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.