The quality of medical care at the end-of-life in the USA: existing barriers and examples of process and outcome measures

Palliat Med. 2004 Apr;18(3):202-16. doi: 10.1191/0269216304pm880oa.


Context: Cancer is a leading cause of morbidity and mortality in the USA and despite many recent advances in detection and treatment, over half a million cancer patients in this country will die from their disease each year.

Objective: Using cancer as a prototype, we provide a conceptual framework to identify and review barriers to optimal end-of-life care and propose examples of linked process and outcome measures that could be used to evaluate whether standards of optimal end-of-life care are being achieved.

Methods: We propose a conceptual model of end-of-life care and use this model to review the published literature to identify the key goals of optimal end-of-life care and summarize existing barriers to optimal end-of-life care. We then provide examples of process and outcome measures linked to the goals of optimal end-of-life care and domains within the conceptual framework.

Results: Within all components of care at the end-of-life--societal attitudes, health care system(s), providers, and patients and their families--there are significant barriers to the quality of care. Some of the most critical barriers to optimal care at the end-of-life in the USA are limited availability, and coverage of, co-ordinated service delivery; poor provider communication and diagnostic skills; limited opportunities for training in palliative care; patient fears and attitudes towards the sick role, and a lack of, or inadequate health insurance. Proposed patient, provider, and system level measures of the quality of care were guided by goals of optimal end-of-life care, and focus on communication about prognosis and risks and benefits of treatment, development of clear and informed treatment goals, delivery of services consistent with treatment goals, and promotion of quality of life.

Conclusions: At present, there are substantial societal, health care system, provider, and patient barriers to obtaining optimal cancer care at the end-of-life. Ongoing discussions about appropriate measures of the quality of end-of-life care are gaining momentum, however. The proposed process and outcome measures for assessing optimal end-of-life care use cancer as a prototype, but are broadly applicable to other patient populations with life-threatening disease.

Publication types

  • Research Support, U.S. Gov't, Non-P.H.S.
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Advance Directives
  • Attitude to Death
  • Goals
  • Humans
  • Medicare
  • Neoplasms / therapy*
  • Outcome and Process Assessment, Health Care / standards*
  • Public Opinion
  • Quality of Health Care
  • Terminal Care / standards*
  • United States