Few gaps in fine New York Times look at hospice and common fears among African-Americans
Let's face it. The religion-news beat is amazing. I have never understood how many journalists consider this a fringe topic that doesn't deserve mainstream coverage.
Decades ago, I interviewed scores of newspaper editors for my graduate project at the University of Illinois at Urbana-Champaign and you want to know the two most common reasons they gave for avoiding religion? Religion was (a) boring and (b) too controversial. That's the problem, you see, the world is just full of boring, controversial religion stories.
I think any professional who works on this beat for multiple decades -- which describes all the current GetReligionistas -- lives in a state of amazement at how complex new stories, and new angles on old stories, just keep showing up.
That's how I felt reading a very interesting New York Times feature about the struggle to promote hospice in African-American churches. Once again, it is amazing what the Times can do when a religion topic doesn't touch on the Sexual Revolution and, thus, clash with the core doctrines of Kellerism. Here is the key summary material near the top of this fine story, which opens with tragic events in the lives of the Rev. Vernal Harris and his wife Narseary, who have lost two sons to sickle cell anemia:
Hospice use has been growing fast in the United States as more people choose to avoid futile, often painful medical treatments in favor of palliative care and dying at home surrounded by loved ones. But the Harrises, who are African-American, belong to a demographic group that has long resisted the concept and whose suspicions remain deep-seated.
It is an attitude borne out by recent federal statistics showing that nearly half of white Medicare beneficiaries enrolled in hospice before death, compared with only a third of black patients. The racial divide is even more pronounced when it comes to advance care directives -- legal documents meant to help families make life-or-death decisions that reflect a patient’s choices. Some 40 percent of whites aged 70 and over have such plans, compared with only 16 percent of blacks.
Instead, black Americans -- far more so than whites -- choose aggressive life-sustaining interventions, including resuscitation and mechanical ventilation, even when there is little chance of survival. The racial gaps may widen after January 2016, when Medicare is to begin paying physicians for end-of-life counseling. In 2050, blacks and other minorities are projected to make up 42 percent of people aged 65 and over, up from 20 percent in 2000.
And as if that isn't enough, there is this poignant note:
At the root of the resistance, researchers and black physicians say, is a toxic distrust of a health care system that once displayed “No Negroes” signs at hospitals, performed involuntary sterilizations on black women and, in an infamous Tuskegee study, purposely left hundreds of black men untreated for syphilis.
Now, reporters who have covered religious issues linked to death and dying -- especially the intense, highly personal conversations that lead to advanced care directives -- can sense why this is such a powerful story. You see, for millions of Americans in all kinds of pews, the involvement of clergy is the difference between an experience that enhances human dignity and one that, well, has hints of a death panel.
Many government officials don't seem to get that. Yet this reality is at the heart of this Times report.
This brings us to what I believe is one of the only true religion ghosts in this story. Please read this passage carefully:
Federal policies surrounding hospice also arouse suspicion in black communities because Medicare currently requires patients to give up curative therapies to receive hospice benefits. That trade-off strikes some black families, who believe they have long had to fight for quality medical care, as unfair, said Dr. Kimberly Johnson, a Duke University associate professor of medicine who has studied African-American attitudes about hospice.
Dr. Johnson said her black patients were more likely to believe there are actual religious prohibitions against limiting life-sustaining therapy, and that suffering can be redemptive, or “a test from God.” And those beliefs, she added, were “contrary to the hospice philosophy of care.”
But some doctors and clergy members are trying to use church settings to reshape the black community’s views, incorporating the topic in sermons, Bible study groups and grief and bereavement ministries.
Dr. Robinson, who is black and a daughter of Tennessee pastors, has been helping pastors develop faith-based hospice guidelines. She tells them, “God can work miracles, yes he can, but even in hospice.”
Now, if you know anything about the history of hospice care in most communities, you know that the Catholic Church has often played a crucial role in its development. Is there any faith group that has more intense, more developed, doctrines linked to death, dying and the potentially redemptive elements of suffering than Catholicism?
In my experience, the more ancient the form of faith, the more likely it is to embrace hospice care. In other words, Catholics and many other believers who embrace hospice care are people who reject euthanasia, but strive to relieve pain while allowing the dying to remain at home whenever possible, surrounded by loved ones and other believers.
I once taught a seminary course on concepts linked to what many call the "good death," as opposed to a commercialized and hospital-dominated death. I found striking parallels between the practices in some Catholic, Orthodox and Mennonite communities. Years later, I wrote an "On Religion" column about one community linked to Mennonite traditions. Here is the top of that column, which I think is relevant to how the Times piece ends:
Johann Christoph Arnold doesn't mince words when describing his mother's death.
The matriarch of the Bruderhof community learned she had cancer of the lymph nodes late in 1979 and her condition rapidly deteriorated, accompanied by tremendous pain. After decades of serving others, she also found it hard to be an invalid who needed constant care. Still, there were transcendent moments. Throughout her five-month ordeal, children gathered to sing hymns and pray at her bedroom window.
"Just hearing their voices had an almost magical impact on her -- physically and spiritually," said Johann Christoph Arnold, a writer and social activist who now serves as senior elder of the eight Bruderhof communes in the U.S. and England. "Her face would radiate the love they were giving her. Some of her last words were, 'The children. The children.' " ...
No one found it strange that children found inspiration in the dying days of an elderly woman. No one found it strange that she took comfort in the fact that her life and death inspired others.
Yes, some Mennonites may reject some forms of modern pain relief. They often have their own traditions for how to deal with that. I have learned that it pays to be careful, and to avoid over simplifying things, when dealing with the Amish and Mennonites.
However, consider the similarities between that scene the experiences of the Harris family as they lost a second son -- age 33 -- to sickle cell disease.
The agony of their son Paul’s death in a hospital room informed their treatment decisions when their next son, Solomon, became gravely ill. When his doctor conceded that blood transfusions were of little help, Solomon assented to hospice care in his parents’ home. If he was going to be robbed of his future, Solomon would not, his parents decided, be robbed of a good death.
As his health failed, nurses from the hospice in Buffalo managed his pain and bathed him tenderly. A social worker helped the family grieve and counseled his young children. All the while, parishioners from his parents’ church visited Solomon, amazed to find that hospice was not the grim banishment they had envisioned.
“One of the members said, ‘I thought you were going to put Solomon in hospice,’ ” Mrs. Harris recalled. “I said, ‘We did.’ ‘Well, when is he going?’ I said, ‘They come here.’ ‘They come to your house?’ ‘Yeah, they’re taking care of him right here.’ ”
There was even time for reflection, as Solomon wrote in a poem called “After Life.”
“Fear death?” he wrote. “No, I await death.”
So as I said, this is a striking and deep story about a topic that I must admit I knew nothing about, in terms of how hospice is viewed in many black churches. But as is so often the case in religion coverage, there were links to the past that could have been briefly mentioned.
In other words, the "good death" is an ancient faith concept, one that is being rediscovered in many modern settings. That connection could have been at the heart of this story.