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End-of-life care, viewed in stark black and white

Many African Americans' reservations about hospice may be rooted in mistrust and religious beliefs.

February 06, 2006|Hilary Waldman | Hartford Courant

WHEN a visiting nurse suggested that Earleen Jackson consider hospice care, the 68-year-old woman was wary.

"At first I thought they wanted me to come to hospice so I could die here," said Jackson, who was diagnosed with advanced pancreatic cancer in June. Her son had a similar reaction when she told him about it, the New Haven, Conn., woman recalled.

The Jackson family's suspicion about hospice and palliative care is not uncommon among African Americans.

When the Rev. Kenric A. Prescott invited members of his largely retired flock to a series of educational sessions on advance planning and hospice care at his Union Baptist Church in Hartford, Conn., only a few showed up. And those who came already had thought extensively about their mortality.

For Prescott, it was a classic case of preaching to the choir.

The apparent resistance of some African Americans to even talk about end-of-life options seems to reflect yet another national chasm between whites and blacks when it comes to access to healthcare.

Recent statistics from the National Home and Hospice Care Survey show that 84% of hospice patients are white, while 8% are African American. Another study suggests that hospice use among African Americans is higher in cities with large minority populations, but blacks still appear to get less end-of-life palliative care than do whites.

"They are suffering as a result of not being able to receive these services," said Prescott, who is working with VNA Health Care, a large provider of hospice care in the Hartford area, to help African Americans make informed decisions at the end of their lives.

Karen Bullock, a researcher at the University of Connecticut School of Social Work, has been studying end-of-life choices among African Americans since her mother was diagnosed with advanced lung cancer seven years ago.

When her mother decided to discontinue chemotherapy and refused radiation, hospice would have provided a bridge to her death, offering pain relief and emotional and spiritual comfort when a cure was no longer possible. But Bullock didn't even suggest it.

Hospice offers care for people whose diseases can no longer be cured and who are expected to live for no more than six months. The care is designed to make the dying process as comfortable as possible by providing medical, social and emotional support to the patient and the family. Often the care is carried out at home, although it can also take place in a hospital or nursing home.

But Bullock said her mother would have no part of it. A fiercely independent 67-year-old from North Carolina, she would not hear of having strangers come into her home.

After her mother died, Bullock, who had been studying mental health among the elderly, decided to devote her research to finding out why African Americans seem to be so alienated from the latest, and seemingly most compassionate, approaches to death.

Some of the resistance, Bullock has found, is rooted in mistrust dating from historical atrocities when black Americans were denied decent healthcare or used as laboratory guinea pigs without their knowledge.

Some stems from a deeply spiritual tradition in which God, not a doctor, determines who lives and who dies.

Earleen Jackson, for example, was incensed last June when her doctor told her she had three months to live, saying that only God had the final word. She accepted hospice care after social workers explained that it would give her access to care at all hours and that it would in no way accelerate her death.

But Jessie Spencer, an elder from the Mount Bethel Baptist Church in New Haven, still has her doubts. She recently visited Jackson in the Connecticut Hospice's large, comfortable hospital.

One hospice's experience

On any given day, about 15% of patients being cared for by Connecticut Hospice at home or in the hospice's Branford palliative care hospital are from minority groups. That rate appears to reflect Connecticut's minority population and is higher than that of many other hospice programs.

Spencer said she worried about the hospice philosophy of discontinuing curative treatment and offering only comfort care once doctors say there is nothing more that can be done.

"I don't think you should give up. As long as she can take treatment, she can take it," Spencer said.

As Bullock put it, many blacks "believe in a higher power. They believe in miracles. Many African Americans don't believe this is the end. They'll go to church and pray about it, and others will pray for them."

Often African Americans choose to die in a hospital because they believe that only there will they get all of the treatment medicine has to offer. They are less likely than white patients to sign living wills or do-not-resuscitate orders, sometimes subjecting themselves to desperate and painful measures such as CPR or breathing tubes that may prolong, but not improve, their lives.

"It has resulted in people getting care with no benefit to the patient," Bullock said.

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