NHPCO’s Children’s Project on Palliative/Hospice Services has just released the new issue of its newsletter. This issue of the ChiPPS newsletter offers a PDF collection of articles that illustrate the importance of memory making and legacy building in pediatric palliative and hospice care. A message from NHPCO President and CEO J. Donald Schumacher was included – and is shared below.
(Download the PDF collection of articles)
A Message from Don Schumacher
On August 2, I opened NHPCO’s conference, Developing the Care Continuum, with a discussion about the importance of hospice and palliative care in the continuum of care. I wanted to share just a few thoughts with the readers of the ChiPPS newsletter.
I think many people would agree that the US healthcare system is quite fragmented – hence the importance of creating a continuum that includes hospice and palliative care. This must include pediatric palliative care.
Pediatric care has always been near to my heart and as quality-driven providers, we should be able to support the needs and/or assist in care coordination of all those coping serious and life-limiting illness – this includes children, adolescents, and their family members.
I recognize that pediatric palliative care is something many providers feel uncomfortable offering, but it is something we should understand more fully. We must expand our skill set and explore what resources are available to families in the communities we serve. I commend the work of the Children’s Project for Palliative/Hospice Services in developing new tools and resources to move the field forward.
Pediatric palliative care was specifically addressed in the health care reform legislation passed this year. This was a provision that NHPCO strongly lobbied for. The law allows children who are enrolled in either Medicaid or CHIP to receive hospice services without foregoing curative treatment related to a life-limiting illness. This should provide for a more seamless continuum.
When there is a seamless care continuum, providers work together to develop a coordinated plan that addresses all the needs of the patient and family caregivers. Those of you involved in pediatric palliative care know all too well that the needs of these seriously ill young people and families encompass physical, emotional, social, spiritual, nutritional and financial as well as practical and logistical needs. Care and services should be coordinated by professionals who understand the range of options available and appropriate in each situation.
I also want to stress that the concept of the care continuum is not – indeed, cannot be – solely geared to hospice providers. I know there are many hospice professionals working with ChiPPS but there are many others representing a range of provider types and disciplines, and we all must be involved with the development of the care continuum. Working together towards the creation of a seamless continuum will require us to collaborate and partner in a more expansive way than we’ve ever seen in the hospice community.
I believe that every single hospice provider needs to offer non-hospice palliative care. If you do not, somebody else will. Hospices are the experts in serious and life-limiting illness in their communities and they must be leaders in developing a seamless continuum of care.
So what I’m hoping is that hospices in the United States, in addition to the wonderful things they already do providing care in the last months of life, will become more visible and available as providers of or experts in pediatric palliative care.
Thank you for all you do to advance care for young people and their families.
J. Donald Schumacher, PsyD
NHPCO President and CEO