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What is Palliative Care: The National Consensus Project and the National Quality Forum

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Title: What is Palliative Care: The National Consensus Project and the National Quality Forum


1
What is Palliative Care The National Consensus
Project and the National Quality Forum
  • Connie Dahlin, ANP, FPCN, FAAN
  • Clinical Director
  • Palliative Care Service
  • Massachusetts General Hospital
  • Boston, MA

2
  • Disclosures
  • There are no financial disclosures to make for
    Connie Dahlin.

3
  • Matt
  • 33 year old truck driver who just returned to
    college. Lives with mother who divorced his
    father when he was 10. Diagnosed with stage IV
    lung cancer. Undergoes first line chemotherapy.
    Difficult respiratory issues but stays out of
    the hospital. Second chemotherapy causes many
    side effects. Continues to decline. More fatigue
    and respiratory distress. Finally agrees to
    admission. Is DNR/DNI but develops mediastinal
    shift. Allows for pain medications and sedation,
    but waits for his father to come two days later
    before he dies.

4
  • Roland
  • 55 yr old high school physical education
    teacher. Experiences unexplained leg weakness.
    Over the course of a year , is diagnosed with
    ALS. Continues coaching for another 2 years,
    before he loses his ability to move. He also
    needs a trach and ventilatory support. He is
    maintained at home for 8 years before he develops
    a UTI, which is colonized and requires hospital
    admission. He is discharge but then decides he
    want come off his ventilator. Hospice declines to
    admit him. He goes into respiratory distress and
    is admitted to local ICU where he dies in 3 days.

5
  • SOME FACTS ON DEATH AND DYING
  • 1 We all must die, the question is when and how.
  • 2 Aging population means more chronic illnesses,
    burgeoning health care costs, thereby taxing the
    health care system.
  • 3 More technology available, the question is how
    should it be used and how it is justified.
  • 4 Care in the last year of life is expensive, it
    is the highest amount of Medicare beneficiaries.

6
Death in the United States
  • Approximately 75 of deaths occur in people over
    65
  • Approximately 25 of deaths occur in people over
    85
  • Leading caused of death
  • Heart Disease
  • Cancer
  • Cerebrovascular Disease
  • Obesity just added by the Hartford Institute

7
Death in the United States
  • 70 -75 of patients die in hospital or extended
    care facilities
  • 30 -25 of patients die in home

8
Care at Those Settings
  • JAMA study Outcomes at the Last Place of Care.
    2004
  • Hospice did well with respectful care of the
    patient and family, care coordination, pain
    management, and shared decision making. However,
    dyspnea not well managed.
  • Home care did well with care coordination, but
    lacked focus on patient and family, pain and
    symptom management, emotional support, and had
    some issues with communication.

9
Care at Those Settings
  • JAMA study Outcomes at the Last Place of Care.
    2004
  • Hospitals provided best pain and dyspnea
    management, but lacked respectful care, emotional
    support, attention to families with more
    difficulties on communication.
  • Nursing Facilities lacked information on care
    coordination, pain and dyspnea management,
    without respectful care to patient and family,
    and had major difficulties in communication.

10
Common Issues in End-of-Life Care
  • Inadequate pain and symptom management
  • Undiagnosed depression or anxiety
  • Unaddressed existential distress
  • Untreated family psychological distress
  • K. FOLEY 1997

11
Common Issues in End-of-Life Care
  • Unaddressed family fatigue
  • Lack of communication skills - personal,
    professional, cultural
  • Unrecognized healthcare provider fatigue and/or
    moral distress
  • K. FOLEY 1997

12
What constitutes Palliative Care?
  • Appropriate care when curative treatment and life
    sustaining treatment are no longer appropriate
    nor desired.
  • Aggressive, well-planned symptom control
  • Protection from burdensome interventions
  • Anticipation and planning for future symptoms to
    prevent suffering
  • Minimization of suffering
  • Maximization of patients dignity and control
  • Psychosocial support for patient and family

13
Where We Are Now
  • There are over 5000 hospice programs across the
    country
  • Hospice has created gold standard of care
  • Hospices are successfully expanding services to
    provide palliative care to patients in a variety
    of settings earlier in the course of illness
  • Over 2500 leading hospitals and long-term care
    facilities have started hospital based and
    community palliative care programs

14
Where We Need To Go
  • Expanded access for patients and families across
    health care settings since many commercial
    insurance plans do not cover hospice
  • Move palliative care upstream to time of
    diagnosis
  • Increase number of reliable, high quality
    programs that not only meet minimum standards but
    have full comprehensive services
  • Assure quality care across transitions of care

15
Definition of Hospice
  • Hospice focuses on caring, not curing and, in
    most cases, care is provided in the patient's
    home. Hospice care also is provided in
    freestanding hospice centers, hospitals, and
    nursing homes and other long-term care
    facilities.  Hospice services are available to
    patients of any age, religion, race, or illness.
    Hospice care is covered under Medicare, Medicaid,
    most private insurance plans, HMOs, and other
    managed care organizations.
  • (NHPCO 2009)

16
Definition of Palliative Care
  • Aims to relieve suffering and to support the
  • best possible quality of life for patients with
  • advanced chronic or life-threatening illnesses
  • and their families.
  • This includes both a general approach to patient
    care
  • routinely integrated with disease-modifying
    therapies,
  • as well as a growing practice specialty for
    highly trained
  • specialist physicians, nurses, social workers,
    chaplains
  • and others who work in teams.

  • (National Consensus Project 2004, 2009)

17
Definition of Palliative Care
  • Palliative Care means patient and
    family-centered care that optimizes quality of
    life by anticipating, preventing, and treating
    suffering. Palliative care throughout the
    continuum of illness involves addressing
    physical, intellectual, emotional, social and
    spiritual needs and to facilitate patient
    autonomy, access to information and choice.
  • Center for Medicaid and Medicare Services and
    National Quality Forum (Federal Register 2008)

18
The National Consensus Project is
  • A Consortium of four key national palliative care
    organizations
  • American Academy of Hospice and Palliative
    Medicine
  • Center to Advance Palliative Care
  • Hospice and Palliative Nurses Association
  • National Hospice and Palliative Care
    Organization 

19
National Consensus ProjectTask Force Members
2006-2009
AAHPM Dale Lupo, PhD Nancy Hutton, MD CAPC Diane Meier, MD, FACP
HPNA Constance Dahlin, ANP, ACHPN, FPCN Betty Ferrell, PhD, MA, FAAN, FPCN Judy Lentz, MSN, MHA NHPCO Stephen Connor, PhD John Mastrojohn, MSN, MBA Judi Lund Person, MPH
20
National Consensus Project
  • Result of Robert Wood Johnson sponsored national
    leadership conference in 2001 to develop
    standards within palliative care to promote
    better care through
  • Efficient, effective and compassionate care of
    patients and families experiencing advanced
    chronic and life-threatening illness in both
    adult and pediatric populations.
  • Assurance of quality care, including pain and
    symptom control and relief of suffering for
    patients with traumatic, acute or chronic
    conditions.
  • Access to quality palliative/hospice care from
    primary care settings to tertiary care settings,
    to rehabilitation settings, and skilled settings
    as well as the assisted living setting and the
    home setting
  • Smooth transitions and case management across
    health care settings.
  • Reduced variation among programs.

21
Examples of Key Sources Identifying Domains
  • The National Hospice and Palliative Care
    Organization.
  • Institute of Medicine Task Force on End of Life
    Care.
  • The American Geriatric Society.
  • Key papers by Emanuel, Teno, and Steinhauser.

22
National Consensus Project Assumptions
  • The guidelines represent goals and ideal
    practices that palliative care programs should
    strive to attain as opposed to minimal practices.
  • Health care quality standards will be followed
    such as safety, effective leadership, medical
    record keeping, error reduction.
  • The guidelines assume codes of ethics within each
    discipline.
  • The guidelines continue to evolve as professional
    practice, evidence base, and the health care
    system change over time.

23
National Consensus Project For Quality
Palliative Care Clinical Practice Guidelines
Eight Domains
  1. Structure and Process of Care
  2. Physical
  3. Psychological and Psychiatric
  4. Social
  5. Spiritual, Religious and Existential
  6. Cultural
  7. The Imminently Dying Patient
  8. Ethics and Law

24
Clinical Practice Guidelines
  • Establish accepted definitions of the essential
    elements in specialist palliative care that
    promote quality, consistency and reliability of
    services
  • Facilitate development and improvement of
    clinical programs, particularly those serving a
    high proportion of people with acute and
    chronically progressive conditions
  • Foster continuity of palliative care by expanding
    access to case management across settings
  • Adopted by the National Quality Forum in April to
    help establish outcome measures and set the
    foundation for JCAHO accreditation surveys
  • (National Consensus
    Project, 2004)

25
Goal 5
  • Promote recognition, stable reimbursement
    structures and accreditation initiatives through
    projects such as the National Quality Forum
    (NQF).

26
The National Quality Forum
  • Voluntary consensus standards-setting
    organization
  • 5-step process consensus standard development
    widespread review member voting and council
    approval Board of Directors action evaluation.
  • Characterized by openness, balance, due process,
    consensus, and appeals mechanism

27
Implications of NQF Endorsement
  • Legitimacy in the eyes of policy makers
  • Legitimacy and coverage implications for payers
  • Development of actionable measures for QI,
    benchmarking, and public reporting

28
National Quality Forum Document
  • A National Framework for Palliative and Hospice
    Care Quality Measurement and Reporting
  • Utilized the National Consensus Project Document
    as core principles
  • A set of preferred practices 36 Preferred
    Practices
  • Identification of 42 Recommended Research Areas
    within the NCP Domains and NQF Preferred Practices

29
Commonalities
  •  Both attempt to formalize the concept of
    palliative care by providing extended
    descriptions and definitions differentiating
    palliative from other types of care.
  • Both recommend practices on such matters as, for
    instance, how to assemble an inter-disciplinary
    palliative care team and how to ensure continuity
    of care across diverse health care settings.
  • Both operationalize palliative care theory and
    practice.

30
Differences
  • Each document has its own particular function,
  • The Framework offers a strict, formal explication
    of care as the first step in a process intended
    to generate quality measures for palliative care
  • The Guidelines, as part of the NCPs ongoing
    mission to raise awareness of the need for
    quality care, attempts to articulate a more
    expansive vision of palliative care.

31
National Consensus Project Quality in Palliative
Care Award
  • Supported by the Mayday Fund, based in New York
    City, in conjunction with the National Consensus
    Project
  • Recognizes organizations which have enhanced
    their palliative care services by implementing
    palliative care principles, espoused by the
    National Consensus Project for Quality Palliative
    Care

32
National Consensus Project Quality in Palliative
Care Award
  • For 2009-2010, recognition of National Consensus
    Project Best Practices to be recognized within,
    administered by and highlighted by the American
    Hospital Association Circle of Life Award.
  • This is to continue for 2010-2011
  • Application and criteria process available at
  • www.aha.org/aha/news-center/awards/circle-of-life
    /index.html

33
  • Center for Comprehensive Palliative Care
    Consulting Services
  • An independent company that provides consultation
    to three area hospitals, hospice houses, nursing
    homes, private homes, and the local jail. Focuses
    on meeting the needs of population with its
    diversity and bilingual services.
  • Exemplifies Domain 6 - Cultural Aspects of Care
  • Communication

34
  • Community Hospice of NE Florida
  • Community Peds Care
  • A national model for pediatric palliative and
    hospice care offering comprehensive in-home
    services that focus on the childs immediate and
    on-going concerns impacting comfort and quality
    of life.
  • Exemplifies Domain 3 -Psychological and
    Psychiatric Issues
  • Evidenced Based Psychological Assessment and
    Management

35
  • Hope Hospice and Community Service
  • Provides a unique continuum of palliative care
    services along the illness spectrum for all ages
    of patients. With the philosophy of unifying and
    coordinating services, care is provided from Hope
    Select PACE program, to Home Comfort Care and
    finally to Hope Hospice.
  • Exemplifies Domain 1 - Structure and Processes of
    Care
  • Promoting Hospice and Palliative Care along the
    Trajectory

36
  • Hospice of the Western Reserve
  • Palliative Care Program
  • The Palliative Care Program is a community based
    program including physicians, advanced practice
    nurses, social workers, music and art therapists,
    pharmacists, nursing assistants, massage
    therapists, and volunteers. Enabled 2500 patients
    to experience a better quality of life.
  • Exemplifies Domain 7- Care of Imminently Dying
  • Preference to Site of Death

37
  • Motion Picture and Television Fund
  • Palliative Care Services
  • A health care system that encompasses an assisted
    living and residential community, nursing home
    and a wellness center, using the NCP Guidelines
    to develop its program. The team provides both
    consultative and primary care with an
    interdisciplinary approach to all levels of care.
  • Exemplifies Domain 5 -Spiritual Aspects of Care
  • Assessment with Sensitivity to Diversity

38
  • Our Lady of Lourdes Memorial Hospital Inc,
    Palliative Medicine Program
  • A community multidisciplinary team that provides
    holistic care to patients including family
    meetings within 24 hours, music, massage, comfort
    blankets. Care is delivered at the nursing home
    and community living as well.
  • Exemplifies Domain 1- Structure and Process of
    Care
  • Quality Assessment and Performance Improvement

39
  • Saint Rose Dominican Hospitals
  • Palliative Care Programs
  • A health care system in Southern Nevada with
    three campuses. The program is based on a
    nurse-led consultative team with a focus on
    multiculturalism, education, and patient
    information.
  • Exemplifies Domain 4 - Social Aspects of Care
  • Skilled Social Work Assessment

40
  • Stony Brook University Medical Center
  • Survivorship and Supportive Care
  • An acute care medical program that provides
    consultation on patients with pain and symptom
    management as well as assistance for the
    transition to hospice. Their focus is on
    education and changing the culture of the
    institution.
  • Exemplifies Domain 8 - Ethical and Legal Aspects
    of Care
  • Documentation of Code Status

41
  • Virginia Commonwealth University Health System,
    Massey Cancer Center
  • Thomas Palliative Care Program
  • An acute care program which is a Palliative Care
    Leadership Program (PCLC), this program developed
    guidelines to practice and have discipline
    specific review process. Disseminated guidelines
    to all settings prisons, clinics, hospices,
    nursing homes across the state.
  • Exemplifies Domain 2 - Physical Aspects of Care
  • Evidenced-based Pain and Symptom Assessment and
    Management

42
  • Who should adopt the
  • National Consensus Project
  • Clinical Practice Guidelines?

43
All Providers Should Use Both the NCP and NQF
Documents
  • To Meet End of Life Care Demands
  • Efficient, effective management of advanced
    chronic and life-threatening illness
  • Reduced variation among both hospice and
    palliative care programs
  • Quality pain and symptom control
  • Smooth transitions and case management across
    health care settings

44
Existing Palliative Care Programs
  • Assist in achieving the highest possible quality
    of care
  • Ensures highest standards of care
  • Efficient use of resources in moving palliative
    care across specialties
  • Improved staff retention and moral
  • Benchmarking with other programs

45
New Palliative Care Programs
  • Guides Program Development
  • Validates components of program to administration
  • Better clinical outcomes in terms of pain and
    symptoms
  • Facilitates achievement of The Joint Commission
    (JCAHO) quality and pain management standards and
    ANCC (American Nurses Credentialing Center)
    Magnet status

46
Hospices
  • Adds additional aspects of care beyond hospice
    standards of participation
  • Helps move field forward

47
Nursing Homes
  • Improved patient outcomes in compliance with
    state and federal regulations
  • Facilitates partnerships for caring for patients
    with debilitating and life limiting illnesses
  • Improved patient and family satisfaction in pain
    and symptom control
  • Staff support in delivering care for long term
    patients
  • Improved staff education

48
GENERAL REFERENCES
  • Federal Register. Medicare and Medicaid Program
    Hospice conditions of participation final rule.
    June 5, 2008 (73)10932204.
  • Center to Advance Palliative Care. New Analysis
    Shows Hospitals Continue to Implement Palliative
    Care at a Rapid Pace. Press Release. New York,
    NY, April 14, 2008.
  • National Hospice and Palliative Care
    Organization. NHPCO facts and figures hospice
    care in America. November 2008.
  • National Hospice and Palliative Care
    Organization. Standards for Practice for Hospice
    Programs. Alexandria, VA. 2000.
  • World Health Organization. Definition of
    Palliative Care. World Health Organization Web
    Site.

49
NCP and NQF REFERENCES
  • Center to Advance Palliative Care. Policies and
    Tool for Hospital Palliative Care Programs A
    Crosswalk of National Quality Forum Preferred
    Practices. 2009. Accessed on capc.org June 20,
    2009.
  • National Quality Forum. A National Framework and
    Preferred Practices for Palliative and Hospice
    Care Quality. Washington, DC National Quality
    Forum, 2006.

50
REFERENCES Articles on Specific Domains
  • Domain 1
  • Ferrell, B., Connor, S., Cordes, A., Dahlin, C.,
    Fine, P., Hutton, N., Leenay, M., Lentz, J., Lund
    Person, J., Meier, D., Zuroski, K. ( 2007). The
    National Agenda for Quality Palliative Care The
    National Consensus Project and the National
    Quality Forum. Journal of Pain and Palliative
    Care. 33(6)737-744.
  • Domain 2
  • Blouin, G., Fowler, B., Dahlin, C. (2008) The
    National Agenda for Quality Palliative Care
    Promoting the National Consensus Projects Domain
    on Physical Symptoms and the National Quality
    Forums Preferred Practices for Physical Aspects
    of Care. Journal of Pain and Palliative Care
    Pharmacotherapy. 23(3)1-7.
  • Domain 3
  • Hultman, T., Reder, ER., Dahlin, C. (2008)
    Improving Psychological and Psychiatric Aspects
    of Palliative Care The National Consensus
    Project and the National Quality Forum Preferred
    Practices for Palliative and Hospice Care.
    Omega-Journal of Death and Dying. 57(4)323-339.
     

51
REFERENCES Articles on Specific Domains
  • Domain 4
  • Altilio, T., Otis-Green, S. Dahlin, C. (2008). 
    Applying the National Quality Forum Preferred
    Practices for Palliative and Hospice Care A
    Social Work Perspective, Journal of Social Work
    in End-of-Life and Palliative Care, 4(1).
  • Domain 5
  • Scott, K., Thiel, MM., Dahlin, C. (2008) The
    National Agenda for Quality Palliative Care The
    Essential Elements of Spirituality in End of Life
    Care. Chaplaincy Today. 24(2)15-21.
  • Domain 6
  • Dahlin, C. (2007) Promoting Culture within Pain
    and Palliative Care National Consensus Project
    Guidelines and National Quality Forum Preferred
    Practices. American Academy of Pain Management
    The Pain Practitioner. 17(2) 7-9.
  • Domain 7
  • Lynch, M., Dahlin, C. (2007). Care of the
    Imminently Dying. Journal of Hospice and
    Palliative Nursing. Vol9(6)316-322.

52
REFERENCES Articles on Specific Domains
  • Domain 8
  • Colby, W., Dahlin, C., Lantos, J., Carney, J.,
    Christopher, M. (2009). Consensus Standards for
    Palliative Care from the National Quality Forum
    and the National Consensus Project. HealthCare
    Ethics Committee Forum. In press.
  • Used As Basis for Practice
  • Piper, B., Borneman, T., Sun, V., Koczywas, M.,
    Uman, G., Ferrell, B., James R.(2008).
    Cancer-Related Fatigue Role of Oncology Nurses
    in TranslatingNational Comprehensive Cancer
    Network Assessment Guidelines intoPractice. 
    Clinical Journal of Oncology Nursing, 12(5)
    37-47.
  • Grant, M., Elk, R., Ferrell, B., Morrison, RS.,
    von Gunten, CF. Current Status ofPalliative
    Care, Education, and Research. (Submitted 2009)
    CA A Cancer Journal forClinicians

53
National Consensus Project Clinical Practice
Guidelines for Quality Palliative Care
  • For more information and access to the Full
    Guideline Document which is available for free
    download
  • www.nationalconsensusproject.org
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