Appendix B

Recommendations of the Institute of Medicine’s Reports Approaching Death (1997) and When Children Die (2003): Progress and Significant Remaining Gaps

Significant progress has been made in improving the care of people near the end of life since the publication of the Institute of Medicine (IOM) reports Approaching Death: Improving Care at the End of Life (IOM, 1997) and When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (IOM, 2003), yet gaps still remain. This appendix highlights just some of the advances that have been made, as well as a selection of the areas in which efforts are still needed.

APPROACHING DEATH

1997 Recommendation 1: People with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care.

• As of 2009, 63 percent of U.S. hospitals with at least 50 beds, 85 percent of hospitals with more than 300 beds, and all Veterans Administration hospitals reported having a palliative care team—an increase of 138 percent from 2000 (CAPC, 2011; Edes et al., 2007; Morrison et al., 2011). In 2011, an estimated 1.65 million patients received hospice services; a million of them died under hospice care during that year (NHPCO, 2012a). In comparison, Approaching Death (IOM, 1997) notes that 390,000 patients were served by hospice in 1995, representing just 17 percent of all deaths that year.

• In 2001, 19 percent of all Medicare decedents accessed hospice for 3 or more days. By 2007, this proportion had increased to 30 percent (NHPCO, 2012a).
• A number of demonstration projects related to end-of-life care, including those of the Sutter Medical Network, Kaiser Permanente, and Aetna’s Compassionate Care Program, have been completed, creating potential new care delivery models (Brumley and Hillary, 2002; Brumley et al., 2007; Krakauer et al., 2009; Labson et al., 2013; Meyer, 2011; Spettell et al., 2009).
• Additional pilot efforts have taken place in difficult-to-serve rural areas.
  • – A National Rural Health Association Technical Assistance Project, funded by the Health Resources and Services Administration, Office of Rural Health Policy (HRSA-ORHP), provided assistance in “Community Oriented Planning for Palliative Care” to three rural communities. One of these efforts focused on linkages among service agencies and developed a volunteer program to support patients with complex care issues (Stratis Health, 2009).
  • – A separate rural pilot program involved 10 rural Minnesota communities that established or strengthened local palliative care programs through the Minnesota Rural Palliative Care Initiative (October 2008 to April 2010). As of April 2011, 6 of the 10 were enrolling patients and providing interdisciplinary palliative care services, while the other 4 had developed and/or improved processes to enhance palliative care services (Stratis Health, 2011).
• The Center to Advance Palliative Care,¹ established at Mount Sinai School of Medicine in New York City with funding from the Robert Wood Johnson Foundation (RWJF) in 1999, is a national resource providing health care professionals with tools, training, and technical assistance to increase access to quality palliative care services in hospitals and other health settings. It also works to improve relevant payment and regulatory policies.

Remaining gaps:

• Only about two-thirds of hospitals nationwide offer some type of palliative care program, and the lessons learned in centers of palliative care excellence are not available to everyone (NHPCO, 2012a).

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¹See http://www.capc.org (accessed December 17, 2014).

• Patients in small hospitals (those with fewer than 50 beds, which represent about one in five U.S. hospitals), public hospitals (54 percent), and sole community provider hospitals (40 percent)² have much less access to palliative medicine. These institutions also typically serve uninsured and rural Americans (NHPCO, 2012a).
• Accreditation standards for hospitals and nursing homes do not currently require that hospitals offer a quality palliative care program; however, the Joint Commission has established a voluntary advanced certification program for palliative care programs (Joint Commission, 2014).
• The rate of health care transitions among fee-for-service Medicare beneficiaries increased between 2000 and 2009, including the rate of transitions both in the last 90 days of life and in the last 3 days of life (Teno et al., 2013).
• Caregiving takes an enormous emotional, physical, and financial toll on individuals, and this role could be better supported by health care providers and employers and through public policy (Abernethy et al., 2008; Coalition to Transform Advanced Care, 2013; DOL, 2013; Kilbourn et al., 2011; Payne et al., 1999; Reinhard et al., 2012).
• Despite some positive trends in integrating palliative and disease-specific treatment, greater efforts are needed (Matlock et al., 2010). As long as palliative care is considered “separate from” the main business of health care, it is vulnerable to being omitted or ignored.

1997 Recommendation 2: Physicians, nurses, social workers, and other health professionals must commit themselves to improving care for dying patients and to using existing knowledge effectively to prevent and relieve pain and other symptoms.

• The number of palliative care teams within hospital settings has increased by approximately 148 percent, from more than 600 in 2000 to more than 1,600 in 2012 (CAPC, 2012).

Remaining gaps:

• Studies of pain management and symptom burden have shown undertreatment by health care providers (Kutner et al., 2001; Swetz et al., 2012; Wilkie and Ezenwa, 2012).
• A 2011 IOM report also notes persistent undertreatment of pain near the end of life (IOM, 2011).

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²Totals add to more than 100 percent because some hospitals are in more than one category.

• There is little objective information about the knowledge and attitudes of health professionals regarding care of patients near the end of life.
• A greater emphasis is needed on team care and coordinated services across care settings.

1997 Recommendation 3: Because many problems in care stem from system problems, policy makers, consumer groups, and purchasers of health care should work with health care practitioners, organizations, and researchers to

1. strengthen methods for measuring the quality of life and other outcomes of care for dying patients and those close to them;

• The National Consensus Project for Quality Palliative Care (NCP), launched in 2002, represents the nation’s major hospice and palliative care organizations and has developed and disseminated three versions of its Clinical Practice Guidelines for Quality Palliative Care (2004, 2009, and 2013) (Dahlin, 2009, 2013; NCP, 2004).
• The National Quality Forum (NQF) used these guidelines to develop its report A National Framework and Preferred Practices for Palliative and Hospice Care Quality, published in 2006 (NQF, 2006).
• With the Assessing Care of Vulnerable Elders (ACOVE) initiative, RAND Corporation developed a large set of quality indicators, including indicators relevant or specific to care near the end of life (Walling et al., 2010; Wenger et al., 2007).
• The PEACE Project (Prepare, Embrace, Attend, Communicate, Empower) reviewed 174 potential measures of quality for hospice and palliative care, and gave 34 high ratings (Hanson et al., 2010; Schenck et al., 2010).
• The Measuring What Matters initiative, an effort by the American Academy of Hospice and Palliative Medicine (AAHPM) Quality and Practice Standards Task Force and the Hospice and Palliative Nurses Association (HPNA) Research Advisory Group, seeks to identify a set of basic, advanced, and aspirational evidence-based performance measures that are relevant to all hospice and palliative care programs (American Academy of Hospice and Palliative Medicine, undated-a,b,c).
• A Toolkit of Instruments to Measure End-of-Life Care was developed³ and is accepted and widely used in the field (Mularski et al., 2007).

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³See http://www.chcr.brown.edu/pcoc/toolkit.htm (accessed December 17, 2014); http://www.chcr.brown.edu/pcoc/resourceguide/resourceguide.pdf (accessed December 17, 2014).

• • – as the “family interview” quality assessment tool by almost 900 National Hospice and Palliative Care Organization (NHPCO) hospice member organizations, which have created a database of several hundred thousand family surveys that are a rich resource for new research, including studies of the quality of care and outcomes for patients with dementia and cancer;
  • – in informing the development of national, state, and local indicators of end-of-life care quality; and
  • – in a range of other research.

2. develop better tools and strategies for improving the quality of care and holding health care organizations accountable for care at the end of life;

• NHPCO now reports data related to patient outcomes and measures; family evaluation of hospice care, palliative care, and bereavement services; and team attitudes and relationships (NHPCO, undated-a).
• Medicare’s Hospice Quality Reporting Program (HQRP), established under the Patient Protection and Affordable Care Act (ACA), requires hospice programs to report quality data publicly (CMS, undated; HHS, 2013).⁴
  • – Hospices were initially required by the Centers for Medicare & Medicaid Services (CMS) to report on two measures: first reports on Quality Assessment and Performance Improvement programs were due in January 2013, and those on pain control performance, using NQF’s pain measure (#0209), by April 2013.
  • – Beginning in 2014, however, these previously used measures will be discontinued, and the hospices will be required under the HQRP to complete and submit to CMS the Hospice Item Set (HIS), which collects data on seven NQF-endorsed measures.
  • – In addition to the HIS quality reporting requirements, CMS will require that hospices, starting in 2015, complete the Hospice Experience of Care Survey, which will gather information from caregivers of deceased hospice patients about patient and family experiences with hospice care.
• NHPCO has developed a Quality Partners performance improvement program and additional quality resources for hospices (NHPCO, undated-b).

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⁴Patient Protection and Affordable Care Act of 2010, Public Law 111-148, 111th Cong., 2d sess. (March 23, 2010), § 3004(c).

3. revise mechanisms for financing care so that they encourage rather than impede good end-of-life care and sustain rather than frustrate coordinated systems of excellent care;

• The Medicare Hospice Benefit covered hospice services for more than 1.1 million beneficiaries in 2010 (MedPAC, 2012). To elect the Medicare Hospice Benefit, patients must forgo all curative treatments and opt solely for comfort care. Eligibility is based on a life expectancy of 6 months or less (CMS, 2013a).
• Demonstration projects at Sutter Medical Network, Kaiser Permanente, and Aetna, noted above, have successfully tested an expanded version of hospice that uses the concept of “concurrent care,” which does not require patients to give up curative treatments, a major barrier to hospice enrollment (Brumley and Hillary, 2002; Brumley et al., 2007; Krakauer et al., 2009; Labson et al., 2013; Meyer, 2011; Spettell et al., 2009).
• The ACA amends current law regarding pediatric hospice care to eliminate the requirement for electing either curative or hospice care when it is paid for through Medicaid and state Children’s Health Insurance Programs (CHIPs).⁵
• The ACA further calls for a concurrent care demonstration program to test whether concurrent care would save money while improving Medicare patients’ quality of life.⁶ In March 2014, CMS launched the Medicare Care Choices Model, which will allow selected Medicare-certified hospices to provide palliative care services to patients with certain serious advanced illnesses who meet the Medicare Hospice Benefit eligibility criteria but are still receiving curative care (CMS, 2014).
• A new Medicare-Medicaid Coordination Office is established under the ACA, and is charged with facilitating the integration and alignment of federal Medicare and state Medicaid funding into a single source of financial support (CMS, 2013b).
• Models of managed care for the dually eligible have shown promise among certain populations, including individuals in nursing homes and those with advanced dementia (Brown and Mann, 2012; Goldfeld et al., 2013; Kane et al., 2002).

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⁵Patient Protection and Affordable Care Act of 2010, Public Law 111-148, 111th Cong., 2d sess. (March 23, 2010), Section 2302 Concurrent Care for Children.

⁶Patient Protection and Affordable Care Act of 2010, Public Law 111-148, 111th Cong., 2d sess. (March 23, 2010), Section 3140 Medicare Hospice Concurrent Care Demonstration Program.

Remaining gaps:

• The hospice care payment methodology and the base rates have not been recalibrated since the benefit was established in 1983 (MedPAC, 2012).
• In 2009, the Medicare Payment Advisory Commission (MedPAC) made recommendations to reform the hospice payment system so it would provide relatively higher payments at the beginning and end of the hospice stay (U-shaped payment curve), rather than the current equal daily payment (MedPAC, 2009).
• Under a 2009 CMS rule, the Budget Neutrality Adjustment Factor (BNAF)—a key factor in calculating the Medicare hospice wage index—will be phased out over 7 years, resulting in a permanent reduction in hospice reimbursement rates of approximately 4.2 percent (CMS, 2009a; Hospice Action Network, 2013).
• The ACA alters the Medicare hospice rate formula, wage index, and payment rate through
  • – introduction of a productivity adjustment factor, which will lower annual hospice payments by an additional 11.8 percent over the next decade (CMS, 2013c; Hospice Action Network, 2013); and
  • – reduction of the hospice market basket update by 0.3 percentage points (CMS, 2013c).
• CMS’s Bundled Payments for Care Improvement Initiative specifically excludes hospice services (CMS, 2013d).
• Financial incentives still drive the volume of services delivered and lead to fragmentation of the health care system and high costs (Kamal et al., 2012; Kumetz and Goodson, 2013; MedPAC, 2011; Schroeder and Frist, 2013).

4. reform drug prescription laws, burdensome regulations, and state medical board policies and practices that impede effective use of opioids to relieve pain and suffering.

• In 2004, the Federation of State Medical Boards of the United States, Inc., adopted new revised management guidelines as the “Model Policy for the Use of Controlled Substances for the Treatment of Pain,” emphasizing the problem of undertreatment (FSMB, 2004).⁷

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⁷State-by-state opioid prescribing policies can be found at http://www.medscape.com/resource/pain/opioid-policies (accessed December 17, 2014).

• As part of its End of Life initiatives, RWJF funded researchers at the University of Wisconsin to support their work in assessing laws, regulations, and guidelines relating to pain treatment (Patrizi et al., 2011; RWJF, 2008).
  • – Achieving Balance in Federal and State Pain Policy: A Guide to Evaluation, published by the University of Wisconsin Pain & Policy Studies Group in 2000 and updated in 2003, presents findings of a systematic evaluation of pain-related policies of the federal government, the 50 states, and the District of Columbia. Subsequent versions of this guide have been supported by the American Cancer Society, the American Cancer Society Cancer Action Network, and the LIVESTRONG Foundation (Pain & Policy Studies Group, 2014a).
  • – From 2000 to 2003, RWJF funded the development of Achieving Balance in State Pain Policy: A Progress Report Card, which graded all states based on their policy content. The report card is currently supported by the American Cancer Society, the American Cancer Society Cancer Action Network, and the LIVESTRONG Foundation (Pain & Policy Studies Group, 2014b). The most recent report card, for calendar year 2013, found that
    • – 96 percent of states received a grade higher than C, an improvement from 88 percent in 2008;
    • – 15 states received a grade of A, indicating state policies that best balance pain management and drug control, while only 8 states (Alaska, Illinois, Louisiana, Missouri, Nevada, Oklahoma, Tennessee, and Texas) received below a B, and no states received below a C; and
    • – since 2006, no state has seen a reduction in its pain policy grade.

Remaining gaps:

• Physicians report persistent opinions—voiced by patients’ families, other physicians, or other health care professionals—that common palliative practices, including palliative sedation and prescribing of pain medications for symptom management, are euthanasia or murder (Goldstein et al., 2012).
• A 2007 review of state pain policies notes that “potential barriers [to pain management] are restrictive drug control and health care policies governing the medical use of prescription medications for pain management, palliative care, or end-of-life care” (Gilson et al., 2007, p. 342).

• A 2011 IOM report also recognizes persistent undertreatment of pain near the end of life. The report acknowledges that restrictive regulatory and law enforcement policies negatively impact the appropriate use of opioid drugs for all patients experiencing pain, and that “frequently [hospice and palliative care programs] must rely on opiate medications at levels that would be inappropriate in other, nonterminal situations” (IOM, 2011, p. 85).

1997 Recommendation 4: Educators and other health professionals should initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have relevant attitudes, knowledge, and skills to care well for dying patients.

• AAHPM, which began with 250 founding member physicians in 1988, had nearly 5,000 members as of mid-2013 (American Academy of Hospice and Palliative Medicine, undated-d).
• As of the start of the 2014-2015 academic year, there were 107 accredited subspecialty training fellowship programs in the United States, collectively producing approximately 227 new palliative medicine physicians per year (ACGME, 2014).
• Accreditation standards for undergraduate baccalaureate nursing programs, adopted by the American Association of Colleges of Nursing in 2008, specify that all baccalaureate nursing graduates should be prepared to “implement patient and family care around resolution of end-of-life and palliative care issues, such as symptom management, support of rituals, and respect for patient and family preferences” (AACN, 2008, p. 31).
• The Education in Palliative and End-of-Life Care (EPEC) project began in 1999 as a train-the-trainer program for physicians and other health professionals, geared to teaching both its curriculum and educational approaches to improving palliative care. As of 2010, there were more than 2,000 EPEC trainers in the United States and 16 other countries (EPEC, 2012).
• In 2000, the End-of-Life Nursing Education Consortium (ELNEC) project began providing undergraduate and graduate nursing faculty, continuing education providers, staff development educators, specialty nurses, and others with training in palliative care so they could teach this essential information to nursing students and practicing nurses. As of April 2013, more than 15,400 nurses and other health care professionals had received ELNEC training, and in turn had returned to their institutions and communities to train more than 390,000 nurses and other health care providers (AACN, 2014a; ELNEC, 2013).

• Around this same time, the End-of-Life/Palliative Education Resource Center⁸ was launched to share educational resource material among the community of health professional educators involved in palliative care education. It continues to be an authoritative source of information today.
• The Project on Death in America (PDIA) Faculty Scholars program (1995-2003) selected 87 scholars (from 740 applicants), 83 percent of whom were physicians and 13 percent nurses. An analysis of the scholars’ subsequent careers found that the program was “successful in . . . developing a core group of clinical and academic leaders to advance the field of palliative care” (Sullivan et al., 2009, p. 157).
• PDIA’s Social Work Leadership and Development Awards funded 42 social work leaders and led to the first Social Work Summit on End-of-Life and Palliative Care in 2002 (PDIA, 2004; SWHPN, undated). The work continues today under the auspices of the Social Work Hospice and Palliative Care Network, which has more than 500 members.⁹

Remaining gaps:

• The medical school curriculum is required to cover end-of-life care (Liaison Committee on Medical Education, 2013); education in palliative care is offered in 99 percent of U.S. medical schools, usually as part of another course; and all medical schools offer some type of instruction on death and dying, although the average total instruction is only 17 hours in the 4-year curriculum (Dickinson, 2011).
• While structured medical school curricula in hospice and palliative medicine, especially those that incorporate experiential and clinical aspects, have demonstrated effectiveness, they still are not widespread (Quill et al., 2003; Ross et al., 2001; von Gunten et al., 2012).
• Hospice and palliative medicine content is relatively lacking in many board certification examinations in specialties in which basic palliative care is especially relevant, accounting for only 2 percent of the board certification exam in oncology (ABIM, 2013a) and 3 percent in general internal medicine (ABIM, 2013b).
• In 2011-2013, only 3 of the 49 accredited U.S. schools of public health offered a course on end-of-life care policy. Another 6 public

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⁸See http://www.eperc.mcw.edu/EPERC.htm?docid=67983 (accessed December 17, 2014).

⁹See http://www.swhpn.org (accessed December 17, 2014).

• health schools offered some content on end-of-life concerns, but most of these offerings embedded this content in courses on aging policy and so did not consider the entire life span (Lupu et al., 2013).

1997 Recommendation 5: Palliative care should become, if not a medical specialty, at least a defined area of expertise, education, and research.

• In 2006, the American Board of Medical Specialties approved hospice and palliative medicine as a medical subspecialty of 10 participating boards, and the Accreditation Council for Graduate Medical Education voted to accredit fellowship training programs in this subspecialty. By 2009, CMS had approved palliative medicine as a subspecialty (CMS, 2009b).
• In the United States, there were 2,887 physicians certified by the American Board of Hospice and Palliative Medicine as of 2008, and there were 566 advanced practice nurses certified by the National Board for Certification of Hospice and Palliative Nurses (NBCHPN^®) and almost 10,771 NBCHPN^®-certified registered nurses as of March 2011 (CAPC, 2011). Between 2008 and 2012, 6,356 physicians across all 10 participating board specialties became board certified in hospice and palliative medicine (ABEM, 2013; ABFM, 2013; ABIM, 2013c; ABP, 2013; ABPMR, 2013; ABPN, 2013; ABS, 2013).¹⁰
• Approximately 4,400 physicians currently practice hospice and palliative medicine, as defined by board certification or membership in AAHPM (Lupu and AAHPM Workforce Task Force, 2010). Most practice this specialty part-time, yielding an estimated palliative physician workforce of 1,700-3,300 full-time equivalent (FTE) physicians.
• Since 2008, the National Association of Social Workers (NASW) has offered specialty certification in hospice and palliative care; as of 2014, there are 18 advanced practice specialty credentials offered by NASW (NASW, 2014).
• Concepts associated with pain management and palliative care are part of curriculum standards in pharmacotherapy (ACPE, 2011).
• A 2012 survey found that 82 percent of pharmacy schools offered some coursework on end-of-life care, typically as learning modules or lectures rather than devoted classes (Dickinson, 2013); on average, 6.2 hours was devoted to teaching students about death

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¹⁰Personal communication, S. McGreal, ABMS, February 4, 2014.

• and dying (Dickinson, 2013), an increase from 3.9 hours in 2001 (Herndon et al., 2003).
• Chaplains are certified by the Board of Chaplaincy Certification Inc., an affiliate of the 4,500-member Association of Professional Chaplains (BCCI, 2013). Specialty certification in palliative care (BCC-PCC) was introduced in 2013 as the first in an expected series of specialty chaplaincy certifications (APC, 2013).

Remaining gaps:

• An estimated 4,487 hospice and 10,810 palliative care physician FTEs are needed to staff the current number of hospice- and hospital-based palliative care programs at appropriate levels (Lupu and AAHPM Workforce Task Force, 2010).
• The Board of Pharmacy Specialties has considered adding pain and palliative medicine as a specialty, but it has yet to do so (BPS, 2011).

1997 Recommendation 6: The nation’s research establishment should define and implement priorities for strengthening the knowledge base for end-of-life care.

• In 1997, the Director of the National Institutes of Health (NIH) designated the National Institute of Nursing Research (NINR) as NIH’s lead institute for end-of-life research. In 2009, NINR established the Office of Research on End-of-Life Science and Palliative Care, Investigator Training, and Education (OEPC) (NINR, 2012).
• In 2013, NINR published Building Momentum: The Science of End-of-Life and Palliative Care: A Review of Research Trends and Funding, 1997-2010, which reviews the state of the research in end-of-life and palliative care since the 1997 IOM report Approaching Death was issued (NINR, 2013a). Among its findings are the following:
  • – There was a tripling of publications on end-of-life and palliative care between 1997 and 2010.
  • – Published studies focus primarily on advance care planning, pain and symptom management, and locations and types of care.
  • – Research was supported by 37 federal organizations and more than 500 private nongovernmental organizations; an increase in funding from NIH has been seen since 1997, but so, too, has a reduction in private funding (from 48.5 percent of research support in 1997 to 24.8 percent in 2010).

• With support from a number of public and private funders, the National Palliative Care Research Center (NPCRC)¹¹ establishes priorities for palliative care research, works to develop a new generation of palliative care researchers, and coordinates and supports studies of ways to improve care for patients and families. The center’s partner organization, the Center to Advance Palliative Care, enables rapid translation of these research findings into clinical practice.
• The Palliative Care Research Cooperative Group (PCRC), established in 2010, offers a mechanism for connecting researchers and clinicians across varied clinical settings; it facilitates timely completion of complex studies, including randomized controlled trials, by pooling resources and expertise across sites (Abernethy et al., 2010).
• The Patient-Centered Outcomes Research Institute (PCORI) was established under the ACA. Its research priorities and agenda are in line with many of the topics that require further study in the field of palliative care (PCORI, 2014).¹²

Remaining gaps:

• The 2013 NINR review mentioned above (NINR, 2013a) found a dearth of research on racial and ethnic populations; pediatric populations; caregiving; and ethical, cultural, and spiritual aspects of end-of-life care.
• A 2006 study found that more than 25 percent of published palliative medicine research was performed with no acknowledged extramural funding, and fewer than one-third of published studies were supported by NIH funding (Gelfman and Morrison, 2006).
• As of 2009, there were only 114 active NIH grants supporting palliative care research (CAPC, 2011).
• Palliative care accounted for only 0.2 percent of all NIH grants between 2006 and 2010 (Gelfman et al., 2010).
• The present report identifies a number of areas that warrant further research, including but not limited to
  • – the development and application of evidence-based measures of quality of care near the end of life;
  • – approaches to prognosis and the impact of more accurate prognosis on quality of care, quality of life, and other outcomes;

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¹¹See http://www.npcrc.org (accessed December 17, 2014).

¹²Patient Protection and Affordable Care Act of 2010, Public Law 111-148, 111th Cong., 2d Sess. (January 5, 2010), § 6301.

• • – diffusion of models of end-of-life care that have been found to be effective;
  • – the impact of the organization and financing of the health care system on the delivery, quality, and cost of care for patients near the end of life;
  • – financial, physical, and emotional impacts on caregivers;
  • – patient-provider communication and patient and family decision making near the end of life;
  • – pediatric advance care planning and involvement of pediatric patients in decision making about their care near the end of life; and
  • – the development of meaningful-use criteria relating to end-of-life care and advance care planning and the impact of these criteria on outcomes.

1997 Recommendation 7: A continuing public discussion is essential to develop a better understanding of the modern experience of dying, the options available to patients and families, and the obligations of communities to those approaching death.

• Since 1997, numerous public education efforts focused on issues of advance care planning and palliative care have been launched. These campaigns have had varying sponsorship, and some have been coalition efforts. Their goals have varied, but many have stressed
  • – the importance of advance care planning (“having the conversation”),
  • – what palliative care and hospice are, and
  • – the right to good pain management.
• Numerous public education and engagement efforts and campaigns have begun and/or continue, including
  • – The Conversation Project and the Institute for Healthcare Improvement’s (IHI’s) Conversation Ready Initiative (http://theconversationproject.org);
  • – DeathWise (https://www.deathwise.org);
  • – Engage with Grace (http://www.engagewithgrace.org);
  • – Death Cafes (http://www.deathcafe.com);
  • – Death over Dinner (http://www.deathoverdinner.org, http://blog.tedmed.com/?tag=death-over-dinner [accessed December 17, 2014]);
  • – Project Compassion (http://project-compassion.org);

• • – Aging with Dignity and Five Wishes (http://agingwithdignity.org; http://www.agingwithdignity.org/five-wishes.php [accessed December 17, 2014]);
  • – Community Conversations on Compassionate Care (Compassion and Support) (https://www.compassionandsupport.org);
  • – National Healthcare Decisions Day (http://www.nhdd.org);
  • – It’s About How You LIVE campaign (NHPCO Caring Connections) (http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3380 [accessed December 17, 2014]);
  • – Life Before Death (The Lien Foundation) (http://www.lifebeforedeath.com/index.shtml [accessed December 17, 2014]);
  • – Before I Die (http://beforeidie.cc);
  • – Death Clock (http://www.deathclock.com);
  • – Time of Death (http://www.sho.com/sho/time-of-death/home [accessed December 17, 2014]);
  • – PBS’s “On Our Own Terms: Moyers on Dying” (http://www.pbs.org/wnet/onourownterms [accessed December 17, 2014]); – Honoring Choices, the Minnesota/Twin Cities Public Television documentary series and related materials (http://www.honoringchoices.org);
  • – A Good Day to Die (http://thediemovie.wordpress.com);
  • – Ways to Live Forever (http://trailers.apple.com/trailers/independent/waystoliveforever [accessed December 17, 2014]);
  • – How to Die in Oregon (http://www.howtodieinoregon.com/trailer.html [accessed December 17, 2014]);
  • – Amour (http://www.sonyclassics.com/amour);
  • – PBS Frontline documentary “Facing Death” (http://www.pbs.org/wgbh/pages/frontline/facing-death [accessed December 17, 2014]); and
  • – Inside Out documentary “Quality of Death: End of Life Care in America” (http://insideout.wbur.org/documentaries/qualityofdeath [accessed December 17, 2014]).
• Two of the National Rural Health Association’s three Technical Assistance Project community-based teams—in Franklin, North Carolina, and Ruleville, Mississippi—focused their efforts on developing provider and community education and outreach plans around advance directives (Stratis Health, 2009).

Remaining gaps:

• Misunderstandings persist among both the general public and health care providers about the differences in meaning of such terms as “palliative care,” “end-of-life care,” and “hospice,” as

• well as “agent,” “surrogate,” “caregiver,” and “family” (CAPC, 2011; CHCF, 2012).
• The persistent reluctance to talk about death—among clinicians, patients and families, and policy makers—remains a barrier to appropriate care at the individual level and to social policies that would improve the quality of life of dying people and their families (Pew Research Center, 2009, 2013; Walling et al., 2008).

WHEN CHILDREN DIE

2003 Recommendation 1: Pediatric professionals, children’s hospitals, hospices, home health agencies, professional societies, family advocacy groups, government agencies, and others should work together to develop and implement clinical practice guidelines and institutional protocols and procedures for palliative, end-of-life, and bereavement care that meet the needs of children and families.

• NHPCO developed Standards of Practice for Pediatric Palliative Care and Hospice (NHPCO, 2009), which identifies four diagnostic categories of patients who should be offered palliative care and/or hospice services. They are children with
  • – “life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be beneficial alongside attempts at life-prolonging treatment and/or if treatment fails;
  • – conditions where early death is inevitable and there may be long periods of intensive treatment aimed at prolonging life, allowing participation in normal activities, and maintaining quality of life (e.g., life-limiting conditions);
  • – progressive conditions without curative treatment options, where treatment is exclusively palliative after diagnosis and may extend over many years; and
  • – irreversible but nonprogressive conditions entailing complex health care needs leading to complications and the likelihood of premature death” (NHPCO, 2009, pp. 5-6).
• Children’s Hospice International issued the Children’s Program of All-Inclusive Coordinated Care for Children and Their Families (ChiPACC) Standards of Care and Practice Guidelines in September 2005. It covers 16 care components, including access to care, ethics, care teams, assessment processes, and bereavement services (Children’s Hospice International, 2005).

• The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End-of-Life, Second Edition, released in 2013, includes guidelines on decision making about life-sustaining treatment for the continuum of pediatric populations, including nonviable and viable neonates, young children, older children, adolescents, and mature and emancipated minors (Hastings Center, 2013).
• In its Report of the Children & Adolescents Task Force of the Ad Hoc Committee on End-of-Life Issues, the American Psychological Association (APA) published information about the role of psychologists in providing psychosocial care and bereavement services to children near the end of life and their families. The report also covers issues related to research, education and training, and policy with respect to care for this population (APA, 2005).
• In 2010, the Association of Pediatric Hematology/Oncology Nurses, in partnership with the Children’s Oncology Group Nursing Discipline, published Pediatric Oncology Palliative and End-of-life Care Resource, which provides information about palliative care to nurses caring for critically and terminally ill children with cancer (Ethier et al., 2010). It contains information on pain and symptom management, management of psychosocial issues, bereavement and grief, and other topics.
• The National Cancer Institute, through its Physician Data Query (PDQ^®) database, has developed summaries on pediatric supportive care for both patients (NCI, 2013) and health professionals (NCI, 2014).
• From 2005 to 2010, Hospice of Michigan implemented its Pediatric Early Care (PEC) program, which is for families of children from birth to 21. PEC assists patients and families from the time of diagnosis, providing support in palliative care education; grief and loss; sibling support; memory-making activities; patient advocacy; insurance assistance; community resource access; and integration with service providers, medical staff, and those at other social and community locations, including schools, workplaces, and places of worship (Hospice of Michigan, undated).
• While not specific to pediatric populations, NQF put forth preferred practices for end-of-life care and bereavement care for all patients with serious and complex illness and their families (NQF, 2006).
• A number of children’s hospitals, including St. Jude Children’s Research Hospital and Boston Children’s Hospital, have implemented institution-specific guidelines and procedures relating to the initiation of palliative care (Baker et al., 2008).

2003 Recommendation 2: Children’s hospitals, hospices, home health agencies, and other organizations that care for seriously ill or injured children should collaborate to assign specific responsibilities for implementing clinical and administrative protocols and procedures for palliative, end-of-life, and bereavement care. In addition to supporting competent clinical services, protocols should promote the coordination and continuity of care and the timely flow of information among caregivers and within and among care sites including hospitals, family homes, residential care facilities, and injury scenes.

• In April 2006, Massachusetts’ health care reform legislation resulted in the establishment of the statewide Pediatric Palliative Care Network (PPCN) program, administered by the Massachusetts Department of Public Health (Massachusetts Department of Public Health, 2014). In 2010, PPCN involved 11 hospice programs that provided services to 227 children with life-limiting illnesses. A 2011 assessment of the program found that implementing this model successfully is “highly feasible at relatively low cost” (Bona et al., 2011, p. 1217). In contrast with public benefit programs, such as Medicaid and CHIP, eligibility is not based on a family’s income level, insurance type, or insured status. There is no life expectancy requirement for participation in the program, which provides services for pain and symptom management; case management; counseling and psychosocial support; respite care; complementary therapies; spiritual care; and bereavement services for family, caregivers, siblings, and others.
• NHPCO has developed a number of tools to support hospice and palliative medicine health care teams, although these resources do not include content specific to pediatric populations (NHPCO, undated-c). Topics include
  • – interdisciplinary team competency;
  • – cultural competency in grief and loss;
  • – delivering bad news: helpful guidance that also helps the patient; and
  • – talking about treatment options and palliative care.

2003 Recommendation 3: Children’s hospitals, hospices with established pediatric programs, and other institutions that care for children with fatal or potentially fatal medical conditions should work with professional societies, state agencies, and other organizations to develop regional information programs and other resources to assist clinicians and families in local and outlying communities and rural areas.

• In 2007, NHPCO conducted its second member Survey on Pediatric Services, receiving 378 responses. Overall, 78 percent of responding hospices reported that they served pediatric patients, and 37 percent had a formal pediatric program in place. Of those without a dedicated pediatric team, 22 percent had specialized staff providing only pediatric services (Friebert, 2009).
• Two of the Center to Advance Palliative Care’s (CAPC’s) eight Palliative Care Leadership Centers (PCLCs) are based in children’s hospitals and provide health professionals with close, hands-on experiences, as well as a 12-month mentoring follow-up to guide them through the challenges of program growth and sustainability. The PCLC pediatrics training is relevant to pediatric palliative care programs at every stage of development, whether involving teams from children’s hospitals or pediatric programs within a general hospital, and tailored to the specific operational needs of each program (CAPC, 2014).
• Pilot programs and local/regional palliative care networks have been established in some rural communities.
  • – The Rural Palliative Care Network at Vermont Children’s Hospital expands Fletcher Allen Health Care’s Palliative Medicine Service and allows the hospital’s clinicians to share their palliative care expertise with the region’s clinicians and community hospital staff. The network’s services include telemedicine consultations, a palliative medicine hotline, a palliative medicine mentorship program, site visits, and weekly case conferences (Fletcher Allen Health Care, 2014).
  • – The Massachusetts PPCN, mentioned above, is a statewide program with the participation of hospice and palliative care programs in metropolitan and rural areas (Bona et al., 2011; Massachusetts Department of Public Health, 2014).

2003 Recommendation 4: Children’s hospitals, hospices, and other institutions that care for seriously ill or injured children should work with physicians, parents, child patients, psychologists, and other relevant experts to create policies and procedures for involving children in discussions and decisions about their medical condition and its treatment. These policies and procedures—and their application—should be sensitive to children’s intellectual and emotional maturity and preferences and to families’ cultural backgrounds and values.

• One of the preferred practices outlined in NQF’s A National Framework and Preferred Practices for Palliative and Hospice Care Quality is “Decisionmaking of Minors,” which states: “For

• minors with decisionmaking capacity, document the child’s views and preferences for medical care, including asset for treatment, and give them appropriate weight in decisionmaking. Make appropriate staff members available to both the child and the adult decisionmaker for consultation and intervention when the child’s wishes differ from those of the adult decisionmaker” (NQF, 2006, p. 45)
• Advance directive documents specifically geared to pediatric patients have been developed. For example, the creators of the Five Wishes living will (18 million of which are in circulation in the United States) have developed My Wishes, “a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill,” and Voicing My Choices: A Planning Guide for Adolescents & Young Adults, which “helps young people living with a serious illness to communicate their preferences to friends, family and caregivers” (Aging with Dignity, 2014; Lyon et al., 2013; Wiener et al., 2008, 2012).
• One recent study found that the implementation of advance directives for pediatric patients entails several particular barriers. For example, emergency department personnel are uncomfortable honoring them, schools may not accept them, and parents seeking to honor their children’s wishes encounter negative reactions from others (Lotz et al., 2013).

2003 Recommendation 5: Children’s hospitals and other hospitals that care for children who die should work with hospices and other relevant community organizations to develop and implement protocols and procedures [around bereavement services].

• A 2011 study found that 24 of 28 surveyed pediatric palliative care programs (86 percent) reported having a staff chaplain on their clinical team, although their roles varied widely (Fitchett et al., 2011).
• While not specific to pediatric populations, NQF recommends that all palliative care and hospice models include bereavement support for at least 13 months after the patient’s death. This framework suggests preferred practices for the development and implementation of grief and bereavement care plans (NQF, 2006).

2003 Recommendation 6: Public and private insurers should restructure hospice benefits for children to (a) add hospice care to the services required by Congress in Medicaid and other public insurance programs for children and to the services covered for children under private health plans; (b)

eliminate eligibility restrictions related to life expectancy, substitute criteria based on a child’s diagnosis and severity of illness, and drop rules requiring children to forgo curative or life-prolonging care (possibly in a case management framework); and (c) include outlier payments for exceptionally costly hospice patients. (See bullets under Recommendation 7.)

2003 Recommendation 7: In addition to modifying hospice benefits, Medicaid and private insurers should modify policies restricting benefits for other palliative services related to a child’s life-threatening medical condition.

• As noted earlier, the ACA removed the prohibition on receiving concurrent treatment (hospice and curative services) for children under Medicaid and CHIP. Children may be enrolled simultaneously in programs that provide supplemental services not covered by Medicaid and CHIP, such as specialized home health care, case management, respite care, and family support services (NHPCO, 2010).¹³
• A number of states have obtained waivers from CMS rules to establish or augment pediatric palliative services. In 2005, Florida became the first state to use a managed care waiver program to offer concurrent hospice and curative treatment for qualified children (Florida Agency for Health Care Administration, 2009, 2013). California, Colorado, and North Dakota use supplemental services waivers; New York and North Carolina use waivers for medically fragile children. A different model has been developed in Washington State under its Early and Periodic Screening, Diagnosis, and Treatment program (NHPCO, 2010, 2012b).
• State Medicaid programs must cover hospice services for children even if they do not include hospice services for adults (CMS, 2010).

Remaining gaps:

• To qualify for concurrent care, the child must be within the last 6 months of life if the disease runs its normal course, as certified by a physician (NHPCO, 2010).
• Under this benefit, children are limited to a state’s existing Medicaid hospice and other services (NHPCO, 2010).

2003 Recommendation 8: Federal and state Medicaid agencies, pediatric organizations, and private insurers should cooperate to (1) define diagnosis

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¹³Patient Protection and Affordable Care Act of 2010, Public Law 111-148, 111th Cong., 2d Sess. (January 5, 2010), § 2302 Concurrent Care for Children.

and, as appropriate, severity criteria for eligibility for expanded benefits for palliative, hospice, and bereavement services; (2) examine the appropriateness for reimbursing pediatric palliative and end-of-life care of diagnostic, procedure, and other classification systems that were developed for reimbursement of adult services; and (3) develop guidance for practitioners and administrative staff about accurate, consistent coding and documenting of palliative, end-of-life, and bereavement services.

• As previously mentioned, NHPCO developed Standards of Practice for Pediatric Palliative Care and Hospice (NHPCO, 2009), which identifies four diagnostic categories of patients, listed above, who should be offered palliative care and/or hospice services.

2003 Recommendation 9: Medical, nursing, and other health professions schools or programs should collaborate with professional societies to improve the care provided to seriously ill and injured children by creating and testing curricula and experiences [for health care professionals].

• At Children’s Hospital Boston, physicians participated with nurses, social workers, psychologists, and chaplains involved in pediatric critical care in a day-long interprofessional communication program, the Program to Enhance Relational and Communication Skills, created by the Institute for Professionalism and Ethical Practice (Meyer et al., 2009).

2003 Recommendation 10: To provide instruction and experiences appropriate for all health care professionals who care for children, experts in general and specialty fields of pediatric health care and education should collaborate with experts in adult and pediatric palliative care and education to develop and implement [model curricula, residency program requirements, pediatric palliative care fellowships, introductory and advanced continuing education programs, and strategies to evaluate techniques and tools for educating health professionals in palliative care, end-of-life, and bereavement care].

• EPEC-Pediatrics has 23 core and two elective topics, taught through 20 distance learning modules and six 1-day, in-person conference sessions (EPEC, 2013). Since 2012, physicians and nurse practitioners have participated in “Become an EPEC-Pediatrics Trainer” workshops.¹⁴

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¹⁴Personal communication, S. Friedrichsdorf, Children’s Hospitals and Clinics of Minnesota, February 6, 2014.

• ELNEC developed an ELNEC-Pediatric Palliative Care curriculum in 2003, updated in 2009 with content about perinatal and neonatal issues (AACN, 2014b).
• As noted earlier, in September 2006, the American Board of Medical Specialties approved the creation of hospice and palliative medicine as a subspecialty of 10 participating boards, which include pediatrics (American Academy of Hospice and Palliative Medicine, undated-e). Between 2008 and 2012, 210 pediatricians became board certified in hospice and palliative medicine, accounting for 3 percent of all board-certified physicians in this subspecialty (ABP, 2013).
• NBCHPN^® administers the following hospice and palliative pediatric nurse examinations accredited by the American Board of Nursing Specialties through 2015:
  • – Advanced Certified Hospice and Palliative Nurse,
  • – Certified Hospice and Palliative Nurse,
  • – Certified Hospice and Palliative Licensed Nurse,
  • – Certified Hospice and Palliative Nursing Assistant,
  • – Certified Hospice and Palliative Care Administrator,
  • – Nurse Certified in Perinatal Loss Care, and
  • – Certified Hospice and Palliative Pediatric Nurse (NBCHPN^®, 2014).
• The Accreditation Council for Graduate Medical Education requires that pediatric training programs include formal instruction related to the “impact of chronic diseases, terminal conditions, and death on patients and their families” (ACGME, undated).
• Other curricula and education programs have been developed by organizations including the following:
  • – Children’s International Project on Palliative/Hospice Services (ChiPPS)—developed a core curriculum for varied populations of health professionals that can be used to design, develop, and implement individualized education and training programs (NHPCO, undated-d).
  • – Initiative for Pediatric Palliative Care (IPPC)—developed curriculum materials and conducted educational retreats throughout the United States and Canada for interdisciplinary teams, including clinicians from pediatric and neonatal intensive care units and parents of children with life-threatening conditions (Solomon et al., 2010).

Remaining gap:

• There is still a clear need for additional pediatric palliative care preparation during residency training. While no formal, standardized training of medical students and residents currently exists, a few programs and institutions are piloting or implementing such programs (Carter and Swan, 2012; Schiffman et al., 2008).

2003 Recommendation 11: The National Center for Health Statistics, the National Institutes of Health, and other relevant public and private organizations, including philanthropic organizations, should collaborate to improve the collection of descriptive data—epidemiological, clinical, organizational, and financial—to guide the provision, funding, and evaluation of palliative, end-of-life, and bereavement care for children and families.

• In 2009, NHPCO published NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America, which compiles data from various articles and reports (Friebert, 2009).
• NHPCO has been collecting data using the voluntary National Data Set (NDS) since 1999. The NDS provides a platform for data-driven evaluation of the performance of the hospice industry. While this tool is not specific to pediatric populations, it does collect information relevant to hospices that serve pediatric populations either exclusively or alongside adult hospice patients. NHPCO has added an annual national Palliative Care Supplement to the NDS (NHPCO, 2013). In 2007, NHPCO conducted a Survey on Pediatric Services and received 378 responses from member hospice providers offering information about their pediatric patient population and services (Friebert, 2009).

2003 Recommendation 12: Units of the National Institutes of Health and other organizations that fund pediatric oncology, neonatal, and similar clinical and research centers or networks should define priorities for research in pediatric palliative, end-of-life, and bereavement care. Research should focus on infants, children, adolescents, and their families, including siblings, and should cover care from the time of diagnosis through death and bereavement. Priorities for research include but are not limited to the effectiveness of (a) clinical interventions, including symptom management; (b) methods for improving communication and decision making; (c) innovative arrangements for delivering, coordinating, and evaluating care, including interdisciplinary care teams and quality improvement strategies; and (d) different approaches to bereavement care.

• Recent NIH grant programs supporting research on pediatric end-of-life care include
  • – Advancing Palliative Care Research for Children Facing Life-Limiting Conditions, a $1.25 million NINR-sponsored program supporting biobehavioral research aimed at improving quality of life, including bereavement support, for children (NIH, 2010); and
  • – Improving Care for Dying Children and Their Families (2004-2007), a program under the auspices of several institutes designed to support research that will improve the quality of life for children who are approaching the end of life; the quality of the dying process; and bereavement following the child’s death among family members, friends, and care providers (NIH, 2004).
• NINR’s Palliative Care: Conversations Matter^® campaign focuses on improving communication about pediatric palliative care among patients, families, and health care providers (NINR, 2013b).
• NPCRC funds grants in the following areas of interest: pain and symptom management, communication, and models of health care delivery (NPCRC, undated-a). It offers funds through four different funding mechanisms: pilot and exploratory project support grants, junior faculty career development awards, infrastructure support for collaborative study, and research design/statistical support grants (NPCRC, undated-b).
  • – Funding to date has supported projects aimed at elucidating, among other topics, communication and decision making, symptom burden, and quality of life among pediatric patient populations (NPCRC, 2010).
  • – In 2013, NPCRC established the Lord Pediatric Palliative Care Career Development Awards with the support of the Lord Foundation (NPCRC, 2013).

Remaining gaps:

• The NINR-published review Building Momentum: The Science of End-of-Life and Palliative Care: A Review of Research Trends and Funding, 1997-2010 reports that research involving pediatric populations increased between 1997 and 2010, but still accounted for a small proportion (less than 10 percent) of all end-of-life and palliative care research publications (NINR, 2013a).
  • – Research among solely children (defined as newborn to age 17) increased from 2.5 percent in 2003 to 6.3 percent in 2010.

• • – Research among combined populations of children and adults increased from 3.4 percent in 2003 to 5.4 percent in 2010.
• The present report identifies the need for further research among pediatric populations in a number of topic areas, including
  • – approaches to symptom management and bereavement support;
  • – the impact of palliative care on clinical outcomes and patient and family experience;
  • – involvement of children in end-of-life decision making, approaches to decision support and communication, and the development of guidelines for pediatric and adolescent advance care planning;
  • – care received in various settings, including outpatient settings, hospices, and emergency departments and through home health agencies; and
  • – staffing, management, and financing of hospital-based pediatric palliative care and community-based pediatric hospice services.

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