A Letter to My Son's Care Team
Summer 2016
We have nearly completed our 7th summer of annual clinic visits, where we check in with Levi's long list of specialty doctors. It wasn't until after Levi turned one that I realized I could choose to limit these visits to the warmer months and remove the hassle and risk of taking him into clinics during the winter. Over the years I have learned many more lessons along the way, which prompted me to write the following letter to Levi's various medical care teams.
I was blessed to have this letter recently published in the National Hospice and Palliative Care Organization's ChiPPS' e-journal. The journal is read by professionals working across the country within the fields of Hospice and Palliative Care. The link to the full issue of the e-journal is included at the end of this posting. This is the first medial journal my work has been published in. It is a great honor, and one I hope to repeat.
As we have been visiting Levi's physicians, I have been sharing this letter with them. It wasn't until the 4th clinic visit that I realized I should be sharing a copy with the nurses too. They are often the first point of contact during a clinic visit, and really this letter is for the nurses as much as it is for the doctors.
** Since the initial publication of this letter, several families have found this article to resonate directly with their own experiences. Many have shared it with their child's care teams as a way to bridge the gaps in communication and care.
To My Child's Dear Care Team,
We deeply appreciate all your help through the years as you walked with us through the initial shock of hearing that my newborn son had severe brain damage and was not expected to live long. You were there as we finally got home, made our home into a mini ICU, trying to avoid hospitalizations and long waits in the emergency dept. We have struggled with the roller coaster of fear, hope, despair, and joy. His medical fragility continues and I am amazed that he is now six years old.
I appreciate you and know you try so hard…. However, it is difficult to say everything in a short clinic visit, particularly when it comes to the really difficult issues. So here are some things I would like to share honestly with you, that I hope will enrich you and other health care providers' practice. These are my “top ten” that, if you could remember, would make all the difference.
Respectfully,
MamaShu
1. My child is a whole person.
He is body, mind, soul, and spirit. He is an interconnected being. He is not just a body or a single system of a body. For example, one Doctor of ours was focused on reconstructive surgery for my son's spine when he had just gotten over 4 rounds of pneumonia and was working hard to do basic things like breathing and digesting. Another Doctor at the same time, was willing to delay reconstructive surgery because he recognized my son's fragile health put into question if he could endure the surgery let alone the recovery process.
2. Even though you may not believe it – I know My Child Understands
Even if he doesn't look at you or talk to you, he understands what you are saying. Please be sensitive to his presence with us. Please engage him in the conversation through touch or eye contact rather than talking "over" him while you talk to me. Ask me how best to do this if you don’t know.
3. Every medical decision impacts our whole family
From a change in medication with potential serious side effects, to moving to a feeding tube, to major surgery. All of it impacts the routines, relationships, and quality of life within our home. For example, the idea for adding a “simple” continuous feeding pump to the care plan meant that my son could no longer complete his needed daily physical therapy program. The pump has changed the daily rhythms of our home from mealtimes to bedtimes and has decreased the ease of being out in the community.
4. It costs us a full day's effort to meet you at clinic.
The effort it takes to prepare for my son to leave the house—gathering all of the needed and back-up supplies, moving my son in/out the car, then in/out his wheelchair and into your clinic—is only the beginning. Your clinic is an unfamiliar environment for my child. His anxiety and stress levels increase each time we come/go. By the time we return home, we are both exhausted. It can take a full day before my son has re-stabilized. This is why I ask for more time with you, for you to slow down so we can have a meaningful conversation.
5. We need your participation in Care Coordination
“So what has been happening with your son?” How do I tell my son's doctor all that has happened in the last 6 weeks with the neurologist, pulmonologist, physiotherapist… At least 80% of our routine clinic visits for my son are spent updating each doctor on what the other doctors said and recommended in their clinic visits. Would it be possible to gather the notes from other providers and take a moment to read them before we come? This would allow you and me to spend more of our clinic time on my son's current needs and less time recounting his past.
6. I am my child's expert, you are an expert in your field.
Collaborative conversation and decision making is best for my child. As a parent, I manage everything about my child's care and development. His medical, therapeutic, educational, social/emotional, and spiritual needs. I am with him every day, up late every night, I catch his tears, feel his pain, and witness his miracles. I come to see you because you are an expert in your field. You know things about my child's condition and its trajectory that I cannot see from my vantage point. It is helpful when we can honor each other's expertise and work together for the benefit of my child.
7. Conventional medicine is not the only tool in our toolbox.
Pharmaceuticals, surgery, orthotics—every "tool" has its limitations. The longer my child is alive, the more complex his condition, the more my child experiences these limitations. I have had to search out new ideas and creatively problem solve how to continue to bring my child the highest quality of life and the greatest comfort. When you are not open to tools outside your scope of practice, we both lose out on having a complete conversation about my child's care. We both miss out on learning something new and collaborating on what could be most helpful for my child.
8. I need help making a care plan that reflects my family's values.
Making medical decisions without first having a care plan is risky for my child. Not every option will be helpful or improve his quality of life. As a parent, it is very difficult to articulate my family's values within the context of medical decision making for my child. I need help understanding the options and how my own medical biases can be in conflict with my values. I need a trusted impartial provider who is skilled at navigating this process. Depending on the structure of my family, I may also need help in navigating these conversations with other family decision-makers in a way that promotes unity and not further conflict.
9. It is ok to say "I don't know"
It is ok to acknowledge when you are at the end of your knowledge base. I would prefer you say you don't know the answer to my questions or what lies ahead for my son. I am comfortable with uncertainty; it is a daily part of life with my child. It would be helpful if you could be comfortable as well. When you acknowledge "not knowing" my respect for you increases.
10. Allowing yourself to connect with us on a personal level helps us trust you more
A willingness to laugh, shed a tear, be present with the unanswered questions, share a relevant story from your life; these things all add depth to our relationship. I understand professionally you are taught to keep an emotional distance. I'm not so sure this can be possible when it comes to kids like my son whose fragile bodies and strong spirits can't help but challenge the status quo for all of us.
This article was first published in the National Hospice and Palliative Care Organizations' ChiPPS e-journal in May 2016
