Let’s get right to it: This is an apology letter to frontline clinicians. And a call to action. I’m a patient advocate, and I’ve spent most of the last 20 years fighting for patient- and family-centered care in national laws and regulations, and in local practice. Prioritizing the needs of patients and families above all else. It is meaningful work to which I feel deeply called, and it is hard work ...

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As I was scrolling through my Facebook feed one morning, I noticed an article with a title starting with: "When Doctors are Wrong" with a picture of a newborn baby with a breathing tube in the NICU. I immediately opened the article and started reading it with interest because my baby also looked this way, so tiny, in the NICU, with lots of tubes all covering her little body. As I ...

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An excerpt from My Beautiful Detour: An Unthinkable Journey from Gutless to Grateful. Managing chronic illness can leave a person susceptible to emotional and mental health issues that can further exacerbate their physical symptoms.  Post-traumatic stress disorder can often accompany managing a physical illness, and often is the illness that ...

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An excerpt from What Does It Feel Like to Die?: Inspiring New Insights into the Experience of Dying. People who are diagnosed with a fatal disease sometimes do more than cope. They grow. They repair or strengthen relationships. They find a deeper spirituality or meaning in the life that remains ...

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As I age, the probability of acquiring yet another health condition seems to, unfortunately, increase. There's always one test or another that is on my to-do list, be it bloodwork, X-ray, MRI, or maybe a CT scan thrown in for good measure. I comply usually with a sense that it is for the benefit of my health, i.e., to enable my doctors to determine the best mode of treatment for ...

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For many years after I became chronically ill, I blamed myself for failing to recover my health. I told myself: “You get sick; you get better. It’s as simple as that.” As a result of this stubborn attitude, I refused to set limits, even though it would have been a tremendous help, not only in managing my symptoms but in keeping them from flaring. Learning to set limitations I have a background ...

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I was cleaning out the top shelf of my closet — a location where, hypothetically, treasures can be found. I came upon something that was wrapped in a nondescript brown paper bag that smelled oddly of mothballs. I cautiously reached inside and found an heirloom quilt that apparently had been passed down through generations. I had discovered it an estate sale, and now it had finally come to rest in ...

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According to Wikipedia, a livestock guardian dog is a type of pastoral dog bred for the purpose of protecting livestock from predators. If only our doctors had these noble creatures to protect them from the predators of the world, to alert them when those interested in only the "bottom line" entered the halls of healing, our medical practices. Apparently, a "fox is guarding the hen house," one who is not ...

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My experience trying to obtain the drug prescribed by my rheumatologist is a cautionary tale. This is not about whether the doctor ordered it, or how the specialty pharmacy (CVS) must wait for approval from the insurer before filling the prescription, but the fact the patient who resides and waits at the end of the line, me, is treated not as a person in need, but an expense. In my ...

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I was 5 years old on a busy New York City street with my mom, dad, and two sisters. A large man in shabby clothes holding a garbage bag in his hand stood on the corner waiting for the light to change. My dad reached into his wallet and handed the stranger a $20 bill, patted him on the shoulder, and said, "Have a good day, my man." Dad knew everybody — ...

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