End-of-Life Choice, Palliative Care and Counseling

Barbara Coombs Lee

Aid-in-Dying Supporters Vow to Help Hawaii’s Terminally Ill

by Lara Yamada
KITV News
November 12, 2012

“In the end of February, it was discovered I had kidney cancer,” said hospice care worker Dorothy Haden, who has stage four cancer.

“I tried to live my life with dignity, and I do want to end my life with dignity,” said former lawmaker Earnest Juggie Heen, who has liver and pancreatic cancer.

Both said they want to choose how and when they end their lives.

“It’s our position that aid in dying is legal and it can be incorporated into medical practice legitimately here in Hawaii,” said Barbara Coombs Lee, who is the president of Compassion & Choices, a national nonprofit organization that supports aid in dying. She returned to Hawaii in early November, one year after a small group of Hawaii doctors first prescribed life-ending medication to a terminally ill patient.

“Hawaii has a constellation of laws that have never really criminalized aid in dying,” she said.

She said in the past year, 31 people have inquired about aid in dying, seven qualified to receive medication, and four were actually prescribed it, but she said all four died of natural causes before taking that prescription.

“People just want the comfort. They just want peace of mind,” she told KITV4 reporter Lara Yamada. More

Vote Like Your Future Depends on It

This election season is extracting an enormous toll from candidates and citizens alike.

Pressure is always intense in a Presidential year, but this year is different. Airwaves and Internet hammer away with news of poll after poll, minute campaign details and endless tit for tat. The presidential race, Senate and House races — even local campaigns — all occupy space in national media. Twenty e-mails appear in my inbox by noon each day, all URGENT and all pleading for funds.

The money flow is mind boggling. According to followthemoney.org, state races alone have raised almost $1.2 Billion. OpenSecrets.org reports that each presidential campaign has raised and spent almost a billion dollars. And of course, this doesn’t include the biggest spenders of all, the super PACs.

The world watches in wonder and dismay, and my sense is most Americans just want it to be over. It’s understandable that people might block out the noise and ignore politics altogether in an attempt to restore balance and sanity to their lives. For those ready to run screaming from the computer or TV, sit out the election and withhold their vote, I have two words:

More

A Graceful Exit: Taking Charge at the End of Life

by Claudia Rowe
YES! Magazine
September 19, 2012

 

I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”

I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.

As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, there will be 19 million Americans over 85, all at high risk of losing the ability to care for themselves or dwindling away due to organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)

So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.

My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.

The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know if she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.

This cannot be right. This cannot be what we want for our parents—or ourselves. More

Uninformed Consent, Unshared Decision-Making in the ICU

By Barbara Coombs Lee

Imagine yourself the son or daughter of a grievously ill octogenarian. Your mom or dad suffered a catastrophic event and has been in an ICU, barely conscious, for two weeks. You understand organs are shutting down, but you struggle to understand the medical jargon or the purpose of tubes and machines attached to every orifice. You and your family have kept a steadfast vigil at the hospital, and today the doctors called a meeting to talk with the family.

The family is desperate to understand what is happening and learn what lies ahead. The doctor needs the family to authorize a treatment plan. Will you learn how close your loved one is to death? Will the doctor learn their end-of-life wishes? Are there options and difficult decisions to be made? The legal standard for these conversations is that the family consents to treatment after being fully informed of alternatives, risks and benefits of each. The medical standard is that critical treatment decisions are not unilateral, but shared by the patient or surrogate and the doctor.

Sadly, informed consent and shared decision-making, the twin pillars of patient-centered healthcare, aren’t the rock-solid structures we would hope for. They are subtle, fragile fragments, often half-buried and overlooked in a heap of technological rubble. It’s a doctor’s job to dig them up and erect them, and many are not so inclined. That’s the lesson of a new study in the Journal of Intensive Care Medicine.

It is well established that many dying patients endure excesses of torturous treatment in the intensive care units of America. Tubes, machines and other contrivances can take over in clear violation of previously expressed wishes. Advance directives declining such treatments routinely get ignored. Three years ago I blogged about a bloated and misguided medical-industrial complex that tortures patients, and called it a national tragedy. I’m sorry to report not much has changed since then. More

End-of-life planning choices should be in your control, says Compassion & Choices

By Evelyn Theiss
Cleveland.com
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.