"I think that she would have wanted. . .": Qualitative interviews with bereaved caregivers reveal complexity in measuring goal-concordant care at the end of life.

BACKGROUND: Experts consider goal-concordant care an important healthcare outcome for individuals with serious illness. Despite their relationship to the patient and knowledge about the patient's wishes and values, little is known about bereaved family caregivers' perceptions of how end-of-life care aligns with patient goals and preferences. AIM: To understand caregivers' perceptions about patients' care experiences, the extent to which care was perceived as goal-concordant, and the factors that contextualized the end-of-life care experience. DESIGN: Qualitative interview study employing a semi-structured interview guide based on the National Health and Aging Trends Survey end-of-life planning module. Template analysis was used to identify themes. SETTING/PARTICIPANTS: Nineteen recently bereaved family caregivers of people with serious illness in two academic medical centers in the Northeastern United States. RESULTS: Most caregivers reported goal-concordant care, though many also recalled experiences of goal discordance. Three themes characterized care perceptions and related to perceived quality: communication, relationships and humanistic care, and care transitions. Within communication, caregivers described the importance of clear communication, inadequate prognostic communication, and information gaps that undermined caregiver confidence in decision making. Patient-clinician relationships enriched care and were considered higher-quality when felt to be humanistic. Finally, care transitions impacted goal discordance when marked by logistical barriers, a need to establish relationships with new providers, inadequate information transfer, and poor care coordination. CONCLUSIONS: Bereaved caregivers commonly rated care as goal-concordant while also identifying areas of disappointing and low-quality care. Communication, relationships and humanistic care, and care transitions are modifiable quality improvement targets for patients with advanced cancer.

"Remembrance": A Self-Care Tool for Clinicians.

Despite increasing attention in the medical and nursing literature about the importance of self-care for clinicians and the prevention of burnout, coping with the deaths of patients is an often-neglected component of clinical training. In this article, we describe the development of "Remembrance," an interdisciplinary approach to acknowledge and process the deaths of patients on our inpatient palliative care service, paying particular attention to how patients and their families affect us as clinicians. We believe that such a practice is an important component of both quality end-of-life care and clinician self-care, which should be routinely taught and incorporated into clinical services. We provide a template that summarizes our approach, which can be easily adapted by other hospitals to use.

The "Liaison" in Consultation-Liaison Psychiatry: Helping Medical Staff Cope with Pediatric Death.

Pediatric consultation-liaison clinicians are well positioned to provide support, guidance, and systemic recommendations about how to help medical clinicians cope with the stresses of working with dying children. Interventions to support sustainability in this work need to occur at the institutional and team-based levels as well as in individual practice. Shared clinical work around challenging cases provides opportunities to engage with medical clinicians about their difficult experiences and provide reflection and support. Psychiatry services may also be in a role of advocating for institutionally based interventions that can help their medical colleagues.

The Development of a Hospital-Wide Bereavement Program: Ensuring Bereavement Care for All Families of Pediatric Patients.

Although grief is a normal response to loss, the death of a child is believed to be one of the most difficult losses a person can endure, and bereaved parents are considered to be an "at-risk" group. Even though most deaths of children in the United States occur in hospitals, bereavement care provided by hospitals is highly variable, and little attention has been directed to how hospitals can best support grieving parents. In this article, we describe the development of a hospital-wide bereavement program at Boston Children's Hospital, where we conceptualize bereavement care as a preventive model of care. We identify the primary constructs of the program as education, guidance, and support and outline a template for use by other hospitals. We recommend that all pediatric hospitals implement basic, coordinated bereavement programs as the standard of care to ensure that all families receive bereavement care after the death of a patient.