John T. McQueen: [0:02] Welcome to Anderson‑McQueen’s radio show Undertakings. I’m John McQueen, president and owner of Anderson‑McQueen Funeral Homes, and as always on this show, we “undertake” those subjects that you want to know about.
[0:16] Remember, if there is a specific topic that you’d like us to talk about, or if you have a question you would like
for us to ask one of our upcoming guests, please email them to email@example.com.
[0:31] We always do our best to include everyone’s request, if at all possible.
[0:36] Our topic today is exploring the right to die movement. Our special guest today is Marcia Bailey. Marcia is with
Compassion & Choices, and she is the facilitator of the Clearwater Chapter, which is a Right to Die Advocacy group.
[0:55] Miss Bailey is a retired social worker, who trained staff at a nursing home, talked to patients and their families for hospice, served on the board of Funeral Consumers Alliance, and led a group for bereaved individuals at a mental health facility.
[1:12] We want to welcome Marcia here today. We know she will help us in undertaking this worthy subject. Welcome, Marcia.
Marcia Bailey: [1:20] Thank you, John. Glad to be here.
John: [1:22] We’re glad to have you. This is a topic that every family and every individual needs to think about, and help to get that word out there so that everybody has a better understanding of what the Right to Die Movement or Advocacy is all about.
[1:42] We know you’re going to do a great job today helping us understand a little bit better about that.
Marcia: [1:47] Thanks. One of our leaders nationally says that everyone is only bad death away from being interested in our organization, because when you watch someone you love die horribly, then, you really care about this a lot.
John: [2:03] Sure. If you don’t mind, why not share with us a little bit. As I stated, you’re an advocate for Compassion & Choices. What is Compassion & Choices? What does it do?
Marcia: [2:16] Compassion & Choices wants people to plan what kind of a death they would like to have.
[2:22] In America, it seems that many, many people talk about wanting to die at home with their families, but really, what happens to them at the end of their lives is they get, I don’t want to say sucked in, but somehow, involved in procedures at the hospital. They often end up in the intensive care dying with tubes and not near their family, not in a peaceful, quiet way.
[2:46] We want people to talk about, to think about it, and to fill out paper works so that they have a better chance of having the kind of death they’d like to have.
John: [2:57] That is something that I’m sure many families…none of us like to think about death. It’s a reality, we’re all are going to face someday.
[3:09] You like to think that you’re going to get to have a little bit of a hand in maybe the way it happens. Doesn’t your group also advocate taking medicine and things to aid one in dying?
Marcia: [3:23] We like people to have the option of taking medicine, because there are a few cancers and some other illnesses for which we still don’t have adequate pain control measures. We like people to have the option of taking medicine if something is going to be really painful, or drawn out.
[3:43] Sometimes, people who are on dialysis, they just can’t go through it anymore. They’re totally worn down from the process. They can stop dialysis. They will die not really on time, but sometimes, we think that they would prefer to take a medication at the time their choice with their family around them, and be able to die peacefully that way.
[4:09] Like people say, they like to die in their sleep. This is like that. It’s like taking a strong sleep medication, and people just do die in their sleep more or less.
John: [4:20] Sure. Probably the media is best about this, but I know that some people call what you’re advocating as assisted suicide. Is that what you support, is assisted suicide?
Marcia: [4:36] We don’t think about it as suicide, because the people we’re dealing with are people who would like to live, but they can’t, because they have some bad medical condition.
[4:48] Whereas, we think of a suicide is someone who could live, but doesn’t choose to do that. We’re saying that people who would like to live, but cannot because of their medical condition, should have the option of taking a prescription to end their lives, or to hasten their death.
[5:10] Many people who get the prescription don’t ever take it. They want to just know that they won’t have to be in pain. A lot of times, when people are afraid about death, what they’re afraid of is not being dead, but the process of getting there.
[5:26] They’re afraid of the pain. They’re afraid of something horrible in there. They would like to end their lives at their time and in a peaceful way.
[5:38] Brittany Maynard, who was in the news last year, or maybe it’s the year before now, time flies, who’s 29, moved from California to Oregon, and many people heard about her, popularized the idea, or made it very known to people. The reason was that she knew that her brain cancer was going to cause her to have many seizures and very, very painful headaches.
[6:07] She did a number of different videos. In one of them, she thought she was going to postpone the day when she had said that she was going to die. That morning, she had one of her very bad seizures. Then, she realized that she needed to do this while she was competent to make that decision. She chose to take the medication then.
John: [6:31] It sounds to me like maybe in many ways that it might be more of a control issue. What I mean by that is that those who are in favor of this, and they’re near the end of their life, and as you said, although they want to live, they know they’re not going to be able to.
[6:57] It’s really having that control over their life of knowing that instead of, “Hey, I’m out of control. I don’t know when my death is going to occur, how painful it’s going to be, how parallel it might be, I want to be able to have that control of knowing that if it’s getting to that point that I have this as an option, whether or not I’ll never use it.”
[7:16] As you said, many may get the drug, but they may not ever take the drug. Is that right?
Marcia: [7:21] There’s another part of the control. That’s a good point, because when I first heard about people saying what they wanted, why they wanted to be involved in this group, one of the people, a man, said that he had set aside some scholarships for people to help them get their education. He didn’t want all of his resources used up with medical treatment at the end of his life.
[7:44] That’s another part of it. People don’t want to see what they have left to donate, or give to a good cause, or continue their legacy as they saw signs for it. They want that to go to that cause, to go to that good thing that’s going to help them continue their legacy, instead of getting frittered away on medical procedures that may not extend their life very well at all.
[8:12] Sometimes, you hear that somebody went through a procedure that only extends their life a week or two, or a month. It’s like all that pain, all that money for that didn’t change much.
John: [8:27] Is Compassion & Choices entirely focused on the medication at end of life?
Marcia: [8:33] No. There’s been a real big movement in the organization to try to stop unwanted medical treatment at the end of life.
[8:42] They find that so many people are disenchanted about the idea that they go to a hospital, and then, there’s one procedure after another procedure after another procedure, and their life just keeps getting strung along.
[8:58] Sometimes, that’s very painful for them. The family wants to save this person that they care about. They don’t realize sometimes that they’re putting them through a lot of pain.
[9:09] Getting stuck with needles, getting anesthetized, coming out of it, having physical therapy, all those things involve a lot of pain and struggle, and sometimes, energy that you may not have at the end of your life.
John: [9:25] I read an article recently that was talking about the fact that unfortunately, many times, we, the survivor, have a harder time talking about the impending death than the person that is dying.
[9:41] Many times, the person that is dying knows their dying. They need to talk about the death whereas it helps them better than avoid it and talking about the, “When things get better, I’ll get out of here,” things like that.
[10:00] I’m sure also from the medical world, there’s that whole issue of malpractice and liability. I’m sure somewhere along the legal ways, some of those procedures that you talk about have been mandated that they want to make sure they cover all their bases to protect themselves down the road.
[10:24] Sometimes, it probably doesn’t take the patient’s needs in to become a primary forefront of the conversation, and could make it more difficult.
Marcia: [10:36] That’s true. I also think sometimes it’s a matter of the doctor is either interested in what this procedure could do in terms of, “That’s how we learned about something that might help people in the future.”
[10:49] Many doctors give themselves a really guilt trip when somebody dies. I don’t know how we could put on them the fact that they were going to stop death.
[10:59] Because clearly, they’re not going to do that, eventually, anyway. They might prolong it for someone, especially someone younger, but eventually, death is going to happen. Then, the thing that you would hope is that they would be really involved in trying to keep the person comfortable as they go through that process of dying.
John: [11:19] Sure. I think for doctors, too, having known several of them, personally, is that their whole goal is to make you better, or to save your life.
Marcia: [11:31] Right.
John: [11:32] It’s like when they can’t do that, they feel they’ve failed in some way, shape, or form. It’s probably tough for them, too. In all fairness to doctors, it’s probably tough for them at times.
Marcia: [11:43] I think the other part that’s tough for them, I think, is the family saying, “Oh, can’t you do something?”
John: [11:50] Sure.
Marcia: [11:50] “Can’t you keep…” “Can’t you help my mother? Can’t you save her? Can’t you extend her life?” They’d like to be able to say yes, but they can’t always.
[12:02] Again, it’s like you said, the person, themselves, may know that they’re dying, and be somewhat, at least, accepting of that, or recognizing it, whereas, the family may still be reluctant. The doctor is caught in this, between the family who wants to keep the person alive, and the patient who needs to just let go.
John: [12:26] Do you have some suggestions or advice on how people can protect themselves from these extensive medical procedures?
[12:36] Again, as you mentioned, the doctors want to help their patients, and help their patients’ families. Are there some advice you could give on, maybe, how they could prevent that?
Marcia: [12:47] I think there’s a few things. One is if you fill out paperwork. If you think about what you want, and then, you make it clear to your family that you either don’t want to go through this, or if you do, if you’re willing to go through it, then that’s fine.
[13:04] One of the most amusing stories I heard, or read about, was the man who said to his daughter, “If at the end of this I could have chocolate ice cream and watch football, then, I’m willing to go through a lot.”
[13:18] I find that amusing. I think most people want more than that. Like, I want to be able to feed myself. I want to be able to know my family and friends, and talk with them.
[13:29] But for this guy, that’s what he wanted, and so, he was satisfied with going through all the pain, or whatever. At the end, supposedly, he was able to eat chocolate ice cream and watch football.
John: [laughs] [13:41]
Marcia: [13:42] That’s one thing. His daughter knew what he expected or wanted, and so, she was able to help him get that.
[13:50] Another thing, I think, is to try to learn how to talk to your doctor. That’s one of the things that I’ve been trying to educate people about. Atul Gawande, who is a surgeon in Boston, he’s quite renowned, and he’s written the book called, “Being Mortal,” talks about how he learned to talk to patients.
[14:09] What he said was that, first of all, you have to know how much of the diagnosis do you want to know. Some people don’t want to know all of it. They want the doctor to take charge. The kind of patriarchal thing that doctors used to do. The doctor will tell you what you need to do, and you just go along with it.
[14:32] Other people, nowadays especially, they want to know the details. Many of them are going to look up on the Internet what this disease is, what you should do, and things like that.
[14:41] Myself, for example, I would say to my doctor, I want to know my diagnosis. Even if I weren’t going to look it up online, I want to know what it is, and I want to know what the reality is. I want the truth about that as much as somebody can tell you the truth.
[14:57] Then Gawande says, then, you say back to the doctor what you understood the diagnosis to be, to be sure that you got it, and say, “Is that right?” Then, you find that out. Then, you tell the doctor what is important to you. That’s where the chocolate ice cream and football comes in.
[15:15] For many people, they want to tell them some other things. Then, you try to see if the doctor can do what you want. Sometimes they can. Sometimes they can’t.
[15:27] There are things, like people might have a wedding, or a particular birthday, or something that they want to live for. Maybe the doctor can help you live that long in a functional way so that you can go there. Then, you know that after that, maybe your situation will change. That’s the kind of stuff that you want to know.
[15:47] You want to know are you going to be in pain. Should you expect that you’re going to be in pain? Those kinds of things. Then, in terms of doctors, now, we’re faced with the fact that maybe you talk to your own doctor about what you want. This year, you can do that and Medicare will reimburse the doctor for that, and so, you can go in and talk to them.
[16:13] I called my own doctor, because I wasn’t sure if you had to do anything special. In her office, you don’t have to do anything special. You just make the appointment and say this is what you want to do. She’ll talk to you about it, and she has some paperwork to indicate what you want, that you would then sign.
[16:32] You might go to the hospital and you won’t see your doctor, because many doctors now are not going to the hospital. They’re separating their practice so that people don’t have to wait. That used to be a big concern, I guess, waiting, or getting postponed while they had some emergency at the hospital.
[16:51] Now, we have hospitalists. That person may be a doctor you’ve never seen before unless you’re going in and out of the hospital a lot. Now, you’re with the hospitalist, and you need to do this same thing over again, you need to talk to them about what is it that you want, and what’s important to you, and can they help you achieve that.
[17:14] If you’re pretty sick, that might be hard to do. In that case, it’s really nice if you have someone who can go with you, who can help you understand, can help interpret for you to the doctor what it is that you want, so you want to be clear about that.
[17:31] Another thing that came up with one of our speakers at our meeting was that you can ask for an ethics consult if you’re unhappy with what the doctor’s doing, but you should also have somebody that you know call your doctor, and tell them that you were admitted to the hospital.
[17:51] Because hospitalists are supposed to do that, but we all know things get really busy, people are overworked, trying to crowd a lot of stuff in. If they’re really pushed, they might not call your doctor. If they call your doctor, then, your doctor could help explain to them what it is that’s important to you.
John: [18:10] That’s great advice. Let’s say, though, I’m not a patient yet, or I’m not at a point where I’m sick, and needing to go into the hospital, or things. Are there things that I can do, myself? You hear a lot about advance directives, and things like that.
Marcia: [18:29] Yes, that is a really particularly good thing to do, to pick somebody who can make decisions for you, if you’re not able to. To fill out the paperwork that says, “Do you want to be put on a breathing machine, a respirator?”
[18:43] Or, “Do you not want to not be put on that? Do you want a feeding tube or don’t you want a feeding tube? Do you want to be resuscitated or don’t you want that?”
[18:55] Those are things that are helpful to fill out. In our meetings, we talk with people about what’s the problem like. What if somebody in their family doesn’t agree with their decision? That’s why your paperwork is particularly important.
[19:10] Because if you fill it out ‑‑ some recent hospital workers have told us that they can get an emergency hearing with a judge, and sometimes, the judge will rule in favor of the patient so that the patient’s wishes will get recognized, now. Many people have stories about people who filled out the paperwork and then it got ignored.
[19:33] Apparently, there’s been some increased awareness of that. Now, hospitals have set ups with judges, that they can get a judge to give an order that the patient’s wishes will be followed.
John: [19:50] That’s great. You have extensive experience here, in this area. I’m sure you probably talk with a lot of doctors and things. What do doctors think about this whole process, I guess?
Marcia: [20:05] Actually, I haven’t talked to a lot of doctors. I think, probably, that varies. There’s still doctors who are from the old school, and they want to do what they want to do, but I think many of the younger doctors realize that this isn’t good for patients, and also, it probably takes a lot of the strain off them.
[20:25] My own doctor doesn’t seem to have any resistance at all to the idea of talking about what I want and doing what I would want. I think young doctors, maybe, are more aware of the fact that this takes some of the pressure off of them, that it makes it easier not to have to play God.
[20:46] I was a social worker in child welfare, and had to play God, sometimes. It’s a horrible place to be, I would think doctors would be somewhat relieved about that.
John: [20:56] Sure. I know I would hate to have to be in that position, myself. You have to try and decide, “Will this person live or not?”
Marcia: [21:08] Right.
John: [21:10] I’m sure this probably never comes up, and I say that tongue‑in‑cheek, of course, because we see this quite a bit, even just in our funeral home and funeral business, sometimes. What do you do if families don’t agree, [laughs] or there’s something in your wishes that maybe your family doesn’t agree with?
[21:27] Do you have any helpful advice, maybe, for, let’s say, “I want this. I have my desires about what I want for my end of life, and my kids don’t agree with me.” How can I best approach that, or handle that, maybe?
Marcia: [21:43] That is a really tough one. I’m glad that my children seem to be willing to go along with what I think I want.
[21:50] I think there are a couple things. Because there are many things in our lives that we don’t agree with with our children. They don’t agree with what we’re doing. We don’t agree with what they’re doing, but we still honor each other as respecting them, and saying that they have the right to make their decision, we have the right that they respect us the same.
[22:08] The other thing is I think you can bring up with your children the fact that this is a way that you would appreciate if they would show their love for you. Like, “I know this isn’t what you want, or you think that you don’t agree with what I want, but I would like you to show that you love me by doing what I want. Because in this situation, this is really important to me.”
[22:33] Then, you have to hope for the best. If you can’t resolve it that way, then I think one of the best things to do is to fill out paperwork, that makes sure that someone else is designated by you to make the decision, and maybe even indicate that your children’s decision is to be over‑ridden by the judge, or whoever is supposed to make that.
John: [22:58] Sure. Relating it back to the funeral business, as an example, I always tell mothers and fathers when they’re pre‑planning for their funeral, and they say, “I want to go home and talk with my kids about it.” I say, “Hey, I totally understand. I would encourage you to talk with your kids.”
[23:19] Having that sort of talk of a lifetime is an important thing to do, but don’t be surprised if your kids tell you, “Mom, don’t worry about that. I’ll take care of it.”
[23:28] [laughs] It’s really not that they really want to take care of it. From what I’ve found over the years, it’s really they don’t want to think about mom or dad dying, regardless of their age, they’re wanting to try to push that subject off.
[23:42] You need to really dig a little deeper and say, “This is something that’s important to me, and I really want to be able to talk with you about it, you know how I feel, to then get the children to listen, and get beyond that initial reaction of ‘Don’t worry about it. I’ll take care of everything.”
Marcia: [24:01] I think that’s a really good point. I think the other thing is that if you talk about it, you might help your children work through some of their feelings about it, or some of their concern about it.
[24:12] Because what we find is that people who worked in hospice, for example, as volunteers, or something, they become much more comfortable about the idea of someone dying. Because what happens in our culture is we don’t see people dying, very much…
John: [24:26] Right.
Marcia: [24:27] …we’re afraid of it just because it’s an unknown. I was a hospice worker, and we’ve had a number of speakers at our meetings who were hospice workers, and we have people who volunteered.
[24:40] They say that after you get exposed to it, to death more ‑‑ I think I’ve also read about undertakers having that experience ‑‑ you stop being so afraid of it, and you realize it’s a process.
[24:53] Some people handle it well. Sometimes, it doesn’t get handled very well. There are things that get taken out of your hands, and it’s the way it is. But what you would really like is for this person to be comfortable to die without a lot of pain, to have worked out some of the issues with their family members so that there isn’t a lot of guilt left, or a lot of anger, or hurt.
[25:21] I know people say it’s important to say, “I’m sorry and that I love you.” You would like to hear that, probably from your family if you were dying. It just makes everybody feel more comfortable and at peace with it.
[25:35] Because sometimes, even long after death, people are still struggling about issues that they had with their parent or the person who died. It doesn’t just end because the person died. Those feelings are still there.
[25:52] If you talk about it with your children, you might help resolve some of that, and also, you might get them to feel more comfortable about even what you want, or at least, think about it. I think the conversation’s really important to have.
John: [26:09] I think it’s one of life’s most important conversations…
Marcia: [26:12] I do, too.
John: [26:13] …that’s oftentimes overlooked.
[26:17] Shifting away from family for just a minute, we talked a little bit about your doctor. It’s great, your doctor is one who is willing and open to discussing it, honoring your wishes, and knowing what you want to do. What happens if your doctor doesn’t agree with those decisions? Do you have any advice there for people on what they should do?
Marcia: [26:35] I think that’s a really hard one, because basically, what I have to tell people is you maybe need to look for another doctor. That isn’t easy either, because there are so many things about doctors that determine whether or not you like them, or you feel comfortable with them.
[26:49] Sometimes, I think that people come to what’s called a “Mexican standoff,” and that the doctor says, no, they won’t help them, but they won’t interfere, either. Especially, if they went to a hospital, or if they can work out that they could get into hospice, or die at home, maybe their doctors wouldn’t have to agree with them all the way.
[27:11] That’s when I think you have to feel out, and say, “Well, how much do I want to fight this, or how big of an obstruction is my doctor likely to be?”
[27:23] For example, if you’re talking with a hospitalist, maybe your doctor won’t even be involved, it’s hard to know. It’s not an easy thing, but basically, I have to tell people that maybe they have to look for another doctor.
John: [27:36] Sure. To really help out our listeners, and especially those, here, in Florida. An important question to ask is, “Does Florida law allow you to use medication to aid in dying?”
Marcia: [27:51] No. Not right now, it doesn’t. California, Oregon, Washington, Montana, and Vermont allow you to do that. Just this year, Canada passed a law saying that now, Canadian citizens will be allowed to use medication to aid in dying.
[28:08] This is really different than euthanasia. Euthanasia means that your doctor’s going to be involved, like giving you an injection or something. This is your doctor gives you a prescription, and then, you choose whether or not to take the medication, and so, this is aid in dying.
[28:28] We’re hoping that eventually, Florida will get to that point, but you have to work carefully, because there are people who, for religious reasons, don’t want to use this option, because they think that God should decide when you die. Certainly, they have a right to that position.
[28:46] There are also people who are disabled, who are afraid that somebody wants to get rid of them because they’re difficult, or are a strain. Those people, rightfully, are worried. It needs to be done in a thoughtful way so that people know that this is a choice that you make.
[29:06] The good thing about the law in Oregon, and in our country, and in all of those states, is that you have to have two doctors, who’s talked to you about it, who know that you’re ready die, terminally ill, soon, who know that you’re competent to make this decision, and who get some feeling by talking with you whether or not somebody’s trying to coerce you.
[29:29] Because that’s a thing that people don’t want to feel like somebody’s trying to get rid of them, so that they can get whatever they have to leave ‑‑ money, or whatever goods, property. It needs to be done very thoughtfully. But it isn’t true in Florida, yet.
[29:45] What I tell people in Florida is you can talk to our end of life consultants. You call 800‑247‑7421, and you ask to speak to one of the counselors, and then, they call you back. Then, they can tell you what your options are in Florida.
[30:03] One of the options is you can stop eating and drinking. People get really frantic about this, like, “I’m going to starve to death. It’s going to be really painful.” We’re not talking about starving to death. We’re talking about dying from dehydration. If you’ve ever been dehydrated, the first thing that you want to do, for the most part, is go to sleep. It makes you very tired.
[30:31] The chances are that it’s going to happen faster and with much less pain. Many people have had colonoscopies. They know what it’s like to go without food for a day. The first day, you have to take something like popsicles, or something, bouillons, that sort of fills up your stomach and stops the hunger pangs. Then after that, it isn’t such a big deal.
[30:57] Now, we have sprays that you can put in your mouth or gels, to relieve the sense of thirst. That’s one of the ways that you can choose to do…
[31:08] I prefer that to people taking the idea of they’re going to shoot themselves, or jump off a bridge, or hang themselves. Those are horrible ways for family members to find you. They cause a lot of trauma, and they’re kind of do‑it‑yourself methods that don’t always work.
[31:26] Then, one of my earliest cases in social work was a girl who had shot herself, but didn’t kill herself, and turned herself into a paraplegic. Now, she had more problems than before.
[31:39] That’s another reason why we advocate the law. Because there are older people who say, “I have a terminal illness. I don’t want to face this pain,” and they try to kill themselves in ways that backfire, or are very, very messy for whoever has to clean it up, and find them.
John: [31:59] Sure. In many ways, dying can be difficult on everyone, but those more traumatic ways can definitely be even more difficult on those that are left behind.
Marcia: [32:13] Yes, especially if they find them, and they have to be exposed to whatever they saw. They’ll often never forget that.
John: [32:22] Marcia, it’s been great having you with us. A question I have for you is, if people are interested in learning more about Compassion & Choices, or interested in working with your group to facilitate this change, who should they contact? Is that you or someone else in the group? Where can you direct them to?
Marcia: [32:42] We have a website, compassionandchoices.org/florida. That tells you how to get in contact with me. There’s my email.
[33:01] Also, it gives you information about what’s going on in Florida. If people farther away are listening, it tells you about other groups in Florida. We’re starting to talk about ourselves as action teams now, because we are trying to get action in Florida.
[33:17] Our group meets in Clearwater at the Home of the Unitarian Universalists, which used to be called a church. They’re trying to be really careful that this is not a religious thing. That’s at 2470 Nursery Road. We meet the first Thursday of the month from 1:30 to 3:30. People could just come to that. They could contact the church, or they could contact our website, contact me.
John: [33:47] Great. I’ve attended your meeting. You were kind enough to have me there as a speaker one day. I am always seeing to have a great turnout at your event and a lot of people that are definitely interested in learning more and trying to help move the movement forward.
[34:08] Again, Marcia, we appreciate you being with us today. I want to thank you for listening to Anderson‑McQueen’s radio show, “Undertakings.” Never miss an episode by subscribing to Undertakings at the iTunes Store. It’s easy and it’s free.
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[35:01] I’m John McQueen with Anderson‑McQueen Funeral Homes. I thank you for listening to Undertakings.