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Outcomes/Effectiveness Research

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Substantial barriers prevent cancer patients from obtaining optimal care at the end of life

Despite many recent advances in cancer detection and treatment, more than half a million U.S. cancer patients die from their disease each year. Unfortunately, substantial societal, health care system, provider, and patient barriers prevent these individuals from obtaining optimal end-of-life care, according to a literature review supported in part by the Agency for Healthcare Research and Quality (HS08395). K. Robin Yabroff, Ph.D., M.B.A., Jeanne S. Mandelblatt, M.D., M.P.H., and Jane Ingham, of the Lombardi Cancer Center at Georgetown University identified and reviewed the barriers to optimal end-of-life care for cancer patients.

The researchers found that societal attitudes towards cancer and death and the medicalization of end-of-life care impede optimal end-of-life care for cancer patients. System barriers range from cost-containment efforts and fragmented coverage of end-of-life care by insurers to increased reliance on informal caregiving by family and friends, regulatory restrictions on pain management, and lack of coordinated end-of-life services. Provider barriers include poor provider-patient communication, delayed referrals to specialists or hospice care, limited ability to recognize and treat common symptoms of advanced cancer, and lack of training in palliative care.

Key patient-level barriers include the patients' inability to confront death, reluctance to accept the sick role, fear of side effects or becoming addicted to pain medications, and the lack of health insurance or inadequate coverage. The researchers stress how important it is for physicians to communicate with patients and their families about prognosis and the risks and benefits of treatment, to develop clear and informed treatment goals that are consistent with patient and family goals of care, and to deliver services that are consistent with treatment goals and quality of life.

See "The quality of medical care at the end-of-life in the USA: Existing barriers and examples of process and outcome measures," by Dr. Yabroff, Ph.D., M.B.A., Dr. Mandelblatt, and Jane Ingham, M.B.B.S., in the April 2004 Palliative Medicine 18, pp. 202-216.

Editor's Note: Another AHRQ-supported study on a related topic found that mailing health care proxy and living will forms and literature to patients before an appointment at which their physicians received a reminder about advance directives yielded a small but significant improvement in completion of these documents.

See Heiman, H., Bates, D.W., Fairchild, D., and others (2004, September). "Improving completion of advance directives in the primary care setting: A randomized controlled trial." (AHRQ grant HS11046). American Journal of Medicine 117, pp. 318-324.

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