"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: 2.06). 06/2010; 13(6):695-701. DOI: 10.1089/jpm.2009.0352
Source: PubMed

ABSTRACT 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.

1 Follower
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group.
    BMC Palliative Care 06/2014; 13:30. DOI:10.1186/1472-684X-13-30 · 1.79 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: It is necessary to develop palliative care to meet existing and future needs of patients and their families. It is important to include knowledge of patient preferences when developing high-quality palliative care services. Previous reviews have focused on patient preferences with regard to specific components of palliative care. There is a need to review research on patient's combined preferences for all elements that constitute palliative care. The aim of this study is to identify preferences for palliative care among patients in the palliative phase of their illness, by synthesizing existing research. Studies were retrieved by searching databases - the Cochrane Library, Medline, CINAHL, PsycINFO, Scopus and Sociological Abstracts - from 1946 to 2014, and by hand searching references in the studies included. A systematic mixed studies review was conducted. Two reviewers independently selected studies for inclusion and extracted data according to the eligibility criteria. Data were synthesized using integrative thematic analysis. The 13 qualitative and 10 quantitative studies identified included participants with different illnesses in various settings. Four themes emerged representing patient preferences for care. The theme 'Living a meaningful life' illustrated what patients strived for. The opportunity to focus on living required the presence of 'Responsive healthcare personnel', a 'Responsive care environment' and 'Responsiveness in the organization of palliative care'. The four themes may be useful for guiding clinical practice and measurements of quality, with the overall goal of meeting future needs and improving quality in palliative care services to suit patients' preferences. © The Author(s) 2015.
  • [Show abstract] [Hide abstract]
    ABSTRACT: Objective: Optimal communication is essential in ensuring that the palliative care needs of patients are met. This continues to be an area of concern for healthcare providers. The goal of our present review was to gain a deeper understanding of the communication experiences of patients with palliative care needs that have been identified within the qualitative literature. Method: A systematic search for qualitative research papers was undertaken in February of 2012. Five databases (ASSIA, CINAHL, MEDLINE, PsychArticles, and PsychINFO) were searched using the search terms ["palliative care" OR "terminal care" OR "end of life care"] AND ["experience" OR "perspective" OR "qualitative" OR "interview"] AND ["patients" OR "clients" OR "service-user"]. Meta-synthesis was conducted on the data within the found papers. Results: A line-of-argument synthesis of 15 studies yielded four overarching themes: talking-facilitating and inhibiting factors; the importance of humanitarian qualities within communication encounters; perceptions of autonomy within communication experiences; and individual differences in preferences for honesty within interactions. Significance of results: Our findings are discussed in relation to existing literature and offer a deeper insight into the communication experiences of this clinical population. A number of clinical implications are offered for the healthcare professionals who are providing support to patients with palliative care needs.
    Palliative and Supportive Care 05/2014; DOI:10.1017/S1478951514000455 · 0.98 Impact Factor

Full-text (2 Sources)

Available from
May 27, 2014