Advance Directives Profnorchaya

Outline

Advance Directives. In Malaysia? 8th Malaysian Hospice Congress Bayview Hotel, Penang 13-15 June 2008

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Definition Underlying rationale/philosophy Selected case law Which way forward for Malaysia?

Professor Norchaya Talib Faculty of Law University of Malaya 15 June 2008 2

Definition

Definition/Form

• A written, legal document, completed and signed by a person above 18, explaining his wishes for medical care, should he be unable to make treatment decisions at a future time.

• It may include wishes to start or stop lifesustaining treatment.

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Rationale/philosophy

Forms of Advance Directives • Written (living will) • Oral • By proxy – granting a Power of Attorney to someone else

Autonomy

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(Modified) Rationale/philosophy

Selected case law • HE v A Hospital Trust [2003] Patient 24 years old, born and brought up a Muslim. Upon parents’ separation she and her mother became Jehovah's Witnesses. Congenital heart problem. In February 2001, signed AD refusing blood and primary blood components. Revocation to be in writing. In 2002, she saw a doctor and surgery was planned without the use of blood products. In 2003, patient was seriously ill. As she was leaving home in an ambulance she had said to her brother and aunt 'I don't want to die‘ Septic shock secondary to bacterial endocarditis. Required debridement .She was sedated and thereafter remained unconscious.

• Responsibility (self-accountability) • For easy medical decision-making • Utilitarian (?)

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Selected case law (cont)

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Selected case law (cont)

• patient's condition further deteriorated. Prognosis - death within 36 hours without a blood transfusion. • The patient's father applied for the court to intervene, to permit a transfusion, on the grounds that had she been conscious the patient would have consented herself in light of above facts and her engagement to be married to Muslim fiance. • Patient stopped attending Jehovah Witness congregation after engagement. • Held – treatment including blood transfusion, would be lawful

• Re AK [2001] AK is 19 1/2 years old. Motor neurone disease since 17 yrs old. Lost all limb movements, unable to speak for about 2 years. He cannot swallow and has for a long time been fed through a tube. For a while, some minimal movement in one great toe. That enabled him to operate a computer and to communicate. Then that movement was also lost. Thereafter he was able to communicate by means of a device known as an 'E transboard' which involved the painstaking spelling out of words letter by letter by a process linked to the line of sight. For past 3 months communication was via one eyelid movement, 1 mm. In weeks, to lose that and be ‘locked in’.

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Selected case law (cont)

Selected case law (cont)

• At a time when he was plainly very ill, a conclusive diagnosis of motor neurone disease had not yet been made, and he suffered a respiratory arrest. An emergency invasive procedure was carried out and a tracheostomy tube inserted. He was kept breathing by artificial ventilation. He has remained on the ventilator ever since. • That happened something like 2 years ago. This kind of invasive treatment is not generally practised in this country upon patients with motor neurone disease, the condition being irreversible. It happened in AK's case because at that stage it was not known for sure that his condition was motor neurone disease and was irreversible. It is clear that if he were not on the ventilator natural failure of breathing would have caused him to die some time ago now, at the latest about a year ago, and probably much earlier than that.

• By means of eyelid movement AK communicated that he would wish his ventilation to be discontinued 2 weeks after communication had ceased. His breathing would stop and he would die.

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Held – AK is competent to make his own decision. There is no issue of the court deciding for a patient, in the best interests of that patient.

Selected case law (cont)

Other factors to consider

• Burke v GMC [2005] Mr Burke, 45 years old. Congenital degenerative brain condition spino-cerebellar ataxia.There will come a time when the claimant will be entirely dependent on others for his care and for his very survival. He will lose the ability to swallow and will require ANH. He sought a declaration that doctors would not remove ANH from him. Held - Autonomy and the right of self-determination do not entitle the patient to insist on receiving a particular medical treatment regardless of the nature of the treatment. where a competent patient indicates his wish to be kept alive via ANH a doctor must comply with request.

• Two limits to patient autonomy. First, a patient cannot compel a doctor to provide treatment against his clinical judgment or which the doctor considers not to be in the patient's best interests. Second, where the patient is motivated by a desire to commit suicide, he cannot make the doctors complicit in that objective by determining the course of treatment provided. (Burke) • (Would AK’s situation be likened to suicide? )

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Other factors to consider

Advance directives in Malaysia? • What is it? (right/privilege) • Why? (transplant/manifestation of individual right) • Readiness of system – healthcare personnel, society, state, courts • In the right spirit – best interest of the patient

• Capacity issues – ongoing process. • What if patient makes a ‘sinful’ refusal? • AD is about right to choose how to live. • Informed consent is part of law. Is AD the inevitable follow-up?

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