My friends and family must be outliers from what many physicians tell me about patients’ demands for expensive, and often futile, care.
Several friends are facing terminal illnesses. Their concerns are about overtreatment and getting into situations that diminish the quality and dignity of their lives. They tell remarkably similar stories of listening to their oncologists’ recommendations for additional (but debilitating) chemotherapy. Then they decide to forgo the recommendations because it doesn’t fit with how they want to live. Their biggest concern is having a good death, because they already know life will not be long.
My Mom has a debilitating disease. She wanted enough diagnostics to know what the problem is, and then told her doctor that she’d come back when the symptoms got bad enough that she would consider medication. Not yet.
Grandma Winchester, my 93 year old mother-in-law, is another good example of health economist Michael Grossman’s theory of consumers’ demand for health and healthy days – not necessarily health care. Health and healthy days provide us opportunities to do what we love, whether it’s time with family, hobbies, or meaningful work. Time spent in doctor’s offices or hospitals is not a preferred way to spend her days.
Within the past
year, she’s chased a bear out of her kitchen and been evacuated twice from her 600 square foot cabin in the Colorado Rockies because of nearby forest fires. She stays in shape by hiking, shoveling gravel on her mile long driveway and walking two miles round trip every day to get the local newspaper and her mail. She gave up driving a few years ago because she wasn’t as sharp as she wanted to be. But she still drives her snow plow truck in the winter to plow that driveway.Though she loves her doctor and has gotten excellent care, she hates going for a visit because it means she has to impose on one of her children or grandchildren to drive her to town. Instead, she appreciates that her physician answers her questions by email. She’s talking about getting “DNR” tattooed on her chest.
About two years ago, her husband of sixty-seven years died in their cabin – just as he always wanted, sitting by his favorite fireplace. Despite being paraplegic for almost sixty years from the polio epidemic, he never developed a pressure ulcer – even in his final days. His family made sure of that.
Grandma will die in that cabin someday. Her family will make sure of that.
I read somewhere that 80% of Americans say they don’t want to die in a hospital or nursing home. But 80% of Americans do die there. The reasons are undoubtedly complex.
Think about your own wishes and what members of your family want. Lots of expensive care, waiting for the next test result, cooped up in a hospital? Maybe some do, but many other people just want to have healthy days, and realistically know they won’t live forever.
What is a good death for your patients? Have you asked?
