No one wants to die alone in a nursing home or with his final wishes drowned out by the technological frenzy of an intensive care unit. And as Ira Byock sees it, no one should have to do so. The director of palliative medicine at Dartmouth-Hitchcock Medical Center and a professor at Dartmouth Medical School, Byock believes we can do better, as he explains in his new book, The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life.
Q. Your book makes a strong case that we — patients, friends and family of patients, health care providers, politicians — all need to change how we deal with the end of life.
A. We’ve got to start talking honestly about this inherently difficult time. If the medical profession can’t serve people well throughout the entire continuum of life, we’re failing. And at the moment, our health care system is failing our patients and their families, at the end. As citizens, and as consumers of health care, we’ve got to insist that standards become not just better, but dramatically better.
Q. What would you change first?
A. All physicians should be competent in the basics of pain management. Today we’re still graduating new physicians and giving them licenses to practice when studies show that they do not have the basic tools to evaluate and treat people’s pain.
Q. If I’m seriously ill, how do I know I’m getting the best possible treatment for pain?
A. If you’re still in pain despite the treatment you’re getting, get another opinion. Not just about the disease, but about the pain treatment. Doctors are well meaning, and in general well trained. But most have not been well trained in pain management, and not everybody’s pain is easy to manage. Ask tough questions. Don’t be satisfied with suffering.
Q. But you believe that our doctors should go beyond treating our diseases and our pain — that doctors should help us cope with what’s happening to us?
A. Part of being a good doctor is teaching. It’s communicating well, it’s allowing people to understand what’s happening within their own bodies, what the treatments entail. This is not ancillary. This is part of real doctoring. Medical education must incorporate the end of life as a basic, a core set of knowledge and skills. And we should test for it, and not give doctors licenses to practice if they can’t at least do the basics.
Q. We teach doctors to care for pregnant women and deliver babies.
A. Every medical student goes through something like 300 hours of obstetrics. And yet when it comes to the end of life we give them a few lectures. You know, only 50 percent of the population is at risk for an obstetrical experience, but studies continue to show that 100 percent of Americans will eventually die.
Q. But isn’t there’s a political aspect to this challenge?
A. Medicare must stop requiring people who are on the brink of death to give up access to potentially life-extending treatments as the price of access to the comprehensive care for their quality of life that hospice programs can provide.
Q. Of course, planning for the inevitable isn’t exactly the most rousing stump speech for a politician ….
A. We get paralyzed because we can’t talk about it. Politicians treat it like it’s radioactive. So we end up with people shouting at each other about “assisted suicide” on one hand, or “rationing care” and “killing granny” on the other. In a democracy, it’s really hard to effect major social change when there’s such polarized yelling. And yet, there’s so much we agree on.
Q. Such as?
A. We agree that doctors are not being well trained, that insurance companies shouldn’t force people to give up any chance of living longer in order to get hospice care or palliative care. And we’re paying far too much, and getting such bad care in return. It’s zany.
Q. The business of health care can seem to pit patients and doctors against each other, can’t it?
A. In short, yes. We work in a system that’s broken. It only sees diagnoses and diseases, and is almost blind to the people who have them. It only pays for us to treat diseases, not to communicate with and spend time counseling and accompanying the patient. I understand how mistrust arises. But it is misfocused. It ought to be focused on the health care system that is really and truly broken.
Q. But not on doctors?
A. Doctors are not insensitive money-grubbers. The illness of our patients affects us, too. We get close to patients. Not every patient to the same degree. But we suffer when our patients suffer and we celebrate when they’re doing well.
Q. You’re not exempt from the struggle for good care, are you?
A. All of my friends who are doctors and nurses are also struggling with the health care system, with their parents’ care and with their parents’ physicians. I’ll be 61 when this book comes out. Those of us “of a certain age” should feel a special obligation to be active in advocating for improved care through the end of life. Not only for our own sakes, as we face the next chapters of our own lives, but also for our children’s sakes.
Q. Is the boomer generation especially well suited to taking on this kind of challenge?
A. We’ve always been ones to question authority, and to want the very best. That can serve us well if we’re savvy consumers, and really advocating for one another.
Q. We should make it easier for our kids to get good care for us?
A. It ought not be as hard for our children as it has been for us to take care of our parents. I hope my daughters can feel that their parents got the best care they could possibly provide, through the end of life. We’ve got work to do.
But we ought to insist upon it. We ought to insist not only that our doctors and the administrators of our health care organizations — the hospitals, the nursing homes — get with the program, but also, frankly, that our elected officials face this need squarely. Our leaders should know what is possible, and insist that nothing less than the best is provided to Americans as each of us faces the end of life.
Also of interest: Top 5 regrets of the dying. »
Lynne Warren is a writer and editor based in Maryland.