Medical Ethics, Capacity and Consent — Clinical Case

DCE Long Case

Patient brief (provided to trainee)

Mrs Margaret Hayes is a 78-year-old woman who has been a resident of a local aged-care facility for the past three years. She has advanced Alzheimer disease, diagnosed six years ago, and is now bed-bound, unable to recognise her family, unable to communicate meaningfully, and fully dependent for all activities of daily living. She has type 2 diabetes, hypertension, and a previous hip fracture. Her medications include metformin, amlodipine, and donepezil. [1]

She was admitted to your ward at 2 a.m. from the aged-care facility with increasing drowsiness over 24 hours, a fever of 38.9 degrees Celsius, a respiratory rate of 28, oxygen saturation of 88 per cent on room air, and crackles throughout the right lung field. A chest X-ray shows a right lower lobe consolidation consistent with aspiration pneumonia. Her son, Mr David Hayes, who is her enduring guardian, has been contacted and has arrived on the ward. He is distressed and is insisting that his mother be transferred to the intensive care unit and intubated. He states that he wants everything done for her. [1]

The treating team has reviewed Mrs Hayes. She responds only to pain, her Glasgow Coma Scale is 8 (E2 V2 M4), she is hypoxic and tachypnoeic. The registrar tells you that in her opinion intensive care would be futile in advanced dementia and would cause suffering. There is no advance care directive in the medical record, and the aged-care facility has no record of any goals-of-care discussion. [1]

Candidate's tasks

1. Present a structured opening statement (SASPOP) and a prioritised problem list.
2. Outline your assessment of Mrs Hayes's capacity for the decision about the intensity of treatment.
3. Outline the ethical framework for the decision and the role of the substitute decision-maker.
4. Describe how you would conduct the goals-of-care conversation with the son.
5. Propose a ceiling of treatment and an integrated management plan.
6. Describe the escalation pathway if the conflict cannot be resolved.
7. Discuss the communication, documentation and follow-up. [1]

Model opening statement and problem list

"Mrs Margaret Hayes is a 78-year-old woman, previously a schoolteacher, now a resident of an aged-care facility, who is admitted with an aspiration pneumonia on the background of advanced Alzheimer disease, and who presents a complex ethical dilemma: she lacks capacity for the decision about the intensity of treatment, she has no advance care directive, and her enduring guardian son is demanding intensive care and intubation that the treating team considers futile and harmful. [1]

Her main problems are:

1. Aspiration pneumonia with hypoxia and reduced conscious level — the acute presentation requiring immediate assessment and management.
2. Advanced, irreversible Alzheimer disease with critically impaired ability to participate in decisions — the underlying condition that frames the prognosis and the ethical analysis.
3. An ethical dilemma about the appropriate intensity of treatment, with a conflict between the family's demand for intensive care and the team's judgement of futility.
4. The absence of an advance care directive, which forces a best-interests decision using the substituted judgement standard.
5. The son's grief, which is driving the demand for everything and which must be addressed in the goals-of-care conversation. [1]

My integrated plan is: first, to assess and stabilise her acute presentation (oxygen, antibiotics, fluids, and a septic workup); second, to confirm her incapacity with a formal two-stage capacity assessment and document it; third, to hold a structured goals-of-care conversation with her son, exploring what she would have wanted and explaining the likely poor outcome of intensive care in advanced dementia; fourth, to propose a ceiling of ward-based active treatment with no ICU escalation and no cardiopulmonary resuscitation, paired with symptom control and family support; fifth, to escalate to a second opinion, the ethics committee, and the guardianship tribunal if the conflict cannot be resolved; and sixth, to address the son's grief and the family's need for support throughout. The overarching principle is that the decision is hers, made through substituted judgement, and the plan is active treatment proportionate to her goals — we will not resuscitate but we will not abandon." [1]

Capacity assessment

"Mrs Hayes lacks capacity for the decision about the intensity of treatment. I apply the two-stage test [1][2]. Stage 1 (diagnostic): she has a clear impairment of mind or brain — advanced Alzheimer disease, compounded by an acute delirium from sepsis and hypoxia. Stage 2 (functional): because of this impairment she cannot understand the information about the pneumonia and the treatment options, retain it, use or weigh it, or communicate a decision — she fails all four functional abilities.

Before finalising the assessment, I exclude reversible contributors: I correct her hypoxia with supplemental oxygen, I treat the sepsis with antibiotics and fluids, and I check her glucose, sodium, calcium and renal function. I review her medication chart for opioids or sedatives. However, her advanced dementia is an irreversible impairment, so even if the acute delirium resolves, her underlying incapacity for a complex, high-stakes decision will persist. I document the assessment formally: the specific decision, the information given, her responses, the four abilities, the conclusion, and the reasoning." [1]

Ethical framework and the substitute decision-maker

"The four principles of biomedical ethics structure the analysis. Autonomy: she lacks capacity, so her autonomy is exercised through the substituted judgement of those who knew her values. Beneficence and non-maleficence: the duty to act for her welfare and to avoid harm, weighing the very low likelihood of benefit from intensive care against the high burden of suffering and the loss of dignity. Justice: the fair allocation of a scarce intensive care resource to patients likely to benefit. [1]

The son is her enduring guardian, the legally recognised substitute decision-maker. His role is to represent her prior values and wishes, not to impose his own. I would ask him: did she ever discuss her preferences for intensive care or end-of-life treatment? Did she express views about being kept alive in a condition she would not have wanted? What mattered to her? His answers inform the substituted judgement — what would she, given her values, have chosen? [1]

The resolution is the best-interests test using the substituted judgement standard. I would provide honest information about the prognosis: intensive care in a patient with end-stage Alzheimer disease has a very low chance of survival to discharge and a high chance of a prolonged and distressing death in the unit [4]. The team's recommendation, on the basis of the likely outcome and the harm, is a plan proportionate to her goals."

The goals-of-care conversation with the son

"I would use a structured conversation combining the goals-of-care framework with the SPIKES protocol [6]. Setting: a quiet, private room, with the senior clinician and a nurse, enough time, and any other family the son wishes present. Perception: I begin by asking what he understands about his mother's condition and whether she ever discussed her preferences. Invitation: I ask how much detail he wants about the prognosis. Knowledge: I give honest information in plain language — that her Alzheimer disease is advanced and irreversible, that the aspiration pneumonia is a common and often terminal event in this stage, and that intensive care has a very low chance of meaningful recovery and a high chance of causing suffering. Emotions: I acknowledge his distress, name it, validate it, and allow silence. Strategy and Summary: I propose a plan that aligns with what he tells me about his mother's values — active treatment within a ceiling of ward-based care, focused on dignity and comfort — and I confirm his understanding, document the plan, and arrange follow-up.

I would specifically address the guilt that families feel when agreeing to a comfort-focused plan: choosing comfort is not giving up, it is an act of love in keeping with what his mother would have wanted." [1]

The ceiling of treatment and the integrated management plan

"I would propose a ceiling of ward-based active treatment with no escalation to intensive care and no cardiopulmonary resuscitation, focused on symptom control and comfort. Within the ceiling: supplemental oxygen titrated to a target saturation appropriate to her condition; a trial of antibiotics if consistent with the goals (recognising that in the dying patient antibiotics may be withheld on best-interests grounds); bronchodilators if there is a reversible component; opiate analgesia and anxiolysis for breathlessness and distress (oral morphine 2.5 mg as needed, or subcutaneous morphine 2.5 mg if she cannot swallow); a subcutaneous syringe driver for anticipatory symptom control if she is dying; careful attention to mouth care, positioning, pressure-area prevention, and continence; and family support. [1]

The artificial hydration question is addressed specifically with the son: in the dying patient, reducing or withholding artificial hydration may be appropriate as it may contribute to pulmonary and peripheral oedema without benefit, but the decision is made jointly. The key communication principle is that the ceiling is not a withdrawal of care — Mrs Hayes continues to receive active treatment of the precipitating illness and ongoing comfort-focused care. The plan is documented as a medical order and communicated to the nursing and medical team and to the aged-care facility." [1]

The escalation pathway

"If the son remains adamant that she goes to ICU and the team is equally adamant that it is futile, the pathway is: first, a second medical opinion from a senior clinician (the attending physician or the director of medicine); second, involvement of the hospital ethics committee; third, referral to the guardianship tribunal for an independent best-interests decision. Throughout, the patient continues to receive active treatment within the current ceiling and full symptom control. I would not unilaterally impose intensive care against the team's clinical judgement, nor unilaterally withhold all active treatment. The resolution is through the best-interests process and, where necessary, the tribunal." [1]

Communication, documentation and follow-up

*"I would document the capacity assessment, the best-interests reasoning, the goals-of-care conversations, the agreed ceiling, and any second opinion or tribunal ruling. I would communicate the plan to the nursing team, the medical team, the aged-care facility, and the general practitioner. I would offer the son a follow-up family meeting, and I would involve the palliative care team and the social worker for ongoing support. I would review Mrs Hayes daily and adjust the plan as her condition changes. If she deteriorates and dies, I would ensure her death is peaceful, dignified, and supported, and I would offer the family bereavement follow-up. [1]

The overarching lesson of this case is that advance care planning is best done before the crisis. The Brinkman-Stoppelenburg systematic review showed that advance care planning is associated with reduced use of life-sustaining treatment at the end of life and improved concordance between patient preferences and the care delivered [5]. Had Mrs Hayes had an advance care directive or a documented goals-of-care discussion, the son and the team would have had a clearer basis for the decision, and the conflict might have been avoided. As a quality-improvement measure, I would advocate for routine advance care planning in all residents of aged-care facilities, documented and accessible at the point of care."