Lighting a Fireball Under Informed Consent

The experts and their PowerPoints gathered in the nation’s capital. The purpose was to advance an important effort by the Institute of Medicine to improve communication and understanding between doctors and patients and researchers and subjects. No simple task, this.

Best practices were discussed, and one received special attention. Alas, amid the downpour of information during Monday’s daylong webcast of the Institute of Medicine’s workshop on informed consent and health literacy, I seem to have missed this most important of best practices.

I did hear that this particular best practice “increased comprehension better than the other modalities.”

And perhaps that’s why I missed it. I don’t speak in modalities, and that phrase highlighted for me the potholed intersection of informed consent and health literacy. Further complicated by language barriers, informed consent becomes a foreign concept in a time one presenter called “the wild west of data.”

The Institute of Medicine workshop was impressive, informative, perhaps even visionary, and concluded with a call from Dr. Michael Paasche-Orlow, professor of medicine at Boston University, not for simple tweaks but for a course change in scientific and medical culture -- “from persuasion to pedagogy.” (There’s one of those words again; I believe he meant a change from pleading to teaching.)

In particular, this course change demands attention to improved communication skills, so that when a doctor like Jeremy Sugarman of Johns Hopkins tells his patient she has “fibroids in the uterus,” and she hears “fireballs in the uterus,” he’ll know it and correct it.

Overcoming such language barriers, said Dr. Alicia Fernandez of UC San Francisco, “will improve informed consent for all patients.”

According to Fernandez, 21 percent of Americans speak a language other than English at home, and she cited a University of Washington study in presenting a troubling snapshot of medicine as practiced through interpreters. More hopefully, she said, when physicians are bilingual, “communication is more likely to be patient-centered.” 

Sugarman cited his patient’s “fireballs in the uterus” to humorous effect. Another patient heard him describe the “insensitive care unit,” and a diagnosis once was quoted back to him as “sick-as-hell anemia.”

But a malaprop is only a problem if the doctor doesn’t know he or she has been misunderstood. If the doctor knows, a discussion and better understanding might follow. And even, perhaps, truly informed consent.

Even among scientists and medical professionals, the obligations and purposes of informed consent are not universally clear, in part because they are not always the same. Consent is better understood as a process than a form, and it differs greatly for a patient than for a research participant (for whom there may be no expected benefit from what is being consented to). And consent forms are full of legalese.

“I have a lot of problem with the writing (in consent forms),” said Chris Trudeau of the Michigan-based Thomas M. Cooley Law School, whose PowerPoint included the before and after of a consent document. It was indecipherable in its original form, significantly more accessible following his surgical removal of polyps and the like. “Lawyers are not good at plain language. We’re good at protecting our clients, but lawyers don’t think about patients understanding.” 

The workshop itself neglected patients. Notably missing were patient and community perspectives, but to the credit of the members of the roundtable, and their chair, Dr. George Isham, they won’t long be absent from this process.

“What I see missing in this room are patients,” said Dr. Kenneth Saag of University of Alabama-Birmingham, “and people with a high school education or less, and there’s not as much diversity here as we’re dealing with.”

Sandra Crouse Quinn, a professor at the University of Maryland, noted that institution’s effort to address low participation in research by people of color via the program Building Trust Between Minorities and Researchers. “Minorities increasingly are willing to participate in research,” she said, “but they’re not participating.”

“A lot of us are too close to these issues,” Isham said toward the workshop’s end, “and don’t see the forest for the trees.”

With patient and community perspectives, the focus might improve.

See more about the workshop here. 

A Stethoscope for the Soul

The book title was familiar: “The Soul of Medicine.”

Sherwin Nuland, the influential surgeon, bioethicist and author, who died this spring, gave that name to his 2009 collection of stories, subtitled “Tales from the Bedside.”

The title is thoughtfully provocative. Does medicine have a soul? Do people? And what happens in the doctor-patient relationship when one answers yes and the other no? As I said, the title is thoughtfully provocative.

And here it comes again. “The Soul of Medicine”  (Johns Hopkins University Press) is also the title of a 2011 collection of stories co-edited by John R. Peteet and Michael N. D’Ambra and used as the text for “Spirituality and Healing in Medicine,” the course they teach at Harvard Medical School.

Two books with the same title is a little confusing, but it’s a healthy confusion. Especially if Peteet, D’Ambra and spirituality-minded colleagues are correct about “widespread concern that medicine may be losing its soul.”

“Prominent scientific critics such as Richard Dawkins have painted religion as an inherently biased phenomenon defined by irrationality, and anything associated with it as the antithesis of scientific progress,” writes Marta Herschkopf, a Harvard-trained physician, Yale- and Oxford-trained theologian and contributor to “The Soul of Medicine.” 

“No doubt influenced by such rhetoric, many physicians and administrators feel that spirituality has no place in a medical curriculum or in medical practice. Despite a significant body of research arguing to the contrary, they do not see religion and spirituality as directly contributing to human health and therefore consider it irrelevant.” 

I was reading Peteet and D’Ambra’s book as a three-day course in bioethics began at Harvard Medical School, which I attended as a member of the Harvard Community Ethics Committee.

Neither Peteet nor D’Ambra are faculty for the bioethics course, and their book was not cited. And yet theirs was the text I thought of during a break. A chaplain who had asked several probing questions during a session wondered if she had asked too many. She hadn’t, I assured her. Indeed, I welcomed the questions. They were insightful and brought a wondering and spiritual component into the dialogue.

Ethical conflicts in medicine, at least the ones I’ve studied as a member of the Community Ethics Committee, seem to sprout from communication problems and a disconnect between medical expertise and patient values. Since the doctor-patient relationship would be where “medicine may be losing its soul,” understanding and engaging those values is important.

Peteet and D’Ambra edited the collection, wrote the preface, and collaborated on chapters with theologian and palliative care expert Michael Balboni and psychologist, ethicist and rabbi Terry Bard. For other chapters, they brought together medical professionals and others with expertise on Judaism, Hinduism, Islam, Christianity, Buddhism, Eclectic Spirituality, Christian Science Jehovah’s Witnesses, A Secular Perspective and a historic context for this complex subject.

According to internist and ethicist Thomas Huddle, quoted in the chapter Ethical Considerations and Implications for Professionalism: “In asking for professionalism, that is, for just, altruistic, conscientious and compassionate physicians and trainees, medical educators are asking for morality, which is at bottom asking for more than expertise.”

Gowri Anandarajah, a family practice physician affiliated with Brown University, turns to Gandhi for insight into Hindu perspectives on medicine: “God does not come down in person to relieve suffering. He works through human agency. Therefore, a prayer to God, to enable one to relieve the suffering of others, must mean a longing and readiness on one’s part to labor for it.”

Perspectives in “The Soul of Medicine” can be contradictory, but such is the nature of the various faiths and spirituality. 

Dr. David Ring of Massachusetts General Hospital helps explain why science and religion/spirituality are such an uneasy pairing.

Ring writes: “The medical facts established by scientific experimentation are not typically disputed among various faiths and traditions. The realm of spirituality in medicine begins at the limits of science, at least when operating in the biomedical model of illness.”

Later, he adds: “Faith -- believing that one knows or understands something in the absence of sufficient experimental evidence -- is often counterproductive. Faith in the sense of optimal ‘spiritual’ health, on the other hand, is an integral part of wellness in a way that is measurable by experiment.”

Through studies of end-of-life care and treating human suffering, the Community Ethics Committee, which hosts this blog, repeatedly considers whether and where spirituality and religious faith belong in the contemporary dialogue about care.

Committee members past and present include include a rabbi, an imam, atheists, a Catholic chaplain, a Methodist minister, a professor at a Christian college and a Unitarian. With such a range of perspectives and values, clarity of language and meaning become crucial, says co-founder Carol Powers.

The Community Ethics Committee’s top priority is “the patient in the bed,” Powers has said often. But what of those with the daunting challenge of diagnosing and explaining medical problems, and helping patients come to decisions that respect both personal values and what is medically possible?

According to “The Soul of Medicine: “Because the behavior of physicians is largely self-regulated, encouraging them to seek as many resources as possible, including spiritual ones, will, one hopes, increase their ability not only to continue to strive to be professional, but also to find more lifelong career satisfaction.”

This post also appears at www.paulcmclean.com.

A Ration of Hope

A year ago, a Pennsylvania child expected to die without a lung transplant received the needed organ through the tireless advocacy of her parents, change.org and media campaigns, the intervention of clergy and politicians and a judge’s ruling.

That she is alive today is an extraordinary and heart-warming story of the medically miraculous, one recounted by CNN and NBC News, and the child’s case now has prompted a policy change ending discrimination against children as candidates for adult lungs. Not that it will end discrimination; amid organ scarcity, that isn’t possible. Deserving people die every day awaiting new organs.

Harvard’s Community Ethics Committee recently completed a study of criteria for listing potential pediatric transplant recipients. That process left me with a new appreciation for distributive justice and rationing amid organ scarcity, the competing demands for privacy and decision-making transparency, and respect for clinicians who must determine who is sick enough to need a new organ but otherwise healthy enough to make transplantation successful.

The policy change was among several announced Monday by the board of directors of both the United Network for Organ Sharing and the Organ Procurement and Transplantation Network. The board “approved on a permanent basis a policy change allowing transplant programs to request additional, exceptional priority for adolescent or adult donor lung offers for transplant candidates age 11 or younger. The action followed additional review of a temporary exception adopted in 2013.”

As of Tuesday morning, there were 78,811 active candidates on the waiting list for organs, according to OPTN. How many of them will receive organs is unclear, but most will die waiting. From January through March of this year, 6,978 patients were transplanted with new organs. 

There are a few things that the CNN and NBC stories didn’t tell me:

Who died so that the Pennsylvania child might live? By my estimation, four people died. Two were the lung donors. When the first transplant failed, the child received another.

The other two people died on the same organ waiting list that the child moved to the top of. Lungs were not available to them, because the child received them. This is the norm in transplantation; many more die waiting than ever get to transplant. The court did not consider this in its ruling.

How many people who signed the change.org petition in support of the child have subsequently signed up as organ donors? If it’s anything like the general public, the percentage is small. Many more say they support organ transplantation than actually “opt in” as potential donors. 

Is it simply that transplant policy was wrong, and children make good candidates for surgically modified adult lungs? Or do adult lung diminish chances of success when transplanted into a child?

Would an “opt out” policy work in the United States? That is, could organ donation be assumed unless a person specifically opted out of the system -- as is the case in several countries?

How is it that CNN and NBC News could report this story without mention of rationing or distributive justice? Americans tend to support the life-saving nature of organ transplantation, but oppose rationing. And we can’t have it both ways.

Emotion, Reason & the Ethics Consult

Over the coming weeks, I hope to share key take-aways from the Harvard Center for Bioethics’ three-day course in clinical bioethics. 

Here’s a start. At Massachusetts General Hospital, Guy Maytal holds these titles: associate director of ambulatory psychiatry, director of primary and urgent care psychiatry, and psychiatric liaison to palliative care. He also is involved in ethics consults.

You wear that many hats, there is bound to be confusion: So it’s not unusual for him to be called for a psych consult on what is essentially an ethics matter, or for an ethics consult on a psych matter. The lines blur. Maytal once received a call for a consult “because the patient cried.” Which says more about a clinician’s inability to sit with emotion than with any problem on the patient’s part.

Maytal’s lecture at the Harvard bioethics course focused on reason and emotion in clinical ethics and included this useful insight: “In the brain, there is no division (between reason and emotion); there’s a balancing act.” 

Maytal is a masterful lecturer. Here are his essential tools for an ethicist in a consult:

• Bring awareness to your reactions
• The role is the target, not the individual
• It's not personal
• What do I make it mean?
• Patients come not with problems, but with solutions that no longer work

The patient perspective in that last one puts into context how a clinician might confuse psychology and ethics consults. The lines blur, indeed.

Use of Video in End of Life Decision-Making: a Concern

Videos have come to be regarded by many as a valuable aid in helping patients make decisions about their care when such videos supplement a conversation with a physician that explains possible treatment options. A number of research studies (here, here and here) suggest that such use of videos can lead to more informed patients and, for patients approaching the end of life, a greater likelihood of patients opting for comfort care rather than life prolonging treatments.

I would like to express one source of unease with the use of video in this context and identify a possible weakness in the associated empirical studies.

Several studies feature a patient factual assessment, a set of multiple choice and true/false questions about relevant medical care. Those who watch the videos and receive a verbal explanation of treatment options generally score better on this assessment than the control group, who receive only the ordinary verbal explanation. The authors of the studies conclude from the assessment scores that the video group are more informed about the relevant treatment options, and naturally infer that this group’s greater preference for comfort care over life prolonging care is to be accounted for in terms of their being more informed than the control group. This offers a positive outlook for the place of video in supplementing the physician’s verbal explanation as a means for patient education and empowerment:

When faced with the possibility of their cancer progressing, participants with malignant glioma who viewed a video of the various goals-of-care options in addition to listening to a verbal description were more likely to prefer comfort measures and avoid CPR, were more knowledgeable regarding the subject matter, and were more certain of their decision when compared to patients only hearing a verbal narrative. (“Use of Video to Facilitate End-of-Life Discussions With Patients With Cancer: A Randomized Controlled Trial”)

An alternative interpretation of the evidence is possible, however. Might not the participants be having an emotional reaction to the video, and might it not be this emotional reaction, not their being more informed, that is causing their comfort care preference? And might not the video group’s generally remembering more information about medical care, as demonstrated in the multiple choice and true/false assessment, also be caused by their emotional reactions to the video? On this reading, it is an emotional reaction to the videos, not their educational effect, that is causing both phenomena identified by the studies - the higher assessment scores and the preference for comfort care. If this were so, a reevaluation of the role of video in informing patients would appear in order.

In order to forestall this kind of objection, the authors of one study note that “Participants' comfort level with the video is … reassuring against this possibility [of an emotional reaction’s causing the treatment preference].” One might also question whether an emotional reaction can improve scores on a factual recall assessment. How could that be?

I would note, however, that self reported levels of comfort are an unreliable guide to a person’s emotional state, even under normal circumstances, and there is empirical literature suggesting that emotional reactions may indeed lead to more accurate retention of information, a phenomenon that might better explain the video watchers’ scoring better on the factual assessment. It is well known in the field of advertising that coupling a visual emotional trigger with factual information can greatly enhance future recall of that information. This is not a promising analogue for doctor patient communication about end of life care options.

The authors of the first video study referenced above concede that “an emotional response to the video could have influenced participants’ preferences,” and immediately follow with “To ensure that the video was not biased toward any particular perspective, the video content underwent extensive scrutiny by numerous oncologists, intensivists, palliative care physicians, and ethicists with particular expertise in this field.” But the problem is that scrupulously guarding against bias in a video does nothing to address the possibility that an emotional response is influencing participants’ preferences.

Perhaps the authors’ point is that an accurate video that may indeed provoke an emotional reaction nonetheless has educational value when viewed with a physician in the context of a discussion about treatment options. What can be wrong with seeing for oneself the unbiased reality of each option, even if this elicits an emotional reaction?

This may be the crux of the issue. One difficulty is that video images, however deliberately produced and contextualized, and however true to the patient’s prognosis, have a power to subvert other, more subtle imaginative resources that we draw from in making informed personal choices. The professional lens through which a physician views and interprets an image of a patient receiving treatment is utterly different from that which shapes a patient’s apprehension of the same image. By contrast, with the standard model of doctor-patient communication, a skilled physician can determine her patient’s reception of her explanation of treatment options and take account of this reaction in guiding conversation. The reading of emotional cues and the making of adjustments may not be possible with a video as part of the interaction, giving less assurance that patient reactions are understood, acknowledged, and balanced. The role of emotions in patient decision-making is so complex, and the content of the videos (I’ve seen them) powerful enough that a shift in patient preferences of the kind observed in these studies should give us pause.

While all acknowledge that aids to genuinely informed end of life decision making are increasingly necessary, perhaps the jury ought still to be out regarding the role of video in this context.

Friendless & Voiceless in Massachusetts

Secure in his chair on a Boston critical care ward, the middle-aged man was getting his hair cut. This meant nothing to him. To the best of a doctor’s ability to know such a thing, there was no meaning-making left for the man, since the heart attack that had rendered him “probably permanently unconscious.”

And yet the haircut meant something to the hospital staffer who provided it. Indeed, it meant everything. In particular, it meant someone in the worst of circumstances and alone in the world could find care at this hospital. Not just treatment, but care. And that’s good for morale.

What is not good for morale is continuing treatment that -- again, to the best of a doctor’s ability to know such a thing -- does a patient no good, and may do harm. For this patient, that transition loomed.

The man strapped into the chair, unable to sit upright on his own, is an immigrant from the Far East with no apparent family in this country. He has no insurance and little money. He clearly did not anticipate a catastrophic heart attack, and so put nothing in writing about his wishes for medical care. Neither had he designated someone to speak for him in such an event.

He is what is known as an unrepresented patient, or a patient without a surrogate decision-maker. Both terms sound coldly clinical and lawyerly to me. Neither sounds especially human.

I prefer another term sometimes used: unbefriended. This term strikes some colleagues on the Harvard Community Ethics Committee as overly judgmental, as though the patient were unworthy of friends. But to me unbefriended means he has no one who knows or cares enough to speak for him, and desperately needs someone. Friendless and voiceless is no way to be.

Autonomy is an important principle in medical ethics, but what is autonomy for a person no longer able to think or speak, and with no one to do that for him? What treatment is in his best interest -- Nothing? Everything? Till when? And who should decide? Should it matter that he has neither money nor insurance?

This man’s care, ongoing when it was presented during an ethics consortium at Harvard Medical School’s Countway Library, seemed more a quandary than a question of ethics. Indeed, ethical issues may relate more to the care team, and its morale when doing good or doing harm becomes especially muddled.

Hospitals, especially intensive or critical care wards, are seeing more of this type of patient, often homeless substance abusers who have scared off anyone who might once have cared for them. How does a hospital staff serve the best interests of a patient if they don’t know the first thing about that patient’s values, and have no easy way of finding out?

The man will never leave the hospital. Because he is uninsured, no rehab facility will take him. Till miracle or death, he is the hospital’s responsibility.

What this hospital staff knows is that the patient is “probably permanently unconscious,” but his heart is strong. He already survived emergency surgery to clear an airway obstruction.

With the patient’s mobile phone, social workers did remarkable detective work. They found someone in New York transient housing who knew the patient by name and, though unwilling or unable to step into the decision-making void, pointed them toward the estranged wife in the Far East. She spoke no English and was unwilling to decide for her ex-husband. The social workers discovered a son who knew nothing of his father. 

A sibling of the patient also was found, and through an interpreter, gave the hospital permission to perform a life-sustaining surgical procedure. It was hoped there might be time for the son to find the resources to travel to meet his father, which became a factor in considering the patient’s best interests.

When there is no surrogate decision-maker, hospitals in Massachusetts are left to decide what is in such a patient’s best interests or to request a court-appointed guardian. But the latter process is slow, often too slow to effectively help either the patient or those caring for him.

In such cases, appointed guardians in Massachusetts tend to “err on the side of life,” which is often the best way to err. But that can come to mean erring on the side of harm, and treatment that prolongs suffering.

Might it sometimes be unethical, and unacceptable, to err on the side of life?

That could be the essential question for the Community Ethics Committee as we study patients without surrogates, also known as the unrepresented, or as I prefer to think of them: the unbefriended.

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 www.paulcmclean.com