By Evelyn Theiss
August 13, 2012
It’s never too early to think about the end of your life.
That’s the philosophy of Compassion & Choices, a national organization that was created in 2003, after the merger of what was once known as the Hemlock Society and a group called Compassion in Dying.
The question isn’t one of suicide, says Barbara Coombs Lee, president of the national group, which splits its headquarters between Portland, Ore., and Denver.
“It might just be about discontinuing extraordinary measures,” says Lee, who is based in Portland. “Having the conversation about what people want is what we help them with.”
Cleveland used to have its own chapter of Compassion & Choices, but its former volunteer leader recently retired.
The national chapter, however, offers extensive information on its website (compassionandchoices.org), including state-by-state versions of living wills. It also offers one-on-one counseling with trained volunteers, most of whom have professional experience in medicine or social work, by phone.
Dr. Stuart Youngner, chairman of Case Western Reserve University’s Department of Bioethics, says that while Compassion & Choices “might be sympathetic to physician-assisted suicide . . . their main thing is that people should have control.”
Physician-assisted suicide and outright euthanasia remain controversial issues for some in our country today, says Youngner. Yet the majority of people believe that a person has the right to refuse life-sustaining treatment and the right to insist that it stop if it’s been started already.
Youngner, an expert on end-of-life issues, says that people who want more control over how they die don’t usually want it because of pain. “It’s because they don’t want to exist as they are existing, even if their pain is controlled,” he says. “We see this especially in the upper-middle class. They are used to being in control of their lives, and to making decisions.
“One of the arguments against physician-assisted suicide and euthanasia has been that it will [disproportionately] encourage poor people to want it, and that has not been the case.”
Just because you don’t have access, or the means, to make the end of your life more comfortable doesn’t mean that you want to hasten the end.
We talked with Compassion & Choices’ Combs Lee about the mission of her organization and how it prompts people to begin thinking and talking with family members about how they want the end of their lives to unfold.
Combs Lee was a nurse and physician’s assistant for 25 years before starting a career in law and health policy. She is also a lawyer. She became the president of Compassion in Dying in 1996 and remained in the post of president after the merger.
What inspired you to get into this field?
I came to the issue in 1990 when I was serving in a staff position in the Oregon State Senate. Frank Roberts, a senator and a person of enormous stature and respect, the conscience of the Senate, was trying to get death [with] dignity legislation passed. He was dying of prostate cancer. He also was married to the governor. The legislation failed.
Today, though, Oregon is one of the states with legislation that allows people to be able to choose a peaceful death, with the help of their physician.
But you say this is not about assisted suicide, correct?
No, it is not. What we are saying is that in any jurisdiction there is no reason to die alone, or in pain. Everyone can have a peaceful death, but it takes planning and forethought. And you are never too young to think about this: Terri Schiavo and Karen Ann Quinlan were young women. [Both women had family members fighting to take them off life support.]
What we’re saying is, most people tell us that they want some say about the end of their lives. Many of them say they don’t want to leave a legacy of pain, or delirium or a dramatic death. Those are not comforting deaths for their family members. It’s torture for their families.
Tell me a little about the people who call your toll-free number for counseling.
We field thousands of inquiries every year, and sometimes it’s a very simple conversation. Perhaps they’re on dialysis and they are not in pain, but they just don’t want to go on this way. We might say, “Well, have you talked to your doctors about what would happen if you stopped?” That’s what [humorist] Art Buchwald did. And he ended up living for many months in hospice and writing about it.
People have control over their lives, and they don’t know they do. Sometimes they call to say they’ve been through three rounds of chemotherapy, and wonder if they should have a fourth. We’ll have them consider how it will help, how much their life will be prolonged, what the statistics say about what percentage of people it helps, to help them make an informed decision.
What happens when people get a feeling of control back?
It’s empowering them in their lives. It’s a relief for them to talk about it, to make decisions based on what they want. Some people just decide to discontinue, or to forgo, extraordinary measures.
Sometimes people decide to stop drinking fluids and eating. Is that painful?
Hunger pangs eventually go away within a day, and you can address thirst with good oral care. More people stop eating and drinking in Oregon than use “aid in dying” each year.
It’s not a new thing. That’s what happens when people are dying or their illness advances — their appetite wanes. People get food forced on them, and maybe they don’t want that. I’ve had people say, “I know this will cause my death, and that’s OK because every day is more miserable than the day before.”
To stop taking in nutrition is perfectly legal, in every jurisdiction and in hospitals because the Constitution protects us from unwanted bodily invasion. People may not know to assert the right to be free of bodily invasion. But getting a psychological evaluation is always a good idea, so that your family knows, “Mom is mentally capable of making this decision.”
If people want to die at home in their own bed, instead of in a hospital, are there medications you advise them to have on hand?
People can accumulate medication, but we don’t encourage them, or urge them, to do that. We tell them, “We hope you don’t do this.” Sometimes, they tell us, just having it is enough, so that you can live better each day until your natural death.
What people want is to not feel like victims anymore. And some of them might have been tempted to do something violent, with a gun, or jumping to their death, and this deters them. They’ll say, “I want my grandchildren at my bedside — I don’t want to leave them with a horrific image.”
You say your organization is for a particular group of people.
Yes, it’s for people not in denial about their approaching death. They have to accept it enough to anticipate it and want to exert some control over what it will be like, not just for them, but the people who love them.
How do doctors react to patients who want to exert control over the end of their lives?
So much of what happens in medicine in cases like this is communicated in winks and nods. We also tell people how to talk to their doctors. With some doctors, and some hospitals, you don’t want to say anything like “I want to die.” Some doctors and religion-based hospitals consider that a mortal sin.
We tell people to just talk to their doctors about how the treatments they are getting are affecting their quality of life. It’s a bizarre dance of language you have to engage in.
For example, it’s OK to disconnect a pacemaker to relieve suffering, but not to intend death.
How would you describe the people who turn to Compassion & Choices?
They are not suicidal, and it would be an affront to them to call them that. They are not depressed, they are not mentally ill, they don’t have self-destructive impulses.
They are thoughtful people who do not want to act alone or in anger — they want to act in concert with people who love them. It’s called “aid in dying” because these are people who are already dying.