Gabriele Tuskegee Summary

7/31/2019 Gabriele Tuskegee Summary

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DISTINGUISHED FACULTY PRESENTATION

In Search of Healing:

Reflections on the Human ExperienceEdward Gabriele, MDiv, DMin

Distinguished Professor

Graduate School of NursingUniformed Services University of the Health Sciences

Bethesda, MDTel: (301) 792-7823

Email: [email protected]

Authors Note

This article summarizes the authors panel presentation given as a response to the ethicsand health care keynote presentation of Dr. Cedric Bright on April 25, 2012 as part of the

Public Health Intensive Ethics Course at Tuskegee University under the direction of theNational Center for Bioethics in Research and Health Care. The opinions in this article

are those of the author and do not represent the views of the United States Government,the Department of Defense, the Department of the Navy, the Uniformed Services

University, and other agencies the author serves.

Introduction:Establishing the Reflective Framework

There is a certain depth of illness that is piercing in its isolation; the only rule of

existence is uncertainty, and the only movement is the passage of time. One cannot bearto live through another loss of function, and sometimes friends and family cannot bear to

watch. An unspoken, unbridgeable divide may widen. Even if you are still who you were,you cannot actually fully be who you are. Sometimes the people you know well withdraw,

and then even the person you know as yourself begins to change.Illness isolates; theisolated become invisible; the invisible become forgotten.

---Elizabeth Tova Bailey, The Sound of a Wild Snail Eating

I am deeply honored to be here at this powerful public health intensive

educational gathering. The honor is made even deeper by being asked to be part of thisparticular section on the ethics of health care itself, following Dr. Cedric Brights

keynote. All throughout his presentation, I was curious as to what would strike me as a


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fitting response. As I listened to Dr. Brights words, it was if I kept hearing a challengewithin me: Talk about experience. And so, I would like to reflect with you out loud

about what I believe to be the experiences of human illness and human health care. Buthow should I begin? What might be the best cognitive structure in which to frame my

reflections and thoughts?

As an academic theologian, I have always appreciated the 11th

century definitionof theology by Anselm of Canterbury, namely that theology is faith seeking

understanding. Having been in the classroom since 1974 and insisted my students plumbthe depths of what they hear, I try to take my own advice and question what do things

mean. Over the years, Anselms definition has always captured my imagination. Iremember back a few years that I was asked to give a keynote at a conference for data

managers. For that event, I opened my remarks by wondering out loud what in the worldis a theologian doing giving the keynote to data managers. In preparation for that event, it

struck me that one could re-imagine Anselms definition rather poignantly. Faithseeking understanding. Perhaps another way of saying that is: Experience seeking

meaning. Or yet again, when I think of that talk a few years ago: Data seekinginterpretation.

Indeed, theology is not tied to any one tradition of religious thought or

denominational affiliation. In the light of what we might call grace, theology moves usto explore daringly into human experience and attempt to find the meaning of it all.

However, there is a caveat in this. One might assume that, when you dive into the pool ofhuman experience, theology would expect you to come up to the surface with answers.

As any good theological ethicist would remind you, law may give you good answers butethics raises disturbing questions. In point of fact, the search for the meaning of

experience more times than not raises inscrutable and demanding questions. Sometimes,it is enough simply to lay aside the search for definitive answers and allow oneself to

bask in the beauty of the questions themselves. This, I would suggest, is when one movesfrom being a searcher for knowledge to becoming a searcher for wisdom itself.

Hence, as an academic theologian, I offer my remarks today as a series of

reflections on the experience of human illness and the experience of human health care. Itis my hope that my reflections can lead to a type of understanding of the ethos-challenge,

(i.e. the challenge to the fundamental character) that is being posed to health care itself inour day and age.

The Experience of Human Illness

Contrary to misinterpretations of individualism, we realize that the human personis ultimately a relational being. Indeed, as the poet John Donne said it all too well: No

one is an island. Though there are some currents, especially in middle class living, thatwould have us believe we are ultimately separate from one another, we are never

disjointed from our world, from others, or from the diverse parts of our own personhood.


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Our human experience is the experience of connection, of linkage, of social interaction,of cultural bonding, of institutional membership, even of human and global community.

Illness radically affects this.

Whether caused by virus, bacteria, injury, or trauma, illness invades our being and

affects the persons that we are. Reflecting on the simpler example of the experience ofinfluenza, a working member in a family experiences a complete disruption of onesnormal interactive routine. When hit by the disease, ones relationships are ruptured. A

worker must stay away from the office. A parent cannot let children touch her or him soas to prevent the infection from spreading. One is left alone, usually, in a room until the

illness has passed. The regular experiences of human interaction and communication arealtered for the duration. In severe illness experiences such as for harsh trauma or more

serious needs such as surgery, one must leave the relational space of the home and beplaced in the hospital.

In the event of extremely serious illness such as cancers, and when such illnesses

raise up the specter of ones dying, there is an even deeper sense of rupture that occurs:the rupture from ones understanding of the self. In the face of our finitude, we feel

broken off from the experience we normally have of ourselves as thinking, interacting,loving, and living beings. We are faced with the reality that indeed we will not live

forever --- that we are not the sole source of life within ourselves. Indeed, like the quotefound in the start of the above introduction, we enter into an experience of singular

isolation that has few if any analogues.

This sense of relational rupture is actually present in any moment in which weexperience illness. Its impact, though, is felt proportionally. In fact, for those individuals

who claim a particular faith tradition, there is also the possibility of ones feeling arupture with their God. In cases of severe illness, much like the character of Job sitting on

the dunghill, there is many times reported a deep sense of abandonment and silence. Whyhas this happened to me? Where are You who promised never to abandon me?

Our reactions in the face of illness are equally proportional and expected. In the

face of sickness, we find ourselves railing with the poet Dylan Thomas to Rage againstthe dying of the light! Our reactions are multifaceted and processive. Elizabeth Kubler-

Ross, a number of years ago, laid out extremely well the evolution of human reactions tosuffering with cancer. Denial, depression, anger are very much part of our being in the

face of trauma. I would, in fact, suggest that the Kubler-Ross stages are not limited tosevere sickness. They are present in our lives proportionally even in much less serious

moments of human illness. The dis-ease of disease is real regardless of severity.Ultimately the dis-ease is not just physical or psychological. It is deeply personal and

experiential. It is part of our metaphysical nature as human persons. In this sense, the dis-ease is spiritual for it strikes at the root of the human spirit.

With this in mind, how then might we understand the experience of health care?


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The Experience of Health Care

In our contemporary experience, all of us are very much aware that health carelooks to adapting the best business practices to ensure that precious resources are not

wasted. Rightly so, health care leaders and providers want to protect under the principle

of justice that patients receive the health care services they actually need. Reducing costsand increasing service effectiveness are critically important goals, especially in a time ofeconomic strife. Without question, there is a need for solid business practices in health

care so that we are able to offer the finest services for those who come to us for care.However, the common experience of cost and business efficiencies seems to raise up asubliminal or shadow criticism. While health care undoubtedly needs best business

practices to support its real world services, health care itself is fundamentally not abusiness per se. It is a human service.

Indeed, there are some who would suggest that this emphasis on human service

does not have real world substance. Nothing could be farther from the truth. No one

could challenge the need for efficiency. However, the reductio ad absurdum of a solitaryemphasis on business practices is to halt health care itself. That certainly brings the costto zero. Indeed, this is absurd. What is needed is balance and proportionality. While

ensuring that health care delivery is efficient, one must not forget that it must be humanlyeffective. It must bring about healing for which there is no way to calculate cost. But how

do we understand the fundamental effective nature of health care itself? How do weunderstand health care as a human service?

A few years ago, my former superior called me to a meeting. He wanted me to

write a reflective paper on palliative care. However, he told me not to mention hospicecare, or dying, or any of the usual perspectives we associate with palliative care. I asked

him if he knew what he was asking me to do. He said he did. I knew too. I immediatelyengaged in a series of difficult reflections that ended with my being stunned at the

definition of the word palliative as it comes to us from the Latin meaning to cover. Istopped in my tracks. What in the world does this mean? What do we mean by health

care as cover?

My reflections led me almost immediately into a reflection upon some of theexperiences we know of health care that arose in the Western medieval period. In short,

very often the sick would be taken from the local village out to the edge of the townwhere the monastery or convent would be found. We can imagine the sick person or a

family member knocking. The porter, either the nun or monk, would open the door to

take in the sick person. In a figurative sense, the porter would extend a piece of themonastic habit and envelop the sick person into an infirmary place or sick call line. Thehabit was extended to cover with care the one who was sick --- to bear them up and

bring them in close. Again as a type of metaphor, in stunning contrast to the infectioncontrols setting apart from the local village, the sick person was enveloped and

brought in close by being covered with care. They were not necessarily suffering froma terminal disease. Yet they experienced what is termed in Latin as palliation. They

came to experience care as a palliative reality.


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In this regard, we should reflect that palliation is not a particular service for a

particular dire need, but a paradigm for healing. It is a fundamental way forunderstanding the very nature of health care itself. In our own time, a deep consideration

of the prophetic nature of the Palliation-Paradigm is urgently needed. In our work-a-day

world, we are so mired in the concepts of best business practices, that these too ofteninvade us subconsciously that we can think even of human relationships as a type ofbusiness. We sometimes hear our young teasing about the return on investment that

they get from knowing each other. In a 4G world, we look for fast track processes tobring about quick results centered only on quantitative measures. Yet we know

instinctively that human life is not a quantitative phenomenon. Human life is about ourquality of being human and humane in a series of never ending relationships with one

another, with the material order, with ones Center of Meaning and within ones veryself. The experience of illness demands a response of healing that is not just cost-

efficient. It must be humanely effective. Such efficacy demands a posture such as thePalliation-Paradigm where our experience of the dis-ease of disease is covered with care

until resolution or even passing over.

But how might the Palliation-Paradigm be made real?

The Praxis of Healing

A good number of years ago, I had been on the path to becoming a musician. In

fact, I studied music for approximately fifteen years. My pathway from piano to organ toviolin and bassoon, and then to voice and composition was, especially for a very

immature young boy, real work. Sometimes, though I found the practicing to be painful,

something struck my imagination. One time I learned about the opera Faust. In thestory, I remember the scene where Mephistopheles (the devil) seeks to escape from othersdrawing around himself the magic occult circle that was supposed to protect him and let

him get back to his lair. In later years, I remember someone recounting to me fromancient mythology that this magic circle was an appearance in earthly reality of the

corridor between the gates of hell and the gates of heaven. As I was told, it was a place ofutter chaos. I have no idea how accurate is the mythology, but one thing struck me then

and today. As a young boy, I had my share of serious illnesses. In those times, I felt as if Ihad been shoved into that experience of chaos that the magic circle I was told

represented. Today, I have come to understand that the experience of illness is indeed oneof internal chaos. Hence, it seems to me that patients live in that circle of chaos. It is there

that we need to meet them.

Unfortunately, and as implied previously, health care educations goal of teachingclinical objectivity devolves more realistically sometimes and tragically into teaching and

promoting moral objectification. We see the patient in the room. They are in the circle ofchaos. They become for us an object separate from ourselves and even our emotions. We

find it easier to throw at them a pill or therapy. We can too conveniently be tempted towalk away. Walking away is hardly palliative. It is absolutely antithetical to covering


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with care. Something more is needed. Something new needs to be taught. Risky it may bein our fast paced industrial culture, but it is the only way that we can truly make of health

care a praxis of healing, a human experience. We need to learn again the praxis ofpresence.

An ancient Asian proverb says that all of us want to have an afterward. We wantto live forever. From the time we leave the womb, whether consciously or subconsciouslywe fear our solitary pathway. We want to find that some one or some thing that will fill

the lack within as we journey through life. We want that sense of comfort and freedomfrom pain that we knew in symbiosis. And in the symbiotic experience, our inner selves

never doubted that we would live forever. In our infancy, most of us were at the center ofour familys attention as the adorable baby caught up in the fever of delight and beauty.

Granted, we know this is not the experience of all human beings. But it is a commonimage. As we progress through childhood, we are stunned by the parental no. We early

on experience that which is less than beautiful and we shrink from it. We come to knowthe experience of pain. We are confused and frightened when things die around us. How

is our personal formation affected?

Our civilization, in diverse and extremely complex ways, teaches us to avoid andabhor what one of my former professors termed as: the unlovely, the unlovable, and the

unloving. We shrink from the ugly. Eventually we come to fear and loathe our ownfinitude. We become, as in the writings of Ernest Becker, deniers of death. We deny our

inevitable demise and believe the lie that we will live forever in this earthly reality. Alongthe way we become obsessed with eliminating anything and everything that signals our

finitude: physical signs of aging, separating out the elders in our lives, denying theseniors of our associations equal voice. We try, regardless of our age, to adopt the

trappings and language of those younger than ourselves. We refuse to be present toanything and anyone that reminds us of what all must eventually experience and become.

Into this reality, theology calls us to a new praxis - a new and prophetic

challenge of action in reflection. We are called to put aside our denial and enter into thecircle of chaos, but learning to do so without being overcome by the chaos itself. It is

clearly not easy. Learning how to do that takes the maturity and prudence of the wisdomfigures in our midst. Learning to be present is far deeper than a simple physical act. It

is learning to enter into the life of the other such that we are caught up in the flesh of theirexperience.

This is both challenging and exhilarating for those who dedicate their lives to the

care of those who suffer inevitable human illness. The realities of presence demand thatthe health care provider and the health care system itself facilitate ways in which the

physician, the nurse, the chaplain, the administrator, and maintenance staff member cannever forget, as I was stunningly taught years ago in my clinical training, that one most

times cannot cure someone of their illness. But one is always called to be present toanothers pain.


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In this sense, we can understand that the praxis of presence in health care isindeed Cura Salutaris. This phrase means both the care of health and the care of

salvation. Salus, in Latin, means both health and salvation --- not salvation as areligious term, but rather salvation as a form of promoting wholeness! Another Latin

phrase bears this out in a different but wonderfully artistic fashion. Chaplains are called

to provide Cura Pastoralis. This was a phrase used specifically by Gregory the Great inthe early medieval period. Indeed, it is most often translated as pastoral care. But weneed to be careful. Pastoral is also a term used of farming landscapes. It is an earthy

image for tending the soil. Indeed, pastoral care is not just something that chaplains do.It is something that all human beings and all health care providers are called to do: to

tend the agriculture, the soil, of the suffering in sisters or brothers who come to us forcare. The practice of health care demands a recommitment on the part of all to the praxis

of presence. Such a praxis demands that I stain my hands and heart with the wondrousand deep soil of the experience and personhood of those who seek me out in their need.

The praxis of healing demands a lifetime of learning how to be present to someone in heror his pain. That means first I must learn to be present to the pain that is most traumatic

namely, my own.

Conclusion:

A Story

Many years ago, in addition to being an academic theologian and humanist, I wasalso in active Christian ministry. As part of my ministerial duties, I taught high school.

During those years, I was delighted to serve in the school where I myself had beeneducated. The school, very much a neighborhood organization, was a lively place with

close bonds among parents, teachers, families, and students. One of the families I knew

eventually became a type of second family to me. Their eldest son had been a studentof mine. Later, during his freshman year in college, I was ordained. He and his entirefamily were part of the very joyful festivities. However, a few months afterward, tragedy

struck. Jimmy was diagnosed with a facial sarcoma, and surgery was necessary. Theresult was the deformation of a young man who was talented enough to make the varsity

baseball team at his university even in his freshman year. All of us were devastated.Surgery disfigured him and tore him down from the young man who once looked like he

had everything he needed to live forever.

Some months later, during Thanksgiving, Jimmy called me. He wanted to see meto talk. I went over during the holiday. His parents were there, but knew of their sons

need. They went next door to visit friends. While listening to him, I could not believewhat I was experiencing inside me. I had done my Clinical Pastoral Education in a mental

health facility. My supervisor at that time challenged me every single day. He challengedme to remember that I in my narcissism could not cure any of the patients. I could only

learn to be present to their pain. Yet in this moment with Jimmy, I felt caught. Part of mewanted to run away screaming. The other part of me wanted to jump inside his head and

tear out the ugliness. I was caught into being the denier or being the cure-er who hadall the power. And yet there was nothing I could do. All I could do was listen and remain


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still. For those who know me well, being still is hardly one of my virtues! I left at theend of that evening disturbed and angry that I as the older brother type had failed.

A few weeks later, just days before Christmas, Jimmy went to the hospital for

some type of therapy to kill off new cancer cells that had appeared. I was teaching a class

when I was called to the front office. Jimmys Dad begged me to come to the hospitalright away because Jimmy was not going to survive. Adrenalin took over. I raced downthe hallway ripping off my classroom attire to dress for driving to the hospital for

ministry. When I arrived, Jimmy was completely intubated. He did not seem to respond.He was alive but very much the patient. I could only bless him and anoint him with oil. I

felt completely powerless and completely enraged at myself and at my God. Why did thishave to happen to a young man who had it all? Why wouldnt God let me be the one to

suffer? Why?

That evening, I spent time with an open bottle of scotch. The phone rang. It wasJimmys Dad. Jimmy had passed over. However his father described the final scene. You

see, Jimmy actually succumbed to the treatment. It destroyed his red blood cells in hismarrow as well as the cancer. He was young enough that he was fighting death. He was

also young enough that the molecules were feasting through his body like an unbridledbeast. At one point, Jimmys Mom looked at her suffering son. She laid her hands on his

arm and said to him: Jimmy, its Mommy. Im here with Daddy. Jimmy, Daddy and Iwant you to close your eyes and be at peace. For its ok with us for you to die.

That was the night that I learned the real meaning of the word love. That was

the night that I learned what it really means to care for another. That was the night that Ithink I first really learned what health care is really about --- namely, to care for others in

what they need, and not for what I want.

That night is when I truly learned how to cry. ------------------------------------------------------------------------------------------------------------

Author Biography

Dr. Edward Gabriele is the Navy Medicine Senior Healthcare Ethicist directing all policies and

programs in healthcare ethics, organizational systems ethics, and ethics education and formation.

For these areas, he leads all Navy Medicine institutions and personnel across the globe. Until

recently, he served also as the Navy Medicine Executive Research Integrity Officer. An academic

theologian with an extensive record of peer-reviewed publications and visiting scholar

presentations across the globe, for over 21 years he has served as an international scholar in ethics

as well as research administration and management. A celebrated classroom teacher havingserved in all levels of education from grade school to graduate school for over 38 years, he is

today Professor of Clinician Education at Georgetown University Medical Center, and

Distinguished Professor in the Graduate School of Nursing at the Uniformed Services University

where he teaches Philosophy of Science. He is Editor of the Journal of Research Administration

for the Society of Research Administrators International; and Founding Editor of the Journal of

Healthcare, Science and the Humanities published in partnership with the Smithsonian Institution.

He is the Co-Director of the Smithsonian Annual Ethics Education Series.

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