Mednotes

L1 Ethics Brain Death and EOL

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tagsethics, lecture
aliasesL1 Ethics Brain Death and EOL

16 min read

Overview

This lecture covers how death is diagnosed and why formal criteria are needed, the clinical definition and process for declaring Brain Death, disorders of consciousness that fall short of death (Persistent Vegetative State and Minimally Conscious State) illustrated through landmark legal cases, and the legal tools for respecting the autonomy of patients who cannot decide for themselves (Advance Directive and Enduring Power of Attorney). It closes with quality of life and sanctity of life, the risk of an unacceptable outcome, Locked-in Syndrome, and practical guidance for clinicians managing these decisions.

Determining Death: Historical Background and Rationale

  • Diagnosing death has historically been unreliable: 19th-century “safety coffins” included a bell-pull so a person buried alive could signal; a 2008 case saw a crash victim mistakenly presumed dead by EMTs and left for an hour before being found still breathing.
  • Pronouncing death matters because it allows: stopping futile treatment, beginning the grieving process, beginning funeral arrangements, beginning legal and financial proceedings, and organ removal for transplantation where appropriate (ANZICS Statement on Death and Organ Donation, 4th ed., 2019).
  • Historical views on when death occurs:
    • Biblical tradition links “spirit” with breath; some read this as meaning death occurs once breathing stops.
    • Ancient Greek view: death occurs when the heart stops.
    • Paulus Zacchias (1584-1659), “Father of Forensic Medicine”: before putrefaction, no sign reliably distinguishes life from death.
    • Antoine Louis (1723-1792), co-inventor of the guillotine: onset of rigor mortis is a sufficient sign of death.
    • 18th-century Britain: physicians were taught to revive the “drowned and suffocated” using smelling salts, vigorous shaking, artificial respiration, and electrical shocks (galvanism).
    • 19th century: death defined as no heartbeat and no breathing, tested with the mirror test, candle test, and bleeding test.

Brain Death: Diagnosis and Declaration

  • Brain death is a syndrome with three cardinal findings: coma, apnea, and absence of brainstem reflexes.
  • Coma: a deep state of prolonged unconsciousness from which the person cannot be woken; to be brain dead a patient must score 3, the lowest possible score, on the Glasgow Coma Scale.
  • Apnea: no respiratory effort at all.
  • Absence of brainstem reflexes: pupils dilated and unreactive, no corneal reflex, no startle reflex, no gag reflex, no cough reflex, no breathing response even with high CO2.
  • The clinical process for declaring brain death in New Zealand and Australia is set out in the ANZICS Statement on Death and Organ Donation (4th ed., 2019).
  • Key points about the process:
    • Brain death determination is a medical decision and does not require family approval.
    • Family may visit before the second exam is completed.
    • Once medical staff determine brain death, the patient is dead; the ventilator is not reconnected after the second apnea test.
    • Clinicians should avoid the term “brain dead”: dead is dead.
    • No permission is needed from family to withdraw technology once brain death is diagnosed, since asking implies a choice that does not exist (though some difficult cases have tested this).
    • Performing this role requires moral conviction and peer/institutional support.
  • Difficult cases exist where patients diagnosed as brain dead have nonetheless been kept “alive” by families contesting the diagnosis, representing the extreme end of debates about futility; the lecture notes this shows the consensus on brain death is more fragile than often assumed.

Personhood and Personal Identity

  • Two long-standing philosophical questions recur in end-of-life ethics:
    • Personhood: what does it mean for something to be a person?
    • Personal identity: what makes a person the person that they are, and can neurological damage take away a person’s identity?
  • These problems help explain why people struggle to find language to describe patients with profound, irreversible neurological damage.

Disorders of Consciousness: PVS and MCS

  • Persistent Vegetative State: first defined by Jennett and Plum (1972) as a disorder of consciousness in which patients with severe brain damage show partial arousal without true awareness.
    • “Persistent”: present for 4 weeks.
    • “Permanent”: 1 year after traumatic brain injury; 3 months (US) or 6 months (UK) after non-traumatic brain injury.
    • Terminology is in transition; also called “unresponsive wakefulness syndrome”.
  • Minimally Conscious State: defined by Giacino et al. (2002) as a condition in which the patient shows some intermittent, minimal awareness.
  • Landmark cases illustrating these states and the legal/ethical debate over withdrawing treatment:
    • Karen Ann Quinlan: admitted in a coma on 15 April 1975; her parents’ legal fight to remove her ventilator forced careful consideration of what it means for doctors to withdraw treatment and of the nature of killing.
    • Terri Schiavo: suffered brain damage after a heart attack in 1990 (aged 27), diagnosed with PVS, unconscious with severe diffuse neocortical damage, no responsiveness, requiring complete nursing care and artificial nutrition and hydration, with no prospect of recovery.
    • Tony Bland: 18-year-old injured in the Hillsborough Disaster (1989), leading to PVS. Airedale NHS Trust v Bland (1993) was the first case in English legal history to allow a patient to die through withdrawal of artificial nutrition and hydration (ANH). He died in December 1993 (aged 22), becoming the disaster’s 96th victim.
    • Charlie Gard (2016-2017): born with mitochondrial DNA depletion syndrome, a rare genetic disorder causing progressive brain damage and muscle failure; his medical team and parents disagreed over whether experimental treatment was in his best interests.
  • Considerations that should guide decisions in PVS/MCS cases: the harms of ongoing treatment, whether there is any hope of recovery (substantial benefit), what the patient would have chosen (autonomy), quality of life, sanctity of life, and resource allocation.

Respecting Autonomy: Advance Directives and EPOA

  • Two legally recognised methods for respecting the autonomy of a patient who has lost, or never had, the capacity to decide: an advance directive, and an Enduring Power of Attorney (EPOA).
  • EPOA:
    • Represents the patient’s interests and may consent to treatment on the patient’s behalf.
    • Established under the Protection of Personal and Property Rights Act 1988.
    • Section 98.4, read with section 18 (“Powers and duties of welfare guardian”), limits what an EPOA/welfare guardian can do: they cannot decide on marriage or civil union (or its dissolution) for the patient, decide on adoption of the patient’s child, refuse consent to standard medical treatment intended to save life or prevent serious harm to health, consent to electro-convulsive treatment, consent to surgery or treatment intended to destroy brain tissue or function in order to change behaviour, consent to the patient taking part in medical experiments (other than to save life or prevent serious harm to health), or request assisted dying for the patient under the End of Life Choice Act 2019.
  • Advance directives:
    • Right 7(5) of the Code: “every consumer may use an advance directive in accordance with the common law”.
    • Defined as a written or oral directive by which a consumer makes a choice about a possible future health care procedure, intended to be effective only once the person is not competent.
    • Value: respects autonomy, helps clinicians make decisions, generally leads to better outcomes, builds trust, addresses fears, and provides a sense of control, paralleling the reasons informed consent matters.
    • Challenges: can we be sure the decision was adequately informed; can we be sure the person had this precise situation and procedure in mind; how do we know the person has not changed their mind; how should the “Odysseus problem” (a prior competent choice binding a person whose situation or wishes may since have changed) be negotiated?
  • Advance Care Planning (ACP): the process of thinking about, talking about, and planning for future health care and end-of-life care. Ideally reviewed regularly as illness progresses and made available to all treating clinicians; managed well, it can address some of the challenges of advance directives.

Quality of Life, Sanctity of Life, and Outcome Risk

  • Questions about acceptable quality of life are often framed as a “life not worth living”. This framing is historically associated with eugenic thinking in the first half of the 20th century, “mercy killings”, and ultimately the Holocaust.
  • The concept should not be read as judging certain people as substandard; rather, it reflects that people can reasonably and with sound moral judgment decide that a certain kind of life, or the prolongation of life, is of no benefit to themselves or anyone else.
  • “The risk of an unacceptably bad outcome” is a concern that arises with treatments that are potentially life-saving but non-restorative. It should encourage a patient-focused perspective: what condition would the patient find unacceptable, recognising these judgments are inevitably value-laden.
  • Glasgow Outcome Scale (5-point): 5 Good outcome (resumption of normal life, may have minor deficits); 4 Moderately disabled (can work in a sheltered environment, use public transport); 3 Severely disabled (dependent for daily support); 2 Persistent vegetative state (unresponsive and speechless for weeks or months or until death); 1 Death.
  • Glasgow Outcome Scale Extended (8-point): 1 Dead; 2 Vegetative State (cannot obey commands or say words); 3 Severe Disability-Lower (needs frequent help or someone around most of the time); 4 Severe Disability-Upper (no frequent help needed, can be alone up to 8 hrs, cannot shop or travel locally unaided); 5 Moderate Disability-Lower (cannot work except in a sheltered/non-competitive role, rarely participates in social or leisure activity, constant/intolerable daily disruption to relationships); 6 Moderate Disability-Upper (can work or study at reduced capacity, participates less than half as often socially, frequent but tolerable weekly disruption to relationships); 7 Good Recovery-Lower (participates at least half as often socially, occasional relationship disruption, ongoing symptoms such as headache, dizziness, tiredness, or memory/concentration problems affect daily life); 8 Good Recovery-Upper (works to previous capacity, resumes previous activities, no ongoing psychological or relationship disruption).
  • RUB (Risk of Unacceptable Badness): term from Gillett, Honeybul, Ho and Lind’s paper on decompressive craniectomy for severe head injury (temporary removal of a section of skull to relieve dangerously high intracranial pressure). The procedure allows more patients to survive severe head injury, but some survive severely disabled, likened to the RUB. A prediction model has been developed and validated against observed 18-month outcomes in a Western Australian cohort, allowing the RUB to be estimated for individual cases. Key questions raised: acute teams should try to account for what the patient’s own decision might be if they could be asked, and what the resource implications are of “against the odds heroism”.

Locked-in Syndrome

  • The person is conscious but cannot indicate it through any voluntary response or other bodily action.
  • Possible causes given: a lesion in the midbrain, Guillain-Barre syndrome, spinal muscular atrophy type I (SMA I), and (queried) motor neurone disease.
  • Illustrated with the case of Nick Chisholm, who described his experience in a first-person account, “The patient’s journey: living with locked-in syndrome” (with Grant Gillett), following a rugby-field accident on 29 July 2000.

Clinical Practice: Key Points and Professional Support

  • Framing treatment around a goal: be clear what the actual goal of treatment is.
  • Reconsider what the patient themselves would have wanted.
  • Consider how certain the diagnosis and prognosis actually are.
  • A negotiated “trial of treatment”: agree in advance to stop treatment if the goal is not reached within an agreed period, framed as “give it our best shot” and “see how they respond”.
  • When at odds with a family member’s request, make a concerted effort to listen and understand their concerns, and look for a compromise.
  • Meaning and good endings: meaning has to be negotiated in culturally informed terms; the decision reached has to be one everyone can go on living with; the resulting story has to be told with sincerity and conviction; clinicians cannot always judge what counts as a good life, and should never become complacent about these decisions. Examples given: Stephen Hawking lived a long and meaningful life despite ALS; a child living with spinal muscular atrophy.
  • Reflection and support: when confronted with cases like these, clinicians should look for a way to reflect on what happened and discuss it afterwards, whether with a supportive senior colleague, a peer, or a mentor, since these cases are personally challenging and talking and reflecting helps.

Self-test

  1. List the practical reasons why it is important to formally pronounce a person dead.
  2. Give three historical views on when a person is considered dead, with who held each view.
  3. Define brain death and list its three cardinal findings.
  4. What Glasgow Coma Scale score must a patient have to meet the coma criterion for brain death, and what does that score represent?
  5. List the signs used to establish absence of brainstem reflexes when diagnosing brain death.
  6. Describe the correct clinical process for declaring brain death, including the role of family consent and what happens to the ventilator after the second apnea test.
  7. Distinguish the philosophical problem of personhood from the problem of personal identity.
  8. Define Persistent Vegetative State and state the time thresholds that make it “persistent” versus “permanent”.
  9. Define Minimally Conscious State and distinguish it from PVS.
  10. Describe the legal significance of the Tony Bland case (Airedale NHS Trust v Bland).
  11. List the considerations that should guide decisions about continuing or withdrawing treatment in PVS/MCS.
  12. Distinguish an advance directive from an Enduring Power of Attorney as ways of respecting a non-competent patient’s autonomy.
  13. Describe the limits the law places on what an EPOA/welfare guardian can decide.
  14. What is the “Odysseus problem” for advance directives, and what other challenges do advance directives face?
  15. Explain what is meant by a “life not worth living” and how this differs from judging a person as substandard.
  16. What does the Glasgow Outcome Scale measure, and what score corresponds to persistent vegetative state?
  17. Explain the concept of “RUB” (Risk of Unacceptable Badness) and why it arose in the context of decompressive craniectomy.
  18. Describe locked-in syndrome and list the possible causes given in the lecture.
  19. Describe the elements of a negotiated “trial of treatment” when managing a family who is at odds with the clinical team.
  20. A patient is diagnosed with persistent vegetative state after a traumatic brain injury and has no advance directive. Explain how personhood, autonomy, quality of life, and resource allocation would each inform the team’s approach to the decision about continuing treatment.

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