4. Your Decision Matters to Others
No man is an island entire of itself; every man is a piece of the continent, a part of the main . . . Any man’s death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee.
JOHN DONNE
For the moment, forget everything you’ve ever heard about right-to-die or right-to-life positions. Put aside the court rulings. Push out of your mind the tug-at-your-heart stories you’ve seen in the movies or read about online.
Now, with no one reading your thoughts, may I ask, “Do you know when it is right to die? For you? For your family?” Please, I realize this may not be a theoretical question for you. You may be one who could write a real-life tug-at-your-heart story. And you may have already made up your mind about how and when you want to die. Whatever your response, I want you to know that your decision matters.
It matters more than you realize.
Let me explain. Since at one time I served on a national council that drafted major civil rights legislation, my husband, Ken, then a high school government teacher, asked me to speak to his classes on the subject of legalizing euthanasia. This was well before California had legalized medically assisted death, but plenty of initiatives were testing the waters. Ken wanted me to talk to his students about the implications of a right-to-die law. The classroom was crowded with kids standing along the back and leaning against the chalkboards covering the walls.
I was surprised by how interested they were as I divulged my despair of earlier days. I admitted my relief that no right-to-die law existed when I was in the hospital and hooked up to machines. I then underscored how critical it was for every student to become informed and involved in shaping society’s response to the problem. Then I added, “What role do you think society should play in helping people decide when it is right to die?”
A few hands went up. I could tell by their answers that they felt society should take action to help hurting and dying people—some students insisting on life no matter how burdensome the treatment, and a few wanting to help by hurrying along the death process.
One student shared how his mother was getting demoralized by the burden of taking care of his sister with developmental delays. He felt society should, in his words, “do something.”
“Like what?” I playfully challenged.
“Like . . . I’m not sure, but society ought to get more involved in the lives of people like my mother.”
I glanced at Ken. He nodded, as if to give the go-ahead to take a free rein with this young man. “May I ask what you have done to get more involved?”
The student smiled and shrugged.
“How have you helped alleviate the burden? Have you taken your sister on an outing lately? Maybe to the beach?” I teased. “Have you offered to do some shopping for your mother? Maybe your mom wouldn’t be so demoralized, maybe she wouldn’t feel so stressed or burdened, if you rolled up your sleeves a little higher to help.”
A couple of his friends by the chalkboard laughed and threw wads of paper at him. “Okay, okay, I see your point,” he chuckled.
I smiled. “My point is this: Society is not a bunch of people way out there who sit around big tables and think up political trends or cultural drifts; society is you. Your actions, your decisions, matter. What you do or don’t do has a ripple effect on everyone around you. And on a smaller scale, your participation can even make a huge difference in what your family decides to do with your sister.”
The classroom fell silent, and I knew the lesson was being driven home. I paused, scanned the face of each student, and closed by saying, “You, my friends, are society.”
Your Point of View Matters
And that’s how much your point of view matters. You may be the one who fiercely advocates pulling the plug, or the one who fights to keep a heart pumping until the bitter end. Whichever it is, you must, in the words of John Donne, know this: no man is an island.
We are such private people. We would like to be able to make a life or death decision in a vacuum or even at an arm’s-length distance from others. But we can’t. Your point of view and how you act on it, let’s say as you lie in bed with a terminal illness, not only matters to you and your family; it matters to a wide network of friends and associates as well. In other words, to society. The cultural drift is channeled by your decision to either pull the plug or hold on to life.
In fact, will you permit me to get personal? If you can, dismiss your real-life circumstances for a moment. Let’s pretend you are in bed with a terminal illness, and doctors say you could live for another six months. Your pain can be effectively managed. And you have an opportunity to make a choice about medical treatment. You can decline treatment if you want—and you even live in a state whose laws permit you to request a medically assisted death. Your family says it’s up to you. I know it’s hard to pretend such an antiseptic situation, devoid of real grief and actual anguish, because distress would play a key role. But given this sterile scenario, what would you do? What would you say?
Are you one who might say, “It’s none of your business. I’ll control how and when I die, and what’s more, I feel no responsibility to society. I’m only responsible to myself and to those I love.”
I hear what you’re saying. But when people maintain that their death is their own business and the business of “those I love,” they do not consider the significance of their decision on the wider circle of life. A decision to cut life short, even if only a few months, does not stop with “those I love,” but affects a whole network of relationships: friends, former colleagues, teachers, distant family members, casual acquaintances, and even nurses and doctors who occasionally stop by your bedside.
Just what effect might your decision have? Your gutsy choice to face suffering head-on forces others around you to sit up and take notice. It’s called strengthening the character of a helping society. When people observe perseverance, endurance, and courage, their moral fiber is reinforced. Conversely, your choice to bow out of life can and does weaken the moral resolve of that same society.
Years after my hospitalization, my mother continued to receive letters from nurses, cafeteria workers, and a family whose daughter had suffered a severe brain injury and had been hooked up to machines two beds away from me in the intensive care unit. My parents made gutsy choices that involved facing suffering head-on. And the decisions they made regarding my care had a lasting impact on these people. And who knows what ripple effects have come from the choices they have made in the years since?
If you believe your decision is private and independent, think again. Your choice to speed up the dying process is like playing a delicate game of pick-up sticks. You carefully lift a stick, hoping not to disturb the intricate web. But just when you think you’ve succeeded, your independent action ends up jiggling the fragile balance and sending other sticks rolling.
And as the apostle Paul writes in Romans 14:7, “None of us lives for ourselves alone, and none of us dies for ourselves alone.”
You Have Your Rights . . . Sort Of
“But I have a right to decide what’s best for me,” you may say. “I’m entitled to exercise my independence. It’s fundamental to what this country is all about. Even the courts recognize my autonomy as a patient.”
True, because you are a mentally competent person, the judge would probably bang the gavel in your favor. Like you said, you have rights, and you may end up literally dying for them.
But like all other liberties, your choice is not absolute—no ifs, ands, or buts. Your self-determination to die has strings attached if it adversely affects the rights of others. That’s why more than half the states in our country have laws against aiding a person in suicide. Even states that have legalized physician-assisted suicide still have laws against just anyone assisting. And also, these laws insist—though not always followed in practice—that the patient be in the final six months of a terminal illness and be able to make the final action that brings about their death. Why all the legal safeguards? Think it through: if everybody ended their life as a solution to problems, the very fabric of our society would ultimately unravel, and with it all the other individual rights we enjoy.
Yes, you have a glistening right of privacy, as long as it does not overshadow the rights of others. But legalized euthanasia can seriously infringe on the rights of many physicians. You might want to exercise a right to die, but do you have the right to ask a physician, whose duty is to heal, to comply with your wishes or even to make a referral? No person, in the name of self-determination, should be able to oblige a doctor to prescribe a fatal dose when it goes against the physician’s oath to “do no harm.” Yet already we have seen lawsuits against doctors who refuse to assist in hastening a patient’s death. Or again, in death with dignity acts, there is no requirement that next of kin be notified before a person follows through on his or her plan to hasten death. Shouldn’t parents, a spouse, or children have the right to know before their loved one is beyond their reach?
But wait, it sounds a little like we’re trading baseball cards here.
Like, “My rights are more valuable than yours!”
“Oh, yeah? Well, my one right is worth more than your three combined!”
Our rights are not things that can be exchanged, bargained over, or transferred like property. Essentially, rights are moral claims to be recognized by law, not things to be traded. And moral claims have to take into account responsibility, limits on freedom, and ethical standards that reflect the good of the entire community.
When we clamor about the sanctity of our individual rights, we may be reinforcing an all-too-human failing, namely, the tendency to place ourselves at the center of the moral universe. If taken to the extreme, clamor over individual rights can lead to one indignation after another about the inherent limitations of society, and we will never be satisfied.
The fact is, true rights are based in God’s moral law. Proverbs 31:8–9 reads, “Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy.” But take God out of the picture, and rights become nothing more than people’s willful determinations dressed up in the language of “rights” to give them a showy kind of dignity. Then the exercise of rights becomes nothing more than a national competition between who is more victimized than whom.
As I shared in my husband’s government class, “You, my friend, are society.” So welcome to the club of community, and even though some may try to drown out other styles of discourse with shouts about personal rights, the community may have a thing or two to say, and it may say it a lot louder. After all, community can only progress when its individuals exercise higher moral choices, and community is sacrificed when individuals choose with only themselves in mind.
Legalized Euthanasia: A Good Law for a Better Society?
When I first wrote When Is It Right to Die? legalization of assisted suicide had not yet come to any modern country. Now that laws such as Oregon’s Death with Dignity Act have been on the books for two decades, we have the ability to reflect on the reasons patients have chosen to end their lives. When prescribing doctors fill out a final report after an assisted suicide, the top four reasons given for the request for assisted suicide are these:
• decreasing ability to participate in activities that made life enjoyable (96.2 percent)
• loss of autonomy (92.4 percent)
• loss of dignity (75.4 percent)
• a sense of being a burden (48.1 percent)
These have nothing to do with pain from a terminal disease. Rather, these are psychological issues that can be effectively treated. Yet these laws do not even require that psychological support services be provided to alleviate these problems. All too often, when the medical condition is fraught with challenges, people—even doctors—tend to think, You’re better off dead than disabled.
Like in the story of Brittany Maynard. When Brittany, a twenty-nine-year-old woman, was diagnosed with a glioblastoma brain tumor and given only six months to live, she felt she could not face the pain and humiliation of a difficult death. She moved from her home in California to Oregon so she could take her own life under Oregon’s Death with Dignity Act. Brittany spoke of her choice as a highly personal and private one, but it was not. During her very public last few months, her journey was broadcast through her own personal Facebook page and through interviews and articles in major news outlets. She campaigned extensively to have medically assisted suicide legalized in her home state, and shortly after her death in November 2014, California passed the End of Life Option Act. This act was touted as giving people choice and control at the end of life. Yet experience with euthanasia laws elsewhere proves otherwise.
So what has happened in the twenty years since physician-assisted suicide became legal in the United States? What has happened since countries like Belgium took a strong stance for euthanasia?
Legalized euthanasia results in physicians being cast in the role of killer, not healer. For some twenty-four hundred years, people who are terminally ill, dying, or disabled have had the assurance that doctors operate under the Hippocratic Oath, an oath to heal them, not kill them. But fewer and fewer medical schools consider this classic oath relevant. The oath used by Loma Linda University School of Medicine, for instance—a school committed to “training skilled medical professionals with a commitment to Christian service”—lists no objections to abortion and euthanasia, as contained in the original Hippocratic Oath. Other medical schools now allow students to draft their own oaths to reflect whatever modern values they wish to uphold.
To change the oath is one thing, but to say “role of killer”? Isn’t that a little much? Scott and Sheryl Crosier’s experience in Missouri suggests otherwise. Their son Simon was born with Trisomy 18 and apnea. Only after Simon was denied resuscitation and died did they learn that Simon’s pediatrician had placed a DNR (Do Not Resuscitate) in his file. A survey of neonatal-perinatal pediatricians found that 25 percent would feel it permissible to place a DNAR (Do Not Attempt Resuscitation) in a patient’s file without a parent’s consent, based on long-term prospects for poor quality of life. I find it no surprise that doctors who have joined the medical field within the last fifteen years are more comfortable issuing such a DNAR than doctors with more than fifteen years of experience.
In Belgium, during the year 2013, doctors intentionally killed approximately one thousand people without their consent. While the law there requires doctors to report the deaths they facilitate, there have been no penalties for doctors who openly admit to killing more patients than they report.
Legalized euthanasia results in less care for the dying. Barbara Wagner’s lung cancer had come back. She had fought it off once before with her insurance through Oregon’s health plan, but the treatment her doctor prescribed this time was different. And expensive—$4,000 a month. It was hard enough to process the grim news the cancer was back, and then Barbara got the letter from the state’s health plan. The treatment wasn’t covered, but it would cover the drugs necessary for a physician-assisted death. After all, those drugs only cost about $50.
What about that is a dignified death? Rather than allowing doctors to provide better care, legalized euthanasia gives permission to suggest to hurting individuals that society is eager to see their death. It’s a matter of economics. Euthanasia is extraordinarily cheap when compared to the costs of humane chronic and terminal care.
Legalized euthanasia establishes a fundamental right to die. Even with supposed safeguards written into physician-assisted suicide legislation, these laws are stacked against the patient and apply to people with years, even decades, to live. Doctors make the determination that a person is terminally ill, and doctors are often wrong in predicting life expectancy. Brittany Maynard took her fatal dose a full month after the six months her doctors predicted she had remaining. During her last week and a half of life, she still felt well enough to travel from her home to visit the Grand Canyon. How much longer might she have lived, how many other moments of beauty could she have experienced, if she had not taken her own life?
Ms. Maynard is not alone in this. In the official language of Oregon’s Death with Dignity Act, doctors must believe a person has only six months left to live before the person is eligible for medical aid-in-dying. Of the 859 individuals who died from ingesting a lethal prescription in Oregon during the years 1998–2014, some patients lived more than two and a half years after first requesting a fatal dose.
And about that definition of terminal illness . . . an eighteen-year-old with insulin-dependent diabetes is eligible for assisted suicide. Why? The definition includes any condition that would be fatal without treatment. Without insulin injections, a teen’s life expectancy with Type 1 diabetes is frightfully brief. But insulin pumps and blood sugar monitoring have become so much easier to use in recent years, and now the life expectancy of an insulin-dependent person is age sixty-six for men and sixty-eight for women. Yet legalized aid-in-dying measures, as written in California and Oregon, make it possible for an eighteen-year-old, perhaps depressed by a recent diagnosis or even a breakup, to request—and receive—medical assistance for committing suicide.
The United States Constitution affirms that fundamental rights cannot be limited to any one group, such as the terminally ill. While we may soon see a trend of nonterminally ill people—clinically depressed persons, children with cystic fibrosis, nursing home residents, people with HIV/AIDS, and those who want to avoid large medical bills—demanding equal rights access to medically assisted suicide, already the “right” has been extended to some of these individuals without any action from the courts.
Michael Freeland struggled with depression since his mother’s suicide when he was a young man. Over the next forty years, Michael’s community and medical care team worked together to help him overcome the suicidal thoughts that would hit him. The legalization of physician-assisted suicide changed that. Shortly after he was diagnosed with lung cancer, he again expressed his desire to “end it all.” This time, though, he called the politically active group Compassion in Dying Federation, which shepherds more than 75 percent of assisted suicides in the state of Oregon. And Michael, known for his long history of suicidal thoughts, received a prescription for fatal drugs without any mental health evaluation. Over the next months and years, he received, on the one hand, cancer treatment, pain management, social services, counseling, and in-home care and, on the other hand, disinterested prompting and coaching to follow through with his suicidal thoughts. How is that compassion in dying?
Legalized euthanasia reveals that the character of a helping society is beginning to disintegrate. Marc and Eddy Verbessem had lived their entire lives together. Forty-six-year-old twins, they shared an apartment and a career as cobblers in Belgium. They also shared deafness and approaching blindness. The encroaching physical darkness seemed too much to bear, and Belgium is one of a handful of countries where nonterminally ill individuals can openly request, and be granted, assistance in dying. So these brothers sought out a doctor who would give them both lethal injections. Sadly, this doctor found it far easier to kill than to cure, or even care. What might have happened if Marc and Eddy had received a different kind of help? Could their story have rivaled the success stories that come out of the Helen Keller National Center for Deaf-Blind Youths and Adults?
Around the world, people with disabilities are reporting acts of disablism—harmful discrimination against people with disabilities and outright attacks. Society assigns no positive value to suffering and is becoming more and more oriented toward a culture of comfort. Without apology, people with disabilities have been told, “I’d rather die than be disabled like you.” People in need of financial assistance because of a disability have been called out through hate speech suggesting that such individuals are a “threat to the republic” and lazy. Even more disheartening, violent crimes against persons with disability are at least twice the number of crimes against persons without disability.
Legalized euthanasia broadens the “right to die” to a right to be killed. In the fall of 2015, forty-six-year-old Chris Dunn was hospitalized due to a mass on his pancreas. Sadly, there was nothing the hospital’s medical team could do to cure him. But that was not the end of the nightmare for Chris and his loved ones. The hospital staff told his mother they wanted to turn off his life support and administer a drug that would end Chris’s life in three to five minutes. This was not a case of concerned individuals arguing about what the patient would have wanted. Chris was fully conscious and able to communicate his desires—and he wanted to live. Texas law allows health care providers to remove life-sustaining treatment from a patient, even when doing so overrides the patient’s desire and right to live. Chris’s family took the issue to the courts, but Chris died of natural causes before a decision could be reached. How could this happen? Chris was uninsured. The economic burden of his care seemed to justify his murder.
And what of other vulnerable people, such as those who are poor or senile?
Kate Cheney began showing signs of dementia. It wasn’t surprising, as she had reached the ripe old age of eighty-five. She then was diagnosed with terminal cancer. Her personal physician refused to write her a prescription for a lethal dose. A psychiatrist concluded that Kate wasn’t even asking for one; it seemed her daughter was the one pushing for it. Finally, a prescribing physician agreed to write Kate the prescription. A month went by, and then her daughter needed a break from caregiving, so Kate spent a week in a nursing home. The night she returned home, with the help of her daughter and family, she swallowed the prescription drugs that killed her.
Can we even know what Kate’s mental state was the night of her death? The only witnesses to her death were the same family members suspected to have coached her through her request for the lethal prescription. Even aside from the concern of lucidity and the question of who really wanted this option, could she simply have been depressed after a week in the care of strangers, only to return home to the sad truth that her daughter was not up to the task of caring for her long term?
Perhaps you think these are just isolated incidences, mere bureaucratic mistakes. No one intends for this blatant disregard for a person’s right to life to happen. The laws spelling out physician-assisted suicide just apply to those who are terminally ill and want to hasten death.
Not necessarily. I’m not being an alarmist. Just look at Nancy Fitzmaurice, a twelve-year-old girl with significant disabilities in the United Kingdom whose mother successfully petitioned the judge to allow her to starve to death, even though at the time of the judge’s ruling, UK laws prohibited assisted suicide. Many states in the US prohibit parental access to the health records of twelve-year-old children, citing the adolescent’s right to privacy and autonomy regarding health care decisions. Yet for Nancy, it was just assumed she would want death hastened.
Would we dare assume the same of Carol Walters?
Dear Joni,
My name is Carol Walters. I was born with cerebral palsy. I walk with a limp, and I can use my hands, but I have poor control.
I was thinking how I don’t think a person with a disability should take his or her life any more than anyone else should. I feel we are here to live our lives to contribute to our place where we live. Everyone has something to offer.
I have a part-time job at city hall in my town. At work I am known as Smiley. I clean up the community building, and I sweep walks. I feel God has put me at that job for a reason. I think that reason is to help people realize I can live a full and happy life the way I am.
I do have moments feeling sorry for myself, and there are times I wish God would make me normal. I talk to my mom, and she helps me see that I have many blessings.
Love,
Carol Walters
Questions for Discussion and Reflection
No Man Is an Island
Helen is a forty-three-year-old woman with cancer. Though her cancer was relatively mild for some time, her condition has rapidly worsened. She has had several bouts of depression. Her three kids have handled the situation surprisingly well, but it is beginning to wear on them and on her husband. She has gone through several kinds of treatments. The latest report from the doctor indicated she is a candidate for a bone-marrow transplant. Helen does not want to have the transplant done.
1. Who would be affected by Helen’s decision in this scenario? Are there others who would be affected by her decision who are not referred to in the scenario?
2. If Helen did not have the transplant, what impact would it have on the family? How do you think each would respond?
3. Helen is a devoted mother. It’s hard to think she wouldn’t consider the impact on her family. Assuming she has thought about the impact, what conclusions do you think she came to that led her to believe that trying the transplant was not worth it? Here are some examples:
• “My family needs to get on with their life. This is depressing them, and my marriage could fall apart.”
• “We can’t afford the surgery. College bills are coming in just a few years.”
• “I’ll take my chances without the transplant.”
Given Helen’s reasons, do you agree or disagree with her?