Dr. John Lombard School of Law, University of Limerick Consent & our aging population: End-of-life decisions and do not attempt resuscitation orders Dr. John Lombard School of Law, University of Limerick John.Lombard@ul.ie 061 213 486

Introduction Advance healthcare directives What is an advance healthcare directive? What is the purpose of an advance directive? Are there potential challenges/problems posed by advance directives? Current legal position in Ireland Assisted Decision-Making (Capacity) Bill 2013 Legal position in England and Wales Do Not Attempt Resuscitation Orders

Advance Decision-Making What is an advance healthcare directive? “a statement made by a competent adult relating to the type and extent of medical treatments he or she would or would not want to undergo in the future should he/she be unable to express consent or dissent at that time.” Irish Council for Bioethics, ‘Is it time for Advance Healthcare Directives?’ (2007)

Advance Decision-Making What is the purpose of an advance directive? Relieve the burden placed on the patient’s family Protects the patient’s right of autonomy Raises awareness

Advance Decision-Making Are there potential challenges/problems posed by advance directives? Developments in medicine? Nature of the intervention Terminology used in the advance directive “Same” person? Best interests

The legal position in Ireland Re a Ward of Court [1996] 2 IR 79 “there is an absolute right in a competent person to refuse medical treatment even if it leads to death.” (per O’Flaherty J) “…medical treatment may be refused for other than medical reasons, or reasons most citizens would regard as rational, but the person of full age and capacity may make the decision for their own reasons.” (per Denham J)

The legal position in Ireland Re a Ward of Court [1996] 2 IR 79 I find it impossible to adapt the idea of the ‘substituted judgment’ to the circumstances of this case and, it may be, that it is only appropriate where the person has had the foresight to provide for future eventualities. That must be unusual (if it ever happens) at the present time; with increased publicity in regard to these types of cases it may get more common. (per O’Flaherty J)

The legal position in Ireland JM v The Board of Management of St Vincent’s Hospital [2003] 1 IR 321 I take the view because of her cultural background and her desire to please her husband and not offend his sensibilities, the notice party elected to refuse treatment. I am of the view that the notice party did not make a clear final decision to have, or not to have the treatment. She was preoccupied with her husband and his religion as a Jehovahs Witness rather than with whether to have the treatment and her own welfare. (per Finnegan P)

The legal position in Ireland Fitzpatrick v FK (No.2) [2009] 2 IR 7 Presumption that an adult patient has the capacity to make a decision to refuse medical treatment. “whether the patient‘s cognitive ability has been impaired to the extent that he or she does not sufficiently understand the nature, purpose and effect of the proffered treatment and the consequences of accepting or rejecting it in the context of the choices available (including any alternative treatment) at the time the decision is made.” Three-stage approach to the patient’s decision-making process adopted in Re C (Adult: refusal of medical treatment) [1994] 1 W.L.R. 290

The legal position in Ireland Fitzpatrick v FK (No.2) [2009] 2 IR 7 “what treatment is medically indicated, at the time of the decision and the risks and consequences likely to flow from the choices available to the patient in making the decision.” Importance of distinguishing between a misunderstanding of the treatment information (which may be evidence of a lack of capacity) and an irrational decision. The assessment of capacity is to have regard to the gravity of the decision.

The legal position in Ireland Fitzpatrick v FK (No.2) [2009] 2 IR 7 “the gravity of the decision, in terms of the consequences which are likely to ensue from the acceptance or rejection of the proffered treatment.”

The legal position in Ireland Governor of X Prison, 31st March 2015 the prisoner’s decision to refuse medical treatment and nutrition is valid the prisoner’s wish and direction should remain operative in the event that he becomes incapable of making a decision, and the prison is entitled to give effect to the prisoner’s wishes not to be fed or to receive medical treatment.

Assisted Decision-Making Bill Assisted Decision-Making (Capacity) Bill 2013 Lunacy Regulation (Ireland) Act 1871 Formalities must be complied with Validity and applicability of an advance directive

Assisted Decision-Making Bill Making of advance healthcare directives, s.67 A person who has attained the age of 18 years and who has capacity may make an advance healthcare directive. Refusal of treatment shall be complied with when: The directive-maker lacks capacity at the time in question Treatment to be refused is clearly identified in the directive Circumstances in which the refusal is intended to apply are clearly identified (3) Request for specific treatment is not legally binding but shall be taken into consideration. In circumstances where it is not complied with then the healthcare provider is to record the reasons for not complying with the request

Assisted Decision-Making Bill Making of advance healthcare directives, s.67 (4) An advance healthcare directive shall be in writing. (5) An advance directive should contain the name, date of birth and contact details of the directive maker; signature of the directive-maker, the date the directive-maker signed the directive, signatures of two witnesses. Possible that the advance directive is signed by someone else on behalf of the directive-maker in certain circumstances e.g. directive-maker is unable to sign the directive. Formalities in relation to the witnesses e.g. age, relationship to directive-maker.

Assisted Decision-Making Bill Making of advance healthcare directives, s.67 (8)An advance directive made outside the State which “substantially complies” with the requirements of the Bill will have the same force and effect in the State as if it were made in the State.

Assisted Decision-Making Bill Validity and applicability of advance healthcare directive, s.68 Validity - s.68(1) Not valid if the directive-maker did not make the directive voluntarily OR while they had capacity, they had done anything clearly inconsistent with the relevant decisions outlined in the directive.

Assisted Decision-Making Bill Validity and applicability of advance healthcare directive, s.68 Applicability - (2) Advance directive not applicable if the directive-maker still has capacity, the treatment in question is not materially the same as the specific treatment set out in the directive, or if the circumstances set out in the directive are absent or not materially the same (3) Not applicable to life-sustaining treatment unless there is a statement in the directive to the effect that the directive is to apply to that treatment even if his or her life is at risk.

Assisted Decision-Making Bill Validity and applicability of advance healthcare directive, s.68 (4) Not applicable to basic care (5) Where there is ambiguity about validity or applicability then the healthcare professional shall consult with the directive-maker’s designated healthcare representative or directive-maker’s family and friends; opinion of second healthcare professional; and if there is still ambiguity then it is to be resolved in favour of the preservation of life.

Assisted Decision-Making Bill Validity and applicability of advance healthcare directive, s.68 (6)(a) Where a directive-maker lacks capacity and is pregnant, but her advance healthcare directive does not specifically state whether or not she intended a specific refusal of treatment set out in the directive to apply if she were pregnant, and it is considered by the healthcare professional concerned that complying with the refusal of treatment would have a deleterious effect on the unborn, there shall be a presumption that treatment shall be provided or continued.

Assisted Decision-Making Bill Designated healthcare representative, s.70 (1) Directive-maker can designate a named individual to exercise the relevant powers (Formalities to be complied with) (4) “A designated healthcare representative acts as the agent of the directive-maker when he or she exercises the relevant powers.”

Assisted Decision-Making Bill Functions and scope of authority of designated healthcare representatives, s.71 Power to ensure that the terms of the advance healthcare directive are complied with. (b)(i) Directive-maker can confer the power to advise and interpret what the directive-maker’s will and preferences are regarding treatment as determined by the representative by reference to the relevant advance healthcare directive; (ii) the power to consent to or refuse treatment, up to and including lifesustaining treatment, based on the known will and preferences of the directive-maker as determined by the representative by reference to the relevant advance healthcare directive.

Assisted Decision-Making Bill Offences in relation to advance healthcare directives, s.73 It is an offence where a person uses fraud, coercion, or undue influence to force another person to make, alter or revoke an advance healthcare directive. (2) It is an offence to knowingly create, falsify, alter, purport to revoke, an advance healthcare directive on behalf of another person without that other person’s consent in writing when the other person has the capacity to do so.

The legal position in England Mental Capacity Act 2005, s.25 Advance decision must be both “valid” and “applicable” Validity Re E [2012] EWHC 1639 (COP) HE v A Hospital NHS Trust [2003] 2 FLR 408

The legal position in England Re E [2012] EWHC 1639 (COP) Where there is a genuine doubt or disagreement about the validity of an advance decision, the Court of Protection can make a decision…I consider that for an advance decision relating to life-sustaining treatment to be valid and applicable, there should be clear evidence establishing on the balance of probability that the maker had capacity at the relevant time….I find on the balance of probabilities that E did not have capacity at the time she signed the advance decision in October 2011. Against such an alerting background, a full, reasoned and contemporaneous assessment evidencing mental capacity to make such a momentous decision would in my view be necessary. No such assessment occurred in E's case.

The legal position in England HE v A Hospital NHS Trust [2003] 2 FLR 408 ‘It may be suggested that, even though not revoked, the advance directive has not survived some material change of circumstances’

The legal position in England Applicability Mental Capacity Act Code of Practice, para 9.43 W Healthcare NHS Trust v H [2005] 1 WLR 834

The legal position in England Mental Capacity Act Code of Practice, para 9.43 When deciding whether an advance decision applies to the proposed treatment, healthcare professionals must consider: how long ago the advance decision was made, and whether there have been changes in the patient’s personal life (for example, the person is pregnant, and this was not anticipated when they made the advance decision) that might affect the validity of the advance decision, and whether there have been developments in medical treatment that the person did not foresee (for example, new medications, treatment or therapies).

The legal position in England W Healthcare NHS Trust v H [2005] 1 WLR 834 ‘I am of the clear view that …there was not an advance directive which was sufficiently clear to amount to a direction that she preferred to be deprived of food and drink for a period of time which would lead to her death in all circumstances. There is no evidence that she was aware of the nature of this choice, or the unpleasantness or otherwise of death by starvation’ (Brooke LJ)

Failure to follow an advance directive Nature of the harm suffered? Action in negligence See Anderson v St Francis-St George Hospital Possibility of professional sanctions

Failure to follow an advance directive “An advance treatment plan has the same ethical status as a decision by a patient at the actual time of an illness and should be respected…” IMC, ‘Guide to Professional Conduct and Ethics’ (7th edn, 2009) “An advance treatment plan has the same status as a decision by a patient at the actual time of an illness and should be followed…” IMC, ‘Guide to Professional Conduct and Ethics’ (draft 8th edn)

Failure to follow an advance directive “You should respect an individual’s advance healthcare directive, if you know they have one.” Irish Nursing Board, ‘Code of Professional Conduct and Ethics’ (2014) “Nothing in this Part shall be construed as affecting any civil or criminal liability of a person that might otherwise arise under the common law or an enactment (other than this Act) as a result of a failure to comply with a valid and applicable advance healthcare directive.” Assisted Decision Making (Capacity) Act 2013, s.69(4)

Do Not Attempt Resuscitation Order Health Service Executive, ‘National Consent Policy’ (2014) Association of Anaesthetists of Great Britain and Ireland, ‘Do Not Attempt Resuscitation (DNAR) decisions in the Perioperative Period’ (2009)

Do Not Attempt Resuscitation Order Health Service Executive, ‘National Consent Policy’ (2014) General Principles

Do Not Attempt Resuscitation Order Health Service Executive, ‘National Consent Policy’ (2014) A decision whether or not to attempt CPR should be clearly and accurately documented in the individual’s healthcare record, along with how the decision was made, the date of the decision, the rationale for it, and who was involved in discussing the decision.

Do Not Attempt Resuscitation Order Association of Anaesthetists of Great Britain and Ireland

Do Not Attempt Resuscitation Order Association of Anaesthetists of Great Britain and Ireland Management of patients with DNAR decisions in the perioperative period should focus on what resuscitative measures will be embarked on rather than on what will not be done.

Do Not Attempt Resuscitation Order A review of the DNAR decision by the anaesthetist and surgeon with the patient, proxy decision maker, other doctor in charge of the patient’s care, and relatives or carers, if indicated, is essential before proceeding with surgery and anaesthesia. In an emergency, the doctor must make decisions that they view to be in the best interests of the patient using whatever information is available.

Do Not Attempt Resuscitation Order The legal position in England Re R (Adult: medical treatment) [1996] 2 FLR 99 Tracey v Cambridge University Hospital NHS Foundation Trust [2014] EWCA Civ 822

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