We were grateful to host Monika Němcová, MD, who works for Rare Diseases Czech Republic, a patient organization there. She leads a grant-funded project to integrate palliative care into the complex care of patients with rare diseases. She is currently assessing the situation in the Czech Republic, looking at how patients with rare diseases, families and healthcare professionals are informed about palliative care, what palliative care is, if they use it and what their needs are.
The grant for the project is through the Avast Endowment Fund, a part of which included travelling to the United States to visit long-standing palliative care programs to see how they operate. The Avast Endowment Fund was started by a software company which supports projects in the Czech Republic, especially related to palliative care. Their efforts have had a major impact; actually starting palliative care programs in many of the hospitals in the Czech Republic.
In addition to our program at Akron Children’s, Dr. Němcová visited palliative care programs at hospitals in Rochester, N.Y., Durham, N.C., Children’s National in Washington, D.C., and Dana-Farber Cancer Institute in Boston. While in Boston, she also met with the founder of the Courageous Parents Network, a parent-founded organization providing support to families of children with life-threatening illness.
Dr. Němcová observed how the palliative care team at Akron Children’s, and the other programs she visited, consist of more than just physicians, but have a whole team of people from different disciplines providing every aspect of palliative care. Her visit here was particularly informative since our program cares for a large number of children with rare and life-threatening illnesses, much like her program will in the Czech Republic. She also recognized the excellent network of communication among palliative care programs and hospices in Ohio as something to strive for in the Czech Republic, especially as the Czech Republic is similar in size and population to Ohio.
She noted that some of the struggles of palliative care programs are similar in both countries. Stakeholders and the public sometimes have misconceptions that palliative care is only end-of-life care. Although palliative care does provide that, it also serves children diagnosed with life-threatening, chronic illnesses as well, including many rare diseases, and can be provided at diagnosis and follow the child for many years.
We wish Dr. Němcová the best in her efforts to better provide palliative care for children with rare diseases in the Czech Republic, and we hope we have contributed in some small way. She plans to stay in touch and keep us updated on her progress and any way we can be helpful in the future.