Family Perceptions of Prognosis, Silence, and the “Suddenness” of Death

Abstract

Studies of end-of-life communication and care have emphasized physician-patient conversations, often to the exclusion of family members' discussions and interactions with providers, or with patients themselves. Relatively little is known therefore about families' experiences of end-of-life care in the hospital, or the concrete meanings and practices through which families conceive and define communication. Yet increasingly, family members are asked to serve as surrogates and thereby to participate in the facilitation of decisions for medical procedures and the withdrawal of treatments. It is thus worthwhile to consider their perceptions and involvement in hospitalization at the end of life. This paper offers a descriptive account of families' assessments of communication at life's end in the hospital--focusing in particular on their understandings of and conversations about prognosis and its implications. It reflects on the burdens of responsibility and regret posed to families by the ways communication is both conceived and evaded by different players in the hospital setting.

“Maybe They Don't Even Know That I Exist”: Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease

“…Our findings echo the jarring and asynchronous patterns of interaction with the health care system described almost two decades ago by bioethicist Carol Levine, who noted how her visibility as a caregiver varied depending on how sick her disabled husband was (38). The strong role of the health care system in scripting interactions with patients' family members and friends noted in our study also resonates with findings of anthropologists Ann Russ and Sharon Kaufman (23). A bereaved wife enrolled in their study recalled how she would receive a phone call from the hospital "whenever they wanted consent for something" but otherwise had great difficulty reaching her husband's providers.…”

“…At the same time, the intensity of inpatient care during the final months of life continues to escalate, and the menu of different "life-prolonging" procedures offered late in the course of illness continues to expand (1,8,(10)(11)(12)(13)(14)(15)(16). Because many patients are unable to participate in medical decision-making as they approach the end of life (17), their family members and friends must now engage with the health care system in ways unimaginable for previous generations, assisting with ever more complex medical care and treatment decisions (17)(18)(19)(20)(21)(22)(23)(24).…”

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…106 In a critical situation, many patients and their families may look to professionals for information, and also guidance. 49,67,81,101,107,108 Far from being 'empowering' for patients and their families, responsibility for decisions of great difficulty and significance may be experienced as burdensome and subsequently subject to uncertainty and regret. 101,[109][110][111] Many studies describe the caution and circumspection that professionals employ when seeking cues about patient receptivity to ACP.…”

“…49,67,81,101,107,108 Far from being 'empowering' for patients and their families, responsibility for decisions of great difficulty and significance may be experienced as burdensome and subsequently subject to uncertainty and regret. 101,[109][110][111] Many studies describe the caution and circumspection that professionals employ when seeking cues about patient receptivity to ACP. 67,87,88 Open questions may be used as opportunities, or 'offers', which patients may elect to take up or ignore, and the use of 'hypothetical' questions and scenarios may soften the impact of confronting difficult issues directly.…”

Factors Predicting Bereaved Caregiver Perception of Quality of Care in the Final Week of Life: Implications for Health Care Providers

“…Caregiver priorities for high-quality EOL care typically include shared decision making, communication about patient wishes, awareness of prognosis, preparation for death, and avoiding prolonged death or suffering. 1,[15][16][17][18] The few existing instruments that measure quality of EOL care typically elicit the patient's experience rather than that of the caregiver. [19][20][21][22][23] Those that do assess caregivers, including the After-Death Bereaved Family Member Interview from the Toolkit of Instruments to Measure End-of-Life Care (TIME), 24 have omitted key factors of patient suffering and prolongation of death.…”