Challenges and Considerations for Medical Aid in Dying

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 third of four blogs from that interview, which has been edited and condensed for clarity.

GDM: What advice would you give to people who are thinking about, MAiD, or who are MAiD curious?

Katie Sue: MAID curious - I love it! I would just do your research based on the state you live in. I think that's the biggest thing is that people don't know that it's legal here in Colorado which always kind of makes me chuckle. I'm like, “Man, we've been around for so long, and it's still not like widely known as it should be, you know?”

Did you know about palliative hospice and the fact that MAiD is legal in the State? And that even extends to other death things, like the fact that we have water cremation in Colorado, and body composting? There are so many cool things that are very easy to write down ahead of time. I just want to make sure I know the steps for these, so that when the time comes, I can have it.

But that also goes for people who live in states where MAiD is not legal. So, if you have a predisposition for illnesses in your family, or if you have the early stages of an illness and you want MAiD, it’s probably a good idea to figure out if you need to move or if you need to go to a state where MAiD is legal, and you don't have to be a resident.

I think that's the biggest thing - just pre-planning. And I think that's like the siren call of all people in death work - pre-plan.  Do it now. Much easier said than done, but just knowing what your options are is so helpful. So that would be my biggest thing, just educate yourself on the options.

And then number 2, while you're educating yourself, talk to your doctors or your nurse practitioners if you're in Colorado. The reason being you could access MAiD through your own doctor. You don't have to go to somewhere like Denver Health, although we love it, and we're happy to serve you. But it's incredible when your primary care doctor, who's known you, even if it's just for a year, someone who has potentially known you for so long, can be part of your ending as well.

One of our physicians at Denver Health actually got to be the attending physician for a patient he's seen for 30 years, he has a long history with this person, and it feels so much more “full circle” for both patient and doctor. So, asking that question early, “Are you a doctor that does MAiD? If you're not, do you have somebody so I can at least meet them?”

Just knowing where to go when that time comes. Because so many people find us too late. That's why I think one in four die before accessing the law is because they didn't know MAiD was an option, or they didn't have people telling them where to go to get the support they needed.

As an older sister, being a professional nag, I'm just a honey badger. I just always love reminding people of the steps and options available to them. “Do you want to do this? If you want to do this, you have to do it on this day,” or like, “Do you want to leave it at the pharmacy? Okay, if you leave it at the pharmacy, you have to call them 48 hours ahead of time.” So that that's part of it. Dr. Mason and I work really hard to make sure they know the process. But it definitely happens where people forget. They have a lot on their plate. They're dying. Their person is dying. And in those cases, we do bend over backwards. You know our pharmacists, I think they see my phone number, and they’re kind of like, “Oh, boy, what's Katie Sue got today?” But usually, they can figure it out to make sure that the person is honored - if not the same day, then, the next morning. So, we try to be as quick as possible, and I think that's a big part of it.

The other part of it is knowing the paperwork process. So, when you don't use a place like Denver Health or Kaiser, where I am very accustomed to hounding people about what paperwork is needed, these other doctors assume that the patient knows the process. So, I've had many patients be like, “Well, my doctor's handling it.” And I was like, “Are you sure?” I call the doctor and they're like, “Oh, yeah, I didn't fill out anything. I didn't give them any paperwork. But like, yeah, they did their 1st request.” I was like, “So, what about the written request? What about your consulting physician? Do you know where to send the script?” And then the doctor reveals, “I don't even know what the compound is,” and I'm like. “Oh, boy.”

So, educating yourself protects yourself as well as others and I think the written request is a hurdle that a lot of people struggle with. Just to briefly touch on it. It's a pretty specific form required by the Colorado Department of Public Health and Environment. It's not something that Katie Sue wants to create an extra step for. It's something required by law. The first has to be signed by the patient in the presence of 2 witnesses. Those 2 witnesses cannot be the medical durable power of attorney (MDPOA), or the healthcare team, or the hospice team, and only one can be a beneficiary of the will. When you think about somebody who's terminally ill, that's essentially their whole group that I just listed. Everyone they talk to is in that category, which is hard. So, making sure you know who you have to sign.

At Denver Health we saw that that was a need to find people to sign the form. So, we've created a volunteer program. We actually have volunteers in almost every part of Colorado who can sign the form as witnesses. We're still looking for Eastern Colorado, so, if anybody lives out there, let me know! But we have volunteers in Fort Collins and Colorado Springs and Canon City and Florence and Grand Junction and Montrose - all over - to make that hurdle a little easier, the reason is twofold. Some people don't have anyone in their circle to sign the form, but they also want to keep it private, especially in those more conservative areas like the Springs or in Montrose. They are very loving church communities, and they fear judgment. So, they want to keep it private, and they need those volunteers. The other reason is that people simply don’t have the humans available to support the request. They have their MDPOA (if that), and they need the support for the form.

GDM: What other challenges do you see that are that you're trying to work on to improve the process here in Colorado?

Katie Sue: I think the bereavement aspect is still in the works. I think there's a lot that these families and these next of kin need. Denver Health has one of only three support groups in the country for MAiD. Our support group is for anybody who had a person that took MAiD in Colorado, so they don't have to have gone through Denver Health, but their person has to have taken it in Colorado. The reason being that way there is a little bit of camaraderie in that they followed the rules in the State of Colorado.

Something pretty common we see in grief group is that they're not allowed to say that their person took MAiD. So, there's that complex grief of like, “My person did this thing where they chose their day. I have emotions about that, but I'm also not allowed to tell people.” It came up last night that people were at the celebration of life (for their person) and the friends are like, “I saw her 2 weeks ago. She looked fine. What happened?” And the person has to be, “Well, they died in their sleep,” which is not a lie, but it still hurts the heart, and you know, I think there's a lot to do in finding support for the bereaved loved ones of those who accessed MAiD.

GDM: When you say they're not allowed to say their took MAID, who’s saying that?

Katie Sue: So, it's usually kind of like a like a contract of sorts between the person and their loved ones, saying, “You know, I really don't want people to know I took MAiD, please keep it private.”

I often find the people that don’t wish to share are fairly religious, which is beautiful - they respect their partners or their friends in the church, and they don't want to feel that judgment. Typically, those people have also had extensive conversations with their religious leaders, so their religious leaders often know. But it's the congregants that won’t be told that the person used MAiD. 

They think this is a private event that is beautiful for them and their loved ones, and they don't necessarily want to share that with the general world.

And I think it also goes back to the fact that they want to be remembered for dying from a natural cause related to their disease. They don't want people to misconstrue, because people are sometimes the worst. We're just awful, you know. Everyone has their own perspectives and opinions. Someone on the support call last night said, “The trash will take itself out,” in reference to those who don’t support MAiD. If they think that it's wrong, then that's on them, and that's something that they need to reconcile with themselves. But for others it's just that they don't even want to have to worry about the trash being identified. They just want everyone to move on, and maybe not even remember them for how they died, but for how they lived. So, everybody's a little different.

Now, some people scream it from the rooftops. And again, I think it's definitely a split group of people who want to keep it private, because you know the person that took MAiD wants to protect their loved ones. And then there's also the group of like, “I am so proud that I got to access Medical Aid in Dying. I'm so relieved that I had this option. Please tell more people so that they don't have to suffer unnecessarily long.” Everyone who's going through MAiD has suffered in some way, but they're very proud of the fact that they got to access it. Their family is very proud of the fact that they got to access it and have this peaceful death.

GDM: Is there anything else that you want to make sure that people know about Medical Aid in Dying in Colorado?

Katie Sue: Just know your options, even if it's just a passing thought, think about what you'd want for yourself, and know the rules. I think that’s the really hard is part of my job - reminding people that there are no exceptions, there are no extenuating circumstances. I'm required to follow the law. And if our program tells you no or not right now, that's because we're trying to protect so many other people who are also accessing the law. And we know that every person’s suffering is different, and every person’s suffering is special.

But if you're told, not yet, or maybe not in this way, that there is support. You know MAiD is one of many options. It is not necessary to have MAiD to have a good death. This is something that was brought up in a training I was in recently. Death with dignity is often associated with medical aid in dying, which is a great term, but you don't have to have MAiD to have dignity in death. Anybody who dies has dignity. Anybody who dies gets to have some grace. Will it look different? A hundred percent, but it's just one of many options on the table, and there's a lot of ways to support somebody who's dying.

If someone doesn't choose MAiD for themselves, that's totally okay. If someone does choose MAiD for themselves and does it in a very unconventional way of like accessing the law, and then only gets on hospice at the end, ends up having a rushed moment of death, that's okay, too. But all in all, medical aid in dying is gorgeous and great and beautiful but is not the only way to have a good death.

That's great. Thank you so much. I really appreciate it.