Study Finds End-of-Life Wishes Vary Along Culture and Gender Lines
March 08, 2006
By: Jean Johnson for Body1
The most vulnerable times of life are at the beginning and the end. But while American society welcomes newborns with open arms, its response to elders on the other side of life can be marked by fear and confusion. Add rising multi-cultural and gender influences in modern American society, and the senior equation related to end-of-life wishes gets all the more complicated.
| Take Action | Think Ahead
The California Coalition for Compassionate Care urges families to think well ahead of the end-of-life curve, clarify their wishes, and make them known to each other before the inevitable crisis happens.
Ponder tough questions ahead of time:
If you could plan it today, what would the last day or week of your life look like? Who would be there? Where would you be?
Who do you want to make medical decisions for you if you are unable to speak for yourself?
Have you completed forms that can express your wishes in the event you are unable? Particularly, an Advanced Directive and a Health Care Power of Attorney?
What king of conditions would make you want to stop life-prolonging treatment? For example if you were:
Unaware of your surroundings
Unable to appreciate or continue important relationships
Unable to think well enough to make everyday decisions
In severe pain or discomfort
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What do people want for themselves when they grow so fragile they are no longer able to live independently or even speak on their own behalf? On the one hand, some focus on prolonging life as long as possible with institutional intervention, feeding tubes and respirators. Others tend to favor the idea of passing on at home taking only enough medication to keep any associated pain tolerable. In the middle, of course, are shades of gray with questions related to diapers, family, paid caregivers, home, hospice, adult care homes and nursing homes.
No matter where an individual person stands, a new study published in the Journal of the American Geriatrics Society found that cultural background and gender seem to influence peoples’ thinking. Arab-Americans queried indicated that staying home with their families at the end of their lives is vastly preferable to going to a nursing home. Conversely, Caucasians and African Americans stated that since they didn’t want to burden their families, institutional care was acceptable.
Hispanics were most concerned about “dying with dignity,” especially among males, and so were opposed to the idea of having diapers changed or supporting what one man termed “assisted dying” instead of assisted living. As he observed, “I don’t think it is suicide if you’ve already been predetermined and everyone knows you are dong to die.” A black woman who was questioned, though, said she disagreed since people never know when something unexpected will happen.
Sonia Duffy, Ph.D., R.N. – research investigator with the Center for Practice Management and Outcomes Research at the Veterans Affairs Ann Arbor Healthcare System, who also works with the departments of Otolaryngology and Psychiatry at the University of Michigan Medical School – was the lead in a team that questioned 73 people, all over 50 years of age. Those participating in the study identified themselves as Arab Muslim, Arab Christian, Hispanic, black, or white.
“One of the most important findings in our study is that there are so many different points of view, it is important for healthcare providers to treat everyone as an individual,” said Duffy.
Eugene Daniels of Naselle, Washington says that’s what he experienced when his father died – for the most part.
“Dad was a sick man. We all knew that,” Daniels said. “He lived with my sister over in eastern Oregon, but one day he got into breathing problems and had to go into the hospital. He tried for three weeks to beat his lab numbers. We were mostly there every day, but then we both had to go back to work for a couple days and wouldn’t you know, that’s when he really went downhill.
“My sister got back to the hospital first, and she found Dad tipped way back in bed with his feet elevated at this really strange angle high in the air. There was also an infiltrated IV in his arm that had caused it to swell some so that it hurt him. And there was a respiratory technician in the room about to suction Dad. Sis ran him off and got the doctor called. She took the IV out herself too, since Dad was half-crying and she has some medical background. She already knew by dad’s lab numbers that he wasn’t going to make it, and the doctor confirmed this when she met with him.”
Daniels explains that after his father told his sister “I have to go” and she clarified his statement, she had the physician stop everything except their father’s pain medication. “The physician went to dad’s bedside to double check. Told him that since things weren’t really helping that they would discontinue them if that’s what dad wanted,” Daniels said. “Poor dad didn’t even open his eyes. He just nodded. He had already spoken to my sister in private, and we felt that if he could have had it any other way, he would have preferred to die at home without strangers around.”
The Daniels family is Caucasian, but their father’s approach to dying correlated more to the Duffy study’s findings of Arab-Americans who “try desperately not to go to nursing homes,” and Hispanics who were concerned about dignity at death and eschewed things like wearing diapers and life-prolonging feeding tubes that are taped in place to patient’s noses.
When asked about the apparent discrepancy, Daniels said, “Our family has always been on the cultural fringe of white society and interested in multicultural things. So it’s no surprise to me that dad had less traditional ideas in mind when his time finally came. Actually, I don’t know if it was multicultural in his case or just what he saw when he went to visit a long-lost cousin in a nursing home way back when. He came back and told us it was horrible and that he never ever wanted us to dump him off in one of those places. He never wavered from that, I know for a fact.”
Harsh words from Daniels, perhaps, but when it comes to end-of-life matters, emotions can run high and raw. Duffy notes that the main thing Americans need to keep in mind is that we live in an increasingly diverse society, even though our institutional systems still tend to reflect mainstream ethics.
“One of the most important findings in our study is that there are so many different points of view,” she said. “We should keep in mind that our country’s medical system is based on Western values, and that those values may not translate to other cultures.”
For his part, Daniels would take the study’s conclusions a step future.
“I would hope that those in positions of power would not assume that just because you are white, you subscribe to the dominant views. I feel so grateful to have been influenced by people from other cultures in this country, and I hope to be able to orchestrate my own life – right down to my dying day – based on that fusion. I know my sister and I saw that at work when dad died, and we appreciated the physician not forcing anything on dad that he didn’t want. I just hope the same for us when our times come.”
Last updated: 08-Mar-06
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