In a very candid and poignant conversation, Bill Andrews’ sons share what their dad’s end-of-life experience was like for them. Hear how they worked as a team to help their dad have the best death.
Note, if you haven’t already listened to their father’s episode, please click here to listen to Bill Andrews share why he chose to end his life after battling ALS.
Dr. Bob: This episode is a follow-up to a previous podcast with Bill Andrews, a patient of mine who ended his life on October 23rd, 2017, using The End of Life Option Act, also known as Physician Aid in Dying, or Death With Dignity. The law, which became effective in California in June of 2016, allows a competent adult resident of California with a terminal illness to request from their attending physician a prescription for medication that will end their life in a peaceful and dignified manner.
Bill Andrews had ALS, also known as Lou Gehrig’s Disease. He was a surfer, a thrill-seeker, and an adventurer prior to the onset of this illness. He also was a devoted son, father, and grandfather. I recorded a podcast with him four days before he ended his life. Two of his sons were present for that interview, as well, and all three were with him when he died a few days later.
I invited Bill’s sons, Chris, Eric, and Brian, to join me and share what they had learned from this experience, and to help carry on their father’s legacy by helping others understand more about what it’s like to help a loved one through the Aid in Dying process.
Bill was a pioneer, and he was also a humanitarian. He wanted his death to have value for others, which I’m hopeful that these podcasts can help accomplish. This discussion is fairly graphic and detailed. Some people may find some of the content uncomfortable. Others will find it gripping and refreshing. I found it incredibly inspiring, to hear the words of these intelligent, thoughtful and grieving young men as they share what they went through as a family and honor their father, Bill Andrews.
Please share this with others who may benefit and feel free to head to my website, integratedmdcare.com, for additional information and support and other topics related to life and death.
Welcome to another life and death conversation. This is Dr. Bob Uslander, your host and the founder of Integrated MD Care. Today is gonna be a bit of a different format, we’re doing a group podcast, and I have a few gentlemen here with me who I shared a pretty special experience with just a couple months ago. I did a podcast interview with Bill Andrews; you may have listened to that one. Bill was quite a character, well loved and well respected, a gentleman who made the brave decision to end his own life after struggling with ALS for several years.
I did an interview with Bill just a few days before he did end his life and he did it in the company and the presence of his family, and his sons, Brian, Chris and Eric, have decided that they wanted to speak and share their perspective and help others who may be trying to figure out how to navigate this terrain and how to support each other and their loved ones through this process. So I’m grateful and very please to introduce you to Brian, Eric, and Chris Andrews. Thanks for being here guys.
Patient Son: Thanks, doctor.
Patient Son: Thank you.
Dr. Bob: Okay. There’s a lot of things that we can talk about. There’s a lot of different components to this, but one of the things I want you to share … And you were on that podcast when we talked to your dad, and we got a little bit of your perspective on that, but he was the star of the show. You guys were in the background, but it was nice to have that. Now I’d like you to, in memory of him, in honor of him, we know that he was very, it was really important to him that people understood that this was an option and they understood why he took this option. Why he made the choice. From your perspective, can you share a little bit about why you felt it was so important for him to share his story?
Patient Son: This is Brian. Dad loved being a pioneer in life. He liked being out in the forefront doing things in business that were new and innovative, and in his action sports lifestyle, surfing big waves, motor crossing areas that people had never been. I think he really felt good about being a pioneer and doing something here that was newly available.
Dr. Bob: Okay.
Patient Son: He really wants people to hear his story, and he was really happy to have done that, the podcast with you, and he really wants to get this information out for people considering this.
Dr. Bob: That’s cool. It’s interesting to think about that, the pioneering spirit. I relate to that. I’m kind of, as a physician, a bit of a pioneer in this realm. Of course, had he not been dealing with a terminal illness that was challenging him every day and getting worse, he probably would have found other ways to pioneer, right?
Patient Son: Yeah.
Dr. Bob: But this was an opportunity for him to take his own experience and what he had to deal with and go through and hopefully allow others to benefit from it. So, not just being a pioneer, but being a humanitarian, I think.
Patient Son: He’s always loved helping people and helping to share wisdom and teach and coach. That’s just the kind of guy he was, so yeah, this is good.
Dr. Bob: Yeah. How long before he actually, his life ended, did he start talking about this being an option for him?
Patient Son: I don’t he knew it was an option to be honest with you 100%. But I think it was something that we discovered along the way, and it might have been Brian who brought it to his attention as an option to look into.
Dr. Bob: Okay.
Patient Son: We were reading all about ALS and how it was gonna end. But the question was when and how right? So we were just learning so much about it and reading about it and meeting people, going to support groups. You know at some point it’s gonna end. The average time was supposed to be two to three years, and so we didn’t know how long. It turned out to only be, from diagnosis, it turned out to only be a year for dad. Through that journey of reading about that we read about this option and talked about it.
Dr. Bob: And so you discussed it with him. Did you guys discuss it with each other first?
Patient Son: We did. We shared it with each other and just, you know, it was earlier on. I think that was maybe in the first month or so after his diagnosis. It was around the holidays a year ago. We had read about that and said, “Well, this is something we should keep our eye on.” We knew we were going to go through a journey together. We just wanted to have that as something to learn about and so we did. I think dad was also reading on his own and I’m sure he read about it as well. It’s something we ended up talking about together.
Patient Son: ALS was not something that I think any of us knew anything about prior to his diagnosis. It’s the type of thing we all had to be learning about as we were going through it. We were also trying to form opinions about it as we were going through it. I think that when Brian came across the Death with Dignity website, and there were some other materials that kind of lead us to that path to look at that.
It wasn’t like, “Hey, what do you guys think?” It was just like, “Let’s just read this and try and understand this a bit.” The whole process was a lot of like learning, talking, digesting everything. Like facts, emotions, decisions, kind of all doing it simultaneously. But yeah, we really, it was something that we brought to his, for him.
Dr. Bob: Which is unusual. You don’t have much other exposure to this, but it’s unusual that families bring it to a person. In my experience, most of the time, the individual is the one who has been either, for years has been kind of secretly knowing that if things got to a certain point if they develop these challenges, that they would want to look for that out. But most of the time, the family members bring … the patient, the one who’s dying, brings it to the family members and they have to try to convince the family members that it’s the right thing for them. That’s what I see more often.
I think it speaks a lot to your relationship with him and your level of love and trust, that you felt that you could bring something like that onto the table and talk about it as a family looking at all the different options that were out there. This is never the first option. This is never what anyone is hoping for. It’s always after exhausting all the other possibilities. But as it turns out in many cases, it’s the best of the various options that are out there.
So you guys, at what point did you speak of this to a physician? At what point did, and I know, but for the listeners there, what was the path that was taken once it was discussed as a family?
Patient Son: We had seen one of dad’s primary physicians, and they had a good relationship with one another. End of life, quality of life was a big conversation between those two, especially within the last year. We weren’t a part of those conversations until recently when we started going to the appointments with dad, you know, having to take him there and so forth.
So being there gave us exposure to some of those conversations, and it was no surprise to his physician, approximately two months before dad left us, that we went to him with that formal request. He was ready for that call.
Dr. Bob: Okay. And even though he wasn’t necessarily familiar with the specifics or how to put things in place, he was receptive and willing to support your dad through that?
Patient Son: Very much so.
Dr. Bob: Great. I know that that’s … How long was it between that conversation and when he reached out to me? Do you have any idea? Was there much time lapse in there?
Patient Son: Yeah. He doesn’t know the exact time.
Patient Son: I think it was about four to six weeks. We had the conversation saying, “We’re ready to move forward.” We had some learning to do on our side that took some days and some weeks. Our physician wasn’t familiar with the process whatsoever, so he needed to do his own research as well. Two, three weeks went by, we realized together, with the physician, that we were at a stalemate. It was at that point that we decided to explore other options and getting some additional help, and that’s how we met you.
Dr. Bob: Great, yeah. I had met him. I had a prior relationship with this physician. He, I guess put the word out that he was looking for someone who knew more about it.
Patient Son: He did.
Dr. Bob: And then we connected, and I think it worked out well. He got to be involved, as everybody wanted because he had that relationship and you got the benefit of working with someone who knew how to get you down that path.
Patient Son: Yeah, you ended taking over as the primary and then he took over as the supporting physician.
Dr. Bob: Right, it worked out really well.
Patient Son: It worked out great. Everything was smooth once we got rolling on that program.
Dr. Bob: And he deserved that, he deserved smooth sailing because there’s a lot of folks who start down this path and they just hit one roadblock after another, one obstacle after another. And either they struggle for longer, or they often get passed the point where they can even take advantage of this, which is really unfortunate.
Patient Son: We actually had that as a time constraint, because dad has the ability to walk and his arms were getting really weak, and his hands, gripping was getting weak. We had to start hand feeding him in his final week. So it wasn’t too much time left because he could life a cup with a few ounces of weight and drink when he needed to do, even do any other way to self-administer. Self-administering was a requirement, so we had a time horizon that was limited. So we were getting a little bit, a little nervous about that as time marched on, which is another reason we contacted you to help get things moving.
Because he really wanted that, he had talked about having three options. He could just let the disease take his course and he’d starve to death and wouldn’t be able to breathe. He didn’t want to go through that, but that would have been his second choice. The other option was to be kept alive through any medical means possible, feeding tube and ventilator. He did not want to do that. So that’s what knew right from the beginning, he did not want to be kept alive, didn’t want to be bed-ridden, didn’t want to be having this, any medical means to keep him going. Because he lived a great life, and he was ready to go, so that was the last of the options, and this became his leading options hands down, was to take this California End of Life, with a graceful ending on his terms, not having the disease run its course all the way to the end. He was getting very close. We were only I think a few weeks away at the most.
Dr. Bob: As things were changing?
Patient Son: Yeah, things were changing pretty fast for him.
Dr. Bob: Yeah. I know that it’s hard to even imagine how frightening that would be. Even though he knew that he had plan B, but he knew that that was going to be difficult for everybody. It was going to be challenging for him, and it would have been difficult for the family to watch somebody going through that. So I know that he was very, very determined to be in control. We know that he set a date, and setting a date is probably a bit challenging because you have children who live in different parts of the country, and he wanted to be accommodating.
He wanted to make sure that everybody could be there and participate, but he didn’t want to push it off too far because he was worried about the possibility that he would lose the ability. He also didn’t want to cut offany more of his life than he had to because he loved the people who were around him. He still loved life; he just hated the circumstances. So when I talked with him, he was four days out from the date that he had set. We knew at that time that he was not going to change his mind, he was determined. Can you talk a little bit about what it was like from your perspective to be setting a date for your father to be ending his life?
Patient Son: That’s a terrific question, Chris. Do you want to start Eric?
Patient Son: Yeah, I feel like jumping in. I think this is sort of like the piece that was … I think were saying it was a little morbid, but it was also really amazing. It ended up being fascinating. Typically, when someone dies they die, and then they’re gone, and you have to deal with everything all at ones. You have to deal with your emotions and the planning and logistics. You have to deal with everything all at once. But what this afforded us was an opportunity to chip away at all these things.
We knew his day was approaching, so we all knew that we could say our goodbyes. It also meant that we could be emotional one day and they be very pragmatic another day, and just say, “What should we take care of today?” Because we had time, we didn’t have to deal with it all at once. You could deal with it as you were leading up to the day. It was really comforting. It gave everyone the time and the space to wrap things up in a way that we all needed to individually.
I always tell people, it’s like a really weird experience, but I got to write his eulogy and then read it to him. There was one part that I didn’t say very well, and so I actually rewrote a part of it and then read it again to him. No one gets to do that. I thought that that was a really special opportunity that this afforded us, that I found fascinating.
Patient Son: His, dad’s terms were reverse engineering. He was an engineer. He liked planning things. His goal was to pick a date that would work well for the family. Once we did that, then all the other pieces fell into place. So picking the actual date was pretty easy for us, because dad was not doing well at all, getting worse day by day, having a harder time day by day, so the sooner, the better.
He wanted to take advantage of the quickest it could happen, you know after the process, which was about a little longer than two weeks, 14, 15 days, something like that. So we worked together, the three sons and dad, to pick a date that would work best for everybody. Then, from there, worked backwards to what he wanted to do and what we wanted to do leading up to that date.
Patient Son: Cool. Eric, you should tell him about the day before, like what …
Patient Son: Do you want to get into that or some of the things that happened before then? [crosstalk 00:19:41]
Dr. Bob: No, no. I think it would be fascinating, but do you have anything you wanted to add-
Patient Son: Yeah, I’ll comment on the date.
Dr. Bob: … about setting the date?
Patient Son: Yeah, it was a powerful, impactful moment to set the date. We bounced around on phone calls and texts, trying to pick a date. Dad, when he was ready, he was ready. He was, “As soon as possible,” but I want to make sure it works out for all of us because we have our families and birthdays and holidays. He was ready to go, time off work. He was really concerned about a date that would work for all of us, but he was ready, so of course, we wanted to accommodate him with as early as we could pull it off. So we bounced around a couple of dates.
We had one and then we actually switched. We had to have Chris come out from New York, and thinking about your family when they would come out. I would just say that it was a heavy moment to set the date, but also it was very freeing at the same time because we did have it on the calendar. We circled that date, and then we could reverse engineer it and start to plan all these activities. So it kind of gut us unstuck and it started some real positive moves to happen, to have that. But it was powerful.
Dr. Bob: I imagine it amazing freeing for him too.
Patient Son: It was.
Dr. Bob: I mean it sounds … I think that I hear families talk more about how knowing the date makes it more real, and sometimes even more uncomfortable. You guys are unusual in that I get the sense that you guys are all, you were so deeply connected with your dad that you were experiencing this as he was experiencing it, not separate. I mean yeah, you have to think about how it’s going to impact you and deal with those feelings, but I really felt like you completely put him first, and that was the only thing that really mattered, was making sure that he got what he needed to get, and with as little interference or struggle as possible.
Patient Son: Yes, it’s very true. I think we’re just like every other family; nobody’s perfect. We’ve all had our disagreements throughout the years and certainly some tough times all growing up; things weren’t always perfect. But the disease brought us together, and then this decision brought us together even closer, which was fantastic.
Dr. Bob: Cool. That’s a gift.
Patient Son: It was. We all had our own unique relationships with him for sure. When the disease diagnosis was given a year prior, we said, “We’re going to really bond as a team.” We had a team name, Team Keep Paddling, dad’s a big surfer, right? So he always said, “Just keep paddling. If you ever want to give up, just keep reminding yourself to keep paddling. One more wave, paddle, don’t give up. Bust through the white water and get out there and catch that last wave.” So that’s what, we formed our team name, and we were all about being together. It’s actually the best team I’ve ever been on in my life, in any sports team or work team. This team, this Team Keep Paddling, was the best team I’ve ever been on.
Dr. Bob: That’s wonderful. I just had an image that came to me. I’m sure that your dad taught each of you to surf. Whether you kept surfing or not, at some point, I imagine that he’d spent his time pushing you into the waves and getting you up there. I just had this image of you guys, because he couldn’t move, he couldn’t walk, he couldn’t do it, that you guys sort of pushed him into the wave.
Patient Son: That’s really good.
Dr. Bob: [crosstalk 00:23:31] into that final wave.
Patient Son: You’re right.
Dr. Bob: And he rode that wave in.
Patient Son: Something I think the three of us did really well together, was that I think when this first started, there was a lot of, “I, I, I, I,” type of thing. “I feel this way. I might do it this way,” and so forth. Then you, as time goes by and the situation gets worse, you tend to … well at least for us I think it became more about dad. You know, what he wanted. It was crystal clear towards the end that all the decisions that we should make were in his best interest and making sure that he could go out the way in which he wanted. We’re very proud of our team work together to support him. He was so happy at the end. We can live the rest of our lives knowing that we did the right thing for him.
Dr. Bob: Yeah, and you created that piece for him in that place, and part of that was that you guys were coming together and working in that way and that you always … I’m thinking about my own experience with my parents and how that affected me, but now that you know what it feels like to fully support someone, to remove your own needs from that, it affects everything. You can never un-know that. You always recognize that there’s a part of you that is able to completely forget about your own needs and put others first. This is potentially the culmination of that, but it changes us, right? When we do that it changes us, and all of our other relationships going forward are influenced by that, which is pretty cool. So that’s another gift. His gifts continue to be apparent.
Patient Son: Yeah. You’re right.
Dr. Bob: So you guys, you alluded to this, and I definitely want to talk, you created, the whole couple of day leading to and including the day of his death were pretty incredible. You want to talk a little bit about that?
Patient Son: The things towards the end that were very important to him, which they were forever just reinforced a little bit, were some time with his sons, some time with his family, some time with his grandchildren. So the day before he passed we set it up so that the grandkids could spend some time with him in his room as residents. We weren’t sure how that would go so we just kept bouncing ideas off each other about what would be comfortable for everybody. We thought just opening the room up and letting the kids run around and play and be themselves was the right thing to do, because that’s what they’re good at and that’s what dad wanted to see them do. We had a couple activities. One of which was we made a t-shirt for dad that we would were the following day.
Patient Son: It was his idea.
Patient Son: It was dad’s idea, right. Why don’t you talk about the shirt?
Patient Son: [crosstalk 00:26:53] told you.
Patient Son: We thought this was really special. He’d said … We were actually trying to talk … He wanted to know who should be in the room the day that he was actually going to go through with this. We talk about it, and he said, “Well … ” He’s like, “Obviously I don’t want the grandkids in the room.” He’s like, “What would be amazing is if, when you guys bring them over to play, bring a white t-shirt and some paint. I want them all to put their hand prints on the t-shirt, and I’ll wear it.
That way the next day I’ll feel like they’re in the room with me.” It was super sweet, and so we did that, as part of the day before. We had the kids come over, and they thought it was a lot of fun. But maybe they didn’t realize at the time they were actually making him a really amazing memento. And then Eric had another amazing idea… He bought a plain white sheet, and he bought a ton of fabric pens and paints. He had all the kids; it was Eric’s idea, he had all the kids draw pictures, “Just draw whatever you want.” Whether they knew it or not, the age range in the room, how old is Paige? She’s 10?
Patient Son: 12.
Patient Son: 12. The kids ranged from two years old to 12 years old, and they were six of them. We put a big tarp out and the thing, and they all went to town on it. After they were done, they got in a little line and one by one they brought … We put the sheet over dad and one by one they each pointed to their artwork and explained what they drew and why they drew it for him. What was really special is that we didn’t really say, we didn’t say, “Draw something intense,” but they all I think were feeling the moment, and they did in their own ways. Each one of them got to express through pictures something for him. At the end of the day, he had a t-shirt to wear and this beautiful artwork on a sheet that he go to bring with him the next day.
Dr. Bob: When I went over that next day, he was beaming. He was so proud of what he was wearing and just talking about that experience from the day before. That was brilliant. That was brilliant.
Patient Son: In addition to seeing the kids and spending some time with them, he also had a couple places that he wanted to visit one last time. Two of which were his favorite beaches, where he wanted to get down there and smell the air one more time, see the waves one more time. We were able to make one of those trips, the other one he just wasn’t feeling well physically to go down and make that trip. But we were able to get down to the beach. He wanted to see his grandkids and some sporting events, so he came and watched some flag football, some baseball, some gymnastics. That was important.
He had some great meals towards the end; he would eat whatever we want, so we were bringing him things from all over San Diego, some of his favorites. And then also spending some time with his brother, his sister, his mom, close family, as well as some of his dearest friends. He had hundreds and hundreds of friends, so many he knew so well. But there were a handful in particular that he wanted to have some special conversations. So there was a lot that happened. He was able to cross off just about every single thing on that list within that short window of time that we had, or that he had, to be able to follow through this way.
Patient Son: I think Eric told you, dad reverse engineered things. So he knew that on the day, it was not a day for goodbyes, it wanted it to be just a business day, where we just took care of things. The day before he wanted to see his grandkids. The days before that, he leaned on us to basically setup times for people to come through. It was very organized. This is exactly the way he wanted it.
Patient Son: Went through all the pictures and he explained where places where and who people were. All that was just quality time.
Patient Son: One cool think he did that I thought was really special too is he talked about time a lot in the end. When we picked a date it sort of made time more real, but he often said, beyond this, that time is the greatest gift. In the context of running towards the date that he picked, time became more real. But one cool thing he did was he recorded a bunch of things. So he had, I don’t know, a checklist of 50 recordings that he wanted to do. He wanted to say something to each grandkids.
Patient Son: His own voice recordings.
Patient Son: He wanted to something to his friends. He had all these things that he wanted to get out. Obviously, he couldn’t write anymore, and so he recorded his voice. But again, having that time, having that date is what enabled him to feel like he could accomplish something. Like, “Alright, I’ve got to see these people and do these things and make these recordings, and this is what I’m going to do.”
Patient Son: While he had a completely sound mind and was full of life mentally, just the body was breaking down. But we got to take advantage of that all the way to the end. Completely sound mind and great conversations, all the way to the end. That was a gift.
Dr. Bob: Incredible. It’s incredible. I didn’t know about those recordings. I do know how structured his time was towards the end, because I had to come out and make another visit with him, and I had a short window. I was fit in between a whole bunch of other people there. I was like, “Come on, I’m the important one.” Apparently not. Anyway. Talk a little bit about the last day. I think it’s important for people to hear what that experience is like from the perspective of those who have helped to allow it and create it if you’re comfortable with that.
Patient Son: Sure, yeah. I mean, it was surreal, being the last day, for sure. He had hospice care. They were amazing, amazing people. They came by and gave him a shave and a bath. He smelled like a rose.
Patient Son: He spoke very complimentary about the people who bathed him and supported him.
Patient Son: Yeah. They were phenomenal, really amazing people. So, he got clean, he got dressed in his shirt, and he had the sheet. We had some time together in the morning to have a few more conversations, but he wanted to keep it pretty light that day. He already felt like he had said everything he needed to say, so that last day was just being together. We played some music, some of his favorite songs. We ordered the prescription. That prescription was delivered on that day. It’s how that works.
Between the order that you put in for that prescription, and they made the delivery to us. That kind of dictated our time window a bit. We didn’t have the luxury of having that medication already in hand and waiting for that. So we had to make that happen all that day. But they were great as far as getting that to us pretty rapidly, just a couple hours and we had the medication in hand. Then we had planned to have everybody over. We had his mom and his brother and his sister and our mom and the three of us together all day. We had everybody planned to come over at a certain time once we had time to get the medication.
Dr. Bob: You guys want to talk a little bit about that final hour or so?
Patient Son: His last day went as good as we could have scripted it, I guess is the most important thing. I agree when you say he wanted to keep it light and so forth. For me personally, it almost … I hope this doesn’t sound cold, but it felt almost as if a formality, because we were able to spend quite a bit of time with him leading up to it, having a chance to say everything that we wanted to say.
So that day became just being there for him, as proud, encouraged and strong as he was, he was probably feeling scared, although he’d never admit it. So it was just letting everything go and just being there for him and holding his hand and just telling him a couple more times how much we loved him, and then supporting the other ones in the room who had a tough time with it. Just kind of being there together, and luckily you did a great job for us, where we didn’t feel any sort of stress. It just felt calm and the way it was supposed to go, I guess. I’ll remember those things, that it was a beautiful day, it worked out perfectly, wouldn’t have changed a thing. It all happened pretty quick.
Dr. Bob: Were you nervous? Were you nervous about things potentially going badly? Is that a thought that you had?
Patient Son: Me personally, no, because I didn’t know enough about the medicines or things to understand the true percentage of them not working or something. The family, we were all so communicative together that I knew there would be no outburst or something emotional from anybody in the room. You’re always a little nervous I guess in any situation, especially one like this, that it might not go well. But I was so confident and feeling so good for him at the time, that it erased any stress I think leading up to it.
Patient Son: I would just say thank you to you too. I think having you; there was … as I understand you don’t have to have a-
Dr. Bob: No, there’s no requirement to have a medical person there.
Patient Son: That would have made me nervous of think. Having you there with us was really …
Patient Son: Yes, agree.
Patient Son: I don’t know, it was calming and assuring. It was really great for you to tell everybody in the room too what to expect, here’s what’s going to happen, as we get rolling. It calmed a lot of the … a lot of confidence that there was actually someone here who had done this before and this is going to be okay. I think without you I would have been more nervous.
Patient Son: Yeah, me too. Me too. We knew from you that the medications were going to work. That was undoubtable. So then it was a matter of what it would be like for us in the room and how gentle it would be. That’s what was an unknown. Dad was totally at peace. He had said even that three to five days prior, that was the most peaceful time of his life. He felt so confident and was looking forward to that day actually, this next adventure that he was going to go on free from his body with ALS. We all felt very positively about the day. We have had zero regrets and have felt good about it all along to this day. But he was at peace. With his mom there, she was 95 at the time; she just celebrated her 96th birthday. Everyone came over; it was about one o’clock in the afternoon.
We were going to give about an hour or so, a little over an hour, to just be with him, as with the larger family who were there earlier. So his mom came by, and his brother and sister and so on. One thing that was a little bit different for us is we have to prepare the medication. You explained this to us and were totally prepared for it. But with the medications, there’s an anti-nausea, those are done an hour prior. Then you get into the; in our case, it was Seconal we used. So we had to open up the 100 capsules. We did that together, the three of us. We got, banged through it pretty quick, it seemed like 20, 30 minutes maybe to do that, 20 minutes maybe.
But that was a process to go through. We had the family in the room, and we were going through and opening these and getting it ready. That was a little bit-
Dr. Bob: Distracting.
Patient Son: A little bit.
Dr. Bob: Yeah.
Patient Son: Yeah. We weren’t just sitting with him; we were opening these capsules and so on. But it was part of the process. We understand that there’s no other option right now. We knew that was a proven medication that was going to work and so that was the choice all along. It was just a process…
Dr. Bob: Chris?
Patient Son: Yeah. This is the only kind of negative part for me I think, was I didn’t know. I didn’t realize, that we were going get 100 of these capsules and have to break them open and empty them out. It was a little unexpected thing that I felt kind of threw off a little bit of the vibe because everything was so peaceful and we had confidence. All of a sudden, I don’t want to speak for you guys, but I didn’t feel 100% confident that I was doing it right or that, am I allowed to touch this stuff? Do I inhale this? It was a little weird for me in the moment.
And then, I didn’t really care until our grandma came and his brother and sister, and I felt like we weren’t done with that part yet. So I felt like they were seeing the sausage get made or something, and I was like, that part freaked me out a little bit because I would have rather that just been done. It was the one thing I felt like wasn’t exactly … I mean, it sounds really hyper about our schedule. But it schedule and that part was a little frustrating for me. I think emotionally it was a little weird too because I felt like I was really participating with kind of this medieval act of poison or something.
That part I didn’t love so much, but I think had we been able to do it earlier, not too much earlier but just earlier enough, where I didn’t feel stressed about it with other people in the room and …
Dr. Bob: I think … So, part of the comfort level and knowing what’s safe or reducing that stress, that’s on me. I could have certainly given you a bit more information. But now that I’m remembering, you couldn’t have done it earlier because of the timeframe. The medication was just delivered that day.
Patient Son: It was just delivered.
Dr. Bob: And he wasn’t going to wait.
Patient Son: I would have just told them to come later…
Dr. Bob: So for anyone who’s listening and you’re in the process of planning, this is something to keep in mind. And there is another medication. Just to make sure that it’s clear, there is another medication besides Seconal, and it’s called DDMP2, which is a combination of powders. It’s morphine and Valium and a couple of heart medications. But I typically don’t recommend that to my patients, because it’s not quite as proven, it’s not always as smooth and quick. You might have had a very different experience had he taken that because sometimes it takes hours, rather than the minutes that it took your dad to gently stop breathing. So there are other options.
I appreciate you sharing that because it’s part of the experience.
Patient Son: It was.
Dr. Bob: This is a conversation. We’re not trying to gloss over anything. We’re not trying to make it sound simple or anything other than what it is. This was a very; it was a very meaningful difficult, beautiful, challenging time. It was all of that. I will never forget your grandmother doing the hula.
Dr. Bob: She was incredibly special. Was that her idea?
Patient Son: It was.
Patient Son: Completely her idea. 95 years old at the time, and she spent a lot of time in Hawaii, spent 20 years or so out in Hawaii. So she learned hula out there, and she was a swimmer, very active and learned to dance. She had this idea that she was going to do this hula for him, to send him off on his next journey. So she stood at the foot of his bed. They had their eyes locked, and she did this amazing dance, stood up, she kind of leaned against the bed a little bit to steady herself. She did this amazing hula. Their eyes were locked, and dad looked so happy. He was just smiling, beaming. It was a beautiful moment. We all were blown away by that. But the connection they had, it was amazing.
Dr. Bob: Yeah, it was beyond description. And she wasn’t just dancing and granted this was a 95 year old dancing; it wasn’t-
Patient Son: Mostly upper body.
Dr. Bob: Mostly upper body.
Patient Son: Part of the hula, maybe people … I’m not an expert in this but it’s singing and dancing combine into a really beautiful choreographed moment. She choreographed not only the movement but also she wrote and sang her own song. The essence of the song was about passage, safe passage. It had a surf, nautical kind of thing happening. It was about letting him pass through. It was his mom, saying, “It’s okay,” and giving him that comfort like it’s okay. It was through beautiful hand movements and song. It was really pretty.
Dr. Bob: Yeah. And I believe it ended with, “And I will see you before long.”
Patient Son: Yeah. Yeah.
Patient Son: That’s right.
Patient Son: It was her way to say goodbye. It was very beautiful. Yeah, it’s crazy.
Dr. Bob: Yeah, and then he reiterated how incredibly at peace he was. I truly, as difficult as this is, to be part of these experiences, truly it’s incredibly gratifying to see the depth of the connection and to know that you’re left with this beautiful memory that you allowed him to have this peaceful end and to be in control at the end of his life. I thank you. I thank you for being here and for sharing this. I know it’s not easy to talk about, it’s still so fresh. Is there anything else that you feel really strongly that you want to share that’s coming up? Don’t feel pressured, I don’t want to end this with you having something that you think needs to be said.
Patient Son: Well, the actual, once he took the medication it was very peaceful. We weren’t sure what to expect. It took 19 minutes from start to finish. He was asleep within a minute or so, a minute or two at the most. Very, very peaceful. He started out with just a relaxed breathing, and it slowed and slowed and drifted off. It was very peaceful. We were all gathered around him and holding him.
It couldn’t have been better from that perspective. We’ve always felt good about it; I guess that’s a true test. Two months later, here we are, and we’re feeling like it was absolutely the right decision for him to make. We were happy to be a part of that for him, to support him, what he needed to do given the scenario. Thank you, Dr. Bob, for helping us with that.
Dr. Bob: It was my honor.
Patient Son: I would add to that, that since this has happened a lot of people have asked about it. Telling people about this is cathartic because it kind of helps to tell. But it also makes me realize how little people know about the Right To Die Act. It’s something when you start telling them your story, they get very engaged, and they’re very interested. They want to know more about it. I think it’s just not a lot of people know about this but everybody I talk to and tell the story to is fascinated with the dignity and the choice and the control, and dying in a way that’s very graceful.
What you hear from other people is like, “That was not my experience.” My grandma or my father, whoever died, they died very bad. It was not good for anybody. So to hear this side, it’s almost like they’re like, “Wow, I wish we could have had that. I wish we could have gone through that.” It’s interesting that when you bring it up … no one would ever bring it up, but when you talk about it, it does open up a really interesting conversation.
Dr. Bob: Well, that’s why I so appreciate you being here and being willing to have this conversation because this is the kind of thing that people, they need to be able to share these discussions. Imagine what my party conversations are like. My wife hates going to parties with me because invariably people ask what I do, and we start talking about these conversations, about situations. Then they start telling about their experiences. For me, I live and breathe it, but I recognize that not everybody has the same comfort level with it. But people are fascinated when they understand that there is another better option.
Patient Son: I’d just say that the whole thing is so sad in terms of the disease and knowing nothing about it until he was diagnosed. To see how he deteriorated physically so fast. The disease doesn’t normally have pain associated with it, but he was a different case where he had so many orthopedic issues from surgeries, he was in incredible amounts of pain. It was so sad to see that. For him to be able to make this decision and to escape that pain while being so sharp mentally and so forth. I think it was one of the best things that happened in this journey. Like my brother said, we’re so appreciative because we cared about him so much, and so many people in San Diego and the surrounding communities do. He was very well loved, and he deserved, like so many other people in this world, to go out the way that he did, on his own terms. Thank you so much. We’ll always be appreciative for that.
Dr. Bob: Alright guys. So Chris, Brian, Eric, thanks for being part of the conversation. You’re awesome. Thank you all for tuning in to this episode of Life and Death Conversation.