August 2008

Grant Results

SUMMARY

The National Quality Forum (NQF) used its national consensus process to create a framework and a set of preferred practices for quality palliative care that apply across all health care settings and professions.

The NQF framework for quality palliative care is based on the eight domains of the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care issued in 2004.

Key Results

  • NQF produced a report — A National Framework and Preferred Practices for Palliative and Hospice Care Quality. The report outlines:
    • NQF's framework for evaluating the quality of palliative care.
    • Some 38 preferred practices for quality palliative care (see Appendix 2).
    • Recommendations for research to improve upon the measurement and evaluation of palliative and hospice care.
  • The full report is available on the Robert Wood Johnson Foundation (RWJF) Web site. An executive summary is available from the NQF.

Funding
RWJF provided $230,173 for this unsolicited project from December 2004 through April 2006.

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THE PROBLEM

Palliative care seeks to prevent and relieve suffering and ensure the highest possible quality of life regardless of the stage of disease or the need for other therapies (National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, 2004).

Studies note a number of difficulties in establishing consistent practices and standards for palliative care:

  • Palliative care is highly varied. It takes place in hospitals, ambulatory centers, extended care facilities, hospice and patients' homes.
  • Patients receiving palliative care may be adults or children, have an acute or a chronic condition, or be terminally ill or likely to recover.
  • Members of a palliative care team may include physicians, nurses, social workers, chaplains, nutritionists, pharmacists and other professional disciplines.

In 2000, five leading organizations — the American Academy of Hospice and Palliative Medicine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association, RWJF-funded Last Acts Partnership (now known as Caring Connections) and National Hospice and Palliative Care Organization — formed a consortium to develop the National Consensus Project on Clinical Practice Guidelines for Quality Palliative Care. The project issued its guidelines in May 2004.

In July 2004, members of the National Consensus Project task force asked staff of the National Quality Forum to initiate a consensus process to endorse a set of palliative care guidelines. The goal was to create a vehicle and incentives for organizations across the health care field to adopt these guidelines as standards of care.

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RWJF STRATEGY

Despite advances in medical care, Americans still often suffer from unnecessary pain, discomfort and lack of caring at the end of life. SUPPORT, a widely publicized research study funded by the Robert Wood Johnson Foundation (RWJF) between 1989 and 1994, found that hospitalized dying patients:

  • Still died in uncontrolled pain
  • Were hooked up to machines until just a few hours before they died
  • Did not, for the most part, have advance directives such as a living will; even if a patient had an advance directive, it was often not followed.

These findings spurred RWJF and the Open Society Institute to tackle the issue of improving care at the end of life. RWJF's most substantial programming in this area took place from 1995 through 2003.

RWJF had a three-pronged strategy to change patients' and their families' experiences at the end of life. The foundation aimed to educate and empower the public by building public awareness about the need to transform end-of-life care through several projects, including:

  • Last Acts, a campaign that mobilized a coalition of health care and consumer groups to improve end-of-life care
  • On Our Own Terms, a PBS documentary on dying produced by Bill Moyers that was seen by more than 20 million viewers
  • Five Wishes, a living will that takes into account a person's medical, personal, emotional and spiritual needs.

These and other programs were designed to build public support for better end-of-life care and to inform and empower patients and their families.

When RWJF first began making grants in this field, end-of-life care was not a standard part of most medical or nursing school curricula: many physicians and nurses did not have the training they needed to provide high quality care to patients with serious, often terminal illnesses. To address this problem, RWJF sponsored education and training programs such as Educating Physicians in End-of-Life Care and the End-of-Life Nursing Education Consortium.

To bring end-of-life care into the medical mainstream, RWJF initiated programs such as the Center to Advance Palliative Care and Promoting Excellence in End-of-Life Care (for more information see Grant Results), which have developed strategies to improve end-of-life care in hospitals, hospices and other clinical settings. These programs aimed to make palliative care more broadly available in health care facilities and to develop quality standards for palliative care.

End-of-life care has changed substantially since RWJF's initial involvement. End-of-life care is increasingly part of the medical mainstream:

  • The number of hospitals with palliative care programs has increased from fewer than 25 in the mid-1990s to more than 1,200 in 2006.
  • Almost 90 percent of medical schools now require instructional hours in palliative care.
  • In 2006, the American Board of Medical Specialties designated palliative care as a medical subspecialty.

Patients and families have more and better information to help them manage care at the end of life. For example, Five Wishes is a legal living will in 38 states. Almost 6 million copies of Five Wishes are in circulation throughout the nation, distributed through a network of more than 10,000 organizations or online.

Poor pain management, communication breakdowns between providers and patients and an absence of support for the spiritual and psychosocial needs of patients and families are not limited to end-of-life care. RWJF's initial focus on dying patients has evolved into a larger effort to improve palliative care for all patients, including those at the end of life. The distinction between these two types of care is that palliative care can be delivered to patients at any age and at any stage of illness, and can be administered alongside curative treatment. Palliative care provides better pain management and support options for patients and families and more satisfying work for the people who care for them.

RWJF's work in end-of-life care promoted a stronger system of palliative care in the United States. RWJF continues to integrate end-of-life work into efforts to improve the quality of health care received by all Americans.

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THE PROJECT

The National Quality Forum (NQF) used its national consensus process to create a framework and a set of preferred practices for quality palliative care that apply across all health care settings and professions.

The National Quality Forum is a not-for-profit membership organization created to develop and implement a national strategy for health care quality measurement and reporting. Its 113 members include hospital systems, health plans, associations, advocacy organizations, professional societies and government agencies.

The National Quality Forum follows a formal process to develop and endorse consensus standards. (Learn more about the process on the NQF Web site.)

Project Goals

The goals of this project were to:

  • Endorse a national consensus framework for measuring palliative and hospice care quality across all health care settings and professions, using the National Consensus Project's practice guidelines as a starting point.
  • Achieve national consensus on a minimum set of preferred practices for palliative care based on the framework.
  • Provide guidance on identifying performance measures that align with the framework and preferred practices.

Activities

To develop the consensus framework, a 19-member review committee (see list of members, Appendix 1) compared the National Consensus Project's 2004 guidelines with standards developed by:

To identify preferred practices, the review committee:

  • Drew from the National Consensus Project's 2004 guidelines and other sources and recommended the most important practices for consideration. These were based on the degree to which the practice affected delivering quality care.
  • Identified additional preferred practices based on committee members' experience and knowledge of the literature.

The review committee also identified research priorities to improve upon the measurement and evaluation of palliative and hospice care quality.

The review committee's recommendations went to members and nonmembers of NQF for review. NQF members voted on the refined list and results of the vote went to the NQF's board of directors for endorsement.

Other Funding

The Department of Veterans Affairs provided $25,250 for the project.

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RESULTS

  • NQF produced a report — A National Framework and Preferred Practices for Palliative and Hospice Care Quality. The full report is available on the RWJF Web site. An executive summary is available from the NQF.
  • The report includes:
    • A framework for evaluating the quality of palliative and hospice care, including:
      • Definitions for palliative and hospice care.
      • Purpose of the framework.
      • Goals, principles, scope, structural/programmatic elements and domains of palliative/hospice care.
      • Levels of measurement, outcomes, preferred practices and performance measures.
    • Some 38 preferred practices for delivering high-quality palliative and hospice care. (See Appendix 2.) The practices were derived from the National Consensus Project's eight domains of quality palliative and hospice care:
      • Structure and processes of care.
      • Physical aspects of care.
      • Psychological and psychiatric aspects of care.
      • Social aspects of care.
      • Spiritual, religious and existential aspects of care.
      • Cultural aspects of care.
      • Care of the imminently dying patient.
      • Ethical and legal aspects of care.
    • Recommendations for needed research in each of the eight endorsed framework domains, and research needs that cut across domain areas. (See Appendix 3 for primary recommendations; the complete recommendations are available online.)

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LESSONS LEARNED

  1. A consensus process can yield a broad-thinking report that is useful in moving the field forward. The National Quality Forum's consensus process involves consumers (patients and family members) and payers (insurers, health plans), as well as health care practitioners and other experts in a given field.

    "We got a much more patient-centered, broad-thinking report by bringing everyone to the table," the project director said. "You don't get that if you are just doing a research project. This, I would argue, is why a consensus process is so important. You have a framework and strategy to move the field forward." (Project Director/Burstin)
  2. Starting out with a broad framework allowed the consensus team to focus on areas that might have been missed if the goal was simply to develop quality measures. The consensus team used the National Consensus Project's eight domains of quality palliative care as a starting point for their work. Having that framework "allowed us to focus on areas that we might not have focused on, such as cultural competency," the project director said. "If people had just sat down to do measures, I'm not sure cultural competency would have been in it." (Project Director/Burstin)

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AFTER THE GRANT

The project ended with the end of RWJF funding.

In 2006, NQF endorsed nine performance measures for symptom management and end-of-life care for patients with cancer. The measures correspond well with the framework and practices endorsed in this project, the project director said.

In 2007, NQF joined other health care organizations in a RWJF-funded initiative to develop and test a single national approach to health care quality.

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GRANT DETAILS & CONTACT INFORMATION

Project

Developing a Framework and Set of Best Practices for Quality Palliative Care

Grantee

National Quality Forum (Washington,  DC)

  • Amount: $ 230,173
    Dates: December 2004 to April 2006
    ID#:  052180

Contact

Helen Burstin, M.D., M.P.H.
(202) 783-1300
hburstin@qualityforum.org

Web Site

http://www.qualityforum.org/Topics/Palliative_and_End-of-Life_Care.aspx

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APPENDICES


Appendix 1

Steering Committee for A National Framework and Preferred Practices for Palliative and Hospice Care Quality

Naomi Naierman, M.P.A. (Co-Chair)
American Hospice Foundation
Washington, D.C.

Richard Payne, M.D. (Co-Chair)
Institute on Care at the End of Life
Duke University Divinity School
Durham, N.C.

Patricia Bomba, M.D.
Excellus BlueCross BlueShield
Rochester, N.Y.

Eduardo D. Bruera, M.D.
University of Texas MD Anderson Cancer Center
Houston, Texas

Cleanne Cass, D.O.
Hospice of Dayton
Dayton, Ohio

Jerold S. Cohen, M.A., R.N.
Catholic Healthcare Partners
Cincinnati, Ohio

Betty R. Ferrell, Ph.D.
City of Hope
Duarte, Calif.

Joseph Fins, M.D.
New York Presbyterian Hospital-Weill Cornell Medical Center
New York, N.Y.

Nancy L. Fisher, M.D., M.P.H.
Washington State Health Care Authority
Olympia, Wash.

Christie L. Franklin, R.N.
AseraCare
Humble, Texas

Terry Eli Hill, M.D.
Lumetra
San Francisco, Calif.

Pamela S. Hinds, R.N., Ph.D., M.S.N.
St. Jude Children's Research Hospital
Memphis, Tenn.

Ada Jacox, Ph.D., R.N.
University of Virginia
Charlottesville, Va.

David L. Knowlton, M.A.
New Jersey Health Care Quality Institute
Trenton, N.J.

Michael H. Levy, M.D., Ph.D.
Fox Chase Cancer Center
Philadelphia, Pa.

Judith Lund Person, M.P.H.
National Hospice and Palliative Care Organization
Alexandria, Va.

Diane E. Meier, M.D.
Lilian and Benjamin Hertzberg Palliative Care Institute
New York, N.Y.

Brad Stuart, M.D.
Sutter VNA and Hospice
Emeryville, Calif.

Cary A. Zahrbock, M.S.W.
Minnesota Care Management Center
United Behavioral Health
Minneapolis, Minn.


Appendix 2

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Preferred Practices for Palliative and Hospice Care Quality

  1. Provide palliative and hospice care by an interdisciplinary team of skilled palliative care professionals, including, for example, physicians, nurses, social workers, pharmacists, spiritual care counselors and others who collaborate with primary health care professional(s).
  2. Provide access to palliative and hospice care that is responsive to the patient and family 24 hours a day, seven days a week.
  3. Provide continuing education to all health care professionals on the domains of palliative care and hospice care.
  4. Provide adequate training and clinical support to assure that professional staff are confident in their ability to provide palliative care for patients.
  5. Hospice care and specialized palliative care professionals should be appropriately trained, credentialed and/or certified in their area of expertise.
  6. Formulate, use and regularly review a timely care plan based on a comprehensive interdisciplinary assessment of the values, preferences, goals and needs of the patient and family and, to the extent that existing privacy laws permit, ensure that the plan is broadly disseminated, both internally and externally, to all professionals involved in the patient's care.
  7. Ensure that upon transfer between health care settings, there is timely and thorough communication of the patient's goals, preferences, values and clinical information so that continuity of care and seamless follow-up are assured.
  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 should reintroduce the hospice option as the patient declines.
  9. Patients and caregivers should be asked by palliative and hospice care programs to assess physicians'/health care professionals' ability to discuss hospice as an option.
  10. Enable patients to make informed decisions about their care by educating them on the process of their disease, prognosis and the benefits and burdens of potential interventions.
  11. Provide education and support to families and unlicensed caregivers based on the patient's individualized care plan to assure safe and appropriate care for the patient.
  12. Measure and document pain, dyspnea, constipation and other symptoms using available standardized scales.
  13. Assess and manage symptoms and side effects in a timely, safe and effective manner to a level that is acceptable to the patient and family.
  14. Measure and document anxiety, depression, delirium, behavioral disturbances and other common psychological symptoms using available standardized scales.
  15. Manage anxiety, depression, delirium, behavioral disturbances and other common psychological symptoms in a timely, safe and effective manner to a level that is acceptable to the patient and family.
  16. Assess and manage the psychological reactions of patients and families (including stress, anticipatory grief and coping) in a regular, ongoing fashion in order to address emotional and functional impairment and loss.
  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.
  18. Conduct regular patient and family care conferences with physicians and other appropriate members of the interdisciplinary team to provide information, to discuss goals of care, disease prognosis, advance care planning and to offer support.
  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.
  20. Develop and document a plan based on an assessment of religious, spiritual and existential concerns using a structured instrument, and integrate the information obtained from the assessment into the palliative care plan.
  21. Provide information about the availability of spiritual care services, and make spiritual care available either through organizational spiritual care counseling or through the patient's own clergy relationships.
  22. Specialized palliative and hospice care teams should include spiritual care professionals appropriately trained and certified in palliative care.
  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.
  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 and grieving, and funeral/burial rituals.
  25. Provide professional interpreter services and culturally sensitive materials in the patient's and family's preferred language.
  26. Recognize and document the transition to the active dying phase, and communicate to the patient, family and staff the expectation of imminent death.
  27. Educate the family on a timely basis regarding the signs and symptoms of imminent death in an age-appropriate, developmentally appropriate and culturally appropriate manner.
  28. As part of the ongoing care planning process, routinely ascertain and document patient and family wishes about the care setting for the site of death, and fulfill patient and family preferences when possible.
  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.
  30. Treat the body after death with respect according to the cultural and religious practices of the family and in accordance with local law.
  31. Facilitate effective grieving by implementing in a timely manner a bereavement care plan after the patient's death, when the family remains the focus of care.
  32. Document the designated surrogate/decision-maker in accordance with state law for every patient in primary, acute and long-term care and in palliative and hospice care.
  33. Document the patient/surrogate preferences for goals of care, treatment options and setting of care at first assessment and at frequent intervals as conditions change.
  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 hospital care, through a program such as the Physician Orders for Life-Sustaining Treatment (POLST) program.
  35. Make advance directives and surrogacy designations available across care settings, while protecting patient privacy and adherence to HIPAA regulations, for example, by using Internet-based registries or electronic personal health records.
  36. Develop health care and community collaborations to promote advance care planning and the completion of advance directives for all individuals, for example, the Respecting Choices and Community Conversations on Compassionate Care programs.
  37. Establish or have access to ethics committees or ethics consultation across care settings to address ethical conflicts at the end of life.
  38. For minors with decision-making capacity, document the child's views and preferences for medical care, including assent for treatment, and give them 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.


Appendix 3

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Primary Recommendations for Research Needs in Eight Framework Domains and Topics that Cross Domains

Structures of Care

  • Identify innovative arrangements for delivering, coordinating and evaluating care, including the use of interdisciplinary teams and quality improvement strategies.
  • Evaluate the interaction between outpatient, acute inpatient and long-term care venues in the overall care of patients with advanced illness.
  • Identify facilitators and barriers to coordination of care and consistency of treatment goals within existing structures.
  • Define populations with specific symptoms, informational and caregiver needs and risks of discontinuity.

Processes of Care

  • Explore processes of identifying and meeting the needs of infants, children and adolescents using developmentally appropriate care strategies.
  • Meet the palliative care needs of underserved and vulnerable populations and the implications of modifying and reorganizing the delivery of palliative and hospice care services.
  • Test the highest quality measures in important settings (e.g., hospital, nursing home, hospice, home care, ambulatory care) and among diverse populations.

Physical Aspects of Care

  • Identify and validate methods for assessing symptoms and other palliative care needs across diverse health care settings and to initiate:
    • High-quality studies of the incidence and epidemiology of pain and other symptoms, the relationship among symptoms and the clinical significance of symptoms in noncancerous conditions.
    • Studies on the best method for achieving quality improvement in pain management.
    • Larger studies of interventions to alleviate dyspnea (breathlessness) in cancer and noncancerous conditions, including the use of morphine and other opioids.

Psychological and Psychiatric Aspects of Care

  • Evaluate the short- and long-term treatment of depression in palliative care settings.
  • Evaluate the effectiveness of interventions for dementia caregiving in noncancerous populations.

Social Aspects of Care

  • Analyze the economic and social dimensions of caregiving.
  • Evaluate and test interventions to improve continuity between home and hospital and other settings in which patients receive care.
  • Evaluate nursing home-hospital continuity and to design studies that incorporate multiple settings and providers.

Spiritual, Religious and Existential Aspects of Care

  • Evaluate methods for assessing spiritual and religious needs and interventions for the existential aspects of end-of-life care.
  • Extend research in "spiritual care" beyond religious issues to understand all aspects of spirituality and the interaction of culture and spirituality.

Cultural Aspects of Care

  • Explore culture, communication, perceptions and decision-making, including provider bias and stereotyping, that may surface under duress and when structural issues arise.

Care of the Imminently Dying Patient

  • Develop interventions to enhance the education and support provided to families near the time of death.
  • Identify the special needs of pediatric patients and their families when death is imminent.
  • Identify factors contributing to the successful communication about end-of-life issues.
  • Evaluate the value of "End of Life Protocols" in the care of the imminently dying patient.

Ethical and Legal Aspects of Care

  • Initiate a rigorous research program on advance care planning to best achieve patient and family goals and to address the fundamental processes of care planning.

Topics That Cross Domains

  • Develop performance measures around palliative and hospice care.
  • Facilitate the study of methodological challenges in measurement that require focused research.
  • Launch studies regarding the epidemiology of death and dying.
  • Evaluate the delivery, financing and improvement of health care and other services.

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Reports

A National Framework and Preferred Practices for Palliative and Hospice Care Quality. A Consensus Report. Washington: The National Quality Forum, 2006. The full report is available on the RWJF Web site. An executive summary is available from the NQF.

World Wide Web Sites

www.qualityforum.org. The Web site of the National Quality Forum contains information about the project and links to download the executive summary or order the full report.

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Report prepared by: Kelsey Menehan
Reviewed by: Richard Camer
Reviewed by: Marian Bass
Program Officer: Rosemary Gibson

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