Palliative Care and Pain Management at the End of Life ___________________________________________
EVOLVING DEFINITION OF PALLIATIVE CARE
Year
Source and Definition
Comments
1990 World Health Organization (WHO): “…The active total care of patients whose disease is not responsive to curative treatment.”
Does not apply exclusively to palliative care
1993
The Oxford Textbook of Palliative Medicine : “The study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is the quality of life.”
Lacks essential aspects, such as support provided to families, as well as specificity about timing First definition to reflect integration of palliative care earlier into the disease continuum
2004 National Consensus Project: “The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies…” Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing
opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.
2007 WHO (revision): “An approach that improves the quality of life of patients and their families facing the problem associated with life- threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” 2009 American Society of Clinical Oncology: “Palliative cancer care is the integration into cancer care of therapies to address the multiple issues that cause suffering for patients and their families and have an impact on the quality of their lives. Palliative cancer care aims to give patients and their families the capacity to realize their full potential, when their cancer is curable as well as when the end of life is near.” 2013 National Consensus Project: “Palliative care means patient and family- centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.”
Improvement over original WHO definition, but expansion of palliative care throughout the continuum of care not explicit Defines palliative care for patients with cancer, but definition can be applied to palliative care in all settings
Characterization of palliative care in the United States, as defined by the U.S. Department of Health and Human Services and the National Quality Forum
Source: [4; 5; 6; 7; 8]
Table 1
Preferences for Outcomes and Risks of Treatment (SUPPORT) [12; 13]. The results of this landmark study indicated that in-hospital deaths were characterized by prolonged suffering, uncontrolled pain, and caregiver hardship. In response, the Institute of Medicine (IOM) commissioned a report on the quality of care at the end of life, and the authors of this report, Approaching Death: Improving Care at the End of Life , noted that too many patients “suffer needlessly” at the end of life and emphasized the need for better training of healthcare profes- sionals and reform of outdated laws that inhibited the use of pain-relieving drugs [2]. A subsequent IOM report pointed out the need for enhanced pediatric palliative care [14]. Several initiatives have been developed to address the deficiencies in the quality of palliative care; to optimize the use of hospice; to help the lay public better understand the meaning of palliative care and hospice and their benefits; and to enhance the knowl- edge, skills, and attitudes of healthcare professionals. Five orga- nizations—the American Academy of Hospice and Palliative Medicine (AAHPM), the Center to Advance Palliative Care
(CAPC), the Hospice and Palliative Nurses Association, the Last Acts Partnership, and the National Hospice and Palliative Care Organization (NHPCO)—joined forces in the National Consensus Project for Quality Palliative Care Consortium and published clinical practice guidelines to help reduce the variation in palliative care programs and enhance continuity of care across healthcare settings [6]. The National Quality Forum (NQF) built on these guidelines when it proposed a national framework for palliative and hospice care [15]. Other efforts included the first core curriculum in hospice and palliative care, created by the AAHPM; the development of the Education in Palliative and End-of-Life Care (EPEC) Project (https://www.bioethics.northwestern.edu/programs/ epec); and the subsequent development of the EPEC-Oncology (EPEC-O) curriculum and the End-of-Life Nursing Education Consortium Project (https://www.aacnnursing.org/ELNEC).
4
MDCA1525
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