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.

PulmCC COPD Impact Study

The Impact study showed that inhaled steroids reduced the incidence of COPD exacerbation, in contrast to previous studies which suggested that LABA/LAMA combinations (Anoro, Stiolto, Bevespi) reduced exacerbations similar or greater degree. However the study’s findings are not without controversy. Should you prescribe a triple inhaler (Trelegy), or stick with dual LABA/LAMA, or dual LAMA/ICS like Breo, advair? I discuss these issues in our first Pulmonary, Critical Care (PulmCC) Podcast and how Trelegy might fit into the treatment of people with COPD.

The IMPACT trial; What do we do about inhaled steroids in COPD?

 

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“B” is for Bias!

Pity inhaled steroids. Once a favored drug in the treatment of COPD, they were initially advocated to be used in combination LABA’s (long acting beta agonists) to have a “protective” effect against the harms of LABA’s which were,, back  in the day, proposed to have existed in the SMART trial. Things of course have change quite a bit since then. The black box warning for combination inhalers has since been dropped. Ironically it’s now the inhaled steroids that we worry about in the treatment of COPD, as mounting evidence implicates inhaled steroids as increasing the risk of pneumonia.

In the most recent GOLD update, steroids have been relegated as add on therapy to LABA for patients with an exacerbation. However GOLD recommends LABA/LAMA combination as preferred due to evidence that the combination reduces exacerbations better than LABA/ICS, as demonstrated in the FLAME trial. In fact ICS is recommended only as add-on therapy to LABA/LAMA in patients who are highly symptomatic and at high risk of exacerbations.

The Impact trial may be changing that. It compared a single inhaler triple therapy LABA/LAMA/ICS to dual combinations of LABA/LAMA and LABA/ICS. Interestingly, and also quite confusingly, the triple therapy group had reduced exacerbations and reduced COPD related hospitalizations. These results are of course in conflict with the results of the Wisdom Trial, which saw no significant difference in the rate of exacerbations between LABA/LAMA combination vs. triple therapy with LAMA/LAMA/ICS. GSK, of course, has wasted no time telling us this,  touting the results of their newest inhaler far and wide. Continue reading “The IMPACT trial; What do we do about inhaled steroids in COPD?”

Not Dead but Not Alive; The terminally unhealed languish in America’s hospitals.

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May lay in a hospital bed, her wrinkled and mottled skin covered with leads, and sensors that monitored her every breath and heartbeat. A camera that was mounted on the wall allowed a doctor to zoom in closely enough to count her tattered eyelashes. Her husband  sat at her bedside, gently stroking her withering gray hair  as her chest moved slowly up and down accompanied by the soft whoosh-whoosh of the ventilator that breathed for her. He stared expectantly at her face as if at any moment she would rise and free herself from the myriad tubes that sustained her.  Her adult daughters sat and stared blankly at the floor, waiting for something, anything. The streams of data transmitted from her body were monitored closely both by a team in a remote electronic-ICU bunker 50 miles away and her ICU nurse 15 feet away. Yet what May could not have realized was that despite her family’s presence at her bedside and the twenty-four hour care she received, she had been abandoned. She was alone. 

Several weeks earlier, May came to the hospital from her nursing home, “yet another pneumonia”, the note in her chart said.  “She seems to get one of these every few months” said her husband “can’t we give her something for that?”. The Emergency Room physician explained that she had aspiration, essentially choking on her own food and spit. She would continue to get pneumonia, until she eventually passed away. This wasn’t the first time he had heard this. “They told me before to let her die, but I didn’t listen to them, I told them to treat her anyway, and she made it through. I didn’t give up on her then and I’m not going to now”, adding “she’s a fighter”. Her husband Daniels countenance was such that the Emergency physician admitting May to the hospital didn’t bother asking whether his wife should be resuscitated in the event her heart  or lungs stopped working and she needed to be put on life support. May was admitted to the general medical ward, and was started  on antibiotics, but she eventually got worse. Sometime in the middle of the night a nurse found her ashen and struggling to breathe, and called a “code blue”. May’s breathing had gotten so bad that she needed life support, she had a tube put down her trachea and was taken to the ICU where she was put on a ventilator.

Doctors worked on her for more than a week,  treating her pneumonia with powerful antibiotics. But even as her pneumonia cleared, her body withered. Her skin hung from her bones as her muscles wasted away, her eyes hollowed, and the skin of her arms filled with bruises as nurses struggled to find a place from which to draw blood. On the second Sunday of her ICU stay, the doctors tried a “trial extubation”. As the family understood it, her lungs had improved to the point that she might be able to be taken off the ventilator, but her body was now so weak, they did not know whether she would actually be able to breathe on her own. If she had to be put back on the ventilator, the doctors told them, she would require a tracheostomy that would allow her to live on the ventilator long term.  The social worker would then seek placement in a long term facility for patients on long term ventilators, essentially a hybrid hospital, rehab, and nursing home in one. Her breathing failed within minutes of being taken off the ventilator, and she was immediately put back on life support.

It was the following day, Monday morning, that I met with May’s family to discuss what had happened the day before, it was the beginning of my ICU week. For May and her family it was the beginning of their third week in the ICU, and it showed. Her husband, Daniel looked unkept, his thick shock of gray hair was whirled and tangled, his flannel shirt partly tucked into ripped and stained jeans. He gave the impression of someone who had not been taking care of himself, let alone someone who could take care of his chronically ill wife. His visage upon seeing me betrayed both surprise and regret as he recognized me from four months earlier.  I was the doctor who told him that May was going to die. Continue reading “Not Dead but Not Alive; The terminally unhealed languish in America’s hospitals.”

Pulmonary Medicine Update: Bariatric surgery for COPD exacerbations & The Mortality Indicator that Won’t Die.

Study Shows That Bariatric Surgery Reduced COPD Exacerbations by More Than Half

I often tell my patients with COPD that quitting smoking can have a greater effect on their respiratory health than any inhaler that I could prescribe them. Should I now also extend that advice to include weight loss for obese patients with COPD? In this journal CHEST® study, researchers used registry data to look at COPD exacerbations for patients both before and after bariatric surgery. In the year before bariatric surgery, risk of COPD exacerbations was 31%. Looking at the rate of COPD exacerbations during the year after bariatric surgery, that rate dropped to 12%, an astounding change.

The accompanying editorial proposes mechanisms explaining why this might be so and postulates whether obesity could be a modifiable risk factor in COPD. While these results are certainly exciting, we look forward to future investigation into whether bariatric surgery, or other weight loss means, could further help reduce risk of COPD exacerbation.

Pneumonia: If You Can’t See It, Does It Still Exist?

The diagnosis of pneumonia requires the radiographic presence of infiltrates on imaging. However, with its greater resolution, CT scanning can often demonstrate infiltrates when none are seen on chest roentgenogram. Do we treat these the same as a regular pneumonia? This study sought to quantify differences between patients with pneumonia as seen on a chest radiograph vs CT scanning. The differences between the two groups appeared to be minor, with procalcitonin levels appearing to be lower in the CT group. Otherwise, it would appear that patients with pneumonia seen only on CT scanning should be managed like other groups.

The accompanying editorial raises the question of what to do with patients who are suspected of pneumonia but have negative chest radiographs. Certainly, exposing them all to CT scanning can’t be the right answer. Perhaps we should err on the side of caution and treat these patients for pneumonia when clinical suspicion is high. Conversely, we should consider CT scanning in this group only if suspicion is low and the presence of an infiltrate would change management. Continue reading “Pulmonary Medicine Update: Bariatric surgery for COPD exacerbations & The Mortality Indicator that Won’t Die.”

Opioid lawsuit: We’ve seen this before, and it didn’t go well.

When you live in Tobacco Road region of North Carolina, the local news tends to focus on 3 things; Duke basketball, UNC basketball, and Duke vs.UNC basketball. So it was a little surprising to see in the front page of my local paper that my own county is joining a lawsuit against three of the nation’s largest opioid distributors.

Perhaps I shouldn’t have been surprised, given the scope of the opioid epidemic. Opioid related deaths have topped 40,000 in recent years. The drug overdose death rate in in my home state of North Carolina jumped by nearly 24.7% from 2015 to 2016 and area hospitals including my own ICU can certainly attest to this.

Multiple state and county governments are joining lawsuits against opioid manufacturers and distributors to recoup costs which they allege were due to the crisis the companies helped create. And in a bit of sweet, sweet irony, even JCAHO (aka Joint Commission) a not-for profit entity responsible for antagonizing accrediting health care organizations is getting sued. I can tell you that no doctor will shed a tear over that one. Continue reading “Opioid lawsuit: We’ve seen this before, and it didn’t go well.”

Devastation in Puerto Rico leads to hospital shortages in U.S.

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Hospitals run short of critical medications after loss of production in Puerto Rico facilities. 

“Doc, you mind switching that to an oral preparation?”, our clinical pharmacist inquired during multi-disciplinary rounds as intravenous infusion devices beeped annoyingly in the background.  Taking care of ICU patients can be extraordinarily complicated, so doing it as part of a team helps make sure that all bases are covered. ICU’s like ours have a BEEP BEEP BEEP. Excuse me, for a moment,  Staci, can you get that thing to stop, please? BEEP, BEEP, BEE– Thanks, Staci!. As I was saying, like many hospitals, ours uses a multidisciplinary model which makes rounds on all patients in the ICU.  An ICU nurse, clinical pharmacist, dietitian,  social worker, pastoral care, respiratory therapist, each provides important insight and perspective that guides patient care in the right direction.

As a pulmonary, critical care doc, I’m lucky to have a great team, so my ears perked up when I heard the suggestion. This was now the third patient he had made a suggestion to switch a medication to the oral route from the intravenous route. “What gives, Scott?” Over the past few years, we’ve been experiencing alot of spot medication shortages either because of inadequate supply, or because of precipitous price increases;  we can usually change to an alternative. But today was different. Today we were switching a number of different medications, all of which were intravenous to oral formulations of the same or similar medicines.

“It’s not the medicines,” he replied, “It’s the bags they’re in”. Continue reading “Devastation in Puerto Rico leads to hospital shortages in U.S.”