African Americans Are Less Accepting of Hospice and Palliative Care at End of Life; What Can ICU Doctors Do?

I grew up in a small town in the gently rolling hills of Connecticut. Previously unheard of, but now infamous, my hometown, Newtown, was a sleepy small New England town of mostly white people for whom my lone brown face served as diversity. I went to college at a mostly white college in said state, and went on to an Indian Medical School with predominantly other brown people. So you might imagine that July 1st, 2001 proved to be quite a shock. That was the day when I started my residency in Detroit, Michigan. Only I didn’t think there would be much culture shock, after all I was great guy who gets along with everybody. I was smart too, so naturally all patients would bow to my obvious mastery of medicine. It’s true that I had never really spent much time around African Americans, however I was an avid fan of both the Cosby show AND Fresh Prince of Bel Air. So really, what could go wrong?

Over the past 2 decades I’ve learned alot about how African Americans view health care and physicians. This is particularly important for anyone in the field of critical care where clinicians   often need to discuss end of life care decisions with patients and their families. Many of these conversations revolve around changing the goals of care from cure to comfort. These conversations are difficult, emotionally charged, and put tremendous strain on patients and their families. They also put a strain on medical teams–it becomes demoralizing to continue to care for someone who is obviously suffering and has no real chance of getting better. These conversations can be even more frustrating with African American patients and families.

As someone who provides care to the African American community I can certainly endorse what the literature shows; African Americans are more likely to choose life sustaining therapies over palliative or hospice approaches. The literature also suggests that African Americans have less awareness of hospice and advance care planning, and are less likely to enroll in hospice.  They are also more likely to withdraw from hospice to seek further life sustaining medical care. This is problematic as African Americans often have a greater illness burden at baseline, often have less access to medical care, and thus may have a greater need for palliative care services.

Why are African Americans less likely to accept palliative care and hospice enrollment? There may be several reasons, but there are 2 central reasons among them, at least when it comes to end of life conversations: faith and trust.

A common refrain among African American patients and their families is the power of healing,  that God can heal all ills, that miracles happen, and that God alone determines life and death. As a health care provider who often deals with hopeless end of life situations, to have my logical and reasoned conclusions that a person had no reasonable chance of recovery swept aside in order to “pray for a miracle” was incredibly frustrating.  These rebukes of my recommendations for hospice seemed at first to me as affronts to science and medicine. More than that, I took them personally as a total disregard for all the training and education I had gone through to take care of their loved one.

For many years I viewed this obstinance, incorrectly, as a sort of stubbornness- an incorrect viewpoint stemming from ignorance of science, and a lack respect for medical institutions. As my experience with African American patients has grown, I better understand that it was perhaps my own view that was incorrect.  

African Americans often see end of life situations through the lens of spiritual belief. A severe illness is a trial; a test of faith that must be endured. If God alone can create miracles, then faith alone can provide them. To belittle these cultural beliefs can itself be an affront to patients and their families and may lessen any chance of meaningful communications.

There are also issues with trust. The African American community has met with disparity, bias and past injustices, and hence has a distrust of many institutions, including medicine. It is thus important to remember that as I don my white coat, I am now the speaking personification of that institution, and this fact may reduce my credibility in the eyes of some. It is therefore important for providers not to carry a chip on their shoulder, to enter discussions as equals rather than from a position of authority. To engage with family and community members including a patient’s pastor who may help bridge communication gaps.

Both greater understanding and greater empathy can help bridge the gap of understanding between health care providers and African American patients and their families. But we need more that that. I’ve said before that the ICU is the last and worst place to talk about end of life care– there’s simply too much stress, emotional strain and physical fatigue for people and their families to think objectively. We need to have these conversations much sooner. Dr. Kimberly Johnson, a researcher at Duke University, has started to engage with African American pastors to educate parishioners about advance care planning and dispel myths about hospice. Ultimately, we need more of this boots on the ground-type engagement in order to spare our African American patients from unnecessary end of life interventions.

Deep Ramachandran, M.D. is a Pulmonary, Critical Care, Sleep Medicine physician, and CHEST Journal Social Media Editor. He blogs at Caduceusblog and the CHEST Thought Leaders Blog. He is on twitter @Caduceusblogger.

Controversies Surrounding Brain Death

by Chris Carroll, MD, MS.

The death of any person can be tragic, even more so when that person is a child.  Recently, there has been significant media coverage of the case of Jahi McMath, a 13-year old girl who according to news reports, underwent medical procedures to try to improve her obstructive sleep apnea and arrested following surgery. She was resuscitated and placed on a ventilator, but was pronounced brain dead on December 12th.  Our thoughts and prayers go out to the family during this difficult time and to the medical staff caring for Jahi and her family through this challenging and emotional situation.

 Although this case presents an opportunity to provide education about the determination of death, there has been little reasoned discussion.  Emotional discussions are understandable in situations like this one.  But for situations with as serious consequences as this, thoughtful discussions need to occur as well.

 The facts of this case are clear.  Although I am not involved in the care of this patient, from reading the outside neurologist’s report, her condition is not in doubt.  Legally and medically, she is dead.

 Brain death has been formally defined in the US since the 1980’s.  In a Presidential Commission that consisted of doctors, lawyers and bioethicists, brain death was defined as “the irreversible cessation of all functions of the entire brain, including the brain stem” and established detailed clinical steps needed to make that determination.

 So why do we have so much trouble with brain death? Continue reading “Controversies Surrounding Brain Death”

End of Life Conversations are Becoming End of Life Confrontations

“How Dare You!”

Life can change in a heartbeat. Most of us believe that our lives, our loves and all the that things that make us who we are is a gift from a higher power. One that can be taken away as swiftly as it is given. But somewhere in the shuffle of taking kids to practice, catching up on emails, worrying about bills, and the search for the perfect barbecue, it’s all too easy to forget the truth of life. The one truth. The one single thing that life guarantees each and every one of us. From the moment we take our first breath,  life makes to us but one promise. The promise that our life will someday end.

“Who do you think you are?”

For some of us, death comes after a lifetime of achievement, for others all too soon. For many it will be feared, for others it will be welcomed as their bodies wither away. But for more and more of us in our increasingly sterile and safe society, it is simply not to be thought of at all. An unwelcome stepchild locked tightly away in the attics of our consciousness. Like a demon in waiting, we reshape it, remake it, remold it, until it becomes an ever distant sunset that bookends a romantic dream of a life full of love, accomplishment, achievement.

“You have no right to say that!”

Until finally, that inevitable day approaches. A man or woman in a white coat tells you the terrible news that your loved one is passing away. That yes,  they are alive and can be kept alive, but there is practically no chance that they could recover. They will never go back to the person they were before.

“Where’s my regular doctor?” Continue reading “End of Life Conversations are Becoming End of Life Confrontations”

Offer Hospice Patients a Smile.

Hospitals are busy places to work. The work is fast paced, and never seems to stop. For most physicians, the work ends when the work is done, or until you fall over, whichever comes first. So as a consultant, when I am seeing a patient wherein there is no longer anything that I am contributing to a patient’s care it’s routine that a physician would “sign off” the case, meaning I would not continue to see the patient on a daily basis but would be available if I were needed. Sure, I might have a good repoire with a patient, and some even tell me that I have a nice smile, but it hardly seems like a reason to continue to bill their insurance company without actually contributing any expertise. Despite how nice I think my smile is, I have yet to find an insurance company  willing to pay to see it.

It’s no surprise then, that in such a busy workplace the physicians-in-training that I regularly work with would want to sign off a case as soon as possible. Unlike most of their bosses, they get paid the same no matter how many patients they see. There’s no incentive for them to see more, and if they see too many, it becomes difficult to learn anything.

So for many specialists who round on patients in a hospital, and for physicians in training in particular, the typical approach to a patient who has enrolled in hospice or decided to otherwise stop all treatments other than comfort measures, is to sign off the case.

For those patients, the thought is, most of them are waiting to be discharged home or to another facility, and have accepted that the end of life is coming. In such situations families are typically grieving, making end of life arrangements or simply trying to spend as much time with their loved one as possible before the end comes. Why would it be necessary then for a specialist or a team of physicians to enter the room of such a person, ask a plethora of unnecessary questions, perform an exam and offer meaningless platitudes like “hang in there! you’re doing great!”?.  All this to a person whose one certainty is that they’re not doing great, and they’re most definitely not going to be able to “hang in there”!

Thus my approach has been to sign off such patients, and based on what I’ve seen, it’s the approach of most other physicians as well. I had always thought that ridding people of my pestering presence at the end of their lives was the most reasonable and humane thing I could do.

But things changed for me recently, when my own father entered hospice. He was in the hospital for a few weeks, and being a physician himself, he knew the end was coming. My mother, of course found it difficult to let go. After 50 years together, who could blame her? She agreed grudgingly to hospice, but needed constant reassurance that it was the right thing to do. I remember the constant look of consternation and worry etched on her face in the days after he was enrolled in hospice (but was still in the hospital). One by one, the physicians who had convinced her that there was nothing more to be done, disappeared. The physicians who reassured her that he would be well taken care of no longer visited, at just the time that she needed their reassurance more than ever. Her face wore a look that said, “Are we doing the right thing? Are they just trying to get rid of us?” Despite having a pulmonary, critical care physician for a son, there are some things you just need to hear from your doctors, the people who have been taking care of you, the professionals who know you.

Ultimately she came to accept the inevitable, she’s a strong person, and she knew she had no choice. He passed away peacefully.

But that experience taught me to change something in my own practice. I still round with my physicians-in-training, as I always have, we still sign off those patients who are going into hospice as we always have, so  the team does not needlessly pester a person at the end of their life. Instead, I walk into the room by myself, I perform no exam, I ask no medical questions. I offer them nothing but my smile. And it’s for free.

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