Medicine and Mistrust on Native American Reservations
SJB: [Gavel] I call this hearing to order.
Mary Harris: A couple of months ago, there was a hearing on Capitol Hill about problems with the Indian Health Service, the federal agency that provides free healthcare to all Native Americans.
SJB: Today the Committee will hold an oversight hearing …
MH: The kinds of stories that got told that day were almost unbelievable.
This is Senator John Thune of South Dakota.
Senator John Thune: Another facility wa in such disarray that a pregnant mother prematurely gave birth on a bathroom floor--a bathroom floor. Without a single medical professional near by.
MH: Former Senator Byron Dorgan told this story of a six year old girl who went to an IHS clinic -- actually, she went to two of them -- complaining that her stomach hurt. She was told she was depressed.
Byron Dorgan: In fact, she had terminal cancer, and some months later she died in her mother’s arms, and said mom I’m so sorry I’m sick.
MH: In 1975, the Indian Health Care Improvement Act made providing high quality health care for Native Americans a “major national goal.” But today, the government spends just $3,000 a year caring for each Native patient. Compare that to the $7,000 we spend for every veteran. Or the $6,000 a year we spend on prisoners.
Victoria Kitcheyan, from the Winnebago Tribe in Nebraska testified, too.
Victoria Kitcheyan: It’s been said in my community that the Winnebago Hospital is the only place that you can legally kill an Indian. It’s 2016, and our people are still suffering at the hands of the federal government. Kill the indian, save the IHS sounds appropriate.
<< Music >>
MH: I’m Mary Harris and this is Only Human. When I hear stories like these, I think healthcare seems like just another broken promises we’ve made to Native Americans. But today you’re going to meet to a couple of doctors who have made keeping this particular promise their mission. Both of them are reservation doctors, working in some of the toughest conditions you can imagine. And both of them are Native American themselves.
Ken Bernard: So it’s about 5:15 here in Flagstaff which would make it about 6:15 in Tuba City.
MH: Every week, Dr. Ken Bernard gets in his car before dawn to commute to the Navajo and Hopi Indian Reservation.
KB: About ready to head out on my 75 mile commute, north on 89.
MH: He lives in Flagstaff, Arizona. But he works in the Emergency Department at Tuba City Regional Health Center, more than an hour away. He’ll stay there for three days, working 12 hour shifts, and sleeping in the doctor’s quarters.
KB: To the east, the sun hasn’t yet risen over the horizon.
MH: As he gets close to the reservation, he passes dusty roadside stalls selling native crafts and also border bars and liquor stores. The reservation is technically dry; it’s illegal to buy alcohol. But these businesses are thriving.
There is so much for a doctor to do on the reservation. And that’s why I wanted to talk to Ken along with his mother, Adrienne Laverdure. She’s more than a thousand miles away, in Wisconsin.
KB: It’s great to hear your voice. How does mine sound?
Adrienne Laverdure: Sounds good.
Both of them are Chippewa Indians.
AL: I don’t sounds too Michif, do I?
KB: No, I don’t think so, Mom.
MH: They speak Michif on the reservation where Adrienne grew up. It’s a combination of French and Ojibwe.
AL: Real high class. (both laugh)
MH: Ken Bernard’s a new doctor. He started working on the Navajo reservation 9 months ago. His mother has been a reservation doctor in Wisconsin for 18 years. But in a way, they trained to be physicians side by side.
AL: My mother sent me to college 2 weeks after I graduated. Never lived off the Reservation. I was terrified.
MH: She had Ken when she was a sophomore at University of North Dakota. And when she decided to stay & go to medical school - she kept him with her.
AL: I struggled, I wasn’t that smart, I had to study twice as hard as everybody else. Until I was a 4th year residency, I was sure they were going to find me out that I was a mistake and I wasn’t supposed to be there.
MH: Do you remember your mom in med school?
KB: Mom tells it pretty vividly: she used to put me in my cradle board & my papoose & stick me to the back of the wall while she was going to class, right?
AL: I’d put you in the papoose that I gave you and as long as you were wrapped up in there and fed you would just sleep. Maybe all that free education you got helped.
MH: At the time, Adrienne was a single mom. They were living on just 557 dollars a month, relying on rations of cheese and canned meat from the reservation. Even a regular shopping trip could underline how little they had.
KB: We were in the Columbia Mall in Grand Forks, North Dakota. We must have been around four or five. We were in KB Toy Stores and my brother Kyle picked up a toy gun set and he really, really wanted it. He was crying. And I say, Kyle, I’m sorry, we can’t have that. We’re just too poor. And apparently, my mom tells me this story later, I didn’t know she was watching or I didn’t know that she was around, but she said she cried about that and was always sad that we had this idea that we were poor, we couldn’t afford things, we couldn’t have things, but interestingly enough, I never wanted for anything growing up. That was how amazing she was.
MH: Well it sounds like she also gave you a sense of mission.
KB: This is true, this is absolutely true. I do remember how she told us -- it’s not about money. We’re poor. And it’s OK to be poor. And we help other poor people.
MH: This is the mantra Ken grew up with. Because his mom was determined to get her degree and put it to use. She failed her first set of board exams, and she spent six months studying even harder so she could pass. Eventually, she took a job on the Lac de Flambeau Reservation, in Northern Wisconsin.
By then, Ken was thinking about his own future. He knew he wanted to go to college, but no one in his family had left the Midwest. His guidance counselor told him to focus on state schools.
But he applied to Yale on a lark -- and got in. He’d never visited before he showed up for his freshman year, with a duffel and a few trash bags stuffed with clothes. His mom and his sister had driven him there.
MH: So what was it like when you first got to campus?
KB: We were gobsmacked. I do remember dropping my bags off at old campus for freshman orientation and just seeing the courtyard, and all those stone buildings and thinking, this is amazing. This is like a fairy book, like a castle that I’m walking into right now.
AL: Your sister said Harry Potter, remember?
KB:Yeah, exactly right, we were like, I’m going to Harry Potter school! And I had no idea what I was getting into.
MH: A lot of his classmates had never met a Native American before.
KB: They were like, do you live in a teepee? And I was like no -- I’ve built one and I watched fire in front of one but I don’t live in one regularly. Do you hunt buffalo? And I was you know what, I’ve never done that personally myself and that sort of went away about a generation ago, but I go to a supermarket just like anybody else to get food.
MH: You can hear him laugh when he tells this story, even though it is crazy to me that college students would still ask questions like this.
After Yale, Ken went to Harvard Medical School. And he’s learned to let these kinds of comments roll off him. It’s a kind of endurance he needs to get through his weekly shifts in Tuba City.
KB: [Curtain sound] Could you ask him -- has he felt like he’s been very short of breath?
MH: As an ER doctor, he sees up to 35 patients a day. Patients like Jay, a Navajo man who came in with stomach problems. Jay’s daughter drove him in.
P & P’s daughter: [speaks in Navajo]
MH: She’s translating here.
KB: How does he seem to you right now, as far as his mental status? Is this pretty much him, how he acts regularly?
P’s Daughter: Yeah, that’s why I didn’t know -
KB: So that’s why he wasn’t letting you know --
P’s Daughter: Yeah - he doesn’t want to be in the hospital.
KB: I wouldn’t either.
MH: Jay says he doesn’t want to be in the hospital. Not a lot of us would. But Ken says that for his patients, going to see a doctor is especially fraught.
KB: I think there is this issue of trust. I do think the relationship is a little bit different when people are wary of their providers as well as their hospital system about whether or not they’re going to care for them.
MH: Those horror stories about what Indian healthcare is like - his patients know them. It makes them nervous.
And the people who come here are often in crisis. The day we visited, Ken saw this patient who’d arrived the night before, drunk and on high on meth. The ER staff had to sedate him after the police brought him in.
KB: I’m Dr. Bernard. I’ll take care of you while you’re here.
MH: By the time Ken sees him, the patient has sobered up. But he asked our producer to stand back, to give them some room.
KB: The police or family was concerned that you may have been intoxicated, may have used some other drugs, and were planning on hurting yourself. And that you maybe had a firearm and you were planning on using it that night. Is that true?
Patient: I had a rifle inside my mouth.
KB: Okay.
MH: It’s hard to hear...but this patient is telling Ken that he had a rifle in his mouth. Then, he begins to tell more of his story.
Patient: I just lost my dad back in 2015
KB: I’m sorry to hear that.
Patient: I miss him so much. I’m the only boy in the family. I have four sisters. It seems like my whole life I’ve just always been alone.
KB: I was thinking today, I know it’s hard to get into behavioral health, but we have you here -- do you want me to call the mental health folks and see if they can come in and chat with you?
MH: After just ten minutes, Dr. Bernard persuades this patient to talk to the hospital’s mental health team.
KB: While you’re here, right, and you’re willing to talk to somebody and want to get help -- why don’t we do that for you. Do you want to think about it for a sec and I’ll come back?
Patient: I’ll just do it.
KB: You’ll just do it? Alright, brother. Let me get to work for you. You hungry want to get something to eat?
MH: Over the last fifteen years, the suicide rate for Native men jumped by thirty-eight percent. The rate for women jumped by eighty-nine percent. Spending even a day alongside Ken, you can see how urgent these problems are.
Just 30 minutes after seeing this suicidal patient, Ken sat down for an early lunch. He didn’t seem rattled at all. We asked him how he keeps his head above water.
KB: (Sigh) I feel that I am generally optimistic. And I think rather than optimism -- probably the word I would use for it is hopeful.
MH: I kept waiting for him to give us some sign that this work is just overwhelming. But for Ken, staying upbeat is a kind of coping mechanism. The Indian Health Service funded Ken’s medical training. In exchange, he is committed to stay at Tuba City for the next three years
KB: If we work hard enough, long enough and think creatively enough we could make a change -- not only for the patient that’s in front of you but probably for this entire community and I think that’s something that keeps me going and maybe can explain my disposition.
MH: When we come back: after decades working with the Indian Health Service, Ken’s mother has a different take on what’s possible and Ken grapples with his family’s own experience and shocking mistreatment by the IHS.
***************************************************
Midroll
MH: Last week we looked at prenatal screening for Down syndrome -- and the choices parents have to make now that they’re getting a powerful new blood test that can reveal chromosomal abnormalities really early on. Families from around the country got in touch to tell us how these tests had changed their lives.
Lisa Carson, from Demarest, New Jersey, says when her son Connor was diagnosed with Down Syndrome in the womb, it was hard to know who to tell, and when to tell them.
Lisa Carson: And it took a while to tell the family, to wrap their own heads around it and to be able to say it out loud. Because you do grieve for the normally able child that isn’t being born -- I did. Um. and I felt for me it was good that I could get that out of the way before he was born.
MH: Others said they didn’t want to know too much about their babies before they were delivered. Like, Judy Lewis, from Nashville, Tennessee.
Judy Lewis: I am grateful that I knew Robert first just as Robert. He was just my beautiful baby Robert before I was told that he had Down syndrome.
MH: Judy is a biomedical engineer at Vanderbilt University. She’s pro-choice. But she thinks that the existence of the test gives Down Syndrome an unnecessary stigma.
JL: Just because there happens to be a test for down syndrome doesn’t make it worse than the other parenting challenges that come down the road. No one turns out how we expect and we don’t have any control over any of it really.
MH: Meanwhile, she says Robert is living a full and happy life that challenges all the assumptions people might have.
If you have a story you want to share about an experience with Down Syndrome or prenatal screening we’d love to hear about it. Write to us at onlyhuman.org.
*************************************************
MH: You’re listening to Only Human. I’m Mary Harris.
We’ve been looking at the Indian Health Service through the eyes of two doctors, Ken Bernard and his mother, Adrienne Laverdure. Both are Native American themselves, and both are committed to trying to change the perception of the IHS, from the inside.
But the Indian Health Service has a troubled history. It’s a history that has touched their family deeply.
Just as Ken started with the IHS last fall, his mom told him the story of his great aunt.
KB: So Mom told me about how she was sterilized, forcibly, without her consent, at an Indian Health Service Hospital, where we’re from.
MH: His aunt had gone in to have her first child and her husband was given this form.
KB: Thinking that he was signing consent for a labor & delivery and being illiterate and not necessarily knowing what else was on the consent form -- had actually consented her for sterilization.
MH: For years, she tried to get pregnant again, but of course -- she couldn’t.
KB: And she didn’t find out about it until years later. And absolutely heartbroken. I couldn’t believe that that had happened -- and more than that, I couldn’t believe that had happened less than 50 years ago.
MH: The federal government has confirmed that doctors sterilized thirty-four hundred Native American women between 1973 and 1976. Some tribal leaders say the number is far higher.
And whether women consented to these procedures is unclear -- most doctors didn’t explain it to patients out loud -- which is a huge problem when your patients can’t read English.
KB: And I was thinking about, wow. This is the history that we bring with us into every patient encounter that comes to the Indian Health Service. So I think it really gave me a better understanding about what this special interaction or this very different interaction is with Native people and their health care providers and the Indian Health Service in general.
Dr. Adrienne Lavedure’s clinic: Alright, see you in two weeks. There’s the candy drawer.
MH: Dr. Adrienne Laverdure sees all kinds of patients in her clinic.
Locals call this area “the Northwoods.” Chippewa Indians have lived here since the 1700s.
Cultural artifacts are spread around Dr. Laverdure’s office: a birchbark canoe, hand-carvings, beaded, fur-lined gloves.
Eighty-eight year-old Carmilla Bernsteen is a longtime patient. She has vertigo.
AL: You get dizzy?
CB: Yeah. And I don’t know if it’s -- see, it’s like tender here.
AL: I mean, because your blood pressure’s good, your lab work’s been great -- no headache though, right?
MH: The nightmarish scenarios you heard about at the top of the show? What Adrienne tries to do is pretty much the opposite of that.
She knows Carmilla’s whole family. They talk about her son-in-law’s prostate cancer and a friend who recently passed away. They spend nearly an hour together.
CB: If you didn’t care for me, I don’t know what I’d do.
AL: I don’t know what I’d do either, if you didn’t come see me. Okay, I love ya. I’ll see you next week. I’ll be thinking about you this weekend, when you’re at that funeral.
CB: I’ll manage.
MH: But Adrienne can’t fix everything.
After seeing Carmilla, another patient shows up, someone Adrienne has known for years. She is in labor.
AL: I mean, she’s been in labor for two days. Water broke yesterday. One prenatal visit. I don’t understand. I mean, this was her fifth baby -- so she was just trying to be at home and tolerating it.
MH: Later, Adrienne told us that the clinic isn’t setup to deliver babies, so she got in an ambulance to follow her patient to the hospital.
DV: Because I’ve known her for a long time, since she was just a little girl. And I did most of her babies. So just to be with her and make sure she’s Okay on the way down -- and she was Okay, and hopefully’ll have a nice, healthy baby.
MH: Adrienne says seeing pregnant women might be the hardest part of her job. She wants to provide the best care. But her patients don’t always make that easy for her.
AV: Our biggest challenge, I think right now that we are facing and looking at is the high degree of neonatal abstinence syndrome. And what that is, is babies that are born addicted. And that needed treatment for withdrawal after they were born.
These babies are addicted to all kinds of substances. They’re jittery, they don’t tolerate food well. And Adrienne has to get them healthy. She treats them with morphine while they go through withdrawal.
AV: You know, to me, when I do OB -- it’s hard. Because, I used to say, this woman is abusing what do we do? If you say, OK, you’re using drugs and I’m going to report you -- you take the chance of her not coming back to you and not getting any care.
MH: She wants to be a doctor her patients trust. So, for a long time, as long as her patients came in for those crucial prenatal visits, she wouldn’t report their drug abuse.
AV: What we’re finding now, though, is that it’s not making a difference. They’re not going to a lot of their prenatal care.
MH: So what do you do? You’re saying it’s hard to tell a woman who’s pregnant to stop using, you want to be a physician she trusts --
AV: The thing is we need to get these women okay and say okay, we are not here to throw you in jail, we want you to join us and either you can join us voluntarily or we can go through the court system and have them court-ordered to our program.
MH: That must be so hard -- I mean, we just talked about all of these trust issues, especially with physicians. And for you, who’s seen both sides of that-- .
AV: It is very difficult. And --
MH: Have you had to take a woman to court and remand her to your program?
AV: We have done that many years ago, it was many, many years ago when I first came here. It was probably the first patient that would not stop using. And so she was court-ordered to stay in jail until she had her baby. She was very angry at that point, but now she’s older, and we’ve developed a relationship and she’s like, you know what Laverdure, you did the right thing.
MH: It’s these kind of small victories Adrienne can claim, two decades after starting her work on the reservation.
When she was a little girl, she wanted to become a doctor so she could be the head of the Indian Health Service. But the challenges her patients faced were so severe, she decided to stay in the clinic.
These challenges are personal for her. As we were about to leave, Adrienne started chatting with our producer. She said her own niece is struggling with addiction.
AL: With her, it’s drugs. I mean, she’s 24 and she has 6 kids. And none of them are with her.
MH: For the last five months, Adrienne’s been fostering one of these children, a nine month old boy. But she wants to give the baby to his mother.
AL: So I’m hoping to try to connect with her and I mean, it’s up to her to be whatever she wants to be, right. It’s difficult for us all, but for him, because he’s doing so well -- we’re just hoping that she’ll see the light soon. Because her oldest are like eight years old.
MH: To me, this seems like an admission of just how deep the problems are on the reservation. But Adrienne sees it differently.
MH: Is it hard to talk about these kinds of challenges?
AL: No. Because if you talk to anybody -- and I talk to my girlfriends or even the other people I work here with -- we all come from some type of dysfunction. It’s strange. It’s a way of saying okay this is where I came from. And so it’s something you tell people, yeah, this is in my family, I’m not afraid to air it because I am proof that you can make other decisions.
MH: Both Ken and Adrienne want to be honest about what they’re up against. Ken says this kind of honesty is the only way their patients will get better.
KB: The things that we are most afraid to talk about are probably where we can learn from our mistakes the most. The federal government, the Indian Health Service, local tribes have a long history of hiding things and for lack of a better term, whitewashing the things that we are embarrassed about in our history. But I think the time for that is over.
MH: We will keep checking in with Ken and Adrienne about how healthcare on the reservation is changing. And when they have an update, we’ll have them back on the show.
We are looking for more stories about what it’s like to be on the frontlines of healthcare delivery. And not just from doctors. If you’re a nurse, a physical therapist, a pharmacist -- and if you have a story about how your work has changed your life, we want to hear it. Post a comment on this episode at onlyhuman.org. Or you can find us on facebook at onlyhumanpodcast.