Exclusive Interview: Kim Callinan, President and CEO of Compassion and Choices

Helping People Make Difficult End-of-Life Decisions

I'm happy to bring onto the program Kim Callinan. She is president and CEO of Compassion and Choices. As we are dealing with our issues of aging, we have to contemplate the fact that at some point we're going to be dealing with end-of-life decisions. And that is what Kim's organization, Compassion and Choices, is all about. Kim, welcome to the program.

Kim Callinan: Thank you so much, Ric. It's just a pleasure to be here today.

Ric Edelman: Well, I think we all hope that we will simply live a wonderfully long, healthy life and then die peacefully in our sleep. But very often, increasingly, people are incurring medical conditions that have us engaged in a downward spiral that can last years, even a decade or more from any one of a number of medical conditions, from Alzheimer's and dementia to ALS to diabetes and heart conditions, etc. People who are facing incredibly challenging set of circumstances of a very slow, long, prolonged and very painful experience.

Kim: That's exactly right. So we do everything from seeking to educate people about their available options, as well as change the way medicine is delivered at the end of care. And we look to improve laws both at the federal and the state level so that people have greater options, and we can really create patient-directed end of life care.

Ric: Now, this is a very controversial conversation for many people. So talk about how you respond to the concerns that people naturally raise about whether it is appropriate for us to be having conversation about altering nature's course.

Explainer: Medical Aid in Dying

Kim: That's a really great question, Ric. While the issue is controversial among some, really seven out of 10 people support the option of medical aid in dying. And this is when a terminally ill person who is mentally capable and has a prognosis of six months or less to live, which means they're eligible for hospice care, is able to request and receive a prescription from their doctor that allows them to end their suffering if it becomes too great. And it quite simply is really bodily autonomy at the end of life. We have widespread support. Seven out of 10 people support it across all demographic groups. So it's really not controversial per se. However, unfortunately, it's controversial among the grassroots political leaders, and that makes it difficult for us to get passed in states. But fortunately, we're seeing a tremendous amount of momentum. And there are now 10 states and Washington, D.C. that have the option of medical aid in dying.

Ric: Elaborate on what that phrase really means - medical aid in dying. Is this the same as assisted suicide? Is this similar to what Kevorkian was engaged in back in the 70s?

Kim: So we distinction between medical aid and dying and assisted suicide, because with medical aid and dying, it is the patient who is in charge of the process from start to finish. They're the ones who are requesting the medication. They are the ones who have to be able to take the medication in some way, either orally or by pushing a plunger. But they're in charge of the process from start to finish. So, it's not a doctor centric process. It is a patient centric process.

Oregon and the Right to Medical Aid in Dying

Ric: You recently won a groundbreaking lawsuit in Oregon. Talk about that lawsuit and what that case was all about and the implication for everybody.

Kim: Absolutely. Currently, there is not a constitutional right to medical aid in dying. And Oregon was the first state to pass an initiative back in 1994. One of the elements of that law is that there is a residency requirement in place. You have to be a resident of Oregon in order to be able to access the option of medical aid and dying. Ultimately, the Oregon attorney general agreed to a settlement and now they are issuing directives to halt the enforcement of the residency requirement within the law.

Ric Edelman: Does that mean that anybody who wants to be able to take advantage of this can simply fly to Oregon without having legal residency there? They can take advantage of this law?

Kim Callinan: It does mean that non-Oregon residents can now take advantage of the law in a much simpler way without being a resident. However, it is a 13 step multi process to get through the law and somebody who wants that option needs to plan in advance. If you get a terminal diagnosis and you're at the very end of your life, it will be difficult for you to be able to get through all 13 steps if you haven't really given this thought in advance. Generally speaking, it takes people roughly 45 days to get through the process. But it can take longer. It can take four months if you don't already have a relationship established with your doctor, because the law does require for you to be treated by a doctor who is responsible for your care. They're not looking for people just to sort of fly in to give death care. They want people to get the full breadth of end-of-life care.

Ric Edelman: And does that mean you would need to expect to spend those 45 days or three or four months in Oregon?

Kim Callinan: Yeah, you're probably going to be in Oregon for 4 to 6 weeks at the end of your life.

Ric Edelman: This is a very difficult, uncomfortable conversation. Our healthcare system has gotten really pretty good at keeping people alive equally artificially - tubes that you're tied up to and machines in the hospital, artificial respirators, and so on. And we really need to put this into proper context. Just because you can be kept alive by our healthcare system, does that mean you truly want to be? And if not, what do you want to do about it? And I think this is the premise of the work that you're doing at Compassion and Choice.

Kim: Yeah, that's exactly right. And you just look at the statistics and the data around the number of people, for example, who die from dementia. Now, the most recent study has one out of every two people dying with or from dementia. Well, if you look back years ago, decades ago at the national statistics, people didn't die with or from dementia at the same rate they were dying of heart attacks. Actually, dementia, I think, was number seven in the 1950s. They died from pneumonia. They died from other kinds of diseases. But we've gotten really, really good at curing them. And so what happens now is people get to the end of their life and we keep them on medication for their diabetes and for their heart disease and for all kinds of other things. And for some people, they have a great quality of life and it's wonderful. So those are life-saving medications that also improve the quality of your life. But often you hit a point and those medications are no longer improving the quality of your life. And there are other decisions you can make to withdraw treatment. So even if you don't want to take the proactive state of choosing the option of medical aid and dying, people should be contemplating and thinking about other options they might want to take and what does quality of life mean to you.

Ric: In other words, if you're a cancer patient, you may decide to stop treatment. That's not the same as accelerating your death or a medically assisted process. This is simply a decision of stopping treatment because the treatment itself can be so draconian. These are the kinds of questions and evaluations you need to make for yourself if you're the patient and to talk about with family members who themselves may be dealing with these issues. And I would encourage you to learn more about all of this and by visiting the website at Compassion and Choices. And tell us, Kim, exactly how people can reach you.

Kim: So our website address is www.CompassionAndChoices.org and it is chock full of information about all available end of life options that are legal as well as all kinds of information to help you plan for your own end of life experience.

Ric Edelman: That's Kim Callinan, the CEO and president of Compassion and Choices. Thanks so much, Kim, for joining us on the show today.

Kim Callinan: Thanks so much, Ric. I appreciate being here.