On Our Own Terms: Moyers on Dying; 103; A Death of One's Own

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. . . . I'm Bill Moyers. Dying well to many of us means a measure of control over how and where we die. That basic fact has been lost in the bitter debate over the right to die. Under the media's glare, Dr. Jack Kvork in frame the debate in the most simplistic terms. Are you four or against position assist to suicide? But talk to dying people themselves and to their families and caregivers, and you learn that no one wants to die a minute too soon. How we take charge of those final days, however, depends on our personality, values and beliefs, on the stage of our illness, on whether our pain is under control, how we bear the indignities and whether the people around us understand what's happening

and know our wishes. Having choices is part of good care. It's not just a simple matter of voting death up or down. So in this third program of our series, Dr. Kvorkin is not heard from. We here instead from patients, loved ones and doctors who talk about suffering and a death of one's own. . . . . . Was this sort of your retirement paradise?

We had worked towards that and had everything in place for retirement. . Jim Whatcher is a Texan who moved to Northern Louisiana to do the work he loves, veterinarian, horse breeder and meat and poultry inspector. We had built this farm here where we also had horses and thoroughbreds and so I had two jobs. Suzy had two jobs taking care of the house and then running the farm when I was going. How are you doing, Eddie? I'm doing pretty good, Doc. What do you think about the baby? That's a big baby. Get a bone. A big baby. Okay, sweet. A bone, Mama. Come on. Was it a good life? Wonderful life. This is where Whatcher expected to die one day. He just didn't expect it to be this soon. In 1997, at the age when Jim and his wife Suzy were dreaming of retirement,

he was diagnosed with ALS, Lou Gehrig's disease. It was just like a death sentence. That's where it hit me. ALS attacks the nervous system, leading to gradual death by paralysis. The mind remains alert, even as the body shuts down. With rapidly progressive ALS, doctors said Jim would live two to five years. When we met him, he was coming up on two and a half years. When somebody dies, there's a finality to it, and you probably get angry, and then you get depressed, and then you accept it, and then you go on. With this, as each stage is hit him, it's like another death, and you die each stage. And each stage, you have to go through this being angry and depressed, and then you get on with it. And it's just an ongoing thing, and it's something we have to accept, I guess,

until however the disease takes his life. Okay. Every day, I have to do more and more for him, but he can't do it anymore. Okay, ready? It started in my legs, so it's progressed up my body, and I'm fast-losing control of my arms. It's... You have my hand up there where I can... You've started almost. It has affected my voice. It will affect my swallowing, and it appears, in my case, the breathing will go last. Now, all that I can do is operate this wheelchair. Since Jim Witcher was first diagnosed with ALS,

he has sought the latest treatments, going to specialists at Johns Hopkins University Hospital in Baltimore, and trying out experimental drugs. So he's thought this. We've thought it. I've tried everything that anybody suggested that I thought, you know, had you married. This was a man who was a collegiate wrestler. He was very athletic. I always held down two full-time jobs. We've had a bit of practice. We've had two forms. Why in the mornings it's so hard to get my muscles going? Well, they've been stuck on my lungs. I have been able to feed myself. It's not very pretty, but I'm still trying to do that, but I'm fast losing that. You lose gradual control of everything, up past your throat, breathing. Eventually, unless you take a respirator, it breathes for you.

You gradually can't breathe, of course. By that time you're swallowing, if you tried to swallow, you would inhale food or water into your windpipe because the muscles in your throat are gone. So you have to quit that. New rotten. So as it progresses, the next thing that's like to happen is you will lose your voice. I am losing my voice at this time. Back it up, so I can get my chin down. And then what happens? You lose your ability to swallow? That's probably what's going to happen next. Come on, put it just a little bit, catch fastest. All right. Can you reach it? Here, I'll pull it this way. Got it? You just have to take it day by day, every day is a new day. And before I got a bed in the morning, I'm asking the Lord for strength, physically, to be able to care for him.

Ready? For compassion that I need because I can fly off the handle pretty quick and get frustrated really easy. And this is all a new road for me to travel to. And I know I need to do something that I don't know what or how. I like how you do it. You guys just did that good strength in your neck. I don't know what we're going to do that you don't. At first, you look back maybe six months to realize, well, I could do that six months ago, now I can't. I've actually had such an opportunity to get to the age. And it's three months. Then it's a month that you can look back

and know that you've lost something. And now it's daily. When I go to the grocery store, I'm worried about, is he all right? Well, I'm gone. What if he falls out of the wheelchair? You know, he needs a urinal. What if, what if, what if? And we're out here in the country and I have nobody anywhere close that could come immediately and help him. Now, there are L.S. people that choose to go on a respirator for it to breathe with him and a stomach feeding tube when they can't swallow. Those people can live possibly ten more years with that type of help. I have chosen just not to go that route. Once I get paralyzed and can't move my limbs, and I'm not going to take a stomach feeding tube

or a respirator, then I really wish that I could probably go on and figure out how to die at that time. What are your options? Well, I'm not suicidal prone and I wanted to live as long as I could, but I would like to have it legal to have physician-assisted hastened death to where I would have either taken injection or if I could swallow it all at that time. I would just go ahead and take some kind of deal that would put me to sleep and I would like to have my family there and my friends. If you could do what's best for you, what would you do? Maybe a month ago, I could have committed suicide with some drugs or veterinarians probably. I probably have lost that ability. You don't realize how much you can lose.

You know, in a month, I probably lost that ability. Can I have some water, please? So if you could, you'd have some doctor come and quietly give you enough morphine to help you die. Once I get to that stage, that was what I wanted. Well, when do you watch stages where you say to yourself no more? When I'm totally paralyzed up to the neck, can't swallow, and you know, at that stage, what can you do? What could you do? I'm not sure what I'm going to do. What would be a good death? A painless death where you just go to sleep. And you've done that as a veterinarian

for your animals, haven't you? Many times. He made the choice that if there was any way that I guess he could have assisted suicide, that's where he would prefer to go. And he went to a lawyer and he drew up legal papers not to go on the respirator, not to go on the feeding tube. So that's out of my hands, and out of family's hands. But I could not myself give him a lethal dose of anything. The witchers have two grown children. Their son, Jay, lives nearby with his wife, Pam, and three kids. They're struggling to accept their father's desire to hasten his death. It's getting to a point where he's just going to be able

to lay in bed, and that's basically it. And you can't expect anybody in that situation to have to choose between, you know, taking a non-painful way out or having to suffer by refusing life support. You might take a fly and leave. Hey, what do you say for Oprah? That's the mind. I would want him to have another choice, but my belief system does not allow me to blame that the other choice is right. Oprah, yeah, it's Oprah. It's Oprah. In our community, it's not an issue that I think has been discussed. Position-assisted suicide. It's just not something that's considered or discussed to you. Okay, wait a minute. Let me help you down. All right. With my dad, I understand and I know what's going on, but I'm not in his shoes, so I'm not dealing with those emotions that he's having to deal with.

I'm dealing with my emotions that this is my dad. He's fixing to die. You know, I want him to be happy and satisfied with whatever he's doing. He's always talking in the community. Nobody talks about it. Say Oprah. Hi. Hi. Hi. Although Jay and his family are close by, Susie has been reluctant to ask them for help in caring for Jim. Pam, Jay's wife, teaches school. She's got a one-year-old, and a boy that's fixing to be eight years old, and a 15-year-old daughter, and that totally keeps her busy. In fact, I don't know how she handles it. And Jay, of course, we said he had the girl. Yes. Jay has two full-time jobs, and what we hate to do is take away from whatever little family time that they can manage to get together. And maybe this summer when Pam's not teaching school, there'll be a little more time available,

but right now it's just really an imposition to them. When I reach the point where I can't swallow, or even where I can't move my arms and do anything, do my computer, or anything like that, or come out and look at my horses. Give me your... What I'd really like is just figure out how to go on and get it over with. Because this is a terrible ordeal for me. It's been going on for the two and a half years. And it's an even more terrible ordeal for my family. And I just need it. I just need to go ahead and finish it. I think the first thing that runs to your mind

or all the things that you wish you could do, that you hadn't gone. Hopefully you're in a place in life where you don't have a lot of issues to resolve with people. And fortunately I wasn't in that place. I felt I was in a very good place in terms of my family. I think the hardest thing for me was to tell people that the time was short. And for them trying to deal with it, because they went into a lot of denial. And in some cases still are. That's been the hardest thing. They just can't face the world without you. Well, that'd be nice to think, but it's just seeing me die means they face their mortality too. Good morning. Good morning. Good morning. Thank you so much. You're entirely welcome. Have a nice day.

Thanks. Bye. KittyRail is 56 years old and lives alone. Until recently she worked as a purchasing agent with an alarm company. 18 months ago she had a hysterectomy to remove cancer. At first the prognosis was good. Then about nine months later, after the original hysterectomy did, I began to have back pain and sure enough, you know, I had uterine cancer, which when it spreads is, my doctor described me, said it's not a good one. It's not one that has a history of being able to be cured. And the time is not very good. It's usually very short. It could be a matter of months up to the longest heat. It was like five years, I believe. So I was hoping for the five years. And it's come much quicker than I had hoped. You're not going to have those five years? No, I'm not. In fact, I'm looking at months at this point. Kitty tried three rounds of chemotherapy to slow the cancer. The last one just two months ago.

That was when I started having a lot of discomfort. The treatments aren't working, and the cancer is spreading. Kitty's chosen to be at home with hospice care, comfort care. Hi. Hi, how are you? I'm fine. How are you doing? I'm doing good. Fritza, Kitty's hospice nurse, comes several times a week. She's especially concerned with taking care of Kitty's pain. Just so how are you really feeling? Other than just a week, I feel fine. Okay? The pain is less? Yes, it seems good today. And how about yesterday? Yesterday was not a very good day, and it really bothered me. But Kitty wants more than pain control at the end of life. Like Jim Witcher, she wants to control the time and circumstance of her dying. She can do so under Oregon's death with dignity act, which allows her physician to help her die when she's ready. As you know, Oregon has a lot that allows us to decide that we can deal with this if we want,

and that we can get medication that helps us to die. What I'm watching for is just when I just can't... It's difficult because I don't know. I don't know what the point will be when I say, it's time to do this. But I don't want to become a vegetable. I don't want to become so that I have to dislay and somebody has to come and spoon-feed me. And I don't know. You don't want to be a helpless do you? I don't want to be out of control. I think that's it. You don't want to be out of control. I've always been one who went to control over things. I went to control over my decisions to do that. And I just can't think of anything worse than being helpless and there's nothing you can do. Okay. Boy, I have a little bit today. Is it nice to be moving around? Yeah, a little bit.

Okay. It's not because you're hurting. No, no. Time for... All right. What are the considerations you're weighing for, when to choose? I don't really know. You take it a day at a time. So far I've been able to stay at home. And I'll listen to your heart. I'm getting very weak. It's even getting hard for me to get in and out of bed. When you're getting to that place, you're just starting to go, you know, uh-oh. How am I going to handle this? What am I going to do? I don't know at this point, but we'll press those decisions of what the next choice will be. Of course, there's a gamble, isn't it, that you might reach that point where you can't do what you've planned all this time. Yeah, it's happened. Yeah. And I guess you just deal with it. But I would hope that I know the point. But you clearly haven't decided to go somewhere else. You want to stay home. I would prefer that. Yeah. You'd like to die at home. Yes. I understand that.

At this moment, it's up to you. You could actually ask your doctor for the medication. Yes. And she would give it to you. Yes, I could do it tonight. Safely under the law. She's protected. Yes. You're protected. Yes. And you're just every morning when you wake up, do you wonder if this might be the day? So far not yet. Although it's starting to get to my mind more in the last week or so as I've seen my strengths go and get a harder and harder for me to manage. I know that the time is coming, but this is a good day. I'm feeling fine. I've got a good book to read. My daughter's coming over later today. You know, things are okay. I would look at this one. As her illness progressed, Kitty and her youngest daughter, Jan, began to organize the family photos, a way of passing on family history. I remember that tree.

Yeah, that's me. It's Arizona. You're three. Both Kitty's daughters support her wish to be in charge of her dying. She talked to us about, I guess, just her thoughts about it and that she was looking into it. What do you think? Well, I wasn't shocked. I think that anybody in this position would probably contemplate that. It wasn't a big surprise. Have you all been talking about the, you know, about what happens now about how you're going to manage it to do it? We're just at this point, we're pretty much taking it a day at a time and how I'm feeling and dealing with, you know, living issues here. Yeah, I don't think you have this point. We talked somewhat about care options and, you know, we get to a point where we might need to hire a nurse full time or that kind of stuff. I don't think we've talked about when you would maybe make that decision. I think she has gotten a little bit better about letting us know what we can do for her.

So, caring is just really being here for her. Yeah. When she needs you. Yeah. And I think it's important to be able to bring Isabella over here as much as possible and... Yeah. Va. That's the hardest thing, my granddaughter, and my daughters, you know, they're young and just getting on with their life and they're wonderful and I just, you know, I'm sorry, I won't be there to go through life with them. I think you should have control over your life and dying is one of those things that's a part of your life. And it's not as if you want to leave prematurely. I mean, you're trying to take every day. I'm bringing every day out. Yes. Yes, I want every day that I can get. You know, it's when you reach that point where it's no longer bearable and I don't know what that'll be.

Then I want to be able to make that decision. MUSIC Jim Witcher's body continues to wither as his physical condition deteriorates, the financial burdens mount. I guess about half of my state that I'd built up probably is gone now. We had 140 acres and we were so low for about half of it. This wheelchair probably sells for about $24,000. The van, if we bought that equipped the way it is, we'd probably be about $45,000. We had to do some remodeling on our house for me to really mentor a shower and bathe him. You're looking at another $12,000, $15,000. It's astronomical. Jim's illness would have wiped them out financially

if they didn't have good health insurance. It covers 80% of their medical bills and weekly visits by a physical therapist. But it doesn't provide for someone to do for Jim what Susie does. And nothing compensates for the emotional impact on both of them. He's had to accept so much and give up so much. He is sworn that when I have to feed him to him won't live any longer, you know? Do you get depressed? Yes, sir. I don't see how you could not. And I think that's just part of it. What do you do for it? Try not to cry when he can see me. Pray. For Susie, the sacrifices of caring for Jim on her own are many. Most of all, she misses going to church. I cried, Sunday morning, because I was looking forward to going on here. I wasn't going to be able to.

I hadn't been able to go the last Sunday and I wasn't going to get to go the next two. And I was a Sunday morning, Sunday night, Wednesday night. Did the church doors roof when I was there? Do you have help, Susie? Not this point. The more I have to do for him, of course I do the yard in the house in the farm and the shopping and it's getting to where I have less and less time during the day to do the normal, everyday things that people have to do to and the course of living. Who's taking care of the caretaker? That's something that we haven't done anyway. And we've got to make some big decisions. He's trying to get me to do things.

If I were in his shoes to have a strange person or somebody come in and help my urinal or wipe my bottom or the things that you have to do for him, you know, I don't want him to be embarrassed that way and he's sooner than he has to. The caretaker really has it. Probably tougher than I do, you know, because of the emotional thing attached to it. And then just the tremendous work, the workload that he puts on them. And you put off having people come in, I guess, longer than you should. And we've done that, and it's a mistake. Eight months ago, Jim almost died

when a blood clot reached his lungs. He agreed then to let his doctor do a surgical procedure to prevent future clots. It has prolonged his life. Hey, Jim. How are you doing this morning? But today he has come to see Dr. Pierre Blanchard with a different agenda. I need to know what my options are. I guess what I'm concerned about is when I get to where I can't basically do anything but breathe and bury his swallow and have to be just... somebody take care of everything I do. I'm concerned about where I go from there. And what you can do for me if anything. I mean, anything we can do is for comfort care and concern. I think we can do that. And I think we can talk about hospice at some point. I don't want to go to hospice.

I mean, you obviously know exactly what hospice entails. I don't know. Well, I think I do. But it's pretty good. I mean, they will keep you out of distress. They'll even send you home with a morphine drip. And, you know, if I can get to it and where I push the button enough and everybody else is out of the room, well, then, you know, so what? It makes no sense to me that you can do things like that. Get away with it. And why we don't just change them, though, and get things different. Well, I guess there's such a moral, religious issue here in the South especially about suicide, too, that that's probably impeded some of the progress in those areas. What would you do if you were in my position?

What would you want to do? Well, I want to be kept comfortable. That's for sure. I don't know if I could say what I would do. I can only tell you what I can do as your doctor, but I can't always say what I would do as a person. I guess you have to be putting that circumstance. It's not really easy to say, you know, I would do this or I would do that. I have a great deal of empathy for the things that are occurring, but that's for sure. Well, if the law were changed and lived the hour to be like the organ law, would you have any objection to that? I don't know if I could kill somebody. The only thing that I think is unfair is I'm going to have to do it before I would really rather do it. That's not fair.

I don't have to do it while I can still swallow, and while I can still hold a straw and something like that. There's no law against somebody putting something out in front of you, and then me doing it, there's nothing wrong with that, because that's me committing suicide. Yes. And it's just I would have to do it before I really want. Well, I think there are definitions of discomfort and I still think that my experience with hospice is being that we can do things for people that don't keep things moving along for a long period of time. You just have to trust me for that because I've seen it.

So the law will help me die slowly? Well, not in five seconds, but certainly not. I don't think dragging it out. Lord, I understand the position you're in. I know that I just think it stinks. Just to be real honest with you. It's just it's not a mature way to look at certain end of death, or end of life situation, such as mine. It's not a mature way to look at it. But as your physician, it would be hard for me just to absolutely take you away. And it'd be my responsibility to shelter that burden. I can assist you in making things comfortable. I can't really assist you in killing yourself.

I think we should be all right. All right. There you have any respiratory problems? Breathing problems. None that I accept the fact I can't sneeze and cough like I used to. What strikes me as a gymwinter is my age. And when I look at him, I see a reflection of myself and I ask, what would I do? Well, he asked me that too and I said, well, I don't know. You never know until you're put in that circumstance. And that's not evading the issue. It's easy to agree with somebody if you want to. But I really don't know what I would do. I like life, but I don't know if I'd like that kind of life. I don't see much for circulation, really. What could you do for Jim? I think that we can help give him support. We can help his wife by getting him help to help deal with him

as far as his activities of daily living. I think if things progress to the point that he is in any distress that we can give him medicine that will make him not be in respiratory distress. Can you squeeze a little bit there? But he then loses control over that decision, doesn't he? Yes, he does. And he seems to me to be struggling for control. He wants to control what he wants. He wants that and he wants more than that. He wants more than what we're describing. I think what you say is true. He wants not for me to control the circumstance. He wants himself to be in control and to dictate how things go. When that time arrives, is that an ethical problem for you? It is. Were you taking oath to save people not to kill them? That's very true, but I guess included in that oath too is to make sure that people have comfort and dignity in the way that their illnesses are dealt with too.

So there's a little bit of a play there between those two. If you were free to help Jim, if the law were not in your way, what would you give it? More feed? I think the most direct way is potassium chloride. It's not painful, it stops the heart, and it's quick. But the law says that would be a real no-no. That would be because I know that we give people in terminal circumstances morphine drips. And whatever they die from, we attribute it directly to their illness. But I guess the reality is that morphine probably contributes to it when you have to get to a high enough dose to suppress the breathing process. I think if I were the doctor, I could give him the medication, but I couldn't help him take it. I could do that. I could do that. You could give him the medication. I mean, I could say, this is for comfort or whatever, and he could do with it whatever he wanted to do.

Dr. Nancy Crumpacker has been a cancer physician for more than 20 years. I've seen 50 to 100 patients die a year of my own patients. So I saw quite a bit of the end stages, and watched some of those patients go through what they considered suffering, and maybe that was not what they wanted. Kitty Rail has turned to Dr. Crumpacker for help in dying. Under the Oregon law, she can assist Kitty with advice and medication. I'm getting weaker. Oregon's death with dignity law requires patients to have a six-month terminal diagnosis

before a physician can help them die. Two doctors must confirm the diagnosis. This back pain, you know, sometimes it's so bad that I really have trouble getting from... The patient must be mentally capable to make the decision. It hurts. Do you find that most of your patients are more afraid of pain than of dying itself? Yes. The conversations don't rotate around the actual death itself. But they're getting there. But the getting there is how we're going to get there. When I'm looking at myself and going, I can't do this anymore. I can't manage anymore. I can't get from one place to the other and longer. And it's coming. Kitty first met with Dr. Crumpacker several months ago. Together, they've completed all the paperwork necessary to apply for the medication that will hasten Kitty's death. It's a matter of you getting on the phone and calling me, letting me know what your thoughts are if you...

And I need to talk to my daughters and find out whether they want to be here. So I need to take those steps. I can't participate unless I feel that she has thought about this not just today, not just yesterday, but that is something she's given a lot of thought to maybe over the years. And at least since she's had the cancer diagnosis. It's difficult for me to know at this point what the actual moment is going to be. How can you predict? I guess I need to have in my mind that it's going to be a time that's available for you. Why don't you... When you've made up your mind that that's what you want to do and sort of have a time frame in mind, give me a call and we'll work it out.

And obviously if you call me and then you've got something set up and you decide that the last minute you're not going to do it, you need to understand. You are fully in control. When she chooses to enter life, if she does, how will she do it? She will take a prescription of a barbiturate and it's about two tablespoons of a bitter powder. So my job is to try to make it not so bitter. And we just mix it in water and add a bunch of sugary syrup, something to kind of hide the bitterness. And you can swallow it in less than a minute. People do that and swallow it in less than 30 seconds. And that takes effect and people go to sleep usually within about five minutes. And then they comfortable there in a coma, then they die. And the signs are that it's peaceful.

It's very peaceful. And you will write that prescription when she calls. Yes. Will you be there when she dies? You bet. You'll mix the medication for her. Is that consistent with caring for the dying when you're actually helping them to die? If that's her sense or anyone else's sense of suffering, that's what I want to do. Is really that suffering. I am hastening an inevitable death of a terminal person who's competent and adult and where again resident. Which means it's legal. And it's legal. Dr. Crumpacker was not the original cancer specialist to oversee Kitty's treatment. Dr. Kevin Olsen was. Hey, Kevin. Their colleagues in the same office. No, no, no, it's Kitty. But when Kitty looked for a physician to help her die, she didn't go to Dr. Olsen. She knew he was opposed. I don't feel like I can actively participate in an assisted suicide situation. I can't write the prescription.

I'm happy to talk to patients about what their issues are around that. But I just didn't feel like I could or should be the one that actually does this. I felt we'd understand why that's so. Well, I think it, I haven't been trained in that fashion. I don't feel like I'm competent. But I think more importantly, my own moral framework is such that I don't think that I could do it and feel good about doing it. And feel that I was actually helping the situation. I mean, it might be somewhat arbitrary on my part. But because certainly I've given extra morphine to a patient who was in pain, knowing that maybe that extra amount of morphine might be something that would hasten their death. Something visceral inside of me just tells me that this is probably not a direction I should go personally. And so I haven't. Is that a matter of religious conviction to you? Well, certainly I've spent 14 years in Catholic school, so I'm well versed in the religious issues. But I don't know that it's because a priest or somebody tells me I need to do this. It just doesn't feel right to me.

Is it your oath you took an oath to save life, not in life? I don't know. I don't know how to. The oath really isn't the issue. It's just a matter of at the end of the day when things are done and what I feel good about what I've done. And I just didn't think I could feel good about doing that myself. Dr. Olson does oversee Kiddie's hospice care, including her pain medication. One of the issues that comes up a lot when you talk about helping patients die is that patients worry that when going gets really tough. Maybe the doctors or the family members won't have enough guts to do the right thing and give them the medicine that they need. Delaud it. For fear of making things go wrong. And here we have the immatriculing. The Oregon law is controversial, but all sides agree it has led to the use of more pain medication for the dying. Oregon has the highest per capita use of morphine for pain control in the country. I always tell patients that if I'm ever going to err, I'm going to err on the side of giving you too much rather than too little. Because that fear of a painful death of being in pain and not being able to do anything about it is really an overriding issue with a lot of dying patients. Have you used any of the Delaud it since I was...

I talked to him this morning. How about yesterday, when you were having so much pain? They think that I would be able to get some of the pain to go away if I took more of certain ones of these, but they also just knock you out. You used four of them each time then? I was using three. Okay. Remember, I kind of suggested that you may take four. I want to be able to read and be aware and I don't want to sit and sleep all day long or just doze off. I don't want to knock myself out. So we're trying to find something that will give me the quality of life I want and won't just totally knock me out, but we haven't gotten there yet. Otherwise, you have that nagging, lingering feeling of pain all the time. There have been occasionally times a patient in the hospital, the nurses will say that he's clearly restless, he's delirious. We're not sure if giving him more morphine might make things worse, he might stop breathing. I've not worried about that. I've said, listen, we need to make that patient comfortable.

Sometimes the only thing keeping them going is that painful stimulus and you relieve the pain and they die shortly thereafter. But I feel in my heart that it wasn't me that took that patient's life. It was their disease process and all I did is help them be comfortable in the last moments. Is it a matter of control? You want to remain in control as a doctor. Actually, I'm happy to give the patient their own pain medicines and let them choose how to use it. But it's not so much that if my mission is to make them die, that's a little different than to make them comfortable. And that's maybe where Nancy and I differ a little bit. Nancy doesn't see a distinction between that and what about them? I don't see a distinction. I see the hastening death with a prescription by a patient at his or her home as actually a much better situation. Because then it really is hopefully all in the patient's control. In Kitty's case, I'll go out there and if we arrange the time, I'll say, Kitty, are you sure now's the time? I'm going to give her plenty of chance to doubt and to change her mind.

There's probably a dozen patients I've had conversations with who have gone through all the steps, who we've never gotten to the point of writing a prescription. They wanted to know that they could have that if the time came that they really wanted it. The last time I talked to her, she said she wasn't sure if she would follow through, but she liked the notion that she had the option if she wants. I called hospice. The key thing, I think, if patients are going to go this route is that they need to have a doctor who will take the time to really work through all the issues. And to really make sure that all the other avenues have been explored before they go into this realm and Nancy's exceptional in that regard. Thanks for coming over. It's really good to see you. Thanks the last time. I cannot imagine taking that last act in which I'm taking something that I know is going to be the last thing I do. I know. It will be hard. It will be hard.

Obviously, you put it off to, you know, I'm not sure what's going to press that button and say it's time. I can't tell you that it'll just come and we'll do it. Jim Witcher wants to control the time of his death, but can't because of the law and his family's religious beliefs. Kitty Rail has control, but doesn't know when she'll use it. More often than not, it's the doctor in loved ones who must decide for the dying. It's never easy. Some hard choices now confront Dr. Carla's Gomez at the University Hospital in Charlottesville, Virginia.

One of his patients is terminally ill and the standard amounts of medication are not easing his suffering. Are you hurting this morning? A little. Do you remember who I am? Ricky Tackett is dying of liver failure. He's only 44 years old. You know, yesterday he acted so calm and not at all what I was saying at home, but he'd come out last night. That's what I had been dealing with. Ricky's wife Rose has been caring for him at home with some help from visiting hospice nurses, but he's become too agitated for her to handle. We went back up on the delotted overnight and I went back up on it again this morning. I called Karen at 7, just back up to 34. He got real combat at just a minute ago. Ricky, can you wake up and talk to me for a second? Are you hurting in your belly right now?

Dr. Gomez is trying to determine the exact amount of pain medication to keep Ricky comfortable. Is that hurt? But he has another consideration. He's also trying to keep Ricky conscious enough to communicate with his wife. He's gotten too good doses of his delotted too. It's not working. We've got a decision to make in terms of this level of consciousness. Part of the delirium is the medicines that were giving him room free. I think when we back down, it starts to get agitated. I don't want him to have that kind of agitation. Okay, that's all right. It seems to work for a little while, so I'm just going to double the medicine right now. He got anavane just when. Just anavane. Just one milligram. Let's go ahead and give two. Okay. Ricky, I'm going to come back a little bit later on and talk with you, okay?

Sure. You said in there we have a decision to make. We'll watch the decision. The decision is there's a fine line between trying to keep him awake enough to be conversant and controlling his pain. And we're usually very good about that. He's in cephalopathic at this point, literally out of his mind. He's delirious. And part of his agitation and part of his suffering is the delirium. It's not just for him but for his life. We tried to back down on his pain medicine yesterday thinking that he was too soft on the one. You woke up a bed. I was actually able to talk to him. He recognized me. I got a call during the night but he was in pain. We started backing up on his medicine again. And then this morning I called again and he was still in pain so we went up in his medicine again. We came in there now and I can't elicit pain. I palpated over the site and he's not a tender there but he's clearly delirious. He doesn't recognize me this morning. So what do you do at that point?

Wouldn't the humane thing to do to be really relieved of the pain just let him sink into unconsciousness? Yes. Yes. Can you make that decision or does his wife have to make it? I think we make it in common. This works and you thought it would be. I just step back and let them do it. And that's hard. You can be a part of this. Any way you can, you know. Days you could be more involved in another day you can step away. We would understand. I also wanted to be engaged in the decisions. I think we're reaching the point where the best that I can do for him is to sedate him and let him die. I would prefer that he be alert and talking all the way up to infinity but I can't do that. What's the difference between this decision to sedate him and let him die? And what out there is called physician assisted suicide. That's a great question. There are several differences. One is in intent. I don't want this fellow to die and I'm not trying to will his death and I'm not actively trying to bring it about.

But I'm also not willing to let him sit there and suffer. And is there a hypocrisy here? There may or may not be. Creating a myth that makes me feel better about what I'm doing. That may be true. The firm about it and grows knows it. That's why it knows it and raking knows it. Which is that I'm not going to do something to bring about his death as a result of my actions direct as a result of my actions. But when we change, we must have changed the delotted orders. Am I willing to do things that may hasten his death? Sure. I'm not willing to give him fluids at this point. I'm not willing to put a feeding tube in him. For example, I'm not willing to treat an infection at this point. Or all those exercises and assisted suicide. I don't think so. I mean, that's a language that I'm comfortable with. I think one of the first principles of medicine is you do know harm. And if you can't act, so it's to make the patients life better. You step back and do something different. There's nothing medically that I think I can do at this point to make his life better.

But I damn well, I can't control his pain and his delirium. You can make his dying better. I can make his dying better. Absolutely. Not just for him, but for the family. I just wanted to talk about what's going on with Ricky right now. Before Dr. Gomez decides exactly what to do, he will try to understand clearly Rose's wishes and those of her dying husband. The thing that I think is painful for all of us to watch is when he gets out of his head like that, his delirium, you kept saying he's not Ricky and you're right, he's not Ricky. The only way that I know how to control that right now is to sedate him. Because when we try to lighten up on his medicine, he gets completely out of control. What it's going to mean though is that Ricky's probably going to be unconscious until he dies, or at least in and out of consciousness. He may respond by squeezing a hand. He may intermittently work at you, but he's not going to be thrashing about the way he is. When he's violent and all he's not Ricky.

And he can't control that for whatever reasons. And he's not being himself in a while. Occasionally, a few words, but then he's back to not being himself. And he wouldn't want to be that way. We discussed this when he was very clear-headed. He wouldn't want this. When he went back to Kentucky this last time, he'd been pretty clear with me that he wanted to have some time at home, walk through his church, say goodbye to his congregation, so I was able to do that. We had about four beautiful days at home. He went to church. We stayed through the meeting. He didn't participate, but he was there. Whatever made him feel he had to do that, he got to do it. And sedation is welcomed, I think. He would want that. Yeah, I agree. It's always a tough call, because the hope is always that you're going to be able to have some more quality time with somebody. And there comes a point where it sounds like whatever work he felt like he needed to do, he did.

And it sounds like whatever you needed to do with Ricky, you've done also. Did you talk to him about dying? Did you two discuss it together? Yes. Yes. I think the two weeks we were here before he had the opportunity to have a very good conversation with all of his family, people in the church, of what he wanted. And I think they had that opportunity, and I hope that they would be satisfied with that time they got while he was a clear mind. And he poured his heart out to everyone, including Dr. Gomez. He suffered enough, and he's tired, and he wants to go home. He's prepared. Yes. But his body won't let him, or something won't let him, you know? I don't know. He was a minister, he is a minister. Yes. So faith is clearly... He has a better place to go in our beliefs. And that's why... Does that make it easier? Yes. That is the only thing that makes it better for me. And, you know, he's tired.

He has a right to say, I don't want no more. And I think we should grant him that, you know? He's tried for us, and I think we should give it up for him. Every day, more of Jim Richards' nerve cells shut down. His spinal cord degenerates. His muscles waste the way. Are you any closer to a decision since I was here a month ago? Of course, you know, you can talk big, but doing it's a different thing. But my intentions are, at the point, where I begin to really have trouble swallowing. And before I lose the ability to sit in a wheelchair like this, I intend to go ahead and take some drugs. Do you have those drugs?

Yes, I have the drugs. I'm veterinarian. I have an narcotics license. You can always make a mistake, I guess. But I think I have exactly what I need. But if you wait, is there a danger that you might miss the moment that you won't be able to swallow? Sure. You know, I know I'm good now. I want to live a little while longer, so I'm going to push the envelope as far as I can. If you missed the moment and you were unable to do it, would you want Susie to help you? No, because she couldn't do it. She would feel guilty forever after. She would feel like a murderer. Could I put the poison to his lips? Not now. They come here, Garrett.

Get on his feet. The witcher's daughter, Marcy, has come from Maryland with her husband, Joe, and their three kids. The last time that they were here, he cried and cried, and said he probably ever see them as grandchildren again. I love you. Love you. I'm doing fine. Now, Marcy, I do have those juice things out there too, so. Whichever. It's not just him suffering as the whole family, because we're watching him. And I know what he wants to do, but I don't want him to do it. But I want him to be at peace. It's a struggle trying to figure out, okay, do I side with you? Or do I side with my heart? Or do I side with what? Society says to be, or what the legal system says you can do. I'm still struggling with what I feel. My father, we thank you for these, and all my blessings. For so many sins, you'll be for Christ's sake.

And dear God, thank you for letting us get back down here to visit with our family one more time. I think all of us have an idea of what we think we do in a situation. And when it comes to that time, we may change our mind. But he said, when I get to where I can't do anything for myself anymore, well, the first thing he said was, when I can't wipe my body myself, I don't want to live. The next step was when I can't feed myself, I don't want to live. Well, I'm having to feed him now. He's still wants to live. He still wants to see his grandkids. So far as having said, by such and such time I'm going to, he has not set another deadline to me now. I realize that, but now that I can't raise my hand, I'll get a bug or a hitch on my nose. And I just have to, it just might never matter. I'd never make it. He is worried that he's going to have to be able to administer whatever he chooses to do to himself.

And he's going to have to do it before he is totally incapable of doing it. He would have to swallow it himself, but with his hands. I know. How can he get it going? I don't know. I don't know. I don't know that I want to ask. You haven't asked him. Yeah, I have. And he hasn't really said. So I don't know that he's got something in the back of his mind that he thinks he can do or what. And it's not something I really want to talk about. And I know I need to and probably need to for his sake. But I'm guilty of keeping this as a business I can around here, so I don't have to face it. I don't have to explain that to you. You're doing a good job. You mean you just don't want to think about that moment. Right. You know, he's asking if I want to be there when he dies. I don't know.

Ooh. Get a little reckless there, Davis. Stop it! Stop it! You're a success and you're right. He wants his life to end... Yeah, on his own terms. On his terms instead of on the diseases terms. And I understand that. But who says you get to decide? Spirit members, meet it! That spirit, I think. It does remember you. The spiritual side of me says, that's God's decision. That's between you and God, Dad, and when God deems it necessary. And that's when it's going to happen. Remember, Sassy? Yes, Spirit. I always understood that suicide was wrong. It was a sin. And it was not a moral thing to do. With dealing with this situation, it blurs the lines. What I'm talking about is my choice.

This is what I want for me. And the only other thing I want is for society and people to talk about. Plan about it. Plan their own. Decide for their sales. To assure that he's not kept alive with artificial means, Jim has signed a living will. Susie knows what can happen without it. My mother died of ovarian cancer. I remember when she got to the point where she could not eat anymore and she refused to eat. I begged the doctor to put a broviac tube in her because I was still fighting to save her. That meant she had to be taken into surgery and have that inserted. And it probably might have bought her four weeks, you know, who knows. And looking back now, I'm so sorry I put her through that. It did not make her quality of life one bit better.

I shouldn't have ever done that. And I'm not going to do it to James because he's legally taking steps that he won't take it. I saw my mother suffer horribly. And it came to a point that I wish I could do something. I don't think I ever had the guts to help her die, but I feel really terrible that I sustained them, you know, that I made her miserable for that many more weeks. And that's just no way to go for anybody. The decisions doctors face with dying patients are not often addressed in medical school. Dr. Gomez won't his first year med students to start thinking now about how people die

and the issues they will face as doctors. He's intermittently lucid, but really not very well-focused. I don't think he is in so much pain as he is delirious. His liver is basically shutting down and roses there with him, his wife. He will probably die in the next two or three days as my gas. He's not getting food, he's not getting water, he's simply getting pain medicine, something for his delirious. So the question is, what am I doing for what purpose? If I felt that we could sustain Ricky's life in a way that he would want it sustained, this case would be entirely different. He says that he's ready to die. Now the question I've got is, what am I going to do with IV fluids and nutrition? What am I trying to accomplish? Is his wife trying to accomplish? I think. He's here from Dr. Gomez that he's no longer providing fluids or nutrients to Ricky's packet. It just seems to me that that's almost assisted suicide. Why? Because, I mean, water and food is just such a vital problem. I mean, obviously you have to have it every day.

And it just seems like that's the same thing as taking away medications. I mean, you're taking away what you need to live. The level of responsibility that a physician feels about end-of-life decision making. Susan Goens-Eppley, the university chaplain, teaches his ethics class with Dr. Gomez. You're saying, if I remove hydration, then I've done something that's going to hasten his death and you feel responsible for the fact that this man is dying. And you're not. He's dying because he's sick. And there's been a lot of intervention in between when he started to die, when he's going to die. I don't seem to have much of a problem with throwing ventilator in, you know, in his condition or other cases that we've discussed. But especially hydration and somewhat nutrition, I feel a little uncomfortable with that. And I understand if it's going to be invasive procedure where you've got to put in, you know, you've got to put in a central line, you've got to put in a feeding tube, all those things. I understand not doing that because that's invasive action. But the hydration seems like something you can do. I will bet you that if I hydrate him,

we're trying to hydrate him. Most of the fluid is going to go into his legs and his lungs because he doesn't have enough on cotic pressure as a fast-door system to hold the fluid in. At least at this stage of the game, you feel like you're training to preserve life. Where you learn about, you're learning everything that works in the body and that's your goal. And you know that, you know, that that's dying as part of it, but facilitating it or even accepting it. I don't think, you know, I know you have to learn to deal with it somehow, but it's not something that comes right away. Okay, so if you want me to explain... Dr. Gomez holds off another night, trying one last time to fine-tune Ricky's pain medication. It still isn't working. Last night, he doesn't know what he's doing. I mean, he got both hands trying to break my arm. And so I like, I'll step back and let the nurses do it. Maybe I'm agitating him. And I actually laid the cot out in the bathroom and tried to lay in there.

And I had to watch them try and use the restraints and hear him scream. You know, it was like we have broke horses. And it was a whole lot like trying to break a wild horse. I'm saying. I do know what you're saying. I don't think it's pain that's causing his agitation. I know he's, he intermittently complaints of pain. I'm not sure that that's what's doing it. I think it has to do with his liver failure. Okay, so Ricky, I can do almost anything I want as a physician to try and sustain his life. And I will ultimately fail. If on the other hand, the goal is more modest and different. It has to do with accepting the fact that we are all mortals and that there is something in fact absolutely natural about the fact that we die. And that people whom you take care of as their physician

are going to die, then it begins to raise all sorts of different questions. Not that the hydration question is important. It's actually very important. And if you feel a little morally queasy, which is what I think you're saying, I think that's a good thing. You should feel a little queasy. You should feel a little uneasy. It should make you think twice about what you're doing. These decisions should never be automatic or pedestrian. Because they're not. They involve the life of another human being. Ricky was really clear with me that the one thing he did not want was to clot and pain or suffering. I mean, he was just very... I mean, you heard it. I'm sure many more times than I did. So, Dr. Corbin, I've talked about it. I think this is probably the best solution. I want to sedate him, but sedate him continuously, rather than the out of hand. Every few hours I want to put him on something that is like out of hand,

means that there's going to be no more waking up. Okay, even for the area, even for the hilarious stuff, that won't be there. I would welcome that. You would welcome that. He doesn't want to be this way. That was his greatest fear was having. He knew with liver failure, the death you had to die. Well, you don't even die that path. Let's let him rest. Let's you rest. All right. The decision to increase Ricky's pain medication and withdraw fluid to nutrition invites death through the door. One by one, we die. Just as every life is a particular life, so each of us dies our own death. No matter how we plan for it,

we can never know for sure how death will come. Nancy Kuhnpacker came by today and we just had a little chat. Kitty has gathered her daughters Jill and Jan to talk about her last act and decide who should be there. I guess, you know, I haven't really thought through, you know, are we going to have like everybody here? Do you want to be here? Do you not want to be here? You know, Nancy does want to be here and that kind of thing. So I just, you know, that kind of stuff. We'll just think about it and talk about it later. Okay. So, are you comfortable with that? Okay. I had already said that I thought I'd want to be here. Yeah, I would too. They don't think it would be if you didn't want us here which are kind of intelligent. Oh, no. Yeah, that's totally not bad. I mean, I think that would be that's kind of a given at this point. You're just so ready to crawl.

You're just so ready. And then your mom and dad are going to have their hands full. Do you think about what's on the other side of death if there is anything? My belief is that you come here to resolve issues with the people that are around you and that you come back when you haven't resolved that issue because you've got to do it again. You've got to get it right. When you run into people you've never met before and it's just like they're a soulmate. You can't believe that you have so much in common and that you're thinking is so the same. Well, you've probably been with that person in a prior life. You know, it worked these issues out. I've got issues to work out with some of my family members. I'm going to have to do it again. And I hope I come back with my daughters and my granddaughter. There's a lot of things on the caretaker

that I don't know whether anybody realizes it but I get so tired. And I think I just wish this were all over. I wish I didn't have to go through this. I want this to be over. And then I think, but that means he has to die. And then I feel guilty for grabbing those feelings. When it's that person's desire that if all possible, they could have a physician assistant, think if I'm dead. Well, there's absolutely no hope. I think it's a kindness. I think it would be an act of love. But the law won't let Dr. Blanchard love that way. Or me. Or his son or his brother. Instead, we're going to be asked to watch him suffer.

He will die in agonizing death. I mean, suffocation or starvation, both. So at this moment, Susie, you don't know exactly what you're going to do when the moment comes and he says, I need help and I can't do it myself. I don't. You can always bear witnesses somebody's suffering. But there is something very powerful about your presence as the doctor in the room with the patient who is dying. Ricky Tackett's suffering is about to end. Within the next hours, he'll be terminally sedated. He died five days later.

Kitty Rail didn't get the months she thought she had coming. She died within two weeks of our last visit with her. It became harder and harder for her to get in and out of bed and get in and out of her chair. I came home one day and the hospice nurse was there doing something that she really didn't want to have done or it was really uncomfortable for her. She said to us that she finally just got to a point where she felt like she had no dignity left. And at that point, she said, I want to go ahead and do the pills and I want to get on with it. She said, you know, call Nancy. I'm tired of this. When Kitty asked her daughters to call Dr. Nancy Crumpackert to bring them medication, Jill convinced her mother to wait until morning because their uncle Tom was on a plane to Portland to see her. By the time Dr. Crumpackert arrived the next morning,

Kitty could no longer swallow. The thing that was really hard for me was I had been the one who said, let's wait for Tom. You know, let's not take him right now. And then suddenly it's too late. So I had some guilt there about that. But in the meantime, Uncle Tom had arrived. He had. She spoke to her. At that time, it was too late to administer the medication. So we kind of all just sat there, you know, held her hand to Jill and Trish were on one side and our cousin James and me were sitting on one side and our uncle and Jerry, the other friend. You know, everybody was just sort of gathered around. And then finally, there was just that last breath. You knew it. Yeah. Did she die the way she wanted? I don't know. I don't know if she did. The way she managed it did enable her to be surrounded by family,

to be relatively free of pain and to be at home. Seeing all of those ways, I think it was the way she wanted it. You know, that final 48 hours. That's true. The seasons have turned at the Witcher Farm in Louisiana. It's been six months since we last saw Jim Witcher and now he's dying the very death he didn't want. It is getting harder and harder for him to swallow and he gets very tired chewing. The creeping paralysis of ALS has reached his lungs and throat and the muscles of his diaphragm.

If he sits up, he can't breathe. And because of his difficulty swallowing, he isn't eating solids. About ready for some more tea? Two weeks ago, he had a crisis. That came into the room and found him blue. Susie rushed him to the emergency room in town, 45 minutes away. But he still wouldn't take a respirator or a stomach feeding tube. They're almost done. Dr. Blanchard sent Jim home with an oxygen tank and hospice care. What happens to you when you start to die? Is there an inborn? Oh, it's in you. It was here. I've got to marry you. Hospice workers visit several times a week, but Susie still does the lion's share of the work,

getting him up every day in his chair. Recently, they hired a neighbor to help relieve Susie who was buckling under the stress. She comes two days a week at their own expense. And what does Jim want Susie to do when his next crisis most surely comes? Just let me go. I want to try to honor his wishes, and I won't call the ambulance or anything. It's not going to be easy. In fact, I guess it'll be the hardest thing I'll ever have to do. You know, wish I could keep him alive.

I don't want to keep him alive, suffering either. I love you. After our visit, Jim Witcher made a decision to refuse medication and food. By the end of the week, he died. Susie scattered Jim's ashes over the horse pasture. On our own terms, continues on the web.

Explore the issues, share your stories, and hear from others. Find resources for help at pbs.org. In the next episode, a time to change. What would happen if you had to pay for this care yourself? I'd just be out in the garage and go ahead and put me under the garage. My goal is for people to be able to die peacefully. We can't make good deaths, but we can make better deaths. Read the people, own the care system that we're now very unhappy with, so we could fix it. Funding for this program is provided by the Robert Wood Johnson Foundation,

making grants to improve the health and health care of all Americans. The Fetzer Institute, supporting programs that explore the mind, body, and spirit. The Nathan Cummings Foundation, the Colberg Foundation, the John D. and Catherine T. McArthur Foundation, and by the Lawrence S. Rockefeller Fund. Corporate funding is provided by Mutual of America, building America's future through pension and retirement plans, encouraging dialogue, and discussion. The Spirit of America, Mutual of America. On our own terms is available as a four-volume home video set for 99.95 or 29.95 for individual episodes. Call 1-800-336-1917 or write to the address on your screen.