What Palliative Care Means to Us
I was recently asked to write about our pediatric palliative care story for a project the National Institute of Nursing Research (NINR) has initiated called “Palliative Care, Conversations Matter.” What follows is my response. This article was later revised to fit within their 500 word-limit. I thought you might enjoy reading the longer version.
My first son, Levi, was born at Christmas time with severe brain damage affecting every area of his brain. The Pediatric Neurologist was unsure if he would be able to clear his airway (suck, swallow, gag, choke, cough). After 3 weeks in the NICU, the doctor encouraged us to transition to caring for our son at home with the support of a pediatric care team. Initially there was a lot of confusion and misunderstanding between us and the NICU staff about Levi going home on hospice care. As parents, it was not our perception that he was going home to die. It wasn't until the palliative care nurse and social worker met with us and the hospital staff that we learned this was going to be a palliative team that included a nurse, social worker, chaplain, and physician, all of whom had extensive experience in working with families like ours. After two initial visits and help with coordinating medical supplies and oxygen, it was time to bring Levi home. My husband and I were excited to leave the hospital and frightened to be caring for our first child, with intense medical complexities, alone and at home. How would we ever manage?
The moment we arrived home, our palliative care nurse and social worker were literally at the front door waiting for us. They stayed for a long time, helping us navigate those first fragile moments, helping to build our confidence that we could care for our son. For weeks, each day the nurse would return. He answered my questions, helped me navigate my fears, learn how to keenly observe my son and begin to understand Levi's efforts to communicate with me in spite of his greatly impaired abilities. The nurse asked thoughtful questions of me, encouraged me to become my son's expert and advocate. Most importantly, he taught by example the importance of being fully present with my son. Gradually, I discovered how this was a doorway though which I could enjoy nurturing and loving Levi.
Given that Levi's brain damage was so profound, it was likely his brain stem was affected and doctors were unsure if his autonomic systems (ie: breathing) would function properly, the chance of him having a medical emergency was very high. This soon lead to questions and conversations about what to do in an emergency?
Our palliative team helped us identify our values as parents, which led to a discussion about how our values could be translated into decisions about how to care for Levi, both day to day and in an emergency. We worked through our lists of must-do's and must-avoids for Levi. Did we want to be aggressive in our choices and provide him life by any means necessary? Did we want to allow his life to unfold with supportive care and allow it to cease in natural progression?
Further discussion happened around the various medical options, particularly in an emergency situation. Our palliative team also helped us understand the innate connection of the body, mind, and spirit that this is as present for children as it is for adults (something we later learned is not the belief of every medical team). We talked though many questions including: How do you discern between the rise of an illness like pneumonia and the surfacing of the end of life? How do you navigate your own desire to “do something” quickly (like call 911), and the reality that your child may need something different? What is that something different?
As these discussions progressed we learned that making an emergency plan is not like walking up to a buffet and getting to choose a little of this and a little of that. It is more like going to a restaurant with pre-set meals. You choose the meal with seafood, soup and chocolate dessert, or you choose the meal with chicken, fruit, and flan. You get to choose one road or the other, with an understanding of where each road leads in regard to the impact upon the body and soul of your child.
It was anticipated that kids get sick, and for Levi this would likely mean his first cold would become pneumonia because of his inability to swallow. At 6 months of age, this happened. Our palliative team helped us navigate the nuisances of how to care for Levi in a way that supported our care plan. They supported us as parents, with our wide range of emotions, fears, and the deeper layers of exhaustion. They helped us determine it was time to expand our medical “toolbox” for Levi with the addition of new medications, suction and neb machines, and an oxcimeter. Thanks to their support, we were able to care for Levi at home, avoid ER visits and hospitalization, and stay focused on loving Levi while being true to the care plan we had established. After two months of riding the edge between life and death, Levi's lungs were clear and he was pneumonia free! We celebrated with a bucket of chicken at our favorite park.
Levi remained on home-based palliative care for four and a half years. Gradually, as we became more confident in our ability to care for Levi, the nursing visits shifted from daily to weekly, to bi-monthly. Our social worker continued to visits every few months. We engaged the chaplain in conversations around the intersections between our faith and the hard realities of parenting Levi. The chaplain was the only person we found who really understood our journey as parents and who could engage us in meaningful spiritual conversations. Their perspective helped us in our grieving, healing, and the discovery of spiritual “ah-ha” moments.
Soon after Levi turned one year old we took the major leap of welcoming a palliative respite volunteer into our home. She learned how to care for Levi so that I could take a break, get in a nap, and eventually do my grocery shopping. Her help was greatly welcomed and needed, although it was a huge step for us to begin to entrust someone new with Levi's care and life. Our volunteer's kindness, sweet personality, and her adoration of Levi really helped make our transition possible. To this day she and her husband continue to be of tremendous help to our whole family.
Thanks to a grant that our palliative care team received, we were able to begin music therapy sessions at home with Levi. Initially these sessions were a creative way to discover his likes and dislikes, ways to bring him comfort and joy. Over the years we were able to use music therapy as a way to help Levi deal with his anxiety during transfers and positional changes, to help him regulate his breathing, reduce pain and increase comfort, reduce his spasticity, and engage in meaningful play with his younger brother.
What does Palliative Care mean to our family?
Relationship
Nurses, doctors, and a whole team who intimately know Levi: his history, his care plan, current challenges, and what lies ahead. Who know me as a parent: my personality, my preferences, my roadblocks, my fears. They know our whole family. They are people we can call upon 24/7.
Creativity
Customized care that encourages out side of the box thinking and integrative medicine. For example, Levi had an NG feeding tube placed soon after birth. In the world of western medicine this tube is used as a temporary solution for a few weeks maybe a month or two. Thanks to the education and support from our palliative team we were able to help Levi maintain his NG tube for 2 ½ years and avoid Gtube surgery until he got older and stronger.
Less Hospitalizations
They are expensive, emotionally and spiritually exhausting, and risky. Aside from Levi's newborn ICU stay, he has only been hospitalized twice in his life. This is in great part due to our palliative team. Less hospitalizations and ER visits are just one of many was our palliative care team supports emotional and financial “savings” in our lives.
Longevity
Levi is a child who was not expected to live beyond a few days let alone long enough to meet and form a relationship with his younger brother. I can honestly say that without the partnership of Levi's palliative team, he would not be alive today, 5 ½ years later, and enjoying such a high quality of life.
We believe that palliative care should be the standard of care for all children, adults, and their families.
