Medical Aid in Dying: Choice, Dignity, and the End of Life

Ana Safarian: 0:00

And we had a patient, which is funny, wrote us a Google review before he took the medication, which is like he must have been so happy to. He was very relieved that he was able to do this, so he wrote us a Google review, which is so cute. Wow! Yeah. So it's you know it's different variations. Some family members don't agree. Some, you know, spouses don't agree. But at the end of the day, it's patient choice,

Barbara Hament: 0:26

and they usually come around.

Ana Safarian: 0:28

They do. They do.

Barbara Hament: 0:37

Hello, and welcome to season four of Dementia Discussions. I would really like to take a moment to thank the guests who were on this past year, and to thank you, the listener. I really could not do this show without you. And over the past couple of years, some of you have called me. So I am encouraging more of you to pick up the phone and call me. I'm accessible, and I'm so eager to hear your story. I'm at 310-362-8232, or you can email me at dementiadiscussions.net. So again, thank you. I'm grateful for you, and so looking forward to another year of us being together. Hello and welcome to Dementia Discussions, the podcast for and about caregivers. You know, I say that each show, and I mean it. I truly mean it. This is the podcast for and about caregivers who care for someone with dementia. However, today I'm going against my own rule. I'm going rogue because I recently had Anna Safarian of Olympia Hospice Care on the podcast, and she said either during the recording or afterwards, that her agency is involved in something called medical aid in dying, and I was curious about that, and so invited Anna back. But have learned that unfortunately, this is not for people with dementia. So, with that said, Anna, welcome back. Great to have you here again.

Ana Safarian: 2:23

Good morning, Barbara. Thank you for having me back, and it's a pleasure coming back.

Barbara Hament: 2:29

Ah, thank you. So we spoke a little bit about medical aid in dying. You referred to as MAID M A I D, and so I understand that it is an end of life option, healthcare option that's been legalized in a bunch of states, and so maybe just start us off with your definition of medical aid in dying. I would love to.

Ana Safarian: 3:00

So the law passed back in 2016, where California was one of the states that it became legal. We started practicing it, I believe, that same year or 2017. So we've been doing this for almost 10 years. It's the patient's right to die with dignity. It's really, you know some people refer to it as physician-assisted suicide, but it's not. It's medically in dying, where the patient of their life, and if they do have a terminal diagnosis, they can end their life with the help of the hospice team and the hospice doctors, and get the cocktail, if you will, to pass the pass comfortably. So let's talk about that a little bit. So you have to be 18 years or older, right? 18 years or older. You have to be a resident of the state that you're

Unknown: 4:00

in.

Barbara Hament: 4:00

Okay, so you can't go to that state if you're in a state right now. If you live in a state right now where it's not legal, you cannot. You must be a resident. You must be a resident for up to three months. Up to three

Ana Safarian: 4:14

months. You have to be 18 years and older. You have to have some sort of diagnosis that says that you might not be around in six months, whether it's a heart condition, a stroke condition, cancer, obviously, whatever the diagnosis is. So

Barbara Hament: 4:33

you have to have a terminal diagnosis,

Ana Safarian: 4:35

but know where should it say Alzheimer's or dementia in your history, physical that automatically is fall pricey 100% So as long as the patient is cognitively aware of what's going on and they want to do this.

Unknown: 4:54

Oh,

Barbara Hament: 4:54

interesting. So have you had situations where the patient wants?

Ana Safarian: 5:01

To end their life, and the family does not want that. Yes, we've had we've had several cases like that where the spouse would not agree. Obviously, they want their loved ones to be around as long as they they can, but at the end, they all come to terms with it, and we always tell them that it's you know patient's choice, and if that's if that's what the patient wants and the doctor is qualifying them, it's their choice because they are the ones to sign off. So, what is the medication? So, how does this work? The way it works is we have different options. So we have patients that come on to hospice care knowing that they want to do maid. So they'll come on, enroll into hospice care, get the calls out of the way. We've had cases where patients have been on hospice for a while and then they decide they want to do the medical aid in dying. So we've had different cases, and the way it works is once they decide that they want to do this, it's their monoverbal. You know, they could tell the nurse,"I want to do the medical aid. So that's that's one verbal. Besides that, we need two phone calls with two different physicians. One is an attending physician. One is a consultant, which in our case hospice has both physicians.

Barbara Hament: 6:26

Okay, so even if you have your own physician and they're not in agreement, it does it's it doesn't matter because you have physicians that work with you.

Ana Safarian: 6:35

Yes, yes, yes. Our physicians do the FaceTime calls, so it has to be two calls between 48 hours. That's the law. So the first call can be done on a Sunday night at 5p.m. The second call needs to be done after 5p.m. Tuesday, and obviously it's different doctors. Once the second call is done and the doctor says yes. I have qualified them. They will call in the prescription to the pharmacy. If if we use a compounded pharmacy, get because they have to compound the cocktail, and then it gets delivered to the patient's house the next day or whenever they want to take it. You have

Barbara Hament: 7:18

two days. So from the first call with the physician, you have two days to think. Maybe not. Maybe I don't want to do this. Maybe I don't want the cocktail. And then you have to have. So you have to be consistent, obviously, for the second physician because you really want this. You really mean it. You really want to do this.

Ana Safarian: 7:37

Yes. Yes. I mean, you can do the first call. Let's say on a Monday, and then you want to do the second call the following week or two weeks later. It's up to the patient, but usually they want to get it out of the way first and foremost, and then they can decide when they want to take the medication. Actually, we have three pending patients right now. They've all done the calls. There, two of them are in a facility, so one of them wants to go to their daughter's house and do it there. So she'll be going there on Tuesday to do it next Tuesday. We have another one that's waiting for the son to come in from Chicago to say bye to her, and she'll do it. So it's pretty much planned out. And the only thing that hospice cannot pay for is medication. So once the pharmacy gets the order, gets the prescription, they call the family for payment.

Barbara Hament: 8:32

And what is the medication exactly?

Ana Safarian: 8:34

The medication I can tell you it has phenobarbital, it has digoxin, it has morphine. It has lorazepam. Hold on one second. It has lorazepam,

Barbara Hament: 8:48

and probably like an antiemetic or yeah.

Ana Safarian: 8:53

There's like different nausea. Yeah, and in the nausea medication, Zolfran, they take an hour before before taking the actual medication, so they don't throw up, and the cocktail is like a powder form, and you can mix two ounces of your. You know, we've had patients that used vodka in there, two ounces of your favorite liquid, with any liquid, any liquid, mix it up. The nurse will put in the cock. The nurse will put in the whether it's juice or whatever. Put it in the cocktail, mix it up, and give it to the patient to cocktail. Like, could it be alcohol? It can. Yeah, we could. You could like, as I said, we had a patient that had put that put vodka in there. So it's the patient's Choice, whatever whatever they want to use, whatever they want to put in there,

Barbara Hament: 9:46

and then how long after they ingest this cocktail do they die,

Ana Safarian: 9:52

Barbara? That's a very good question. Every patient's body is different. If the patient has been an ox. Or drug user, obviously their body is more resistant, so they'll take a little bit longer, and depends on the weight of the patient too. So if it's a frail woman, you know, it's not going to take long. We've had cases where it happens from seven minutes all the way up to 2022 to 24 hours. I witnessed one that took like 22 hours. Yeah, but patient is comfortable, not in distress, just in sleep mode. Because once they take the cock out, that's they fall into a deep sleep, and that's it. They don't get; they're not in distress, so so they die peacefully. Die very peacefully. Yeah, I had a patient where that 22 hours when she had her hair done, she had meals done, she was all dressed up. I was. I still remember this. It's cutest baby ever. She had her sons over and her daughter-in-laws over. Even her ex-husband came by to say bye to her, so it's planned out, and we've never had a case where the patient backs out and says, "No, I don't want to. So these are people who clearly have made up their mind. Maybe like they're in pain. Like, are they having? I don't know. Maybe cancer that's metastasized to the bone or something that's causing a lot of discomfort. They don't want to be in pain. They don't want their kids or their loved ones to see them suffer like that. Actually, a few weeks ago, when I went out to meet a patient that wants to do big, and I said, "You look beautiful. Why do you want to do this now? She goes, you know. She goes, I'm always in pain. She goes, I don't want to go down to the dining hall to have dinner anymore. She says, I don't want to be burdened on my kids. I don't want them worrying about me. I've done my life. Life has done whatever it needs to do. I'm done. So it's a different mentality, Barbara, and like when they want to do it, they want to do it. There's no turning back.

Barbara Hament: 12:07

They're very clear. So when you talk to them, they're very people are very

Ana Safarian: 12:11

clear. Yeah, they're very clear about this is what I'm gonna do. Actually, some of them start crying from happiness that they found somebody or an agency that really understands this law, because there's a misconception out there. There's like a stigma for medical aid in dying. People don't really want to talk about it. You know, I heard I had somebody call a few weeks ago, and she said I heard from this other person that it's not legal in California. I said yes, it is. Look it up. So people have different variations about medical aid and dying,

Barbara Hament: 12:44

right? Because I would imagine some people think that it's suicide, right? It's like taking your own life.

Ana Safarian: 12:53

Yes.

Barbara Hament: 12:54

So how do you differentiate?

Ana Safarian: 12:57

And that's another thing I want to say in the in the history and physical besides Alzheimer's dementia. If it's if the patient has tried suicide before, they don't qualify. If a patient has had suicidal thoughts, they don't qualify because the doctors look at all those paperwork before making the calls. This isn't just about like suicide. This is about medical aid and dying, where patient is in pain, patient is at end of life, patient is on hospice care. Anyways, it's a whole thing, you know. We have our social worker reach out to them, confirm that this is what they want to do. We have a pastor or a rabbi that reaches out to them to confirm. You know, we go through different different levels, we know the nurse will go out and make sure that this is what they want to do. So it's not just one person or the doctors qualifying them. We have to make sure that they're not depressed. Obviously, they would be a little depressed because they're dying, they're sick, but it shouldn't be like they're totally depressed when they have suicidal thoughts. This isn't about that. I see. I see. And do all hospice agencies perform medical aid in dying? No, no, they don't. Because a lot of nurses don't want to participate. A lot of doctors I know don't want to participate. There's a lot of hospitals that you know when the patient comes from the hospitals, you know, and they want to do medical aid in dying, the hospital will not write the order for medical aid in dying. The doctors do not believe in it. So there are. It's not all agencies that do it. They say they do. Some of them will say they do just to get the patient onto service, but then once they realize that the patient really wants to move ahead with this, they'll either find another agency to transfer the patient to, or tell the families they can do

Barbara Hament: 14:50

it. Are they afraid of the potential legalities? I mean, I would imagine, or they just don't have the physicians.

Ana Safarian: 14:58

I I believe. I mean, maybe a little bit of both, but I think it's more of the physicians and the team. I mean, we've streamlined medical aid in dying to the T, like our doctors, our nurses, our team. Like it's not an issue for us. We've done it in three days. We've done it in, you know, whenever the patient wants. So you have to be with an agency that knows what they're doing and what the legalities are. Yeah, and that endorses yes,

Barbara Hament: 15:30

yeah, medical aid in dying.

Ana Safarian: 15:32

And then one thing that I do want to say is when when the patient does pass away, the death certificate, because this is a lot of questions I get from the families. That's why I want to say it. The death certificate would not say they died because they did medical aid and dying. They died because of their condition of their diagnosis, whether it's heart.

Barbara Hament: 15:51

Oh, that's a good point.

Ana Safarian: 15:52

Yeah. Whether it's heart or it's cancer or it's renal disease, whatever the case may be. So the death cert does not say medical gig and dying, so it doesn't affect life insurance, health insurance, whatever, because we get those questions asked a lot.

Barbara Hament: 16:08

Yeah, that makes perfect sense because it would affect life insurance. Yes, because in fact, that really is why the person is dying because of their heart disease, their lung disease, their metastatic cancer, whatever it is. Yes,

Ana Safarian: 16:24

like we have a patient that's been on service for over a year, and a few weeks ago he called and said, "I want to do the medical aid in dying. So he started the process already. He's done, and we're just waiting for him to let us know when he ought to move forward. You know,

Barbara Hament: 16:39

so when he wants to move forward. What does that look like for you guys?

Ana Safarian: 16:43

Well, he's done his calls already. He just needs to tell us when he wants the medication delivered.

Barbara Hament: 16:49

Does that mean a nurse from your team goes to him?

Ana Safarian: 16:53

Once the medication is delivered, yes, our nurse will go out in the morning or whatever time they want to do it. We've had patients that want to do it at sunset or at sunrise or by the beach? It just depends what they what they're in the mood for.

Barbara Hament: 17:06

The beach, so like you can be out

Ana Safarian: 17:09

in the car. He did it in the car by the beach. Yeah,

Barbara Hament: 17:13

that's what he wanted, and then his body is brought to the morgue, or then

Ana Safarian: 17:17

they called him org to come get the patient. And

another thing: 17:20

this whoever does medical aid in dying needs to have that mortuary or their creation company in place, and then the company comes just like when you diet anywhere else. So the mortuary comes and picks your body up. I see, and you're pronounced dead by your nurse, or yes. So some families say, you know, tell us just have a nurse come, give the cocktail and leave, and we'll stay. And then we'll call when their face stop waiting, sofs can go on for nurse, and then call the mortuary to come get the patient. Some families want to do it all alone. They have directions on the bottle. They're like, we'll do it on Saturday when the whole family's here. We don't want hospice to be here. We'll just call you when he's or the patient has passed away. It's patient choice, and however way they wanted to do it. Some families do not want to be there. They say their goodbyes beforehand. They do not want to be there to see the, you know, the process, so that way, that's the case, and there's no family. Then we'll leave on your spy bedside until the patient passes away.

Barbara Hament: 18:30

And does it does the person dying? You know, I I worked hospice for a little bit of time, so it's hard to see someone die. The change in breathing, you know, sometimes there's agitation at the end of life. Does a person go through those those sorts of changes, or is like you're saying, sometimes it could last up to 22 hours? So,

Ana Safarian: 18:55

but there's no there's no distress, Barbara. There's absolutely no. There's so much medication in that cocktail where you're not coming back, and there's no distress. You're just in a sleep mode. You just, I mean, patients just sleep comfortably. Some might snore, but those are all signs of like you know you're you you're you're a nurse.

Barbara Hament: 19:21

Deep sleep, right?

Ana Safarian: 19:22

Sleep, and then you know, as I said, it just depends on the patient's weight, their their history, their history. You know, if they want alcoholic or drug user, it might be longer. So it just depends. And talk about the the medication has to be self administered. Correct. So that means they reach out for this cup with the powder. Yes, and they put it in there. They swallow. They put it in and however many ounces of fluid, and then we would give it to the patient. Patient needs to drink it pretty quick because. Once they stop because it's so bitter, so the nurse always tells the patient just just jug it down. But we've had cases where they've only taken half, and they go into sleep, and that's it. So it just depends. But usually the nurse would tell them to just drink it all the way down. You'll be surprised how excited these patients get to drink that high inflation, you would be surprised.

Barbara Hament: 20:24

They're so relieved. Finally,

Ana Safarian: 20:26

they they are very relieved. They are very appreciative of us doing this, helping them, helping them. They're at peace. Yeah, right. They're at peace. So we do it. You know, they can. There's different ways of ingesting the medication, so usual ways to drink it. But if a patient has a G tube, we've done it in the G tube, so the nurse will put it in the G tube, and the patient would need to like put their hand on it. I see. We've done it rectally. Folicoms as

Barbara Hament: 21:00

a suppository.

Ana Safarian: 21:01

Suppository, yeah. suppository, yeah. So rectally, it helps. It's much quicker. It happens much more

Barbara Hament: 21:07

sooner than the residues absorbed much quicker into the system. I see. So how do you assist when it's when you you're given a suppository? Do you just have to

Ana Safarian: 21:17

patients that don't have don't have

Unknown: 21:19

no

Ana Safarian: 21:19

capability of swallowing? I would say from my experience, 90% is ingestion regularly,

Barbara Hament: 21:27

like you know, by mouth,

Ana Safarian: 21:29

by mouth, or like 80% and I would say like 10, 10% rectal and 10% G tube. If the patient has a G tube, if the patient has a G tube, it's most likely going to be for the G tube, anyways. Yeah, so it's just the nurse or whoever is the family, whoever usually gives. Yes, yes. So the nurse will call the night before and kind of walk them through, like they can't eat anything eight hours before. Obviously, you know the nurse always says pick pick whatever you're craving to eat because obviously it's their last meal. So the nurse will walk them through everything before in the morning if they want to take the medication. Let's say 10 a.m. will say okay you got to take the anti nausea nine a. So it's like a process, but it's seamless. Yeah, I suppose it does. As long as you have people who are on board, hurrah! I think that's the biggest issue when you don't have people that don't want to be part of this for any. You know, some sometimes it's a religious reason, right? Like I in the beginning, I wasn't really into it too until you know, a patient told me, you know, if you were in my shoes, you would want to do this too, and that kind of like opened my eyes. I said, "Oh my God, she must be in so much pain for her to make that tiny comment. And that's when I said, "We have to be part of this if everybody's on board. So you learned without it.

Barbara Hament: 23:00

Yeah, I'm glad you you are too because I don't know of any other agency around here that's that would be for this.

Ana Safarian: 23:09

Thank you. And we had a patient, which is funny, wrote us a Google review before he took the medication, which is like he must have been so happy to. He was very relieved that he was able to do this, so he wrote us a Google review. So cute!

Barbara Hament: 23:26

Wow,

Ana Safarian: 23:26

yeah. So it's you know it's different variations. Some family members don't agree. Some you know spouses don't agree. But at the end of the day, it's patient choice.

Barbara Hament: 23:37

So they usually come around.

Ana Safarian: 23:39

They do. They do, they do. Usually, they do.

Barbara Hament: 23:44

There is an agency called Compassionand choices.org. So, if you a listener out there is wondering about medical aid in dying, please check the website. Very informative.

Ana Safarian: 23:59

You know, they're a non we say non non profit non profit organization. So if a you know if a patient calls them for any reason and asks questions, they always have like resources to refer them to, whether it's a dead doula or hospice agencies that do the medical aid in dying. So it's a very good resource, compassionate you know, choices is very choices. Yes, it's very good. Anna, thank you. Well, thank you for having me again, and it's a pleasure. If anybody out there is interested, they can always, you know, reach out to us. Well, even if they're not in California, just to learn about just to learn about medical aid to dying, correct?

Unknown: 24:42

Yeah,

Ana Safarian: 24:42

they can reach out to us, ask questions. We'll be more than happy to answer them. We're here. Thank you so much, Barbara. Thank you. I believe you'll stay.

Barbara Hament: 24:51

You too. Bye bye. All right. Bye bye. Thank you for joining us today on another episode of Dementia Discussions. If you're a caregiver or know someone who's a caregiver that would like to be a guest on the show, please call me at 310-362-8232, or go to dementiadiscussions.net forward slash contact and let me know. I would love to have you. Remember that you can follow Dementia Discussions on Apple Podcasts, Spotify, Google Podcasts, and many more. If you listen on Apple Podcasts, it would mean a lot if you would leave me a review. For any other information about this podcast, please visit me at dementia discussions.net, and please share this podcast with someone you know if you think it may help. Thanks again for listening, and I'll see you here again next time on Dementia Discussions.