Dr Alex Mullock [email protected] Autonomy v Sanctity of Life The case of W v M and Others  EWHC 2443 (Fam) The legal position - Mental Capacity Act 2005 The ethical perspective Striking an appropriate balance between respecting autonomy and respecting life M’s story: February 2003 – M, an active 43-year-old woman, was struck down by viral encephalitis, suffering terrible brain damage. Once M’s condition had settled, it was believed that she was in a vegetative state (VS). After several years M’s family applied to court to have ANH withdrawn. Diagnostic tests (SMART) confirmed M was minimally conscious rather than vegetative. The Law – Best interests Airedale NHS Trust v Bland  1 All ER 821. “In VS cases, the balance falls in one direction every time – in favour of withdrawal” (Baker J in Re M) Not strictly true - Ahsan v University Hospitals Leicester NHS Trust  PIQR P19 - But the decision is generally not contentious provided everyone agrees. So people in VS might be seen to have a right to die subject to the Bland safeguards. Diagnosing the vegetative state Determining whether a person is in VS or minimally conscious has been difficult, e.g. Frenchay v S  2 All ER 403. The fate of those not in VS is determined by a very careful application of the best interests test, with evidence of consciousness being legally (and morally) significant. Section 4 Mental Capacity Act (1)In determining for the purposes of this Act what is in a person’s best interests, the person making the determination must not make it merely on the basis of – (a)the person’s age or appearance, or (b)a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests. (5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in best interests of the person concerned, be motivated by a desire to bring about his death. Section 4 MCA continued: (6)He must consider, so far as is reasonably ascertainable – The person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity), ALSO: The beliefs and values that would be likely to influence his decision if he had capacity, and other factors that he would be likely to consider if he were able to do so. Section 4 MCA continued: (7)He must take into account, if it is practicable and appropriate to consult them, the views of – (a)anyone named by the person as someone to be consulted on the matter in question or on matters of that kind, (b)anyone engaged in caring for the person or interested in his welfare, MCA Code of Practice: In setting out the requirements for working out a person’s ‘best interests’, section 4 of the Act puts the person who lacks capacity at the centre of the decision to be made... their wishes and feelings, beliefs and values should be taken fully into account – whether expressed in the past or now. But their wishes and feelings, beliefs and values will not necessarily be the deciding factor in working out their best interests. Balancing M’s interests The good aspects of M’s life balanced against the bad aspects. Pain/suffering v Pleasure/contentment ALSO, what would M want? What do her family and carers think? Life in the balance Positive things: Some contentment/ possible pleasure Clinically stable – could live for years Withdrawing ANH would cause M to suffer Respecting the sanctity of life? (and avoiding authorising killing?) Negative things: Some pain, distress and suffering The former M would not want to be kept alive in this condition M’s condition is distressing to her family The Court’s decision: Baker J was not prepared to accept that M’s “experiences are wholly, or even on balance negative” Thus, irrespective of the evidence relating to M’s past wishes and feelings, the sanctity of life should be prioritised. BUT, M should be subject to a ‘Do Not Resuscitate’ order, and; If infection occurs, the decision to treat should be left to doctors in consultation with M’s family. The ‘window of opportunity’ for allowing death? Kitzinger & Kitzinger: The level of intervention is crucial to the decision. Should the decision rest on the means of achieving death? Heywood: ‘This feeds into a much wider debate about why the law should condone certain passive inactions, but fail to sanction any positive steps to hasten a patient’s death and put an end to their pain and suffering’ Is something necessarily better than nothing? Ashwal & Cranford, Savulescu & Wilkinson: Being in MCS is worse than being in PVS because the person can experience pain and some awareness of their predicament. BUT Mason & Laurie: Allowing negative treatment decisions to lead to the death of vulnerable people is ‘euthanasia by any other name’. M’s past wishes? How should evidence falling short of a legally binding Advance Decision be treated? Donnelly: ‘Statements such as ‘I would rather die than be dependent’ may reflect a desire for reassurance, or may be a result of temporary depression or fear, and may not represent the person’s considered views on future care should they lose capacity’. But... Mason & Laurie: ‘...it is surely not in a person’s best interests to have his or her explicit or implicit preferences ignored.’ Past wishes v present experiences Dworkin has argued: The past competent person should have sovereignty over the future (present) incompetent person. Critical interests should take precedence over experiential interests. Past v present wishes BUT, what if there is little or no connectedness between the past and present person? (e.g.Dresser, Lewis) Does the present person even share the same identity with the former competent person? Is there sufficient ‘psychological continuity’? (Buchanan) Present experiential interests? Dworkin’s argument seems even weaker if the incompetent person has positive experiential interests. E.g. A person with Alzheimers might be quite happy, enjoying positive experiences in the present despite not remembering their former critical interests. Dworkin continued… Sheather: How does this apply to people in MCS? Does M have psychological continuity with her former self? Does she have sufficiently positive experiential interests to justify disregarding her past wishes? Subjective and objective views? What do you think? Baker J’s objective view of MCS: ‘It involves ‘a quality of life that many would find impossible to accept were they able to consistently express themselves with full competence’ Getting the balance right... When there is conflict between past autonomous wishes and the need to protect the lives of vulnerable people, what is the answer? If Judges are free to disregard clear evidence of past wishes in order to prioritise the sanctity of life, section 4 MCA becomes meaningless. 2 Possible Solutions: 1. Replace ‘best interests’ with ‘substituted judgment’. 2. Adopt a more robust approach to ensuring the past wishes , beliefs etc of the incompetent person are respected. Substituted Judgment? Can we trust the next of kin to make the right decision? Donnelly: ‘...it is important to remember that even close friends or family members cannot always know the past preferences or the relevant beliefs and values of the person lacking capacity’ Will they always make altruistic decisions? Substituted Judgement? What if those closest cannot agree? Terri Shiavo’s case Re G  2 FLR 528 Should people in MCS even be subject to substituted judgement? The Wendland case A new Code of Practice? Existing Code: In setting out the requirements for working out a person’s ‘best interests’, section 4 of the Act puts the person who lacks capacity at the centre of the decision to be made... their wishes and feelings, beliefs and values should be taken fully into account – whether expressed in the past or now. But their wishes and feelings, beliefs and values will not necessarily be the deciding factor in working out their best interests. A suggested amendment: ... While their wishes and feelings, beliefs and values will not necessarily be the deciding factor in working out their best interests, decision-makers should only feel free to disregard the evidence regarding past wishes and values if: There is conflicting evidence or concern about the validity of the evidence regarding past wishes. The person is enjoying a good quality of life, with demonstrably good experiences which clearly outweigh the negative experiences. Thank you Any comments or questions?