Joan Luise Hill
“The wrist bone is connected to the arm bone…” or at least that’s what the song says. It is a way to realize that our bodies are made up of interconnected parts and a reminder that illness or injury to one part is likely to have an effect on another. Crutches while great for keeping the weight off an injured limb, might result in some back or shoulder pain and we all know medication can cause annoying and unexpected side effects in areas completely unrelated to the problem it is intended to solve.
It seems obvious, but oftentimes instead of seeing an interconnected human, medical providers focus solely on the “problem” to be solved. While that in itself can be a good thing, it only goes so far, and we can be unprepared for the limitations that can result from treatment, not only temporarily, but on a long-term basis. It is important to recognize that as individuals, we are more than the sum of our physical parts or the problem that ails us. We are social beings having needs and responsibilities to our family and community. We are also spiritual beings; our hearts and souls can be broken by much more than worn out valves or blockages, grief and dismissiveness can cause the same painful symptoms. We are intellectual beings wanting to be involved in our decision-making and able to find acceptance, though we are often not sure how to begin. And, we are emotional beings working through issues over time and with processes that may not always be pretty or logical, but take into consideration our past experiences, our perceptions and our wishes.
We need practitioners who are honest with us and who make the effort to understand our needs and concerns. When I told my oncologist that I would only agree to the chemotherapy he recommended if he could also maintain my bone health (which had been severely compromised years before from a different medical condition) he thought I was crazy. Through open discussion he came to realize that instead of being obstinate, I was merely being practical. These epiphanies between patients and their practitioners are important. They are a sign of mutual respect and connection. A wise physician once told me, “Hooks aren’t only for fishing…” His message was to look for this connection, this shared humanness. Once we find it, it becomes the basis for mutual respect and understanding allowing our empathy for each other to flourish.
Patients come in all shapes and sizes. We each have our own narrative. As patients, we must proactively state our case in order to be treated as individuals who are more than our disease state. To do that we must be actively engaged as self-advocates and let our values and wishes be known. This means we must take the time to ask ourselves the hard questions of what matters to us most; what do we want from our health care; how do we want to live; how can we gain strength to return to the people and activities that are important to us; and, how do we want to die all while considering what we believe are important to-do list items like leaving our affairs in good order, wanting (or not) extreme measures to be undertaken on our behalf should they become necessary? These are not easy issues, nor ones we look forward to spending a lot of time dwelling upon. It is a jump shift in thinking to realize that we are the experts on ourselves; yet as a generation who has always wanted it “our way" it is the only way to reach a sense of well-being. We need to be aided by a medical community that is sensitive to our new role and one that recognizes the value in rejecting the past principles of silo-ism, and instead celebrates an integrated model of care with the whole patient at the center.
- Joan Luise Hill, December 2018
- Author, retired health care executive and sometimes patient
- Visit her website Health-E3