New National Quality Guidelines Keep Pace with Rapid Advances in Palliative Care
By Joe Rotella, MD MBA HMDC FAAHPM, and Martha L. Twaddle, MD HMDC FACP FAAHPM
Delivering better outcomes and experiences for people living with serious illness and their caregivers increasingly is recognized to be a key driver of healthcare value, making these exciting times for palliative care clinicians and advocates. We are witnessing widespread innovation in care delivery, quality measurement, and payment models to address the needs of special populations. Many of these initiatives cut across the traditional silos of diagnosis, medical specialty, and setting of care. Emerging technology plays a key role as applications for telehealth, patient-reported outcomes, predictive modeling, and quality benchmarking proliferate. As these experiments unfold, it is critical that we ensure they improve access to quality care for people living with serious illness, build on best evidence, and focus on what matters most to patients and those who love and care for them.
Fourth Edition Follow-Up
To guide these advances and provide a framework to support accountability for quality outcomes, on October 31, 2018, the National Coalition for Hospice and Palliative Care published the fourth edition of its Clinical Practice Guidelines for Quality Palliative Care. The fourth edition calls for standardizing the quality of palliative care and ensuring it is available to all people living with serious illness, regardless of their diagnosis, prognosis, age, or where they live or receive care. The guidelines are the work of the National Consensus Project for Quality Palliative Care which comprises 16 national organizations with extensive expertise in palliative care and hospice.
National Consensus Project Leadership Organizations
American Academy of Home Care Medicine
American Academy of Hospice and Palliative Medicine
American Health Care Association
American Medical Group Association
Association of Professional Chaplains
Center to Advance Palliative Care
HealthCare Chaplaincy Network
Hospice and Palliative Nurses Association
Long-Term Quality Alliance
National Association for Home Care and Hospice
National Hospice and Palliative Care Organization
National Palliative Care Research Center
National Pediatric Hospice and Palliative Care Collaborative National Quality Forum
Physician Assistants in Hospice and Palliative Medicine
Social Work Hospice and Palliative Care Network
The fourth edition is a major update to the guidelines, which were first published in 2004 and most recently revised in 2013. Historically, the guidelines have provided a foundation for quality improvement and accountability for specialty-level palliative care. Taking a bold new direction compared with previous editions, the fourth edition asserts that all healthcare professionals who care for the seriously ill—not just palliative care specialists—should integrate evidence- and consensus-based palliative practices into the services they provide to this population. The guidelines promote improved access to palliative care, which focuses on providing patients and their caregivers relief from the symptoms and stress of serious illness based on need, not prognosis, and can be provided concurrently with disease-focused treatment. This edition of the guidelines also is accompanied by a systematic review of the literature conducted by the RAND Evidence-Based Practice Center and an abundance of tools, resources, and real-world practice examples to help with implementation.
Both the guidelines and the systematic review were supported by a grant from the Gordon and Betty Moore Foundation, with additional funding for the systematic review from the Gary and Mary West Foundation, John A. Hartford Foundation, and Stupski Foundation. The new guidelines have been endorsed by more than 80 national organizations, including the American Heart Association/American Stroke Association, American Academy of Pediatrics, American Board of Internal Medicine, American Cancer Society, American College of Surgeons, and American Nurses Association, in addition to the 16 national leadership organizations that comprise the National Consensus Project.
The guidelines are organized according to the eight domains of palliative care established in earlier editions, and the fourth edition now includes new information and emphasis on
- a comprehensive assessment of each person living with serious illness, irrespective of prognosis, age, and setting of care
- the assessment of families’ and caregivers’ needs for support and education
- coordination of care, especially during transitions from one place of care to another
- culturally inclusive care, specifically that all healthcare professionals respect culture-related needs and preferences of people and their chosen families
- communication among all stakeholders, including the palliative care team, the person living with serious illness, the family, other healthcare professionals, and providers of community resources.
Domains of Palliative Care
*In earlier editions, this seventh domain was called “Care of the Patient at the End of Life.”
Laura Hanson, MD MPH FAAHPM, professor of medicine at the University of North Carolina and chair of AAHPM’s Quality and Research Strategic Coordinating Committee, is impressed with this edition’s new emphasis on comprehensive assessment. “This patient- and caregiver-centered perspective distinguishes palliative care from pain management or advance care planning visits,” she said. “Our ability to engage with persons with serious illness is predicated on understanding their experience in physical, social, and cultural dimensions.”
Meanwhile, the call for improved care coordination and communication among stakeholders resonates with Amy Davis, DO MS FACP FAAHPM, private palliative care practitioner and co-chair of the AAHPM Quality and Practice Standards Committee. “As care is being increasingly siloed—with SNFists, hospitalists, and community clinicians relegated to specific care settings—it’s even more important to have routine transdisciplinary communication,” she said. “This avoids burdening the patient and family with unnecessary, duplicative decision-making discussions and treatments and studies that aren’t consistent with their established goals of care.” In addition to encouraging providers at all levels to work together to meet patient and family needs, Davis noted that the guidelines highlight the benefits of specialized care for complex cases of any kind. “These new guidelines also reinforce the clear benefits of having access to specialty palliative care across the spectrum of care settings,” she said.
Research and Care Revolutions
We are in the midst of a revolution in quality measurement and accountability for the care and experiences of people living with serious illness, and these updated clinical practice guidelines can provide a framework to support national initiatives toward this aim. For example, according to Katherine Ast, MSW LCSW, director, quality & research for AAHPM, they can undergird a major new quality measure development project. “The emphasis on patient-centered care and communication in the new guidelines aligns well with the approach AAHPM and its partners, the National Coalition for Hospice and Palliative Care and the RAND Corporation, will take in their Medicare-funded project to develop new patient-reported outcome performance measures relevant to palliative care for use in the Medicare Quality Payment Program,” she said. “Research shows how important it is to patients that they feel heard and understood in order to align treatment with their goals.”
According to Davis, clinicians also can use the guidelines to identify opportunities to improve care in their own practices. “An added benefit of the updated guidelines is their ready adaptation into clinically meaningful quality improvement (QI) projects, which are more frequently being mandated by payers and certifying agencies,” Davis said. “QI activities based on evidence-based literature can not only directly benefit patients, but also enhance feelings of professional satisfaction among the team members involved.”
The guidelines are based on the best available evidence as well as expert consensus. The RAND Evidence-Based Practice Center systematically reviewed the literature to formally grade the evidence and identify gaps for future research. Findings suggest a need for more well-designed trials of commonly used interventions in palliative care across populations to bolster the evidence base in key areas, including
- early/integrated palliative care
- complementary and alternative therapies for symptom management (eg, acupuncture, massage, and meditation)
- life review/dignity therapy and other spiritual interventions
- advance care planning interventions.
In addition, Hanson sees research opportunities springing directly from the NCP’s move to represent a broader perspective. “The new guidelines are expansive in scope, and now extend to ‘primary’ palliative care delivered by clinicians without specialty training or experience,” she said. “We are really testing new ground—posing guidelines external to a traditional specialty structure that apply simply because of the nature of the illness. It will be challenging to deliver on that expanded vision, but it gives us a whole new framework for research and quality measurement.”
Our national healthcare system is engaged in a fundamental transformation from paying for volume to paying for value. In addition to creating the Medicare Quality Payment Program, which includes the Merit-Based Incentive Payment System (MIPS) and Alternative Payment Models (APMs), the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) established the Physician-Focused Payment Model Technical Advisory Committee (PTAC) to review proposals from professional organizations for alternative payment models and recommend them for testing by the Center for Medicare & Medicaid Innovation (CMMI). Proposals that were developed separately by AAHPM and the Coalition to Transform Advanced Care (C-TAC) were reviewed by PTAC in March 2018, and both were recommended for limited-scale testing with the highest priority. AAHPM and C-TAC subsequently made joint recommendations to CMMI on an integrated alternative payment model for serious illness. Phil Rodgers, MD FAAHPM, director of the palliative care program at the University of Michigan and chair of AAHPM’s APM Task Force, sees a big role for the new guidelines in the design of innovative service and payment delivery models. “We relied heavily on NCP guidelines in developing the Academy’s proposals for an alternative payment model for palliative care, Patient and Caregiver Support for Serious Illness (PACSSI),” he said. “The new elements of the fourth edition are even more relevant to the next generation of value-based payment models, especially the focus on both primary and specialty palliative care, applicability to patients at all stages of serious illness and in all care settings, and emphasis on care coordination and care transitions.”
Although the guidelines primarily take a patient- and family-centered approach focused on meeting these individuals’ holistic needs and honoring their values and goals, the fourth edition also addresses critical needs and success factors for palliative care teams and organizations. For example, the first domain, Structure and Processes of Care, includes guidelines for the education, training, and professional development of the palliative care team; continuous quality improvement; and program stability, sustainability, and growth. The guideline on emotional support to the interdisciplinary care team is especially important to Arif Kamal, MD MBA MHS FAAHPM, director for quality and outcomes for the Duke Cancer Institute and co-chair of AAHPM’s Quality Committee. “The emotional health, resilience, and burnout of our professional workforce is a major quality issue,” he said. “We are a discipline with one of the highest rates of burnout. But that’s not surprising. It’s like working around a waterfall all day long and expecting not to get wet. Our work is certainly personally and professionally rewarding, but walking the journey of serious illness with others without dedicated attention to our own emotional health is a recipe for a workforce shortage. This particular guideline explicitly makes our own emotional health a priority and is a major step toward building a workforce that can thrive in the face of the suffering we encounter all around us.” (See related article on pp. 4–5.)
During times of rapid change, it is critical that we keep our eye on what matters most. Innovations require us to think expansively, collaborate and communicate with new partners in care, and find new ways to meet the needs of the seriously ill and those they designate as family and caregivers. The interdisciplinary team expands in scope and capacity as we create new partnerships and collaborations. As these innovations flourish and we progress on the journey to transform health care, the new guidelines hold true to the essential elements that form the bedrock for quality palliative care while also supporting the exploration of new approaches to improving quality of life for our burgeoning population with serious illness.
Practice Example 1
A freestanding hospice identifies a need to provide community-based palliative care services. The hospice uses the National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care, 4th edition, to develop the program structure and processes to meet the needs of seriously ill people in their community who are not yet eligible for or do not wish to access hospice care.
Practice Example 2
A large multisite, multispecialty community pediatric practice cares for children with neurological disease, muscular dystrophy, and cystic fibrosis. Ongoing review of their quality metrics identifies that parent satisfaction has been decreasing, particularly related to symptom management for children who have been hospitalized and then discharged home. The practice looks to the NCP guidelines for how to improve support for families living with a seriously ill child.
Practice Example 3
A home-based primary care practice with a physician, advanced practice registered nurse, and medical assistant cares for elderly people who have multiple morbidities and functional impairment. The practice has demonstrated its value by helping people avoid nonbeneficial emergency department visits and hospital stays. The clinicians can see that many of their patients and families would benefit from an interdisciplinary approach to care, especially for the social and spiritual aspects of care, and look to the NCP guidelines for help.
Practice Example 4
One of the hospice medical directors at the freestanding hospice oversees the program. An advance practice registered nurse, registered nurse, social worker, and chaplain use comprehensive assessment to develop a care plan, which guides patient and family care. The team also uses NCP-suggested evidence-based tools that promote patient and family self-report and self-management. The electronic health record includes documentation tools to support healthcare team communication, trending of clinical information, and data extraction for continuous quality improvement. Clinical, operational, financial, and patient and family experience of care metrics are reviewed on a monthly, quarterly, and annual basis to promote program integrity and sustainability. The program demonstrates significant reductions in pain and dyspnea within 24 to 72 hours of initial consult, almost 100% completion of advance directives, appropriate use of Physician Orders for Life-Sustaining Treatment (POLST) medical orders using the Appropriate POLST Form Use Policy, significant reductions in utilization of the emergency room and hospitalizations, significant reductions in the total cost of care, and patient experience score ratings consistently ranked as “very satisfied.”
Practice Example 5
At the large multisite, multispecialty community pediatric practice, the practice invests in training several advanced practice professionals as “palliative care champions” to support patients with serious illness and to facilitate care coordination when those patients are hospitalized. The practice initiates a palliative care clinic 1 day per week at rotating sites attended by a consulting palliative medicine physician to collaborate with the palliative care champions. The quality improvement plan strengthens the practice's relationships with home care and hospice, with a goal of better coordination of care for patients.
Practice Example 6
At the home-based primary care practice, the practice meets with the local community hospice, which is working to establish its own palliative care program. The hospice needs a palliative care medical director and its advanced practice registered nurses need more training in caring for people with complex medical illnesses who are not hospice eligible. The two entities engage in joint staff education and create processes to identify which patients need access to the hospice’s social worker. The practice begins to systematically screen for spiritual distress using the FICA spiritual history tool and requests consultations from the hospice chaplain as indicated. The hospice personnel identify themselves as part of the primary care practice when visiting patients and families. The entities obtain legal consultation and establish contracts to support their collaboration, setting forth clear lines of communication and responsibilities and meeting regularly to review their patient outcomes.
Joe Rotella MD MBA HMDC FAAHPM, is the Chief Medical Officer of AAHPM. He has collaborated on many of AAHPM’s quality and policy initiatives and served on the Writing Committee for the NCP Guidelines, 4th edition.
Martha Twaddle, MD HMDC FACP FAAHPM, serves as the medical director for palliative medicine and supportive care at Northwestern Medicine–North Region and served on behalf of AAHPM as cochair for the National Consensus Project for Quality Palliative Care.
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