5/3/2006 Vol. 3, No. 7

Professional Practice

Rev. Paul Kapp, Ph.D., on God and Alzheimer’s

"When the mind is 'out'...where is God?"

With this deep theological question, The Rev. Paul Kapp and I have been corresponding via e-mail for the past two years. It started when Paul responded to me when PlainViews found its way into his e-mailbox. Paul is a retired Methodist Minister and CPE Supervisor who, when he first wrote to me, was in the second year of living his life with his diagnosis of Alzheimer’s. He is now in his 80’s and still has the ability to “converse”with me via e-mail, almost four years into his diagnosis.

When Paul first wrote to me he said that God had been with him all of his life and he could not imagine God not being present with him when his “mind is out.”I decided to pursue that with him. I asked him to write to me whenever he thought about it. Some e-mails went on at length and took some deciphering. Others were crystal-clear. Our dialogue has been a rich theological one with Paul sending me incredible insights about his belief that God is still present, even with those who have Alzheimer’s. Paul and I want to share parts of our dialogue with you. This article is longer than most. We hope that you will find the length acceptable as you read about Paul’s insights and struggles and joys. We did not want to edit out too much so that you might better understand where God is for Paul and how important it is for Chaplains to be present for those with Alzheimer’s. We hope that through Paul’s insights, you will find new ways to be present with those who have Alzheimer’s and with their families.

The Rev. Paul Kapp and Martha Jacobs, Managing Editor, PlainViews

(/// indicates the end of an e-mail message)

Now, my experience with Alzheimer’s –so far attendance at worship is a must for me, and I seem to be able to respond to the order of worship, the sermon, prayer, scripture, and friendly relationships with other folks. ////

If one loses mental levels, “Where is God?”is the question I wrestle with. I argue with some of you clerics, God is in the space between us, but when my Alzheimer’s comes to fruition, then I would not be saying that….and the “contact between me and God…prayer, etc., well what now? I’m sure that there must be some astute theologians who may have written about this. ////I'm "in process" in reference to Alz. My intent - I love to write about my Theological Aspects of Alz. Sort of a "Mr. Alz Goes to Church" .. Issue is, when the brain is empty via Alz, where's God for an active believer do then?
In CPE I always believed God was in the space between the chaplain/patient .. even though the patient did not get beyond the "relationship" with me, as chaplain ..held worship services, the patients sang, bowed their heads for prayer, .. sing the songs .. patients at Osawatomie would carry a Bible, prayer, sing, and worship .. I'd say that these objects connected with some memories .. not yet destroyed by psychosis.
Memory - my years of OSH .. patients had 'understandable' ways to connect to another person .. verbal ? ...not always .. make sense .. some times..they knew it was Tuesday because we had a ward worship service before dinner ..Now, my experience with Alzheimer’s –so far attendance at worship is a must for me, and I seem to be able to respond to the order of worship, the sermon, prayer, scripture, and friendly relationships with other folks. ////

If one loses mental levels, “Where is God?”is the question I wrestle with. I argue with some of you clerics, God is in the space between us, but when my Alzheimer’s comes to fruition, then I would not be saying that….and the “contact between me and God…prayer, etc., well what now? I’m sure that there must be some astute theologians who may have written about this. ////

I'm struggling with the theological dimension of dementia. I'm looking for some information about theological notions about the presence of God in one's thought, mind, spirituality... when the brain no longer functions. Obviously, I would expect my pastor to visit with me when I'm "out of it" but I also expect I'll be in lalaland when my pastor visits me... yep and I'll receive the communion, but will also be wondering, what was that? ////

My notions about Alz and Theology are in process. I've observed other folk in that later stage. The mind is simply non-functional. I'm not there... yet... so I've got some time for research. I'll send ideas as they blossom. ////

I'm looking for some article or published material RE: the "Theological Dimensions of Dementia" aspect when one has Alzheimer's. I would like to write something about the "theological" aspects of the Alz situation. I understand Alzheimer's pretty much clears the shelf called memory. Wonder if religion goes out with the dust. God in my mind? BUT, I don't have a "mind" at the end of the "parade" or does one still hear the band? Well, I'm not "there" YET, so I've time on my side to get some ideas on paper. ////

Good Morning Martha! Thanks for your note. I am writing within a beautiful "Frame" outside. Blue sky, sunshine, and clouds, only an artist recommended it. Cool (I mean the weather).
And this framework will influence some ideas, like seeds, will grow to flowers of poetry. An effort to frame my history in such a way that some "artistry" might be obvious. At one time I did some "oils" with the help of a real artist. He and I were pastors at small Methodist churches a few miles from each other. Those were the days in Kansas! I trust you will find your day a reward for your sensitivity and kindness. ////

So, "Theologian, where is God for the Alzheimer patient?" A rather dizzy way to write a book! So far, my mind is "intact," so why not be a "dizzy Alz"! The situation is most interesting! No one knows why Alz. What to do with Alz. No medication that "cures" Alz, so far. So, take the meds, dream a book, stretch ideas, and keep busy feeding my squirrels off the back porch. ////

I think the thrust of a paper might be, we have little control of memory. Psycho- theological issues. If you want to get a bit close to this idea, then we can say some memories are life-giving! Balances out! And it takes a lot of plain guts to be gifted with forgiveness. ////

I'm still doing some visits with family members. California and Florida. My Alz seems to respond to my Dx from my Physician. Hopefully I can get into the prep a paper about "Aspects of Alzheimer's - Theology" or something like that.

I've a lot of meds that seem to keep me stable. So time is mine, so far. Although, I do find myself timely searching for the "right" word in my talking/writing.If you have some ideas that might steer my paper toward the readers of PlainViews -- I must say my Alz has stayed as I reached my 79th so I want to "get with it" for a sketch for PlainViews.////

Ok, I'm into the "challenge." I'll send you a "rough outline." I attend a Alz meeting bi-monthly, and I have realized that my "intrusion" of Alz is not as serious as some other Alz patients I attend with at the Alz group therapy at our organization here in KCMo... so far.////

My Alzheimer's seems to "creep" to keep me down. So I'm "set" to get my contribution for readers who want a theological view of Alzheimer's. ////

Yep! I'm still in the "stall" getting my oats (ideas) ... for my thoughts on Alz that will "talk" to those who have Alz and their friends/family. The task as I see it... is the Alzheimer's patient is expected to lose the mind, though ... not happened to me yet ...I'm still working to get "it" on paper Another issue is also how can we speak to the family members who care for the patient ... I'm a former hospital chaplain... so I'm still working from experience that can be put on words... ////

Martha I think Dr. Alzheimer, a German physician scientist, (1902) discovered the source of what is now Alzheimer's disease. A brain shift causes a loss of memory. And so many things hinge on memory.

For me I've experienced such... my address, telephone number, the day of the week. Driver's license - no more. I reassure time and place via the newspaper, TV, and friend's advice and the call for dinner. Relatives - I need some help -- neighbors, folk at our Church, and which relatives at which addresses.

Maureen, my wife, has magic! Her expansions of options beyond typical solutions of problems hits the bell. My physician prescribes various medications and vitamins. My wife has become a deity for me for help "where did I put my hat?" and "what day is it?" I recognize my four sons, their families, and they send gracious support.

I have satisfaction from those memories of times on the farm - Arkansas, 1931. Also those memorable rides with my father on those old steam locomotives…but can’t remember where I put my hat. I find great satisfaction with my art with various colors, pens, pencils. I have my "office" at a room facing East with trees, and many birds. Those birds are comical as they find that food.

While my theological dimension has extended my tolerance for limitations, it has also provided ways to bless the day for which I'm thankful. ////

I am just lucky!! My experience with Alz encounters: No more driving a car! Ride but not drive! My experience with loss of words is most prominent now. I can get into a sentence, and forgot what I was trying to say... or not find the right word... and spelling -- I can remember the word I want, but have lost how it is spelled... What I did yesterday ... well, to be sure look at my "Daily Suggester 2005"... and I can orient myself to the now ...Yesterday ? well depends if I took notes... not sure.
I do remember today is August 7. Seems very slow, but sure, that some memory will suffer a shut down on a few memories or the 'right' word.

To those theological networks... well I prefer simple. God is between you and me... spatial... church services, Scriptures, and Hymns ... sermons? hard to follow .. friends there .. new folk? not so sure, old friendships .. still there ...Funny thing is I can observe my self as it recalls history or yesterday...////

Martha .. on the "presence" of God .. or do I still 'believe' in God .. Yes... what I think is pathway to the presence of God may not provide as much as I find in the sound of the hymns, the exchange with other folk at worship, but the theological dimensions are fading... for me it is the slowness .. and time can go by and, then, I'll stop and realize I have not had that theological notion anymore .. what quirk made me even ask the question ... I must say it is a weird path ... am not scared ... nor "mixed up" ... just fading, not there, and amazing, I can realize it's fading... as if I am an objective part of my mind that observes …////

Alzheimer's is like a "JIGSAW;" the pieces don't format themselves to the pitch of my hands ... I used to paint with oils with crafty brush strokes at "my" direction. But Alz does not reflect on "direction"... well of course, my production might be just what is wanted by some artistic viewers - otherwise in a "crazy" mood.////

My Alz has thus far dampened my memory. It's like when my mother asked me to go to the grocery (1935) store at the age of 7. I'd forget that she asked me to bring a pound of bacon from the store. Well, now I'm 79... and same thing as age 7, I forget what I was supposed to .. whatever. Not to reduce the heavy sense of Alzheimer's to a 7 year old's perception, but the "control" of memory IS an issue for me at 79. If you asked me what store?, street?, is "today" Monday or Thursday? Puzzled, I pause. An "answer"- and I look it up!

Martha, I'm a PhD. Got it the hard way. Few years ago, the alarm sounded! I was preaching in a rural Church in Ohio - forgot my Bible, my sermon notes, panic! Any old sermon notes - please come up. Silence! So, I said to that congregation, "something has happened to me, and Let's have the last song, prayer, and go home." Woe is Me! That next Monday my doctor, tested, and diagnosed ... "Yep, you've got ALZHEIMER'S".

Now this is the background I'm coming from. MY issue is - how can I thresh my seeds of Alzheimer's to benefit other folks? I attend regular meetings sponsored by the Alz Clinic here in KC and they are pushing me to "get your book done and send it to the publishers!!"////

When I die, then, I expect to tell God all about "what happened" if God can stand still while I talk.////

No we don't control God and God's "control" of us is ours to claim. Perhaps the word "Control" is not extensive enough. God "is" ... what does it mean to "be" ... Ah, we could wade through a lake of words about God and never exhaust just "how" God beckons us to be controlled by love. The love of God does need the parental "control" to "make" us be good.
Well, just thinking about it ... have a wonderful Summer Day ... we're in the 90's now…beautiful. ////

Anything about Alz for other persons who are likely to "roll in the dust" of Alzheimer's. I'd do anything to help their "shock" or "whatever" in the discovery they've joined that so called 2 million that have Alz ... ///

As I write, I'm also close to the NBC screen... and the conflict/combat in Iraq. somewhat cousins: Iraq/Alzheimer's. Somehow both conflicts are crazy ...///

When I'm with Alz folk, I realize there are all kinds of levels that us Alz folks give up ... for the "cause" ... but it is with energetic anger when I do lose... 'whatever it was ...' 'where did I put that pencil ... But, of course! I'm an 80 year-old and I'm supposed to be "forgetting" .. "now let's see" .. Naw, I do try to focus on my good days rather to gripe for the days when they don't "come together" as I planned .... Wow some poetry in that.///

(A month or so agoin, I e-mailed Paul and told him that I would be speaking at a conference for clergy about Alzheimer’s and asked him if he had anything he wanted to me tell them. He responded 4 times.)

I'm interested to make connection info about Parish's resources for the Alzheimer's needs and their contributions..."they" say that theological ideas or memories are erased via the Alz settlement. Not necessarily. I with my wife still attend our Asbury UMChurch (my wife does do all the driving) but my mental apparatus is OK for most things necessary to make the day's expectation.

Well, I'll not again mount the pulpit, but I'm a good listener and converse one on one ...and we have a small group interested in the "Theological Aspects of Alz." What my wife and I are finding in our local Alzheimer's Group Sessions in KC Mo, a company who understand ...a place to "tell it like it is." companionship and friendship ...Our leaders are "set" to do some writing about Alz and how we're confronting it.////

I'm 80 years ... Having to ask for help... in any way... is not my "cup of tea" I do think especially for males... "I don't want help, I'll do it my self..."has been a measure of maleness, independence, and "I'd rather help you!!"
All through my life... a male ... "he can do it" "of course he can help" ..."Poor guy, HE can't "make it" anymore .." and HE doesn't want any help!!

I'm 6'3". Infantry 2 years. Combat France a bit ... inherited maleness from my father's big railroad locomotive .. could tons and tons .." just keep the boiler hot and we'll make it.." and the onlookers .. "You CAN do it" ...

Only girls play the piano ...But I played Beethoven, etc ... and I was somebody ...male musicians "do it well"... music even
I do think there is something to say about male theory... we can't birth a baby ...yep they are seen as the strong one, power, and protection of the woman.... sometimes when we compare the type of strength of the female and the male "little boys don't cry." We have to define just what "strength" is or means. Then we might break meaning and find strength across which bridge we're crossing... war/labor muscle/brain. I think about having a female vs male prison... ie, how we define persecution for what charges...

I'm all over the table with this. I do think what I've got, Alz, hits the man more frequently than female. I'll have to research this a bit...but you are on the issues quite solid ... have to ask what is "power" really?////

If I were approaching the family, and we have had a good conversation, I'd approach the prayer something like this:
Loving God, with gratitude to your servants all, who have provided care during this difficult time. While her loss brings sorrow for us now, we realize she is in your hands. Guide us through the days ahead until we meet her again as we finish our time on earth with your love and guidance. Amen.////

Thanks for your assistance - your suggestion that I write what I did is help for me... took me some time .. And your request! It set me to shape my own death. I've told folk that, when I expire, I want my body to go to the doctors who might look at my insides and get some ideas that could lead to an extensive view about Alz!
But, you know, I got my Dx there in Ohio... have had a wonderful life and I'm 80. I'm sorry to leave a wonderful wife, children, and friends. My Church life has been wonderful...so I can say love. Paul ////

(And Paul’s most recent comments-)

I do appreciate our conversations .... I don't remember if I've answered your note - Let me know and I can extensively about Alz .. I do think I've "graduated" into some level that the memory needs to be "patched up" a bit. Oh MY! Early March, and we're having 70 degrees... but I'm also aware that we could have SNOW .. if ... Paul////

Great to hear from you ... I must say. my Alz is not as severe as some of others .. Guessing I'm going back 3 or 4 years that my Doctor could diagnose .. I do take pills that I think slow the Alz ..

Did I mention we attend Asbury UMC ... pastor there was in my Clinical Pastoral Training class at a local General Hospital here in Kansas -- years ago... I was chaplain-supervisor at an old Psych Hospital around here also ...

Well, I "do and go" with a "little help from my friends..." as the song goes ... Maureen is heroic in her "watch over' me .. she is a former Catholic Sister ... nope I did not shake her out of that tree ... she "got out" before I came along ...

Here in Kansas City... home base ... Can find North .. so no losing my "way" ..I do think your writing about Alzheimer's is a good thing .. "They" say that there are 2 million of us in the US .. ugh!!! How's that for a conference!
Thanks for your note .. anyway I can be of support .. just let me know .. ////

Yep . I'm on the "edge" with Alzheimer's conversations among us - ie that have Alz.... but "they" say there are 2 million folk in USA have Alz ... but around here in the KC area .. I don't find too many ... my wife, Maureen, and I attend Asbury UMCh regularly .. Maureen is a former Sister .. I did not "lure" here away from there .. she was ready some years ago to see the world ... she is a writer for RC and is a SS teacher in Asbury .. well, the pastor there was one of my students in the Clinical Pastoral Training ..

Well, I'm a new 80 year guy... I've not had much of my writing published so .. My ministry has been Pastoral Care so now . "Here We Go ..."

I must say, I've never written for publishing .. even at my UMC Cokesbury Publishing .. See Ya ////

..and Alzzz does erase sentences stored in memory ... I'm enjoying a beautiful day here in a MONDAY in Kansas City .. temp. is in the 60's .. feels like 70's ... Well, in KCMo .. usual ... except.. we are likely to have one of those "Northern" swipe with North wind .. temp goes down and down ... but then, that would be the "last" cold spell ..

Alz "plays" with memory ... Yesterday (Sunday) my wife and I attended Asbury UMC here in KC ... pastor there was one of my students back when I was the Clinical Pastoral Training" at an old Psychiatric Hospital .. here in Kansas .. ah now they have removed the old hospital and replaced it with wonderful new buildings ... I met the new Chaplain there .. Ah HISTORY ///

I'm now 80 .. did I mention that .. and still have my thinker, but the rememberer ... well that's something else ...Paul ////

Ah .. your question ..what do I need that is not provided ...???
I did not intend to avoid this question in past notes ... and honestly, I have thought about what I need ???
Thinking about "Theological Aspects of Alzheimer's" .. Or another approach ... "When the mind is "out" .. where is God?" Simple - people who visit me bring God with them .. and although I may not remember their names .. I'll "know" .. Alz is a "condition". .. God is a "promise" ...well, I'm thinking about this .. and am gathering my "notes" as they come to me that might make a "paper" even a bulletin, or even a book ... Hang on there! Paul

Do you have thoughts about professional practice you’d like to share with your colleagues? Send an e-mail info@PlainViews.org.

Advocacy

Chaplain Jane Mather on knowing when to turn off the chaplaincy switch

Inferring and Assessing our Friends and Family

Assessment skills are basic to professional chaplaincy. Reflective listening, discernment and carefully worded, open- ended questions yield chaplains rich assessment content when we interact with patients and their families. Professional chaplains are paid to put that content to use on behalf of patients. Chaplaincy invites us, within certain boundaries, to develop images and inferences about those with whom we interact. Like well-exercised muscles, the skills used to make assessments and develop plans of care ‘work’naturally in most of our interactions, whether we’re acting in a professional capacity or not.

What happens when, uninvited, we ‘listen reflectively’and infer and assess our friends and families? While it’s unlikely that chaplains will be required to take an oath promising to refrain from plying their professional skills unless requested, the question remains whether chaplains ever breach subtle boundaries when ‘off duty.’Reflective listening can be a relationship-enhancing skill, expressive of respect and dignity. And discernment implies that the listener has an internal means of evaluating incoming messages thoughtfully –and in our business, prayerfully. But in our professional role as chaplains we are called to take the next step –assessment –and formulate guiding questions or counsel based on our evaluation of what is heard. When we take this next step with friends and family, this evaluative process may be perceived as judgment. Are there boundaries of which we should be mindful? Should assessment skills be part of all interactions, or are there times when they might become intrusive? Can assessment cross a line into judgment?

These are questions I have posed to many colleagues. Answers vary without consensus. Some believe that discernment and assessment are at least parallel if not synonymous and can only be thought of in positive terms –the tools of our professional trade and useful skills for daily living. Others suggest that the lines between discernment, assessment and judgment are fine and set not in the listening and the gathering of information but rather what use is made of what is heard. Still others question whether intention dictates the shift from discernment to assessment into judgment. For instance, when acting in the capacity of chaplain, conclusions drawn are intended to be used on behalf of a patient and are part of our acceptable professional judgment. However, in our daily lives when the conclusions drawn from non-professional conversations are used to “assess”(evaluate) anyone other than the listener him/herself, the result becomes judgment. Discernment, on the other hand, listens and evaluates information with the intention of learning something for or about oneself.

These variations raise interesting questions that seem to have moral overtones. As spiritual care professionals hired to listen –sometimes with intent to draw inferences and with them, support the healing growth of patients and their families -- we are first bound by the doctrines of the religious groups that endorse us. Indiscriminate or unsolicited judgment of others is not advocated by any major religious teaching but they all invite discernment. The thin lines that separate and define these concepts might be important explorations for clinical pastoral education and the professional practice of certified chaplains.

Do you have thoughts about advocacy you’d like to share with your colleagues? Send an e-mail to info@PlainViews.org.

Education & Research

Rev. Susan Joy Huizenga on treating a mentally ill patient for the first time

Drugs Anyone?

A dialogue from a Summer 1988 CPE unit at St. Elizabeth’s Hospital:

During the past six years of facilitating a weekly group in our substance abuse unit, I have heard many heart-wrenching stories and seen first-hand what happens when people abuse drugs. Since I am aware that substance abuse is rampant in our society, I am very disturbed that few people seem to realize that one can become permanently psychotic from drug abuse.

Diane's interaction with me left a powerful impression on my mind, one which sticks with me years later. At the time I was almost in a state of disbelief, and recognized how much I had to learn. Since then I've been aware of how much I wish to spare others from similar consequences in their lives.

Looking back, I'm glad I spent the summer at St. Elizabeth‘s, where I fell in love with mental health chaplaincy. Although I did not realize it at the time, a blueprint for ministry was becoming planted in my soul.

Fresh from a lecture on The Pastoral Care of Psychiatric Patients, Suzette stepped out into the muggy air with a feeling of confidence. “Now that I know what to do, I’m going to do it,”she thought to herself. “I can do this,”she said aloud, not sure if anyone was listening.

The muggy air was close with humidity nearing ninety percent. I wonder if it’s always so hot here in August. “Yes,”Suzette mused, “they just told us that Washington D.C. was so unbearable in the early days that politicians received extra pay to suffer through August.”The city was built on swampland, and today it was rather obvious.

Heading toward the aging yet stately building, Suzette wondered who she would meet today. She was certainly prepared. She’d already been oriented to the basics of mental illnesses and treatments. Armed with a religious and spiritual assessment form, she felt ready.

Locking the door dutifully behind her, she found a young woman sitting alone at a round table. “Hi!”the woman said, then quickly asked, “Who are you?”

“I’m Suzette, a chaplain intern. What’s your name?”

“I’m Diane. Look at my nails. The aide painted them. Aren’t they pretty?”Diane had an eerie, almost permanent smile on her face.

“Yes, they are pretty,”Suzette replied. “How are you doing today, Diane?”

“I’m fine.”She replied, then stared out the window at the bleak surroundings as a faint breeze blew in the window, refreshing both of them with a ninety-degree puff of air.

“It’s sure hot today, isn’t it?”Suzette asked lamely, not sure what to say next.

“My name is Diane. The aide did my nails. Did you see them?”She held them up again for me to appreciate.

“Yes, I saw them. They are nice.”Inside Suzette panicked. What was going on? Now she really did not know what to do.

Nearby, an attendant, an older woman, noticed Suzette’s plight.

“Come here,”she directed Suzette. Obediently following her out of Diane’s hearing, Suzette listened carefully as the attendant got right to the point.

“She’s done every drug out there. Twenty-six years old…her poor mother! It’s such a shame. And she has kids, too.”

Numb from shock, Suzette pondered her own twenty-four years. Nothing had prepared her for meeting someone whose brain was permanently damaged from illegal drug use.

“Is…. is there anything that can help her?”she stammered.

The attendant shook her head sadly.

“Thank you for your help. I really appreciate it.”Suzette tried to be gracious.

Turning back to Diane, she went to say goodbye.

“Goodbye, Diane. I’ll see you another day.”Suzette was hesitant to leave.

“What’s your name?”Diane asked.

“I’m Suzette, a new chaplain intern.”Suzette replied.

“Did you see my nails? Aren’t they pretty? The aide painted them for me.”

Do you have thoughts about education & research you’d like to share with your colleagues? Send an e-mail to info@PlainViews.org.

Spiritual Development

Elaine Chan on not spending Passover alone

A Different Kind of Seder

On the eve of Passover I got a call from the hospital administration concerning a patient who had inquired about a Seder at the hospital. I explained that we were not going to have one and asked for the name and room number of the patient so that I could follow up. For some reason, the information I was given was incorrect. I went all over the hospital but was unable to find the patient. I found a few Orthodox patients but not one of them had asked about a Seder. Finally I tracked the patient down. She was Catholic! Her friend and caregiver was Jewish and did not want to spend Passover alone.

Since I did not know where the closest Seder was being held, I arranged for a tray for the patient’s caregiver so she could join her friend for this important evening. She and her friend were very grateful, especially since the friend was very ill and needed someone to help with her with her meal. And they both clearly appreciated the company.

This sweet and wonderful sharing of a meal reminded me of the custom of leaving the door open for Elijah at a Seder. As a Roman Catholic I am also reminded of the presence of the Lord in the breaking of the bread, sharing communion and Eucharist. I felt God was pleased.

Do you have thoughts about spiritual development you’d like to share with your colleagues? Send an e-mail of any length to info@PlainViews.org.

EthicsWalk

EthicsWalk addresses spiritual care as an ethical enterprise. It explores why relationships between spiritual care providers and those they serve need protection, and examines what that protection entails. PlainViews invites our readers to share their responses to each EthicsWalk column, which will be published in the following issue.

If you’d like to respond to EthicsWalk, please send a comment of no more than 100 words. You can use the e-form below (click on "hearing from you," link) or submit your commentary to the editors in the body of an e-mail (or as a Microsoft Word attachment) sent to Info@PlainViews.org. Please put the phrase “EthicsWalk” in your subject line.

We look forward to hearing from you.

Re-Focusing on the Patient: Response to CaseConference #7

A twelve-year-old boy diagnosed with autism is the focus of CaseConference 7#. Or, the boy should be the focus. He is not. The case presentation, reader responses, and resolution focus on “supporting”everyone except the boy: his physician, his family, their religious advisors. Perhaps the assumption is that by addressing the various adults’professional, emotional, and religious concerns, the boy will benefit, albeit indirectly.

The case is presented as a dilemma in supporting a physician’s “professional integrity”and assisting a hyper religious family. Where is empathy and concern for the mentally compromised child who is the patient? Where is commitment to discerning and advocating the patient’s best interests, which lies at the heart of “doing”bioethics?

The physician and chaplain permitted the family’s church leaders to shape the issue as “religion.”It is not. “Holy Mother”asserts no religious principle or eternal consequence for medical action or inaction. (unlike the Jehovah’s Witness cases where authorizing blood transfusions for one’s child is contrary to church teachings and done at the spiritual peril of both parent and child).

The real issue is competing diagnoses and treatment plans. The conflict is between the diagnosis and treatment plan of physicians and the diagnosis and treatment plan Holy Mother received in a vision. Religion is a red herring. As long as it swims, attention is diverted from the care –immediate and long term –of the patient.

The chaplain and physician should have named this for what it is: pressure on surrogate decision makers (the parents) to choose between differing opinions about the treatment of their child. Exploring the physician’s “personal source of spiritual strength and faith”is irrelevant to the medical validity of his refusal to perform contraindicated surgery. The parent’s coming to appreciate that his refusal is based on his commitment to their son’s best interests would be highly relevant.

This case is ripe for a bioethics consult and/or bioethics mediation by professionals trained to perform these services.[1] An ethicist would re-establish focus on the patient, reframe the issues. He or she would articulate the applicable ethical principles: nonmaleficence –not performing medically contraindicated surgery; beneficence –working through and resolving the diagnosis and treatment conflict with the parents rather than passing the child on to another medical specialist; respect for the patient’s personhood and the surrogate decisions maker’s (parents) dilemma in discerning the patient’s best interest; justice –not permitting medical staff and resources to be hijacked and squandered by a parallel treatment modality however well meaning its proponents.

Both the ethics consult and mediation process would interpret for the family the medically accepted treatment norms and best practice standards. Each process would engage them and their supporters in finding space within the norms and practices to realize their hopes and beliefs –but not to the detriment of the patient.

I welcome any comments you might want to submit in response to these articles.

[1] A bioethics mediator would probably meet separately with the medical staff, the chaplain, the family, the Holy Mother with priest, and perhaps the patient. In addition to listening to each perspective, the mediator would, as appropriate, provide education around medical facts about autism, relevant best practice standards, ethical principles, laws regarding child protection requirements (obtaining a medical guardian ad litim might be relevant), and convey to all the sense that each person’s position is informed by their interest in the child’s well being. After these individual meetings, the mediator would likely assemble the entire group to focus on their common commitment to the boy’s immediate and long-term well being. The process of identifying the common interest frequently permits softening of conflicting positions and acceptance of specific, if somewhat modified, medical recommendations.

CaseConference

We post an ethical or situational concern that has arisen in a facility where one of our readers works. It has no identifiers included. It gives you only the facts of the case. Then, you can respond to that concern. This is an ongoing dialogue, with comments added as they come in. In the following issue, assuming it has been resolved, we give you the outcome from the facility where the incident took place. Please send any cases that you would like considered for inclusion to: info@plainviews.org

We hope that this new addition will help to inform not only those who are dealing with the issue, but will enable all of our readers to learn from the experiences and perhaps mistakes of others.

PLEASE NOTE: Due to unanticipated continuing responses to both the case and the resolution of the case, added responses can be viewed in the archives. Click HERE.

CaseConference #7 Resolution

The Chaplain encouraged the physician to look into his own personal source of spiritual strength and faith. This he did. The doctor also spoke of the meaning and value he places on the Hippocratic Oath which he swore to uphold as a healer, especially where he vowed to do no harm.

His faith and his adherence to the sacred oath of medicine gave him the support that he needed to meet again with the family and decline to do the surgery. He spoke of how he honored their religious conviction and he asked them to honor his values in not operating when no cause for surgery was found. They agreed. The ENT physician then referred the boy to a pediatric neuro-ENT.

In making the referral the doctor shared the unique case history with the pediatric doctor.

CaseConference #7

A mother, father and their 12-year-old son appeared for an appointment with an ENT (ear, nose and throat) physician. The family stated that the reason for the visit was their son’s “voice box”was closed; he did not speak. They informed the physician, “The Holy Mother of our Church sent us to you, because you can open the voice box and make my son speak.”

After realizing the boy was autistic, the doctor shared the psychological and neurological nature of the condition with the family. Still the family pressed him to do a CT scan and X-ray study, saying it was foretold that the problem with the voice box would appear on the scan. The studies were ordered. Results of the study were negative, no lesions or abnormalities were apparent.

The results were reported to the family. A few days later the mother, father, the Holy Mother, and priest of the church had an appointment with the doctor. They asked to see and review the X-ray and CT results. The doctor carefully took time to explain how he had read the studies and the reports of the radiologist. He shared the films with those gathered.

The Holy Mother then pointed to a specific slice of the CT films and remarked that she was told by God that in this place he would find a “perisicula”that God would help him to remove and the boy would speak.

The physician knew of no such abnormality. He informed the family that in keeping with his medical oath to do no harm, he could not operate seeing there was no lesion, growth or visible blockage.

The doctor called the chaplain for advice on how to respect this family’s strong religious convictions without compromising his professional integrity.

What might the chaplain do to support the physician?

How could the chaplain assist the family?

Please check the archives below for comments made about the last CaseConference.

Send your comments about CaseConference to info@PlainViews.org.

Reviews

Sarah Masters reviews the audio CD

Salve Regina

The Benedictine Monks of the Abbey of Saint-Maurice and Saint-Maur, Clervaux, France, express beautifully in this CD the layered textures of plainchant. Some of the more easily understood chants of the liturgy are included in this recording. The Abbey Monks chose Gregorian chants with only one or two notes for each syllable of chant and selected hymns composed in different centuries.

The chants range from three appropriate to the Benediction of the Blessed Sacrament, a ceremony whose popularity dates from the late Middle Ages when worship of the Sacrament was separate from Mass, to a chant that is sung during Vespers. Salve Regina provides solemn, serene and spiritually enriching background music for Chaplains in meditation.

Gregorian chant is considered to be church music written in a similar style throughout the centuries, from the early Middle Ages forward to modern times. But David Hiley, author of Western Plainchant: A Handbook, observes that for individuals who absorb the mystery and beauty of Gregorian Chant, there is “infinite variety in a single line.”

Completed: 1987
Running Time: 47 Minutes
Phillips Classics Productions

If you are interested in purchasing this film, you can do so at www.hartleyfoundation.org. Just click on “Sacred Sounds”on the homepage for more information. The cost of the film series is $9.99 for a DVD.

Book Review

Rabbi Dr. David Zucker reviews

Blue Shoe

This novel centers on the messy story about Mattie, in her mid-to-late 30s, divorced, a caring, committed and church-attending Christian woman who is rearing two children on insufficient funds, and having at the same time to face her mother’s initially slow, but increasing and inexorable decline into dementia. It is about Mattie in love, and Mattie, almost against her will unpacking the truth about her late father, a man she idealized, and now she finds to have been very flawed. This well-crafted, well-written book reads like real lives, which often are messy and rarely are orderly.

This is a novel about a family failing, and flailing, and finally coming together.

It is about divorce and single-parenting, adultery, pedophilia, lusting and longing and hope. It is largely about hope.

It is about the long road to dementia, and how grandparents who are supposed to be loving can instead be vacant and lost within themselves.

It is about struggle and search and there are wonderful flashes of wit throughout.

Lamott describes well the understandable ambivalence felt by family caregivers. “Mattie . . . thought of the words of Teresa of Avila, who said, ‘The Lord doesn’t so much look at the greatness of our works, as the love with which they are done,’and this sounded fine except when it came to Isa [Mattie’s mother.] There was so much stuff marbled in, all the memories of their lives together: years of anger and revulsion . . . So she asked herself, If you’re as loving as possible when you’re with your mother, does it count if there are other parts too –hands, for instance, trembling with rage?”(p. 178).

Mattie and her brother struggle with the thought of placing their mother in a nursing home, “this gawky, tremulous woman with a badly pleated memory, working hard to keep living independently . . . cadging coupons so she could pay her own way and not have to ask her skittish children for help.”(p. 182)
As someone whose chaplaincy is centered in Long Term Care, who works on a daily basis with residents and residents’families, I attest to the accuracy of Lamott’s description of Isa, Mattie’s mother, and her uneven slide into Alzheimer’s Disease-like mental illness as she suffers several little strokes, turning her brain more and more into mush. I confirm how Lamott correctly describes the conflicting demands on family life, where and when to opt for a nursing home, all those painful decisions that tear at a family’s hearts and emotions.

This is a wonderful and emotionally difficult book to read. I recommend it highly.

Blue Shoe. Anne Lamott, ( New York: Riverhead/Penguin Putnam, 2002), 291 pp.

Do you have thoughts about these reviews you’d like to share with your colleagues? Send an e-mail to info@PlainViews.org