Can We Build Hospice for True Equality of Care?
A particularly poignant moment happened during my recent interview with
Ronit Elk, PhD. We were discussing her incredibly important research and pilot program delving into culturally based protocols to better engage African Americans with palliative and hospice care.
I asked, both innocently and ignorantly, “What have you found to be most effective in tailoring protocols for African Americans during a serious illness?”
Dr. Elk respectfully replied, “I always get into little bits of argument with people who say ‘tailoring,’ because tailoring is one thing, but you’re actually taking a concept that has been developed for other groups of people, and then trying to adapt it. What I like to do is use a method called community-based participatory research, which is a fancy name for saying, ‘partnering with the community.’ We partner with the community and you start by understanding their cultural values and what’s important to them. Then together with them, you build protocols and programs that fit their cultural values.”
I immediately knew she was right, and greatly appreciated her calling me out on the implications of my choice of words. It truly was a teachable moment … and just one example of how our mindset can be predisposed to certain biases, no matter how seemingly small, that can make a big difference in understanding.
“Tailoring” does indeed mean taking an existing garment and modifying it to fit someone else. Dr. Elk’s point is to begin with the very fabric of a culture and community, then create something highly customized from scratch to suit them to a T.
What might that look like for a rural African American community? Dr. Elk said this: “Let me give you one example. Many African Americans have this wonderful belief in hope. The hope that a miracle can happen. But when you say ‘hope’ and the physician who is trained primarily in terms of looking at the scientific data is saying, ‘I don’t get it. The creatinine levels are like this and the kidney levels are like that. These people are in denial. The numbers are showing that this person is going to be dying soon and there is really no hope.’
“But we’re talking at two different levels,” Dr. Elk added. “One is hope that a miracle can happen, and one is a reality in terms of the physical numbers. Now, miracles do happen, unfortunately they are rare, but they do happen. The key is the belief that in certain cultures, including the African American culture, that they say, ‘We very much respect you as the physician; however it is not you that decides, it is God that decides.’ This is the lack of understanding by clinicians and then getting into this discussion with family members, where family members get really upset because the doctor is not understanding.”
For end-of-life care, Dr. Elk suggests this reality affects the approach that needs to be taken based on cultural sensitivities. “We’re very much geared toward what does the patient want?” she added. “But in many cultures, it’s not just the individual that’s important or what the patient wants, but it’s also what the whole family or the whole community and even the pastor wants.”
The rest of my discussion with Dr. Elk was equally insightful. She pulled no punches in pointing out that our hospice system can use some crucial changes to engage with more minorities and improve access for greater equality of care. She said, “Lots of aspects of it are based on the white, middle class, Christian model, which is absolutely wonderful if you’re white, middle class and Christian. It’s not so great if you’re not any of those things and why? Because there are many aspects that are critical in one culture and not in another.”
After digesting Dr. Elk’s substantial comments, let me know if you would like to talk about developing messaging that will better resonate with whatever minority populations you serve. Email me anytime at [email protected].
Because if there’s one area where all humans deserve equality, it’s the right to die with as much comfort and dignity as possible.