HEALTH POLITICS: What Advance Planning is All About

Dr. Diane Meier, one of the nation's leading voices for palliative care writes about what really happens in end of life discussions on RWJF's User's Guide to the Health Reform Galaxy blog. Diane notes that "end of life" is a misnomer -- many people live for a number of years with chronic disease, and we don't really know when someone will bounce back from a crisis, when they will decline gradually, when they will die. It's a delicate conversation -- for which doctors currently are not well compensated. But it's a crucial conversation that can guide patients, doctors and families into making sure that people get the treatment they want when they can no longer speak for themselves. And if their wishes are for aggressive, do-everything-you can treatment, that too counts as an advanced directive.

My patients want to know that their goals, values and hopes will be the primary considerations when healthcare decisions need to be made. They are frustrated by how little time most of their doctors can devote to talking with them and how rushed these encounters have become. They hesitate to ask questions about their illness because they are afraid to take any extra time that might burden their busy doctor, who is always harried, always behind, and always has a waiting room full of other patients...

This is what these conversations are like in the real world of doctor and patient. So that the patient's voice and values remain front and center when serious medical problems arise, I ask them the following question: "Who would you trust to help me make health care decisions on your behalf if you were unable to make your own decisions? This person can be a family member but does not have to be, and they will only be asked to represent you if and when you are unable to represent yourself." Most of my patients appoint one or more of their children, or their spouse, but some prefer to spare their family this burden of responsibility and appoint a friend or other counselor.

Secondly, although most of us really do want all the facts about what is happening to our bodies, some of my patients prefer to sustain a certain level of denial. That's fine, but I need to know how they would like me to handle information and shared decision-making. I say, "Some of my patients like to know all the details about their medical condition and their treatment options, and others prefer a more general outline, or ask that I discuss treatment planning with a family member. Which kind of person are you?" Roughly 90 percent of my patients respond that they do want to know everything, but a substantial minority do not. If I try to force unwanted information on this group of patients, they will no longer trust me and are unlikely to feel safe in my care. Hence, I will honor their request that I confer with their family when medical decisions need to be made, though I will check in frequently to see if they are ready to learn more as time passes.

Lastly, I ask my patients one more, very important, question. "If you ever got so sick that your brain was permanently injured to the point where you could no longer recognize or interact with your loved ones -- the kind of condition that Terri Schiavo had or what typically happens in the late stages of Alzheimers' dementia -- in this situation some of my patients say they would want care focused only on assuring their comfort and not on prolonging their existence in this state; but others tell me they would want everything possible done to prolong their existence no matter what the quality of their mental functions or ability to connect with others. Which kind of person are you?"

Again, the clear majority opt for comfort measures when they reach this state of loss of self. But a consistent minority are either so fearful of death or so convinced that a miracle will restore them to health that they tell me to "do everything to keep me going, no matter what." Whatever they say, I write down in the medical record as a guide for when (not if) serious medical problems arise. The patient's wishes and goals are my guide as I work with other doctors and family members to try to come to the best plan of care. Whenever possible and with the patient's permission, we have these conversations together with family and surrogate decision makers. That way, when the family decision makers are faced with wrenching and painful medical choices for a very ill loved one, as they inevitably will, they know what the patient's wishes are, and they take great comfort in their ability to honor them.

...Of course, these conversations are not mandatory, but I have yet to encounter a patient who is not tremendously relieved by the chance to talk out some of their deepest worries and fears about what might happen to them in the future and how we will work together to face these situations. I have this kind of discussion with all my patients, early in my relationship with them, just as I discuss getting a flu shot, or wearing seat belts, or using sun block outside. It is a routine part of good primary care. It is not rationing. It is not euthanasia. It is not a death panel. These are outright lies.