"EXCEL"

Bear Creek Three
A Retreat Exploring End of Life Care
Asheville, North Carolina
November 2-6, 2001

“Wading in Cultural Waters”

I recently had the privilege of attending my third brain-storming retreat for hospice and palliative care physicians, nurses, counselors, bio-ethicists, chaplains and educators from across the country. Founded by New Hampshire hospice physician, Patrick Clary, the first two Bear Creek Retreats were held in Montana, benefiting from Dr. Ira Byock’s expertise (see Dying Well) and the Missoula Demonstration Project, which is tracking attitudes and practices of death and dying for fifteen years. They are looking for a generational change in knowledge and reality. Out West we interviewed women from the Hmong (Asian, Laotian) community and the Crow Tribe about their customs and the collisions with modern medicine, as described in Anne Fadiman’s book The Spirit Catches You and You Fall Down.

This year our core group journeyed south of the Mason-Dixon Line to seek answers to a national reality-- people of color generally do not use hospice services—and we (the white providers) don’t know why. Dr. Bruce Kelly had brought members of his team to Montana twice and now we were in their community to listen and learn about a deeply spiritual culture still suffering from 300 years of slavery and healthcare inequity.

As a woman from Vermont, the “whitest state in the nation,” I was unsure of any contribution I could make or take home from such an important and charged event. But years ago I had read, “The Life and Times of Miss Mildred,” a composite portrait of a dying elderly black woman of the south, by Annette Dula, our keynote bioethicist from the University of Colorado—and I had been moved to tears. So I was drawn to this journey, well aware of my “White Privilege…the Invisible Knapsack,” that I carried, and the article so titled by Peggy McIntosh, which I brought to share.

“I’m sorry, Bruce. I can’t remember what you are calling this retreat! My hospice team back in Vermont kept asking why I was going to North Carolina—and I just blurted out, “We’re going to explore the racism of the well-intended!”

Stunned silence, then laughter broke the tension, now that this inadvertent evil had been named. Bruce told me it couldn’t have been so named by a white or black person from the south. It would be too emotionally charged—full of blame or shame. This was the necessary contribution of a Yankee hospice artist, and so this became the often referred to sub-title of our endeavors.

First, the facts—Non-whites in Asheville suffer 17.3% more heart disease, 39% more cancer, 76% more strokes, 219% more diabetes, 223% more kidney disease, 266% more homicides, 625% more AIDS deaths and 200% more maternal deaths. Non-whites are four times as likely to have jobs with no health care insurance. And only 22% of Latinos have a primary care physician, whereas 84% of whites have their own doctor, thus presented by Tom Plaut, Ph.D, of Mars College.

The clincher was presented by gerontologist, Terri Payne, from Harlem. If you are a white man and you break your femur, you have a 75% chance of being medicated for pain in the hospital. But if you are a man of color, you have only a 30% chance of getting any pain medication! What is going on here? Is it deliberate? Is it subconscious? Why isn’t this known and why aren’t we screaming about this in our culture? Does inequity in healthcare necessitate disparity in end of life care? “Is palliative and hospice care another code word for less care again?”

The history of access to formal healthcare for blacks in Asheville was detailed through slides of old houses that served as the first clinics, with integration in the city hospitals only occurring in the 1950’s. Presented by Randall Richardson, Mission St. Joseph Hospital’s first black administrator and planner, this history is still real for the middle aged and elderly who remember not being able to go to the hospitals. And subtle and not so subtle inequities persist. In a 900-bed hospital there are no hair and skin care products available on the cart that goes bed to bed, which are appropriate to the 20-40% of the patients who are of color. In a religious community with 85% of the population attending church regularly, the hospital has twelve paid chaplains, and all are white.

We learned about the four strategies that white healthcare professionals use to avoid talking about racial injustice. Denial and disbelief is first, such as the response of the public to the revelation of the government’s Tuskegee Syphilis Studies. Black men were used as unsuspecting guinea pigs, men who thought they were being treated for disease but were in fact given placebos to study the effects of non-treatment or experimental drugs. This strategy is often followed by marginalizing—“It’s not the BIG picture…This is not OUR issue…This could never happen NOW.” Avoidance by way of “Me too stories” attempts to dilute the injustices with the argument, “It’s not race—it’s class issues, etc.” And finally there is our SILENCE—our refusal to discuss, address, or respond to these facts.

We learned from Kimberly McCoy-Daniels of the Tuskegee University National Center for Bioethics in Research and Health Care that they are trying to establish community trust in the wake of the criminal syphilitic studies of the’30—70’s. That community responds, “We’re tired of being surveyed to find out how poor we are. We know how poor we are! When are you going to DO something about it?”

And we didn’t just talk about these issues we experienced them. There were heated confrontations about co-opting black spirituals, misrepresenting the diversity of a variegated culture with singular stories and stereotypes, and angry outrage that Rodney King’s assailants were let off by an all white jury (who knew?!). Out tense fingers were able to play with colored clay and pipe cleaners-- making symbols of explosions, love and forgiveness as we confessed, accused, and listened to each other.

In this context I was able to tell my story for the first time—about how my brother was shot in the head by a black man while walking his dog two years ago. After getting the news, I drove and cried from Vermont to the ghettos of Jersey City, and I felt every emotion--except anger. This black man, who looked like he was 45 but was only 18 years old, was clearly as much a victim as my brother. Two years earlier I had experienced a National Hospice Organization four-hour training on “The Color of Fear,” and I had been moved through the fear and anger by this video and the discussions that followed. I had that tool to fight an easy hate, when it was my turn to hurt. Education does make a difference.

And we all realized that the “color blindness” we liberal whites were raised with in the 60’s and 70’s—which was such an improvement over the destructive racism and incapacity that came before—this color blindness is not good enough anymore! We have got to move towards competence and cultural proficiency if we want a just society.

And we laughed and laughed and healed a little together too. We went to the oldest black cultural center in Asheville, the YMI, and toured the exhibit on African –American Homegoing Traditions called “The Last Miles of the Way, 1890-Present.” Hosted by director, Oralene Simmons, large simulated gravestones articulated the ways slaves buried their dead, paid their respects, and mourned. Did you know that even today blacks are never buried on Friday, because Fridays were paydays and drinking nights for the Whites. And Fridays were when the lynchings took place and it wasn’t safe to be out. This history is still alive and in church.

We then enjoyed a community soul-food dinner, followed by a celebration in the homegoing tradition (instead of a funeral) with the Hill Street Baptist Church led by their minister, Luella Whitmire, who is truly anointed and dances with God! It was enough to make this Yankee want to go to church! I’m so used to hearing that the meaning of death is finality, separation, and tragic loss. But the venerable Dr. Charles Mosley made it clear in his sermon that the meaning of death to black people is above all FREEDOM! Death was the only freedom available for centuries, and in this freedom was REUNION for families often separated in slavery. And this death was RELEASE AND REWARD! Halleluiah!

Sandra Bertman, U.Mass Medical School Humanities Professor, brought artistic images from Africa and America that humanized the statistics of the AIDS epidemic and illuminated the role of the arts in medicine by saying, “The pain of loss is reduced as the evidence is preserved.” I followed with paintings and stories from my hospice patients, which illustrated exactly that. Thus we returned to end of life care—truly caring for one person at a time.

We also explored the white culture (Yes! There is a white culture) of medicine that sets the agendas, allocates the resources and designs the educational models, all in the name of benevolence, but which is in fact paternalistic. Moving towards justice in healthcare means improving access that is affordable, accommodating cultural differences and diversifying and educating the workforce. That means moving the mammography and screening clinics from the malls to the housing projects!

And finally, Annette Dula closed the retreat by shooting holes in all of our hospice theories, which we have held so dear for twenty years!

These are the assumptions to challenge about end of life care:

People want to die with dignity.
People of color HAVE their dignity. They have had to protect it internally for hundreds of years. It is not dependent on how they are treated. It is not negotiable, not a value to be traded upon. What they want is RESPECT.

Quality of life is better than quantity of life.
People of color know that they live statistically shorter lives than whites. This has always been true. Therefore QUANTITY OF LIFE IS QUALITY OF LIFE.

Unwanted and unnecessary care compromises dignity.
Dignity cannot be compromised by care. Longevity is the higher goal.

When care is “futile,” treatment should be discontinued.
Futile is a value judgment and interferes with the deep belief that we should die “In God’s Time.” Therefore palliative and hospice care means giving up before God’s ready.

Advanced directives are planning tools. Everyone should fill one out.
This is something white folks do (and only 20% of them!). People fear it will lead to inadequate care and treatment, and will limit autonomy.

Communication between patients & professionals improves end of life care.
The SUPPORT Study proves this is not true. Some cultures prohibit the discussion of death. Fear and well-earned distrust persists-- race determines care.

Properly trained health care professionals will give adequate pain meds.
The U. of Chicago study of femur fractures cited above = 75% white men treated for pain and 30% non-white men treated for pain in hospital with long bone fractures.

-Physician assisted suicide increases patients’ autonomy.
With a long history of blacks being valued at 3/5 the value of a white man, (and women not at all), life is the only possession. Blacks fear this as another move toward elimination (see programs for involuntary sterilization--Tuskegee). AIDS is seen as another genocidal situation. Physician Assisted Suicide is against God’s wishes.

Finally, suffering is seen as part of life for people of color. They ask, “What’s the BIG DEAL?” Pain is expected. It always has been. Inner dignity and intense spirituality and religion have been the medicine. These above assumptions are based on white values and norms. We need to re-think advanced directives, move toward healthcare proxies, and learn to have the conversations, not the papers. And we need to change the racism in the allocation of health care resources and in our country as a whole.

“Racism is a hydra-headed monster.” Frederick Douglas “A just community is one in which blessings are mutual.” Socrates

My extreme gratitude and admiration go to Randall Richardson and Bruce Kelly for embarking on the dangerous and necessary mission of Bear Creek Three and exhibiting the nature of true leaders: “When things go wrong, you move to the front and take the shots. When things go well, you move to the back and applaud.”

Epilogue

When I returned to Vermont, I could not stop talking about the events and feelings of wading in the Asheville waters, and simply telling the above has had immediate effects on the hospice world I live in. My hospice team was so intrigued that cultural competency will become part of our annual skills fair in which we teach each other advanced practices.

At our hospital’s Perinatal Bereavement task Force meeting, the response of headnurse was, “We don’t see many people of color. It’s not a problem.” But then they admitted just last week a Jewish baby died and they could not find a box that did not have a metal hinge. Who knew metal was forbidden? They used one of the memory boxes after much panic and flurry. So now we are going to have a focus group of Bosnians, Jews, Congolese, Tibetans, and anyone else we can find in Vermont to explore cultural practices in birthing, breast-feeding and dying.

My son was hit in the eye with a Lacrosse ball, breaking the orbital bone and requiring surgery. It went well and we got the usual hospital survey asking many quality-of-care questions. I dreamed about the survey—what if they asked, “Are you a person of color? Did you receive culturally appropriate care? Was you pain control and symptom control adequate?” We know from the Missoula Demonstration Project that you can change a culture simply by asking the questions over and over. I called my Bear Creek colleague, Jean Montana, who will make this part of her quality assurance job in New Hampshire.

“When spider webs unite, they can tie up a lion!” African Proverb
 

Respectfully submitted by
Virginia L. Fry, Director
Hospice & Palliative Care Council of Vermont
Bereavement Coordinator
Central Vermont Home Health & Hospice

Editorial for The Point Radio Stations of VT, NH & NY, 1/11/02

“Wading in Cultural Waters”

I recently had the privilege of attending my third brain-storming retreat for hospice and palliative care physicians, nurses, counselors, bio-ethicists, chaplains and educators from across the country. This year our core group journeyed south of the Mason-Dixon Line to seek answers to a national reality-- people of color generally do not use hospice services—and we (the white providers) don’t know why. Dr. Bruce Kelly brought us to his community of Asheville, North Carolina to listen and learn about a deeply spiritual culture still suffering from 300 years of slavery and healthcare inequity.

As a woman from Vermont, the “whitest state in the nation,” I was unsure of any contribution I could make or take home from such an important and charged event. But I was drawn to this journey, well aware of the “Invisible Knapsack of White Privilege” that I carry. My hospice team in Vermont kept asking why I was going to North Carolina—and I finally blurted out, “We’re going to explore the racism of the well-intended!” And this became the sub-title and repeated theme of our endeavors.

First, the facts—Non-whites, people of color, in Asheville, NC suffer 17% more heart disease, 39% more cancer, 76% more strokes, 219% more diabetes, 223% more kidney disease, 266% more homicides, 625% more AIDS deaths and 200% more maternal deaths than whites. Non-whites are four times as likely to have jobs with no health care insurance. And only 22% of Latinos have a primary care physician, whereas 84% of whites have their own doctor.

The clincher was this--If you are a white man in Chicago and you break your femur, the long bone in your leg, you have a 75% chance of being medicated for pain in the hospital. But if you are a man of color, you have only a 30% chance of getting any pain medication! What is going on here? Is it deliberate? Is it subconscious? What are we assuming? Why isn’t this known and why aren’t we screaming about this in our culture?

We learned about the strategies that we use to avoid talking about racial injustice. Denial, disbelief, avoidance and then there is our SILENCE—our refusal to discuss, address, and respond to these facts.

But we did talk about them, for five intense days. And we didn’t just talk about these issues--we experienced them. There were heated confrontations about co-opting black spirituals, misrepresenting the diversity of a variegated culture with singular stories and stereotypes, and angry outrage that Rodney King’s police assailants were let off by an all white jury. Our tense fingers played with colored clay and art materials to express the pain and search for solutions. We made symbols of explosions, love and forgiveness as we confessed, accused, and listened to each other.

And we laughed, and healed a little together too, as we went to the oldest black cultural center in Asheville, and toured an exhibit on African –American Homegoing Traditions. Did you know that even today blacks are never buried on Friday, because Fridays were paydays and drinking nights for the whites and thus when the lynchings took place and it wasn’t safe to be out. This history is still alive and relived in church on a weekly basis.

The venerable Dr. Charles Mosley made it clear in his sermon that the meaning of death to black people is above all FREEDOM, and in this freedom was REUNION for families often separated in slavery. And thus death means RELEASE AND REWARD! Halleluiah!

And we all realized that the “color blindness” we liberal whites were raised with in the 60’s and 70’s—which was such an improvement over the destructive racism that came before—this color blindness is not good enough anymore!

As Socrates said, “A just community is one in which blessings are mutual.”

We need to change the racism in the allocation of health care resources and in our country as a whole by improving access that is a

of cultural differences, and diversifying and educating the workforce. That means looking everywhere for inequities.

“Racism is a hydra-headed monster,” said Frederick Douglas

When I returned to Vermont, I could not stop talking about the events and feelings of wading in the cultural waters of Asheville. My hospice team was so intrigued that cultural sensitivity will become part of our annual skills fair. Our hospital’s birthing center will have a focus group of Bosnians, Muslims, Jews, Congolese, Tibetans, and anyone else we can find in Vermont to help us to explore cultural practices in birthing, breast-feeding and dying.
And I dreamed about the standard hospital survey. What if they asked, “Are you a person of color? Did you receive culturally appropriate care? Was your pain control and symptom control adequate?”
We know that we can change a culture simply by asking the questions over and over—and we must.
Or as the African proverb suggests: “When spider webs unite, they can tie up a lion!”

I’m Virginia Fry and that’s the way I see it!

Ginny Fry is the Director of the
Hospice & Palliative Care Council of Vermont and the
Bereavement Coordinator for
Central Vermont Home Health & Hospice