Monday, May 31, 2010

CPE Bloggers for Summer, 2010

Summer is beginning, and it's time for me once again to note the blogs of folks who will be going through CPE this summer.  Clinical Pastoral Education (CPE) is the primary clinical experience for those of us who are chaplains.  However, most of the folks who go through CPE aren't called to chaplaincy.  Instead, they're training for other ministries, and CPE is recommended by school or judicatory or both.  However, CPE provides an opportunity to learn about oneself in ministry that few other experiences offer.  And, while some folks take a while to realize this, the skills for self-awareness, assessment of spiritual need, and establishing relationships quickly all function on other arenas of ministry.

So, here is the list as I've found it so far this summer:

These are the summer students I've found to this point (and I'll add if I find others).  Take some time to check them out, and leave supportive comments.  CPE is certainly emotionally challenging, and encouraging voices are never out of place.
And then there are the continuing posts of Alan Abrams at abayye.  Alan is a CPE Supervisor, and his insights area always interesting.

So, take some time to check in with these folks.  CPE is always a time for great insight, even if often difficult.  At the same time, as I say periodically to CPE students, there are no bad experiences in CPE.  There are good experiences, and good learning experiences.

Friday, May 21, 2010

A Gap in "Double Effect"

There has been a news story widely reported recently (here and here, for example) about a nun, a bishop, and an abortion. Now, take your minds out of the gutter. This is about medical ethics.

Last November a woman was seen in a Catholic hospital in Phoenix. She suffered what the doctors called, "right heart failure," a symptom of pulmonary hypertension.  She was also eleven weeks’ pregnant.

Now, pulmonary hypertension is in and of itself a life-threatening condition. While there are treatments for symptoms, there is no cure. It raises blood pressure, makes it harder to breathe, and makes the heart work harder.

Which are circumstances it shares with pregnancy. And not only does pregnancy add these stresses to the body, but the stresses only increase as the child grows. So, if this woman had a life-threatening condition at eleven weeks, her doctors felt she would have a fatal condition before she could possibly bear this child.

The only definitive treatment would be to end the pregnancy. The woman was willing. But, she was in a Catholic hospital. Could the procedure happen there?

When that question arose, it was addressed to the hospital's Ethics Committee.  The Committee included a hospital administrator, herself professed religious. The Committee felt the procedure could happen – regrettable, perhaps, but possible. That was because of Directive 47.

Directive 47 is a principle stated in “Ethical and Religious Directives for Catholic Health Care Services,” from the U.S. Conference of Catholic Bishops. The Fifth Edition was published in November of last year, but Directive 47 was also in previous editions. Directive 47 is among the directives in “Part Four: Issues in Care for the Beginning of Life.” It reads,

Operations, treatments, and medications that have as their direct purpose the cure of a proportionately serious pathological condition of a pregnant woman are permitted when they cannot be safely postponed until the unborn child is viable, even if they will result in the death of the unborn child.

This directive is a classic expression of the principle of double effect. In essence, the principle of double effect states that if a moral action is necessary and its intent appropriate, a second but unintended consequence may be morally acceptable. While the phrases “double effect” or “unintended consequence” do not appear in a search of “Ethical and Religious Directives for Catholic Health Care Services,” the principle does appear elsewhere, and specifically in Directive 61, dealing with pain management at the end of life, where it says in part, “Medicines capable of alleviating or suppressing pain may be given to a dying person, even if this therapy may indirectly shorten the person‘s life so long as the intent is not to hasten death.”

Interestingly enough, the principle was first articulated by Thomas Aquinas to address issues of self-defense. Defending oneself is a good end, as long as the means is proportionate (no swatting a fly with an atom bomb). If one intends to defend oneself, using proportionate means, without specific intent to kill the attacker, then if the attacker does in fact die the killing is not murder. (A good discussion of “double effect” is available as part of the Stanford Encyclopedia of Philosophy.)

It’s easy to see how this would apply in general in health care. Protecting life and health is good. Doing so might involve means that are proportionate, but that would be bad independent of protecting life and health – as in surgery, which slices into a body to heal and not to hurt. And good practice is to choose the least risky (read “most proportionate”) treatment available. So, even though it causes damage in its own right, and certainly pain, the incision is surgery and not assault. The “good effect” intended in treating the patient is more relevant than the “bad effect” of cutting the patient.

The question, of course, is how this would apply in following Directive 47, and in this specific case. Certainly, as far as we know neither the physicians nor the patient had as their intent ending the pregnancy. However, the continuing pregnancy, including the growth of the fetus and other changes affecting the patient, would, as the physicians and patient saw it, result in the death of the patient and so of her fetus as well. Her condition was too fragile to wait, and too fragile to transfer to another facility. So, there was no “more proportionate” action that would protect what life and health could be protected. So, why, then, would the bishop excommunicate the nun for per participation on the Ethics Committee?

The problem, at least within “Ethical and Religious Directives for Catholic Health Care Services,” is that while there was no “more proportionate” action to take, the action in question was an abortion. We need in that light also to consider Directive 45:

Abortion (that is, the directly intended termination of pregnancy before viability or the directly intended destruction of a viable fetus) is never permitted. Every procedure whose sole immediate effect is the termination of pregnancy before viability is an abortion, which, in its moral context, includes the interval between conception and implantation of the embryo. Catholic health care institutions are not to provide abortion services, even based upon the principle of material cooperation. In this context, Catholic health care institutions need to be concerned about the danger of scandal in any association with abortion providers.

And just to be sure that the word “never” means never, consider Directive 48: “In case of extrauterine pregnancy, no intervention is morally licit which constitutes a direct abortion.” In “Ethical and Religious Directives,” a footnote at Directive 48 refers explicitly and specifically back to Directive 45. While not usually as immediate a risk as primary pulmonary hypertension, an extrauterine (tubal) pregnancy can certainly be life-threatening. Taken together, while not common, there will be circumstances, then, when the life of the fetus is more important than the life of the mother, even when the life of the fetus can’t be saved. (Remember, best medical advice was that the patient’s pulmonary hypertension would kill the patient before this fetus might grow to be viable.) We might acknowledge that the Roman Catholic Church in a real sense applies moral personhood from the moment of conception, and say “child” instead of “fetus;” but it doesn’t change the real bind. It simply makes our clause, “the life of the child is more important than the life of the mother, even when the life of the child can’t be saved.”

I’m not a Roman Catholic, and do not work in a Roman Catholic facility; and so while I can understand the bishop’s logic, I can’t agree. I think the premises are flawed (specifically full moral personhood for a fetus, and preferring a fetal person over a born person). And some questions aren’t addressed in the news stories. If the procedure happened in November, why is it only being addressed now? Did communication happen at the time between hospital and diocese? How much did the bishop know when he made the decision to excommunicate the nun? Was his the “most proportionate” response? Is this affected at all by that last concern of Directive 45, “Catholic health care institutions need to be concerned about the danger of scandal in any association with abortion providers?” One has to ask whether the scandal wouldn’t have been just as bad – or worse – had the patient died in the hospital while the staff worried more about preserving her pregnancy.

The procedure happened, and the patient lived. She lost a pregnancy that we presume she wanted. The nun can be returned to the communion of the church, if not to her administrative position with the hospital. The bishop has taken his stand. The situation is over. At least until next time….

Tuesday, May 18, 2010

A Side Thought on Being Evidence Based

So, just a brief thought.   In medicine, one reported event is anecdotal evidence: interesting, but not convincing.  However, many reports become evidence.

So, the occasional report of the experience of the presence of the risen Christ is anecdotal.  But more than nineteen centuries of reports....

Wednesday, May 12, 2010

Reducing Tube Feedings: Two Articles

I have long said that Scott’s Axiom on Moral Decision Making is that “Moral decisions are made emotionally, and justified rationally after the fact.” I intend that to be simply descriptive, and not evaluative; I know that I’m just as prone to that as anyone.

So, you might imagine that it caught my attention when I ran across an article titled, “Informed Decision-Making Surrounding the Use of Chronic Enteral Nutrition: Let’s Talk the Talk” (Southern Medical Journal, Volume 103, Number 2, February 2010; pp. 109-110). There is hardly a medical decision more laden with emotion than the decision to insert a feeding tube; and recent cases examined in the courts and in the court of public opinion have highlighted that.

The article by Joseph W. Shega, MD, is actually an editorial comment. It is commenting on another article in the same edition of the Southern Medical Journal, “Effect of Physician Education and Patient Counseling on Inpatient Nonsurgical Percutaneous Feeding Tube Placement Rate, Indications, and Outcome” (Southern Medical Journal, Volume 103, Number 2, February 2010; pp. 126-130) by Arun Swaminath, MD, et al. This is an interesting research study. The study, carried out in a hospital that is part of a major health maintenance organization (what Swaminath et al describe as a “pre-paid group practice), looked at the results of educational interventions on the number of percutaneous feeding tubes (PFT’s) before and after the introduction of a program of education both for professionals and, as referred, for families and surrogate decision makers. (Most professionals would be familiar with PFT’s as PEG or PEJ tubes [percutaneous endoscopic gastrostomy or percutaneous endoscopic jejunostomy, respectively].) In 2005 a geriatrician in the practice began to offer “a comprehensive program of education for physicians and counseling for patients and their families on chronic enteral tube feeding.”

She provided a one-hour educational seminar to the hospitalists, neurologists, speech therapists, nutritionists, social workers, and gastroenterologists in separate department meetings attended by the majority of practitioners. The seminar included information about the pros and cons of long-term tube feeding and included illustrative case summaries. She gave the attendees copies of 2 pamphlets: “Should My Loved One Have A Feeding Tube?” and “Fast Facts About Artificial Nutrition” from the Education and End of Life Palliative Care Curriculum. (Citations for these brochures are included in the published article.)

In addition, where referred by physicians the geriatrician would provide consultations with families.

Each consultation included an assessment of the patient’s prior functional status and patient’s social support network and how the patient’s life had changed over the past few years. Matters such as living arrangement, spiritual heritage, and prior known wishes were always discussed in detail. The geriatrician explored the value system of the patient and family, family dynamics, medical indications for PFT placement and the prognosis. She provided value-neutral information regarding the options for care, focusing on specific goals. Specifically, she discussed the experience of hunger and thirst at end of life, the usual attribution of death in terminally ill patients to disease rather than malnutrition, and complications after PFT placement, including aspiration pneumonia. If an advance directive denoted a durable power of attorney for health care decisions, that person was included in the discussion along with other family members, friends, and spiritual advisors who were relevant to the patient’s care. She gave the patients and/or decision-making surrogates the same 2 educational pamphlets that she had given the practitioners. When advanced directions were lacking and surrogates were involved, the emphasis was on determining what the patient would want.

In 2004, before the education intervention began, 115 PFT’s were placed by gastroenterologists (GI doctors) or by interventional radiologists (IR doctors) for patients included in the study group. In 2005, the year the intervention was practiced, 60 were placed in patients meeting the same inclusion and exclusion criteria. Swaminath et al note that “PEG placement is the most common procedure in many practice settings, and over 200,000 PEGs are placed annually in the United States. Assuming an average cost of $2200 per PEG, the yearly cost for PEG in the United States approximates $440 million (excluding costs of treating complications).” Certainly, a reduction by almost half would certainly mark a significant change.

This is an interesting study, worth reading on its face. It has certain limitations that the authors readily acknowledge themselves, but not so serious as to discredit its conclusions. However, together with Shega’s commentary, it highlights significant ethical issues. Most important are comments in both articles on what we actually know about the benefits associated with PFT’s for many patients who receive them – or that aren’t associated. Swaminath et al note, “Studies of long-term tube feeding of patients with dementia have many design flaws and there are no randomized trials. Available data reveal no clear nutritional benefit or reduction in morbidity and mortality, yet many primary care physicians have concepts that differ from research findings about the value of tube feeding in advanced dementia.” Shega echoes this, noting that, “the cited benefits of use; prolonging life, preventing aspiration, healing pressure ulcers, and providing comfort, do not appear to be supported by available evidence.” I would note, too, that in supporting their comments, authors of each article cite different sources. This suggests more validity to the observations.

Both articles, and Shega’s comment especially, point out the important ethical issues involved. Certainly, if the benefits attributed to PFT placement are not actual, there are significant issues both of placing patients at inappropriate risk, and of wasted use of resources.

Even more, I was struck by the approach of the geriatrician when she was referred to families. While she dealt with the issues related specifically to PFT placement, her topics in educating the families reflected those many of us have used in approaching advance care planning generally.

Issues of tube feeding have gotten particular attention in recent years. Indeed, Swaminath et al note specifically the attention to Terri Schiavo’s last years and death. Many families we might speak with will have particular images of “starvation,” and consequent emotional responses, even if that is not the actual circumstance of a patient who is dying of other known causes. In light of this, and especially if enteral tube feeding doesn’t provide the benefits attributed to it, this level of intervention and education would seem to be a benefit to patients and families alike. At least these articles and the questions they raise are worth considering.

Friday, May 07, 2010

What a Chaplain Has Learned About Grief, Part 2

I wrote this several years ago to present to an adult Sunday School class. I have used it since to share with a parish visitation group and a parish that lost its church to arson. I have recently revised it and thought I would share it here. This is the second installment.  The first is here.

5. So, what can one expect?

First, you can certainly expect to feel shock and denial. Understand for yourself and for others that a certain initial denial is normal and even desirable. Denial is literally the emotional shock absorber. You don't want to live there, but you can't help but go there at first. Again, this is important for us to know who want to help someone grieving. That initial reaction that appears to be disbelief is, if you will, cushioning for the soul.

It is rarely necessary to confront this, at least in the initial minutes, hours, and days after the loss. Most of the time those who seem to express disbelief and denial are not really trying to deny facts. They’re trying to express the intensity of feelings they can’t yet sort out.

Second, you will realize that the world is not the same, and you are not the same. I remember when the dean of my seminary died, about a year after I graduated. He was a great scholar, but he and I had knocked heads almost from the time I arrived, probably because we were so much alike. I spent most of my seminary career angry with him, and was still expressing that when I learned of his death.

But when I learned of his death I realized a sudden, painful absence. I had lost the person I had loved to hate, and suddenly, even a year out of school and a thousand miles away, my world was not the same.

Obviously, this is one of those times where the sense of change is proportional to the importance of the person or thing lost. Minor losses do change our world, but it doesn’t take too much grieving or too much time to adapt. For a major loss, the magnitude of the change in reality makes adaptation much harder.

It might be easier to imagine if you think of your loss if your house burns down. How long would it take to replace just those things that you can replace? Home? Belongings? Clothing? Even to replace the replaceable takes a lot of time and energy. And what about those things that can’t be replaced, like family photographs? If it took you years to accumulate the lost set of photographs, it will take you years to accumulate a new set.

Now, move from that to the loss of an important person. That person can’t be replaced. Another person may take on the roles and activities in your life that the lost person took. A widow may marry again, and a child may find other older persons who can provide love and support and mentoring. But the new person can never be the old person, and the lost person is not replaced.

By the same token, if the world is not the same, then I am not the same – not the same in the world, and not the same in myself. If my parents die, what does it mean to be their son? Certainly, not what it did while they lived. When my first wife divorced me, and my children moved to live with her, what did it mean for me to be a husband and father? Granted, I hadn’t lost everything of who I am; but what I had lost was absolutely enough to change who I am.

It’s out of these experiences that we feel the anxiety and anger. Yes, this is frustrating and frightening and out of our control; and being frustrated and frightened and out of control, we feel anxiety and anger.

Again, that’s important: when we feel that anger, or we see someone express that anger, we need to appreciate it as normal. It may not be comfortable. It may not even make sense at the time. However, it is reasonable, inasmuch as it makes sense in light of the loss.

In fact the broad spectrum, and the apparent chaos, of our feelings in grief are a reflection of this. All of these feelings are a part of doing the work of grief, which is initially to mourn and let go the person or thing or situation we have lost.

This leads to the third point: the world has changed, and I have changed, and we don’t get the old world, the “old me,” back. It is normal to hear someone say, “I just want things to get back to normal,” or, “I just want things to go back to the say they were.” But the person lost, the situation lost, simply isn’t replaceable.

I have used the word “adaptation,” because we don’t back get the old normal. Instead, we build a new normal, a new way for things to be. That will be enough; indeed, it can be good and joyful. But it will be new; it won’t be the same.

This building of the new normal is the other half of the work of grieving. We can’t get the old normal back, and we can’t simply stop, simply stay where we are. We have almost not choice but to begin working on the new world, and we won’t feel anything terribly brave about it.

This is, in fact, hard work. It takes time and effort, and on any given day we may not feel capable. However, we really have no choice: we continue to live in the world, and the world continues to go on. We will do, over time, what it takes to come to terms with the new way things are.

This is why I talk about good days and bad days – even good hours and bad hours – as the measure of our progress. In the initial days of shock and anxiety and anger, there will seem to be many more bad times, bad days, than good. There will be times when we are truly dysfunctional, unable to get out of bed or take on the tasks of the day. More often, we will be able to do what we need to, but with a continuing sense of sadness and heaviness.

And gradually that changes. We discover that, while we are not the same, neither are we altogether different. While we don’t get the old normal back, some parts of it continue. With time and effort the balance shifts. We reach a point where there are more good times than bad times, more good days than bad. It’s not that there are no bad times; they are just less frequent, and less debilitating. There will still be sad times. They will simply come to be outnumbered by good times.

This is the hope in grieving. When you embrace the work, when you work through your grief, you have the promise of a new normal that is once again good. No, it will not be the same, but it can be good and joyful and filled with hope.

6. You can’t do it alone.

Notwithstanding my comment that we must each grieve in our own way, none of us grieves effectively alone. We are no more created to be alone in our grief than we are in our love. Being in relationships is part of the nature of being human, and in the stress and work of grieving we need people.

Now, we may meet that need in a number of ways. Most of us will rely to some extent – usually to a great extent – on family support. At first this may seem like the blind leading the blind: if we are grieving, it’s likely that other members of the family are grieving. However, the companionship of another that has experienced the same events is as helpful in grief as it is in any other experience. And since none us is ever in exactly the same place emotionally, we do have something to give one another, even when both of us are grieving.

This is also where the Church community can be most supportive. Our Christian siblings will not necessarily share with us the same experience or the same feelings, but they will share with us the same hope, both for us and for the person we lose.

We clergy are certainly a part of the support the Church has to offer, but we are hardly the whole community available. I do hope you will call on and depend on your clergy. In addition to the Christian hope we all share, we clergy do have some additional experience and training in addressing grief and providing support. Sure, some of us will be better than others; but all of us will, I believe, acknowledge the need and do our best to meet it.

In some cases, there is also a need for other persons for support. For many, grief support groups and education groups can provide strength and information and encouragement as we adapt to the new normal. Good groups are professionally led, and provide both a place to unload our own pain and for us to provide help to others. Both are good for us.

And for some people there is a real need for professional counseling. We may seek that from clergy in formal pastoral counseling, or from a clinically trained psychologist, psychiatrist, or social worker. For the person whose grief continues to leave them unable to function, to re-engage in life, counseling and therapy can be really helpful. For some of us, it’s just easier to share the feelings and the struggle with someone who is independent of and outside our normal circle.

If we get to that place, it’s important to remember that we’re not somehow “sick” or “crazy.” We simply need that additional help to continue and complete the work that grief requires.

So, that’s what a Chaplain has learned about grief. I imagine I was correct at the beginning: it’s not really new.

But, then, grief isn’t new, either. We all will lose, and we all will grieve. And when we grieve, if we will do the work grief requires, allowing those who love us to help us through, there is beyond grief the promise of new life, a new normal, that is indeed good and joyful and filled with hope.

Thursday, May 06, 2010

What a Chaplain Has Learned About Grief, Part 1

I wrote this several years ago to present to an adult Sunday School class.  I have used it since to share with a parish visitation group and a parish that lost its church to arson.  I have recently revised it and thought I would share it here.  This is the first installment.

I'm going to share with you my thoughts out of almost thirty years as a chaplain.  Much of what I tell you will seem trivially true: you've heard it before. However, it is also my experience that these things are worth hearing again. When the times come that we need them, it's worthwhile to have these things well reinforced.

1.  You are going to grieve.

It's not a matter of "if" but of "when." Grief is the natural emotional and intellectual response to loss, and all of us will lose something or someone some time.

This also means that there is no escaping the process: once the loss occurs you are going to grieve, whether you want to or not. Not all losses will be equal, and so grief will not be the same every time. But in some way appropriate to each loss you will grieve.

2.  Every person has to grieve in his or her own way.

This is important for us to remember. When we're grieving it's very freeing that we can do what we need to do, whether it suits anyone else or not. 

Of course, even this blanket permission has its limits. It is very important not to deliberately injure yourself or another when you grieve. It is also possible for grief to make you dysfunctional, emotionally and intellectually "stuck." 

I will say more about that. However, in general you have permission grieve as you need to.

This is also important to us as we care for someone who is grieving. We can't expect a person to somehow "grieve right," to meet our set of expectations of how that grief should be. 

Folks in health care are as bad about this as anyone. We've read the articles, we know the studies, and we think we know what "normal" or "healthy" or "appropriate" grief is.  In fact, "normal' is a pretty broad range. As long as the person isn't doing harm to self or to another, or isn't so stuck they can't function, things are probably all right.

3.  Important grief will not happen fast.
More than a decade ago I was in conversation with a medical resident about a patient. The patient, according to the resident, was demonstrating unhealthy grief. The patient was still grieving a death after six months! I had to teach the resident what we knew then: that for an important loss it was within the range of normal to still be grieving actively a year later. 

I say "what we knew then," because in fact we know now that for a significant loss - death of a spouse or a child –active grieving may continue for three years.  And some losses – divorce when there are children is the best example - can raise feelings of grief for much longer, as new losses resurface old losses.  As I’ve said, the time and process of grieving will be appropriate for each person, and appropriate for the loss suffered.  Time is not the best measure. 

A better measure is some sense of "healthy," and the best measure of healthy is "functional." And this is the best guide to "functional:” as time passes, is the person becoming more able to do, first, what he or she has to do, and then what he or she wants to do? Again, this is not what we think the person needs or wants to do, but what that person needs and chooses to do.

4.  Forget stages.
Years ago now Dr. Elizabeth Kubler-Ross published her famous book, On Death and Dying.  Over the years it's become something of a standard, and it's easy to see why. Its five stages of grieving are clear, handy, and easy to remember. It's something all of us have learned.

Sadly, it's wrong; or if not wrong, it's usefulness is not nearly as universal as has been portrayed. It's wrong in large part because it only considered one group of grieving people and one sort of loss. For most people in most circumstances her scheme is too cut and dry.

Now, to her credit let me say that she does say some things helpful in what we call "anticipatory grief." That is, the grieving we can do when we know a loss is coming, but it hasn't happened yet. She was working with patients who had a terminal diagnosis. Knowing they were going to die, they did grieve, and they did experience the feelings she describe: shock and denial, anger, bargaining, depression, and, at least in most cases, acceptance.

However, I think there's a lot more to be said.  First, while they all felt those feelings, the list too limited. In fact persons in grief, whether it's ahead of the loss or after the loss, feel a wide range of emotions that includes those, but also includes sadness and frustration and fear and sometimes even happiness and relief. I would suggest a better book is Good Grief by the late Granger Westberg, in which he describes a wider variety of feelings and experiences for the grieving person.

Second, it's too pat to think of these as stages.  Grief is not a clean, step-by-step process in which one experience is left behind when you enter the next stage. Rather, on any given day when you're grieving you may experience any of these feelings. The process of grieving doesn't fit into a pattern, and you may well feel some acceptance or stability one day, and raging anger the next. 

What I think one can say is that early on there will be more bad days than good, when there are good days at all.  But over time the balance will shift, and good days will come to outnumber bad.

Let me say one other thing about anticipatory grief.  There is only so much grief work you can do ahead of time.  You will certainly begin grieving once you know the loss is coming, and you may well reach some level of stability.  You will still feel again the shock, if not the denial, and a lot of sadness when the loss actually arrives.