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September 25, 2014

Emeritus faculty member prompts debate over the right to die

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In the Locust Grove Senior Care facility in West Mifflin, a few doors down from Emeritus Professor of Health Law Nathan Hershey’s room, a man shouts for help. He calls out every five seconds, forlornly, as if he were stranded on a mountaintop.

After an employee stops in his doorway to ask what can be done, then walks away — apparently, it’s no emergency — the man begins to shout again. Clearly his distress runs deeper than the moment’s need.

Nat Hershey’s daughter Madeleine shuts the door on the noise and offers a visitor water.

“Want to drink anything else?” says Nat Hershey, smiling. He is propped in bed in a T-shirt and shorts. Two liquor bottles sit next to his small sink. The single room, with its desk, table and chairs, is modestly decorated with family photos and other memorabilia. Nat’s golf bag is propped in the open closet. But he probably hasn’t golfed much lately. Nat Hershey has Alzheimer’s disease. And he says he wants to die, or at least be in charge of making that decision.

“I really never thought about the idea of it being an act of courage to wish to pass on,” he says. “At some point, life under bad conditions can occur to some people, and it’s something to avoid at all costs.

“You hear that guy yelling? I wonder how he feels? Right now, my concentration, to the extent I have it, is to avoid situations and encounters that will emphasize my lack of, I guess you’d call it control, over my future. In some respect, I’d like to be able to make the decision on my own as to when to cash in or pass out or whatever you’d like to call it.”

Madeleine is in the midst of re-reading her father the essay he published in the Post-Gazette a few weeks before, written with the help of an assistant. Hershey asks her to slow down at times. He is having some trouble catching the meaning of lines he himself penned.

“I cannot manage to die,” the piece was headlined:

I would prefer to bring my life to an end at a time of my choosing, but it appears that I am unable to do so without help, it began. I do not want to do it in a way that will bring possible penalty to anyone who would choose to cooperate with me … Due to both the progression of my Alzheimer’s and the permanent effects of a stroke, my capacity to plan and accomplish is severely inhibited. I rely on the help of my daughters … My intelligence and autonomy have been of utmost importance to me for almost all my life. […] To exist in such extreme dependence today is agonizing for me.

Despite his conditions, which include congestive heart failure and a bad heart valve, he is still in too good a shape at 84 to qualify for assistance in dying in the three U.S. states that offer aid to the terminally ill. In Washington, Oregon and Vermont, besides establishing residency, he would have to prove that he is likely to die in the next six months, and yet retains a sound mind. With Alzheimer’s, that may never be possible for Nat Hershey.

Live too long, lose your right to make a decision that will be honored, his article concluded.

Alan Meisel

Alan Meisel

Just two years ago this month, the Pitt School of Law held a symposium titled “There at the Creation: Nathan Hershey, the History of Health Law and Health Care Reform” to celebrate his role, beginning in 1956, in the creation of the field. Hershey had a central part in the Graduate School of Public Health’s Health Law Center, which undertook the first compilation of state laws governing hospitals. According to his law colleague Alan Meisel, who organized the symposium and has known Hershey since 1973, Nat Hershey was probably best known for his work in the field of hospital/physician relations and physician’s staff privileges.

Today, he doesn’t particularly feel like getting out of bed to talk.

But Nat and Madeleine Hershey speak dispassionately and without hesitation about his desire to leave this life. Madeleine recalls his lectures on euthanasia and talking to her father about his membership and donations to Compassion and Choices, once called the Hemlock Society, which works “to protect and expand options at the end of life,” its website says, including “aid in dying.”

“A person should be the master of his or her fate,” Nat Hershey says. “And if you’re not in a comfortable situation living, why is it in anybody’s business or control to keep you alive nonetheless?” He points out that prolonging life when that is not a person’s wish also can have tremendous financial costs to family and to the health care industry.

“Who is being harmed?” he says. “Why isn’t that your freedom? You can get married, divorced, all these things. Why can’t you decide you don’t want to live anymore and have all these burdens thrown at you to keep you alive?”

Seemingly still the professor, he is even better at arguing the devil’s advocate position. Should those who wish to die have a right to request aid from physicians? he asks. “There also needs to be some policy or program that indicates a person has reached this conclusion, understands enough about the situation and believes it is a decision he or she wants to achieve.”

Still, he adds, “some people would say, anyone who wants to do that is nuts. Who can you trust in those circumstances? If anyone can benefit from anyone dying early, a lot of people would say that was a fishy decision. The problem is, people may say things at the spur of the moment about something that may not be a very thoughtful decision. ‘I’d rather die than be married.’ The decision could be stupid. So I could see having the law say a decision to end one’s life can’t be followed until 90 days have elapsed …” And if the law requires a person to have less than six months to live, “who makes the decision that the person is terminally ill? It shouldn’t be a person who has anything to gain. It should be a neutral person.”

Madeleine pulls up a copy on her phone of her father’s living will declaration/advance medical directive. It instructs his family, doctors and “all those concerned with my care” to avoid a long slate of treatment measures, should he be “incapacitated/incompetent [and] in an end-stage (formerly ‘terminal’) medical condition or in a state of permanent unconsciousness, even if that shortens my life.” He requests only measures “to keep me comfortable and to relieve pain. …” Those measure may include “palliative/terminal sedation.”

Madeleine is designated his “surrogate” in medical decisions — she holds his power of attorney — and he requests to spend his last days at home, “if an undue burden is not imposed on my family.”

“We’ve done absolutely everything we can to have my dad’s wishes be present and fulfillable,” she says.

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That may not be enough, says Meisel, who is the Dickie, McCamey & Chilcote Professor of Bioethics and professor of law and psychiatry as well as the founder and director of the Center for Bioethics and Health Law.

“Whether or not your wishes are going to be honored is dependent on who has responsibility for your well being,” Meisel points out. If your last hours, days or weeks are in a nursing home, the staff likely will try to provide all possible treatment measures, or send you to a hospital. “Nobody wants you to die in a nursing home,” he says. In hospitals, the medical staff are somewhat more likely to follow your directives, while hospices are most willing to accede to the wishes of the dying.

Yet, if you are in failing health at home, your written, legal desires may not be granted, even if you have chosen to forgo medication or all food and water to passively end your life. Family members sometimes find it difficult to comply with such wishes. Dying at home also may require 24-hour supervision by non-family members, and hired help may not as readily honor a person’s last wishes.

“Some people are unwilling to help,” Meisel says. “Others are unwilling to sit by and watch their loved ones die of starvation. It’s not a quick process.” They may try to force food into the patient. To “seek the cooperation of other people … as a practical matter it’s not always easy to engineer.”

Pennsylvania state law makes it a criminal offense for one person to aid another in committing suicide “or essentially pressuring someone to commit suicide,” he explains.

Thus, in any situation in which a person dies by his own hand, “question one, is this suicide? It depends on how you seek to end your life. If you seek to end your life by ‘active’ means and you seek the aid of somebody to help you do that, that would implicate them in criminal activity.”

Meisel runs through several scenarios, many of which are not entirely clear under state law, he says. If you are a terminally ill person and ask a friend to shoot you, “that is probably worse than aiding suicide, that is probably murder.” Even asking to be given a gun has the same implications. Asking a friend to give you your pain medication bottle, for which you have a prescription, is “probably” still aiding suicide if the friend is aware of your immediate desires. But asking your friend to hand you the same bottle, when the friend doesn’t know your intentions: “That is probably not aiding suicide, even if you take an overdose.”

What if you tell your friend about your intentions to end your life, and your friend does nothing — doesn’t help, but doesn’t interfere? Even if the friend witnesses you pick up a gun and chooses at that moment not to jump between you and the bullet or grab the gun away, “this is not aiding suicide.”

The scenarios shift dramatically, however, if the other party is “the person who has legal responsibility for your well-being,” Meisel says. Standing by while another kills himself “could be aiding suicide.”

If you’re in a long-term care facility and an employee, such as a nurse, is involved in your death, “there is a higher degree of likelihood that that person could be liable for not intervening because that person has responsibility for and custody of the patient.”

However, if the responsible person is a spouse or child, and the dying person is home and merely explains his intentions, “I do not believe in that situation that individual has responsibility” for the death.

All of the above are examples of potential aid in “active” dying. There are other ways, usually called “passive” methods, for a person to fulfill end-of-life wishes, “although the line between the two is not always so bright,” Meisel allows.

Refusing medical treatment or food and water already are rights for patients in the U.S. Caretakers are not required to intervene and forcing food on a conscious person is the crime of battery.

Of course, Meisel adds, “this all assumes one has the legal decision-making capacity.” If a person is unconscious, they’ve entered Catch-22 territory: They may have decided already to end their lives to avoid suffering or living under certain conditions, but now they cannot make a legal decision and lack the capacity to act on that decision.

Even with other states considering legislation to join the three with aid-in-dying laws, there remains no federal constitutional right to end your life. The Supreme Court in 1997 ruled that such rights had been ceded to individual states to decide. The justices also felt that palliative care was helping enough individuals through the end of life.

“Although the court left open the possibility” of re-examining whether Americans really are getting the right care at the end of life, Meisel says.

One line of thought behind the court’s decision, he says, is that “if people are depressed, we can treat that, we can make them less miserable. We’ve got pain medication, we’ve got anti-depressants.”

But the No. 1 argument underlying the legal prohibition on suicide always has been theological, Meisel points out: that “one’s existence, in Christian thought, is in God’s hands.”

Those who oppose Nat Hershey’s viewpoint also often invoke slippery-slope arguments: Who is qualified to make the decision that a person may end his own life, and who is qualified to help carry out that decision? Such arguments lead to politicians conjuring the idea of government “death panels” giving thumbs up or down to the elderly, to evocations of the Nazis’ euthanizing those with birth defects, or to science-fiction scenarios from “Soylent Green” to today’s film “The Giver,” in which babies are chosen for elimination when they show undesirable personality traits, and the elderly are marched officiously to oblivion.

Meisel sees humanity headed in another direction. “Human beings are capable of drawing reasoned distinctions” between ethical and unethical decision making, he says. “Just because they have been abused by other societies in other times doesn’t mean there will be abuses in the future.”

Over last 40 years, he says, the law increasingly has recognized the right to refuse life-saving treatments, and doctors and nurses increasingly are willing to comply — and all of it has happened without widespread abuses.

Steven M. Albert

Steven M. Albert

Still, not everyone is prepared to take the steps Nat Hershey has advocated publicly, says Steven M. Albert, professor and chair of behavioral and community health sciences in the Graduate School of Public Health, whose specialties include the assessment of health outcomes in aging.

Dying, Albert says, “is a public health issue.” About 2.5 million people die in the U.S. every year. “The cause of death is increasingly listed as Alzheimer’s disease on death certificates,” if not always as the primary cause.

He calls today “the age of patient determination,” in which patients receiving diagnoses or treatment recommendations more often want to see the doctor’s evidence. “I remember, as a child, birth wasn’t something families would get involved in very much.” Nowadays, families are often witnesses or even participants in deliveries. “I wonder if death is now the same,” heading for an era in which families have more say in death decisions.

He points out that the three states’ aid-in-dying laws are “used very little” — last year by 71 people in Oregon and 119 in Washington, according to another advocacy group, Death With Dignity. Even among people who get prescriptions for sedatives, very few use them, he says, since more people may have the desire than can act on it.

Albert’s own research also shows that Hershey’s wish and willingness to end his life may be a minority position. Surveying 80 people in the last six months of life with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease), Albert found that “in the vast middle are people who don’t really have any opinion and don’t know what they want.” Only 10-20 percent want every measure possible to prolong life at any cost. The same proportion is at the other end of the spectrum, disliking disability enough to wish to end their lives.

Albert says he recognizes Hershey as one of the latter group: “I did get to talk to him over the years and this is very consistent with his personality … given his concern for autonomy. Those are some of the hardest cases, because here’s a guy who you can see that disability in itself is so objectionable to him that he doesn’t want to live.”

Overall, the desire to end their lives, among Albert’s research subjects, seems to be based more on an individual’s personality than on a disease’s progress: “There is a small group of people who make the rational decision that they don’t want to live like this. And that is why it is a difficult situation.

“Most of us agree that physicians should not be in the business of killing people,” he adds — that they should not be writing lethal prescriptions. But physicians who treat distress or pain know that medications for these symptoms can sometimes suppress breathing, and that people may use them to help themselves die.

Suppose Pennsylvania law allowed Hershey to receive a lethal amount of sedatives to put aside for some future moment, Albert speculates. “He might never use it. Just giving him that option is enough to give him encouragement.”

Albert believes that quality of life can continue past autonomy, even in an assisted living facility or nursing home. “But we don’t have therapies that will reverse the dementia.”

Meisel offers advice for those who share Nat Hershey’s viewpoint:

“First, while you have decision-making capacity, write in an advanced directive what you want and what you don’t want.”

Second, talk to family physicians and close family members about your desires. “In a state like Pennsylvania, if you’re not being kept alive by treatment, the only way to end your life legally is to stop eating and drinking.

“The other advice I would give is to try to stay out of a health care institution,” so family members can be involved most directly in end-of-life decisions.

Finally, he adds: “Don’t write articles about this and publish them in the newspaper, because if you die there is more likelihood to be an investigation” of family members’ roles.

Nat Hershey, of course, had worried about “possible penalty” to his loved ones in that very article. Today, in his senior-care facility, he seems unconcerned about possible penalties to himself from doing anything, except staying alive.

“I feel like I’ve had a complete life by my standards,” he says. “So I really don’t care. I’m not going to get a big emotional thrill about being alive 2,000 days further, so they can say ‘Nat Hershey lasted until 89.’ That is not a great achievement for me.

“How much burden does continued life put on a person? We really don’t question people: How long do you want to live?”

—Marty Levine

Filed under: Feature,Volume 47 Issue 3