Desmond Swayne: Same old Assisted Dying plan, same old unsolved problem – that it would put the lives of the vulnerable at risk

4 Dec

Desmond Swayne is a former International Development Minister, and is MP for New Forest West.

The pressures are being ramped up yet again to legalise what’s being called ‘assisted dying’ for terminally ill people.  No one can doubt the sincerity of those concerned, but the idea just hasn’t been thought through.

We are told not to worry, because there would be strict safeguards.  But when you look more closely at these, you see they are little more than vague phrases.  Let’s examine some of them.

Doctors can diagnose terminal illness and offer a prognosis, but their judgements and forecasts are vulnerable to error.  Lord Mackay’s Select Committee, which looked at the proposal, was told of errors, including misdiagnosis of terminal illness, revealed in around one in twenty post mortems.

Doctors pointed out to the committee that prognosis is far from being an exact science and that, at a range of six months, it was, in the words of one doctor, “pretty desperately hopeless” (House of Lords Report 86-I (2004-05), Paragraph 118).

But doctors would be expected to do more than diagnose and offer a prognosis.  They would be expected to make decisions on whether a wish to die was a settled wish, or whether there were any family or other pressures underlying a request.  These are not medical matters, and many doctors are in no position to offer a knowledge-based opinion on them.  Gone are the days when the ‘family doctor’ is a regular visitor to our homes and knows us and our families well.

We are told that doctors’ decisions would be referred to a High Court judge for confirmation. It’s one thing to ask doctors to give the Court their professional opinion on medical matters: they do this already in other contexts.  But they cannot be asked to make judgements beyond these.  If assisted dying were ever to be legalised, it must be on the basis that the sole decision-maker would be the High Court, and that doctors would be involved only to give the Court expert advice on matters strictly within their professional expertise.

Surveys of medical opinion reveal that there is no majority of doctors willing to participate in ‘assisted dying’.  Among doctors who specialise in care of the dying nine out of ten say they would not touch it.

Oregon has encountered just this problem.  People seeking lethal drugs there often have to shop around for doctors willing to assess them.  Yet a doctor introduced to a patient solely for this purpose is ill-placed to make a knowledge-based assessment of a request.

The inevitable result is multiple prescribing by a minority of doctors.  In 2019, one doctor in Oregon wrote no fewer than 33 prescriptions for lethal drugs.  The involvement of doctors in ‘assisted dying’ simply hasn’t been thought through.  

It’s easy enough to say a request for assisted dying must be voluntary.  But how is such assurance to be found?  The proposals being advanced are silent on this.  Freedom from pressure is presented as an aspiration, but there are no minimum steps mandated to ensure that valid judgements can be made about it.

And it’s not just pressure from others.  There’s also internal pressure – feelings of guilt in a terminally ill person at being a (perceived) care or financial burden on the family.  Such feelings can be much harder to uncover, yet they can be a major factor in a request for ‘assisted dying’.  Among people in Oregon who ended their lives through swallowing legally-supplied lethal drugs last year, nearly three out of five gave as one of their reasons that they felt a burden on family or caregivers.

It is proposed that assessing mental capacity for ‘assisted dying’ would follow the principles of the 2005 Mental Capacity Act (MCA).  But the MCA proceeds from the principle that a person must be assumed to have capacity unless it is established that he or she lacks it.  While this is a reasonable principle for the purposes for which the Act was designed, it’s a dangerous principle on which to proceed where people are seeking assistance to take their own lives.  Given the gravity and irrevocability of such an act, the burden of proof surely needs to be the other way round.

That aside, there’s the matter of depression.  It’s possible to have our thinking processes intact, but to have our judgement impaired either by illness or by circumstances.  Transient depression is a common feature of terminal illness.

This serious issue cannot just be brushed aside, as some of the advocates of ‘assisted dying’ do, by saying that a degree of sadness is inevitable in someone who is terminally ill.  We are not talking about sadness here, but about depression.  The Mackay Committee was told of “episodes of reactive depression as a result of the diagnosis of a life-limiting illness” and that “there is a significant incidence of moderate to severe depression and anxiety at various stages throughout the course of many diseases” (House of Lords Report 86-I (2004-05), Paragraph 124).

Proposals for assisted dying skate over this problem.  They require a doctor to consult an expert in capacity assessment only in cases of doubt.  Yet Oregon’s experience has shown that this ‘if in doubt’ approach can fail.  A study of a small number of persons expressing interest in ending their lives with legally-supplied lethal drugs found that one in three of those who had ended their lives in this way had been suffering from clinical depression, which had not been picked up by the assessing doctor or referred for an expert opinion.

It’s been proposed that an assisted dying law should empower the relevant Minister to issue ‘codes of practice’ to provide guidance on how those assessing a request should go about doing so.  These codes would, however, be issued only after Parliament had agreed to change the law.

Yet the nature and robustness of safeguards is of the essence of any decision to agree to such legislation.  Parliament needs to see how any proposed safeguards would work before, not after, agreeing to change the law.  The proposals we have seen are effectively inviting Parliament to sign a blank cheque.

These are just some of the unthought-through problems in the proposals for licensing doctors to supply lethal drugs to terminally ill patients.  There is nothing new about what is written here.  These serious deficiencies have been drawn to attention time and again, but nothing has been done to resolve them. The time is well overdue for the assisted dying lobby to address these and other issues seriously, rather than to be wheeling out the same failed ideas over and again.  Parliament deserves better.

Andrew Mitchell: I used to be adamantly opposed to all forms of assisted dying. Here’s why I changed my views.

22 Jul

Andrew Mitchell was International Development Secretary from 2010 to 2012. He is the MP for Sutton Coldfield.

The All Party Group on choice at the end of life – composed of members of both the Commons and the Lords – held its first ever virtual meeting last week.

That more than 60 members of Parliament chose to attend at 9am is an eloquent testimony to the seriousness with which Members of Parliament are examining the issue. At the meeting I agreed to be the co-Chair of the group along with my Labour colleague Karin Smyth, the Member of Parliament for Bristol South.

When I entered the House of Commons in 1987, I was adamantly opposed to all forms of assisted dying. But over the years (perhaps it is part of the ageing process) I have completely changed my mind.

Let me explain why.

It is first and foremost because of my experience as a constituency MP. I have sat in my office in the Royal Town of Sutton Coldfield and heard stories from so many of my constituents. Often with tears pouring down their faces, they have given me deeply intimate details of the last days of someone they loved but who died a miserable and sometimes very painful death.

By the end of these meetings, often with tears coursing down my own face, I was invariably left with two overwhelming feelings: the first is that we would not let an animal we loved be treated in such a way and, second, I do not myself wish to go through the sort of end of life experience that my constituents have so often eloquently described.

And just as I would not want it for myself, I no longer want members of my family or those I represent in Parliament to have to navigate so awful an end.

I believe the time is approaching when Parliament must examine this again. This is not a party political issue subject to whipping; it is an issue of conscience where members of the House of Commons hold different views reached entirely honourably on the basis of their own personal beliefs.

Assisted dying could be the great liberal reform achieved by this government. Public support for assisted dying is overwhelming and consistent across all parts of society. Out of the British public, 84 per cent support assisted dying including 86 per cent of Conservative voters. Of Conservative Party members, 67 per cent support assisted dying. It is interesting also to note that 79 per cent of people of faith and 86 per cent of people with disabilities support assisted dying.

Support is also highest in the North East, East Midlands and Yorkshire and Humber. It is lowest in London. So this is not a liberal metropolitan issue; it is one that unites the country.

Assisted dying is legal in 10 states in the United States of America (some for more than 20 years), two states in Australia, nationwide in Canada and likely to be nationwide in New Zealand later this year. It is interesting to note that in no country with legalised assisted dying has the law been repealed. And in Britain we now have the opportunity to look at the differing legislative approaches in all of these countries, evaluate them, and deliver the best possible results for our constituents.

Consider these facts:

  • Everyday 17 people in the UK will die in pain and distress that cannot be prevented by even the very best palliative care.
  • Hospices now acknowledge that some dying people are in so much pain medication doesn’t work.
  • One Britain travels to Switzerland for assisted dying every week at a cost of around £10,000, the expense, the difficulty of traveling when terminally ill and the challenges of obtaining the necessary documentation put this option out of the reach of all but a few.
  • Those who accompany their loved ones to Switzerland run the risk of police prosecution. Ann Whaley, married to her husband Geoffrey for more than 60 years, was interviewed under caution by police officers.
  • Around 300 terminally ill people take their own lives every year behind closed doors. The effect of these suicides on their family and on responders can be devastating. Some of them have gone wrong, which has added to the immense distress. Mavis Eccleston helped her husband of almost 60 years, Dennis, who was dying in agony to take his own life and was later prosecuted for murder. She was acquitted by a jury but only after 18 months of investigation. This brought huge distress to her and her family.

There is also a risk in maintaining the status quo as attitudes among the public change. The increased reporting of cases undermines public confidence in the law. Almost half of police and crime commissioners including five Conservative PCC’s have called on the Government to review the law saying the current law does not protect vulnerable people.

The medical profession’s views are shifting too: the Royal College of Physicians moved its position to neutrality in 2019 and the Royal College of General Practitioners who surveyed their membership this year found a surge in support for assisted dying – 41 per cent compared to just five per cent in 2013.

As assisted dying becomes more established and understood in other English-speaking countries, demands in the UK for the law to change will continue to grow.

Many of us hope that the Health Select Committee under Jeremy Hunt, its distinguished and experienced Chair, might consider an inquiry which took evidence from the various sections of society that are most affected: dying people and their families, police officers, healthcare professionals and coroners, so that the issue can be explored further.

The Health Select Committee will currently be heavily preoccupied with the Covid crisis but perhaps in due course they may feel this is a subject which they are well placed to examine.

So finally, what are the modest changes those of us who want reform are seeking?

  • We want to give people who are terminally ill (and also in the final months of their lives) the option of dying on their own terms. We want this to be an active choice by a rational person to end their own life as they wish.
  • The change in the law we propose would contain stringent safeguards to protect people; it would only be accessible to mentally competent adults.
  • Two doctors would assess the person making the request to ensure that they met the eligibility criteria under the law. They would explain all other care options in full.
  • A High Court judge would examine the person’s request and make sure that it was being made voluntarily – free from any pressure or coercion.
  • Once the request was approved, a doctor would be able to prescribe life-ending medication for the person who would then take it themselves under the supervision of a doctor or another healthcare professional.
  • Healthcare professionals who wanted to exercise conscientious objection would, of course, be able to do so.
  • There would be clear reporting procedures for doctors as well as monitoring through an annual report published by the Government.

The law change that we propose is based on one that has operated in Oregon in America for 23 years. We would like to add additional safeguards built in to make it right for the UK. There have been no cases of abuse of Oregon’s law and no extension of its eligibility criteria throughout these 23 years. This model of assisted dying legislation has since been adopted in nine other US states and passed by lawmakers in Australia and New Zealand.

Wherever you stand on this issue, let us now have a calm and measured debate on the best way forward. I believe this is a reform whose time is approaching.