"I'm Sitting Here By Myself ... '': Experiences of Patients with Serious Illness at an Urban Public Hospital

School of Medicine, UCSF, San Francisco, California 94122, USA.
Journal of palliative medicine (Impact Factor: 1.91). 06/2010; 13(6):695-701. DOI: 10.1089/jpm.2009.0352
Source: PubMed


To describe experiences of serious illness including concerns, preferences, and perspectives on improving end-of-life (EOL) care in underserved inpatients.
Qualitative analysis of 1-hour interviews with inpatients at a public hospital whose physician "would not be surprised" by the patient's death or intensive care unit (ICU) admission within a year. Patients who were non-English speaking, lacked mental capacity, or had uncontrolled symptoms were excluded. A semistructured interview guide was developed and used for all interviews. We digitally recorded, transcribed, and conducted a thematic analysis of the interviews.
Twenty patients participated. Difficult events such as estrangement, homelessness, substance abuse, and imprisonment shaped patients' approaches to serious illness. This influence manifested in interpersonal relationships, conceptualizations of death and concerns about dying, and approaches to coping with EOL. Because patients lacked social support, providers played significant roles at EOL. Patients preferred honest communication with providers and sharing in medical decision-making. A prolonged dying process was feared more than sudden death. Concerns included pain, dying in the hospital, and feeling unwelcome in the hospital. Patients coped by advocating for their own care, engaging with religion/spirituality, and viewing illness as similar to past trauma. Participants suggested that providers listen to their concerns and requested accessible chaplaincy and home-based services.
Providers should consider that difficult life events influence underserved patients' approaches to dying. Attention to patients' specific preferences and palliative care in public hospitals and locations identified as home may improve care for patients who lack social support.

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    • "Lower socioeconomic groups are more likely than other socioeconomic groups, to require management of advanced disease [1]; have more complex social and economic needs [2,3]; have more limited awareness and understanding of the principles and practice of palliative care [4]; and were less likely to have a home death [5,6]. These factors indicate different demands and access outcomes for end-of-life care, an often neglected life stage in research on this population [2,3,7,8]. Understanding the experience of end-of-life care for lower socioeconomic groups is necessary, yet perhaps underappreciated amidst the palliative care discourse. End-of-life care consumes significantly the resources of all socioeconomic groups and yet does so disproportionately for individuals and families with the greatest limits of these resources. "
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