What approach is recommended for medical decision making in families?

Shared Decision Making: The Recommended Approach for Medical Decision Making in Families

Shared decision making should be the primary model for medical decision making in families, forming a genuine partnership among healthcare teams, patients, and their loved ones to ensure decisions align with patients' values and preferences while incorporating clinical expertise.

Understanding Shared Decision Making in Families

Shared decision making (SDM) has emerged as the preferred approach to medical decision making, replacing older models that either placed full responsibility on patients/surrogates (patient autonomy model) or gave complete authority to physicians (paternalistic model). This evolution recognizes that:

• The autonomy model can place undue burden on families during crisis situations, potentially feeling like abandonment 1
• Patients and surrogates often need more decision-making help than the pure autonomy model allows 1
• Most families in both North America and Europe prefer sharing the authority and burden of decision making with clinicians 1

Ethical Justification for Shared Decision Making

Several ethical principles support the shared decision making approach:

• Respect for persons: Involving patients in decisions demonstrates respect for their autonomy 1
• Clinical expertise: Clinicians contribute valuable medical knowledge and experience with difficult choices 1
• Family values: Involving family members allows incorporation of patients' values and previously expressed preferences 1
• Respect for family unit: Family involvement acknowledges the importance of family in most societies 1

When to Use Shared Decision Making

Shared decision making should be employed for:

• Defining overall goals of care
• Making major treatment decisions affected by personal values, goals, and preferences
• Decisions regarding limiting or withdrawing life-prolonging interventions 1

For routine clinical decisions (e.g., checking vital signs, laboratory tests, fluid administration), once goals of care are established, clinicians can appropriately implement evidence-based practices without formal shared decision making for each action 1.

The Shared Decision Making Process

1. Information Exchange

• Clinicians share: Treatment options, risks, and benefits
• Patients/surrogates share: Patient's values, goals, and preferences relevant to the decision 1

2. Deliberation

• Both parties discuss which option best serves the patient
• Process includes sharing opinions, asking questions, correcting misperceptions, and explaining perspectives 1

3. Decision Making

• Clinicians and patients/surrogates agree on the decision to implement 1

Implementing Shared Decision Making Effectively

Establish Partnership Early

• Schedule family meetings with the multiprofessional ICU team within 24-48 hours of admission
• Introduce the clinical team, explain roles, and express commitment to patient/family-centered care
• Consider inviting family members to participate in daily rounds 1

Provide Emotional Support

• Address emotions before and during decision making
• Acknowledge strong emotions and express empathy, which has been associated with decreased anxiety and higher satisfaction 1

Assess Understanding

• Begin by eliciting the patient's/surrogate's understanding of the situation
• Tailor information delivery based on their level of comprehension 1

Explain Medical Condition and Prognosis

• Provide clear information about the patient's condition and prognosis
• Address common misunderstandings or overly optimistic expectations 1

Special Considerations

Patients Without Family or Designated Surrogates

• This represents a significant challenge affecting approximately 16% of ICU patients and 3% of nursing home residents 2
• Current approaches include hospital ethics committees, court-appointed surrogate agents, and advance directives when available 2
• These situations often result in longer hospital stays, higher healthcare costs, and potentially more aggressive interventions 2

Family Dynamics in Decision Making

• Families play three key roles in medical decision making: supporting the patient, being affected by the decision, and advocating for autonomy 3
• Family is a significant moral participant in medical decision making 3
• Consideration of non-medical burdens related to family roles and relationships often takes equal or higher priority than medical burdens 3

Cultural Considerations

• Cultural attitudes of patients and families need to be addressed and respected 1
• Family norms for decision making differ across cultures 4
• Many individuals weigh their family members' preferences and well-being heavily in making medical decisions 4

Potential Pitfalls and How to Avoid Them

Dominating Family Members

• Recognize that family influence is not necessarily autonomy-limiting unless it involves credible threats or abuse 4
• For patients wanting to assert themselves, clinicians can help amplify their voice in family meetings 4
• Emotional statements from family members (e.g., "I won't let you give up") may reflect grief rather than true intent 4

Overreliance on One Model

• Modify the default shared decision making approach based on individual case needs and preferences 1
• Recognize that some patients may prefer more or less involvement in decision making

Neglecting to Explain Routine Care

• Even for routine procedures, someone on the treatment team should explain what care is being given and why
• Use informational pamphlets and videos to facilitate understanding 1
• Emphasize that patients and families are welcome to ask questions about any aspect of care 1

By implementing a structured shared decision making approach that respects both patient autonomy and family involvement while incorporating clinical expertise, healthcare providers can ensure medical decisions align with patients' values and preferences, ultimately improving patient outcomes and satisfaction.