I’ve chaired a local discussion in Surrey, last week, about the pros and cons of assisted dying. It must have been one of the most fortuitously ever timed dates in the history of Farnham Humanists’ calendar, 2 days before the decision of Parliament on Friday, to let the Terminally Ill Adults (End of Life) Bill proceed past its Second Reading, for the real work now required to make it into a law that as many MPs in favour at this initial stage, can ultimately bear to vote in favour of.
My own views are at the end, and it will surprise no-one that they are all about the pressure brought to bear on people from the fear of being a burden.
First, though, an overview of how we’ve reached this point and how we might compare to the other jurisdictions where MAID or PAID is possible. The irony of those acronyms should not be wasted on anyone – its either Medical or Physician Assistance in Dying!
The existing legal problem with assisted dying – and a review of the position in other countries
Suicide used to be a crime, here, with survivors prosecuted and imprisoned and any family members who assisted, potentially being prosecuted. Religious and moral objections abounded, regarding suicide as “self-murder”.
Now, however, there is a wider range of moral and philosophical views held by different groups in society, concerning the balance between the limits of personal autonomy, and the notion of a duty to continue life regardless, whether to protect other people from the harm of having to help people kill themselves, or to protect society and the vulnerable from coercion and pressure.
Nobody wants to see anyone’s suffering lengthened, but how to prevent that, is the legal conundrum.
You can read the Humanists UK overview https://humanists.uk/2023/07/11/the-assisted-dying-inquiry-everything-important-that-was-said/ of the most recent high level inquiry into the pros and cons of the topic by the Health and Care Select Committee, here.
Over 350 million people across the world have access to assisted dying and in every country that has legalised it there is no call to criminalise it again.
Supporters contend that the practices preserve an individual’s autonomy and self-determination during the end of life and allow people to choose a death with dignity; that euthanasia and assisted suicide are occasionally the only option to relieve unbearable suffering and that quality of life takes precedence over quantity of life; the option being an important aspect of the care for those who are dying, one in which physicians can facilitate death in a ‘safe’ and certain way, that suicide by other methods cannot.
Conversely, opponents argue that euthanasia and physician-assisted suicide practices violate the medical code and the Hippocratic Oath, result in damage to the patient-physician relationship and undermine public trust in the health care system. They maintain that suffering, no matter how unbearable, can be relieved with adequate palliative care in theory at least, that doctors already provide such ends through the doctrine of dual effect, and warn that vulnerable populations including the disadvantaged and disabled will be impelled toward premature death by dint of perceived pressure, if not individual coercion.
The “slippery slope” argument suggests that inevitable and undesired expansion will take place once euthanasia and/or physician-assisted suicide are legalised and the practices will result in error, abuse and infringement on the rights of vulnerable populations. As a percentage of all Medically Assisted deaths in Canada, those for whom their death was not reasonably foreseeable represented just 0.14% of all deaths in Canada in 2022 (compared to all MAID provisions, which represented 4.1% of all 2022 deaths in Canada).
There have been calls to widen it, which have either needed new legislation or broadening by the Courts based on constitutional rights. Here, that will not be possible, because however discriminatory our legislation might be, by dint of excluding people undergoing intolerable levels of suffering or facing the inadequacy of palliative medicine) Human Rights do not trump crystal clear words in the legislation, which is geared to cover only objectively terminally ill people with a 6 month life span left. Canada has legislated to exclude people with only a mental illness, and that has been done in the draft Leadbeater bill, now going forwards for further scrutiny, as well. But that exclusion does not include neurocognitive conditions such as dementia. The UK’s version depends on a capacitated decision until the very last moment of self-administration.
The current law
Section 2(1) of the Suicide Act 1961 provided as follows: “A person who aids, abets, counsels or procures the suicide of another, or attempt by another to commit suicide shall be liable on conviction on indictment to imprisonment for a term not exceeding fourteen years”
Following a series of cases, the courts and DPP have accepted that a person has a right to autonomy over their own body under Article 8, such that there is a legal right to end one’s life at a point of one’s own choosing. The Courts have, however, left it to Parliament to legislate and discuss these important ethical issues, not because they don’t get involved in life or death decisions (they do, all the time, regarding authority to cease medical provision on a best interests basis) but because any law we get, must deal with checks and balances and requires careful thought and drafting, and underpinning through democratic support.
How has the law developed in other countries?
There are laws that permit assisted suicide, including physician-assisted suicide, worldwide, including Canada, Colombia, New Zealand, various states, but not all, in the USA and Australia and across Europe. Several European countries permit it already: Switzerland, Netherlands, Belgium, Luxembourg, Spain, Portugal, Italy; and considering it are Scotland Isle of Man, Ireland and Jersey.
In some countries assisted dying is recognised as a constitutional right, whereas in others it is designed to protect doctors who practise euthanasia. Some countries do not distinguish between physical or mental illnesses when it comes to requesting assisted dying, eg in Spain, allowing anyone to make a request if they have a “severe, chronic and debilitating condition or illness” with no possibility of improvement. In Japan suicide is still a crime. The French Government introduced its end of life care bill in April, following a citizens’ jury, which had overwhelming support for law change.
The Bill for the UK is likely to provide that, if statutorily defined procedures are followed, no offence of assisting a suicide under the 1961 Act will be committed. These are the issues worth considering:
1. What conditions will a person need to satisfy to gain the potential right to be assisted by a doctor (or anyone else) to die?
The Bill will provide that the right to a lawful physician-assisted death will only be available to someone with a terminal illness, namely someone who “as a consequence… is reasonably expected to die within six months”. Those with chronic diseases may suffer terrible and uncontrollable suffering from their condition but a doctor may not be able to say that the person would be “reasonably expected to die within six months”. There may be those who propose that Parliament should adopt the Canadian wording of “advanced state of irreversible decline”.
It doesn’t look as if it will be possible to BRING oneself to terminal illness by refusing medication because the definition employs an objective test of the condition not being able to be reversed by medication.*
2. What procedures will have to be followed by a potentially eligible person in order to gain the right to be assisted by a doctor (or anyone else) to die? A person will need to show that
(a) the individual has capacity to make the decision themselves, almost certainly using the capacity tests under the Mental Capacity Act 2005, and
(b) that the individual has made an informed, voluntary decision that he or she wants to die at a point of their choosing.
The assessment as to whether a person has capacity and has made such a decision will be required to be made by a doctor, and that decision will have to be supported by a second doctor.
That scheme leaves open the following issues: what type of relationship should the doctors or one of them, need to have with the person, to qualify? What procedures will the doctor(s) have to undertake? How is the doctor supposed to test the voluntariness of the patient’s decision and/or whether the person is acting under pressure from anyone else? Would the doctors have to have had any special training? Commentators make the point that there are well-established models for establishing consent for certain lifetime organ transplants under the Human Tissue Act 2004 – thorough, and undertaken by specially trained staff, but not by doctors.
The Bill is likely to suggest that approval for each case of physician-assisted dying has to be given by a High Court Judge of the Family Division. This proposal potentially raises some difficult issues including: judicial numbers and capacity for handling many applications, would oral evidence be required, and due process issues for those whose capacity is declining. Will legal aid be available?
3. What protections will there be to prevent vulnerable elderly people from being persuaded to end their own lives prematurely?
It is unclear how, in practice, the Bill will lay down standards which have to be met in order to protect individuals against exploitation. There are several possibilities: creating a window or “pause” where the person has to consider matters without their family interfering /discussing; providing appropriate additional support to that person by way of care and palliative services so that they can see the alternative options; the availability of that care, without the need for a legal fight, and whether it should be prioritised, or preventing dispersal of an estate where someone has died by way of physician-assisted suicide for a period of time to prevent pressure from being able to have an effect; and/or providing or requiring a course of counselling/therapy/oversight to ensure that someone is not being persuaded into doing so.
4. Will doctors be able to assist those who want a physician-assisted death as part of NHS treatment?
There is a power in the Bill for provision as part of the NHS. Without NHS funding, this may only be an option for the relatively wealthy (and that itself may represent a fresh breach of Article 8 for the severely disabled). Do we want private clinics and the industry that will inevitably grow up around this new service? What will the GMC guidance to doctors who are undertaking this work need to say, or should there be a specialist regulatory body to offer multi-disciplinary oversight?
5. Will doctors be obliged to take part in such a procedure?
The Bill enables opt-out but on the basis of a duty to refer on to another doctor willing in principle. That is no more than sign-posting but it may still be offensive to some. Many doctors may legitimately conclude that this is not a professional service that they are prepared to provide, because of conscientious objection.
6. What should the doctor do if the doctor has concerns about the voluntariness of the patient’s decision or is concerned about the case for any other reason?
The doctor should refuse to give the requested certificate. But there do not appear to be any present proposals to build in appropriate safeguards to prevent “doctor shopping”. If a doctor has refused to provide a certificate because, for example, the doctor concluded that the person may lack capacity or is not someone with a terminal illness who is reasonably expected to die within six months, it could be said to be important that any other doctor who is approached should be made aware of the concerns previously raised.
One way around this would be to require any doctor refusing a certificate to set out reasons for doing so and for such reasons to be included in the patient’s GP notes; and that any doctor asking for a certificate should be required to be provided with full access to the patient’s GP notes. That is not entirely straightforward because compulsory inclusion of material in a person’s GP notes gives rise to other issues, particularly if the person profoundly disagrees with the conclusions in the statement of reasons.
Other features to consider
No major disability advocate groups in the UK – including Disability Rights UK, Scope and Not Dead Yet – support a change in the law to introduce assisted suicide or euthanasia. No doctors’ groups in the UK support changing the law to introduce assisted suicide or euthanasia, including the British Medical Association, the Royal College of General Practitioners, the Royal College of Physicians, the British Geriatric Society, and the Association for Palliative Medicine, although some moved to a position of neutrality before the Bill passed the 2nd Reading stage. In particular, there is strong opposition to introducing assisted suicide from doctors who specialise in working with people with incurable conditions at the end of their life. A survey of palliative care doctors who are members of the Association for Palliative Medicine found that 82% oppose the introduction of assisted suicide.
Experience in Oregon and Victoria has shown that a doctor does not need to be present for the administration of medication to be ‘safe’. A High Court judge could be said to be unnecessary when two doctors have already given their opinions. A prognosis of six months or less to live could be said to be arbitrary and imprecise, and a 21-day cooling-off period, too long for people with only a very limited time to live.
A recent poll published in The Telegraph found that the general public placed legalising assisted dying as 22nd out of a list of 23 possible priorities for the new Government.
Whereas if it is to BE a priority, the largest and most in-depth survey of public opinion on assisted dying, published in March this year, found 75% in Great Britain are in favour of change with a majority of support in every parliamentary constituency and across all ages, genders, socio-economic status and voting intention.
Wes Streeting, who voted in favour of changes to the law in 2015, but against the Bill now on its way through further Parliamentary scrutiny, was concerned at the responsibility for deciding how to budget for a new obligation with current palliative care funding being in a woeful state and largely dependent on charitable giving.
He was vilified for raising this point by the likes of Harriet Harman. But the calls of demonstrators to Fix Care First, shows he is just a realist. This is a matter of politics, and one for which he is unlucky enough to be responsible.
In many countries where Assisted Dying has been brought in, the legislature has been obliged to direct additional funding in order to avoid the appearance of encouraging people to end their lives to save money for the State and their relatives.
The hospice sector in England believes that an extra £350m-400m of annual statutory funding, around 0.2% of the NHS budget, would allow it to meet demand fully by plugging current gaps, although the need for assisted dying would remain, because in around 1% of cases, the best palliative care does not ease physical pain.
My own personal views
As a member of Farnham Humanists, and as Chair of a public discussion held a couple of days before the vote on the Leadbeater Bill in Parliament, I have to say that to most Humanists, the imposition of MPs’ often faith-based morality, through a ‘free’ vote – i.e. a vote driven just by their own conscience, on which their religious faith probably impinges, is a challenging concept in itself, but we haven’t thought of a way around that problem. MPs are free to take their religious faith to work for the rest of us.
But to this particular Humanist, the stances being indulged in by people with a platform – particularly journalists – regardless of religious layering on top, and regardless of whether they are for or against – are particularly aggravating.
To me, few commentators chose to address the elephant in the room, before the debate, or afterwards, in terms of the media coverage of the concerns of those who were against letting the Bill go forward.
The elephant in the room is already in a state of terminal decline: it’s social work and social care, never mind palliative care. Before one is within 6 months of one’s end, there’s another 6 months, another 6 years, or for some, 60 years before that, of coping with one’s condition or illness or disability.
Fear of being a burden is cited as a reason in four out of ten cases* in Oregon, which has had an assisted-dying law for over 25 years in the States. 90% of people having an assisted death there were enrolled in hospice care in any event.
It would be better if people didn’t feel burdensome, obviously, but that does not stop them from making rational choices. The option to die may be all the comfort people seek: a fifth of those handed the medication in Victoria never take it.
But what makes people who are ill, disabled or frail, feel like a burden in the first place? It’s their dependency – doh!! which is why one is supposed to be entitled to adequate adult social care to support living a halfway decent life, despite one’s condition, or one’s disability, or one’s chronic illness, in this country.
Willing and able informal care offsets the State’s obligation but the market has started to implode due to central government control of the funding available to councils, and the NIC and minimum wage changes in the budget – whilst informal carers are already pushed to the limit. For some, at least, their capacity to care in terms of the hit on their own family’s finances, may well be affected by the IHT changes to unused pension pots in the budget, too.
Yet the law, already, under the Care Act provides that nobody should be feeling like a burden, because the State should be paying for what it already legislated for. That is adequate social care, subject to criteria and public law requirements of sufficiency and appropriateness – and yes – chargeable, for now, but in accordance with regulations ensuring a sort equitable outcome, regardless of how MUCH care one needs.
That legal right is currently disappearing from society, because of the choices made by the previous government – and now, too – it looks like this one is determined to head in the same direction.
The immorality of pretending that people have got legal rights, bigging up the rule of law and Parliament’s far-sightedness – and then just shrugging off the cost of abiding by the law, is impacting on 400,000 people, right now, rather than the 6000-10,000 a year that might benefit from physician assisted deaths.
Yet no journalist, no newspaper, no TV programme (not even Eastenders or DIY SOS!) has does anything about that to make it into an issue that the public can grasp the significance of.
How, I wonder, are the doctors involved in the Assisted Dying process going to do a good job of explaining that people HAVE these legal entitlements, whilst admitting, when a query is raised as to how to get them, in practice, that the fight for them (or even getting assessed, let alone provided for), is an unlikely aspect of most people’s bucket lists, for living out their last couple of years?
I have yet to meet a GP who knows the first thing about the Care Act, or the public law principles that underpin the difference between a LEGAL Care Act process and one that no reasonable council could expect to be allowed to get away with.
This is not a reason for voting down the Bill or abstaining, but it is a reason for getting on with the real business of making the Bill better.
If it acts as a reminder to Parliament and within the Treasury in particular, of the existing funding obligations, under the Care Act, let alone with respect to palliative care, it will have all been worth it.
* In the first decade of assisted dying legislation in Oregon, an average of 65% of participants were privately insured. Since 2008, this proportion has reversed; in 2022, 20.5% of those who died with lethal drugs held private health insurance, while the majority (79.5%) had government insurance through Medicare or Medicaid, for a rough comparison with how the existence of the NHS might affect people in the UK.
In that same period, the percentage of assisted patients who cited being a burden on family and friends increased during the time period. In the first 5 years of assistance, an average of 30% of participants were concerned about being a burden. Since 2017, this concern has been cited by around half of those who die by this means – 46% in 2022.