Management of a terminally ill patient and the issues that need to be addressed

End of life refers to the last 12 months of life; the terminal phase refers to the last few days or hours. Not every patient has a recognisable terminal phase — some die suddenly, as in massive pulmonary embolism or terminal haemorrhage.

Clinicians often fail to consider that the patient is dying when the condition deteriorates. Unless this possibility is actively considered, dying patients continue to receive resuscitation and are removed from their homes and admitted to hospital for their last hours and days.

Gold Standards Framework triggers to identify a patient needing a palliative approach:

The "surprise" question — would you be surprised if this patient died in the next 6–12 months?

Choice or need — the patient chooses comfort care only, or has special supportive care needs

Clinical indicators of advanced disease

Prognostication should be expressed as time, function, or unpredictability. Use ePrognosis, the Palliative Performance Scale, Karnofsky and ECOG plus clinical experience. Always give estimates as ranges — hours to days, days to weeks, weeks to months — acknowledging inherent uncertainty.

Assessment must be multidimensional — physical, psychological, social, spiritual, cultural, informational and practical needs of both patient and family, taking account of health literacy and capacity to participate.

Communication is the core intervention. Use structured frameworks — REMAP and the Serious Illness Conversation Guide. Contrary to clinician fears, serious illness conversations reduce patient anxiety and depression and do not damage the doctor–patient relationship.

A documented care plan based on the patient's wishes must be shared with family and all providers. It should account for functional and cognitive status, disease trajectory, cultural and spiritual preferences, family structure, finances, caregiver availability and home support, and must be revised as the condition changes.

Decide whether and when to refer to specialist palliative care. Not everyone needs referral; many are well cared for by their usual team. Clinicians must never say "there is nothing more that can be done" — specialist palliative care works on the principle that there is always something, however small, that can improve comfort and quality of life.

Anticipatory prescribing is essential — prescribe in advance for the symptoms likely to develop (pain, breathlessness, nausea, agitation, secretions), ensure the drugs are physically available, and establish a parenteral (subcutaneous) route before the oral route fails.

Pain — follow the WHO ladder, give opioids "by the clock" every 2–6 hours, not on demand, use sublingual, transdermal, rectal or subcutaneous routes when swallowing fails, and always co-prescribe a bowel regimen.

Breathlessness — opioids are the main therapy; add a benzodiazepine if anxiety coexists; use a cool, well-ventilated room and a fan; oxygen only if hypoxic and the patient finds it helpful.

Respiratory secretions ("death rattle") — avoid deep suctioning (uncomfortable, causes gagging); reposition for postural drainage; glycopyrrolate is preferred (does not cross the blood– brain barrier, less delirium), though clinical benefit is unproven. Stop measuring blood pressure; monitor only respiratory rate and pulse to avoid disturbing patient and family.

Terminal agitation and delirium — first look for reversible causes (pain, urinary retention, faecal impaction, drugs, hypercalcaemia, infection). Use behavioural measures — limit visitor numbers, music therapy. If these fail, use low-dose haloperidol (chlorpromazine or quetiapine if sedation is needed). Remember that many symptom-control drugs themselves cause delirium.

Deprescribe. Stop ineffective and burdensome medicines. Some patients actually improve when unnecessary drugs are stopped — showing in retrospect that the drugs, not the disease, caused the deterioration.

Basic comfort care is non-negotiable — meticulous mouth care, pressure-area care, bowel and bladder care, positioning, and a quiet, dignified environment.

Consider hydration and nutrition as separate decisions. When the patient cannot swallow, maintaining some hydration is an important comfort measure and a key adjunct to mouth care. Subcutaneous fluid infusion (hypodermoclysis) into the abdominal wall can be set up almost anywhere, has a very low complication rate, is as effective as intravenous hydration for maintenance, yet is rarely used. Avoid fluid overload, especially in cardiac decompensation.

Nutrition is emotionally charged. Dying patients have anorexia, distorted taste and disease-related cachexia. Anorexia may be the first sign of subclinical nausea — exclude hypercalcaemia, hyperglycaemia, renal failure and infection (especially urinary). Corticosteroids give only a short-lived appetite effect and cause hyperglycaemia, muscle wasting, GI erosion and bleeding, labile mood and poor sleep; megestrol has no advantage. Artificial nutrition rarely improves survival or quality of life; nasogastric feeding is uncomfortable, disfiguring and risks aspiration pneumonia.

Withholding and withdrawing an ineffective, unduly burdensome treatment are morally and legally equivalent. This permits a time-limited trial of any treatment of doubtful benefit. In almost all cases the underlying disease causes death, not the withdrawal — this must be explained to relatives and team members in advance, especially where death follows withdrawal quickly (for example, ventilator withdrawal).

Cardiopulmonary resuscitation (CPR) is a medical treatment like any other. Two separate decisions are involved:

Can CPR work physiologically? — a clinical judgement. The chance is markedly reduced in advanced terminal disease, end-stage organ failure and degenerative neurological disease; in one series no terminally ill patient survived CPR.

Is the resulting quality of life worth having? — only the patient can decide this; check first for an advance directive. A major harm of unsuccessful CPR is denying a peaceful and dignified death. Public expectations are distorted by television dramas that grossly overstate success and never show the harms. Where the team judges CPR futile, a discussion that appears to offer a choice is inappropriate and misleading — but the clinician still has a duty to ensure patient and family understand the terminal nature of the illness and that care is now aimed at comfort.

Advance care planning (ACP) — a process of discussing and recording values, goals and wishes in an advance care directive (ACD). An advance decision to refuse treatment ("living will") is legally binding where it is (i) specific to the situation, (ii) made with capacity, (iii) voluntary and informed, and (iv) not subsequently invalidated by the patient's actions. It only takes effect once capacity is lost. Values rarely change over a lifetime, but care decisions can — review the ACD yearly, on deterioration, and before admission to a care home. Where no ACD exists, decision-making reverts to the "best interests" principle, with a proxy, enduring power of attorney or durable power of attorney for health care.

Palliative (terminal) sedation should rarely be necessary. It is indicated where a patient is exhausted by complex pain, profoundly distressed after a neurological insult, or has refractory delirium. It requires consent as a therapeutic intervention; if capacity is lost, proceed via the legally appointed attorney or proxy in the patient's best interests. Use a short-acting agent such as midazolam, titrated upward in increments, with regular review so the dose can be reduced. Small anxiolytic doses of a benzodiazepine usually suffice for terminal restlessness — deliberate deep unconsciousness is not required.

Assisted dying — assisted suicide = supplying the means (for example, prescribing a lethal dose); euthanasia = deliberately administering a lethal drug. Arguments for centre on autonomy, existential distress and futility; arguments against on public safety, coercion of the vulnerable, absence of watertight safeguards, and respect for life. Diagnosis and prognosis are imprecise; 3 of 18 Oregon patients given lethal prescriptions had unrecognised, untreated depression; internal coercion ("I have a duty to die") is very hard to detect. When a patient requests it, first explore what they are actually asking — a confirmed wish to die, or a question about whether life is still worth living.

Preferred place of care and death must be asked about and planned for. In the UK, 49–100% of cancer patients wish to die at home, yet only about 26% of cancer deaths and 20% of all deaths occurred at home. Where a preference had been documented, the place of death matched it in 73%. Before discharge: arrange beds, oxygen, commodes, shower chairs, confirm who will prescribe opioids and that the pharmacy stocks them, and ensure someone is at home to receive deliveries.

Integrated care pathways (for example, the Liverpool Care Pathway) improved symptom control, communication with relatives and nurses' confidence, but were phased out in the UK after complaints — the fault lay in "tick-box" use rather than the pathway itself. Replaced by the Five Priorities for Care of the Dying Person and a personalised approach. If the patient improves, discontinue the pathway, review, and reconsider active interventions.

Family and bereavement — grief begins at diagnosis, not at death. Relatives must be told what is happening, encouraged to be involved, and allowed at the bedside — including frail elderly spouses and children. Warning signs of complicated grief: sudden or traumatic death, loss of a child, loss of a partner with an ambivalent relationship. Bereaved relatives have increased depression, cardiac events, intercurrent infection and mortality; caregivers reporting emotional stress have significantly increased mortality. Hospices provide bereavement follow-up for about one year. Offer families Byock's "Five Things" — thank you; forgive me; I forgive you; I love you; goodbye. As Cicely Saunders said, the way people die remains in the memory of those who live on.

The revised EAPC framework on palliative sedation (Palliative Medicine, 2024), developed by international Delphi consensus with 42 statements, redefines the practice:

Proportionality is now built into the definition — sedation is the monitored, proportional use of medication to reduce consciousness.

"Suffering" now explicitly includes physical, psychological and existential distress; "refractory" means untreatable (clinician view) and intolerable (patient view).

No fixed remaining life expectancy is specified as a criterion — the trigger is refractoriness and proportionality.

Hydration is decided independently of the decision to sedate.

Patient autonomy is strongly emphasised, with a stepwise pharmacological approach provided.

NICE guidance (NG31; quality standard QS144) clarifies that there is no evidence that clinically assisted hydration prolongs dying, nor that withholding it hastens death.

Assess hydration status daily and support oral drinking wherever it is safe.

Consider a therapeutic trial of clinically assisted hydration; monitor at least 12-hourly.

Continue if benefit, reduce or stop if harm (fluid overload, infusion-site pain or swelling) or if the patient no longer wants it.

"One-size-fits-all" prescribing proformas are discouraged — they contributed to the over-sedation concerns raised in the Neuberger review.

Supreme Court of India, 24 January 2023 (Common Cause v Union of India) simplified the 2018 framework: the advance medical directive no longer needs a Judicial Magistrate's countersignature — a notary or gazetted officer suffices; more than one guardian may be named; approval runs through a Primary Medical Board and a Secondary Medical Board with defined timelines.

The ISCCM–IAPC Expert Consensus and Position Statements for End-of-Life and Palliative Care in the ICU (Indian Journal of Critical Care Medicine, 2024) is now the operative Indian bedside document. It combines contemporary evidence, ethics and law, incorporates the January 2023 Supreme Court safeguards, and provides a structured process for foregoing life-sustaining treatment (FLST) based on physician prognostic assessment, patient- and family-centred shared decision-making, documented due process, and integration of palliative care into the ICU.

The MoHFW draft guidelines for withdrawal of life support in terminally ill patients (September 2024) operationalise the 2018 and 2023 Supreme Court orders, defining terminal illness and the two-tier medical board pathway.

Systematic reviews and meta-reviews (2023–2025) show that ACP reliably improves process outcomes — documentation rates, patient and surrogate engagement, and concordance between stated preferences and recorded care — but has limited or inconsistent effects on hospitalisation, health status and survival.

The field has therefore shifted from "completing a document" to iterative goals-of-care communication, surrogate preparation, and system-level implementation (trained facilitators, embedded processes, staff education), rather than one-off form-filling.

BETTER-B (2024) — mirtazapine 15–45 mg daily for 56 days did not improve severe breathlessness in COPD or ILD and caused more adverse effects and greater care use; it is not recommended.

MABEL (2025) — morphine did not improve worst breathlessness intensity in chronic breathlessness; the findings do not support routine use.

The ERS 2024 clinical practice guideline on symptom management in serious respiratory illness places non-pharmacological measures first — fan-to-face, breathing techniques, pacing, rehabilitation, psychological support — with opioids reserved for carefully selected and monitored patients.