Entering the Mainstream

Entering the Mainstream:
Pediatric Palliative Care Comes of Age

By Leif Wellington Haase

From Hope Magazine 2012

In the 1980s, when her daughter Kristie was dying of leukemia, Laurie Kotas, who now runs a Southern California foundation devoted to children with life-limiting conditions, remembers how few places she could turn either for medical care or for emotional support. “There really was very little in medical care for terminally ill children. It took many years just to get to borderline adequacy.”

Twenty-five years later, pediatric palliative care —the specialty of caring for children with life-threatening conditions, relieving their pain, and helping them live as long and as well as possible—has achieved a new status.

The specialty has been accredited by the Joint Commission, the gold standard of professional recognition. As of 2006, palliative care was certified as a subspecialty by the American Board of Medical Specialties (ABMS). Knowledge of this subject is required of doctors passing their board exams in pediatrics. A small and dedicated group of doctors, both in California and nationally, have expanded the presence of palliative care for children in hospitals across the country.

Perhaps most encouraging of all, the mission of pediatric palliative care—the relief of suffering for patients and their families and ensuring the best possible quality of life—has made headway in public policy. In 2005, Florida received a federal waiver allowing children with life-threatening conditions to receive hospice and palliative care services in their homes without giving up curative treatments; the program, Partners In Care, is now available in most Florida counties. California launched a similar pilot program in 2008, which has now been implemented in eight counties, most recently in Los Angeles and Fresno.

In the Affordable Care Act of 2010, Provision 2302 states that electing hospice care for a child does not preclude payment for curative services. This means that reimbursement decisions are less likely to dictate the difficult choices that children and their families must make. To sustain this momentum, these promising new policies need to be clarified and implemented; more doctors and hospice programs need to be brought into the field; allies must be found both inside and outside organized medicine; and the mission of palliative care needs to be entrenched in American medicine and culture. While each of these trends is positive, staking out a permanent presence for pediatric palliative care may be as challenging as gaining traction in the first place.

Passing New Laws: Policy Matters

Changes to payment and reimbursement policies, especially by public programs such as Medicare and Medicaid, typically have tremendous influence on access to care and on the settings in which care is offered. Provision 2302 allows children enrolled in Medicaid and the Children’s Health Insurance Program (CHIP) to receive reimbursement for curative and hospice care simultaneously, though the life expectancy of these children still must be estimated at six months or less.

The significance of Provision 2302 is considerable. Most important, it makes the hospice benefit available, at least on paper, to many children who previously were not able to access it because they were still receiving curative treatment. Lower-income children and their families are especially likely to benefit.

Provision 2302 should also influence the benefit policies of private insurers who cover seriously ill children. Many insurers have already been demonstrating flexibility by covering both curative and palliative care in individual cases. Broader and more consistent payment policies should also encourage hospices to accept children.

By not forcing parents or providers to choose between relieving pain and offering hope, the changes to payment rules should also help lessen the stigma surrounding the death of children that continues to hinder the expansion of palliative care. As Frank Deford, the sportswriter whose eight-year-old daughter Alex succumbed to cystic fibrosis, wrote:

“It’s different, a child dying. It isn’t just that children are supposed to keep on living. …They carry the hopes of all of us when they go off.”

Provision 2302 also complements the ongoing demonstrations in Florida and California that allow children with Medicaid and with certain life-threatening diagnoses to receive home and community-based care and life-prolonging treatments. Similar programs have been introduced in a number of other states, most successfully New York and Massachusetts. While Provision 2302 is more restricted than these programs in retaining limits on a child’s eligibility due to the sixmonth life expectancy requirement, how this law is interpreted in practice remains to be seen.

People and Institutions: Gaining a Foothold

In addition to finding ways to pay for care, the main challenge for this emerging field is finding enough qualified physicians, nurses, hospice workers, and social service workers to care for more than a fraction of those children in need.

Pediatric palliative care is a team effort that begins at the time of diagnosis, takes place in multiple settings, and continues for an indeterminate length of time. A recent study of six of the largest hospital-based programs in the U.S. found that their young patients lived longer than their adult counterparts, showing both the vital need for pediatric palliative care and the unique challenges it poses.1

In many respects, the spread of pediatric palliative care parallels the effort to make hospice care available for older Americans. In the 1960s and 1970s, seniors had few options other than dying at home or in miserable circumstances in nursing homes that barely deserved the name. A series of exposés and testimony by senior rights groups helped shift opinion in Congress, and a hospice benefit was added to Medicare in 1982.

While the numbers of children needing palliative care are heart-wrenchingly high, estimates of the number of children who suffer from conditions that could qualify for treatment range from half a million to one million, they are still not large enough to make a culture of caring well for seriously ill children a priority at most hospitals, and in most communities. Bringing together a team of doctors, nurses, and social service workers to treat them and their families properly, in multiple settings, is expensive. There are persistent gaps between the revenues the care can attract and patients’ needs.

While caring for children with life-threatening illnesses takes place both inside and outside the hospital, the growth of hospital-based programs has been vital. Most programs are of recent vintage. When Dr. Stefan Friedrichsdorf of the University of Minnesota became a newly-minted fellow in pediatric palliative care in the 1990s, he could count his colleagues on the fingers of one hand. Minnesota saw its first palliative care patient in the late 1970s and now handles up to 90 children at a time with 35 full-time staff. Along with Akron Children’s Hospital and Children’s Hospital Boston, it is one of the largest programs in the country. While many existing programs serve inpatients only, Minnesota and Akron Children’s serve inpatients and outpatients alike.

Dr. Friedrichsdorf compares building a palliative care program to “building a new lane on the highway.” He notes that once hospital administrators overcome their initial denial of the importance of these programs, they tend to steer the most socially disadvantaged and ill children in his direction. Because pediatric palliative care programs are labor-intensive, serve a relatively small number of patients, and are rarely profit centers, forging alliances with administrators and with other departments is critical.

Thanks in large part to changes in licensing and certification boards of internal medicine, pediatric palliative care has become much more common in hospitals. According to San Francisco-based pediatric nurse and activist Christy Torkildson, “The benefits of this model are much more accepted now. Most children’s hospitals now have palliative care in some way…just not one hundred percent.” Roughly three-quarters of U.S. hospitals have at least one staff member dedicated to pediatric palliative care, along with an estimated 80 percent of large hospitals who now support palliative care departments of some kind.2

This effort to integrate pediatric care with palliative care is being led by physician champions nationwide—many who, like Sutter Health’s Dr. Lorry Frankel, came to realize the gaps in their pediatric specialty training and became devoted to building the field. Dr. Frankel notes that doctors typically “hope for the best, but don’t plan for the worst. No child should die. But despite our wonderful medical interventions, children do die.” He stresses the need for a genuine contingency plan for the treatment of every child with a life-threatening condition: “Physicians need to have a care plan that includes palliative care and hospice as part of the treatment. They don’t necessarily have to carry out the plan but it needs to be one of the options.” Such plans invariably need to include pain management, a goal which is critical to gaining the trust of patients, their parents, and fellow doctors alike.

For aspiring doctors in palliative care, roughly 80 percent of the board exam remains devoted to adult palliative care, but some knowledge of palliative care is now required for all aspiring doctors. The numbers of those certified in palliative care continues to grow: 47 doctors were certified after the first ABMS board exam in 2008 and 1,274 physicians through other boards in that year alone. It is important to note that the grandfather clause that allowed certification in the field of palliative medicine without fellowship training is set to expire in 2012.

According to Frankel and other doctors, receptivity to this goal has been increasing even as the resources available to treat terminally ill children outside the hospital have remained flat or even declined. For instance, the number of hospices with services for children has grown to roughly 450 nationwide (from just four in 1983), but the number of service providers has shrunk during the recession. Because of California budget cuts, for example, there are no providers of hospice care for children in either Alameda or Contra Costa County, and caregivers travel 20 to 50 miles from Marin County to serve these patients.

Hospital-based programs have been successful in getting philanthropy to begin institutionalizing their mission. For instance, Akron Children’s Hospital has created an endowed chair based on a $1.2 million gift from a family foundation. The University of Florida, Jacksonville has recently inaugurated an endowed professorship in pediatric palliative care on the basis of a similar gift.

However, a simple increase in numbers of caregivers is not necessarily enough to meet the need. As Terri Warren, executive director of Providence TrinityCare in Torrance, one of the state’s largest hospital-affiliated hospices, points out: “I believe that a highly competent social worker can bridge the needs of adult and pediatric patients well, but their level of experience and comfort with children really determines if they can be effective at their job.”

Reducing the shortage of professionals and institutions for the diagnosis and treatment of orphan diseases will continue to depend heavily on the parents and relatives of children with life-threatening illnesses. The advocacy work of these parents has been critical both to changing laws and to changing attitudes. But as Laurie Kotas puts it, “Families are petrified of the word ‘hospice’ when it describes a child. We are trying to make both the word and the experience more palatable.” Doing so is imperative for raising money from the government, foundations, and individual donors that will keep services available for those in need and expand them geographically.

Mission: Riding the Palliative Care Express

Thanks to the many improvements in clinical care, children are living much longer with what were once considered terminal illnesses. This should allow earlier discussions between caregivers and families and the development of plans that meet the needs of families as a whole.

To be sure, however, the blur- ring between terminal and chronic illness raises expectations for a higher level of resources to be applied to such care, both for children and for older Americans. It raises questions about financial and emotional support for parents, especially if one or both parents are compelled to leave the workforce. As UCSF Medical Center neonatologist Dr. Sally Sehring rightly notes, there is “no Alzheimer’s day care for kids.”

Fortunately, these needs will be addressed during a moment in which interest in, and funding for, palliative care is rapidly growing. As Dr. Sarah Friebert, a longtime palliative care expert and activist, confidently predicts “The kind of care involved in palliative care and hospice is what medical care in the future will increasingly look like.” With the growing prevalence of chronic illness and the rising expectation that patients will take an active role in determining the path of their own treatment, the advantages of palliative care—prolonging life, increasing patient satisfaction, and lowering costs—are becoming readily apparent.

The value of palliative care is backed by research findings in the broader medical literature that suggest such care not only improves the quality of life but extends it as well. A recent land- mark article in the New England Journal of Medicine by Dr. Thomas Lynch and his colleagues, for ex- ample, showed that lung cancer patients who received palliative care lived several months longer, and experienced higher quality of lives, and less depression, than their counterparts who lacked such care.3

Likewise, a 2008 Mt. Sinai School of Medicine study found that pairing severely ill patients with palliative care specialist reduced the overall cost of a patient stay, in particular by lowering lab and testing costs. If otherwise unmeasured costs, including unnecessary pain and suffering by patients and their families, are added in, the relative value of palliative care becomes even more striking.4

Moreover, there is suggestive data that investing in pediatric palliative care may improve the bottom line for payers. A recent report published in the Journal of Palliative Medicine, “Massachusetts’ Pediatric Palliative Care Network: Successful Implementation of a Novel State-Funded Pediatric Palliative Care Program,” indicates that a statewide pediatric palliative care program is both highly workable and relatively low cost.5 Engaging universities, academic health researchers, and the National Institutes for Health to undertake further research on pediatric palliative care to corroborate such findings may well be the most important step of all.

Concrete positive examples of how existing programs and policies are working are imperative, both for parents and for primary care physicians. With this in mind, it will be critical to expand and stabilize the networks of caregivers outside the hospital so that doctors who have previously been reluctant to make referrals have a regular connection to hospices.

Moreover, the fate of federal health reform depends on building networks of coordinated care among physicians themselves and among different types of institutions devoted to acute, palliative, and long-term care. Demonstrating successfully how to build teams of physicians and allied personnel—the rock on which pediatric palliative care is founded—will be a vital example for the payment and workforce reforms expected in the broader U.S. health system of the future.

References:

Entering the Mainstream

1 Chris Feudtner et al., “Pediatric Pal- liative Care Patients: A Prospective Multicenter Cohort Study,” Pediatrics 127(6): 1094-1101, June 1, 2011.

2 Diane E. Meier, “The Development, Status, and Future of Palliative Care,” in Diane E. Meier, Stephen L. Isaacs, and Robert G. Hughes, Palliative Care: Transforming the Care of Serious Ill- ness, Robert Wood Johnson Founda- tion Series on Health Policy, San Fran- cisco: Jossey Bass, 2010.

3 Jennifer S. Temel et al., “Early Pallia- tive Care for Patients With Metastatic Non-Small-Cell Lung Cancer,” New England Journal of Medicine, 2010; 363: 733-742 (August 19, 2010).

4 R. Sean Morrison et al., “Cost Sav- ings Associated With US Hospital Pal- liative Care Consultation Programs,” Archives of Internal Medicine, 2008; 168(16): 1783-1790.

5 Kira Bona, Jennifer Bates, and Joanne Wolfe, “Massachusetts’ Pe- diatric Palliative Care Network: Suc- cessful Implementation of a Novel State-Funded Pediatric Palliative Care Program,” Journal of Palliative Medi-