ASSISTED DYING: SETTING THE RECORD STRAIGHT.

August 2015 DISPELLING THE MYTHS.

year over 300 terminally ill people end their own lives at home, often 82% in distressing circumstances,3 and OF THE GENERAL around 1,000 lives per year are ended by doctors illegally at the PUBLIC patient’s request.4

Allowing these practices to continue, unregulated and behind closed doors, is no substitute for 79% a safeguarded assisted dying law. OF RELIGIOUS The Supreme Court has warned Parliament to address this issue and PEOPLE a majority of Peers in the House of Lords have voted in support of Lord Falconer’s Assisted Dying Bill.

The Assisted Dying Bill builds on the 86% law in , USA, which has been OF DISABLED operating safely since 1997. It is not PEOPLE based on the laws in Belgium or the Netherlands, which were much wider in scope from the outset and contain SUPPORT THE fewer safeguards than the Assisted CHOICE OF Dying Bill; comparison to these laws ASSISTED DYING is misleading. FOR TERMINALLY Terminally ill people deserve the 1 compassion and protection of a ILL PEOPLE . safeguarded law. They also deserve an informed, evidence-based debate n assisted dying law is when lawmakers are determining needed. The current law what end-of-life choices should be Adoes not work: every two available to them. In order for this to weeks somebody from Britain be achieved, some common myths travels to Dignitas to die,2 every must be dispelled.

2 Assisted dying: Setting the record straight VULNERABLE PEOPLE.

MYTH POTENTIALLY that this can reflect patients’ own VULNERABLE PEOPLE, feelings, rather than how caregivers SUCH AS OLDER PEOPLE view them. Caregivers find positive OR DISABLED PEOPLE, meaning in caring for terminally ill WILL BE AT RISK UNDER family members who have requested AN ASSISTED DYING LAW. assisted dying.7 Where assisted dying is legal there is no evidence that potentially Under the proposed Bill, two doctors vulnerable groups such as the would be required to independently over-85s, disabled people, people assess the person making a request, of lower socio-economic status and including exploring the reasoning those with mental health problems and motivations for a request. The are adversely affected.5 The current person would be able to change their law does not contain any safeguards mind at any point. to protect vulnerable people who seek assistance to die. MYTH AN ASSISTED DYING LAW WOULD BE THE START MYTH IN OREGON AND OF A SLIPPERY SLOPE. , WHERE In Oregon, where an assisted dying ASSISTED DYING IS LEGAL, law has operated safely since 1997, “FEELING A BURDEN” IS there have been no cases of abuse REGULARLY CITED AS A of the law and no widening of its REASON FOR A REQUEST. initial, limited scope. Assisted deaths Patients who request assisted dying in Oregon account for just 0.3% of in Oregon and Washington give total deaths.6 several reasons for their choice - burden falls low on the list. The Assisted Dying Bill contains additional safeguards to the Oregon The key reasons for requesting law, including the oversight of a High assistance to die in both States are Court judge and a clause which loss of autonomy (c.90%), being would allow the Act to be reviewed at less able to engage in enjoyable a later date. activities (c.88%) and loss of dignity (c.79%).6 Burden is less frequently Those opposed to assisted dying cited (40% in Oregon and 59% in often cite the wider eligibility criteria Washington), with research showing of the laws operating in Belgium and

www.dignityindying.org.uk 3 the Netherlands, but these have depression (weight loss, fatigue, always been much wider in scope loss of appetite etc.), there was no than the Assisted Dying Bill and do evidence to suggest these people not therefore represent a slippery had depression.9 slope. The law you enact is the law you get. MYTH ASSISTED DYING IS SUICIDE, LEGISLATING FOR MYTH MENTAL CAPACITY IT SENDS A DANGEROUS CANNOT BE RELIABLY MESSAGE TO SOCIETY AS ASSESSED. A WHOLE. Doctors routinely assess mental capacity as part of their day-to-day I am not suicidal. I do not want to duties. Determining mental capacity die. But I am dying. And I want to die already plays a key role in end-of-life on my own terms. decision making, such as the right to refuse treatment. Brittany Maynard, who had an assisted death under Oregon’s The Assisted Dying Bill ensures that Death with Dignity Act in November if either assessing doctor had doubts 2014, aged 29. about a person’s capacity to request an assisted death then they would Dying people who want to control make a referral to an appropriately the manner and timing of their death trained specialist. If they lacked are not suicidal. During Committee capacity they would not be eligible stage of Lord Falconer’s Assisted for assistance. The Royal College Dying Bill, peers voted 2 to 1 against of Psychiatrists is neutral towards a an amendment which inserted the change in the law on assisted dying. word suicide into the wording of the Bill, on the grounds that it did not MYTH IN OREGON, PEOPLE accurately reflect the assisted dying WITH DEPRESSION HAVE process. HAD AN ASSISTED DEATH. A level of sadness is normal in terminally ill patients.8 Research from Oregon found that whilst some requesting patients presented some of the symptoms associated with

4 Assisted dying: Setting the record straight PUBLIC SUPPORT.

MYTH THE GENERAL MYTH RELIGIOUS PEOPLE PUBLIC IS DIVIDED ON THE ARE OPPOSED TO ISSUE OF ASSISTED DYING. ASSISTED DYING. The general public overwhelmingly 79% of religious people support a supports a change in the law on change in the law on assisted dying.1 assisted dying. The largest poll ever A number of senior religious figures on this issue shows that 82% of the such as the former Archbishop public back the proposals set out in of Canterbury Lord Carey and the Assisted Dying Bill.1 Archbishop Desmond Tutu have spoken out in support of the choice Polling shows that when presented of assisted dying. with both sides of the argument, opposition to a change in the law MYTH DISABLED PEOPLE does not rise.10 ARE OPPOSED TO ASSISTED DYING. The Ministry of Justice has 86% of disabled people support acknowledged “the substantial assisted dying.1 Disabled people majority of people agree the law are not eligible for assistance to die should be changed”, noting that under the Assisted Dying Bill unless “there have been several other they are terminally ill and meet surveys of varied statistical merit all of the other eligibility criteria. but none of these has reported a A number of well-known disabled majority opposed to change.”11 people including Professor Stephen Hawking have spoken out in support of assisted dying legislation.

www.dignityindying.org.uk 5 MYTH THE MEDICAL MYTH TERMINALLY ILL PROFESSION IS OPPOSED PEOPLE DO NOT WANT TO ASSISTED DYING. THE CHOICE OF ASSISTED 57% of doctors feel that assisted DYING. dying legislation with upfront An in-depth study to examine the safeguards would be the best way views of those who were ‘close to to protect terminally ill patients death’ found overall support in favour who want to die and 37% of of a change in law on assisted doctors believe there are already dying,15 and research with people circumstances where healthcare with motor neurone disease found professionals in the UK are actively that the choice of assisted dying assisting terminally ill patients to would bring reassurance, even for die.12 Furthermore, 40% of GPs those that did not consider it an would want the choice of assisted option for themselves.16 dying for themselves.13

The BMA has never surveyed its membership on assisted dying; it has no remit to speak on behalf of its members on this issue. In fact, 56% of GPs think that medical bodies should adopt a position of neutrality on assisted dying.14 57% The Royal College of Nursing, Of doctors feel assisted Royal College of Psychiatrists, dying legislation is the Royal Pharmaceutical Society and best way to protect Royal Society of Medicine all have a terminally ill people who neutral position on the issue. want to die.

6 Assisted dying: Setting the record straight MEDICAL PRACTICE.

MYTH IF ASSISTED DYING MYTH ASSISTED DYING IS WERE LEGALISED, IT CONTRARY TO MEDICAL WOULD BE SAFER TO ETHICS AND WOULD REMOVE IT FROM MEDICAL VIOLATE THE HIPPOCRATIC PRACTICE SO THAT OATH. DOCTORS WOULD NOT BE The Hippocratic Oath is generally REQUIRED TO KILL THEIR considered incompatible with PATIENTS. contemporary medicine and has If a request for assisted dying is widely been replaced by the approved, the dying person would Declaration of Geneva. In contrast administer the life-ending medication to the claim that assisted dying is themselves. To use the word “kill” is a violation of the Hippocratic Oath, therefore inappropriate. many healthcare professionals actually consider being prevented Doctors are already required to from respecting the wishes of dying make complex decisions about people in conflict with their medical patients’ end-of-life care; this ethics. includes discontinuing futile treatment and respecting patients’ A conscientious objection clause requests to refuse treatment, both of in the Assisted Dying Bill means which may hasten death. Diagnosing those who did not want to consider a a , assessing mental request could choose not to. capacity and providing palliative 57% support and information all require MYTH DOCTORS ARE NOT the expertise of a suitably qualified WILLING TO PARTICIPATE professional. IN ASSISTED DYING, SO A LAW WOULD NOT BE ABLE Evidence from jurisdictions where TO WORK IN PRACTICE. assisted dying is legal shows that 51% of GPs would be willing to play the model proposed in the Assisted some role in the assisted dying Dying Bill works. Doctors are process, this equates to over 18,000 best placed to effectively assess GPs.14 Based on data from Oregon a request, removing them from we can predict that there would be the process would undermine the approximately 1,200 assisted deaths safeguards of the Bill. each year in England in .

www.dignityindying.org.uk 7 MYTH ASSISTED DYING MYTH DOCTORS CANNOT WOULD DAMAGE THE ACCURATELY PREDICT IF DOCTOR-PATIENT SOMEONE IS EXPECTED TO RELATIONSHIP. DIE WITHIN 6 MONTHS 87% of people say an assisted dying Many doctors are experienced in law would actually increase or have assessing life expectancy. Evidence no effect on their trust in doctors.1 shows that errors in prognosis are more likely to be over-estimates In Oregon, only 1 in 10 patients who of life expectancy.18 Data from the discuss assisted dying with their Oregon Health Authority tells us that doctor go on to take the life-ending only 7% of patients who receive the medication.17 Changing the law life-ending medication live for more would allow a dying person to have than six months after being assessed honest, transparent conversations as eligible for assistance. On average with their care team about their fears these patients outlive their prognosis and wishes for the end of their life. by two months.19

The assumption underlying concerns OREGON around prognosis is that patients are eager to die. This is not true, illustrated by the fact that in Oregon assisted dying patients wait an average of seven weeks between their first request and ingesting the life-ending medication. Additionally, around a third of patients who receive assisted dying do not take the life- ending medication, rather they die from their underlying illness.6 In Oregon, only 1 IN 10 Terminally ill patients who discuss assisted dying with their doctor go on to take the life-ending medication

8 Assisted dying: Setting the record straight PALLIATIVE CARE.

MYTH AN ASSISTED DYING MYTH IF PALLIATIVE CARE LAW WOULD NEGATIVELY IS IMPROVED THERE WILL IMPACT PALLIATIVE CARE. BE NO NEED FOR ASSISTED Oregon, Washington and Vermont, DYING. which all have assisted dying Research shows that even in legislation, are rated amongst the hospices approximately 2% of dying best states in the USA for the quality people receive no relief of their of palliative care. 90% of patients symptoms in the last three months of who have an assisted death in their life.21 The Catholic Church for Oregon are enrolled in hospice England and Wales acknowledges care.6 that only around 95% of pain can be controlled by specialist care.22 The European Association of Palliative Medicine stated, after Suffering encompasses much more reviewing available evidence, than just pain; loss of autonomy, that: “The idea that legalisation being less able to engage in of and/or assisted enjoyable activities and loss of suicide might obstruct or halt dignity can deeply affect those at OREGON palliative care development thus the end of their lives, but cannot seems unwarranted and is only necessarily be relieved by palliative expressed in commentaries rather care. than demonstrated by empirical evidence.” 20 MYTH A DIGNIFIED DEATH CAN BE ACHIEVED THROUGH . Not all terminally ill people view palliative sedation, which is essentially a medically-induced coma, as a satisfactory alternative to 90% assisted dying. Many dying people want choice and control at the end of Of patients who have an life, and to be able to communicate assisted death in Oregon with loved ones as they approach are enrolled in hospice care their final moments..

www.dignityindying.org.uk 9 NUMBERS.

MYTH THE NUMBER OF MYTH THERE IS NO NEED ASSISTED DEATHS HAS TO CHANGE THE LAW FOR INCREASED RAPIDLY SUCH A SMALL NUMBER IN STATES IN THE USA OF PEOPLE. WHERE ASSISTED DYING IS Although the number of assisted LEGAL. deaths would be relatively small, the Claims that there have been number of people who would take significant increases in the number comfort from knowing the option is of people having an assisted death there if they need it is much higher. obscure the fact that when legislation In Oregon 1 in 6 dying people speak is passed the number of people openly with their friends and family using the law is extremely low. In about the option of assisted dying, states in the USA where assisted yet only 1 in 350 go on to request dying is legal, assisted deaths assisted dying and take the life- account for approximately 0.3% of ending medication.24 The population total deaths. Using this figure we as a whole is reassured that can estimate that there would be safeguarded legislation is in place approximately 1,200 assisted deaths should they need it. in England and Wales each year. This equates to just one death every 7 years per GP practice.23

No more people would die but fewer people would suffer at the end of 1 IN 6 Dying people in Oregon speak openly their lives. to friends and family about whether 1 IN 350 assisted dying might comfort them. Go on to request assisted dying and take the life-ending medication. Dying people who People who have an speak openly to assisted death their friends and family about assisted dying Dying people in Oregon

10 Assisted dying: Setting the record straight REFERENCES.

1. Populus (2015) 16. Cooney, Hundt, Goodall, Weaver 2. Dignitas, suicides per year and residence, (2012) Choices and control when you 1998-2014 [http://www.dignitas.ch/ have a life-shortening illness [http:// images/stories/pdf/statistik-ftb-jahr- www.mndassociation.org/wp-content/ wohnsitz-1998-2014.pdf] uploads/2015/02/Choices%20and%20 3. FOI request (2014) [http://www. control%20FINAL.pdf] dignityindying.org.uk/wp-content/ 17. Oregon Health Authority Oregon’s Death uploads/2014/10/FOI_report_A_Hidden_ with Dignity Act (2014) and Tolle et al (2004) Problem.pdf] Characteristics and Proportion of Dying 4. Seale C (2009) End-of-life decisions in the Oregonians Who Personally Consider UK involving medical practitioners Palliative Physician- The Journal of Medicine 23: 198-204 Clinical Ethics 15(2): 111-122 5. Battin et al (2007) Legal physician-assisted 18. Christakis NA & Lamont EB, “Extent and dying in Oregon and the Netherlands: determinants of error in doctors’ prognosis evidence concerning the impact on patients in terminally ill patients: prospective cohort in “vulnerable” groups J. Med. Ethics study”, BMJ 2000; 320: 469-473 and Stiel 2007;33;591-597 et al (2010) Evaluation and comparison of 6. Oregon Health Authority Oregon’s Death with two prognostic scores and the physicians Dignity Act (2014) and Washington State estimate of survival in terminally ill patients Department of Health Death with Dignity Act Supportive Cancer Care 18: 43-49 Report (2014) 19. Oregon Health Authority, Oregon’s DWDA 7. Ganzini, L., Harvath, TA., Jackson., Goy, 2008-2014 special request data, July 2015 ER., Miller, LL., and Delorit, MA (2002) 20. Chambaere et al. (2011) Palliative care “Experiences of Oregon nurses and social development in countries with a euthanasia workers with hospice patients who requested law [http://www.rpcu.qc.ca/pdf/documents/ assistance with suicide”, New England PalliativeCareDevInCWAEuthanasiaLaw.pdf] Journal of Medicine 347: 582-88 21. Office of National Statistics. (2013, 8. Ganzini L, Dobscha S (2003) If it isn’t July). National Bereavement Survey depression… Journal of Palliative Medicine VOICES 2012. Q31 [http://www.ons.gov. 6(6): 927-931 uk/ons/publications/re-reference-tables. 9. Ganzini L, Goy E, Dobscha S (2008) html?edition=tcm%3A77-313468] Prevelance of depression and anxiety in 22. The Catholic Church in England and Wales patients requesting physicians’ aid in dying: (2015) Questions and answers on assisted cross sectional survey BMJ suicide [http://www.catholic-ew.org.uk/Home/ 10. YouGov (2014) Featured/Assisted-Dying-Bill/Q-A] 11. Correspondence from the Ministry of Justice 23. These estimated figures apply to England (June, 2015) and Wales and have been calculated based 12. Medix (2014) on research from Oregon (Tolle et al, 2004) 13. medeConnect (2014) and the Death with Dignity Act Annual Report 14. medeConnect (2015) (2014), mortality data from the ONS (2014) 15. Chapple, A Ziebland, S McPherson, A and GP practice data from the BMA (2014). Herxheimer A (2006) What people close to 24. Tolle et al (2004) Characteristics and death say about euthanasia and assisted Proportion of Dying Oregonians Who suicide: a qualitative study Journal of Medical Personally Consider Physician-Assisted Ethics 32;706-710 Suicide The Journal of Clinical Ethics 15(2): 111-122

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