Uncertainty is a common experience in health care. For an upcoming book and ongoing research project, I want to be in contact with patients, families, and caregivers to learn their strategies for approaching, dealing with, and understanding such uncertainty.
For example, Ms. A. has back pain unaccompanied by underlying serious disease. She has no way of knowing whether it will go away in weeks, months, or not at all. She wants an MRI, which accepted evidence indicates will neither aid in treating her pain nor reassure her.
On the one hand, both she and the healthcare provider would like to do “something” as a sign of care; on the other hand, we want to harm neither Ms. A (with tests/procedures that won't work), nor society (afflicted by a health care system which costs too much, delivers poor care in comparison to other systems, and treats people unequally).
There are many scenarios in which treatment is pursued despite evidence showing it does not work more than placebo. For example, hormone treatment in the patient with local (not metastatic) prostate cancer; repeated CT scans for thyroid nodules without symptoms; treatment of ductal carcinoma in situ (DCIS), mammograms in a patient without significant family history more often than every two years.
How do you as a patient, family member, or caregiver seek the best care in such a situation, where things are uncertain and more tests/procedures might not work? What strategies do you use? What should healthcare providers do? Please be in touch with me to help guide this work. zberger1 at jhmi dot edu
See the presentation below for another depiction of the problem.
For example, Ms. A. has back pain unaccompanied by underlying serious disease. She has no way of knowing whether it will go away in weeks, months, or not at all. She wants an MRI, which accepted evidence indicates will neither aid in treating her pain nor reassure her.
On the one hand, both she and the healthcare provider would like to do “something” as a sign of care; on the other hand, we want to harm neither Ms. A (with tests/procedures that won't work), nor society (afflicted by a health care system which costs too much, delivers poor care in comparison to other systems, and treats people unequally).
There are many scenarios in which treatment is pursued despite evidence showing it does not work more than placebo. For example, hormone treatment in the patient with local (not metastatic) prostate cancer; repeated CT scans for thyroid nodules without symptoms; treatment of ductal carcinoma in situ (DCIS), mammograms in a patient without significant family history more often than every two years.
How do you as a patient, family member, or caregiver seek the best care in such a situation, where things are uncertain and more tests/procedures might not work? What strategies do you use? What should healthcare providers do? Please be in touch with me to help guide this work. zberger1 at jhmi dot edu
See the presentation below for another depiction of the problem.
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