ASSISTED DYING: SETTING THE RECORD STRAIGHT.

ASSISTED DYING: SETTING THE RECORD STRAIGHT. November 2014

CONTENTS. 3. 4. 6. 7. 9. 10. 11. Dispelling the myths Protecting the vulnerable Widespread support Safeguarding medical practice Developing palliative care Reassuring numbers References CONTACT US. Dignity in Dying, 181 Oxford St, London, W1D 2JT 020 7479 7730 info@dignityindying.org.uk www.facebook.com/ dignityindying @dignityindying 2 Assisted dying: Setting the record straight

DISPELLING THE MYTHS. An assisted dying law is needed. The current law does not work turning a blind eye to compassionate amateur assistance to die is no substitute for a safeguarded assisted dying law. The Supreme Court has warned Parliament that this issue must be addressed. Every two weeks somebody from the UK travels to Dignitas to die and for every person that does this, ten more dying people end their lives at home. The Assisted Dying Bill is based on the law in Oregon, USA, which has been operating safely for 17 years; it is not based on the laws in Belgium, the Netherlands, Luxembourg or current practice in Switzerland, which are all much wider in scope and do not contain as many safeguards. Comparison to these laws is misleading. Terminally ill people need the security and protection of a safeguarded law, they also deserve an informed debate when lawmakers are determining what end-of-life choices should be available. In order for this to be achieved some common myths need to be dispelled. 3

PROTECTING THE VULNERABLE. MYTH VULNERABLE PEOPLE WOULD BE AT RISK UNDER AN ASSISTED DYING LAW. In jurisdictions where assisted dying is legal there is no evidence that potentially vulnerable groups such as the over-85s, disabled people, people of lower socio-economic status and those with mental health problems are adversely affected. In fact, these groups are underrepresented in the figures for those who have an assisted death. 1 The Assisted Dying Bill would only allow terminally ill, mentally competent adults to have an assisted death. MYTH PEOPLE MIGHT BE PRESSURED OR COERCED INTO CHOOSING AN ASSISTED DEATH. An assisted dying law would empower and protect dying people. Under the current law dying people are potentially vulnerable as there is no investigation into the circumstances of a person s death until after they have died. Under the proposed Bill, two doctors would be required to independently assess the patient and their medical history, including exploring reasons for the request and the possibility of coercion. The patient would have to raise the request themselves and if eligible administer the life-ending medication themselves. The patient would be able to change their mind at any point. MYTH AN ASSISTED DYING LAW WOULD BE THE START OF A SLIPPERY SLOPE. The Assisted Dying Bill is based on the law in Oregon, USA. There have been no cases of abuse of the Oregon law and no calls to widen its limited scope after 17 years of safe practice. Critics quote the laws in Belgium, the Netherlands and Luxembourg but these were much wider in scope than the Assisted Dying Bill when they were introduced. Unlike the laws in the Benelux countries, the Assisted Dying Bill would not legalise voluntary euthanasia, nor would it legalise assisted suicide for people who are not terminally ill. The law you enact is the law you get. MYTH IN BELGIUM CHILDREN CAN RECEIVE ASSISTANCE TO DIE, THIS COULD HAPPEN IN THIS COUNTRY. The Assisted Dying Bill is not in any way based on the law in Belgium. Only mentally competent, terminally 4 Assisted dying: Setting the record straight

ill adults who meet all the eligibility criteria and safeguards would be able to receive assistance to die under the Assisted Dying Bill. MYTH PEOPLE IN OREGON WHO ARE DEPRESSED HAVE HAD AN ASSISTED DEATH. A level of appropriate sadness is normal in terminally ill patients. 2 An inconclusive study from Oregon found that whilst some requesting patients presented some symptoms associated with depression, the indicators used to measure depression in the study were also the side effects of many typical terminal illnesses (loss of appetite, fatigue and difficulty sleeping). 3 The safeguards of an assisted dying law mean that dying people who may have depressive disorders would be identified and referred to an appropriate specialist. Where there is any doubt about whether a person has mental capacity, assisted dying would not be granted. MYTH IF TERMINALLY ILL PEOPLE SHOULD NOT SUFFER, WHY SHOULD A CHANGE IN THE LAW NOT APPLY TO THE CHRONICALLY ILL? The Assisted Dying Bill focusses on the subjective quality of a person s death, not the quality of a person s life. Restricting an assisted dying law to people who are not expected to live longer than six months allows the upfront criteria of the law to be clearly defined, which in turn means the law can be safeguarded and vulnerable people protected. People who request assisted dying do not want to die, they want choice and control over the manner and timing of their death. Under the proposed Bill, 2 DOCTORS would be required to independently assess the patient 5

WIDESPREAD SUPPORT. MYTH POLLS SHOW THAT WHEN PEOPLE ARE PRESENTED WITH EVIDENCE, SUPPORT FOR ASSISTED DYING FALLS. Polling shows that when presented with both sides of the argument, a large majority (69%) of people continue to support assisted dying and opposition to a change in the law does not rise. 4 The opinion poll commissioned by CARE (Christian Action Research and Education) used to justify the claim that support falls only contains arguments opposing assisted dying and is therefore neither a reliable nor balanced representation of the debate. 5 MYTH RELIGIOUS PEOPLE ARE OPPOSED TO ASSISTED DYING. Only 18% of people who identify themselves as religious oppose a change in the law on assisted dying. 6 A number of senior religious figures such as the former Archbishop of Canterbury Lord Carey, and Archbishop Desmond Tutu have spoken out in support of assisted dying. MYTH DISABLED PEOPLE ARE OPPOSED TO ASSISTED DYING. 79% of disabled people support assisted dying. 7 Disabled people would not be eligible for assistance to die under the Assisted Dying Bill unless they were terminally ill and met all of the safeguards. A number of well-known disabled people such as Professor Stephen Hawking have spoken out in support of assisted dying. MYTH THE MEDICAL PROFESSION IS OPPOSED TO ASSISTED DYING. Medical opinion is divided, yet 57% of doctors feel that assisted dying legislation with upfront safeguards would be the best way to protect terminally ill patients who want to die. 8 Furthermore, 40% of GPs would want the choice of an assisted death for themselves. 9 61% of GPs think that medical bodies should adopt a position of neutrality on assisted dying. 9 The Royal College of Nursing, Royal College of Psychiatrists and Royal Society of Medicine all have a neutral position on the issue. The fact is that I have changed my mind. The old philosophical certainties have collapsed in the face of the reality of needless suffering LORD CAREY 6 Assisted dying: Setting the record straight

SAFEGUARDING MEDICAL PRACTICE. MYTH ASSISTED DYING WOULD VIOLATE THE HIPPOCRATIC OATH. The Hippocratic Oath is generally considered incompatible with contemporary medicine and has widely been replaced by the Declaration of Geneva. A conscientious objection clause in the Assisted Dying Bill means that healthcare professionals who do not want to participate in the assisted dying process can choose not to. MYTH ASSISTED DYING WOULD DAMAGE DOCTOR- PATIENT RELATIONSHIPS. The dying person would have to raise the issue of assisted dying themselves. An assisted dying law would promote detailed discussion between patient and doctor about end-of-life care and treatment choices. In Oregon, only 1 in 10 terminally ill patients who discuss assisted dying with their doctor go on to take the life-ending medication. 10 USA OREGON In Oregon, only 1 IN 10 terminally ill patients who discuss assisted dying with their doctor go on to take the life-ending medication 7

SAFEGUARDING MEDICAL PRACTICE. CONT MYTH A CHANGE IN THE LAW WOULD MAKE IT EASIER FOR DOCTORS LIKE HAROLD SHIPMAN TO KILL PATIENTS. Harold Shipman was a convicted murderer. His crimes have nothing to do with a change in the law on assisted dying. Furthermore, patients are already being assisted to die. Approximately 1,000 people die every year in the UK through illegal and unregulated voluntary euthanasia. 11 A recent survey found that 37% of doctors believe there are circumstances where some healthcare professionals in the UK are actively assisting terminally ill patients to die. 8 Legislating for this practice would provide much needed upfront safeguards that would protect patients and healthcare professionals. MYTH DOCTORS CANNOT ACCURATELY PREDICT IF SOMEONE IS EXPECTED TO DIE WITHIN 6 MONTHS. Assessing a person s life expectancy is something that is routinely asked of doctors in many areas of their work. Evidence shows that where there are errors in prognosis they are far more likely to be over-estimates of life expectancy. 12 The assumption underlying concerns 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 7 weeks between their first request and ingesting the lifeending medication. Additionally, 40% of the patients who are eligible and get the life-ending medication do not take it, rather they die from their underlying illness.. 13 8 Assisted dying: Setting the record straight

DEVELOPING PALLIATIVE CARE. MYTH AN ASSISTED DYING LAW WOULD NEGATIVELY IMPACT PALLIATIVE CARE. There is no evidence that assisted dying laws negatively impact the development of palliative care. Oregon is rated amongst the best states in the USA for the quality of palliative care. 13 90% of patients who have an assisted death in Oregon are enrolled in hospice care. 14 The Oregon Hospice Association initially opposed assisted dying, but later acknowledged that: There is no evidence that assisted dying has undermined Oregon s end-of life care or harmed the interests of vulnerable people. 15 90% Of patients who have an assisted death in Oregon are enrolled in hospice care MYTH IF PALLIATIVE CARE IS IMPROVED THERE WOULD BE NO NEED FOR ASSISTED DYING. Many dying people still suffer despite receiving the best possible palliative care. Research shows that even in hospices approximately 2% of dying people receive no relief of pain in the last three months of their life. 16 However, suffering encompasses much more than just pain. Loss of autonomy, being less able to engage in enjoyable activities and loss of dignity are the most frequently cited reasons for requesting an assisted death in Oregon, and these cannot necessarily be relieved by supportive or palliative care. MYTH A DIGNIFIED DEATH CAN BE ACHIEVED THROUGH PALLIATIVE SEDATION. Concepts of dignity are subjective. Many terminally ill people do not want to die in what they see as a medically induced coma, they want choice and control at the end of life, and to be able to communicate with loved ones as they approach their final moments. Why exit in the fog of sedation when there s the alternative of being alert and truly present with loved ones? LORD DHOLAKIA. 9

REASSURING NUMBERS. MYTH AN ASSISTED DYING LAW WOULD RESULT IN MORE PEOPLE DYING. No more people would die but fewer people would suffer. Using data from Oregon we estimate that there would be approximately 1,000 assisted deaths in England and Wales each year. 13 This equates to one death every 8 to 9 years per GP practice. MYTH THE NUMBER OF ASSISTED DEATHS HAS INCREASED RAPIDLY IN STATES IN THE USA WHERE ASSISTED DYING IS LEGAL. Claims that there have been significant increases in the number of people having an assisted death obscure the fact that when legislation is passed the number of people using the law is extremely low. In Oregon, following a small and steady increase, figures have stabilised over the past five years. In states in the USA where assisted dying is legal, assisted deaths account for approximately 0.25% of total deaths. 17 10 Assisted dying: Setting the record straight MYTH THERE IS NO NEED TO CHANGE THE LAW FOR SUCH A SMALL NUMBER OF PEOPLE. Although the number of assisted deaths would be relatively small, the number of people that would take comfort from knowing that the option is there if they need it is much higher. In Oregon, 1 in 6 dying people speak openly with their friends and family about the option of assisted dying, yet only 1 in 500 go on to request assisted dying and take the life-ending medication. 18 0.25% Have an assisted death. 1 IN 6 Dying people in Oregon speak openly to friends and family about whether assisted dying might comfort them.

REFERENCES. 1. Battin et al (2007) Legal physicianassisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in vulnerable groups J. Med. Ethics 2007;33;591-597 2. Ganzini L, Dobscha S (2003) If it isn t depression Journal of Palliative Medicine 6(6): 927-931 3. Ganzini L, Goy E, Dobscha S (2008) Prevelance of depression and anxiety in patients requesting physicians aid in dying: cross sectional survey BMJ 4. YouGov (2014) 5. ComRes (2014) 6. YouGov (2013) 7. YouGov (2013) 8. Medix (2014) 9. medeconnect (2014) 10. Oregon Health Authority Oregon s Death with Dignity Act (2014) and Tolle et al (2004) Characteristics and Proportion of Dying Oregonians Who Personally Consider Physician-Assisted Suicide The Journal of Clinical Ethics 15(2): 111-122 11. Seale C (2009) End-of-life decisions in the UK involving medical practitioners Palliative Medicine 23: 198-204 12. Christakis NA & Lamont EB (2000), Extent and determinants of error in doctors prognosis in terminally ill patients: prospective cohort study, BMJ; 320: 469-473 and Stiel et al (2010) Evaluation and comparison of two prognostic scores and the physicians estimate of survival in terminally ill patients Supportive Cancer Care 18: 43-49 13. Morrison RS, Meier DE, Augustin R, Souvanna P (2011) America s Care of Serious Illness: A state-by-state Report Card on Access to Palliative Care in our Nation s Hospitals Joint publication by Centre to Advance Palliative Care and National Palliative Care Research Centre 14. Oregon Health Authority Oregon s Death with Dignity Act (2014) 15. Jackson A/Oregon Hospice Association (2006) The reality of assisted dying in Oregon APPG on Compassion in Dying, House of Lords, 2006 16. Office of National Statistics. (2013, July). National Bereavement Survey VOICES 2012. Q31 Retrieved from http://www. ons.gov.uk/ons/publications/re-referencetables.html?edition=tcm%3a77-313468 17. Oregon Health Authority Oregon s Death with Dignity Act (2014) and Washington State Department of Health Death with Dignity Act Report (2014) 18. Tolle et al (2004) Characteristics and Proportion of Dying Oregonians Who Personally Consider Physician-Assisted Suicide The Journal of Clinical Ethics 15(2): 111-122 11

CONTACT US. Dignity in Dying, 181 Oxford St, London, W1D 2JT 020 7479 7730 info@dignityindying.org.uk www.facebook.com/dignityindying @dignityindying