Saturday, March 13, 2010

Racial Disparity in Hospice Enrollment.

From HFA's Hospice and Caregiving Blog, a look at the racial disparities in hospice enrollment. The fact is that minorities including blacks and hispanics enroll in hospice much less often than whites, even though they suffer some illnesses at a higher rate.

Most of the reports I've seen coming out about this simply note the facts and statistics but make little speculation as to why. It is the why that is most important if we wish to ensure that all Americans have a chance to die the way they want to.

I can guess at a two primary reasons: fear of the medical community after decades of what these groups may rightly call discrimination against the value of minority lives; and a higher prevalence of devout faith which studies have shown compels individuals to agree to aggressive care until the end of life.

Layer these two factors over the impression in larger society that enrolling in hospice is "giving up," and the chaos of last summer that, whether we like to admit it or not, has changed the way the media and society view hospice, advance directives, end of life planning. For minorities who already have less resources for caring for the dying in their homes and a lower rate of participation in their own caregiving (because they tend to use clinics where a relationship with a doctor is not fostered) and you have a perfect storm of challenge for dying minorities and their families.

As in ever other sector of society, the poor and minorities suffer the worst outcomes because of marginalization, lack of access and information and poverty. Health care is no exception. In fact, it is one of the primary failures of our society.

The March 8 issue of the Archives of Internal Medicine reports that among patients with advanced heart failure, blacks and Hispanics are less likely to enroll in hospice care. Researchers from the Institute for Aging Research of Hebrew SeniorLife and Boston University School of Medicine adjusted for sociodemographic, clinical, and geographic factors and found that blacks were 41% less likely to use hospice care than whites, and Hispanics were 51% less likely.

Researchers looked at 98,258 beneficiaries who were not enrolled in 2000, and whether or not they entered hospice in 2001.

From the
Ivanhoe Newswire:
Concerning experts is the fact that blacks develop heart failure at a significantly higher rate than Hispanics and whites, mostly because of their increased rates of diabetes and high blood pressure. A recent study revealed young and middle-aged blacks suffer heart failure 20 times more than white individuals in the same age group.

"Our findings document significant racial differences in hospice use and show that overall increases in the availability of hospice services in the 1990s have not erased racial differences in hospice utilization," Jane L. Givens, M.D., M.S.C.E., lead author and a scientist at the Institute for Aging Research in Boston, was quoted as saying.

Earlier studies show cultural belief and values play an important role in hospice use, but Dr. Givens says hospice care must be culturally sensitive to work.
Read the Cardiology Today and MedPage Today reports of this study.

HFA's 2009 initiative focused on
Diversity and End-of-Life Care, and also included this special report on African Americans and End-of-Life Care. The report offers explanations as to why hospice, historically, has not been a choice for many African Americans, looks at grief and the African American community, and suggests ways to reach out to African Americans who are making end-of-life decisions.

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Anonymous Frances Shani Parker said...

Ann, as an African American hospice volunteer and author, I appreciate your addressing this problem, and I am in agreement with you.

I want to add further that the responsibility for changing attitudes that cause disparities within the healthcare system rests with the system that created them. This is not only a healthcare issue, but also a moral one. This is not a case of minorities needing to stop being distrustful (get over it) so the healthcare system can better serve them. Healthcare providers must own the fact that a large amount of research on disparities in racial and ethnic minority healthcare is true and make every effort to demonstrate equitable practices.

Better education in racial and ethnic cultural sensitivity, however, is not enough. Negative stereotypes are activated with and without intent, particularly in high-pressure work environments. Serious accountability from healthcare providers must include rewards and penalties. Incentives should be offered to encourage healthcare institutions to work diligently at lowering their incidents of disparities negatively impacting racial and ethnic minorities, as well as women and low economic groups. Solutions must be implemented with ongoing monitoring. Disparities of the magnitude that exists now will not be willed away.

There is a tendency among some healthcare workers to assume that the solution to this problem rests with leaders of the “institution” when, in fact, it belongs to each person making up the institution. The question “Do You Treat Patients Differently Based on Race?” is one that every healthcare worker must explore at a personal level with honesty. In spite of overwhelming research to the contrary, most responders still say, ”Oh, I’m colorblind. I treat everybody the same.” Recognition of the problem is the first step toward improvement. Racial and ethnic disparities must be eliminated before America will ever realize true equality in healthcare among its diverse populations.

April 13, 2010 at 1:03 PM  
Blogger Ann Neumann said...

Hi Frances,

Thanks so much for stopping by and for including your comment.

I agree with you that racism and discrimination have to be guarded against by all members of the health care system. But how do we/they do that? And is this an issue of the racism and discrimination prevalent in society as a whole (since all health care providers/workers are members of society? Or is there something particular about the culture in health care that makes racism and discrimination more pronounced?

I would love to see something like equal opportunity passed for health care delivery but while the industry is so averse to regulation (note, we still don't have a patients' bill of rights), I wonder if you have any ideas on how to implement such oversight.

You (I assume) and I both believe that health care is a right. How do we address those who think it is a commodity?

April 13, 2010 at 1:11 PM  
Anonymous Frances Shani Parker said...

While some legislation is needed to enforce accountability, a lot can be done in terms of education and changing attitudes at local levels within organizations serious about making changes. Research shows that negative stereotypes are activated with and without intent, particularly in high-pressure work healthcare environments. Videos like “Does Your Patient's Race Affect the Care That You Deliver?” help to start some discussions.

Regarding hospice, I have had a blog post up for almost a year titled "Hospice Cultural Diversity: Share What Your Hospice Organization Is Doing.” I even included examples of what two hospice organizations are doing to promote cultural diversity. I know from my blog tracker that numerous hospice organizations have visited the post. Not one has responded with a comment on what they are doing.

April 14, 2010 at 12:45 AM  
Blogger Ann Neumann said...

Thanks so much for these links, Frances!

April 23, 2010 at 6:24 PM  
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