Providing Palliative Care in the Pediatric Population: An Expert Interview With Sarah Friebert, MD

Barbara Boughton

April 02, 2009

April 2, 2009 — Editor’s note: Studies highlighting new developments and challenges in providing pediatric palliative care were presented at the American Academy of Hospice and Palliative Medicine (AAHPM)/Hospice and Palliative Nurses Association (HPNA) Annual Assembly, held from March 25 to 28, in Austin, Texas. The conference brought together more than 2100 physicians, nurses, social workers, chaplains, pharmacists, and other healthcare providers who practice hospice and palliative care. Studies presented at the meeting described the diverse population served by pediatric palliative-care specialists, and delved into the unique issues facing clinicians who aim to provide qualified and ethical palliative care for children and their families.

To learn more about the young and growing specialty of pediatric palliative care, Medscape Nursing interviewed Sarah Friebert, MD, a pediatric palliative-care expert and a researcher who participated in a multicenter study — 1 of the first to describe demographic and clinical characteristics and outcomes of patients who receive pediatric palliative care — that was presented at the AAHPM/HPNA meeting.

Dr. Friebert is director and founder of the Haslinger Family Pediatric Palliative Care Center at Akron Children’s Hospital, in Ohio. In 2008, the center was selected as a pediatric Palliative Care Leadership Center by the Center to Advance Palliative Care. Because of her drive and passion to help patients and families through pediatric palliative care, Dr. Friebert was 1 of 4 national recipients this spring of the Children’s Miracle Achievement Award.

Medscape: Can you describe the significance of your study and what you discovered about the population served by pediatric palliative-care specialists?

Dr. Friebert: This study was 1of the first to look in an organized way at the demographics of children enrolled in pediatric palliative-care programs, and it enrolled a diverse cohort of more than 500 patients from 6 medical centers. Because the field of pediatric palliative care is so young, we don’t have a good handle on the types of kids we’re serving. We discovered some surprising things. Only 17.2% of the children we served were under 1 year of age, which contrasts with national data that show that the lion’s share of pediatric palliative care goes to children in the first year of life. A total of 65% of the children were also established patients, and only 18% died during the 3-month follow-up, which shows that quite a number of patients benefit from palliative care for an extended time.

Medscape: What other presentations at the AAHPM meeting captured your attention?

Dr. Friebert: There were a number of presentations on decision-making and ethics in providing palliative care. For instance, 1 presentation discussed the framework for making the decision to withdraw physician-prescribed nutrition and hydration. There was also a parent perspective on what it was like to make that decision. Another presentation featured a discussion of cases in which families asked healthcare providers not to inform children about palliative-care or end-of-life issues. Discussing the ethical considerations involved in decision-making is a great opportunity for education for all palliative-care specialists, no matter how long they’ve been in the field.

Medscape: What are the most troubling challenges for specialists practicing pediatric palliative care?

Dr. Friebert: Pediatric palliative care is popping up everywhere, and we need to develop standards for quality and outcomes measurements. There’s also a trend toward “upstreaming” palliative care — providing care to children with complex chronic illnesses, as well as at the end of life. So we’re not tying palliative care to prognosis anymore. But there is still a big stigma associated with palliative care, especially for children, in this country. Many people don’t want to talk about a situation in which a child might die. We have a culture that instead focuses on the latest greatest cures in medicine.

Funding palliative-care programs is also a challenge. These are not money-making enterprises, because supportive palliative-care management is not appropriately reimbursed. We’re struggling to find ways to improve reimbursement and are always working with families to maximize the reimbursement for the care we provide. We don’t want to depend entirely on philanthropic support and grant money because, in the current economy, that support has dropped at the same time as the need for palliative care is increasing. We hope that payers will look at the data and see that quality palliative care saves money — it prevents ambulatory admissions, crisis-based care, and medical errors.

Medscape: What kind of initiatives might we see in pediatric palliative care in the future?

Dr. Friebert: Improving access to care is a big issue, and providing cost-effective care is paramount. But we want to avoid the approach of reinventing the wheel in providing pediatric palliative care in each community. In other words, we want to partner with already-existing pediatric organizations to provide the most cost-effective care and to improve access — to give quality care to the largest number of children possible. The idea is to partner with other organizations in communities so that we can extend palliative care to every child who needs it. It also avoids fragmentation of care. We want to build on existing healthcare models that have been shown to work in communities so that we can extend our geographic footprint, improve quality, and reach more people.

American Academy of Hospice and Palliative Medicine (AAHPM)/Hospice and Palliative Nurses Association (HPNA) Annual Assembly. March 25-28, 2009.

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