In Context

392 www.thelancet.com/neurology Vol 11 May 2012

UK High Court case to reignite debate over assisted deathA paralysed man has won the right to argue in court that he should be able to request lawful euthanasia, in a hearing that could have repercussions for patients with dementia. David Holmes reports.

The debate about the rights and wrongs of assisted death is never far from the headlines, and so far 2012 has been no exception. In January the current legal status of assisted death in the UK was criticised for being “inadequate and incoherent” by the Commission on Assisted Dying: a report commissioned by the thinktank Demos. Many of those criticisms will now be aired in court in the coming months, after Tony Nicklinson, who was left paralysed from the neck down after a stroke, won the right to argue his case in the High Court of England and Wales that he should have the option of requesting euthanasia: that a physician be able to end his life without fear of prosecution.

At present, encouraging or assisting another person’s suicide is illegal in the UK under the Suicide Act of 1961, but the Director of Public Prosecutions will only bring a prosecution if they consider it in the public interest to do so. In 2010, the Director of Public Prosecutions clarifi ed this position by eff ectively stating that even in

cases for which there is clear evidence that an act of assisting a suicide has taken place, the Director of Public Prosecutions will not prosecute when assistance has been provided on compassionate grounds to a person who has made a considered and auto-nomous decision to end their life.

The ruling in the Nicklinson case could have unpredictable con sequences says Dan Hyde, of London-based legal fi rm Cubism Law. Although Hyde cautions that the odds are stacked against Nicklinson, “if things go in Mr Nicklinson’s favour” he says, “then people will be drilling down into that judgement to see whether they can then apply that to their case, and if it goes against Mr Nicklinson then there could be calls for further reviews”.

One group of people with an interest in the ruling will be the increasingly vocal set of campaigners who argue that patients who have a diagnosis of dementia should be able to opt for assisted death when their disease becomes terminal. Although Nicklinson’s case is very diff erent from that of a patient with dementia—there is no question of his capacity to make an informed and free choice—what is interesting, notes Hyde, is that he is raising a relatively new issue in the argument for assisted dying; the argument of legal necessity. This argument, says Hyde, as put by Nicklinson’s legal team, “eff ectively runs that if somebody is in a tragic situation and their quality of life will be so awful and ultimately they will have an unhappy prolonged life and suff er an awful death, then the old legal principle of necessity should prevail such that a person terminating their life or assisting their suicide, in accordance with their wishes, would have the defence that they acted out of necessity”.

“That would be a very dangerous precedent indeed”, say the Care not Killing alliance, a pro-life lobby group who are opposed to euthanasia and physician-assisted suicide. “The key point to grasp about this case”, they say, “is that Nicklinson, because he is not capable of killing himself even with assistance, is not seeking assisted suicide but euthanasia”. If successful, this would mean a change in the law greater than the proposals put forward by the Commission on Assisted Dying, which advised that under strictly defi ned circumstances, patients with a terminal illness and with less than 12 months to live could be assisted to die, assuming they could comply with a number of safeguards. A similar system is in place in several other

For the Commission on Assisted Dying report see http://www.

demos.co.uk/publications/thecommissiononassisteddying

“...if things go in Mr Nicklinson’s favour...then people will be drilling down into that judgement to see whether they can then apply that to their case...“

Assisted suicide for terminally ill patients is a controversial and emotive topic

Hen

ny A

llis/

Scie

nce

Phot

o Li

brar

y

In Context

www.thelancet.com/neurology Vol 11 May 2012 393

European countries and Oregon and Washington in the USA.

At the time of its publication, the Commission on Assisted Dying—chaired by the former Lord Chancellor Charles Falconer—was criticised by Care Not Killing and other groups opposed to a change in the current law for its perceived lack of independence. This criticism was partly motivated by the fact that the report was funded by the author Sir Terry Pratchett, who has been one of the most prominent advocates for assisted suicide to be legalised since he was diagnosed with a rare early-onset form of Alzheimer’s disease.

However, the report stopped far short of recommending that people with dementia be able to request an assisted death. The Commission did concede that it was sympathetic to people who are in the early stages of dementia who might appreciate the security of knowing they could specify in a legal document (a so-called living will) the circumstances in which they would like to be able to end their life once they had lost capacity. However, it considered “that the requirement of mental capacity is an essential safeguard for assisted dying legislation; therefore the Commission does not propose any legislation that might allow non-competent people to receive assistance in ending their lives”.

“That’s the furthest any panel or committee has ever gone, and even they excluded dementia”, notes Hyde, and were it not for the Nicklinson case the issue might well have faded from the public’s attention as it has in the USA. According to Jason Karlawish, an expert on bioethics at the University of Pennsylvania, since the furore that surrounded Oregon becoming the fi rst State to legalise assisted suicide 15 years ago, the “issue has really kind of disappeared from the national conversation. And I think, as well, it has disappeared from a lot of the conversations in the professional societies. With respect to dementia it is really rarely discussed.”

Instead, says Karlawish, there has been an increasing focus on trying to apply the clinical skills of palliative care to the care of people with dementia. Palliative medicine has emerged as a specialty of its own in the USA, he explains. “There are now fellowship programmes, there are journals, there’s a specialty society, they have a board certifi cation; little of that existed 15 years ago”. As in the UK, which can claim to be a world leader in palliative care for diseases such as cancer, the conversation about assisted suicide is seen by many as an unwelcome distraction from eff orts to improve end-of-life care across the disease continuum. “I respect that argument”, says Karlawish; “I do think we need to make better progress in treating the symptoms of patients with dementia, so probably it is kind of premature to say ‘oh, and let’s also talk about assisted suicide for these patients’”.

And there are other reasons that assisted suicide more generally is off limits in the USA. “In terms of the politics of the issue, assisted suicide is deeply contentious because in the States the issue of how to care for people who are dying has been bundled into issues around abortion, contraception, stem cell research, and a variety of other medical issues that are captured in this idea of the culture of life”, explains Karlawish.

However, Karlawish does foresee a time when a discussion about assisted death for patients with dementia will become necessary. “My speculation about assisted death for persons with dementia is that I think if we begin to develop drugs that competent professionals agree aff ect the rate of change of the disease, if those kinds of drugs become available and short of a cure people will still progress, I do think that we will start to have a conversation

about at what stage these drugs should be stopped, and I think companion to that conversation will be debates about death with dignity”, he says.

In Oregon—for which annual data for Death With Dignity Act prescription recipients and deaths has been compiled since the legislation was introduced in 1997—the number of Death With Dignity Act deaths has risen slowly from 16 in 1998, to 71 in 2011, accounting for just over two deaths per 1000 total deaths. In every year the three most frequently mentioned end-of-life concerns were a decreasing ability to participate in activities that made life enjoyable, loss of autonomy, and loss of dignity.

The more that the course of a disease can be controlled with drugs, Karlawish explains, the less natural death from that disease seems. As disease-modifying therapies are developed for Alzheimer’s disease, there might, Karlawish says, “be a resurgence of the conversation amongst people along the lines of ‘I took my therapy to try to preserve my quality of life, when the therapy is no longer preserving my quality of life I want to end it and also end the disease’. There’s that sense of control I think that people will feel over something that is no longer natural, but a manipulable problem”.

David Holmes

“...Karlawish does foresee a time when a discussion about assisted death for patients with dementia will become necessary.”

For more on Oregon’s Death With Dignity Act see http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx

Living wills enable patients to dictate their health care should they later lose the capacity to make informed decisions

Tek

Imag

e/Sc

ienc

e Ph

oto

Libr

ary