Transcript for the Piece Audio version of HEART-to-HEART Pgm II: Children Sometimes Die
HEART-to-HEART Pgm II: Children Sometimes Die
" Narration 1: HEART-TO-HEART: CARING FOR THE DYING. FROM PUBLIC RADIO INTERNATIONAL. THIS PROGRAM -- CHILDREN SOMETIMES DIE -- LOOKS AT THE ULTIMATE TRAGEDY THAT A FAMILY CAN FACE AND THE SUPPORT THEY NEED TO GET THROUGH IT.
?" MUSIC: Theme Music IN
(Up in the clear. Then fade down and weave through Introduction.)
11" Brittney: When I, like, walk around and stuff, I don’t think of myself as being someone with a medical problem or anything. I just walk around like a normal person. (Chuckle.)
20" Narration 2: WE EXPECT THAT CHILDREN WILL GET SICK FROM TIME TO TIME. BUT WE DON'T EXPECT THEM TO DIE. THE VERY IDEA OF A CHILD DYING IS SO FILLED WITH EMOTION AND PAIN THAT WE DON'T EVEN WANT TO THINK ABOUT IT..... HOWEVER, CHILDREN SOMETIMES DO DIE. AND -- AS A SOCIETY -- WE NEED TO FIGURE OUT HOW TO HELP THEM ON THEIR JOURNEY.
MUSIC: Up and Out
8" Narration 3: BRITTNEY IS A CHILD WHO MAY DIE YOUNG. SHE LIVES IN SEATTLE WITH HER LEGAL GUARDIAN -- WHOM SHE CALLS HER "MOM" -- DAWN ENGLISH.
3" Dawn: Brittney is thirteen and has cystic fibrosis.
16" Brittney: It’s a lung disease which uh causes your lungs to make thicker mucus. And uh...and it grows bacteria and stuff. And it also affects your digestive systems.
5" Narration 4: BRITTNEY'S BEEN COUGHING UP A LOT OF BLOOD RECENTLY. SHE'S JUST BACK FROM A STAY AT THE HOSPITAL.
22" Dawn: In Brittney’s case uh she has permanent lung damage. She’s had one lobe removed, and now is...is needing fairly frequent hospitalizations to keep her marginally healthy. And we’re in the process of getting her ready to go to California to Stanford to be evaluated for being put on the lung transplant list.
30" Brittney: I hate the hospital. That’s the worst place ever. Cause it's boring. And I hate it. (giggle)
Dawn: And besides, those boys are going to get taken if she's not there to guard them. Or actually "That Boy".
Brother: She has a crush.
Brittney: He's really cute still.
Brother: He had braces.
Brittney: So he's still cute. He’s funny. Yeah, and I just like him.
Brother: She walks like a freaky boy.
Brittney: No I don't
Brother: Yeah you do!
0" FX: Lamontay's Breathing. [46" total]
Use under Lamontay's scenes -- here and throughout show.
14" Narration 5: DAWN IS ALSO LEGAL GUARDIAN FOR LAMONTAY, WHO WAS BORN WITH MULTIPLE PROBLEMS, INCLUDING CEREBRAL ((SAYR'-AH-BRAHL)) PALSY -- OR CP. LEMONTAY CAN'T SPEAK. BUT HIS LABORED BREATHING IS A CONSTANT PRESENCE IN THE ROOM.
9" Dawn: You gonna talk?
Tell me what's going on this morning, huh?
You kept me up a lot last night. So tell me about it.
33" Dawn: Lamontay is five and has severe CP and obstructive airway disease. His own airway collapses and he doesn't swallow and so secretions build up. Uh, Lamontay probably has the developmental age of possibly a six week old, 'cause he smiles and he coos and he laughs, but he isn’t able to sit or hold his head up very well. He can’t walk or crawl. He has...has you know probably about as severe CP as you could have.
2" Lamontay: Big breath.
4" Dawn: You got a great smile, mister. You know that? (laugh)
14" Dawn: Lamontay I think is just darling. He’s uh African American. He’s kind of on the thin side. He’s got a huge smile. Uh big brown eyes.
2" Lamontay: Big breath.
3" Dawn: Yes, nice smile.
10" Dawn: They thought I would bring him home and he would die. And we’re five years later and he’s still hanging around (laugh).... which makes us very happy.
?" MUSIC: Up in the clear, then under.
" Narration 6: BRITTNEY AND LAMONTAY LIVE IN THE SHADOW OF DEATH. THEY NEED A TREMENDOUS AMOUNT OF MEDICAL ATTENTION. THEY ALSO NEED A LOT OF LOVE AND UNDERSTANDING AND SUPPORT – IN ORDER TO FACE EACH DAY THAT THEY CONTINUE TO LIVE.
MUSIC: Music Up and Out.
" Narration 7: MOST DOCTORS HAVE NOT BEEN ABLE TO MEET THIS CHALLENGE. AND THERE ARE A LOT OF REASONS FOR THIS. FOR ONE THING, WHILE THE NUMBER OF CHILDREN WHO DIE EACH YEAR IS SMALL -- COMPARED TO THE OVERALL NUMBER OF DEATHS -- THE TRAGEDY IS ENORMOUS. AND CHILDREN ARE NOT JUST LITTLE ADULTS. THEIR SITUATION IS VERY DIFFERENT; THEIR NEEDS ARE DIFFERENT AND OUR APPROACH TO THEM MUST BE DIFFERENT AS WELL.
12" Joanne W: There are very few pediatric palliative care programs in the country right now, relative to the number of children who would benefit greatly from receiving palliative care services.
11" Javier: Hospices are primarily geared to deliver services to adults. They do take children, but their nurses and their healthcare providers, they don’t have pediatric expertise.
13" Joanne H: And it does cost more to deal with a child if it’s at the end of life. So, hospices are faced with the issue that they do not get reimbursed the amount it takes to do proper care for these children.
" Narration 8: THESE ARE THE VOICES OF THREE PHYSICIANS WHO ARE WORKING WITH DYING CHILDREN: JOANNE WOLFE, IS AT CHILDREN’S HOSPITAL IN BOSTON; DR. JAVIER ((HAH'-VEE-AYR)) KANE, WORKS AT THE SANTA ROSA CHILDREN'S CENTER IN SAN ANTONIO AND DR. JOANNE HILDEN, IS AT THE CHILDREN’S HOSPITAL IN CLEVELAND. THERE ARE JUST A HANDFUL OF DOCTORS LIKE THEM AROUND THE COUNTRY, WHO ARE TRYING TO TURN THIS PROBLEM AROUND. DR. ROSS HAYES IS ANOTHER:
29" Ross: Pediatricians in this country mostly spend their time taking care of healthy kids. You know people learn by experience. And if you don’t get experience, then you don’t learn. And also, because it’s rare we don’t have systems built up to support this aspect of pediatric care. So, insurance companies don’t understand how to deal with it and hospitals frequently are not skilled or geared toward uh taking care of dying children. Not very many people have experience with their needs.
" Narration 9: THESE DOCTORS ARE WORKING IN A NEW FIELD CALLED "PEDIATRIC PALLIATIVE CARE" WHICH RESPONDS TO THE UNIQUE NEEDS OF DYING CHILDREN – AND OF THEIR FAMILIES. DR. HAYS WORKS AT CHILDREN'S HOSPITAL IN SEATTLE WHERE BRITTNEY AND LEMONTAY ARE LUCKY TO BE PATIENTS. GERRI HAYNES IS A NURSE HERE.
Hospital Reception Area: (Start in above narration.)
0" Ambience: [7" total] Distant PA
0" Ambience: [2'13" total] Non-specific walla
19" Gerri: The children who come to our program probably will have a vastly shortened life span. And the goal of this care is to help them go through this process in the most loving way possible. And that sounds like mushy, mushy stuff. But it isn't.
34" Ross: We have become so skilled at doing certain technical things and so enamored with that, that we’ve often forgotten what it means to actually care for the patient. Not only what their medical needs are but what the needs of their families are, their spiritual, social, community needs. And really stepping back a little bit and focusing on this whole person in the context of this illness.
?" MUSIC:
2" Man: These folks are here for out-patient therapy.
11" Woman: Hello. What's her first name?
Mom: Savanah
Woman: Great. And it will be just one moment. We'll check you in shortly with one of our registrars
Mom: Thank you. Tell her "Thank you."
Girl: Thank you.
" Narration 10: ONE BIG DIFFERENCE BETWEEN CHILDREN AND ADULTS IS THAT KIDS MAY LIVE FOR YEARS WITH A TERMINALL ILLNESS. BUT, THEY NEED TO RECEIVE PALLIATIVE CARE RIGHT FROM THE MOMENT THEY ARE DIAGNOSED -- NOT JUST IN THEIR LAST DAYS. AND THIS CARE HAS TO BE HAPPEN ON ALL LEVELS: MIND, BODY AND SPIRIT. THIS TAKES A LOT OF PEOPLE WITH A LOT OF DIFFERENT OF SKILLS.
MUSIC: Out.
29" Gerri: The team could be comprised of the child’s primary physician, the child’s specialty physician or physicians. It might be the fellow in training, a resident in training. It could be clinic nurse, the school nurse, the social worker. It could be physical therapist, occupational therapist, certainly a chaplain or spiritual person if the family so chooses. Uh, child life specialist. We’ve used storytellers, a music therapist.
4" Narration 11: MANAGING PAIN AND OTHER PHYSICAL SYMPTOMS IS AT THE TOP OF THE LIST.
24" Ross: We have a very strong commitment to relieve pain and suffering. But there are some symptoms of disease that accompany end of life other than pain that can be just as distressing. Patients who have nausea that just sort of eats away at them all day long. Children often have dyspnea or shortness of breath and have talked about feeling as if they’re drowning.
30" Lamontay: (Breathing throughout scene)
Dawn: The biggest problem Lamontay has is his airway. And .......
FX: Beeping
Dawn: Oops. You're beeping.
Dawn: It's his Oxymitter. When he doesn't have enough oxygen it beeps. Pretty quick within just a few seconds it will show that he doesn't have enough oxygen. And so we either have to suction him or reposition his head.
Lamontay: Big breath
Dawn: Hi! Nice smile. Yes, you're so funny. Your so funny.
9" Narration 12: ALONG WITH CONSTANTLY WATCHING THAT LEMONTAY IS GETTING ENOUGH OXYGEN, DAWN ALSO HAS TO KEEP HIS LIMBS FLEXIBLE, BECAUSE HE CAN'T MOVE ON HIS OWN.
22" Dawn: He needs to uh have us put him through all of the motions that your body normally goes through, reaching, and turning, and scratching, and all the things that one normally does with their hands, we have to do that for him because he’s not...not capable. Uh and without that uh eventually he would just you know tighten up into a fetal position.
5" (Putting Lamontay in standing chair.) [13" total]
Dawn: You have to put yours down first. His arm's got to go under the…
10" Dawn: This is a stander which I really like because, um, he's supported in a standing position so that he winds up using muscles that he wouldn't normally use.
3" Dawn: Hi Buddy!
9" Dawn: And then on the tray in front of him, of course, are things that make a lot of noise and have lights and whistles and "The Dancing Bunny" and that kind of stuff, so we.…
15" Dawn: [23" total] Do you want to turn the Bunny on again? (Terrible "Bunny Music")
(Fade out and under next narration.)
4" Narration 13: FOR BRITTNEY, KEEPING HER LUNGS CLEAR IS PRACTICALLY A FULL-TIME JOB.
0" Ambience: Amb for Dawn and Brittney to match. (Throughout scene)
20" Dawn: Brittney is taking a, you know, whole variety of...of respiratory treatments to clear her lungs and to keep her lungs as healthy as possible. So, she does what’s called a flutter, where she blows on a little pipe that has a steel ball and it jiggles the things loose and then she coughs them up and she has to do that four times a day.
47" Brittney: This is a flutter. And I blow in like this. (blows) And it jiggles my lungs and makes me cough. (blows) (coughs!!) I have to do it 10 times. I get tired of it. (giggle.)
9" Narration 14: BUT IT'S NOT JUST ABOUT CONTROLLING PHYSICAL SYMPTOMS. FOR A CHILD WHO IS FACING DEATH, EMOTIONAL SUPPORT IS A BIG PART OF GOOD MEDICAL CARE.
?" MUSIC: IN
0" Ambience: Amb for Dawn and Brittney to match. (Throughout scene)
7" Brittney: I’m afraid of dying. That’s my biggest fear. It's just.... scary.
8" Dawn: She knows people with cystic fibrosis die. And Brittney knows that uh she has severe lung disease and she’s panicked about that.
11" Brittney: Because I don’t want to like not be able to not breathe and stuff. That would be scary. But my Mom, she just comforts me, and we can talk to each other. When I’m afraid, she just helps me.
14" Dawn: You know it’s really difficult talking to a kid about dying. You know how do you say, "Well, you know when you die, this is the way it will be" ..... or whatever? So, I talked to the psychiatrist and she said, you know that we should actually talk about the process of...of dying.
11" Brittney: My mom said, if I’m sick enough, I’d be in a hospital where...where I’d be comfortable, and they’d have medications for me and stuff. So, I’m kind of both ways. I am scared and I’m not scared.
8" Dawn: It's an ongoing circle of the more you’re anxious, the more you find to be anxious about. Um. so now she has anxiety attacks.
19" Brittney: I go to counseling. And we just like uh talk about things I’m afraid of and she just helps me figure out ways to not be as afraid. Like she just tells me to relax and think about good things instead of negative things.
11" Dawn: They were working on...on techniques to deal with the anxiety. And then she’s also on anxiety medications. And she’s pretty good at doing what she needs to do to control the anxiety.
9" Brittney: I think we should go to church, and pray and stuff. Because God is an important person. (giggle)
10" Dawn: Brittney is taking comfort in the fact that she believes in an after life. And so we found this lovely church that she’s embraced wholeheartedly.
4" Brittney: I love church. And um..... I just..... I feel safe there.
7" Brittney: If there was no God, how did we all get here? And where we would go if there wasn’t a heaven or hell?
0" MUSIC: Out
8" Narration 15: A LUNG TRANSPLANT MAY BE BRITTNEY'S BEST HOPE TO LENGTHEN HER LIFE. BUT THIS PROSPECT ALSO HOLD HOLDS FEAR AND ANXIETY.
33" Brittney: I might get a lung transplant. It’s exciting and it’s scary. [laughter] If I do get one, I’ll get new lungs and be able to do things that I wasn’t able to...to do now. But the scary thing is it’s like a big surgery. And also like, how long I’d live with those lungs and stuff. Because uh having someone’s lungs uh, you live a certain amount of time with them. It's kind of a freaky situation. [laughter]
(MUSIC)
" Narration 16: DOCTORS JAVIER KANE, JOANNE WOLFE AND JOANNE HILDEN EXPLAIN THAT YOUNGER CHILDREN OFTEN CANNOT EXPRESS THEIR ANXIETIES THROUGH WORDS. THAT'S WHERE A "CHILDLIFE SPECIALIST" COMES IN -- USING PLAY TO HELP CHILDREN CAST OUT THEIR INNER DEMONS.
16" Javier: Many times children do not have the vocabulary to be able to communicate their experiences, and we rely on child life to be able to do play therapy and to just sit down and in a relaxed atmosphere, be able to understand what the children are experiencing.
16" Joanne W: Children may express themselves for example, through drawings and art work in a way that they can’t do verbally. And so, there’s a lot of ways to enhance communication with children through the expertise of a child life specialist.
19" Joanne H: I’ve seen a picture drawn by a child with cystic fibrosis not long ago. A great big tree. It’s a leafless tree. It was very stark. And the child was on a swing under the tree, a tire swing. And the words written on this thing were that CF is going to get me. And if you looked carefully, the rope was fraying.
Trudy and child in waiting room:
0" Ambience: [22" total] Roomtone for Lionel Bear
0" Ambience: [8" total] Play amb.
5" Trudy: You've got your gloves on. You're all ready, aren't you?
Girl: Yeah.
21" Narration 17: TRUDY SCHMIDT IS A CHILDLIFE SPECIALIST WITH SEATTLE'S PALLIATIVE CARE PROGRAM. THE TOOLS OF HER TRADE INCLUDE "LIONEL BEAR," A STUFFED BEAR WHO HAS A "PORT-A-CATH" IMPLANT, WHICH IS USED FOR DRAWING BLOOD AND GIVING MEDICATIONS. TWO YEAR-OLD TRACY, WHO ALSO HAS A PORT, IS HELPING LIONEL BEAR WITH HIS.
19" Trudy: Let's see if we can help Lionel Bear Get his Port accessed.
Girl: Yeah.
Trudy: OK. You want me to do it, or do you want to do it?
Girl: No, me.
Trudy: I thought you might like to do that.
Trudy: Now, let's see
Girl: His pokies.
Trudy: Lionel Bear's sitting up so straight and tall. Is that what you have to do when you get your Port done?
Girl: Yeah.
8" Trudy: I was doing some medical play with a bear who actually has a little... a bump under his fur that feels like a Porta-a-cath. Um and ...
13" Trudy: Using the real blood tubes, real syringes, a butterfly needle with the needle removed, she could kind of work through the process of what was happening for her here today at the clinic. And hopefully decrease the stress of the experience.
6" Girl: Alright. All done owies.
Trudy: All done owies?. Alright. Boy that was fast for Lionel Bear.
8" Trudy: So, using the bear, sometimes you can hear them, "He has to get lots of pokies. He says it hurts when he gets pokies." Play lets them act some of this out.
10" Trudy: When we do your Port access today, to you want to have Lionel come with you?
Girl: Yeah.
Trudy: Alright. Let me go see if Lydia is all ready for you and we can have Lionel Bear walk back with us today, OK?
Girl: Yeah.
60" MUSIC: Break Music In.
60" Narration Break I: YOU'RE LISTENING TO HEART TO HEART, FROM PUBLIC RADIO INTERNATIONAL. YOU CAN PURCHASE A COPY OF THIS PROGRAM OR LEARN MORE ABOUT HEALTH CARE FOR THE DYING, AT OUR WEBSITE, "HEARTTOHEARTRADIOdotORG".
14" Narration 18: BONNIE SCHULTZ IS THE SOCIALWORKER ON THE PALLIATIVE CARE TEAM IN SEATTLE. SHE UNDERSTANDS THAT WHILE IT'S IMPORTANT TO DEAL WITH THE TRAUMA OF ILLNESS, WE NEED TO SEE THESE CHILDREN AS "KIDS" FIRST AND "PATIENTS" SECOND..
13" Bonnie: We get so focused on trying to cure each little thing that comes about, knowing we can’t cure the end piece, that we forget that the child has a life. And they have a right to their childhood.
14" Brittney: I love to sing and I like to uh swim. Those are my two favorite things to do. And I wanted to be in band, but some of the instruments might make me get out of breath and make me cough a lot. So, I’m...wasn’t able to do that.
24" Dawn: Brittney actually has up until the last year or so, has lead a fairly normal life. You know ridden her bike, and done swimming, and you know took gym and that kind of stuff. But her disease has gotten much worse. And so, over the last year she has been less able to do a lot of those things. She doesn’t take gym anymore. She can only ride her bike a short period of time.
8" Brittney: Doing soccer and stuff like that, I get out of breath. Like now that I’m getting older, my cystic fibrosis is getting worse. So, I get out of breath easier.
15" Bonnie: It may be that they go and play basketball as long as they can with the neighborhood kids. And then they go and sit and watch basketball as long as they can with the neighborhood kids. And then, it maybe that the neighborhood kids come to their home and talk about basketball.
11" Javier: The idea is that you begin to work with them in trying to help them get control of their life. And that is an important medical intervention even though it’s so subjective.
2" Narration 19: EVEN LEMONTAY HAS THE RIGHT TO BE A CHILD.
23" Dawn: Obviously I reconcile differently with Lamontay. You know normal is...is different for everybody. But a lot of people don’t understand that. "Well, if he can’t run, and jump, and he’s not going to sit up, and he’s not going to read, and that kind of stuff, then why bother?" And to me that’s not.…. I want his life within the parameters of...that he’s capable of, to be as long and as enjoyable as possible.
3" Narration 20: TEENS – LIKE BRITTNEY -- ARE A UNIQUE CHALLENGE.
33" Dawn: She’s definitely a thirteen year old. Like, you know, her room isn’t as clean as it used to be. And the poor oxygen guy trying to get to the tank in her room over her dirty clothes and her clean clothes and all that stuff. and it's a wonder he doesn't break his leg doing it. And, you know, "I’m always the one who has to do things. You nag me all the time." [laughter] But, but while it’s annoying as anything, at the same time I celebrate the fact that she’s normal. You know that she is doing what she should be doing at her age.
18" Bonnie: Adolescents are at a time when they so easily can feel isolated just because they’re skinny or they’re overweight. And let alone with a potentially life limiting illness. And so, it becomes very crucial for them to go to the prom or to go shopping or go to the movies……….
30" Dawn: I want Brittney to experience all the things that other kids should experience. Um, not the bad stuff. I don’t want her doing drugs (laughter) and those sorts of things. But I want her to have a life that is full of joy, and happiness, and experience, and opportunity. But after school the phone rings and it’s her friends calling. You know they like to talk on the phone. But Brittney is doing her treatment. She can’t spend the night at a friend’s house because she’s got to do her treatments
14" Bonnie: As a care team, we need to make sure that they can do those things. And so, maybe we need to look at how we do treatment to ensure that they can go to the mall this weekend. And that’s very important and reasonable.
16" Javier: We find meaning in our life if we are able to achieve something. You know to feel that your life was worth something, that you have an impact on someone else’s life, that you have important relationships that value you.
14" Dawn: You know if Brittney dies when she’s a teenager, will I look back and feel bad because I didn’t provide her as normal adolescence as I could? I don’t know. I mean it’s...it’s just a really hard thing to reconcile and I haven’t come to any answer yet.
5" Narration 21: AT SEATTLE CHILDREN'S THERE'S A PLAYROOM WHERE CHILDREN CAN RELAX AND JUST BE KIDS.
0" Ambience: Playroom
5" Trudy: That's a big truck.
Kid: Play dough.
Trudy: You made it right out of playdough. That's a good idea.
" Ambiance: Cross fade to Video Games.
13" Bonnie: And there’s a teen zone at Children’s, so teenage kids can meet there. They have videos and CDs and sofas and music and they can spend time with each other and talk. And they do.
" Narration 22: HANGING OUT WITH OTHER TEENS WHO SHARE YOUR PROBLEMS CAN HELP EASE THE SOCIAL BURDEN THAT COMES WITH ILLNESS.
12" Brittney: Last year people made fun of me a lot about it. And so like either people would be like really nice and like, "Oh, poor Brittney," or like mean to me, "Ooh, get away from me."
6" Dawn: She's wanting to be a normal teenager. And so to have something that makes her different….
9" Brittney: And I’m afraid like once I tell a boy, because since I have cystic fibrosis, if I...I’m afraid to like tell him because then they wouldn’t like me anymore or something.
" Narration 23: BRITTNEY IS PARTICULARLY WORRIED ABOT THAT "SPECIAL BOY"……
12" Brittney: He’s kind of a boy that if I told him, I don’t think he would like me, because he’s...I don’t know. He just doesn’t seem like if I told him, he would like me anymore.
(MUSIC)
5" Narration 24: PEDIATRIC PALLIATIVE CARE IS CENTERED AROUND THE CHILD, BUT IT'S REALLY ABOUT THE WHOLE FAMILY.
18" Javier: It is incredibly difficult for the parents and the family members. It affects their ability to sleep, their ability to relate to others, their ability to work. It affects the family’s ability to live a normal life.
11" Bonnie: And you have moments where you feel intense pain and sorrow. And then, you stop and you have hope again. And then you have your grief again.
30" Gerri: Anthropologically we need to believe that our next generation will outlive us. It’s very much ingrained us so...for the survival of our species that our children outlive their parents. So, the parents adopt the role of care giver, and nurturer, protector. And when it enters into their minds that their child might die, that uh sense of protector and nurturer gets just completely disrupted.
15" Joanne W: We talk a lot about the parents and the needs that they have, but there are often siblings that are in tremendous need of support as they’re experiencing their brother or sister having a life threatening advanced illness.
12" Bonnie: Everyone is hit with it. And if we can’t keep the family intact then we can’t really help the patient. And so, it’s our job to work with everybody in the family.
9" Narration 25: IT'S NOT JUST A MATTER OF EMOTIONAL SUPPORT -- THOUGH THAT IS CRUCIAL. FAMILIES ALSO NEED HELP JUST TO MANAGE DAILY LIFE.
12" Bonnie: We see families under siege. They are trying to keep their child alive. They lose their jobs. They get divorced. They have mental health issues. They are under siege.
(Lamontay breathing)
29" Dawn: Basic living is a problem for Lamontay because all of the...the things that we do, even a baby does automatically, Lamontay isn’t able to do. So, we have to turn him every two to three hours during the night, and we have to preposition him and we have to suction him. We have to dress him, diaper him. And Lamontay needs to be held. He needs somebody to hold him. And actually you know it’s funny, because I need that as much as he does. I have a physical need to hold him.
4" Narration 26: THE NATIONAL NURSING SHORTAGE HAS A TREMENDOUS IMPACT ON THESE FAMILIES.
22" Dawn: Lamontay is approved for twelve hours a day of nursing. The reality of what’s approved and the reality of what gets used are very different, because there’s a nursing shortage. And so, therefore, four out of the last ten days we have had no nurse at night or day. So, that means getting up every three hours all night long.
10" Narration 27: FAMILIES NEED HELP WITH ALL THE WORK INVOLVED IN CARING FOR A VERY SICK CHILD. BUT THEY ALSO NEED TO BE ABLE TO JUST TAKE A BREAK FROM IT ALL. THAT'S WHAT "RESPITE CARE" SHOULD BE PROVIDING.
15" Dawn: Having breaks is kind of good for the soul. It’s good for the spirit. It’s kind of nice to have a conversation without having to stop and suction. (laugh). So, it’s what keeps me being a grown up. (Laugh)
23" Bonnie: Look it. If you have two other children and you have a spouse and you need to do something healthy for yourself, that should be OK. And they should be able to have a place that’s safe, that can take good care, that knows their child and can support their family’s values. And we don’t really have that.
10" Dawn: I’m really blessed for the fact that my adult children are...are willing to...to help. Because there isn’t a pool of respite providers. In fact, that’s one of the biggest problems that parents have.
20" Bonnie In other countries that have had palliative care for a long time, they do have respite volunteers, and they have people that can come into the home and takeover for the parents. That makes sense. It is something that we are so lacking in, it is a crime.
? MUSIC: Zing
8" Narration 28: THESE FAMILIES ALSO NEED SOMEONE WHO CAN HELP THEM MANAGE ALL THE SERVICES AND SPECIALISTS INVOLVED IN THE CARE OF A SICK CHILD.
15" Dawn: Lamontay sees a regular pediatrician. He sees a neuro developmental doctor. An ENT that helps work on his airway. A neurologist for his seizures. And then he goes to spasticity management, And then he’s seeing a neurosurgeon.
15" Ross: The problem is that sometimes the whole patient gets lost in this effort. And there is an essential need for coordination of care. You need someone to help sort it all out.
15" Narration 29: GOOD CARE FOR THESE KIDS REQUIRES GOOD PLANNING. AND THIS IS WHAT'S HAPPENING AT SEATTLE CHILDREN'S WHERE GERRI HAYNES AND ROSS HAYS HELPED CREATE THE "PEDIATRIC PALLIATIVE CARE CONSULTING SERVICE". IT HELPS FAMILIES COORDINATE ALL THE CARE THEIR KIDS NEED.
17" Ross: In order to make the best use of all of this wonderful technical expertise, you have to have somebody putting it together interpreting it for this patient and checking in to find out whether it’s really needed or wanted or useful to the patient.
MUSIC: In
19" Gerri: Palliative care planning takes time when you’re addressing the needs of a child in an interdisciplinary setting. However, you save time downstream because the family has a way to make decisions. You don’t have to do crisis management. You do care coordination.
26" Narration 30: PROVIDING EXCELLENT CARE TO DYING CHILDREN SEEMS LIKE A NO-BRAINER. SO, WHY ISN'T IT HAPPENING ALL OVER THE COUNTRY? THE BARRIERS TO MAKING THIS A REALITY ARE DAUNTING. ONE ROADBLOCK IS A FEDERAL REQUIREMENT THAT FORCES PARENTS TO CHOOSE BETWEEN CONTINUING TREATMENTS TO PROLONG THEIR CHILD'S LIFE AND RECEIVING HOSPICE CARE. PAT EMERICK IS A PROJECT ADMINISTRATOR AT REGENCE BLUE SHIELD IN WASHINGTON STATE.
16" Pat: The way the Hospice benefit has been constructed pretty much across the country is that you must forgo any curative options that you might be trying, and sign a paper saying that you’re not going to pursue those.
25" Ross: Often you’re forced to give up the opportunity for other aspects of care like chemotherapy, or it might be in-home hourly nursing or something like that. That’s really being dictated not by the child’s needs obviously, or by any medical teams assessment. But it’s being dictated by who pays for healthcare.
26" Joanne H: As one example, transfusions are considered life prolonging. It’s routine part of cancer care. But even when a child is dying and a family has them in Hospice care, there are times that a transfusion is indicated because it will give them better energy, treat their fatigue, and they can actively play with their sibling for two or three more days. There are Hospices that will refuse to do those because they’re called quote curative or life prolonging.
8" Narration 31: THE "SIX MONTH RULE" IS ANOTHER MAJOR OBSTACLE. PAM COLYER -- WHO WORKS WITH WASHINGTON STATE MEDICAID -- EXPLAINS WHAT THIS IS ABOUT:
15" Pam: A physician has to certify that a client has six months or less to live. And so, if they can’t do that, then...then they’re not eligible for Hospice. So, all those people are not allowed to even get into the program.
14" Ross: In order for them to have their plan or Medicare of Medicaid pay for Hospice, they have to essentially promise to die in six months you know. Well, none of us can do that. And children much less than...than adults.
23" Pat: This is just impossible for families to face. It’s very hard for families to face when you’re talking about an eighty year old mother. It becomes utterly impossible when you’re talking about your eight year old child. And that kind of attitude, those kinds of restrictions keep families from accessing the kind of care they need.
12" Dawn: Why should a child with a condition like Lamontay not have the benefit of the services that he may need because we can’t predict that he’s going to die in six months?
4" Javier: It just doesn’t make sense. It’s a failure of the system.
17" Joanne W: I think the easiest solution would be to eliminate the six month rule for Hospice. And eliminate the need for parents to state that they are forgoing all curative or life prolonging interventions in order to receive the Hospice benefit.
7" Narration 32: THE PALLIATIVE CARE PROGRAM IN SEATTLE HAS DONE JUST THAT -- THROUGH A SPECIAL ARRANGEMENT WITH INSURANCE COMPANIES AND STATE MEDICAID.
17" Pat: The way we’re trying to work it at Regents BlueShield is to take our Home Health benefit and our Hospice benefit and combine them. People don’t have to give up the option of curative treatment to take advantage of palliative care.
8" Gerri: And you don’t have to say that a child with the need for palliative care will probably die within six months. That’s not even on...on the table.
" MUSIC: Zing
26" Narration 33: THE BIGGEST BARRIER TO GIVING DYING KIDS THE CARE THEY THAT THEY NEED IS -- AS USUAL -- MONEY. A LOT OF THIS CARE INVOLVES DOCTORS, NURSES AND SOCIAL WORKERS TAKING THE TIME TO TALK -- TO PATIENTS, TO PARENTS AND TO EACH OTHER. BUT OUR SYSTEM -- WHICH REWARDS TECHNOLOGICAL PROCEDURES, MORE THAN HUMAN INTERACTIONS -- OPERATES ON THE PREMISE THAT "TALK IS CHEAP" -- AND DOESN'T PAY FOR IT.
36" Javier: Like, for example, as an oncologist, I can do a bone marrow biopsy, a lumbar puncture, and I can give a child intrathecal chemotherapy, and I can get very good reimbursement for that. But I can spend two hours in sitting down with a family who has a child with a cancer that is progressing, and I can sit down and listen to their fears and their concerns and we can talk about advanced care planning, talk about the needs at the end of life, all the interventions that we know are compassionate and of great benefit to the patients, and I don’t get reimbursed for that.
13" Joanne H: There absolutely are palliative care services that are not reimbursed at all. Things like team conferences, case management over the phone by the physician. Something like ten to thirty minutes a month is what you’re allowed
8" Javier: The services of the advanced care coordinator. And the chaplain. Right now there are no reimbursement mechanisms.
5" Joanne H: Once in awhile social workers can bill for their services. Child life workers cannot.
6" Dawn: I feel bad when I call our pediatrician because I think, oh, my god, she’s losing money every time she talks to me.
11" Joanne H: And I’m very sensitive to the political incorrectness of saying something like, "You don’t pay me enough to...to take good care of your child or have those long conversations about your child."
3" Narration 34 (no 35): SO PROGRAMS END UP FUNDRAISING TO PAY FOR THESE SERVICES.
22" Javier: And it is just extraordinarily difficult for me to function as a physician, to take care of very sick children and then go to my office and work on a grant to get money to pay the nurses that were helping me take care of these children. It’s...it’s impossible. It is really um...it is ridiculous. It is not possible.
" Narration 36: IT'S EASY TO SAY, "JUST ADD MONEY". BUT IN THIS ERA WHERE GOVERNMENT PROGRAMS ARE BEING CUT LEFT AND RIGHT, WHERE IS THIS MONEY SUPPOSED TO COME FROM? CHANGING HEALTH INSURANCE RULES IS ONE IDEA. AND THAT'S WHAT THE SEATTLE PROGRAM IS TRYING TO DO. THEY'RE WORKING WITH HEALTH PLANS TO GET SOME OF THESE SERVICES PAID FOR -- ALTHOUGH THE HOSPITAL IS STILL PICKING UP A LOT OF THE TAB. WHILE NOT A PERFECT SOLUTION, IT IS FAR BETTER THAN MOST.
23" Ross: It started with hours and hours and hours of negotiation saying this is what we’d like to do, and these very, very tightly controlled bureaucratic health plans saying, yeah, we see, we see, we see, oh, but we can’t do that. And when we’d ask, well, why can’t you do that? And they’d say, well, because there’s no precedent. We’ve never done that before.
12" Pat: It does require that you think outside the box. It does require that you step out of the definitions of Hospice care. It does require that you think about things in a different way.
13" Narration 37: DOING IT RIGHT MIGHT ACTUALLY SAVE MONEY. PHYLLIS COOLEN, OF WASHINGTON STATE MEDICAID, FINDS THAT DEALING WITH PROBLEMS EARLY KEEPS DOWN THE NUMBER OF EMERGENCY HOSPITAL VISITS.
7" Phyllis: We were hoping for some savings (laughter) and in fact, when we looked at our data, it indicated that we were seeing some significant savings.
60" MUSIC: Break Music In.
60" Narration Break II: YOU'RE LISTENING TO HEART TO HEART, FROM PUBLIC RADIO INTERNATIONAL.
" MUSIC: In
17" Narration 38 (no 39): AT IT'S CORE, GOOD CARE FOR THESE CHILDREN IS ABOUT GOOD COMMUNICATION. FRANK DISCUSSIONS BETWEEN HEALTH CARE PROVIDERS, FAMILIES AND CHILDREN ARE ESSENTIAL. YET DEATH IS OFTEN THE ELEPHANT IN THE ROOM -- LOOMING LARGE, BUT NOT ACKNOWLEDGED.
MUSIC: Out
6" Ross: We have this sort of cultural denial that children die. It’s something that we don’t like to think about.
12" Bonnie: Physicians are trained to cure. And for them to admit defeat -- a quote unquote "defeat" -- is probably one of the hardest things they have to do.
21" Joanne H: It’s excruciating for the doctors to admit the child will die. And it’s, I would think, a thousand percent more excruciating for the parents to admit that. Parents, they’re hard wired to fix problems for their child. And you have to be admitting that this child is not going to be cured. That’s extremely difficult.
29" Bonnie: So, it creates a real challenge for families to hear this news early enough to begin to address their grief and then develop a plan of care. And they may cry and then we talk about how sad it is to be in this room talking about this subject. Because of course it's sad. And we don’t want them to cry alone. Most of the time we all do.
4" Narration 40: DEATH MAY BE THE HARDEST THING TO TALK ABOUT. BUT IT'S NOT THE ONLY THING:
22" Bonnie: Parents need to hear what their child’s symptoms are, what their child’s treatment options are, what the benefits are of the treatment options and what are the risks of the treatment options. And it isn’t only about us giving them information. It’s about them giving us information on how we’re going to work together as a team to take care of their child.
1" Narration 41: AND WHAT SHOULD THE CHILD BE TOLD?
21" Joanne H: Children need to hear the truth as they in their developmental stage can handle it. And parents' very loving instincts end up being protective sometimes saying, "Don’t tell, don’t tell." And a child will find that very lonely and frightening sometimes with their imagination imagining worse that reality.
0" Ambience: Amb for Dawn and Brittney to match. (Throughout scene)
18" Brittney: I was always afraid that they wouldn’t tell me if I was like dying or getting really sick. My mom said, "You’re supposed to know those kind of things. I would tell you everything." So, she...I...I can trust her that she would tell me if there was something important I needed to know, she would tell me.
6" Dawn: She’s got the cognitive ability and the need to know herself, because she’s bringing this up, not me.
6" Brittney: First ask my mom, and then if she doesn’t know, then she tells me to tell my doctor. But I always ask my mom first.
25" Joanne H: Children really can do this. They will talk about I want my art collection to go to my sister, I want you to play this song every Christmas, the most amazing conversations, and writings, and drawings happen if you’ve gotten there. And I only say this as a person who’s been humbled by it, and awed by it, and every time is like the first time. You sit there and say, I cannot believe how awesome this child is.
5" Narration 42: THE SEATTLE TEAM HAS CARE CONFERENCES TO KEEP LINES OF COMMUNICATION OPEN.
0" Ambience: Roomtone throughout scene (Up for Narration bites to match)
0" FX: Lamontay's breathing punctuates conversation throughout scene.
0" Ambience: [16" total] Paper rustling and walla before meeting.
6" Gerri: Now do you guys have the form for Lamontay?
Phyllis: Yes
Gerri: This is Lamontay's first one.
14" Narration 43: DAWN IS HAVING A CONFERENCE TO DEAL WITH ISSUES AROUND LAMONTAY'S CARE. CARE COORDINATOR GERI HAYNES AND REPRESENTATIVES FROM MEDICAID ARE HERE. SO IS DONNA SMITH OF VIRGINIA MASON'S MEDICAL CENTER. SHE'S LAMONTAY'S PRIMARY CARE PHYSICIAN:
13" Donna: Sometimes you just can get caught in the medical care for medical care’s sake responding to the moment and it just let’s you step back and really take a look at this child’s life in context.
11" Dawn: There were so many different feelings about what should be done for Lamontay. And it’s really a chance to kind of have everybody on the same page.
8" Narration 44: A BIG DECISION FACING DAWN RIGHT NOW IS WHETHER LAMONTAY SHOULD HAVE A "TRACHEOSTOMY" -- INSTALLING A TUBE IN HIS THROAT TO HELP HIM BREATHE.
1" Ambiance: Rustling sounds up.
5" Gerri: So, then, still on the table is the question of tracheostomy.
6" Donna: This is our friend Lemontay over here who is five years old and has problems with airway management.
Dawn: Right.
10" Donna: And we’re continuing discuss whether or not a tracheostomy would be an option that Dawn wants to consider for Lamontay.
10" Donna: Just talk to us a little bit about how you think about a tracheostomy. What you think it would provide for Lamontay as well the reasons you might be hesitant to do it.
15" Dawn: I’m looking at the life that he has and the benefits for his comfort. Because as he gasps, it’s not, oh, my god if he doesn’t have a trache, he’s going to die this second. But it’s more that he’s struggling to breathe, and therefore, miserable.
32" Dawn: But the downsides are many. It makes his care far more complicated. It means that he has to have more nursing and it makes it more difficult for somebody who's not a nurse to take care of him…..
Lamontay: Big breath
Dawn: (Laugh) You think it's funny? Huh? you think it's funny?….. He'd lose his ability to vocalize. Even though he's not using words he certainly communicates contentment and you know grumpiness and you wouldn't even be able to hear him cry probably. So….
5" Donna: Just listening to you talk, you sound less enthusiastic about it than you might have a month ago.
2" Dawn: Probably.
6" Narration 45: THE DISCUSSION TURNED TO A BIGGER ISSUE: HOW TO DECIDE WHEN HAS A CHILD HAS BEEN THROUGH ENOUGH?
15" Gerri: Thinking about, what is it that gives quality to Lamontay's life, you have the sense that people at the hospital are questioning your wisdom about what you choose to have done for Lamontay.
45" Dawn: It’s not just a feeling but people say….. I mean I have had discussions with people saying, "Why are you doing this? " And I have to be honest. Lamontay had a roommate last time he was in PICU that was a child who was I thought more...more handicapped than he was and I kind of thought the same thing. Like you know why...why go through all of this? The difficulty of this whole thing though is, you know, Are we keeping him alive for us? Or is it for his benefit? You know kind of like, am I being selfish, because we love him, and we’re looking at him from you know how much we’d miss him uh with [crying] you know, are we doing things that you know have made him miserable and not been a benefit to him?
9" Donna: I think your point about just keeping him alive so we don’t miss him, is a really good question........
(Lamontay's breathing)
Donna: But look at that beaming smile!
[Laughter]
7" Dawn: (Cooing.) Yes, you're very goofy. Yes
?" MUSIC: In
4" Narration 46: SO, WHO DOES HAVE THE RIGHT TO MAKE LIFE AND DEATH DECISIONS FOR A CHILD?
11" Bonnie: Oftentimes, we, as care providers, feel frustrated with the family because they don’t agree with us, or they have an opinion, heaven forbid.
19" Joanne H: The old school where the doctor got the information and made decisions and said what their recommendation was, those days are gone. I think we need to be careful not to swing the pendulum all the way over to, "Here is the information, you decide." And instead if one can create a partnership that says, "Let’s decide together."
3" Narration 47: AND WHAT RIGHTS DOES THE CHILD HAVE?
22" Joanne W: Under eighteen years of age children do not legally have the right to make medical decisions for themselves. But there is now sort of an understanding within pediatrics that children should give assent to receiving treatment. That is they should be in agreement to undergoing treatment.
3" Narration 48: BOB SNELL IS A SOCIAL WORKER AT SEATTLE CHILDREN'S HOSPITAL:
13" Bob: I’ve seen actually situations where there was a...a life threatening condition that needed a surgical intervention with a uh young person refusing it, and the parents saying, no, you have to save his life.
8" Joanne H: If we’re going to involve the child, we need to make a plan for whether the parent’s consent would override a child’s lack of assent.
10" Bonnie: You sit with a child who says no. And you work it out. You think with the child and you problem solve with the child. You take the time and things work out.
9" Bob: As children get older and reach age 12, age 16, age...maybe 18, then their assent becomes even more important.
9" Joanne H: We don’t have solutions right now except to say that we need to acknowledge it up front and do not make false promises. It’s a big challenge.
15" Dawn: I think that a lot of the decisions made in Brittney’s behalf are going to be made with Brittney. While she’s not a legal decision maker, it’s her life, and it’s her pain, and it’s her...her journey. You know as we talked about Brittney’s need for a lung transplant, it would be Brittney’s decision whether she want’s a lung transplant. I can’t make that decision for her. And if she says, "I don’t want one," I won’t argue with her. I think that thirteen year olds who have lived the life she’s lived certainly have the right to decide what the rest of her life should be.
8" Narration 49: BRITTNEY NEEDS TO MAKE HER DECISION WHETHER TO GET ON "THE LIST" FOR A LUNG TRANSPLANT. SHE'S COME DOWN TO STANFORD HOSPITAL FOR AN EVALUATION.
Check-in
0" Ambience: [35" total] Typing amb
0" Ambience: [22" total] Non-typing amb
0" Ambience: Hospital Amb. (Heavier)
9" Man: And shall I list you as her emergency contact?
Dawn: Surely.
Man: OK and signatures right here please. We're all set to go.
4" Woman: Hello Brittney. Hello (With more amb)
7" Dawn: So the sooner she can get the blood drawn, the sooner she can eat.
Woman: Sure. Go down there and tell them it's for Brittney
0" Ambiance: Lab Amb
34" (In Lab:)
LabTech: So, are you used to getting your blood drawn?
Brittney: Yeah.
Lab Tech: What arm do they usually draw from.
Brittney: This one.
LabTech: Oh, thank you!
Brittney: (Laugh)
LabTech: Squeeze real tight.
LabTech: This your first time here at Stanford?
Brittney: Yeah.
LabTech: What do you got Brittney?
Brittney: Cystic Fibrosis.
Lab Tech: What's that?
Brittney: Lung disease.
Lab Tech: Really.
Brittney: I didn't even feel that.
LabTech: Good.
LabTech: I'll get you some orange juice.
Brittney: Thank you.
15" Dawn: Brittney needs to get on the list as soon as possible because there’s a one to two year waiting period. And so the reality is you get on the list now, and hopefully get lungs before she is any...any sicker than she is now.
7" Narration 50: MARTHA RUSSELL IS THE TRANSPLANT TEAM'S SOCIAL WORKER. SHE DOESN'T MINCE WORDS WHEN EXPLAINING THE PROCEDURE TO BRITTNEY.
0" Ambience: Hospital Amb. (Lighter)
25" Martha: Someone would have to become brain dead to become a donor for you. And that would be then the full lungs of that donor would be transplanted into your chest. Any surgery, of course, you know does have risks, and it is probably the most complicated chest surgery that we do. So, it’s natural that you’d be concerned about that.
6" Narration 51: WHILE DAWN SAYS IT'S BRITTNEY'S DECISION, SHE IS WORRIED THAT BRITTNEY WON'T MAKE THE RIGHT DECISION.
10" Brittney: Like my mom asked me, "If someone called and said, we have a lung ready, would you take it?" And I said, "No," because I still have a long time until I get sick.
10" Dawn: She doesn't know how little lung she's been working with. She lives in the present moment. And it's a gradual decline. It's sliding down the hill.
0" Brittney: (Bad coughing].
2" Brittney: I don't need it right now.
18" Martha: Ultimately it’s yours and your mom’s decision, with the guidance of everybody else on the team. I think it's very brave of you, very courageous of you to come down here and have this discussion. And we'll just keep coming back and looking at it again.
?" MUSIC: In (Theme music)
20" Pat: I think the most important thing at this point in the development of the idea of palliative care in the United States is to see how far we can spread this concept and try it in as many different parts of the country as possible under as many different situations as possible.
18" Joanne W: We need to do more research, to figure out interventions that work, and those that don’t work. And we need innovation, and we need to think of new ways that incorporate sort of understanding from the child’s perspective what they’re experiencing and then how to intervene.
20" Ross: We don’t have to rewrite medicine in order to do a better job at this. We just have to use many of the resources that we already have in innovative ways and with a clear purpose, a clear goal to improve quality of life at the end of life. So, can we do better? Yes. No question that we can do better.
" MUSIC: Theme music in.
9" Brittney: I want to get married and have four children. I want to have a boy and a girl and then the other ones it doesn’t matter. (laugh).
9" Narration 52: HOPEFULLY BRITTNEY WILL HAVE A CHANCE TO REALIZE THIS DREAM. IF NOT, THERE'S A LOT WE CAN DO TO HELP HER MAKE THE BEST OF THE TIME SHE DOES HAVE.
MUSIC: Up in clear and down again.
22" Narration 53: HEART-TO-HEART: CARING FOR THE DYING. CHILDREN SOMETIMES DIE. THIS PROGRAM WAS PRODUCED AND DIRECTED BY CLAIRE SCHOEN. MUSIC BY STEPHEN SAXON AND DAVID NORFLEET. TECHNICAL SUPPORT FROM SCOTT KOUE. SPECIAL THANKS TO LINDA DAVIS, JERI SPANN AND VICKI WEISFELD ((WIYS'-FELD)). FUNDED BY THE ROBERT WOOD JOHNSON FOUNDATION. SUPPORT FOR THIS PROGRAM ALSO COMES FROM THIS STATION AND PUBLIC RADIO INTERNATIONAL STATIONS NATIONWIDE, AND IS MADE POSSIBLE IN PART BY THE PRI PROGRAM FUND. YOU CAN PURCHASE A COPY OF THIS PROGRAM OR LEARN MORE ABOUT HEALTH CARE FOR THE DYING, AT OUR WEBSITE, "HEARTTOHEARTRADIOdotORG". I'M CLAIRE SCHOEN. "
MUSIC: Out.
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TOTAL = 58'00"
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