Advanced Heart Failure, an ICD, and Conflict With the Health Care Agent
An 85-year-old man with New York Heart Association class III–IV heart failure, ejection fraction 25%, stage 4 CKD (eGFR 22), and an implantable cardioverter-defibrillator placed 4 years ago for primary prevention has had three admissions in 6 months for dyspnea, with inotropes twice. He says, “Do everything; I’m not ready to go.” His daughter, who is his health care agent, says, “He would never want to live like this; he told me he doesn’t want shocks.” He is alert and oriented, can name his medications and his daughter, but does not know his creatinine or prognosis. He becomes tearful when asked about dying. The team asks about hospice and deactivating the ICD.
1. How would you explore his goals of care without simply accepting or overriding “do everything”?
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Clarify what “do everything” means to him rather than treating it as a refusal to discuss goals.
- Ask open-ended questions: “What has been hardest about these hospital stays?” “What does a good day look like?” “What are you hoping for?” “What worries you most?”
- Explore fears: pain, breathlessness, dependence, being a burden, dying alone, or dying suddenly.
- Distinguish treatments: CPR, intubation, dialysis, inotropes, hospitalization, and ICD shocks. “Everything” rarely means every possible intervention once explained.
- Address the ICD specifically: shocks can occur while dying and cause distress. Deactivation is not euthanasia; it allows the underlying disease to take its course.
- Screen for depression and treat breathlessness and symptoms; untreated depression and fear can distort goals.
- Summarize and reflect: “It sounds like you want to live as long as possible, but you also don’t want to be shocked or suffer. Did I get that right?”
The reasoning: goals are not a single choice but a hierarchy of what matters. The discussion should be paced, documented, and revisited.
2. The patient has capacity, but his daughter disagrees with his stated wishes. How do you resolve the conflict?
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With capacity, the patient’s current wishes control, not the agent’s interpretation. However, conflict should be managed, not dismissed.
- Confirm capacity for the specific decision; his orientation and medication knowledge support capacity, but assess understanding and appreciation of the ICD and prognosis.
- Meet with both together and separately. Ask the daughter what she heard him say and when. A prior statement that he “doesn’t want shocks” must be weighed against his current statement.
- Clarify misinformation: he may not know that deactivation does not cause immediate death and that hospice does not mean abandoning treatment.
- Explore the daughter’s fear and grief; she may be afraid of “giving up” or of being blamed.
- Document the patient’s own words, the options discussed, and the decision. If conflict persists, involve palliative care or ethics consultation.
The reasoning: a health care agent speaks for a patient who lacks capacity. When the patient has capacity, the agent’s role is advisory. The team should support the daughter without allowing her to override him.
3. What should you tell them about hospice and ICD deactivation, and what needs to be documented?
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Explain hospice as aggressive symptom management for a limited prognosis, not as a requirement to stop all care. Eligibility generally requires a prognosis of 6 months or less if the disease follows its usual course, but the specific determination is clinical.
About the ICD:
- Deactivation is a planned withdrawal of a specific treatment, ethically and legally distinct from assisted dying.
- It prevents shocks but does not stop the heart or cause immediate death.
- Some patients want the pacemaker function retained while shocks are disabled; clarify device settings with electrophysiology.
- If he wants to keep the ICD active, respect that and plan how to manage shocks at end of life.
Document: the patient’s goals and values, his understanding of prognosis, the specific decisions about ICD, CPR, hospitalization, and inotropes, the daughter’s concerns, and who was present. Send the summary to the primary team and palliative care. Revisit the plan because preferences can change.