Every dying is different because every person is different. I flunked the hospice program; not many people can say that. Doctors die differently than patients.
She doesn't really know where she is, or she's not very with it right now. I don't want to suffer like that. See if every life on a machine just let me go and get it over with.
You can't kill her trying to save her. They have that conversation up front when things aren't so dire; it makes our job easier. Presently, we're still a death-denying society.
I'd like to just go to sleep one night, and that would be it. Now, nobody gets that lucky all the time, and I don't know. I don't want to be in agony and pain if I don't have to.
Deceased, departed, bought the farm, passed away; no matter how you say it, it happens to all of us. More than 2. 5 million people will die in the United States this year.
The quality of those deaths is often affected by where they occur, whether at home, surrounded by family and loved ones, or in the Intensive Care Unit, hooked up to pulsing machines with blinking lights. The difference usually comes down to whether you passed on your dying wishes before passing. This program was made possible by the David and Lura Lovel Foundation in support of Arizona Public Media's efforts to educate people on the spectrum of life options, and by the Marshall Foundation supporting charitable organizations in Tucson and Pima County, Arizona.
And by contributions to your PBS station from viewers like you. Thank you. Artemia Galan has always had a big heart.
She ran a boarding home where she took care of the mentally disabled and folks down on their luck. She also raised her grandchild as if he were her own son, adopting Adrien when he was eight years old. Now Artemia is the one receiving the care she’s always given.
You know, she helped me make the right decisions growing up. I know I wasn't the greatest, but she always kept me on a straight and narrow path to succeed in life. She's always been a strong woman—very strong, very feisty; doesn't take no for an answer.
"It's okay. It's okay, girl. We're all here, okay?
We love you. " She raised me, and then I joined the U. S.
Army. She hasn't been in the best health the last few years, and it's looking like now she's in a nice youth. I know decisions have to be made, but it's more of an emotional part of actually making that decision.
Making the call is hard. She's breathing a lot slower today; she cannot breathe on her own. So what we're looking at is quality versus quantity of life at this moment.
It’s very painful seeing her go through this. What we're trying to do is make the right decisions about what the future holds for her and what her quality of life is going to be from here on out. She's falling asleep; it's definitely harder to think of someone else, especially a parent, when making that decision about what's going to be best for them.
I just want to make her comfortable and grant whatever final wishes she has. You think you prepare for this, but throughout the years I've been preparing. Being stationed in Hawaii, I knew I'd be able to make the trip and make all the decisions.
You really don't realize how hard it is until you're actually in that position. Only 10% of us die from an acute injury anymore. Half of us are now dying of frailty and cognitive decline.
We don't die of one thing anymore; we die of many things, and getting older and frail. Sue Taylor lives this every day. She is a physician whose specialty is providing comfort to the dying and to their families.
Many of us still think that death is going to be so quick and easy; we hope for that. I mean, I kind of do—just go to sleep and not wake up; something will happen so fast. But the reality is that's probably not going to happen.
We're just going to get frailer and frailer. One thing will get fixed—your heart will be fixed, maybe your cancer will be fixed—but then over time, all the little things will add up. One reason for this increasing sum of maladies is that we are living longer.
A century ago, the average American life expectancy was just past 50; now most make it to nearly 80 years old. That allows people more opportunities to take advantage of the prolific medical advances that have occurred over the last decades. Today, physicians have the ability to keep their patients alive for days and even years longer, but that may not be what the patient wants.
My husband got sick a few years ago; he was very ill, diagnosed with lung cancer. He chose to do the radiation and the chemo, which meant he lost a lot of weight and was not able to do many of the things he had been able to do in the past. So at the end, it wasn't a lot of fun.
Watching him suffer, I went to some of the same doctors my husband used. They said I have lung cancer, stage four, and unlike my husband, I made the conscious decision I wasn't going to do anything. I didn't like what he went through; I didn't want to do that.
I don't want to go through the chemicals and all that, so I made the decision. decision: that when it was my turn to die, I would die. My husband and I were alike in a lot of things; some things we weren't.
He was afraid of death; I'm not afraid of death. It never happened. I had a great life, and I don't have anything to feel bad about when I'm gone.
I hope they have a party—go out and have a margarita or whatever. Have a party and celebrate because I've had a good life. [Music] Cocktails, golfing, and living the good life can make the end of life seem far away and difficult even to think about—much less to plan for.
Oftentimes, a sudden stroke, a fall, or a broken heart will render a parent unable to communicate and yet still alive. Then their children have decisions to [Music] make. He’s a good father; he was always a good father to me.
He's a good grandfather. He was very independent; he was a baker for 30 years. It was the hottest place I’ve ever been—in a bakery, it’s extremely hot.
I don't know how my dad did it. Mhm. He's strong; my dad's a strong man because my dad had a stroke before Christmas.
Two days before he was ready to come home, he had a heart attack. He wasn't strong for that, but doctors told me that my dad's not going to improve. So, uh, my dad had talked to me about what his wishes are if we ever come to this.
He's going to go on hospice. He told me, “Just let me go. ” I know he talked to me about it because he knows that I'll respect his wishes.
He didn't want his family to worry because he knows it could be an expense. So he was never afraid to talk about it because it’s something that’s going to happen eventually to all of us. But sometimes people don’t want to talk about things like that.
I’m glad my dad did. If you don't talk about it and try to make decisions before all this happens, then you’re kind of lost and everything's just chaos, you know? I don’t want that for my dad.
I want it to be peaceful and comfortable. Some people fight; they don’t know what to do or what decisions to make. That’s just so important because, you know, like I said, we’re all going to go through this, and it’s good for your kids to know what your wishes are and what you need to [Music] do.
Discussions about end-of-life can be some of the most difficult conversations that families, friends, and loved ones can have—but also some of the most important. To be effective, those discussions must lead to written documents called end-of-life directives. Each state individually dictates the type of legal paperwork people need to fill out to ensure their dying wishes will be granted.
Nationally, less than a third of us have done this. But there is one place—a town along the banks of the Mississippi River—that's different. Very different.
In La Crosse, Wisconsin, almost everyone—over 95%—have talked about and written down how they want to die. Facil with a 92-year-old female; she slipped and fell. Didn’t hit her head or anything like that; fell to her left-hand side.
No questions at this time. We’ll see you in 5 to 8. Honestly, it's easier to just be full court, be aggressive, do everything—you know, innovate the patient, do the shocks, do the chest compressions.
CU—those are the things that we know and do. I mean, we live for that stuff, but that's not always the right thing for the patient, and it’s not what they want. If it’s not what they want, then I don’t think it’s the right thing for the patient.
If we know what the patient wants, everyone’s in a much better, happier place because then we've respected what they wanted to do, and we’ve done the right thing. Everyone wants to do the right thing. I would say about 80% of the time we’re dealing with people who are seriously ill and are facing life-and-death decisions, and that care plan helps guide what we’re doing.
We’re talking about your preferences for healthcare. I've actually been pronounced dead three times already; that’s when I started thinking about it—what am I doing? When they brought up the advanced care directives, I thought it was a good idea.
Good morning. I don’t know if it changes how I feel about treating the patient. What it really does is make me, I think, more comfortable to have the conversation with the patient and the family.
I mean, we’ve got kind of a starting point. Okay, maybe I wouldn't have been comfortable bringing that up 30 years ago, but because we have that starting point, I think it makes it much more likely that we’ll be able to talk about it and have a very reasonable conversation with the patient and the family. There are two major health care centers in La Crosse: a Mayo Clinic affiliate, Franciscan Scamp, and Gundersen Health System.
It was here, 30 years ago, that Bud Hamus pioneered the effort to get people to begin these conversations while he was developing a curriculum for doctors and training. In that experience in working with these young doctors, I really saw the frequency with which we were facing kind of terrible decisions about someone's life, and they were terrible simply because we didn’t know what that person wanted. I was asked to talk with three separate families in about a two-month period, and each of these families was facing a similar.
. . Decision: What most struck me is the moral distress of the family members, not just in that moment, which was, you know, almost palpable.
You could feel the anxiety and distress that they were experiencing. But there was this realization that they would never get over this question; they would never resolve the moral uncertainty for the rest of their lives. That excruciating experience with the families led to the development of a program called Respecting Choices, which facilitates discussions for end-of-life directives.
We're going to Winona, Minnesota, to meet a gentleman and his wife to do a next steps conversation. In her three and a half decades as a nurse with Gundersen Verona, Lochman has guided hundreds of patients through these decisions. Today, she is traveling 40 miles north of La Crosse to talk to one patient she has never met.
"It's much better if it's at their patient's home; they feel much more comfortable there. A lot of times, there's lots of tears from family, and the talks can take place anywhere, including at the doctor's office or the kitchen table. The most important thing is just to have the conversation.
The ultimate goal is to have in place legal documents that communicate what the patient's wishes are when they are unable to speak for themselves. Those choices can request that the doctor pull out all the stops and do everything and anything possible to prolong your life, or you can choose to have them do very little, and anything in between. These discussions also lead to choosing a person to make those decisions for you if you become unable to decide for yourself.
We have a basic power of attorney for healthcare document that talks about who their agents would be if they weren't able to make their own decisions, and the biggest thing about choosing an agent is that you need to have someone who will honor your wishes. So in your own words, Tom, tell us your understanding of your health condition. "I have advanced prostate cancer.
That was what I was diagnosed with in March of 2011. It has since metastasized to my bones. " "So what symptoms are you seeing that he's having too?
" "I think this disease and some of the treatment and medications have caused some change in our relationship, and certainly our kids notice. You know, Dad doesn’t have the energy or the stamina that he used to have. A grandson wants to play kickball all the time, and I’m going, ‘I would love to!
’ So, kind of based on your conversations, would you want her to strictly follow what you’ve written down, or based on what’s going on, kind of make the best decision for you? " "Well, I’d like him to follow as close as possible, but again, this is one of those things that you fill out when you’re feeling really good, you know, and you think, ‘Well, I should probably have this in place. ’ The circumstances around a person failing, their body failing, are always a little bit different, and they’re there on the scene, and I might be sleeping or out of it, so I would want them to think of all those possibilities and make a decision that is sort of in line with what they see from the advanced directive.
" [Music] Yeah, medical personnel aren’t the only ones facilitating these discussions at Gundersen Health System; members of the clergy also help out. "I'm Tori; I'm an advanced care planning facilitator here. So I work with other health professionals.
Would you prefer to have your care focused on keeping you comfortable without using medical interventions to keep you alive? " "The problem is I know my body is weak and everything; there’s nothing I can do about it, 'cause, you know, if they put me on like a life machine, I don’t want to do that. My mother, she was on it, okay?
And she was suffering. Plus, my first wife, she was on it, and she was suffering. And see, I don’t want to suffer like that.
Yeah, see, if they ever use a machine, just let me go and get it over with. That’s the only way I can put it. " When people do choose to forgo some types of treatment, there is a direct effect on the financial bottom line of the hospitals.
Added to that lost revenue is the cost of providing this service. Undoubtedly, every year compared to the national average, there are tens of millions of dollars of revenue that we don’t get that others may. And when a CFO challenges me about that, saying, "Boy, but that’s hard.
Why would you do that? " I tell them that it’s our responsibility to deliver what matters to the patient and that we have no intention of balancing our financial books on the backs of seniors by overtreating them or giving them care that they would not want. It’s not clear that there’s anything about the demographics in our community that makes this successful.
We think what’s made this successful is our ability to engage our community and help them understand that this is of great value to them and to their families. When we understand the patient’s choice—and when I say we, I mean not only the health professionals but also the families—they have less guilt, less uncertainty, less distress, less depression, and less anxiety. So the emotional impact on them, when they know the choice of their parent, is far less.
And while they’re going to be sad about the loss of their parent, they’re going to move forward knowing that the care that was provided, and that they agreed to and supported, was completely in accord with what their mother or father wanted. Most families see that as just a tremendous gift, and it’s. .
. A great blessing is that they know they did the right thing at the right time. Timing is often crucial; it is never too early to pass on to your family what your end-of-life wishes are.
Sometimes, the prognosis for a person arrives before they've given it much thought. Suddenly, they find themselves considering the previously unthinkable. [Music] "Caner?
Uh, fin. Hi, Dolores. " "Hi, okay.
" Dolores Duarte has fought and won cancer battles before, but she won't win this time. Dolores, one of eight brothers and sisters, is learning about hospice care for the first time, along with their sister, Kemen. Modern hospice treatment first started soon after World War II in England and began in the United States in the 1960s.
To many patients, hospice remains a confusing concept, if they've heard of it at all. Hospice is a process to assist persons in their dying. Oftentimes, hospice is thought of as a place; it's not a place.
It is a way by which a team of people assist the family and the patient to die as well as they can, and to assist them in that process both emotionally, physically, and spiritually, so they can die well. [Music] For Medicare and many insurance plans to pay for hospice, two physicians must certify that the patient has less than six months to live. The national discharge rate from hospice, for example, is 19%.
That means many people get so well that they are discharged from hospice. When people stop medications, they often realize they were experiencing side effects. When you allow the body to heal naturally, when spiritual needs are met, and when reconciliation happens, people sometimes get better—not only spiritually but also physically.
An amazing number of them simply get better physically as well. "I was put in hospice, and then it was decided that I was not dying fast enough, so to put it most succinctly, I flunked the hospice program. My wife was in hospice as well; she did not flunk.
I have done quite a bit of reflecting, meditating, and praying. I dare say that my spiritual life has been enriched—that may be a big price to pay for spiritual enrichment. You got to die; but maybe that's part of the design of the universe.
I don't know. I don't pretend in any way or form to know what the furnit nature of heaven looks like or what the final future is all about—that's far beyond me. But I live in faith that it will all come together, that there is meaning rather than meaninglessness; that love, rather than hate, will be the final word; and that joy, rather than despair, will be the meaning of it.
" [Music] Given that death is as old as life itself, you'd think there wasn't much left to learn about it, but there is. Many institutions are doing research on different aspects of passing on, including at Stanford University School of Medicine in Palo Alto, California. But when you're imagining someone who has limited health literacy, limited English proficiency, and limited numeracy—this is what I'm going to talk about today.
V. J. Peroy, a doctor and professor, is a central figure in several of these studies.
In her research on cultural and ethnic differences in dying, she has spent countless hours listening to stories like these told at a church not far from the University. "Five years ago, my husband passed away at the age of 94. The family was never properly informed, probably due to a language barrier.
So, the doctor recommended chemotherapy. She saw the suffering and all the bad complications resulting from the chemotherapy, and I feel that if we had known what was to come, we may have chosen something differently. This has been my greatest regret since I came to the states.
The biggest barrier, the number one barrier that doctors report, is the language barrier because they have so much to say and they don't know how to say it across the language barrier. Sharing a common vocabulary is really important because if you don't do that, you may not be talking about the same thing. Medical interpreters are an amazing resource.
Sometimes, patients and families feel that even having that extra person during a private, confidential conversation with the doctor can somehow be distracting. In certain cultures, definitely, there is a taboo in terms of speaking of death and planning for death; it might actually make it a self-fulfilling prophecy, meaning you might be invoking death or hazing death by planning for it. We need to decide for ourselves how we want to live and how we want to be treated.
We don't know what the stages are that we need to go through or the terminologies involved, or the processes, or the options that we have. Finally, in view of these facts, we need to decide for ourselves what we wish to do with our end-of-life plans. We've worked with Chinese Americans, Filipino Americans, South Asians, and Vietnamese communities, and we found that especially among Chinese American and Vietnamese American families, as well as in some South Asian families, people are very reluctant to even think about planning for end of life, let alone have end-of-life conversations.
Having said that, when I've spoken directly with the patients—especially when they are older adults or when the patients know that they have limited time—they are actually eager to talk about it. I use the word "eager" in a very deliberate fashion; they are actually very eager to talk about it because they are worried about not knowing what is to come. " Want to better understand how to prepare.
They’re worried about being a burden on their family, and all of that creates a sort of sense of urgency in them to talk about this. In situations like that, it will often be the family—typically, it will often be an adult son or daughter—who cannot think about living in a world without their parents or don’t want to talk about their parents, you know, end of life. So they are the ones who may not want to talk about it.
Yes, the husband had suffered for 20 years as a result of a number of strokes before he went to his rest, and on second thought, looking back, if they had known what was to come, they would have decided differently. But they came with 10 years of suffering on the part of her husband and also on her part, and if they could decide again, she would let her husband go peacefully. What I found is that when you’re trying to push patients to quickly make decisions when they don’t feel that they have engaged all the stakeholders in their circle, things don’t go very well after that.
The physician tells the information to the patient; it’s full disclosure, and the patient tells you what they want. You work together to implement it. So that’s sort of the traditional mainstream model, but that may not work very well in certain ethnic cultures.
For example, in cultures where they make decisions together as a family, that’s one model where the entire family needs to be involved, and they all talk about it and make decisions by consensus. Another common thing that I have seen is where the patient might actually defer to someone in the family, and that person might be the oldest son; it could be the spouse, for example. In certain Asian and Middle Eastern cultures, if the patient is a woman, she might defer to her husband in terms of the decision-making, and that’s just their style.
When we see them in clinic, it’s our turf, so it feels very alien to patients, and that is very repressive in terms of them being able to talk very easily. I think that what we see with them is people being very quiet, being more in a listening mode, then the doctors immediately take on the role of instruction without quite figuring out how much the patient knows or what they understand. The key thing to do is find that trigger to get them to talk.
You know, “I lost my mom. What can we do to make your day a little happier? ” Often, the most important element of patient stories is their understanding of their condition and their prognosis, and there is only one way to find out: you ask, you ask, you listen.
What do people think they want? What’s their understanding of the big picture? When I was a young doctor, I thought I had a lot of answers, and I was trained that way.
I looked back with a little more compassion. I was trained that I was oh-so-smart and had all the answers; I had this vision that if I used big words and opined, people needed that. Now, I realize, maybe with my own wisdom, that people have a lot of answers.
They’ve had a lot of experiences, especially at this point, and they already know a lot. We start with understanding that this body is failing. They may not know all the details; they don’t know their sodium level or their creatinine or the exact valve diameter.
That’s not important; it’s the big picture. What is your perspective on the big picture in some of you or your loved one’s health? The second question is, what are you hoping for?
What do you want to have happen? What are your wishes? What are your values?
Finally, what are you most worried about? What are the things that you want to have done? What are the things that you are going to regret?
What is weighing on your mind the most? From that comes a treatment plan that’s based on what this person, this family, values the most. Every family has their own culture; every person is a mystery and a gift.
When you match a treatment plan to that, it works. Another technique that can work is reverting back to a way that medical care was historically delivered at home. Hello, I have been impressed by how much you learn about someone by going to their home.
Look for where they want to be able to take care of themselves and their own homes. When they say, “What’s quality of life when you’re getting older? ” that’s what they want.
How have you been feeling? “Are you feeling okay? ” “I’ve been taking care of Jane for three years, and her husband, Colonel Frank Klein, called to ask if someone could come to the home to help him take care of his wife, for her memory loss was getting worse.
His prayer is that he stays well enough to take care of her. “Are you going to walk? ” “Yes, he’s in his 90s; she’s in her 80s, and they’ve been married for over 60 years.
” “Be careful to walk. ” “I very much appreciate her coming here. I’ve got to be with her as much as I can because she’s prone to fall when she walks too long.
So I try to watch her pace, and if she looks like she’s getting tired, I’ve got to find a way to get her to sit down. That’s a challenge. My goal is simply to be here for her, and I know that my…” Children would like for me to have it easier, but it's a one-on-one situation with me.
If she were in a care home, it wouldn't be a one-on-one situation anymore, and of course, there's familiarity with the house here. So there's all kinds of advantages to having her with me rather than in a care home. For example, I suspect my children will put me in a care home when I'm gone.
You've got to have patience, and you've got to try to figure things out. That takes time because I've learned a lot by just listening and recognizing her attitudes, and I've got to fit in solutions to things that are problematic. That's all, but that takes a little patience, so that's a challenge.
I'll do it to the end, but you know, that's the way it goes, and that's the way evolution treats us. You know, we just live so long, and I try to live as long as I can for her. That's it.
Do you want to sit down a little bit? Want to sit down a little bit? Okay [Music].
Listening is essential. The firmly held beliefs of both the patients and their caregivers will dictate the type of care delivered by the visiting physicians. I've been taking care of Ruby for over 10 years, and she's a fighter.
She has a will to live. Her goals of care are to mostly be comfortable, but she wants to be treated when she can recover. Her son is dedicated to her, and he is not a medical person, but he is a dedicated son.
He's learned to do a lot of the things nurses do. She wouldn't be alive today if she had to sit in a doctor's office with all the flu, bronchitis, and all the coughing going on—too susceptible, you know? The lungs are weak; you're going to catch anything, and she'd be fighting it all the time because of the bleeding.
There have been numerous things that came up since I met you in 2004 that I beat. I think it's my home health care that I've gotten from you. I mean, everything.
If I hadn't had you as a doctor, I would probably have died a long time ago. Who's your power of attorney? It's John.
John? And he pretty much knows your thoughts on those things? Yes, he does.
You're fighting, and you're fighting, right? I'm a fighter, and he knows that. Yeah, when you're young and you're healthy, you know, it's easy to say, "Oh yeah, if I'm incapacitated and all that, you know, pull the plug.
" But when you're on your deathbed dying, that's certainly not what you want. You know you want to keep on living; everybody does. That's kind of the understanding that we have.
You know, like, I'll keep her alive as long as she has some sort of quality of life. I've been a fighter all my life, and I've been through some pretty close scrapes throughout my life, and I've just always said, you know, just like that train, that Little Engine That Could. That's me, and I never give up.
But I still want to live. I mean, why go when you're still healthy? Not really healthy, but you can't kill her trying to save her, you know?
And that's something everyone on this team has got to understand because she's frail, got bad COPD, and you just have to be careful. Thank you. [Music] For the declining practice of delivering medical care at home, house calls also changed.
Where people died 100 years ago, even more recently than that, death was something that happened all around us all the time, and people of all ages were dying. So it really was part of the fabric of our life. With the medicalization of life in general, most people died in the hospital, isolated from their families.
Even mortuaries, which originally had wakes and stuff at home, became much more isolated. I think our culture just progressively marginalized it, put it behind doors, and said that's not something we’re going to be involved with. But the hospice movement really brought it to us and said, you know, people need help and support and comfort as they die, and we're here to deliver that because the medical profession was not.
Now, we'd like to think that those worlds are coming together, and palliative care as a new specialty I think is evidence of the importance that physicians recognize in terms of providing care to patients. Traditionally, palliative care starts usually when somebody has an advancing condition, and it means to focus on the things that can impact their quality of life: pain and other symptom management, spiritual issues, family issues—all that whole spectrum that is so important to people but that for many years, physicians and other providers ignored. Palliative care brings to the front the idea that this is something we should always have in mind: our role is to comfort and support people.
Compassionate care always has a place in medicine. When you ask young physicians why they went into medicine, a lot of them say, "I want to cure cancer; I want to cure heart disease; I want to do all this stuff. " The reality is that the role of a physician or healer is, in many ways, to cure rarely, treat often, and comfort always—and not all young physicians understand that.
Not all elder physicians really understand that either. Schools are trying to emphasize the importance of compassionate end-of-life care, beginning with new students. One way is to have the future doctors consider their own mortality by filling out their personal end-of-life directives.
Did you all get a chance to fill out the living will? We're not going to collect it, but you went through the process; that's all I mean. You went through the process.
Doing this exercise for myself, which I hadn't done before, was really eye-opening for me. Honestly, it's uncomfortable to talk about death. The mother was panicking, "Why aren't you doing anything?
" You know, I thought it would be easier. A lot of times we think, "Why doesn't everybody have a living will? " You know, we give it to our patients; why haven't they filled it out?
It made sense to me, doing it, why it's not done more, just because it's hard to think about—hard to put yourself in that position. We recognize that we need to start early with students and introduce them to this concept, so they don't see death as a failure and don't disappear when their patients are dying because they feel somehow they've let them down. Once somebody becomes ill, the options, the ability to really comprehend, you know, gets compromised.
That’s why we like to start the conversation when it’s not an urgent or emergent situation. Urgent medical situations often mean more surgery, more medicine, and more interventions. Each of those pills and costly procedures must be paid for.
Great lady, born in 1925, she's 89 years old. She met and married my dad when she was in her early 20s, and they had 56 great years together. A few days before Mother's Day, Barbara Horvath was unable to recognize a picture of herself in her wedding dress.
For the last eight years, since her husband passed, she's been on a slow, steady mental decline, and now she is declining physically as well. Barbara has just been brought to the hospital from her assisted living care facility due to a series of mini-strokes. Hanging on, we had talked to the family—my brother and sister—and we all agreed on this comfort care approach when the time came.
When we came back into the room, she was hooked up to all the monitors, and they took the monitors off. Then it was like, "Oh crap, this is real; this is really happening. " You think you're prepared for it, and everybody says, "How are you doing?
How are you doing? " and you say you're doing okay, but it's different when it starts happening. I'd like to think that she could hear me and knows that I'm here; she doesn’t really know where she is or she's not very with it right now.
Our biggest concerns are that she is safe, she is comfortable, and that she's not afraid. But we have family concerns too about the financial aspects of her situation—just everything being so sudden. I don't know if most people realize that if you have a child with cancer, 50% of those families go into bankruptcy.
That's a child with cancer. For seniors, 25% go into bankruptcy, and 43% lose their primary residence. I know as a young physician I was never taught the cost of things and the burdens that that places on families, but when you ask an open-ended question, "What else have you been worried about?
" Money. Tell me about that. Well, I mean, I hear it from a lot of families that money has been a source of stress for the last year because what she had was dwindling and dwindling and dwindling, and we knew that we would reach a point that we would bottom out.
Doctors may not learn about the cost of the care they prescribe, but they know very well how to deliver care that will prolong lives that may be nearing their end. Well, the quantity of days the patient survives may be extended; the quality of those days often is not. This is a lesson nearly all doctors take to heart personally.
Doctors die differently than patients. We actually don't participate in medical care very much at the end of our lives. We die as well, and we don't go to the ICU; we don't, in general, get dialysis.
We've been surveyed: we don't get CPR; we don't get intubated when it's our turn to die. We are one of the highest users of hospice care. We want morphine; we want comfort; we want to be at home.
We do not participate in medical care. No one knows more about medical care at the end of life than doctors, right? No one knows more than surgeons what the outcome is likely to be, and yet we get the least amount of medical care.
Nobody is nearer to or has had more conversations with dying people than hospice workers and doctors. That's McGregor, a retired physician who has been involved in hundreds of such conversations, having practiced in New York City during the height of the AIDS epidemic. She has learned from them all.
Every dying is different because every person is different; every life is different. The generation that's aging now has much more curiosity about the end of life and wanting to go into that experience consciously and with preparation. It's interesting that I saw, in my career, a time when giving birth was very medicalized and kept behind closed doors.
There came a time when women said, "No, we want to participate in this experience. It's a transformational human experience, and we want to be conscious for it. " And so gradually, giving birth changed hugely from.
. . This very, uh, controlled experience transitioned to one where it was completely natural, and women and families were present.
And so, our generation now has aged to the point where the next major experience in life is dying, and we're bringing the same kind of curiosity to it, and the same interest in wanting to participate and learn from it. I find that very exciting. I've heard people say to me that they're more afraid of dying than they are of death.
I think people are really afraid of dying, uh, and the pain of dying, and the suffering of dying, and what might happen to the families around them more than anything else. All the preparation for passing on may not lessen the sorrow of death, but it can help prevent regret your surviving loved ones may feel. While death is the reality we all face, the more we pass on our preferences for the way we want to die, the less anguish our survivors will feel.
Someone said that one time when we come to that point of knowing that we're going to die, there is a sense of blessed recognition that we do recognize that we are going to die. To come to that place of acceptance and to be able to look at it fully and wholly, then we can move ahead. It's when we deny, and we shut off, and we don't talk about it that it becomes more difficult for us.
I think that presently, we're still a death-denying society. Very few people really are involved in talking about death and dying. The more we can get people to talk about death and dying, and about the end of life, and about advanced directives, and about those things that would assist them in their dying process, the better it will be.
There's something else that goes on when humans can recognize the end is close, that life force is shutting down. What we need then, um, fixing the little things no longer works. We need to come together and ask each other, especially family, "What do you observe?
What is your understanding? " And that's where the truth is, and the miracle of love and compassion, the miracle of opening ourselves to other possibilities when cure isn't possible, but comfort and beauty and reconciliation and love—that's those other [Music] miracles. [Music] This program was made possible by the David and Lura Level Foundation in support of Arizona Public Media's efforts to educate people on the spectrum of life options, and by the Marshall Foundation, supporting charitable organizations in Tucson and Pima County, Arizona, and by contributions to your PBS station from viewers like you.
Thank you. To order DVD copies of this and other productions from Arizona Public Media, please visit us online at azpm. org/g/DVD.
You can also find out more information about this program at passing-on [Music] dorg.
