15.2 End-of-Life Care, the End-of-Life Symbol & Care After the Patient Dies

End-of-Life Care, the End-of-Life Symbol & Care After the Patient Dies

RCSI's death and dying station group lists after the patient dies as a current example, and its reading list includes the Irish Hospice Foundation toolkit for compassionate end-of-life care, the Think Ahead planning pack, the Irish Hospice Foundation end-of-life symbol, Marie Curie guidance on caring for someone in their last days and hours, and the HSE booklet When Someone You Care About is Dying in Hospital.

This is care you get one chance to do well. Families remember the death of a relative in detail for the rest of their lives, and what they remember most is how people behaved.

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Recognising That a Person Is Dying

Recognising dying is a clinical skill, and getting it wrong in either direction causes harm: unrecognised dying leads to futile investigation and missed opportunities for comfort and farewell; a premature assumption leads to treatable illness going untreated.

Common signs in the last days and hours:

• Profound weakness, bed-bound, sleeping most of the time
• Reduced interest in food and fluids, and difficulty swallowing
• Reduced conscious level, drifting in and out, then unrousable
• Altered breathing - irregular, shallow, long pauses, or a Cheyne-Stokes pattern of crescendo-decrescendo breathing with apnoeic gaps
• Respiratory secretions - the rattling sound of secretions the person can no longer clear, which distresses relatives far more than the patient
• Cool, mottled peripheries, peripheral cyanosis, weak pulse, falling blood pressure
• Reduced urine output, dark concentrated urine
• Withdrawal from surroundings, sometimes with terminal restlessness or agitation

Uncertainty is normal. Trajectories vary, people can rally, and prognostication is imprecise. Where there is doubt, the right approach is to plan for both possibilities: treat what is reversible, and at the same time ensure comfort is not neglected while that is being sorted out.

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Priorities of Care in the Last Days

Hydration and nutrition at the end of life should be discussed openly. Comfort feeding and sips as desired are continued for as long as the person wants them and can swallow safely. Mouth care replaces fluids as the way of relieving thirst when swallowing is unsafe. Clinically assisted hydration is an individual decision, discussed and documented rather than applied as routine either way.

Respiratory secretions are managed by repositioning, reducing any unnecessary fluids, and antisecretory medication given early - once secretions have pooled they are hard to clear. Explaining to the family that the sound distresses them more than it distresses the patient is itself an intervention.

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Advance Care Planning and Think Ahead

The Think Ahead planning pack, produced by the Irish Hospice Foundation, helps people record their wishes about care, treatment and practical arrangements before a crisis.

Under the Assisted Decision-Making (Capacity) Act 2015, a person with capacity may make an advance healthcare directive setting out treatments they would refuse in future should they lose capacity. A valid and applicable refusal of treatment is legally binding; a request for a specific treatment is not binding but must be taken into account. A person may also appoint a designated healthcare representative to exercise the directive on their behalf.

The nursing responsibilities are practical: ask whether a directive exists, make sure it is available in the healthcare record, ensure the treating team knows about it, and make sure it is honoured. A directive nobody can find at 3 a.m. protects nobody.

Where a do-not-attempt-resuscitation decision has been made, ensure it is clearly documented, communicated at every handover, and travels with the person on transfer. A DNAR decision applies to cardiopulmonary resuscitation only and never means any reduction in other care.

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The End-of-Life Symbol

The Irish Hospice Foundation end-of-life symbol is a simple, dignified emblem displayed in hospitals and care settings to signal discreetly that a person is dying or has died in that area.

Its purpose is to communicate without words. When staff, other patients or visitors see it, they know to lower their voices, move quietly, avoid intrusion, and give the family privacy and time. It allows a busy ward to change its behaviour around a death without a public announcement that would breach confidentiality.

In practice: use it in line with local policy, explain it to families if they ask, and - the part that matters - actually change your own behaviour when you see it.

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Care After Death (Last Offices)

Care after death is the final nursing care given to a person and the first care given to their bereaved family.

Immediately

1. Verification of death is carried out by a practitioner authorised to do so under local policy - a registered medical practitioner, or a registered nurse where a local policy and competency framework permit it. Certification of the cause of death is a separate act and is a medical function.
2. Record the date and time of death and who verified it.
3. Tell the family in person where possible, with privacy, warmth and plain words. Avoid euphemisms - "she has died" is clearer and kinder than "she has passed".
4. Offer the family time with the person before any care after death is carried out, and again afterwards. Let them stay as long as they reasonably can.
5. Ask about religious, cultural and personal wishes before proceeding. Practices around who may touch the body, washing, positioning, timing of burial, presence of family, and whether the body may be left alone vary considerably, and assumption is the enemy here. Offer chaplaincy or the person's own faith representative.
6. Display the end-of-life symbol per local policy.

Personal Care

• Perform hand hygiene and wear appropriate PPE; standard precautions apply after death as before it.
• Lay the person flat with one pillow, straighten the limbs, and close the eyes and mouth gently, supporting the jaw if needed. Do this early, before rigor mortis develops.
• Wash the person unless the family or their faith tradition asks otherwise, or the death is reportable to the coroner.
• Attend to continence and any leakage with absorbent pads; cover wounds with clean dressings.
• Remove jewellery only with the family's agreement and a documented witnessed record, or leave it in place and record what remains on the person.
• Devices and lines: in an expected, non-reportable death these are removed per local policy. Where the death is reportable to the coroner, all lines, tubes, drains and devices are left in situ.
• Implanted devices must be reported for safe management - a pacemaker or implantable cardioverter-defibrillator must be removed before cremation, and radioactive implants need specific handling.
• Dress the person as local policy or the family wishes, apply identification bands per policy, and complete the notification and transfer documentation.
• Handle the person with the same respect you would have shown while they were alive, including maintaining dignity and privacy during transfer.

Reporting to the Coroner

A death must be reported to the coroner where it is sudden, unexplained, unnatural, violent, or the result of an accident, or where it occurs in circumstances that require investigation - for example, deaths related to a procedure or anaesthetic, deaths in custody or detention, deaths from an industrial disease, or where the deceased was not attended by a doctor during their last illness within the relevant period.

Where a death is reportable:

• Leave all lines, tubes, drains, catheters and devices in situ.
• Do not wash the person or remove clothing unless instructed.
• Preserve anything that may be relevant.
• Document precisely, factually and contemporaneously.
• Follow local policy for notifying the coroner's office and inform the family sensitively that a coroner's referral is required, and what that means for them.

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Supporting the Bereaved

• Provide information the family can use later, when they are able to take it in: registering the death, the death certificate, funeral arrangements, collecting property and bereavement supports. Give it in writing, because almost nothing said in the first hour is retained.
• Return belongings respectfully - in a proper bag, never a clinical waste sack - with a documented, witnessed inventory.
• Ask about organ and tissue donation only in line with local policy and the appropriate pathway, and with proper training.
• Signpost bereavement supports: the Irish Hospice Foundation, hospital bereavement services, the person's own community and faith supports, and the GP.
• Remember children. Families often ask how to tell a child. Honest, simple, concrete language using the word "died" is better than metaphors such as "gone to sleep", which frighten children.

And Your Colleagues

Repeated exposure to death has a cumulative effect on staff. Debriefing after a difficult death, peer support, and recognising compassion fatigue in yourself and others are part of professional practice, not a weakness. NMBI Domain 6 expects reflective practice, and the death of a patient is one of the things most worth reflecting on.