Objective: Patient-centered care is better achieved through a
comprehensive understanding of patients' preferences for how they
want to live their life and how they want to influence their own death.
Though much has been written on identifying goals of care, it is often
difficult for clinicians to articulate patient goals to guide care
planning. We explored the literature on patient's preferences for
their care in chronic or life-limiting illness to develop a model for
assessment of patient perspectives. We then illustrated our model with
composite patients from our clinics and we provide questions to guide
Methods: We searched MEDLINE from 1986 to 2004 for primary
research articles that relate primarily to a patient's preferences
for his or her care. We reviewed over 3500 titles, abstracts, and research
papers. Hundreds of articles described patients' quality of life,
health status, or satisfaction. We excluded consensus guidelines,
non-English papers, reviews, and articles focused on medical professional
perspectives. Forty-eight studies focused primarily on patient
preferences. Using an iterative process, we identified unique issues and
broader themes in patients' desires for their care.
Results: Studies focused on patients with cancer, those in
hospice or those with terminal disease. Three domains emerged: patient
feelings about disease, feelings about suffering, and feelings about the
circumstances of death. Attention was given to the differences between
patients in terms of the strength and persistence of feelings in each
Significance of results: Based on existing data, there are
three fundamental domains of patient perspective that influence
preferences for care. These domains can be assessed by the care team to
guide the development of a plan of care and to identify areas of conflict.
Our review identifies gaps in the end-of-life literature and areas for
future work in patient preferences.