As health care costs continue to rise and a growing number of Baby Boomers approach old age, end-of-life issues are looming larger than ever in the public debate. What is “the right to die”? How should we, as a society, approach questions of health care, treatment for the elderly, and euthanasia? The Patients Rights Council, formerly the International Task Force on Euthanasia and Assisted Suicide, is the nation’s oldest and largest organization devoted to protecting the rights of patients in all end-of-life situations, and so is on the front lines of the debate surrounding these issues. Margaret Cabaniss spoke with Jason Negri, the assistant director of the PRC, to get their take on the discussion — and what can be done to shape its future.
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Margaret Cabaniss: We hear so much about “the right to die” today; where does the Patients Rights Council stand on this issue? What rights are in jeopardy when we’re talking about end-of-life matters?
Jason Negri: It’s a misnomer to refer to doctor-prescribed suicide as “the right to die.” It sounds catchy, of course, and the other side uses it as a sound bite to garner support. When you come right down to it, we all have the right to die. The Patients Rights Council recognizes that anyone can legitimately refuse medical treatment; if a doctor ignores a patient’s wishes and provides him or her with medical treatment anyway, that doctor can be sued for battery.
But current discussions are not about an individual’s right to die; instead, the phrase is used by those who are specifically promoting death by prescription. We at the Patients Rights Council are concerned about allowing insurance companies and the government to get involved in a person’s end-of-life decisions — to offer death as a cost-effective treatment.
Think about what the long-term consequences of that would be: If we accept the argument that death by prescription is a civil right, then shouldn’t it be available to anyone at any time? Today, we’re only talking about people with a terminal illness, but why should it be limited to them? As we’ve seen with so many other things, what starts today as an individual right rapidly becomes an expectation for everyone.
Playing devil’s advocate for a minute: Couldn’t someone respond, “Well, no one is forcing you to choose this option; it’s a free choice, not an expectation”?
Well, consider a person who is battling severe illness or pain. People in these circumstances are already vulnerable to suggestion and pressure: In addition to their pain, uncertainty, or fear, many can also worry about becoming a “burden” to those they love. And, acting out of love, they might choose doctor-prescribed suicide to alleviate that burden — when in fact they could have recovered or enjoyed more good years with their families. Is that really an outcome we want for those we love the most? Is that choice really “free”? People need our compassion, support, and treatment — not our determination that their lives aren’t worth living.
And you believe the high cost of medical care factors into that determination?
Absolutely. Once the crime of doctor-prescribed suicide is transformed into an accepted medical treatment, it becomes just like any other medical treatment — with one huge difference: It’s now the cheapest option. We’re having an ongoing national discussion on health care that is driven by rising costs, particularly the high costs of treatment at the end of life. Already in Oregon and Washington, where death by prescription is an available “treatment,” there are examples of patients who have been explicitly told that their health insurance will not cover the cost of their life-saving medication, but it will cover a prescription for suicide. And leaders in the movement to legalize prescribed death have been saying for years that economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the mainstream of acceptable practice.
Doctor-prescribed suicide reduces the value of a life to a cost-benefit equation — and, like I said, pressure for those with terminal illnesses to just “get out of the way” and to “stop being a burden” on the rest of us is already huge. If doctor-prescribed suicide is not only accepted but suddenly also the cheapest option, the pressure to choose it will be overwhelming, especially to those already vulnerable.
Aside from putting pressure on the patient, what other dangers do you see inherent in legalizing euthanasia?
Well, death is final. For people battling illness, one day they may be ready to give up, and the next day they may be prepared to fight. This is just part of the human condition. Giving someone the legal equivalent of a loaded gun on a day when they’re depressed or in pain — like when they’ve just received a terminal diagnosis — is a very dangerous thing.
And, of course, people make mistakes, including doctors. Many of us probably know people who lived for five, eight, even ten years after they were told they had a terminal illness, and we’re grateful that they lived for so much longer. But on that day they received the terrible news, some of them might have wanted to end it all. Thankfully, the law prevented them from doing so with ease. What if they had had a doctor standing ready to prescribe death? What if family members had encouragingly nodded their understanding and assent, wanting to support them in their decision?
We can’t afford to make a mistake regarding death: There’s no reversing it.
Do you see people becoming more comfortable with doctor-prescribed suicide as a legitimate option?
Actually, for now, society seems to be trending in the other direction, based on the polls. Two years ago, when polled on this issue, there were more Americans who saw doctor-prescribed suicide as morally acceptable than there are today.
But it’s easy to see why some people favor it. Modern society has been conditioned to want the “quick solution”: When we’re sick, we pursue every medical option there is to keep us feeling young and healthy as long as possible, ignoring the fact that the human body isn’t designed to go on forever. At some point, things break down. But while we may acknowledge that in principle, we still want to feel as good as we did in our 20s. And when medicine can’t deliver on that false promise, it’s easy to throw up our hands and say, “Then I don’t want to live anymore!”
We’re also a very utilitarian culture, and very concerned with our self-image. So when we try to imagine not being able to do the simple things we enjoy now — or even perform basic functions like walking or bathing — we tend to think, “I wouldn’t want to live like that.” Doctor-prescribed suicide can seem like an “easy out.”
But it’s very common for people who cavalierly swore in their impregnable youth that they’d rather die if they could no longer do such-and-such to realize, when it actually happened to them, that they fiercely wanted to live. Humans have a remarkable ability to adapt to changing circumstances, and it’s dangerous to base public policy for everyone on how we feel in the prime of our health.
So what options are there between the extremes of doctor-prescribed suicide and just telling people to “suffer through it”?
Great question! Nobody should tell a patient to “suffer through it.” Catholics know that, in the Parable of the Good Samaritan, Christ didn’t tell his followers to ignore the man who was robbed, beaten, and left for dead on the highway. The judge and the Pharisee who passed him may have prayed for the poor man and might well have told him to “offer up” his sufferings. But the man who was praised in the parable is the one who actually went out of his way to help the victim and tried to alleviate his sufferings.
Experience shows that virtually everybody who expresses a desire to die actually wants to live, once you have addressed their problems. We need to offer proper medical responses and comfort care to those in need. Pain alleviation has made tremendous strides in the past few decades, such that no one should have to live in intractable pain. The Patients Rights Council has published a book called Power Over Pain, co-authored by a lawyer and a doctor who is board-certified in pain medicine. I highly recommend it to everyone.
What about before we reach that point? Is there anything people can do now to make sure their rights and wishes are respected in those situations?
I’d say, for anyone over the age of 18, make sure you have a well-drafted durable power of attorney for health care, which designates someone to make medical decisions on your behalf if you become unable to make those decisions on your own, either temporarily or permanently. It’s very important to note that this is not the same thing as a living will, which is a dangerous document, subject to interpretation by those who might not share your views and values or may not have your best interests in mind.
The Patients Rights Council has carefully crafted a durable power of attorney for health care called the Protective Medical Decisions Document (PMDD), with different versions available to comply with the various states’ laws. There is no charge for it, though we do ask for a small donation to offset printing and mailing costs.
The Patients Rights Council isn’t a Catholic organization, but obviously we share a common concern about a person’s right to life. What do you see as the best arguments against euthanasia that both religious and non-religious people can agree on?
We’ve discussed a lot of them already: the possibility of error, the reality of using doctor-prescribed suicide as a means of cutting costs, the pressure on those already vulnerable to get out of the way. From our experience, these are the most persuasive arguments for a lot of people. We need to remember that reasons grounded in Faith are important to those who are of that Faith — but our positions are well-grounded in the moral history of the Judeo-Christian tradition, and as such, our position is shared and supported by Catholics, Christians, Jews, Muslims, and people of different faiths, or of none. We’re talking about helping — not hurting — people, and that message transcends sectarian differences.