Withdrawal and withholding of treatment

Contents

Ethical Framework

The ethical basis for withdrawal and withholding of life-sustaining treatment rests on four pillars:

1. Respect for Autonomy

Competent patients have the right to refuse any treatment, including life-sustaining treatment. A validly made advance decision to refuse treatment (ADRT) extends this right to patients who have lost capacity.

2. Non-Maleficence

Continuing burdensome treatment that cannot achieve a meaningful benefit is itself harmful — physically (pain, discomfort, procedural complications) and potentially an affront to dignity. The obligation not to harm includes not prolonging suffering needlessly.

3. Beneficence

Treatment is provided to benefit patients. When treatment no longer provides net benefit — either because it cannot achieve physiological goals or because the achievable goals are not in the patient's interests — the ethical obligation to treat changes to an obligation to provide comfort-focused care.

4. Justice

ICU resources are finite. Indefinitely continuing futile treatment denies access to others who might benefit. This consideration is secondary to the individual patient's best interests but is a legitimate contextual factor in resource allocation.

Legal Framework

Mental Capacity Act 2005 (England and Wales)

  • Patients who lack capacity must have decisions made in their best interests (section 4 MCA 2005)
  • Best interests is not determined solely by clinical judgment — it encompasses the patient's past and present wishes, values, and beliefs; what they would have wanted
  • Court of Protection can be asked to make declarations about treatment in cases of disagreement

Case Law

  • Bland (1993, House of Lords): established that withdrawing artificial nutrition and hydration is lawful when it is not in the patient's best interests — treatment that cannot confer benefit need not be provided
  • Re J (1992): doctors cannot be compelled to provide treatment they judge to be futile
  • Principle: the courts have consistently held that withdrawal of treatment in accordance with best interests is lawful — it is not euthanasia; the cause of death is the underlying disease

Double Effect

Providing appropriate doses of analgesics and sedatives to relieve suffering at end of life is lawful even if such drugs may secondarily hasten death, provided the intention is to relieve suffering and the dose is proportionate. This is the doctrine of double effect. It underpins the use of anticipatory opioids and midazolam in terminal care.

Euthanasia and Assisted Dying

  • Active euthanasia (deliberately causing death as the primary intention) and assisted dying remain illegal in the UK
  • Withdrawal of treatment is not euthanasia — the cause of death is the disease, not the withdrawal

Withholding vs Withdrawing — Are They Different?

Ethical Position

From an ethical perspective, withholding and withdrawing are morally equivalent. Both are decisions not to continue a treatment that would otherwise be provided. If a treatment is not in the patient's best interests, it is as appropriate to withdraw it as never to have started it. There is no ethical or legal obligation to continue treatment simply because it has been started.

Psychological Asymmetry

In practice, clinicians often find it more difficult psychologically to withdraw treatment than to withhold it — the "acts and omissions" distinction creates emotional discomfort. This psychological difference is real but should not drive clinical decision-making, as it could lead to inappropriate treatment continuation or reluctance to initiate trials of therapy.

Clinical Implication

This equivalence means that time-limited trials of treatment are both appropriate and encouraged: start treatment (e.g., a 48-hour trial of CPAP or vasopressors) with a prospective agreement that it will be withdrawn if agreed goals are not met. This avoids the perceived irreversibility of starting treatment.

Making the Decision

Clinical Assessment

The clinical team must assess:

  1. Is the current condition reversible or irreversible?
  2. What quality of life is likely if the patient survives?
  3. What are the burdens of continued treatment vs the likelihood and quality of benefit?
  4. What would the patient want?

Best Interests Decision-Making Process

Where the patient lacks capacity (most ICU patients at this stage):

  1. Establish the patient's prior wishes: advance decision to refuse treatment (ADRT), advance care plan, verbal statements to family/GP, expressed values
  2. Consult those close to the patient: family, friends, carers — not to give consent but to inform best interests; what would the patient have wanted?
  3. Consult the wider clinical team: nurses, physiotherapists, and others often have insights from bedside care
  4. IMCA (Independent Mental Capacity Advocate): if patient has no family or friends to consult, and decision involves serious medical treatment or accommodation change
  5. Senior clinician makes the decision: the responsible consultant makes the final best interests decision — it is not the family's decision, but their input is essential

When to Seek Legal Advice

  • Disagreement between clinical team and family that cannot be resolved
  • Novel or disputed cases (e.g., withdrawal of CANH from a patient in prolonged disorders of consciousness)
  • Uncertainty about the legal basis for a decision
  • Contact the Trust's legal team or apply to the Court of Protection

Process of Withdrawal of Treatment

Communication

  • Senior consultant-led discussion with family: explain the clinical situation clearly and honestly
  • Avoid medical jargon; give realistic prognosis
  • Explain that the focus is shifting from cure to comfort — not "stopping treatment" but "changing the goal of care"
  • Acknowledge emotions; give time; offer chaplaincy, social work, bereavement support

Practical Steps

  1. Document the decision clearly: clinical rationale, best interests assessment, who was consulted, who made the decision
  2. Prescribe anticipatory medications: opioids (morphine or diamorphine) for pain/respiratory distress; midazolam for anxiety/terminal agitation; glycopyrronium for secretions; antiemetics
  3. Discontinue non-essential interventions: vasopressors, inotropes, renal replacement therapy, neuromuscular blocking agents (allow awareness and any final communication)
  4. Ventilation: typically weaned progressively or removed; provide oxygen if comfortable but discontinue mandatory ventilation
  5. Comfort care only: regular mouth care, repositioning, pressure area care, appropriate analgesia
  6. Environment: ensure privacy and dignity; family at bedside; remove unnecessary monitoring alarms; quiet environment

Timing and Sedation

The patient's comfort is the priority. Sedation and analgesia should be titrated to symptom control — not to a target dose. If symptoms require doses that may hasten death, the doctrine of double effect applies: intention is comfort, not death.

Clinically Assisted Nutrition and Hydration (CANH)

CANH (artificial nutrition — NG, PEG, TPN — and IV fluid hydration) is a medical treatment — it can be withheld or withdrawn on the same basis as any other treatment if it is not in the patient's best interests. Key points:

  • Withdrawing CANH is lawful (established in Bland 1993 and subsequent cases)
  • In prolonged disorders of consciousness (PDOC — persistent vegetative state, minimally conscious state): a court declaration is no longer routinely required if the clinical team and family agree (BMA/RCP guidance 2018 and practice direction); however, complex cases may still go to Court of Protection
  • In the ICU dying patient: stopping IV fluids and NG feeding is appropriate when the patient is imminently dying — forcing fluids into a dying patient may increase respiratory secretions and discomfort without benefit

Cardiopulmonary Resuscitation (DNACPR)

DNACPR Decisions

A "do not attempt cardiopulmonary resuscitation" (DNACPR) order is a clinical decision indicating that CPR should not be performed in the event of cardiac arrest. Key principles:

  • DNACPR is a medical decision: the treating clinician does not need to obtain consent for a DNACPR decision from the patient or family, but must communicate it and take their views into account
  • A family cannot compel a clinician to perform CPR if it is clinically futile or not in the patient's best interests
  • A patient with capacity can refuse CPR — this must be respected absolutely
  • DNACPR is not a withdrawal of all treatment — it refers only to CPR; other active treatments (antibiotics, vasopressors, ventilation) continue unless separately addressed

RESPECT (Recommended Summary Plan for Emergency Care and Treatment)

Replacing local DNACPR forms: RESPECT is the UK-wide standard for advance care planning documentation. It records the patient's preferences and agreed clinical decisions across a spectrum of escalation — from full active treatment to comfort care only. ICU clinicians should ensure RESPECT documents are completed, communicated, and transferred with the patient.

Viva Questions

1. Is there a moral or legal difference between withdrawing and withholding life-sustaining treatment?

No. Both ethically and legally, withholding and withdrawing treatment are equivalent — if a treatment is not in the patient's best interests, the obligation not to provide it applies whether or not it has been started. This principle is established in English law (Re J, Bland) and endorsed by the BMA, GMC, and major medical professional bodies. The equivalence has a practical implication: clinicians should be willing to initiate time-limited trials of treatment with prospective agreement on the criteria for withdrawal, rather than avoiding starting therapy for fear that it will be impossible to stop. In practice, many clinicians feel greater psychological discomfort withdrawing a treatment than not starting it — the "acts and omissions" intuition is real but should not drive decision-making. Decisions about both withholding and withdrawing treatment must be based on best interests, documented clearly, and communicated to the clinical team and family.

2. A family insists that everything must be done for their relative in multi-organ failure who is dying. How do you handle this?

I begin with empathy: acknowledge their distress and the profound difficulty of this situation. I would ensure I am in a private setting with sufficient time, and ideally with a senior nurse and interpreter if needed. I would explore what "everything" means to the family — often this reflects fear of abandonment rather than a genuine belief that maximal intervention is possible. I would explain the clinical reality honestly but compassionately: the disease has reached a point where the body is failing despite our best efforts, and continuing or escalating interventions will cause distress without changing the outcome. I would emphasise that stopping aggressive interventions is not giving up — it is focusing everything on the patient's comfort and dignity. I would ask what their relative was like, what they valued, what they would have wanted — often families find it easier to articulate the patient's perspective than their own. If disagreement persists, I would involve a palliative care team, consider ethics advisory input, ensure the family has access to chaplaincy and psychosocial support, and if necessary escalate to the Clinical Ethics Committee or seek legal advice. But I would not continue treatment I judge to be futile and harmful simply to avoid conflict — to do so would be to act against the patient's best interests.

3. How do you document a withdrawal of treatment decision in the ICU?

Documentation must be clear, contemporaneous, and complete. I would record: the date and time of the discussion and decision; who was present (including family members, nursing staff, other clinicians); the clinical rationale — a clear and honest summary of why continued treatment is not in the patient's best interests; the outcome of the best interests assessment, including the patient's prior expressed wishes (if known), the family's account of what the patient would have wanted, and any advance directive or ADRT; the decision itself — clearly stating what treatments will be continued, changed in goal, or withdrawn; the senior clinician responsible for the decision; the anticipatory prescribing plan (opioids, midazolam, glycopyrronium); and the planned approach (e.g., ventilator weaning, cessation of vasopressors). A DNACPR order or RESPECT form should be completed and prominently displayed. Family should receive a written summary where possible. The documentation should be sufficiently detailed that any clinician reading it would understand what was decided and why — including out-of-hours.