Health Care and Patient Rights


UnknownWith every passing week, I hear another story of patient rights being trampled on—someone who got medical care that they didn’t want and/or didn’t need.  This, despite the fact that the U.S. Supreme Court has ruled, repeatedly, that patient autonomy—your right to accept or reject proposed medical treatment—is indisputably the law of the land.

But as with so many other things in life, you do need to read the fine print.  And very often, you need to read the fine print long before you actually have a medical decision to make.

The first problem may be your doctor.  Does he know what kind of medical care you’d like, and under what circumstances?  And if so, does he or she agree with you?  As Atun Gawande pointed out in his brilliant book, Being Mortal, most doctors have been trained to cure disease and fix what’s broken. They don’t necessarily stop to ask whether the proposed treatment will actually make your life better, or whether the cure will cost more in terms of dollars, physical pain and/or emotional stress than it is worth to you and your family.

As readers of my blog may remember, my interest in bioethics stemmed from my horror at the death of my father, who was bedridden after years of diabetic traumas.  His heart failed half a dozen times over the course of his last year. Despite his repeated pleas to be allowed to die, his doctor insisted on resuscitating him. My father finally died, not because his doctor accommodated his request, but because his heart just couldn’t do it one more time.

The issue is not whether my father had the right to refuse treatment.  The issue—the fine print—was that he had neither the physical nor emotional strength to challenge a doctor who was determined to “fix” his worn-out heart.

The second bit of fine print, a bit more literally, is that he never wrote down his desire to let take nature take its inevitable course.  This matters, because the Supreme Court has ruled that, when you are not competent to make a decision yourself and you have not made your wishes known through some form of Advance Directive, your doctor can use his best judgment.  My father was “competent” in the sense that he could carry on a conversation or read the newspaper, but neither he nor my mother were able to challenge his doctor on a complex medical and in a highly emotional environment.

There are rarely any adverse consequences for a doctor or a hospital that ignores the Advance Directive of non-competent patient, particularly if you don’t have a surrogate—a spouse, a child, a friend, a lawyer—who is legally empowered to advocate for your wishes through a Health Power of Attorney.  Even then, the doctor or hospital can refuse to honor your wishes; in such cases, your advocate may have to find a new doctor or move you to another hospital … heart-rending choices when you are critically or terminally ill.

And then, of course, you need to be sure that your legal advocate agrees with your wishes. I continually run into people who’ve appointed a legal surrogate, but not discussed their health care preferences … all too common when your surrogate is a family member emotionally geared to doing everything possible to keep you alive.

Then too, the Advance Directive needs to be precise enough to capture your situation.  Think, for example, about having an automobile accident and needing to be put on a ventilator. Would your answer be different if you were age 40 and healthy than if you were 90 with advanced Alzheimer’s? If you haven’t thought through and documented the kind of care you want under various scenarios, you are vulnerable to the preferences of whatever doctor or hospital is overseeing your care.

There are other health care documents you may be aware of: Do Not Resuscitate Orders (DNR)  … Physician Orders for Life Sustaining Treatment (POLST) … Fives Wishes … a Living Will.  They don’t all serve the same purpose, and many are subject to state law (which can vary dramatically from one state to another).  They all have fine print you need to read.

If you want to get up to speed, I highly recommend The Practical Guide to Health Care Advance Directives by Jo Klein Cebuhar.  It is delightfully readable, but is jam-packed with helpful hints for getting the fine print right.


  1. My comment relates to something no where near the gravity of Advance Directives and life/death issues, but it does speak to health care in general. Last week I had my yearly physical and suggested to the nurse that I probably didn’t need a Pap Smear done because I had had one in the last year or so (nothing in writing here). Still, my doctor did the test though it may not be indicated for someone my age and with my medical history. He is erring on the side of caution. Besides, Medicare pays him for an annual test. Just saying . . .

    • Mary Gottschalk says

      Marian … I know exactly what you’re talking about … You could have refused, but it’s very hard when you’ve have a relationship with your physician and then don’t take his advice. Part of the problem is his concern about liability … part is that he probably gets paid by Medicare for doing it, so why not!


  2. I so relate to this subject, especially since my own interest in bioethics took a big leap when my mother, who had been in very good health, became suddenly ill at the age of 86. By the time she died, at age 91, I had become her caregiver. As the wife of a small-town physician, my mother worked tirelessly to help bring good health care to our little valley, and what happened to her at the end of her life still angers me. It was while I was researching my own book that I discovered your writing, and became a follower of your blog. It is comforting to know that thoughtful people are writing about and discussing these subjects.

    • Mary Gottschalk says

      Sara … I share your anger when I think about my own parents, as well as the increasing number of people I know whose parents have been subjected to utterly useless medical procedures at considerable in terms of both money and emotional trauma. I’m going to be doing a lot more on health care and bioethics in the next year or so, and would love your comments along the way.