Ethics of organ donation and end-of-life care

Contents

Overview

Organ donation and end-of-life care sit at the intersection of medicine, law, and ethics. The ICU clinician must navigate the transition from active treatment to palliation, communicate sensitively with families, and facilitate donation where appropriate. Death in the ICU is not a failure; it is often a carefully managed process requiring the same clinical rigour as any other intervention.

Ethical Principles

The four principles of biomedical ethics (Beauchamp and Childress) provide a framework for decision-making:

Autonomy — The patient's right to make decisions about their own care, expressed through advance directives, lasting powers of attorney, or direct communication. Capacity must be assessed before autonomy can be exercised.

Beneficence — Acting in the patient's best interests. In end-of-life care, this may mean withdrawing futile treatment to prevent suffering.

Non-maleficence — Avoiding interventions that cause harm without proportionate benefit. Continuing aggressive treatment in the dying patient may breach this principle.

Justice — Fair allocation of scarce resources, including ICU beds and donor organs. Clinical decisions must not be influenced by social worth judgements.

Types of Donation

Donation after Brainstem Death (DBD) — Occurs when a patient meets the criteria for brainstem death (BSD). The patient is maintained on mechanical ventilation to preserve organ perfusion while donation proceeds. Organs are retrieved in theatre under controlled conditions with optimal perfusion, yielding the best graft quality.

Donation after Circulatory Death (DCD) — Occurs after planned withdrawal of life-sustaining treatment or unexpected cardiac arrest.

  • Controlled DCD (Maastricht category III) — The patient does not meet BSD criteria but has a decision to withdraw life-sustaining treatment. Life support is withdrawn in theatre or a designated room, and retrieval proceeds after cardiorespiratory arrest is confirmed (minimum 5-minute no-touch period in the UK).
  • Uncontrolled DCD (Maastricht categories I and II) — Following unexpected out-of-hospital or in-hospital cardiac arrest. Less common in the UK. Rapid retrieval protocols are required.

DCD kidneys and livers can function well but carry a higher rate of primary non-function and ischaemic cholangiopathy compared to DBD organs.

Consent for Donation

England moved to an opt-out (deemed consent) system in May 2020 under the Organ Donation (Deemed Consent) Act 2019, informally known as Max and Keira's Law. Adults who have not registered a decision to opt out are deemed to have consented to donation, unless they are in an excluded group (lived in England less than 12 months, lacking mental capacity to understand the opt-out system, under 18).

Family discussion remains central to the process. In practice, families are always approached, and donation is not proceeded with against strong family objection, even where deemed consent applies. The Specialist Nurse in Organ Donation (SNOD) leads these conversations, separate from the clinical team responsible for end-of-life care.

Wales has operated an opt-out system since 2015; Scotland introduced opt-out in 2021.

The Organ Donor Register records explicit opt-in and opt-out decisions.

End-of-Life Decision-Making

Withdrawal of Life-Sustaining Treatment

Withdrawal of life-sustaining treatment (WLST) is legally and ethically permissible in the UK when continued treatment is not in the patient's best interests. This is not assisted dying; it allows the underlying disease to take its natural course.

The decision rests with the clinical team, informed by the patient's previously expressed wishes and family perspectives. Family members are consultees in England and Wales — they provide information about the patient's values and preferences, but do not hold legal decision-making authority unless they have a valid Health and Welfare Lasting Power of Attorney (LPA) that covers life-sustaining treatment.

DNACPR

A do not attempt cardiopulmonary resuscitation (DNACPR) order records a clinical decision that CPR would not be attempted in the event of cardiorespiratory arrest. It does not limit other treatments. Patients must be informed of a DNACPR decision if they have capacity; family members should be informed but cannot override the clinical decision.

ReSPECT

The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) integrates DNACPR into a broader, individualised care plan. It records patient priorities and clinical recommendations for emergency care, and travels with the patient across care settings.

Mental Capacity Act 2005

The MCA governs decision-making for patients lacking capacity in England and Wales. A patient is presumed to have capacity unless assessed otherwise. When capacity is absent, decisions are made in the patient's best interests, considering their previously expressed wishes, values, and the views of those close to them.

An Advance Decision to Refuse Treatment (ADRT) is legally binding if it is valid and applicable to the clinical situation. An ADRT refusing life-sustaining treatment must be in writing, signed, and witnessed.

Ethical Conflicts

Family disagreement with WLST — The family's role is advisory, not decisional. Ongoing communication, time, and involvement of the palliative care team and clinical ethics committee can resolve most conflicts. Where disagreement persists, the Court of Protection can be approached, though this is rarely required.

Family objection to donation — Despite deemed consent, donation in the face of strong family objection is not pursued in most cases. This represents a pragmatic compromise to preserve trust in the system.

Conscientious objection — Healthcare professionals may conscientiously object to participating in specific acts but must ensure the patient receives appropriate care from a willing colleague.

Viva Questions

What is the difference between DBD and DCD, and how does this affect organ quality?

In donation after brainstem death, the patient has been confirmed brain-dead and remains on mechanical ventilation and vasopressor support, maintaining organ perfusion up to the point of surgical retrieval. This warm ischaemia time is minimal, and organ quality is generally excellent. In donation after circulatory death, there is a period of warm ischaemia between withdrawal of life support and circulatory arrest, and a further period between arrest and the start of retrieval. The warm ischaemia time is typically 10–30 minutes in controlled DCD, but this is sufficient to increase the risk of primary non-function and delayed graft function in retrieved organs, particularly for livers, which are more sensitive to warm ischaemia than kidneys. Normothermic regional perfusion techniques (NRP) — restoring circulation to abdominal organs after death — can reduce the impact of warm ischaemia and are increasingly used in DCD programmes.

How does the law support withdrawal of life-sustaining treatment in a patient lacking capacity?

Under the Mental Capacity Act 2005, when a patient lacks capacity, treatment decisions must be made in their best interests. Continued invasive treatment that is futile or causes harm without proportionate benefit is not in the patient's best interests, and withdrawal is therefore lawful. The legal authority to withdraw rests with the responsible clinician, not the family. If a valid and applicable ADRT refusing life-sustaining treatment exists, it is legally binding and must be respected. In cases of disagreement between the clinical team and family, or uncertainty about the lawfulness of withdrawal, the Court of Protection can provide a declaration. Following the withdrawal of treatment, documentation should record the decision-making process, the best interests assessment, and the discussions held with the family.

What is the role of the family in organ donation decisions under the opt-out system?

Under the deemed consent system introduced in England in 2020, adults who have not registered an opt-out decision are assumed to consent to donation. However, the law does not require clinicians to proceed with donation against the wishes of a close family member. In practice, families are always approached sensitively by the SNOD, who explores the patient's known wishes and values and discusses donation as a positive option. Where the family objects and the patient had no registered decision, donation is generally not pursued, though this may evolve as the opt-out system becomes more embedded culturally. The family's role is therefore substantial in practice, even though it is advisory rather than legal in most cases.