The lovely cliche, “We are all patients” is just that. At every medical conference, or in the new lobby of the hospital, that phrase is offered. While it is true in a statistical sense, it has a snarky sound to the new patient, reeling from his induction into the medical world, foreign and threatening. It can really seem snarky to those who know how poorly patients can be treated, how overwhelming the language of illness is, and how chaotic a hospital setting is for most.
The patient experience for someone who speaks the language, whose friend is a specialist, or can understands the imaging reports and lab values, is in stark contrast for those lacking such resources. Not much we-ness in those two patient groups!
Certainly the medical people who suddenly become patients, or are thrust into being a caregiver, can offer their own colleagues insight into those new roles. But rarely is the newly diagnosed patient, one who has never “known” how the system works ready to take on this role. He is often the patient at the greatest risk–especially when told, “Be your own best advocate.” Most of the time, that “Be your best” does not give the patient anything, but a reminder of how lost he is.
The recent convert to patienthood who can navigate the system may be a wonderful translator of the dialect and the cultural mores of that system, but with limited impact. If that medical pro turned patient is not also willing to change that culture, to be more open, to provide ready access to information, and to teach to the wider world, most patients will not be well-served by this new awareness. As a society, we will continue to be inefficient in our care of the sick, have poorer individual and community health, and waste incredible sums of money.
Patients could be given readable information about what the standard of treatment is for their disease. They can learn that the oncoloigst should recommend more frequent imaging, or that there are other treatments than the scalpel and chemotherapy. They can learn how to enhance their daily health, how to monitor side effects, to clarify their own health concerns. Patients can be guided to credible online resources or patient groups so they can ask the new question, compare notes, learn the changing vocabulary.
Doctors can tell patients that diagnosis is tricky and requires testing and feedback along the way. They can remind patients of the uncertainty and complexity of cancer, or a chronic disease. They can welcome questions about side effects, new studies, and treatment options. The dynamic will shift as the patient becomes more knowledgeable, or has greater medical needs, and the doctor must shift as well.
Patients and their providers need to partner with one another, with the patient at the center of all those relationships. The patient needs ready access to his records, information relevant to his needs, and an atmosphere of collaboration, appropriate to the moment. Anything less is damaging and wasteful, and we ain’t got time and money for business as usual.
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Filed under Glossary, Your Role
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