The newest edition of Grand Rounds, the carnival of medical/health care blogs, is up here, and my post is part of it. As always, I'm honored by the company I find myself in.
The Rural Doctor is hosting today, and has organized posts according to Shakespeare's "Seven Ages of Man." It's an interesting approach. Scroll through the seven ages to find another good collection of posts. I know there will be more than one you find interesting.
What I remember best is her eyes as she was rolled away - so sad, so hopeless. I remember, too, how sad and powerless we felt, we who watched her go.
It was in the early '90's. I met the patient at her bedside. She was in a difficult situation: she couldn't breathe, at least not on her own. She was alert and oriented - she was all there - but she was in respiratory failure. Without the mechanical ventilator she would die.
She understood this quite well, really. She was a Registered Nurse with years of experience. She understood how sick she was. She understood what the doctors told her about her treatment and her prognosis.
All of which made it particularly important to us who cared for her when she said, "I want to stop." She tried first to say it, moving lips the rest of us tried to read. Once we thought we understood, we had her write it, holding a clipboard for her. "I don't want to live like this. I want to turn my vent off."
At the time, we in healthcare were wrestling with patient autonomy with an intensity I think we've since forgotten. Living Wills were relatively new, and uncommon. The Patient Self-determination Act was new, too, so legal standing for these documents was little understood.
Still, we wanted to follow her wishes. I don't recall anyone on staff who was arguing against doing so. Several of us talked to her, "just to be sure;" but once we were sure of her wishes and her prognosis, we were ready to do as she wished. If, after all, we are to respect the patient's autonomy, we need to respect is especially when they make decisions that we disagree or are uncomfortable with.
Which is where matters stood until the patient's daughters arrived. The daughters lived out of state; and while they loved their mother, the patient's choice of where to live and work had made it very difficult for them to be directly involved with her during her illness. When they did arrive, and learn of her decision, they were, not surprisingly, distraught.
We didn't know exactlty why they were so shocked and so resistant. There are issues that come to mind in such circumstances: guilt at lack of involvement with this illness, or for some past event that injured the relationship; differences that had grown up over the years over moral values; or even on occasion financial concerns. Often enough the parent has been distant so as to maintain independence - sometimes justified because "I don't want to be a burden to my children." As I recall, the differences of moral issues were most clearly expressed; but mostly they spoke of their shock and grief that their mother would make such a decision.
But, they were clear who had made the decision, and so they began to appeal to her. They were loud and clear and persistent. They were pleading, they said, for her life, and for the opportunity for time with her. They were her daughters. How could a mother deny them?
And in the end, she didn’t deny them. She changed her mind. Against her own sense of her quality of life, against her own sense of her values, she changed her mind. I will admit that when I think of this, my initial thought is, “She caved;” but that may perhaps be too harsh. Certainly, she acquiesced, and she made her decision, I think, less on the strength of their arguments than on the intensity of their emotions.
She changed her mind. Her daughters, with the help of social workers, found a facility to accept a transfer, a facility not far from where both of them lived. They arranged her transportation, a process made complex by her need to travel with the ventilator and the requisite professional support. They arranged it all to their satisfaction.
And not to hers. She still wanted to come off the vent, even at the cost of her life. But she had made her decision to accommodate her daughters, to continue to live with her limitations, to allow them to try to provide support and care. She had made her decision, and would live with it - literally.
Still, I remember her eyes when she left. I was there when the team arrived, and there as they went through the complicated process of disconnecting here and reconnecting there to make the transfer possible. Her daughters were there, somehow both anxious and hopeful, and happy with her decision. But she was not happy. I could see it in her eyes.
For a long time now I have been teaching about Advance Directives, the documents that might allow us to die according to our own values. I have spoken of the instructions one might put in a Health Care Treatment Directive, and of the agents one might choose to list on a Durable Power of Attorney for Health Care. I have emphasized having those documents where someone could get hold of them at 3:00 a.m. on a Sunday morning.
But what I have come to emphasize as the first step is to have the hard discussion. It is so important to discuss these concerns with those we love most, with those who will be with us in those difficult circumstances. It is important, not just to tell others what we want, but also to learn what they are willing and able to do. That may make things difficult. It may even cause disagreements on the one hand, or accommodation on the other. But it needs to happen first. It needs to happen before the documents are done, and certainly before the sickness unto death. For most of us, it is the hardest step; but for all of us it needs to be the first.
We need for those we love to know what we want, and we need to know what they can do, and we need to know before the crisis comes. I know how important that is. I can still see it in her eyes....
One of the facts of my life is that I attend a lot of meetings. Most of the time most everyone in the room knows everyone else; but sometimes that’s not the case. So occasionally we go around the room introducing ourselves and saying something about our position.
The thing is, everyone in the room knows my position. Certainly, all employees to: I have my own portion of Orientation to speak about spiritual care in our hospital. But, even those who aren’t employees have some idea. I wear clericals when I work, and so everyone in the meeting has some idea of my title.
With that in mind, I decided some years ago that I wanted to come up with some title more interesting, or at least more fun, to share. I’ve introduced myself as being responsible for celestial engineering, or for metaphysical rehabilitation. However, most often I’ve introduced myself as “the owner’s rep.”
There is some logic to that. Mine is an Episcopal hospital in an Episcopal health care system. My bishop is Chair of the Board of our central hospital, and serves on the Board of the health system. He cannot attend the meeting of the Board of every institution in the system, including mine. So, I made the argument some time ago that I should attend our Board meetings on his behalf, representing him and the diocese.
And, blessedly, our leadership and staff are aware that this is an Episcopal hospital, in no small part because everyone sees me in orientation. They hear regularly, too, that the leadership of the system takes seriously that we are faith-based. So when I introduce myself as “owner’s rep,” I notice that folks laugh, but they listen.
What brought this to mind was the lessons heard not so long ago for the Fifth Sunday after Pentecost. Think, for example, about the story of Abraham. Three strangers came past his tent in the heat of the day. He offered them hospitality – shelter, food, and rest. That was, after all the custom; and for a nomadic herdsman like Abraham, strangers could mean both news and entertainment, stories of the world beyond daily experience.
At the same time, it became quite clear that these strangers were not your run-of-the-mill travelers. It became clear that they were at least owner’s reps. We may go back and forth as to whether they were messengers of God, or God himself; but we can be certain at least that they were owner’s reps. “Where is Sarah?” one said. “I’ll be back this time next year, and Sarah will have a baby on her lap!”
And Sarah laughed. She laughed, she said, uncertain how much to hope for such a blessing: “After all this time, will I really know that joy?” For, after all, those around her would have seen her barrenness not simply as sad but as cursed. And, indeed, she was embarrassed – embarrassed to have laughed and embarrassed to have hoped – so that when the stranger said, “Why did she laugh? Is anything too wonderful for God?” she denied it. But she did laugh, and knew she laughed; and when, within the next year, she indeed bore her son, she named him Isaac – “Laughter.” She laughed, but she listened; for he who spoke was clearly at least the owner’s rep.
In the same way, Jesus sent out the apostles; and when he did, he shared his authority. “Then Jesus summoned his twelve disciples and gave them authority over unclean spirits, to cast them out, and to cure every disease and every sickness.” They became the owner’s reps, sent out “to the lost children of Israel” to proclaim the presence of the Kingdom of the God they already knew. Jesus certainly prepared them for difficulty and for rejection; but he also prepared them for those who would listen, for those who would receive the apostles’ peace. And there were certainly those who did listen, listeners both human and non-human; for if Matthew does not share with us any results, the parallel telling of this episode in Luke does: the “returned with joy, saying, ‘Lord, in your name even the demons submit to us!’.” We can’t be sure whether they laughed, although surely some did; but we know they listened.
We, too, have been called to function as “owner’s reps.” We are, after all, members of the Body of Christ, called, like the Apostles, to continue carrying into the world the word that “the kingdom of heaven is at hand.” We are committed to it again and again in the Rite of Baptism. It’s all right there, especially the commitments tin the Baptismal Covenant, whether we were baptized with these words or simply repeat and affirm them at the Easter Vigil and when the Bishop visits and every time we witness someone else’s baptism. We say we will “continue in the apostles’ teaching and fellowship, in the breaking of bread, and in the prayers.” What could more directly connect us to this mission of the Apostles? We say we will, “proclaim by word and example the Good News of God in Christ.” That is, after all, what Jesus sent the Apostles to do. We embrace the mission when we pray God “Send them into the world in witness to your love.” The them is the baptized – which is to say that the them is us.
Of course, Jesus prepared the Apostles for a lot of resistance as they made their proclamation – resistance in the world, and especially resistance among those who would “hand [them] over to councils and flog [them] in their synagogues.” At the same time, he prepared them for those who would accept them, who would greet them in peace and receive the peace of the Apostles – the peace of Christ – in return.
By the same token, I know we can also expect resistance as we go out in our own time to proclaim the Gospel of Christ, to proclaim that the Kingdom is available now, and that there is peace for those who live in it. The world we live in, the time we live in, seems as little suited as any in history to peace of any sort, including the peace of Christ. It seems so focused on the daily pursuit of this fiscal and political economy as to preclude attention to any other kingdom. I am convicted, however, that if we live out our faith with authenticity, sharing the peace of Christ, others will hear in us the God whom we represent. They will see in us the acts and the authority that proclaim the presence of the Kingdom. They will receive through us the peace of Christ, and learn to share that peace with others.
All it takes is for us, by God’s grace and empowered by the Spirit, to carry out our mission: to proclaim the presence of God’s kingdom, and the love and peace that Christ offers to all who will live in it. If we will do that, they will recognize us, too, as the “owner’s reps;” and they may laugh, but they will listen.
My Best Beloved came home from church today (she had gone to her parish, and I had supplied elsewhere), and commented, “The words of worship need to make sense to the people worshipping.”
I answered, “That’s the primary argument for periodic revision of the Prayer Book.”
“Yes,” she said, “but you wouldn’t rewrite the Psalms.” I agreed that, while the translation for the 1979 Prayer Book was original for that book, the basic text would not change. “So,” she said, “much of the language just doesn’t make sense to us. I almost lost it when I heard in the Psalm,
'1 Oh, how good and pleasant it is, *
when brethren live together in unity!
2 It is like fine oil upon the head *
that runs down upon the beard,
3 Upon the beard of Aaron, *
and runs down upon the collar of his robe.'
A long time ago, when I was a young priest, I was heavily involved in working with youth. I was especially involved when the Diocese of West Tennessee separated from the Diocese of Tennessee.
At that time, there were a number of young people who had been active at the diocesan level, in a diocese that had encompassed the whole state. They felt closely connected to other kids across the diocese, sometimes more than to other kids in their own parishes. When the new diocese was formed, many of them felt things would go on as before. They wanted to share their new diocese, but they wanted to share it by inviting kids from across the state to events in the new diocese.
Several of us priests who were working with the kids talked among ourselves, and made a different decision. We instead cancelled events for a season, from the time General Convention approved the new diocese until after the first bishop had been elected. Essentially, we stopped things for the better part of an academic year. A number of the young people were furious, but we felt this was important. For the new youth community to form for the new diocese, the old had to end. There had to be a death of sorts so that there could be new life.
I have been contemplating the Lambeth Conference, and all that has been said and written. Two matters have hung with me. One has been the reports of bishops in other parts of the world telling our bishops that our decision for full participation of lesbian and gay Christians in the life of the Church, including both the election, confirmation, and ordination of Bishop Robinson and also seeking to acknowledge the capacity of same sex couples to demonstrate in their relationships the fruits of the Spirit, has brought sibling Anglicans into disrepute and sometimes to physical harm in their own cultures. We have often said in essence, “Surely we are not so important that anyone outside our own family will know or care.” We have despaired of the association in other parts of the world of American Episcopalians with the unpopular foreign policy decisions of the United States. The message we have heard from some places in the Communion is that, like it or not, people outside the family do notice and care, and do associate us with our elected officials, and Anglican siblings, not to mention Anglican mission, suffer.
The second matter has been discussion of “generosity” that would lead to “sacrifice.” These have been loaded words. The questions have been articulated clearly in a number of places: who should sacrifice; and what should they sacrifice? By the end of Lambeth, the central examples were the three moratoria, referenced back to the Windsor Report but repeated so often since: a moratorium on ordaining as bishops partnered homosexual clergy; a moratorium on blessing the commitments of same sex couples (whether formally or informally); and a moratorium on one bishop crossing into the diocese of another to “rescue” without consent of the diocesan. In one sense, each of these is an institutional decision. However, each also represents individual Christians, clergy and lay, seeking to make faithful decisions, and finding in one moratorium or another disparaging of their experience of life in Christ.
In many ways, this continues my reflection, published elsewhere, on the Archbishop of Canterbury’s Second Presidential Address. In it he raised the concept of generosity in seeking to understand two voices:
Two sets of feelings and perceptions, two appeals for generosity. For the first speaker, the cost of generosity may be accusation of compromise : you’ve been bought, you’ve been deceived by airy talk into tolerating unscriptural and unfaithful policies. For the second speaker, the cost of generosity may be accusations of sacrificing the needs of an oppressed group for the sake of a false or delusional unity, giving up a precious Anglican principle for the sake of a dangerous centralisation. But there is the challenge. If both were able to hear and to respond generously, perhaps we could have something more like a conversation of equals — even something more like a Church.
At the moment, we seem often to be threatening death to each other, not offering life. What some see as confused or reckless innovation in some provinces is felt as a body-blow to the integrity of mission and a matter of literal physical risk to Christians. The reaction to this is in turn felt as an annihilating judgement on a whole local church, undermining its legitimacy and pouring scorn on its witness. We need to speak life to each other; and that means change. I’ve made no secret of what I think that change should be — a Covenant that recognizes the need to grow towards each other (and also recognizes that not all may choose that way). I find it hard at present to see another way forward that would avoid further disintegration. But whatever your views on this, at least ask the question : ‘Having heard the other person, the other group, as fully and fairly as I can, what generous initiative can I take to break through into a new and transformed relation of communion in Christ?’
My newest piece is once again up at Episcopal Cafe. You can read it here. It is my reaction to Archbishop Rowan Williams' Second Presidential Address at Lambeth. I hope you'll take the time to read, and as you feel moved to respond.
And, once again, when you're at the Cafe, look around at the many other notable posts and news items. There's much to appreciate at the Cafe, and we hope many will do just that.
U. S. News and World Report noted yesterday an article in the Journal of General Internal Medicine on medical blogs. According to the U.S. News article, "The researchers analyzed the contents of 271 medical blogs and found that 56.8 percent contained enough information to reveal the author's identity.” Worse, “In some cases, patients described in medical blogs may be able to identify themselves, the researchers said. For example, three of the blogs in the study had recognizable photos of patients, including one with an extensive description of the patient and links to photos.”
There were other issues as well – advertisements on sites, for example, including some within the texts of posts – but the issues of privacy were certainly cause for the greatest concern.
I found it interesting, and even a bit absurd, that there were concerns about the author’s identity. If someone is sufficiently determined, it’s hard to remain absolutely anonymous as a blogger. Granted, I’m marginally anonymous here; but I’m not at all at the other site where I post. But even without that reference, it wouldn’t be that hard to narrow down where I find my ministry.
Did these medical bloggers instead believe that maintaining their own anonymity was somehow a substitute to maintaining the anonymity of any patients they might discuss? That might seem reasonable in discussing the common cold or even diabetes – conditions affecting so many that even some pretty specific characteristics might apply to lots of folks. On the other hand, even that can only go so far; and the less common the diagnoses discussed, the less value the anonymity of the physician would have.
Physicians and other professionals in health care write about patients all the time, for articles and presentations, or case studies, or teaching purposes. It’s common enough to discuss specific patients, and the means for protecting identity are clear enough. For example, in the normative case study form used in Clinical Pastoral Education, the Verbatim, most training centers of my acquaintance call for use of the patient initials only, even those the document will only be shared with other chaplains. It’s easy enough, when preparing for publication or presentation, to leave out or disguise information sufficiently to prevent identification. In some cases, it’s possible get the permission of the patient. It’s easy enough, too, to decide that if you can’t do those things, you can’t use that patient, that case.
This is not a new consideration. Professionals have been showing this level of respect for patients and their privacy for a long time. Even in research protocols, where publication is a reasonable expectation, there has long been expectation that potential participants would be given information about that before agreeing to participant. This summer one potential CPE blogger let me know not to expect anything about CPE on that blog, lest the blogger say too much.
But surely the issue is more pertinent now. Under the Health Insurance Portability and Accountability Act (the infamous HIPAA), a provider who violates the privacy or confidentiality of a patient’s protected health information (the difference is basically whether the means of violation is written or verbal [privacy] or electronic [confidentiality]) is liable for prosecution to the tune of $25,000 per incident. That might be $25,000 per inappropriate post. It might even be $25,000 per viewing – that would have to be determined, I think, in an actual case. One would think the providers would be especially careful, if only for their own protection.
I do suppose, though, that there’s one benefit to being able to identify the “anonymous” medical blogger. Any provider so inept or careless as to violate patient privacy this way needs to be identified, just so the rest of us have the opportunity to choose another provider.
I received a question this morning about the status of the Assembly of Episcopal Healthcare Chaplains (AEHC). The question came from the fact that the AEHC web site is down. That means, among other things, that the link to your left doesn't work.
AEHC is in fact alive and kicking. Efforts were underway to update the site, and to move it to Episcopal Church Web Hosting. We hoped soon to offer the site with a new look and new information.
However, no, right now it's not working. I've passed that on to the right people, and we'll see it resolved as soon as possible. In the meantime, if you'll link to my "complete profile," under my picture, you'll find a link where you can email me. I'll be happy to respond to any questions about AEHC, and about chaplaincy in the Episcopal Church, while the web page gets back up.
It’s the Monday morning after, and we’re all going to have something of a Lambeth hangover. I think that will be especially true for the bishops as they travel home, and for the many people who provided staff support (whether paid or volunteer). Still, to some extent it will also be true for us in that small but unique chattering class, the Anglican/Episcopal blogger.
I continue to have concerns, and will speak to those in detail as time goes on. However, I think what we can say about this Lambeth is that “it” didn’t happen. Indeed, it sort of doesn’t matter what “it” one expected; for there were several. But, as far as we can tell, “it” didn’t happen at Lambeth.
First and foremost, the Anglican Communion didn’t shatter. Granted, something like a quarter of the bishops of the Communion boycotted it, and a handful were un- or disinvited. However, matters didn’t become worse at Lambeth, and may not even have been made worse by Lambeth – at least by Lambeth solely or exclusively. If one expected this would be the end of the world as we know it, or at least of the Anglican world as we know it, “it” didn’t happen.
Bishops weren’t notable for their grandstanding. There were a few, as will surprise no one, as well as a few activists prowling the margins. However, they were few, and what grandstanding happened was kept out of official events. If one expected Lambeth to become a bully pulpit for the most strident voices, “it” didn’t happen.
The American church and the Canadian church weren’t expelled. True, because of the agenda and format few really expected that; but there were a few who hoped. Indeed, by and large American and Canadian bishops reported hearing and being heard beyond anything in previous experiences and for many beyond their expectations. If one expected a definitive purging of the “innovators” from the Communion, “it” didn’t happen.
Global South voices were heard, both in public and in private. Once again, that might have happened far beyond the expectations of those bishops. Yes, once again that quarter of the bishops boycotted. At the same time, there were many more who attended who agreed with the boycotters on virtually everything except the boycott. They certainly had their opportunities to share their concerns, both to other bishops and to the media. If one expected a “colonial” suppression of Global South voices by the mother churches, “it” didn’t happen.
Sadly, too, it appears that minds weren’t moved much on issues either of ordination of women or of full participation in the life of the Church of gay and lesbian Christians. Despite good efforts by American and Canadian bishops, and by events on the Fringe, gay and lesbian Christians weren’t listened to, even within the limited expectations one might expect considering Archbishop Williams’ commitment to Lambeth or the apparent continued acceptance of Lambeth 1.10 which called for listening explicitly. If one hoped for enough of a hearing to change some hearts, it looks like “it” didn’t happen.
No decisions were made, and no definitive statements were issued. Yes, there is a report; but it is largely a reiteration of “this is what various people said.” It wasn’t intended to express “the mind of the Communion,” but simply to note the breadth of agreement where there was agreement, and diversity of opinions where there wasn’t. If one expected clear statements on the current mind or the future decisions of the Communion, “it” didn’t happen.
Specifically, no Covenant was released, agreed by the majority of the bishops and prepared for the process of reception throughout the Communion. Two groups, the Covenant Design Group and the Windsor Continuation Group, got a lot of input and feedback; but even their final reports won’t be out until they’re considered next year by the Anglican Consultative Council. If one expected the Covenant would be produced, “it” didn’t happen.
What did happen, perhaps, was that the relational nature of the Communion was honored. Bishops have already written in many places that in the Indaba groups and in Bible study voices were heard, lives were shared, and relationships were built or rebuilt. I believe Archbishop Williams when he says there is a broad commitment to the Communion. It sounds like things were respectful, and that may result in more mutual respect.
It remains to be seen, however, whether this will result in a renewal of the Anglican-Communion-as-we-have-known- it, or will simply delay the restructuring of the Communion into several smaller bodies, more tightly linked within themselves and only loosely linked to one another. Personally, I find Archbishop Williams’ evident commitment to more centralized structures of authority troubling. However, I think the new and renewed relationships among bishops are valuable in and of themselves, and trust that God can use all of this for mission in our Anglican fields, and ultimately for union of the Body of Christ.
But if this becomes only a pause, only a gracious moment that doesn’t change the terms of the argument – not unlike that famous Christmas Day in World War I - we won’t be better off in the long run. We can’t be sanguine about meeting again in 2018; and as for Lambeth 2008, it will be as if “it” didn’t happen.
Those of you who have in the past left a comment will notice something new. I'm afraid I've had to add the Word Verification function to my comments. I've apparently shown up on a few "spam blogs," and Blogger had to reverify that I'm not one myself. I hope this will help with that, without unduly hindering anyone who wants to talk back. I appreciate dialogue with anyone. I hope this won't dissuade anyone from making a comment.
