Death with dignity: the debate in England Dr Anne Slowther Associate Professor Clinical Ethics

1. Death with dignity: the debate in England Dr Anne Slowther Associate Professor Clinical Ethics

2. Outline • What does dignity mean in English health care? • End of life treatment decisions for people who lack capacity. • End of life treatment decisions for people who have capacity. • Interesting comparisons and inconsistencies in the legal approach. • Where we are now. Granada 2009

3. What is dignity? • The quality or state of being worthy of esteem or respect. • ‘Dignity in Care’ campaign by the Department of Health • To promote the concept of dignity in all aspects of health and social care. • Concept includes notions of respect, autonomy, privacy and self worth. • Is dignity the same as autonomy? • What else does it entail? Granada 2009

4. EOL decision making when capacity is absent • Early cases in English law relating to children • Focus on futility of treatment • Degree of suffering which continued treatment would entail • Early cases medical opinion held sway • More recent cases rake more account of parental views on child’s quality of life • Greater recognition that quality of life assessment is in relation to the particular child rather than a generic concept Granada 2009

5. EOL decision making when capacity is absent ‘‘It is impossible to put a mathematical or any other value on the benefits. But they are precious and real and they are the benefits, and only benefits, that M was destined to gain from his life.’ Justice Hoffman Re MB [2006] EWHC 507 (Fam) para 101-2 Granada 2009

6. EOL decision making when capacity is absent • The landmark case of Tony Bland (1993) • Young man in disaster at a football stadium • Suffered sever hypoxia and ensuing permanent vegetative state • Physicians requested declaration from the court that withdrawal of tube feeding and hydration was lawful • Parents supported request Granada 2009

7. EOL decision making when capacity is absent • The landmark case of Tony Bland (1993) • Final judgement was House of Lords • The law Lords found that: • Artificial nutrition and hydration are medical treatment • The sanctity of life principle is not absolute in English Law • Withdrawal or withholding of life sustaining treatment is lawful if continuation of treatment is not in the patient’s best interests Granada 2009

8. EOL decision making when capacity is absent ‘‘An objective assessment of Mr Bland’s best interests viewed through his eyes would in my opinion give weight to the constant invasions and humiliations to which his inert body is subject; to the desire he would naturally have to be remembered as a cheerful, carefree, gregarious teenager and not an object of pity…’ Lord Bingham Airedale NHS Trust v Bland [1993] AC 789 Granada 2009

9. EOL decision making when capacity is absent • The Mental Capacity Act 2005 • Applies to age 16 and over • A person is assumed to have capacity unless it is established otherwise • Unwise decisions do not prove lack of capacity • Capacity must be facilitated • An act done or decision made on behalf of a person who lacks capacity must be done or made in his best interests Granada 2009

10. EOL decision making when capacity is absent • The Mental Capacity Act 2005 • Decisions to withhold or withdraw life sustaining treatment can be made if it is in the patient’s best interests but must not be motivated by a desire to bring about the patient’s death. English law makes a distinction between intending to bring about death and acting in a way that death is a foreseeable consequence. But ? Bland Granada 2009

11. EOL decision making when capacity is absent • Summary of English Law • The decision must be in the person’s best interests • Best interests is wider than just pain and suffering • The decision must not be motivated by a desire to bring about death • Withdrawing and withholding treatment are classified as omissions of treatment rather than actions (an important distinction) • Artificial nutrition and hydration is medical treatment Granada 2009

12. EOL decision making when capacity exists • Contemporaneous decisions by patients • A person with capacity can refuse any treatment even if the refusal will result in her death • Treating a person who does not consent is a battery (assault) and liable to prosecution Ms B v An NHS Hospital Trust [2002] EWHC 429 (Fam) 2002) Granada 2009

13. EOL decision making when capacity exists • Contemporaneous decisions by patients • A person does not always have a right to request/demand treatment if a doctor does not consider it to be in the patient’s best interests Burke, R v General Medical Council & Ors [2005] EWCA 2005 Granada 2009

14. EOL decision making when capacity exists • Conflict between individual interests and societal interests ‘The patient’s interest consists of his right to self-determination – his right to live his own life how he wishes, even if it will damage his health or lead to his premature death. Society’s interest is in upholding the concept that all human life is sacred and that it should be preserved if at all possible. It is well established that in the ultimate the right of the individual is paramount.’ Airedale NHS Trust v Bland [1993] AC 789 p112 Granada 2009

15. Advance directives • Governed by the Mental Capacity Act 2005 • Apply to over eighteens • Must be valid and applicable • Refusals of life sustaining treatment must be • Written signed and witnessed • Must specify that it applies to life sustaining treatment Granada 2009

16. Advance directives • Note the MCA specifies advance refusals of treatment • A person does not always have a right to request/demand treatment if a doctor does not consider it to be in the patient’s best interests Burke, R v General Medical Council & Ors [2005] EWCA 2005 Granada 2009

17. Summary of the law • Capacitous choice should be respected. • But requests for treatment do not always have to be complied with • A valid advance refusal is the same as a capacitous refusal and must be respected. • If the person lacks capacity the decision must be in the person’s best interests. • Best interests must take account of the persons past and present wishes, beliefs and values (MCA section 4(6)) • Decisions must not be motivated by a desire to bring about death Granada 2009

18. Acts/Omissions distinction • Two contrasting cases • Ms B (2002) refuses life sustaining ventilation, physicians required to withdraw treatment • Diane Pretty (2001) wishes assistance to help her die, anyone providing assistance liable to prosecution under the Suicide Act of 1961 Granada 2009

20. Acts/Omissions distinction ‘It did not appear to be arbitrary for the law to reflect the importance of the right to life, by prohibiting assisted suicide while providing for a system of enforcement and adjudication which allowed due regard to be given in each particular case to the public interest in bringing a prosecution, as well as to the fair and proper requirements of retribution and deterrence.’ European Court ruling in Pretty Compare with Lord Donaldson in Bland Granada 2009

21. Acts/Omissions distinction • Deliberately performing an act that brings about death is unlawful • Omitting to perform an act (in this case withdrawing treatment is seen as an omission) mat be lawful if done in the patient’s best interests • Patients can refuse treatment with the intention that they die • Patients cannot request that a doctor performs an act that will bring about death Granada 2009

22. Suicide tourism • Since 2001 115 people have travelled from the UK to Switzerland to end their life • There have been no prosecutions of family members who accompanied them but there have been police investigations • Cases have included people from a range of ages and conditions Granada 2009

24. Suicide tourism • Challenge to the Director of Public Prosecutions to clarify the law relating to prosecution for aiding and abetting suicide in these cases Debbie Purdy 2009 • House of Lords ruled that DPP must specify when he would prosecute in such cases • September 2009 DPP issued interim guidance Granada 2009

26. Views of parliament • Assisted Dying Bill (Lord Joffe 2006) • Legalisation of physician assisted suicide • Criteria included: • Terminal illness or severe disability with no likelihood of recovery • Person is not depressed • Person has less than six months to live • Person is suffering unbearably • The person has been offered palliative care • A second physician has examined the patient Granada 2009

27. Views of parliament • Debate focussed on conflict between: • individual autonomy and the right to self determination • Risks to the vulnerable in society who may be pressurised into requesting PAS (slippery slope) • Public opinion divided • British Medical Association voted against PAS • Bill was blocked by 48 votes Granada 2009

28. Views of parliament • Amendment to Coroners' and Justice Bill to remove threat of prosecution from those who go abroad to support someone seeking death Defeated by 194 votes to 141 Granada 2009

29. Postscript • 2009 Case of woman who drank poison and doctors respected her request not to have treatment to save her life. • 2009 Survey of UK 3733 doctors regarding decisions involving 2923 patients • (Seale C Social Science and Medicine 2009; in press) • 28.9% reported decisions expected to hasten death • 7.4% reported decisions that they had to some extent intended to hasten death • No increased reporting in patients with dementia or elderly women (seen as vulnerable groups) Granada 2009

30. The story continues.... Granada 2009