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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.

Corresponding author
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:
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Akechi, T., Okamura, H., Yamawaki, S., et al. (2001). Why do some cancer patients with depression desire an early death and others do not?Psychosomatics, 42, 141145.

Breitbart, W., Rosenfeld, B., Pessin, H., et al. (2000). Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA, 284, 29072911.

Brundage, M.D., Feldman-Stewart, D., Cosby, R., et al. (2001). Cancer patients' attitudes toward treatment options for advanced non-small cell lung cancer: Implications for patient education and decision support. Patient Education and Counseling, 45, 149157.

Chater, S., Viola, R., Paterson, J., et al. (1998). Sedation for intractable distress in the dying—A survey of experts. Palliative Medicine, 12, 255269.

Chen, H., Haley, W.E., Robinson, B.E., et al. (2003). Decisions for hospice care in patients with advanced cancer. Journal of the American Geriatric Society, 51, 789797.

Chochinov, H.M., Hack, T., Hassard, T., et al. (2002). Dignity in the terminally ill: A cross-sectional, cohort study. Lancet, 360, 20262030.

Chochinov, H.M., Tataryn, D., Clinch, J.J., et al. (1999). Will to live in the terminally ill. Lancet, 354, 816819.

Claessens, M.T., Lynn, J., Zhong, Z., et al. (2000). Dying with lung cancer or chronic obstructive pulmonary disease: Insights from SUPPORT. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Journal of the American Geriatric Society, 48(5 Suppl), S146153.

Cohen, L.M., Germain, M.J., Poppel, D.M., et al. (2003). Dying well after discontinuing the life-support treatment of dialysis. Archives of Internal Medicine, 160, 25132518.

Donovan, K.A., Greene, P.G., Shuster, J.L., Jr., et al. (2002). Treatment preferences in recurrent ovarian cancer. Gynecologic Oncology, 86, 100211.

Eisemann, M. & Richter, J. (1999). Relationships between various attitudes towards self-determination in health care with special reference to an advance directive. Journal of Medical Ethics, 25, 3741.

Emanuel, E.J., Fairclough, D.L., & Emanuel, L.L. (2002). Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA, 284, 24602468.

Filiberti, A., Ripamonti, C., Totis, A., et al. (2001). Characteristics of terminal cancer patients who committed suicide during a home palliative care program. Journal of Pain and Symptom Management, 22, 544553.

Friedman, B.T., Harwood, M.K, & Shields, M. (2002). Barriers and enablers to hospice referrals: An expert overview. Journal of Palliative Medicine, 5, 7384.

Ganzini, L., Goy, E.R, Miller, L.L., et al. (2003). Nurses' experiences with hospice patients who refuse food and fluids to hasten death. New England Journal of Medicine, 349, 359365.

Ganzini, L., Harvath, T.A., Jackson, A., et al. (2002a). Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide. New England Journal of Medicine, 347, 582588.

Ganzini, L., Silveira, M.J., & Johnston, W.S. (2002b). Predictors and correlates of interest in assisted suicide in the final month of life among ALS patients in Oregon and Washington. Journal of Pain and Symptom Management, 24, 312317.

Hamel, M.B., Lynn, J., Teno, J.M., et al. (2000). Age-related differences in care preferences, treatment decisions, and clinical outcomes of seriously ill hospitalized adults: Lessons from SUPPORT. Journal of the American Geriatric Society, 48(5 Suppl), S176182.

Happ, M.B., Capezuti, E., Strumpf, N.E., et al. (2002). Advance care planning and end-of-life care for hospitalized nursing home residents. Journal of the American Geriatric Society, 50, 829835.

Kelly, B., Burnett, P., Badger, S., et al. (2003a). Doctors and their patients: A context for understanding the wish to hasten death. Psychooncology, 12, 375384.

Larson, D.G. & Tobin, D.R. (2000). End-of-life conversations: Evolving practice and theory. JAMA, 284, 15731578.

Lee, M. & Ganzini, L. (1992). Depression in the elderly: Effect on patient attitudes toward life-sustaining therapy. Journal of the American Geriatric Society, 40, 983988.

Lee, M. & Ganzini, L. (1994). The effect of recovery from depression on preferences for life-sustaining therapy in older patients. Journal of Gerontology, 49, M15M21.

Levenson, J.W., McCarthy, E.P., Lynn, J., et al. (2000). The last six months of life for patients with congestive heart failure. Journal of the American Geriatric Society, 48(5 Suppl), S101109.

Lynn, J., Ely, E.W., Zhong, Z., et al. (2000). Living and dying with chronic obstructive pulmonary disease. Journal of the American Geriatric Society, 48(5 Suppl), S91100.

Menon, A.S., Campbell, D., Ruskin, P., et al. (2000). Depression, hopelessness, and the desire for life-saving treatments among elderly medically ill veterans. American Journal of Geriatric Psychiatry, 8, 333342.

Morita, T., Hirai, K., Akechi, T., et al. (2003). Similarity and difference among standard medical care, palliative sedation therapy, and euthanasia: A multidimensional scaling analysis on physicians' and the general population's opinions. Journal of Pain and Symptom Management, 25, 357362.

Nelson, C.J., Rosenfeld, B., Breitbart, W., et al. (2002). Spirituality, religion, and depression in the terminally ill. Psychosomatics, 43, 213220.

Neu, S. & Kjellstrand, C.M. (1986). Stopping long-term dialysis: An empirical study of withdrawal of life-supporting treatment. New England Journal of Medicine, 314, 1420.

Peruselli, C., Di Giulio, P., Toscani, F., et al. (1999). Home palliative care for terminal cancer patients: A survey on the final week of life. Palliative Medicine, 13, 233241.

Pfeifer, M.P., Mitchell, C.K., & Chamberlain, L. (2003). The value of disease severity in predicting patient readiness to address end-of-life issues. Archives of Internal Medicine, 163, 609612.

Puchalski, C.M., Zhong, Z., Jacobs, M.M., et al. (2000). Patients who want their family and physician to make resuscitation decisions for them: Observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. Journal of the American Geriatric Society, 48(5 Suppl), S84S90.

Rosenfeld, B., Breitbart, W., Galietta, M., et al. (2000a). The schedule of attitudes toward hastened death: Measuring desire for death in terminally ill cancer patients. Cancer, 88, 28682875.

Rosenfeld, B., Breitbart, W., Stein, K., et al. (1999). Measuring desire for death among patients with HIV/AIDS: The schedule of attitudes toward hastened death. American Journal of Psychiatry, 156, 94100.

Rosenfeld, K.E., Wenger, N., & Kagawa-Singer, M. (2000b). End-of-life decision making. Journal of General Internal Medicine, 15, 620625.

Seale, C.F. & Addington-Hall, J. (1995). Euthanasia: The role of good care. Social Science & Medicine, 40, 581587.

Seale, C., Addington-Hall, J., & McCarthy, M. (1997). Awareness of dying: Prevalence, causes and consequences. Social Science & Medicine, 45, 477484.

Somogyi-Zalud, E., Zhong, Z., Lynn, J., et al. (2000). Elderly persons' last six months of life: Findings from the Hospitalized Elderly Longitudinal Project. Journal of the American Geriatric Society, 48(5 Suppl), S131139.

Tsevat, J., Dawson, N.V., Wu, A.W., et al. (1998). Health values of hospitalized patients 80 years or older. HELP Investigators. Hospitalized Elderly Longitudinal Project. JAMA, 279, 371375.

Walker, R.M., Schonwetter, R.S., Kramer, D.R., et al. (1995). Living wills and resuscitation preferences in an elderly population. Archives of Internal Medicine, 155, 171175.

Wenger, N.S., Lynn, J., Oye, R.K., et al. (2000). Withholding versus withdrawing life-sustaining treatment: Patient factors and documentation associated with dialysis decisions. Journal of the American Geriatric Society, 48(5 Suppl), S7583.

Wineberg, H. & Werth, J.L., Jr. (2003). Physician-assisted suicide in Oregon: What are the key factors?Death Studies, 27, 501518.

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Palliative & Supportive Care
  • ISSN: 1478-9515
  • EISSN: 1478-9523
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