Saturday, February 21, 2009

On the Ways We Deal with Cancer

Mark U. Edwards, Jr. is a brave man. He was diagnosed in 1996 with myeloma (mutation of the plasma cells most often found in bone marrow), an incurable form of cancer, and given three years to live. He is still going strong. A former president of St. Olaf College, he is currently senior adviser to the Dean at Harvard Divinity School. He is author of Religion on Our Campuses: A Professor's Guide to Communities, Conflicts, and Promising Conversations (Palgrave Macmillan, 2006). Over the last year, while continuing to undergo various treatments for his myeloma, he has worked on a project called "Having a Stake, Making a Contribution: Religious Perspectives in American Higher Education," under a grant from the Lilly Foundation.

As part of that project, Mark Edwards has written a profound and insightful essay titled "Ways of 'Knowing' Cancer: How can we reason about illness?", which appears in the current issue of the Harvard Divinity Bulletin. The essay deserves wider attention, because it asks many ultimate questions that are worth pondering. He introduces his topic in this fashion:
Knowing that one has an incurable fatal malignancy with a three-year median survival rate focuses the attention. Why me? How long do I have? What do I think about death and dying, not in the abstract, but as a perhaps rapidly approaching personal likelihood? How does it change how I understand what I have done up to now? How might it direct what I attempt to do in whatever time I have remaining?

I mention these personal questions because they point to the existential nature of cancer. When I turn to cancer "from the inside out," I am able to shift to speaking of my illness rather than my disease.1 This shift to the subjective and existential raises the question of how we can reasonably discuss illness as well as disease at an academic level. After all, academics are also human beings who will, someday, become fatally ill.
1 This point is an important one, and I owe the distinction to the medical sociologist and writer Arthur W. Frank. See his At the Will of the Body: Reflections on Illness (Houghton Mifflin, 1991).
The distinction between "illness" and "disease" is one between seeing cancer, for example, "from the inside out"---as something that is a part of you---and seeing it objectively, as a diagnostician or medical researcher might view it, "from the outside in". Mark Edwards' article is all about the clashes that these two differing viewpoints entail---particularly for those who hold religious views.
Religious explanations are sometimes stigmatized as unscientific because they entail evaluative and purposive arguments. So religious traditions have an interest in encouraging a nuanced and sophisticated understanding of how scientific and medical models actually are constructed and evaluated. Specifically, religious traditions benefit when students and laypeople generally recognize that scientific models also have purposive and evaluative elements either built into the models themselves or underlying their creation or both. To be sure, the presence of purposive and evaluative elements should not be used to disparage the awesome accomplishments of scientific method.3 On the contrary, scientific modeling remains one of the most powerful and convincing approaches to knowing and understanding, explaining and interpreting, employed by human beings. But scientific modeling is a human activity, and reflects human values and purposes. That which is modeled—nature in the raw, as it were—may lack purpose or value or even meaning, but our scientific models do not. At the very least, then, the presence of purpose and value in scientific as well as in religious accounts should not, ipso facto, be used to disparage either one.

3On the science side of this debate, see James Robert Brown, Who Rules in Science: An Opinionated Guide to the Wars (Harvard University Press, 2001). For an analogous argument from the side of liberal Christianity, see James M. Gustafson, An Examined Faith: The Grace of Self-Doubt (Fortress Press, 2004).
Having thus set the stage, Edwards gives an explanation of cancer which he terms "a model of models", at a level of abstraction sufficient enough to take in all its different expressions and types:
Cancer can be understood as a byproduct of the evolution of complex animals (which include human beings). Cancer is one of the negative consequences, first, of complex animals' need to regenerate their tissues, and, second, of the evolutionarily beneficial ability they have to reshuffle their genes.

Complex animals need to constantly regenerate tissue. To accomplish this necessary regeneration, animals have various stem cells that can, through various steps, produce the specialized cells that need to be replaced. Animals also have the pathways—for example, the lymphatic and vascular channels—that allow the stem cells or their offspring to get to where they are needed. Cancer is a stem cell or one of its products running amok and spreading beyond its place of origin.

Without the ability to recombine genes, there would be no complex animals, no human beings. We would not have evolved if genes were fixed and could not mutate. To be sure, our cells are remarkably good at copying our DNA accurately and at repairing or eliminating copy errors. But occasionally an error gets through. Over many millennia these occasional mutations, filtered through the sieve of natural selection, have led to the variety of forms of life we find around us. But occasionally an error gets through—or, more likely, a succession of errors accumulating in a clone cell, its sub-clone, it's sub-clone's sub-clone, and so on—and is filtered through the sieve of natural selection within the microenvironment of the body and produces a malignant cancer.

Cancer is understood as a natural process. It is part of our evolutionary legacy and operates through successive mutations and selection within the microenvironment of the body. As a natural process, cancer develops by chance, follows no plan, and cannot be characterized as good or bad, right or wrong, purposive in the teleological sense, or unnatural.
As humans, however, we resist such a conclusion:
For many academics, questions of good or bad, right or wrong, teleology or purpose are observer relative. [Footnote omitted.] That is, they are human constructs and are projected by human beings onto natural entities or processes. By these lights, cancer cannot be understood as good or bad as a natural process; it is good or bad only in relation to our interests and interpretations.

Some religious traditions challenge this initial naturalistic assumption. They insist that such properties as goodness or purpose are intrinsic to things in a created cosmos. Or alternatively, that such properties may be considered observer relative if one admits that God is the observer whose constructs and projections are actions that bring about what they say.

We may debate whether nature can be described as purposive or whether questions of right or wrong, good or bad, or issues of teleology are appropriate or meaningful when applied to nature. But the study of nature is purposive. What is more, the study of nature reflects often strongly held value judgments (if only the strongly held value that values ideally have no place in scientific research!).
These value judgments, Edwards reminds us, are most often seen in the shifting priorities of cancer research: a number of years ago, "cancers that plagued males received far more attention than cancers exclusively suffered by females." He concludes this introduction to his subject with these central observations:
It is therefore important to distinguish between cancer as part of nature and cancer as a field studied by human beings. Nature may be neutral; science certainly is not. Nature may have no purpose; but scientists inescapably do. Scientists may be objective in that their results can be granted a high degree of reliability and "fit" with nature, but in their choice of what to study, why to study it, and for what ends, scientists are not value-neutral, nor are the sources from which scientists receive their funding. Religious ways of knowing may differ in significant ways from academic ways of knowing, but the similarities are greater than some admit. And when it comes to issues of purpose and value, the difference is expressed at most in degree, not in kind. Faculty, students, and laypeople who are cognizant of such nuances are better able to evaluate both scientific and religious arguments, and better able to gain from each worthwhile insight for their studies and for their lives.
The main body of Edwards' article is a profoundly insightful excursion into the different ways in which scientists and lay people view cancer. The tendency of science is to generalize from individual cases, while a person who is suffering from a particular cancer experiences it as unique. The point was driven home in the case of a famous scientist who died of cancer:

. . . As the disease model becomes more sophisticated, clinicians may be better able to specify the likelihoods or probabilities of the course her disease will take. But as the paleontologist and cancer sufferer Stephen Jay Gould reminds us in a famous article, the median is not the message.8 "We now come to the crux of practice," Gould writes,

I am not a measure of central tendency, either mean or median. I am one single human being with mesothelioma, and I want a best assessment of my own chances—for I have personal decisions to make, and my business cannot be dictated by abstract averages. I need to place myself in the most probable region of the variation based upon particulars of my own case; I must not simply assume that my personal fate will correspond to some measure of central tendency.9
8 Stephen Jay Gould, "The Median Isn't the Message," Discover, June 1985.
Stephen Jay Gould, Full House: The Spread of Excellence From Plato to Darwin (Harmony Books, 1996), 49. Gould survived mesothelioma, labeled an "inevitably fatal form of cancer," only to succumb to a different cancer 20 years later.
The conflict between the general and the specific, the rational and the personal, is at its sharpest when deciding on measures by which to treat a particular person's cancer. The effort, still being pursued in academic quarters, to reduce human intelligence to certain discursive rules that can be embodied in a computer program clashes with the intuitive approach of clinicians who trust their own, fallible diagnoses only so far, and who act (again, fallibly) on their sense of "what treatment regimen is best for a particular patient, not patients in general."  
Decisions about treatment have an ameliorative purpose: their reasoning presupposes that treatment should make the patient's "condition" better than it would be without treatment. . . . So, from the outset, the academic who is also a clinician is guided by purpose and immersed in value judgments, starting with, "Will this treatment help this particular patient or at least do no harm?"

But what constitutes help? And how does one trade off between help and harm? For example, most chemotherapy has harmful side effects. How does one weigh the possible benefit from chemotherapy against the certain harm that it will cause? Practical reasoning deals with just such questions.

The patient is also immersed in purposive and value judgments. . . .  So how do I trade length of life for quality of life? What are my goals in the choice of treatment, and how do my values guide me?

The reasoning and trade-offs can become yet more complicated. What if the clinician and I disagree on what treatment is "best," given my particular case, his clinical judgment, and my thoughts about quality and quantity of life? One plausible answer is that one person's interests—in this case, probably the patient's—should be seen as morally overriding. After all, isn't it my life, my health, my sense of trade-off between quantity and quality of life that is at issue here?

Naturally, a patient can say "no" to a treatment, and except for cases where the patient's judgment is thought to be crucially impaired and guardians or the courts step in to represent the patient's interests, that "no" is final. But refusing treatment differs significantly from demanding that a certain treatment be accorded.

The patient often cannot and sometimes should not be the one who decides. The patient's wishes cannot, for example, trump a clinician's judgment when the patient wants a treatment that the clinician thinks is inappropriate, dangerous, or even morally questionable (i.e., entails unacceptable risk to the patient or to others). Further, just because a patient wants a particular treatment does not mean that her insurance company will pay for it, even if the patient's clinician also favors the particular treatment. There may also be limits on other resources: for example, everyone who wants a transplant does not get one, because there is a limit to available organs. And so it goes.
Edwards now returns to the crucial distinction between cancer as illness and cancer as disease:
Disease talk invites the patient to think of the body as a "site" "out there." In disease talk the patient adopts the perspective of the physician or scientist. Disease talk lives and breathes academic objectivity. Illness is the experience of living through the disease from "inside out." It attempts to capture the lived experience of one who has the disease. It lives and breathes existential subjectivity.

Disease talk is appropriate in many contexts and can be helpful to the patient, but it has limitations. I may accept rationally that multiple myeloma is an unfortunate but natural by-product of evolutionary processes. I may find it comforting (at least at one level) that my disease developed by chance, without plan or purpose. I may wrestle with all the practical wisdom I can command with decisions about diagnosis and treatment. But in wrestling not with my disease but rather my illness, I personally may need more than what the academy currently offers in all its sciences, natural and social.
The scientist's level of generality obscures the highly personal questions which the individual cannot escape: 
How, for example, do I understand and explain to myself my existence as a singular, situated, thinking being who is living with an incurable, fatal disease? How do I understand my mortality and vulnerability? How do I understand the fear that this raises? How do I live with as much good humor as I can muster with the pain, the disorientation, the fears, and the other unhappy by-products of a nasty disease and the associated nasty ways of treating it? How do I deal with uncertainty, despair, and hope? How do I work all this into the story of my life? Where does it feature in my understanding of my destiny? How do I deal with all this from the inside of lived experience, rather than from the outside of detached analysis or prescription? And how do the various approaches to reasoning and judging in higher education help or hinder me in tackling such questions?

These are questions that are deeply and ineluctably raised by every human being fortunate to live long enough to gain a certain experience and maturity and who, then, has to deal with a life-threatening disease. Traditionally, they are questions addressed by religion (and by great literature and art). I do not claim that religious traditions always address such questions well. Quite the contrary. . . . 
Here Edwards recites the venerable tendency of religion to equate disease with punishment for sin---most particularly when confronted with mass epidemics, like the plague in the Middle Ages. While many religious people in the present day no longer hold such a view, traces of the sentiment abide with us in a subtler form, and express themselves in our attitudes toward a fatal illness like cancer. Edwards quotes a passage from Susan Sontag's Illness as Metaphor to make the point (p. 57):
Illness is interpreted as, basically, a psychological event, and people are encouraged to believe that they get sick because they (unconsciously) want to, and that they can cure themselves by the mobilization of will; that they can choose not to die of the disease. These two hypotheses are complementary. As the first seems to relieve guilt, the second reinstates it. Psychological theories of illness are a powerful means of placing the blame on the ill. Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it.
Then he continues:
It is worth pondering whether calls for "a positive attitude" and a "determination to lick this thing" become an anemic psychological substitute both for a more profound understanding of the evolutionary and biological nature of cancer and for a religious or philosophical view that more deeply addresses, even if it may not satisfactorily answer, the painful questions that fatal illness poses. The persistence and vigor of a psychological human response to disease (or even of a "sublimated spiritualism," to employ Sontag's term) underlines how the "rational" and "reasonable" ways of knowing that higher education offers may leave important questions not only unanswered but unaddressed.

We may outgrow or reject the religious answers of our youth. We may find implausible or even revolting the answers given by the religious traditions found in our society or elsewhere in the world, for reasons including those we just treated in the last few paragraphs. As experiencing human beings, we can ignore or bracket these questions for a time, but we can never really escape them. They arise out of life itself. They are questions of deep meaning, value, and purpose.
Next, Edwards examines another prevalent view of cancer in contemporary society. He quotes extensively from both Sontag and Arthur W. Frank (cited in his first footnote, quoted above). I quote him here at length, because the points he makes are the heart of his essay:

Seen from the "inside out," another striking feature of discussions around cancer is how often the metaphors are martial. "I've been attacked by cancer." "I'm fighting back." "My doctors and I think I can lick this thing." Again, Sontag captures the images well:
The controlling metaphors in descriptions of cancer are, in fact, drawn not from economics but from the language of warfare: every physician and every attentive patient is familiar with, if perhaps inured to, this military terminology. Thus, cancer cells do not simply multiply; they are "invasive." ("Malignant tumors invade even when they grow very slowly," as one textbook puts it.) Cancer cells "colonize" from the original tumor to far sites in the body, first setting up tiny outposts ("micrometastases") whose presence is assumed, though they cannot be detected. Rarely are the body's "defenses" vigorous enough to obliterate a tumor that has established its own blood supply and consists of billions of destructive cells. However "radical" the surgical intervention, however many "scans" are taken of the body landscape, most remissions are temporary; the prospects are that "tumor invasion" will continue, or that rogue cells will eventually regroup and mount a new assault on the organism. [Id. at 64-65.]
Cancer is not an outside invader. It is a part of ourselves, unhappily gone astray to be sure—and a part of us that we hope to change. But it is still part of us. Frank, in his At the Will of the Body, points to the peculiarity of this way of expressing things, speaking of his own wrestling with cancer:
The tumors may have been a painful part of me, they may have threatened my life, but they were still me. They were part of a body that would not function much longer unless it changed, but that body was still who I was. I could never split my body into two warring camps: the bad guy tumors opposed to the naturally healthy me. There was only one me, one body, tumors and all. [Frank, op. cit., at 84.]
And he continues:
Thinking of tumors as enemies and the body as a battlefield is not a gentle attitude toward oneself, and ill persons have only enough energy for gentleness. Aggression is misplaced energy. You may feel anger because of the way you are treated, but that is different from fighting yourself. [Id. at 85.]

Much the same is true for pain. "When we feel ourselves being taken over by something we do not understand, the human response is to create a mythology of what threatens us." Frank suggests,
We turn pain into "it," a god, an enemy to be fought. We think pain is victimizing us, either because "it" is malevolent or because we have done something to deserve its wrath. We curse it and pray for mercy from it. But pain has no face because it is not alien. It is from myself. Pain is my body signaling that something is wrong. It is the body talking to itself, not the rumblings of an external god. Dealing with pain is not war with something outside the body; it is the body coming back to itself. [Id. at 31.]
Here, it would seem, a better understanding of science might help reasoning about illness from the inside out.
This "better understanding", however, eludes those who remain within the narrow world of hypothesis, experiment and observation. 
Unfortunately, many health providers act and speak in ways that make it difficult for cancer patients to recognize "the body coming back to itself." The objectifying, distancing stance that turns the body into a "site" where there is "cancer" that "must be treated" can quickly lose sight of the person who is that "site" and is experiencing all that it means to be "treated"— including the worries, the fears, and the sense of loss and change that accompanies a person's illness. At its worst in this regard, modern medicine can descend into a war to the death between doctors wielding the miraculous tools of modern science against the exquisitely evolved defenses of cells run amok. The battlefield becomes the patient, whose illness and all its experienced meaning is overlooked, ignored, or denied.

In what ways are we in the academy able to reason about such conflicting views and experiences without limiting our answers to a narrow range of what constitutes reasoning and rationality, objectivity and distance? Can insights from case-based practical reasoning help in this regard as well? What about insights gleaned from our religious traditions?

It goes without saying that religious and philosophical traditions are not the only communities to care about the distinction between disease and illness. Psychologists, nurses, doctors, experts in hospice care, and others have wrestled with how to understand and help the patient deal with not only her disease but also her illness. The issues are not easy, and proposed resolutions are frequently unstable and shifting.
Now Edwards delves into what he himself is best able to contribute: a unique perspective, "from the inside out", on what it feels like for a person who is both academic and religious to be a cancer patient.
Let me illustrate the complicated, shifting balancing act some forms of practical reasoning entail by examining Frank's thesis on "the cost of appearances." Frank identifies two types of emotional work involved in being ill. First, the patient must deal emotionally with fears, frustrations, loss, and the search for "some coherence about what it means to be ill." But second, the patient must deal emotionally to keep up with the appearances expected of him or her by a society of healthy friends, co-workers, medical staff, and the patient's own internalized self-identity. Frank sees this second type of emotional work as inherently problematic. "When I tried to sustain a cheerful and tidy image," he explains,
it cost me energy, which was scarce. It also cost me opportunities to express what was happening in my life with cancer and to understand that life. Finally, my attempts at a positive image diminished my relationships with others by preventing them from sharing my experience.
"But," Frank concludes with some asperity, "this image is all that many of those around an ill person are willing to see." [Id. at 67.]

Frank sees society leaning rather hard on the ill person to adopt the role of model patient. And the patient, in his or her dependence, may be forced to strike a deal between external expectations and internal needs. "To be ill is to be dependent on medical staff, family, and friends," Frank explains:
Since all these people value cheerfulness, the ill must summon up their energies to be cheerful. Denial may not be what they want or need, but it is what they perceive those around them wanting and needing. This is not the ill person's own denial, but rather his accommodation to the denial of others. When others around you are denying what is happening to you, denying it yourself can seem like your best deal. To live among others is to make deals. We have to decide what support we need and what we must give others to get that support. Then we make our "best deal" of behavior to get what we need. [Id. at 67-68.]
I conclude from my own experience with severe illness that there is much truth in Frank's description of the deal-making that we ill folks go through to satisfy the expectations of others and to secure as much care and support from providers as possible.
However, this is not the end of the analysis. For the impact of a fatal illness has to be assessed from the standpoint of the caregiver, as well:
But in his zeal to recover what is commonly overlooked—namely, the ill person's self-denying and enervating accommodations to the expectations of family, friends, and the medical system—Frank may have minimized analogous costs borne by family and caregivers when ill persons insist on their right to fully express fears, angers, loss, and incoherence. The patient's unbridled self-expression may be healthy—a reaching out to ask others to understand what the patient is experiencing—but it imposes a cost on family and friends, who are also dealing with fear, anger, loss, and incoherence because of their loved one's illness. It also puts additional demands on frequently overworked caregivers, who have multiple needy patients to deal with.

So who does rightly get to demand what of whom? How's the balance struck? How does one reason and make judgments regarding such conflicting claims on the emotions, expectations, needs, and behavior of others? How does one balance the gains here against the losses there? Again, there are no certain answers to such questions, only reasonable, shifting approximations.

Is it unreasonable to struggle with questions for which we know at the outset we'll secure no agreed-upon answers—or, at least, no answers that will find agreement much beyond the confines of one's community of practice? This is not just a question to be posed to religious communities. Disciplinary communities are as capable, I would submit, of asking pertinent questions for which they find no consensus on reasonable, much less "rational" answers.
There is a value in asking questions for which there are no answers; the questions themselves may be the vehicle to a broader understanding of reality in general, and of illness in particular. 
More far out: Is it possible (and if so, is it appropriate) that modern scholarship limits the questions it asks in exchange for a greater likelihood of depth or precision or "certainty" secured by those limits? That may be a worthwhile trade-off, but one must then ask whether by asking questions of a certain answerable sort, modern scholarship may be shortchanging the range of true human reasonableness. What is being lost in questions bypassed because they fall short of imposed standards of rationality or even reasonableness, certainty or even reasonable certitude?

I cannot help but wonder whether self-imposed limitations may put some of us in the position of the man looking for his car keys under the lamppost because it offers the most illumination. Modern scholarship may have achieved great power and purchase by limiting what it takes to be knowledge and reason. But this can verge into dogma: there are no keys unless under the lamppost. Or the keys not found under the lamppost are not true keys. Or they are keys by courtesy designation, only. Are we shortchanging ourselves?
Edwards, who has obviously gone down this road himself, concludes with a call for academicians to open themselves to the possibilities of other ways of "knowing", as valued most prominently in faith-based communities.
There is an aspect to knowing and judging in complex, contingent, and situated cases that cannot be captured in discursive rules. At least with expert practitioners, knowing and judging rely to varying degrees on trained imagination and experienced intuition. Such knowing and judging rely on tacit understanding, to employ the philosopher Michael Polanyi's term. A significant component of religious understanding and commitment also arises out of the human ability to intuit integrated wholes from specific, contingent details. This ability is at play when religious inquirers interpret narrative texts; when they reason through specific cases of conscience and reach probable (but rarely certain) judgments regarding the appropriate thing to do; and when they address questions of meaning, value, and purpose from the inside out. So, religious traditions have a stake in acknowledging and defending tacit understanding. So, too, do even the "hardest" scientific disciplines, which, in practice, also have depended on intuition and nondiscursive insight to surface some of their most fruitful discoveries.

Finally, to claim that religious traditions have a stake in narrative, case-based, subjective or existential, and tacit ways of knowing does not mean that the use to which religious traditions put these various ways of knowing necessarily leads to true understanding or right judgment. To apply legitimate methods to appropriate problems is crucial to sound reasoning, but it does not guarantee truth. However, once these methods are recognized as legitimate when applied to appropriate issues or problems, their use by religious traditions can no longer be employed as ipso facto grounds to disqualify religious claims as meaningful knowledge in general. That awareness may allow academics to see their own disciplines better and make them more willing to entertain different, and perhaps even religiously inflected, ways of knowing.
All in all, this was a very worthwhile read. I commend it to those who are having to deal with the realities of cancer "from the inside", whether as patient, or as caregiver. It is a gentle call to recognize that while we face ourselves when we face our illnesses, we are not alone. For as God makes us in His image, we are all ultimately in His hands.

1 comment:

  1. This reminded me of when my father was dying last summer.

    I especially liked the part about "the cost of appearances": the energy expended at a time of low energy, the need to please caregivers and the caregivers limits of empathy vs. the loss of authenticity. It is very sad to think of the dilemma for the ill person.

    I think hospice programs are a very good thing with their social worker and chaplain visits. But one must be only expected to live 6 months to qualify.