“I'm Sitting Here By Myself …”: Experiences of Patients with Serious Illness at an Urban Public Hospital

Abstract

Objective: To describe experiences of serious illness including concerns, preferences, and perspectives on improving end-of-life (EOL) care in underserved inpatients. Methods: 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. Results: 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.

Patient and family experiences of palliative care in hospital: What do we know? An integrative review

“…39 The remaining thirteen studies included patients from a variety of different diagnostic groups. [40][41][42][43][44][45][46][47][48][49][50][51][52] Seven studies used data from the Study to Understand Prognoses and Preferences for…”

Factors associated with nurses’ perceptions about quality of end‐of‐life care

“…), lack of dignity (Dzul‐Church et al. ), lack of privacy and an inadequate hospital environment (Bloomer et al. ).…”

“…Previous studies have shown that in general, the quality of EOLC in hospital settings is inadequate and that standards of care are not always achieved: patients dying in these settings have often not received the best evidence-based palliative care (Gott et al 2011). These studies have found that the most important factors contributing to poor quality of EOLC are nurses' level of knowledge and attitudes regarding EOLC (Bloomer et al 2013), difficulties in diagnosing dying patients, the changing role of nursing staff, hospital culture (Gagnon & Duggleby 2014), lack of open communication (McCourt et al 2013), lack of information about the patient's situation and prognosis (Beccaro et al 2010), lack of dignity (Dzul-Church et al 2010), lack of privacy and an inadequate hospital environment (Bloomer et al 2013).…”

Public Hospital Palliative Social Work: Addressing Patient Cultural Diversity and Psychosocial Needs

“…In a study of seriously ill patients' perceptions of their illness and care at the end of life, Grudzen et al (2011) found patients with advanced illness presented to the Emergency Department (ED) of a public hospital when symptoms are out of control. Secondly, patients seeking care at public hospitals generally require more intensive, tailored approaches to care given prolific difficult life events and minimal social support (Dzul-Church, Cimino, Adler, Wong, & Anderson, 2010). Both studies underscore the challenges as well as the value and importance of providing palliative care services to marginalized patients in public hospitals.…”