Illness and the Human Spirit

Laurel Archer Copp, Ph.D., DHL, FAAN, and John Dixon Copp, Ph.D.
Laurel Archer Copp, Ph.D., DHL, , is Professor, School of Nursing, The University of North Carolina, Chapel Hill, and John Dixon Copp, Ph.D., is Professor Emeritus, Philosophy.

reprinted with permission from the publisher.
Copyright 1993, Cerenex Pharmaceuticals

Volume 2, Issue 3 Quality of Life -- A Nursing Challenge


It is easy to overlook the intangible when attempting to address quality of life issues. The overworked health-care professional may have become, through necessity, desensitized to some of the seriously ill patient's less physical problems and concerns. This article addresses the ways in which patients' spiritual well-being has been handled in the past and ways it may be handled in the future. Using patients' perspectives and other sources, the role of health-care providers in nurturing, as opposed to undermining, the human spirit will be examined. Also discussed more generally, are the meanings of expressions such as spirit, spiritual well-being, and other similar terms.

We have learned that when we talk of "spirit" in man, we refer to his capacity for going out beyond himself.[1]

Most humans, patients, and nurses alike, are capable of knowing the private world of their own psyche and/or spirit. But most die without having done so. Even when the patient-nurse interaction is "body-centered," the spirit and its relation to the quality of life for giver and receiver of care are of priority value, although behaviors and practice settings might not reveal it. Whether the avoidance of inner development by this dyad, both of whom profess health to be their goals, is innocent or ignorant we may not know. Nurses administer the most intimate, tangible aspects of care, but this unseen world of the spirit is even more intimate and, many believe, more crucial to healing, recovery, and health.

Patients bring with them to the body-care world of the hospital their quest for inner understanding. Although little is spoken about it, much struggling is taking place in this inner, unseen world. The struggle is for context, meaning, interpretation, and absorption of the illness experience. These inner fruits of the illness experience may be reflected upon long after the pain is over, and may have changed, deepened, and challenged the inner life of the spirit.

What and Why Questions

Patients want to discuss these inner wonderings and changes with the nurses, who often flee into the chaos of the clinical setting, or feel they are irrelevant and dismiss them with a mental shrug. Staff understand the "what" questions--"What did the tests show? What is my blood pressure now? What is this medicine for?"

But patients often ask "why" questions--"Why is this happening to me? Why now?" Suffering persons step out into the cosmos and implore, "Why--Why--Why?"

Unfortunately, the staff often attempt to answer qualitative questions with quantitative answers. Consider the dying person, the person who has had a close encounter, or the person who is trying to understand the reality of illness. Illness impacts their body, life, identity, being, spirit. There may be a great pressure to ask these questions, even though, in their wisdom, patients know that only they have the answers--and that they will have to work them out over time. There also may be great pressure to tell someone. He or she wishes to give us inner data, insights, dreams, descriptions, even what we might call hypotheses formed by the spirit. These people are, as we have learned from Frankl, "searching for meaning and the self-transcendence of human existence."

Frankl states:

It denotes the fact that being human always points, and is directed, to something or someone, other than oneself--be it a meaning to fulfill or another human being to encounter. [2]

Sadly, even the most sensitive nurse does not know what to do with these precious needs and data. There certainly seems to be no place on the hospital chart for this information. The nurse may attempt to share it with peers, who may sigh, roll their eyes, and fidget, hoping the shift will soon be over. How then are we to provide assistance which will "enspirit" ill persons and be supportive of their inner journey, which has immediate and direct bearing on their quality of life? How will we facilitate patients' needs to feel, give, and share, and even their need to be supportive to staff and significant others in the very throes of their own torment?

In one of Frankl's examples we see the need patients have to give to one another and the sense of meaning that this provides. Dosia Carlson writes:

After her mother left, I took a long, openhearted look at Florence. What frustration and despair must be plaguing her! How must it feel to spend months in this Intensive Care Unit? If only I could go to her corner or she could come to mine, then I could let her know that I shared her sense of loneliness, and, yes, that I too cared about her and wanted her to eat and keep living. [3]

The spirit of one patient sensitively connected with another. But it was no easy assignment, since both had tracheostomies. First, they began a little ritual of waving. Then Dosia thought to write a note from bed #1 to bed Her spirits soared as bed #16 wrote back! (The ICU nurses were not too busy to deliver what were to be continuing communications by note.)

A postscript: Secreted in a corner of the pristine, not-to-be-contaminated ICU was a bouquet of flowers that had come for bed #1. (The ICU nurses were not too rule-bound to allow this encouraging gift to be present, not underfoot but within view.) When the curtains were pulled for a very long time around Florence, Dosia became anxious. She asked the nurse if she would put the flowers where they could be seen by Florence. Then she waited. Much later, the night nurse handed Dosia a surprise--not a note but a beautiful drawing of those very flowers--for Florence was a professional artist. Dosia writes:

Proudly I showed her art work to all who came by my bed. Now we truly had two bouquets--one in a vase by bed #16 and one by bed #1.

Hope Within Despair

Can there be hope within despair, or spiritual and mental growth even in the midst of mental and physical anguish?

In the basic concepts of logotherapy, Frankl describes the tragic triad of pain, guilt, and death. He strives to point out that it is possible to say yes to life in spite of it all. Although he does not use the term, we see this as congruent with "enspiriting" our patients and they us.

Karl Jaspers[4] speaks of some human experiences as being "boundary situations." Instead of limiting the truth of being and transcendence, humans can encompass beyond what might have been assumed as their horizons. For Jaspers, it is of some interest to note, "Man is Geist, that is Spirit, working the material of life into ideal totalities.[5]

Using Spirit in One's Vocabulary

The word spirit is from the Latin spiritus or breath (note the term "inspiring.") It is used in vastly different ways by philosophers, theologians, and humanists. Health professionals rarely use the word except in two ways.

First, they profess to meet the needs of the whole patient, and they enumerate (e.g., physically, psychologically, spiritually, culturally, economically). It is obvious, however, that claiming to meet any one of the above with appropriate depth may be unrealistic. Although this is recognized, evidently the actual professing is important to us, and therefore the expansive language remains in such documents as philosophy and objectives in schools of nursing and in mission statements of hospitals, hospices, and nursing homes.

Second, we use the word spirit(s) in popular parlance that is common to health professionals, patients, and family on almost a daily basis. Review the following and see what we really mean when we say:

"He is in good spirits."
"Her spirits are at a very low ebb."
"He has lost his spirit."
"She has an indomitable spirit."
"He is very spirited--has a wild spirit."
"She is in high spirits today."

Metzner[6] sharing work from Lakoff and Johnson, speaks of orientational metaphors. They also add an "up/down" dimension to space, as when we describe waking up, or falling asleep, or dropping dead. Let us add to it "my spirits rose."[7]

In our off-duty conversations the word spirit is often included in terms such as free spirit, kindred spirit, evil spirit, mean-spirited, esprit de corpsi, or that's the spirit!

What is this concept we use so often and so casually? It is important to move past the words, the concepts, the metaphors, as important as they are. Move to what? We might also consider spirit as process if we share the belief that some aspect of Man is or relates to spirit. Therefore, nurses, patients, and family members have ongoing abilities to dis-spirit or enspirit one another.

Spirit has also been defined as "energy in its most subtle form: the formless foundation of all consciousness; primordial substance."i [8] Nurses who describe their own fatigue as being "burned out," and patients who are pushed past their endurance might think more deeply about available energy of the spirit, especially in difficult times of interactions, transactions, and relationships between patient and nurse. We will speak more of dis-spiriting and enspiriting below.

The Inner Dialogue

When illness intrudes on any human, trouble takes away the liberty of the spirit. We may be interrupted, put off, or delayed by a variety of inner quests. Most patients who had been making an inner journey before catastrophic illness will continue afterward. For many, as demanding as illness is, the inner work continues, even with pain and interruptions.

Mary Wolff-Salin advises:

Without totally renouncing what has been learned about the requirements of functioning in the external world, the human person needs to get in touch with the requirements of his or her own inner world and calling... and deeper still, with the requirements of relationship with that Other found by going through the depths of one's own being.[9]

Patient assessment is related to the body, and although it may extend to the world of feelings, it rarely addresses or acknowledges that there is much more going on in the patient's inner world. The nurse may conclude that the patient is experiencing spiritual well-being, but only the patient knows whether this is true.

What might be going on in the inner life, concurrently with intravenous and nasogastric tubes, pain, body twisting, and many hours to stare at the ceiling?

The Spiritual

The term spiritual is important to the theist, the atheist, the agnostic, the humanist, and the religious in different ways.

Spirituality means a search for meaning and significance by contemplation and reflection on the totality of human experience in relation to the whole world which is experienced and also to the life which is lived and may mature as that search proceeds.[10]

Macquarrie affirms that "spirituality has to do with becoming a person in the fullest sense..."[1] If we use this definition it is part of what we might call full or optimum health and the quality we refer to when we use the phrase quality of life.

Three Pairs of Spiritual Eyes

Divine truth cannot be known in a never-never world that is all beautifully and sweetly spiritual. Rather, God's spiritual presence works in the. depths of every part of this world, which we understand often to be darkly and tragically physical. [11]

Marshall describes the polarities within us as three pairs of spiritual eyes. Attention to the inner work through what might be called "inner or spiritual assignments" represents growth and integration. Inner and outer consequences of each should be considered.

  1. The first pair of spiritual eyes represents freedom and determinism. Determinism as used here is not the impersonal idea of destiny. But in the first polarity we recognize inner factors, subconscious and unconscious, which are represented in each human choice, counterpointed with free or unconditional promise.

  2. The second pair of spiritual eyes represents individualism counterpointed with a desire for participation, to fit in.

  3. The third pair of spiritual eyes concentrates on being and becoming. Marshall expresses it clearly by saying our "self image should delineate the full form of our life, both physical and spiritual. lt. should indicate the constant values around which we integrate ourselves and find our integrity." [11]

Getting in Touch

It goes without saying that getting in touch with the inner or spiritual life can vary on a continuum from the use of drugs to practicing a disciplined religious life. But there are other intermediary approaches which can touch a person spiritually, making changes in inner and outer behavior.

Hardy [12] includes the following "triggers": natural beauty, sacred places, participation in worship, meditation, music, visual art, literature, drama, films, creative work, physical activity, relaxation, sexual relations, silence, and solitude.

Then, interestingly enough, he adds some factors with which nurses and other health professionals are very familiar. They include: depression, despair, illness, childbirth, prospect of death, death of others, crisis in personal relations. He states:

The state of illness would appear to present the opportunity for the spiritual change to take place, rather than to be in itself the cause. [13]

Sharing similar concerns, as perhaps expressed in the themes of the Archie Bunker television series, All in the Family is its creator Norman Lear. His comments related to societal dis-spiriting read:

Our obsession with numbers, the quantifiable, the immediate, has cost us our connection with that place in each of us that honors the unquantifiable and eternal--our capacity for awe, wonder, and mystery: that place where acts of faith in a process larger than ourselves, prove ultimately satisfying in the fullness of time.[14]

Dis-Spiriting of Individuals

Regarding personal dis-spiriting, any oppression can be dis-spiriting, though some individuals meet the challenge and resist valiantly. Oppression can come in many forms (from the Holocaust--systematic murder, to fatal disease) and is a more anonymous and random killer. It is crucial to note the similarities, insofar as the nursing caregiver may inadvertently be perceived as being in league with "the enemy."

Nursing Practices Which Intimidate

Regardless of the type of illness, there are nursing practices which are dis-spiriting. These are listed below with examples.

  1. Treating the patient as an object or as invisible. Example (wheelchair patient):
    I feel like a UPS package and no one seems to know where to deliver me.

  2. Talking "over and around this object" to trivializing less-than-professional colleagues or self-centered fellow workers.
    Example (cardiac patient with infection):
    The physicians around the bed across from her were talking about Dr. Rudd. They were angry. "He's requiring so much care for.., [she heard her name] he's endangering the life of everyone else in this room," one of them said. [15]

  3. Initiating or participating in the random or systematic dehumanization of others.
    Example (male patient):
    Crisp orders. Quick responses. Their bands busy all about me. They were at my throat, my nose, my limbs, my back. And every touch torture. They were treating my body as if it were a thing that didn't belong to me.[16]

  4. Meeting the patient with obvious distraction, preoccupation, and annoyance.
    One night the intern, who was on 36-hour duty, reeled into the room (ICU) from wherever he'd been sleeping. "My God, what's the matter now! [16]
  5. Blaming the patient for not behaving cheerfully or well, or for not obeying rules or instructions that were never explained or for which he or she had no understanding.
    Example (young female with Gullain-Barre syndrome):
    Within minutes, another nurse came in and said, "All right Sue, now let's raise up." I struggled to move, then I remembered. "I just had a spinal tap. Don't you get headaches if you get up?" "Oh, yes," she answered with alarm. "Get back down!" She's suppose to know what's going on here, I thought. She should have known.[17]

  6. Making the patient wait long periods for the nurse or physician but then urging him or her to hurry when they are in attendance.
    I lie tensed against the cold, huddled inside the bedclothes. Should I see a physician about the pain in my side? Yes. No. Probably inconclusive, how it is with vague chronic symptoms. Tedious and boring, sitting in outpatient departments wasting an afternoon or a whole day getting in and out of clothes in cubicles, waiting to be x-rayed. To be told something I do not want to hear. [18]

  7. Not listening to the patient but then blaming him or her for things as if he/she didn't tell you.
    Example (female patient with Gulllain-Barre syndrome):
    When Sandra came in on Monday morning, I tried to tell her what I needed. She just laughed. "Sue, you couldn't need a bedpan." Then something at the nurses' station caught her attention. "I'll be back in just a minute, Sue." And off she went. Come back, come back! I could feel the impending rush, but I had no control... I was horrified, humiliated, and angered because Sandra had betrayed me. [17]

  8. Failing to consult the patient or urge his/her participation in the nursing care plan as well as the nursing care.
    Example (young pregnant woman with cancer):
    ... so I buried the pills in my hospital plants and after I was discharged I let them rest unused in my home medicine chest. [19]

  9. Blaming the patient for his or her pain.
    Example (male patient):
    When the pain grew intense again, "like some huge grizzly bear" taking him between its paws, he screamed from sheer shock of its sudden violence. "Stop it," two nurses said together. "You'll wake the others." [20]

Pain management is in the purview of the nurse and is an essential component of care, since it is the nurse and patient who face pain alone, in the long hours of the night and early morning. Preparing for the onset of pain is part of pain prevention. [21]

What it is like to be dis-spirited can be described only by those who experience it. Using their own words gives the most graphic picture of their low spirits. They dare not gamble with settings, people, or other factors which threaten to extinguish the spirit.

Nursing Practices Which Enspirit

How interesting it is that we can find so many more examples of negative care behaviors than positive ones. This seems to be true of patients in their self-report concerns and complaints. But equally true is the absence of nurse documentation of examples of enspiriting. We wonder why, since many nurses are enspiriting persons. Perhaps it is a case of undue modesty or maybe the enspiriting or spirit-supporting strategies and behaviors are actions not regarded highly enough when compared with the tangible, high-technology body tasks for which nurses get recognition.

Patients know the difference, however, and our examples of success come from them. Important enspiriting strategies and behaviors include:

  1. Giving encouragement--verbal, nonverbal, even a nod instead of tired mechanical phrases. This is the creative bringing forth of encouragement tailored to the patient and the circumstance.
    Example (cardiac patient):
    Except for the people taking care of her, she heard her name only one more time. Out of blackness, a Chinese. voice. called to her. "This is the year of the lion," the voice said: "And you are a lion and will fight your way through." [15]

  2. Being quietly, professionally confident; someone who may be in the spirit-building process herself/himself. Example (woman with tracheostomy and with polio-damaged fingers that cannot manipulate a call button):
    As the drowning sensation increased, I grasped frantically at the bedrail and began to shake it. Signaled by this rattling noise, the nurse came quickly. By now saliva was dribbling out of one corner of my mouth. Even before I could point to my drooling condition, the nurse understood my distress. Swiftly inserting a catheter into my mouth, she. was able to suction out all the annoying water. Before. returning to her other duties, she explained, "I'm taping this hemostat on your bedrail. Whenever you want me, just bang with the hemostat and I will hear you." Thus, the hemostat, an instrument like blunted scissors, became my one means of summoning help. [3]

  3. Genuine respect for the patient and for the positive efforts being made.
    Example (graduate student with malignant brain tumor):
    Many people said they would be there for me but they weren't. Many people I thought were my friends never came back. But it was that night of crying that Margaret came. She said, "I want you to know I am here and that I will tell you what is happening." She never left me--she is still with us now. [22]

  4. The added much, most helpful then, and as remembered.
    A friend suggested a musical aid: on one side of a tape I recorded loud, fast, rock music, which I played when I was in pain. One can absorb just so many stimuli, and when I concentrated on the music, the painful stimulus was not so strong. The other side, a recording of soft, slow, gentle music. helped me relax when I was not experiencing pain. [23]

  5. Trusting the wisdom of the struggling, withstanding life that is undergoing the experience; protecting his/her space and privacy.
    Example (from a conversation with a child):
    He would just sit there. When I would open my eyes he would squeeze my foot. We would both smile, and I began to have hope again.

  6. Resisting the temptation to be grim and super efficient letting natural, unplanned humor bubble up as a means of quiet, appreciated exchange.
    Example from a personal letter from M. Kallengerg, March 6, 1985:
    As a lay person and as a low-brow, it occurs to me that not enough humor or nose thumbing has been given to the sombre hobgoblin of fear of pain.

  7. Speaking to the feelings and emotions by providing support intuitively.
    Example (woman in the hospital over Christmas):
    A little later, after I'd rested a bit, Judith came back to the cubicle and stood looking down at me, smiling warmly. Gently, she lifted my head and shoulders, cradling me in her full, brown arms with an easy rocking motion. Then slowly, she began to sing island lullabies to me. Her deep, resonant voice was so soothing and caressing. My tears ran freely, releasing much pain and sadness.[17]

    Final Significance

    The final significance of the spirit is the "you" that is in you. It is a summoning of the deeper resources of one's being. This source often goes unheard, both in the noisy, distracting, demanding world of patient care as well as away from that world. It is not only the outer world that suppresses the spirit. The inner messages, heard in a weaker and weaker voice, become easier to ignore. It is only when the spirit of a loved one, the spirit of a patient, the spirit of the unseen breaks through that, we are lifted to new consciousness. ,lust like our patients, it is in times of crisis that we are freshly aware of its wisdom.

    Enjoining the Spirit [24]
    The doctor, skilled and caring, said
    When she had listened, slow
    Across the body surfaces
    "Tomorrow you may go."

    "You heal well, the body's trying;
    You've learned to walk again,
    Cooperate with carefulness,
    Slow steps as you begin."

    "It's wise to think things out ahead
    In precise, reasoned ways--
    All this does sound most obvious
    But there are different days."

    Then, standing straight, still near the bed
    Knowing that 1 too knew
    She said to spirit cast of mind
    "And now it's up to you!"


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    18. Figes E. Wakings. New York, NY: Pantheon Books: 1981:65-66

    19. Lee L. Walking Through the Fire. New York, NY: EP Dutton Co: 1977:20.

    20. De-la-Noy M. Denton Welch: The Making of a Writer. London, England: Penguin Books; 98.

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    22. Blackwell CB. There are Worse Things Than Dying. (Videotape by now deceased student). Chapel Hill, NC: University of North Carolina; 1979.

    23. Cady JW. ear pain. Am J Nurs. 1976;76:960-961.

    24. Copp JD. Enjoining the Spirit. Previously unpublished poem. Chapel NC; 1993.