Working with advanced care scenarios

Knowing your health status today, it is possible for you to determine your goals for care. But what if your health status suddenly changes—you get into a devas­tating accident or you suffer a massive stroke? Many states' living wills present several scenarios, then ask what types of care you would want in those situations if you were unable to make and voice your own deci­sions. Here are four scenarios often used:

1. You are likely to die within a short time, and organ-sustaining treatments would, at best, delay but not prevent death.
2. You have permanent and severe brain damage with no known hope of recovery, and organ-sustaining treatments would, at most, delay death.
3.  You have brain damage and are in a coma from which you are not expected to awaken or recover, and organ-sustaining treatments would, at best, delay death.
4.  You have reached an "end-stage condition" and your health is so poor you cannot mentally or physically care for yourself, and organ-sustaining treatments would, at most, delay death.

It is crucial to be aware that in all of these sce­narios, the intent of organ-sustaining treatment is to prolong life, but it doesn't always work (and especially not in scenario 4).

The choices for care range from full-court press— that is, every treatment intended to keep you alive is offered, including CPR, ventilation, hemodialysis, artificial feeding, hydration, and others as needed—to choosing selectively among these options.

Many experts in the field are wary of using sce­narios such as these in living wills. Why? They are too simplistic. Life rarely falls so neatly into place, and real medical situations may be much more complex. It's impossible to predict what will happen and what new options for care will be available. And it's hard to know how you will feel about certain treatments and quality-of-life issues when actually facing them.

"Stay flexible," urges Charles P. Sabatino, director of the American Bar Association's Commission on Law and Aging and legal editor of this report. "Never say never. I see people redraw the lines all the time as qual­ity-of-life issues that seemed unacceptable in a state of health—being unable to feed or toilet themselves, for example—are reconsidered from a state of illness."

For this reason, it's good to frame your instruc­tions as guidance, not mandates. You can do that sim­ply by stating in the directive that the instructions given in the document are intended as guidance, and your agent has the authority to interpret or modify your instructions in order to carry out what he or she believes are your values and wishes. If you have a health care agent, make it clear to him or her that your wishes are to be treated as guidance, not binding instructions. Talk with your agent about conditions that you feel would make your quality of life unaccept­able, such as an inability to recognize family members or sustaining severe, irreversible brain damage.