Full Code, Hospice, and a Son Who Holds the Proxy
A 71-year-old woman with metastatic pancreatic cancer has a prognosis of weeks. She tells the social worker she wants to die at home on hospice and does not want CPR or a feeding tube. Her son, who holds her durable power of attorney for health care and is her exhausted primary caregiver, insists on "full code" and wants her admitted to the hospital. Her daughter agrees with her mother. The physician notes that the patient is drowsy on escalating opioids and is sometimes mildly confused in the evening, and asks whether she has capacity. The son says, "She doesn't know what she's saying anymore."
1. How should decision-making capacity be assessed here?
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Capacity is decision-specific and time-specific, not a global trait, and it is assessed against the particular choice at hand - hospice vs. hospitalization, code status, artificial nutrition.
The standard four abilities should be evaluated and documented:
- Understanding of the relevant information: does she know her diagnosis, prognosis, and what CPR and a feeding tube would mean for her?
- Appreciation of how that applies to her: does she recognize that she is the person with this illness and these likely outcomes?
- Reasoning about alternatives: can she compare hospice at home with hospitalization and give reasons consistent with her values?
- Expressing a choice consistently.
Practical points: assess when she is most alert (morning, before opioid peak, with hearing and vision optimized); use teach-back rather than jargon; do not use a cognitive screen score as the test; involve the physician so the determination is medical and documented. Fluctuating delirium must be distinguished from decisional incapacity - evening confusion does not necessarily erase morning capacity, but it must be evaluated, not ignored.
If she demonstrates the four abilities when lucid, her contemporaneous decision governs, and the son's proxy authority is not activated.
2. How should the worker engage the son?
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The son is not an obstacle to be overruled; he is a grieving, exhausted caregiver whose position needs to be understood before it can be worked with.
- Separate his distress from the decision. "Full code" and hospitalization often mean "I am not ready, and I cannot be the one who lets her die." Name that gently; it is usually a relief to be understood.
- Assess caregiver burden concretely: his sleep, his work, his physical capacity to provide care, his fear of finding her dead or of being blamed by relatives.
- Educate about what hospice and DNR actually mean - hospice does not mean abandoning treatment; it means aggressive symptom management and support for the family, including respite. Many families hold inaccurate beliefs that hospice accelerates death or withholds food and water.
- Clarify his role as agent. If she has capacity, he has no authority to override her; when she loses capacity, his duty is to follow her known wishes, not to substitute his own.
- Use a structured family meeting with the physician and, if the conflict persists, an ethics consultation - offering it as support for the family rather than as an investigation of them.
The worker's stance is empathic to the son and unambiguously aligned with the patient's self-determination.
3. If the son continues to refuse hospice and insists on interventions the patient has declined, what should the social worker do?
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The worker should proceed in order of least intrusion, keeping the patient at the center.
- Re-confirm and document the patient's wishes while she has capacity, ideally with a witnessed conversation and a written directive or POLST consistent with state law. A clear, current statement is the strongest protection available.
- Ensure the treatment team is aligned and that the physician has documented the capacity determination and the goals-of-care discussion.
- Request an ethics consultation. This is the standard mechanism for intractable family–team conflict and often resolves it by giving the son a structured, respectful process.
- Involve the hospice or palliative team's social work and chaplaincy for the son's grief and any family mediation with the daughter.
- Consider whether the son's conduct is neglectful or financially abusive rather than merely conflictual. If he is withholding needed comfort care, or if there are signs of mistreatment, a report to adult protective services may be required - but conflict over goals of care is not, by itself, abuse.
- Consult legal counsel if the son attempts to use the power of attorney to direct against the patient's contemporaneous wishes; an agent acting outside the principal's known wishes can be challenged.
The worker advocates for the patient's expressed wishes without unilaterally overriding the family, and escalates through established channels while continuing to support the son.