The Balm of Gilead project puts the comfort and care of a hospice into a hospital setting, providing dignified, loving treatment for indigent patients. There, the caregivers help find financial resources for the uninsured and support family members.
TRANSCRIPT
BILL MOYERS: I’m Bill Moyers. In this final program of our series we’ll see that improving care for the dying is going to require a lot of sweat and work in the trenches of our Byzantine health care system. That’s where most of us will wind up at the end of life. According to a Gallup poll, almost all of us want to die at home, but in reality most of us – four out of five – will die in hospitals or nursing homes. The care we get there will depend on many people’s decisions, on who’s doing the caring and how it’s paid for, and on the system itself. But every death takes its own course, every family has a different set of issues, and not everybody has a place to die. So how is our hope for a good death going to be realized? Who’s going to take care of the nuts and bolts of dying? And how do we fix the system – our system? The people in this program have something to say about all of this. They are foot soldiers in the movement to improve care for the dying. They know that if we are to have a better death, now is the time to change.
Dr. AMOS BAILEY Constance Adley, Arthur Brown, Anthony Burton, Charlie Anderson, Daphne Bowman, Derek Brackens, Reginald Eatman …
BILL MOYERS: These are the names of the dead.
Dr. AMOS BAILEY: : Edward Chandler.
BILL MOYERS (v/o) Folks who’ve died here in the past six months.
Dr. AMOS BAILEY: : Arthenia Cooper.
BILL MOYERS (v/o) : Gathered are the families and loved ones of those who have died.
Dr. AMOS BAILEY: Bobby Jackson. Jimmy Jackson.
BILL MOYERS: Also gathered here are the caregivers, those who comforted the dying during the last months, weeks, and days of their lives; pioneers in a new movement to change the way we care for the dying.
Dr. AMOS BAILEY Lois Johnson.
BILL MOYERS: Here in Birmingham, Alabama a crusading doctor and his team are weaving a web of care for the dying and their families. Their effort has attracted nation-wide attention. Dr. Amos Bailey wants no less than to change the culture of dying in America. He labors in the very heart of a public hospital where he’s created a hospice unit called Balm of Gilead, after the famous spiritual.
Bailey and his team provide palliative care, a fancy word for comfort care, a holistic approach to caring for the dying.
Balm of Gilead is the first and only palliative care unit in Alabama and while it’s part of a new movement across the country, the Balm is different because it’s one of the few units that serves the working poor and the uninsured, the people who fall between the cracks of Medicaid and Medicare.
Constance Adley drove a school bus until breast cancer forced her to quit work. Now she is dying. Like the other patients on the Balm of Gilead, she no longer receives treatment to cure her disease. She’s been at home with hospice care.
Dr. AMOS BAILEY: Constance is 29 years old and she’s been on our home hospice program for about two months, but in that two month period of time she’s had to come back into the inpatient palliative care unit. This is her third time and we think that she will stay here now until she passes away.
BILL MOYERS: How long?
Dr. AMOS BAILEY: I don’t know for sure.
BILL MOYERS: What are you trying to do for her?
Dr. AMOS BAILEY: Well, we’re – we’re keeping her kind of sedated.
Dr. AMOS BAILEY: How’s that?
Dr. AMOS BAILEY: I’m giving her enough so that she can be awake and comfortable and be with her family for as long as ever that may be and I’m not trying to necessarily prolong this or shorten this. But I am trying to make that time meaningful and comfortable for her.
Dr. AMOS BAILEY: Constance, I’m gonna listen to your heart, okay?
CONSTANCE ADLEY: Okay.
Dr. AMOS BAILEY: Alright.
EDWINA TAYLOR: And I’m gonna listen to your lungs.
BILL MOYERS: The goal here is to stabilize dying patients so they can return home. They may have to come back when a crisis can’t be handled by family caregivers.
Dr. AMOS BAILEY: : The hospital was willing to let us do this because if we weren’t here, Constance would be in the hospital anyway. I mean, there was no way that Constance could be taken care of at home and she would be upstairs in one of the regular parts of the hospital kind of mixed in with people who had pneumonia and everything else and it wouldn’t really be concentrating on what her symptom control is.
BILL MOYERS: A single mother, Ms. Constance Adley has two children, age six and nine. While she’s here at the Balm of Gilead, her two sisters care for her children, as well as their own. They take turns sleeping in her hospital room at night.
Dr. AMOS BAILEY: How’s her son doing? Does he understand what’s happening?
VERONICA WHITE: (nodding) Yep.
Dr. AMOS BAILEY: How’s he taking it?
VERONICA WHITE: (wagging her head) Not too good.
Dr. AMOS BAILEY: Not good.
VERONICA WHITE: I, uh, talked to one of the nurses yesterday about seeing about him getting some counseling.
Dr. AMOS BAILEY: Right.
VERONICA WHITE: Cause he gonna need it. He needs to start now.
Dr. AMOS BAILEY: Have you talked to his school?
VERONICA WHITE: Yeah, I talked to them and they said they were going to try to get some help for him.
Dr. AMOS BAILEY: Okay, cause there is a pretty good counseling system through the Birmingham Schools. I’ve dealt with them before. And then Magnolia Place is a place for children who have had losses and, uh, I’ll get Jane to hook you up there.
VERONICA WHITE: Okay.
Dr. AMOS BAILEY: Okay?
VERONICA WHITE: But – she’s not going to get no better is she?
Dr. AMOS BAILEY: No. I think that she will stay here in the hospital from now on. Okay?
EDWINA TAYLOR: Can we do anything to help you?
VERONICA WHITE: I’m alright.
EDWINA TAYLOR: Okay.
EDWINA TAYLOR: You know what?
VERONICA WHITE: (wiping tears) I read the book.
EDWINA TAYLOR: Good.
Dr. AMOS BAILEY: Okay.
EDWINA TAYLOR: You’re a wonderful sister. Okay?
VERONICA WHITE: Yes ma’am.
EDWINA TAYLOR: You are doing a wonderful job. Everybody should have a sister as good as you.
Dr. AMOS BAILEY: Mrs. Adley has a very supportive family. But she’s 29. They’re very young. It’s not real realistic to think that they’re going to be able to pull it all together to be able to handle her at home, you know, continually.
EDWINA TAYLOR: I wrote letters for both of her sisters to have a leave of absence from work. And, even doing that they’re not able to, as they said, really concentrate on taking care of her solely. They have to make sure those six children are okay.
Dr. AMOS BAILEY: And, they’re taking off from work, but without pay.
EDWINA TAYLOR: Without pay, yeah. So, they’re making a huge sacrifice.
BILL MOYERS: So, dying is a real spiral for the whole family?
Dr. AMOS BAILEY: It impoverishes a lot of people.
EDWINA TAYLOR: Right.
BILL MOYERS: What about her children? Have they come to see her?
VERONICA WHITE: Yeah.
SHERIAN ADLEY: Yeah, we brung them on Tuesday. It was her oldest little boy birthday. He turned nine.
SHERIAN ADLEY: I have two, she have two and Constance have two so…
VERONICA WHITE: There’s six childrens in all…
SHERIAN ADLEY: I have to let her be there with the kids and stay here with her because she just don’t want to be alone.
BILL MOYERS: I have a hard time imagining a mother of 29 dying.
SHERIAN ADLEY: Me too.
VERONICA WHITE: We don’t have a mother nor a father.
VERONICA WHITE: It’s just us three.
BILL MOYERS: It’s obviously a great comfort to you to have her here with Dr. Bailey and Edwina.
VERONICA WHITE: Yes. She don’t trust nobody else. She says he’s good to her.
SHERIAN ADLEY: And Edwina.
VERONICA WHITE: Yeah.
BILL MOYERS: What are you doing with the stress to take care of yourself? How are you handling this?
VERONICA WHITE: I just pray and go on. As long as the Lord give me strength to come and see about her, I’m alright.
BILL MOYERS: Every death is a particular death isn’t it?
Dr. AMOS BAILEY: Mmmm. Yes. It’s – they’re all very different and this is not an easy one.
EDWINA TAYLOR: And especially with her children. Nobody can mother your children like you can and I think that is such an enormous issue with her that all I can think of when we see her every day is that like that poem says, she won’t go gently into that good night. It’s going to be a struggle all the way.
BILL MOYERS Birmingham was once a mighty Iron & Steel town, “the Pittsburgh of the South.” In the 1960’s it became infamous for its violent resistance to civil rights. Today, health care and biotechnology have replaced the rusty foundries. Yet in this biomedical hub, a third of Birmingham’s population lacks health insurance. And of Birmingham’s 21 hospitals, only one is a safety-net hospital, treating people regardless of their ability to pay – that’s Cooper Green hospital, home to Balm of Gilead.
Bailey oversees the care of patients here at the Balm of Gilead, as well as some 30 patients who are receiving hospice care at home from Birmingham area hospice. He’s medical director of both and every week he brings the two teams together, since his patients often move back and forth between home and hospital.
Dr. AMOS BAILEY: The other issue is about there are two different dads and about whether or not who’s going to get custody.
JANE LEE: Well um, she didn’t tell me that there were two different dads.
Dr. AMOS BAILEY: Two different dads.
JANE LEE: But she did say that the father would be taking the children at that point.
BRENDA DAVIDSON: But she’s put out a paper now that she wants her sister to have ‘em.
JANE LEE: Oh really?
Dr. AMOS BAILEY: I think her concern is that he only wants one and not the other and she doesn’t want to break them up.
WOMAN That’s what she stated. That’s what was stated.
BILL MOYERS: Around this table are nurses, home health aides, social workers, ministers and even a musician. All part of a team assembled to provide continuing care.
Dr. AMOS BAILEY: Let’s talk about James who’s 48, has HIV, congestive heart failure, strokes, and was non-compliant with medicine, but since being at home is compliant now.
Dr. AMOS BAILEY: We have a meeting twice a week where we sit down and we talk about what everyone is doing for a particular patient and we come up with a plan and the plan is about taking care of the physical needs, but what are we doing about that social problem of no one to help the wife take care of the husband? What are we doing about someone whose living in a condemned building because they can’t find other housing and we’re trying to find new housing for them or they don’t have any income because Social Security has turned their disability down again and they have to reapply. So, we address those things every time we sit down to talk about a person.
Dr. AMOS BAILEY So we’ll just have to see what the situation is and whether living at home without a permanent caregiver is a reasonable option for him.
EDWINA TAYLOR: Ms. Harris, would you order some watermelon for Ms. Everson for lunch, please? Thank you.
BARBARA SUNDAY Okay, let’s see. How is that?
MR. WILL ALLEN …all the way up to the top…
BARBARA SUNDAY: How is that?
ALLEN …all the way up…
BARBARA SUNDAY: : Is that good?
BILL MOYERS: The first priority at the Balm of Gilead is physical suffering, alleviating the patient’s pain and distress.
Dr. AMOS BAILEY: Suffering has four aspects. There’s physical suffering, there’s emotional suffering, there’s spiritual suffering and there’s all kinds of social suffering. But, you cannot take care of someone’s emotional and spiritual and social suffering if their physical suffering is unmet, because if their physical suffering is unrelieved, then nobody, the patient, the family, their friends can focus on anything else.
EDWINA TAYLOR: Are you having any pain anywhere else besides your swallowing?
SHIRLEY EVERSON: Right now?
EDWINA TAYLOR: Yeah.
SHIRLEY EVERSON: Not now, no.
EDWINA TAYLOR: Not now no, okay. Alright. Well could you rank your pain and your swallowing for me? You know zero is no pain and five is the worst pain in the world like having a baby.
SHIRLEY EVERSON: …
EDWINA TAYLOR: You’re about a three today?
SHIRLEY EVERSON: Yeah.
EDWINA TAYLOR: Okay.
BILL MOYERS: Treating pain as the fifth vital sign is one of the groundbreaking innovations of the palliative care movement.
Dr. AMOS BAILEY: There are four vital signs traditionally: your pulse, your blood pressure, what your respiration rate is, and what your temperature is and so someone came up with the idea, and it wasn’t me, that you’d have a fifth vital sign, and the fifth vital sign would be is you’d ask somebody what they’re pain was like, but we’ve gone beyond the fifth vital sign. We understand that this is how people can rate their pain, but they can use this same kind of method to rate how their appetite is, how their breathing is, and some people just use it to tell me how they feel in general.
EDWINA TAYLOR: You know my little chart that I always have. I want you to tell me where on this you would put your breathing? This is no difficulty and this is you can’t breathe at all hardly. Where – how would you say your breathing is doing?
MS. LORENE CURRY: About four.
EDWINA TAYLOR: You’re still having a good bit of trouble then?
MS. LORENE CURRY: Uh huh.
EDWINA TAYLOR: One of the things we do is we don’t use oxygen mask. We use nasal prongs, because put a mask over your face, it smothers you. You know and –
Dr. AMOS BAILEY: You can’t talk.
EDWINA TAYLOR: You can’t talk. You – you don’t feel like you can breathe good, although you’re getting so much air into your face, its like being in a wind tunnel, um, and people –
Dr. AMOS BAILEY: You can’t communicate.
EDWINA TAYLOR: who are trying to save lives are using measures like this are to, are clinically correct, but comfort-wise they’re disastrous for the patient. They make ‘em feel bad. And those kind of invasive things are things that we can avoid and make people more comfortable.
MS. LORENE CURRY: But somebody called my sister – she was up north – and she done got here and she worried to death and she’s not going to leave until she sees I’m better.
EDWINA TAYLOR: I just try to enjoy time with them, to really listen, really pay attention. I try really hard to pay attention.
BILL MOYERS: Listening is important to them for them to talk…
EDWINA TAYLOR: Right.
BILL MOYERS: To feel that you’re listening that you’re their witness to death?
EDWINA TAYLOR: That’s the greatest gift you can give to a person is to really listen to them, and to pay attention, and I think that if I can give that gift to a person, then I’ve done my best.
EDWINA TAYLOR: Hey buddy, I hadn’t seen you in a while. How ya doing?
EDWINA TAYLOR: Nobody wants to die alone, and if you can stand with the person – you don’t have to say anything profound. We don’t have profound enough things to say. But it’s such a powerful thing for them to know that they have somebody standing with them, that its okay to talk about dying too. They don’t feel like its okay to talk to their families sometimes. I mean how many times have you heard people say, don’t tell mother she’s dying.
Dr. AMOS BAILEY: Yeah, mother won’t be able to handle it.
EDWINA TAYLOR: Mother won’t be able to handle it. Mother might start crying or something, well so what. You know that’s a natural emotion.
Dr. AMOS BAILEY: Right.
EDWINA TAYLOR: What the problem is, they can’t handle mother knowing that, so it’s important for us to kind of stand in the gap and enable them to honestly communicate with each other. At least give, give the family and the patient us to honestly communicate with.
Dr. AMOS BAILEY: You know, whatever he wants and Fred said ‘I want a beer’ and they said ‘You can’t have a beer’ and he said, ‘Yeah, my doctor said I could have a beer. It was okay.’ (Moyers laughs) Cause I told him he could have two if he wanted to.
BILL MOYERS: So the philosophy is let him have what he wants, as long –
Dr. AMOS BAILEY: That’s right. If he wants to eat bacon, why not?
BILL MOYERS: Every Friday bailey makes house calls to patients receiving hospice care at home.
SHIRLEY DAVIS: Is that enough Coke to take it with or you need more?
WILLIE FRED DAVIS: Mmm-huh. And then that’s my other one, that three-a-day.
WILLIE FRED DAVIS: Heart.
BILL MOYERS: Willie Fred Davis is dying of lung cancer.
WILLIE FRED DAVIS: Give me all the stuff to make my heart – make me feel better, then give me that to slow my heart down.
BILL MOYERS: With the help of Birmingham area hospice, he’s been able to stay at home. His wife Shirley is his round-the-clock caregiver.
SHIRLEY DAVIS: Well you go take your nap. I’ll be here if you need me, you can holler.
WILLIE FRED DAVIS: …calls why don’t you tell him I said to come on over here.
Dr. AMOS BAILEY: Mr. Davis has had some pretty rough times. He’s not as active as he once was. He continues to lose weight.
WILLIE FRED DAVIS: …lay down…go to sleep a little bit.
Dr. AMOS BAILEY: He has a loving wife who is in pretty good health. He has children who are nearby and so he’s gonna be able to stay at home. There’s really not gonna be any reason why he would have to come back into the hospital, probably. I mean, there is a potential for some sort of crisis that we couldn’t handle at home, but this is your more typical hospice patient that should be able to stay at home.
Dr. AMOS BAILEY: Hello, Mr. Davis. It’s good to see you, and I brought some friends with me today.
MR. DAVIS Alrighty.
Dr. AMOS BAILEY: This is Mr. Moyers.
BILL MOYERS: How are you Mr. Davis? Thanks for letting us come.
WILLIE FRED DAVIS: You’re quite welcome.
Dr. AMOS BAILEY: How are you today?
WILLIE FRED DAVIS: I don’t feel all that good. I’m weak feeling.
Dr. AMOS BAILEY: Can I sit down?
WILLIE FRED DAVIS: Kind of been all week.
Dr. AMOS BAILEY: You’ve been feeling weak all week?
WILLIE FRED DAVIS: Yeah. Had some dizzy spells Tuesday.
BILL MOYERS: Cassandra Jackson is Mr. Davis’ hospice nurse.
BILL MOYERS: How often do you come?
CASSANDRA JACKSON: I come once or twice a week. It just depends on –
WILLIE FRED DAVIS: Once or twice a week and calls three to four times a week. [laughing]
CASSANDRA JACKSON: I think I bother him so much. I call him all the time, but when he’s asleep, I talk to his wife, and she lets me know how Mr. Fred is doing.
WILLIE FRED DAVIS: Yeah, she calls regular.
BILL MOYERS: So what is it you try to do?
CASSANDRA JACKSON: I come out and I try to make Mr. Fred comfortable as he can be at home. We make sure that the patient is comfortable and the caregiver is comfortable.
WILLIE FRED DAVIS: If I’m about out of medicine, it’s either then or that day or first thing next morning. I don’t run out. She checks it. If it’s enough for the one day, I’ve got it the next day.
BILL MOYERS: Willie Fred Davis had no income once he got sick and no health insurance. And at 53, he was not yet eligible for Medicare. Davis applied for Medicaid to pay for his medical expenses and for disability, to have something to live on.
BILL MOYERS: Can you tell me how much you get?
WILLIE FRED DAVIS: Eight –
SHIRLEY DAVIS: Eight hundred and twenty-one dollars a month.
WILLIE FRED DAVIS: Eight twenty-one a month.
BILL MOYERS: A month.
BILL MOYERS: But in Alabama, if you earn more than $454 a month on disability, your Medicaid is cut off. You then have to wait two years after you get disability for Medicare to begin covering your medical expenses. By that time, most of Bailey’s patients have died.
BILL MOYERS: Without insurance life is kind of chaos isn’t it?
Dr. AMOS BAILEY: Right. Mrs. Davis, you don’t have insurance do you?
WILLIE FRED DAVIS: Can’t afford it.
WILLIE FRED DAVIS: Got to have two jobs to have insurance.
SHIRLEY DAVIS: And you can’t afford a doctor, if you don’t have insurance.
BILL MOYERS: So what do you do?
SHIRLEY DAVIS: Without.
BILL MOYERS: You don’t go to a doctor?
BILL MOYERS: How is it, Mr. Davis, that you wound up without any insurance?
WILLIE FRED DAVIS: Companies I’ve always worked with – I ain’t never worked but with one company that had insurance.
BILL MOYERS: What did you do for a living?
WILLIE FRED DAVIS: Well I’ve done uh, truck driving and maintenance and, uh, I worked an oil field in Texas out there, and I worked asbestos out there, and I did insulation work insulating houses back when I was a lot younger. Blowing it in the ceilings and putting it in the walls and everything, and they say that’s where I got most of my asbestos from.
BILL MOYERS: So none of those companies provided insurance?
BILL MOYERS: Well now what was it that enables someone like Mr. Davis to be here at home?
Dr. AMOS BAILEY: He has a home to go to, that’s a very important thing. He has his utilities on. We go to places sometimes that don’t have electricity or what’s really a problem is no phone, because if he doesn’t have a phone there’s no way for him to call and tell us if something was happening or Ms. Davis to call and tell us something is happening and he has a family that is able to stay with him. He has the basic things that you have to have in order to be at home.
BILL MOYERS: But do a lot of people that you deal with not have these things we take for granted?
Dr. AMOS BAILEY: There are, yes. Phones are a luxury.
BILL MOYERS: What would happen if you had to pay for this care yourself?
WILLIE FRED DAVIS: I’d just be out in the grass and go ahead and put me under the grass.
BILL MOYERS: The cost of caring for patients like Willie Fred Davis poses a challenge for Greg Townsend, administrator of Birmingham Hospice. He’s in charge of the bottom line.
JACKSON : Greg I have some prescriptions. A list of our patients. I made copies of – what I’ll do I’ll just put the prescriptions back in our office.
GREG TOWNSEND: Mmm-Hmm.
BILL MOYERS: When they are reimbursed at all, Birmingham Hospice is payed just ninety-five dollars per patient, per day from Medicare and Medicaid.
GREG TOWNSEND: And all the services that we provide, the medical director, the nursing services, the social services, the DME, the drugs, the home health aide services, all the services that we have to offer are taken out of that daily reimbursement rate.
GREG TOWNSEND: …you called about geomat for…
WOMAN: Not geomat, uh.
GREG TOWNSEND: What was it?
WOMAN: A low air-loss mattress.
GREG TOWNSEND: A low air-loss mattress.
WOMAN: What’s the price?
GREG TOWNSEND: $700 a month.
WOMAN Hahhh.
GREG TOWNSEND: That’s the discounted price, they normally charge about $900 a month.
JAMES BOLDEN: The challenges that Greg was mentioning that the hospice nurses deal with they also deal with in the inpatient setting on the Balm of Gilead.
BILL MOYERS: James Bolden is Townsend’s counterpart at the Balm of Gilead.
BILL MOYERS: Who’s making up the difference between what you get reimbursed from – Medicare-Medicaid insurance and the real cost?
JAMES BOLDEN: Um.
BILL MOYERS: Taxpayers?
GREG TOWNSEND: Yes.
JAMES BOLDEN: Yeah, with the county indigent fund at Cooper Green Hospital, it’s heavily reliant on that county indigent fund.
BILL MOYERS: In fact, Bolden manages a complex mix of reimbursement from Medicare, Medicaid, church contributions, foundation grants, and the county indigent fund.
GREG TOWNSEND: One thing we do know is that a regular – a routine hospital day can cost up to fifteen hundred dollars. And if we can provide care in the home rather than that person going into the hospital, we could save a thousand dollars, or more by providing that care in the home.
BILL MOYERS: The driving force of the home hospice movement comes from caregivers like Cassandra Jackson, a nurse for more than twenty years. Daily, she travels the length and breadth of Jefferson county to check on her patients; this afternoon it’s Faye Burch.
FAYE BURCH: Dixie. Dixie. Uh, ignoring me. Come here. Dix. Come here. Come here. Come here.
CASSANDRA JACKSON: Mrs. Burch, when she was first admitted to our program, she was very, very lonely. The day that I admitted Mrs. Burch, she had me with teary eyes because she was very teary-eyed. And her main complaint was depression and loneliness. Sometimes, uh, she will call hospice and tell hospice that she’s alone, she wants to commit suicide. I have no one to help me, I have no one to get my medicines, I have no one here with me. When the hospice nurse on call or myself call Mrs. Burch back, she will say, well, I was just lonely. And I thought I would just tell you that, so maybe you can come visit me. It goes back to her family situation. She’s unhappy because of her relationships with her sons.
BILL MOYERS: Faye Burch is estranged from two of her sons and lives with another son who’s seldom home. Hospice usually requires a full-time family caregiver, but Dr. Bailey and Birmingham Hospice try to adapt to each family’s situation.
CASSANDRA JACKSON: Good evening Mrs. Burch.
FAYE BURCH: Hi.
CASSANDRA JACKSON: How are you feeling today?
FAYE BURCH: I feel pretty good, I’m having trouble breathing –
CASSANDRA JACKSON: Having trouble breathing?
FAYE BURCH: Must – must be the weather.
BILL MOYERS Ms. Burch was herself a nurse. She worked two jobs while her sons were growing up, but when she got sick she had to quit work and then she lost her health insurance. She was forced to go on disability. Cassandra Jackson comes to see her a couple of times a week.
CASSANDRA JACKSON: So have you been lonely lately?
FAYE BURCH: Lonely?
CASSANDRA JACKSON: Mmm-huh. Have been lonely?
FAYE BURCH: Yes.
CASSANDRA JACKSON: But –
FAYE BURCH: It gets old staring at four walls and a television.
CASSANDRA JACKSON: With hospice, you can’t be in and out real fast. You have to take your time, you have to be there.
FAYE BURCH: And I watch TV and nod off, that’s – that’s my night.
CASSANDRA JACKSON: Sometimes, it’s just holding the patient’s hand. Sometimes, it’s just watching TV. Sometimes, it’s reading. Sometimes, it’s just being there, just listening to what the patient has to say and if the hospice nurse can take the time or spend the time, you will learn something on each visit.
FAYE BURCH: I just – I felt better about the whole situation, about my, um, illness, about it being terminal. I know that. (crying) For the most part I’ve accepted it, but it’s hard when you have family, you don’t want to leave ‘em. I’m not afraid of dying, I just don’t want to die by myself.
CASSANDRA JACKSON: What about your two other sons? Have you talked to them about —
FAYE BURCH: No. No.
RICHARD EVANS: I talked to them briefly, but sometimes it’s – especially with my oldest brother, its almost like, you know, talking to a brick wall, you know, it’s just like psshhh…
FAYE BURCH: He doesn’t want any part of it. And right now what expenses, like on my medicine I need help with, it’s up to Richard, you know, and that’s not fair. I’ve got three sons and they ought to all pitch in and help him. If not for me, for him. It makes it hard on him.
Dr. AMOS BAILEY: She really struggles with this estrangement that she has from her own children and she’s a demanding person. And, they may be burned out. I mean, it – I’m not going – the fault is on both sides.
EDWINA TAYLOR: Mmm-hmm. We do a lot of counseling with the families.
Dr. AMOS BAILEY There are four things that people have to do. They need to be able to say ‘I forgive you, please forgive me, I love you and goodbye.’
EDWINA TAYLOR: And thank you.
Dr. AMOS BAILEY: And thank you.
EDWINA TAYLOR: It was five. That’s right.
Dr. AMOS BAILEY: And thank you.
EDWINA TAYLOR: Right.
Dr. AMOS BAILEY: We probably need to give him something for his…too …and I’ll write that later today. Alright, how is Fred doing?
CASSANDRA JACKSON: Fred is doing okay. I saw him on Monday. He’s complaining of more pain in both shoulders. He told me his pain was at a five. Fred doesn’t want to be asleep all the time. He wants to still get out and go. So, therefore, he won’t take his pain medicine, but when he does take it his pain is relieved.
JACKSON You all doing pretty good today?
SHIRLEY DAVIS: Oh yeah.
CASSANDRA JACKSON: Good. Mr. Fred back here?
SHIRLEY DAVIS: Yeah.
WILLIE FRED DAVIS: Hey darling!
CASSANDRA JACKSON: Hi Mr. Fred.
WILLIE FRED DAVIS: How you doin’ today?
CASSANDRA JACKSON: How you feeling today?
WILLIE FRED DAVIS: I’m here. Look at you, got another hairdo now.
CASSANDRA JACKSON: Yeah, got another hairdo. So how many beers you drink in a day with your medicine?
WILLIE FRED DAVIS: Uh, I ain’t drank a whole one in five days.
CASSANDRA JACKSON: Five days. Okay.
WILLIE FRED DAVIS: [laughing] I ain’t dranked a whole one in five days. I just don’t care much about it and if I get one I just sip around on it.
CASSANDRA JACKSON: So have your appetite decreased in the last two weeks?
WILLIE FRED DAVIS: Uh, it’s about the same in the last two weeks, isn’t it?
SHIRLEY DAVIS: Yeah, it hasn’t got much – much worse, but he still don’t eat – he’s got to where he eats, you know, four or five times a day and instead of just eating three times a day.
WILLIE FRED DAVIS: Snack.
BILL MOYERS: Do you find yourself often nursing the family more than the dying person?
CASSANDRA JACKSON: A lot of times I do, especially that wife that has been married to that man for thirty, forty, fifty years. You have to take care of that wife or that caregiver. Listen. Let them do the talking. You have to just be there to comfort them and to let them know that even though your loved one is dying, I’m here, I’m here for you, I’m here for your loved one.
CASSANDRA JACKSON: So now the medicine that we increased on last week – if you’re still having pain, more pain, you can increase that to three pills twice a day. So it just depends on how your pain is.
WILLIE FRED DAVIS: In other words I don’t want to overdo myself. You know, like you said he wants to keep the pain down, but I don’t want to immobilize myself to where I can’t do nothing except lay around. I – I’d just as soon take that pistol laying in there and be gone.
CASSANDRA JACKSON: Mmm-hmm.
WILLIE FRED DAVIS: Before I just have to lay there all the time.
CASSANDRA JACKSON: Mr. Davis for the past two to three weeks – he was still trying to hold on. He was on a morphine pump. I upped the pump to relieve his pain. Mr. Davis told me, well, you can cut the pump down because I don’t want to sleep all the time. If I die and when I die, I’ll die sitting up. I will not lay in that bed and die and he did not lay down and die. He was sitting up. He woke up one morning, he told his wife he was smothering and that he was dying.
SHIRLEY DAVIS: Watch that pot down there now.
WILLIE FRED DAVIS: I’m watching where I’m a going, just get out of my way!
CASSANDRA JACKSON: She called hospice, she called me and when I got there, he was dead and he was sitting up in the bed with his feet hanging on the side. He died on Thursday, his birthday was Friday. His family had planned a birthday party on Friday, so when he died on Thursday, all of his family came from Walker County, a lot of family members. I had never met these people before, but they came in and they talked to me about Fred’s childhood, and it was just, it was just a time. It was a happy time, even though he was gone but his family was so happy knowing that he had gotten the best care that he could have received in the end.
BILL MOYERS: What about Faye Burch? How did she die?
CASSANDRA JACKSON: Ms. Burch was in the hospital maybe two weeks with pulmonary fibrosis, end-stage problems with her lungs and she stayed in the hospital on the Balm for about two to three days, and she went home. And after she went home, I think she realized that she was going downhill, did not have a lot of support from her family, and I think she just more like gave up. On Thursday, her son called me and said that she was not responding and as – after I got there and listened to her vital signs, she was – she did not respond to me either. So, we called an ambulance and she was transported to the Balm of Gilead and she died within two days.
BILL MOYERS: Did she die peacefully?
CASSANDRA JACKSON: She died peacefully.
BILL MOYERS: Well, there had been some difficulty in the family, some alienation. Do you think reconciliation occurred?
CASSANDRA JACKSON: No. It never did.
Dr. AMOS BAILEY: There are people who die here who we don’t feel like we have accomplished the goal of relieving their suffering. I mean there are people whose emotional and spiritual situation never became reconciled.
EDWINA TAYLOR: Right.
Dr. AMOS BAILEY: And it’s a very, very sad thing [choking up].
EDWINA TAYLOR: Some people’s needs are so deep and their suffering is so deep, and its been life-long that its like putting your fist into the Grand Canyon. It doesn’t make a tremendous amount of difference. It may make a little difference, but it doesn’t make a tremendous amount of difference when the needs are life-long and we get faced with that sometimes.
EDWINA TAYLOR: I do take it home with me sometimes, yeah. Especially if we have a lot of deaths at once. It kind of piles up, and I feel real sad.
BILL MOYERS: Does that happen?
EDWINA TAYLOR: Huh-huh, yeah, it does happen occasionally or somebody I really love dies. I can’t help taking it home. When somebody like Constance Adley dies part of my heart breaks off, but it regenerates, and I mean I feel it very deeply. I’ll never, I don’t think I’ll ever get used to people dying that I care about, but it does regenerate.
CASSANDRA JACKSON: I pray a lot. I find a lot of comfort in prayer and knowing that I have done all I could for my patients. It gives me a sense of peace and relaxation.
EDWINA TAYLOR: The other thing we do though too is I don’t watch sad movies.
Dr. AMOS BAILEY: Yeah, I never watch any medical…
EDWINA TAYLOR: We never watch any movies about dying because we already gave at work –
Dr. AMOS BAILEY: That’s right. [laughter]
EDWINA TAYLOR: You know. We don’t have to do that.
BRENDA: My question continuously is who bereaves the bereaver, you know, because you – you get so involved with the families and then you go to the home for the death and then you go home alone, and then there you are – you know, and who comforts you?
EDWINA TAYLOR: I had a visit with his son last night. Pretty long visit.
Dr. AMOS BAILEY How’d that go?
EDWINA TAYLOR: Fine. I kind of explained to him how his Dad was doing and about his liver and everything. The fact that he’s so sedated because he has – his liver is not doing well. And I also talked to two of his church members today – his former pastor came up and asked if um, maybe we could get some more support from the church to sit with him some at home, if he does go home.
Dr. AMOS BAILEY: What was his pulse today?
RICHARD EVANS: His pulse when I felt it was sixty-six. It was actually reported earlier to be eighties, nineties.
Dr. AMOS BAILEY: So that’s actually much better.
RICHARD EVANS: Much better than yesterday.
EDWINA TAYLOR: Yeah cause it was fifty yesterday morning.
BILL MOYERS: The lessons these pioneering caregivers have learned from experience are now changing the culture of medical training. Bailey has been instrumental in establishing a new requirement for Cooper Green’s medical residents. They now must spend part of their residency on the Balm of Gilead.
Dr. AMOS BAILEY: And see now I get my triad that I love to use in palliative care: opioids, steroids, and a major tranquilizer.
BILL MOYERS: Every day Bailey gives a short class to residents about palliative care.
Dr. AMOS BAILEY Okay, now we’ve talked about the paradigm of suffering and we’ve talked about his physical plan. Emotional, spiritual and social issues. Maybe over the next couple of days we can start to address these more. you have to take people from one kind of approach to another.
EDWINA TAYLOR: Right.
Dr. AMOS BAILEY: There has to come time where sometimes you say what we’ve been doing is actually doing more harm than good and its time –
BILL MOYERS: You mean in the regular care.
Dr. AMOS BAILEY: In the regular care.
BILL MOYERS: They’re trying to prolong life.
Dr. AMOS BAILEY: Right.
EDWINA TAYLOR: Right.
Dr. AMOS BAILEY: People died in the Intensive Care Unit and the you know the goal was to keep their blood pressure up not to keep their pain under control. Their goal was to keep the oxygen flowing in and out, not to allow their family to be around them at the very end.
EDWINA TAYLOR: A lot of doctors can’t admit that the patient is going to die, because they see it as failure. They just can’t help but feel it’s a failure.
BILL MOYERS: I understand that.
EDWINA TAYLOR: I can too, you know cause doctors are trained in cure, and so it’s a different orientation for them.
Dr. AMOS BAILEY: What I want to see happen is the same principles of helping people feel better at end of life and treating the suffering, the whole person, the emotional and the spiritual and social side, I want to see that infused into regular medical care. and that’s why you know we talked about putting, you know doing the pain score in the regular part of the hospital. You know that its not just, not just because you’ve got cancer, and you’re dying that you get excellent pain control. What about the guy that broke his leg? Well, why can’t he have excellent pain control too?
BILL MOYERS: Have any of you had any experience with death and dying before you became residents here?
LATONYA BROWN: No, not at all.
BILL MOYERS: This was your first time?
LATONYA BROWN: Absolutely
BILL MOYERS: What did you think when you arrived on the unit?
KATE FLANAGAN: Um, I guess kind of vastly out of my realm of experience because we don’t – we are not really taught to address such issues as death and dying in medical school. We certainly received very little exposure to it during medical school. And it’s not
BILL MOYERS: Is that right?
KATE FLANAGAN: it’s really not discussed.
BILL MOYERS: No course in death and dying?
KATE FLANAGAN: No.
BILL MOYERS: Or how to care for the dying?
KATE FLANAGAN: Some in medical ethics classes, but generally just we don’t have that kind of exposure clinically.
LATONYA BROWN: Bailey to me is just amazing. But he also teaches you – because we’re kind, we’re just driven. We’re aggressive naturally. We are taught to just go out and kind of take care of this problem. And he kind of teaches you that, you know, it’s very therapeutic sometimes not to do anything. You know, it’s very therapeutic to just sit and listen. And sometimes that’s all people need.
BILL MOYERS: Are you able to talk to them about dying?
GRACE JENQ: Um, I’m still not totally comfortable, but I don’t think you can be with just three years of experience as a resident and it comes with experience, talking with people like Bailey who have years and years of experience.
LATONYA BROWN: You recognize it’s okay, it’s really OK to be a doctor and to be human. It’s OK to cry at a patient’s bedside when they cry and I certainly did do that on a number of occasions. It’s okay to say I don’t know why this is happening, you know. Certainly we will do everything we can to make it be comfortable. But I don’t know why. And generally that’s not something medical school teaches you to do.
Dr. AMOS BAILEY: How have you been doing today, Mr. McClam?
NATE MCCLAM: Still around.
Dr. AMOS BAILEY: Still around. That’s… [laugh]
RICHARD EVANS: Still kicking so he just said.
Dr. AMOS BAILEY: That’s a good thing, don’t you think?
BILL MOYERS: Dr Bailey what’s …
Dr. AMOS BAILEY: Why is he here?
BILL MOYERS: Yeah, what’s the prognosis?
Dr. AMOS BAILEY: Well, he has lung cancer that’s metastatic to his brain – when he had some radiation therapy and we tried to let him go home to stay with his grandmother who raised him from the time he was two. She’s eight-eight and actually very frail and it didn’t work out. He was home for less than twenty-four hours and he had to come back because he can’t get up to the bathroom, he can’t get up to the chair by himself. He’s really very limited in what he can do.
KATE FLANAGAN: Has your grandmother been to see you recently?
NATE MCCLAM: Yes, I see her now and then.
KATE FLANAGAN: Every now and then? How about your band members, they been by recently?
NATE MCCLAM: Yeah they come by sometimes.
KATE FLANAGAN: Ah-huh. Mr. McClam is a trombone player. And he has a picture of his band at bedside and he’s got these electric red trousers on and he’s smiling and for me when I saw that picture, it was a moment of this is a person who had a previous life and I wish I had known him before he became so debilitated.
BILL MOYERS: It’s not pretty looking at a dying person.
KATE FLANAGAN: No, but I think you get to the point where you have a relationship with them and you just – you don’t – when I see Mr. McClam who is cachexic and who is dying –
BILL MOYERS: Which means –
KATE FLANAGAN: Um. He’s wasted. He’s got just diffuse wasting from his disease, it’s sadden. It definitely saddens me but I don’t see that as much as I first did when I first met him and at first he was, um – he was not in control of any of his bodily functions; he was shaking; he was very unsteady on his feet and I was – I was overwhelmed and terrified by him because I had no idea, even if he weighs maybe 95 pounds at most I didn’t know what to do with him, and so I basically I called Bailey and we eventually through some very minor things got him more comfortable, got him to feel like he was controlling his bodily functions, his body, um better than he was before.
Dr. AMOS BAILEY Today’s the day that he’s supposed to have his disability hearing and if he gets disability then it will be possible to consider finding a long term placement for him. But right now he doesn’t have insurance and he hasn’t been approved for social security disability yet and so he can’t get that, he can’t get Medicaid – he basically is boxed out of all kinds of resources.
It easily takes from the time people stop working until they get their disability – four months. We’re only half way through – and we have a lot of people end up just staying here indefinitely because before that disability comes through –
RICHARD EVANS: Nothing can be done. No other arrangements can be made.
Dr. AMOS BAILEY: Right and they have gotten worse during that time and then they can’t go home.
NATE MCCLAM: I’m hoping that my case isn’t like that.
Dr. AMOS BAILEY: We do too. And we gave – we’ve sent all of the paperwork in, but you know the government works slowly. It just takes time.
BILL MOYERS: While the government took its time, Nate McClam’s grandmother insisted on caring for him again at home. Nate was able to spend a couple of months with her before another crisis sent him back to the Balm of Gilead. The search for a place for these patients to live out their last days is a constant struggle for bailey’s team. Patients may have no full-time caregiver in the home or their loved ones may not be capable of taking care of their needs. Bailey’s team must then look for an alternative. One option is a nursing home.
Dr. AMOS BAILEY: Well Mr. Smith, I’m going out to Ketona Nursing Home today and I’m going to look for a place for you. I talked to your family about it the other day.
Mr. Smith is a patient that we actually got from the Intensive Care Unit about a week ago and he has had a long history of heart disease.
EDWINA TAYLOR: Alright, lean forward.
Dr. AMOS BAILEY: Probably this is the plateau. This is as good as it will get for him. He has a wife and a daughter and he’s a very large man, and they cannot physically manage to pick him up and move him like he will need to be. And so we are investigating having him go to the nursing home – because it’s not going to be feasible for him to return to his own family’s home.
BILL MOYERS: What about his staying here?
Dr. AMOS BAILEY: Well, the problem with staying here is that we’re not licensed as an inpatient hospice.
BILL MOYERS: Which means that if he stays here, you wouldn’t get reimbursed.
Dr. AMOS BAILEY: That’s right.
BILL MOYERS Is he insured?
Dr. AMOS BAILEY Um, he has no insurance. He could get Medicaid if he goes to the nursing home.
BILL MOYERS But right now the costs are being borne by the public?
Dr. AMOS BAILEY That’s right. And he is the responsibility of the public as a whole for his care. I mean we are together responsible for each other. I mean, that is how the social contract works, I think.
BILL MOYERS: It’s moving day on the Balm of Gilead. Bailey’s team has scrambled to find a home for Lois Johnson who is alienated from her family and has no other place to go. Bailey has arranged for her to stay at Ms. Hill’s boarding home. Sandra Arnold will be her hospice nurse there.
LOIS JOHNSON: I won’t be so stiff and I hate to leave you all.
EDWINA TAYLOR: She’s been estranged from her Mom for a long time because she, uh, apparently was put in a mental institution when she was sixteen and was in and out of mental institutions, uh, for the next 30 years. And the past several years she’s lived with her mom, but they’ve had, um, a lot of emotional strain between them. So Lois made it clear to us before she left that she really didn’t want her mom to know where she was going.
LOIS JOHNSON: And do you know I was homeless?
SANDRA ARNOLD: I know you were homeless, yes, honey.
LOIS JOHNSON: And it hurt me so bad, you know, it just really did.
SANDRA ARNOLD: But you know we’re going to –
LOIS JOHNSON: I never thought my mother would do me like that.
SANDRA ARNOLD: We’re going to take good care of you, and you’re not leaving me. I’m going with you.
LOIS JOHNSON: Well, that’s good.
SANDRA ARNOLD: Yeah, I’m going to go with you and of course I’ll be your nurse. I’ll be coming out to see you.
LOIS JOHNSON: Okay.
SANDRA ARNOLD: Making visits and – and supplying the stuff that you need and everything. But you know you’re not going to be homeless anymore. Don’t cry. You got tears rolling down your face, honey. Everything is going to be okay. It’s gonna be alright. We’re going to take very good care of you.
BARBARA SUNDAY: Okay doll. Sit up here for me and let me show you what all this stuff is, okay? Now Sandra is gonna help you with your medicines to get everything, you know, set up the way that you need to take it, but I’ve written some notes on here, okay? And I’m going to show you what each of these is and when you need to take em, okay?
LOIS JOHNSON: You all wanted me do it, it would be messed up.
SANDRA ARNOLD: I’ll set it up in a pillbox for you.
BARBARA SUNDAY: But I just need to let know –
SANDRA ARNOLD: Yeah, we’ll set it up in a pillbox.
BARBARA SUNDAY: Okay, you’ve got potassium which you take two in the morning time, at about 9:00 in the morning, okay. This is your cough syrup, which you take in the morning and then as you need it through the day, every eight hours, okay. This is your pain medicine, the pills that I give you and you take one at 6:00 in the morning, one at 2:00 in the afternoon and one in the evening time before you go to bed. Then you’ve got your Klonopin which is your nerve pill that you get every morning and every night. And this is Cynacart this is your laxative, okay?
BILL MOYERS: More than half the shift at the Balm of Gilead sees Ms. Johnson and her worldly possessions off to her new home.
SANDRA ARNOLD: It’s really nice. So it’s been awhile since you’ve been outside.
BILL MOYERS: Boarding Homes are a relatively new experiment for the Balm of Gilead. Lois Johnson is only the third patient to be sent to Ms. Hill’s.
Dr. AMOS BAILEY: It’s a little tricky because you really are dependent on having a primary caregiver and when they really, really get sick at the end, the person taking care of them is not their family, it’s the boarding home owner and he or she, rightfully, may feel like, you know, I signed up to provide a bed and three square meals a day, not this intensive kind of care. So, someone in a boarding home is much more likely to end up coming back to the Balm of Gilead to die. I’ve told boarding home people that if you feel like you cannot handle it anymore, then I will take them back into the hospital, but try, for me.
SANDRA ARNOLD: Right this way honey, okay. Just – just rest there for just a minute, okay. We took Ms. Lois out to the, uh, boarding home. Got her set up, uh, there. I ordered her some oxygen and a wheelchair to be delivered to the boarding home today. I did set her medications up in one of the medi-planners. Cause she was very concerned about her medicines when she left here.
Dr. AMOS BAILEY: Right. Right.
SANDRA ARNOLD: That she wouldn’t get them on time.
Dr. AMOS BAILEY: Right.
SANDRA ARNOLD: We’re also going to get, uh, Anita to see her, uh, three times a week for personal care, her bath and her personal needs. Also one of the ministers will be visiting her, along with uh, Jane and myself.
Dr. AMOS BAILEY: Good.
MS. HILL: What do you think you want for lunch?
LOIS JOHNSON: Well, just whatever.
MS. HILL: Soup and sandwiches?
LOIS JOHNSON: Just whatever.
MS. HILL: (laughing) No now, you got to – I want to fix something that you’re going to eat, I don’t want to waste it.
Dr. AMOS BAILEY Ms. Hill, you know, became her primary care giver and actually did more than we really had kind of, uh, uh made an agreement or contract with her to do.
EDWINA TAYLOR: Right.
Dr. AMOS BAILEY: Uh, and Ms. Johnson enjoyed living there, she had her friends visiting her there, she wasn’t bothered by her family which she was estranged from, um and she – she got to leave the hospital and so, while it didn’t last as long as we all perhaps had hoped that it might last, I think it was a success.
LOIS JOHNSON: I – I was – I was homeless.
MS. HILL: Bless your heart. Well I’m glad you’re here.
LOIS JOHNSON: And I’m glad to be here.
MS. HILL: You can say you got a home now.
LOIS JOHNSON: Mmm-hmm
LOIS JOHNSON: I didn’t know people cared so much.
MS. HILL: Mmm-hmm, well you see.
LOIS JOHNSON: You know that, I really didn’t.
MS. HILL: But we do.
LOIS JOHNSON: Yeah.
SANDRA ARNOLD: Ms. Johnson was there for um several weeks, but now she did come back into the hospital, back to the Balm of Gilead, and she passed at the Balm of Gilead.
BILL MOYERS: Peacefully?
SANDRA ARNOLD: Peacefully, yes.
BILL MOYERS: The majority of people who die in Birmingham, as in the rest of the nation, are seniors. They’re in their seventies and eighties, which means they will die in a Medicare-funded health system, a system under stress.
SANDRA ARNOLD: Okay, do you have your Medicare card with you?
JOHN REAGAN: It’s in my billfold. It’s down in the office.
SANDRA ARNOLD: In the office.
SANDRA ARNOLD: Cause we’re going to need to get that back, and tomorrow when I come to see you at home, what I’m going to need to do is make sure that they gave me the right number.
BILL MOYERS (V/O) John Reagan is eighty-five and dying from prostate cancer. He’s preparing to leave the Balm of Gilead today and return home with hospice, but with no full-time family caregiver.
SANDRA ARNOLD: There’s also a patient identification card that identifies you as a Birmingham Area Hospice patient.
EDWINA TAYLOR: Mr. Reagan. Brenda has been to see him.
EDWINA TAYLOR: Okay. And we’re concerned that he might get mixed up on taking his medicines.
Dr. AMOS BAILEY: I’m concerned about that too. [laughter]
EDWINA TAYLOR: We’re all concerned.
Dr. AMOS BAILEY: We’re all concerned about that. That’s why none of us –
EDWINA TAYLOR: … taking care of himself at home. We’re not excited about him going home.
Dr. AMOS BAILEY: No, we’re not excited about this setup, but he’s insistent so…
EDWINA TAYLOR: Yeah.
Dr. AMOS BAILEY: I know.
EDWINA TAYLOR: The friends – the friends and not-related loved ones taking care of him is making me nervous. Um, okay, Brenda’s going to see him this afternoon.
Dr. AMOS BAILEY: Good.
EDWINA TAYLOR: She came today.
Dr. AMOS BAILEY: So she’s going to set up his meds in a –
EDWINA TAYLOR: And she’s going to set up his meds in a med-minder thing.
Dr. AMOS BAILEY: Good.
EDWINA TAYLOR: So he can take them daily and um, I’m going to page her right after lunch when he goes home, so she’ll know what time to go.
Dr. AMOS BAILEY Right.
SANDRA ARNOLD: She’ll put this in your bag with your medicines and things so that it will go home with you.
JOHN REAGAN: Well, that would be fine. Just so long as they don’t put me in there. [laughter]
SANDRA ARNOLD: No, we’re not going to put you in there.
EDWINA TAYLOR: We won’t, unless you start causing trouble.[laughs]
SANDRA ARNOLD: And I will see you at home this afternoon. And, we try to honor people’s wishes as much as we can, so we tried to make all this work. Uh, communicating with neighbors and friends and church members, but when it came down to it, there were just too many holes in the fabric.
Dr. AMOS BAILEY: He couldn’t manage to take his medicine the way he was supposed to. I mean, we set it up in boxes and things like that and that’s what a primary caregiver would have done, you know, would have made sure that he took this when he was supposed to and this when he was supposed to and he just wasn’t functional enough at eighty-five, with his kind of anxietal symptoms, to be able to do that correctly. And then it was a vicious cycle and it landed him in a nursing home.
JOHN REAGAN: I worked hard all my life.
BILL MOYERS: Because Balm of Gilead had no contract with nursing homes, bailey could no longer supervise Reagan’s care, so that care was disrupted at the most critical time of his life. When we went to the nursing home to visit him, he told us he had rarely been out of bed in a month. The day we arrived with cameras, he was treated to a physical therapy session.
JOHN REAGAN: Getting a lot of exercise this morning for what I’ve been doing and that’s why I think that’s why my foot swelled bad.
PHYSICAL THERAPIST: Did Daryl work you out?
JOHN REAGAN: No, not yet.
PHYSICAL THERAPIST: No!
JOHN REAGAN: I just walk around myself, but I don’t want to overdo it. ‘Cause I know that can hurt you as bad as not doing anything. I’ve been here over three weeks now, nearly four weeks. And that’s the first time I’ve been on my foot. It’s mostly just sitting in the bed and – and going to lunch and all that and going for a check up and different things like that. It’s not exactly fun, but I’ve had worse things happen to me, so I’m not going to worry about it.
Dr. AMOS BAILEY: If we’re not involved, then the work that we’ve done can sometimes get undone. Um, you know, the plans that were made get forgotten and so it’s very important to, I think, have um, continuity.
BILL MOYERS: To provide that continuity of care for patients like John Reagan, Bailey has been battling to get Birmingham hospice into local nursing homes. After a two-year effort, he finally signed a contract with Jefferson County nursing home, including classes for the staff on palliative care.
EDWINA TAYLOR: But again dehydration may be protective. This is one of Bailey’s favorite things to talk about cause it’s always a struggle of mine to know whether to give the person something to drink or not.
Dr. AMOS BAILEY The nursing home will be the primary caregiver so if people are going to die in the nursing home which we know they’re going to, it happens, you need to be able to help the staff who are acting like their family be prepared. Just like the people that we prepare at home.
EDWINA TAYLOR: You know and again like we know – it goes without saying – go by what the patient wants.
BILL MOYERS: In creating this web of care between home, hospital and nursing home, Bailey has a formidable ally on the national scene, Dr. Joanne Lynn. She has come to learn about Bailey’s experience here at Jefferson county nursing home.
Dr. AMOS BAILEY: Hello Ms. James. This is Dr. Lynn who is a friend of mine from Washington, D.C. who’s coming to visit people with me today. Okay?
DR. JOANNE LYNN: Hello. Good to meet you.
Dr. AMOS BAILEY: It’s good to see you.
DR. JOANNE LYNN: Good to see ya.
Dr. AMOS BAILEY: [laughing] I know that you have a hard time talking, but I also know you understand, you know, everything that we say. Didn’t you used to work here as an aide – a nurse? That’s right. How are you feeling today?
Dr. AMOS BAILEY: Not good.
MS. ATHA JAMES: I’m – I’m … kind of low…
DR. JOANNE LYNN: Kind of low.
Dr. AMOS BAILEY: Kind of low. A little blue.
Dr. AMOS BAILEY: Ms. James had a stroke and after she had the stroke she wasn’t able to care for herself and she was living alone and her son is employed and the daughter-in-law was ill, apparently. Any case, she eventually came into the nursing home. She’s left with a very severe deficit, obviously and was very depressed.
DR. JOANNE LYNN: But very alert mentally.
Dr. AMOS BAILEY: Yes.
DR. JOANNE LYNN: Inside there…
Dr. AMOS BAILEY: Right.
SANDRA ARNOLD: Are you unhappy with your room?
Ms. JAMES: Uh uh.
SANDRA ARNOLD: No, it’s fine? What about your roommate? That’s okay too. No? Are you –
Ms. JAMES: I want….(points up to the ceiling)
Dr. AMOS BAILEY: You want to go on somewhere?
Ms. JAMES: I want to go home.
Dr. AMOS BAILEY: You want to go home. She was very depressed and uh, basically wasn’t eating, and having frequent hospitalizations because of this progressive deterioration. And so, they asked us to start seeing her, to manage these symptoms.
DR. JOANNE LYNN: Being in hospice?
Dr. AMOS BAILEY: Under hospice. But, she’s much more animated. I mean, this – this is week four.
SANDRA ARNOLD: She’s much better now.
BILL MOYERS (V/O) : Atha James, like many elderly patients, suffers from numerous complaints and disorders, and like the others, her dying time may be prolonged. But Medicare requires a six month terminal diagnosis for hospice care, so if Atha James takes too long to die, she may have to be discharged from bailey’s care.
DR. JOANNE LYNN: These are exactly the sort of patients who need you the most…
Dr. AMOS BAILEY: Right.
DR. JOANNE LYNN: but if you’re successful, they will fail to die and they’ll have to leave you. And, that undoubtedly will not be good for her emotional well being. If you talk to anybody for ten minutes on this issue, they’ve got to tell you their story. Well, anybody over 40.
BILL MOYERS: From her base in the nation’s capital, Dr. Lynn is trying to change our health system to meet the needs of the dying and their caregivers.
DR. JOANNE LYNN: It isn’t just a private calamity. It’s happening to so many people. It’s a terrible thing that people can’t count on the care system as they come to the end of life.
BILL MOYERS: Joanne Lynn is a physician, professor, and writer – and director of the center to improve care of the dying.
DR. JOANNE LYNN: The system we’ve got reflects where we put the money.
BILL MOYERS: Mmm.
DR. JOANNE LYNN: And, we have put money in transplants and we have put money in developing the very best of drugs and…
BILL MOYERS: But we haven’t put money in end of life care?
DR. JOANNE LYNN: No, in fact, we have quite adverse incentives. We have built into the care system incentives so that neither managed care organizations working with Medicare nor fee-for-service providers working with Medicare can put in place good comprehensive services. There’s no incentive in the current care system for continuity. If you’ve got terrible heart disease and you’re going to have it all the rest of your days, one of the obvious things you need is a doctor who’s going to stay with you all the rest of those days. And yet, every medical care system will make more money in Medicare if they switch you around, do procedures, put you in the hospital, nobody really pays attention to what’s really happening in your life.
BILL MOYERS: Because they only get paid for procedures and mostly for procedures done in institutions. Right?
DR. JOANNE LYNN: Right. We think of change happening at three levels. We think of change happening in the way that doctors and nurses relate to patients and families. A second level is, the very local care system needs to do a better job. And then at the third level, we need to change public policy.
DR. JOANNE LYNN: We end up taking care of people who have accumulated serious illness. In a whole hodge-podge of programs that were never really designed around doing that well or officially. How is it possible that it is easier to get a hip replaced than it is to get a nurse visit on the weekend? Why is it you can’t get a home health aide to help you in a piece of time when you, the caregiver, is sick? Because we never built that into our care system. Why is it that caregivers lose their health insurance? Because we never paid attention to it.
CASSANDRA JACKSON: Good morning, Brenda.
BRENDA WILSON: Good morning.
CASSANDRA JACKSON: How you doing today?
BRENDA WILSON: I’m fine.
CASSANDRA JACKSON: Good. How is Ms. Scott doing today?
MS. BEATRICE SCOTT: I’m well. I’m doing pretty good.
CASSANDRA JACKSON: Doin’ pretty good?
MS. BEATRICE SCOTT: Uh-huh.
BILL MOYERS: Bea Scott is being cared for by her children, Brenda and Frank, with the help of Birmingham Hospice.
BRENDA WILSON: She just had her bath and she usually be asleep, but she holding on right now.
CASSANDRA JACKSON: Okay.
BRENDA WILSON: Okay.
BILL MOYERS: At seventy-seven, Ms. Scott has had strokes, kidney failure, and diabetes that lead to amputation of both legs. Yet her children are determined to care for their mother in her own apartment.
CASSANDRA JACKSON: And the last morphine she got was on yesterday when she complained of chest pain.
BRENDA WILSON: Yeah. Frank said he gave her some – Frank, did you give her some last night?
FRANK SCOTT: Yes.
BRENDA WILSON: : Okay.
BILL MOYERS: Although Medicare covers Ms. Scott’s hospice expenses, it doesn’t help her children who are making huge sacrifices to care for their mother around the clock.
Dr. AMOS BAILEY The strain on this family has got to be really quite severe because she can’t be left alone and they don’t leave her alone, and they don’t live there, and they’re not allowed to live there. So there’s someone from her family coming for eight to twelve hours every day and then they’re relieved by someone else who spends the next eight to twelve hours there. And they’ve done a wonderful, beautiful job for her.
CASSANDRA JACKSON: Frank, you gonna feed her now?
FRANK SCOTT: Yes, I can.
CASSANDRA JACKSON: Okay.
FRANK SCOTT: It’s about ready.
CASSANDRA JACKSON: Okay.
BRENDA WILSON: She was doing pretty good up until November the 11th. I called her from work and she could barely talk. I said, well, I’ll see you in a few minutes. So I got off work on the 11th of November about 12 o’clock and I have not been back.
BILL MOYERS: Brenda took off eight months to care for her mother. During that time she lost her job, her home, her car, and her health insurance.
BRENDA WILSON: It’s hard, but by the grace of the good lord and my daughters, my brothers, I been able to maintain. I promised my mother that I would not put her in a nursing home. Whatever I had to do to take care of her would be done. And that’s why she’s right where she is today. I wouldn’t change nothing. I wouldn’t change a thing.
FRANK SCOTT: …tear again…tear again around your eye.
CASSANDRA JACKSON: Are you crying Ms. Scott? Eyes just watering.
MS. BEATRICE SCOTT: I don’t cry, I don’t worry about nothing. I told them don’t worry about me too.
CASSANDRA JACKSON: You don’t want them worrying about you?
MS. BEATRICE SCOTT: Uh-uh.
CASSANDRA JACKSON: Ms. Scott had a very good, peaceful death, but her daughter Brenda had stopped working.
BILL MOYERS: And this wiped her our financially?
CASSANDRA JACKSON: This wiped her out. So after her mom’s death she went back to Detroit to live with her daughter. A lot of our patients don’t have anything before they get sick. After they get sick, it wipes the caregiver and the patient.
DR. JOANNE LYNN: Caregivers, family caregivers need an awful lot of help from their community. Right now we mostly sort of see it as – you know, your problem if you’re taking care of your mother. But what if we instead said well that’s rather like the National Guard – you know, it’s sort of something you’re doing for your family, but on behalf of the whole community, and we all ought to rally to help you out with it.
BILL MOYERS: But we are, in fact, talking about population that is largely very old, very poor, and very female. And that is not a voting constituency and those are not the people who command the attention of the power brokers on Capitol Hill. Right?
DR. JOANNE LYNN: Well, when you say people are largely poor, the image that people bring to mind is people who have been poor all their life. And, what we need to come to recognize is that these are people who are newly poor. They mostly lived their lives in middle class and they’ve become poor because their husband died and the pension went and then they got ill and they used up their savings and now they’re the poorest they’ve been since they were married. And all –
BILL MOYERS: Because of health care costs?
DR. JOANNE LYNN: Well health care costs and the cost of living while disabled.
BILL MOYERS: So, when we talk about dying on our terms, we’re not just talking about the individual autonomy of a – of a single death, we’re talking about how the whole community acts and behaves and cares for all of us who are dying.
DR. JOANNE LYNN: Exactly. We just can’t really just walk away from it. More and more people are seeing what their parents are going through as something they’ve got to speak up about. And, not only for their parents, but for themselves when they get there.
MS. FLORINE HUFF: That’s my sister, or is that me? That’s me. That’s me right there. That’s the one in New York.
BILL MOYERS: At 89, Florine Huff has been taking care of her ailing sister for several years. What’s happening now puts both of them in jeopardy.
MS. FLORINE HUFF: This is the one up there sick now, Portia. That’s her.
BILL MOYERS: Portia Boyd, her sister, is 87. Ms. Huff is growing too fragile to look after her.
MS. FLORINE HUFF: …everybody’s at home around here. We don’t have any company, so they see it as is…
Dr. AMOS BAILEY: Hi Ms. Boyd.
MS. FLORINE HUFF: …catch what you can.
Dr. AMOS BAILEY: I’m doing really well.
MS. FLORINE HUFF: …take that dress off and then I still left it on the bed…
Dr. AMOS BAILEY: I have some – I have a friend to visit with you today from Washington. This is Dr. Lynn, Joanne Lynn. This is Ms. Boyd.
PORTIA BOYD: Hi.
DR. JOANNE LYNN: Hi.
PORTIA BOYD: Nice to meet ya. Sit down – you sit down too.
Dr. AMOS BAILEY: Did you enjoy your um, barbecue?
PORTIA BOYD: Oh, I forgot to tell you! Did I? It was – it was delicious!
Dr. AMOS BAILEY: Good.
PORTIA BOYD: Uh hmm and peas…can you get.
Dr. AMOS BAILEY: Yeah, I know.
PORTIA BOYD: That was so good. I enjoyed it.
Dr. AMOS BAILEY: Great.
BILL MOYERS: When Ms. Boyd was diagnosed with lung cancer, she moved from Pennsylvania to Birmingham to be cared for by her sister.
DR. JOANNE LYNN: Good thing you have each other.
PORTIA BOYD: My sister’s taking care of me. I give her a lot – all the credit – not all, but most credit because she’s really good to me, very good. If it hadn’t been for her, I don’t know where I would be, but she’s taken very good care of me.
The two sisters hired Ms. Susie Davis to help them with their meals and medication. This is her first week on the job. Medicare doesn’t cover such an expense and it’s not clear how long they can afford her help.
SUSIE DAVIS: Father God in the mighty name of Jesus Lord we thank you for this food that we are about to receive for the nourishment of our bodies in Jesus’ name. Amen.
MS. FLORINE HUFF: Amen.
SUSIE DAVIS: Can I put some jelly on your bread?
Dr. AMOS BAILEY: They’ve been able to manage for 2½ years, but Ms. Boyd is not as able to get around as she was and Ms. Huff I think is developing some dementia and she was repeating herself, forgetting what she said, was not handling Mrs. Boyd’s medicines very well, even though they’re very simple, and they weren’t even able to really handle for instance, cooking meals and preparing food in the house. So we all were concerned that they might both end up needing to go into a nursing home situation, which neither one of them want. They really need to be together.
DR. JOANNE LYNN: Isn’t it amazing how in a flash both people could be in a nursing home and Medicaid would pick it up, but you have to string it all together…
Dr. AMOS BAILEY: Right.
DR. JOANNE LYNN: to make it work to stay at home.
Dr. AMOS BAILEY: Right. Ms. Boyd would go – could go into a nursing home more easily since she doesn’t really have that many possessions. This home is owned by Ms. Huff. If Ms. Huff had to go into a nursing home, then her assets would have to be spent down. In this state you have to spend down to $1,500. So they’d have to sell this home.
DR. JOANNE LYNN: Where are we going to have people live who are terribly frail and disabled? Are we going to really make it possible for their children to all take them in? Are we gonna arrange it so they all have children? Many of them have outlived their children. I’ve got lots of 90-plus year-old old ladies whose children are already gone. Who is going to take care of them if we aren’t going to build nursing homes capable of taking care of them?
BILL MOYERS: You’ve said, Dr. Lynn, that people should be in special, customized programs that they can count on, you know, something like an “Alzheimer’s End of Life Care”. But wouldn’t that cost a lot of money to tailor our health care to meet the needs of a particular dying person?
DR. JOANNE LYNN: We’re already spending the money. We do not put patients like this on the street. We end up spending it. We end up spending it out of Medicare or Medicaid or private resources. It’s more a matter that if you could pull it together and make it make sense. Have the right services. I can get any patient a trip to the ICU, if they need it. Can I get a patient a meal delivered on a weekend? Can I get a patient narcotics so that – if they don’t have the money to pay for it? No. I mean these are just gross, nonfunctioning arrangements in our care system.
BILL MOYERS: Well, why don’t we change it? I mean the dying aren’t gonna change this. It’s too late for them to have an impact on the system.
DR. JOANNE LYNN: Oh, let’s do! I mean, let’s do change it! We the people – own the care system…
BILL MOYERS: You would…
DR. JOANNE LYNN: that we’re now very unhappy with. So, we could fix it.
Dr. AMOS BAILEY: Did you sleep okay last night?
DR. JOANNE LYNN:When you’re talking about major social change, there’s so many obstacles and the biggest obstacle is that we’re used to how we’ve been doing it. We need concrete services. We need doctors who know how to provide good pain relief, nurses who are really terrific at being able to manage patients who are becoming increasingly bed bound. We need to change how we pay for care, so that it’s possible to make a living doing it right. We can get an ambulance out. We can transport the person. We can put them in the ICU. We know how to do those things. We don’t know as well, how to sit down and talk with a person about how they want the end of life to be lived, we haven’t done it as much, we haven’t put it on TV, we haven’t talked about it. We need as a culture, to learn a lot about how to do this well. And it’s not right off the shelf.
Dr. AMOS BAILEY: You have one time to get it right. One opportunity to get dying right, so you have all these bad experiences that people have had dying in the last thirty, forty, fifty years and all the culture sees that. I mean it’s always this horrible thing that happened, and if you can change that by helping Mrs. Adley’s family or Mr. Smith’s family have, not a happy experience, but not the horrible experience they thought it was going to be, then they’re going to go to their friends and their family and say you know it doesn’t have to be the way its happening to your family member or, later on, if they’re in that kind of situation they’re going to agitate to say to the doctor, why are you doing this to me? Why can’t I have hospice or why I can’t you give me enough pain medication to control my symptoms, and what about my emotional, spiritual, and social problems? What are you going to do about it? I think that you’ll build a culture of consumer demand for it.
BILL MOYERS: But don’t you feel you’re in an uphill fight in a culture that wants to deny death, that doesn’t want to look at it?
Dr. AMOS BAILEY: Yes, I do feel it’s an uphill battle. I’m amazed though at how this happened. I mean a year ago this was an abandoned part of the hospital. Now it’s a very alive part of the hospital. It’s kind of a strange word to use about the part of the hospital where people are coming to die, but it’s very alive.
BILL MOYERS: How are we going to change our culture?
EDWINA TAYLOR: One starfish at a time. I know you know that story.
BILL MOYERS: No.
EDWINA TAYLOR: Well, person is walking along the beach and he sees the little boy, and there are lots of starfish that have washed up, and the little boy is throwing the starfish back in the ocean, and the – the man says, ‘Son, why are you doing that? It’s not going to make a big difference.’ and the little boy throws one more starfish in the ocean and he says, ‘To that one it will.’ And that’s how we’re going to change the culture is one person at a time. One dying experience at a time. One family at a time.
This transcript was entered on April 21, 2015.
