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Can living healthy and looking well be a barrier to effective healthcare? Stephanie Wexler found this to be true when she moved to a new city with her husband and started experiencing symptoms that were somewhat vague and common, yet worrisome. She was searching for a new primary care doctor, but found the ones she visited made diagnoses based on her healthy appearance, not on her history and symptoms. In some cases, they sent her home with quick pharmaceutical solutions, but Stephanie felt disappointed that her doctors didn’t always listen actively, dig deeper to find root causes, or consider alternative therapies. Until, that is, she finally connected with a couple of inquisitive doctors, which led to her diagnosis of stage 4 non-Hodgkin lymphoma. It took a serious health crisis to receive the thoughtful and coordinated care she needed all along.
Lymphoma does not usually strike young, otherwise healthy women in their 30s. Certainly, Stephanie was not expecting to be diagnosed with a life-threatening illness. She was, and still is, a fitness fanatic—eating well and staying physically active for most of her life. When she was diagnosed, she and her husband, Erik, had just moved to Maryland, and she was working from home for the first time in her career. She hadn’t had much opportunity to build relationships, make friends, or create a support network in her new city before receiving her shocking diagnosis. Although a network of loved ones and caretakers quickly wrapped their arms around her, she felt unprepared to face so many important decisions and questions. At times she had to remind her clinicians that she had different concerns than their more frequent, older patients. Through this experience, she gained strong opinions about what constitutes compassionate care and what patients can do to try to receive it. She feels fortunate to have opportunities to “pay it forward” by helping educate new patients, participate on advisory committees to improve the patient-doctor experience, and advocate for the patient perspective within healthcare systems. She tells newly-diagnosed patients, who understandably feel lost and confused, to “take some control back by asking questions until you feel informed and comfortable that the treatment plan is right for you.” Her simple but powerful questions are, “What else can we try? What other options are available?”
She tells newly-diagnosed patients, who understandably feel lost and confused, to “take some control back by asking questions until you feel informed and comfortable that the treatment plan is right for you.” Her simple but powerful questions are, “What else can we try? What other options are available?”
For Stephanie, there was a significant difference in how she experienced care before and after her diagnosis. She attributes this to several factors with the caregivers, with the system of care, and within herself. First, she believes patients are best served when their caregivers pay attention to the whole person, and are open to including other perspectives and complementary therapies as part of a well-rounded care approach. Second, she is mindful of a healthcare system that has gotten away from treating the whole person, with specialists and marketed drug therapies sometimes pushing aside a focus on the body as an interconnected organism. Of course, when introduced thoughtfully, specialists and medications can be life-changing and life-saving, as was the case in her cancer journey. But third, and most importantly, Stephanie realizes that as her symptoms continued and her diagnosis became tangible, she became more self-aware of what she needed from a healthcare experience, how her body reacted to various therapies, and how to take responsibility and advocate for herself.
Compassionate care means many things to Stephanie, but starts with respecting the whole person. She knew this before her illness but had it confirmed throughout her healthcare journey—that the body, mind and spirit are very much connected and strongly impact each other. The most compassionate clinicians, in her experience, are ones who have respected this and have helped Stephanie gather a care team around her with multiple perspectives on wellness. To her, compassionate clinicians are buoyed by being part of a team. Compassionate clinicians actively listen and pay attention. They are creative and tenacious. As her oncologist, Dr. Stephen Noga, said during a radio interview with Stephanie back in 2009: “Each person is different and that is something we learn as physicians… Certainly I supported [whatever] really helped Stephanie.” Stephanie calls her oncology team of doctors, nurses, and related caregivers her “angels,” because they cared about her as a person, they were flexible with her needs, and they showed bravery and humor in trying times. Her angels provided the definition of compassionate care.