When tragedy strikes, one looks for comfort in many places. When traditional resources–relatives, physicians, clergy members–do not completely satisfy, one may reach out for comfort from unexpected places. Increasingly, people turn to online health and wellness support communities.
My family’s tragedy occurred when my father suffered a Sudden Cardiac Arrest, or SCA, in 2010. As I watched him lay lifelessly on life-support in that hospital bed, the man who was undoubtedly the greatest mentor in my life and my hero, I frantically searched for the answer to the question, “How can we save his life?” As I had just begun my first year of medical school, I of course first turned to the medical staff. Although they were very knowledgeable, I felt a growing sense of despair that was attached to the negativity and poor outcomes of SCAs. Even with the advent of Arctic Sun, a hypothermic therapy treatment sometimes used on SCA victims, the medical staff painted a bleak prognosis. We were encouraged to remove the life support, allow them to make my father comfortable, and say our goodbyes.
It was within this moment that I refused to stop before we explored all resources. I searched online and found the Sudden Cardiac Arrest Association (SCAA) Support Community on Inspire. I hastily blogged my story, praying someone had a similar experience and could offer guidance. Within minutes I had multiple responses from others who had suffered similarly and had positive outcomes. It was within this community that others shared my so far tragic experience, but offered me light when I was consumed with darkness.
This online community did not replace my relationship with God, the medical staff, or my family, but it provided an additional outlet for answers. Unquestionably, the best advice I received from group members was to stop being a medical student, and start being a daughter.
With this newfound motivation, my family decided to not remove the life support. The medical staff was truly amazing and respected our decision to give him a couple of weeks. They recognized the lack of knowledge surrounding Arctic Sun and anoxic-hypoxic brain injuries outcomes, but still acknowledged the severity of the injury. They agreed to begin physical therapy before he was even conscious, and allowed us to re-create an environment he was used to by playing favorite tunes or leaving the news on while we could not be there. As my father continued to fight to recover, we all stuck by his side, through physical therapy, speech therapy, and my mother and I had even volunteered to be the first in the car with him when he got behind the wheel again for the first time in April. My father is our miracle.
As I continue my journey in medical school, I reflect on the positive influence the Inspire/SCAA community had on my family and myself.
In my heart, I know that I will never be able to do my job alone, and although I can offer my experience and perspective, I will encourage my patients to be proactive in their own care. Although some physicians may find my perspective naive, I find it important to empower patients to work alongside medical staff in their care. Social networks can be “prescribed” cautiously, if one educates a patient of potential risks that may come along with social networks. As physicians, we should encourage patients to reach out to these networks, while advising them to discuss and share their care regimens with their healthcare providers.
Through my experience, it is clear that these sites offer encouragement between others who share similar experiences and health concerns, and create a sense of solidarity among them. Many times, even physicians can learn from patients who have become experts on their own health disparity, acquiring tips on how patients have changed their daily routines to accommodate their ailments.
It is important to me as a future physician to acknowledge that I may not be able to provide all of these aspects to my patients in a 10-minute office visit. Through my experience, it is evident to me that overcoming tragedy requires a team, and not just one aspect of one.
Stephanie Lyn Lewis is a medical student and a participant on the Sudden Cardiac Arrest Association Support Community on Inspire.
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