Heide Aungst

 Caring for the Child with Chronic Illness 

The words “hospice” and “palliative care” have long made parents cringe – and it appears that they might scare off some pediatricians, too.

New research from the University of Florida shows that those labels alone could be a key reason why pediatricians aren’t referring families to palliative care services when they could most benefit – even for diseases where children might live into young adulthood, and when there’s still a hope for a cure.

“Most pediatricians define palliative care similar to hospice and think of it as end-of-life therapy, when curative therapy is no longer an option,” explains Lindsay Thompson, MD, assistant professor of Pediatrics at the University of Florida in Gainesville, who headed the research published in the May issue of the journal Pediatrics. “Our research found that pediatricians, because they equate palliative care with hospice care more often than not, there needs to be a practical definition of this kind of care – one that emphasizes different kinds of services throughout the course of a child’s lifetime.”

That misperception is also the reason that the organization Children’s Hospice International, working  with the Centers for Medicare & Medicaid Services (CMS), has left those specific words off a bill before Congress. The measure (HR 722) is called the Children’s Program of All-inclusive, Coordinated Care (ChiPACC), and it is designed to get families help earlier in a child’s life-limiting illness.

“Parents have been telling us for years that they cannot enroll in hospice or palliative care, even though they desperately need the services, because the words mean ‘giving up,’” says Ann Armstrong-Dailey, founding director and CEO of Children’s Hospice International, Inc.,  in Alexandria, Va. “ChiPACC goes further than hospice and palliative care programs have in the past by blending them into the overall health care of children with potentially life-limiting illnesses, so that they can receive services from time of diagnosis, along with curative care. Families and pediatricians shouldn’t have to choose between one or another.”

Passage of the bill would make ChiPACC a Medicaid state plan option. Currently, a model of care that would keep options for a cure open to families is available through the 1915(c) Home and Community-based Services waiver. Colorado, California and New York have approved 1915(c) waivers, and Florida offers a similar program, managed under a different authority.

However, obtaining waivers is time consuming, often taking years to complete.  Waivers also expire, which is why the groups are pushing to get the bill through Congress. In the past, ChiPACC has received bipartisan support from Congress through appropriations, so Armstrong-Daily says she is optimistic about the bill’s passage later this year.

 “The Medicaid hospice benefit has been historically underutilized by children,” says CMS spokeswoman Mary Kahn. “The main reason for this appears to be reluctance on the part of parents and physicians to forego curative treatment. In recognition of this barrier, CMS is partnering with Children’s Hospice International to implement a blended package of curative and palliative services to children with life-threatening conditions and their families.”

In 2000, the American Academy of Pediatrics recognized the importance of palliative care for children with life-limiting conditions. It issued a statement urging pediatricians to refer children to palliative care services early, regardless if the child was near death, as well as to stay involved with the child and family.

“The AAP supports an integrated model of palliative care in which the components of palliative care are offered at diagnosis and continued throughout the course of the illness, whether the outcome ends in cure or death,” the statement reads in part.

In addition, the statement urges that pediatricians “continue to care for the child, while making a timely referral to palliative and hospice care.” This includes chronic illnesses that may even allow a child to live into adulthood.

In fact, about half a million children are living with life-limiting illnesses. Yet only about 53,000 children die annually, and included in those statistics are accidental deaths and premature births.

Besides referring patients too late, some pediatricians also misunderstand the types of diseases that qualify for palliative care. In other words, it’s not just for cancer anymore. And, thanks to earlier diagnosis, new treatments and technology, children with a variety of diseases are living longer.

 “Consider an HIV infection,” says Thompson. “That used to be an automatic death sentence. And now it’s a manageable chronic disease.”

And, HIV/AIDS is one that should qualify for palliative care services.  Cardiac, neurologic, genetic, metabolic, and mitochondrial diseases all qualify.  Even a disease such as cystic fibrosis, in which a child typically lives into adulthood, should be covered under palliative care services, argue proponents of palliative care.

“In most palliative care programs, we would never say no to a patient with a diagnosis that is potentially terminal,” explains Sarah Friebert, MD, director of A Palette of Care Program in the Haslinger division of Pediatric Palliative Care at Akron Children’s Hospital in Ohio. “Although the average life expectancy (of a child with cystic fibrosis) is in the 30s, suppose the child has a very severe respiratory infection or another complication and wasn’t able to recover from that. They’re living a medically fragile life at which death could occur at any time.”

Palliative care teams consider themselves a “safety net” for a child or family. They provide physical, emotional, and spiritual care with a team that often includes physicians, nurses, psychologists, child life specialists, clergy, and music and art therapists.

Friebert argues that referrals should be tied to diagnosis more than prognosis, and the “recognition that with a certain diagnosis comes a long and arduous journey for the child and the family.”

Other pediatric palliative care specialists argue that referral might not always be necessary at the time of diagnosis, but rather at a time when it best suits the individual child.

“I think when a family is in crisis, and a pediatrician feels overwhelmed and out of their expertise in order to provide the kinds of services that these families need, that’s a good time to refer,” says Gary Lerner, MD, a pediatric hospitalist at the Children’s Hospital and Medical Center of Omaha, who works with the hospital’s palliative care team.

There are two main reasons why pediatricians don’t refer to palliative care, says Chris Fuedtner, MD, PhD, an attending physician at The Children’s Hospital of Philadelphia, who writes frequently about pediatric palliative and hospice care.

“One is, ‘Will the parents get upset if I even raise the issue?’” he explains. “I think that very much depends on how it’s raised, and whether it comes across that this is a way of improving your child’s care, enhancing the quality of their life, or whether the message inadvertently comes across that you’ve got to get ready because the end is near.”

In addition, Lerner advises pediatricians to choose their words carefully when approaching a family about palliative care, especially if the local program is run by a hospice organization.

“You may want to refer away from the word hospice, just because of the images that it conjures up in adult minds,” Lerner says. “You want to stick to key words about planning for the future, about alleviation of pain and suffering.  You want to talk more about quality of life, as opposed to quantity of life.  The AAP, in fact, has a wonderful statement in terms of the goals of palliative care being to add life to a child’s years, not years to a child’s life.”

The second obstacle to pediatricians recommending palliative care is the physician’s worry about losing control of the patient.

“That’s rare,” Fuedtner says. “Most palliative care teams want to foster the existing relationships and not replace them.”

The benefit works in both directions. Pediatricians can use a palliative care team as an extra set of eyes and ears to care for the child at home or in the hospital. Yet the pediatrician should remain the foundation of the child’s care.

“It is the pediatrician who is in the community where the child is, who knows other kids and families who are being affected by this child’s illness, who will be there after the child dies – if the child goes on to die – who will continue to take care of the child’s siblings and manage all of their physical and emotional and psychosocial needs around having an ill sibling,” says Friebert. “The pediatrician really needs to be the anchor of how this all works for the family’s survival.”

Friebert recommends that pediatricians keep an open line of communication with the closest palliative care team, whether it’s based at a children’s hospital or community organization, and not  hesitate to ask about specific patients.

“What pediatricians need to know is first of all, this isn’t about end-of-life, and there’s a lot of kids who could benefit from these supportive services who aren’t getting them because of this misunderstanding,” she says.

If the ChiPACC bill becomes law, it could erase that misunderstanding among pediatricians. And, of course, help families better understand that palliative care programs mean giving children a better quality of life, not giving up.

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The words "hospice" and "palliative care" have long made parents cringe -- and they might scare off some pediatricians, too.

Heide Aungst

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