What is Medical Aid in Dying (MAiD)?

In July 2024, I interviewed Katie Sue Van Valkenburg, the Program Coordinator for Medical Aid in Dying (MAiD) for Denver Health to learn more about MAiD, how it is provided in Colorado, how Denver Health supports MAiD patients, and what are some of the common challenges for patients and their families pursuing MAiD. This is the first of four blogs from that interview, which has been edited and condensed for clarity.

GDM: Can you tell me a bit more about what Medical Aid in Dying is and how it's specific to Colorado?

Katie Sue: So, the official law here in Colorado is called the Colorado End of Life Options Act - very fancy name. It is colloquially called Medical Aid in Dying, or MAiD is the acronym. It is very important that we use these words as clinicians, or people supporting other people accessing death and dying, because it reduces stigma and offers clear information about what the law entails.

What the End-of-Life Options Act does is it allows an eligible, terminally ill person, with a prognosis of 6 months or less, with full cognitive capabilities, to request and access medication, so that they can peacefully end their life if they so choose. I think the word “option” is the big part of the Act that sometimes people forget.

Medical Aid in Dying is currently legal in 11 jurisdictions in the United States. There are a lot more states that are trying to add similar laws, which will be great. Colorado is one of the 11, and our law was passed in 2016 originally. It was actually one of the most supported laws in Colorado history. 65 percent of Colorado voters voted for the initial law, which is great. It went into effect shortly after the election in 2016, and it's grown since then.

Since its introduction in 2016, the law has shown need for improvement. Luckily, Colorado did improve our law recently, and I would be remiss if I didn't shout out to incredible legislators who helped with these revisions. Senator Ginal and Representative Brown were the sponsors of the bill and Compassion and Choices were the ones that helped with the legislation. The biggest thanks goes to all the volunteers and the countless testimonies. All of those things helped us pass this updated law, which went into effect on August 7th, 2024. 

So, Colorado, with its new legislation, is going to be one of the more progressive states now for MAiD, which is really great. Most of the jurisdictions in the United States mirror our law in terms of the eligibility - that they're terminally ill, with 6 months or less to live, that they are a resident of the state in which they are accessing the law and are 18 years of age and older.

But the process is really where the laws are different. So, in most U.S. jurisdictions, the law requires that eligible people make 2 formal requests separated by 15 days with 2 different doctors, known as an “attending” physician and a “consulting” physician.  In addition, they will complete a written request form that they have to sign in the presence of 2 witnesses. So, once they've done those 2 visits and they've done the written request, they can then access the medication with our law.

Our new law is an incredible update for 2 reasons. Number one - we're shortening the waiting period. So instead of waiting 15 days, we'll wait 7 days, which is a much better number. Denver Health is releasing a paper soon and one of the statistics we found is that one in four of our patients actually died within that 15-day waiting period. 25% of people. It's way too many. It's so unfair. And we found that anecdotally most of them were dying between day 10 and day 14. So, a 7-day waiting period is going to be much more accessible.

The other great improvement is that we can waive the waiting period entirely. The caveat is that it is at the discretion of the prescribing MAiD physician, that if they think the person is imminently dying, we can write the script the same day. They still have to complete the process of the 2 visits and the written request, but they can have the prescription immediately, as soon as they're done with that process.

The other beautiful improvement is the addition of Nurse Practitioners (NPs) to the law. The thought process for that is access. In more rural areas, there's not a lot of MDs, instead they have NPs as the attending provider. So that means that nurse practitioners can attend, meaning that they can prescribe the medications, and they can also consult. So, for those people that are struggling to find a second doctor, now, we can add in a whole bunch of new humans to help with the access to the law.

All of this went into effect on August 7th.

GDM:  Have you seen a challenge with finding prescribing physicians?

Katie Sue: In Colorado, I would say yes, until they found Denver Health or Kaiser Permanente. And I'm obviously biased, because I work for Denver Health. It’s great that we have 2 incredible programs running side by side.

But if a patient is not associated with these two hospitals or aware of our programs, it’s very difficult. They not only struggle to find a consultant, but sometimes they struggle to find an attending provider.

There are patients who have asked their primary care doctor, their oncologist, their cardiologist. All of them have said no, or “I don't know how and I don't know how to refer you, so, we're just going to stop it right here.” What a lot of providers do not know is that not providing a referral is against the law. And I am hopeful that more providers understand this in the future, that if you are not willing to provide someone with help with Medical Aid in Dying, you are obligated by the legislation to refer to someone who can. When someone says, “I don't support MAiD.” That is fine. That is your right. But it is also within your job duty of “do no harm” to refer them to somebody who can support them in that access.

But it's definitely something we run across. And it's heartbreaking, because sometimes we have to start the MAiD process over from scratch for a patient who believes they’ve already met the requirements. A patient thinks that they've done a 1st request, and nothing has been logged. So, then we have to have the 1st visit, and then they have to wait 15 days. That comes up more often than I wish.

GDM: It's a special kind of prescription, right? You need to go to a special pharmacy, right?

Katie Sue: I wish that we could just go to King Soopers. I know that's everyone's favorite, just to kick it to their local pharmacy. Unfortunately, this is a very specific prescription that, number one, not all pharmacies are willing to fill because pharmacies are allowed to opt out just like doctors, but also there's such specific ingredients. Most pharmacies don't have this amount of ingredients, much less all of the pieces.

In Colorado there are quite a few options for filling a prescription. There's far more than when I started.

Denver Health has their own pharmacy that can do this, but patients can also pick them up from Pencol Pharmacy, in Denver. The nice thing about Pencol is that they can ship, so for our patients that live in Montrose or in eastern Colorado, where there's not a compounding pharmacy, we can ship it right to their door to make it much easier for access, especially if they don't have someone to drive to Denver. It’s important to note, that if you are requiring that it be shipped, you'll have to call the day after your appointment, because it takes their system 5 or 6 hours to process. Typically, they can ship it overnight. But I tell patients to usually expect to wait between 3 and 5 days for it to get there. So, this is great for people who are not in a rush and have that kind of grace period, but it does have a little bit of a delay.

There are also private compounding pharmacies throughout the state that will compound MAiD medications. There's one in Longmont, Pueblo, and Grand Junction who can all fill the prescriptions and make sure patients can pick them up if that's what they want.

Kaiser Permanente has their own pharmacy as well. But the important thing for Kaiser and Denver Health is that you have to have gone through their programs to access those compounding pharmacies. The ones that are private, if there's a private physician that's doing MAiD for somebody, they’ll typically use Pencol or one of those other compounding pharmacies, for their prescriptions.

GDM: Is it expensive? How do people handle the costs of MAiD?

Katie Sue: So medical aid in dying, unfortunately, in Colorado, is not covered by Medicare and Medicaid which is very lame, I know.

In California and I believe, New Mexico MAiD is covered under their state Medicaid programs. But Medicare is a Federal program. So unfortunately, they don't like covering State-based legislation, especially for this. Kaiser is, I believe, the only ones that has been able to bill Medicare for it appropriately. So, their visits are covered because they're usually end of life conversations with their physicians, which is great. But for all of us kind of in the community like Denver Health and these private practitioners, it is typically out of pocket.

I know that the cost can vary at other places in terms of how much the appointments cost, how much the meds cost. I know that some programs, it's about $2,500 for the appointments, and then it's about $900 for the meds. So, it can definitely go up pretty quickly, and that's their discretion, you know this is a very specialized field, and for some it can carry some scary liability, even though we're totally protected. So, it makes sense that people have different pricing. But we like to keep ours affordable where we can. Right now, our program costs about $695.

I do know that the End of Life Options Colorado, they're a new nonprofit in Colorado dedicated to educating people about MAiD, they have an assistance fund specifically for the medication. And we have an assistance program at Denver Health. But if somebody's accessing the law outside of Denver Health and needs support, they can get help with the medication cost from End-of-Life Options Colorado.

Next week, part 2 of our interview will focus on the process of applying for MAiD and the MAiD program at Denver Health.