The authors of The Good Death and Five Days at Memorial discuss disaster preparedness, impossible health care choices, and the notion of journalistic objectivity.
In his Bookforum review of Sheri Fink’s 2013 bestseller Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital, Jeff Sharlet wrote that the book, “like all great journalism,” was “a document unto itself, an artifact of what we thought about ‘life and death’ issues in the early twenty-first century.” Developed out of a Pulitzer Prize winning article Fink wrote for The New York Times Magazine, Five Days at Memorial recounts, in minute detail, the events at Memorial Medical Center in the aftermath of Hurricane Katrina in the last days of August and the first days of September 2005, and the investigation into deaths there that followed.
When Hurricane Katrina made landfall in New Orleans at daybreak on August 29, it brought 145 mile-an-hour winds and a 29-foot storm surge. But the most harrowing effects of the storm began as the skies cleared. When Memorial Medical staffers reached the hospital’s owner, Tenet Healthcare Corporation, by phone, they learned that there was no rescue plan in place. A helicopter rescue was arranged by cell phone, and staff began to move patients to the roof of a parking garage. But they chose to first evacuate those most likely to survive, leaving the critical patients in the hospital.
What happened to those patients, forty-five of whom died, was the subject of an ongoing debate in both the courts and among national disaster experts—and continues to challenge medical ethicists and hospital administrators today, more than ten years later. One doctor and two nurses were eventually arrested and accused of second degree murder in the deaths of some of the patients.
It is Fink’s patient development of the events at Memorial that makes the book so compelling. With more than 500 interviews and three years of intense research, she details the lives of those involved and the ensuing investigation in a way that defies quick judgements. Fink refrains from drawing conclusions that neatly apply a value of “right” or “wrong” to the actions of Memorial’s staff, who were ultimately found not guilty, but rather she carries us through the medical and cultural history that surround their actions. And it is this tension, the nuance of disaster and decision, that draws the reader through the book. Now a reporter for The New York Times, Fink won a Pulitzer for her reporting on Africa’s Ebola crisis. Five Days at Memorial was released in paperback this month.
The ethical, legal, and moral ramifications of end of life care are also the subject of Ann Neumann’s new book, The Good Death: An Exploration of Dying in America, to be published by Beacon Press on February 16. A visiting scholar at The Center for Religion and Media at New York University (and a nonfiction contributing editor for Guernica), Neumann began her research after the death of her father in Pennsylvania in 2005, a few short months after the family gathered around his deathbed to watch televised reports of Katrina. In the course of her reporting, Neumann became a hospice volunteer, and interviewed nurses, doctors, bioethicists, and patients. By recounting these individuals’ stories—a hunger-striking prisoner, an anti-aid-in-dying activist, prison hospice nurses—Neumann examines the way we care for terminal patients and the conflicts that accompany so many end of life decisions.
In structure, Fink and Neumann’s books are quite different, but both engage the social and cultural history of the ethics of medical care for the dying. The following is a conversation the two authors conducted via email in early February. They discuss the benefits of journalistic objectivity, the power of story, and the systemic and cultural challenges that prevent both care facilities and families from truly being prepared for difficult decisions.
Ann Neumann: In his review of Five Days at Memorial for The New York Times, Jason Berry wrote, “That so many people, starkly divided over the question of whether crimes had been committed, come off as decent and appealing makes this book an absorbing read.” We’re not explicitly aware of your thoughts and opinions in the book. Was this something you set out to do when you began writing, to not take sides or make judgements? To adhere to a strict form of objectivity? And, while Berry thinks you succeeded, do you?
Sheri Fink: It was intentional, yes, because so many people involved in these events had starkly different points of view. The first half of the book takes the reader almost moment by moment through the crisis, and I wanted him or her to encounter decisions the staff at Memorial had to make in context, with the limited information they had at the time. Only later do we look back on these choices with the investigators in the second half.
Also, and this may sound naïve, but since my early days in journalism, I’ve felt that getting as close as possible to truth, revealing the reality of a situation in detail, has its own persuasive power. This allows readers to look at the facts and the perspectives presented and draw informed conclusions. Of course, no matter how hard we try to be objective as reporters, our life experiences and personal circumstances influence our journalism, including the choice of topics we pursue. That being said, even if we cannot achieve it, journalism that strives toward objectivity and fairness has an important place in our society. So, too, does being honest and open when presenting our own opinions, as you do so well in your book.
So I’d like to ask you a similar question. The Good Death is in many ways journalistic. Beginning with its birth in your quest to contextualize the death of your father, you did extensive research, and not only with interviews and books. You earned yourself authenticity in the tradition of immersion journalism by becoming a hospice volunteer and getting very close to other deaths. Each chapter looks at the issue from a different and fascinating perspective. The details with which you describe people and places are gorgeous and evocative. You enlighten us with nimble quotations culled from books and essays written throughout the ages. Still, The Good Death, unquestionably, supports aid in dying. The two chapters that focus on opponents mainly serve to take apart their arguments. Would you call your book objective? Does that matter?
Ann Neumann: I agree that journalists can never really be objective, but that in many cases trying to write as close to the facts is valid and important. And your book is a beautiful example of what can be learned and experienced from a clear-eyed retelling of events. I went into hospice volunteering not knowing that a book would come out of the experience, so I thought that my investigation (or search or research?) was for personal reasons. My writing from that period is almost like a journal. Recording what I saw and what I thought of it. Once I started writing about hospice and end of life care for publications, I realized that there was no way for me to contrive two sides to the aid in dying conversation when my experience, with patients and others, showed me that there were many sides. And most of them were completely valid. You chose to, in the face of so many viewpoints, to be as objective as possible, something that, along with the book’s structure, suits the material very well. I took another course, and probably the easier one, to tell it from where I stood. I wasn’t setting out to be definitive—or even thorough. I was most interested in telling stories: those of my patients and others I encountered, but also my own. I wanted them to tell me how they made the decisions they did in dire situations, perhaps so I could understand my own.
In Five Days at Memorial, you too track a decision-making process, one developed in the days of disaster and not set out beforehand—because Memorial had no appropriate plan in place. When comparing disaster triage and organ donation, you write, “Although no allocation method could ever enlist universal agreement, the process of devising a method, at least, can be made more just.” The great tragedy of Memorial is, of course, the number of lives lost. But the lack of an explicit triage plan to guide the staff seems to throw heightened doubt onto the decisions they made. Do you think that even the absence of a plan can create the impression of injustice and unethical behavior?
The question of who gets scarce medical resources during a disaster has a lot to do with values, not just medicine.
Sheri Fink: Yes, that’s right. If the staff and leadership at this hospital could have pointed to a plan and a process by which they made the decisions they did—whom to rescue first, and how to care for those patients who appeared to have little chance of surviving—it stands to reason that there would have been fewer questions and more trust after the disaster. And those plans and processes could have helped keep decisions in line with ethical principles and the best possible standards of care. It would also have lifted some of the decision-making burden off the shoulders of exhausted, scared, unprepared individuals. There’s also the issue of inclusiveness—for example, now some states and localities are bringing representatives with diverse perspectives into the disaster planning process for hospitals, because the question of who gets scarce medical resources during a disaster has a lot to do with values, not just medicine. On the other hand, some of the plans that have been drawn up for rationing scarce medical resources in a disaster have their own hazards. They can discourage flexibility, which is one of the key principles of disaster response. You need to be frequently re-assessing and re-matching resources and needs throughout a period of crisis. If you blindly follow a piece of paper that says take away the ventilators from everyone over age 65 in a mass emergency, say, and it turns out you actually can get enough ventilators and staff to care for everyone, it would be a tragedy not to change the plan. Also, let’s say that a reasonable goal in allocating resources in a disaster is to save the greatest number of lives, or greatest number of years of life. There are not really good data or studies showing how to direct resources to accomplish that.
Speaking of triage, I was struck by arguments in The Good Death about economics. You write: “In our collective effort to avoid death at all costs, we are all complicit in a painful and costly phenomenon that has developed over the past five decades: a funneling of medical resources away from those who need them.” You give the example of a man whose last ten days of medical care cost $323,658, and you tell us how many babies could have been born at that price, how many uninsured patients given health insurance. Still, I wonder about this kind of zero-sum calculus when there are so many other ways our dollars are wasted. Is the care of the dying man truly robbing care from the poor man? How reliably can we know when someone is in the last ten days of life? You write “…new [medical] technologies could prop up individual failing systems, but they couldn’t stop death; they could only prolong pain and suffering.” Don’t these technologies help many people with serious medical problems recover?
But we have gone so far in the direction of over treating terminal patients that we’ve failed to recognize when we’re doing more harm than good.
Ann Neumann: Absolutely. New technologies, drugs and therapies—and even those technologies now decades old, like defibrillators and respirators—are miraculous in their ability to save lives. Hands down, they’re an enormous benefit to human life and health. But we have gone so far in the direction of over-treating terminal patients that we’ve failed to recognize when we’re doing more harm than good. And not just to the patient. Medical resources are finite. They’re in a budget, either the governments’, my insurance company’s, or mine. So what we’re getting by putting people through painful last weeks is a focus on the wrong thing—longevity—and not on what matters—good care.
But it’s also the focus on longevity (for some!) that draws our attention from the other ways we neglect segments of the population. If we agree that good health is the right of the person with the best insurance or the deepest pockets, we’re passing a false and damning judgement on those without the same resources. We’re rendering their care needs invisible. And we’re failing to shape a system with a more egalitarian objective.
As I reread Five Days at Memorial, in preparation for this conversation and our event on February 17, I was again struck by how damning your indictment is of resource allocation. You quote, early on, that a homeowners’ association demanded that the levees be improved so that the “‘hand of God’ will not be blamed as often for what the hand of man has neglected to do.” Race, socioeconomic class, and economic factors all play a profound role in the crisis at Memorial: lessons from repeated floods—including one that crippled the hospital only two months after its opening in 1926—go unheeded; the hospital’s history of segregation echoes in the panic-inducing tales of looting that accompanied the flood; the hospital failed to keep adequate supplies of drugs readily available. Katrina, in other words, was a disaster waiting to happen.
Unless we know and remember the stakes of failing to prepare, we will not be motivated to prepare.
Sheri Fink: It was indeed. Soon after a disaster passes, we tend to turn our eyes away and focus our resources on the day-to-day, rather than on preparing for the rare, but foreseeable and potentially catastrophic disaster. It’s another form of triage, how much we invest in preparing for that, a very important question for public policy. We are a short-sighted species. And part of the reason for writing Five Days at Memorial is that unless we know and remember the stakes of failing to prepare, we will not be motivated to prepare.
On the theme of past as prologue, I loved the ways you wove history into the narrative of The Good Death, showing both modern and timeless aspects of how humans grapple with death. You quote physicians as old and revered as Hippocrates and Asclepius embracing and accepting the concept of limiting medical treatment in the case of futility. Could you tell me a bit about that and how we should view their views today? Could you also address Hippocrates’ opposition to the involvement of doctors in bringing about death?
Ann Neumann: The benefit of looking at the early teachings of the Western world’s doctors is, for me, not in identifying unchanging principles—the golden rules to practice medicine by, alas—but in charting the evolution of medical ethics. The concept of futile care is age-old! But too, our understanding of what is futile and our technological ability to redefine it are ever changing. Literal interpretation of most anything, including the writings of Hippocrates, who never envisioned the development of, say, plastics, always makes me nervous. And yet I do believe that some principles are eternal, like the absolute respect for human life. We fail all the time, but it’s the most worthy goal.
If we plunked Hippocrates down in a hospital today, how would he define respect for human life, or “bringing about death”? Would he know how to grapple with the new definitions of death and the new definitions of “bringing about”? It’s an informative exercise, to apply the thought processes of Hippocrates to our current medical environment, but his teachings aren’t sacrosanct. And they’re only applicable if we spell out all the caveats of the comparison. But there, then, is the old philosophical conundrum: are moral and ethical principles forever and unchanging? Or do they constantly evolve? And how are those principles enforced and regulated?
I was pretty surprised to learn in your book that the Joint Commission on Accreditation of Healthcare Organizations is funded by the same hospitals which seek accreditation. Has this been changed since Katrina? And if so, what effect does this lack of objective oversight continue to have on hospital disaster preparation? Has Memorial since been remodeled to withstand another Katrina-like flood?
Sheri Fink: Memorial has undertaken significant retrofitting to be more resilient, including hardening the electrical system and even digging a well to create a water source to run the chillers with generator power in a city outage. I’ve spent two subsequent hurricanes in New Orleans (Gustav and Isaac), and while each one has revealed different vulnerabilities, my sense is that the city operates at a higher level of preparedness than most others in the nation. As far as I know, the organization that has since changed its name to the Joint Commission still operates in a similar manner. What’s more surprising in terms of preparedness of American healthcare facilities is that there is, as yet, little in the way of federal standards. Consensus after Katrina was that at least minimum preparedness standards should be required. But it wasn’t until 2013 that the Department of Health and Human Services issued a proposed rule that would, if it is finalized, require that any hospital, nursing home, or a variety of other healthcare institutions meet minimum standards in order to participate in and be reimbursed by Medicare. There was the expected backlash from associations arguing that this was a costly, unfunded mandate, but the rule is expected to be finalized soon.
When it comes to examining potential conflicts of interest, your book’s most impassioned critique is reserved for the Catholic Church and its role in health care. You write of your fear of ending up in a Catholic hospital and being prevented from dying in the way you wish because your choices might conflict with Catholic principles regarding the sanctity of life. How realistic is this fear? And given the large role that faith-based institutions play in meeting the healthcare needs of Americans and people around the world, what do you think is the solution to this quandary?
I’m not saying the discipline of medicine is all science—it’s rife with ideology and human emotion and it is constantly changing under new social understandings of health and being.
Ann Neumann: Patients are kept on physiological support for extended periods all the time—without any hope of recovery or ever experiencing consciousness again. It’s not rare. Extended cases like Terri Schiavo, who was diagnosed as in a persistent vegetative state, are rare but all too tragic. What the Church has done is redefine natural death to include physiological support, despite general medical practice. And they’ve opened the door to other interpretations of medically diagnosed death. We’ve even seen rare cases where the definition of death is upended by machines; Jahi McMath, a young girl who was declared brain dead in an Oakland, California, hospital is being kept on machines in an apartment in New Jersey. I’m not saying the discipline of medicine is all science—it’s rife with ideology and human emotion, and it is constantly changing under new social understandings of health and being. But lack of patient autonomy in decision-making (which usually can’t be determined in cases where the patient is not conscious or not of age), unprepared families, and limited knowledge of how machines play a role in healing, make “solutions” for these situations nearly impossible. Every case is unique. So there’s no way to legislate clearly and unanimously for the entire population.
Faith-based institutions are an enormous part of our health care delivery system, and rightly so. But if the institution’s mission is to enforce a particular action or behavior—again, here the issue of access to reproductive services is apt—we have a clear and dangerous problem. No Catholic believer abides by all the Church’s doctrines, nor does every Catholic patient. Catholic hospitals serve a pluralistic society and are funded just like any other non-profit hospital (with less than three percent of their budget from donations). So they’re legally restricting informed consent for the sake of rules passed down from Church leaders. Many argue that patients can avoid Catholic hospitals, but that’s very much easier said than done.
In my book, I discuss St. Thomas Aquinas’s development of the concept of double effect: the common use of drugs, particularly morphine, to ease a patient’s suffering, so long as the doctor’s intention is to relieve pain and not cause death. In a section on Ewing Cook, a Memorial doctor, you address this. “The intent was to provide comfort, but the result was to hasten death, and Cook knew it. The difference between something ethical and something illegal was, as Cook would put it, ‘so fine as to be imperceivable.’” The practice is not controversial on its own, but when expanded to justify actions in disaster situations, like those faced by Dr. Pou, the surgeon accused of euthanizing patients, or in the legalization of aid in dying, it is quite controversial. How can laws determine the difference between ethical or illegal if doctors can’t?
Sheri Fink: What’s interesting is that the ethicists I interviewed—people who spend their professional lives thinking about this stuff—as well as some palliative care specialists who focus on managing patients’ symptoms, argued that Dr. Cook was wrong, and that there is a clear line between giving medicine for comfort and giving medicine to kill. The ethical line and the legal line have to do with intent. And they argue that it would be dangerous to sanction doctors to cross that line. Some of the people most involved in palliative care are the most protective of the concept that these things can and must be separated.
On a similar topic, your book introduces readers to some in the disability community who have opposed the arguments you and others make in favor of aid in dying. For instance, they fear being pressured to choose death will become normative for people who lose their able-bodied status. I’ve also read about research showing that people who lose certain abilities, such as walking, often rank their quality of life much higher than people who’ve not yet lost those abilities think they would. I must admit that I find these arguments quite persuasive, particularly given the horrific history of “euthanasia” of the disabled in the 20th century. Even at Memorial, events that started with Dr. Cook’s reasonable-sounding decision to give a dying woman with little chance of rescue “enough [morphine] until she goes” ended with the injections of around two dozen individuals, including one whose death was apparently hastened because he was obese and paraplegic and nobody could imagine how to carry him to the helipad. Do you see any danger in loosening medicine’s traditional opposition to participating in bringing about death?
Ann Neumann: I think I’ve heard about the studies you mention, showing that it’s very possible to be much happier with a disability (say, the inability to walk) than expected. And our medical history is full of hideous examples of treatment of those with disabilities—perhaps because the able-bodied have failed to understand that those living with a disability can have happy and satisfying lives. Our current health care system is also rife with terrible examples of neglect and discrimination. When coupled with social misunderstanding and lack of accommodation, we have so far to go. That said, there’s no proof that the Death with Dignity laws are dangerous to the disability community—and we’ve been closely watching the statistics coming out of Oregon for nearly 20 years.
We also have very reliable and proven ways to regulate all sorts of deadly substances and items—and these work perfectly well. Not to say that disabled opponents of aid in dying don’t have an argument—they do. They live in a society that, more than 25 years after the Americans with Disabilities Act, still discriminates against them. But I think there’s a vast difference between legal aid in dying and what took place at Memorial. The former is really a doctor writing a lethal prescription for a terminal patient that the patient may or may not choose to take. The doctor doesn’t fill the prescription or administer it. The latter was a unique and tragic event that placed medical professionals and patients in an impossible situation. So what happened at Memorial has little to do, in action, with legal aid in dying.
Certainly, we could argue that the two, legal aid in dying and Memorial’s euthanizations, share intention—and many have argued this. But I think in the case of aid in dying, that’s misplacing the burden of responsibility. I also find “medicine’s traditional opposition to participating in bringing about death” to be slightly misleading. It’s an ideal. And one that, as history has shown, is violated commonly.
The value of people’s lives toward the end of life was apparent in how much you gained from interacting with your patients.
Sheri Fink: Ann, a bonus question, if I may—I loved your descriptions of caregiving as a hospice volunteer. The value of people’s lives toward the end of life was apparent in how much you gained from interacting with your patients. In return, you provided them with great comfort and friendship. And yet, as you point out, caregiving is so little valued in our society. Why do you think that is?
Ann Neumann: Caregiving has been incredibly rewarding for me, but that’s not to say I don’t acknowledge its difficulties. My father’s last months were a hardship I could never have imagined. So while it’s fulfilling work, it’s also hard work. Caregiving has changed drastically over the past decades. With longer deaths have come longer periods of caring for elders with increasing frailty and disability. It’s humbling to be around those who do this for a living.
Women traditionally did this work in their homes, alongside other domestic labor like cleaning or raising children, so it’s never been valued in the same way as work outside the home. Female nurses still outnumber males by about nine to one. And as we know, professions with a predominantly female workforce tend to pay less. I’m hopeful when I see the work of someone like Ai-Jen Poo, organizing domestic workers for better conditions and salaries, that caregivers will be more fully supported. But until we have a national plan for how to properly pay for such care—at the moment, families are wiped out by, among other expenses, what it costs to pay caregivers even paltry wages—I don’t know how it will change. I often wonder if hospice volunteering drives down the value that paid caregivers add to the hospice system; the impression is that, if you can get people to volunteer for something, why would you pay? But, of course, the role of volunteers is very different than that of nurses and aids. As more people care for aging parents, I think the work of home health aids and others will be better remunerated—and, hopefully, appreciated.
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