Patient desires: A model for assessment of patient preferences for care of severe or terminal illness
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 patient discussion.
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 domain.
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.(Received November 6 2005)
(Accepted December 17 2005)
Key Words: Patient preferences; Palliative care; Hastened death; Desire to control disease; Desire to control suffering; Desire to control death; End of life; Systematic review; Model development.
c1 Corresponding author: Karen M. Knops, Medical Director of Palliative Care, Department of Internal Medicine, Morristown Memorial Hospital, 100 Madison Avenue, Morristown, NJ 07962, USA. E-mail: email@example.com