Tuesday, February 16, 2010

Please Dr. Gupta, I Don't Want to Go, Part 3

This is my third and final reflection on the book Cheating Death by Dr. Sanjay Gupta.  You can read the earlier reflections here and here.

There is another ethical issue raised by Dr. Gupta's book, if not by Dr. Gupta. It is really corollary to the others, and yet perhaps the most important. Certainly, it's the issue that affects the most people.

We have been talkinq about, and at times wrestling with, ideas of the "good death" and the right to die. That has been based first on a recognition that everyone dies.

Notwithstanding the title of Cheating Death, Dr. Gupta acknowledges that death is inevitable. Even the best techniques we have, including the cutting edge treatments in the book, can only delay death, can only forestall death at one time from one event. So, if we're going to play out the gambling metaphor, we might "cheat" death today, but eventually the "House" always wins.

That said, you might not get that from the book. It's true that Dr. Gupta acknowledges this fact, if only late in the book, and perhaps somewhat grudgingly. However, I don't know that you'd get that from any of the physicians profiled in the book. Consider the comment from Dr. Lance Becker of the University of Pennsylvania, who considered the thought that the patient hasn’t died until “the doctor gives up.”

That's not a new attitude, really. However, it's an attitude that has fallen out of favor. For some time now we have been seeking to understand and to provide for patients "a good death." While that might look somewhat different for each individual patient, it includes a respect for the patient's choices, a commitment to the patient's comfort, and support for the patient's family and network. Most important, it includes the recognition that each of us will die, and that the point will inevitably come when that is beyond the control, beyond the decision, of any physician (or anyone else, for that matter). This has been fundamental for the growth of hospice and palliative care. Especially, it has been fundamental for the education of physicians to make use of hospice and palliative care orders.

So, what about physicians who are convinced that a patient isn't dead until the doctor decides to "give up?" And what about the reading public that sees those headlines?

There are two sorts of trouble associated here. The first is simply that even aggressive resuscitation physicians such as Dr. Becker actually know what Dr. Gupta acknowledged: at this point we only delay death, we don’t really “cheat” it. We can increase survivability of particular events, at least under the best of circumstances. We can extend individual lives, and we can raise the average life span for our population; but I don’t foresee any time soon that we’ll actually have to deal with the ethics of people not dying of “natural causes,” much less of traumatic causes.

The second is that for much of the reading public “the best circumstances” are simply out of reach. I don’t mean economically out of reach. I mean physically and geographically out of reach. Major medical research centers are doing research, making breakthroughs, and establishing new standards of care. But, an awful lot of folks don’t live within reach of a major medical research center, much less the few centers (perhaps the one center) doing research on their individual problems. How are we going to offer breakthroughs to them? And, of course, in fact they are economically out of reach as well.

But more basic and more troubling in all of this is the simply question of how much care is enough, and how much might be too much? Will new tools and techniques give new impetus for a resurgence of these opinions? Will these opinions multiply cases like Terri Schiavo and Sam Golubchuk, in which families pursue health care in the face of medical evidence that it will be futile?

Let’s take, for example, the researchers using functional magnetic resonance imaging (fMRI) to study patients in vegetative states. While Dr. Gupta does make reference in the book to early studies, and to the changes they have suggested, the issues have gained new attention recently with the publication of a new article last week in the New England Journal of Medicine. Titled “Willful Modulation of Brain Activity in Disorders of Consciousness,” the article has been noticed by the Washington Post and the Wall Street Journal. In the study 54 patients with severe brain injury were studied – 23 in a vegetative state, and 31 in a minimally conscious state. They were also compared to 16 healthy control subjects. Functional MRI allows researchers to observe in real time how, and especially where, the brain is using oxygen. Based on previous studies, and confirmed by the control group, the researchers had an idea of what parts of the brain were normally involved in visualizing and imagining various kinds of tasks. They asked each subject to imagine specific tasks, such as hitting a tennis ball with an instructor, or navigating their way through a known town. They then asked subjects to answer Yes or No questions, using one visualization for Yes and another for No.

The results were interesting, if small. Of the 54 injured patients, five appeared to have a willful response to the instructions to imagine. If the five, only one was able to respond to Yes/No questions as instructed.

So, what does the study tell us? First, it tells us that further studies are possible and possibly worthwhile. Second, it tells us that the tool of fMRI can give us further information about what might be happening in the brains of patients so injured that they are either in minimally conscious or vegetative states.

It also suggests that 90% of the time the physicians were right in assessing that these patients were not conscious and not able to respond meaningfully to stimuli around them. While this is an interesting and possibly important study, it doesn’t really change what we knew about 49 of these 54 patients’ consciousness, or about their likelihood of returning to consciousness.

This study also caught the attention of Religion Dispatches (and subsequently of my colleagues at the Episcopal CafĂ©), for presented the unfortunate headline, "When Are You Dead? Science Just Made the Work of Religion a Bit More Difficult.” The reason I think the headline unfortunate is that it speaks to me of just the sort of leap that some patients’ families might want to make based on this study and earlier research. It begins with a point of confusion. No one believes that patients in minimally conscious or vegetative states are “dead.” Neither of these conditions is the same as brain death.

Instead, these are conditions that lead to difficult decisions for professionals and families alike. These patients are not dead, and some small percentage of them may well be more alert than we know. However, for most of us simply respiring and circulating doesn’t constitute life, or at least a life we want to live. Is human life something qualitatively different than vegetative life? In studies and in my experience, most folks also want life to include at least the ability to interact, if not full functional autonomy. While some communities (for example, the Roman Catholic Church) would state that human dignity is inherent, and unaffected by differences in cognitive state, many folks – in my experience, most – would not find human dignity in lives that did not include human awareness and interaction.

But, what are we to make of the perhaps 10% who are somewhat aware? They bring us back, I think, to my two earlier issues. First, remember that for the other 90% our diagnosis and prognosis haven’t changed. Indeed, while for the 10% our assessment of their capacity has changed, our prognosis might not be changed. Even with increased awareness, it isn’t clear that they will be at any less risk of the conditions that threaten patients who can’t move, including pneumonia, skin breakdown, and other infections that can overwhelm them. Even for the 10% we haven’t cheated death. We have only suggested that they are more aware, and so more capable of experiencing, including experiencing suffering. Have we gained anything if we’ve simply identified a new form of “locked-in syndrome,” where there is some cognitive ability but no capacity to express it?

Second, it raises the question of how we might use this new tool. Will we begin to request fMRI studies for all patients diagnosed as minimally conscious or vegetative? Remember that for perhaps 90% the study will only confirm what has already been diagnosed. Even for the other 10% it may not change their prognosis. Again, we have no evidence that this information will make their lives better, much less longer. In that context, will insurance plans be willing to pay for these studies for these patients? Will more hospitals justify the expenses of equipment and professionals to do these studies? Maybe; but then again, maybe not, whether this decision to ration is based on the ability of the patient to afford insurance, or on the ability of the insurance provider to afford the patient.

And so we are left with the same questions – questions that are matters of clinical ethics for most, and intensely personal for some, both clinicians and families. In this sense the Religious Dispatches headline might have a point: for those of us who help clinicians sort out these questions of what makes life worth living, and at what point to let go, this may well complicate expectations, without really offering any new hope. In our time we have redefined the concept of “a fate worse than death” to include interventions that prolong death without offering any additional life. We have yet to see whether this new information will offer help, or will simply tempt us to prolong treatments that, for lack of meaningful promise, become extended assaults on physical integrity and human dignity alike.

So, once again I have to say, “please, Dr. Gupta, I don’t want to go.” Or perhaps this time, “please Dr. Gupta, I do.”

Thursday, February 11, 2010

More Reflections on Vocation at the Cafe

This past Sunday, when someone asked about the sermon, I said that I had to decide, because I'd actually prepared two.  One of those is below, my last post.  However, the second - really the first, because it was written earlier - is up today at the Episcopal Cafe.  It is also on the theme of vocation, but with something of a different focus.

So, head over to the Episcopal Cafe to see my latest contribution.  And while you're there check out some of the other good stuff there.  We want to show good things about the Episcopal Church, and to share those with everyone.  There are news items, essays and sermons like mine, reflections on spiritual life, and on the arts.  Go, peruse, enjoy; and leave a note, a comment before you leave.  I enjoy writing for the Cafe.  I think you'll really enjoy reading what we've offered there.

Sunday, February 07, 2010

The Real Question: Sermon for Epiphany V, Year C

 This sermon, or something like it, was preached February 7, 2010, at St. Andrew's Episcopal Church, Kansas City, Missouri.

When I was a boy, I spent a lot of time fishing. I grew up in the heartland of the Tennessee Valley Authority. For some, TVA is largely of historical interest. I suppose, too, that some of its recent headlines have been a bit messy.  But for those of us who grew up with it, TVA was important for the many lakes on the Tennessee and its tributaries. We called them “the Great Lakes of the South.” Oh, yeah, there was all that power generation; but for many of us the lakes were more important.

So, I spent a lot of time fishing, mostly with my father. Now, in most ways we weren’t spectacular fishermen. We didn’t spend our time running up and down the lake looking for the best location, where we might find the biggest bass. We were more into production, really. Back in the days before creel limits we kept what we caught, all of which found its way into the skillet.

I think that was why we were really at our best fishing for bluegill. Really, we used that term for all of the pan-size, roughly hand size sunfish – bluegill, warmouth, green sunfish, shell crackers. We called them all bluegill, and we caught them with enthusiasm.

We particularly liked to fly fish for them. This wasn’t the dramatic stream walking of the trout or salmon fisherman. This was no “A River Runs Through It.” We would move slowly along the edge of the lake, paddling slowly in those days before trolling motors, using nine foot rods to cast popping bugs and small wet flies into the shallows. The nice thing about it was that in the heat of the summer, in the middle of the day when nothing else would bite, the bluegill would be hot and hungry.

When I was a teenager, we developed our best technique. We bought a couple of surf mats, the heavy-duty rafts of rubberized cloth. We would choose a long stretch of the bank that we wanted to work. We’d anchor the boat and then climb out on the rafts with our rods, a few spare flies, and a couple of stringers. We’d sit on the rafts, and begin kicking with our feet, moving along the bank.

Most days we’d move in opposite directions, working out and back, and meet again at the boat. We were often out of sight of one another. Which was how it was, I imagine, that the two guys trolling by saw me and didn’t see my dad.

Now, I want you to imagine what they saw. Here was this teenaged boy, wearing a hat and a pair of shorts, sitting on this mat with the water rising toward his waist. He was a bit chunky, and his back was sunburnt despite a heavy tan; and he sat there, casting with a fly rod, at a bare, rocky bank.

They were maybe twenty feet behind me as they passed, and I raised a hand and waived. They laughed, and said, “How’s it going”

“It’s all right,” I said,” You catching any?”

“A couple of cats, and a few crappie. How about you?”

“Not bad,” I said. And I reached down to the front corners of the mat and lifted up two chain stringers, each with two or three bluegill on each hook, maybe 35 or 40 in all. I must have sunk six inches just lifting them up. I remember those guys moving down the lake, their mouths hanging open. I wondered if they told the story and what they said. “Did you see that kid? Did you see all those fish? I would never have believed.”

Jesus was walking along the lake in the morning, with a crowd following behind. The crowd was insistent, pressing. So, when Jesus found some fishermen and a couple of boats, freshly landed after a poor nights’ fishing, he stepped aboard one and asked them to pull away a bit, to let him have a little room. There he sat in the front of the boat, teaching the crowd that stretched along the shore.

He came to the end of his lesson and turned to the fishermen. “There are fish out there,” he said. “Move out where it gets deep and let out your nets.”

You have to wonder what Simon thought. This guy Jesus didn’t look or sound like any fisherman they had ever seen. Still, there was something impressive about him; and what could it hurt? “Well,” Simon said, “we were out all night with no luck, but if you say so….”

And when they did, the fish were there – so many that he and his brother in their one boat couldn’t handle the net. They called to the others, to James and John and their father Zebedee for help; and even with their help it was almost more than they could handle. The nets were filled to the point of breaking, the boats to the point of sinking.

Now, it would have been no surprise at this point if they had just managed to pull the catch into the shallows where they could handle it, and said, “Did you see that man? Did you see all those fish? I would never have believed.” But, they did believe. Indeed, Simon believed so profoundly that he fell in the boat and crawled to Jesus and said, “No, no, Lord, get away from me. I’m not worthy.”

But Jesus didn’t go away. Instead, he said, “Don’t be afraid. I have a new task for you. From now on you’ll be catching people.” And once they’d gotten the boats and the fish ashore, they went. They left it all, and followed Jesus.

Time and again in Scripture, when God calls someone the first response is, “Not me, Lord. I’m not worthy.” Isaiah was in the Temple to worship, and had an overwhelming vision of the presence of God. His first reaction was, “I’m a man of unclean lips, of a people of unclean lips. I’m not worthy.” Paul told the Corinthians that the risen Christ had called him to be an apostle “last of all, like a premature child. I had persecuted the church, and I wasn’t worthy.” From Moses at the burning bush to Paul in the Damascus Road, God called and the first response was, “Not me, Lord. I’m not worthy.”

And for all the honor we show for the heroes and heroines of the people of God, in fact they weren’t worthy. God called whom God wanted, not waiting until they were ready, much less until they’d earned it. He purified Isaiah and gave him a voice. He gave Paul new vision, and showed him a new way. He showed a group of fisherman his anointed Son. God called whom God wanted. Then God gave them the grace and the skill they needed to participate in God’s plans.

And what about our call? We do believe we all have one, don’t we? Isn’t that one of the consequences of our baptism, of the share we receive in God’s Spirit, that each of us has a vocation, a call from God? Isn’t that one of the purposes of the Eucharist, that we are nourished and empowered for the vocation that God has given us?

But, how often do we think about that, really? And when we do, how often do we also react, “Not me, Lord. I’m not worthy”?

Now, you might say to me, “That’s easy for you to say. You’ve found your vocation. You’ve been living into it for a long time.”

Well, yes, and no. For one thing, I know where God has called me – so far. One of the things I tell those exploring a call is that the question of vocation isn’t simply “where is God calling me.” It’s “where is God calling me now?”

But more important is this: I’m not worthy, either. I don’t need to make any great revelation to tell you that. None of us is worthy, any more than Isaiah or Paul or Peter and Andrew. Paul would say in another letter, “All have sinned and fall short of the glory of God.”

No, God calls whom God wants, and then gives the grace and the ability to participate in God’s plan. And so for each of us, the question isn’t whether God calls. The question is, when we stand in God’s presence, will we respond? Will we leave what we know, even in the midst of success, to follow Jesus? And when God asks, “Who will go,” will we answer, “Here am I. Send me.”

Tuesday, February 02, 2010

This Week at Grand Rounds: Chaplain Scott Presents (Among Others)

Grand Rounds, the weekly carnival of medical and health care blogs, is up at "Musings of a Distractible Mind."  My post , "Please Dr. Gupta, I Don't Want to Go, Part 1," was accepted for Rounds this week.  Dr. Rob, whose mind is, I suppose, the one easily disracted, has delegated the writing to Punxatawny Phil of Groundhog Day fame.  Yes, siblings, Phil did get my name wrong, but I have to blame that in part on the layout of my blog that keeps making the second L in my name look like a middle initial.  But, hey, I'm all for supporting the creative efforts of meteorological rodents.

While you're there, take a look at some other posts of interest to chaplains.  There's the psychologist who writes about the difference between remembering and reliving traumatic events.  There's the physician writing about going to a patient's funeral.  There's the post about patients receiving surgeries they wouldn't have chosen.  There are clearly a number of articles here of interest, not to mention an attachment with a number of posts about providing care these days in Haiti.

So, step into Grand Rounds.  Check it out this week, and see if it's an event you want to follow weekly.  You never know what you might find - even if it's in a groundhog's burrow!