When I tell people that I study palliative care for children, I usually hear something like, "You mean taking care of children who die?" It is hard for most people to fathom palliative care for children. The term palliative care often brings to mind images of sick and dying adults.
It IS sad to see any child sick, and it is devastating to see a child die. But what many people may not know is that palliative care is really about making the most of life. Palliative care is as much about supporting life as it is about ensuring the best possible death. So what does palliative care really mean?
The National Hospice and Palliative Care Organization proclaims that palliative care helps people "facing serious or life-limiting illness to live as fully as possible, surrounded and supported by family and loved ones." This sentiment is echoed by the World Health Organization's definition which starts, "Palliative care is an approach that improves the quality of life of patients and their families..."
In my work, palliative care means focusing on relieving the physical, psychological, social and spiritual impact of illness. For a child with cancer, that could mean having a doctor with expertise in controlling pain who prioritizes minimizing her terrible bone pain. Or it could mean having regular home visits from a nurse so that parents of four children can spend more time with their family and less time traveling to and from the hospital. Palliative care provides counseling to the depressed and anxious sibling of a child dependent on a breathing machine. Palliative care acknowledges and supports religious, spiritual, and non-Western approaches to enhancing health.
Some people may equate palliative care with dying patients because the terms hospice and palliative care are often used together. These two terms have important differences. Hospice is an insurance-driven term used with people predicted to live less than six months. Palliative care describes a holistic approach to care for anyone with serious illness.
Palliative care is not just for the dying. While it is true that we owe enormous attention and care to the approximately 42,000 children who die every year in United States alone, we must also remember the 400,000 more children living with complicated medical problems. Serious childhood illness has a lifelong impact on families who may experience physical, psychological and even financial burdens. Taking care of these suffering children and their families is a moral imperative.
Our country has recognized this imperative across the last decade. For example, in 2010, President Obama signed the Patient Protection and Affordable Care Act (PPACA), which includes a provision, called "Concurrent Care for Children." Concurrent care enables Medicaid to pay for palliative care services and curative treatments simultaneously if a child is eligible for hospice. So a child can get chemotherapy to treat cancer and still have a palliative care nurse come to his or her house when he or she has uncontrolled pain. As another example, the Institute of Medicine recently released their report "Comprehensive Cancer Care for Children and Their Families." This book describes recommendations about how to integrate palliative care into the treatment plan for any child with cancer.
Unfortunately, research shows that 30 percent - 50 percent of hospitals have no pediatric palliative care program at all. Of the hospitals that do have programs, coverage is variable. Ninety-five percent of hospitals do not have on-site weekend coverage and 30 percent of programs do not have in-person or telephone coverage for nights and weekends.
Clearly, we still have more work to do.
The top need is to ensure all hospitals have a palliative care program. I am lucky that at my institution, we have a well-staffed pediatric palliative care team that includes board certified palliative care physicians who work alongside social workers, chaplains, art and music therapists, and a bereavement specialist to provide care 24 hours a day, seven days a week. All hospitals who care for children need to invest in this kind of multidisciplinary care team to support children suffering from serious illness and their families.
Developing these kinds of comprehensive palliative care program requires financial support. Currently, about 55 percent of the operating budget for in-patient pediatric palliative care programs comes from the hospital, almost 30 percent from philanthropy, and 10 percent from billing. This means that hospitals must be philosophically and financially invested or rely on donor contributions. On Jan. 1 the Center for Medicare and Medicaid Services (CMS) will begin reimbursing clinicians who conduct advance care planning conversations with their seriously ill adult patients. This is a huge step in the right direction for adults. But this will not help children unless Medicaid and private insurers do the same.
Finally, we need more research and attention directed at the palliative care needs of children. We know from a recent study published in the Journal of Palliative Medicine about important barriers to receiving palliative care for many different ethics groups. We need similar studies in children.
There is nothing more tragic than to watch a child suffer or die. There is no way to candy coat that reality. But pediatric palliative care can help children and their families live life to its fullest. We need to ensure that every child who needs that care can access it.