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A Chronic Care Patient’s Perspective on Boundaries and Consent

Posted on Oct 22, 2020 by Emily Parks

    There are many changes I would like to see in 2021. Universal healthcare, check. More accessible healthcare to vulnerable populations, yes please. Lower price of healthcare, of course. Unfortunately, we will not see those changes in 2021 because each will take a lifetime and a half to happen.

    To fully answer the question, what changes would I as a patient like to see in 2021, I must focus on the deadline, the end of 2021. What changes can be made in 365 days in our large, ever-expanding, chaotic healthcare system?

    That’s easy. Boundaries—an understanding of boundaries. To be honest, it may take a little longer than 365 days but it can most certainly be accomplished even in the slightest way starting tomorrow. But how, Emily, you may ask, how can integrating more boundaries help healthcare? This is a good question, especially since medicine is incredibly intimate. It does involve, after all, someone examining and making judgement on your body.

    Let me give you an example. As a chronic care patient, I was sitting in a clinic examination room waiting for the internist to arrive. She did and we chatted about my medical history, tests that needed to be completed, and next steps. She approached me casually and started lifting up my shirt. Without even thinking, I swatted at her hand, gave a dirty look, and said “Can you ask first?” There was a pause and then she asked, “May I see your stomach?” I approved and we went on with the exam.

    What the internist did wrong is obvious; she didn’t ask for my consent. However, she did correctly acknowledge my subsequent request and not react defensively. She got on with the exam.

    I understand how boundaries fall to the wayside in medicine. It’s not me as an individual in question, it's the body I inhabit, for better or worse. What is good medicine without medical staff actually examining a patient’s body? That's where the intimate part comes into play. And the more chronically ill you are, the more your body feels accessible to everyone else around you. I must admit, there often are times when I feel as if others have more control over my body than I do. I have more scars than I can count as a result of procedures I had very little say over, thus small interactions such as the example above are very meaningful to me.

    So how do I want to be treated? I’m glad you asked. Let me give you another example.

    I was an inpatient at a hospital during morning rounds. The medical team reviewed what had been done, what’s next, and my lab results. The attending physician came over and asked me a few questions about how I felt before asking to check my stomach. I consented and as he touched my stomach, I said “Thank you for asking.” He stopped and looked me straight in the eye and said:

    “Well, it’s your body.”

    “Yes, but most people don’t ask.”

    “You must let them know, they ought to ask.”

    “Oh, I do, but I also like to thank those who do ask.”

    Later on, a physician’s assistant doing morning rounds brought up that interaction and very kindly said, “That was a good lesson for me because it's easy to forget that it is your body, and we should ask.”

    I don’t know if learning to respect patients’ boundaries is something healthcare professionals gain the longer they practice medicine or if it comes from their own personal experiences. Perhaps the attending physician had his own health concerns and had been an inpatient himself and the internist has not. Either way, boundaries are extremely important to this patient as well as I suspect to many others. I have better rapport with physicians who consistently respect my boundaries, which also allows me to be more open and authentic with them. Most importantly, it helps me feel some sense of control over the chaos that is living with chronic illness.

    To learn more about patient communication preferences and how they have changed during the COVID pandemic, check out the guide, "Patient Communication Preferences: The COVID-19 Impact."

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    Emily Parks

    Emily Parks

    Emily Parks is a 27-year-old professional living on IV nutrition due to chronic pseudo-obstruction and short bowel syndrome since infancy. Her lived experience of collaborating with hospitals and healthcare professionals across multiple healthcare systems has provided her with insight on hospital management and administration, the power of conscious communication on access and delivery of care, and the economics of medical innovation. Emily serves as the Massachusetts Pilot Director for Health Advocacy Summit, a member of Young Adult Representatives of RDLA, and on the MedStar Georgetown Hospital’s Patient & Family Advisory Council for Quality and Safety. She currently resides outside of Washington D.C. working as a supervising vocational specialist within the disabled community while studying the impact of medical trauma and medical PTSD on patients and their treatment outcomes.

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