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General References
Sample final reports
Report of the Palliative Care, End-of-Life Care, And Pain Management Study Committee State of Vermont, January 2009 (PDF) 
<strong>Healthy Massachusetts Disease Management and Wellness: Focus on Diabetes, Prepared by the Massachusetts Department of Public Health, June 2009 (PDF)</strong>
Boston Public Health Commission's disparities project report
(Note: no longer available online)
<strong>Oklahoma Attorney Generals Task Force Report on End of Life Health Care - 2005</strong> file size 2MB
Nursing Homes
Issue Paper - Nurses Involvement in Nursing Home Culture Change: Overcoming Barriers, Advancing Opportunities - Executive Summary (PDF)
From the Hartford Institute for Geriatric Nursing, New York University College of Nursing, Coalition for Geriatric Nursing Organizations (CGNO), & The Pioneer Network, Spring, 2009
Guidelines for End-of-Life Care in Nursing Homes : Principles and Recommendations (PDF)
- A Project of the New York University Division of Nursing & The Montefiore Medical Center Division of Bioethics
National Guidelines and Research
Crosswalk of NQF Preferred Practices to sample policies, and suggested tools/resources:
(also broken down per workgroup section below)
http://www.capc.org/support-from-capc/capc_publications/nqf-crosswalk.pdf
Preferred practices, sample policies, and concrete tools/resources specific to:
- Workforce - Practices #1, 3, 4, 5, 22, 23
- Communication - Practices #: 6-8, 9-11, 17-21, 24-28, 31-33, 36, 38
- Access - Practices #2, 8 (also communication)
- National Framework and Preferred Practices for Palliative and Hospice Care Report Abstract
-
The National Quality Forum's Framework for Hospice and Palliative Care Powerpoint Presentation (PPT) 
Crossing the Quality Chasm - Institute of Medicine (IOM)
Six Aims for Improving the U.S. Health Care Delivery System
The Committee on the Quality of Health Care in America was formed in 1998 and charged with developing a strategy that would result in a substantial improvement in the quality of health care over the next 10 years. Its first report, "To Err is Human: Building a Safer Healthcare System" was followed by "Crossing the Quality Chasm", which addressed more widespread defects in our American health care system that "detract still further from the health, functioning, dignity, comfort, satisfaction, and resources of Americans." This report proposed a vision of a 21st-century health care system providing care that is evidence-based, patient-centered, and systems-oriented. It included six aims for improvement, that health care should be:
- Safe - avoiding injuries to patients from the care that is intended to help them.
- Effective - providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit (avoiding underuse and overuse, respectively).
- Patient-centered - providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.
- Timely - reducing waits and sometimes harmful delays for both those who receive and those who give care.
- Efficient - avoiding waste, including waste of equipment, supplies, ideas, and energy.
- Equitable - providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status.
Under these aims, the Cross the Quality Chasm report also posed 13 recommendations that could be referenced by this Expert Panel as model constructs for content and language, as they address communication, access, and workforce, at a broader yet applicable level of the health care system.
For example, related to workforce:
Recommendation 12 (pp 19 of Exec Summ): A multidisciplinary summit of leaders within the health professions should be held to discuss and develop strategies for (1) restructuring clinical education to be consistent with the principles of the 21st-century health system throughout the continuum of undergraduate, graduate, and continuing education for medical, nursing, and other professional training programs; and (2) assessing the implications of these changes for provider credentialing programs, funding, and sponsorship of education programs for health professionals.
Executive Summary of "Crossing the Quality Chasm": See pp 5-20 for 6 domains and 13 recommendations http://www.nap.edu/openbook.php?record_id=10027&page=1
Institute for Clinical Systems Improvement (ICSI)
Palliative Care Guidelines: http://www.icsi.org/guidelines_and_more/gl_os_prot/other_health_care_conditions/palliative_care/palliative_care_11875.html
NHCPO website:
Hospice Statistics and Research
http://www.nhpco.org/i4a/pages/index.cfm?pageid=3274
NHPCO Standards for Pediatric Palliative and Hospice Care:
http://www.nhpco.org/i4a/pages/index.cfm?pageID=5874
"More Research Needed to Guide Palliative Care for Older Adults, Says Recipient of AGS' Outstanding Scientific Achievement for Clinical Investigation Award" (Sean Morrison, MD)
American Geriatrics Society Newsletter, 3 rd quarter, 2008 (Vol. 39, Num. 3)
http://www.americangeriatrics.org/newsletter/2008q3/lecture.asp
Recommendations of the MA Special Commission on the Health Care Payment System (July 16, 2009)
Section 44 of Chapter 305 of the Acts of 2008 mandated the creation of a Special Commission on the Health Care Payment System to "investigate reforming and restructuring the system to provide incentives for efficient and effective patient-centered care and to reduce variations in the quality and cost of care." The Special Commission created a set of principles to guide development of payment policy recommendations, collect input from key stakeholders, assess and debate alternative approach to payment, and reach recommendations for payment policy. The Special Commission concluded that "global payment models that provide appropriate incentives for efficiency in the delivery of services, while strongly encouraging improvements in quality and access to appropriate, coordinated care should serve as the direction for payment reform."
Key features of global payment include:
- Patient-centered care and a strong focus on primary care.
- Patient choice.
- Use of pay-for-performance (P4P) incentives
- Participation by both private and public payers
- Sharing of financial risk between ACOs and carriers.
- The development of Accountable Care Organizations (ACOs)
- Strong and consistent risk adjustment.
- Cost and quality transparency.
- Widespread adoption of the medical home model.
Please see the Recommendations of the Massachusetts Special Commission on the Health Care Payment System at http://www.mass.gov/dhcfp/paymentcommission
EXPERT PANEL ON END OF LIFE CARE
Public Policy Activities and Possibilities
Significant End of Life Legislation, Regulation and Other Practices in Massachusetts
(1995-2009)
- Requirement for Hospice Licensure by the MA Dept. of Public Health (amended 2002)
- Mandated Hospice Benefit for all MA health insurance plans(1995)
- Nurse Pronouncement law (1995)
- Establishment of an End of Life Commission (1999)
- Establishment of Comfort Care Protocol for EMS (2000)
- Establishment and funding of a Pediatric Palliative Care Program (2006)
- Establishment of MA Hospice-Veteran Partnership (2006)
- Recognition of National Healthcare Decisions Day (Federal) (2007)
- Establishment of a pilot MOLST program (Section 43 of Chapter 305 of the ACTS of 2008 Health Reform legislation
- Establishment of Governor's Council on Health Care Cost and Quality/End of
- Life Subcommittee (2008)
More information
- Massachusetts bills: www.mass.gov/legis
- US Congress: go to Senator's web site
-Senator Mark Warner: Senior Navigation and Planning Act of 2009 (S1251) (Note: no longer available online)
-Senator John D. Rockefeller IV: Advance Planning and compassionate Care Act of 2009 (S1150) or see: http://www.opencongress.org/bill/111-s1150/show (Note: no longer available online)
Oregon pain management requirement ( www.oregon.gov/OMB/PainMgt.html)
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Access References
National Guidelines and Research
Crosswalk of NQF Preferred Practices to sample policies, and suggested tools/resources:
http://www.capc.org/support-from-capc/capc_publications/nqf-crosswalk.pdf
Preferred practices, sample policies, and concrete tools/resources specific to:
- Access - Practices #2, 8 (also communication)
Improving quality, reducing cost through increased access to palliative care Recommendations for Health Care Reform
Submitted by: Diane E. Meier, MD, Howard Tuch, MD, Margaret Campbell PhD, RN, Jon Keyserling, and R. Sean Morrison, MD
On behalf of The Hospice and Palliative Care Coalition
- The Center to Advance Palliative Care ( www.capc.org),
- The American Academy of Hospice and Palliative Medicine ( www.aahpm.org)
- The Hospice and Palliative Nurses Association ( www.hpna.org)
- The National Hospice and Palliative Care Organization ( www.nhpco.org)
- The National Palliative Care Research Center ( www.npcrc.org)
These recently released, robust recommendations outline forward-thinking policies aiming to increase access to quality palliative care in the United States. They fall into three categories: 1) Workforce; 2) Research to build evidence necessary for quality care and service delivery; and 3) Financial and regulatory incentives for health care organizations and providers to promote access to quality palliative care.
(Click on full document below.)
Improving Quality, Reducing Cost Through Increased Access to Palliative Care - Recommendations for Health Care Reform - June 10, 2009 (Word)
Pioneer Programs in Palliative Care
Pioneer Programs in Palliative Care: Nine Case Studies by the Milbank Memorial Fund, Co-published with The Robert Wood Johnson Foundation, 2000, 240 pages.
http://www.milbank.org/reports/pppc/0011pppc.html
TriCentral Care Program
A Program Toolkit giving you a step-by-step guide on how you can create an innovative outpatient palliative care program within your own healthcare institution.
http://www.growthhouse.org/palliative/
"Operational Features for Hospital Palliative Care Programs: Consensus Recommendations"
David E. Weissman, Diane E. Meier. Journal of Palliative Medicine. November 2008, 11(9): 1189-1194. doi:10.1089/jpm.2008.0149.
http://www.liebertonline.com/doi/abs/10.1089/jpm.2008.0149?cookieSet=1&journalCode=jpm
CAPC (Center to Advance Palliative Care) Palliative Care Consultation Service Metrics: Consensus Recommendations
http://www.capc.org/tools-for-palliative-care-programs/measurement/operational-metrics/jpm-consensus-recommendations.pdf
Financing side...
Financing Implications of Promoting Excellence in End-of-Life Care - Executive Summary
(Monograph outlining 6 model programs featuring palliative care upstream in the course of illness and concurrent with treatment to prolong life)Promoting Excellence in End-of-Life Care- National Program Office of the RWJ, directed by Ira Byock
New End-of-Life Benefits Models in Blue Cross & Blue Shield Plans (ideas from other states) http://www.promotingexcellence.org/i4a/pages/index.cfm?pageid=3793 (Note: no longer available online)
EXPERT PANEL ON END OF LIFE CARE
Access Public Policy Activities and Possibilities
2009-2010 bills filed MA state legislature
- An act establishing paid family leave (HB124 and HB4040
- An act relative to Death with Dignity (HB148) physician assisted suicide bill similar to WA and OR
- Provide continued funding for MA Pediatric Palliative Care Network (MA budget proposal FY 10)
- Encourage hospital adoption of " No One Dies Alone" which provides companions to patient who are dying and would otherwise be alone (OR)
2009-2010 bills filed US Congress
- Offers incentives (payment, NQF quality measures, compliance) for hospice and nursing home delivery of quality palliative care (Rockefeller S 1150)
- Provides access to concurrent and hospice care for children (Rockefeller S 1150)
- Requires ongoing Mortality Followback Survey to ensure process of continuous improvement in quality of care (Rockefeller S 1150)
- Establishes National Center on Palliative and End of Life Care at NIH to develop research agenda and evaluate and develop new palliative and end of life care interventions (Rockefeller S 1150)
Federal bills continued
- Enhance Medicare and Medicaid coverage of advanced illness care management services for individuals diagnoses with a life expectancy of 19 months will have access to new advanced illness care management benefit administered by hospice providers (Warner S1251)
Other activities
- Increase access by expanding MassHealth coverage:
-Add coverage for hospice to all MassHealth plans: Basic, Essential, Limited
-Include room and board at hospices residences (NY, CA) - Payers should adopt policies and standards to support and improve the process of care at the end of life (HCCQC)
- Establish performance measures for all end of life providers (HCCQC).
- Hospitals, extended care facilities and home health care organizations should, by March 2009, offer formal hospice and palliative care programs to their terminally ill patients and should ensure that these programs meet the needs of patients with different cultural expectations at the end of life (HCCQC/EOL Committee 2008 Annual Report)
- Payers should adopt policies and standards to support and improve the process of care at the end of life. (HCCQC/EOL Committee 2008 Annual Report)
- Expand private health plan coverage for hospice patients with one-year prognosis (Aetna)
- Payers should adopt specialized case management programs to support terminally ill patients and their families, e.g. Provide training to nurse case managers on advance illness issues as a required core competency. (Aetna)
United Health Care Group - A Continuum of Care: Advanced Illness to Hospice
The number of people with advanced illness (defined as those with life-limiting conditions in the last 12 to 24 months of life) continues to grow rapidly. UnitedHealthcare offers a unique portfolio of related programs to serve the needs of these individuals, support their families and extend resources to the provider community (PDF)
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Workforce References
<strong>Issue Paper - Nurses Involvement in Nursing Home Culture Change: Overcoming Barriers, Advancing Opportunities - Executive Summary (PDF)</strong>
From the Hartford Institute for Geriatric Nursing, New York University College of Nursing, Coalition for Geriatric Nursing Organizations (CGNO), & The Pioneer Network, Spring, 2009
National Guidelines and Research
Crosswalk of NQF Preferred Practices to sample policies, and suggested tools/resources
http://www.capc.org/support-from-capc/capc_publications/nqf-crosswalk.pdf
Preferred practices, sample policies, and concrete tools/resources specific to:
- Workforce - Practices #1, 3, 4, 5, 22, 23
Palliative Care Academic Career Awards: A Public-Private Partnership to Improve Care for the Most Vulnerable
Developed by CAPC and the International Longevity Center-USA, this report provides a blueprint for a nationwide palliative care faculty development initiative and proposes a public-private effort to build a national cadre of academic medical school faculty who will educate all physicians-in-training on the principles of palliative care.
http://www.capc.org/research-and-references-for-palliative-care/publications/career-awards.pdf
Also listed under "Access" above:
Improving Quality, reducing cost through increased access to palliative care Recommendations for Health Care Reform
Submitted by: Diane E. Meier, MD, Howard Tuch, MD, Margaret Campbell PhD, RN, Jon Keyserling, and R. Sean Morrison, MD on behalf of The Hospice and Palliative Care Coalition:
- The Center to Advance Palliative Care ( www.capc.org),
- The American Academy of Hospice and Palliative Medicine ( www.aahpm.org)
- The Hospice and Palliative Nurses Association ( www.hpna.org)
- The National Hospice and Palliative Care Organization ( www.nhpco.org)
- The National Palliative Care Research Center ( www.npcrc.org)
These recently released, robust policy recommendations outline forward-thinking policies aimed at increasing access to quality palliative care in the United States fall into three major categories: 1) Workforce; 2) Research to build evidence necessary for quality care and service delivery; and 3) Financial and regulatory incentives for health care organizations and providers to promote access to quality palliative care.
(Click on full document below)
Improving Quality, Reducing Cost Through Increased Access to Palliative Care - Recommendations for Health Care Reform - June 10, 2009 (Word)
Advanced Practice Nursing: Pioneering Practices in Palliative Care
This monograph illustrates successful models of pioneers in advanced practice nursing and promotes the advanced practice nurse's role in providing palliative care.
Palliative care job descriptions and staff competencies (CAPC tools):
http://www.capc.org/tools-for-palliative-care-programs/admin-tools/
American Academy of Hospice and Palliative Medicine (AAHPM)- Hospice and Palliative Care Competencies Program
Includes the HPM Fellowship curriculum including measureable outcomes and assessment tools based on a set of six ACGME general competencies as the basis.
http://www.aahpm.org/fellowship/competencies.html#delineates
The site also provides concrete tools to guide/measure systematic communication between providers and patients/families.
For example:
Competencies Toolkit:
http://hospice.stanford.edu/competencies/
EXPERT PANEL ON END OF LIFE CARE
Workforce Public Policy Activities and Possibilities
2009-2010 bills filed MA State Legislature
- An act requiring pain assessment and management in health care facilities (HB2078)
- An act requiring pain management and prescription drug abuse training for prescribing medical and health care providers (HB3479)
- An act relating to the extended care career ladder program (SB700)
- An act relating to the training for certified nurses' aides and direct care workers (SB841)
- An act relative to home health aides (allows for medication administration with appropriate certification (SB860)
2009-2010 bills filed US Congress
- Requires continuing education requirements for physicians and nurses on advance care planning and end of life care (Rockefeller S 1150)
- Establishes National Geriatric and Palliative Care Services Corps by 2012 that includes loan forgiveness, scholarships and financial incentives for doctors, nurses and other professionals to become geriatric or palliative care specialists (Rockefeller S 1150)
- Requires HHS to implement minimum training requirements in end of life at medical schools receiving federal funds (Rockefeller S1150)
- Provides incentives for providers who achieve accreditation and certification in hospice and palliative care by having skilled nursing facilities and hospital with an accredited palliative care program receive a Medicare bonus payment (Warner S 1521)
Other states
- Requires physicians to have 6 hours of CME in patient management or end of life care for licensure (OR)
- Enacted law AB 487 (1/1/02) with one-time requirement that all licensed physicians obtain 12 CMEs in pain management and treatment of terminally ill and dying by 12/31/06. (CA)
- Enacted AB791 requiring health facilities to assess pain when vital signs are taken and requires medical students to complete course work in pain management and end of life care. (CA)
- Has online-CME/CEU program to receive CMEs from University of Pittsburgh
in POLST and other end of life topics (PA) - Requires a one-time 2-hr continuing education requirement on end of life care including pain management the first time the clinician gets a license, in part to teach about the POLST form. (WV)
Other activities
- Include requirement by Board of Registration in Medicine that hospitals submit a plan for ensuring that all clinical professionals who care for patients at the end of life are educated in the delivery of culturally sensitive care (HCCQC/EOL Committee 2008 Annual Report)
- Require training in pediatric and adult palliative care at state medical schools
- Provide risk management credit to physicians for end of life education
- Require certification of prescriber and dispenser of opioids (FDA)
- Requires end of life care quality measures for each relevant provider setting (Rockefeller S 1150)
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Communication References
Shared Decision-Making at informedmedicaldecisions.org
Looking Ahead: Choices for Medical Care When You're Seriously Ill (PDF)
For more information, please visit: http://www.informedmedicaldecisions.org/patient_decision_aids.html
National Guidelines and Research
Crosswalk of NQF Preferred Practices to sample policies, and suggested tools/resources:
http://www.capc.org/support-from-capc/capc_publications/nqf-crosswalk.pdf
Preferred practices, sample policies, and concrete tools/resources specific to:
- Communication - Practices #: 6-8, 9-11, 17-21, 24-28, 31-33, 36, 38
Caring Connections, Inc.: National website on Advance Directives:
Included general information and tools on Advance Directives, including consumer and provider-friendly publications on topics including:
- Talking about end-of-life wishes
- Supporting someone who is grieving
- Caring for your loved ones
- Talking to your doctor about pain or illness
- Understanding hospice and palliative care services
- Paying for long-term care
- Caring for a seriously ill child
http://www.caringinfo.org/AdvanceDirectives
Annotated Bibliography on Instruments to Measure Care at the End of Life
An authoritative bibliography of instruments to measure the quality of care and quality of life for dying patients and their families.
Advance care planning:
http://www.chcr.brown.edu/pcoc/Advanc.htm
Medical Orders for Life-Sustaining Treatment (MOLST) Demonstration Program - June 2009 update (PDF)
EXPERT PANEL ON END OF LIFE CARE
Communication Public Policy Activities and Possibilities
2009-2010 bills filed US Congress
- Provides reimbursement for conversations about goals of care, support for completion of orders for list sustaining treatment in appropriate patient populations such as POLST, MOLST (Rockefeller S 1150)
- Establishes Advance Care Planning Telephone Hotline, clearinghouses and toolkit, (Rockefeller S 1150)
- Establishes a permanent website devoted to educating Medicare, Medicaid, CHIP and public health provider and advance directives and other health care decision (Rockefeller S 1150)
- Implements National Public Education Campaign re advance care planning by Centers for Disease Control and Prevention by 2011 (Rockefeller S 1150)
- Requires portability of advance directives across state lines (Rockefeller S 1150)
- Provides financial assistance for advance care planning through grants to Legal Services, Medicaid and others (Rockefeller S 1150)
- Provides grants to states for advance directive registries; driver's license advance directive notation (Rockefeller S 1150)
- Expands Medicare Hospice Benefit to include better education on living wills, counseling, for dying patients and respite care for families (Warner S 1251)
- Requires treating physicians, beginning in 2014, to offer Medicare patients with advanced disease such as end stage cancer, renal disease, COPD, information about advance directives and other planning tools (Warner S 1251)
- Requires more comprehensive discharge planning by hospitals, SNFs, home health agencies and hospices to include discussion with patients and families about course of treatment, likely impact on length of life and function and procedures for help in crisis. Warner S 1521)
Other states
- Expanded Medicaid home health benefit to reimburse social workers for providing advance care planning (NH)
- In collaboration between Medical Societies, Health Systems, State Hospice Association and Health Plan, adopted "Respecting Choices" in 5 health systems and health plans in metropolitan area to use uniform advance directive form. Plan to go statewide. (Minneapolis)
Other activities
- Hospitals, nursing homes, physicians and other providers should implement by 2010, a process for communicating patient's wishes for care at the end of life similar to the POLST process currently in use in OR, WA, NW, WV and other states. (HCCQC/EOL Committee 2008 Annual Report and Chapter 305, Section 43)
- Create on-line consumer on "how to choose a hospice or palliative care program" (Teno)
- Adopted hospital protocol for handling disagreements between doctor and family about stopping treatment for terminally ill patients. If physician thinks treatment would not be effective or be harmful, he/she offers opportunity to seek transfer to facility willing to provide that treatment (BIDMC and BWH)
- Create uniform health care proxy statement in multiple languages.
- Notwithstanding any general or special law to the contrary, on or before January 1, 2009, the executive office of health and human services, in consultation with the commission on end-of-life care established by section 480 of chapter 159 of the acts of 2000, shall initiate a public awareness campaign to highlight the importance of end-of-life care planning. The campaign shall include, but not be limited to, dissemination of information and other activities that educate the public about existing options for care at the end of life and how to communicate their end-of-life care wishes to family members and health care providers. (HCCQC/EOL Committee 2008 Annual Report and Chapter 305, Section 42)
This information is provided by the Health Care Quality and Cost Council.