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 ?

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.”

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.

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 www.definingthemoment.com

On Twitter: @MedicalHalakhah. 

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.

A US Export: End-of-Life Guidelines

Name the American physician-author whose checklist has been adopted in the United Kingdom for end-of-life medical care.

Did you guess Atul Gawande? The Brigham & Women’s surgeon and author (“The Checklist Manifesto,” etc.) would have been my guess, especially as he’s collaborating on that subject with palliative specialist Dr. Susan Block, also of the Brigham.

But the correct answer is Monica Williams-Murphy. If that’s a surprise, it should be a pleasant surprise.

Indeed, it’s good to see that Williams-Murphy’s work is gaining recognition and influence.

Williams-Murphy co-authored the book “It’s OK to Die” (see review) and blogs at oktodie.com. That is, when she’s not practicing emergency medicine in Huntsville, Alabama.

The essays and guidelines in both the book and blog are significant contributions to the literature of medical care at the end of life. Hers is an especially important voice for two reasons.

One, she’s an emergency physician, and for better or worse, the emergency room is where the poor and uninsured go for their care. Also, ER physicians regularly have the thankless task of diagnosing and treating urgent health problems with little or no knowledge of the patient or the patient’s values.

Perhaps more important, at least politically, is that Williams-Murphy is not from Massachusetts or another so-called Blue State. She practices in Alabama, politically as Red as a state can get. 

I’ve got nothing against Boston doctors. They’re among the best anywhere, and some of them saved my daughter’s life. I consider it a privilege of living in Brookline, Massachusetts that I’m in walking distance of Children’s Hospital Boston and several world-class centers of care and healing.

But there’s no denying that Harvard Medical carries elitist baggage with some of the American public. And maybe this exposes a bias on my part, but an elitist tag is not a problem for an emergency physician in Huntsville, Alabama. Geography gives Williams-Murphy credibility. That she has something important to say helps, too.

So I considered her place of practice notable when I first read “It’s OK to Die.” And I was glad to read this week that Norfolk & Suffolk Palliative Care Academy in the United Kingdom has adapted her guidelines in creating its online resource at bereadyforit.org.uk.

“Be ready for it will help you to talk openly about dying and plan ahead so that you can make the right choices about end of life care,” the website says.

Another positive in this: The launch of bereadyforit.org.uk follows by only a couple of months the demise of the Liverpool Care Pathway for the Dying Patient. That effective, hospice-inspired framework for end-of-life care in the United Kingdom was hurriedly implemented and poorly communicated in some locations and was blamed for patient neglect that led to early deaths. It is now being phased out, and dismissed by some as “tick-box medicine.” 

The solution to disputes over care is in more dialogue, not less, among families, communities, and doctors and patients. In this, a well-considered checklist can be helpful.

In her book, Williams-Murphy agrees with the American Medical Association “that there is no good reason to either allow or cause unnecessary suffering at the end of life. Sadly, we have arrived at a place in American history where this unnecessary suffering is too frequently occurring.”

The collaboration between bereadyforit.org.uk and Dr. Williams-Murphy is a welcome sign that the checklist isn’t going away.

A Bioethical Shutdown

I visited Bioethics.gov today hoping to read new educational materials from the Presidential Commission for the Study of Bioethical Issues. The new resources are based “on real-life ethical challenges addressed by the Bioethics Commission, including its investigation into the 1940s U.S. Public Health Service STD research in Guatemala, and how to advance whole genome sequencing while protecting individuals' privacy.”

The Guatemala study is of particular interest to Community Voices in Medical Ethics, following our own study calling for stronger advocacy for research participants -- and to stop calling those participants “subjects.”

Alas, catching up on the Presidential Commission’s new materials will have to wait. My education was limited to this reminder of the government shutdown:

“Due to the lapse in government funding, Bioethics.gov is unavailable during the government shutdown. The Presidential Commission for the Study of Bioethical Issues is not able to respond to inquiries until appropriations are enacted. Updates regarding government operating status and resumption of normal operations can be found at usa.gov.  We regret any inconvenience.”

A Walk on the Transplant Side

The liver newly implanted in Lou Reed is not thrilled with its 71-year-old host, The Onion reports. The rock ‘n’ roll icon “is really hard to get along with,” the 3.5-pound organ is quoted as saying.

You know these are roiling times in the world of organ transplantation when even The Onion is devoting its satire to the subject. And though The Onion did not actually interview the newly relocated organ, the simple fact of the singer known for “Walk on the Wild Side” receiving a replacement liver is true.

Also true is a confluence of news stories that highlight both extraordinary, life-extending advances in organ transplantation and the inequity and heart-break created by those very advances, because the scarcity of organs, especially hearts and lungs, means a select few will benefit. The supply is not meeting the demand.

Just in the past week, while ethicists and pundits alike pondered the appropriateness of awarding a new liver to Reed, whose admitted excesses contributed to the failure of the original, a 31-year-old man surprised his surgeons with how robust he appeared at a press conference in Utah, only weeks after he received both a new heart and new liver in a single surgery. Read the story here. 

His was a joyous occasion, far different from the mood at Children’s Hospital of Philadelphia, where a 10-year-old girl with lungs ravaged by cystic fibrosis desperately needs a transplant but no organ is available. That is, no organ is available to those atop the children’s list, where donor organs are even more rare by comparison with those for the teen-adult list.

Physicians, surgeons and other transplant authorities have deemed issues of organ size and surgical risk sufficient to place children on a separate list. Those reasons are being questioned heatedly and understandably by the parents, and a online signature drive rallying support for the child’s transplant has generated more than 300,000 signatures.

On Wednesday, lawyers for the girl’s family won a temporary court order making her eligible to seek an organ from an adult donor. One day later, the same judge made a similar ruling for another child seeking access to the adult transplant list. 

I look forward to better understanding the reasoning behind creating separate waiting lists by age. I've read both that a modified adult lung hold great promise for a child, and that modifying the lung adds seriously to the surgical complexity of the transplant. Is the transplant success rate sufficiently diminished for a child receiving a modified adult lung to negate the potential benefit in years of life? Is a satisfactory answer to that question even possible? 

Who sets these policies? Transplant physicians, government officials, specialists in immunology, experts in organ donation, donor families, transplant recipients and members of the general public.

And yet U.S. Rep. Patrick Meehan from Pennsylvania, part of the drive to get the child new lungs, referred to “the arbitrary policy” keeping her off the teen-adult list. The policy may well be wrong, in this case, but it is not arbitrary. The policy also has been widely described as “federal,” but it was determined by transplant surgeons and families, among others. And who is better placed to make such policy? Certainly not an online signatory at change.org, or a politician or bureaucrat.

There are a number of useful online resources for understanding the thinking behind transplant policies, including here, here and here.

Interestingly, the United Network for Organ Sharing, which holds the federal contract and operates the organ-sharing system known as the Organ Procurement and Transplant Network, notes in an FAQ on lung transplant: “As transplant professionals apply this system and learn from it, some changes will likely be required to better meet the needs of transplant candidates. In fact, this system is designed to be flexible and allow for improvements.”

In Utah, transplant surgeons, working consecutively, placed new lungs and heart in a 31-year-old man who surprised them less than two months later with his impressive physical presence. Amazing -- even miraculous, if you’re given to such a word choice. He’d been on the waiting list for 718 days.

Those transplant teams, or their colleagues elsewhere, are the experts behind these newly controversial allocation policies. They're the ones who would modify an adult organ to fit a 10-year-old.

As the heart surgeon said: "We have a young man sitting here who has the gift of two organs from a family that was kind enough to give the gift of life. And he looks terrific. If you pass him on the street you won’t know he had a transplant."

According to UNOS, nearly 120,000 people are on the national transplant waiting list. About 92 get transplants daily, while 18 die. About 1,700 are on the list for new lungs. If the 10-year-old gets an adult lung, someone else won’t. Probably someone lacking an online signature drive.

As Lou Reed’s new liver “told” The Onion: “He just has this way of making you feel completely inadequate.”

Lungs, the List and the 10-year-old

I don’t know much about organ transplantation, though I’m learning during a current study with colleagues on the Community Ethics Committee of selection criteria for pediatric transplant recipients. 

Before this study began, much of what I knew was learned one morning several years ago at Seattle Children’s Hospital. I was angry and getting angrier at the unfairness of my 8-year-old daughter having to wait for surgery to implant the tubes that would deliver chemo, other drugs, blood and eventually the stem cells that would save her life. My daughter was anxious and hungry, and I was angry at the delay. 

But something more pressing had come up for the surgeon. Something more important than my daughter and her merely life-threatening illness.

Turned out, a heart had become available, and was delivered by helicopter in the middle of the night. One child’s death gave another child another chance, and got us bumped from first on the surgeon’s morning list. It wasn’t fair, but nothing is fair in organ transplant, where you only get to the top of the list if you’re about to die, and then there may not even be an organ available when you need it. And God forbid something else goes wrong with your body, because that can get you dropped from the list or never placed on it in the first place.

Another insight into fairness and transplant came via friends in Los Angeles, whose only child I had watched grow up before moving east. I visited them at the hospital when she was born, before the cystic fibrosis diagnosis. We lost contact. Then, when I heard from them again, it was to inform me that their daughter had died. She’d made it to high school graduation, but not much longer. She was on the waiting list for a lung transplant when she died. Cystic fibrosis hadn’t left her alone for a moment for 18 years. Her parents put everything they had into that child, but only new lungs could save her, and they weren’t available.

I think about them in reading about the change.org signature drive to get the system run under contract with Department of Health and Human Services by the United Network for Organ Sharing to change the policy that separates children from teens/adults. Adult lungs are less suitable for children, must be modified, and success rates decrease. 

Missing from the signature drive, in support of the anguished parents and their desperately needy 10-year-old, is the fact of just how scarce lungs are. The need is much greater than the supply. 

If this current signature drive succeeds, and this precious 10-year-old manages to get on the adult list and then to receive new lungs, someone else will not get those lungs. And that person, or someone else down the list, will die. Probably without a signature drive.

That doesn’t seem fair, but it could arguably be considered just, and the media coverage might inspire increased donations.

Much of the online dialogue about this case offers more heat than light, but one idea stood out among comments at CNN.com: “In countries where they changed organ donation from an opt-in system to an opt-out system (that is, you were assumed to be an organ donor unless you explicitly requested otherwise), organ donation increased immensely.”

See coverage of the 10-year-old’s plight here, here and here.

Hope Comes in Three Flavors

A study from The Netherlands looks at hope as experienced by palliative-care patients -- through the literature of medical professionals.

The perspectives fall into three categories: realistic (“hope as an expectation should be truthful, and healthcare professionals focused on adjusting hope to truth”), functional (“hope as coping mechanism should help patients, and professionals focused on fostering hope”), and narrative (“hope as meaning should be valuable for patients, and healthcare professionals focused on interpreting it”).

The study concludes, “Healthcare professionals who are able to work with three perspectives on hope may improve their communication with their palliative care patients, which leads to a better quality of care.”

Hastings Updates Guidelines on End-of-Life Decision-Making

Hastings Center has updated a resource to help medical professionals, patients and families with conversations and other aspects of decision-making in end-of-life care.

“The book is designed for practical use in hospitals, nursing homes, community health settings, or anywhere that professionals, patients, and loved ones need to discuss a patient’s values and preferences concerning different options for treatment and care,” says Nancy Berlinger, Hastings Center research scholar and co-author of the guidelines with Bruce Jennings, director of bioethics at the Center for Humans and Nature, and Susan M. Wolf, professor of law, medicine & public policy at the University of Minnesota.

“The guidelines offer a reliable framework for these discussions, and for education, policy-making, and redesign of care. They also encourage health care leaders and administrators to support better outcomes for patients by building more effective forms of care delivery and integrating care near the end of life into organizational safety and improvement initiatives.”

See more on the guidelines here.

And Hastings Center president Mildred Solomon’s description here. 

Imagining the Unimaginable

The terrorists who struck among crowds massed at the Boston Marathon finish line seemed intent on inflicting maximum harm, and the harm done was heartbreaking. But did the location of the explosions actually help to minimize fatalities?

The explosions occurred in close proximity to medical facilities and staff on hand for the runners, many of whom where themselves medical professionals, and response to those injured was immediate. Extraordinary medical care was just blocks away at Massachusetts General Hospital, Boston Medical Center, Tufts Medical Centerl, Beth Israel Deaconess Medical Center and Brigham and Women’s Hospital.

Two other factors were preparation and imagination. To a remarkable degree, Boston’s emergency physicians, surgeons, nurses and others were ready for the staggering demands of the tragedy. While such violence may seem unimaginable, imagining it was crucial to the response.

As reported by Bloomberg News, lessons learned since 9/11, and revisited annually in the years since, prepared Boston’s medical professionals and institutions for this tragedy. Boston isn’t alone in this; since 9/11, cities across the country have prepared as never before not only for acts of terrorism, but for other catastrophic events and pandemics.

The impetus for such preparation is easy to find. Just in the days since the Boston bombings, Canadian officials arrested two men allegedly plotting to derail a New York-Montreal train, Texans dealt with the deadly explosion at a fertilizer plant, and the Nature mapped outbreaks of the H7N9 avian flu in China.

According to the science journal, “One map supplied to Nature by the researchers shows, they note, that eastern China — the epicentre of the current H7N9 outbreaks — is one of the world's busiest hubs for airline traffic. A quarter of the global population outside of China lives within two hours of an airport with a direct flight from the outbreak regions, and 70% if a single connecting flight is included, the researchers explain.” 

As the Bloomberg story recounts, medical professionals train annually in disaster response: “The drills, now standard in most major U.S. cities, cover everything from plane crashes to natural disasters and dirty bombs, medical officials said. Each of the hospitals sends a team of 10 to 20 doctors and staff to the yearly drills ... The teams are then asked to respond to each scenario and the responses are discussed in depth by the entire group. ... This helps create the area-wide plans that kick in when an actual emergency occurs.”

Community Voices in Medical Ethics, which sponsors this blog, got a rare insight into this process of imagining disaster when we consulted with the Massachusetts Department of Public Health in imagining how to engage the public on what are known as Crisis Standards of Care. These are the standards put into practice during a catastrophe, natural or otherwise, that overwhelms available medical care, and so changes the rules of care we’ve come to expect.

In urgently caring for victims of the Marathon bombing, patients scheduled for surgery had to wait until those in more urgent need were operated on. So imagine the decision-making challenge for medical carers in the event of a tragedy of even greater proportions.

When there are not enough ventilators to go around, who gets one? When vaccines are in short supply during a pandemic, who goes to the head of the line? When there aren’t enough surgeons to meet the demand, or enough blood, who waits? Once first responders have been taken care of, who gets priority? How are fairness and ethics applied in such cases?

Some of the questions are just about impossible to answer, but to avoid them means not being ready the next time -- and unnecessarily adding the burdensome pressure of moral distress to an already beleaguered care team. And Bostonians have gotten a profound lesson in the benefits of imagination and preparedness.

According to Community Voices co-founder Carol Powers, one of the lessons of the Boston tragedy will be an emphasis on the emotional health of the care providers. She heard from a Brigham and Women's staff member about the emotional devastation for members of the care team determining which limbs could be reattached, and removing shrapnel and ball bearings from humans.

 “All the drills in the world don’t really get completely to the emotional toll,” she said. “The fact is that they shifted into gear and all procedures were laudatory and will be studied for a long time. But also studied will be the emotional fallout.”

The most compelling insight I’ve found into the emotional cost of care that day came from the blogger Nurse Bridgid.

“We have run disaster drill training extensively, city-wide, and hospital-wide, so we all know our roles,” she wrote, “but what I walked into, I could never have been prepared for.”

Hers is an astounding account of care expertly delivered amid unthinkable chaos, and when all the injured had been cared for, she left the hospital and stepped into a wild scene of federal and local police and tearful, anxious family members yearning for news.

“I was sobbing, and the FBI agent soothed me saying it was OK, this happens, and they will call me ... as I was walked out by one of the officers through the line of SWAT officers and sobbing family members of victims, all pleading me and begging me for information about their loved ones, telling me what they are wearing, and staring into the eyes of a young mother who asked if I remembered seeing her sons, and if they both still had their legs, I felt my whole body start to shut down. I couldn’t take it. I hadn’t cried, I hadn’t eaten or had anything to drink in hours, and I started shaking, as I got to the front of the Medical Center, I looked at the officer and said, I am going to vomit now, and he just put his hand on my back, turned away, I leaned over and vomited on the sidewalk. He told me I did a good thing today, and I walked to my car, called my mom to let her know I was OK, and cried my eyes out.”