This article is also available at the Cancer Knowledge Network.
I have to admit—one of the first reasons that palliative care first piqued my interest was because I wanted to learn more about death. But as I’ve delved deeper into palliative care, I’ve come to realize just how much more comprehensive it is. While increasing access to hospice care is a component of what palliative care provides, palliative care does so much more for patients and families.
When I first started volunteering with patients at C.S. Mott Children’s Hospital, pediatric oncology jolted me to see how cancer can affect all humans, even kids. But the realization that terminally ill children face the unknown prospect of death every day was most jarring to me. Death was no longer an abstract fate for the elderly but rather a real concern for the babies I held, the kids I spent time with on Friday evenings.
As a teenager myself, it was especially hard to see other teens having to go through the experiences of being diagnosed and treated for a life-threatening disease like cancer. I became interested in how people of all ages, and especially children, understand and cope with death. I found that palliative care does not shy away from these end-of-life topics but rather starts many of these difficult conversations. Similarly, palliative care provides additional support by devoting attention to the pain that patients may be experiencing as well as the discomfort from symptoms and side effects.
The American Academy of Pediatrics (AAP) recommends that ideally, palliative care should begin (or at least be offered) when a child is first diagnosed with a life-threatening disease[1]. Pediatric palliative care aims to support young patients and their families throughout the entire experience of illness, from diagnosis to treatment, remission to relapse, and even end-of-life when applicable.
For kids undergoing treatment for cancer, imprisonment by IV pole and pain by poke may be what they know. Many have no choice but to curl into the humbling fetal position for spinal taps. These children hold on to the simple pleasures in their lives by putting a port on a teddy bear or playing with a Barbie doll that has no hair. Each child finds a different way to cope, and I have grown to admire these children. Pediatric Palliative Care, along with other health disciplines such as Child Life, provide additional support to help children cope with a cancer diagnosis and the difficult treatments that it entails.
We’ve come a long way in treating pediatric cancer over the past several decades, but it’s not enough to stop the uncontrollable growth of cancer cells without recognizing the psychological scars left behind by its presence. Cancer treatments can have life-long health consequences, and the support of pediatric palliative care involvement throughout the course of treatment has the potential to have a lasting impact on patients.
This, to me, is what pediatric palliative care is about. Pediatric palliative care is about ensuring that young patients have the best of quality of life that they can while experiencing life-threatening illness and its corresponding medical interventions. It is about devoting special attention to more than a child’s physical health but also their mental, emotional, and spiritual wellbeing. As a multidisciplinary team generally composed of physicians, nurses, social workers, psychologists, and chaplains, pediatric palliative care is able to support children as well as their siblings and parents more holistically.
Palliative care, especially in the pediatric world, encompasses end-of-life and much more. As the AAP states, “Reserving palliative care for children who have exhausted every curative treatment and are dying would mean that many other children would miss out on the benefits that palliative care can offer.” It has been encouraging to see how much pediatric palliative care has become established and valued over the past several years, and I look forward to getting involved in the field in the future.
[1] http://www2.aap.org/sections/palliative/whatispalliativecare.html
Investigating Illness Narratives 
Thank you for your article emphasizing the importance of palliative pediatric care. As a parent of an adult son, who survived pediatric brain tumors and neurosurgeries.Time-frame 1980’s. While he and we as a family received excellent care, the closest comfort for parents facing the agony of losing a child was a stenographer’s pad and a pencil tied onto a pipe in a tiny bathroom. While much has changed regarding palliative care and end of life issues, death for many is still a keep at arm’s length reality. as in drive-in funeral homes and the possibility to send online sympathy notes.
In 2003, during my husband’s last few weeks of life after a three-year battle with cancer, we became the recipients of an extraordinary palliative care team at Dartmouth-Hitchcock Medical Center. Going home was not an option, however, with the gracious support of the floor nurses and palliative care staff, his hospital room became our home. I was able to participate freely in his care. There was a moment when I said to his doctor, I know he is dying but I can’t seem to say the word can tou help me bridge this gap.
Not long later,the palliative nurse arrived. She and my husband talked often. She said to him, “Where would you like to die here or at home?” My husband said without a hint of surprise at this question, “I’d like to die at home, but wherever my family is that is home to me.” It was an extraordinary time, we sang with a room full of family and friends, and celebrated his life. The underpinning of our strength was, of course, our faith;however, the underpinning of how we chose to approach end-of life was supported by that new palliative care program and its team.
A friend of our happened in when during the last hours. He said I will leave, No, I said stay with the rest of us. Later he spoke these words. “I went to comfort Carla and Werner. Instead, they comforted me.
We were not on a death vigil. Together we took an end of life journey.
Dr. Ira Brock who my husband’s palliative care doctor.He was a young man then on the frontline of establishing the palliative care program. He has a book titled, “The Four Things That Matter Most.” It is a compilation of his work with patients and their stories.
I apologize for the lengthy comment, but this subject has long had a place in my heart. Thank you again for your interest in palliative pediactric care.
Carla,
Thank you so much for taking the time to share your personal experiences with palliative care with me. I am so moved by your story, and energized to hear about how these palliative care efforts enabled your husband’s peaceful death as well as the lasting impact they have had on your own life.
This idea, of celebrating life at its end, of finding comfort in the uncomfortable, is very powerful to me. I love how your husband recognized that more so than the location of his death, it was the people around him that mattered. Palliative care focuses a lot on honoring people’s wishes to die in the hospital, at home, or at hospice centers, and your husband’s comment reminds me that it’s important to think about the role of surrounding family and friends as a defining part of that environment as well. I agree that while much has changed about how our society copes with death has evolved, we still have a ways to go.
Thanks again for sharing, I really appreciate your insight into palliative care!
Trisha