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

Friday, January 31, 2014

The Morality of Hastening & Prolonging

You could teach a class in medical ethics using only “Five Days at Memorial” and “Knocking on Heaven’s Door.”
And someone really should,  ideally to first-year medical students. Their future patients also would be well-served to consider the lessons of these books -- seminarians, too -- but let’s start with physicians-to-be and the world they are inheriting: One in which 31 percent of Americans believe doctors should “do everything possible in all circumstances” to save a life, according to Pew Research, and as many or more believe doctors should be legally allowed to help people die.
Imagine it will be your job to somehow square those two realities, and to communicate skillfully enough to know and understand which patient you are advising and treating. 
And welcome to med school.
The authors of “Five Days at Memorial” and “Knocking on Heaven’s Door” are journalists. Sheri Fink also is a physician who has written a profound, epic story of medical care in the catastrophe of nature and neglect that was New Orleans in the immediate aftermath of Hurricane Katrina. Katy Butler repeatedly traveled from Northern California to Connecticut over six years to support her elderly mother in carrying for her father, a stroke victim whose time finally ran out in spite of his pacemaker’s persistent pulse. (“Five Days at Memorial” is a finalist for the National Book Critics Award in nonfiction.)
Both stories will break your heart, but their higher purpose is to open your eyes. One is a compelling look at what we ask of doctors and nurses in the most extreme of circumstances. The other is full of what we neglect to ask at our peril. Both effectively consider contemporary medical ethics, underscore the importance of engaging and understanding them, and walk clear-eyed into the minefield that is mortality in America.
What is so valuable about these books, and why I link them, is they are exceptionally well-told cautionary tales for a pluralist culture in which mortality can be seen more as a challenge to be overcome than a common fate.
The books do not moralize, they are not sermons on right or wrong, not even in the case of patients euthanized in New Orleans (a grand jury did not indict). You will make your own judgments, but you’ll make them with facts, real information, and even a sense you were there.
The truth is, patients were killed at Memorial, in extreme circumstances, but not of their own choice. Whether you justify, condemn or grudgingly accept the actions of the doctors involved will depend in part on how well you understand their circumstances, and providing that understanding is something Fink does astoundingly well. (I, for one, oppose giving physicians a legally sanctioned role in directly and intentionally hastening patient deaths, and yet I’m untroubled by the grand jury’s decision not to prosecute in the Memorial killings. If there’s good away around ambiguity in such a case, I haven’t found it.)
“One of the greatest tragedies of what happened at Memorial,” Fink writes, “may well be that the plan to inject patients went ahead at precisely the time when the helicopters at last arrived in force, expanding the available resources.”
“Five Days at Memorial” tells many stories. One is the experience of patients and medical staff absorbing the horror wrought by Katrina and resulting in the killing of patients who, it was believed, amid a sense of systemic neglect, could be neither evacuated nor abandoned. Another details the attempt to apply justice for the killings. The third gives a historic sense of medical ethics, from Hippocrates through Tuskegee, and considers the events at Memorial in this context.
Given widespread distrust, fueled by disparities and inequities of class and race, government officials and medical professionals alike can be wary of engaging the public with difficult ethical issues that might stoke “death panel” fears. It’s one thing to look at the events of Memorial in retrospect, quite another to imagine decision-making in a hypothetical scenario.
And so an important lesson of “Five Days at Memorial” is that medical professionals cannot afford to exclude the public from such questions just because the answers are messy and volatile.
That’s what I found so compelling in the grand jury’s recommendation against prosecuting the medical professionals involved in euthanizing patients. Amid all the post-Katrina finger-pointing, the grand jury provided insight into what an informed public believed. And that informed public was forgiving.
Other studies cited by Fink indicate a public understanding that ideas considered offensive and unacceptable in normal times -- for example, rationing of ventilators -- could become unavoidable in a catastrophe.
“Sometimes individual medical choices, like triage choices, are less a question of science than they are of values,” Fink writes. “In a disaster, triage is about deciding what the goals of dividing resources should be for the larger population -- whether maximizing number of lives saved, years of lives saved, quality of life, fairness, social trust, or other factors. The larger community may emerge with ideas different from those held by small groups of medical professionals.”
Fink quotes Roger Bernier, a senior advisor at the US Centers for Disease Control and Prevention, as saying that non-experts “are in the best position and in the most nonpartisan position to weigh competing values. 
Why, then, is the public not engaged more regularly?
“I’m not sure we believe in democracy in America,” Bernier tells Fink. “We don’t make good use of the people. We don’t make good efforts to access public wisdom on public policy choices.”
Where was the public wisdom in developing the pacemaker? It is easy to see that the public interest has been served by a device adding years to many lives, and yet while “more time” is accepted as the benefit, consideration of quality of life in that added time has been left to retrospect.
Emphasizing this insight is part of the gift of “Knocking on Heaven’s Door,” which  resonates with the lament: I wish I knew then what I know now. As such, it is a story to help others “know now,” before fateful decisions are made. It is a reminder to ask the right questions and testifies to the importance of patient advocacy. 
And in a highly personal way, “Knocking on Heaven’s Door” argues that “more time” is not necessarily the moral and right answer. What I “know now,” aided by Butler’s insights, is that the answer is forever ambiguous when the question involves medicine and mortality. 
Consider, as Butler does:  “Not having a pacemaker would not have guaranteed my father a quick or easy death. But having a pacemaker deprived him of his best chance for one.”
Butler writes this story with a wrenching beauty, and packs so much into a sentence.
“My parents were contemplating more than a pacemaker,” she writes. “They were contemplating how much suffering they would bear in exchange for more time together on earth. And they did not know it.”
Butler creates a revealing chronology of technology that through the latter half of the 20th century and start of the 21st has prolonged lives and the dying process. As Butler writes, development of the pacemaker was but one advance that led to the creation of a whole new specialty in medicine, intensive care, beginning with the conversion of a hospital ward in Kansas City, Kansas, devoted to care of the elderly and impoverished. As critical, or intensive, care, it has become a place of remarkable care of lives most precarious, but it has become as well a place that speeds the burnout of nurses caring for the death-defying unconscious while families pray indefinitely for miracles.
Unlike Fink and “Five Days at Memorial,” Butler is very much a witness and a participant in her story of the consequences of medical decisions inadequately considered and understood. Installing a pacemaker gave Butler six years with her father that she wouldn’t have had without it; but other aspects of that gift were being witness to a merciless toll on her mother, her father’s painfully prolonged process of dying, and how much simpler it is to install a life-saving technology than to disconnect it.
There is no precise point at which it is clear that Butler’s father should have died, but the time passed long before his aged, confused, tired being stopped waiting for a lithium battery to expire.
I found it perplexing, and troubling, that a cardiologist would consider the act of turning off a pacemaker to be unacceptably “playing God” when installing it in the first place was not. It’s as if the physician himself hadn’t actually thought this through, which is perhaps more common than I’d like to think.
“Nothing much will change,” writes Butler, who spread charred electric coils with the bone and ash of her father, “until we pay doctors and hospitals when they appropriately do less as well as we do when they inappropriately do too much.”

Wednesday, January 22, 2014

Palliative Care and the Art of Listening

In "Lives Less Ordinary," Jerome Groopman's powerful and timely look at the complex care of chronically ill children, the first child profiled is being treated at Boston Children's Hospital for a rare disorder of the mitochondria.

This is an interesting coincidence, as a disputed diagnosis of mitochondrial disorder has been central to a nasty recent custody dispute between the hospital and another family. 

Among other things, that was a cautionary story about the consequences of communication and trust badly broken down. An ethics consult was called, and recommendations made, but it is unclear how well they were heard. 

And so this story by the endlessly insightful Groopman serves as a welcome view into doctor-patient/family communication at its best. And the families sure need it.

Groopman’s story, in the January 20 New Yorker magazine, is subtitled "Chronically ill children are living longer than ever. How should we care for them?"

In answering that question, the starting point would appear to be: first listen, then do no harm. That is, get to know the patient and what he or she values. So it is no coincidence that Groopman, professor of medicine at Harvard Medical School and chief of experimental medicine at Beth Israel Deaconess Medical Center in Boston, focuses on the palliative care specialty. Taking the time to know the patient is a key aspect of the palliative speciality.

Don’t miss Groopman's story. Here is a taste of what you'll find.

The PACT, or the Pediatric Advanced Care Team, is a group of physicians, nurses and social workers from Boston Children's Hospital and the Dana-Farber Cancer Institute. PACT, Groopman writes, "is among a growing number of hospital programs that ... have three goals: to coordinate care, help families make difficult decisions about treatment options, and ease the child's pain and suffering."

One PACT member is Christina Ullrich, an attending physician at both Children's and Dana-Farber. This comment from Ullrich stood out to me: "As a doctor, you focus on pathology and physiology; you learn pharmacology and how to order drugs. The social and psychological dimensions of care are often not well respected. But I learned that you can't treat a child's pain effectively without understanding her anxiety and her social situation. It's not just a matter of writing a prescription."

Groopman also provides insight into why palliative remains marginalized, undervalued and widely misunderstood: in four years at Harvard Medical, students get only a half-day training in hospice and palliative (which overlap but are hardly the same specialty): ER staff, likely with no real knowledge of the patient, cast judgmental looks at the sometimes high dosages of pain-killers; and, because palliative stresses relationship, it is a more complicated billing than, say, surgery or chemotherapy.

Because palliative specialists get to know the patient and family, they develop a relationship that can become especially important when hard choices must be made amid diminishing treatment options. 

Near the end of his story, after Groopman briefly describes the process of completing a form known as MOLST, for medical orders for life-sustaining treatment, a patient's mother says: "If his heart stops, it's time to let Avery go. He has fought such a hard fight; he will let me know when he is ready to go."

Only in a relationship built on trust can such a conversation take place.

Another coincidence: While writing this story, I found a piece by Nathaniel P. Morris, a student at Harvard Medical who is emerging on the Boston Globe opinion page as a voice to pay attention to. Here he assesses the recent controversy over custody, communication and diagnosis at Boston Children’s.

Amid ambiguous demands and expectations, Morris writes, “health care providers must discern when to apply the powerful instruments at their disposal and when to carefully hold back. It often just comes down to clinical judgment, a skill I’ve yet to learn but I’m hoping to find in my education.”

Here’s hoping he doesn’t miss that half-day on palliative.

(Paul C. McLean, author of "Blood Lines: Fatherhood, faith and love in the time of stem cells," also blogs at

Friday, January 17, 2014

Life, Death & Governance

You think these are challenging days for the governor of New Jersey? Life is getting especially complicated for the governor of Ohio -- in the myriad meanings of the word.

Ohio Governor John Kasich is well respected by abortion opponents. and last summer signed both restrictive new pro-life laws and what was considered the “most pro-life budget in history.”

But it is not the value of life at its beginning that is increasingly demanding Kasich’s attention; instead it is how, and whether, the state punishes or forgives those who kill.

Early Thursday, Ohio executed the admitted rapist and murderer of an 8-months-pregnant woman. What made this newsworthy, beyond the simple fact of state execution, was the means employed: a new lethal cocktail of drugs, used for the first time with little real sense of how much pain they would inflict or how long they would take to complete the task.

Why is this of interest, on a blog devoted not to politics or criminal justice but to community understanding and perspectives regarding medical ethics? Because of the focus on the continuum of how life is valued in American society, and how prominent the extremes have become.

While Ohio balances its belief in the justice of capital punishment with charges that it lacks a humane means to carry out the executions, hospitals in both California and Texas in recent weeks, and for very different reasons, have mechanically sustained patients determined by doctors to be dead. (Nowhere are end-of-life politics in sharper focus than Texas.)

Pardon the leap, but the most recent study by the Community Ethics Committee, to be submitted soon to the ethics leadership of Harvard Medical School and its teaching hospitals, concerns transparency and decision-making in listing for organ transplantation.

And without going into details of that unfinished study, the very first question we asked ourselves was whether organ transplantation itself is a social good. The answer was yes by consensus -- but only if the organs were ethically harvested, and the selection of recipients both equitable and just.

That is to say, our one-word answer was unanimous but enormously complicated and nuanced.

Consider another case awaiting action by Kasich. The execution of the rapist and murderer of a child was postponed till July while the state determines whether it can take his organs for transplantation, as the man has requested. This would make an executioner of the transplant surgeon.

In this case, is organ transplantation a social good? That is the question facing Kasich, who has been quoted by the Columbus Dispatch as saying: “Ronald Phillips committed a heinous crime for which he will face the death penalty. I realize this is a bit of uncharted territory for Ohio, but if another life can be saved by his willingness to donate his organs and tissues then we should allow for that to happen.”

But wait, there’s more, as they say on the ads on cable news channels.

Another prisoner is asking Kasich for clemency. John Wise is not on Death Row, but instead is serving six years for killing his wife, a diabetic with chronic heart disease who was in intensive care following a triple aneurysm. “Although I had nothing but good intentions,” the 68-year-old man said in a sworn statement, “that is no excuse." Mercy is not an acceptable defense for killing in Ohio. 

According to the Associated Press, “A doctor testified that Barbara Wise wasn't terminally ill and appeared to be responding to treatment.” 

The story did not say what, precisely, the doctor meant by “responding to treatment.” I’d like to know more.

Only days before, called doctors “optimistic” about the condition of Jahi McMath, a day after the 13-year-old’s death certificate was signed by a California coroner.

Again, I’d like to know more, because life and death are somehow becoming harder to define, and optimism is not a word I often associate with a corpse. 

(Paul C. McLean, author of "Blood Lines: Fatherhood, faith and love in the time of stem cells," also blogs at

Monday, December 16, 2013

Children caught between conflicting diagnoses

Yesterday's Boston Globe tells the first half of a story and today the second half comes out.   Depending on who you believe, Justina is either being kidnapped by the hospital, or she is being protected against a form of "medical abuse" originating from her parents.

The loss of patient autonomy (Justina is a minor, I'm assuming she is still under parents' guardianship ?) seems to be the most disturbing part of this story. She is 16 now, so when she turns 18 will she be able to declare her patient rights to autonomy and check herself out of BCH? Figuring out when parents love for their children becomes abuse is so hard. When will she be able to continue her high school education and go on with her life, in whatever condition ?

Although DCF has a mission to protect children and families that is undeniably needed in certain situations, their seemingly unbounded power itself is unsettling. In a way, if parents want to take their own minor children home, perhaps to die for their parents' beliefs (religious or medical), I have to wonder if that is another way natural selection works. I'm always open to hearing arguments and alternative views, but above is my initial response to a difficult situation on all fronts.

What do YOU think ?

Sunday, November 24, 2013

Getting End-of-Life Care Right in MA

When people are willing to consider their own mortality, they tend to want to die at home. This is not, however, what often occurs. We don’t talk about dying, and we die more often than we’d like, or than is necessary, on a hospital critical care ward.

To its credit, Massachusetts is addressing this disparity. And it will involve a more central role for the palliative care specialty. This is a very good thing.

The Massachusetts Department of Public Health is in the process of creating what it terms Regulations Regarding the Information and Counseling about Palliative Care and End-of-Life Treatment Options.

What the DPH is hearing is that the chances improve to give people the “good deaths” they wish for when the palliative care specialty plays a more central role, and the medical system knows their wishes.

The DPH sought out testimony in reaction to a draft of these regulations, and last Thursday heard from the chair of the state’s Expert Panel on End of Life Care, the executive directors of the Conversation Project and MOLST program, among several others.

By coincidence, on the day of this testimony, a Pew survey found that “at a time of national debate over health care costs and insurance ... most Americans say there are some circumstances in which doctors and nurses should allow a patient to die. At the same time, however, a growing minority says that medical professionals should do everything possible to save a patient’s life in all circumstances.”

“In all circumstances” would seem to mean regardless what the patient wants or what the doctors think best. So for about 30 percent of America, according to Pew, allowing natural death to occur is always wrong, is never in a patient’s best interests, and what the patient or doctor say can be disregarded.

Among other things, that poll is indication of the complexity of dealing directly with end-of-life care, so DPH deserves some credit for following up on the recommendations of the Expert Panel. 

Among those testifying was Carol Powers, president of the nonprofit Community Voices in Medical Ethics and co-founder of the Community Ethics Committee (sponsors of this blog). Since 2007, decision making in end-of-life medical care has been central to much of the committee’s work.

Palliative care is widely misunderstood, and its benefits both for the comfort and even the longevity of patients often are delayed.

“A very real impression among many in the community is that a transition to palliative care, and more particularly entry into the hospice care system, means no further medical treatment options will be provided, imposing a ‘death sentence,’” Powers said. (See Powers’ full testimony here.)

Palliative care needs to be clearly and carefully defined in the regulations, Powers said.

Given varying sensibilities about mortality, it is hard to the right time to broach the subject. And yet, Powers said, “A patient’s prognosis, whether it be a six-month terminal illness or a lifetime of medical interventions to address a chronic condition, should not limit the appropriateness of initiating this discussion or providing this information.”

Any pamphlets or other educational information “must be sensitive to cultural and religious perspectives; it must be in a form that assumes face-to-face conversations with a member of the patient’s health care team; and it must be provided in the context of continued and compassionate care,” Powers said.

More generally, the Community Ethics Committee is encouraged by the DPH effort.

“We believe hospitals, clinics, and long-term care facilities should have an obligation to provide information on palliative care and end-of-life treatment options,” Powers said, “and we applaud (DHP) efforts to ensure that happens.”

Saturday, November 23, 2013

What if NOT making end-of-life plans cost you money ?

Granted, after you are dead, it could be the least of your worries. But if you do make plans for your estate, and ignoring this part results in significant losses to its value, maybe that is the trigger that will make some people tackle what is obviously an uncomfortable topic.

To some it is not a topic of polite conversation, to others it is shocking, morbid, inappropriate.

The Wall Street Journal and other publications have started to address end of life planning as a beneficial activity, if only to preserve value.

From the Journal article:
The end-of-life experience "is bankrupting us personally, institutionally and governmentally, and we're not getting what we want," says Mr. Hebb, who is 37.

Tuesday, November 12, 2013

Between the Quotation Marks

The term brain death appears without quotation marks in the subtitle of “Defining the Moment” (Shoresh Press), a work of remarkable scientific and theological understanding. But that is the last time in David Shabtai’s book you will find brain death without its typographical book ends.

“The quotation marks (are) a constant reminder of the ambiguity and imprecision of the term,” Shabtai writes.

No matter what you do with the term -- underline it, italicize, bold-face it, capitalize it, or delete it -- there is no typographical or grammatical device to anoint it with clarity. Because brain death, like so much about modern decision making at the end of life, defies clarity. 

The complete title is “Defining the Moment: Understanding Brain Death in Halakha.” Shabtai is a medical doctor, a graduate of the New York University School of Medicine. He also is a rabbi, in fellowship at the Wexner Kollel Elyon of the Rabbi Isaac Elchanan Theological Seminary. He teaches medical Halakha, the intersection of medicine and Jewish law, at Yeshiva University in New York City. (I discovered Shabtai, and his book, via Twitter.)

The complicated end-of-life negotiation between medical practices and deeply help personal values is not unique to religious Jews. Neither are many questions considered in “Defining the Moment” uniquely Jewish, though this is a book meant for halakhic decisors (those rabbis specially tasked with this defining/divining). As much as it is a deeply theological work, the book is a study of what it means to be human and mortal. And though the author’s lens is specifically Jewish, the book’s blessings are universal.

I became interested in beliefs specific to Judaism while reading about the 2008 death of Samuel Golubchuk in Winnipeg, Manitoba. At the time, Harvard’s Community Ethics Committee, of which I am a member, was preparing to study disputes between families and medical professionals over care of the dying.

At the center of these disputes is the perplexing concept of medical futility, when diagnosis and prognosis collide with beliefs, values and knowing when to let go of a loved one. These disputes, a side effect of technologies that breathe, eat and bolster immune defenses for humans who no longer can on their own, usually are resolved with a blend of patience, empathy and understanding. But when they are not resolved, the dying process can be prolonged, grief magnified and harm done to patients, doctors and nurses alike.

Such a dispute developed over the care of Samuel Golubchuk, who died after an extended time on life support while a court date was still months off. Golubchuk was not considered brain dead, but doctors came to believe his life-sustaining therapies were prolonging his dying and causing suffering. His adult children sued to continue life support, saying he would want this, as an Orthodox Jew, while intensive care physicians insisted that treatment was futile, and even harmful to the patient. One attending physician resigned from the hospital, two others from Golubchuk’s care.

Such a scenario is not unique to an Orthodox Jewish patient. Similar disputes have involved Catholics, Muslims, and believers and nonbelievers of all kinds. What they share is the uncertain knowing of when therapies have crossed from prolonging living to prolonging dying. And if dead has become difficult to define, dying is no easier.

Which underscores the importance of understanding brain death, a “new criterion for death”  introduced in 1968 by the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.

Shabtai quotes the President’s Council on Bioethics: “Calling the condition of the patient who meets a set of diagnostic tests ‘brain death’ begs the question of whether this condition does or does not warrant a determination that the patient has died. What is needed is a separate, non-prejudicial name for the condition that describes the state of the patient: a name that does not, by its use, commit one to any judgement about whether the death of the human being has occurred.”

Good luck with that. The French call it coma depasse (beyond coma). The Harvard Committee, way back in 1968, opted for “irreversible coma.” Other attempts include “irreversible apneic coma” and “brain arrest,” and the choice of the President’s Council: “total brain failure.”

“The various choices,” Shabtai writes, “reflect different value judgments as to what it means to be dead.”

More recently, when the Community Ethics Committee was beginning its study of medical futility, I described to colleagues what I had learned from coverage of the Golubchuk case by sources ranging from mainstream newspapers to right-to-life websites. I described how Golubchuk’s children were passionately committed to sustaining his life mechanically, honoring their father’s deeply held Orthodox Jewish beliefs; to do otherwise would mean hastening his death. 

Hearing my description, a CEC colleague, himself a rabbi, grimaced. “No, no, no,” he said. The family had it half right. While it is true that hastening death violates Jewish law, prolonging the dying process can also be a violation. 

So where is that line? As with brain death, how to define that moment?

(While unrelated to Shabtai’s book, it seems for worth noting that a working group for the Vatican’s Pontifical Academy of Sciences wrote in 2008: “Brain death is not a synonym for death, does not imply death, or is not equal to death, but ‘is’ death.”)

Shabtai’s book contributes greatly to providing that elusive definition of “the moment,” and does so while addressing the scarcity of organs amid growing transplantation successes and needs. When does death come and make organ harvest acceptable? When the heart stops? When respiration ceases? When the brain dies? These do not occur at once, and once all have occurred, there is little time to harvest an organ before it becomes unusable.

“One of the most pressing ethical problems of our day, defining death deeply probes the meaning of what it means to be alive,” he writes. “Aside from philosophical intrigue, determining the precise moment of death has serious practical ramifications, ranging from issues of burial, bereavement, and mourning to withdrawal of therapy.”

Delayed burial is prohibited by the Torah, and a body must be buried intact. “However,” Shabtai writes, “desecrating a corpse is not one of the three cardinal sins,  and is therefore permitted for the purpose of saving a life.” Indeed, it might be considered a mitzvah.

The nineteen chapters are broken into three sections: Defining the Moment of Death, Halakhic Texts, and Modern Opinions on Brain Death.

With no background in Halakha, I found the parsing of studies and decisions to be over my head. But this collection and assessment of Talmudic grounding and the thinking of these decisors is clearly of great value, as is Shabtai’s perspective as both a medical professional and a rabbi. 

Shabtai concludes “Defining the Moment” with a short chapter titled, in part, “Epilogue.” This is hardly remarkable. Many authors use an epilogue to tie up loose ends. But to “Epilogue,” Shaptai adds, “-- In Lieu of a Conclusion.” 

Research often concludes disappointingly with “needs more study.” And, to a certain extent, that’s true of  “Defining the Moment.” But this may be this physician/rabbi’s greatest achievement. There really is no answer that will satisfy all concerned -- be they learned rabbis, physicians, both or neither. Even within Judaism, Shabtai writes, “Deciding which approach to follow and determining practical Halakha is the sacred task of the halakhic decisor.”

There’s a certain wisdom to containing “brain death” within quotation marks. And maybe there’s also a need for a punctuation mark combining question mark, period, exclamation point and elipses.

Because some questions will outlive us all.

For more on David Shabtai and his book, visit
On Twitter: @MedicalHalakhah. 

Monday, October 21, 2013

A Supreme Ruling on the Subject of Playing God

Three years ago, doctors in Ontario, Canada, argued that life-sustaining technologies and therapies were no longer in the best interests of a patient who had sustained serious brain damage during surgery.

Last December, in court, an attorney for the patient’s family disagreed: “The treatment is 100 per cent effective. It permits him to breathe.”

In the case of Hassan Rasouli, still alive in Ontario critical care, that seems to have been a winning argument with the Supreme Court of Canada, which is where the dispute wound up.

It is unsettling to write about a human being, a stranger in a strange land, and wonder whether he ought still to be alive. It's the sort of consideration I'd like to entrust to a professional. Which is, of course, the problem.

Doctors, the professionals who might best know, aren't to be trusted or empowered with this decision, according to the Supreme Court of Canada. That might be the right decision. But intensive care units already are notorious for doctor and nurse burnout; this doesn’t help.

This much is indisputable: Hassan Rasouli is alive three years after his physicians said life-sustaining treatment should cease. Rasouli, thought to be in a vegetative state following complications from surgery on his brain, could not speak to his own wishes. But his wife, a physician herself in her native Iran, disagreed with the physicians and sued to maintain his life-sustaining care.

This past week, the Supreme Court of Canada ruled in her favor. They said removing life support requires consent by the patient or substitute decision maker.

That Rasouli is alive is not to say he is expected to recover to anything near his life before the surgery, although he is considered now minimally conscious. But is he sentient?

Though this drama is playing out in Canada, it has an interested following in the United States, some of whom will attend a conference in Atlanta this week of the American Society for Bioethics and Humanities. As timing would have it, the conference is devoted to the issue of futile care in medicine, especially in those cases when the physicians and families cannot agree on what should be done. Members of Community Voices in Medical Ethics will attend to present from their report on the subject.

American media has taken little notice of the story, but in Canada, where assisted dying continues to be debated legally and politically in British Columbia and Quebec, there has been insightful reporting and commentary done on both sides of the Rasouli ruling. (See here, here, here and here). Some commenters online call this a rather minor ruling, but I don't believe that. Quite the opposite. Disputes over medical futility are relatively rare, but even more rare are the ones that make it to trial. The patients typically don't live long enough, and suits are dropped. Legislatures avoid the subject. So this ruling will be studied closely.

For me, these are points of interest:

The Patient
Hassan Rasouli, a Shia Muslim who emigrated in 2010 with his wife and two children from Iran to Canada, was left in a vegetative state three years ago from complications of surgery on a brain tumor. He has been hospitalized on life support (ventilator, feeding tubes, blood pressure drugs) ever since, but more recently was rediagnosed as minimally conscious.

What Do I Like About the Ruling?

I am happy for the wife and adult children, who fought long and hard for Rasouli. Doctors have long thought that therapeutic treatment served no beneficial purpose to Rasouli. But the family thought otherwise, and fought to keep him on life support. The court told doctors they could not remove the life support without the wife's consent. “My father’s life has changed, but he’s there," Rasouli's daughter told the National Post. "He’s human like any other human.”

Leaving this decision in the hospital’s hands could stoke “slippery slope” fears and compromise the foundational trust relationship between doctors and patients.

And the doctors in the dispute may have overreached. Ontario has a very good system for dispute resolution, the Consent and Capacity Board, and this decision may convince doctors in similar situations to make use of it.

Why Does Religion Even Matter?
In terms of his treatment as a patient, it shouldn't. But religious belief has been cited by the family as reason for keeping him on life support. And religion often is cited in cases of dispute over medical care of the dying. In Manitoba, before a dispute over the life-sustaining care of Samuel Golubchuk could be resolved in court, Golubchuk died. But before that happened, three critical care physicians from a staff of six resigned rather than continue treatments they described as torture. Golubchuk’s adult children argued that discontinuing life support would go against the strongly held beliefs of their Orthodox Jewish father. 

If Such Cases Are Rare, Then Who Cares?
An intensivist at Massachusetts General Hospital estimated that disputes over end-of-life care have become perhaps a monthly ordeal on an urban critical care ward. But if you're the doctor or nurse repeatedly changing dressing, vacuuming the throat or otherwise doing procedures for no apparent benefit to the patient, then it matters a great deal. Life support arguably becomes a vehicle for prolonging abuse.

Another reason to care is the third rail of any conversation about medical care: Cost. Recently, the Republican candidate for US Senate from New Jersey said if someone else gets cancer and lacks health insurance, "that's not my problem." He was defeated, but a lot of people voted for him. It's been estimated that maintenance of one patient in an ICU for a year costs $1 million. Canadian taxpayers will pay a high tab for Rasouli’s care.

Who Is Hurt By Keeping the Man Alive?
Anyone who is morally or ethically compromised by ordering or delivering the man's daily care, the doctors and nurses especially. If the medical team believes it is providing care in the patient's best interests, then treatment that causes some pain or prolongs suffering can be justified. Lacking a belief that you are serving the patient's best interests, it is simply bad care. And the decision makers who survive such patients often experience grief compounded by profound regret. 

What’s Disappointing in the Ruling?
Although the ruling is a rare firm decision on decision-making in end-of-life medical care, it does not address underlying problems that cause such disputes to become intractable. Physicians and nurses will continue to be forced to provide care that goes against their ethical or moral principles, which can only increase burnout in an already stressful field. Long-term life-sustaining is not what ICUs are intended for, and some fear the ruling might lead to changes in admission standards for critical care patients.