Informed Consent, Capacity, and End-of-Life Care

Ethics in Medicine, Lecture 3. This lecture covers the legal and ethical framework of informed consent, the assessment and management of decision-making capacity, and ethical and legal frameworks for end-of-life care in Aotearoa New Zealand.

INFORMED CONSENT

Informed consent is both a legal requirement and an ethical imperative underpinning respect for patient autonomy. Three essential components must all be present for consent to be valid:

1. Disclosure: the clinician must provide the patient with material information — what a reasonable patient in that patient's circumstances would want to know before making a decision. The standard was clarified in Montgomery v Lanarkshire Health Board [2015] (UK Supreme Court): the Bolam test (what a reasonable doctor would disclose) was replaced with the reasonable patient standard — clinicians must disclose any risks that a reasonable person in the patient's position would be likely to attach significance to. This includes: the nature, purpose, and risks of the proposed treatment; reasonable alternatives; the likely consequences of non-treatment; risks that are rare but serious; and information specific to this patient's circumstances (e.g., risks that are especially significant given the patient's occupation or values). In Aotearoa New Zealand, the Health and Disability Commissioner's Code of Rights (Right 6) provides a similar patient-centred standard.

1. Understanding: the patient must have sufficient cognitive and linguistic capacity to comprehend the information provided. Clinicians must verify understanding — not just information delivery. Aids: plain language, interpreters, written summaries, teach-back method.

1. Voluntariness: the decision must be freely made without coercion, undue influence, or manipulation. A patient who feels pressured by family, staff, or financial circumstances is not giving fully voluntary consent.

CAPACITY AND COMPETENCE

Mental capacity is decision-specific and time-specific: a patient may have capacity to refuse a simple procedure but lack capacity for a complex treatment decision. Capacity can fluctuate — it should be re-assessed when clinical status changes. In the United Kingdom, the Mental Capacity Act 2005 (MCA) defines four functional criteria for capacity: (1) understand the information; (2) retain it long enough to make a decision; (3) weigh it up and use it in making the decision; (4) communicate the decision (by any means). A person lacks capacity only if they are unable to do one or more of these because of an impairment of the mind or brain. Presumption of capacity: all adults are presumed to have capacity unless assessment demonstrates otherwise. Supported decision-making: every effort must be made to support the person to make their own decision before concluding they lack capacity — this includes communication aids, appropriate timing, presence of trusted support persons.

In Aotearoa New Zealand the Protection of Personal and Property Rights Act 1988 (PPPR Act) provides the legal framework for decisions on behalf of adults who lack capacity: welfare guardians appointed by the Family Court can make personal care and welfare decisions; enduring power of attorney (EPA) for personal care and welfare is activated when the donor loses capacity; the Family Court may make orders in the patient's best interests.

WHEN CAPACITY IS ABSENT

Best interests standard: when an adult lacks decision-making capacity, clinicians and legal proxies must act in the patient's best interests — considering all relevant circumstances including: the patient's previously expressed wishes and values; their wellbeing; the beliefs and values that would likely influence the decision if they had capacity; and the views of carers and those interested in their welfare. The best interests standard is not the same as substituted judgement (what the patient would have decided) but should be informed by it.

Advance care plans (ACPs) and advance directives: a competent adult may make a written or verbal advance directive specifying their wishes about future medical treatment if they lose capacity. An advance directive is legally binding in NZ if it meets specified conditions: made by a competent adult; specific to the anticipated situation; not subsequently withdrawn; applicable in the circumstances. A do-not-resuscitate (DNAR/DNACPR) order represents the patient's right to refuse CPR — it must be documented, communicated to the team, and reviewed regularly. It is not equivalent to withdrawal of all care.

CONFIDENTIALITY AND EXCEPTIONS

The duty of confidentiality is a cornerstone of the therapeutic relationship. Exceptions where disclosure without consent may be justified or required: (1) Duty to warn identifiable third parties at serious risk (Tarasoff principle — originating from Tarasoff v Regents of UC, California 1976; applied in NZ context by the Health and Disability Commissioner): if a patient discloses a credible intent to harm an identifiable person, the clinician may have a duty to warn that person and/or relevant authorities. (2) Notifiable diseases: communicable diseases must be reported to public health authorities. (3) Child protection: in NZ, clinicians have a mandatory reporting obligation under the Oranga Tamariki Act 1989 when they have reasonable grounds to believe a child has been, or is likely to be, harmed, abused, or neglected. (4) Police and court disclosure: court orders and subpoenas may compel disclosure; clinicians should seek legal advice before disclosing without patient consent.

END-OF-LIFE CHOICE ACT 2019 (AOTEAROA NEW ZEALAND)

The End of Life Choice Act 2019 came into force on 7 November 2021, following a 2020 referendum in which 65.1% voted in favour. The Act provides a legal framework for assisted dying for eligible adults. Eligibility criteria: (1) New Zealand citizen or permanent resident; (2) aged 18 or over; (3) has a terminal illness likely to end their life within 6 months (12 months if neurodegenerative); (4) significant and ongoing decline in physical capability that cannot be relieved in a manner acceptable to the person; (5) experiencing unbearable suffering that cannot be relieved in a manner acceptable to the person; (6) has decision-making competence. Exclusions: a person is not eligible solely because they have a psychiatric illness, a disability, or are of advanced age. The person must initiate the request — clinicians cannot suggest assisted dying. Two attending medical practitioners must assess eligibility independently. A 10-day reflection period follows the second assessment. Conscientious objection: practitioners may decline to participate but must inform the patient of available services. Since inception: several hundred assisted deaths have occurred annually, tracking projections.

EUTHANASIA VS PALLIATIVE SEDATION

Euthanasia (voluntary active euthanasia): an intentional act by a clinician that directly causes the death of a patient at their request (e.g., administration of a lethal drug). Palliative sedation: proportionate sedation using sedating agents (e.g., midazolam) to relieve refractory symptoms (intractable pain, dyspnoea, delirium) in dying patients; the intention is symptom relief, not death. The doctrine of double effect: an action that foreseeably has both a good effect (relief of suffering) and a bad effect (hastening death) is ethically permissible if four conditions are met: (1) the act itself is not intrinsically wrong; (2) the good effect (symptom relief) is the intended outcome, not the bad effect (death); (3) the bad effect is a foreseen but unintended consequence; (4) there is proportionate reason (serious suffering that cannot otherwise be relieved). Palliative sedation at proportionate doses is ethically and legally distinct from euthanasia.

BREAKING BAD NEWS: SPIKES PROTOCOL

S — Setting: private space, sit down, minimise interruptions, interpreter present if needed. P — Perception: find out what the patient already knows or suspects. I — Invitation: ask how much information the patient wants and in what form. K — Knowledge: deliver information in clear, plain, non-jargon language in manageable stages, checking understanding. E — Empathy: acknowledge and respond to emotional reactions; silence is appropriate; avoid platitudes. S — Strategy/Summary: summarise, outline the plan, arrange follow-up. SPIKES is evidence-based: structured communication reduces patient distress, increases recall of information, and supports informed decision-making.