Wednesday, March 5, 2014

Doctors, Patients & the Legacy of Henrietta Lacks

Can telling the truth be bad medicine? 
Can lies be in a patient's best interests?
I posed these questions to followers of @medethicsandme, the Twitter feed of the Boston nonprofit Community Voices in Medical Ethics. The tweet linked to a compelling New York Times story suggesting convincingly that honesty is not always the best policy in the doctor-patient relationship. In the Times story, the doctor-author grudgingly abides a father’s request to tell a patient news grounded more in hope than medical opinion. Later, the doctor performs a procedure that another patient has said he doesn’t want, saves his life, and hears an expression of gratitude layered in ambiguity.
"No ethic in medicine is absolute," came one reply. I thought it was an insight from the source of the retweet until I came across the sentence in rereading the Times story. Somehow the words hadn't stood out as memorable on first pass, and I’d skipped right by them. Which perhaps says something else about doctor-patient communication, and how what is said often is not what is heard or understood.
I underlined the comment and clipped the story, illustrated with an image of white doctor holding a patient of color in his arms. The words are worth remembering: “No ethic in medicine is absolute.”
Cardiologist and author Sandeep Jauhar packed a lot into the Times story, not the least of it being an assessment of the consequences of medicine’s transition, roughly in the past half-century, from a “Father Knows Best”-style paternalism to heightened respect for patient autonomy. This has become increasingly true with the Internet’s emergence as a source of boundless medical information.  “As doctors,” Jauhar writes, “we no longer ‘care for’ as much as ‘care with’ our patients.”
This is widely seen as an improvement, but it increases the importance of good communication and trust in the doctor-patient relationship. And good communication and trust are something of a privilege.
Jauhar’s piece caught me in a moment when my head already was spinning, as it does when I descend a bioethics rabbit hole. This particular rabbit hole was a second reading of Rebecca Skloot’s “The Immortal Life of Henrietta Lacks.” The book is extraordinary; its insights into race, research ethics and the doctor-patient relationship are a gift to someone like me trying to grasp the privilege of trust in American health care. I knew in reading “Immortal Life” the first time that I'd be back.
Paternal medicine is a phrase with many meanings, perhaps too many to be truly useful, but Jauhar captures it in a quote from the mid-1800s American Medical Association code of ethics citing physicians' "sacred duty (to) avoid all things which have a tendency to discourage the patient and depress his spirits." 
In the 19th Century, and into the early 20th, American doctors were not the highly trained professionals they are now, and were not held to uniformly high ethical standards. The endowment for medical students at Harvard was a small fraction of that for seminarians, which is hard to imagine more than a century later. In days before vaccines and penicillin, prayer carried higher priority.
Over the course of the 20th Century, doctors and medical scientists made astounding advances in curing and caring for humans, many of them learned on the battlefields of world wars, and yet there’s a wariness, a guardedness, among some medical professionals in engaging the very people they serve. Medical knowledge and specialization have become so advanced that illnesses which killed just a generation ago are cured or lived with now. (I know this first-hand from my daughter's cure by stem cell transplant.) But here’s the price: the better that doctors have gotten at understanding diseases and symptoms, the less they know many of their patients -- at a time when decision-making ostensibly is becoming more collaborative.  
And here’s a problem: decision-making really is becoming more collaborative when there is a trust relationship, but for those systemically marginalized for racial, economic or other reasons, trusting your doctor is as challenging as paying for your care. It’s nice to think of quality health care as a right, but too often it’s a privilege.
I can’t help but connect the story of Henrietta Lacks with the Jahi McMath tragedy. Jahi is the teenager declared brain dead in Oakland, California, in December 2013 following complications from throat surgery related to apnea. Jahi was declared brain dead by five doctors and released to the coroner as intermediary in a bizarre transaction of responsibility. Jahi’s mother did not believe her daughter was dead so long as her heart was beating, fought in court to take possession of Jahi, and continued to keep her mechanically sustained at an undisclosed location with the aid of an undisclosed care team.
Has there even been another case where a coroner turned over a person who had been declared dead, but remained on ventilation with a feeding tube, to a family? Is this patient autonomy at its most extreme, to indefinitely sustain a person who has been declared dead by doctors?
The story is heartbreaking, and it is part of this legacy of distrust.
Rhea Boyd, a pediatrician and child health advocate in the Bay Area of Northern California, wrote insightfully about this: “In America, there is a history that makes dying while black a particularly contentious issue, one fraught with fear of mistreatment and maligned intention and one that must be addressed openly, honestly and with compassion.” 
"The Immortal Life of Henrietta Lacks" helped me to understand a little better the profound mistrust of the medical profession in a historically marginalized community. Lacks was treated for her cancer at Johns Hopkins in Baltimore. She died in 1951 but was survived by the cancer which killed her. More than a half-century after Lacks died, her cancer cells continue to be used in science. Many people are alive today because of medical advances possible because HeLa cells were available to researchers.
Just as it is worth remembering how far medicine has come in 100 years, it is worth considering why. It was at Johns Hopkins where the standards for American students of medicine were first elevated. And yet, at Johns Hopkins in 1951, Henrietta Lacks’ cancer cells were taken and widely shared without her knowledge and without her consent. A young mother with four children, pregnant with another, with a philandering husband and strange and painful things going on in her body, Henrietta turned to Johns Hopkins for help. Most hospitals did not treat black patients; Johns Hopkins was an exception.
"This was 1951 in Baltimore," Skloot writes, "segregation was the law, and it was understood that black people didn't question white people's professional judgment. Many black patients were just glad to be getting treatment, since discrimination in hospitals was widespread.
"There's no way of knowing whether or how Henrietta's treatment would have differed if she'd been white. According to (Hopkins physician) Howard Jones, Henrietta got the same care any white patient would have; the biopsy, the radium treatment, and radiation were all standard for the day. But several studies have shown that black patients were treated and hospitalized at later stages of their illnesses than white patients. And once hospitalized, they got fewer pain medications, and had higher mortality rates."
Sandeep Jauhar writes in the Times of the transition in the medical profession from paternalism to placing a high value on patient autonomy. “The doctor-patient relationship is founded on trust,” Jauhar writes, “and any instrument of paternalistic interference not only compromises the relationship but also can erode faith in the profession.” 
This increased respect for patient autonomy and the move in medicine toward shared decision-making is a step toward “a healthier balance of power,” in the opinion of Robert Truog, physician and director of clinical ethics at Harvard Medical School. “With this approach, physicians are seen as having expertise and authority over matters of medical science,” Truog writes, “whereas patients hold sway over questions of values or preferences.” 
Skloot chronicles this paternalism-to-autonomy transition, and the emergence of informed choice, in a profound way -- especially profound for Henrietta’s children, who knew little about their mother, or the enduring and global use of her cells, and lived in poverty while others made money from HeLa. It is an especially troubling coincidence that the first facility to mass produce HeLa cells, amid urgent need in a polio epidemic, was established at Tuskegee Institute -- as Skloot notes,  “on the same campus -- and at the very same time -- that state officials were conducting the infamous Tuskegee syphilis studies.
Since Tuskegee and other events began to shine a light on American medical research, the informed consent of patients and their families has become required in both medical practice and the research that informs it. Henrietta never volunteered for research, she simply went for help but became an historic figure representing what is best and worst about medical science. And while “Immortal Life” tells many stories, at its center are the parallel stories of the HeLa cancer cells and the children unaware of this maternal legacy.
Twice in “Immortal Life,” these parallel paths cross to powerful effect. The first is during Henrietta’s autopsy.
“Mary stood beside Wilbur, waiting as he sewed Henrietta’s abdomen closed,” Skloot writes. “She wanted to run out of the morgue and back to the lab, but instead, she stared at Henrietta’s arms and legs -- anything to avoid looking into her lifeless eyes. Then Mary’s gaze fell on Henrietta’s feet, and she gasped. Henrietta’s toenails were covered in chipped bright red polish. ‘When I saw those toenails I nearly fainted. I thought, Oh jeez, she’s a real person. I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that all those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.’ ”
Toward the book’s end, a scientist who has made extensive use of the HeLa cells gives two of Henrietta’s now-adult children a tour of his lab and a view of the cells. The gesture is as generous as it is overdue and inadequate. “Deborah and Zakariyya stared at the screen like they’d gone into a trance, mouths open, cheeks sagging,” Skloot writes. “It was the closest they’d come to seeing their mother alive since they were babies.”
In a specialized medical world, it has become increasingly difficult for a doctor to do both clinical work and serious research, but pure science can easily lose sight of the patient, and the purpose. This is a big loss.
“Everybody always say Hopkins took black folks and experiment on them in the basement over there,” says Henrietta’s daughter Deborah. “Nobody could prove it so I never did believe it really. But when I found out about my mother cells, I didn’t know what to think except maybe all that stuff about them experimentin on people is true.”
How is it possible that a woman dies but the cancer cells that killed her survive for generations? Even while learning the truth of this, I can’t comprehend it. 
Standing near where Henrietta is buried, her cousin Fred Garret says to Skloot, “Do you think them cells still livin? I talkin bout in the grave.” Then Garret laughs “a long, rumbling laugh,” Skloot writes. “Hell naw, I don’t guess they are. But they’re still livin out in the test tubes. That’s a miracle.”

Cross posted at