End-of-life care issues

END-OF-LIFE CARE ISSUES — 15 MARKS DEFINITIONS AND SCOPE

End of life refers to the last 12 months of life; terminal care refers to the last few days or hours. For many people with a life-limiting illness there is a period of hours to days when it is clear they are dying and require care appropriate to the terminal phase — but not all patients have a recognisable terminal phase, and some die suddenly (massive pulmonary embolus, terminal haemorrhage).

Palliative care is not confined to cancer. It is appropriate for chronic organ failure, frailty and dementia, and the best outcomes occur when it is commenced early, alongside disease-directed treatment. RECOGNISING THE PATIENT APPROACHING THE END OF LIFE

Gold Standards Framework (2016) — three triggers for a palliative approach: (i) the Surprise Question — "Would you be surprised if this patient were to die in the next 6–12 months?" (ii) Choice or need — the patient with advanced disease chooses comfort care only, or has a special need for supportive/palliative care; (iii) Clinical indicators of advanced disease for specific conditions. Note that diabetes is not included, despite being a leading cause of death and suffering that could be managed with a palliative approach.

Failure to recognise dying is the central clinical failure. Unless the possibility is actively considered when a patient deteriorates, dying patients continue to receive resuscitation and are moved out of their homes and admitted to hospital for their last hours and days.

When to involve specialist palliative care teams — refractory or complex symptoms, complex psychosocial, spiritual or family distress, requests for hastened death, and difficult ethical decisions. Not everyone benefits from referral; many can be cared for well by their usual doctors and nurses at home or as inpatients.

Decisions that certain interventions ought not to be considered for a particular resident can and should be documented in advance — for example, any investigation or treatment requiring hospital admission, CPR, ventilation, or artificial nutrition in advanced dementia — while others, such as antibiotics for a urinary tract infection, may remain appropriate for almost all residents.

Ideally an individual entering a care home has an ACD before admission, to reduce uncertainty and emotional distress for everyone during a crisis.

Out-of-hours risk: where usual care services operate only during the working week (in the UK, only about 24% of the whole week), a deteriorating patient will very likely be reviewed by a clinician unfamiliar with them. Without a clearly documented future-care plan, care may be inappropriately escalated or restricted. A crisis is not the time for an unfamiliar nurse or doctor to open a complex discussion.

Withholding and withdrawing are ethically and legally equivalent. There is no obligation to provide treatment that is non-beneficial; decisions rest on the balance of benefits, burdens and risks for that individual.

CPR — survival after in-hospital arrest in the terminally ill is very poor, and television portrayal grossly misleads the public about outcomes. Members of the public who perform CPR are hailed as heroes, but no one asks whether the person had an advance directive; those resuscitated in public may not die free from suffering or with dignity. A DNACPR decision restricts nothing else; it must be documented, communicated and reviewed.

Artificial hydration — nutrition and hydration must be considered separately. People can live for a time with almost no nutrition, but hydration is essential because renal failure and dehydration develop rapidly. Where a patient cannot swallow, maintaining some hydration is an important comfort measure. Subcutaneous fluid (hypodermoclysis) can be set up in almost any environment through an abdominal-wall needle, carries very low complication risk, and is as effective as intravenous hydration for long-term maintenance — yet is rarely used. Avoid fluid overload, especially with cardiac decompensation. Hydration is an adjunct to, not a substitute for, meticulous mouth care.

Nutrition is an emotionally charged area. Families feel an overwhelming desire to provide food. Dying patients have no appetite, distorted taste and disease-related cachexia. Anorexia may be the first sign of subclinical nausea — therefore exclude hypercalcaemia, hyperglycaemia, renal failure and infection (particularly urinary).

Corticosteroids stimulate appetite only briefly and cause hyperglycaemia, muscle wasting, gastrointestinal erosion and bleeding, emotional lability and impaired sleep; frank steroid psychosis is rare but mood disturbance is common. Megestrol acetate has no advantage over glucocorticoids.

Nasogastric feeding is very uncomfortable, irritating and disfiguring, and carries a significant risk of aspiration pneumonia; PEG feeding in advanced dementia does not improve survival, nutrition, pressure-ulcer healing or quality of life. Any form of artificial nutrition needs very careful consideration because in most such patients it is unlikely to benefit survival or quality of life.

Integrated care pathways — the Liverpool Care Pathway for the Dying Patient (LCP) was the UK standard and was adopted or adapted in many countries including Australia. It was withdrawn in the UK following the Neuberger review and replaced by the Five Priorities for Care of the Dying Person (Leadership Alliance, 2014): Recognise — Communicate — Involve — Support — Plan and do.

If the patient improves or recovers, the pathway must be discontinued, the situation reviewed, and the need to recommence interventions considered. One important reason patients improve is that unnecessary medicines were stopped — in retrospect it may be clear that the drugs, not the disease, caused the deterioration.

Anticipatory ("just in case") prescribing with subcutaneous PRN medication and a syringe driver: an opioid (morphine; oxycodone or fentanyl if renal impairment) for pain and breathlessness; midazolam for restlessness, anxiety and seizures; haloperidol or levomepromazine for nausea and delirium; an antimuscarinic (hyoscine butylbromide or glycopyrronium) for respiratory secretions. Stop non-essential drugs and convert essential ones to the subcutaneous route.

Excessive secretions and cough — rather than subject the patient to repeated suctioning, treat pharmacologically with an anticholinergic; reposition; explain the "death rattle" to the family, who are usually more distressed by it than the patient. Cough: treat the cause (diuretics in heart failure, antibiotics if infection), then central suppression with dextromethorphan or codeine linctus.

Terminal restlessness — always exclude reversible causes first: pain, urinary retention, faecal impaction, hypoxia, hypercalcaemia, hypoglycaemia, opioid toxicity, and withdrawal from nicotine, alcohol or benzodiazepines.

Psychiatric symptoms at the end of life — anxiety, depression, hallucinations and delirium are common and distress families more than patients. If the patient is not troubled by the symptom (for example, pleasant hallucinations), no treatment is required; support the family instead. Treatment of one symptom may create another — opioids for pain may cause delirium, in which case switch opioid or route.

Sedation at the end of life should rarely be necessary. It may be required where a patient is exhausted by complex pain or profoundly distressed following a neurological insult. Because it is a therapeutic intervention it requires consent; if the patient lacks capacity a short period of sedation (for example, to control difficult delirium) may be in their best interests, decided with the person holding power of attorney or, failing that, the preferred proxy and other interested parties.

Titrate short-acting agents such as midazolam in increments to the desired effect, review regularly, and lower the dose again at the agreed time. In the last days and hours patients may become restless and appear anxious; small anxiolytic doses suffice — it is not necessary to render the patient deeply unconscious. Review the benefits, burdens and risks of continued parenteral hydration and enteral nutrition in sedated patients.

Palliative sedation is distinguished from euthanasia by three features: intention (to relieve intractable symptoms, not to end life), proportionality (careful titration according to effect on symptoms), and causation (death results from the underlying disease). The Dutch "terminal sedation" protocol — high-dose continuous infusion with nutrition and hydration withheld — has been criticised as euthanasia without the required administrative framework.

Personhood persists even when the patient is actively dying and has lost many functions. While still alive they are no less a person, though they may be a different person from before the illness. Goals of care include being kept clean, having a designated decision-maker, dignity, optimal control of pain, breathlessness and anxiety, financial affairs in order, the opportunity to say goodbye, appropriate physical touch, life review, and reassurance that the family is prepared.

Nursing homes — a median of about 18% of adults aged 65 and over die in a nursing home (range 3% in Korea to 38% in New Zealand and Iceland). At least 60% of nursing-home decedents have dementia and most have two or more comorbidities. Palliative care consultation in the nursing home is associated with significantly lower rates of end-of-life hospitalisation, and there is expert consensus that hospice and palliative care should be a standard service in nursing homes.

Bereavement — anticipatory grief support, honest information, involvement in care, follow-up contact after the death, and identification of complicated/prolonged grief disorder. Carer distress before the death predicts poor bereavement outcome. Once the person dies they are a body, and responsibility passes to the named next of kin.

Assisted dying remains a controversial and separate issue from palliative care (Victoria, Australia legalised Voluntary Assisted Dying in 2017). In India, active euthanasia and physician-assisted suicide remain illegal; only passive euthanasia — withholding or withdrawing life-sustaining treatment — is lawful.

Opioid access transformed by the NDPS (Amendment) Act 2014, which created the category of Essential Narcotic Drugs with a single state-level licence, replacing multiple licences under conflicting state rules. Coverage nevertheless remains poor outside a few states.

Kerala's Neighbourhood Network in Palliative Care and the 2008 Kerala Palliative Care Policy (the first in India) remain the national and international model of a community-owned, volunteer-driven, home-based service integrated with local self-government. The National Programme for Palliative Care (NPPC) is now delivered through the NHM.

Persistent problems — over-medicalised death in ICUs, out-of-pocket catastrophic expenditure, family-centred (rather than patient-centred) decision-making, non-disclosure of prognosis to the patient, absence of dedicated legislation, and very limited palliative-care workforce and training.

Definitions: end of life = last 12 months; terminal phase = last days to hours; palliative care applies to frailty, dementia and organ failure, not only cancer, and works best when started early.

Recognising dying: Gold Standards Framework triggers — surprise question, patient choice/need, clinical indicators. Failure to recognise dying leads to futile resuscitation and inappropriate hospital transfer.

Advance planning: document in advance which interventions are not to be considered; ideally an ACD before care-home admission; essential for safe out-of-hours decisions.

Withholding vs withdrawing: ethically and legally equivalent; no obligation to give non-beneficial treatment; DNACPR restricts nothing else.

Nutrition and hydration: consider separately; subcutaneous fluid as effective as IV; exclude hypercalcaemia, hyperglycaemia, renal failure and infection as causes of anorexia; PEG does not help advanced dementia; steroids and megestrol have limited value.

Symptom control in the last days: subcutaneous opioid, midazolam, haloperidol and an antimuscarinic; stop non-essential drugs; exclude retention and impaction in terminal restlessness.

Palliative sedation: rarely needed; titrated; distinguished from euthanasia by intention, proportionality and causation.

Psychosocial and bereavement: dignity, personhood, saying goodbye, family support, follow-up for prolonged grief. 3-point current update: (i) The Liverpool Care Pathway has been withdrawn and replaced by the Five Priorities for Care of the Dying Person — individualised care rather than a pathway. (ii) Harish Rana v. Union of India (SC, March 2026) — CANH via PEG is medical treatment that may be withdrawn in the patient's best interests, with mandatory palliative care; MoHFW 2024 guidelines operationalise the two-board process. (iii) Prolonged Grief Disorder is now a formal ICD-11 / DSM-5-TR diagnosis, and early integrated palliative care is evidence-based in non-malignant disease.