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"What Bothers You the Most?" Initial Responses From Patients Receiving Palliative Care Consultation

Center for Ethics, Humanities, and Palliative Care, University of Rochester Medical Center, Rochester, New York, mindy_shah{at}urmc.rochester.edu

Timothy Quill, MD

Center for Ethics, Humanities, and Palliative Care, University of Rochester Medical Center, Rochester, New York

Sally Norton, PhD, RN

Center for Ethics, Humanities, and Palliative Care, University of Rochester Medical Center, Rochester, New York

Yvonne Sada, MD

Center for Ethics, Humanities, and Palliative Care, University of Rochester Medical Center, Rochester, New York

Marcia Buckley, RN, NP

Center for Ethics, Humanities, and Palliative Care, University of Rochester Medical Center, Rochester, New York

Charlotte Fridd, BS

Center for Ethics, Humanities, and Palliative Care, University of Rochester Medical Center, Rochester, New York

The purpose of this investigation is to describe how hospitalized palliative care patients respond to the question "What bothers you the most?" at the time of initial consultation. A retrospective descriptive content analysis of first person responses routinely recorded during initial interview (n = 286) was carried out. Responses were grouped in 7 major categories: physical distress (44%); emotional, spiritual, existential, or nonspecific distress (16%); relationships (15%); concerns about the dying process and death (15%); loss of function and normalcy (12%); distress about location (11%); and distress with medical providers or treatment (9%). Fifteen percent of responses were unable to be reliably categorized. Although many of our patients were not able to answer open-ended questions because of illness, those who did shared a wide range of concerns that provided a starting point for clinical prioritization. Further research into the use of such simple questions at time of initial consultation is warranted.

Key Words: palliative care • hospice • physician-patient relationship • end of life • death and dying

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