What is the best approach for an elderly patient with potential underlying chronic conditions or dementia when the family declines hospitalization or treatment?

Documentation When Family Declines Hospitalization or Treatment for Elderly Patients

Document the family's decision clearly in the medical record, including the specific treatments declined, the rationale discussed, and confirmation that the family understands the risks and potential consequences of refusing care. 1

Immediate Documentation Requirements

Create a clear, transferable record that includes:

• Specific treatments or interventions declined (e.g., hospitalization, antibiotics, feeding tubes, CPR) 1
• Date and time of the discussion 1
• Names of family members or surrogate decision-makers present 1
• Patient's current clinical status and any acute changes 1
• Risks and benefits explained to the family 1
• Family's stated reasons for declining treatment 1

Ensure documentation is accessible digitally to all care agencies and personnel (including emergency physicians) who may encounter the patient in acute situations. 1

Essential Clinical Assessment to Document

Before accepting the family's refusal, systematically rule out and document assessment of:

• Pain (arthritis, constipation, urinary retention, pressure ulcers, dental problems) 2
• Acute medical conditions (infection, dehydration, delirium) 1, 2
• Changes in functional status or behavior 1
• Current medications and potential adverse effects 2

This documentation protects against the assumption that refusal is purely behavioral when treatable medical causes exist. 2

Advance Care Planning Documentation

Review and document existing advance directives if available, including:

• Previously expressed wishes by the patient before cognitive decline 1
• Designated surrogate decision-maker and their authority 1
• Do-not-resuscitate (DNR) and do-not-hospitalize (DNH) orders 3
• Preferred place of death (familiar environment typically preferred over hospital) 1

If no advance care plan exists, document that the family is making decisions as surrogate and note whether these align with what is known about the patient's values. 1 Families may feel more confident making end-of-life decisions when they know the patient's previously expressed wishes. 1

Interprofessional Team Communication

Document discussions with the interprofessional care team, including:

• Nurses, physicians, elderly care specialists, and palliative care consultants 1
• Goals of care established collaboratively 1
• Whether the team agrees the family's decision aligns with patient-centered care principles 1

Complex decisions about hospitalization should be discussed jointly within the team, not made in isolation. 1

Prognosis and Patient-Centered Context

Frame the documentation within the patient's prognosis:

• Remaining life expectancy and functional status 1
• Whether time horizon to benefit from proposed treatments exceeds projected lifespan 1
• Quality of life considerations 1
• Risk of treatment-related harms (polypharmacy, drug interactions, hospitalization complications) 1

For elderly patients with dementia and multiple comorbidities, hospitalization may cause more harm than benefit through delirium, functional decline, and exposure to nosocomial infections. 1

Legal and Ethical Documentation

Document that the family has the legal right to refuse medical therapies on behalf of an incapacitated patient. 2, 4 However, also note:

• The patient retains the right to palliative care and adequate relief of suffering regardless of treatment refusal 1
• Refusal of life-sustaining treatment does not mean refusal of comfort care 1, 4
• The family was informed about available palliative and comfort measures 1

Specific Treatment Refusals to Document

For feeding tube refusal: Document that hand feeding by caregivers is at least as effective as tube feeding for outcomes including death, aspiration pneumonia, functional status, and comfort. 2, 4 Feeding tubes are not recommended for advanced dementia. 2

For hospitalization refusal: Document potential scenarios discussed (infection, falls, acute illness) and that the family understands care will focus on comfort at current location. 1

Follow-Up Documentation Plan

Schedule and document follow-up conversations to:

• Reassess the family's decision as the patient's condition changes 1
• Address psychosocial or spiritual needs that arise 1
• Identify anticipatory grief and provide bereavement preparation 1
• Revise care goals if circumstances change 1

Care goals should be revisited regularly, not treated as static decisions. 1

Critical Documentation Pitfalls to Avoid

Never document vague statements like "family wants comfort care only" without specifying which interventions are accepted or declined. 1

Never document the refusal without noting that you explained the medical rationale for the recommended treatment and the risks of declining it. 1 This protects against claims of inadequate informed consent.

Never fail to document that the family understands this is a preference-sensitive decision where reasonable people might choose differently. 1 The family should not feel coerced or judged for their decision.

Never document only the family's perspective without including the clinical team's assessment of whether the decision aligns with the patient's best interests and previously expressed values. 1, 3