About

Dr. Bob's patient, Bill Andrews had ALS and was terminally ill. Before Bill decided to exercise his right to die in California, he agreed to do this interview to help others understand the importance of the law and his decision.     Transcript Dr. Bob:  Hi everybody. I'm here today on the phone with a gentleman who I'm really interested in having everybody hear from and meet. It's kind of a unique opportunity on all counts to hear from a gentleman who has lived life very fully, really did a lot of things that many people only dream about doing in his life and before he was able to really see that life through, was afflicted by a disease that has no cure and is universally debilitating and in many cases fatal. He's become a patient and a friend and I've had an opportunity to really be amazed by his story and by his outlook and approach, both himself and his family. We only have a brief opportunity to hear from and learn from Bill because, well, you'll find out why in just a bit. I'd love to introduce William Bill Andrews. Bill, say hello to our listeners. Bill Andrews: Hello listeners. Dr. Bob: Thanks. Bill Andrews: This is Bill Andrews reporting in. Dr. Bob: Thank you, Bill. Thank you so much for being here. Bill, who's with you? You have a couple of your sons with you as well. Can we introduce them? Bill Andrews: Yes. I'm with my oldest son, Brian, and my youngest son, Chris. Dr. Bob: All right, and thank you guys for Bill Andrews: They can say hello, I guess. Brian: Hello. Dr. Bob: All righty. Sounds good. As I mentioned, Bill is a 73-year-old gentleman with ALS. Bill, how long have you had ALS? Bill Andrews: I'm going to say probably about—I'm going to guess about two years. Dr. Bob: Okay. Bill Andrews: I was diagnosed about what, a year and a half ago, Brian? Brian: One year ago. Bill Andrews: One year ago. Then it was very obvious that there was something seriously wrong. The precursor to this is I had broken my back. I used to motocross and do a lot of surfing and stuff and I had many, many ... I brought injuries into the ALS experience. Broken back. Oh, just all kinds of stuff, so when I finally couldn't deal with the kind of the day-to-day life of my current injuries and stuff, that's when I really got [inaudible 00:02:51 ALS because I couldn't stand up. I could barely walk. I was still trying to surf, like an idiot, but it became very difficult. Just a year and a half ago I was in Peru surfing. Dr. Bob: Wow, but you knew something was going on? You had already Bill Andrews: I knew something was going on. Dr. Bob: Okay. Bill Andrews: I knew something serious was going on. Dr. Bob: Then a year ago it was officially diagnosed and then what’s Bill Andrews: Correct. Dr. Bob: What are things like today? Bill Andrews: Horrible. I'm in bed. I get fed. I wear diapers. I'm kind of confined to my bed. We have a Hurley lift, I'm going to guess that thing is called. Dr. Bob: A Hoyer lift. Bill Andrews: Hoyer lift, and I just get into that and I have an electric wheelchair. Last weekend I was able to get out and see my kids play some sports and stuff, but that's about it. This is where I live now. At Silvergate, room 1-1-3 in my hospital bed. Dr. Bob: Wow, and a year and a half ago you were surfing in Peru? Bill Andrews: When was it? Brian: Yeah. It was a year and a half ago. Yeah. Yeah. Bill was surfing in Peru. Bill Andrews: But I knew there was something wrong, you know? I was struggling. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: Really mightily. Dr. Bob: Yeah. As far as you are aware, and you've been dealing with this and obviously researching being treated. You've been in the system. Bill Andrews: Correct. Dr. Bob: Everybody, the best that medical care has to offer has been offered to you, I'm assuming. Bill Andrews: Correct. Dr. Bob: Here you are in this situation. What is your understanding of what will happen if things just are allowed to go on as they would normally? Bill Andrews: Well, as I understand it, I will not be able to swallow my food chew my food, swallow my food. Nor be able to breathe on my own, as I understand it. Dr. Bob: Right. Which is correct. I mean, the timeframe for those things is unclear. Bill Andrews: Right. Dr. Bob: Have the doctors given you any estimates? Bill Andrews: No. That's a moving target. No, they haven't. No. Uh-uh (negative). Dr. Bob: Okay, but that's inevitable for every person who has amyotrophic lateral sclerosis. Bill Andrews: I haven't heard of anything yet. I tell people, you know, I'd guess ... Because I have some friends that say, “Well, look, Bill, a cure may be right around the corner. You know, just stay in bed and they'll invent a cure and you're going to be fine." Well, that ain't going to happen. In my lifetime anyway. I don't want to go out with the tube in me and all that stuff. I feel at least now I'm reasonably good mentally and this is kind of where  I'm at a good point right now. Spiritually, emotionally, physically. Dr. Bob: Great. Bill Andrews: That's where I am. Dr. Bob: That's where you are. Bill Andrews: Yep. Dr. Bob: What's your game plan? You want to talk about the strategy and what's been happening? Bill Andrews: Well, my game plan is—well, for the last couple of weeks I've been trying to wrap up a lot of little-unfinished tasks and chores that I wanted to complete, little projects, but I think they're doing just fine. I think my family ... I guess the big thing for me is that my family, that we're all on the same page. That to me was crucial. That we all understood what I was doing and why I was doing it and that this was all my choice. Looking at what the options are and for me, an option is not being confined to my bed the rest of my life and being kept alive. I don't want to be a Stephen Hawking, and another thing that I wanted to really pass on to my kids is that I'm not fighting the battle, I'm just kind of lying here. I'm getting taken care of. This ain't a bad ... You know, if you like getting taken care of, this ain't bad. I get my diapers changed, get fed, get dessert. People run errands for me, but the warriors are like my kids and the caregivers and the doctors like you are. You guys are the warriors. I'm just a ... You know, you're the warriors and right now I'm just kind of a settler. I just got to lie here but you guys are out there doing the battle. Dr. Bob: What an incredibly refreshing perspective to have. You know? You're not feeling like a victim like so many people justifiably do. You know, you're seeing it from so many different angles, not just your own. Not only through your own eyes, which is remarkable, I think. Bill Andrews: Oh, thank you. Well, yeah. About 30-something years ago I was diagnosed with a real, pretty bad case of malignant melanoma and I was only given a few months to live at that time. That was about 30-something years ago. My kids were there when I was diagnosed and everything, so I've already fought that battle. I had the tumor taken out of my arm. Had my lymph nodes excised. I fought that battle because I could see there's was a way to win that one, so there I kind of feel like I was a warrior, but here, ah, you guys are. Dr. Bob: Mm-hmm (affirmative). That battle, the melanoma battle, I've seen how that turns out in most cases, which is not the way it turned out for you. It was, at least back then - Bill Andrews: No, I was bad with the - Dr. Bob: You were well aware of that. I know. Bill Andrews: I was very, very lucky. Yeah, I was very lucky. In fact, kind of going a little off track, at the time I had it they were experimenting with BCG injections. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: Up at UCLA. They were going to inject BCG in the initial site of the tumor for melanoma. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: I sent my path report up to them and they rejected me because the path report looked so bad, that I probably was going to die. They didn't want that on the report. Dr. Bob: Wow. Bill Andrews: I kind of fought that one out anyway. Dr. Bob: Yeah. Bill Andrews: Flipped a little bit. Dr. Bob: You faced your mortality, right? You had no choice but to face your mortality at that point. Bill Andrews: Correct. Dr. Bob: You were what? Bill Andrews: Oh, there is no choice. Dr. Bob: Yeah. You were in your 40's? Bill Andrews: Yeah. Absolutely. Dr. Bob: With children that were young. Right? Bill Andrews: Right. Correct. Dr. Bob: Certainly not grown adults. Bill Andrews: They were there in the doctor's office with me, yeah. Dr. Bob: Yeah. Bill Andrews: Right. Dr. Bob: I think you were sort of alluding to this and assuming that, maybe assuming that some of the people out there who are listening know what we're talking about.  But I don't think we actually discussed what the option is that you are taking to handle things the way that you feel best. Can you share a bit, share that? Bill Andrews: Sure. I, you know, kind of put a box on the board. I'll kind of equate this back to my melanoma. With the melanoma, I was given ... The doctors said, "Well, you kind of have three choices. 1: You do nothing because it appears to be fairly advanced melanoma and just see what happens. 2: You look for some miracle cure somewhere. Go to Haiti or somewhere and find a miracle cure. Or 3: Let conventional medicine dig in, and I took the third choice and I'm still here. With the ALS the choices seem to be kind of the same. I can just sit back here and wait until I can no longer breathe or eat. Or I can be kept alive by breathing tubes and feeding tubes and stuff. Or I can do with this choice that I'm making now, which is to go through the end of life in a peaceful happy way with ... I mean, I feel good about this, doctor, I really do. As long as my family's on board with me it's spectacular. I really don't think there's ... The choice for me, and this is easy, you know. This is the time and I'm not going to be kept alive. I watched a Stephen Hawking film on TV years ago and there was a lot of recrimination and stuff about, anger and stuff, by keeping him alive and I don't want that to happen with my family. Nor do I want it to cost eight trillion dollars to keep me alive. There’re  factors that went into my decision. Dr. Bob: Many factors and the decision is still being made every day. Bill Andrews: Every day. Every single day, Doctor. Dr. Bob: Yeah. Bill Andrews: Yeah. Dr. Bob: For clarification, Bill is exercising his legal right in California to go through the end of life option act. To receive Aid in Dying, which means that he's made requests of his physician, who's me in this case, to prescribe a medication that will allow him to end his life if he chooses to take it on his terms at the time and place of his choosing. A second doctor who knows him well has concurred that Bill is of sound mind and has a condition that's terminal. Bill has submitted a written request saying basically the same thing. Four days from the date of this recording, Bill's plan is to get this prescription filled and take this medication with his family around him, his loved ones, and he will peacefully, quickly, and in a very dignified way, stop breathing and die. As I said, Bill's making this choice each day because there's no requirement. He doesn't need to take the medication. He can choose at any time not to, and it's just fascinating to be having a conversation with a man who has the presence of mind, the courage, the support from his family, and knows that there's a very good chance and in his mind an absolute chance, that his life will be ending in four days. I am completely honored and awed to be able to have this really frank conversation with you about what you're thinking and feeling and I remember our last conversation you just kind of blew me away when you told me that you're excited. This whole thing is in some way exciting to you. Are you still feeling that way? Bill Andrews: Oh, absolutely. No, this is a ... No. We're, you know we're ... You, I mean… It's great talking. Let me just kind of preface. You have this really kind way of speaking that most of my other doctors haven't had quite the effect on me that you have. Yeah, I'm enjoying this. I've kind of been a pioneer in a lot of things and this is just ... I'm really enjoying this and let me tell you, Doctor, the thing that's the most incredible thing to me, and this is more of a, really a spiritual and emotional thing, is being able to choose when you're going to die. I've always thought if I were to die the most noble way, for me, would be to be protecting my family, my loved ones, or even a dog in the street or something. If I were going to die, would be doing, I guess maybe doing good, but you never know when it's going to hit, but with this, I get to say the goodbyes. I get to do whatever unfinished business. I get to finish any unfinished business and it's unreal, kind of. Very interesting. I think this can do a lot of good. I was telling somebody this morning that if one were suicidal, the worst way to end one's life would be by suicide by cop or something. Where you actually in one's selfishness at ending your life, you end others. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: Where I think that's horrible and I have friends who have done that, but for this, you know, I'm choosing the time. I'm choosing the place. I'm choosing the environment. I'm choosing the company and for me, this is by far, I can't think of anything better. I've almost drowned a couple of times. I've been in car accidents and all that but this is almost soothing. I hope it really works in the way that it's been intended to work and doesn't get prostituted or something in some way that it goes off track. Dr. Bob: You mean the whole idea of the ability to support people in this way with terminal illnesses and the physician aid in dying? You're worried that it could somehow get off track? Bill Andrews: I hope it doesn't is what I'm saying. Dr. Bob: Yeah. Well, there's a lot of protections in there and if I have anything to say about it, it won't. There's enough. You know? Bill Andrews: Yep. Yeah. Well, I know. That's why you know, you guys at the beginning are the ones that are going to chart the course and that's I think, really, really important. Dr. Bob: Yeah, and I think it's important for people to consider, to understand that this is so far away from suicide. When I hear the word physician-assisted suicide I understand Bill Andrews: Yeah. Dr. Bob: It irks me because I think that there's nothing remotely like the suicide that most people think about, which is to end, you know, your life because of some emotional suffering or situation that you're in. People who are using this option, like you, are dying. I mean, you would choose. I'm sure that you would give anything, anything, to be able to not be in that position. Right? In which case you would be— the furthest thing from your mind would be taking a medication and ending your life. Bill Andrews: Absolutely. That's absolutely true and I know sometimes I throw the word suicide out and that's only because maybe because it's simple to say that word but I certainly like your definition a heck of a lot better than mine. Dr. Bob: I guess I took that opportunity just to insert my bias on that. Bill Andrews: Well, I agree. I think you're absolutely not. Dr. Bob: This is your experience and you can think about it or talk about it Bill Andrews: Right. Dr. Bob: Any way you want. Bill Andrews: Yeah. Dr. Bob: Bill, I have the advantage of having a little bit more knowledge of your background and who you are and I think this whole conversation becomes more poignant when people have a sense of what you've done. Could you share a little bit about your background? Bill Andrews: Oh boy. How much time do we have? Dr. Bob: Let's do the Reader's Digest version. Bill Andrews: Well, we'll do a real quick one, yeah. My grandfather's a general in the army. The Air Force. My father was in the military. I was born in Chicago. We moved to California in the '50s and eventually, my family ended up in La Jolla. I grew up right across the street surfing and enjoying the ocean at La Jolla Shores. Graduated from La Jolla High School. Got a scholarship to the University of New Mexico as the United States was preparing for Vietnam. I didn't do real well with that experience with the military side of my education. Anyway, I kind of did an odd thing. I just worked. I have a very broad, broad work history. Not very deep. I know a little bit about a lot of stuff. I've done engineering. I've done clothing manufacturing. I've made garments overseas. I did some advertising programs for Pepsi-Cola. I was on the cover of Surfer magazine if that makes any big deal. I used to motocross motorcycles. I used to race motorcycles. An avid sportsman, fishing. Loved education so this is why this program that you're doing is so fascinating to me. I'm absolutely enjoying every second of watching this go through the process. Raised three beautiful children. Actually, their mother did a much better job at raising them than I did. I just love learning about this and I am so thankful that we've progressed to a state where we can talk about these things. Dr. Bob: Yeah. Bill Andrews: You know, maybe my kids have a one- sentence thing they can say. Not something too bad. Dr. Bob: I would love to get a little bit of the insight from them if they're willing. No pressure though. Brian: Hello, this is Brian and just—my dad's always been a real go-getter in life and wants us to be the very best we can be and always wanting us to be improving and really to be exceptional. Of course, it's been very difficult to watch him go from a very active person and suffering through the loss of being able to use his body. Back on that comment about the suicide, I'm finding a lot of comfort from knowing that you know the cause of death is ALS and that we're able to make this choice. The aid in dying is just fabulous for us that this was passed in California and we're getting the help to do this and your guidance. It's either, you know, going to be that path or watching him really suffer and go through a long and much more difficult process, having a result in a very short time from now that we get to avoid with this. Dr. Bob: Yeah. Brian: Feeling very fortunate and very proud of my dad and very thankful we have this choice. Dr. Bob: Wonderful and I have to tell you, you know, that giving him the gift of supporting him is incredibly powerful. I've had the opportunity to be with many of the family members. The children, the spouses, parents of people who have done the end- of- life option and they are all so at peace knowing that they gave that gift and it didn't always start out— they didn't start out feeling supportive or comfortable with it by any stretch of the imagination but having come through that together, recognizing how desperately important it is to the person who's dying to have that support and to have people with them at the time, you get to go on the rest of your life knowing that you gave that ultimate and last gift. Brian: Yeah. Yeah. Dr. Bob: Good for you and thank you. This might be helpful for people. When your dad first—and Chris, if you want to chime in too—When your dad first approached this with you, what was your initial reaction? Do you remember? Brian: Well we actually brought this forward ourselves in working with him. We were looking at researching ALS and talking about what we wanted to do in the time ahead from diagnosis and we decided we were going to really come together as a family and we took a great trip together, a road trip, and we spent a lot of time together and had a lot of great conversations. Dad's friends from surfing—he's got hundreds of friends— threw him an amazing party. It was a celebration of life while he was here and that's the way Dad wanted to do that versus waiting until he was gone and having a big service and paddle out after he was gone, so that was an amazing day. We had a band, amazing food. It was a beautiful day at the beach. Dr. Bob: Wow. Brian: His friends made this happen down in La Jolla. We've really just taken this time to come closer together and have these great experiences. We were thinking about how this was all going to come to an end and we were going to ALS meetings and just really learning about it and part of that was just researching. I remember reading about it online and then we talked about it as a family and then, you know, it kind of went from there. Dr. Bob: Okay. Brian: Yeah, just exploring the options. We all have felt really good about it from day one. Dr. Bob: Great, so it kind of happened organically and a lot of times it's the individual who finds out about it or comes to that kind of decision, sometimes having been thinking about it for quite a while and it does take some finesse sometimes and time to get families onboard, so I'm glad that you didn't have to go through that. You were able to just, from day one, be united and working together, which is great. Bill Andrews: Yeah, I think in general we were 90 to 95% onboard in total from day one. My decision was I did not want to be kept alive and if it came down to not eating, not drinking or whatever, that was my chosen course. I wasn't going to put my family—I didn't want to put my family through a whole bunch of torture but a torture for me would be breathing help and eating help. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: And selfishly watching my bank account go from a very small amount to negative numbers. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: A lot's played into my decision, selfishly, on what I was going to do. Dr. Bob: I hear you. Bill Andrews: I appreciate them that they're going along with this. Dr. Bob: Yeah. Chris: This is Chris. I have one more thing to add to that. Dr. Bob: Great. Chris: I think in the beginning we were very curious about the disease and that curiosity led us to read a lot and also like Brian said, they started going to meetings. I was living in New York and I was pretty far away, so for me, it was more of like an academic research. Like what can I read and what can I understand more of? Once you start to dive into that space and you get like ... If you don't have a disease you need proximity to it to understand it and once you do, it sort of is like "this is awful" and you want to do everything you can to help. I think that for other families that might be going through this, I imagine there's a lot of avoidance of kind of really want to think about the end or "I don't really want to know too much about it”.  But for us I think having, throwing ourselves into it, it gave us a lot more strength, I guess, to just keep moving through this process with him. Dr. Bob: Mm-hmm (affirmative). Chris: Because we know what's on the other side of it. We don't know how he's feeling but we're able to paint a picture of it by seeing how other people, what it's done to other people. Dr. Bob: Yeah. Now other people will be able to look and have, hopefully, hear this conversation, and the conversation can continue in various forms, but to see how powerful it can be to plan. Right? Not to avoid but to see what's coming, what are the alternatives, how do you make sure that at the end you feel like you have the control you need, that you always would want. The disease takes pretty much all control, at least physical control, away. I imagine knowing that you're going to be able to make this last decision for yourself, Bill, gives you a real sense of control back that's been missing. Bill Andrews: Oh, it absolutely does. I just want to add one more thing too. When I first was diagnosed I wanted to learn more and more about the disease. I'm reading, reading, voraciously and you know, it's all over the place of what it is, what causes it, what doesn't cause it and on and on and on.   So I kind of, I started writing originally about my experiences on my blog and then I thought, eh, if people want to learn about the disease they can go to Wikipedia or something. People had asked and they go, “Well, how are you feeling today? You're moving your toes.", or something. I go, “Well, you know, maybe you ought to learn more about the disease yourselves and then maybe you'd understand where I'm coming from a little easier." Because it's all kind of basically the same, so rather than explaining to the same people every other day how I'm feeling, just, you know, make your own calendar and chart it yourself and they can make their own timeline or something. Dr. Bob: Mm-hmm (affirmative). Mm-hmm (affirmative). Brian: Yeah, my dad's real quick as well. Dad would always say, "Hey, if this is where it would stop, I could be okay. Where I still can stand up and take a few steps with my walker or be able to feed myself and go to the bathroom. Yeah, okay, I'm okay." Then every day we'd get progressively worse and you hit a new level and it'd be like "Wow, I didn't think I'd keep going with this but now that I'm here I could keep going a little more.", and it was just like, and I'm going where is the line? You know? Where is the final level where it's not going to be okay anymore and then it becomes a— there is a point where ... Because as Chris said, "Dad, we're researching." In the end Dad, he was consistent from day one. "I will not be in a feeding tube. I will not be in on a respirator. I don't want to be kept alive. If I have to be fully cared for and bedridden, that's not the quality of life I want to have and that's when I'm ready to go." So always trying to think about, well, at some point we're going to hit a point where you can't move your arms at all. Today he can't move his legs and he doesn't have the strength to do anything with his arms other than lift something that weighs just a few ounces. Pretty soon he won't have the ability to use his arms at all and that's very close so we're trying to stay ahead. We know that there’re only a few decisions left. You know, at the very end he's going to starve to death and go through a [inaudible 00:33:26. A difficult process or take this option, so it's been just always trying to stay ahead, but as the years evolved, choices and the days and the weeks and the equipment we need and choices to make has been—it's all in Dad's own journey. Dr. Bob: Mm-hmm (affirmative). Brian: But here we are and now we're all feeling really good about this choice. You know, given where we are. Dr. Bob: Yeah. Thank you. That was really awesome to hear and it's Dad's journey but you're a team and the obvious connection and bond that you guys share in his knowing that this isn’t—it's not going to tear you apart, it's not going to destroy you. That you are so together on it and seeing this is the compassionate option. I mean that's going to allow him to slip away so peacefully with that feeling of I don't know, completion or this ultimate sense of connection so that's really powerful that you've been able to create that for him together, all of you. Bill Andrews: Yeah, it's the compassion I think that is so important. You know, everybody can have sympathy or they can have empathy, but all I ask from people is you don't even have to understand it, just accept it as it is and when I tell you how it is, that's what it is. If you need any more information, go to Wikipedia. Go to WebMD or something, I don't know. That's the way I feel. Dr. Bob: All right. Hey, I have two more questions if that's okay and then I'm going to let you go. Bill Andrews: Okay. Dr. Bob: One of them is do you have any fear at this point? Is there anything about this that is causing fear or anxiety for you? Bill Andrews: Absolutely not. Not a drop of fear. Dr. Bob: Awesome. Great. Bill Andrews: No. This is like, you know— Dr. Bob: Oh, go ahead. Bill Andrews: Just a new adventure. A new adventure. Dr. Bob: Okay. That's beautiful. Bill Andrews: Anticipation, not fear. Dr. Bob: Great. I guess the last one is what would you like to share? I know it's not like you're out shouting from the mountaintops to the masses here but Bill Andrews: Right. Dr. Bob: Can you distill down your message? Bill Andrews, Big Pink. Bill Andrews: Surfing. Surfing nickname, no less. Dr. Bob: It's a surfing nickname. Bill Andrews: I guess now that I'm looking back, obviously you can't make every move the right move and just a couple of things. I think if you kind of put your life on autopilot— this may be a little weird but, kind of set a course if you can. You know, get a point A to point B and of course, then obviously by judgment is the right course. You know, a good course. Like a righteous course, and try to stay to that and every once in a while get, but because of your autopilot and that comes internally or God or your friends or whatever, kind of knocks you back into ... Excuse me. Back on course so you're not out there one month, two months, three months. You know, kind of lost out there and then you're looking at time bandits and everything. I think it's very important to make as much effective use of your time as you possibly can, and there again, you know I'm preaching to the choir and all that stuff, but I look back at my life. You know, you only have so many minutes in your life and, gosh, if you could just make 60% of those minutes effective and doing good again, all by definition, that would be my—that's my message to my kids. Kind of pick that course, stay on that course, and you'll look back and go, "Gosh, I've lived a good life and I'm proud of what I've done." Dr. Bob: That's beautiful. Thank you. That's really phenomenal. You guys, Brian, Chris, do you have anything you'd like to say about your dad or anything regarding this before we close out? Brian: Just that we love Dad very much and we're proud of him and proud to be your son, Dad. Bill Andrews: Thank you. Dr. Bob: All right, guys. Bill Andrews: Okay. Dr. Bob: Hey, thank you so much for your time and thank you so much for all you know, Bill, all you've brought to the world. I will be seeing you soon and looking forward to every moment that we have together.