Elsevier

Journal of Professional Nursing

Volume 25, Issue 6, November–December 2009, Pages 363-368
Journal of Professional Nursing

Original Articles
Policy Issues in End-of-Life Care

https://doi.org/10.1016/j.profnurs.2009.08.005Get rights and content

The purpose of this policy brief is to bring attention to the urgent systems-level matters that impede progress in improving end-of-life care in the United States. Despite advances in care of the dying over the last 20 years, many recalcitrant system-level barriers prevent high-quality end-of-life care that is consistent with clinical and ethical standards and reasonably adheres to patient and family wishes for care and compassion. A major barrier is the orientation of health care toward rescue medicine despite the fact that most deaths today result from long-standing chronic disease. Recommendations for policy changes are suggested, and nursing's role in advocating for policy change is explored.

Section snippets

Background

Since the landmark 1997 Institute of Medicine report about dying in America (Field & Cassel, 1997) that decried the overuse of life-extending treatments, end-of-life care throughout the United States has gradually improved. Palliative care has become a medical and nursing specialty. More hospitals have palliative care specialists (Morrison, Maroney-Galin, Kralovec, & Meier, 2005) and pain management services (Gordon et al., 2005, Sherman et al., 2004). Opioid use has increased dramatically (

Barriers to Delivering Good Care at the End-of-Life

A significant issue impeding improvement in care for the dying is the mismatch between the dominant culture of recovery-focused medicine and the needs of an aging population. “Rescue medicine” is the default mode in American hospitals, although 7 out of 10 deaths today result from life-limiting chronic illnesses that follow a slow and often predictable decline. The misalignment of aggressive-focused acute-care hospitals serving an aging and chronically ill population sometimes results in

Policy Recommendations

End-of-life care has been a flash-point in the current health care reform debate. Although improving care at the end-of-life ranks high for reform, issues can quickly devolve into confusion about the incentives for improving care. Groups such as the elderly and the disabled can misunderstand that effective planning for life's end, intended to enhance respect for patient and family wishes, improve palliation, and reduce unwanted and expensive aggressive treatments, can appear to be otherwise

Implications for Nurses

By training and passion, nurses promote the health and well-being of patients, families, communities, and society. Nurses also have a pivotal role in the formation and evaluation of health policy. Along with patients and families, nurses experience firsthand the disparities in the delivery of end-of-life care and how health policies promote or reduce inequities. As well-educated patient advocates, nurses are highly qualified to communicate patient experiences to state and federal legislators

References (44)

  • BottrellM.M. et al.

    Transferring dying nursing home residents to the hospital: DON perspectives on the nurse's role in transfer decisions

    Geriatric Nursing

    (2001)
  • MillerS.C. et al.

    Hospice and palliative care in nursing homes

    Clinics in Geriatric Medicine

    (2004)
  • American Associate of Colleges of Nursing [AACN]

    End-of-Life Nursing Education Consortium (ELNEC) fact sheet

  • American Hospital Association

    Trends affecting hospitals and health systems

  • AndersonK.O. et al.

    Minority cancer patients and their providers: Pain management attitudes and practice

    Cancer

    (2000)
  • AngusD.C. et al.

    Use of intensive care at the end of life in the United States: An epidemiologic study

    Critical Care Medicine

    (2004)
  • BernalE.W. et al.

    End-of-life decisions: Family views on advance directives

    American Journal of Hospice and Palliative Medicine

    (2007)
  • BrockD.B. et al.

    Demography and epidemiology of dying in the U.S. with emphasis on deaths of older persons

    Hospice Journal

    (1998)
  • Center for Practical Bioethics
  • ChenP.W.

    Final exam. A surgeon's reflections on mortality

    (2008)
  • CovinskyK.E. et al.

    Is economic hardship on the families of the seriously ill associated with decedent and surrogate care preferences?

    Archives of Internal Medicine

    (1996)
  • DowdyM.D. et al.

    A study of proactive ethics consultation for critically and terminally ill patients with extended lengths of stay

    Critical Care Medicine

    (1998)
  • EmanuelE.J. et al.

    Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers

    Annals of Internal Medicine

    (2000)
  • EmanuelL.L. et al.

    Gaps in end-of-life care

    Archives of Family Medicine

    (2000)
  • EzenwaM.O. et al.

    Racial and ethnic disparities in pain management in the United States

    Journal of Nursing Scholarship

    (2006)
  • FieldM.J. et al.

    Approaching death: Improving care at the end of life

    (1997)
  • FisherE.S. et al.

    The implications of regional variations in Medicare spending. Part 1: The content, quality, and accessibility of care.

    Annals of Internal Medicine

    (2003)
  • FisherE.S. et al.

    The implications of regional variations in Medicare spending. Part 2: Health outcomes and satisfaction with care.

    Annals of Internal Medicine

    (2003)
  • ForbesS.

    This is heaven's waiting room: End of life in one nursing home

    Journal of Gerontological Nursing

    (2001)
  • Forbes-ThompsonS. et al.

    End of life in nursing homes: Connections between structure, process, and outcomes

    Journal of Palliative Medicine

    (2005)
  • GilmerT. et al.

    The costs of nonbeneficial treatment in the intensive care setting

    Health Affairs

    (2005)
  • GordonD.B. et al.

    American pain society recommendations for improving the quality of acute and cancer pain management. American pain society quality of care task force.

    Archives of Internal Medicine

    (2005)
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    • The expression of ‘policy’ in palliative care: A critical review

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      Various human-resource related shortfalls were also expressed – like deficits in palliative care education provision [79], an insufficiently skilled workforce [86] and knowledge and skills deficits [57]. Building on these functional issues, deeper “systems-level” antagonisms [90] were also suggested, expressed variously as: the existence of a problematic “dominant biomedical paradigm” [80]; a “bias toward curative care” [36]; health service cultures where death is still a taboo [54]; hostile professional attitudes toward older people [80]; “legal and regulatory constraints” [80]; and “knowledge deficits and misunderstandings about PC” [79]. These narratives tended to be resolved by seeing palliative care as an “urgent policy and practice imperative” [55] and more policy formulation [80]; increased funding [15]; more trained palliative care professionals [91]; and expanded palliative care [83].

    • Implementation of national palliative care guidelines in Swedish acute care hospitals: A qualitative content analysis of stakeholders’ perceptions

      2017, Health Policy
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      Earlier studies have identified challenges for the provision of palliative care in hospitals [21]. Many view the meanings of the concepts ‘palliative care’ and ‘end of life care’ as unclear [21–23], and the staff have difficulty in identifying patients in need of palliative care [21,24–27]. Lack of adequate training and competency in the field are also described as barriers to good palliative care [24,26,28].

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    Portions of this article were originally delivered in the Helen Nahm Research Lecture at the University of California San Francisco School of Nursing on April 16, 2007.

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