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National Guidelines for Palliative Care: A Roadmap for Oncology Nurses

National Guidelines for Palliative Care: A Roadmap for Oncology Nurses

ABSTRACT: ABSTRACT: Patients with cancer have signifi cant needs for palliative care, including pain and symptom management and psychosocial and spiritual support. The experience of cancer has an impact on family caregivers as well, and palliative care needs exist from diagnosis through survivorship and end-of-life care. Oncology nurses have opportunities to integrate palliative care into disease-focused care. Clinical practice guidelines developed by the National Consensus Project for Quality Palliative Care and preferred practices defined by the National Quality Forum serve as a framework to guide nurses in this area. These national guidelines can serve as a roadmap to develop clinical services that will serve patients and families.

In the next decade, we will witness growing numbers of cancer survivors with ongoing needs for support, newly diagnosed patients whose cancer experience begins with uncontrolled symptoms and extreme psychological effects, and patients with recurrent or late-stage disease in need of high-quality care at the end of life. The concept of palliative care should be integrated throughout cancer care, with nurses primarily responsible for its delivery.

ONCOLOGY Nurse Edition has focused on the topic of palliative care at a pivotal time in the history of cancer care. This article is the fi rst of a four-part series on palliative care. It presents a general framework for quality improvement and is intended to present a global view of palliative care within oncology practice. Two national initiatives of major importance will be described: the National Consensus Project for Quality Palliative Care (NCP) and the National Quality Forum (NQF) framework for palliative care.[1,2]

The three articles that will follow in this series will focus on specific priority topics: the newly diagnosed patient and palliative care, survivorship and palliative care, and fi nally, care at the end of life.

THE NATIONAL CONSENSUS PROJECT FOR QUALITY PALLIATIVE CARE

The NCP published the Clinical Practice Guidelines for Quality Palliative Care in 2004.[1,3] The NCP was initiated in 2001 and is a collaboration of four key national palliative care organizations: the American Academy of Hospice and Palliative Medicine (AAHPM), the Center to Advance Palliative Care (CAPC), the Hospice and Palliative Nurses Association (HPNA), and the National Hospice and Palliative Care Organization (NHPCO). These organizations worked to achieve consensus on elements defining quality palliative care.

The NCP goal was to promote growth and development of quality practices in clinical settings. NCP guidelines were created through a rigorous 3-year process consistent with other clinical practice guide-lines. Development included a comprehensive reviewof the research literature and extensive consensus by the leaders of the palliative care organizations. The consensus document was then reviewed by external peers and various organizations. These guidelines were endorsed as a timely and signifi cant advance for the field.

The NCP mission was "to create a set of voluntary clinical practice guidelines to guide the growth and expansion of palliative care in the United States."[1] The NCP guidelines were initiated as a voluntary challenge to organizations.

But given the importance of the fi eld, many have speculated that this effort will lead to mandatory requirements for accreditation or licensure in the future. This is especially true in oncology as, even with treatment advances, more than 560,000 people will die from cancer this year and principles of palliative care need to be initiated from the moment of diagnosis.[4,5]

NCP guidelines address needs for quality care for patients in hospice and palliative care. The guidelines are equally applicable to inpatient and outpatient oncology settings, to small and large oncology programs, and to rural and major urban cancer centers. Hospice in America has been a welcome advance in care, but unfortunately it is often limited to the last days or weeks of life. Palliative care aims to improve quality care through reduction of symptoms; improved communication between patients, families, and health professionals; and enhancing continuity of care across settings.

Reports by the Institute of Medicine and others have called for systemwide change to insure that palliative care begins at the time of diagnosis in serious illness.[6–16] Palliative care should be seamlessly integrated within disease-focused care such as during radiation therapy, chemotherapy, in clinical trials, and also in survivorship care.

The NCP's Eight Broad Domains The NCP framework includes eight broad domains, and within each domain there are specific recommendations. The NCP guidelines address the structure and process of care important in building systems of quality palliative care. The other NCP domains address quality-of-life (QoL) concerns in the physical, psychological, social, and spiritual aspects of care. The NCP guidelines also address cultural considerations, a topic of increasing importance in our diverse society. The final domains include imminent death and ethical/legal aspects of care. NCP guidelines were developed for palliative care programs across all settings: hospital-based, ambulatory, and home care.

NATIONAL QUALITY FORUM EXTENDS NCP GUIDELINES

The significance of national guidelines for palliative care was evidenced by the response by the NQF. The NQF framework was built directly on the NCP guidelines, and was a major achievement in the advancement of palliative care.[2] The NQF extended the guidelines by developing a set of preferred practices for each of the eight domains. These 38 best practices are evidence- based and endorsed through expert opinion for a comprehensive quality measurement and reporting system across all settings to improve palliative care. The NQF and the NCP defi nition is that "palliative care is both a philosophy of care and an organized, highly structured system for delivering care."[1,2] The goal of palliative care is to prevent and relieve suffering and to support the best possible QoL 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 QoL for patients and family members, helping with decision making, and providing opportunities for personal growth.[1,2]

 

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