Connective Issues Spring 2022

“MEDICINE IS NOT A SPECTATOR SPORT”

By Ashwin Palaniappan If you have a family member with Marfan, Loeys-Dietz, or VEDS, you know that hospital stays are likely to be part of your life. And that means not only visiting your loved one, but also advocating for them. Jim Young of Atlanta, GA, is well-versed in this area. His 25-year-old daughter, Heather, has had more than 15 surgeries and spent more than 120 days in the ICU. Most recently, she was at Duke University Hospital where she had her third open heart surgery, second extended ICU stay, and 20th in-patient procedure. According to Jim, the patient’s family and loved ones play an important role in the medical process. By empowering themselves to participate rather than passively watch from the sidelines, they can make a big di ff erence in achieving a positive outcome. In other words, “medicine is not a spectator sport” and, because of his experience, he wanted to share his insights and advice with our community. ★ Adopt an analytical, concise communication style that mimics the physicians providing care, so that you can maximize the information received. People with Marfan, LDS, and VEDS receive care from several physicians and, in the process, patients and families may have more questions than time they have with providers. In the process of getting answers, the Young family found the greatest success when they adopted a communication style similar to the healthcare providers. Being on the same wavelength as physicians, the Young family experienced better engagement. ★ Consciously direct your questions to the relevant and appropriate members of the clinical care team. Jim found di ff erent questions were better directed to di ff erent members of the clinical care team. For instance, his daughter’s cardiothoracic surgeon would receive di ff erent questions than his daughter’s critical care physicians. By consciously diverting questions to speci fi c physicians, they were able to gain comprehensive answers from the speci fi c providers without overburdening a particular provider. This active participation is part of Jim’s belief that “the family should empower themselves with the right to know.” ★ Expand your team if you are juggling with a full-time job or other commitments. The Young family felt strongly about having at least one member of their family in the hospital with their daughter. This allowed them to observe and communicate aspects of their daughter’s health to her providers. This also translated into them being involved with the rounding team and hearing fi rst-hand the plan of care for the day. For families unable to have a

member stay with their loved one in the hospital, the Young family recommends expanding their support teams. ★ Have members of your care team be interchangeable by consistently updating each other on clinical updates. Members of Jim’s family would continuously update each other so that all family members were in the loop and understood new developments and plans of care. This allows providers to be able to communicate updates and developments to multiple members of the support team and not be limited to one individual. ★ Act as the bridge between di ff erent disciplines, and be the connector between

p Jim and Heather’s team was among the top fundraisers at the Atlanta Walk for Victory in April.

di ff erent specialties. Jim stresses the role of the family in acting as the bridge between the di ff erent specialties. For instance, a patient who receives care from a cardiologist and ophthalmologist would bene fi t from family members being aware of the treatment plans outlined by the di ff erent specialties because they can reinforce the thoughts of another specialist who is not present when a care plan is being outlined. ★ Provide observational data, but try not to evaluate the data prior to presenting it to the providers. Jim has done his fair share of waiting in hospitals, but has learned there is so much more the family can do. By being actively present in the loved one’s care, a family member will be able to see the e ff ects of treatments and interventions and can communicate this to providers. The Young family found providers most receptive to this extra source of information when they presented this observational data at face value without evaluating it themselves. Trusting the providers to interpret the data the family members provide is part of the approach the Young family took to ensure the most optimal care for their daughter. Jim's take home message: The goal is to give your loved one the most emotional and mental security possible. When developing your care team, realize that it is not a one-size fi ts all. It is a one-size fi ts-one approach; take time to identify the arrangements that work best for your family and the framework that supports your loved one the most. “A family can advocate, they can participate, they can support, and, in doing so, they will make a di ff erence,” says Jim. “Whether it’s a family, partners, or friends, the active involvement of the patient’s support team can be the crucial key to a successful outcome.”

Ashwin Palaniappan is a medical student at Brown University's Warren Alpert Medical School.

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