Tonight's picture was taken in November of 2002. Mattie was seven months old and playing with one of his favorite toys back then. A canister with shapes, which he could sort and push them through the appropriate hole. Though Mattie was old enough to sit up on his own, you can see that I still put pillows all around him in case he toppled over. Ironically I tried to think of all the ways Mattie could potentially hurt himself, but cancer wasn't one of the things that ever crossed my mind. Until he was diagnosed.
Quote of the day: Among hospice nurses in the community employed by agencies that offer services to pediatric patients, preliminary descriptive analysis has demonstrated that the majority of nurses have fewer than 5 years of hospice experience, have never received formal training in pediatric palliative or hospice care, and have no personal experience providing palliative or hospice care to pediatric patients. Given this finding, it is unsurprising that the majority of these nurses reported feeling somewhat or very uncomfortable providing palliative care or hospice services to children. ~ Erica Kaye
On March 10, 2015, Peter and I presented at a workshop entitled, Comprehensive Cancer Care for Children and their Families, sponsored by the Institute of Medicine and the American Cancer Society. The event was held in Washington, DC. Today, I received an email from a medical doctor at St. Jude who was at this conference and heard us speak about Mattie's end of life care. In her email she shared her latest research with us on palliative and end of life care and wanted us to know the following..................
I express gratitude to you for speaking at the IOM/ACS meeting. My main goal in writing this email is simply to let you know that your child’s story left a profoundly deep and lasting impression on me. Please know that your vulnerability in sharing your difficult experiences has directly translated into a study designed to better understand (and hopefully improve) provision of hospice care to children and families in the community. Most importantly, I hope that you know that your participation in clinical and research meetings is incredibly valuable and important, that we hear and remember your child’s story, and his legacy lives on in the work that we do to improve care for future patients and families.It is funny because you never know who is listening to your story and what impact it will have on them. I remember that conference distinctively, because at it I publicly challenged the chair of the Children's Oncology Group (COG) to endorse the Psychosocial Standards of Care. As the conference was highlighting psychosocial issues and how they impact care, and therefore, I was tired of psychosocial care being referred as an adjunct service, and believed that it was time for the COG (the world’s largest organization devoted exclusively to pediatric cancer research) to take a stand. Which they eventually did. Click here to read COG's statement.
In any case, here are the highlights from the research that caught my attention:
- Provision of home-based supportive resources and services through hospice care has been shown to ameliorate symptom burden and improve quality of life for children with serious illness, mitigate parental burden and psychosocial stress, reduce costs, and even improve the experiences of health care providers regarding interdisciplinary collaboration, communication, and family support.
- In 2007, the National Hospice and Palliative Care Organization conducted a national survey to ascertain the extent of pediatric services available, in which 78% of responding hospices reported serving pediatric patients yet few had a formal pediatric program in place. Data from the 2013 National Summary of Hospice Care showed that only 14% of participating hospice programs have formal pediatric palliative care (PPC) services with specialized staff.
- Each year, approximately 50,000 children in the U.S. die in the context of life-limiting illnesses, yet only 1 in 10 of these children receive hospice services. Data in the context of oncology suggest that many parents prefer for their child to receive end-of-life care in the home, and this preference is supported by the majority of clinicians. Yet fewer than 1 in 5 hospice programs in the U.S. offer formal pediatric palliative care services with specialized staff, and nearly one-third of existing hospices in the region have policies in place prohibiting provision of care to pediatric patients.
- A substantial number of nurses reported feeling uncomfortable with assessment and management of common symptoms; communication around the hopes, wishes, and goals of care of patients and families; evaluation and management of the psychosocial and spiritual needs of family members; assessment of family members for risk factors for complicated grief; and provision of bereavement support.
When Mattie's situation became terminal, Peter and I honestly did not know how that would play out. After all, what does the dying process look like for a child? Our child? Frankly no one could have prepared us for how Mattie was going to die, because it was horrific. Hours of torture, pain, and an inability to breathe. However, while Mattie was still conscious, he made the decision NOT to be home. He wanted to be in the hospital and Dr. Shad (the chief of peds HEM/ONC) encouraged us not to use hospice. Thank goodness I listened to her and Mattie. Because our care team at Georgetown was extraordinary and they lived our journey with us. I can't imagine establishing a new connection with an outpatient hospice team and managing Mattie's end of life care at home. Let me assure you that Mattie's hospital room looked like a war zone after he died. His amazing nurse was literally pushing pain meds every couple of minutes into his IV. Which ultimately did not work, and Dr. Shad ordered propofol to induce a coma and death. So reading that most parents elect for their child to die at home startled me. If I had made this decision, I am quite certain Mattie would have suffered even more than he did.
Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses:
https://www.ncbi.nlm.nih.gov/pubmed/30391654
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