Fragment -- #161

[December 2000 journal entry]

I have come to think in terms of a spectrum with ‘beautiful’ on one side of the spectrum’s middle threshold and ‘ugly’/‘tragic’ on the other side of the spectrum’s middle threshold. Four perspectives on life experiences can be distinguished, two on each side of the threshold. At the far end of the ‘beautiful’ side of the spectrum is the perspective that ‘beautiful’ life experiences are all that is real, with attention to or consideration of ‘ugly’/‘tragic’ life experiences totally eclipsed/avoided. Nearer the threshold on the ‘beautiful’ side of the spectrum is the perspective that ‘ugly’/‘tragic’ life experiences are seen/considered through ‘beautiful’ life experiences, with ‘beautiful’ life experiences being more primary/defining. At the far end of the ‘ugly’/‘tragic’ side of the spectrum is the perspective that ‘ugly’/‘tragic’ life experiences are all that is real, with attention to or consideration of ‘beautiful’ life experiences totally eclipsed/disregarded. Nearer the threshold on the ‘ugly’/‘tragic’ side of the spectrum is the perspective that ‘beautiful’ life experiences are seen through ‘ugly’/‘tragic’ life experiences, with ‘ugly’/‘tragic’ life experiences being more primary/defining. Perspectives on the ‘beautiful side of the threshold encompass all variations of ‘from above’ perspectives. Perspectives on the ‘ugly’/‘tragic’ side of the threshold encompass all variations of ‘from below’ perspectives. I think perspectives at/near either end of the spectrum miss or undervalue substantial life experiences. I think most ‘religious’ individuals and most societal spheres (including but not limited to the ‘religious’ sphere) cluster – in thought if not in experience – around/near the ‘beautiful’ end of the spectrum, with exceptions being nearer the threshold. I strive to live and see from a perspective near the threshold on the ‘ugly’/‘tragic’ side of the spectrum.

Fragment -- #160

[December 2000 journal entry]

From the beginning of my simultaneous educational and existential reconstruction in the early 1970s until the present, I have considered it essential to speak consistently in the increasingly diverse relationships and conversations in which I participate rather than attempt to keep these relationships and conversations separate/compartmentalized. Along the way, I have had to prioritize these relationships and conversations (e.g., the central and non-negotiable status of my friendship with Dr. Korones).

Fragment -- #159

[December 2000 journal entry]

To (re)enter societal spheres is to experience dissonance – existential, moral/ethical, spiritual, political, intellectual, . . . .

Fragment -- #158

[November 2000 journal entry]

What distinguishes an ‘authentic’ community?

1. Being penitent.
2. Being confessional with a strong rather than weak self-image.
3. Being socially engaged/invested in an honorable defeat.

Fragment -- #156

[September 2000 journal entry]

Hope for the Flowers is Trina Paulus’ tale about two caterpillars – Stripe and Yellow – has for many years been ‘canonical’ in our family discussions. The tale begins with Stripe doing what all caterpillars do. As soon as he is old enough, Stripe crawls with mounting excitement to the nearest caterpillar pillar. Those pillars -- rows and rows running to the horizon – seem to touch the clouds. Every caterpillar’s life goal? Make it to the top of one of those pillars. The method? Climb or be climbed. The rationale? No one knows or has time to think about that. Stripe quickly gets used to pushing and being pushed, to kicking and being kicked, to stepping on and being stepped on. There is no authentic communication. Only the outsides of the tangled caterpillars touch. From time to time, Stripe sees caterpillars falling to the ground below. At one point part way up the caterpillar pillar, he is muttering to himself -- “What’s at the top? Where are we going?” -- as he crawls over a little yellow caterpillar. Yellow gasps, “What did you say?” Stripe pauses. The more they talk, the less single-minded Stripe becomes. He wonders to himself, “How can I step on someone I’ve just talked to?” Stripe avoids Yellow as much as possible as they continue the climbing life, but one day she is blocking his only way up. He warns, “I guess it’s you or me”, and he steps squarely on her head. Something in the way Yellow looks at him makes Stripe feel awful about himself – “Can getting to the top be worth that?” He crawls off Yellow and whispers, “I’m sorry.” Yellow begins to cry. She suggests, “Let’s go down.” Stripe agrees. So they stop climbing, convinced there must be another way ‘up’. They decide to crawl down the pillar – a hard decision but the beginning of their search for another way of being. The remainder of the story tells how they pass through their existential cocoons into butterflies -- Yellow quickly and with little hesitation; Stripe eventually but only after being lured back for another aborted effort to climb to the top of a caterpillar pillar.

We have spoken often together as a family about how a single encounter forces Stripe to rethink carefully and radically his values, his goals, his habits . . . to rethink who he wants to be. Stripe and Yellow conclude their only option is to withdraw. We have discussed that it is not so simple for individuals who are resolved to care for the injured and ill, for individuals who are resolved to act consistently with a strong social conscience.

Fragment -- #154

[September 2000 journal entry]

My artist friend Dean recently described an experience that led me to think afresh about the way narratives form and are shared relative to the perspective of the storyteller. Very early one morning, Dean – in his pajamas and robe – let Lady (his black Lab) outside through the front door. Dean was standing on the front porch when he saw Lady dashing away from the house. Dean began shouting over and over, “Lady, you come here! Come here right now!” Then he noticed on the street in front of his house an older woman out for an early morning walk. She froze. Then she turned and fled. Dean had no chance then or later to correct her frightened interpretation. Dean’s narration and her narration of this shared experience are surely different.

Fragment -- #153

[September 2000 journal entry]

Variations to add to the ‘non-religious’ four-tier approach to ‘community’ I take: (1) in the ultimate and most radical experience of ‘community’ (i.e., initiating/demonstrating respect toward strangers and adversaries), strangers and adversaries who remain distant should be distinguished from those who respond favorably to the unconditional gestures of respect, (2) among the individuals found to be extending unconditional gestures of respect toward strangers and adversaries, those who choose to be near strangers and adversaries should be distinguished from those who had no such choice.

Fragment -- #152

[April 2006 journal entry]

2006 was our East TN Appalachia health center’s thirtieth year as a ‘community health center’. The community health center model for delivering medical care was devised in the 1960s as a tactic for fighting the ‘War On Poverty’ President Johnson on 16 March 1964 challenged the Congress to declare. This non-profit and community-led model for confronting the barriers poor/uninsured individuals face re access to primary medical care is one of three ‘War On Poverty’ initiatives still active. The other two – the Peace Corps and Head Start. I recently circulated among our medical, nursing, and administrative staff members a prayer I wrote many years ago about my awakening to the plight of those injured by poverty.

DISTURBED FROM PEACEFUL SLUMBER

O compassionate One, I shy from calling you ‘father’ now that my eyes and ears have opened to your other children – the abused, the displaced, the disabled, the destitute. I had no idea how many and how near are my sisters and brothers who scavenge garbage cans in search for food, who cannot (or need not) read the list of ingredients on food cans, who steal to survive, who wake each day to a violent ordeal. I had no idea how surely my closets, my refrigerator, my diet, my choices for work, my recreation, my morning shower, my education all settle any question about whether I am ‘rich’. I had no idea how entangled my lifestyle is with an economy that carelessly consumes the earth’s resources, that encourages selfish fantasies, that lures impoverished kids with ads holding out impossible dreams, that offers me an easy conscience by pointing to charitable gifts and taxes.

Why had I not noticed the family resemblance with these sisters and brothers of mine? Was it embarrassment? haste? fear? economic prejudice? ignorance of ancient Israel’s prophets? the ease with which I spiritualized ‘rich’ and ‘poor’?

I am without excuse. Endless blows dull these sisters and brothers of mine. I have added to the wind that has blown out the light in their eyes. I have only now realized that the task is not to make them materially rich, yet another form of slavery. No, the task is to make them free -- free to dream, to hope, to risk, to rest, to love, to choose.

May my conscience be disturbed by the loss of dignity ‘getting rich’ and ‘staying rich’ imposes.

May my self endure the teaching of ‘Jesus’ against self-serving values and habits.

May my lifestyle maximize the diversity of individuals who feel welcome in my home.

May my possessions be rid of any thing I value more than “one of the least of these”.

May my prayers express dis-ease with being materially rich.

May my witness encourage a way of being together in which “there is neither rich nor poor”.

Amen

A ‘non-religious’ view of Dietrich Bonhoeffer -- #130

[December 2000 journal entry]

It is naïve to suggest/expect that societal spheres (including but not limited to the ‘religious’ sphere) with conventional traits (e.g., property, debt, constituency, tradition, . . . ) can/will permit or encourage radical (i.e., to the root) inquiry/thinking.

A ‘non-religious’ view of Dietrich Bonhoeffer -- #129

[December 2000 journal entry]

I must identify and root out all vestiges of ‘Santa’ language in my ‘God’ language. I feel in the position of the first kids at elementary school who know there is no ‘Santa’ – what do you do with this realization?

A ‘non-religious’ view of Dietrich Bonhoeffer -- #128

[December 2000 journal entry]

A ‘come of age’ approach to ethics and spirituality is incompatible with the ‘religious’ use of such terms as ‘lord’, ‘king’, ‘shepherd’, . . . .

A ‘non-religious’ view of Dietrich Bonhoeffer -- #127

[November 2000 journal entry]

In a recent conversation with a family therapist, she asked, “So do you just not talk about God?” I responded, “I am very hesitant to use ‘God’ language. My speaking rarely and cautiously about ‘God’ stands in sharp contrast to the casual use of ‘God’ language within the ‘religious’ sphere. I think there is an essential difference between saying ‘I am loving’ and saying ‘God is loving’. What I call the ‘religious’ T/O paradigm (which I defined for her) works/holds for individuals (1) who are ‘normal’, (2) who are distant from tragedy, (3) who face acute pain/suffering far more often than chronic pain/suffering, (4) who will not risk the ‘religious’ T/O paradigm’s offer of security.”

A ‘non-religious’ view of Dietrich Bonhoeffer -- #126

[November 2000 journal entry]

It seems ironic that it takes being radically (i.e., to the root) repositioned outside the ‘religious’ sphere in order (1) to see ‘religion’ for what it is and (2) to find/form an alternative approach to ethics and spirituality.

A ‘non-religious’ view of Dietrich Bonhoeffer -- #125

[November 2000 journal entry]

Using a ‘religious’ method -- the sequence flows from the ‘God’ language characteristic of the ‘religious’ T/O paradigm to a refusal to question the implications of such language to decisions re a way of being based on such language. Using my ‘non-religious’ method -- the sequence flows from reflection on the ‘more’ about being human to reflection on the sort of person to be to living consistently with that sort of being to a ‘God’ language (if any) that is guarded against idolatry and that has metaphorical meaning.

A ‘non-religious’ view of Dietrich Bonhoeffer -- #124

[November 2000 journal entry]

The following quotation comes from an article in Nashville’s newspaper The Tennessean:

Sandy Phillips made an agreement with Brian Kelley when she first saw him just hours after his arrest in the killing of his 13-month-old daughter in August last year. Kelley told Phillips, a clinical psychologist at Cumberland Mental Health Service, that he had suffocated his daughter Erin on instructions from God as a way to bring about the Second Coming of Jesus Christ, who would arrive by sundown. “I said we would certainly see each other tomorrow – in heaven if he was correct or in the Wilson County jail if he was wrong,” Phillips told a jury yesterday in Kelley’s first-degree murder trial. Phillips was one of a line of mental health experts who testified yesterday that Kelley was anything but sane when he suffocated his daughter shortly after midnight on August 15, one day from his own birthday. . . . Kelley may have known that killing was illegal, but he was compelled by his delusion that God had instructed him to kill his child as an Old Testament-style sacrifice -- Farooque (another expert witness, DB) and the other experts testified. “He didn’t think what he did was wrong,” Farooque testified. “He was not able to appreciate the wrongfulness of the act.” . . . Martell (another expert witness, DB) said he came to the same conclusion as his local colleagues – that Kelley had suffered a psychotic breakdown. “It is a disorder that will continue to plague him the rest of his life,” Martell testified.

How does the ‘religious’ T/O paradigm not lead to the end to which Kelley went? On what basis would teachers/preachers within the ‘religious’ sphere – especially those toward the fundamentalist end of the theological spectrum – who uncritically exalt the Abraham and Isaac story referenced in the article as an example of ‘faith’ oppose Kelley’s thought and action without undermining the T/O paradigm itself?

A ‘non-religious’ view of Dietrich Bonhoeffer -- #123

[October 2000 journal entry]

Might ‘God’ be in a way analogous to ‘time’, ‘gravity’, ideas, . . ?

‘the ethical dimensions of patient care’ -- #48

CONCLUSION

Adding to patient care the responsibility of assessing patients’ spiritual wellbeing increases the likelihood that caregivers will often be in a position to share their beliefs and values with patients. Healthcare professionals who interpret the responsibility to assess their patients’ spiritual wellbeing as liberty to look for opportunities to impress their own beliefs and values on patients risk failing to respect or to be truly present with their patients. Pressing their beliefs and values may lead them to prejudge the spiritual wellbeing of patients whose beliefs and values differ from their own. Their attention span may narrow. Their diagnosis and/or management may be adversely influenced. Also, considerable diversity regarding ‘spirituality’ and ‘religion’ is usually found among the numerous professionals involved in a patient’s care. Liberty to impress one’s own beliefs and values on patients would not be restricted to the attending physician. Instead, all the professionals involved in a patient’s care -- including consultants, residents, medical students, nurses, social services personnel, et al -- could assume the same liberty, thus potentially putting patients in confusing as well as insecure situations. In order to guard against disrespecting patients and weakening their trust, caregivers should limit the way they share their beliefs and values with patients to discussions (1) they would summarize in the patient’s chart and (2) the medical team would consider part of the patient’s care.

‘the ethical dimensions of patient care’ -- #47

5. ‘Respect’ as the anchor for assessing patients’ spiritual wellbeing:

‘Respect’ is foundational to effective assessment of patients’ spiritual wellbeing. The root meaning of respect – i.e., ‘to look at again and again’ -- is very vivid. There is very little benefit from attempting to assess a patient’s spiritual centeredness or spiritual distress if the professionals responsible for the patient’s care do not genuinely respect the patient.

It should not be taken for granted that caregivers possess the skill/art of truly respecting their patients. I suspect that many caregivers have been born into and/or raised in fairly conservative religious and social settings. I was. In the religious and social setting into which I was born and in which I was raised, I remember being taught to doubt the motives and to avoid taking seriously the ideas of all others who differed with ‘us’. In time I came to see this instruction as instruction in disrespecting others. Variations on instruction in disrespecting others are implicit, if not explicit, to some degree in virtually all organized constituencies or spheres in our society (including the medical sphere).

‘Respect’ does not mean ‘cater to’. It does mean ‘take very seriously’. This clarification calls attention to the rather complicated process by which the attending physician and medical team work with the patient and family/friends in decision-making.

The following set of questions illustrates the skill/art physicians and other caregivers need in order to be fully informed about and respectful of hospitalized patients who are experiencing spiritual distress:

1. “What makes for a good day for you?” – with attention given to how ‘good’ is described
   
   
2. “What are your difficult days like?” – with attention given to how ‘difficult’ is described
   
   
3. “Do your good days help you make it through your difficult days?” – with attention given to indications of how firm a ‘yes’ is and whether the good:difficult ratio is diminishing
   
   
4. “Do you more often find yourself waking up in the morning hoping for a good day or hoping not to have a bad day?” -- with attention given to how encouraged or discouraged the patient is
   
   
5. “What do you want me to know as I and the team consider how best to take care of you? – with attention oriented toward acceptable or unacceptable outcomes rather than toward management plan details
   
   
6. “What outcomes do you want to keep fighting for?” – with attention drawn to feasible outcomes
   
   
7. “Are you concerned that your illness will interfere with your participation in any activities or events in the near future that are especially important to you?” – with attention given to what demands these activities or events would make on the patient, to how feasible it is for the patient to participate, to what condition the patient hopes to be in at the time of these activities or events
   
   
8. “Do you have any questions or worries that are hard to talk about with your family or friends?” – with reassurances that such can be discussed with you in complete confidence
   
   
9. “Patients sometimes tell me they find themselves thinking ‘that would be worse than dying’. Have you had this thought?” – with attention given to what such conditions would be
   
   

‘the ethical dimensions of patient care’ -- #46

4. Defining/distinguishing ‘spirituality’ and ‘religion’:

I suggest that caregivers begin with this premise – i.e., all individuals are more than the insights made possible through various empirical analyses. In the health care sphere, this premise implies that patients are more than potential or actual illnesses and accidents; professionals, more than highly skilled scientists/technicians. To consider this ‘more’, a vocabulary and a manner of discourse -- in addition to scientific/clinical language -- are required. I have found that most (perhaps all) individuals have, with varying levels of sophistication, such vocabulary and manner of discourse. Such vocabulary and manner of discourse disclose, in the most elemental and inclusive way, each individual’s spirituality. An individual’s spirituality reaches, shapes, and sustains his/her integrity (i.e., wholeness, oneness, character).

The definition of ‘spirituality’ that has worked well over the years for me in opening discussions of this subject with health care professionals is:

‘Spirituality’ has to do with the sort of person a patient is, with the basis upon which her life has integrity and balance. A patient reveals her spiritual identity when she shares her core beliefs and life values and when she explains how she sustains these beliefs and values. Feelings of fear, loneliness, and guilt as well as happiness, contentment, and wonder are windows into a patient’s spirituality.

Some caregivers may question the absence of the word ‘God’ or a reference to a divine transcendence in this definition of spirituality. This definition represents an attempt to define spirituality so as to minimize the risk of eliminating individuals as ‘spiritual’ by definition. I strongly recommend against making either a reference to a divine transcendence or a claim of experience of/with a divine transcendence prerequisite to being considered ‘spiritual’. Instead, the transcendence that, in my judgment, is prerequisite to a fully inclusive approach to spirituality is the human spirit (i.e., the ‘more’ about human beings for which empirical analysis/explanation alone does not account). I am proposing (1) that this transcendent realm is present in/with all patients and (2) that this transcendent realm is very relevant to empirically-driven health care professionals who are expected to assess their patients’ spiritual wellbeing. With this transcendence – i.e., the human spirit -- in common, patients experience and express their spirituality in ways special/peculiar to each one (including but not limited to those who interpret their spirituality in terms of experience of/with a divine transcendence).

The definition of ‘religion’ that has worked well over the years for me in opening discussions such as this one is:

‘Religion’ has to do with the way many patients experience and express their spirituality. They center their lives on worshipful devotion to ‘God’ as a mystery that transcends human beings and the world. They are encouraged in their communities of faith to live this way through the study of sacred writings, the affirmation of core beliefs and life values, the sharing of inspirational stories, and the celebration of special rituals.

Some caregivers may express concern that this definition of religion is decidedly institutional in wording. There are certainly less institutional ways to define/nuance ‘religion’. However, in order to meet the Joint Commission regulations for assessing patients’ spiritual wellbeing and in light of the likely assumptions many caregivers hold re ‘religion’, it seems to me that an institutional definition of religion accomplishes the primary objective of distinguishing religion as a subset of the larger phenomenon of spirituality.

I suspect that a significant number of physicians and their support staff as well as most of their patients are more familiar with the following association of spirituality and religion:

‘Religious’ subdivides into --
‘Spiritual’ (a favorable assessment according to the particular religion’s criteria)
‘Not spiritual’ (an unfavorable assessment according to the particular religion’s criteria)

rather than:

‘Spiritual’ subdivides into --
‘Religious’ (in experience and expression)
‘Non-religious’ (in experience and expression)

The definition of and approach to spirituality followed by a hospital, in a clinic, and by a medical team need to be inclusive of all the patients for whom care is being delivered. Not all patients are religious. Not all patients are affiliated with a particular religion. Not all patients are members of any one sub-division of one particular religion. And crucial non-religious aspects of every patient’s spirituality are missed when ‘being spiritual’ is viewed as interchangeable with or a subset of ‘being religious’. Concerning these missed windows into a patient’s spirituality, here are some examples:

a morning/evening walk
participation in community/civic organizations
a refreshing hobby (e.g., photography or gardening or hiking or . . .)
participation in volunteer community service activities
reminders of life-changing experiences
travel opportunities
inspiring music
the company of a pet
a thought-provoking book
a favorite art gallery or museum
social pleasures (e.g., a glass of wine or a pleasant dinner or a theater outing or a sports event or . . .)
a special friend

‘the ethical dimensions of patient care’ -- #45

3. Understanding a patient’s spiritual distress:

The root meaning for ‘distress’ has to do with pressure, strain, . . . . To be distressed, therefore, is to be strained, tense, troubled, oppressed, threatened.

‘Spiritual distress’ has to do with the loss of peace, joy, hope, and resolve individuals experience (to varying degrees) when faced with unsettling life circumstances that threaten to overwhelm their core beliefs and values.

Responses to respiratory distress may range from ‘observe closely’ to ‘intensive intervention’. Caregivers are trained to think in terms of the least invasive/intrusive means (i.e., ‘do no harm’) to resolve a patient’s problem. The response to an asthmatic patient who is wheezing should be less intensive than the response to an asthmatic patient who is listless. The intervention should match the level of concern/danger. Caregivers should have an analogous framework by which to assess a patient’s spiritual wellbeing. Visualize a diagram with two paradigms – i.e., ‘spiritually centered’ and ‘spiritually distressed’ – separated by a threshold. Variations of the ‘spiritually centered’ paradigm range from ‘thriving’ to ‘holding’. Variations of the ‘spiritually distressed’ paradigm range from ‘troubled’ to ‘despairing’.

<-- ‘Spiritually Centered’ -------------|-------------‘Spiritually Distressed’----->


<--‘thriving’------------'holding’ ------|------‘troubled’ -----------‘despairing’-->


Caregivers cross a threshold when the paradigm or framework that most fully accounts for their observations about a patient shifts from ‘spiritually centered’ to ‘spiritually distressed’.

Patients who are spiritually centered are capable of participating meaningfully in the decisions about their care and can be counted on to be diligent in fulfilling their responsibilities. Some of these patients may appear to be undisturbed by their condition. They come across as attentive, hopeful, and self-confident. They ask insightful questions, make accurate comments about their condition, and have a sense of humor. Other of these patients may be struggling to maintain their balance and focus. They show signs of being fearful, upset, disoriented, and impatient. As these dispositions strengthen, they are moving toward and may eventually cross the threshold into the ‘spiritually distressed’ paradigm.

Patients who are spiritually distressed complicate the decision-making process and the management of their care. Some of these patients are troubled for inward as well as circumstantial reasons. They are losing confidence, motivation, hope. They may appear despondent or panicky. They may deny the reality of their situation. Other of these patients are despairing. They are immobilized, depressed, apathetic, fatalistic. Their spiritual distress may surpass in urgency their injury or disease. Professionals with special training for such situations (e.g., social workers, psychologists, chaplains, ethicists, . . .) may need to be more central to the medical team’s care for these patients.