New Blogger: Pediatricians' Perceptions of Palliative Care

(Editor's Note: This is the first post from Pallimed's newest contributor, Dr. Lyle Fettig. Lyle is a palliative care physician at the Indiana University in Indianapolis. We invited Lyle to join the blog because of his well-written, erudite, and wise comments over the years, and ongoing committment to the use of new media and social networking to disseminate and discuss palliative care research, news, and policy. In addition, Christian was feeling a little lonely being the only Pallimed (mainpage) contributor with a full head of hair, so Lyle now tips the balance to 2-2. We are delighted to have Lyle join us. For those of you who think that we already post too much (I know you are out there), don't worry: we are planning on keeping our current volume of content steady (usually 2, and at most 3, rounds of posts a week). Please welcome Lyle to the blog, and comment away. --Drew.)

As a longtime reader and an occasional commenter, I’m honored and excited to join the crew here at Pallimed and I thank Drew, Christian, and Tom for the opportunity. I hope to contribute to the volume of posts while maintaining the quality that is well established. I’ll dive right in.

Pediatrics has a survey that assesses pediatricians’ perceptions of palliative care and their preferences regarding timing of palliative care consults. The study assesses how pediatricians define palliative care (and their view of the relationship of palliative care to hospice), what the pediatricians’ personal experience is with palliative care, and whether pediatricians agree with the Institute of Medicine’s recommendation to refer pediatric patients “before the end-of-life.” Pediatricians from Florida and California were surveyed. These states avail Medicaid waivers for pediatric palliative care services to eligible children. Of the 303 respondents, 76% were in private practice and the remainder practiced in an academic setting. Both generalists and subspecialists were included in the survey and there was an equal distribution of time in practice (with a third practicing less than ten years, a third between 11 and 20, and a third more than 20).

Of respondents, 41.9 % defined palliative care to be the same as hospice, 31.9% defined them differently, and the rest weren’t sure. Pediatricians at academic medical centers were twice as likely to define palliative care as different from hospice. About half of respondents had made a referral to a palliative care service previously, a percentage which wouldn’t have seemed high to me if they had surveyed pediatricians exclusively in academic settings, where I suspect most non-traumatic pediatric deaths occur. Since a significant minority equated palliative care with hospice (I'll call them "conflators"), I suspect that many of these referrals were to a hospice, not a palliative care program per se. Of those that had made referrals, the vast majority (83.7%) had referred two or fewer patients.

Participants were asked to indicate their preference for timing of palliative care involvement for patients in the course of 13 different diseases. For each of the diseases, they were asked to indicate whether a referral was indicated “early” in the disease course, in the “middle” stage, or at the “end-of-life.” It’s unclear how “early” and “middle” were defined. Although it wasn’t explicitly stated, it’s implied that the “end-of-life” was defined as when “curative therapy is no longer the goal.”

Depending on the disease, 44 to 59 percent of respondents indicated that a referral was appropriate at an “early” or “middle” time during the course of the disease. Patients with diseases for which fewer disease modifying therapies are available or which are more commonly associated with death before adulthood (such as metabolic diseases, muscular dystrophy, and severe cerebral palsy) were thought to be better candidates for early referral than patients with other diseases such as sickle cell disease or a seizure disorder.

Although it’s not clear what time frame respondents had in mind when thinking of an early or middle course referral, I’m pleasant surprised that so many would consider ANY referral before the end-of-life. I would have guessed that the 41% that were conflators might have been more likely to make late referrals, but the multivariate analysis suggested that conflators were no more likely to make a late referral than non-conflators. Equally fascinating (or baffling?) was the finding that almost a third of respondents thought that home hospice care was “always or often needed” early in an illness but then only 75% thought it was needed at the end-of-life.There were certain other broad elements of care (which are likely focuses of a palliative care service) that pediatricians generally thought were always or often needed, including: support counseling (93% of respondents), pain management (74%), and other symptom management (87%).

In the discussion, the authors reference the importance of language as well as clearly defining what services are provided by whom and when they are provided:

Although the IOM stated that the end of life is too late for referral, physician responses showed that deciding to refer patients earlier, especially immediately after diagnosis, can be problematic and may be difficult to implement. Although approximately one half of respondents would refer patients before the end of life, few reported referring patients at diagnosis. In practice, early referrals may be even less common. The findings suggest that early timely referrals for children with diverse diseases may remain inequitable without a shift in the working definition of needed services or an agreement on terminology.

The National Consensus Project for Quality Palliative Care provides guidance for the uniform development and maintenance of palliative care programs, and I presume that the guidance applies to pediatric palliative care. There are several mentions of pediatrics in the NCP’s guidelines. It might be helpful to survey pediatricians about their perceptions of each of the NCP domains of care (which are more specific than the elements referenced in this study), how well they perceive themselves as managing those domains of care, and what role palliative care might have in each domain.

One advantage that adult palliative care programs may have over pediatric palliative care program is that prognostication is often times easier in adult populations (especially in advanced cancer). Thus, non-PC adult healthcare providers may conflate PC and hospice, but the impact to the adult PC service may be more on timing of referrals rather than on volume of referrals. The struggle upstream may be even more important for peds palliative care programs. The question, “would you be surprised if this patient died in the next year?” may not be as relevant in pediatric palliative care. Non-prognostication related criteria may be more relevant. For instance, the majority of pediatricians in this survey might be surprised that some have suggested incorporating palliative care into the treatment of sickle cell disease from the time of early childhood.

The language in the very first paragraph of the article may unfortunately be an example of how inappropriate use of terms can confuse providers (and subtly reaffirms the views of those providers who believe hospice and palliative care are one in the same):

The Institute of Medicine (IOM) emphasized a need for enhanced pediatric palliative care services in When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families; however, palliative care programs for children often mirror adult models, providing services only during the last 6 months of life, when reimbursement is available.

Of course, while almost all hospice programs adhere to the less than 6 month prognosis limit as mandated by Medicare, I'm not aware of an adult (or pediatric) palliative care program that deliberately restricts referrals as such.

I’d be interested in comments from pediatricians out there and also wish to know more about the Medicaid Waiver programs in these states.