Friday, December 17, 2010

Resources on DNR, AND, and Advance Directives.

I received this comment on my previous post:

Rev. Scott: You're right to encourage people to complete an advance directive, and also right to note that few do. One reason is that, as you note, people are often unfamiliar with the medical and legal terms. Many people have found our Five Wishes advance directive is a way of both starting the conversation, designating a health care agent, and giving that person instruction on what is wanted or not wanted. There are over 15 million in national circulation, distributed by some 23,000 partner organizations including churches. Learn more at --Paul Malley, President, Aging with Dignity

Mr. Malley has pointed to one good resource, and I thought it worthwhile to link it, and a couple of others.

  • Five Wishes from Aging with Dignity.  Mr Malley has pointed to perhaps the best known single program nationwide for not only making decisions about health care, but actually thinking them through.
  • The Caring Conversations program of the Center for Practical Bioethics.  While I'm especially proud of the Kansas City-based Center for Practical Bioethics, the Center is nationally recognized in promoting advance directive planning. The Caring Conversations program makes available in print or for download a workbook and forms in English and Spanish, as well as specialized workbooks for young adults and for aging military veterans.
  • The Advance Directive page from Caring Conversations, a program of the National Hospice and Palliative Care Organization (NHPCO).  NHPCO is one of the best known organizations supporting hospice and palliative care in the United States.  A feature of their page is a list of links allowing the user to download forms acceptable in each of the fifty states and the District of Columbia.
While there are many good resources available - indeed, you can request forms from any health care institution that accepts Medicare, and probably from most that don't - these are from organizations that are widely known and respected.  Feel free to review these resources, learn from them, use them, and share them.  I appreciate Mr. Malley's comment, and absolutely agree: all of us, really, need to be informed about these issues, and to make and share our decisions before they become critical.

Wednesday, December 15, 2010

Further Consideration of DNR and AND Orders: Thoughts on Public (Lack of) Awareness

I have written before about Do Not Resuscitate (DNR) orders and a recent effort to reframe them as Allow Natural Death (AND) orders. Last week there was a post on the subject on a New York Times blog.

There wasn’t really anything new in the article itself. It does, however, cite a research article more recent than the two I cited in a post last year (here and here). In fact, this study was a replication of one that I cited. I think replicating studies is a good thing, and this one basically confirmed the earlier results. (The study had the limitation of being a convenience sample; but I did find it interesting that it included a detailed list of the religious preferences of participants, and that two Episcopalians participated.)

Being the wonk I can sometimes be, I also took the time to read all the comments on the article. Those comments were also interesting. While something of a convenience sample in its own right, the comments also confirmed my own experience in some ways I thought worth note.

When I reviewed the comments, there were 65. While there were some professionals (physicians, nurses, EMT’s, etc), most respondents were, at least from what was shared, were not healthcare professionals. Some, both professional and non-professional, related specific events that shaped their thoughts, but most did not. All addressed in one way or another, the medical terminology of DNR and AND, and whether or not one term was preferable. A few respondents even suggested other terms they thought might be more acceptable. Mine is not a scientific, or even a statistical analysis. However, I think some themes were visible that I think reflect the current state of affairs.

* First, folks in the lay community are confused about not only the terms DNR or AND, but the variety of ways that care at the end of life can be shaped. Folks out there have heard the various terms of DNR (and now AND), Living Will, Advance Directive, Health Care Treatment Directive, and Durable Power of Attorney (DPOA) for Health Care; but they don’t know the differences among them. This became clear from the number of folks who wrote about a patient “signing a DNR,” which does not apply to DNR or AND orders, but to Living Will and Health Care Directive documents. I can’t say I’m surprised that lay folk are confused about these distinctions. I educate nurses regularly about the differences.

One particular distinction that lay folk weren’t familiar with was that a DNR order (or an AND order) is in fact a very limited order. It applies when and if – and only when and if – there is a specific event that might call for CPR. It doesn’t affect the identified plan for care, whether the plan is to cure or to provide palliative or comfort care, unless such an event takes place. On the other hand, Living Wills and Health Care Directives offer directions that can shape care, and that apply in broader circumstances.

* A second theme is that the movement to develop Physician Orders for Life Sustaining Treatment (POLST) is spreading, and has legal standing in some states. Professionals among the respondents referred to various acronyms, but all were based on the POLST model. Like a Health Care Directive, a POLST-type document is completed by the patient before there is need. Like a DNR or AND order, a POLST-type document is completed with the assistance of a doctor or other advanced practice professional, and is a set of orders.  There is some reason to think that they will be the step beyond Health Care Directives, in that the patient's preferences have the force of medical orders.  On the other hand, they can be misunderstood.  It was efforts to get Medicare funding for the time physicians and others spend with patients to complete POLST-type documents that triggered all the misleading "death panel" talk during the buildup to the new health care law.

* Few respondents expressed concern about their own deaths, but a number expressed concern about the death of another. That is, some were concerned that care might be withdrawn inappropriately and prematurely, primarily because of Living Wills and Health Care Treatment Directives. I have long said that few people are afraid of being dead, but many are afraid of the dying process. This is something different, although not a surprise: fewer folks are anxious about their own deaths or decisions, and more are concerned about decisions made for others and/or by others.

This is also consistent with my experience. Family members struggle when asked to make decisions that change the goals of care from cure to comfort. The various forms of Advanced Directives are supposed to help with that, and they do. It is easier on a family member to hear and support, "This is the preference your loved one has expressed," than, "What do you think?" However, there are still folks who fear that doctors will slant their information and decisions based on personal bias and/or business concerns, including some who responded to the story.

I think these are important issues that need to be addressed through education. That includes education of lay folk, but also of professionals. While the professionals responding to this blog post knew their business, I encounter professionals who don’t, and so can’t properly inform or educate patients and families. Sometimes, too, the poor information causes them unnecessary ethical questions in the course of providing care (not to say that there aren’t necessary ethical questions; but some are also unnecessary).

As a chaplain, and especially as a chaplain long involved in clinical ethics in hospitals where I have worked, these points of confusion or lack of information make it harder than necessary to make decisions consonant with the wishes of patients and/or families, and harder than necessary to communicate the decisions we make. Even as we support patients’ rights to make in advance decisions about their health care – including decisions that are different from those we might make, or even approve of – we need to have our terms straight and our information clear. It won’t eliminate our fear of the dying process; but it may well make it easier for patients to tell us about the care they want, and for those of us providing and supporting care to work together to meet those wishes.

Tuesday, December 14, 2010

An Episcopal Perspective: Distinctions That Episcopal Chaplains Bring to Health Care Ministries

I wrote this article for Chaplair, the newsletter of the Assembly of Episcopal Healthcare Chaplains (AEHC). The latest issue of Chaplair is now in print, and so I feel free to also share the article here.

When I first began writing a blog four years ago, I had one topic that I especially wanted to think about. That is whether there might be an Episcopal culture for health care, comparable to the distinctive cultures of, say, Roman Catholics or Seventh-day Adventists.

As I wrote about it (for me, a way of thinking out loud), I identified some characteristics that I thought an Episcopal culture might include. For example, the General Convention has never given specific directives on health care procedures. We have made some clear statements, but not statements that somehow separated us within the larger health care community.

I haven’t given up on the concept of an Episcopal culture for health care, even though I don’t think I’ve found it yet. However, I do think some of the characteristics I have discerned do give the Episcopal Church something important to offer in chaplaincy, and for us to offer as Episcopal chaplains.

We are remarkably well prepared to work in the multicultural, multifaith, polyglot environment of contemporary health care. Central to this is our commitment to the Baptismal Covenant. We have embraced as definitive of the Christian life, and certainly of our Christian ministry, that we will serve Christ by serving all persons, and loving neighbor as self. We have claimed for ourselves that we will “strive for justice and peace among all people, “ and not just our own; and that we will “respect the dignity of every human being,” and not just those who agree with us. Certainly, all professional chaplains commit to these things in codes of ethics and professional standards. We, however, have declared this as fundamental to our faith and practice as Episcopalians.

We are also, I think, well prepared to speak of the eternal in a variety of images. This is in part because we embrace all of Scripture as meaningful, while recognizing that in Scripture God is described in many ways, and addressed in many titles. We have made this formative for us in how many of these titles have been reflected in the Book of Common Prayer. Consider the variety of attributions of God in the many Collects of the church year, both in the Collects for Sundays and in those of feast days. Think of the many titles of God provided in the Psalms. I find this variety makes it very straightforward for me to pray in multifaith groups in ways that respect both my listeners and my own faith.

We have an appreciation of the power of liturgy, of structured and familiar responses, in the most significant moments of life. We certainly know the reality of that for folks like us from “liturgical churches.” However, I think many, if not most of us, have experienced how true this also is for those who claim other traditions. Once again, the Book of Common Prayer is a resource. Even when our words are not the appropriate words per se, we have experience structuring words and phrases to express the concerns and feelings of those in crisis. And, how many of us have discovered a chaplain colleague from another tradition making use of the Book of Common Prayer in her or his own professional practice?

As AEHC has gathered over the years I have advocated that we chaplains claim our place in the church. Many have heard me say, “As we are the Episcopalians among the health care chaplains, we are also the health care chaplains in the Episcopal Church.” It is also the case, however, that we are the Episcopalians among the health care chaplains. We have not defined our presence in our society to any extent by distinctive positions on medical practices. We do, however, bring tools and perspectives to health care chaplaincy that allow us to standout among our colleagues, and to serve patients, families, and staff from many traditions.

Saturday, December 04, 2010

The Power of Words, Even in Our Own Voices

I had an interesting experience yesterday.  On a whim, I attended a monthly meeting of the Grief Support Network.  This is a great local organization, with an excellent web site and resources.  There is a monthly meeting with a speaker, and the topics are always interesting.  However, I can’t usually go.  I have a standing meeting at the hospital at a conflicting time, one that I can’t miss.  Yesterday the meeting was cancelled, and I decided to take advantage of the opportunity.

The topic was “forgiveness,” and especially forgiving oneself.  As a part of the presentation, the speaker passed out a “mirror script” – that is, a set of affirmations one might read to oneself.  By reading the affirmations while looking in a mirror, one can get something of the experience of hearing them from another person, adding a sense of visible presence to hearing the words.  Since we didn’t have mirrors in the meeting, the speaker had us pair off and read them to one another.  Each of us heard this list of affirmations read by another.

As is always the case with such exercises, it felt stilted and awkward and artificial (even though each of us did his or her best to read the words with some feeling).  Beyond that, I am of a certain age and a certain inclination.  So, with all due respect to the presenter, I couldn’t get out of my head the image of Stuart Smalley, the character from Saturday Night Live.

But also I did feel something.  Even in that artificial setting, the words were good to hear.  And, since I am really pretty conscious of and concerned about my sins, I do have those things in my history for which I feel some need to forgive myself, even where I have been forgiven by another or when my concern is less a misdeed and more simple failure to meet my own standards.  So, I was aware of my need for forgiveness, and hearing the affirmations did feel good.

That happens more often than we know.  I frequently speak with students or others about reflective listening.  Of course, critical to reflective listening is testing out and confirming what one has heard.  So, often when reflective listening is taught the first step is, “What I hear you saying is….”  That little piece of script also feels stilted and awkward and artificial.  As a result, many students in the helping professions resist that phrase.  Unfortunately, they end up also resisting the practice.  As the student resists saying, “What I hear you saying is…,” the student also ends up not simply repeating back, but also interpreting and answering.  The student doesn’t confirm, but instead tries to take the next step – and sometimes in fact they haven’t heard what the speaker intended, but don’t know because they haven’t confirmed.

So, the educator presses back again: “Make sure you’ve understood.  Again: ‘What I hear you saying is….’”  As artificial as it seems, the students work through the exercise; and they discover that, as artificial as it seems, the students feel better for having felt heard.

Some readers may be aware of the computer program ELIZA.  ELIZA was originally intended as a means to test how humans might interact with computers, and whether a program could be written well enough that a user might not be able to tell whether he or she was relating to the program or to a human being.

A DOCTOR script was written for ELIZA, that did a pretty good job of simulating reflective listening.  Remember, too, that this was back in the days of teletype interfaces and early CRT displays, so there was nothing like the capacity to simulate interaction that our more sophisticated programs manage today.  However, even when simply reading the words as they clattered on the printer or as they appeared on an old green monitor, and even when the user was conscious that he or she was relating to a computer, folks felt better and felt heard.  Some also attributed meaning and even feelings to the computer.  This was consistent enough, and also disturbing enough to the researcher, that he dubbed it “the ELIZA Effect,” to describe humans projecting feelings onto computer interactions.

While I’m sure some projection of the users’ own feelings was going on, I also think that there was something about reading those words and processing them in the users’ minds that was meaningful for the users.  That is, the users found it comforting and affirming to receive and think about those words, even in the artificial syntax of explicit reflective listening, and even in the artificial setting of an early computer interface.  The words were powerful enough in themselves and in the minds of the users that it didn’t matter that the users knew they were interacting with a computer program with no intelligence of its own, much less emotion.  The computer program didn’t in any sense really care, and yet the words were sufficiently powerful enough that users felt cared for – and some felt it strongly enough to project a sense of emotion onto the program.

My point is simply to reflect on the power of words for us human beings, and for the value of hearing words that clarify and comfort and affirm.  They are powerful, even if the context seems awkward and artificial.  They are meaningful, even if the words themselves seem stilted and trite.  We enjoy them, and even benefit from them, however we hear them – even in our own voices, spoken to a mirror.

Wednesday, December 01, 2010

Toward a Sacramental Vote

I don’t know about you, but I’ve been thoroughly disgusted by all the political stuff this fall.  I voted, but as the day approached, the sheer volume of political noise around me (both as a measure of quantity and of intensity) was no fun.  With each election in these United States I envy more civilized nations with distinct, and limited, campaigning seasons – and the shorter the better.

Interestingly, I had two elections to require my attention, both coincidentally in the same week.  We had in my diocese the election of our next bishop.  That election, with its relatively minute electorate, took hours longer than my civic participation.

We have complained early and often that siblings in other Anglican churches “don’t get” our processes for making decisions, whether electing bishops or changing our canons.  We vote.  That’s not to say that nothing is ever done by a small group in the background.  However, sooner or later things come out into a very public light for resolution – well, most things, anyway.

I remember well when I first really thought about voting in the church.  It wasn’t that I hadn’t always seen it, but since it was “what we do,” I hadn’t much thought about it.  However, in 1976 I went to be a Visitor at the General Convention in Minneapolis.  (Yes, at General Convention Visitor is a particular status, and if you haven’t any other reason to attend, I encourage you to go as a Visitor.)  As a part of my preparation, I read a book on the General Convention (a title that, sadly, has been lost over the years).  It described the process as we carry it out, and the structure within which we do it.  Something that stood out to me, though, was the theological reflection on why we do things by vote.

The author’s point was new to me in 1976, but would now be familiar to many of us.  Each of us participates in the life of the Spirit through baptism; and through baptism the Spirit participates in the life of each of us.  Each of us has some awareness, some insight to contribute about how the Spirit is moving and calling in each of us.  So, the more of us involved in the conversation, the better we believe we understand how the Spirit is moving and calling us as a body.  This is not to ignore or deny Scripture and Tradition.  Rather, it is to trust both that Scripture and Tradition reflect how the Spirit has moved and called us in the past, and also that it is in and through the Spirit that we understand what Scripture and Tradition are saying to us today.  It is, though, to maintain that the Spirit of Christ is alive and active in our midst, if only we will listen.  It is also to maintain that the Spirit calls each of us equally – equal at least in that the Spirit calls us each as much as the Spirit can; and that differences are matters of our preparation, our willingness, and our capacity to listen, and not of the Spirit valuing some of us more than others.

When we vote, to the extent we are intentional and prayerful we are making that action of the Spirit incarnate and sacramental.  It is incarnate because we give it substance.  It is sacramental because our intent is to make outward and visible what we feel is inward and spiritual.  Sure, voting is not a perfect system for that, and consensus (when we can seek it, much less achieve it) might seem clearer evidence of the unity of the Spirit’s purpose; but we do it as the best we can in most instances, acknowledging those differences of preparation, willingness, and capacity.  So, we don’t vote simply because it’s “the American way.”  We vote with the intent of expressing each individual’s sense of the Spirit’s leading and of seeking to be guided by the greatest number of those individual expressions.

Which leads me to wonder what it might mean to assert that same principle in voting in our civic life.  I remember a wonderful, intense conversation with a colleague, a parish priest in my diocese.  He was an economic conservative, and I was, as I continue to say, “somewhere to the left of Jesus.”  What made that conversation not only possible but meaningful was that we agreed on the ends we wanted to see.  We each wanted our society to reflect in some sense respecting the dignity of every human being and doing for others what we would want for ourselves.  Our differences were not about ends but about means; and so our conversation was respectful even as our positions were different.

I wonder what it would mean for us to bring that same sensibility to our civic voting.  Oh, I’m sure we’ve done that to some extent.  We are encouraged to vote according to “what will be good for the children,” or “for the common good” (although like many I seem to hear fewer and fewer voices with any sense that there a “common good” to talk about).  What would it suggest to step a bit beyond that and to see the act of voting in civil elections as sacramental and incarnational?  Granted, perhaps that’s not something we might bring to civil discourse; but surely we could consider that in our own thoughts and in our own circles.

To do that, though, we might need to take a stand about what are indeed appropriate ends.  We have many issues, in the church and out, for which we come back again and again to say that “reasonable persons may disagree.”  If we are to say, as I did in that conversation long ago, that reasonable persons may disagree about the means as long as we agree on the ends, then we have to say that some ends are appropriate and some are not.  More to the point, we have to say that the Spirit is calling us to some ends and not to others.

For some time now whenever I have found myself in a conversation about ours as a “Christian nation,” I have had to say that I cannot say that.  Certainly, I am aware that most of our first national leaders were Deists, and not Evangelical Christians in our contemporary mold; but that isn’t my primary complaint.  Instead, I feel that we cannot speak of the United States as a “Christian nation” unless and until we are prepared to  incorporate the standards of the latter verses of Matthew 25, the first chapters of Acts, and the first chapter of James.  To me, those are ends to stand with, even if we find ourselves arguing about the means.

It seems to me, too, that these ends – serving the widows and orphans and the least among us, and making sure that all have enough – don’t have to be described as explicitly Christian.  To act justly and to love neighbor as self are principles we learned from our Jewish forebears.  Indeed, care for the poor, a commitment to justice, and doing to and for others as we would wish for ourselves are reflected in every religion I know.  Contemporary atheist and agnostic writers are happy to assert their own arguments for these principles.

But I’m a Christian speaking to other Christians, and particularly an Episcopalian speaking to Episcopalians.  We share a common language, centered in life in Christ described in the Creeds and the Baptismal Covenant.  I feel strongly that we can say that these are appropriate goals for us.  More, I feel we can indeed consider that these are the goals to which the Spirit calls us, not only in the Church but in society at large.

So, I joined with my neighbors to vote in civil elections, and with my diocesan siblings to vote for our next bishop.  While, that’s done, other civic elections will come – for me, as soon as local elections next spring.  We won’t all agree on who to vote for, or what programs or policies to support.  However, I will pray we can agree on this: that we are called to make our vote, like the rest of our lives, sacramental, to make manifest in the world the inward call of the Spirit.  No, I don’t really expect it will work out that way.  Still, I can hope and pray.

Advent Thoughts at the Episcopal Cafe

My newest piece is up today at Episcopal Cafe.  It's a reflection on how one church year ends and another begins.  I hope you enjoy it.

And as always I encourage you to look around the Cafe.  There's always something interesting to read and to see, and opportunities to respond and share.  Look at what my colleagues there have offered, and share with us what our offerings mean to you.  We at the Cafe look forward to it.