What Mass. Can Learn From Oregon About Dying With Dignity

Death is an emotional thing.

And debate over whether to allow terminally ill patients to end their lives by taking a lethal dose of medication — the question facing Massachusetts voters in November — is particularly fraught. Just listen to the charged on-air exchange between supporters and opponents of Question 2 — aka, The Death With Dignity Act, aka, physician-assisted suicide — on Radio Boston earlier this week.

So we thought it might help to start with some cold, hard statistics from the state that knows the issue best.

In 1994, Oregon voters approved the first-in-the-nation right-to-die law allowing terminally ill adults to obtain and use prescriptions from their physicians for self‐administered, lethal doses of medications. After a failed repeal effort, the law was enacted in 1997. Each year, Oregon’s Public Health Division is required to collect certain information and issue annual reports. Here are some of the latest stats from Oregon:

• Since the law was passed in 1997, a total of 935 people have had Death With Dignity Act prescriptions written and 596 patients have died from ingesting medications prescribed under the DWDA.

• Of the 71 DWDA deaths during 2011, most (69.0%) were aged 65 years or older; the median age was 70. As in previous years, most were white (95.6%), well‐educated (48.5% had a least a baccalaureate degree), and had cancer (82.4%).

• Most (94.1%) patients died at home; and most (96.7%) were enrolled in hospice care either at the time the DWDA prescription was written or at the time of death. Most (96.7%) had some form of health care insurance, although the number of patients who had private insurance (50.8%) was lower in 2011 than in previous years (68.0%), and the number of patients who had only Medicare or Medicaid insurance was higher than in previous years (45.9% compared to 30.4%).

• As in previous years, the three most frequently mentioned end‐of‐life concerns were: decreasing ability to participate in activities that made life enjoyable (90.1%), loss of autonomy (88.7%), and loss of dignity (74.6%).

Washington State voters approved their own Death With Dignity Act in 2008. Here’s their most recent annual report.

In Oregon, George Eighmey might be called the “godfather” of Death With Dignity. A former Oregon state legislator and retired director of the nonprofit Compassion and Choices of Oregon, Eighmey was a key player in instituting the Oregon law, defending it against repeal and shepherding it into reality.

Eighmey first began thinking about more dignified ways of dying when he was a teenager working as an orderly at a Catholic nursing home where terminal patients suffered painful, debilitating deaths, he says. At Compassion and Choices, where he spent 12 years, he spoke to hundreds (he says 1,600) terminally ill patients who were considering using the state law to help them die.

Recently, I phoned Eighmey at his home in Portland and asked what folks in Massachusetts might learn from Oregon about how the law has played out over the years. (Just to clarify: We realize this is just one person’s perspective on the issue. We will explore other angles in future posts.) Here, edited, is some of what he had to say.

1. It’s About Choice

“It’s all about choice. You decide. No one else can decide for you. No can can force you into it, coerce you into it or even suggest it to you unless you make a statement: ‘I don’t want to live like this any more’ or ‘I’m interested in that law out there, doctor, can you give me something to alleviate this pain and suffering.’ Those types of questions can open the door, but even with a terminal illness, no one can suggest to the person, ‘Hey, why don’t you use the law.’”

2. There Are Hoops

“A person may wish to use the law but there is a process in place to make sure you qualify. And this is not some easy process where you call up your doctor and say ‘Give me a pill.’ You need two doctors, two oral requests 15 days apart — one a written request — and you then need to complete this process and get the medicine. The medicine is not inexpensive. [What's used is] a barbiturate, generally powdered secobarbital and pentobarbital…10 grams.”

After the choice and the process, there’s completion. Completion is the most difficult aspect of this law. The number one question we get is, ‘How do I know when to take it?’ When I got asked that question, I would say, ‘I can’t tell you.’ No one [in this situation] wants to die, but they don’t want to keep living how they’re living.

Again, it’s your choice. It can be accomplished in two weeks or 15 days; the average length of time between the first request for medications and taking them is 75 days. It’s not a quick process. There is ample time for people to change their minds and ample time for loved ones to persuade their loved ones to change their minds. To people who called and said, ‘I don’t want my loved one to do this,’ I’d say, ‘It’s not up to us to decide what quality of life they can endure. I would suggest it’s their decision, if you love them enough, you’ll let them make that decision.”

3. Who Is Dying?

“After doing this for years, I was able to develop a profile: People decide to take the medicine when they have detached from the everyday world — TV, newspapers, scenery. I remember once, I was with a man and it was a beautiful day in the mountains. I said, ‘It’s a beautiful day.’ And he said: “It is for you, not for me.”

They don’t detach from family, though. They wanted their loved ones near them…to say the final words; they want them in the room when saying the goodbyes.”

(Indeed, not everyone who gets the prescription uses it. According to the Oregon reports:

• Of the 114 patients for whom DWDA prescriptions were written during 2011, 64 (56.1%) ingested the medication; 63 died from ingesting the medication, and one patient ingested the medication but regained consciousness before dying of underlying illness and is therefore not counted as a DWDA death. The patient regained consciousness approximately 14 hours following ingestion and died about 38 hours later. Incomplete ingestion was reported for the patient.

• Twenty‐five (25) of the 114 patients who received DWDA prescriptions during 2011 did not take the medications and died of their underlying illness.)

Also, regarding the well-being of family members through this process, Eighmey cited a  study by Linda Ganzini which found that “family members of Oregonians who requested aid in dying felt more prepared and accepting of the death than comparison family members…[and] pursuit of aid in dying does not have negative effects on surviving family members and may be associated with greater preparation and acceptance of death.”

4. Suicide Vs. Right To Die

“The difference between suicide and death with dignity is this: with suicide, in general, you have a physically healthy, mentally unstable person who wants to die. In death with dignity, you have a physically unhealthy, mentally stable person who would love to live. It isn’t the same as what we think of as suicide even though it is technically suicide….The law says, if in the opinion of either of the physicians, this person has a mental problem, they must have a psychological evaluation.”

(Eighmey knows a great deal about this topic: his own son committed suicide in 2006 after years of debilitating mental illness.)

5. The Opposition

“Of course, the big money opposition comes from religious groups.

[There is also a very small group] of people who are in wheelchairs; they claim that the law…denigrates disabled people. Back in 1999 I introduced a bill to amend the statute to say: No one with a disability can use this law solely based on a disability, they must have a terminal diagnosis determined by two physicians who say you have six months or less to live. [For instance,] Steven Hawking would not quality for the law.

Why are doctors opposed? It’s about power and decision-making. The law shifted this end-of-life decision-making from physician to patient. This was a change in the physician-patient relationship. It shifts it to: ‘It’s me, doctor, I am the one asking you to do this and I will seek a physician who is willing to support me in this decision.’

…so it shifted that power, that decision-making power to the patients. In various degreess physicans reacted to it — some were religiously opposed. Then there was a group of physicans that felt ethically they couldn’t do it because they felt it was violating their Hippocratic Oath…. But this isn’t something horrible, unethical, its relieving — it’s honoring the patient’s request.

In the past, it was the doctor who decided when it was humane to give the extra amount of morphine or extra painkiller. There’s always been the wink-wink way; this brings it out into the open. After all these years, there’s still some quietness to it, physicians don’t want their names revealed.

In the end though, it is bringing it out in the open. We have a script on ‘How do I talk to my doctor.’”

(More stats from Oregon related to doctors’ involvement:

• One of the 71 DWDA patients who died during 2011 was referred for formal psychiatric or psychological evaluation. Prescribing physicians were present at the time of death for six patients (8.5%) during 2011 compared to 18.7% in previous years.

• Sixty‐two (62) physicians wrote the 114 prescriptions provided during 2011 (range 1‐14 prescriptions per physician).

• During 2011, no referrals were made to the Oregon Medical Board for failure to comply with DWDA requirements.)

6. Speaking Of Religion

Eighmey said he collected information, informally, on the terminally ill people he counseled. Here’s what he found:

“Oregon has one of the lowest percentages of people who identify as belonging to a religion. But when we asked about religious preference, 40 percent said they belonged to some religion (Catholic, Protestant, Baptist, Jewish, one Muslim) and of the other 60 percent, half of them said they were “spiritual” believing in a God or higher power, and the other 30 percent said they were atheist or agnostic.

Forty percent self-identified as Republicans and 42 percent as Democrats and the rest as Independent or non-affiliated.”

7. The Dying Process

“This is what upsets me. The opposition, their number one argument in Oregon was 25% of people will wake up after three hours, in agony, pain and suffering. This is absolutely false.

We know now that the average length of time to death is 2 hours, and it’s a very peaceful death. After you take the medication, the average length of time to coma is five minutes and the average length of time to death is three hours.

Of the 596 people who have taken it, there have been some who have not died within that average length of time — a handful have gone 24 hours or longer. That handful — 5, 6 out of the total — they’re in a peaceful coma that whole time. We tell the families this might be a vigil. …the only negative of taking the medicine is the somewhat bitter taste; we have people take it with a soda or alcohol. You have to consume the medicine in two minutes because you get so sleepy. With Seconal, it slows the heart down and just shuts down everything.”

8. Taking Control Of Death

The thing that strikes me about this entire debate is the vast expanse between the law’s policy implications and the very specific, intimate details of each individual’s decision about when and how to die.

A profile last month in The New York Times of Washington State doctor Richard Wesley, who has incurable ALS, underscores the point:

He lives with the knowledge that an untimely death is chasing him down, but takes solace in knowing that he can decide exactly when, where and how he will die.

Under Washington State’s Death With Dignity Act, his physician has given him a prescription for a lethal dose of barbiturates. He would prefer to die naturally, but if dying becomes protracted and difficult, he plans to take the drugs and die peacefully within minutes.

Dr. Wesley is emblematic of those who have taken advantage of the law. They are overwhelmingly white, well educated and financially comfortable. And they are making the choice not because they are in pain but because they want to have the same control over their deaths that they have had over their lives.

While preparing advance medical directives and choosing hospice and palliative care over aggressive treatment have become mainstream options, physician-assisted dying remains taboo for many people. Voters in Massachusetts will consider a ballot initiative in November on a law nearly identical to those in the Pacific Northwest, but high-profile legalization efforts have failed in California, Hawaii and Maine.

 

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  • leel

    Shouldn’t a stranger be able to impose their ideology on me, and my (terminally ill) body, to prevent me from making the choice which I think is best for me & my family? Isn’t that what a free country is all about?
    Thanks for the article and the facts (facts are really nice when discussing such important issues).

  • Steve

    Suffering is difficult, especially in patients who are terminal. It is a very stressful situation that impacts the life of the person who is suffering, the lives of their loved ones, and the lives of their care givers. I know people who work in home hospice, and yes, being a part of a terminally ill person’s life is extremely emotional even if you are not related to them. However, there is no room for emotions in the decision the author of this article is asking us to make. The fundamental decision is not about preserving dignity, ending suffering, or eliminating pain, though the author would have you to believe that to be the case, because as humans we all want those things, they are an easy yes. The real question is, should killing a human being ever be considered acceptable behavior in a civilized society. Should it be legal, even if the person we choose to kill is ourselves? This decision has grave consequences, as like many laws it will set a president. What next, will we allow inmates with life sentences to kill themselves, what about people confined to wheelchairs. Has anyone considered situations where the law could be abused and people could be coerced into killing themselves by their own loved ones, who can no longer bear the stress of caring for someone terminally ill, or who simply want their loved one’s money. Because that would never happen in a moral society. Does this put us on that slippery slope…? I would encourage the people of Massachusetts to seek the truth about this subject, research the facts, and avoid opinion based articles that use words like, “what upsets me” …, and suggest that it is ok for Doctors to violate their Hippocratic oath because it isn’t horrible for them to kill someone, it isn’t horrible to who?

    • David Piepgrass

      Yes, it should be legal to escape being tortured to death by a deadly and incurable illness. Yes, it is more than reasonable in a civilized society. If I were in that situation, it would tick me off to be restricted by your religious beliefs.

      And the doctor, clearly, kills no one; the dying patient is the one that ends his or her life. You wouldn’t claim that the cashier at Starbucks forced me to drink coffee. Especially when if I can’t get the coffee until I ask for it three times in a 3-week period and pay a substantial sum of money for it. And how often does this “coersion” you speak of actually happen? Once in 10,000 cases? 100,000? Has it happened even one time in Oregon?

      It’s hardly the same thing, but if a man sentenced to life in prison generously wishes to save the taxpayers, say, a million dollars (the rough cost of 20 years’ detention) by killing himself, I’m hardly convinced we should stop him. The issue of coersion, however, is far more plausible for inmates–we’ve all heard horror stories about how inmates are treated in some prisons, and we don’t want to encourage institutions that actually make people want to kill themselves. On the other hand, if that happens, it is a problem with the institutions rather than with the right to die. However, the problem is not likely to be corrected in our apathetic culture.

  • Nora Miller

    As one of those family members of an Oregonian who used the law, I can attest that it made all the difference to my late husband to know he had the option of doing something about it when he felt he’d lost too much. We, his loving family, gladly traded a few extra weeks with him for his ability to say goodbye with a smile, before the brain tumor growing in his head left him incoherent and totally dependent. We would have cared for him no matter what, but the thought that we were able to help him maintain that last shred of human dignity has helped us tremendously in the years since he died. Please don’t let the Catholic church distort the truth of this law–it helps the few who need it, and it threatens no one who chooses not to use it. The only rights we can be sure of are the ones we fight for.

  • http://www.facebook.com/2OldVegan Bob Cox

    At 77, my father broke his back,was in constant pain that was controlled with morphine a he and was facing at least 18 months of painful therapy with no guarantee of healing. My brothers and I shared care and at my turn, when I walked into the hospital room, he said: “I’ve had enough pain in my life, I’m ready to check out.” Since we were in Texas, there was no assistance whatsoever. So, he simply quit eating or drinking. After a couple of days, he slipped into a coma and died in five days with his family around him. He was on a morphine drip for the back pain, so he faded peacefully. Had he lived in Oregon, it would have been much easier for him.

    None of us has the right to force others to keep living lives of pain and suffering. If someone is capable of making the decision, then it should be their right to control the end.

  • bud

    Beam me up, Scotty

    • http://www.facebook.com/2OldVegan Bob Cox

      A rather flippant remark for the subject.

      • http://www.facebook.com/gibsonjont Jon Gibson

        Maybe it’s helpful to be flippant when deciding to end something so important.