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.
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.”
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”
“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”