Camille’s dark glasses disguised a black eye she suffered falling from bed, cowering to take cover. Someone fired shots near her bungalow’s back window again, a routine rhythm of her slice of Chicago that she has heard for years now.
The 82 year old walks with a cane but carries a brick in her purse. She’s not afraid to use it on a badly behaving neighbor.
Most would think she has more pressing priorities than the event where we met, a forum to consider future health preferences- an end of life initiative at one of the city’s largest African American churches.
But Camille refuses victimhood in a life amidst violence and tries equally hard to avoid such in death. Circumventing suffering at her most vulnerable time shouldn’t be such a chore. For most who look like her, it has been. She’s seen this scenario up close through the final hospitalizations of family and friends.
She didn’t need the recent Kaiser Family Foundation study to spotlight the critical reason why blacks are dying worse than an American population that isn’t dying well.
She already knew.
Older blacks are less likely to have discussed and documented their care wishes. Doing so is the most surefire way to receive the care we desire. Only 19 percent of blacks 65 and older have documented their wishes, compared with 65 percent of whites. Older blacks are half as likely to have named someone to carry out their wishes if they cannot.
It’s one racial disparity that divides us further, even in death. Within health care, blacks are too often simply ignored. African Americans aren’t dying well because no one bothers to ask them about the care they prefer.
I’ve cheered on the front lines of a radical cultural shift unfolding as baby boomers age, watch parents die, and determine their own deaths should be done differently.
The movement has been one of the whiter and wealthier. My work in end of life education happens in community settings- senior centers, churches, libraries and the like- primarily because conversations aren’t happening enough in doctors’ offices.
Only one in ten of the roughly one thousand black seniors I’ve talked with in the past year say their physician has broached the topic. Kaiser’s number is higher: 33 percent. But it is still shameful after a long-fought policy achievement to incentivize physicians by reimbursing end of life discussions.
The majority of seniors I talk with are healthy, able to venture- often alone- to community spaces. They are motivated to address the care they desire while simultaneously hoping they won’t need it for another decade or two.
But among ill African Americans, planning also remains unaddressed. One study among advanced cancer patients revealed that blacks (47 percent) were significantly less likely to have participated in advance care planning than whites (80 percent).
Although Camille’s situation seems less than secure, home is where she would like to die. This wish is akin to that of the majority of Americans. Among African Americans, only ten percent report hoping to die in a hospital. Despite this, blacks die as inpatients more often than whites.
As inpatients, African Americans are less likely to receive adequate pain assessment and more likely to experience poor physician communication about care choices. Though the reasons for this communication challenge are many and complex — like race-based bedside assumptions — a main factor in these interactions is that the discussions started so late. If started earlier, patients might be more satisfied that they weren’t dying in the hospital in the first place.
Certainly, all of us have the responsibility to advocate for ourselves in our health choices. Patients like Camille can start this conversation with their provider first.
Unfortunately, too often patients find an uncomfortable physician when the dialogue dances close to death. In a large survey of physicians, close to 86 percent found it “very challenging” to conduct end of life discussions with patients whose ethnicity was different than their own.
Such community efforts here in Chicago and others nationwide will continue out of necessity. But what a boost it would be to these efforts if they followed a brief physician-patient dialogue somewhere in our ever specialized spectrum of care.
A few weeks after I met Camille, she brought three of her relatives to a similar program at a different venue. She wants everyone close to her to know her wishes and to take steps to declare theirs. In all, 17 loved ones have come to hear Camille’s wishes and consider their own.
We need a health care system willing to listen, too.
Randi Belisomo is president and co-founder, Life Matters Media.
Image credit: Shutterstock.com