BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process.

Involving patients and families in mental healthcare is becoming more commonplace, but little is known about how they are involved in the aftermath of serious adverse events related to quality of care (sentinel events, including suicides). This study explores the role patients and families have in formal processes after sentinel events in Dutch mental healthcare. We analyzed the existing policies of 15 healthcare organizations and spoke with 35 stakeholders including patients, families, their counselors, the national regulator, and professionals. Respondents argue that involving patients and families is valuable to help deal with the event emotionally, provide additional information, and prevent escalation. Results indicate that involving patients and families is only described in sentinel event policies to a limited extent. In practice, involvement consists mostly of providing aftercare and sharing information about the event by providers. Complexities such as privacy concerns and involuntary admissions are said to hinder involvement. Respondents also emphasize that involvement should not be obligatory and stress the need for patients and families to be involved throughout the process of treatment. There is no one-size-fits-all strategy for involving patients and families after sentinel events. The first step seems to be early involvement during treatment process itself.

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