OBSERVATIONS

ON THE CONTRARY Tony Delamothe One and a half truths about assisted dying Given the misinformation flying about, the new Commission on Assisted Dying has got its work cut out

Sixteen months ago I argued that the all. I’ve heard it alleged that in Belgium allow assisted dying, are rated fifth and debate on assisted dying had been anyone aged over 18 can request seventh of the 40 countries assessed. hijacked by disabled people who wanted assisted dying—and that the criteria are (Her argument should have been to live and that it should be reclaimed for very narrowly defined. rendered at least problematic by the terminally ill people who wanted to die It was therefore with some hope BMJ’s paper on Belgium’s “mutually (BMJ 2009;339:b3446). that I attended the launch of Living and reinforcing” development of assisted Since then the debate in Britain Dying Well (BMJ 2010;341:c6120), an dying and palliative care services (BMJ has moved on. The director of public organisation apparently dedicated to 2008;336:864).) prosecutions for England and , promoting evidence based debate. The argument against changing the law Keir Starmer, clarified his criteria However, my experience of the event that has gained most traction recently is for prosecuting those who help wasn’t encouraging—facts quickly took a that vulnerable people, especially those others to commit suicide. Healthcare back seat to strongly expressed opinions. who believe they are a burden to others, Professionals for Assisted Dying was set The event kicked off with the assertion of would feel under pressure to end their

up, with the explicit aim of challenging co-chair Alex Carlile, a Liberal Democrat lives. Yet recent research has concluded the current law. Two fervent opponents member of the House of Lords, that any No outfit has done that in jurisdictions where assisted

of any change in the law launched Living change of law would breach Article 2 of more to engender dying is legal there is no evidence for and Dying Well, a public policy think the European Convention on Human “and sustain the a disproportionate impact on patients tank to promote “rational, evidence- Rights (although Elizabeth Butler-Sloss, fears of“ vulnerable belonging to vulnerable groups. On based and measured debate” on the one of the organisation’s patrons and people about a the contrary, “those who received subject. Scottish MPs threw out the End previously the UK’s top female judge, change of law than physician-assisted dying . . . appeared of Life Assistance (Scotland) Bill. And an wasn’t so sure). to enjoy comparative social, economic, independent Commission on Assisted The organisation’s other co-chair educational, professional and other Dying began considering the evidence for is Ilora Finlay, professor of palliative privileges” (Journal of changing the current law. medicine. She warned that changing 2007;33:591-7). In between keeping up with these the British law would lead to “doctor No outfit has done more to engender developments I attended lectures shopping”—patients going from doctor and sustain the fears of vulnerable and debates in venues as varied as St to doctor until they found one prepared people about a change of law than Care George’s Chapel at Windsor Castle and to write the lethal prescription—because Not Killing, an alliance of palliative care the Maudsley Hospital, London. With most doctors wouldn’t want to touch doctors, disability campaigners, and me went the words of Ann McPherson, it. Her evidence for this was mid- religious groups (see Lobby Watch, p the driving force behind Healthcare decade data from . However, an 29). Its leaflet about the recent Scottish Professionals for Assisted Dying: epidemiologist employed by Oregon bill included claims that “its so-called “Alongside access to good quality end state has recently estimated that at safeguards are illusory” and “what its of life care, we believe that terminally ill, least half of Oregon’s doctors were authors see as a will become mentally competent patients should be “supportive” of Oregon’s Death and a duty to die.” What are we to make of an able to choose an assisted death, subject Dignity Act (W T Vollman, “A good death: organisation that leaflets churches with to safeguards” (BMJ 2010;341:c5498). exit strategies,” Harper’s Magazine, such alarmist claims and then laments How strong are the arguments for November 2010). A similar proportion the fact that vulnerable people go in fear refusing her organisation’s request? of doctors sampled in the Netherlands’ for their lives? Mr Starmer’s signal contribution was five year surveys says that they’ve The Commission on Assisted Dying to make it crystal clear that for doctors ended a patient’s life at the patient’s has got its work cut out. If it can produce to help their patients to die the law will request. an accurate account of assisted dying in need changing—which is why legislative In addition, Professor Finlay provided Oregon, the Netherlands, Belgium, and change has moved centre stage. The another outing for that old chestnut Switzerland, that would be an enormous experience of other jurisdictions that that support for assisted dying would contribution to the debate. If it can have liberalised their laws is obviously undermine the expansion of palliative forensically examine claims that any crucial here, yet supporters and care—as if professional attention change of law will leave vulnerable people opponents of a change of law glean directed towards end of life care was in Britain feeling they have a duty to die, so radically different lessons from these a zero sum game. For support she much the better. experiences. At worst, you wonder quoted the Economist Intelligence You can follow its hearings at http:// • bmj.com whether some claims are just made up. Unit’s recent assessment of Britain’s • bmj.com commissiononassisteddying.co.uk. Xxl dltgf dl fgld gfld fgld A few examples: I’ve heard it stated that palliative care as the best in the world, Tony Delamothe’s Tony Delamothe is deputy editor, BMJ the state of Oregon has both extensive while failing to mention that Belgium previousgld gld gld columns gfueid gld are gld [email protected] palliative care services—and none at and the Netherlands, which both availablegld gld gld online gld gld gld g Cite this as: BMJ 2010;341:c7282

28 BMJ | 1 JANUARY 2011 | VOLUME 342 OBSERVATIONS

LOBBY WATCH Jane Cassidy FROM BMJ.COM Transition and the Care Not operating framework I have a weekly teleconference with general practitioners Killing from our emergent consortiums. Over the past few weeks a lot of work has gone into developing a draft transition plan. This needs to be owned Who are they? One of the postcards used by by our board and by the future consortiums. “How can Care Not Killing in its campaign Care Not Killing is an alliance of around we have a transition plan when we don’t know what our 50 groups, including faith based and pro- What agenda do they have? functions are, consortiums don’t properly exist yet, and we life organisations, opposed to legalising Care Not Killing seeks to attract support don’t know where we are transitioning to?” retorted one or physician . from healthcare professionals, allied health GP, to which I had to suppress the reply, “You might well Its campaign director, Peter Saunders, is a services, and others opposed to euthanasia. think that; I couldn’t possibly comment.” former surgeon and chief executive of the Promoting more and better palliative care However, later in the day the operating framework was Christian Medical Fellowship. is one of the alliance’s three main aims. published and David Nicholson was appointed chief Members include the Association for The others are to influence public opinion executive of the future NHS Commissioning Board. Palliative Medicine, the UK Disabled and to ensure that existing laws against It is in reading through the framework that the real People’s Council, the Royal Association for euthanasia and assisted suicide are not scale of the transition facing primary care trusts becomes Disability and Rehabilitation (RADAR), the weakened or repealed during the lifetime of apparent. Within two years primary care trusts must: Christian Medical Fellowship, the Catholic the current parliament. 1 Establish, develop, and have authorised, as statutory Bishops’ Conference of England and Wales, It was set up in 2006 to counter the bodies, GP consortiums; the , and the Medical pro-euthanasia lobby and to combat Joel 2 By June, in many parts of the country, merge the Ethics Alliance. Joffe’s Assisted Dying for the Terminally management of two or more primary care trusts; Most recently it fought against the End of Ill Bill, which was defeated. In the same 3 Establish new financial relationships with local Life Assistance (Scotland) Bill, which was year the Society authorities to hand over millions of pounds of NHS heavily defeated in the Scottish parliament relaunched as ; and the money; in December ( BMJ 2010;341:c6986). Its retired doctor Anne Turner (see Obituary, 4 Arrange to transfer substantial public health functions postcard campaign was condemned as BMJ 2006;332:306), who had a debilitating into local authorities; “unworthy and cheap” and “a catalogue of disease, travelled to the Dignitas clinic 5 Support and engage consortiums in the establishment linguistic distortions” by the bill’s proposer, in Switzerland to end her life. Dr Turner of health and wellbeing boards; Margo MacDonald. The postcards, publicised her case in the hope of helping 6 Support engagement between the NHS commissioning distributed through churches, caused alarm win support for Lord Joffe’s bill. board and consortiums; among frail, elderly, and disabled people, 7 Begin the process of establishing new organisations to said the independent MSP. They stated How infl uential are they? deliver the commissioning support for consortiums in that, if successful, the bill would put large The alliance claims that more than 20 000 the future; numbers of sick or disabled Scottish people people signed their postcards opposing the 8 Deliver the quality, innovation, productivity, and at risk, making them and elderly people feel proposed Scottish law, making it the biggest prevention agenda; a burden. campaign response since the Scottish 9 Continue to respond to all the reporting requirements “What its authors see as a right to die will parliament was established. It also claimed a from the centre. become a duty to die,” said the postcards, major role in defeating the Joffe bill, presenting This list is daunting. My concern however is that it is all which claimed that the bill was contrary to a protest petition signed by more than 100 000 irrelevant unless we make sure that patient care is not good medical practice and its safeguards people opposing the legislation to 10 Downing damaged in all this kerfuffle. To do that, in my mind, illusory. Street. requires the whole scale engagement of our GP leadership Ms MacDonald, who has Parkinson’s It has now turned its attention to the and community, in maintaining the quality of services and disease, wants the right to end her own life, former lord chancellor Charles Falconer’s financial balance. So will they engage? I draw your attention arguing that palliative care is not always Commission on Assisted Dying ( BMJ to a particular paragraph in the operating framework: effective and that dying people should be 2010;341:c6622), though turning down an “5.10 GP consortia will have their own budgets from given choices. No doctor would have had invitation to give evidence. Funding from 2013-14. They will not be responsible for resolving PCT to take part in assisted suicide as a result Dignity in Dying’s patron, , [primary care trust] legacy debt that arose prior to 2011- 12. PCTs and clusters must ensure that through planning of the bill if doing so was against their is among their arguments against the in 2011-12 and 2012-13, all existing legacy issues are conscience or moral belief, she said. commission, which they accuse of lacking dealt with. During this period we expect developing GP Under the proposed legislation anyone independence. wanting help to end their life would have consortia to work closely with PCTs to ensure that financial control and balance is maintained to prevent PCT deficits had to submit two formal requests to a Where do they get their money from? in those years.” medical practitioner at least 15 days apart It is funded by donations from supporters, In other words, from April 2011 GPs are completely and to have these approved on psychiatric who can become members. dependent on closely collaborating with primary care trusts advice. Patients who found life intolerable unless they want to inherit a financial deficit in 2013. must have been diagnosed as terminally ill Jane Cassidy is a freelance journalist I think the next teleconference is going to be a busy one! or be permanently physically incapacitated [email protected] Martin McShane is the director of strategic planning for to such an extent that they were unable to Cite this as: BMJ 2010;341:c7284 NHS Lincolnshire live independently. See OBSERVATIONS, p 30 • Read this blog in full at bmj.com/blogs

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