extreme pain, but there was no diagnosis of imminent death. Mr Morris had therefore committed the offence of assisting a suicide. Mr Justice Trower decided to lift the ancient forfeiture rule that stopped Mr Morris receiving a bequest under Mrs Morris’s will. He was completely satisfied that Mrs Morris was suffering unbearably; that Mr Morris was motivated solely by a compassionate desire to respect his wife’s wishes to bring her suffering to an end; and that no prosecution would ensue. In effect, Mr Justice Trower issued a declaration that Mrs Morris’s assisted death was lawful, or at least not unlawful.
The state’s informal non-statutory toleration of assisted death for those who can get to Dignitas surely sells the pass so far as the objections listed above are concerned. Indeed, as Lord Neuberger pointed out in the Nicklinson case, the weak and vulnerable would be better protected from social pressure if assisted death were enacted than if the current law were left in place. He said
“… A system whereby a judge or other independent assessor is satisfied in advance that someone has a voluntary, clear, settled, and informed wish to die and for his suicide then to be organised in an open and professional way, would provide greater and more satisfactory protection for the weak and vulnerable, than a system which involves a lawyer from the DPP's office enquiring, after the event, whether the person who had killed himself had such a wish, and also to investigate the actions and motives of any assistant, who would, by definition, be emotionally involved and scarcely able to take, or even to have taken, an objective view.”
In circumstances where the state already tolerates this form of assisted death, to the extent of the High Court declaring a particular assisted death to be not unlawful, I would suggest all arguments about the need of the state overtly to proclaim the sanctity of human life are lost, as are Mr Shah’s two add-ons. Equally, it is hard to see why the relationship between patient and doctor would be greater affected if the death were achieved under the proposed new regime than under the existing means.
Make no mistake. Campaigners against assisted death want the existing law, and its accompanying policy of the DPP to remain intact. They are not arguing to change one word of the existing law or the accompanying policy.
The second form of tolerated assisted dying is that the law explicitly allows passive assisted dying, in the sense that we can lawfully refuse medical treatment with the intention of bringing about our deaths.
In NHS Trust v X (2021) Sir James Munby said
“It is clearly established in English law that an adult (that is, someone who has reached the age of 18) is presumed, unless proved otherwise, to have capacity to decide whether or not to accept medical or surgical treatment. It is equally clear that a capacitous adult has an absolute right to accept or refuse treatment, for reasons good or bad or, indeed, for no reason at all, and even if the consequence of refusal is the certainty of very serious harm or even death. The decision of a capacitous adult is therefore determinative, in the strict sense in which I use the word. Subject only to being satisfied that the capacitous adult's expressed decision is in fact his true decision and not vitiated by the undue pressure of either events or people the only function of the court is to give effect to it, whether or not it might accord with his judicially-determined best interests. Indeed, the court is not concerned to evaluate, let alone to impose an outcome determined by, his best interests.”
You can even make that decision in advance and in anticipation of your incapacity.
Sections 24 – 26 of the Mental Capacity Act 2005 allow an advance decision to withhold medical treatment to be made by P to have effect if P becomes incapacitated, and that no liability shall be incurred by anyone withholding or withdrawing a treatment. The decision must be verified by a statement by P to the effect that it is to apply to that treatment even if life is at risk. The decision and statement must be in writing, signed by P in the presence of a witness, and signed by the witness in P's presence.
I have placed a template for such a signed decision on the Movers and Shakers website, and have signed one in those terms. It says
“If I should fall into a permanent vegetative state or a minimally conscious state, then artificial nutrition and hydration should be withdrawn without any delay with the objective that I should die as quickly as possible. For the avoidance of any doubt, I declare pursuant to section 25(5)(a) of the Act that I recognise my advance decision will place my life at risk.
I do not wish this decision to be the subject of any kind of review by the Court of Protection.”
While I accept that a philosophical debate could be had about the moral difference between, on the one hand, actively assisting a death by handing the fatal draught to the sufferer, and, on the other hand, passively assisting a death by switching off automated nutrition and hydration or withholding antibiotics, I cannot myself see the distinction. I recall catechism lessons where the nuns drilled into my head that there is no difference between sins of omission and commission. If in the real world active and passive help to die are morally equiparated then here is another example of the state participating in, assisting or facilitating a death.
I do accept, however, that the High Court in the Conway case has said that “an objectively clear line exists in law and fact at the moment between, on the one hand, an act or omission which allows causes already present in the body to operate and, on the other hand, the introduction of an external agency of death”. I do not dispute that in law this clear line exists, and the case-law stretches back over decades. But as the arguments for and against are now largely moral the lack of any moral distinction between what the law permits and what the law does not, surely demonstrates that the campaigners in favour of continued prohibition have already lost the argument.
Before I look at the five objections let me set out the reasons in favour of a reform of the law to allow active assisted death. As a person with Parkinson’s the Leadbeater Bill will be useless for me, as I will never be given a terminal diagnosis of less than 6 months to live, which everyone agrees will be its basic qualifying conditions for an assisted death.
If an assisted death law is to be enacted it must, in my opinion, be on the lines of the Spanish or Dutch laws. It must be aimed exclusively at giving relief to progressive unbearable suffering caused by an incurable chronic condition. I agree with Mr Rajiv Shah that the Bill’s qualifying condition of terminal illness is somewhat hard to square with the commitment to autonomy its proponents profess to have.
The reason why the reform is necessary is not merely to give effect to abstract concepts of autonomy and sovereignty. It is to enable people in my position, as I anticipate it will be before too long, but who cannot get to Dignitas, the means to be relieved of their personal Calvary. I completely reject the fundamentalist notion that suffering, whether directly or vicariously, is a spiritually uplifting or noble experience.
I do accept that occasionally the law stipulates that personal autonomy must be sacrificed for the wider good of the community, or sometimes simply because the exercise of a particular act of autonomy is morally harmful.
In the Noel Conway case the Court of Appeal pointed out that in other spheres the law has imposed a limit on personal autonomy to reflect wider moral, ethical and practical issues which (they say) include, but are not limited to, the protection of the weak and vulnerable. For example, in R v Brown (1994) the House of Lords held that consent was no defence to charges of Assault Occasioning Actual Bodily Harm arising from consensual sado-masochistic practices which involved mutilation of male genitalia. Lord Templeman said:
“ … it was said, every person has a right to deal with his body as he pleases. I do not consider that this slogan provides a sufficient guide to the policy decision which must now be made. It is an offence for a person to abuse his own body and mind by taking drugs. Although the law is often broken, the criminal law restrains a practice which is regarded as dangerous and injurious to individuals and which
if allowed and extended is harmful to society generally. In any event the
appellants in this case did not mutilate their own bodies. They inflicted bodily
harm on willing victims. Suicide is no longer an offence but a person who
assists another to commit suicide is guilty of murder or manslaughter.The evidence discloses that the practices of the appellants were
unpredictably dangerous and degrading to body and mind and were developed
with increasing barbarity and taught to persons whose consents were dubious
or worthless….Society is entitled and bound to protect itself against a cult of violence.
Pleasure derived from the infliction of pain is an evil thing. Cruelty is
uncivilised.”
I would suggest, with all due respect to the Court of Appeal, that the criminalisation of the uncivilised manifestations of a weird cult of violence tells us nothing about the merits of a proposal for a limited law allowing an assisted death.
In my opinion, when considering whether to enact an assisted death law (containing effective safeguards against direct coercion, and fierce sanctions against those who would abuse the process) it is not a question of balancing abstract notions of autonomy against theoretical objections. Rather, the question should be judged by specifically considering the position of a real person who is suffering intolerably from a disease or condition, with no prospect of cure, or of even slowing its downward progress. When the fate of that real person is directly considered, I suggest that the argument in favour of such a law becomes paramount, irrespective of any force of the counterarguments of the objectors, to which I now turn.
The first and most prominent objection is that the prohibition on assisted suicide in s 2 of the Suicide Act 1961 is necessary “to protect the weak and vulnerable”, as the High Court put it in the Conway case. The objectors say that were a limited assisted death law enacted it would somehow expose the weak and vulnerable to an enhanced risk of killing themselves against their true wishes.
In the Tony Nicklinson case Lord Sumption set out this argument with his customary eloquence:
"The vulnerability to pressure of the old or terminally ill is a … formidable problem. The problem is not that people may decide to kill themselves who are not fully competent mentally. I am prepared to accept that mental competence is capable of objective assessment by health professionals. The real difficulty is that even the mentally competent may have reasons for deciding to kill themselves which reflect either overt pressure upon them by others or their own assumptions about what others may think or expect. The difficulty is particularly acute in the case of what the Commission on Assisted Dying called "indirect social pressure". This refers to the problems arising from the low self-esteem of many old or severely ill and dependent people, combined with the spontaneous and negative perceptions of patients about the views of those around them.
The great majority of people contemplating suicide for health-related reasons, are likely to be acutely conscious that their disabilities make them dependent on others. These disabilities may arise from illness or injury, or indeed (a much larger category) from the advancing infirmity of old age. People in this position are vulnerable. They are often afraid that their lives have become a burden to those around them. The fear may be the result of overt pressure, but may equally arise from a spontaneous tendency to place a low value on their own lives and assume that others do so too. Their feelings of uselessness are likely to be accentuated in those who were once highly active and engaged with those around them, for whom the contrast between now and then must be particularly painful. These assumptions may be mistaken but are none the less powerful for that. The legalisation of assisted suicide would be followed by its progressive normalisation, at any rate among the very old or very ill. In a world where suicide was regarded as just another optional end-of-life choice, the pressures which I have described are likely to become more powerful. It is one thing to assess some one's mental ability to form a judgment, but another to discover their true reasons for the decision which they have made and to assess the quality of those reasons.
I very much doubt whether it is possible in the generality of cases to distinguish between those who have spontaneously formed the desire to kill themselves and those who have done so in response to real or imagined pressure arising from the impact of their disabilities on other people. There is a good deal of evidence that this problem exists, that it is significant, and that it is aggravated by negative modern attitudes to old age and sickness-related disability. Those who are vulnerable in this sense are not always easy to identify (there seems to be a consensus that the factors that make them vulnerable are variable and personal, and not susceptible to simple categorisation). It may be, as Lord Neuberger of Abbotsbury PSC suggests, that these problems can to some extent be alleviated by applying to cases in which patients wish to be assisted in killing themselves a procedure for obtaining the sanction of a court, such as is currently available for the withdrawal of treatment from patients in a persistent vegetative state. But as he acknowledges, there has been no investigation of that possibility in these proceedings. It seems equally possible that a proper investigation of this possibility would show that the intervention of a court would simply interpose an expensive and time-consuming forensic procedure without addressing the fundamental difficulty, namely that the wishes expressed by a patient in the course of legal proceedings may be as much influenced by covert social pressures as the same wishes expressed to health professionals or family members. These are significant issues affecting many people who are not as intelligent, articulate or determined as Diane Pretty or Tony Nicklinson."
Lord Sumption has since moderated his stance. In an article in the Daily Telegraph on 28 March 2024, he said, when discussing the Scottish Bill for Assisted Death:
“The Scottish Bill, if it is enacted, would require the prognosis of the patient and the voluntary nature of his or her decision to be independently assessed by competent medical practitioners. Procedural safeguards like these will not eliminate the problem of indirect social pressure. But it will limit it. There are no risk-free options in this area. The real question is how much risk to vulnerable people are we prepared to accept in order to facilitate suicide by those who are fully informed, mentally competent and determined to end their lives.”
However, he continues to maintain, as do all the objectors, that there is a substantial cohort of people with full mental capacity who nonetheless are weak and vulnerable and likely to succumb to indirect, unintentional, social pressure to end their lives sooner than the six months they have left to live under the terminal diagnosis under the Leadbeater and Scottish Bill which is a precondition of the right to seek an assisted death. He says that “there is a good deal of evidence that this problem exists”, the problem being apparently that some people may decide to seek an assisted death for reasons which “reflect either overt pressure upon them by others or their own assumptions about what others may think or expect.”
Now I do not know what evidence Lord Sumption is referring to. It seems to me that the degree of risk that Lord Sumption speaks of in his Daily Telegraph piece is going to be very small even under a Spanish-style regime. It is not as if anyone has produced any concrete evidence of the numbers of people whose primary or even subsidiary reason for seeking an assisted death is to relieve the burden that they are imposing on the rest of the family.
Whether the qualifying condition is intolerable suffering or a terminal illness the first requirement is that P must have a voluntary, clear, settled and informed wish to end his own life. If P has been subject to indirect social pressure, that will become obvious to the doctors (“between you and me, doctor, it would probably be better for everyone if I ended it now”). The doctors, however, can only lawfully certify that P has the requisite wish to end his life if the indirect pressure is so modest that it can still be said that the wish remains truly voluntary. It will not be “voluntary” if the pressure is such that it has coerced P into making a decision which he would not have made in the absence of such pressure. Here is the fundamental safeguard against undue pressure.
I am prepared to accept that it is possible that in a Spanish-style intolerable suffering regime, which does not require a prognosis of proximate death, P may seek an assisted death for subsidiary reasons reflecting feelings of uselessness and of being a burden to the rest of the family. But even if that were true, but it was nonetheless so modest that the requirement of voluntariness remained intact, the assisted death could not be authorised unless P satisfies both the attending physician and the independent physician that he is experiencing constant, intolerable, incurable physical or mental suffering.
So, let us be clear. The dominant, governing, objectively verified reason for seeking an assisted death has to be the intolerable irremediable suffering. Any ancillary subsidiary reasons will be of little, if any, relevance. The verifying doctors will have no difficulty in distinguishing between a qualifying reason caused by intolerable suffering (“doctor, I am in agony and I can’t bear it any longer”) and a non-qualifying reason caused by indirect social pressures (“between you and me, doctor, it would probably be better for everyone if I ended it now”) because they are self-evidently completely different in character. None of the countries that allow assisted death by reference to intolerable suffering has reported difficulties in distinguishing legitimate and illegitimate reasons.
In any event, it is hard to see why this problem, if it exists at all, should mean that an assisted death should be withheld from those people who are genuinely and authentically suffering intolerably and who just wish to be done with it.
Under the Leadbetter proposal the qualifying condition is a diagnosis of likely death within six months. Assume P has received that diagnosis and is seeking an assisted death. The doctors detect a modest degree of social pressure but not so much that it can be said that P’s decision to seek an assisted death is involuntary. How could it be reasonable in such circumstances to refuse P that assistance by reference to that non-determinative influence where he is going to be dead in six months anyway?
Similarly, I am not aware of the evidence which is relied on to support the proposition that to enact legislation permitting assisted death would compromise relations between doctors and patients generally. I can say that I see my neurologist Professor Chaudhuri frequently. He is fully aware not only of the terms of my advance decision but also of my intention to seek and assisted death either here, if possible, or in Switzerland if not, when the suffering caused by the disease becomes intolerable. He has not sought to dissuade me from my proposed course of action; indeed, I would like to think that he is sympathetic to it. In no way has my relationship with him been disempowered or compromised by virtue of the decisions I have taken.
Mr Shah’s two objections can be quickly despatched. His first argument is that to pass this law will “normalise” an assisted death and this is a bad thing. Why? If an assisted death is available where your natural death is proximate, but your journey there involves excruciating pain, that doesn’t ‘normalise’ the process but, rather, facilitates the ending of an intolerable situation.
Examination of the numbers in those places where assisted death is allowed does not suggest that to go down that path is “normal”. 464,417 people died in Spain in 2022. Of these 288 were assisted deaths (0.1%). In Holland in 2023 there were 9,068 voluntary euthanasia cases out of total deaths in that year of 169,363 (5.4%). In Canada in that year there were 13,241 medically assisted deaths out of 330,389 deaths (4%). In each country the overwhelming majority of deaths were not assisted.
It doesn’t look much like a ‘normal’ option.
His second argument is that confining the right to seek an assisted death to those who only have 6 months to live carries with it the message that the state somehow does not believe that such people have a life worth living for their final few months, and that this is also a bad thing. This makes no sense. To provide a process to ease the passing does not carry with it a value judgment by the state that the remaining period of life of the person making that choice is worthless.
This leaves the final objection which is to pass this law would be to proclaim that we do not have proper respect for the sanctity of life. The proponents of this argument invariably cite Lord Justice Hoffmann in the Tony Bland case (1993) where he said:
“No one in this case is suggesting that Anthony Bland should be given a lethal injection. But there is concern about ceasing to supply food as against, for example, ceasing to treat an infection with antibiotics. Is there any real distinction? In order to come to terms with our intuitive feelings about whether there is a distinction, I must start by considering why most of us would be appalled if he was given a lethal injection. It is, I think, connected with our view that the sanctity of life entails its inviolability by an outsider. Subject to exceptions like self-defence, human life is inviolate even if the person in question has consented to its violation. That is why although suicide is not a crime, assisting someone to commit suicide is. It follows that, even if we think Anthony Bland would have consented, we would not be entitled to end his life by a lethal injection.”
It was in reliance on this logic that the High Court said in the Conway case that “The prohibition serves to reinforce a moral view regarding the sanctity of life”
The sanctity of life is a strong presumption but is not an absolute precept. There are already many exceptions to it. We had capital punishment on the statute book until 1998; the last execution took place in my lifetime in 1964, 14 years after the European Convention on Human Rights had been signed and ratified by us. The taking of life by our armed forces when on operations happens all the time. The civilian death toll from British military global activities since 1945 amounts to about 1620 fatalities; the death toll of hostile combatants is over 10,000.
Closer to home both in time and distance, the High Court and the Court of Protection regularly make orders in a patient’s best interests withdrawing nutrition and hydration and permitting only palliative care, with the inevitable consequence of an early death. In the Aintree case (2013) Lady Hale acknowledged the strong presumption that it is in a person's best interests to stay alive but stated that this was not an absolute. In making the decision whether to withhold from the patient treatment which would keep him alive the court must look at his welfare in the widest sense, not just medical but social and psychological; it must consider the nature of the medical treatment in question, what it involves and its prospects of success; it must consider what the outcome of that treatment for the patient is likely to be; it must try and put itself in the patient’s place and ask what his attitude to the treatment is or would be likely to be; and it must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.
I myself have had to weigh these factors in a number of cases where I have ultimately reached the conclusion that the strong presumption in favour of life has been disproved by the evidence and that an order should be made which will lead to the patient’s death.
Parliament is supreme and can, of course, pass a law allowing a further exception to the precept, just as the legislatures of Spain, Holland, Belgium, Switzerland, Luxembourg, Oregon, California, Canada, Australia and New Zealand have done. In so doing, no message is being sent out that this country does not respect the sanctity of human life, but rather that it resects the obligation of the state to care for its citizens by facilitating the alleviation of intolerable suffering.
In this overly long piece I say nothing about the proposed safeguards other than to endorse completely the reservations and concerns expressed by Sir James Munby concerning the involvement of the judiciary in the process, and to commend the other safeguards as both comprehensive and suitably fierce in the sanctions that would be meted out on proof of breach of the requirements. I have asked before and I ask again: what further or better safeguards do the objectors have in mind? I cannot think of any.
My personal plea is that those MPs who are pondering how to vote on the second reading of the Leadbeater Bill on 29 November 2024 should make their decision standing in the shoes of a real person who is facing a seriously painful, prolonged and undignified death deriving from an incurable disease and who “devoutly” wishes to “end the heartache and the thousand natural shocks that [his] flesh is heir to”.
Now with updated addendum below the footnotes.
[1] The organic law 3/2021, of 24 March, on the regulation of euthanasia. “Organic” laws relate to fundamental rights and freedoms and important institutional areas as defined by the Constitution. They must be passed by an absolute majority of the Congress of Deputies. They are conceptually considered to be part of the Constitution.
[2] Assisted suicide has the doctor hand the fatal draught to P which P then lifts to his lips and drinks. Voluntary Euthanasia has the doctor hold it to P’s lips enabling him to drink it. I shall use the generic term “assisted death” to describe the process.
[3] In this piece I have assumed throughout that P is male, not only because a significant majority of people with Parkinson’s are male, but because the piece is a highly personal plea by me, a male. Of course, everything I say applies equally if P is female.
[4] When I refer to “this country” I am referring to England and Wales, and Northern Ireland.
Since writing the above I have read Sonia Sodha’s piece in the Observer on 7 April 2024 where she wrote without citing a single example of a useless medic or an incompetent judge to back up her argument:
“Proponents argue adequate safeguards are possible; the latest House of Lords bill proposed certification by two doctors that someone has the capacity to decide to end their own life and has done so without coercion or duress, signed off by a high court family judge. But this dissolves on scrutiny. Medical professionals are not trained in or necessarily any good at detecting coercive control; judges will have limited evidence to make their own call. In the family courts, judges can fail to detect coercive control even when confronted with detailed evidence about intra-familial relationships. Narcissistic abusers can be highly adept at fooling professionals. What level of outside influence is considered too much, how is it measured, and how sure must a judge be, given life and death is at stake, surely rendering the balance of probability evidentiary threshold usually applied in the family courts inappropriate?”
It seems to me that a major problem in the current debate is the inveterate practice of the opponents of reform to advance generalised tropes without hard evidence to back them up. I have referred above to Lord Sumption’s statement that “there is a good deal of evidence that this problem exists”, the “problem” being that some people may decide to seek an assisted death for reasons which “reflect either overt pressure upon them by others or their own assumptions about what others may think or expect.”
I do not believe that such evidence exists, let alone a “good deal of it”. I am not aware of any concrete evidence from those places that allow it of examples of sufferers seeking an assisted death for the primary or even subsidiary reason to relieve the burden that they are imposing on the rest of the family. Indeed, if we are going to argue the merits by reference to intuition rather than evidence, I would have thought that a much more likely scenario would be undue pressure by loved-ones to dissuade a sufferer from seeking an assisted death.
I have explained above that the doctors can only lawfully certify that P has the requisite wish to end his life if the indirect pressure is so immaterial that it can still be said that the wish remains truly voluntary. It will not be “voluntary” if the pressure is such that it has coerced P into making a decision which he would not have made in the absence of such pressure.
Sonia Sodha asks:
“What level of outside influence is considered too much, how is it measured, and how sure must a judge be, given life and death is at stake, surely rendering the balance of probability evidentiary threshold usually applied in the family courts inappropriate?”
In a case called Re T [1993] an adult pregnant Jehovah’s Witness refused a blood transfusion following a road traffic accident and thereby placed her life at stake.
Lord Justice Staughton was clear that “an adult whose mental capacity is unimpaired has the right to decide for herself whether she will or will not receive medical or surgical treatment, even in circumstances where she is likely or even certain to die in the absence of treatment”.
The question was whether her refusal was true, and therefore valid, or whether her will had been overborne. The Court had no doubt that this was a question that the doctors had to decide. Lord Justice Staughton explained the test they had to apply:
“In order for an apparent consent or refusal of consent [to medical treatment] to be less than a true consent or refusal, there must be such a degree of external influence as to persuade the patient to depart from her own wishes, to an extent that the law regards it as undue. I can suggest no more precise test than that. The cases on undue influence in the law of property and contract are not, in my opinion, applicable to the different context of consent to medical or surgical treatment. The wife who guarantees her husband's debts, or the widower who leaves all his property to his housekeeper, are not in the same situation as a patient faced with the need for medical treatment. There are many different ways of expressing the concept that what a person says may not be binding upon him; a Greek poet wrote “my tongue has sworn, but no oath binds my mind.”[1]
In applying that test in that type of case( i.e. where the question is whether the refusal was invalid thereby entitling the doctors lawfully to administer a blood transfusion) Lord Donaldson stated that the doctors (a) have to give very careful and detailed consideration to what was the patient's capacity to decide at the time when the decision was made, and be satisfied that it was not reduced below the level needed in the case of a refusal of that importance, and (b) be satisfied that the refusal has not been vitiated because it resulted not from the patient's will, but from the will of others. In this context the relationship of the persuader to the patient - for example, spouse, parents or religious adviser - will be important, because some relationships more readily lend themselves to overbearing the patient's independent will than do others. Applying those principles in that actual case led to the conclusion that T’s mental and physical state when she signed the form of refusal, the pressure exerted on her by her mother and the misleading response to her inquiry as to alternative treatment, meant that her decision was not effective and that the doctors could therefore administer a blood transfusion against her will.
That is the answer to the first part of Sonia Sodha’s question.
Making complex judgments like this are expected of doctors all the time. It is elementary that whenever a medical procedure, including the prescription of medication, is proposed by a doctor to a patient, the doctor has to be satisfied that the patient has given a fully informed consent before the procedure is implemented.
There is no material difference between the decision that doctors are required to make in the circumstances described in Re T and that required of them under the Leadbeater Bill. In both cases the doctors have to decide if P’s decision is true and therefore valid.
It is not only in this scenario – whether a consent is valid – that a decision by a doctor about a patient’s state of mind is required. Not infrequently, a patient attends a doctor (perhaps with a chaperone) and the doctor suspects domestic abuse of the patient by her partner, but this is denied by the patient. Here the doctor has to make a judgment whether the denial is true, perhaps by contriving to speak alone to the patient, and if not so satisfied must initiate safeguarding procedures. (The MDU’s Safeguarding Vulnerable Adults states “You have a legal and ethical duty to raise concerns (with the local Safeguarding Adults Board) if you suspect a vulnerable adult patient is being abused or neglected”.)
Another example is where a girl under 16 attends a doctor seeking contraceptive advice. Then, pursuant to the Gillick case [1986] the doctor has to be satisfied that the child has sufficient maturity to understand what is involved, and specifically that she comprehends that there are moral and family questions, especially concerning her relationship with her parents; long-term problems associated with the emotional impact of pregnancy and its termination; and risks to health of sexual intercourse at her age, which contraception may diminish but cannot eliminate. Lord Scarman was clear that “It will be a question of fact [for the doctor] whether a child seeking advice has sufficient understanding of what is involved to give a consent valid in law.”
So, I respectfully disagree with the suggestion that medical professionals are “not necessarily any good at detecting coercive control”, and therefore (I assume) cannot be trusted to take on the fact-finding responsibilities required of them in the Bill.
In determining whether P’s wish to end his life is truly voluntary the doctors will not be thinking in formal legal terms about concepts such as duress or undue influence. They will act inquisitorially and examine the request for an assisted death in a rounded non-legal way eschewing legal constructs about the burden of proof. They are well-equipped to do so.
I similarly reject the imputation that judges routinely “fail to detect coercive control even when confronted with detailed evidence about intra-familial relationships.” Making judgments about the existence, impact and treatment of undue pressure has been a prominent feature of judicial work for centuries. Way back in 1887 Lord Justice Lindley said “ the influence of one mind over another is very subtle, and of all influences religious influence is the most dangerous and the most powerful, and to counteract it courts of equity have gone very far.”
For other reasons I do not agree with the suggested involvement of the judiciary as proposed, although the court would always be able to grant a temporary injunction preventing an assisted death pending a full hearing where on the application of a family member it was satisfied that the requirements for that assisted death may not have been met and that it was therefore arguably unlawful – as happened on 30 October 2024 in British Columbia. But if the judges are to be involved their competence to decide the key question cannot be doubted.
The second part of Sonia Sodha’s question suggests, if judicial approval is to be required, that the civil standard of proof should be elevated from the balance of probability to (presumably) the criminal standard of being satisfied beyond a reasonable doubt. Contrary to her belief the balance of probability standard is not confined to the family courts but applies to all civil proceedings and has done so for centuries. It has been applied in those difficult life and death cases that have all too frequently come before the High Court and the Court of Protection. It would be highly anomalous to require the criminal standard uniquely for an assisted death case, and Sonia Sodha gives no reasons why in that type of life and death case, but not in the other types of life and death cases there should be this exception.
[1] Sir James Munby later explained in another case that the reference to a Greek poet was to a line in Euripides’ Hippolytus which, “can perhaps be translated literally as 'my tongue has sworn but my mind' (that is, the mind as the seat of the mental faculties, perception, thought) 'is unsworn'.”