What does this ongoing pandemic have to do with hospice care?
What does the recent tragic death of George Floyd and Black Lives Matter have to do with hospice care?
As a health care crisis, the pandemic has obvious connections to hospice. Covid-19 has triggered a flurry of challenging public and personal responses such as isolation, social-distancing, trust/distrust in medical experts, having/not having funerals, and how we grieve.
But mentioning the anguished killing of another black man on the streets of an American city by a peace officer in the same sentence as hospice is less obvious. The eight minute and forty-six seconds leading to George Floyd’s last breaths—a recording I can’t watch all the way through—rightly inflamed a national response. Black Lives Matter (“founded in 2013 after the acquittal of Trayvon Martin’s murderer . . .” according to their website) has never been out of the 24/7 news cycle since its start. But what happened to Mr. Floyd, because of that knee to his neck, put Black Lives Matter back into the gut-wrenching daily headlines.
The political headlines?
Isn’t our fury (or complacency or denial) about racial injustice a social, cultural, and political concern? But not related to hospice? Or health care?
Some would think that.
Covid-19, as with so many other current and prior health care-related challenges, has again revealed the disparity in how people of color, along with those more vulnerable like the elderly or the poor, are treated. Treated differently. A May 30, 2020 National Public Radio (NPR) article reported that “African-American deaths from COVID-19 are nearly two times greater than would be expected based on their share of the population. In four states, the rate is three or more times greater.” While this research is early and incomplete, occurring while the pandemic continues to burn across the globe, the NPR data also reveals, “that in 32 states plus Washington D.C., blacks are dying at rates higher than their proportion of the population.”
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Why is it so difficult for us to openly, honestly talk about the things that matter the most?
Some might dismiss this as a tenuous connection, but I believe the United States’ 400-year history of racial injustice, and our unwillingness to deal with dying and death, have a common thread.
One of the most consistent statistics in hospice is how many are under the care of a hospice agency for mere days. Whether studying the oldest or newest data, 25-30% of hospice patients will enter hospice care and die within a week. Seven or less stunningly quick days. Why?
Maybe because . . .
- The patient wanted to try one more (and then one more) “life-saving” treatment for the fatal illness?
- The patient refused to discuss his or her dying?
- Some or all of the family wanted to try one more (and then one more) “life-saving” treatment for the fatal illness?
- Some or all of the family refused to discuss the dying/death of their loved one?
There are a host of related reasons to the Whys?:
- We hate losing control and refuse to discuss anything making us look vulnerable.
- We don’t want to be a burden and therefore remain silent.
- We are randomly superstitious and fear a conversation about death invites death.
- We are part of a dysfunctional family and never can communicate about, well, anything.
- We refuse to “give up.”
Regardless of the responses, too many wait too long to address dying and death. At that point, family members or friends are often making an anguished decision without knowing what they think or want for dying loved ones . . . who also may not know what they think or want.
Why do we avoid what is so obvious: our mortality?
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In 1619, the first slaves were dragged ashore and taken to Jamestown, Virginia. Over two centuries later, the gruesome American Civil War was fought. During those four years, it was state against state, family against family, all involving literal black-and-white issues that tainted every person, household, community, region, and religion in our nation. That war ended in 1865 . . .
Or did it?
The earliest version of the Ku Klux Klan started in 1865. Perversely, the KKK is not a white supremist footnote peculiar to the 19th century, but an ongoing, pathetic reality. A century after the Civil War, significant civil rights (1964) and voting rights (1965) finally became part of our national law. And though a painfully long list of other dates or names could be mentioned, on 2020’s Memorial Day, when George Floyd gasped his last breath, he became another victim linked to those first slaves sold to a white settler in colonial Jamestown.
Reviewing the history of racism is “safe.” It’s just the past . . . and yet it is not.
Why can’t we talk about the deepest wound in the soul of our nation?
One of the frustrating decisions for a hospice involves “people of color” on the staff. What happens when a patient or family member—who has been told by the hospice that their needs and requests will be honored—declares they don’t want a particular “kind” of person in their home? Simply, and shamefully, if a nurse or home health aide or other staff is “black” or “brown,” they don’t want them around. Racism. What do you do?
Racism, in its subtle to blunt forms, in its cruel to fatal ways, is a gaping wound.
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I have no easy solutions or quick answers to how, long before needing hospice care, people can more openly share about their fears and hopes when nearing life’s end. Likewise, with racism, there are no easy solutions or quick answers to our overt (and covert) prejudice.
But the wound festers.
And it’s killing us.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)
Photo above: The March 19, 1965, civil rights march across the Alabama River, the start of a 50-mile march to Montgomery, Alabama, with Martin Luther King Jr. waving from the front row. | AP