Tuesday, April 26, 2011

Studying Race/Ethnicity and Attitudes Toward Death: Helpful or Harmful?

I received an email yesterday from CNN asking me to comment on a study published today in the Journal Cancer titled, "Racial Variation in Willingness to Trade Financial Resources for Life-Prolonging Cancer Treatment."   This is an interesting study that found that African Americans with cancer are more likely to state a willingness to spend down their financial resources to prolong their life than whites, 80% vs. 54%. 

My first thought was, wow! CNN!  That's the big time!  I then realized that the reporter was not Wolf Blitzer or at least Sanjay Gupta, but rather a blogger for the CNN health blog "The Chart."  I did the interview, and the post came out, and I wasn't quoted :(

What interested me most about the post were the comments.  Here are a few examples:
  • What a stupid, dumb and racist article and research.
  • WHO CARES....Study something that actually matters and doesn't split up the human race based on skin color.
Then there is this comment:
  • As a palliative care doctor, I feel that this is a very important study because it gives those of us who provide medical care to patients at life's end and their family members a better sense of their wishes. Studies, such as this one, look at large groups of people, not at individuals. The task of the front line healthcare provider, like myself, is to use the insights of a study like this in our daily work to be more helpful to all patients who I treat, and their family members. There are very significant differences in the end of life wishes of patients from different ethnic groups and this is very important for all providers to be aware of so that goals of care discussion can be approached in as appropriate and as sensitive a manner as possible.
Personally, I couldn't agree more with the palliative care doctor's comment.  But the overwhelming bulk of the comments were similar in sentiment to the top two comments: this type of research is harmful and not helpful.

As a scientist, I believe we should be able to explain our research clearly to the public.  But are the lay public sophisticated enough to understand the twin risks of ignoring differences in attitudes and behaviors by cultural group on the one hand, and propagating stereotypes on the other? 

Is studying race/ethnicity and attitudes toward death harmful or helpful?

by: Alex Smith

7 comments:

Jim Davis said...

Alex,
I would agree that any kind of study that helps us understand how people think or feel about the end of life and caring for those at the end of life is useful. Religious, regional, income and educational differences might also be important in how people value expenditure on health care. We can use what we learn to help individuals and policy makers target educational and policy issues that will help us improve the delivery of care for all people.

Dan Matlock said...

Thoughtful post Alex. According to the article, one out of five African Americans would not be willing to spend down their finances to prolong life. Thus, an a priori assumption that "African Americans would do anything to prolong their lives" may lead to a bad recommendation to the 20% that feel differently.

The bottom line, all care requires a patient-centered approach and each patient is different and unique. Findings such as this are somewhat less useful clinically in my opinion.

That said, they aren't necessarily offensive either.

Craig Fukushima said...

Alex,

I tweeted the CNN Health article yesterday with a bit of trepidation for the exact reactions that you identified in your post. Fortunately and a bit surprisingly, there was no negative feedback.

I greatly appreciate your thoughtful post. In my view, cultural background plays a role in views on end of life care and thus, there is a benefit derived from studying these differences. It has been my experience that the vast majority of the clinicians out there are interested in patient centered care. As such, these types of studies can assist them in helping to better understand their patient. But in the end, each patient's individual wishes must be addressed.

Thanks for the post-I'll be tweeting it today.

RAGOMGAR said...

I think that there are not inappropiate questions, in the research field about etnicity and its relation with health matters, but may be inappropiate conclussions. To inquire is the first stept to move forward and to improve.

Betty said...

Alex, I agree with your concern about comments that admonished such studies as being racist. I do not believe they are racist at all, because there are true and wonderful differences among all ethnic groups. The qualitative and quantitative diversity in how ethnic groups feel, believe, act, react, etc. about any major life-impacting decision is also what makes each ethnic group special. And it is not based on "color." It is based on an appreciation and understanding of cultural differences.

I'm Caucasian and I coauthored a hospice outreach booklet with an African-American woman. The booklet was based on a number of studies that demonstrated how much less African Americans (among other ethnic groups) utilized hospice or palliative care at end of life (EOL). Many factors, including variations in cultural beliefs, lower trust in our health care system, African-American history, and religious/spiritual beliefs about EOL were found to explain much of the less frequent use of hospice. Feeling greater trust and receiving further education about hospice were key to African Americans' likelihood of utilizing hospice and palliative care more frequently... so that they could have more access to the peace of mind, help, understanding, and care that Caucasians receive at EOL.

I am currently involved in research about hospice use by all other major ethnic groups in the U.S. (Asian Americans, Pacific Islanders, Latino Americans, Native Americans, among others). The disparity in utilization among all of these groups as compared to hospice utilization by Caucasians is wide, varied, and based largely on ethnic cultural uniquenesses... beliefs, spiritual history, immigrants vs non-immigrants, socioeconomic backgrounds, level of assimilation, trust, and other culturally-specific variables.

To ignore these unique and special cultural variations is to disable many from having the same access as Caucasians have to the positive impact of hospice and palliative care. I believe this would be a gross injustice to those of various ethnic backgrounds. When the cultural beliefs, histories, trust, etc. are embraced with understanding, education, and more appropriate outreach to address and support these differences, only then will diverse/ethnic groups gain greater access to potential benefits and support of hospice and palliative care. To ignore differences in EOL beliefs is to ignore any special needs and concerns that should be part of a more open dialog between providers and those facing end of life.

In my research to date, Native Americans utilize and have access the least to hospice and palliative care as compared with of ALL ethnic groups and Caucasians.

The better our understanding, the greater we can be available, offer access, and serve those facing EOL issues. And reaching out with more awareness of differences in cultural approaches to EOL will help build the trust and understanding to provide greater service access.

Betty

Anonymous said...

Great comments Betty. Thank you for your research and your validation of what I see on a daily basis. The mistrust and under utilization exists. To declare these questions as racist is a perpetuation of racism itself. Once my eyes were opened to the disparities in EOL & palliative care, I wondered how I could have missed it. It was there all along. My delivery of care has changed to meet the needs of the family and patient. I know to be prepared for mistrust and how to address it. These are valid questions. Not asking doesn't mean it doesn't exist. Asking means we acknowledge there is a disparity and tailor our care in an attempt to over come it. Maybe one day we will be successful and all ethnicities will utilize the services that are available without fear or mistrust.

academic said...

What an exciting experience!/Hilarious! Delightful! True!/wonderful stuff! thank you!


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