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]

NCP DOMAINS: AN ONCOLOGY NURSING ROADMAP

Following is a summary of each domain of the NCP guidelines with the recommendations for improving the quality of palliative care. Examples of some of the preferred practices from the NQF framework are also included to indicate where oncology nurse leaders can direct efforts at change.

A complete version of the NCP guidelines can be found on the NCP website, and a complete list of the NQF preferred practices can be found on that organization's website. (See Table 1.)

DOMAIN 1: STRUCTURE AND PROCESS OF CARE

Oncology nurses know that to improve care for patients in a consistent and reliable way, enduring structures must be developed and processes of care must be created. This has been demonstrated in other areas of oncology such as creation of structures and processes of chemotherapy administration, infection control precautions, and survivorship care planning. The key recommendations within Domain 1 include the following:
• Conduct comprehensive interdisciplinary assessment of patient and family.
• Address the identifi ed and expressed needs of patient and family.
• Interdisciplinary team is consistent with the plan of care.
• Implement education and training.
• Recognize emotional impact of work.
• Team develops relationship with hospices.
• Physical environment meets needs of both patient and family.

Examples of NQF Preferred Practices for Domain 1

Preferred Practice #2: Provide access to palliative and hospice care that is responsive to the patient and family 24 hours a day, 7 days a week.

Preferred Practice #3: Provide continuing education to all health-care professionals on the domains of palliative care and hospice care.

Preferred Practice #8: Health-care professionals should present hospice as an option to all patients and families when death within a year would not be surprising, and reintroduce the hospice option as the patient's health declines.

Implications for Oncology Nurses

There are many opportunities to implement structures and processes that can integrate palliative care within disease-focused care. The aforementioned preferred practices are valuable contributions to oncology care.

Strengthening relationships with hospice and providing education to staff on topics such as symptom management, bereavement, and cultural issues at the end of life can have a signifi cant impact on the delivery of care to patients.

DOMAIN 2: PHYSICAL ASPECTS OF CARE

Quality care in cancer is not possible without attention to physical concerns. The key recommendations within Domain 2 include the following: • Manage pain, other symptoms, and treatment side effects using best practices. • Team documents and communicates treatment alternatives, permitting patient/family to make informed choices. • Educate and support the family to provide safe/appropriate comfort measures to patient.

Examples of NQF Preferred Practices for Domain 2

Preferred Practice #12: Measure and document pain, dyspnea, constipation, and other symptoms using available standardized scales. Preferred Practice #13: Assess and manage symptoms and side effects in a timely, safe, and effective manner to a level that is acceptable both to the patient and to the patient's family members.

Implications for Oncology Nurses

Over the past decade, oncology nurses have made substantial contributions to improving pain management. The impact of improved pain relief on QoL has been well documented. Often, symptoms are not well addressed, yet palliative care programs have demonstrated that routine procedures for treatment of physical and psychological symptoms can greatly improve QoL.

DOMAIN 3: PSYCHOLOGICAL AND PSYCHIATRIC ASPECTS OF CARE

Attention to psychological aspects of cancer is as essential as the priority of physical care. These symptoms often are not assessed or aggressively treated, despite the prevalence of depression, anxiety, and other symptoms. Key Domain 3 recommendations include:
• Assess and manage psychological/psychiatric issues.
• Team employs pharmacologic, nonpharmacologic, and complementary therapies as appropriate.
• Grief and bereavement program is available to patients and families.

Examples of NQF Preferred Practices for Domain 3

Preferred Practice #14: Measure and document anxiety, depression, delirium, behavioral disturbances, and other common psychological symptoms using available standardized scales.

Preferred Practice #15: Manage anxiety, depression, delirium, behavioral disturbances, and other common psychological symptoms in a timely, safe, and effective manner to a level acceptable to the patient and family.

Preferred Practice #17: Develop and offer a grief and bereavement care plan to provide services to patients and families prior to and for at least 13 months after the death of the patient.

Implications for Oncology Nurses

There is much to be done to improve the psychological aspects of palliative care in oncology. Preferred practice #17 can be a challenge for oncology settings given the high mortality in this clinical specialty. While hospice programs have modeled the provision of bereavement services, most other settings do not routinely provide bereavement support. Oncology nurses can develop collaborative relationships with hospices and community agencies to insure that bereavement services are available.

DOMAIN 4: SOCIAL ASPECTS OF CARE

Oncology nurses have long recognized that quality care encompasses the family, not only the patient diagnosed with cancer. Needs for family support intensify as the disease progresses. The key recommendations within Domain 4 include the following:
• Conduct interdisciplinary social assessment.
• Develop care plan.
• Make referrals to appropriate services.

Examples of NQF Preferred Practices for Domain 4

Preferred Practice #18: Conduct regular patient and family care conferences with physicians and other appropriate members of the interdisciplinary team to provide information, discuss goals of care, disease prognosis, advanced care planning, and to offer support.

Preferred Practice #19: Develop and implement a comprehensive social care plan that addresses the social, practical, and legal needs of the patient and caregivers, including but not limited to relationships, communication, existing social and cultural networks, decision making, work and school settings, finances, sexuality/intimacy, caregiver availability/stress, and access to medicines and equipment.

Implications for Oncology Nurses

This domain is indicative of the need for interdisciplinary collaboration. Implementing quality improvement strategies for many aspects of palliative care in oncology can be facilitated by partnership with social workers.

Preferred practice #18 regarding family conferences is often an area of needed improvement. Open communication with family members is particularly important in advanced disease when decisions about treatment discontinuation or hospice often occur. Implementing routine family conferencing can be key to promoting the best care.

DOMAIN 5: SPIRITUAL, RELIGIOUS, AND EXISTENTIAL ASPECTS OF CARE

Oncology nurses have long advocated for attention to spiritual care needs. Many of the advances in spiritual assessment and in addressing diverse religious preferences have been pioneered in oncology. The key recommendations within Domain 5 include the following:
• Assess and address spiritual concerns.
• Recognize and respect religious beliefs-provide religious support.
• Make connections with community and spiritual/ religious groups or individuals as desired by patient/family.

Examples of NQF Preferred Practices for Domain 5

Preferred Practice #20: Develop and document a plan based on assessment of religious, spiritual, and existential concerns using a structured instrument and integrate the information obtained from the assessment into the palliative care plan.

Preferred Practice #23: Specialized palliative and hospice spiritual care professionals should build partnerships with community clergy, and provide education and counseling related to end-of-life care.

Implications for Oncology Nurses

In much the same way that structured assessment of pain or symptoms facilitates consistent care, this domain and its referred practices emphasizes the importance of routine practice related to spirituality. Many clinical settings have adopted standard spiritual assessments such as use of the FICA tool.^[17] Oncology nurses can be instrumental in promoting collaboration between chaplaincy and community clergy.

DOMAIN 6: CULTURAL ASPECTS OF CARE Oncology nurses have embraced the challenge to adapt cancer care to accommodate diverse cultures. Culturally based values, beliefs, traditions, and rituals impact greatly on QoL and take on added signifi cance in serious illness. The key recommendations within Domain 6 include the following:
• Assess and attempt to meet the culture-specific needs of patients and families.
• Respect and accommodate range of language, dietary, and ritual practices of patients and families.
• Team has access to/uses translation resources.
• Recruitment and hiring practices refl ect cultural diversity of community.

Example of NQF Preferred Practices for Domain 6

Preferred Practice #24: Incorporate cultural assessment as a component of comprehensive palliative and hospice care assessment, including but not limited to locus of decision making; preferences regarding disclosure of information, truth telling, and decision making; dietary preferences; language; family communication; desire for support measures such as palliative therapies and complementary and alternative medicine; perspectives on death, suffering, grieving, and funeral/burial rituals.

Implications for Oncology Nurses

Respecting culturally based values and practices begins with assessment but must include quality improvement efforts to change practice. Cancer patients facing the end of life may have heightened needs for affi liation with cultural practices. Many ethical dilemmas stem from a lack of attention to this domain, such as confl icts in truth telling or decision making. Oncology professionals often need continuing education to enhance their own understanding in this domain.

DOMAIN 7: THE IMMINENTLY DYING PATIENT

Oncology nurses have often seen instances where the final days or hours of a patient's life were not peaceful and quality care unfortunately was not achieved. The NCP guidelines and NQF framework have recognized this area of need and thus designed the seventh domain to address the imminently dying. Key recommendations within Domain 7 include: • Recognize and communicate signs and symptoms of impending death.
• As patients' health declines, team introduces or reintroduces hospice.
• Signs/symptoms of approaching death are developmentally appropriate (age and culture).

Examples of NQF Preferred Practices for Domain 7

Preferred Practice #26: Recognize and document the transition to the active dying phase and communicate to the patient, family, and staff the expectation of imminent death.

Preferred Practice #29: Provide adequate dosage of analgesics and sedatives as appropriate to achieve patient comfort during the active dying phase and address concerns and fears about using narcotics and of analgesics hastening death.

Preferred Practice #30: Treat the body after death with respect according to the cultural and religious practices of the family and in accordance with local law.

Implications for Oncology Nurses

This domain has been an area of attention for hospices, palliative care programs, and acute oncology settings. Many programs have developed written materials for families addressing signs of impending death or practices to help support families in these critical times.

Attention to/management of physical symptoms such as delirium can help comfort the family. ^[18,19] While most busy oncology units have limited time to comfort families after a death, intentional practices to respect and care for the body after death is an important clinical area which often can be neglected.

DOMAIN 8: ETHICAL AND LEGAL ASPECTS OF CARE

The final domain of quality palliative care is the ethical and legal aspects of care. Decisions regarding treatment preferences, life-sustaining treatments, decision making, and advance care planning are common in oncology and should be anticipated and treated in a reliable approach to facilitate ethical practice. The key recommendations within Domain 8 include the following:
• Respect patient's goals, preferences, and choices when forming basis for plan of care.
• Team is aware of and addresses complex ethical issues.
• Team is knowledgeable about relevant federal and state statutes and regulations.

Examples of NQF Preferred Practices for Domain 8

Preferred Practice #34: Convert the patient treatment goals into medical orders and ensure that the information is transferable and applicable across care settings, including long-term care, emergency medical services, and hospitals, such as the Physician Orders for Life-Sustaining Treatments Program.

Preferred Practice #35: Make advance directives and surrogacy designations available across care settings, while protecting patient privacy and adherence to Health Insurance Portability and Accountability Act regulations.

Preferred Practice #38: For minors with decision-making capacity, document the child's views and preferences for medical care, including assent for treatment, and give appropriate weight in decision making. Make appropriate professional staff members available to both the child and the adult decision maker for consultation and intervention when the child's wishes differ from those of the adult decision maker.

Implications for Oncology Nurses

These preferred practices are likely areas of opportunity for improvement across all oncology settings. Ethical dilemmas are often heightened with children and older adults. Written documentation of decisions and preferences is extremely important and greatly enhances care.

SUMMARY

This article is an introduction to a four-part series on palliative care to guide oncology nurses to initiate quality improvement efforts. People diagnosed with cancer deserve quality palliative care regardless of their stage of disease, and such care should not be reserved for the final days of life.

Educational projects such as the End of Life Nursing Education Consortium have made a concerted effort to prepare nurses to lead the charge. Ultimately, quality palliative care is aimed at insuring the best care each of us would expect if someone we cared about was seriously ill or dying.

This article is reviewed here:

The Ferrell-Virani Article Reviewed

References:

References

1.

National Consensus Project for Quality Palliative Care: Clinical practice guidelines for palliative care, 2004. Available at

http://www.nationalconsensusproject.org

. Accessed December 12, 2007.

2.

National Quality Forum. Available at www.qualityforum. org. Accessed December 12, 2007.

3.

Ferrell B: Overview of the domains of variables relevant to end-of-life care. J Palliat Med 8(suppl):22–25, 2005.

4.

American Cancer Society: Facts and figures, 2006. Available at

http://www.cancer.org/docroot/STT/stt_0_2006.asp?sitearea=STT&level=1

. Accessed December 13, 2007.

5.

Chochinov HM: Dignity-conserving care: A new model for palliative care. J Am Med Assoc 287(17):2253–2260, 2002.

6.

Institute of Medicine: Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Available at

http://www.iom.edu/Object.File/Master/47/600/Psychosocial-patients%20Report%20Bri ef%20FINAL3%20web.pdf

. Accessed November 29, 2007.

7.

Field MJ, Cassel CK (eds): Approaching Death: Improving Care at the End-of-Life. (Report of the Institute of Medicine Task Force.) Washington, DC, National Academy Press, 1997.

8.

Foley KM, Gelband H: Improving Palliative Care for Cancer: Summary and Recommendations. (Report of the Institute of Medicine & National Research Council.) Washington DC, National Academy Press, 2001.

9.

Hewitt M, Weiner SL, Simone JV (eds): Childhood Cancer Survivorship: Improving Care and Quality of Life. (Report of the Institute of Medicine & National Research Council.) Washington, DC, National Academy Press, 2003.

10.

Hewitt M, Greenfi eld S, Stovall E (eds): From Cancer Patient to Cancer Survivor: Lost in Transition. (Report of the Institute of Medicine & National Research Council.) Washington, DC, National Academy Press, 2003.

11.

Center to Advance Palliative Care. Available at

http://www.capc.org/

. Accessed December 12, 2007.

12.

Multinational Association of Supportive Care in Cancer. Available at www.mascc.org. Accessed December 13, 2007.

13.

Grant M, Hanson J, Mullan P, et al: Disseminating end-oflife education to cancer centers: Program review and evaluation. J Cancer Educ 22(3):140–148, 2007.

14.

The European Society for Medical Oncology. Available at http://www.esmo.org. Accessed December 13, 2007.

15.

Cancer Care Ontario. Available at

http://cancercare.on.ca/

. Accessed December 13, 2007.

16.

The National Coalition for Cancer Survivorship. Available at

http://www.canceradvocacynow.org/site/PageServer

. Accessed December 13, 2007.

17.

Puchalski C, Romer AL: Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 3(1):129–137, 2000.

18.

Potter J, Hami F, Bryan T, et al: Symptoms in 400 patients referred to palliative care services: Prevalence and patterns. Palliat Med 17(4):310–314, 2003.

19.

Stone P, Richardson A, Ream E, et al: Cancer-related fatigue: Inevitable, unimportant and untreatable? Results of a multi-centre patient survey. Ann Oncol 11(8):971–975, 2000.