As a physician, I have been asked repeatedly how I feel about proposed health care reform and the raging debate. OK, like most people, I haven’t read the proposed bills, but I have been intrigued by the discussion of “death panels” and end-of-life counseling. These are really unpleasant topics. Most of us just want to live a full life until one day at the age of 95 we are at the local karaoke establishment belting out our favorite golden oldie (which for me would be “Livin’ On a Prayer” by Bon Jovi) and keel over dead. No pain. No long, tortuous dwindling of quality of life, no recognition of immediate impending mortality. To say it rarely happens that way is an understatement. To act like we don’t realize this fact is a testament to the strength of denial in preserving the human psyche. Few can really get their brains around the reality of aging and the slow march toward death most of us will endure.
At some point most families are faced with determining if the quality of a loved one’s life is worth living. Hopefully, they are trying to determine what the patient would want. And certainly, “quality of life” is about as subjective as it can get. As a physician, I cannot make a judgment about what quality of life is “worth living” for individual people. For some, the mere opportunity for another shared moment with a grandchild or spouse is enough to keep fighting, even in the face of pain, indignity and mental entrapment in a relentless physical prison. In medical school, I cared for a young man with severe mental retardation and cerebral palsy who had contracted a resistant case of pneumonia. He displayed no meaningful actions, no facial expressions or motion that would indicate any level of human understanding. Yet, his parents visited daily and were comforted by involuntary movements they called “smiles.” Feeding tubes, constant nursing care, antibiotic after antibiotic, thousands and thousands of dollars. A young doctor working with me, a medical resident, reached a breaking point one day after a long night in the hospital and some 30 hours with no sleep.
“What are we doing?!” he cried.
“We’re taking care of the patient,” responded the senior resident.
“That’s not our judgment to make,” the senior resident said, “we don’t decide that someone’s current state is not worth living. That is for his family to decide. We take care of the patient.”
I have taken that to heart over the years. I have given quality care to the severely disabled and utterly incapacitated. I have treated prisoners, homeless crack addicts, child molesters, fellow physicians, and ministers–many in the last days of their lives. I’ve tried to treat them all the same. I feel that when a person cannot speak for him-or herself the best people to make decisions are their closest family members. But I know these families turn to us for help. They turn to doctors and ask for a different kind of care: the care that guides families through difficult decisions. Doctors should not judge which patients have enough life quality to warrant health care dollars, but we are the ones who know when the steps are likely to be futile. We know when it’s over. And this is the time that families want and need our judgment.
We do not always do this well. Part of the reason is that this is thedistasteful part of our job. Human mortality has beaten us. We’ve given someone all that modern medicine has to offer, and yet we must admit it’s not enough. We must tell the family it’s over. These painful, gut-wrenching conversations invoke dread in our hearts.
What is the other reason doctors are afraid of these conversations? We fear someone in the family will accuse us of not caring, not trying, or of being incompetent or negligent. They might sue us. So we let things continue when we shouldn’t. We order more tests when we should be ordering less. We keep the tubes and the oxygen flowing when we should be breathing truth and dosing reality to families. We let one unreasonable relative waltz in and dictate continuing a full court press because we fear litigation. Why is this fear so compelling? We have malpractice insurance, right? Insurance will not protect our good name. Insurance is not a magic sleeping pill or stress reliever when the wheels of “justice” start dragging us through the tortuous trail of a lawsuit. What if we become overwhelmed and decide to settle? We are forced to admit negligence even if there was none. And what if we take it to trial? At a minimum we face public humiliation at the hands of lawyers skilled in painting doctors as villains. And finally, what if a jury decides upon an award that is more than our insurance coverage will pay. We fear for our future and that of our families. We fear losing everything we’ve worked for. Trust me when I tell you that no living will drawn up by the patient (at an end of life counseling visit years earlier) is going to stop a physician when a family member wants to do “everything possible.” What would you do?
I know that “death panels” were never in the health care reform bills, and I guess provisions for “end of life” counseling are not anymore either. This is all really irrelevant because there is another provision that is not in any of the bills: tort reform. We could do a tremendous service to patients and their families if we refuse to unleash disgusting and painful medical interventions in a futile effort to continue a life that is already over. We could also save a lot of money.The first step is to release doctors from fear of litigation, and Americans should be asking our legislators why this isn’t even being discussed. Maybe because physicians aren’t organizing angry protests to tour the country.
Maybe we should.
Shari S. Phillips, M.D.