Lack of Funding and Guidelines for Pediatric Palliative Care Communication Education in US Medical Schools

Currently, there is a lack of funding and guidelines for more pediatric palliative care communication education in US medical schools. The Liaison Committee on Medical Education, which creates overarching guidelines for what must be taught in medical schools, does not even mention the word “palliative” once. The few education initiatives that do exist, such as a communication skills training program for medical students called Oncotalk, have not been scaled-up due to lack of funding. Actually creating these funding and guidelines is the end goal in order to increase pediatric palliative care communication education. However, to get there, the main problem is that there must be enough political pressure and attention around the issue of US medical schools not having enough pediatric palliative care communication education, from the public and specific key stakeholders, such as medical school faculty and students.

Someone must take the lead in generating this political pressure and attention. The Patient Quality of Life Coalition is the optimal group to do this. It is clear that the Patient Quality of Life Coalition values the improvement of pediatric palliative care. Whether this is in its makeup – a coalition including organizations such as American Cancer Society, which focuses on a disease often needing palliative care – or in its support of a recent bill, H.R. 3119, aiming to increase funding and guidelines for pediatric palliative care, the Coalition has spoken up for palliative care in the past. It is also the network with enough influence and connections to create this currently lacking central advocacy group to generate public pressure and attention about pediatric palliative care communication education.

To understand why the lack of funding and guidelines in pediatric palliative care communication education and subsequent lack of these programs in US medical schools is important, it is necessary first to define the field: Pediatric palliative care is a branch of palliative care that addresses pain relief physically, spiritually, and psychologically in pediatric patients as well as their families. This pain relief is crucial to improving the patient’s’ quality of life while they are being treated or at the end of their life.

However, a doctor figuring out how to best relieve a patient’s pain would need to know about the patient and family’s treatment preferences. This can only happen if the patient and family themselves know about the treatment options out there and how they relate to their own financial abilities, spiritual concerns, and so on. Through ample training and experience, the doctor would have information on training preferences. However, with little money to train medical students how to communicate effectively, doctors often don’t know how to best communicate to patients and families about treatment preferences. With the lack of funding for education initiatives, even the few pediatric palliative care communication programs that do exist suffer because, without monetary incentive to read about which education methods are best, policymakers do not inform faculty about best practices. Thus, if a faculty member does want to start a pediatric palliative care program in education, it would be hard for him or her to find information on what methods and topics this program should cover.

As a result, US medical students not educated enough in pediatric palliative care communications become doctors who don’t know how to best communicate with families and patients about treatment preferences. Without information (or with misinformation) from their doctors, these families and patients experience conflict, confusion, and unnecessary stress. In a study on 48 families in Durham, NC, home to medical centers of prestige like Durham Veteran Affairs and Duke Hospital, almost half of the families stated that they experienced conflict with their doctor that had to do with communication, such as the doctor speaking over them in a conversation. In fact, research has shown that, when frequent discussions between doctors and families do not happen or happen poorly, patients experience higher levels of end-of-life stress. Doctors, medical students, and residents also experience more unnecessary stress. Accounts from residents and medical students have stated that, while on clinical rotation, they were forced to have conversations with families they weren’t prepared for because the doctor did not want to, or that the doctor seemed extremely stressed when having conversations with patients and families. Both this lessened patient and family quality of life, and overstressed healthcare workers and students, are problems that the Patient Quality of Life needs to draw political pressure and attention from the public to.

The most recent attempt at creating political pressure and attention (primarily from policymakers directly, not from the public) culminated in H.R. 3119, the Palliative Care and Hospice Education and Training Act. This has already been backed by the Coalition, sponsored by Representative Eliot L. Engel (D-NY) and co-sponsored by Representative Tom Reed (R-NY) along with a bipartisan group of 43 other representatives. While its passing would create public attention through a palliative care awareness campaign as well as provide funding for pediatric palliative care communication education, the likelihood of the bill passing is low. GovTrack estimates it at 1%, and there have been no successful similar bills in past years. The most recent bill, a former version of H.R. 3119, failed on account of there being more pressing health concerns.

This low likelihood of H.R. 3119 means that the Coalition must prepare some other way to create public attention around how the lack of funding and guidelines for pediatric palliative care communication education in US medical schools results in stress for healthcare workers and lowered quality of life for patients and families.

Conversely, if H.R. 3119 passes, sustainable public attention is still crucial to making the education funds that this bill provides for long-term rather than a band-aid until another healthcare issue comes up on the government agenda and distracts the public from palliative care. H.R. 3119 provides funds for an awareness campaign about palliative care, for the general public, led by the Director of the Agency of Healthcare Research and Quality, within the Public Health Service. While current director Dr. Richard Kronick has done research in health policy, he has never practiced palliative care as a specialty or worked in any specialty that where palliative care comes up frequently (such as pediatric oncology). Thus, the Coalition’s help in designing an awareness campaign could be crucial in knowing the most important topics within pediatric palliative care as well as knowing how to appeal to the public (as they are a broader, more diverse group).