Nailah Winkfield (R), mother of Jahi McMath, and Martin Winkfield arrive at the U.S. District Courthouse for a settlement conference in Oakland, California, January 3, 2014. REUTERS/Beck Diefenbach

Nailah Winkfield (R), mother of Jahi McMath, and Martin Winkfield arrive at the U.S. District Courthouse for a settlement conference in Oakland, California, January 3, 2014. (REUTERS/Beck Diefenbach)

By Ann Neumann 

For we are saved by hope: but hope that is seen is not hope: for what a man seeth, why doth he yet hope for? Romans 8:24 KJV

It is the thing with feathers. It is the only thing left in Pandora’s box, still captive after mingling with all the evils of the world and despite curiosity’s near-liberation. It is a mineral the color of spring leaves. It is unseen, yet it springs eternal. Along with faith, it is second only to charity. It is the silver lining of the dark, encroaching apocalypse. It is what radicalized the Blues. Patience and experience are its handmaids; chance and miracle, its bedfellows.*

It, of course, is hope, attendant to every utterance of bad news, particularly the medical kind. It is hope, however irrational, that produces the “placebo effect,” the stabilization of an ill patient when given pills that “don’t contain any active ingredients.”

But what is hope? Can we assign a value to it? How does it work, particularly in regard to medical situations? Philosopher Adrienne M. Martin writes in her new book, How We Hope: A Moral Psychology, that hope, according to St. Paul, is considered “among the three Christian theological virtues: hope, faith, and charity.” She goes on to say that “acceptance of the claim that hope is a virtue extends far beyond the reach of Christian doctrine. This is no doubt, due to the widely held belief that hope has a special sustaining power.”

But is hope always a virtue? I’d offer that the answer depends on what is being hoped for. Is hope for something impossible a virtue?  For this answer, I think we would ethically have to account for the realm of impossible and the costs of that hope. There are particular medical situations that demonstrate the lack of virtue (or questionable ethics) of hoping for a medical impossibility.

Is hope always a virtue? I’d offer that the answer depends on what is being hoped for.

It is hope, unnamed, that Dr. Sandeep Jauhar defends in his recent New York Times article, “When Doctors Need to Lie.”** A father begs Jauhar not to tell his distraught son that the young man has heart failure. “‘It would mean a lot to me if you could go back in and tell him he’s going to be all right,’ the father pleaded.” Jauhar does because, “Above all, physicians must do no harm,” and he sees truth-telling as immediately harmful to the son. It’s an act reminiscent of old-school medical paternalism, Jauhar tell us, quoting the American Medical Association’s code of ethics which once stated, “that physicians had a ‘sacred duty’ to ‘avoid all things which have a tendency to discourage the patient and depress his spirits.’” His hope. Over the next few days, Jauhar gently eased the young man into the truth of his diagnosis.

In his second example of when a doctor needs to lie, Jauhar intubates a man who is no longer conscious, despite the patient’s previously stated request that he not be intubated. Jauhar writes:

He had a rocky course. The bleeding in his lungs continued for several days, requiring large blood transfusions, but it eventually stopped. He had protracted fevers. After a few days, his condition improved. A week after that, the breathing tube was removed.

The procedure saves the man’s life and he later thanks Jauhar. But it’s an alarming account, one that lacks the necessary details. How ill was the man, how old, how much did he and his family suffer, how much longer did he ultimately live? (Don’t miss the hundreds of condemning comments at The New York Times’ site. All I can say is, I’m glad Jauhar won’t find himself the keeper of my spirits.)

Jauhar goes against the predominant ethics regarding patients’ informed consent and autonomy — the right of patients to be told about the benefits and risks of all medical procedures and to make their own medical decisions accordingly. But he’s probably in line with predominant practice; patient autonomy is hard to recognize and enforce in a host of ways. How much does a patient understand about medical practice? Do they believe what a doctor tells them? These are just some of the valid questions we ought to ask in the face of medical crisis. These complications are outlined in the seminal 2009 book Principles of Biomedical Ethics, by Tom L. Beauchamp and James F. Childress which outlines the ethics of autonomy and informed consent:

The weighing of risks in the context of a person’s subjective beliefs, fears, and hopes is not an expert skill, and information provided to patients and subjects sometimes needs to be freed from the entrenched values and goals of medical professionals…. Professional standards in medicine are fashioned for medical judgments, but decisions for or against medical care, which are nonmedical decisions, are rightly the province of the patient.

What Jauhar fails to address is the rampant overtreatment currently prevalent in medicine. From ineffective mammograms to painful hip replacements, from pacemakers to respirators, Americans are often less benefitted by painful treatments, particularly later in life, than they or their doctors had hoped before treatment. But, were those same patients clearly informed about what the procedure entailed and what its likely outcome would be, they might not have agreed to it. Writes Katy Butler in a heartbreaking article*** about her father’s long, slow death: “According to an analysis by the Dartmouth Atlas medical-research group, patients are far more likely than their doctors to reject aggressive treatments when fully informed of pros, cons and alternatives — information, one study suggests, that nearly half of patients say they don’t get.”

There is clearly a financial cost to such extended treatment when recovery or cure are not possible. A cost that, many bioethicists argue, could be better spent on those whose lives can be saved. For good reason large segments of the population fear that their lives are considered less valuable than others, so claims on behalf of the “most vulnerable” make ethical sense. But whom do we consider the most vulnerable?

There’s another cost that I think must also be weighed here, and that is the emotional and physical suffering of the patient and their family. If Jauhar’s intubated patient died a month after the procedure, can we say Jauhar made the best decision? Despite the wishes of his patient?

**

There is something quite important to be learned from Jauhar’s defense of lying** to patients: patient autonomy isn’t always enough. Or, rather, it is too much. From the experience of my own father’s death and from subsequent years as a hospice volunteer, I’ve seen patients look for definitive answers from others when faced with medical crisis. They want an authority to tell them what to do, whether it is a knowledgeable family member or a trusted doctor. Independent decision-making, in other words, can isolate a sick patient, robbing them of the support of a community.

Doctors don’t want to deliver a terminal diagnosis any more than patients want to receive one. When a desperate patient presses for answers, it’s often easier for a doctor to “couch his words in hope,” writes Virginia Morris in Talking About Death. It’s hard to know what is more damaging to a patient, the truth or the hope of one more experimental treatment… even if it has less than 5% efficacy. Hope can give the patient options, a reason to fight through pain and suffering. Hope can give a family a stay from grief, but it can also cause a patient to accept further treatments for the sake of their loved ones. Hope can give a doctor an out, a way to avoid being death’s messenger. For this reason and more, accepting hope as an unquestionable virtue can sometimes cause patients, who have no curative options, only more pain and suffering.

**

Is there such a thing as false hope? This is the primary question I’ve had on my mind since December when the heartbreaking case of thirteen year old Jahi McMath blanketed national media. McMath had entered Children’s Hospital Oakland, in California, for an operation to end sleep apnea. The operation proved fatal when, three days later, McMath hemorrhaged enough blood to stop her breathing. Doctors determined that she was brain dead and were preparing to remove her respirator when McMath’s parents’ refused to let them do so.

Is there such a thing as false hope?

Brain death has long been the accepted medical definition of death. It means that oxygen is no longer reaching the patient’s brain; not even the brain stem (as with persistent vegetative state patients) is functional. Yet, as another Beauchamp book, Ethical Issues in Death and Dying, co-edited with Robert M. Veatch in 1996, notes, some, like McMath’s parents…

recognize this choice as a moral, religious, or philosophical one, not one that can be made solely on the basis of scientific evidence. It appears that a small, but significant minority will continue to hold that an individual with a beating heart is still alive even if that heart is maintained mechanically and there is no brain function.

Clearly, from commentary surrounding the case, McMath’s parents are among a small minority of Americans who do not count brain death as final death. The significance of this minority is evident in the aftermath of the case. Nailah Winkfield, Jahi’s mother, was granted permission to move her daughter to another facility after Children’s Hospital Oakland issued a death certificate for Jahi.

A few days before the move, the Terri Schindler Schiavo Life & Hope Network, disclosed that they had been working in secret with Winkfield to find an appropriate facility and to raise funds. The Network was founded by the parents and siblings of Terri Schiavo, a persistent vegetative state patient who died in 2005 after an extended and highly publicized court battle determined that her feeding tube should be removed, according to her husband’s request. The Schindler’s are radical in their belief that the courts ordered the death of Terri Schiavo, that she was severely disabled. In taking up the cause of Jahi McMath, they signaled their commitment to an outdated definition of death that considers only the heart, even if that heart is mechanically operated. The family is currently raising funds for a facility to house patients like Schiavo and McMath, presumably without the threat of death certificates. For years they have been compiling a list of doctors and facilities sympathetic to their cause.

But it’s the Life & Hope Network’s use of hope that should draw our attention. Unless a persistent vegetative state diagnosis is incorrect there is no hope of recovery for a patient. Some brain activity may be present, most often those functions controlled in part by the brain stem, such as sleep-wake cycles and yawning. In the case of Jahi, brain death was confirmed by more than one doctor. McMath had no brain activity whatsoever.

The brain can’t regenerate itself, it can’t heal. Yet on February 19th, Nailah Winkfield posted her first update on her Facebook page, “Keep Jahi McMath on Life Support” (which has 23,600 likes) since Jahi’s removal from Children’s Hospital. Winkfield’s letter read:

I have been surrounded by the love, support and prayers of so many kind people. Despite what people say about my daughter being dead and how I must be ignorant not to get that, I can tell you that she is much better physically since she has left Children’s Hospital and I see changes that give me hope.

Winkfield goes on to use hope three more times in the letter: “I love Jahi and where there is love, there is hope” (a quote that echoes, “Where there’s life, there’s hope,” a quote attributed to Terri Schiavo by the Schindlers and used as a tagline on the Life & Hope Network website); “some [people who have contacted me] have given me hope”; and most chillingly, “Hopefully my daughter can change some of the ways brain death is viewed in today’s society. I think she already has.”

Just as the definition of death is questioned by Jahi’s mother and the Schindlers, so too is the definition of life. Despite a death certificate, is Jahi alive? Was Terri Schiavo alive before her feeding tube was removed? In an article for the Washington Times, Bobby Schindler, Terri Schiavo’s brother and director of the Life & Hope Network, wrote, “We respond because that is our mission — to provide aid, comfort and support for vulnerable persons, and to speak truth to power. No one faces more risk in today’s health care system than our medically vulnerable.”

Does hope for a miracle justify the resources that are now being used for Jahi’s “life support” and care? The rhetoric of those who hope for miracles make this vital conversation very difficult to have (what is truth? power? who is vulnerable?). As the McMath case shows, considering all hope a virtue that must be protected or accommodated has significant ramifications–for patients who have simulacrum lives projected onto them; for families who are kept from grieving by the machine-assisted prolongation of their loved one’s vital functions; for doctors who must balance the emotional and medical needs of patients; and for society, confused by terminology it doesn’t understand but that it must collectively pay for. Hoping for something impossible may be a virtue but, in the realm of medicine, perhaps it is not humane.

 ***

*Emily Dickinson. Pandora’s jar. Beryl. Romans 8:24. Springs eternal, I Corinthians 13:13. After the Apocalypse. Cornell West. Romans 5:4, Meghan Hope Pacyna.

**In defense of Jauhar’s defense, he likely had no say in what his op-ed was titled.

***Butler has expanded her article, “What Broke My Father’s Heart,” into a book about futile care, Knocking on Heaven’s Door, published in September, 2013.

 ***

“The Patient Body” is a monthly column about the intersection of religion and medicine. Prior columns can be read here:

Your Ethical and Religious Directives

Hospitals and the Pretense of Charity

A Closely Held Business

What’s a Kidney Worth

An Irresistible Force

***

Ann Neumann is a Visiting Scholar at the Center for Religion and Media at New York University and contributing editor at The Revealer and Guernica magazine. Neumann is currently writing a book about a good death.