Transcript for the Piece Audio version of HEART-to-HEART Pgm III: Respecting Diversity

HEART-to-HEART Pgm III: Respecting Diversity

INTRODUCTION
" Narration 1: HEART-TO-HEART: CARING FOR THE DYING. FROM PUBLIC RADIO INTERNATIONAL. THIS PROGRAM -- RESPECTING DIVERSITY --- CONSIDERS THE CULTURE CLASH BETWEEN THE KIND OF CARE GIVEN TO THE DYING AND WHAT PEOPLE IN THIS DIVERSE SOCIETY OF OURS MAY REALLY WANT AS THEY APPROACH DEATH.

?" MUSIC: Theme Music IN
(Up in the clear. Then fade down and weave through Introduction.)

" Narration 2: EVERYONE IS GOING TO DIE. BUT, EACH OF US IS GOING TO DO IT IN OUR OWN WAY. WHEN WE FACE OUR DEATH OR THAT OF SOMEONE CLOSE TO US, WHAT WE NEED AND WHAT WE WANT DEPENDS ON WHO WE ARE. AND, IN THIS NATION OF IMMIGRANTS, OUR RELIGION, THE LANGUAGE WE SPEAK, THE WAYS OF OUR CULTURE ALL INFLUENCE OUR VIEWS ON DYING.

27" Lavera: I once attended a Baptist church one Sunday and heard a powerful sermon by a preacher who talked about issues of death and dying. And it was very interesting how medicine was portrayed. He said, "When the doctors say there is no more that can be done, that’s the point where Dr. Jesus comes onto the case."

11" Tamara: With the Chinese culture the family doesn’t want the patient to die in the home, because they believe that their spirit would return to the home, and bring bad luck to the family.

23" Evelyn: The doctor wants one person to tell him, "This is what we're going to do." And within the Hispanic culture you are going to have more than one person who is saying this is what’s going to happen. Because when you have a large family consisting of thirteen children, OK, and another fifty two grandchildren, and the great grandchildren, I mean the numbers multiply (laughter). So, you know it can be very problematic.

?" MUSIC Theme up in the clear and out.

8" Lavera: Medicine is its own unique culture. So, when it comes up against another perspective, they just clash. They are incompatible.

" Narration 3: DOCTORS AND OTHER MEDICAL PROFESSIONALS HAVE THEIR OWN IDEAS ABOUT WHAT GOOD CARE AT THE END OF LIFE IS ALL ABOUT. THESE IDEAS MAY BE VERY DIFFERENT FROM WHAT THEIR PATIENTS ACTUALLY WANT -- ESPECIALLY IF THEY COME FROM DIFFERING CULTURES. WHILE HARD WORKING AND WELL MEANING, THESE CAREGIVERS SOMETIMES HOLD ASSUMPTIONS AND STEREOTYPES ABOUT THEIR PATIENTS. AND THIS CAN LEAD TO MISCOMMUNICATION, TO MISUNDERSTANDING, EVEN TO DISCRIMINATION IN THE CARE THAT THEY GIVE TO DYING PATIENTS.

17" Norma: The medical system is based on Western values and beliefs. Autonomy, and informed consent, self-determination. That’s the foundation of this medical system. And there are laws that support those values.

13" Anne: I am always humbled by the assumptions I make that I don’t even know I’ve made. Sometimes my assumptions are so taken for granted, that I don’t realize that they’re not everybody’s world view.

?" MUSIC: Theme up and out.

ACCESS Pt. I

" Narration 4: A FEW GROUPS AROUND THE COUNTRY ARE BEGINNING TO LOOK AT HOW CULTURE INFLUENCES OUR VIEWS ON DYING. AN ORGANIZATION CALLED "ACCESS" IN SAN FRANCISO OFFERS A COURSE FOR SOCIALWORKERS WHO HELP DYING PATIENTS. NORMA DEL RIO AND ANN HUGHES ARE BOTH ON THE ACCESS BOARD.

0” Ambiance: Workshop ambiance.
Bring up under previous narration. Run in background throughout scene.

20" Norma [presenting at Access workshop]: We're going to talk about communication patterns, use of interpreters in end-of-life situations. And we're going to see how culture informs how we explain terminal illnesses, how we grieve, how we act when we're sick.

16" Anne: [presenting at Access workshop]: What do you think caused your illness? Why did it happen now? How does it affect who you are? How does it affect your relationships with others? What do you think will help your illness? And that is often very much influenced by our cultural beliefs.

" Theresa Kwong [at Access workshop]: I kind of sometimes compare different methods, different ways to approach patients.

" Narration 5: THERESA KWONG IS A STUDENT IN THE CLASS.

" Theresa Kwong [at Access workshop]: OK, this is what Chinese do. And how about Hispanic? And how about Japanese? How about Pacific Islander? What do they do?

" Narration 6: ONE OF THE ISSUES THAT ACCESS TACKLES IS LANGUAGE.

LANGUAGE

?" MUSIC (Chinese) in.

" Narration 7: TO UNDERSTAND WHAT SOMEONE WHO IS DYING IS FEELING, A DOCTOR HAS TO UNDERSTAND WHAT THEY ARE SAYING. LANGUAGE PLAYS AN ENORMOUS ROLE, WHEN ONE IS DYING. AND IN AMERICA, WHERE PEOPLE SPEAK EVERY LANGUAGE ON EARTH, A DOCTOR AND PATIENT SPEAKING DIFFERENT LANGUAGES CAN BE A PRESCRIPTION FOR TROUBLE.

14" Anne: Healthcare providers that don’t speak the language of people we take care of, we don’t know what they fear, and what they feel, and what they understand. So, language is critical in being able to provide end of life care.

" Narration 8: PROFESSIONAL INTERPRETERS ARE HARD TO FIND.

MUSIC: (Chinese) Fade music out by here.

5" Norma: They use the social workers, they use the janitor, they use the cook to do translations.

11" Tamara: People can pull anybody that’s walking by to be a translator, Or the family. Grandchildren are asked to translate. You know, young, young grandchildren. (ID'd later.)

13" Anne: Sometimes a child who is bilingual is asked to give devastating news to an older family member which is a tragedy and is absolutely inappropriate, and yet that happens all too often.

11" Norma: It is a question of money. And the first services that are cut from the budget are translation services. They feel that they are not important enough.

" Narration 9: EVEN WHEN PROFESSIONAL TRANSLATORS ARE AVAILABLE, THEY MAY BE POORLY TRAINED -- CREATING ANOTHER SET OF PROBLEMS.

8" Anne: Many translators that we use in...in the medical system may not have medical terminology training.

15" Carmelita: There are certain words that don’t have a direct translation in different cultures.

" Narration 10: CARMELITA TURSI, ASSOCIATE DIRECTOR AT THE AMERICAN SOCIETY OF AGING:

cont. Carmelita: For instance, Alzheimer’s Disease or dementia can be interpreted in different communities as just crazy.

15" Norma: Another word that doesn’t have a translation in many languages is bereavement. And we try to tell them that we have bereavement services available to them, we have to look for different words to...to explain to them.

7" Carmelita: So how then do you begin to develop programs and interventions when there's no word for it?

18" Tamara: And just because they speak the language doesn’t mean they’re in touch with their feelings on death and dying. And if they’re not comfortable themselves speaking about end of life issues, they may skirt around the issue or really summarize it and...and not really speak to it directly.

" Narration 11: THESE ADVOCATES FOR THE DYING SAY THAT WE SHOULD HAVE RULES THAT REQUIRE HOSPITALS AND HOSPICES TO HAVE GOOD TRANSLATION SERVICES. THAT WE SHOULD ENFORCE THESE RULES. THAT WE SHOULD PAY FOR THEM. SOME SAY WE NEED TO GO ONE STEP FURTHER AND ELIMINATE THE LANGUAGE BARRIER ALTOGETHER.

MUSIC: (Chinese) Reprieve In

16" Tamara: Even the best translation may not be good enough. There are so many emotionally charged issues, and there’s so many cultural factors that make the dying process so intimate for every culture.

" Narration 12: THE BEST SCENARIO IS TO HAVE DOCTORS, NURSES, SOCIAL WORKERS WHO CAN SPEAK DIRECTLY TO THEIR DYING PATIENTS -- WITHOUT A TRANSLATOR. ONE PROGRAM IN SAN FRANCISCO IS DOING JUST THIS. IT'S CALLED SELF HELP HOME CARE AND HOSPICE. TAMARA ((TA'-MAH-RAH)) LIANG IS THE DIRECTOR.

14" Tamara: Most of our patients are Chinese. Monolingual Chinese speaking. And all of healthcare providers speak Cantonese as well as some Mandarin. So, we don’t use translators at all.

" Narration 13: THERESA KWONG IS A SOCIAL WORKER AND CHUI ((CHEW) LEE IS A NURSE WITH SELF HELP. THEY'RE VISITING MRS. SANG, WHO IS DYING OF PANCREATIC CANCER.

MUSIC: (Chinese) Fades out by now.

[Note: Start each bite of Chinese in the clear. Then fade down under the translation. Weave in and out.]

0" Mrs. Sang’s apartment ambiance/rustle [Total 15”]
0" Mrs. Sang’s apartment roomtone [Total 30”]
0" Theresa Kwong’s Translation – roomtone

36" Mrs. Sang and Chui: (in Chinese) [Gastric 41-7.39 to 8.15]
0" Theresa Kwong: [29" Total] Mrs. Sang was telling Chui that there is like some kind of gastric burning. And it makes her very uncomfortable. And that the pain comes on and off. And Chui was telling Mrs. Sang to take the Mylanta whenever she feel this kind of discomfort. And Mrs. Sang was telling Chui that it feels like heartburn.

27" Theresa Kwong: The reason why we speak in Chinese with the patient, we can understand the patient directly what she meant. Where is the pain coming from and how does it feel? And when we translate it into English, sometimes it will lose the context and the meaning -- what the patient want to express. Her feelings and her pain.

" Narration 14: LYING IN BED, IN HER SMALL APARTMENT, MRS. SANG CAN BARELY SPEAK ANYMORE -- EVEN IN CHINESE. BUT SHE HAS SOME IMPORTANT THINGS TO DISCUSS.

42" Mrs. Sang and Chui: (in Chinese) [26" total] [daughter 41-1.19 to 1.50]
Theresa Kwong: Mrs. Sang was all worried about her daughter from China to...to come to US. Because Mrs. Sang haven’t seen her daughter for twenty-four years and she really want to see her daughter again. And the paper process is still ongoing. And she was saying that she afraid she can’t wait….. can’t wait too long.
Mrs. Sang: (in Chinese) [wait 41-3.33 to 3.35]
Theresa Kwong: And we try to see if there is anything that we could help the patient deal with her emotional and...and deal with her worryness.

16" Anne: We don’t have enough nurses now to take care of people. And I think if we made an attempt to recruit people of color into nursing and medicine and social work, we would transform end of life care.

" MUSIC: (Chinese) Reprieve.

20" Mrs. Sang and Theresa: [72" Total] (in Chinese) [story 41-1.2.51 to 1.4.05]
Theresa Kwong: [14" Total] Mrs. Sang was saying that the social worker is there to you know like talk story with her and also try to help her to kind of like solve any kind of problem that occurs with her in this situation.

" MUSIC: (Chinese) Up and out.

NON-VERBAL

?" MUSIC: (Mexican Corrido) In and under.

" Narration 15: LANGUAGE IS IMPORTANT. BUT WORDS AREN'T EVERYTHING. A LOT OF COMMUNICATION IS NON-VERBAL.

20" Evelyn: Within the Hispanic culture, we are a very emotional culture in a positive way. We are very affectionate and loving in terms of touching and things of that nature. But within the Western culture, you know, god forbid that you would give you doctor a kiss because [laughter] who knows what the consequences of that would be.

15" Tamara: Chinese are a bit more reserved. For example, a healthcare provider of a different culture giving them a great big hug, that would make them really freeze. [laughter] freeze up. Feeling like, "Hmm, this person doesn’t understand me."

22" Theresa: In Zuni, you know, when questions are asked of us, we don’t always look at the person directly and we take quite awhile to answer. And, by the time we come up with an answer, we see the doctor walk away [laughter] thinking that that we don’t want to be bothered or that we don’t want to talk to them. But, that's just the way we are.

19' Gema: Part of the Asian Pacific culture is respect and you show respect by not questioning. You show respect by not going to for a second opinion. You show respect by waiting three hours for your doctor. And in some cases, people misinterpret that respect.

26" Norma: There are some cultures that you might be telling them something and they might say, "Yes, yes," when they are really meaning, "I hear you" not that "I understand what you’re saying." You walk out of the room thinking, "Oh, they understood. I told them and they said, "Yes." And there are many repercussions. Mis-medication, Misdiagnosis. Tremendous repercussions.

" Narration 16: WHEN IT COMES TO THE SUBJECT OF DEATH, SOME FAMILIES DON'T WANT TO TALK ABOUT IT AT ALL. IN MANY CULTURES TELLING A FAMILY MEMBER THAT THEY'RE DYING IS SIMPLY UNACCEPTABLE.

9" Bruce: In Zuni, families don’t want to talk specifically to the dying patient about their illness, or even tell them what their illness is.

8" Theresa: Traditional folks feel that it is something that we’re wishing upon them or that we’re putting the hex on them, something like that.

11" Tamara: There’s a strong belief in the Chinese culture that if you tell the person, then they’re...they’re going to have a terrible end of life and not be happy, and they want their last days to be happy.

12" Evelyn: We don’t want them to know that they have cancer, we don't want them to know that they are dying. You know let’s not tell them. Let’s just let them go in peace The family tries to shelter them by not giving them the information.

" Narration 17: BUT THIS PUTS DOCTORS IN A BIND, BECAUSE THEY ARE TRAINED TO RESPECT A PATIENT'S AUTONOMY -- NOT TO HIDE INFORMATION FROM THEM.

15" Anne: In the United States one of the principles of bioethics is veracity or truth telling. So, the expectation is that doctors will tell patients what’s wrong with them and what they can do about what’s wrong.

9" Lavera: And you know you hear that and you say, "Well, of course, everyone wants to know…… everyone is due the truth. However, that’s not necessarily a universally held value.

" Narration 18: LAWS LIKE THE PATIENT'S BILL OF RIGHTS ARE INTENDED TO PROTECT PEOPLE. SOMETIMES THEY END UP JUST COMPLICATING THE ISSUE.

33" Anne: The Patient Bill of Rights is commonly accepted in most states around the country. That patients have rights to information about their condition and treatment, and the expectation that they will be provided that. The Patient Self Determination Act, which was passed by Congress about twelve years ago, said that healthcare organizations need to elicit, or at least provide the opportunity for patients to articulate their wishes if they were seriously ill and not able to speak.

13" Richard: How do you communicate with a patient when their family has said, “We don’t want you to tell Grandpa that he’s dying, because in our culture that’s not something that’s done”?

27" Theresa: We had an experience where a father was diagnosed with a terminal illness and was told by the physician. And it caused a lot of anger and devastation with the family because the family felt that it shortened their father’s life. The approach that was used was something that up to now they are very angered about. Very angry.

18" Norma: In the Russian community, we had a patient once, a woman, who was told by the oncologist, "You have terminal breast cancer." And she walked out of the room, and she told me, the medical social worker, "She killed me when she gave me the diagnosis."

" Narration 19: THIS IS JUST ONE EXAMPLE OF THE CONFLICT BETWEEN WHAT MEDICAL INSTITUTIONS ARE DOING TO TRY TO HELP PEOPLE WHO ARE DYING AND WHAT THESE PEOPLE ACTUALLY WANT AND NEED AND EXPECT.

11" Bruce: The intent is good to understand what patients want. The mechanism just doesn’t, often doesn’t fit very well for how people think about their health, their illness.

12" Norma: We have to find common ground. But to find that common ground it takes time. And who’s going to spend the time to sit with the patient and find out how much the patient wants to know?

" Narration 20: THE HOME HEALTH AGENCY IN ZUNI -- WHICH SERVES A ZUNI, NAVAJO AND WHITE POPULATION IN NEW MEXICO -- PROVIDES ONE MODEL. BRUCE FINKE, WHO IS JEWISH, WORKS WITH THIS PROGRAM. AND THERESA BOWANNIE, WHO IS ZUNI, IS THE PROGRAM'S ADMINISTRATOR. THEY ARE PROVIDING CARE FOR DYING PATIENTS IN A WAY THAT RESPECTS TRADITIONAL CUSTOMS.

5" Bruce: In Zuni, there are ways to talk about death and there are ways not to talk about it.

27" Theresa: Take example, the living will or advanced directives. When we present it, we talk around it like, perhaps to an imaginary person. Saying that, "What if someone’s heart stopped beating, or what if they stopped breathing, do you think that person should have perhaps CPR, or should they be put on a ventilator or things like that." We create a scenario for them.

4" Bruce: It’s an approach that’s different from checking boxes and signing forms.

0" Ambiance: Room ambiance for M's home.
0" FX: [Total 23"] Pills dripping. Bag Rustling.

4" Nana: OK Good. 98.2
M: Alright.
Nana: No fever with that.

" Narration 21: NANA ((NAY'-NAY)) IS A HOSPICE NURSE IN ZUNI. SHE VISITS THIS ZUNI WOMAN AT HER HOME -- PROVIDING THE CARE SHE NEEDS, WITHOUT TALKING DIRECTLY ABOUT DEATH.

16" Nana: Check your blood pressure here.
(Sound of blood pressure device)
You still have all your medicine?
M: Huh uh.
Nana: How's your appetite doing?
M: In the morning is better
Nana: OK 116 over 87. That's pretty good.
M: I guess.
(Sound of device being removed)

18" Theresa: She’s in her forties and she was diagnosed with leukemia. Nana goes in once a week and does an assessment, takes vitals, basically talks with her, see what’s going on. If there’s anything that needs to be relayed to the doctor, she does that.

10" Nana: Are you still using your walker or cane?
M: My walker's hiding by that TV.
Nana: Oh, my goodness, Hiding from us?
M:: (Giggle)
M: Nana takes care of us real good.

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".

RELIGION

15" MUSIC: Church Choir [Song A].
(Fade up under next bite.)

" Narration 22: RELIGION HAS A PROFOUND IMPACT ON THE WAY PEOPLE VIEW DYING. MORE THAN 90% OF AMERICANS TODAY SAY THEY BELIEVE IN GOD. AND MANY PEOPLE SEE DEATH AS THE ULTIMATE RELIGIOUS EXPERIENCE. DOCTORS ON THE OTHER HAND ARE TRAINED TO VIEW DYING AS A "MEDICAL PROBLEM". THE GOAL IS TO "SAVE" THE PATIENT. BUT ITS THE DOCTOR WHO DOES THE SAVING -- NOT GOD.

22" Frank: The doctors, they’re concerned of how can I get this body fixed, repaired, put back in order. And I don’t see them seeing that the spiritual part as essential to the health, and to the wholeness and the well being of that person that they’re dealing with.

" Narration 23: IN OAKLAND CALIFORNIA, THE FAITH PRESBYTERIAN CHURCH CHOIR LEADS SERVICES WITH REVEREND FRANK JACKSON.

" MUSIC: Church Choir [Song A]. Up in clear for one phrase.

18" Frank: Our congregation is primarily African American, about 95%. And there’s a belief that well, whatever this doctor does, and whatever this doctor doesn’t do, ultimately it has to be in God’s hands. OK? God ultimately is in charge.

8" Regina: I’m a woman of faith, and I’m operating in faith. And it’s just faith [cries] that keeps me going you know.

" Narration 24: REGINA DYER IS AN AFRICAN-AMERICAN WOMAN. SHE HAS BREAST CANCER.

33" Regina: The uh breast cancer has reoccurred and in the same spot, and it’s real aggressive. and uh, the prognosis is uh, gosh, I’m going to start crying. They told me I have maybe two to five years to live. [crying] Of course, I choose not to believe that. You know, I choose to believe God. God gives the final OK. Well, I believe, he gives the OK who leaves the planet. You know he...he has the last word.

" Narration 25: FOR REGINA, FAITH IN GOD IS TEMPERED BY HER FAITH IN MEDICINE:

10" Regina: I mean I’m not a fanatic to where uh you know I’m going to be walking on snakes or something like that. You know, of course, I’m going to go the doctor and...and take the treatment as well.

0" MUSIC: Choir [Song A]. Up and out under next bite.

17" Regina: I think we really kind of underutilize doctors because of our religious beliefs. You go up there and say, "God, why did you let me die?" And he said, "I sent you a doctor, fool!" I mean...[laughter]. So I believe he wants us to utilize doctors.

" Narration 26: HOWEVER, SOME PEOPLE BELIEVE THAT GOD'S WILL HAS NOTHING TO DO WITH DOCTORS. SO, FAITH IN GOD CAN HAVE A BIG INFLUENCE OVER MEDICAL DECISIONS THAT NEED TO BE MADE WHEN ONE IS DYING. EVELYN JORDAN IS VICE PRESIDENT OF THE FLORIDA COALITION ON HISPANIC AGING:

6" Evelyn: We believe in destiny. Everybody has a destiny and God knows what’s best for you and when it happens, it happens.

27" Gema: If I believe I have control over my life, I also have control over my death.

Narration 27: GEMA HERNANDEZ IS PRESIDENT OF AGING AND CULTURAL CONSULTANTS IN TALLAHASSEE.

Gema: And therefore, I believe in a living will. I believe in a power of attorney. I believe in all of these things because the focus of control is in me. However, if I believe that the ultimate power is in the hands of God, then treatment may or may not be that important. Why? Because God is going to take care of me.

9" Anne: Frequently as a healthcare provider, I’ve worked with patients or families who have said, "I don’t need to make a decision about this. This is in God’s hands."

" Narration 28: A DYING PATIENT MAY FEEL THEIR FATE IS IN GOD'S HANDS. BUT THE HEALTHCARE SYSTEM HAS A VERY DIFFERENT PROCESS FOR DECISIONMAKING.

14" Bruce: There’s a huge emphasis on the Do Not Resuscitate, Do Not Intubate order on hospitalization. So, that every patient who comes into a hospital is expected to identify whether they want to be resuscitated or whether they want to be intubated.

16" Evelyn: We’ll give a person a piece of paper and say, "OK, this is your Directives. What do you want us to do? If you can’t talk, should we put you on machines or not? So, admitting me to a hospital and tell me to sign a medical directives, is not something that I’m really going to be listening to.

25" Bruce: And what happens is that people opt out of that discussion. One simply signs and says, “No, we don’t want to talk about advanced directives.” And that’s an option. That’s fine. That gets the institution off the hook. The institution has asked. The individual has answered. And now, we can move onto other things. But it’s a legalistic non-solution, to a very real problem which is that we do need to know what people want.

0" MUSIC: Choir [Song B]. Begins under previous bite. Runs under Sermon

29" Frank: [At the pulpit]
The Lord is my shepherd, I shall not want; he maketh me lie down in green pastures. He leadeth me beside still waters. He restoreth my soul. He leads me in the path of righteousness, for his names sake. Yeah though I walk through the valley of the shadow of death, I fear no evil; for thou art with me……….. (fades out under music)

7" MUSIC: Choir [Song B]. Fade up as sermon fades down. Run in clear for a phrase. Fade down under following bite.

26" Lavera: In my research where I did follow African Americans who were dying in public hospitals, there would be clergy in the room with patients and when the physician team would walk in, the clergy would just automatically get up and leave as if their time was not as important with the patient as the doctor’s time. It was the culture of that hospital that said that the doctor's work is the most important. And I always found that really disturbing.

" Narration 29: DR. LAVERA ((LA-VEER'-AH)) CRAWLEY IS EXECUTIVE DIRECTOR OF THE INITIATIVE TO IMPROVE PALLIATIVE CARE FOR AFRICAN-AMERICANS. SHE SAYS THAT RELIGIOUS LEADERS OFTEN DON'T FEEL WELCOME IN HOSPITALS.

20" Lavera: The church is a focal point that's a very important resource. And when you’re thinking about death and dying, the clergy are an extremely important resource, as important as physicians in terms of helping families make meaning of the process, and helping them negotiate the care that needs to happen.

5” Frank: Any physician who is not aware culturally of that, misses an opportunity

" Narration 30: CHURCH LEADERS THEMSELVES BEAR SOME RESPONSIBILITY FOR THESE PROBLEMS.

23" Frank: I don’t think that the church is doing a very good job, on our end, of providing the kind of care that a person needs in the closing hours of their life. Pastors feel ill equipped. They feel ill trained to deal with the issue of the dying. There's a sense that, it's something that we don't want to do.

" Narration 31: BOTH RELIGIOUS AND MEDICAL GROUPS ARE TACKLING THIS PROBLEM -- THROUGH PROGRAMS THAT GET DOCTORS AND CHURCH LEADERS TOGETHER.

22" Frank: I had a chance to work with a Hospice group.....And the clergy and the doctors had conferences, so that we’d sit down and talk with each other. And actually, not only talk, but to involve ourselves with that process of those who were dying. But I thought, “Now this is a good model to follow. And something like that would be very helpful to both parties.

23" Lavera: There is a program that’s happening in Harlem, as part of the Harlem Palliative Care Network, in which lay ministers are being taught some basic grief management skills, and how to deal with families and patients who are dying, so that they can go back to their congregations and work with members of their communities, of their churches in these issues.

0" MUSIC: Church Choir [Song C] Up and Out.
Segue into Zuni Music.

TRADITIONAL PRACTICES

?" MUSIC: (Zuni) In

" Narration 32: HEALING IS PART OF MANY RELIGIONS. AND, FOR PEOPLE WHO PRACTICE NON-WESTERN RELIGIONS, TRADITIONAL TREATMENTS CAN BE VERY IMPORTANT IN THE FACE DEATH. BUT WESTERN MEDICINE RARELY RECOGNIZES THE THERAPEUTIC POWER OF FAITH.

18" Bruce: Speaking from my experience here in Zuni, one of the issues that needs to be understood is that religion and culture aren’t different here. What we would consider religion affects everyday activities from the minute one awakens to the minute one goes to sleep, and while one is sleeping, in fact.

10" Theresa: Practically everything we do has to do with our religion. That’s just the way we’ve been raised. And that it’s an everyday part of our life.

" MUSIC: Zuni out

20" Norma: People use different healing mechanisms. For example, in the Latino culture we have curanderos. In the Caribbean we use espiritualistas. In the Chinese culture people use herbs, acupuncture and other energy systems.

11" Theresa: And in the Zuni culture, a person who is facing a terminal illness may request for a traditional healing or cleansing ceremony.

9" Evelyn: Some people believe in doing potions and killing animals and doing sacrifices and things of that nature, in the hope that something positive will come out of it.

(ACCESS Pt. II)

0” Ambiance: Workshop ambiance.
Bring up under next narration. Run in background throughout scene.

24" Norma [presenting at Access workshop]: So imagine when somebody is facing a life threatening illness. And that person is a recent immigrant, doesn’t know the health care system, doesn’t speak the language, doesn’t know the United States culture. It could be a very disorienting, devastating experience. We see that a lot with our patients.

" Narration 33: IN THE ACCESS WORKSHOP, NORMA DEL RIO’S STUDENTS LOOK AT WHAT CAN HAPPEN WHEN TRADITIONAL HEALING PRACTICES RUN UP AGAINST WESTERN MEDICINE.

20" Norma: In the Access curriculum we use real cases, because that illustrates better what we are trying to communicate to the students. In Module One we use a situation with this couple who both had AIDS. They were Latinos and they decided to consult with a healer.

" MUSIC: (Latino) In under previous bite

" Narration 34: A STUDENT READS THEIR STORY TO THE CLASS…..

52" Woman (at Access workshop, reading from workshop binder]:
[Note: fade up reading from under narration]
[……….Juan was wheelchair bound and his right side was paralyzed.] When Juan was informed that his condition was terminal, he and his wife found a faith healer who was a Naturista. The faith healer would visit them . And rub different oils on different parts of their bodies to remove what was believed was malicious contamination. The healer instructed them to stop taking their medications because they were making them sicker. They followed his instructions. Both Juan and Lola felt better the first few days of this treatment. But after a week, they both became very ill. Juan developed severe diarrhea, became dehydrated and weaker. He died 3 months after this episode. Lola was put back on her medications. And she is still alive and healthy.

MUSIC: (Latino) Out

36" Norma (presenting at Access workshop): This is a true story. And many people at that time said they are not complying with the treatment plan. And what was interesting was that the doctor, she knew about what was going on. They were told what could be the consequences of stopping treatment and they did tried it. And, so did they act responsibly? And was it healthcare provider's responsibility to persuade them not to follow healer's recommendation? What do you think?

19" Theresa: We needs to uh give them the dignity to choose those kind of life that they want to live. That’s their life. And whatever they choose to do to their body, I think they have a right to do it. I would personally, really strongly support that.

7" Norma (presenting at Access workshop): The point here is to understand that there going to be these clashes and their going to be these differences.

0" Ambiance: Access Workshop Walla OUT

" Narration 35: DOCTORS ARE PUT IN A TOUGH SPOT ON THIS ONE. HOW TO BALANCE USING WESTERN MEDICINE THAT MAY PROLONG A PATIENTS LIFE OR EASE THEIR SUFFERING WHILE STILL RESPECTING THE CULTURE OF THEIR PATIENT. ONE THING THAT SOME DOCTORS ARE DISCOVERING IS THAT IGNORING ALTERNATIVE PATHS ALTOGETHER CAN IMPACT THE WESTERN TREATMENT THEY MAY PRESCRIBE.

27" Evelyn: A doctor might give you a prescription for high blood pressure, OK. And that person will go and take the prescription for the high blood pressure. But in addition to that, they will make a tea with garlic. Or they will take aloe vera and squeeze the juice out of the aloe vera and they drink that juice three and four times a day. Now, all of a sudden, you have a person who is...instead of having high blood pressure has low blood pressure. And the doctor cannot you know fathom why this is happening.

25" Anne: Doctors and other healthcare providers don’t even think to ask what a patient is using or taking to make themselves feel better. And so by not even asking, that sends a message that other treatments are worthless. And because of that, patients won’t even tell them what they’re using, and that’s an enormous barrier to care.

" MUSIC: Zuni In

24" Theresa: Our local hospital, they were indifferent to the idea of bringing in the traditional healings. But now that has changed. They allow traditional healers to come in. And if there is something that require, you know, like a fire being built or something, then a patient is given a pass to go home and take care of that.

?" MUSIC: (Zuni) Up for a beat

17" Theresa: The traditional practices that are used, the herbs and, uh, prayers do help them. It also helps them emotionally, mentally. A lot of times we see them depressed and after a ceremony you see them bounce back.

?" MUSIC: (Zuni) Out.

60" MUSIC: Break Music In.

60" Narration Break II: YOU'RE LISTENING TO HEART TO HEART, FROM PUBLIC RADIO INTERNATIONAL.

RACISM

" MUSIC: (Jazz) Up and under.

" Narration 36: WHEN DOES CULTURAL STEREOTYPING AND MIS-COMMUNICATION BECOME OUTRIGHT RACISM? REGINA DYER FEELS THE TREATMENT SHE HAS RECEIVED HAS CROSSED THIS LINE.

" Regina: I was there in the emergency room, you know, cause I was in bad shape. I had broke out. My face was swollen. I was stooped over because I couldn’t walk. And uh the doctor(s) would not admit me. He told me he could not justify admitting me. I mean it was terrible that he would let me leave that hospital.

" Narration 37: ASSUMPTIONS ABOUT WHO REGINA WAS WERE BASED ON HOW SHE LOOKED.

25" Regina: When I went up there I looked terrible. Because I had been sick. I...you know I couldn’t put my clothes on. My hair wasn’t combed at all. I looked like some bag person and I was Black. You know and he probably assumed that I was some single poor mom or something. Not too bright, you know. I think they think you’re looking for a place to stay. Or you want drugs or something you know.

6" Regina: It took me several times of just going back, going back. I must have went like six times you know.

16" Regina: I'm not homeless, OK? But all he could see was what I looked like and get me out of there. [laughter]. But why would you…. I mean what would make you do that other than the fact that I’m Black? I can’t...I can’t think of anything else.

" MUSIC: Fades out

58" Dinner Scene1:
" Ambiance: Kitchen sounds fade up. Run throughout scene.
Girl: What else you get cooking with that?
Regina: String beans.
Girl: You'all making gravy or something?

" Narration 38: REGINA DOES NOT FIT THE BAG-LADY STEREOTYPE. SHE'S COLLEGE EDUCATED AND SHE OWNS HER HOME, WHERE SHE LIVES WITH 3 OF HER 7 CHILDREN. ON SUNDAYS, THE WHOLE CLAN COMES OVER AFTER CHURCH TO FIX AND EAT A HUGE SUPPER. POTS ARE ON EVERY BURNER. AND PREPARATION TAKES HOURS, AS SEVERAL MAIN DISHES ARE PREPARED IN A SMALL, BUSTLING KITCHEN.

" Girls: Sing as they are cooking.
Girl: That’s my song.
Regina: I got them little Italian peppers.
Girl: I like the smell of them and the taste of them
Regina: Oh yeah. Save some of the seeds.
Girl: Makes your food smell good, even if it's nasty.
Girl 2: I said leave the seeds in there. The seeds is where the bell pepper flavor is.
Regina: Yeah. Save the seeds.
Girls: Sing.
Girl: Shake that booty
All: Laugh.
Ambiance: Kitchen fades out.

" MUSIC: Fades in for a sting under Regina.

5" Regina: They don’t know you, but they’ve already put you in a category you know.

MUSIC: Out.

" Narration 39: DISCRIMINATION AGAINST PEOPLE OF COLOR WHO NEED MEDICAL CARE HAS A SORDID HISTORY IN THIS COUNTRY.

20" Richard: The most notorious example was the public health studies done at Tuskegee University, in which people were told that they were being treated and taken care of for the syphilis, but in fact were allowed to die even though treatments became available for syphilis.

" Narration 40: DR. RICHARD PAYNE IS A NEUROLOGIST AND PALLIATIVE CARE DOCTOR AT MEMORIAL SLOAN KETTERING CANCER CENTER IN NEW YORK.

13" Richard: And that whole ethical atrocity of Tuskegee really resonates in African American communities as an example of racism, breech of trust by the system.

8" Norma: In my community, in the Puerto Rican community, women were used to test sterilization drugs.

16" Lavera: People were used like guinea pigs. It was an egregious abuse of science, and of medical care, and of our public health system. So it’s a legacy that affects many aspects of care today at the end of life.

" Narration 41: BUT THIS IS NOT JUST ANCIENT HISTORY.

23" Anne: The recent Institute of Medicine report documented that there are enormous health disparities in this country largely based on race. Many persons of color were denied access to critical care interventions, for example, ventilators or breathing machines and some of the most technologically advanced treatment.

14" Lavera: What the report showed is that if you are black, if you are elderly, if you are poor, and if you’re a woman, any of those categories, and god help you if you are crossing over all of those, you are at risk of getting substandard care.

20" Richard: I’ve seen many adolescents, particularly adolescent young men with sickle cell disease who are basically you know given a very hard time getting their pain dealt with, because the assumption is that they are drug seeking and sort of faking it to get drugs.

" Narration 42: IT'S NOT JUST YOUNG MEN WHO GET THIS KIND OF TREATMENT.

17" Regina: They think you’re a drug addict or something like that or you’re selling them. Because I was taking Oxycontin. And I think they assumed that I was, you know, smoked out or whatever. You know everybody is not on crack.

10" Regina: I’m an old lady you know. You think you’d treat me with a little more respect. And no, I’m not trying to stay high all the time. I’m actually in pain.

18" Lavera: It’s a very sad situation where a minority person has to convince a healthcare system that they need pain medication, and have to do that while they’re in pain and needing to overcome some negative stereotype about them.

" MUSIC: Out

Narration 43: AND THIS PROFILING CONTINUES AT THE PHARMACY.

18" Richard: A study done out of New York City showed that if you lived in a community that was predominantly minority and particularly on the lower end of the socioeconomic scale, that it was very likely that your retail pharmacy in your neighborhood carried no pain medicine.

17" Lavera: And when you asked the pharmacies why they didn’t carry that, the pharmacy’s response was well, I’m in a high crime neighborhood that people will rob me, that people are abusing these medications. But when they compared the police reports of thefts and crimes in those same neighborhoods, it didn’t match up.

" MUSIC: In

" Narration 44: TOO OFTEN, RACE AND POVERTY GO HAND IN HAND.

13" Lavera: I’m more and more convinced that this is an issue about money. And unfortunately, minorities are disproportionately of lower income than others. So...so, it’s sort of a double whammy.

21" Anne: Many poor people, because they may have unstable housing, they may not be able to get some of the in-home services that people who are at the end of life might receive. It’s pretty hard to provide Hospice care if you’re homeless; if you’re living under a bridge, or you’re living in some kind of shelter.

15" Richard: Many minority groups, African Americans in particular, are much more likely to be uninsured or under-insured and to not have full access to curative medical treatments.

35" Regina: The difference between having your own insurance and then being a MediCal uh recipient… they just don’t treat you the same. And I’ve had it both ways. With my good insurance, honey, they had a field day. I had a isotope type of thing done. Really sophisticated, high tech stuff. I had the endoscopy. I had that like three times, OK. And an assortment of CAT scans. I’m telling you they had a field day. MediCal, I have yet to have a scan. You have to almost be dead. [laughter]

MUSIC: Out

36" Dinner Scene 2:
Ambiance: Kitchen sounds in throughout scene. (Girls singing, under)
Regina: Diner-bero! Hey Dinero, go get Grandma's cup off the dinning room table.
Girl: Sings as she works in kitchen.
Regina: Find it? Oh think you. Such a lovely boy. Look at how he's carrying it. Thank you.
Ambiance: Kitchen sounds fade out.

" Narration 45: A LIFETIME OF HARD LESSONS IN DISCRIMINATION CAN MAKE ONE WARY OF DOCTORS AT THE END OF THAT LIFE.

7" Regina: A lot of us Black folks, we do not go to the doctor. It's just the way you're raised.

16" Norma: There is a deep sense of distrust in the healthcare system on the part of some communities of color, specifically African American and Latinos, because of what historically has happened to them.

36" Richard: For example, I was talking to one of my patients who was an elderly African American man with prostate cancer. And we were talking about end of life care, whether we should refer him to a Hospice program. And he stopped me and he said, “Now, why are you talking to me about this? I want to make sure that you’re not shunting me off to a Hospice because this hospital doesn’t have an interest in treating me because I’m black and I’m… I’m not wealthy. I want to make sure that you’re not saying my life is little more disposable than someone else’s."

10" Norma: People might think, "First, you experimented with me. You denied care when I needed it. And now that I’m dying, you are again, denying care to me."

MUSIC: In

" Narration 46: THIS DISTRUST AFFECTS DECISIONS ABOUT ONE'S TREATMENT.

9" Lavera: African Americans, tend to underutilize services such as Hospice. I think they want to have aggressive, intervention care all the way down to the very end.

29" Richard: There is this tension about buying into a agenda that quote, "helps me die better" when I really want to be focused on an agenda that gives me full access to medical treatment? You know, “Let’s talk about bone marrow transplantation, high dose chemotherapy. Why would we want to put pain management, palliative care, and DNR discussions on the table when we don’t have full access to these other things?”

5" Lavera: There’s no question in my mind that until we deal with the race issue in America, none of these issues will be resolved.

MUSIC: Slow fade out.

29" Dinner Scene3:
Ambiance: Kitchen fades in.
Girl: Go save your seat at the table
Girl 2: Yeah.
Girl 3: There's a fork on the big table.
Girl 4: Ready?
Regina: We thank you Lord for the food that you have provided, for the nourishment of our bodies. Use it to sanctify us, oh Lord, and to strengthen us in our bodies. And bless those that are without. In Jesus' name, Amen.
All: Amen
Boy: Amen!
Ambiance: Fades out.

ACCESS Pt. III

0” Ambiance: Workshop ambiance.
Bring up under next narration. Run in background throughout scene.

" Narration 47: IN ORDER TO GET BEYOND CULTURAL MISCOMMUNICATION IN THE CARE WE GIVE TO THE DYING, WE NEED TO START TALKING TO EACH OTHER. THE ACCESS WORKSHOP BRINGS TOGETHER SOCIAL WORKERS FROM ALL CULTURES.

0” Ambiance: Workshop ambiance.
Bring up under next narration. Run in background throughout scene.

22" Woman [at Access workshop]: I’m a Latina and I live in the Mission District. When I came to this country at age eleven……
Woman [at Access workshop]: I am a Chinese from Hong Kong. And I came here when I was nineteen. So I used to live…..
Woman [at Access workshop]: I’ve always questioned, “What is being Caucasian? What is being American? What is being White?”
Woman [at Access workshop]: Over there everybody’s from one culture. We speak the language……

" Theresa Kwong [at Access workshop]: In order to learn about other people, you have to learn about your own culture.

" Narration 48: THIS IDEA IS CENTRAL TO THE APPROACH TAKEN BY ACCESS.

17” Norma [presenting at Access workshop]: Page 12. "What's the first memory of someone dying in your family? What were the rituals, practices or behaviors that your family observed at that time." OK? And each one is going to have 5 minutes…..

60" Man [at Access workshop]: Well, the first memory of somebody dying was my Grandmother in 84 during Christmas eve. Um. The men weren't allowed to cry. And I remember I didn’t cry. Instead there was the bottle that you drank from. (light laugh.) So, some of the rituals and practices and behaviors that my family observed at that time… I would say, a lot of alcohol consumption. (laugh).
Woman [at Access workshop]: I took care of my grandfather and he passed away when he was 94 years old. And the shock for me was that in El Salvador we can take the body back to the home after they die. And we clean them, we bathe them, and we put the garment that they like to wear. It’s not like here in the United States where you can not bring the body home and do that. So for me it was a shocking experience.

EXTRO

" Narration 49: THE WORK OF ACCESS, OF SELF HELP, OF THE ZUNI HOSPICE IS JUST A BEGINNING.

MUSIC (Theme music) In

" Narration 50: AS DOCTORS AND NURSES; AS PATIENTS AND FAMILIES; AND AS A WHOLE SOCIETY WE NEED TO FIGURE OUT HOW TO ENSURE THAT EVERYONE RECEIVES THE CARE THEY WANT AND NEED AT THE END OF THEIR DAYS.

9" Bruce: Cultures do come into conflict. And the idea is not necessarily to avoid the cultural conflict but to understand what’s going on and try to address it.

11" Anne: We act as if there is one definition of good end of life care. And I would argue there is no one definition In the end, it’s going to be many definitions.

17" Norma: It’s like a dance. It’s like coming together and finding middle grounds. I like to say that reality is where your perspective and my perspective intersect. It’s not just mine or yours. It’s just that middle point.

MUSIC (Theme music) Out

22" Regina: I said, doctor, doctor M.D., can you tell me, tell me, tell me what’s wrong with me. He said, yeah, yeah, yeah, yeah, yeah. Something like that. And he tell him something about, um, something about dancing or something. I don't remember. but I thought it kind of fits my situation. [chuckle].

MUSIC: Up

" Narration 51: HEART-TO-HEART: CARING FOR THE DYING. RESPECTING DIVERSITY. THIS PROGRAM WAS PRODUCED AND DIRECTED BY CLAIRE SCHOEN. MUSIC BY STEPHEN SAXON, DAVID NORFLEET, JIM QUINN, FERNANDO CELICION, WEI-SHAN LIU AND THE FAITH PRESBYTERIAN CHURCH CHOIR. 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". IN MEMORY OF REGINA DYER AND MRS. SANG. I'M CLAIRE SCHOEN.

" MUSIC: Up and out

TOTAL TIME: -58'00"

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