End-of-Life Care and Advance Care Planning — Clinical Case

DCE Long Case

Patient brief (provided to trainee)

Mr Robert Whitlam is an 82-year-old retired engineer who lives at home with his wife, Margaret. He has ischaemic heart failure — NYHA IV, ejection fraction 20 per cent on a recent echocardiogram — chronic kidney disease with an eGFR of 25, type 2 diabetes, and previous coronary bypass grafting. His medications include bisoprolol, ramipril, spironolactone, furosemide 80 mg daily, metformin, atorvastatin, and aspirin. He has been increasingly breathless on minimal exertion and has had three hospital admissions for decompensated heart failure in the past six months. [1]

He is admitted from the emergency department with a further decompensation: orthopnoea, bilateral leg swelling, and a weight gain of 4 kg. His examination shows a raised jugular venous pressure, bilateral crackles to mid-zones, and pitting oedema to the thighs. His chest X-ray shows pulmonary oedema. He is treated with intravenous furosemide and responds well; by day 3 of the admission his breathlessness has improved and his weight has fallen by 3 kg. [1]

On day 3, the registrar notes that Mr Whitlam has no advance care directive, no documented goals-of-care discussion, and no identified substitute decision-maker in the medical record. Mr Whitlam has full capacity. His wife Margaret and their adult daughter Susan are at the bedside. Susan, who lives interstate and has not been present for the previous admissions, is visibly distressed and tells the registrar that she wants her father to have everything done if he gets worse. [1]

Candidate's tasks

1. Present a structured opening statement (SASPOP) and a prioritised problem list.
2. Explain why advance care planning should be initiated now, and cite the evidence.
3. Describe how you would conduct the goals-of-care conversation with Mr Whitlam and his family.
4. Outline the content of an advance care plan and the proposed ceiling of treatment.
5. Discuss how you would address Susan's demand for everything to be done.
6. Discuss the principles of prognosis discussion with the patient.
7. Describe the communication, documentation and follow-up. [1]

Model opening statement and problem list

"Mr Robert Whitlam is an 82-year-old retired engineer with end-stage ischaemic heart failure — NYHA IV, ejection fraction 20 per cent — chronic kidney disease with an eGFR of 25, type 2 diabetes and previous coronary bypass grafting, who is admitted with his third decompensation in six months and who, after a good response to intravenous diuretics, is now stable on the ward and presents the team with the question of how to manage his end-of-life trajectory prospectively, while he still has capacity and before the next crisis. [1]

His main problems are:

1. End-stage heart failure with a one-year mortality in excess of 30 per cent — the trajectory that drives the end-of-life question.
2. Chronic kidney disease complicating the heart failure and limiting the disease-directed therapy.
3. The complete absence of advance care planning — no directive, no documented goals of care, no identified substitute decision-maker.
4. His preserved capacity — the window in which the advance care planning conversation must be held.
5. Family dynamics — a supportive wife and a distressed interstate daughter who is demanding everything be done — which must be addressed in the goals-of-care conversation. [1]

My integrated plan is: first, to continue his guideline-directed medical therapy and optimise his heart failure management before discharge; second, to recognise that he triggers a 'no' answer to the Surprise Question and to initiate advance care planning now, while he has capacity; third, to hold a structured goals-of-care conversation with Mr Whitlam and his family using the SPIKES protocol and the Serious Illness Conversation Guide; fourth, to document an advance care plan and, if he wishes, an advance care directive; fifth, to propose a ceiling of ward-based active treatment with no escalation to intensive care and no cardiopulmonary resuscitation, while continuing disease-directed therapy and active symptom control; sixth, to address Susan's distress and the family dynamics through honest prognostic information and a reframe of the comfort-focused plan; and seventh, to involve the palliative care team and arrange follow-up and communication to the GP." [1]

Why advance care planning should be initiated now — the evidence

"Mr Whitlam triggers a 'no' answer to the Surprise Question — I would not be surprised if he died in the next 12 months. He has end-stage heart failure with repeated decompensations, which carries a one-year mortality in excess of 30 per cent, compounded by chronic kidney disease. The Surprise Question is the trigger for advance care planning, and the conversation must be held while he has capacity — once he loses capacity in a crisis, the decision about escalation is forced at three in the morning, without his voice. [1]

The evidence supports acting on the trigger. Detering's randomised trial of facilitated advance care planning in medical inpatients aged 80 and over showed that end-of-life wishes were far more likely to be known and respected in the intervention group (86 per cent versus 30 per cent), with reduced stress, anxiety and depression in bereaved relatives and higher family satisfaction [2]. Wright's cohort study in advanced cancer showed that end-of-life discussions were associated with less aggressive care in the final week and no increase in depression, and that more aggressive care near death was associated with worse quality of life and more major depressive disorder in bereaved caregivers [3]. The Brinkman-Stoppelenburg systematic review confirmed that advance care planning reduces life-sustaining treatment at the end of life, increases hospice and palliative care use, and improves concordance between preferences and care, with complex facilitated planning outperforming a directive alone [1]. The Temel trial showed that early palliative care in advanced lung cancer improved quality of life, reduced depression, and prolonged survival [4] — palliative care is not only for the imminently dying. The SUPPORT trial, conversely, demonstrated the failure of aggressive end-of-life care in advanced disease to improve outcomes [9]."

The goals-of-care conversation

"I would use a structured conversation combining the goals-of-care framework with the SPIKES protocol for delivering bad news [6][7].

Setting: A quiet, private room, with Mr Whitlam and the family members he wishes present (his wife Margaret and, if he agrees, his daughter Susan), the senior clinician and a nurse, enough time, and no interruptions. I sit down. [1]

Perception: I ask what he and the family understand about his heart failure and its trajectory — 'Tell me what you understand about your heart condition and how it has been going.' This establishes the baseline and surfaces any misconceptions. [1]

Invitation: I ask how much detail he wants about the prognosis and the options, and I respect his right to defer to his family if he prefers. [1]

Knowledge: I give honest information in plain language — that his heart failure is advanced and progressive, that the repeated admissions indicate the disease is no longer responding well to treatment, and that this is the time to think together about what matters most and what he would want if he became more unwell. I use a warning shot ('I'm afraid the news is more serious than we might have hoped'). [1]

Empathy: I acknowledge the emotion, name it, and stay with it — I allow silence rather than rushing to a plan. [1]

Summarise and Strategise: I summarise what was said, check understanding, and agree the next steps and a follow-up conversation. [1]

Within that frame I use the questions of the Serious Illness Conversation Guide to elicit his values and goals [7]: what matters most to him now; what he is willing and not willing to go through; what he would consider an acceptable outcome; if he could not speak for himself, who he would want to make decisions. I listen carefully for his treatment preferences regarding cardiopulmonary resuscitation, mechanical ventilation, artificial hydration, and admission to intensive care, and for his preferred place of care and death."

The advance care plan and the ceiling of treatment

"The advance care plan documents, from the conversation: his understanding of his illness and prognosis; his values and goals — what makes life worth living, what outcomes he would find unacceptable; his treatment preferences — what he would and would not want, specifically addressing cardiopulmonary resuscitation, mechanical ventilation, artificial hydration and nutrition, and admission to intensive care; his preferred place of care and death; the appointment of a substitute decision-maker (his wife Margaret as enduring guardian, if he agrees); and the date and the plan for review. If he wishes, I would support him to complete a formal advance care directive that legally documents his refusal of specific treatments — a valid refusal is binding and must be honoured even after capacity is lost. [1]

I would propose, in discussion with the patient and family, a ceiling of ward-based active treatment with no escalation to intensive care and no cardiopulmonary resuscitation, focused on symptom control and quality of life. Within that ceiling he continues to receive optimal guideline-directed medical therapy for the heart failure, a trial of intravenous diuretics for a decompensation, supplemental oxygen for symptomatic hypoxaemia, and treatment of reversible precipitants. What the ceiling excludes is admission to intensive care, mechanical ventilation, inotropic support in cardiogenic shock without a reversible cause, and cardiopulmonary resuscitation in cardiac arrest. [1]

The defining principle is that the ceiling is not a withdrawal of care. The patient continues to receive active treatment within the agreed limits and full symptom control — the phrase is do not resuscitate, but do not abandon [8]. Withholding and withdrawing life-sustaining treatment are ethically and legally equivalent, and there is no obligation to provide futile treatment; where there is genuine prognostic uncertainty I would start an intervention as a trial and review. I would document the ceiling as a medical order, communicate it to the team, the ambulance service and the GP, and review it at each admission and each major functional decline."

Addressing the daughter's demand for everything

"Susan's demand that everything be done is a common and important family response, and it is usually an expression of love and a fear of letting go rather than a considered clinical preference. My approach is to acknowledge her grief and her love for her father directly; to reframe the comfort-focused plan as an act of care consistent with what he would want, by reference to the advance care plan and the documented conversation; and to provide honest prognostic information about the likely outcome of intensive care in his end-stage heart failure — a very low chance of survival to discharge and a high chance of a prolonged, distressing death. The SUPPORT trial demonstrated the failure of aggressive end-of-life care in advanced disease to improve outcomes [9].

I would specifically address the guilt that families feel when agreeing to a comfort-focused plan — I would say that choosing comfort is not giving up, it is an act of love in keeping with what her father would have wanted. I would offer time, a follow-up family meeting, and the involvement of the palliative care team and the social worker. The decision is not forced through against the family — it is worked through together. [1]

If Susan remains distressed and there is genuine conflict between her and the team, the escalation pathway is a second senior medical opinion, the hospital clinical ethics service, and finally the guardianship tribunal. Throughout, the patient continues to receive active treatment within the current ceiling and full symptom control. In practice, most of these conflicts resolve with time, honest information, and a structured conversation." [1]

Prognosis discussion

"I discuss prognosis honestly, using the hope-for-the-best, prepare-for-the-worst frame. I ask first how much detail he wants — some patients want a number, some a range, some only the gist. I give a range rather than a point estimate: with his NYHA IV heart failure and chronic kidney disease, the median survival is measured in months rather than years, and a realistic statement is 'weeks to a few months rather than years' if he continues to decompensate at this rate. I acknowledge uncertainty explicitly — I cannot give an exact number, and I will be honest with him as we learn more. I avoid false reassurance, which destroys trust when the prognosis declares itself, and brutal honesty without support, which abandons him to despair. I connect the prognosis to goals — once he knows the trajectory, I ask what matters most with the time that remains [7]."

Communication, documentation and follow-up

"I document the capacity assessment, the goals-of-care conversation, the agreed ceiling, the advance care plan and (if completed) the advance care directive. I document the ceiling as a medical order on the goals-of-care form, and I communicate it to the ward team, the ambulance service, the GP, and (if he agrees) his residential facility. I involve the palliative care team for symptom control and family support. I arrange a follow-up family meeting and a clinic review, and I offer the family bereavement support resources prospectively. [1]

The overarching lesson of this case is that advance care planning is best done before the crisis. Had Mr Whitlam had an advance care directive or a documented goals-of-care discussion, the daughter's distress and the team's uncertainty would have been mitigated, and the next decompensation would not force an escalation decision in the middle of the night. As a quality-improvement measure, I would advocate for routine advance care planning in all patients who trigger a 'no' to the Surprise Question — advanced heart failure, advanced COPD, metastatic cancer, advanced dementia, and frail elderly patients — documented and accessible at the point of care [1][2]."