Monday, June 30, 2008

Taking Up the Gauntlet - At Least to Examine It

The Archbishop of Canterbury has responded to the Statement of the Global Anglican Futures Conference (GAFCON) and its included Jerusalem Declaration. You can read the statement here. You can read comments on it at all the usual suspects.

Most folks out there – at least, most folks in the basically progressive blogs that I peruse – think this is a good statement. Some think it better than others, of course, but most approve. I certainly think it is clearer than most statements from Canterbury; but then in this case the issues, or at least those addressed in the response, are more political and institutional than theological. However, it seems to me that this will turn out to be an example of how we talk past each other.

Take, for example, this assertion:

The 'tenets of orthodoxy' spelled out in the document will be acceptable to and shared by the vast majority of Anglicans in every province, even if there may be differences of emphasis and perspective on some issues. I agree that the Communion needs to be united in its commitments on these matters, and I have no doubt that the Lambeth Conference will wish to affirm all these positive aspects of GAFCON's deliberations. Despite the claims of some, the conviction of the uniqueness of Jesus Christ as Lord and God and the absolute imperative of evangelism are not in dispute in the common life of the Communion.

First and foremost, while these “tenets of orthodoxy” may well be shared by “the vast majority of Anglicans in every province,” those who wrote and who signed on to the GAFCON Statement find the differences of emphasis and perspective to be critical. Differences over how we interpret Scripture (largely literally, or largely through the lens of historical critical method); the role of bishops in the Church (pastoral or educational, monarchical or collegial); the authority of the “historic Anglican formularies,” as the Covenant Design Group has described them; the meaning of relationships and boundaries within a communion of churches (Anglican, “Fellowship of Confessing Anglicans” (GAFCON separatists), or others): all of these reflect differences of emphases and perspectives that are significant and formative for those affirming the Statement.

Second, I think it remains to be seen in what form or manner “the Lambeth Conference will wish to affirm all these positive aspects of GAFCON's deliberations.” Once again, there are aspects of both the statement and the Jerusalem Declaration that will have wide support; but hardly all. I sincerely hope that Lambeth will not affirm elevation of issues of human sexuality to the importance of Scripture and the historic Creeds, or even to the level of the historic Anglican formularies. In light of the structure that has been given to this Lambeth, I hardly expect any statement at all. I doubt that the Lambeth Conference will wish to affirm all these positive aspects of GAFCON's deliberations” in any way that the new Fellowship of Confessing Anglicans will accept, or even acknowledge.

Third, the Archbishop comments, “Despite the claims of some, the conviction of the uniqueness of Jesus Christ as Lord and God and the absolute imperative of evangelism are not in dispute in the common life of the Communion.” The problem with this is that those most committed to this Statement and to FOCA are precisely those who are making the claims. I don’t agree with them, but I believe that they really believe the claims they make. They believe and are committed to the claim that the Episcopal Church and the Anglican Church of Canada (not to mention those who might actually agree) are proclaiming “a new gospel.” They also believe that the Archbishop of Canterbury has essentially lost his moral authority, for lack of exercising moral authority over those two provinces. They will not be persuaded by this statement from this source. The same is true of his later statement, “I believe that it is wrong to assume we are now so far apart that all those outside the GAFCON network are simply proclaiming another gospel. This is not the case; it is not the experience of millions of faithful and biblically focused Anglicans in every province.”

All the issues of division raised by Archbishop Williams’ response are meaningful. His speaking to them will be welcomed by those who wish to retain some possibility of reconciliation, and/or some sense of the Anglican-Communion-as-we-have-known-it. It will, however, be dismissed by those who have despaired of both.

I said in my last post that Canterbury cannot ignore the metaphorical gauntlet thrown at his ecclesiastical feet. To his credit, he has not ignored it. He has perhaps offered some comfort to those who will still work with him. It won’t change the trajectory implied by the GAFCON Statement and the Jerusalem Declaration.

Saturday, June 28, 2008

The Gauntlet is Thrown Down.

The Statement on the Global Anglican Future has been released at the close of the Global Anglican Futures Conference. Some of its highlights:

…we grieve for the spiritual decline in the most economically developed nations, where the forces of militant secularism and pluralism are eating away the fabric of society and churches are compromised and enfeebled in their witness…. To meet these challenges will require Christians to work together to understand and oppose these forces and to liberate those under their sway. It will entail the planting of new churches among unreached peoples and also committed action to restore authentic Christianity to compromised churches.

The first fact is the acceptance and promotion within the provinces of the Anglican Communion of a different ‘gospel’ (cf. Galatians 1:6-8) which is contrary to the apostolic gospel.

The second fact is the declaration by provincial bodies in the Global South that they are out of communion with bishops and churches that promote this false gospel.

The third fact is the manifest failure of the Communion Instruments to exercise discipline in the face of overt heterodoxy. The Episcopal Church USA and the Anglican Church of Canada, in proclaiming this false gospel, have consistently defied the 1998 Lambeth statement of biblical moral principle (Resolution 1.10). Despite numerous meetings and reports to and from the ‘Instruments of Unity,’ no effective action has been taken, and the bishops of these unrepentant churches are welcomed to Lambeth 2008.

Published as a part of it is the Jerusalem Declaration. Some of its points:

The Bible is to be translated, read, preached, taught and obeyed in its plain and canonical sense, respectful of the church’s historic and consensual reading.

We uphold the Thirty-nine Articles as containing the true doctrine of the Church agreeing with God’s Word and as authoritative for Anglicans today.

…we uphold the 1662 Book of Common Prayer as a true and authoritative standard of worship and prayer, to be translated and locally adapted for each culture.

We acknowledge God’s creation of humankind as male and female and the unchangeable standard of Christian marriage between one man and one woman as the proper place for sexual intimacy and the basis of the family. We repent of our failures to maintain this standard and call for a renewed commitment to lifelong fidelity in marriage and abstinence for those who are not married.

We uphold the classic Anglican Ordinal as an authoritative standard of clerical orders.

We recognise the orders and jurisdiction of those Anglicans who uphold orthodox faith and practice, and we encourage them to join us in this declaration.

We celebrate the God-given diversity among us which enriches our global fellowship, and we acknowledge freedom in secondary matters. We pledge to work together to seek the mind of Christ on issues that divide us.

We reject the authority of those churches and leaders who have denied the orthodox faith in word or deed. We pray for them and call on them to repent and return to the Lord.

So, in all of this is the gauntlet thrown down. The Episcopal Church and the Anglican Church of Canada are “compromised and enfeebled,” “proclaiming this false gospel.” “The unchangeable standard of Christian marriage between one man and one woman” is, in the Jerusalem Declaration, elevated to equity with Scripture, Creeds, the threefold ministry, and the historical Anglican Formularies.

All of this, then, justifies not only “the planting of new churches among unreached peoples [but] also committed action to restore authentic Christianity to compromised churches;” for “we reject the authority of those churches and leaders who have denied the orthodox faith in word or deed.” So, incursions across provincial lines are valid responses to the failures of American and Canadian bishops (and surely others soon enough) to “uphold orthodox faith and practice.”

Well, we in the Episcopal Church and the Anglican Church of Canada have some sense of having experienced this before. The Global Anglican Future Statement and the Jerusalem Declaration are remarkably reminiscent of the Affirmation of St. Louis, in intent and consequence, if not literally in language. The Affirmation of St. Louis has been the distinctive formative statement of “continuing Anglican” bodies in North America, including some who are now part of the Common Cause movement.

And having seen it before, we can predict what it will mean, at least here. It will provide justification for those who chose to leave the Episcopal Church, and especially those who have left in all but name long ago and now find a new body more congenial. Some will leave, if not nearly as many as the separatists hope. New bodies will coalesce and splinter and coalesce again over time, until new bodies reach some level of stability. They are not likely, however, to ever grow dramatically from what they are now.

There are differences, of course. The connections with foreign bishops will add a certain panache, at least for a while. However, such connections will not make the new bodies more attractive than they already were for their doctrinal positions; and time will tell just how ready American and Canadian Christians are to live with very different models of authority from other cultures.

In any case, and once again, the gauntlet is thrown down. This new movement, led by its primates, exists to challenge the existing relationships and structures of the Anglican Communion, from Canterbury on out. While it begins its work with the Episcopal Church and the Anglican Church of Canada, it can hardly stop there. It can only come soon to the British Isles; and one wonders what the approach will be to other conservative Anglican provinces that choose to remain with Canterbury instead of joining the movement.

It seems a long time ago that I described Archbishop Williams’ efforts to maintain the Communion as “cowboy poker,” won by those who stayed longest at the table (here and here). Well, clearly some have made a decision. They have attended GAFCON, and have disparaged the Lambeth Conference that they will not attend. They have determined that some are acceptable and some are not, and have stated their standards. Some will certainly back away from this; but just as certainly some will chart their course by this map. Are you watching, Archbishop Williams? These have chosen to walk away.

We Have Been Here Before: an Update

I wanted to update you on one of the cases I cited recently in reflecting again on care in extremis.

This past Tuesday, Sam Golubchuk died in the Intensive Care Unit of Grace Hospital in Winnipeg, Manitoba. I had cited Mr. Golubchuk’s case because of a difference in goals between his family and his physicians. The case gained attention initially when one of his physicians resigned his privileges in the hospital rather than continue to provide care for Mr. Golubchuk that the physician considered futile and unethical. Since that resignation, two other physicians also resigned their privileges for the same reason. While the hospital was able to work with other physicians to keep the ICU unit open, there was concern that more resignations by physicians, or resignations by nurses, might force closure of the unit, and disrupt care for all ICU patients, including Mr. Golubchuk.

In the end, it did not come to that. Mr. Golubchuk died while still receiving therapeutic care. (I have come to call that a celestial discharge.)

This satisfied his family. They felt Mr. Golubchuk’s Orthodox Jewish faith required continued therapeutic care unless and until he died. They went to court, and were successful in getting an injunction so as to continue care until the court could review the case. His death has made the legal issue moot.

However, it hasn’t made the ethical issues moot. Again, what are appropriate goals when best medical advice is that further care is futile? What in such cases are the limits of the autonomy of the patient, exercised by the patient’s surrogates? What are the limits of the autonomy of the professionals? How should a patient’s religious values be respected? What are the rights of other patients who might be affected by these decisions?

Mr. Golubchuk rests with his ancestors. His family feels they have fulfilled the requirements of his and his family’s faith. This is well and good. On the other hand, we in health care can’t yet rest. We still have a lot of thinking and conversing to do to determine how we might act in similar cases in the future.

Friday, June 27, 2008

More Good Listening for Chaplains

I’ve been listening to the radio again, and I’ve heard something that I think worth sharing.

I was listening to Fresh Air with Terry Gross this past Wednesday, June 25; or at least it’s what I had on in the background. In the midst of it, I heard Terry ask her guest, “I think your father was an Episcopal minister, wasn’t he?” With that, I started to pay more attention. I determined it was worth hearing again – something pretty easy if you have enough NPR stations in your “Favorites” or “Bookmarks” folder – and when I listened again, I thought it worth sharing here.

Jill Bolte Taylor, a Ph.D. neuroanatomist, has spent her career in researching brain functioning. In 1996 she became her own subject when she experienced a bleed affecting the left hemisphere of her brain. In her new book, My Stroke of Insight, she has described her experience of her stroke and her rehabilitation.

While I am sure the book will be worth reading, the interview itself is worth the time to listen, especially for chaplains. Let me share some of her statements that struck me as particularly interesting.

She spoke, for example, of her experience of those who visited her, and especially of those whose visits she felt helpful.

We’re in a society where, [if] someone is ill, we want to go visit them. There were two types of people in the world. There were people who brought me energy and people who took energy away from me…. If someone came in, they came in for maybe five minutes, they brought me love, there was no drama trauma, there was no “O woe is Jill.” There was only, ‘Oh, you are Jill, you’re going to be okay’…. There was only positive energy.

We wrestle in the profession, and especially in clinical training, with the question of what makes a “good visit.” We are to some extent trained that we haven’t done our job if we haven’t really dug into issues. For this patient that was not the case.

Dr. Taylor was asked by Terry whether she felt any “religious connection to what you’ve experienced?”

I do think my experience of that right-hemisphere bliss is what other populations would describe as a spiritual experience; and I think we’re wired to have spirituality. I think that’s why so many of us have an experience of spirituality. To me, religion is the story that different people tell themselves; because, you know, ultimately, whether your Christian-based or your Buddhist-based or whatever your choice of religion is, there’s a story that you tell yourself that gets you, allows you to quite your mind, whether it’s through mantra or prayer, to quite that left hemisphere language center in order for you to be able to feel that you are in relationship with something that is greater than you are as a single individual. So, I do think all religions are the left hemisphere story that helps us get into the right hemisphere experience.

As we seek to provide support at the bedside, I think chaplains do indeed value the patient’s faith story. We seek some commonality, something basically human, among the varying faith stories we hear. Dr. Taylor provides us her perspective on that.

A part of Dr. Taylor’s story, and no small part of her interest in the brain, is her brother’s experience of schizophrenia. In the interview Dr. Taylor spoke of what she had learned as a patient that is relevant to understanding mental illness.

I do think that I have a better understanding about how someone’s perception of reality can be so different from mine. You know, before it’s “You know, you walk like me and you talk like me, you’ve got to think like me,’ but I’ve really discovered that that is not true. The other insight that I’ve been given is how our society treats someone who is not totally cognitively connected to their reality; and it can be very hurtful. It can be a discriminating painfulness that makes somebody want to withdraw.

Asked what questions she had heard from families of other victims of stroke, she returned to her own experience as a patient.

You know, I think it’s really important that those of us who have left hemispheres, who would project drama and trauma onto the experience of stroke, we project our own fears onto the experience that this person is having; and that person may not be having as terrible a time as we’re projecting onto them. I think it’s very important that we love them, we come to them with love and celebration and gratitude for what they still have, and we focus on the ability instead of the disability, so they can feel that love and they don’t feel that they are less than, or viewed as less than they used to be before. So, to me it’s kind of approaching it with more of an open heart and an open mind, and being very cautious of what of our own fears are we projecting onto that person, when that may not be their reality.

That sense of projection is certainly an issue for chaplains, and for all in health care. Family and friends aren’t the only ones who project their own fears on the patient. We, too, are all too prone to do that. We need to be attentive to the patient as he or she is, and to base our care on what the patient experiences instead of what we fear experiencing.

And what about those whose experience of stroke is significantly different from hers? She recognizes that many do have a different experience, one that does not include the euphoria she herself experienced.

I’ve had individuals who have told me, “You know, I struggle now. I used to be very prayerful, and now I can’t find that big picture, I can’t find that experience that there is something greater than I am. And to these individuals I come right back to the most important message of my whole journey is our human brain is resilient. It is designed to heal itself. I firmly believe it. And you can try to reteach new cells in order to feel that again, and in order to create new function where you have had cells that have been lost.

In clinical chaplaincy we have long seen our work beginning with “exegeting the living human document.” We practice it in our verbatims, and many programs have supplemented that with interviews with patients. We learned that phrase, and see our profession founded, by Anton Boisen, whose autobiography Out of the Depths describes his own recovery from mental illness. Like Boisen, Dr. Taylor has analyzed her own experience as a “living human document.” She has shared with us something of her experience as a patient. I’m sure many will appreciate her book. In the meantime, I think this interview is well worth a listen.

Tuesday, June 24, 2008

Clean, not Unclean

Long ago in a hospital far, far away....

It was 1989. I was preparing to enter a hospital room, to support and care for the family of a young man who had died. The parents were at the bedside, focused on their child. The nurse stopped me at the door, clearly agitated. “Be careful not to touch him,” she said. “He has AIDS.”

I knew what he had, of course - would have known as soon as I saw him even if no one had told me. The purple lesions of Kaposi’s sarcoma were clear and plentiful on his skin. I touched both parents to comfort them; and then I placed my bare hand on the young man’s forehead to bless him and commend him to God.

I think of that story frequently enough, and regularly under some circumstances. One of those regular times is my annual visit to Employee Health.

The visit itself is simple enough, and simpler than it used to be. It once meant the annual tuberculosis (TB) test, the small, inordinately painful injection just under the surface of skin. Now that annual testing is no longer recommended (new associates are still tested – indeed, tested twice – but the annual test is no longer recommended), it’s a simple questionnaire to be sure I haven’t been exposed to anyone with TB, whether by patient contact or foreign travel. And there is, of course, the annual “fit test.”

Or at least there is for most people. For most people there is a check to see that an appropriate mask will fit securely over nose and mouth and around the chin, again to protect against TB and other illnesses, like flu, that can spread by spraying droplets from coughing or sneezing. For me, the Employee Health nurse and I simply laugh. Why? Take a look at my picture. The beard prevents any form-fitting mask from sealing completely. I have been tested at times over the past twenty years or so, and the results have always been the same. “Can you smell the test sample?” Yes, of course. Yes, always. I don’t even have that sensitive a sense of smell, but I always smell the test sample. So, there’s no point in the annual review in me actually putting on the mask to see.

There is an alternative. Every few years they come up with an improved sort of mask, and for a while each is suggested as the appropriate choice for someone like me. Now the appropriate choice is, in its way, the definitive answer. It’s a device with a full hood. The hood is attached to a pump and a filter to provide air. The pump and filter fit on a belt, and are about the size of, if a little heavier than, a fanny pack. I had to participate in a class to learn to use the thing. The full hood and the filter should protect me from about anything that might be floating in the air around me and a patient.

And this is where I come back to the story of the patient so long ago, the young man who died of AIDS. By the time I walked into that room we had been living with AIDS as a society for nine years or so. I knew the history and the acronyms that had changed with each new piece of information: “the Haitian disease” and “GRID” and AIDS and HIV. I also knew how difficult it actually was to transmit, and the importance of good hand washing – something, sadly, the nurse in question had apparently forgotten.

I had also heard over those early years the sad stories of how fear had separated those living with AIDS from those who cared for them. “Will no one touch me? Why won’t they touch me?” I never wanted a patient to feel I wouldn’t touch, unless there were real risks. More to the point, I never wanted a patient to fear that since I might not want to touch it meant God did not want to touch. I continue to feel that concern; and so, while I wash my hands frequently and use alcohol-based sanitizer even more, I tend to do it as I leave the room, after I’ve touched the patient, and not before, as I enter. I do it before, certainly; but before I enter the room, outside the patient’s presence.

What, then, should I do about that hood? Notwithstanding my joke over the years about my beard as my own organic air filter, I know that a mask intended to fit only from nose to chin will never provide a complete seal or complete protection. On the other hand, being smaller and used more commonly by others caring for the patient, I think it separates me from the patient much less than what looks for all intents and purposes like part of a hazmat suit. Will the patient notice? Perhaps not; but it seems to me a mask suggests I know the person is ill, while the power-assisted hood suggests I think the patient is non-human.

So, so far I use the standard masks, knowing they’re not perfect. I wash my hands, and even gown and glove if necessary; because if I convey the wrong contaminant into or out of the room I put at risk more people than just me. But I do my best to set as few barriers between me and the patient as are necessary for safety and dignity. It might not be a concern of any given patient; but I don’t want a patient to think I won’t touch because I am afraid. And I don’t want a patient to think that I won’t touch because I think God won’t touch.

Sunday, June 22, 2008

Family Values: Reflections on Proper 6, Year A (RCL)

I preached in a local parish this Sunday, the Sixth after Pentecost. I was discussing the lessons for the Sunday with some colleagues. We noted especially the Genesis lesson, in which Hagar and Ishmael are cast out into the wilderness; and the Matthew lesson, in which Jesus said that believers would find their enemies in their own household. My immediate reaction was, “I’ve got to preach on family values!”

This will be a big year for discussion of “family values.” Politicians in this election year will speak often of “family values;” and religious “politicians,” clergy and church leaders who want to sway their listeners, will refine that to speak of “Biblical family values.” We can expect to hear those words this year as much as ever, if not more.

The problem, of course, is that “family values” and “Biblical family values” are catch phrases, rhetorical short hand phrases for a particular understanding of how folks should live. They point to a set of morals, justified by citations from Scripture, that those who recite the phrases want to endorse, and want the rest of us to follow. They promise a peaceful and happy life for those families that follow them.

And, of course, we know the problems with those catch phrases. They raise more questions than they answer, being based on assumptions that are questionable. We know the questions. For example, whose values? We are appalled when we hear of “family honor killings” in some parts of the world (although such events are hardly unknown here); but in their context they are part of normative family values. We’ve paid a lot of attention recently on issues of polygamy in these United States, as we’ve paid attention to issues of polygamy in some provinces of the Anglican Communion. The difficult thing is that polygamy is an accepted part of family values in some places in the world, and was once in a specific time and place in America.

Which leads us to the next question: who is a family? We are more and more attentive to one-parent families and to blended families. We’re even getting more honest about and more accepting (even if we still have some way to go) of families with two mommies or two daddies. Some of us remember living in the midst of extended families, with more than one family nucleus and more than one generation living in the same town, in and out of one another’s homes.

And then there are those troublesome citations from Scripture – like the lessons today. Take, for example, the story from Genesis. Abraham had a problem in his family. In the face of her barrenness, Sarah had offered Abraham her slave Hagar as a concubine. It was an appropriate offer, at least according to the family values of their culture, to prevent a worse event: the failure of a male heir. But, then, by God’s grace Sarah bore a son; and suddenly Sarah wanted no threat to Isaac’s inheritance. “Get that boy away from my son, and get his mother out of my house!” Sarah demanded. And Hagar found herself sent out into the wilderness with a few days’ bread and one skin of water. The vision of God that had comforted Abraham had not been shared with her. It is true that this accorded with God’s plan, and that God made of Ishmael his own people, also faithful to the one God; but one would hardly hold up any of these events as part of a model for us to follow in our families.

And then there was the Gospel lesson. Jesus takes on quite bluntly any image of peace in the family:

"For I have come to set a man against his father, and a daughter against her mother, and a daughter-in-law against her mother-in-law; and one's foes will be members of one's own household.

"Whoever loves father or mother more than me is not worthy of me; and whoever loves son or daughter more than me is not worthy of me; and whoever does not take up the cross and follow me is not worthy of me. Those who find their life will lose it, and those who lose their life for my sake will find it."

This hardly seems to relate to the images conjured or intended by those who speak of “family values,” much less “Biblical family values.” And yet we know empirically that this happens. If each baptized Christian has within the Holy Spirit to lead, and if each is led to a different and individual vocation, it’s virtually inevitable that we might differ even with those closest to us about how to follow Christ.

So, when we hear the phrases “family values” and “Biblical family values,” we need at least to be very attentive and thoughtful, if not entirely suspicious.

Which is not to say that there are no values in Scripture to guide us in families. They’re certainly there. They’re just not laid out as “family values.” Instead, they are the values of the Kingdom. Remember not too many weeks ago, when we were called to seek first the Kingdom, trusting that in that we would also receive all else that we needed? S, if we seek to live out the values of the Kingdom, I think our families will benefit. If we love our neighbors as ourselves – and not forget that our family members are also part of the neighborhood – our families will benefit. If we forgive as we have been forgiven, even up to seventy times seven – including those who can be most grating to us because they are closest to us – our families will benefit. If we seek to be like our Master, if we seek to shoe the sacrificial love of Christ to those around us – including those on the other side of the breakfast table, or the other side of the bed – our families will benefit.

And isn’t that a major part of our difficulties in family life: that those closest to us, those we should love most, are not those we think of first when we think of object of our Christian charity? We have all known folks who were “so heavenly minded as to be no earthly good.” They are devoted to the service of the Church and the care of the poor; and the emotional and spiritual needs – and sometimes the physical needs – of their families suffer.

So, in this season when we will hear so much about “family values” and “Biblical family values,” I think we should take a different approach. If we seek first the Kingdom, and live out those values in all our relationships, our families will benefit, and we will benefit in them; and the rest of the world will see in our families, as in all our relationships, just what our values really are.

Wednesday, June 18, 2008

Returning to Those Hard Conversations

Some years ago a nurse of my acquaintance asked me the following riddle:

Q: Why to they screw down the casket lids when a patient dies of cancer?
A: To stop the oncologist from saying, “Wait – there’s one more thing that we might try.”

Of course, the joke isn’t fair to oncologists, is it...?

What brought that to mind was this article I found in the “In the News” list on the website of the Center for Practical Bioethics. The story relates to a paper presented at the recent 2008 Annual Meeting of the American Society of Clinical Oncology (ASCO). The paper described results of a research study looking at patients whose physicians had offered end of life (EOL) discussions, with clear information about the patient’s prognosis and all treatment options, including palliative care and hospice. Perhaps we should speak here of two papers, because two papers were presented that, from the abstracts, were clearly related but different results of a single research study. The papers were, “Associations between advanced cancer patients' end-of-life conversations and cost experiences in the final week of life” (B. Zhang et al; abstract here) and “Medical care and emotional distress associated with advanced cancer patients' end-of-life discussions with their physicians” (A. A. Wright et al; abstract here).

According to both abstracts, “Coping with Cancer is an NCI/NIMH-funded, prospective, longitudinal, multi-institutional study of 603 advanced cancer patients. Patients were interviewed at baseline and followed through death…. 188 of 603 patients (31.2%) reported EOL [end-of-life] discussions with physicians at baseline.” At the time the information for these papers was collected 323 had died, including 148 whose doctors had offered EOL conversations. Charts of all 323 were reviewed, and those of patients who had had EOL conversations were compared with the charts of those who hadn’t.

In important ways there were no significant differences between the 148 and the other patients who had died: they “did not differ in socio-demographic characteristics, psychological measures, treatment preferences, attitudes toward doctors or terminal illness acknowledgement.” (Zhang) At the same time, the costs for the patients who had had EOL discussions were 30% less in the last week of life. This was the result of different decisions. “They were more likely to acknowledge being terminally ill, value comfort care over life extension and complete a DNR order. [Also,] patients reporting EOL conversations were less likely to undergo ventilation or ICU admission and more likely to receive hospice.” (Wright)

So, why would only one third of the patients have an EOL discussion with their physicians? “Physicians are concerned that end-of-life (EOL) discussions may distress terminally ill patients, and may not offer benefit.” (Wright) There is the fear, sometimes articulated, that giving patients bad news, however accurate, might lead the patient to “give up.” However, that isn’t borne out by this study. Patients who had EOL discussions were not in fact more likely to be depressed or anxious. (Wright) Again, they “did not differ in… psychological measures….” (Zhang) They were, however, more informed about their prognoses, and more likely to make decisions that were reasonable in light of those prognoses, and especially “to value comfort care over life extension.”

The news article seemed to me to express surprise that so few of the patients in the study had had end-of-life discussions with their physicians. For me, and I expect for anyone experienced with patients approaching the end of life, the response was, “Well, duh!” It is axiomatic that all too often patients are not informed about hospice services until they’re too debilitated to really benefit from them. The critical criterion for admission to hospice is a medical prognosis that the patient will live less than six months. My colleagues, chaplains in hospice, still speak of how often patients are admitted to hospice so late that they live perhaps six days, because the oncologist waited so long to have the end of life conversation. A document available from the Center for Medicare Services (CMS) notes that

The average length of stay has been steadily increasing. However, the long lengths of stay are becoming longer. For example, in 2005, Mississippi, Alabama, and Oklahoma had an average length of stay of 122, 113 and 108 respectively, while the national average was 67 days.

That is, for patients told they have an expectation of living six months or less (180 days), the average length of stay was only about a third that. But, let’s also note that 67 days is the average. If “long lengths of stay are becoming longer,” we need to recognize just how many patients have much shorter lengths of stay so that the average is not higher.

So, this continues to be a problem. Even as we seek to develop better techniques and programs for palliative care, physicians are still not clear with their patients that a time comes when medicine has nothing more to offer for therapeutic benefit (again, as opposed to palliative benefit) – probably because the physicians are not being clear with themselves. I have certainly encountered physicians for whom their work was a battle with the disease. These physicians are, of course, determined and almost single minded in this battle (and, after all, those are the very characteristics that helped them survive medical school and residency). Unfortunately, they become analogous to the person of faith who “is so heavenly-minded as to be no earthly good.” They focus so completely on the disease that they lose track of the person who’s suffering from it. This is not to say that they don’t care; they care passionately. They simply conflate and confuse doing their worst to the disease with doing their best for the patient; and those goals aren’t always the same.

I commend these abstracts to your attention, as well as a number of other abstracts on similar subjects from the ASCO Annual Conference. It gives me some hope that more physicians will note them; for, if it’s axiomatic for non-physicians that these end-of-life discussions have great value, it’s also axiomatic physicians will take these things more seriously if they hear them from other physicians than if they hear them from the rest of us. With these and other continuing studies, we will eventually help physicians see that these end of life discussions, however difficult, are best for their patients; and what is best for patients is a goal we all share.

Monday, June 16, 2008

The Voice of a Friend

I'm adding today another blog to my list of blogs writing about chaplaincy. Clair Hochstetler has been a valued colleague for years now. We have both been members of the One Person Department Special Interest Group in the Association of Professional Chaplains (APC). We've also been part of a One Person Department group in Yahoo Groups.

Clair and his wife have taken on a new adventure. They have moved to Australia, where Clair will be serving in Canberra Hospital under the auspices of Baptist Chaplaincy Services and Canberra Baptist Church.

I had written to him before he left to share his experiences on a blog, and to let us all share in his discoveries of life and chaplaincy in Oz. Now, he's up and writing. Check out his experiences at The Hoosier Oz! I know I'll be checking in regularly.

Tuesday, June 10, 2008

Looking Again at the Massachusetts Experiment

Two years ago in one of my early posts, I wrote about the Massachusetts Health Plan. The Massachusetts plan was an effort to expand access to health care and reduce the number of uninsured and underinsured residents. The plan used a combination of government programs, incentives for companies and individuals to purchase health insurance, and penalties to enroll as many as possible in public or private health insurance programs. At the time, everyone was intrigued. However, everyone also knew this was an experiment, and, like all experiments, it would take time to learn whether this really worked.

Well, we now have some indication. A study of the Massachusetts plan has been published on the web site of Health Affairs. The report, “On The Road To Universal Coverage: Impacts Of Reform In Massachusetts At One Year,” was authored by Sharon K. Long, a Research Associate at the Urban Institute. (You can also read news reports on the study here and here.) The study is based on two telephone surveys, one taken just before the plan was implemented and the second one year after initial implementation. Each survey reached had results from approximately 3,000 households. While the report offers interesting details, you can gain a lot in this quote from the abstract:

In roughly the first year under reform, uninsurance among working-age adults was reduced by almost half among those surveyed, dropping from 13 percent in fall 2006 to 7 percent in fall 2007. At the same time, access to care improved, and the share of adults with high out-of-pocket costs and problems paying medical bills dropped. Despite higher-than-anticipated costs, most residents of the state continued to support reform.

Some specific points from the report:

The percentage of all those contacted who had no insurance dropped in one year from 13% to 7.1%. More specifically, those who had been uninsured at some time in the year previous to each survey dropped more than 4% (from 18.8 to 14.5).

There had also been concerns that there would be an effect of public programs crowding out employer based programs, either because employers would choose not to offer health plans to their employees, or because the employees would choose not to take the plans offered, in favor of government-supported plans. It appears the effect did not occur: “The share of adults overall and the share of working adults who reported that they had a coverage offer through their employer remained stable between fall 2006 and fall 2007.” It also appears that more families could identify a primary care provider, and that there was no increase in use of Emergency Rooms for nonemergency needs. The program did cost the state more than originally expected. This may be because there were more uninsured individuals than expected to incorporate into the program.

There is much more to note from this study, and from a related article, also in Health Affairs, titled "Massachusetts Health Reform Implementation: Major Progress And Future Challenges.” This article goes into more detail about implementation of the various parts of the program.

In this election year, in which access to health care is already a major issue, it is worthwhile to look at the Massachusetts experiment, as well as at similar programs in California and Pennsylvania. While one or two years isn’t a long track record, it can give some indication whether these programs are meeting individual and social needs. With that information, we can be more clear what we expect from those we elect, not only as President, but also in all the Congressional races.

Monday, June 09, 2008

We've Been Here Before

Care in extremis continues to be a challenge, especially when good people disagree about the patient's best interest. Two current cases that highlight the problem have come to my attention.

The first is this case from Florida. A woman has been between the hospital and a nursing home since suffering a stroke in December. Her husband believes that she is not aware and will not recover, and that she wouldn't want to live this way. He thinks her feeding tube should be removed. The patient's mother, however, believes the patient is aware and can recover (or at least recover enough). She wants the feeding tube retained. One good thing is that so far husband and mother-in-law are still cordial. A court has appointed an attorney for the patient, but so far no other third parties are involved. (Of course, it's only been a few months, and this is Florida....)

The second case is from Winnipeg. An 84 year old gentleman has been in intensive care and on life support since October. The patient is an Orthodox Jew, and his family feels everything must be done. Physicians feel care is futile. In fact, one doctor feels so strongly that he has resigned - and not just from the case, but from the hospital.

The case has gone to court, although a trial date has not been set. The hospital is coping with the loss of one intensivist, but worrying that there may be more resignations, forcing closure of the ICU. Staff feel continuing care is cruel, and want the case resolved as soon as possible. The family feels faith requires continuing care, and want the trial delayed, at least past the High Holy Days, to be sure representatives of their Orthodox community can participate.

It the Florida case sounds all too familiar, you're not alone. There are enough parallels to the Terry Schiavo case to catch everyone's attention. Although the case hasn’t gone on nearly as long, it is another case in which the patient’s husband and the patient’s parent differ in their beliefs about the patient’s awareness, prognosis, and wishes. There are also parallels between the Winnipeg case and the Schiavo case, if different ones. As in the Schiavo case, there is significant difference between the diagnosis and prognosis presented by physicians, and the family’s assessment and prognosis. In addition, the patient’s religious faith, and appropriate medical care in light of the patient’s faith, are central issues shaping the family’s decisions. And, as in the Schiavo case, this is in the courts.

I don’t raise the similarity with the Schiavo case as if to say, “See, these cases are popping up all over.” I think the fact that they’re news is in fact evidence that they’re not common, largely because in most circumstances the professionals and families can come to consensus about what the patient would wish. Neither to I want to suggest that somehow the notoriety of the Schiavo case would have brought massive change. It did result, at least in my area, in a lot of new Health Care Directives and Durable Powers of Attorney for Health Care; but I didn’t expect any single case to result in radical change in the culture.

I raise it because they do have common themes that need continued and constant attention. We could even articulate those themes again in the categories of the Georgetown Mantra.

Autonomy: Who knows what the patient would want, and can best speak for the patient who can’t speak for himself or herself? Who is the most appropriate surrogate?

Beneficence: What is in the patient’s best interest? Who is best able to determine the patient’s best interest?

Non-maleficence: Is there a point beyond which aggressive care is harmful to the patient, whether to the patient’s physical integrity, or to the patient’s dignity? Are there circumstances in which aggressive care results in harm?

Justice: How does this affect others (by, in this instance, the risk - perhaps small, but real - that an ICU would have to be closed)? What is appropriate participation from the wider community (such as the courts, or the faith community)? What respect is due to the moral integrity of providers, whether professionals or institutions?

The most important circumstance shared by this Florida case, the Winnipeg case, and the Schiavo case, is their complexity. All these cases, however simple and straightforward each might seem from one party’s perspective, in fact become complex as those parties and interests interact. It remains difficult to reach resolution; and more difficult, if not impossible, to reach reconciliation.

And in the meantime, while many speak for them and about them, the patients remain....

Thursday, June 05, 2008

Seeing Into Hearts and Minds of Chaplains

PlainViews is an online journal devoted to chaplaincy. I think it's a fine and important journal, valuable enough that it's over on your left, in my permanent links.

And sometimes there's a particular article I think worth calling to everyone's attention. Actually, today there are two. The first is "Bad Death," byRev. Kirk M. Ruehl, a chaplain with Hospice at the Chaplaincy in Kennewick, Washington. He writes, both in poetry and prose, about the idea of the "bad death" (as opposed, as you'll understand, to the "good death"). His article is moving and thought-provoking.

Which brings us to the second article. It's "Bad Death – Responses." A number of chaplains write back in response to Chaplain Ruehl's article with their own thoughts. They are also moving and thought-provoking, and can give you a sense of the breadth, depth, and sensitivity among my colleagues in this ministry.

Take the time to read these two posts at PlainViews. They can give you some glimpses, brief but brilliant, into the hearts and minds of chaplains as they care for those who die and those they leave behind.

Now That the Shouting's Died Down a Little...

perhaps we can get to the important next step.

Senator Obama will be the nominee of the Democratic Party for President of the United States. However, our government needs two branches working together to get laws passed or changed. We need both the White House and Congress together to make progress.

We've seen that illustrated over the past couple of years. We have a Democratic majority in both houses of Congress; but there have been complaints from progressive supporters that they haven't gotten much done. Well, surprise! If a Republican president isn't interested in signing legislation from Congress, it doesn't get completed, no matter how much support there is from the public. If a Republican minority in the Senate is large enough to sustain a filibuster, legislation doesn't get completed, no matter how much support there is. If we really want change, we need a new President from the Democratic Party, and a larger majority of the Democratic Party in both Houses of Congress; and specifically in the Senate a majority that can cut off a filibuster (more than 60).

That's not to say that in principle any of these things are bad. The President is a Constitutional check on the actions of Congress. The capacity of Congress to override a veto is a Constitutional check on the actions of the President. (I could add in interrelationships with the Supreme Court; but that's for a a post less focused on our votes.) A filibuster in the Senate may be a necessary challenge to a possible tyranny of the majority.

So, it's not that the rules are bad. It's not, at least in principle, that the people are bad (I can't speak much beyond principle, because I don't know them personally). So, if we want change, it's our responsibility.

Yes, ours: we're the voters. We're "the people" in this government "of the people, by the people, and for the people." We need to vote, and we need to vote thinking about what will benefit not only ourselves as individuals but all of our neighbors as well.

So, now that the candidates for President are determined, we need to focus on the other part of governing: candidates for Congress. Start paying attention to candidates for Congress, and vote so as to have a Congress that can work with the new President to accomplish the changes we want to see.

Tuesday, June 03, 2008

Back to St. Andrew's Elsewhere: My Newest at Episcopal Cafe

You can read here my newest piece at Episcopal Cafe. It's part of a series this week on the Daily Episcopalian discussing the St. Andrew's draft of an Anglican Covenant. Each day there will be another piece, each written by a Deputy to General Convention, discussing some part of the St. Andrew's Draft. Take the time this week to read through them. The Covenant process will be an important topic of conversation at this summer's Lambeth Conference. We can certainly expect it will also be a topic of conversation next summer at General Convention.