In their indispensable book Reclaiming the Body, Joel Shuman and Brian Volck recall a course on literature and medicine taught to 4th-year medical students. Students were asked to describe how they hoped to die with essays, and the results were as follows:
Almost without exception, their essays were the antithesis of what they’d witness in the hospital. Death takes them placidly, painlessly, and almost by surprise, without time for suffering or unwanted reflection, though beloved friends and family happen by in time to receive touching farewells. Intrusive technological fixes are nowhere to be found, and bodies never falter before the mind — perhaps more importantly — the will. Able-bodied octogenarians pass an idyllic afternoon of tennis, terrific sex, and fine wine, then sleep between soft sheets, to be discovered next morning, smiling and dead. Like pornography, it’s thoroughly utopian and cliche-ridden.
Most people, if asked, would probably articulate a similar vision for their final days or hours; when polled, about 70 percent of Americans would prefer to die at home rather than a hospital. (Fortunately, a growing number of people do die at home, though it’s still only about 40%.) A book about what happens in an intensive care unit (ICU) may not seem particularly relevant to many people, but about a third of us in America will be in an ICU within the last 30 days of life.
Even if we are fortunate enough to expire unexpectedly in our own bed after a great afternoon of tennis, we will still have to visit the ICU to be with our friends, family members, and fellow church members as they struggle between life and death with their most critical body functions managed by machines. It may be us who has to decide when to turn those machines off.
Kathryn Butler’s book Between Life and Death is written for these circumstances, designed for non-medical professionals (especially family members) who are facing a sudden tragedy like a car accident or dealing with the slow decline of dementia. A trauma surgeon and critical care doctor (and now homeschooling mother and writer), Butler draws on years of experience and countless difficult conversations with patients and their families in ICUs to equip readers for when they have these conversations themselves.
Designed to be read in advance of such conversations or hastily consulted in an emergency, Between Life and Death is a very practical book focused primarily on helping readers understand what different life-sustaining measures do to the body and their place in critical care. (“Critical care” is a synonym for “intensive care” and primarily describes the medical interventions that keep people alive when their most critical organ systems temporarily or permanently fail.) While it discusses some general principles about end-of-life care meant to guide our approach to decisions about life-sustaining treatments, the bulk of the book is dedicated to explaining in jargon-free language about what those treatments can and can’t do.
The book also contains three appendices, a selection of Scriptures of comfort for difficult times, a sample advance directive, and a summary chart of different medical treatments. This table is at once a reference for readers looking for a simple explanation of what they’re discussing with doctors and a key to understanding Butler’s central thesis.
Its five column headings are: Intervention, Organ System(s) Supported, When It Helps, When It Hurts, and Notes (primarily notes about the specific harms that accompany each intervention). The first two can be looked up on Wikipedia, but it takes years of medical training to discern when an intervention is helpful and harmful; Butler’s emphasis throughout the book is distilling her years of medical training and experience walking with families through tragedy into a comprehensible guide for understanding that help and harm.
Indeed, for those of us shaped by the Baconian project, the first step is simply acknowledging that sometimes treatments designed to help can hurt more than they can help or that they might be inappropriate. People more familiar with House or E.R. than the daily workings of an actual hospital might be led to think that aggressive medical interventions are always worth a try and are more likely than not to help patients to walk out of a hospital. This, unfortunately, is not the case: virtually everything we doctors prescribe has at best the potential for side effects and at worst unavoidable harms. Critical care in particular is full of treatments and procedures that crudely approximate the finely tuned rhythms of our bodies.
Butler begins her discussion of specific organ-supporting measures by elucidating the difference between cure and support:
[O]rgan-supporting technology inflicts suffering and does not necessarily effect cure. The capability of a medical intervention to save life depends upon a host of specific factors, with disease process being paramount among them. An indiscriminate, dogmatic approach to life-sustaining interventions threatens to inflict harm upon the very people we seek to protect. We must be so careful. As we endeavor to preserve life that God himself crafted, we must acknowledge when our efforts prolong not life but rather a painful death.
A ventilator cannot cure pneumonia. Cardiovascular medications cannot salvage dying heart muscle. Dialysis cannot kick-start the kidneys to function again. ICU measures like ventilators, vasopressor medications, and dialysis are supportive, not curative. They support failing organs until we can achieve a cure through other means—with antibiotics for pneumonia, a stent for a heart attack, or kidney transplantation for end-stage renal disease. Our ability to return a patient home depends upon our power to achieve cure; ICU measures only support organ function in the meantime. If we cannot treat the inciting illness, ICU measures will only prolong death. They may prod our hearts to beat a while longer, but they will never return us home.
Distinguishing between “supportive” and “curative” care is crucial, not only because supportive care is more likely to cause harm the longer it is used and should not be initiated in some circumstances, but also because we cannot properly use medicine unless we know what it is we are using medicine for. Furthermore, patients and families will inevitably be disappointed if they are not told whether the treatment they or their loved ones are receiving will do is designed to cure the underlying problem or is merely keeping one of their major organs functioning while working towards a cure.
In cases where cure is impossible or one of those major organ systems cannot recover, difficult decisions have to be made. Butler recounts numerous interactions with families of patients struggling with what to do—or not do—when these situations arise and stopping life-sustaining measures is discussed. As she recounts one son saying to her, “The way I see it, if we stop everything, we’re killing him. And I can’t do that.”
Butler addresses this by dichotomizing “preserving life” and “prolonging death”; while many clinical situations do not fall neatly in one box or the other, more often than not the life support technologies which sustain life through critical organ functions are not, in Butler’s words, preserving life but merely prolonging the process of dying.
Unfortunately, she does not talk much about what sort of life can be preserved so much as she emphasizes how miserable, undignified, and dishonoring the prolongation of death with its invasive procedures, pain, risk of bedsores, and unconscious or semi-conscious experience is. In this, she would have benefited from engagement with Gilbert Meilaender’s discussion of the “arc of life” and Allan Verhey’s The Christian Art of Dying, both of which dig a little deeper into some of the philosophical and theological issues that attend death. Still, simply articulating the idea that death is not a singular event to be avoided but a process to be recognized (and not prolonged) is a valuable gift to the church in and of itself.
Butler also does not mention organ transplantation in cases of brain death, a complex topic that probably did not necessarily need a complex discussion of the history of brain death but should have gotten at least a chapter subheading. Particular when it comes to otherwise healthy people who have suffered from a catastrophic trauma, the question of donating organs will inevitably arise and family members should be equipped to think through this topic. At the very least, I would liked to hear Butler ruminate on resurrection bodies containing mismatched organs.
The book spends a fair amount of time talking about advance directives—the documents that people are encouraged to prepare discussing their wishes for how they want to be treated (and what treatments they do or don’t want to receive) when they are not able to make decisions for themselves. Butler is somewhat mixed on these, understandably: she notes that a 5-page form cannot possibly convey all the nuances applicable to every imaginable medical situation, but also notes that these legal documents can be helpful in reducing death-prolonging care. Perhaps the most valuable part of an advance directive is not the finished product, but the process of conversation with doctors and loved ones that should accompany it.
However, these omissions do not diminish the book’s value as a practical guide. I would recommend that every pastor have at least one copy on their shelf that they can read with and lend to their parishioners who find themselves in ICUs praying over a loved one. It is full of wisdom from Scripture that upholds the value of life while pushing us to a soberly recognize when death is happening. Through this process, we can avoid inappropriately sustaining life (which is really just prolonging death), and celebrate Christ’s victory over death while honoring the dignity and sanctity of God-given life.