Would you make a different decision about having a feeding tube if you'd been in a car accident than if you were faced with increasingly severe dementia?
On Jan. 1, the new Utah Advance Health Care Directive Act goes into effect as the tool to express personal choices regarding health care if you are unable to speak for yourself. Advocates for the bill, passed by the 2007 Legislature, say it greatly improves the likelihood an individual's preferences will be honored when it comes to health-care decisions.
Among other things, the act:
• Uses a single form instead of three.
• Lets you select "triggering conditions" for treatment or non-treatment choices.
• Lets you pick an agent to speak for you and gives that person more authority, although you can decide if that person must honor what you wrote or can make decisions based on the situation.
• Emphasizes your constitutional right to make your own decisions if you want, even if your doctor says you're not capable. Only a court can override that.
It does not require, as the current law does, that a person be "terminally ill or in a persistently vegetative state" before it takes effect. That's important, proponents say, because most conditions a person might have that call for a spokesman/decisionmaker may not meet that definition.
A health-care provider can withdraw from a case for "reasons of conscience." And those who follow the directive are protected from civil or criminal liability.
Individuals can pick and choose which parts of the form they want to fill out. It's easily changed or revoked, and if you can communicate, you can override it at will.
It's not easy to predict the future, as the instructions and forms booklet note. "Don't keep me alive on machines" may be what you want if you needed mechanical support such as a ventilator to keep you alive for the rest of your life. But if being on a ventilator for a few days would let you go home from the hospital, breathing on your own and as healthy as you were before you were hospitalized, you might want to be kept alive on machines until you are better," the guide says. "Some people live satisfying lives even when they depend on 'machines.'
"Advance health care planning is harder and more complicated than you may think." And, it adds, "written directions are usually worse decision-makers than an agent" because of that inability to predict the future. It's important, it says, to talk about different situations with the person you want to have as your agent.
The act is the result of hard work and collaboration by dozens of groups and individuals involved in aging and health-care issues and planning, said Maureen Henry, executive director of the Utah Commission on Aging.
Henry said that advances in medical technology have outpaced the old law's language. And disconnects between the legal and medical system, as well as the limited scope of the language in the old forms, are just some of the issues that begged for change.
This summer, in an explanation of the act for the Utah Bar Association, she noted a presumption by some health-care providers "that the mere existence of a living will meant that the individual wanted very limited or no care." Among the anecdotes, she said, were 'do not resuscitate' orders improperly placed in a patient's file because the individual said she had a living will; the withholding of antibiotics from a woman who was very sick with pneumonia, although they might have restored her to her former state of health. The "provider may simply assume that all living wills express a preference to forgo life-sustaining care."
The new form not only provides more choice, clearly spelled out, but also explains that you don't have to pick an agent or even fill out the form and no one can make you. If you want every measure available to prolong your life, you're free to choose that. The act also sets penalties for anyone who forges, alters or destroys an advanced health-care directive.More information, instructions and the form are available online at www.aging.utah.edu/directives.