NCCN Palliative Care Guidelines 2007: integrating end-of-life care
Palliative care and its definition have continued to evolve during the past 20 years. In 1990, the World Health Organization established one of the first widely used definitions: “the active, total care of patients whose disease is not responsive to curative treatment.”
More recently, the American Academy of Hospice and Palliative Medicine offered a more expansive definition, stating that palliative care can be delivered “from diagnosis to death” because palliative care can occur “concurrently with life prolonging care or as the main focus of care.”
While older definitions defined palliative care as care of the dying, current definitions, including that of the National Comprehensive Cancer Network, not only allow for but encourage the integration of palliative care with various cancer-directed treatments even if the goal of such therapies is life-prolongation.
The NCCN definition states: “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 disease or the need for other therapies.”
Care throughout disease course
The provision of palliative care throughout the disease course (from diagnosis through treatments and at end of life) benefits the cancer patient and the family by offering a support system along the disease trajectory.
Palliative care involvement also supports the efforts of the patient’s oncology team. Regardless of prognosis, palliative care aims to address physical, social, psychological and spiritual aspects of having a life-threatening or life-limiting illness and to control symptoms and eliminate suffering.
The 2007 NCCN Palliative Care Guidelines (available at www.nccn.org) offer a framework for integrating palliative care into current oncology practice. By providing palliative care to patients when they initially present with symptoms and alongside disease-modifying therapies, patients and families are offered a clear understanding of the natural history of their disease and its prognosis. Essentially, the early integration of palliative care provides patients with comprehensive cancer care.
The NCCN Palliative Care Guidelines address procedures for palliative care screening and assessment, palliative care interventions, reassessment and after-death care. The guidelines currently focus on cancer patients with a life expectancy of ≤12 months (see table 1 for potential indicators of life expectancy <12 months). To further guide the use of specific interventions, life expectancy is broken down into years to months, months to weeks, and weeks to days.
Screen at regular intervals
The NCCN recommends that all cancer patients be screened for palliative care services at the initial visit and then again at regular intervals. Certain clinical scenarios often suggest palliative care is indicated (see table 2). Patients with various characteristics, including limited treatment options, high distress scores and severe comorbid conditions, and certain social circumstances, such as inadequate social support and family discord, may benefit from early consultation with palliative care. The inclusion of palliative care experts can support the patient’s oncology team in managing intractable symptoms or complex psychosocial problems.
Integral elements of a palliative care assessment include discussion of the benefits and risks of anticancer therapy, personal goals and expectations, educational and information needs, cultural factors affecting care and a thorough evaluation of symptoms, including presence of psychosocial or spiritual distress.
A discussion of the benefit and risk of anticancer therapy is guided by the patient’s life expectancy, with patients who have only months to weeks or weeks to days to live receiving added guidance about the anticipated course of their disease and the dying process itself. Palliative efforts are intensified for the dying patient with focus shifting to symptom control and comfort.
Social support and resource problems may lead cancer patients to experience psychosocial distress, as may underlying psychiatric issues or existential/spiritual crises. The NCCN Palliative Care Guidelines offer interventions such as ensuring a safe home environment, sufficient financial resources, and support and education to caregivers and family members.
Advance-care planning is central to palliative care. NCCN recommends providing patients and families with information about advance directives and encouraging DNR discussion. Health care proxies should be designated and medical power of attorneys obtained whenever possible. Questions about organ donation and/or autopsy may be broached. Conflicts between patient and families should be resolved, with the assistance of an ethics committee if necessary. Involvement of the palliative care team can facilitate these occasionally difficult conversations.
Ultimately, palliative care aims to provide cancer patients with a “good” death. A good death is “free from avoidable distress and suffering for patients, families and caregivers, [is] in general accord with patient’s and family’s wishes, [and is] reasonably consistent with clinical, cultural, and ethical standards.”
After-death care for family and caregivers, including immediate after-death care (ie, providing family time with the body, completion of forms, informing other providers of patient’s death) and bereavement support, such as offering condolences in the form of a card, call or letter and referral to bereavement services is also indicated. The NCCN 2007 Palliative Care Guidelines offer a set of standards (see table 3).
Palliative care focuses on alleviating any distressing symptom; however, the NCCN guidelines outline specific management strategies for pain, dyspnea, anorexia/cachexia, nausea/vomiting, constipation, malignant bowel obstruction, fatigue/weakness/asthenia, insomnia, sedation and delirium. Each of these symptoms, highlighted by cases observed at Roswell Park Cancer Institute, a comprehensive cancer center and participating member of the NCCN, will be addressed in this column in upcoming issues.
Margaret M. Eberl, MD, MPH, is a Pain Palliative Care Physician at Roswell Park Cancer Institute.
For more information:
- American Academy of Hospice and Palliative Care (AAHPM) Definition of palliative care. Accessed at www.AAHPM.org.
- National Comprehensive Cancer Network Palliative Care Guidelines, 2007. Accessed at www.nccn.org.
- World Health Organization (WHO) Expert Committee. Cancer pain relief and palliative care. Geneva, WHO, 1990.