Life Matters Media
Quality of life at the end of life

Overcoming Barriers To Advance Care Planning Among African-Americans

BY DANIEL GAITAN | daniel@lifemattersmedia.org

African-Americans receive worse end of life care and are far less likely to participate in advance care planning than whites.

Unfortunately, clinicians and researchers often fail to recognize the numerous, interconnected factors influencing advance care planning among African-Americans, according to Dr. Justin Sanders, an instructor in medicine at Harvard Medical School.

Dr. Justin Sanders

Dr. Justin Sanders

Sanders spoke with Life Matters Media about improving end of life care among African-Americans and his latest study published in the Journal of Palliative Medicine, which calls for a more “nuanced” approach for end of life-decision-making among minorities.

Formal advance care planning may take the form of an advance health care directive, such as living will or do-not-resuscitate order, or in identification of a health care surrogate. However, Sanders suggests focused communication between patients, family and providers would be more effective for many African-Americans.

Research shows terminally ill patients who participate in advance care planning receive less aggressive and invasive medical treatments near death, more goal-oriented care and higher quality of life at the end of life.

In “Factors Impacting Advance Care Planning among African Americans” you criticize literature focused solely on encouraging African-Americans to complete formal advance directives. Why?

Everybody has access to end of life care, it just doesn’t all look the same.

One of the things that’s been recognized as an important part of improving end of life care in our country is improved advance care planning.

Trying to understand the things that get in the way of that, or facilitate that, for African-Americans is really important. But I think that my own frustration with the literature to date is that it focuses only on barriers to advance care planning for African-Americans.

Literature says stuff like, “The reason African-Americans don’t participate in advance care planning is because they prefer more aggressive care at the end of life,” as if that’s the answer. Whereas the question really is, “Why would some prefer more aggressive care at the end of life?”

Do African-Americans really prefer more aggressive medical treatments at the end of life?

We know that most Americans and even African-Americans prefer comfort-focused care at home at the end of life, yet most Americans don’t get that, and African-Americans are even less likely to get that.

So, even though some studies show that African-Americans prefer more aggressive care, the truth is that more African-Americans prefer comfort focused care. It’s just that more African-Americans prefer aggressive or life-prolonging care than whites.

How and why are factors influencing advance care planning related?

There are multiple factors or barriers. What we tried to do in our paper is create a model of how these factors interact with each other.

For example, take religion and spirituality, beliefs about illness, and family decision-making. These three factors are distinct and have been identified in literature, but how are they connected?

Well, they are all connected under an umbrella of culture, and those cultural attributes are shaped within a historical context.

The sentinel event in African-American history is slavery, and so we tried to think about how these cultural factors are related and how they fit in a historical context.

We’re in a cultural moment where we’re recognizing how our hidden biases shape our behavior. Understanding, from both the patient and provider side, where are the barriers to advance care planning is the first step to understanding how to overcome them.

But you can’t erase history. If these barriers emerged within a historical context what can you do?

I think that effective communication is a way to overcome these barriers.

I think systems that care for African-Americans need to implement the kind of system changes and education for physicians that really helps them maximize the potential of communication.

Communication should emphasize the impact of rapport and respect between doctor and patient. Good communication has the potential to be reparative in some way.

Working in the Bronx, where I trained, with predominately African-Americans and other minorities, I learned that respect through communication has a tremendous opportunity to overcome barriers.

Can open, honest conversation about end of life care have a bigger impact than just completing a formal advance directive?

Absolutely.

Advance care planning communication that focuses on goals, values and priorities in an open-ended way is so much more powerful than conversation that focuses around an advance directive.

For example, the POLST (Physicians Order for Life Sustaining Treatment) paradigm is focused on procedures, and particularly what procedures you’re not going to do.

The problem with that approach is that when you’re working in a community for whom historically many things have not been done, and perception even in contemporary life is that things will not be done because someone is African-American, that talking about procedures is really a bad way to start a conversation about advance care planning.

While it’s not intended to be this way, people use the POLST as a conversation tool.