Advance care planning

ADVANCE CARE PLANNING — 15 MARKS DEFINITION AND TERMINOLOGY

Advance care planning (ACP) is a process of discussing and recording a person's values, goals and wishes for future care and treatment, and documenting them in an Advance Care Directive (ACD).

Distinguish clearly: the process (ACP) — the product (ACD / advance directive / "living will") — and the proxy appointment (enduring guardian, durable power of attorney for health care).

An ACD has two components: instructional (which treatments are refused or accepted, and in which circumstances) and proxy (who decides when the person cannot).

An advance decision to refuse treatment is legally binding where valid and applicable; a statement of wishes and preferences is advisory only. A request for a particular treatment is never binding — no one can demand non-beneficial treatment.

Requirements for a valid advance decision: it must apply to the specific situation being considered; it must have been drawn up when the person had mental capacity; the decision must have been voluntary and adequately informed; the person must not have acted subsequently in a way that renders it invalid; and it must be appropriately witnessed.

An advance decision comes into effect only once the person has lost capacity. While capacity is retained, the clinician must confirm with the patient that the ACD still reflects their current wishes.

Values rarely change over a lifetime, but care preferences do. Therefore review the ACD at least yearly, whenever health deteriorates, and before admission to an aged-care home. What a person wants at 85 may differ at 97.

Factors relevant to judging validity: the person's age when the ACD was written; time elapsed since last review; the condition now being treated; and the type and burden of the proposed treatment and the consequences of giving or withholding it.

If the clinician doubts the validity of a documented ACD and the patient lacks capacity, the reason for doubt must be clearly documented and decision-making reverts to the best-interests principle.

Capacity is decision-specific and time-specific. Every effort must be made to maximise capacity before concluding a person cannot decide — correct sensory impairment, use plain language and adequate typeface, colour contrast and white space, choose the best time of day, exclude reversible contributors (delirium, depression, fear, pain, drug effects). Residents with varying degrees of dementia may still participate in many decisions.

Autonomy does not mean "I want, therefore I get". In a person with capacity it means "you may not do things to me without my permission". Even an apparently unwise refusal stands, and the clinician's duty of care does not diminish — all other care continues without prejudice.

Hierarchy of treatment decision-makers where there is no valid ACD (go to the first person who is 18 or over, has full legal capacity, and is reasonably available and willing): (1) enduring guardian with authority (2) guardian with authority (3) adult son or daughter (4) parent (5) sibling (6) primary unpaid carer (7) other person with a close personal relationship and frequent contact.

The proxy should be chosen on the basis of knowledge of the person's preferences, not merely kinship — a close friend or clergyman may know the patient's wishes better than a rarely-seen relative. Where several contenders exist, the court may decide; where no one is suitable, a public guardian may be appointed.

Surrogates are fallible. Their decisions frequently diverge from what the patient would have chosen, and they may be torn between the patient's expressed wishes and their own view of the patient's best interests. Where the proxy is uncertain, the principle of beneficence (weighing benefit against burden) guides the decision.

Do not give relatives the incorrect impression that the decision is theirs when it is not. Consultation with family provides valuable information about best interests; framing it as their decision imposes a heavy emotional burden and long-term guilt. Where families are unwilling to decide, "informed assent" — explicitly offering them the option to defer to the clinician's judgement — is the humane approach.

What to discuss: cardiopulmonary resuscitation, mechanical ventilation, ICU admission, artificial nutrition and hydration, blood transfusion, antibiotics, dialysis, transfer to an acute hospital versus comfort care; also preferred place of care and death, organ or tissue donation, and funeral, burial or cremation preferences.

Who and when: new diagnosis of a life-limiting illness; dementia (now recognised as a terminal illness); advancing frailty and multimorbidity; before elective high-risk surgery; and ideally before entry to a care home, so that uncertainty and emotional distress during a crisis are reduced.

The worst time to ask is at the moment of admission. Federal-style laws requiring that everyone entering a hospital or nursing home be offered the opportunity to make a directive produce anxiety and poorly considered decisions if done as a tick-box exercise. Ideally the discussion has already happened; admission merely revisits it.

Barriers — difficulty imagining hypothetical future health states; reluctance of patients, families and clinicians to discuss death; poor prognostic literacy; time pressure; and the mistaken assumption that people in their 90s and 100s are "ready to die" — many are not, and want careful evaluation and treatment options discussed.

Benefits — care consistent with values, less non-beneficial intervention, fewer inappropriate hospital transfers, better decisions out of hours by unfamiliar clinicians, higher likelihood of dying in the preferred place, and reduced surrogate anxiety, depression and guilt.

Care planning tools are no substitute for simple communication with the patient and clear documentation in the clinical record. The clinician must ensure the person understands the nature and consequences of the proposed treatment, obtain their decision, and communicate it to all relevant care providers.

Common Cause v. Union of India (2018) — the Supreme Court recognised the right to die with dignity as a facet of Article 21, legalised passive euthanasia, and gave legal recognition to Advance Medical Directives (AMDs). The 2018 procedure proved unworkable and was used by virtually no one.

Modification of 24 January 2023 (on the application of the Indian Society of Critical Care Medicine): the requirement for countersignature by a Judicial Magistrate First Class was removed; the AMD may now be attested before a Notary or Gazetted Officer in the presence of two witnesses; the executor may name more than one guardian or nominee; the Secondary Medical Board is nominated by the Chief District Medical Officer rather than the Collector; and the judicial role is limited to High Court adjudication of disputes. The AMD is revocable at any time before implementation.

Requirements for a valid Indian AMD: executed by an adult of sound mind, voluntarily and with full information; expressed in clear, unambiguous language; in writing; signed before two independent witnesses; attested by a Notary or Gazetted Officer; naming at least two surrogate decision-makers; and a copy given to the nominees, the family physician and the treating hospital.

MoHFW draft Guidelines for Withdrawal of Life Support in Terminally Ill Patients (September 2024) operationalise the Court's orders through a Primary Medical Board (treating doctor plus two subject experts) and a Secondary Medical Board including a nominee of the district Chief Medical Officer. Karnataka was the first state to issue implementing orders; Kerala has a state palliative-care and end-of-life care policy.

Definition: a process of discussing and recording a person's values, goals and wishes for future care, documented in an advance care directive; distinct from the proxy appointment.

Components: instructional (what treatment is refused/accepted) and proxy (who decides). Advance refusals are binding; requests are not.

Validity: made with capacity, voluntary, informed, applicable to the situation, witnessed, not subsequently contradicted.

Timing: effective only after loss of capacity; review yearly, on deterioration, and before care-home admission.

Surrogate hierarchy: enduring guardian → guardian → adult child → parent → sibling → primary unpaid carer → other close contact; choose by knowledge of the patient's wishes.

Content: CPR, ventilation, ICU, artificial nutrition/hydration, antibiotics, dialysis, hospital transfer, preferred place of care and death, organ donation.

Barriers: hypothetical future states, reluctance to discuss death, poor prognostic literacy, tick-box completion at admission.

India: Common Cause 2018 (Article 21); 2023 modification — notary/gazetted officer plus two witnesses, two nominees, two-tier medical board; MoHFW draft guidelines 2024. 3-point current update: (i) Supreme Court 2023 simplified execution of Advance Medical Directives, removing JMFC countersignature. (ii) Harish Rana v. Union of India (March 2026) — first individual passive-euthanasia order; CANH via PEG held to be medical treatment that may be withdrawn in the patient's best interests, with palliative care mandated. (iii) The field has shifted from document completion to serious-illness communication (Serious Illness Conversation Guide, ReSPECT), with surrogate outcomes now the recommended measure of benefit.