Is there any reason to let your doctor know what your priorities are? Yes, because sharing that information can increase your ability to do what you want - if your doctor acts on that insight. Sarah's story helps to illustrate this point.
Sarah, 47, is a single mother with two children in college. She works for an advertising agency. She contracted necrotizing fasciitis - a fast-moving infection that is often fatal - a few days after she had surgery in 2009. Her doctors said that she was going to die. All of her family members flew in from around the country and took up a vigil at the hospital.
Miraculously, she survived. However, she lost almost all of the use of one arm - despite more than two dozen operations intended to save her life and preserve her arm. She has been in physical therapy for more than a year now. They routinely measure how far she can bend her fingers. That assessment helps everyone understand if physical therapy is helping.
However, when Sarah talks about her health and her arm, she doesn't say things like, "I wish my fingers could bend another 20 degrees."
She says things like, "I love to cook. But it takes me three times as long now because it's nearly impossible to chop vegetables with one hand, so I don't cook." She says, "I love to read. But I can't hold the book and turn the pages, so I don't read any more." She says, "It's embarrassing when I eat in a restaurant. I have to ask someone else to cut my meat for me."
Simple fixes could address the obstacles that have robbed Sarah of much of her joy in life and disheartened her. A variety of special kitchen tools are available to make it much easier to cook one-handed. Book holders make it possible to enjoy reading. There are even products called rocker knives that enable people to cut meat one-handed.
A book called One-Handed in a Two-Handed World, third edition, by Tommye-Karen Mayer, provides hundreds of practical tips for people in Sarah's situation.
Sarah has been joined at the hip to the health care system for 18 months. How is it possible that she hadn't even heard of any of these solutions? It is possible because her doctors and other health care providers are focused almost exclusively on health measures such as how far she can bend her fingers.
Her experience is not unusual. Jane Brody, writing in the New York Times, quoted the wife of a man who was losing his eyesight. The woman said, "He sought help at three of the country's best medical centers. And though they tried to treat his vision problem, none told him there were ways to improve his life within the limits of his visual loss."
For over a year, no one whom Sarah deals with in health care ever thought to ask what her priorities are. They never pointed her to the easy solutions that would have gone a long way to restoring her hope and self-sufficiency. After delivering hundreds of thousands of dollars in treatments, the health care system has still failed Sarah.
Health measures such as the degree to which joints can bend or the level of blood cholesterol don't necessarily reflect the patient's wants or needs. No one says, reflecting on a long life, "I wish I had achieved a blood pressure reading of 120/80." Health care is successful to the extent that it enables people to lead the lives they want, not simply to the extent that it achieves a variety of health measures.
The health care system is perfectly capable of helping Sarah. A health field called occupational therapy was created precisely for the purpose of helping people learn how to perform everyday activities (not just their jobs) after they've had a medical problem. The goal is to help them to be as functional and independent as possible.
It's not enough to say, "Oh, it was just an oversight. Her doctor just missed one small detail. He should have written a referral for her to get occupational therapy when she needed it. It was just a little mistake."
It's not a little mistake. It reflects an all-too-frequent failure of health care to focus on what matters to the patient.
What can you do to get what you need? When you visit your doctor, consider explaining your problems in terms of what they prevent you from doing that you really care about. Instead of, "My hands hurt," try saying, "I can't play the piano because of the pain in my hands." Instead of, "My hearing isn't that great," try saying, "I can't talk with my sister in Ohio anymore because I can't hear her on the telephone."
Work with your doctor to find solutions that will enable you to do the things you care about. That's the real purpose of health care.