Don’t worry, La Crosse, Wis. has this title locked up – more than 90 percent of the patients at its two medical centers have signed medical directives, explaining what types of care and treatment they want, or don’t want, at the end of their life.
Since the program started more than 15 years ago, La Crosse has become a model attracting attention from health care organizations around the world. Officials from the centers estimate that the program saves about $6,000 per patient in end of life care.
More important than the money saved and the documents signed are the conversations medical directives should inspire with spouses, children, parents and physicians so everyone understands what an individual wants.
Who should have a medical directive?
Katie Graf, case manager for social services at Ministry Door County Medical Center (MDCMC), says that everyone over the age of 18 should have a medical directive filled out. Door County residents should have them filed at the hospital, as well as have copies with the person they choose as an advocate and with their physician.
“You want someone you know to make those decisions for you, not the state,” said Graf. Close relatives may not always be the best choice, however, as you want someone who will do what you want, not what they decide they want because they find the decisions too hard.
“It’s important to appoint someone who will honor your wishes and not say ‘I think she meant to say, give it a try,’” Graf added. “Because once a patient is placed on a feeding tube or a breathing vent, it can be very difficult to reverse that decision, although physicians and hospital are better than they used to be.”
At the Good Samaritan Society – Scandia Village nursing home in Sister Bay, all incoming residents have to fill out an advanced directive, said Patti Fehl, social services director, or they may face the need to go through an expensive state guardianship process.
“Most people already have the documents in place,” she added.
Dr. John Beck, a retired physician who chairs the ethics committee at MDCMC, said that if patients have an advanced directive there is no reason for their cases to come up for review over issues of artificial life support.
Feeding tubes, which have caused problems in the past (think Terry Schiavo), are now more likely to be removed if a patient is not expected to recover. He divided feeding tubes into two categories – one to help a patient receive the nutrition he needs to recover from an illness or operation and the other long-term maintenance feeding tubes, which he said have very different ethical connotations.
“There were times when people were reluctant to place a short-term feeding tube with the idea that if the person didn’t do well you’d be faced with difficult issue of taking it out. Now that is less and less of a problem,” Beck said. With a medical directive, “those decisions are being discussed and made in advance.”
Types of Medical Directives
One health care power of attorney form is a multipage form called “Five Wishes” that walks an individual through questions about treatments, comfort care, and whether he or she wants people reading poetry or Biblical passages at the bedside.
The Five Wishes covers areas such as what types of life support, if any, are desired if a patient is near death; what to do in the event of a coma or permanent and severe brain damage; and what kinds of comfort the patient expects. Dr. Paul Broad, an internist at MDCMC, says the hospital has everyone who is admitted fill out one of the forms.
Graf encourages people to talk to a social worker, chaplain, or an attorney who understands medical directives. The forms require signatures by people who are not related to the individual covered; at the hospital only social workers and chaplains are authorized to sign.
The proxy takes effect after two physicians have declared the patient incapacitated. At that point the designated agent can review a patient’s health records – which are otherwise confidential under federal law – and make plans for care.
Robert Ross, a Sturgeon Bay attorney specializing in estate work and a member of the MDCMC’s ethics committee, prefers a form that makes the agent responsible immediately when an individual is incapable of making a decision.
“I have found that frequently two physicians are not available in the ER or at home, and then who can make decisions under the standard forms? This says that as long as the clients can make their decisions they always do,” he said.
Bypassing the state forms also allows the agent the choice of placing a person in assisted living, he added, while the state form only mentions a nursing home.
Graf suggests that Door County residents who head south for the winter also fill out forms in their second home state to ensure they meet the local legal requirements, and that their local doctor or hospital has the information.
The Benefits of Advanced Planning
Ross sums up the problem nicely, saying that medical technology has found new ways to prolong life faster than we have found the wisdom to decide when to use it.
Poor communication often leads to families not feeling comfortable with the decisions they make in the heat of the moment, then suffering from post traumatic stress disorder after a loved one has been allowed to die.
Having those important conversations prior to the time of need can make life much easier for those you love the most in the most difficult of times.
Next issue’s Pulse will continue the conversation about advanced medical directives, outlining some of the challenges faced by doctors and families, as well as touching on some of the recent mentions in the news.