The Dying Process with 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: Tell me what happens after a patient gets the medication? Do they just go home and mix it up themselves and take it? Or do you provide assistance? How does that work?

Katie Sue: Everybody is different. And I think, you know, it's really important to again offer options, but remind the patient that this is their special day. And also, we very kindly remind the patient, “Once you're asleep, we want to make sure your people are supported. We don't want them to feel stressed or alone.” So yes, while the patient might have one view of how it goes, we might have a different plan, for after they fall asleep, so that everyone feels safe.

But once the patient picks up the medication, it's up to them. Some of them put it in a lockbox, and they never use it. They just know that it's there. They love having the peace of mind. Other people set a specific day where they will plan a whole celebration. One of my most beloved patients had a Broncos tailgating party. Everyone had to wear Broncos gear. There was a barbecue, one of her nursing assistants sang “Amazing Grace,” it was really cool. Then she had Denver Health mix the medication, and she took the medications surrounded by family.

Other people are very private. Some people are very comfortable with the idea of death and dying, or they've just lived private lives. They just want to have their spouse or their sister, or whoever it is, in the room with them. And that's okay, too. No one medical is required to be there. I think that again is important for advocating for patients.

I think there's a curiosity about MAiD, and it's so beautiful, who wouldn't want to be part of that and have that good image? But we do need to be respectful of the attendee list. You know, the attendee list can get pretty out of hand pretty quickly. That's part of my job - ensuring the patient feels good with the people that are in the room, and that they feel empowered to either say it themselves or delegate to someone, usually me or a death doula, to say, “Hey, I think there's too many humans in here. What if some of us stepped out so that it remains a good environment for the patient?”

Denver Health is very lucky in that Dr. Mason and I can attend the deaths. And as of right now, we do it free of charge - that might change in the future. But Dr. Mason is able to assist and mix the medication, which is great for families. It's quite the mental mind block to think about making medication that will inherently end your person's life. So that is a huge weight lifted off their chest. If we can help with that, it’s a nice gift.

Families have reported they like having someone there who has seen the MAiD process, so they know what to expect. It is a very graceful death, but it is a death. It's an expedited dying process, so something that might be normal to you and I because we work in this field, could be very scary to someone else, especially with MAiD.

When they drink the medications, number one, it doesn't taste good. So that's always the 1st comment, “Oh, that's gross!” Some people get burning in their throat, which can be disconcerting.

Once they do fall asleep, for a lot of people, their body just forgets to breathe. It's such a shock of medication that they can often hold their breath, and their face will turn pretty bright red or purple. That's scary. It's scary to see your person change color so quickly. And that's where Dr. Mason and I can normalize it, their body is just reacting normally. “As you can tell, they're not clenching their jaw, they're not furrowing their brow. Their face is just a different color, and they'll likely take a big breath of air that might be scary for everyone in the room, or just surprising in itself,” and almost always our patients do that, and it's almost a comic relief. Everyone's like, “Oh, my gosh! I didn't think you were going to be right. But they did take that breath, and it was a little bit scary.”

And then they go into that sleeping pattern which I think is a lot more normal. What I've seen in terms of death, you know, just gauging the grief that you see in the room, the minutes before and the minutes after drinking the medication - that's when the most intense emotion is going to happen. That's when the heaviest crying or just silence or numbness can happen. The questions can be really severe, “Is this normal?”

After 30 minutes is usually where people are able to take a breath themselves. Ironically, I find a lot of people hold their breath while their person holds their breath, which is not great. But they're able to kind of have that contemplation, and it's still fairly quiet, those first, 30 minutes to an hour, but they're more comfortable. And then, after an hour, it's like a visible weight has been lifted. If their person hasn't already died, they're clearly comfortable and on their way. And that's where you know people stand up to go eat something. They'll start playing music. They'll start laughing and telling ridiculous stories of their person from the past. So, there is kind of a trajectory. Everyone is different, of course, but that's been kind of the normal routine we've seen with our people and grieving post ingestion.

GDM: How long do you find that it takes for the medications to work after ingestion?

Katie Sue: So, after ingestion again, everyone's different. There's a lot of variables that play into it. The person's age is a pretty big one. At Denver Health we've observed people who were 26 which is, you know, devastating in its own way. But a 26-year-old is especially devastating.

The health of a person is another variable. So, we have a lot of really healthy people here in Colorado, all those wild people doing fourteeners and running marathons. I don't identify with that, but good for them. So, they have very strong lungs. They have very strong hearts; minus whatever disease they have. That's a factor. Liver function is a factor because that's where the medications are metabolized. All of these things kind of play into each other. If somebody has COPD and their lungs are pretty diminished, or if they have pretty intense heart failure, all of those things play into it. And then there's just the human spirit. So, every single person is different.

There was one person recently where, in my head, I was confident like, “Oh, he's going to last under 2 hours,” like he has all the things that tell me it's going to be 2 hours, and he hung on for 5 hours. So, everybody is different. But the American Clinicians Academy of Medical Aid and Dying, created a pretty handy graphic, recently showing the averages for how long death after MAiD ingestion takes. 80 percent of people die in less than 2 hours from ingestion, which is great. I think 2 hours is a really beautiful amount of time, because it gives people that moment to be reflective before they pass. The next large percentage of people, I think it's like 12 percent, die in 5 hours or less, and then about 4 or 5% take between, you know, 6 and 20 hours for their death. So, most people take 2 hours or less. That 2 hours or less includes people that die really quickly. There are quite a few patients where, they take the medication, and they pass within 15 minutes. And that in itself can be hard. So, we try to prepare patients for both. It could be that they take the medication, and they just pass, or that they take the medication, and they're with us for quite some time. So, we want to prepare for both.

That's why we usually tell people it's better to take the medication in the morning, that way you have more support. Not to say that there aren't night owls happy to come on out. But if you're on hospice, if you have a death doula, if you have Katie Sue and Dr. Mason, it's so much easier for us to be present for you if it's still during business hours. And that way it’s the routine team that's coming out, not to discredit our on-call peeps, but they have so many things that they have to cover in a night. We want to make sure you have a team that's really dedicated because this is an intentional act. We want you to feel supported as well as your next of kin. So that's why we usually recommend doing it in the morning. That way, if it does take 5 hours, it's still technically daylight hours, because, as you know, as a death doula and someone that's been around death and dying, you know, once someone dies, it's not quick. The hospice nurse has to come out. They have to call the coroner. They have to call a mortuary. Then the mortuary is 90 minutes to 2 hours, so it could be a very long day if we're taking the medication in the evening. All that to say, if you want to take your medications at night, that's your prerogative, and you are allowed to do so, that's the cool part.

GDM: Thank you. I really appreciate you going into so much detail about the process, because a lot of people don't know what it is, and so the more we can talk about it the better it is.

Next week, part 4 of our interview will focus on challenges and considerations for MAiD