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.

Me and My A.E.D.

“Everyone should have BLS training. . . we’ll all be better off because of it”     -Me.

I arrived at my designated gate at Chicago’s O’Hare Airport.  The run there kept the adrenaline level up in my system, though the hubbub was now well behind. I pulled the crumpled boarding pass out of my pocket as I caught my breath. No that’s a hotel receipt. Check the other pocket, there it is, Zone 3, that can’t be that bad; I thought,  there’s gotta be, what maybe 6 or 7 zones, right? “Welcome aboard American Airlines flight to Flint, Michigan” the gate attendant announced. We welcome our platinum medallion, gold medallion, silver medallion, bronze high-flyers, copper star club, as well as plastic fantastic, and purple star members, followed by zones one and two” The last of the passengers was already through the jetway. “Now boarding zone three, welcome aboard”.

After handing over my crumpled boarding pass for scanning, I made my  down the jetway and onto what appeared to be a small but fairly packed little jet. Passengers on each side of the aisle eyed me as I walked past, a few noticed that my jeans were soaked from the knees down. Some caught the odor that  trailed behind, a light of recognition igniting in their eyes as they realized what it was. Does he really smell like that? Is he the one that’s dragging that awful scent through this cabin?

6 hours earlier things had been going very differently for me. My colleagues and I had just given a well received talk at the annual Chest convention. I had reconnected with old friends that I hadn’t seen since training.  I had just personally  thanked Kevin Pho (of KevinMD fame) in the hotel coffee shop for giving our keynote address and getting our membership fired up about the future of medicine and social media. It was with this sense of excitement and renewed enthusiasm that I boarded my plane to catch a connection at O’Hare.

I also distinctly recall that, at the time, my pants were absolutely one-hundred percent completely dry. Continue reading “Me and My A.E.D.”

How a Journal Club and a Blog Challenged the Mighty NEJM

Could this be end of the Tonka-Scope?

Much has been written about how Web 2.0 tools can change the healthcare landscape.  It would appear a recent set of circumstances has upped the ante.

This story begins with a recent study that attempted to tackle the problem of ICU infections. ICU infections are a challenging problem, patients who are admitted to the ICU are at risk of worsening illness and death from infections such as MRSA which can be acquired while in the ICU setting. To counteract this risk, current practice is the performance of surveillance cultures on people who are admitted to intensive care. If the person tests positive for certain infections they are placed in isolation (and health care providers are asked to wear silly gowns and share a useless stethoscope).

The success of this strategy is dubious, ranging from successful in some studies to nearly useless in others. Based upon my personal observations of my own hospital’s isolation practices, my only conclusion has been that yellow is not a good look for me.

But I digress. In this study, patients underwent “universal decontamination” with chlorhexidine, a commonly used antiseptic. The study found a dramatic drop in the numbers of MRSA infections and bloodstream infections. The study was peer reviewed and published in the flagship of medical publishing, the New England Journal of Medicine (sorry JAMA). Continue reading “How a Journal Club and a Blog Challenged the Mighty NEJM”

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”

The War Is Not Over: PTSD Common Among ICU Survivors.

The ICU is a terrifying place. The noise, the alarms, the invasive tubes and wires, and the loss of control all contribute to an overall feeling of anxiety and stress in patients and in families. Add to that the emotional burden of being ill or having a sick family member or friend, and you have a perfect storm for the development of post traumatic stress disorder.

As a health-care provider working in the ICU, it is easy to forget how desensitized we are to this environment. Recently, I took a phone call from my wife (who is a nonmedical professional) in the ICU. After a few minutes, she asked in a panicked voice, “Do you need to go get that alarm”?! And of course, it was a “first-level” alarm that I had completely tuned out and hadn’t even noticed. Looking around the ICU as I write this, I’m certain that I’m not the only one who is numb to these stimuli.

In a recent issue of CHEST, Dr. Bienvenu and colleagues report the findings of a study looking at posttraumatic stress disorder in the survivors of acute lung injury. They interviewed 60 survivors of acute lung injury 1 to 5 years after their hospitalizations. The authors compared a self-reported screening tool and a clinician-administered tool. They found that 27% of patients in this cohort had PTSD or partial PTSD, and that the self-reported screening tool was a reliable method of assessing PTSD in this population. This is promising, since a self-reported tool can gain more widespread use and may be able to help future investigators better determine factors associated with the development of PTSD in the ICU survivors.

Determining who would be likely to develop PTSD would be an important advance in critical care. Often I think we are surprised at how even our “good” outcomes can have long-standing functional problems following their ICU course. In the perfectly titled accompanying editorial Surviving the ICU Does Not Mean That the War Is Over, Dr. Schelling tells the story of one patient who survived extracorporeal membrane oxygenation (ECMO) only to report horrific memories of scenes from an apocalyptic warfare. These memories significantly impacted his quality of life and functional recovery, even though his overall outcome was “good.”

These studies add to the growing literature about the long-term effects of our treatments. I’d be eager to see more. We do not consider this important area of quality enough. With studies like this to help give us better tools, hopefully we will see more investigations into the long-term impacts of the life-saving therapies we provide.

Chris Carroll, MD, FCCP is a Pediatric Intensivist at Connecticut Children’s Medical Center, and my Social Media co-editor at Chest Journal. He is on twitter @ChrisCarrollMD. Be sure to check out our posts at the ACCP Thought Leaders Blog, where this article  was originally posted.