Column: Patt Morrison asks: Dr. Katrina Hedberg

As of Thursday, any cogent, terminally ill adult living along the entire Pacific Coast of the United States – from the Canadian border to the Mexican – can legally ask for lethal drugs to take her or his own life. California now joins Oregon and Washington, along with Vermont and Montana, in a “right to die” – the versions and restrictions, like the names, vary for each state. It wasn’t California voters who passed the End-of-Life Option Act, but the state Legislature; Brittany Maynard, a young California woman with terminal brain cancer, made a video appeal in support of the bill. She said she was forced to move to Oregon to die legally with a doctor’s assistance. California’s law is modeled on Oregon‘s, which has been on the books for nearly 20 years, and Dr. Katrina Hedberg, the state health officer and epidemiologist at the public health division, explains how it has worked there.

CLICK HERE TO LISTEN TO THIS INTERVIEW ON THE ‘PATT MORRISON ASKS’ PODCAST>>

Let’s look first at the nature of the law, what Oregon’s law requires of patients and of physicians.

It laid out several sorts of categories or criteria for patients who would be qualified or eligible to participate. They had to be an adult, so 18 years of age or older, and a resident of the state of Oregon and be diagnosed with a terminal illness with six months or less to live.

Now, they also had to be able to make and communicate a healthcare decision. So the process is that they could make a request of a physician

And there had to be a second physician or a consulting physician who agreed with the diagnosis and the prognosis, as well as the patient’s ability to make and communicate healthcare decisions.

So the patient needed to have two oral requests separated by 15 days as well as a written request. And the written request had to be witnessed by two people, one of whom could not have a vested interest, so a family member who was going to inherit, for example. So those are the strict criteria that were laid out in the statute itself.

What sort of diseases are you finding in the patients who decide to take their own lives in taking advantage of the Oregon law?

Because the law specifies that a patient has to have six months or less to live, the majority of patients are those who have a disease that has a sort of a downward spiral, if you will, or a prognosis that’s relatively short.

And the diseases that fall into this category are often cancers as well as diseases like amyotrophic lateral sclerosis, or Lou Gehrig’s disease, as well as HIV infection. So those have been diseases that we have seen for folks who have participated in this act.

How many have taken advantage of this law in the 19 years it’s been in effect?

Since the beginning, there have been a total of 991 patients who have taken the medications in order to hasten death. Now it turns out that there are a larger number of patients who’ve actually requested a prescription; that’s over a thousand, or it’s around 1,200. So it looks like, of all the patients who get a prescription -- somewhere between two-thirds and three-quarters of them -- take the medication.

There are a number of patients who get the prescriptions but end up not taking the medication, but die of their underlying disease.

Why is that? Has anyone looked at that reason?

When a patient is diagnosed with the disease, a life-threatening disease, obviously there are a number of conversations that go into it, including what are the different treatment options, et cetera. At a certain point the conversation may move on to, there’s no cure or it’s not treatable, and what are the different aspects or elements that are available, including things like being on palliative care or on hospice care.

Now, in our reporting system, physicians are required to report to us all of the steps up to the point the prescription is written, and then they report to us after the patient died, through the death certificate.

We then ask physicians, “Did the patient take the medication or not?” But the act does not specify what needs to happen between the time a prescription is written and the time of death. I do know that again through anecdotes that

For some people, the physicians say the patient wants to be able to have choices and options. They want to know it’s there.

I would have expected people over 85 who are facing fatal illnesses to be represented in greater numbers among those who take advantage of this law. Instead, there’s a much larger percentage in, for example, the 18 to 64 age group – and that’s certainly a big age range.

I think a couple of things happen as we get older. One, certainly, is we know that – it’s not true for everybody, but with a lot of people – they start to have some cognitive impairment, dementia, even if it’s not full-blown Alzheimer’s. But they may have increasing difficulty in making health care decisions. So I think that’s one thing, that we see higher rates of participation in younger, although the average is 70, so that’s relatively old. But the rates of participation are higher and younger.

Another is I do think that the older people, [it] may just the social norms, what they grew up with may not be as likely to choose this. They may also view more that their physicians should make the choices for them et cetera. So I do think that there’s something about a changing social norm that might allow younger people [to] have more freedom, if you will, or feel more like they could ask this of their healthcare providers than older people.

What are some of the demographics of people who do take advantage of this law in terms of race, education and income? You noticed some big differences.

What we’ve seen in our data is folks with a higher educational levels; at least, almost half of all participants have had a college graduate degree or higher. They’ve graduated college. Only a fraction of them had less than a high school degree, and about 25% or 26% percent were high school grads. So 75% have had some college and/or graduate degree.

We’ve also seen that the vast majority, 97% of people who participated, have been white. Oregon is a pretty homogeneous state, but we actually are becoming more diverse, more similar to California. And our state right now I think is about 80% white, and we have maybe 15% Hispanic or Latino and then we have 3% African American or American Indian.

And basically, the vast, vast majority of people who’ve participated are either white or Asian. We’ve seen very few Latinos, Hispanics and/or African Americans or American Indians participate.

Has there been any gender difference?

No, actually not. It’s pretty much 50-50 participation between the two sexes.

What often gets raised as a concern is that people will choose to die because they don’t want to be a burden to their families. You wrote several years ago about concerns about inadequate pain control and pain management as one of the reasons, and that concern about becoming a burden on caregivers.

One thing is, the law itself writes what all the steps up to the point a prescription is written but really does not address what happens between the writing of the prescription and the time of death. So a number of the concerns that arise do have to do with what happens during that time period. Are the patients being adequately cared for? Do they have access to adequate pain control?

We know that there are very good pain medications out there, but there are side effects with them as well. When we had interviewed some families early on -- this was a number of years ago -- the family member reports that yes, pain can be controlled, but at the expense if you will or the cost that the patient is kind of out of it, or they’re woozy or they’re sleeping all the time, that having their pain controlled also meant that they lost the ability to participate in activities that made their life meaningful.

When people express concerns about being a burden, I understand that. When we had interviewed family members, however, many of them basically said, “But you’re not a burden -- you’re our loved one and we want to take care of you.”

I sort of use the analogy here that when my kids were young -- they’re now both in their 20s, but when they were young, if you’d asked me, “Is having a child or a baby or a newborn a burden?” You’d say, Well, yeah, they keep me up all night, but I wouldn’t change it for the world. So just because someone is asking the person themselves, they might be worried about it. But when we asked family members, in fact, they really did want to take care of their loved ones throughout the dying process. So part of this of course is what is perceived by the patients themselves compared to what the family members are actually experiencing.

And at least when we interviewed the family members, it was just the opposite: they really did not want their loved ones to die -- to die at all, much less die a hastened death.

You write in one of your papers about even the terminology as a matter of dispute because of the connotations. Proponents prefer the term “physician aid-in-dying,” or “hastened death,” or “death with dignity.” Opponents prefer “physician-assisted suicide.” Have you seen any changes, any agreement, on any one set of terms or words that people use?

The statute itself basically says that this should not be considered suicide. So we use the term “death with dignity” because that is what the statute was titled and that is what it is called. But you’re right that the semantics around “hastened death” or “aid in dying” are different from the opponents, who continue to use the term “physician-assisted suicide.”

You may not want to answer this, and I understand perfectly, but the question is whether this law has had an effect in your family – a discussion about advance directives and things that may not have come up before.

I don’t mind, actually, answering that question because my parents are old – my mother is 90 and my father is 96. Luckily they both are completely cognitively intact, they’re very active, they live independently, they live at home and they’re very intellectually engaged.

But we actually have not had any conversations specific to this act, although they have asked me about my role, and they certainly know I have been quoted in the media a fair amount. But they do want to have discussions about advance directives, and what does that mean, and they do want discussions about whether EMTs should come to the house, how aggressive should care be, since neither one of them has a terminal illness at this point. …

And so we have had some of those conversations. Luckily, we have many other things to talk about as well, so it’s not a major conversation at Thanksgiving! But it certainly is there, because I do want to honor their wishes. My father being 96, I hope he lives another 20 years, but then he will absolutely be the oldest person on Earth!

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