Care in the Last Days of Life

Introduction

Around half a million people die in England each year, and most doctors will care for dying patients from their first month of practice. Doing it well is a specific clinical skill with a specific evidence base, and doing it badly - through failure to recognise dying, failure to talk about it, or failure to prescribe in anticipation - causes suffering that is entirely avoidable.

The history matters for understanding current practice. The Liverpool Care Pathway was developed to bring hospice standards into hospitals but was applied as a tick-box protocol, sometimes without discussion with families and sometimes with food and fluid withdrawn inappropriately. The Neuberger review in 2013 recommended its withdrawal, which happened in 2014.⁴ What replaced it is not another pathway but a set of principles: the Five Priorities for Care of the Dying Person, and NICE guideline NG31.^1,3

Recognising that someone is dying

There is no test for dying. The diagnosis rests on a pattern of change, usually over days, in a patient with a known progressive illness - and it should be made by a senior clinician after review, not inferred from a single observation.

• Progressive weakness and reduced mobility - increasingly bed-bound, unable to move without help
• Reduced conscious level - increasingly drowsy, sleeping most of the day, rousable but not for long
• Reduced oral intake - loss of interest in food, then in fluid; inability to swallow tablets is a practical turning point
• Changes in breathing - Cheyne-Stokes respiration, long apnoeic pauses, shallow or noisy breathing
• Peripheral shutdown - cool, mottled extremities, particularly the knees and feet; a weak, thready pulse; falling blood pressure
• Reduced urine output and, sometimes, incontinence
• Delirium or terminal agitation, often with a reversed sleep-wake pattern
• Noisy respiratory secretions as the cough reflex is lost
• The patient's own sense that they are dying, and the family's - both of which are worth taking seriously

NG31 is explicit that uncertainty is normal and should be shared rather than concealed. It is entirely acceptable, and much more honest, to say to a family: "I think he may be dying, but I am not certain. We will treat the things that might be reversible, keep him comfortable, and review him at least once a day." A patient thought to be dying who improves should have the plan revised without embarrassment - and this happens often enough that daily review is a formal recommendation.

Communication

The most common complaint from bereaved families is not about symptom control but about communication - being told nothing, being told inconsistent things, or being told the patient was "poorly" and then finding they had died.

• Use plain words. "Dying" and "died" are unambiguous; "deteriorating", "poorly", "gone" and "lost" are not, and euphemism is the commonest source of misunderstanding.
• Establish what they already understand before adding information, and give it in small pieces with pauses
• Acknowledge and share uncertainty about how long, and give ranges in units of time - hours to days, days to short weeks
• Ask what matters to them - who they want present, where they want to be, religious or cultural observances, and anything unfinished
• Check for an advance decision, a lasting power of attorney for health and welfare, or a ReSPECT form, and make sure any existing wishes are honoured
• Involve the family, with the patient's consent, and explore their needs separately - they may need permission to go home and sleep
• Document the conversation, including what was said and who was present, and make sure the whole team says the same thing
• Speak to the patient even if they seem unconscious. Hearing is thought to be preserved late, and it is worth telling families this so they continue to talk to them.

Hydration and nutrition

This is the area where the Liverpool Care Pathway failed most visibly, and NG31 is deliberately careful about it. The guidance is that clinically assisted hydration should be neither routinely started nor routinely withheld - it is a decision made with the patient and family, tried where there is doubt, and reviewed at least daily.¹

• Support oral intake for as long as the person wants it and can swallow safely - small amounts of whatever they enjoy, without pressure
• Mouth care is the single most important intervention for thirst - regular moistening, cleaning, lip balm, and teaching the family to do it, which also gives them something useful to do
• Clinically assisted hydration may relieve thirst and reduce delirium in some patients, but does not prolong life and can worsen respiratory secretions, peripheral oedema and pulmonary congestion
• Subcutaneous fluid is often more practical than intravenous at home or in a hospice
• A trial with a clear review point is a reasonable approach where the benefit is uncertain - and stopping something that is not helping is legitimate and should be explained in advance
• Explain the physiology to the family - that the person is not dying because they have stopped eating, but has stopped eating because they are dying. This distinction relieves enormous guilt.

Medication review and anticipatory prescribing

Stopping what is no longer needed

Review every drug against a single question: does this contribute to comfort now? Stop statins, antihypertensives, oral hypoglycaemics, anticoagulants where appropriate, vitamins, bisphosphonates, and most disease-modifying therapy. Convert essential drugs - analgesia, antiemetics, anticonvulsants - to a subcutaneous or transdermal route once swallowing is unreliable. Do not remove a fentanyl patch; continue it and add subcutaneous as-required doses alongside.

Anticipatory medicines

Anticipatory ("just in case") medicines are prescribed and dispensed before they are needed, so that a symptom at 3 am at home does not require a GP visit, a pharmacy and a prescription. Failing to prescribe these before a Friday discharge is one of the commonest and most consequential omissions in practice.

The syringe driver

A continuous subcutaneous infusion (CSCI) delivered by a syringe pump is started when the oral route is lost, or when the patient is needing two or more as-required doses a day. The 24-hour dose is calculated from what has actually been used, and as-required doses are continued alongside for breakthrough symptoms at one-sixth of the 24-hour dose.

Managing symptoms in the dying phase

Pain

Continue existing analgesia by a route that works. Assess pain in an unresponsive patient by observing facial expression, grimacing on movement, restlessness, groaning, guarding and tachypnoea; validated observational tools such as the Abbey Pain Scale help. Do not reduce or stop opioids simply because the patient is dying and drowsy - that is when pain is least likely to be reported and most likely to be missed.

Terminal agitation and restlessness

Restlessness, plucking at bedclothes, calling out and attempting to get out of bed are common in the last days and deeply distressing to watch. Always look for a cause before sedating:

• Urinary retention - palpate and bladder-scan; catheterisation resolves it immediately and is frequently the whole answer
• Faecal impaction and constipation
• Pain that the patient can no longer report
• Opioid toxicity or another drug cause, including abrupt withdrawal of benzodiazepines, alcohol or nicotine (a nicotine patch is worth remembering)
• Hypoxia, hypercalcaemia, hypoglycaemia, infection
• Fear, spiritual distress or unfinished business - which respond to presence, honesty and, where wanted, chaplaincy far better than to midazolam
• Uncomfortable position, full bladder bag, a wet bed, a bright light - the simple things

Where no reversible cause is found, midazolam subcutaneously as required, moving to a syringe driver if it is needed repeatedly, is the usual approach. If there is delirium with hallucinations or paranoia, haloperidol or levomepromazine is preferred, since a benzodiazepine alone can worsen delirium.

Respiratory secretions

The rattling sound of secretions moving in the upper airway occurs in around half of dying patients. There is no good evidence that it causes the patient distress, but it distresses families enormously, and explaining that is the first and most important intervention. Reposition the patient onto their side, stop or reduce clinically assisted hydration if it is contributing, and avoid routine suction, which is uncomfortable and stimulates more secretion.

Antimuscarinics reduce further secretion but do not clear what is already there, which is why they work better when given early rather than once the rattle is established. The three agents are easily confused, and the difference that matters is whether they cross the blood-brain barrier.

Other measures

• Mouth care hourly - the intervention families most value and can help with
• Pressure area care - regular repositioning, though comfort takes priority over a strict turning regimen in the final hours
• Eye care if the eyes remain partly open
• Catheterise for retention or if incontinence is causing skin damage and distress
• Stop routine observations, blood tests and monitoring that will not change management - continuing them signals to families that something is still being done, which is misleading
• Deactivate an implantable cardioverter-defibrillator. An active ICD will deliver painful shocks during the dying process. This requires a magnet or a technician and must be arranged in advance - it is one of the most frequently forgotten tasks.

Practical, legal and organisational matters

• Resuscitation status - a DNACPR or ReSPECT decision should be made and, crucially, discussed with the patient if they have capacity, or with those close to them if they do not. It is a clinical decision that does not require consent, but not discussing it is unlawful in most circumstances following the Tracey judgment.⁶
• Mental capacity - assess it for each decision. Where capacity is lacking, act in the person's best interests, taking account of any advance decision to refuse treatment, a health and welfare lasting power of attorney, and previously expressed wishes.
• Preferred place of death - ask, and act on it. Rapid discharge home or to a hospice needs anticipatory medicines, a syringe driver if required, district nurse and out-of-hours GP notification, equipment, and a DNACPR form that travels with the patient.
• Organ and tissue donation - most patients dying an expected death cannot donate organs, but corneal and some tissue donation is often possible and should be offered where appropriate, since families are frequently glad to be asked
• Verification and certification of death, notification to the medical examiner, and referral to the coroner where the death is unexpected, related to an industrial disease such as mesothelioma, or where the cause is unknown
• Care after death - respectful handling of the body, attention to cultural and religious requirements, and prompt release of paperwork so the family can register the death
• Bereavement support - written information, contact details, and an offer of follow-up. A phone call from a familiar clinician some weeks later is remembered for years.

Common pitfalls

Prognosis and outcomes

Clinical prediction of survival is poor - doctors systematically overestimate how long patients have, and the error grows the better they know the patient. The practical response is to give ranges in units of time (hours to days, days to weeks, weeks to months), to say plainly that the estimate may be wrong in either direction, and to advise families to do anything that needs doing sooner rather than later.

Good care in the last days is measurable in outcomes that matter: dying in the preferred place, symptoms controlled, family present and prepared, and no unwanted admission or intervention in the final hours. National audit consistently finds that recognition of dying and communication with families are the areas where practice most often falls short - not symptom control, which is generally done reasonably well.²

Finally, this work has a cost for the people doing it. Debriefing after a difficult death, seeking support, and being allowed to feel something are part of practising sustainably, and it is worth saying that explicitly rather than treating professional detachment as the only acceptable response.