Decision-making capacity, advance directives, refusal of treatment, and healthcare proxies
Respecting patient autonomy is not simply good practice — it is a legal and ethical obligation that shapes every clinical encounter. From the moment of admission through complex end-of-life decisions, home care clinicians must understand what autonomy requires, how to assess decision-making capacity, and how to honor client wishes even when those wishes are difficult to accept.
Decision-making capacity is the clinical determination that a client can make a specific decision at a specific time. It is not a global or permanent assessment — capacity is decision-specific and moment-specific. A client may have capacity for some decisions (e.g., which medication to take) but not others (e.g., a complex surgical decision). Capacity can fluctuate with time of day, medication, illness, and mood.
The four elements of capacity: the client can understand the relevant information, appreciate how it applies to their situation, reason about the options, and communicate a choice. Assessment is a clinical skill — in home care, the nurse is often the first to identify a capacity concern and the one who triggers appropriate evaluation.
Informed consent in home care is ongoing — not a one-time signature. At each visit, clients implicitly or explicitly consent to the care provided. For significant new procedures or care plan changes, explicit verbal or written consent is required. The elements of valid consent: disclosure of relevant information in understandable language, verification that the client understands, confirmation that the decision is voluntary (no coercion), evidence of decision-making capacity, and a decision (consent or informed refusal).
Advance directives allow clients to document their healthcare wishes for future situations when they cannot speak for themselves. Two main types: living wills (specific treatment preferences — CPR, mechanical ventilation, artificial nutrition) and durable power of attorney for healthcare (designates a proxy decision-maker). POLST/MOLST forms (Physician/Medical Orders for Life-Sustaining Treatment) translate advance directives into actionable medical orders.
Home health clinicians should: confirm advance directives are present and on file at intake, ensure a copy is accessible in the home, know whether a DNR/DNI order is in place, and ensure all caregivers in the home know where the document is located. In an emergency, EMS will honor a POLST if it is available and valid.
A competent adult has the absolute right to refuse any treatment, including life-sustaining treatment, even if that refusal will result in death. The clinician's role is not to override this right but to ensure: the client has the information needed to make an informed refusal, the refusal is documented thoroughly (what was refused, information provided about risks, that the client expressed understanding), the supervising clinician is notified, and the client is not abandoned. The client's right to refuse does not end the therapeutic relationship.
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