Why You Should Vote Yes for Proposition 106, Regarding End-of-Life Options
Julie Selsberg and Charles Selsberg, whose agonizing death by ALS inspired her advocacy of Proposition 106. Additional images below.
Yes on Colorado End-of-Life Options Facebook page
Editor's note: As part of our continuing election coverage, we're taking a closer look at amendments and propositions that will be on the Colorado ballot in November. Today we examine Proposition 106 by way of an interview with a spokeswoman for the campaign. Tomorrow we'll highlight a Q&A with a representative of the opposition.
Proposition 106 focuses on end-of-life options. It would legalize what proponents refer to as medical aid in dying — a process by which patients diagnosed with six months or fewer to live can be provided with a prescription they can self-administer in order to end their suffering.
Representing the campaign in the following Q&A is Julie Selsberg, who became involved following the death of her father, Charles Selsberg, from ALS. Charles wrote a public letter about his situation that inspired death-with-dignity legislation that failed to win approval from Colorado's General Assembly — hence the ballot measure was put forward. In the following conversation, Selsberg outlines the details of the proposal and takes on criticism from opponents, including members of the state's faith community.
The transcript is supplemented by photos from the Yes on 106 Facebook page, as well as links and occasional insertions for purposes of fact-checking and clarification.
Westword: Why do you support Proposition 106?
Julie Selsberg: I am one of the two citizen proponents for this measure, and I was motivated to do so because this was something my dad wanted. My dad died about two and a half years ago from ALS. It was a long, terrible decline with his illness. Once he was diagnosed, after about a year and a half of suffering the symptoms, he said he would not see it through to the very end. He said he did not want to die an ALS death. He was not scared of dying, but he was scared of how he was going to die.
I watched him suffer that whole time, and I watched him suffer in his death.
Did you explore any end-of-life options over that period of time? Did you consider going to another state, for example?
Yes, we explored everything. We explored if there was a possible treatment and if there was anything that would prolong his life. We explored at every turn when he lost some part of his functioning. We got him occupational therapy. We did everything we could. And when it came time, he was the one who found out about medical aid in dying, and he explored moving to Oregon. But he made some phone calls, and he was told he had to establish a residency in the other state — and he was told it would be a year.
He didn't believe he had a year. And it would have also meant leaving. He moved to Colorado in his retirement to be with my sister and I and our families. To pick up and move at that point, when he was already in his severe and steep decline, that was not his first choice. He explored it, but in the end, he chose to stay here and be with his family.
Yes on Colorado End-of-Life Options Facebook page
Did he specifically express his wish that you explore creating an end-of-life law in Colorado?
He reached his line in the sand and decided he'd had enough suffering, and at that point, he withheld food and nutrition — and he asked me to write an open letter to our legislators asking that this be an option, knowing he wouldn't be around to take advantage of it. He'd given it so much thought, and he just thought it was an injustice.
My dad was a regular guy. He was not a politician; he was not an activist by any means. He just really thought this was something that should be afforded to people who were suffering. So he wrote this open letter to the legislature that was published in the Denver Post , and that's how things got started. His representative [Lois Court] wrote him back, and by the time we received the letter, my dad was in hospice. But I read him the letter and I gave him my word. I told him I would see it through.
We tried two years in the legislature. The representative [Court worked in conjunction with Representative Joann Ginal] brought it up two years in a row, and it couldn't get past the politics of the Capitol. And then there was an opportunity to bring a ballot measure, and I just felt like it was the right thing to do.
I can't talk about the end of my dad's life without seeing it and feeling it — and now I know I'm not the only one. There are so many people in Colorado who have shared their stories and who volunteered on this ballot initiative because they have been in the same position of having a loved one who suffered at the end of an illness. It motivates people to do something to help. This is the only thing that can help a very small percentage of our population who cannot be helped by palliative care and pain management. That works for most people. It just doesn't work for everybody.
How difficult was it for you to take a public role beginning when your dad was still with us and continuing through the ballot-measure process?
It's not easy for me. I'm two and a half years into it, and it's still hard on me. In my life, I've been a prosecutor. I'm an attorney, and I was a prosecutor for eight years, and then I was a prosecutor here for the attorney general for five years. What I did in those jobs was to seek justice for victims, whether it was victims of crimes or victims of the criminal-justice system, because my second job was actually running an exoneration project through the AG's office. I see this as an extension of that work. It's seeking justice for victims of a terminal illness and who are suffering. So it fits within my core values and my moral compass, and I feel like it's the right thing. I would not support if it I didn't believe it was safe and compassionate and that it would not lead to more deaths. It would just lead to fewer people suffering.
Did you ever consider running this measure as a constitutional measure?
This is a statutory change — and no, I'm not a believer in putting this into the constitution. But as a statutory change, absolutely.
Measures like this one have been passed in other states. How does this one compare to some of the laws that are already on the books elsewhere?
This is modeled after the death-with-dignity law in Oregon that has been in place for more than eighteen years. They have not had to make changes in the Oregon law, because it is working as intended. So the basic safeguards are the same as it is there and in California. [California passed a death-with-dignity law in October 2015; it went into effect in January 2016.] You have to be a Colorado resident. You have to be eighteen years old. You have to be diagnosed by two doctors as having a terminal illness with a prognosis of six months or less to live. You have to be mentally capable of making an informed decision. You have to have a request given to the attending physician, and "attending physician" and "consulting physician" are defined in our statute. These are not just any old doctors. These are physicians who have the primary responsibility for the terminally ill individual and the treatment of the terminally ill patient's illness.
You'd have to see the attending physician twice. You have to see that doctor, and be alone with that doctor when you make that request. And the purpose of that is to make sure the doctor can ensure you are mentally competent — that you understand all the options about treatment and palliative care and clinical trials, if that's something that's an option for you. You have to understand everything, and the doctor has to make sure that you are not being coerced in any way to do this, whether it is outright coercion or some kind of subtle coercion.
I've spoken to Dan Diaz. I've spent a lot of time speaking with him; that's Brittany Maynard's husband. [The late Brittany Maynard was a nationally known death-with-dignity advocate whose story is currently being developed as a movie.] And what she relayed to him about that process is that it's not just you go to a doctor, he takes a look at you, sizes you up, and then says, "Yeah, you're mentally capable. I'm going to check that box and we're going to move on." It's more like an interrogation. It's a thorough vetting. They ask you, "What are your goals? What would you like to do? Have you thought about this treatment? Why would you consider that? Why would you not consider it? Have you talked to your family? Have you talked to your extended family? What do your family members say about you finding out more about this option?"
It's really a thorough process of vetting that the person is mentally capable and they're not under any undue influence in regard to this option.
Then you have to wait fifteen days before you make your second oral request to that same doctor — your attending physician. And again, you have to be alone with your doctor, making sure you understand what you're doing and you're making an informed decision.
Yes on Colorado End-of-Life Options Facebook page
There's a third requirement of a written request; it's a form that's also included in our statute. It's a form that lays out specifically what you've discussed with your doctor, what are your options, what happens if you get this medication, that you don't have to take this medication, that you can rescind your decision at any time, and you know what the consequences are if you take this medication. You know what's going to happen ultimately. You have to have two witnesses to that written request, and one witness can't be related and can't be an heir. One witness cannot be your attending physician or anyone who has medical power of attorney. One person cannot be working for the health-care facility if you're residing in a health-care facility.
And then the statute says what the attending physician has to do during all of this. Besides all these thorough inquiries of the patient, they must counsel the patient on all the treatment options and their alternatives. They must counsel on the safekeeping of this medication. They must counsel on the ability to rescind this request. And if that doctor has any concerns along any part of this process, in any of their interviews, then that doctor must refer the patient to a licensed psychologist or psychiatrist — if they have any concerns about their mental capacity. Our measure then goes through and says what the psychiatrist or psychologist has to do in terms of determining whether or not they have the mental capacity to make this decision.
And finally, and most importantly, you must be able to self-administer this medication if that is your plan. No one else can do it. And "self-administer" is defined in the statute, as well. So what we're giving people is the opportunity to control the end of their lives and to not have to suffer if they decide they've had too much. It is respecting someone's autonomy and self-determination about their death just like they did about every other decision in their life.
You mentioned earlier that this is not a commonplace occurrence. In Oregon, how frequently has this law been used?
Oregon keeps track, just like our bill will, with record-keeping. Our Colorado Department of Public Health and Environment will be tasked with issuing a report every year about what's happening with medical aid in dying.
In 2016, Oregon put out their statistics for the previous year. And last year, 218 people requested the prescription, and 132 actually took it. Of those 132, seven of them had their prescription from the year before — so you can't just keep it contained within one calendar year. But we're talking about a state that has four million people and 35,000 deaths per year. The percentage of people dying from using medical aid in dying is .3 percent. It's tiny.
Over the course of the eighteen years in Oregon, 1,545 people have requested Medical Aid in Dying and 991 actually took it. The percentage works out to 36 percent who request the prescription and never take it. And I know that from my dad, in the end, considering he decided to starve himself — and it took thirteen days for his body to shut down — he would have used medical aid in dying. But the difference being — and it's proved by this statistic — having this prescription in hand gives people peace of mind that they won't have to suffer. So they can request it, and they might not ever use it. But it gives them the faith to go on and enjoy what little time they have left. We didn't have that.
In my travels around the city, I've seen more yard signs about this issue than any other matter on the ballot, including the presidential race. So there are clearly passions running high on both sides. How do you feel about the religious objections to this proposition?
I can't argue with anybody's religious beliefs. If you truly believe that God wants you to suffer in your death, then that's your belief. The only thing I can say is, please recognize that not everybody shares your beliefs and some people would like this as an option. Let it be an option for those who qualify and for those who seek it. I'm not even advocating that anyone use medical aid in dying. I just want it to be an option for those who want it.
Some people have religious objections to medical aid in dying being an option, just as they do when it comes to abortion. What's your response to that?
I would say by all means, do not use it. Don't consider it. Don't talk about it. Make that decision for yourself. But what's built into this measure and our package of statutes is, nobody has to do this. Doctors don't have to participate. It's specifically written into the statute that if a doctor doesn't believe this is part of their medical practice, they don't even have to tell their patient about it. If requested, they have to share their patient's medical records with another doctor. That's it. So this is just not being put upon anybody as something that's mandatory. It's just an option for others who are seeking it.
In your advocacy for this proposition, I'm sure you've gotten the opportunity to talk with a lot of folks. What kind of feedback have you gotten on this issue?
It was almost overwhelming during the signature-gathering phase of this initiative process. Total strangers would come up and say, "Thank you for doing this." I've gotten hugs from total strangers. I've gotten stories. People want to share some of the terrible things that have happened to them and their families. I think what struck me the most is the nurses — not just nurses, but hospice nurses who come up to me and say, "This is so long overdue." These are people who are there and see it and know that not everything works for every person.
Yes on Colorado End-of-Life Options Facebook page
I lived in this world with my dad. And until we put that letter out there, I would not know what other people think about it. I wouldn't even know what some of my friends thought about it. So even having this out there as a ballot initiative has brought the discussion out into the open, which I think is a good thing. Nobody wants to talk about death. Nobody wants to talk about suffering in their death. It's important that we do this, and even someone who's opposed on religious grounds, it's important that other people know this and that they have this discussion — and if it's their wish and their will, that people respect that. But it goes the other way, as well. It's a discussion we should be having. And what's happened in Oregon since this law has been in place is that end-of-life care has improved. Doctors are getting more educated. They're getting trained. They're having these discussions with their patients. Oregon is the best in the country in their end-of-life care, and they attribute that to their death-with-dignity law.
What are your thoughts about the objections that have been raised to this measure?
I hear the concern of the opponents. But I also hear a lot of speculation and a lot of stories that misrepresent facts and evidence. I am a person who bases things on evidence, and what we have learned from Oregon and Washington and other states that have this is that the laws are not being abused. There's an organization in Oregon called Disability Rights Oregon. They are tasked with ensuring that disabled individuals aren't being taken advantage of and that they have the same rights as everyone else, and they defend those rights. And they stated this year that in the last eighteen-plus years this has been in place, they have not received one complaint of coercion or exploitation. The only complaints that they have received, and they are few, are that some disabled individuals feel at a disadvantage — that this law might not be available to them should they be terminally ill because they might not be able to self-administer.
That tells so much about how this law has been working and that the safeguards are in place. We have those same safeguards, and we have some additional ones. We have put into statute sort of a best-of. We took what happened in the legislature and we listened. For instance, we listened to concerns about insurance companies. And now there are actually written provisions that say that you may not be denied any kind of treatment or care based on your inquiry into medical aid in dying. We built that in. More than that, the concerns I hear can be addressed. We have Title X of our revised statute that deals with insurance. Our legislature regulates the insurance industry. We can deal with any kind of insurance concerns in Title X. We've put it into our statute, and we have the entire insurance code to work with. If we're concerned about our doctors, then put it into Title XII of our revised statutes. Because our doctors are regulated.
There's no way to help this small segment of the population except by adding a measure like this one — to add it into our health code and make it safe and make it regulated. There's record-keeping that's included, and there are criminal penalties that are included. And the criminal penalties don't just go to someone who's causing the death of someone through a coerced request in medical aid in dying or concealing or destroying a rescission request. It actually goes so far as to make it a Class 2 felony to alter or forge a request on the written part. If there's any kind of undue influence, or if someone interferes with a patient rescinding a request for the prescription, it's a Class 2 felony. And a Class 2 felony is murder in the second degree, it is kidnapping, it is rape. This is taken seriously.
I just feel like we have addressed all the concerns and we've put the proper amount of safeguards into this policy. We are not the first ones to do it. We are not going out there and just sort of testing something out. We've taken something that's been tried and tested. It's a comprehensive package, and it's the kind and compassionate and safe and just thing to do.