Pediatric Palliative Care: A Specialty Comes of Age
For a child with cancer, palliative care can provide much-needed relief from stress and symptoms—for the patient and their family alike. Palliative care is given alongside cancer treatment, and is not synonymous with “end-of-life” care. In fact, anyone with a serious illness can benefit from palliative care, no matter their long-term outlook.
Because of its importance for children with cancer, we are honored to publish this In-Depth Insight on the rise and future of pediatric palliative care in the U.S., written by Sarah Friebert, MD, Director of the Haslinger Family Pediatric Palliative Care Division at Akron Children’s Hospital, and Professor of Pediatrics at Northeast Ohio Medical University. We hope this piece will speak to anyone interested in improving the state of pediatric palliative care and spark discussion about the future of this field.
—George Lundberg, MD, Editor in Chief
Palliative care for children, or pediatric palliative care (PPC), is truly a specialty that has emerged and come of age during my professional career. It began as an outgrowth of the modern adult hospice movement. Though there have been hospital and religious hospices for centuries, the opening of St. Christopher’s Hospice in England in 1967 marked the beginning of what we know to be hospice care today. By now the stuff of legends, Dame Cecily Saunders, who was a one-woman palliative care team in and of herself (nurse, social worker, and physician), brought this concept to the modern world through St. Christopher’s.
The spread of hospice to the U.S. is largely credited to Florence Wald, a nurse who studied under Dame Saunders and opened the Connecticut Hospice in 1974. Many major landmarks in the development of the field have occurred since then. Among the top was the creation of the Medicare Hospice Benefit in 1982, which created a funding stream for end-of-life care.
Palliative care (PC) began to emerge on the scene in 1975, when Balfour Mount coined the term and founded the first comprehensive PC program at Royal Victoria Hospital in Montreal. In 1983 the Joint Commission on the Accreditation of Healthcare Organizations (now The Joint Commission; TJC) initiated hospice accreditation, and in 1987 the first American academic hospital PC program came to be at the Cleveland Clinic Foundation under the leadership of Dr. Declan Walsh.
The formal stature of the field has been enhanced by official board certification: in 2006, the American Board of Medical Specialties (ABMS) approved subspecialty status; in 2008 the first ABMS-recognized hospice and palliative medicine board certification exam was offered, and the Accreditation Council for Graduate Medical Education approved requirements for fellowship training.
The Rise of Pediatric Palliative Care
So what about PPC? Although a definitive chronology is difficult to outline, the subspecialty of pediatric hospice and PC arose through a combination of factors: the growing strength of the adult movement leading to a charge to offer similar care to children and young adults; innovative health care workers recognizing gaps and needs; people (lay and professional) who were personally affected, becoming determined to make change and/or create legacy; changing attitudes about health care and health priorities in general; the coming-of-age of a more informed and proactive demographic of people invested in creating personalized care; recognition of the limitations of technology and modern medicine in meeting the needs of the seriously ill, including children; the escalating amount of care and spending for children and adults with medical complexity and during the last years of life; the growth of autonomy and its primacy in the U.S.; an increased focus on holistic and complementary care modalities; and changes in relationships between health care providers and patients.
All of these factors, and countless more, started the flywheel of change moving, and it has since taken off.
In terms of hospice/PC programs and facilities for infants, children, and young adults, children’s hospice houses in England were the first on the scene, and were usually named after particular children (such as Helen House, founded in 1982). Edmarc in the U.S. was the first program dedicated to PPC, and in 1985, St. Mary’s Hospital in New York opened a dedicated inpatient PPC service (though it closed in the 1990s).
Early on, PPC struggled with care that can be described as being an “inch wide and a mile deep”; programs and clinicians often fought for credibility and acceptance, as well as access to patients. PC was equated with hospice, which connoted end of life, and stigma abounded that precluded widespread acceptance of this “new” care paradigm.
Provision of hospice and PC for infants came on the scene in the 1980s, with PC initiatives beginning in neonatal intensive care units and the development of early guidelines. Cancer programs were also early adopters, and many hospital-based programs started in oncology units. The AIDS epidemic furthered the cause, in adult hospice and PC as well, and spurred initial national and international mandates for improved holistic care that addressed physical, psychosocial, emotional, and spiritual care for patients at earlier and all stages of illness (building upon the core values of hospice care).
Giant leaps forward in PPC occurred with the 2000 publication of Joanne Wolfe and colleagues’ study about unrecognized and untreated symptoms in children dying of cancer. The American Academy of Pediatrics (AAP) published its first policy statement on PPC in 2000 (updated in 2013). On the heels of Wolfe’s landmark study, the Institute of Medicine’s (IOM) 2003 comprehensive report, When Children Die, launched a call to action not only in clinical care but in research and program development.
Currently, many organizations and individuals have issued national and international mandates and calls to arms for PC, including PPC. A partial list includes the AAP, IOM, TJC, the American Hospital Association, the World Health Organization, the United Nations Convention on the Rights of the Child, the International Children’s Palliative Care Network, and medical subspecialty societies such as the American Society of Pediatric Hematology/Oncology, the American Society of Clinical Oncology, the American Cancer Society, the American Heart Association, the American Stroke Association, the Society for Critical Care Medicine, and others. The major national PC and hospice organizations all have pediatric special interest groups, agendas and/or representation to enhance the pediatric voice (see http://www.nhpco.org; www.aahpm.org; www.capc.org; www.hpna.org; www.swhpn.org; and others). The U.S. News and World Report annual ranking of top children’s hospitals even includes PC as a key metric.
Research opportunities, collaboration, and funding have burgeoned, both because of enhanced pediatric-focused funding within existing tracks and organizations, including the National Palliative Care Research Center and the Palliative Care Research Network, as well as establishment of pediatric-specific research collaborations, such as the Pediatric Palliative Care Research Network. Training opportunities have also increased. For example, 39 pediatric fellowship programs for physicians, some with more than one position, are listed at www.aahpm.org with more coming online regularly (a new one was added in the past month). A growing number of certificate and master’s programs are also available, as is interdisciplinary fellowship training.
Changes in health care overall have helped to move PC upstream and improve access. Current realities, as well as formal and informal initiatives—e.g., the growth of subspecialty care, medical home and medical neighborhood initiatives, Accountable Care Organizations, value-based care, care across the continuum, care coordination, and the financial challenges of our overburdened and monstrously expensive current system—have all expanded the opportunities for the type of proactive focus on anticipatory guidance surrounding serious illness that PC programs are designed to provide.
The tide has turned. Messaging around the value of early integration and of prognostic uncertainty as a trigger for PPC has also facilitated upstream referral. And while this has been the goal all along, it necessitates the creation of program models that are structured and funded to follow children and families for the long term, across multiple locations of care, through many different developmental and illness-triggered changes in trajectory.
Expanding PPC programs to include children with serious illness has meant an increase in the number of program models that have arisen to meet needs for longer periods of time across multiple transitions. A mirrored hospice benefit in Medicaid (based on Medicare), the payer of greatest impact for children, as well as the passage of the Affordable Care Act in 2010 containing the Concurrent Care provision, has provided at least some reimbursement, primarily for traditionally medically-focused aspects of care. Concurrent Care allows dual payment for hospice and cure-directed therapies for Medicaid recipients under 21 years of age who meet hospice enrollment criteria; this has eliminated the need for parents to choose between hospice and continued disease-based treatment. Creation of reimbursement codes for advanced care planning has also helped to incentivize these important conversations, though widespread adoption and reimbursement for these codes is not yet happening, especially in the pediatric world.
Expansion of Care Brings New Challenges
All of this positive forward movement has been exciting, but it also creates challenges that we must work to overcome.
Initially, growth of PPC programs was largely determined by centricity of need (tertiary/quaternary children’s hospitals) and funding/reimbursement streams (consultation, medical-based care). However, many models are now necessarily home- and community-based, as this is where families would prefer to be with adequate support and as we’ve been challenged to create soft landings/networks of care to embrace all of domains of suffering. Nevertheless, funding/reimbursement streams for these care models are piecemeal at best, with high geographic and state-to-state variability.
Two of the most salient needs for families to succeed at home—dependable, high-quality in-home pediatric nursing care and respite care for families—are severely lacking in most areas. Free-standing pediatric hospice/PC facilities, in the vein of the U.K.’s Children’s Hospice Houses, have also begun to spring up as an alternative to hospital or in-home care for children toward the end of life or in need of respite care. Funding challenges abound for this model, however, and the true need and impact are unknown. At best, however, free-standing pediatric hospice facilities have limited geographic and volume capacity.
Our current reality is one of care that is becoming more “an inch deep and a mile wide.” Opening the gates for PPC integration creates workforce issues; with limited training sites and sustainable funding for programs, there are not sufficient numbers of PPC clinicians to meet the growing need. Success in establishing PPC as a recognized subspecialty has also resulted in confusion and overlap with other services and subspecialties, especially those designed to provide care coordination for children with medical complexity.
For instance, some confusion has stemmed from the growth of the “primary PC” movement—an important development and a natural outgrowth of the pendulum swing from no PC to “PC for all serious conditions.” Primary PC refers to training and empowering clinicians of all disciplines to offer fundamental, core concepts of palliative care that are central to any clinical encounter, regardless of specialty; PC specialty care is then reserved for more complex or higher-stakes situations or needs.
Challenges also arise from the fact that PPC itself is not one entity. The term generally subsumes care across a wide range of ages, from prenatal PC, largely focused on parents expecting a child, to adolescents and young adults, particularly those who are living into adulthood with childhood conditions. In some cases, PPC is delivered in organizations where adult patients continue to be treated and/or hospitalized either within the pediatric institution or as part of the larger system. Much of the time, however, PPC patients and families face transition to adult healthcare systems; often this is a bumpy road and much work remains to be done to establish seamless hand-offs to providers and systems previously (or currently) unprepared to care for this population.
Funding remains a significant barrier. Despite the ACA and the Medicaid Hospice benefit, care for children with private insurance, “children” above the age of 21 with ongoing chronic conditions of childhood, and those who are PC- but not hospice-appropriate is patchy at best. PPC is an interdisciplinary team sport, yet reimbursement for “non-medical” members of the team is not covered in most states. Medicaid rules and regulations are highly variable among states and even within states with changes in state government.
Waiver and other federal and state relief programs, while lifelines for families, sometimes complicate provision of specialty or bundled services and are not always available for all those who need them. Most programs rely heavily on philanthropy or umbrella support from other areas of institutions (hospitals, hospices or home care companies) that turn a profit; this creates uncertainty in ongoing sustainability and potential competition for funding in which institutions, organizations and communities are robbing Peter to pay Paul.
Other access-limiting challenges abound. Despite all of the progress that has been made, a minority of children who die are actually served by high-quality PPC and hospice programs. (The last formal measure of access indicated 10 to 15%; this has likely improved but the exact percentage is unknown.) While the number of children who die annually in the U.S. is dropping every year (currently around 43,000, of whom slightly more than half are infants), the population with medical complexity/serious illness is estimated to be at least 1 million on any given day and growing. Further, though this number still represents a minority of children in this country, their healthcare expenditures are disproportionately large. The current percentage of this population receiving PC is also unknown, but estimated to be grossly insufficient.
Reasons for this disparity are numerous and include barriers to appropriate patient identification, insufficient education and training of teams and professional caregivers, reimbursement and financial challenges, and lack of evidence-based guidelines for treatment/interventions as well as service delivery, to name just a few. Progress has been made in all of these areas over the past few decades, but much work remains to be done to ensure that all children with PC needs and their families have access to high-quality PPC.
In addition to the myriad barriers, standardization of quality and outcomes measurement is improving but still inadequate, and disparities in care are, in some instances, widening, particularly in cultural/ethnic realms. Improved diagnostic and therapeutic capabilities, including genomic medicine, have increased uncertainty, as many formerly “terminal” conditions have become chronic illnesses.
Definitional confusion persists from basic concepts—hospice and PC distinctions are still not understood by many—to more epidemiologic considerations that have implications for every aspect of field development, including research. As an example of the latter, many children who qualify for PC may variously be described as having special health care needs, medical complexity, complex medical conditions, complex/chronic conditions, and/or a number of other terms.
Further, even the conditions that “qualify” for PC services are differently defined. Terms such as “terminal,” “life-shortening,” “life-limiting,” “life-threatening,” and “serious illness” are all in play. The most recent edition of the National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care (4th edition, published in 2018), chooses the term “serious illness” and defines this as “a health condition that carries a high risk of mortality and either negatively impacts a person’s daily function or quality of life or excessively strains their caregiver.” This definition, while helpful, is broad enough to encompass most children who are admitted to acute care institutions in this day and age (outside of straightforward, self-limited conditions such as bronchiolitis or appendicitis). “High risk of mortality” is also not specific, potentially opening PC eligibility to thousands of children with illnesses that have not historically been part of the demographic served by PPC programs (e.g. severe, uncontrolled asthma).
Thankfully, most children’s hospitals now have PPC programs, but the depth and breadth of these programs vary widely, largely due to funding challenges. Yet, many children in the U.S. are geographically far from children’s hospitals or tertiary/quaternary care institutions, and the availability of/access to high-quality PPC out in the community is even more problematic. Efforts such as the Children’s Project on Palliative/Hospice Services (ChiPPS), the Center to Advance Palliative Care’s toolkit for community-based PC, and the NCP guidelines are attempting to close these gaps.
Improving Pediatric Palliative Care
So what can be done to improve the state of PPC in the U.S.? How can we get to the point where we are offering high-quality PPC as a right to the right patient at the right time to the right depth for the right length of time in the right places across the right breadth of options by the right people to produce the right outcomes?
In addition to addressing the barriers outlined above in systematic and embedded ways, a few key strategies and initiatives can likely result in large-scale changes in the coming years:
- It would be helpful if the healthcare community, particularly in PPC, could work together to still the multiple pendulums that are wont to swing in the U.S. and drive U.S. from one extreme to the other. In the last century, we have seen a seminal change in location of care and death from the home to the hospital, and now the pendulum is swinging back to death at home as a quality outcome—or at least as an antidote to “mortality penalties” for adverse outcomes in the hospital. It is necessary to work toward the middle ground to allow children to die wherever they and their families are most comfortable (usually the home with adequate support, but often the hospital as a second home) and streamline funding and programmatic structures to enable this to happen as seamlessly as possible.
- A second pendulum involves a change from care provided in the community by the community (early “interdisciplinary team players”) to one that evolved into primacy between a doctor and a patient, and one that increasingly involved the hospital/intensive care unit/acute healthcare system. Now we see movement back toward holistic team-based care within the hospital, beginning to move back out to care teams in the community, enjoining community aid or health workers and laypeople to help form the continuum. The concept of the medical neighborhood is evolving to describe the widening circles of influence on health. Medical neighborhoods are built on a set of shared principles and expectations between the medical home—centered around the patient/family and a primary care provider—and clinical/community specialists in which all parties are committed to developing and delivering care plans in a coordinated fashion. PC definitions can sound very much the same, and PC teams have the potential to serve as facilitators for patients with serious illness.
- Third, we’ve seen a wild swing from complete paternalism (doctor knows best) to a U.S. phenomenon dubbed “radical autonomy” that parallels our fast-moving, me-centered society. In healthcare, encounters that previously featured dictates from medical personnel to patients have shifted to ones in which options are presented and families are asked how they wish to proceed, or, more simply, to responding reactively to what parents and families demand. Moving toward a shared or partnered goal-concordant decision making approach that is deliberative (led by expert opinion and recommendation) allows patients and families to have self-determination while minimizing decisional regret. A concrete example of this occurs in the current common practice of asking families if they would like a PC consult; other than psychiatry, PC is the only discipline in which families are often asked to consent prior to service initiation. While forcing families to accept treatment or services they do not want is not the goal, asking families to consent to something they may not fully understand or appreciate may unfairly shortchange them. In situations in which PC has value to add, consultation should become standard of practice, just as for other medical disciplines in which subspecialty or expert-level guidance enhances care.
- PPC must be centralized into the care paradigm of children whose life trajectory will not be typical. The move in U.S. healthcare toward medical neighborhoods, value-based care, care across the continuum, and the management of the health of populations dovetails perfectly with the ideals of PPC and the likely outcomes if PPC is standardized, funded and operationalized. PPC experts must be at the table of conversations architecting the future of our healthcare system in the U.S. as major stakeholders so that care paradigms are created and implemented with PPC at the core instead of on the fringe. In other words, PC must penetrate organized medicine and become part of mainstream care.
- Full access will necessitate the full-scale development of robust interdisciplinary PPC teams available in multiple locations and settings. Teams simply must be resourced to be able to get in early (at diagnosis in many cases) and stay for the long haul, across settings, different developmental stages, and changing trajectories. Access depends on flexible, nimble care models that meet patients and families where they are—where they are physically located as well as where they are emotionally, culturally, spiritually, and in their decision-making processes. In addition to fragmentation of care, lack of respite care is the most salient complaint from families themselves. Especially as children survive longer and longer with chronic conditions, 24/7/365 care of children for decades is exhausting. Data on caregiver impacts (financial, emotional, health-related) and the downstream effect on society as a whole is beginning to be collected in the adult world; though exact figures are not available, it’s not hard to imagine that all of these impacts are likely to be significantly increased in parents/caregivers of children with PC needs if for no other reason than the longer duration of their illnesses.
- Research and quality outcomes must continue to be funded, conceptualized, developed, carried out, scaled, and spread in more nimble and quicker ways. Adherence to evidence-based standards, guidelines and/or recommendations must also be assessed and monitored; in order to make this tenable in PPC, measures must be relevant for the pediatric population, created with input from the primary stakeholders, including patients and families themselves.
- To combat workforce issues, training pathways and flexible, creative mechanisms to widen the pipeline for career development in PC must be operationalized and spread. In addition to beginning core education in PC earlier in inter-professional training, mid-career pathways must be expanded. Alternate routes to board certification must not sacrifice quality but should instead be crafted to incentivize experts in all interdisciplinary fields to train and work in PPC.
- Education and training in primary PC, with careful and collaborative delineation of indications for expert/subspecialty consultation, must continue to be promulgated. PC can be further “institutionalized” and “normalized” by educating and training local champions in all venues where PPC can be offered and provided, so that the fear factor is reduced and PPC becomes standard of practice for high-quality healthcare systems. In addition, leadership capacity building and development is paramount to ensure that the field continues to mature.
- Staff care is also paramount. Investing in training and education is pointless if people are leaving the field or completing suicide. The terminology may vary—resilience, burnout prevention, caregiver nurturance, and preservation—but the focus should not: we need to attend to the same domains of suffering in ourselves and each other that we address in our service to families. As the AAP states in its 2013 revised policy statement on PPC: “Support of all health care professionals, including the PPC-PHC [Pediatric Hospice Care] team, is crucial to the well-being and continued ability of staff to meet the needs of families and children who have serious life-threatening or inevitably life-shortening conditions.”
- Further changes in and emphasis on accreditation and regulation are necessary to lift restrictions where appropriate and ensure oversight and accountability as the field grows. Here again the metrics need to reflect the real world of PPC and be informed by those who know it best.
- Of course, none of this is possible without money. In simple terms, robust, widespread PPC will not be sustainable without significant shifts in reimbursement and overhauls to our current healthcare funding streams. Sweeping changes in health policy to affect reimbursement and financing, enabling creative funding models that cover the care continuum, will be necessary to impact all of the barriers and needs outlined above. Creative sources of support, including private sector investment and public/private partnerships, should also be explored.
What else can move the needle? Organized, grassroots calls to action will likely be heard as loudly, if not more prominently, than voices from within the field. Public messaging and outreach to create a drumbeat of demand from PPC “customers” themselves will likely be more effective in pushing for large-scale change in the status quo. Family voices creating a buzz and demanding this type of care as part of how they make their choices—from employer insurance plans to location of care—may influence legislators and policymakers far faster than the tired voices of beleaguered care workers on the “inside” asking for more.
The PPC field itself also needs to organize to reduce redundancies, cover gaps, and enhance the strength of our voices. Fortunately, this is happening, through the support and spread of pediatric expertise within existing national efforts to improve PC. In addition, leaders in the field are currently meeting to explore ways to unite forces across disciplines to address all of the key pillars outlined above, in a centralized, streamlined fashion to improve access to high-quality PPC for all who need it.
In many ways, the PPC movement has followed the trajectory of the patient population we serve, and can be likened, loosely, to the Eriksonian stages of psychosocial development. From birth and initial total dependence on our parents (the adult PC world), we entered toddlerhood where we exerted our autonomy to establish our independence. Then we began to take initiative as programs, treatment paradigms, and training have been outlined and developed to reflect the differences in PPC from adult-focused PC. As our field has matured, a period of intense industry has followed in seeking to move from afterthought to a primary seat at the table in larger palliative and healthcare conversations. In the adolescence and young adulthood of the field, we are continuing to mold our identity and combat role confusion in the brave new world of value-based care and population health. Recognizing, perhaps, that we have more in common with our parents than we would have liked to believe as children, we are seeking ways to collaborate “across the aisle”; for larger policy and payment changes to occur, strength in numbers and cohesive vision are more likely to garner successful results that will benefit all persons with PC needs and their families, allowing the PC field as a whole to achieve generativity and integrity.
Yes, we can.