Some recent news items have demonstrated how difficult end-of-life decisions can be.
Jahi McMath, of Oakland, was only 13 when she suffered complications after routine surgery related to sleep apnea, and was declared “brain dead” by doctors, indicating “complete cessation of brain activity.” She was placed on artificial life support, but her “life” wasn’t supported: Her body was merely kept breathing by machine. McMath’s parents wouldn’t accept the doctors’ verdict. As long as her heart was beating, they believed she was still alive, an argument many people support.
The parents’ very public fight with the hospital, which wouldn’t perform “unethical” medical procedures and life support on what they considered a dead person, finally led to a compromise: She was officially declared “dead.” Her body was then moved to another facility which agreed to continue the life support.
A second case involves Marlise Muñoz, of Fort Worth, Texas, who died after a possible blood clot—while she was 14 weeks pregnant.
According to one interpretation of Texas law, Muñoz cannot be removed from life support, although diagnosed as brain dead, because medical intervention is keeping her fetus alive. Her husband and her parents support terminating life support, and he is suing the hospital based on his legal right to act as a surrogate for medical decisions affecting his wife.
He claims they had many discussions about end-of-life choices (both are emergency medical personnel and well aware of the ramifications), and that she would not want her body artificially sustained, regardless of the pregnancy. The condition of the fetus is not clear; it may have sustained serious damage due to a lack of oxygen after Muñoz’s sudden illness.
The third article that brought this subject together for me concerned the death of Ariel Sharon, former prime minister of Israel, after spending over eight years in a “coma.” Although in a “vegetative” state—he apparently lacked consciousness or cognition—he still had some brain function. Sharon’s life was sustained at his family’s request until he died at the age of 85.
If you were in a coma, would you want your life to be sustained by machines, immobile in a hospital bed for eight years? If not, you’d better tell someone!
Carl Hiaasen, a Florida columnist, wrote after the highly publicized Terry Schiavo case, “…[I]f a reasonable amount of time passes—say (fill in the blank) months—and I fail to sit up and ask for a cold beer, it should be presumed that I won’t ever get better. When such a determination is reached, I hereby instruct my spouse, children and attending physicians to pull the plug, reel in the tubes and call it a day.”
John Wisor, of Palm Springs, is president of The Living End, a local nonprofit which focuses on end-of-life decision-making. (Full disclosure: I am a member of The Living End’s Board.) The organization is supporting a pending book on the subject, which I am writing.
“Our mission is to educate both professionals and the public regarding the importance of having discussions with loved ones about the choices one wants to make for treatment at the end of life,” Wisor says.
“This should not be a decision left to chance, or even to doctors. The right to refuse treatment has been affirmed as an individual right, and Congress passed a Patient Self-Determination Act in 1990 enshrining that right for every individual over age 18.
“This is one of the most personal choices one will ever make in one’s lifetime, and it is important to not only have the conversations, but also to put one’s wishes in a legally-binding writing and then ensure that they will be respected. We can help.”
According to California Healthcare Foundation’s extensive 2012 survey, as many as 60 percent of Californians say these decisions are “extremely important”—and yet 56 percent have never communicated their wishes to family or doctors. And while 82 percent say it is important to put their choices in writing, less than 25 percent have ever done so, in spite of free forms made available by the state.
“We recommend using the form Five Wishes,” says Wisor, because each state implemented the law with their own forms, and what works in one state might not work in another. Five Wishes forms are valid in 42 states.
“People have such difficulty having these discussions, and these forms include not only the legal decisions—like who you want to speak for you if you can’t speak for yourself, and what treatments you do or do not want—but also non-legally binding things that a stressed-out family might not consider.
“Even with written forms and clear communication, one’s own choices do not necessarily prevail, but without them, one is at the mercy of professionals or legislatures whose influence can overwhelm the situation.”
Anyone old enough to have experienced end-of-life situations knows how problematic they can be. I’ve seen my own share of horror stories. There was the drug-addict son who claimed to have his mother’s consent to act as her surrogate, and prevailed over other siblings who wanted their cancer-riddled mother to receive the most aggressive pain relief possible, even if it might hasten her death. He maintained they were trying to kill her. The hospital delayed for days until it became clear he did not have any legal authority. That family’s relationships never recovered.
Then there was the gay man whose family disowned him when he came out—and then his family overruled his long-time partner’s ability to act as his surrogate. There was no writing to validate his wishes.
I once knew an elderly couple who had discussed their preference for no extreme measures for many years, and even named each other as the surrogate for decision-making—but when push came to shove, the wife couldn’t bring herself to end life support for her husband, even when all hope was gone.
A recent effort, “Let’s Have Dinner and Talk About Death,” encourages discussions that help people plan for decisions that might need to be made.
As for me, I don’t want to be kept alive to make everyone else feel better if I can’t be an active participant. And I especially don’t want anyone to feel guilty about whatever decision is made—I want it to be my choice, not the courts’ choice, or the state’s choice, or even my family’s choice.
For heaven’s sake, and your own, talk about it!
To reach The Living End, email firstname.lastname@example.org.