Oncology Nursing Society and Association of Oncology Social Work Joint Position on Palliative and End-of-Life Care

Palliative and end-of-life care is integral to oncology and indicative of the importance of alleviating physical, psychological, social, and spiritual pain and suffering whether or not cure is an option. People with cancer and their family members should receive care that reflects the principles of excellent palliative care across various settings (home, hospice, hospital, or residential facility) from the time of diagnosis through the end of life (National Consensus Project for Quality Palliative Care [NCPQPC, 2009; World Health Organization [WHO], 2007; 2010). Such care should ensure that patients and families are not abandoned at the end of life. A proactive and integrated approach to palliative care will improve quality of life across the care continuum.

It Is the Position of ONS and AOSW That

Patient and Family Care

  • Palliative care, as appropriate, should begin at the time of diagnosis and continue through bereavement (WHO, 2007).
  • The family is the unit of care, with the patient viewed as part of the family and family defined by the patient.
  • Palliative care addresses the physical, psychological, social, and spiritual aspects of the patient and family experience and attends to values, preferences, goals, and needs of the patient and family (Berzoff & Silverman, 2004; NCPQPC, 2009).
  • Physical, psychological, social, and spiritual elements are comprehensively assessed, and symptoms are measured, managed, and documented using available standardized scales.
  • Palliative and end-of-life care reflects culturally appropriate approaches to interactions and interventions and includes professional interpreter services and culturally sensitive materials provided in the patient’s and family’s preferred language.
  • A comprehensive care plan is implemented and adjusted according to the patient’s and family’s goals of care through all phases of the illness experience, including loss, grief, and bereavement.
  • Effective communication between the patient, family, and care team is facilitated and prioritized (Institute of Medicine, 2008). Family conferences that include the patient (when possible), family members, caregivers, and relevant members of the interdisciplinary care team are encouraged to enhance
    communication and empower families.
  • The patients and family are provided tools, resources, and support to make informed decisions regarding the benefits and burdens of potential interventions as well as accompanying financial costs.
  • Patients and families are provided resources and information on hospice care when patients are likely to die within a year.
  • Care is provided by an interdisciplinary team that includes at least physicians, nurses, social workers, and spiritual care professionals and ideally also includes pharmacists, nursing aides, bioethicists, volunteers, and allied personnel who are skilled, credentialed, or certified in the essentials of palliative care.
  • Healthcare professionals recognize the complexity of the patient and family experience that builds on a preexisting family history, requires ongoing role adaptation, demands adjustment to altered goals of care, and includes difficult decision-making. Healthcare providers advocate and support for patients’ and families’ participation in care and decision making, in accordance with the patient’s goals of care and the needs of families and caregivers (National Association of Social Workers, 2004; NCPQPC, 2009).
  • Care is provided using evidence-based practice that reflects quality research in palliative care.

Integrated Care Systems

  • Healthcare systems adopt the Physician Orders for Life Sustaining Treatment paradigm (Oregon Health and Science University, 2007) to ensure respect for “do not resuscitate orders” when terminally ill patients change sites of care.
  • Acute, critical care, outpatient, emergency department, home health, and long-term care services incorporate palliative care principles and provide timely and appropriate care to patients and families 24 hours a day, seven days a week.
  • Communication about patients (especially when transitioning between healthcare facilities or providers) include (a) patients’ values, goals of care, preferences, and needs; (b) physical and psychosocial issues; (c) current treatment interventions and requirements; (d) potential complications;
    and (e) expected outcomes across sites of care.

Public Advocacy

  • Public and professional education regarding the preparation of advanced healthcare directives and the right of each individual to excellent palliative care is increased.
  • Skilled advocacy in collaboration with regional and national policymakers, consumer groups, and licensing and regulatory agencies focuses on equal and affordable access to end-of-life care and the establishment of prescribing laws that enable adequate relief of pain.

Approved by the ONS Board of Directors, 7/07; 3/10.

References

Berzoff, J., & Silverman, P.R. (Eds.). (2004). Living with dying: A handbook for end-of-life healthcare practitioners. New York, NY: Columbia University Press.

Institute of Medicine. (2008). Cancer care for the whole patient: Meeting psychosocial health needs. Washington, DC: National Academies Press.

National Association of Social Workers. (2004). NASW standards for palliative and end of life care. Washington, DC: Author.

National Consensus Project for Quality Palliative Care. (2009). Clinical practice guidelines for quality palliative care (2nd ed.). Retrieved from http://www.nationalconsensusproject.org

Oregon Health and Science University. (2007). History of POLST paradigm initiative. Retrieved from http://www.ohsu.edu/polst/developing/history.htm

World Health Organization. (2007). Cancer control: Knowledge into action. WHO guide for effective programmes: Palliative care. Geneva, Switzerland: WHO Press.

World Health Organization. (2010). WHO definition of palliative care. Retrieved from http://www.who.int/cancer/palliative/definition/en/
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