Public opinion runs high over severely ill people seeking access to a service allowing them to take their own life under clinical control. Could current law on assisted suicide be changed? Jennifer Taylor reports
The public is ahead of Parliament on the assisted suicide debate, says former health secretary Patricia Hewitt.
“All the public opinion surveys suggest a very large majority of the public would like to see assisted dying made lawful in Britain. And certainly they think friends and relatives should not be prosecuted for taking a loved one abroad. But Parliament hasn’t yet seen fit to change the law.”
Last month Ms Hewitt tabled an amendment to the Coroners and Justice Bill which, if law, would protect from prosecution people who take terminally ill patients abroad for assisted suicide. As it turned out the amendment was not debated during the bill’s time in the House of Commons, but the issue will be revisited in the House of Lords.
Ms Hewitt believes the chances of amendment are high, because it would give statutory force to a policy which the director of public prosecutions has already enforced.
‘If somebody is dying anyway and they are suffering unbearably, then what you are doing is substituting a good death for a bad death’
Of the 100 or so people who have gone to the Dignitas clinic in Zurich, Switzerland, (where assisted suicide is legal) for an assisted death, no friend or relative has been prosecuted, although many have been interviewed by the police. The DPP has now made it clear he would not normally prosecute somebody simply for accompanying a friend or a relative to Switzerland for an assisted death.
“I welcome that, but it is still discretionary and what’s given by discretion can be taken away by discretion,” says Ms Hewitt. “I think this is a matter on which Parliament should decide and Parliament should be giving statutory force to that policy. In the longer term I would also like to see the law changed to permit assisted death here in the UK.”
The debate on changing the law has both fierce support and opposition - and a large group who sit on the fence.
Pressure group Dignity in Dying campaigns for legislation to allow terminally ill, mentally competent people to have the choice of an assisted suicide in the UK if they feel their suffering is unbearable.
“We’re quite clear that somebody has to be dying. If somebody is dying anyway and they are suffering unbearably, then what you are doing is substituting a good death for a bad death, rather than a death for a life,” says chief executive Sarah Wootton.
She says UK legislation would give greater scrutiny and protection for vulnerable people than exists at the moment. She believes a law which would allow people to apply for an assisted death in a safeguarded, processed way would put an end to people going abroad, mercy killing and doctors hastening death.
While committing suicide is not a crime in England and Wales, assisting someone is. (Suicide has never been illegal in Scotland and there is no law on whether or not it is criminal to help others.) But Ms Wootton says the law does not distinguish between maliciously encouraging somebody to commit suicide and compassionately assisting a terminally ill, mentally competent person to die.
Doctors, particularly specialists in palliative care, are at odds with public opinion on assisted suicide. Research by Clive Seale, professor of medical sociology at Brunel University’s centre for health studies, showed 35 per cent of UK doctors were in favour of physician assisted suicide for terminally ill patients, compared with 62 per cent of the general public.
And a poll of the Association for Palliative Medicine’s 1,000 members showed a massive 96 per cent were against changing the law to allow assisted suicide in the UK. Their concerns, says Andy Thorns, a consultant in palliative medicine and chair of the association’s ethics committee, are primarily around vulnerability and the risks of patients being coerced or feeling they are a burden and deciding to end their life prematurely.
Second, says Dr Thorns, they feel debating assisted suicide for the few who may want it detracts efforts from the bigger priority of improving palliative care and end of life services, which affect many more patients.
These doctors’ views may be a barrier to changing the law in the UK, says Professor Seale, given that the Dutch Medical Association and Oregon Medical Association both played a key role in persuading law makers to make changes in the Netherlands and the US state of Oregon. Physician assisted suicide is now legal in both places.
The issue is complicated by considerable misunderstanding around end of life care.
“We get calls saying ‘I don’t want to give [my patient] that dose of morphine because that will end his life’,” says Dr Thorns. “There’s very, very good evidence to say that would not be the case and what probably happens instead is that people don’t get good symptom control, because of these misconceptions and these fears.”
In Professor Seale’s study, UK doctors were found to have given treatments to relieve suffering that they knew might lead to an early death in 17.1 per cent of deaths, which is lower than many other countries.
“Is it that doctors are less willing to admit it, or that they’re less willing to do it? Probably it means UK doctors are reluctant to provide a drug with the explicit intention of ending the patient’s life,” says Professor Seale.
He speculates that may be because there is a high awareness that to do so is illegal in Britain, added to the fact that palliative care was pioneered in the UK, so doctors may be more versed on the possibilities for patients.
What doctors do not do when they want advice about patients asking for help to die is ask the General Medical Council, because it is well known such actions are illegal, says Sharon Burton, a GMC senior policy adviser.
As a regulator, the GMC’s role is to help doctors who are not specialists in palliative care to understand the ethical and legal parameters for current practice and provide a framework for making decisions.
To that end, it is consulting on new guidance for doctors on end of life treatment and care. The original guidance from 2002 needs updating, says Ms Burton, because of developments since then including government programmes to improve end of life treatment and the introduction of the Mental Capacity Act, which places legal obligations on doctors.
While the guidance speaks to the individual doctor, Ms Burton would like to hear what service providers think. As she points out, doctors can only provide the good practice expected by the GMC if the organisations they work in understand and support their ethical and legal obligations.
The Royal College of Nursing is asking its members for their views on assisted suicide in a consultation set to end next month. Now is a good time for the consultation, says RCN chief executive and general secretary Peter Carter, because the huge amount of media interest in assisted suicide is impacting on nurses.
“More and more patients are not necessarily asking how to go about this, but when they’re talking to palliative care nurses, to district nurses and so on, it’s increasingly coming into conversation.”
He expects the consultation to reveal hugely mixed views, but wants the RCN to issue guidance for nurses on how to handle and field these queries. That could include recommending the government sets up a royal commission to analyse all of the issues.
What is untenable is a situation where nurses feel they have to tell patients they cannot discuss assisted suicide. Nurses are worried they could later be seen as having encouraged or discouraged assisted suicide if they tell a patient a bit about an organisation like Dignitas, for example.
“What we need to do - depending on what happens with the consultation - is to be able to help our nurses with some guidance to field those questions,” says Mr Carter. “I don’t think giving some bureaucratic answer is particularly helpful.”
Degenerative disease charities and think tanks sit firmly on the fence. Their focus is instead on improving inadequate end of life and palliative care services; of the 500,000 people who die in England each year, the National Council for Palliative Care estimates 300,000 have palliative care needs that go unmet. Cancer patients have 95 per cent of access to specialist palliative care beds, while cancer is responsible for just 25 per cent of deaths.
“The number one issue is around improving access to palliative care services, identifying patients who can benefit from it, and then making sure they have a quality service,” says the council’s chair Mayur Lakhani.
But he questions whether end of life care has enough priority among commissioners. “Specialist practitioners are asking: when the going gets tough, will end of life care be compromised yet again?”
While the council has not taken a view on assisted suicide - it says it is a matter for Parliament to decide - the Royal College of GPs is opposed to any change in legislation and believes the focus should be on improvements in care.
Professor Lakhani adds: “As a practising GP, my personal feeling is that I’m really worried about the old, the vulnerable and the pressure that they would feel under.”
Motor Neurone Disease Association director of care development Heidi Macleod is concerned some people may choose to go to Dignitas for an assisted death because they feel they will not have good care at the end of life.
“Until specialist palliative care services and end of life services are exemplary or excellent or available to all in this country, we don’t think people have a genuine choice because those services are not available everywhere for everybody,” she says.
The Multiple Sclerosis Society has set up a working group to explore what its members think about assisted suicide, which is due to report back to its trustees in June. If there is a strong view that the society should be campaigning for a change in the law, that will have to be considered.
“It might be that if better palliative care services were available for people with MS, people’s views on the assisted dying issue might change,” says MS Society chief executive Simon Gillespie.
However, Ms Hewitt does not believe improving end of life care would remove public desire for a change in the law on assisted suicide.
“I don’t think better palliative care is an alternative to a law on assisted dying,” she says, and points to evidence that places where assisted dying is legal - such as the Netherlands, Belgium and Oregon - also have the best palliative care services.
Ms Wootton agrees. “I don’t think it’s an ‘either or’, I think it’s a ‘both and’. It’s not really about the care that you get, the palliative care, it’s about control,” she says. “[Assisted suicide] is not for everybody, but for some people - and they would be relatively few - that’s what they want.”
Mr Carter believes that in future, more and more people will get to the stage in their lives where they decide they have had a good life but realise that in a relatively short space of time they will become demented, and, for example, doubly incontinent, with the growing loss of bodily functions.
“I think more and more people will be saying, ‘I don’t want to be prolonged unnecessarily.”
But he does not think that decision should be part of the patient choice debate.
“I think we could end up conflating two things which are quite separate, even though it is about choice. I think assisted suicide is something really quite bespoke and needs its own standalone position, rather than be on a menu along with the choice of where you’re going for your hip replacement and the choice of your doctor.”
Ms Hewitt disagrees: “For me assisted dying is part and parcel of people’s general desire to have as much choice and control as it is possible to have in our lives.
“I think my generation, the baby boom generation, will increasingly insist on having a far greater degree of choice and control and support when it comes to the end of our lives.”
Final decisions: some cases of assisted suicide
Despite the legal obstacles to assisted suicide, people in the UK have overcome these and achieved their wishes. For some this has meant travelling to the Dignitas clinic in Switzerland.
Such a journey was made in January 2003 by Reg Crew, with his wife and daughter. Mr Crew was suffering from motor neurone disease, which had left him dependent on family and carers for eating, washing and dressing. He had to sleep and live in a chair and was barely able to support his own head.
Anne Turner contacted Dignitas after a failed suicide attempt and died with medical assistance one day before her 67th birthday. A retired medical doctor, she had been diagnosed with progressive supranuclear palsy, a neurological degenerative disease for which there is no treatment or cure. Walking, speaking and swallowing had become increasingly difficult and she had had a series of nasty falls.
Others have chosen an assisted suicide at home in the UK. Bank manager Sue Lawson suffered from multiple sclerosis. Her muscles had wasted away to the point where she could not walk. An unsuccessful suicide attempt prompted her to ask her brother Graham to be with her when she died. Ms Lawson took some tablets and put a plastic bag over her head while Mr Lawson held her hand. He was arrested in December 2003 for assisting her suicide but eventually did not face any charges.
Jill Anderson was put on trial for manslaughter in 2005 after her husband Paul committed suicide by taking an overdose of morphine tablets. Mr Anderson, 43, had myalgic encephalopathy (chronic fatigue syndrome) and had attempted suicide twice before. Previously his wife had called for help but this time she did as he wished and did not call anyone. When the case was brought to court the jury threw out the manslaughter charge.