Phys · geriatric
End-of-Life Care and Advance Care Planning
Also known as end-of-life care · advance care planning · advance care directive · advance directive · goals of care · ceiling of treatment · not for resuscitation · terminal care · dying patient · anticipatory prescribing · Just In Case Box · terminal care pack · palliative care · substitute decision-maker · voluntary assisted dying · prolonged grief disorder
Consultant-physician-depth guide to end-of-life care and advance care planning for FRACP DWE and DCE — the definition of end-of-life care as the last 12 months of life (not only the dying phase), advance care planning and the Surprise Question, advance directives as legally binding refusals, goals-of-care conversations and ceilings of treatment, recognising and managing the dying patient (last days of life), anticipatory prescribing and the Just In Case Box (morphine, midazolam, glycopyrronium, levomepromazine), the ethical equivalence of withholding and withdrawing treatment, voluntary assisted dying in Victoria and Western Australia, the SPIKES protocol for breaking bad news, and normal versus complicated bereavement.
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Red flags
- A patient who is becoming progressively drowsy, reduced oral intake and whose swallowing is failing is entering the dying phase — recognise it, communicate it to the family, and switch from curative to anticipatory symptom-focused care
- Confusion and agitation in a palliative patient is delirium until proven otherwise — seek and treat the reversible precipitant (hypoxia, sepsis, urinary retention, opioids, hypercalcaemia) before ascribing it to the dying process
- An advance directive that refuses a specific treatment is legally binding and must be respected even if the patient has lost capacity — ignoring it is battery
- A request for hastened death is a communication about suffering, not a settled request — explore the reason (often unrelieved pain, depression, fear, loss of autonomy), address reversible suffering, involve specialist palliative care, and do not abandon the patient
- Noisy respiratory secretions in the dying patient are usually more distressing to the family than to the patient — explain, reposition, reduce non-essential fluids, and give a subcutaneous antimuscarinic early
- Unrelieved pain at the end of life is almost always manageable — never accept 'nothing more can be done'; involve specialist palliative care and consider opioid rotation, ketamine or palliative sedation for refractory symptoms
End-of-Life Care and Advance Care Planning
The answer first
End-of-life care is the care of a person likely to die within the next 12 months — not only the care of the final days. The broad definition matters because most of what improves a dying patient's experience — advance care planning, aligning treatment with values, avoiding non-beneficial interventions, involving palliative care early — must be done months before death, when the patient still has capacity and the team still has options.[1]
Four rules govern the whole topic. First, end-of-life care begins when you would not be surprised if the patient died within the year — the Surprise Question is the trigger. Second, advance care planning is a conversation, not a document — a signed form filed away changes little; a structured, repeated, documented discussion is what reduces non-beneficial treatment and lowers family distress. Third, a ceiling of treatment is not a withdrawal of care — "not for resuscitation" means active treatment continues within agreed limits, focused on symptoms. Fourth, the dying patient has a recognisable syndrome, and anticipatory prescribing means you do not chase symptoms in a crisis.[1]
The classic trap: when asked "best management of an older inpatient with end-stage organ failure who is deteriorating and has no advance directive," the answer is almost never "escalate to ICU." It is recognise the end-of-life phase, hold a goals-of-care conversation, document a ceiling of treatment, and provide active symptom-focused care with palliative care input. Escalation without a prospect of meaningful recovery is non-beneficial and often harmful.[3][11]
References11ShowHide
- [1]Brinkman-Stoppelenburg A, Rietjens JAC, van der Heide A The effects of advance care planning on end-of-life care: a systematic review Palliat Med, 2014.PMID 24651708
- [2]Detering KM, Hancock AD, Reade MC, Silvester W The impact of advance care planning on end of life care in elderly patients: randomised controlled trial BMJ, 2010.PMID 20332506
- [3]Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment JAMA, 2008.PMID 18840840
- [4]Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer N Engl J Med, 2010.PMID 20818875
- [5]Abernethy AP, McDonald CF, Frith PA, et al. Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial Lancet, 2010.PMID 20816546
- [6]Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer Oncologist, 2000.PMID 10964998
- [7]Bernacki RE, Block SD; American College of Physicians High Value Care Task Force Communication about serious illness care goals: a review and synthesis of best practices JAMA Intern Med, 2014.PMID 25330167
- [8]Bernacki R, Hutchings M, Vick J, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention BMJ Open, 2015.PMID 26443662
- [9]Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College [corrected] of Critical Care Medicine Crit Care Med, 2008.PMID 18431285
- [10]Prigerson HG, Horowitz MJ, Jacobs SC, et al. Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and ICD-11 PLoS Med, 2009.PMID 19652695
- [11]The SUPPORT Principal Investigators A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators JAMA, 1995.PMID 7474243