The Good-Enough Death

April 27, 2016 at 11:44 am | Posted in Aging, Catholicism, Uncategorized | 7 Comments
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The following is a review-essay on Ann Neumann’s book, The Good Death, published  by the Marginalia Review of Books last Monday, April 25. It’s much longer than a standard blog post, so I won’t post anything else for a while to give you time to read it. Also, I haven’t got a clue how to get rid of the box around the first page. Luddites of the world, unite!

Ann Neumann, The Good Death: An Exploration of Dying in America, Beacon Press, 2016, 212pp., $26.95

 

At first glance, a reader might take Ann Neumann’s The Good Death for a standard critical study — an analysis of the “complicated legal, religious and ethical labyrinths that surround dying in America,” as a blurb on the back cover suggests.

And indeed, The Good Death does a fine job, in slightly more than two hundred pages, of delineating the contours of those labyrinths. Already in the first chapter Neumann begins exploring the many reasons why death is such a fraught topic (and experience) today: we no longer see death up close, as we did when plagues, infections and childhood diseases were common. Eighty percent of us die in institutions.

Then, too, in the 1970s, for the first time in history, the very definition of death changed. What was once clearly indicated by the simultaneous ending of “heartbeat, breathing and brain function” became more and more complicated. This was especially the case because innovations — respirators, defibrillators and feeding tubes, among others — made it possible to keep the heart and lungs functioning indefinitely. Scientists attempted to define death as living without brain function, but disputes about even what constitutes total loss of brain function persist.

Neumann continues to detail the obstacles to a “good death” throughout the rest of
the book. One is the long-standing Christian belief that pain is the result of sin and
that the endurance of it makes human beings better. Even today, the U.S. Catholic
bishops, in their Ethical and Religious Directives for Catholic Health Care, state that “patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.”

In the past this principle was applied to childbirth and even dental care, but it continues to influence end-of-life practices in our time. Doctors often prescribe (and families agree to) painful treatments for patients near the end of life because they believe that extending life is what matters, no matter the cost. Linked to the sacralization of suffering is the widespread notion that to refuse to continue treatment of a family member, even if it causes them great suffering, is to betray them.

Another obstacle to the good death is the disastrous state of the U.S. health care system. In 2010 we spent over a sixth of the U.S. economy — 2.7 trillion dollars — on health care, double what was spent in 2000. And although we overspend all other developed nations by $3000 per patient per year, a 2014 study ranked the U.S. last among those nations in the quality of its health care.

Part of the reason for this dismal outcome is that half of that $2.7 trillion was spent on 5 percent of the population, those in the last year of life. And a stunning percentage of that money was invested in what biomedical ethicists call “futile treatments,” therapies, drug courses and trials that prolong but do not actually lessen illnesses. Such calculations risk sounding venal, implying that the dying simply are not worth more than a certain amount of money. But Neumann explains convincingly how much genuinely effective and often inaccessible medical care the money spent on futile end-of-life treatment would provide. She also makes clear the extent to which state laws and

the prison system collude in blocking the right to die with dignity.

Even the hospice movement, from which Neumann admits having learned a great deal as a volunteer, sometimes contributes to the difficulties of achieving a good death. The founder of the modern hospice movement, Dr. Cicely Saunders, was a staunch opponent of assisted dying, believing that pain and suffering could always be addressed. Those involved in the hospice movement today often believe that the end of life, even when it involves great suffering, presents patients with an opportunity for personal growth that aid in dying ostensibly short-circuits.

As Neumann explores the specifics of these labyrinths, she expresses fairly clearly her support for aid in dying, that is, for the right of terminally ill, mentally competent individuals, after meeting the legal requirements for such a decision, to take life-ending medication. The passage of laws allowing such aid in dying in Oregon, Washington, and Montana, interestingly enough, resulted in state residents becoming more knowledgeable about hospice and palliative care, and doctors’ increasing their referrals for hospice care significantly. Some of the most informative conversations Neumann recalls were with end-of-life activists and the staff of aid in dying organizations like Compassion & Choices.

But all of this notwithstanding, Neumann never portrays death as simple or uncomplicated.

 

I had a number of reasons for wanting to read The Good Death. Unlike Neumann, who began thinking about death only after the loss of her grandmother and father when she was in her thirties, I had been aware of it since the age of five. One day, out of the blue, my beloved grandfather suffered a heart attack and just disappeared: poof. And then in my teens, a doctor told my aunt, who in turn told me, that the dose of morphine he was giving to her husband to lessen the pain in his diabetically-infected and soon–to-be-amputated leg would probably kill him. It did.

But what really got me thinking about U.S. medical practices in the face of potentially fatal illness were two cancer surgeries I underwent in the early 1990s. With the first, I woke up in terrible pain after a hysterectomy, only to be told by the recovery room nurse that if I took painkillers too soon, I would become a drug addict. An RN friend disabused her of that notion, but not for several hours.

Then, two years later, after the removal of a malignant tumor from my colon, the surgeon sent me for a chemotherapy consult. The oncologist told me that I had a 20 percent likelihood of recurrence with the chemo and a 20 percent likelihood without it. When pushed, he said he himself would certainly not choose the chemo; it would nauseate me for a year. But when the surgeon learned of my decision, he went nuts, virtually accusing me of endangering my own life. I was thrilled when I finally escaped from his “care.”

After these experiences, nothing that Neumann writes about the national obsession with futile treatments or the need for aid in dying surprises me or seems overstated. The very possibility of death is so outrageous to some medical practitioners and some patient’s families that they cannot stop themselves from doing everything, no matter how hurtful, to avoid it.

 

One worry that I carried with me until the last few chapters of Neumann’s book concerned her treatment of Roman Catholicism. Of course, given the pivotal role the Catholic Church plays in end-of-life controversies in the United States, there is no way Neumann could avoid including the church and its teachings in her analysis. And I myself am deeply disturbed by the efforts of the U.S. Conference of Catholic Bishops (USCCB) to use “religious freedom” to deny women affordable reproductive health coverage.

But as a specialist in American Catholicism, I am also aware of the anti-Catholic discourse that snakes its way through U.S. history and culture. As I read The Good Death, I worried that Neumann might be using her considerable writing talent to extend that discourse. Indeed, soon after the book’s publication, a review in the Jesuit magazine America characterized Neumann’s treatment of Catholic teaching on death as “dismissive or condescending.”

 

Already in the third chapter Neumann addresses the role of the U.S. Conference of Catholic Bishops in the 1990 Supreme Court decision affirming the right of the family of Nancy Cruzan, who had been in a persistent vegetative state for years, to have her feeding tube removed. The USCCB’s two amicus briefs against the ruling argued that feeding tubes constitute “comfort care” and are therefore compulsory; removing them is euthanasia.

Neumann does not, interestingly enough, mention that in an earlier end-of-life case, the parents of Karen Ann Quinlan used statements by Pope Pius XII to argue for the right to have their daughter’s respirator removed. The pope had said in a 1957 address that refusing to insert an artificial respirator in a patient, even if it would result in death, did not constitute euthanasia and was therefore permitted.

That teaching notwithstanding, the bishops did oppose the right of Nancy Cruzan’s family to remove her feeding tube in 1990. But it was the Terry Schiavo case (2001-2005), according to Neumann, that really set them off. This was so, we learn, because the Schiavo decision comprised a sort of one-two punch, coming as it did after the passage of Oregon’s Death with Dignity Act in 1997. The justice system, the bishops finally realized, was directly challenging their authority.

Thus, after the court-permitted removal of Schiavo’s feeding tube and her subsequent death in 2005, a “small but significant minority” of Evangelicals and Catholics, with the unflagging support of the bishops, came together to fight the twin crimes of euthanasia and abortion. Neumann finds it hard to understand how some medical advancements, like the ventilator or contraceptives, can be any less “natural” than those the church approves, like metal feeding tubes inserted into a patient’s stomach. So do I.

In some respects, Neumann finds the broader influence of the Catholic Church on U.S. health care regarding end- of-life issues even more damning than its attempts to influence particular right-to-die cases. We learn that there are, according to the website of the USCCB, 629 Catholic hospitals in the U.S., serving, “one out of every six patients: that’s nineteen million, emergency room visits and more than one hundred million outpatient visits a year.”

And while those Catholic hospitals generally follow standard medical procedure, they are forbidden to do so when such procedures fall outside the “Ethical and Religious Directives for Health Care Services,” a list of seventy-two guidelines issued by the USCCB. Many of these guidelines involve reproductive services, but Guideline 58 addresses the use of feeding tubes for those in persistent vegetative states. Catholics are instructed that even the belief that a patient is never likely to regain consciousness is not sufficient reason to withdraw medically assisted nutrition and rehydration. This is so even if the patient’s advance directives authorize so doing.

Furthermore, Neumann explains, employees of Catholic health care institutions are forbidden to give patients information about other institutions where their advance directives would be honored; some employees have been fired for so doing. “The hard power of the church, which retains its ability to decide the types of care millions of patients receive daily — even to decide what options people can be informed of — has combined with the soft power of public opinion and coercion” to limit end-of-life choices, Neumann argues.

Despite all of this, I decided, after finishing The Good Death, that Neumann’s critique of the Catholic Church does not constitute anti-Catholicism — or if it does, I forgive her for it. I did so despite the fact that Neumann is more critical of the Catholic Church than of any other single locus of power in the end-of-life arena of the culture wars. I did not even make the decision because Neumann herself, as it turns out, is a Catholic. Since the clergy sex-abuse scandal took center-stage in 2002, liberal Catholics, as Philip Jenkins argues persuasively, are more likely than others to engage in anti-Catholic discourse.

Rather, I decided The Good Death is not anti-Catholic because Neumann’s treatment of the subject of death is extraordinarily humane and nuanced. This is the case in large part because of the stories of her relationships with individuals, some dying, others not, that are woven throughout the book. But Neumann is not using stories to introduce or connect arguments about death in our time; her encounters with these people are, in effect, her argument. She begins with her own father’s death and how horrified she was by it. Then she goes on to visit, and revisit, the lives of other men and women — many of them people she encountered as a result of her decision after her father’s death to become a hospice volunteer.

 

And in the book’s last chapter, Neumann draws on the experiences and attitudes of fully nine of the people she’s written about previously to weave together her final reflections on the good death. Neumann’s engagement with the complexity of their positions on the end of life, shaped by her considerable affection for many of them, is far removed from the vitriolic tones of anti-Catholicism, racism, and other hateful discourses.

Consider, for example, Neumann’s relationship with the paraplegic, Bill Peace, and through him, with the wider disability rights movement. Neumann first encounters Peace when, as the blogger “Bad Cripple,” he attacks Neumann’s position on assisted dying, calling it the first step on a slippery slope toward the total devaluation of the disabled. Eventually, the two meet for lunch and a powerful if sometimes-contentious friendship ensues.

It is not that Neumann is not critical of Bill and many other disability rights advocates. She finds their claims to know better than anyone else about the best way to die, even better than the dying themselves, to be arrogant. But Neumann is also forced, because of her relationship with Bill and his fellow activists, to consider whether her ignorance or avoidance of disabled persons contributes to the institutionalization of inequality.

She is even forced, to some extent, to understand the ferocity of their opposition to her position on assisted dying. Peace’s refusal to “go gentle into that good night” shapes Neumann’s nuanced reading of the end of life as much as the successful fight of a dying truck driver to get the state of Montana to allow assisted dying does, or the decision of a retired psychiatrist and close friend, Evelyn Livingstone, to go on living as long as she can.

Neumann uses these and six other stories to trace the complexity of the very idea of hope in the face of death. Sometimes lives are marked by a “deep hope” that does not delude the one who hopes but can be based on “incremental emotional needs” like going for a walk or enjoying the day. For Neumann, this characterizes the “good enough death” that her friend Dr. Evelyn Livingstone is slowly undergoing.

But hope can also be a blind faith, a hope against hope, that results in death being much, much worse for some people, or even drives others to try to make legally obligatory the practices fundamental to hope at all costs in the face of death.

Ultimately, Neumann argues that that there is no good death, just a “good enough death,” one made possible only by looking death straight in the eye and acknowledging its inevitability. Such a good enough death is strikingly different from the kind of death undergirded by denial, the profit motive, and the glorification of suffering.

As a result, Neumann is also forced to acknowledge that there are no quick solutions or easy answers to the questions she has raised. In the end, what we do is engage in the work of grief, and that itself is sometimes a form of vanity. We talk about the dead as if they are ours, clinging to “fragmentary stones,” remembrances by which they become part of us.

And we go on. After her friend Evelyn Livingstone dies, Neumann assures us, she will visit Marvin, Evelyn’s widower, who is statistically unlikely to outlive his wife by very long. And when Marvin dies, Neumann will mourn him too.

 

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7 Comments »

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  1. Excellent review, Marion, thank you! Hans Kung’s recently expressed views on this subject, as his own health deteriorates, figure into this discussion. Even though, as he says, these are personal decisions he’s making public, and not a protest as such, I find his arguments, as always – very convincing.

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  2. Thank you, Marian! At age 87, feeling well, I do think about my death. I have moved to Hempstead, NY, on Long Island, to live with my daughter and her husband. I am not in any pain. I have glaucoma and use eye drops daily. I moved from my happy home near Yellow Springs, Ohio, because I had no family members living nearby, and here I do, people with whom I have a good relationship. (I miss my “Dayton Grail” group.) And my son and his wife are more likely to get here to visit than to Yellow Springs, Ohio. My address is now 61 William Street, Hempstead, NY 11550. I gave my good Volvo station wagon to my grandson, who lives fairly nearby with his sweet wife. I’m not dependent on driving myself for self-esteem!

    But we all need to have the conversation about my last years and my death. We are faithful Christians, with some Catholics in the extended family.

    Thank you again, and oh, best wishes in every way.

    Love, Ellen

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  3. This was wonderful! I feel fortunate that I get to keep in touch with you through your public writing.

    Liora

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  4. What a wonderful blog, again, you make a nonfiction book sound interesting to a voluminous fiction reader! This topic is one that people need to deal with – I lost my baby sister at age 5, when I was 10, and my mom lost both her parents before she was 16, so we had some awareness of death growing up, but always am curious how little people are able to deal with the topic. After all, none of us gets out of here alive! take care, Margaret

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  5. Thank you Marian. This topic is very important for us Canadians at this time. Our Supreme Court has ordered the Canadian government to have an assisted death law in place by early June. (interesting how it is no longer called assisted suicide) Many people feel that the proposed law is too restrictive.

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  6. PS How do you manage to read, digest and review a book that was published less that 2 weeks ago!?! Do you get advanced copies?

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    • One of the Marginalia editors is a colleague here in NYC. She must have gotten an early copy which she sent me once I agreed to review it. Sometimes I get galleys to review, before the actual book is published, but this one was a real bound copy.

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