Until we needed to enroll my daughter Alexis in a hospice program, I really had no idea how poorly we as a country manage the needs of children who face terminal diseases. Admittedly, having a conversation about children who face death from disease is not the most pleasant of topics. With that said, considering the fact that cancer is the number one leading cause of death by disease in this country for our children, it truly surprised me, and continues to surprise me, the lack of standard of care for children in hospice settings.
When we originally enrolled Alexis in the local hospice program, in fact the only hospice program in the area, there was no pediatric protocol. This seemed quite strange to us considering the number of parents we knew who had indeed lost children in our area. As we discussed hospice with other cancer families from around the country, we learned how some of the other programs operated and were administered. And, more importantly, we heard too many horror stories from other parents explaining how difficult and poorly managed their child’s last remaining days just were. Many of these stories came from the hospital setting. As we were forced to face the reality that Alexis would not survive her diagnosis, we also dealt with the additional fear of ensuring that she remained pain free in the end. Ultimately, it was important that Alexis remain at home with us and not in a hospital setting as we believed that would provide her the most comfort. It was a struggle at first to ensure that Alexis’ needs were met, that the proper services were provided, and that we felt her disease and pain were managed effectively. Thankfully, these needs were met.
Upon enrolling Alexis in the local hospice program, we learned that they needed to hire a pediatric nurse to handle Alexis’ care. Additionally, we discovered there were no standards for what services were available. In essence, we as parents were working to create the pediatric hospice program. This was at a time when all we wanted to do was make each moment count and ensure that our child was as comfortable as possible. Ultimately though, a new pediatric hospice nurse was hired who we grew to truly appreciate very much. To this day, we continue to keep in touch with her. So, why is there no standard of care for children in the United States in hospice situations? That is a good question. At the very least, I think it should be safe to assume that each hospice provider have pediatric nurses on staff and access to other pediatric programs that can be interfaced together as a multidisciplinary team. We can certainly have a discussion as to what other standards are required beyond this single simple requirement.
I personally believe that this topic is much too difficult for most to contemplate. I focus much of my time on raising awareness and funding for research for new and less harmful treatments. Frankly, that is where most of the focus lies, and for good reason. Consequently, so little focus is placed in end of life care. Unfortunately, that is to the detriment of children who face terminal prognoses. For many parents, the choice does not exist. Their child must spend the final weeks and days in the hospital instead of surrounded at home by loved ones in their own room or house. I understand this is not the choice of every parent, and there is no right or wrong decision. Yet, this should not mean that there is no form of standardization across hospice programs, as well as insurance carriers for what a child should be entitled to receive in these situations. And, furthermore, it should not be up to the parents to force either the insurance carrier or hospice program to ensure that these services are provided. Providing some basic standard of care ensures that at the very least, children enrolled in hospice are guaranteed a minimum level of services. In addition, not only does this guarantee that the comfort of the child is paramount, it also provides some peace of mind for the parents who face the most difficult loss.
There must be an acknowledgment that adults and children are not alike. The approach that “one size fits all” in terms of end of life care is unacceptable. The same mentality is in place for the treatment of children with cancer. And thus, the childhood cancer community continues to languish behind, both in terms of treatment and research, but also just as importantly, end of life care. I believe it is time that Congress enters into this conversation and either legislates some basic standard of care to ensure the equality of care for children or at the very least addresses the concerns that are experienced on a daily basis by parents who face this horrible road.