"Full-scale arguments is putting it mildly. I've seen warfare," Stanislo says. "It's one child, usually the one that lives in California, that wants a parent to hang on. The daughter that's been doing everything day to day is saying, 'It's her time.' "
It's a gut-wrenching decision, but easily avoided.
By creating an advance directive, one avoids putting loved ones in such a painful position and affords family members some peace of mind by knowing they are adhering to the sick person's wishes.
An advance directive provides specific information about medical treatment and related wishes of the individual drafting it should he lose the capacity to make such decisions on his own. Often, it is used for end-of-life decisions, but also can be used in cases of mental illness. A living will is a form of an advance directive.
The case of Terri Schiavo — who fell, suffered brain damage and lived 15 years in a vegetative state, surviving on a feeding tube before dying in 2005 (her husband and parents waged a court battle over her right to die) — sparked much discussion across the nation about advance directives. Her case, however, didn't get most people to create their own, according to area
"I think there is a portion of the population that feels very strongly about them and have already written them. They are the minority," says Marty Knutsen, vice president of corporate compliance at Stamford Hospital. "The major reason for doing so is to help your family if they are put in the position of having to make decisions on your behalf. It's incredibly valuable to your family to know what you have wanted."
Advance directive decisions can include whether to resuscitate, keep someone on a respirator, accept blood donation, or use dialysis or a feeding tube; and state wishes about organ donation.
Stanislo estimates that 10 percent to 15 percent of patients have made advance directives. "Most know that it exists. They may not know the details of it but they know it exists but they never inquired."
Knutsen says people who create advance directives feel strongly about one matter or another. "The majority of people seem to not want something," she says. "Resuscitation, ventilator, feeding tubes through the nose or abdomen. Those two issues — assisted breathing and assisted feeding — are two that people have strong views about."
Quality of life is at the core of most discussions about ending or prolonging a life. Will additional treatment really help a patient beat an aggressive and advanced cancer? Is it possible for someone to come out of a coma? Does someone in her 90s have the strength to recover from a stroke?
"It's hard to tell what intensive care will do," Stanislo says. "Most people feel that if there's going to be a return to some sort of quality of life, if we can have part of that back, then it's worth it to put them on a ventilator. If a certain amount of time passes and it appears that this is futile, they want to let that person pass. We feel that way, too. Just because a ventilator is there doesn't mean it can't be a detriment to somebody." Suzanne Horn of Norwalk became aware of advance directives through her parents. Her father died of pancreatic cancer and was in a hospice residence for a day; her mother had a recurrence of breast cancer that spread to the lungs 18 years later. She was in hospice for seven weeks before she died. Neither wanted the inevitable prolonged and had declared as much in writing.
"This was in part by seeing my grandfather die a slow death. They felt that when it's time to die, you die in dignity. Dying in dignity was the essence of their request," Horn says. "They didn't want to linger and be put on machines for no good reason. Quality of life in my family is more important than quantity of life."
Suffice to say, Horn has created her own advance directive and is pretty sure her children have, too. Having retired from the health care industry 11/2 years ago, she looked for volunteer opportunities and has become a chaplain to help others and their families with their final days.
"If you're not living a meaningful life, you're not worth being here," Horn says. "The process of dying is harder than dying. I've seen human beings that were vegetables. We are kinder to animals than we are to human beings. Caring families continue to come visit, but nobody wants to see them this way. I don't want to live if I can't have quality of life. I don't want to be on machines or dialysis. I want to be left to die."
Says Stanislo: "This needs to be done before there is trauma because when there is trauma, nobody is thinking clearly; everyone is thinking very emotionally. You don't want to be making emotional decisions at that time. You need to have a designated person who knows how you feel about these subjects."
Stanislo says an important aspect of an advance directive is to designate someone to be aware of your wishes. "You may have a first cousin out in Omaha who doesn't have an inkling how you feel about these things, but you have someone next door who does," she says.
In addition to making a person's final wishes known, an advance directive serves as a balm for those left behind. In addition to avoiding internecine warfare, directives help in the processing of death.
"I've seen the result when there isn't any directive," Knutsen says. "Psychological research shows that family members who have to make these kinds of decisions and don't have direction, that it takes them much longer in the grieving process to get over the death because they feel somewhat responsible for it." SIDEBAR
Advance directives can be made by anyone 18 or older. In Connecticut, no specific form is required; your wishes simply need to be in writing, signed by two witnesses. No lawyers or notaries are needed. A variety of forms are available at any hospital as well as on the state attorney general's Web site. You also can create an advance directive by stating your wishes to your primary care physician.
The criteria for stating wishes addresses the following: Being able to understand the choice you're being asked to make and the ability to make and express a decision.
— Ray Hogan
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