We were admitted to the oncology / hematology unit. “We” because, even though my son was the official patient, our family is a unit and we are all affected. Nikolas is a social person and we commit to him that I would never be alone on this journey.
His care affected me, his brothers, and our extended family and friends for the next year. Even neighbors we didn’t know participated in a meaningful way. The consumer of health services is not a single “patient,” but a group of people who are interested in and support the health and well-being of the individual.
Nikolas’ case was rare for adults and almost unheard of for children. The clinical team took more than a week to generate a formal diagnosis. Because Nik lacked white blood cells and platelets, the clinical team initially thought he had aplastic anemia, which means the bone marrow is not working properly, a life-threatening disorder that requires a bone marrow transplant. Unfortunately, Nikolas ’diagnosis was even worse: mature peripheral T cell lymphoma (PTCL). Lymphoma is a cancer of the lymphatic system, which is part of the body’s fight against germs and includes the lymph nodes, spleen, thymus gland, and bone marrow.
An excerpt from Humanizing Healthcare: Hardwire Humanity into the Future of Health
by Summer Knight, pages 19-27 (McGraw Hill, April 2021).
Lymphoma can affect all of these areas and other organs throughout the body. Some types are more forgiving to children, as there are well-established treatment protocols that can achieve permanent care. But PTCL is extremely rare with fewer than 700 children diagnosed worldwide, extremely aggressive, and there is no standardized treatment or care. No effective treatments have been established; therefore, the hospital did not have any standard PTCL protocol. So the doctors resorted to treating Nikolas with a standardized chemotherapy treatment with which they were familiar, essentially adopting a “better guess” method for shotgun.
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The staff members with whom we initially interacted in the unit were empathetic and spent time explaining what would happen during the stay. The initial doctor was a pediatric oncology fellow, which meant he had finished his residency in pediatrics and focused on his extensive training on cancer treatment. We went through the decision-making tree, all the tests needed to formalize the diagnosis and preparations, such as establishing a line under Nik’s skin to access his vascular system (blood) with ease and frequency. Nikolas ended up getting blood tests and daily infusions for much of his trip. He also needed surgery to nail himself to the bones, including the spine, to attract fluid around the brain to determine if he had cancer in the neurological system. His doctor answered our questions and answered with care and empathy.
Due to the rarity of Nik’s condition, we met a dizzying number of doctors in that initial week. They would dedicate themselves to explaining and answering our difficult questions, even anticipating questions that did not occur to us. Due to the rarity of his condition and this academic / clinical approach, we felt we were in the right place for Nikolas ’care.
But the IQ of the approach does not always match the very important emotional EQ quotient that refers to emotional intelligence. In other words, optimal clinical care includes both system intelligence (physicians and computer-supported diagnostic and treatment algorithms), with emotional compassion and empathy. With the diagnosis of PTCL, the situation changed. For such a rare condition, Nikolas ’attention shifted from these empathetic doctors and collaborators to the chair of the pediatric oncology department. Some of the staff said it was an honor to have her, but the tenor of the relationship and the treatment changed drastically.
She had a style of command and control, and our questions seemed to bother her. At various times, I even felt ridiculed, I was told to stop being a doctor and just be a mother. I explained that as a mother concerned with medical studies, I could ask questions that were more difficult to answer than other parents. But he often refused to take the time to answer my questions, saying he had to go to a meeting by turning on his heels and leaving the room.
With a cancer diagnosis, it’s not just about the pain and discomfort that are already going on in the body. It is also the discomfort of treatment, which can make people feel sicker than the cancer itself. It’s also about what goes through your mind. What are you afraid of? Nikolas, as a young teenager, suddenly had to fight his own mortality and possible deterioration. He had to deal with issues that challenged a mature adult: should he harvest the sperm because the treatment would leave him sterile? Should he shave his head now or let his hair fall out?
Nikolas and I wanted to have a relationship with her doctor, but we felt a strong distance between her and us. She would come in, demand something from Nikolas, get frustrated if he asked her, answer with him, and then turn her heels to leave without asking if we had any questions. We wanted to build trust with the goal of optimizing Nikolas ’health.
Finally, Nikolas and I scheduled a formal conference with his assistant oncologist. We explained the importance of a relationship with her, that we confided her life to her and that we felt out of the exchange of information. Nikolas said that when he started examining him without asking permission, he felt assaulted, as if he was being treated not as a person, but as a disease. She replied that she was too busy and needed to submit to requests.
Nikolas told me that he felt he did not consider his best interests; it was as if his reputation, and perhaps even the possibility of posting a case review on him, mattered more than his care. Without this relationship, Nikolas became frankly uncooperative at times, channeling his adolescent rebellion. He refused to answer questions or offer his arm to do a dust check or blood draw unless the nurse said “Please.” His mood darkened; everything became harder. Many of the staff had not yet had children and therefore had little experience with teenagers and criticized me for not controlling my child. They did not realize that Nikolas was a young adult trying to assert his independence and ownership of his body and his care plan.
Fortunately, we had an army of family and friends who would support us on our journey. But that blessing came with a challenge. We tried to keep the army coordinated and up to date on prognoses and treatment plans while maintaining our normal family activities. Fortunately, for the past fifteen years, I have helped create digital health platforms. I had recently moved to a new area of the country as a co-founder of a startup, Firecracker Health, to create an experiential digital platform with the benefit of improving communication for patients and providers. Called “Fuse,” it aimed to gather all the information about a person’s health, treatment, and related finances. In this way, consumers of health services and their natural support network (NSN) of family, friends and other volunteers could collaborate with the care team regardless of location.
We started working with companies to sponsor the platform for their employees ’caregivers as well as for healthcare systems. When Nikolas became ill, we quickly adapted the platform to place it at the center of the system and gave access to our natural support network, as well as its clinicians and health care plan manager.
Level 1 gave access to the entire system, including clinical (provider) and financial (health plan) information. In addition to these two stakeholders, we also granted this level of access to me, my sister, and a close friend.
Level 2 did not include clinical or financial details, but gave access to all appointments, events, and pending tasks in which our natural support network could participate and assist you.
Level 3 only offers visibility to our blogs. We would post daily about what was going on: updates, feelings, challenges. We changed the way we added images, especially emojis about how Nikolas felt. Level 3 people could comment through a social media style design.
While the platform was Nikolas focused, it also supported me. Because of our network, unlike other parents in the oncology department, I got the time and space to maintain my physical and mental health and Nikolas was never alone in the hospital. The platform connected clinical providers with the electronic health record, biometrics when we were at home, the combined clinical care plan and personal life plan, medications that were changed weekly, and a set of virtual health tools that allowed meetings in various facilities. It also allowed for a large network of family, friends, and other volunteers who could sign up for care tasks or updates.
Assistance team members who joined Fuse received another advantage. Medicine tends to turn humans into bodies to treat and the platform reminded providers that patients have thoughts and feelings as well as economic and life struggles. Care team members were able to see a side of our family that they would never have experienced without the platform. . . as well as how much we loved those who were compassionate with us. By joining the platform, they created a therapeutic alliance with us and began caring for Nikolas and me as their primary caregiver in a more holistic way.
Featured Image: Doctor talking about treatment options with a patient. Photo courtesy: © 2016 – 2021 Fotolia / Adobe
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