HAVING WORKED for the past 9 years in a busy cardiac unit, I've seen many patients come and go. Most do well, but some fail to recover as expected. A few of these patients experience a vague, painful distress that can be difficult to put your finger on, harder to quantify, and very challenging to treat. It's almost as if they're being taken away from this world piece by piece until nothing is left, even when the desire to live is strong and no clear physical cause for the decline is apparent.
When all efforts to prevent the gradual slipping away of a once-vital person fail, staff, family, and even the patient ask a simple question: "Why?" I never had an answer-until some 6 years ago, when I met George.
At age 70, George was a relatively healthy Native American male who'd been admitted for chest pain. Coronary angiography revealed significant multivessel coronary artery disease. George underwent uneventful coronary artery bypass graft surgery. Afterward, he experienced expected postoperative problems such as anorexia and pain, but these gradually improved over the course of 4 or 5 days. His weight was stable, and his intake and output were reasonably balanced. He was meeting recovery milestones on schedule; for example, his chest tubes and drains were removed and he was ambulating 100 feet or more four times a day. Postoperative lab work and chest X-rays indicated that George was recovering as expected.
His friends and family visited regularly, but not excessively. He enjoyed the visits, especially the pictures his grandchildren drew for him, and he watched movies the unit had on hand when he was alone.
So we were surprised when George started to look unwell at the close of post-op day 5, at a point when we'd started to consider discharge planning. Instead of getting stronger, he became more fatigued and weak. Every day, he looked just a little bit worse. George seemed to be fading away.
Concerned, his healthcare providers tried to identify the etiology of this failure to thrive, but could find no clinical explanation. He was also evaluated for depression and started on an antidepressant, even though the psychiatrist wasn't convinced George was clinically depressed.
George himself couldn't explain it. He told us he wasn't feeling hopeless or anxious, but he did have a vague, persistent sensation that something was wrong-not physically, but just wrong in general, something elusive and distressful.
Common tribal roots
George's decline was especially distressing to me because, during the time I'd cared for him on the night shift, we'd discovered that we shared the same tribal roots. I felt that this created a closer nurse-patient relationship because we understood each other on a cultural level. Over the course of his hospitalization, I'd spent time talking with him, as I often do with patients who can't sleep. I enjoyed his funny narratives about his dynamic experiences and more traditional stories about tribal life.
In the past, I'd simply accepted that some patients aren't going to make it and one doesn't always know why. Because of my relationship with George, I began to question this accepting attitude.
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I discussed the problem with George to try to understand it better and make a plan to turn things around. He described to me a growing sense of angst but couldn't say why. He described it as a sort of "wandering feeling," or "feeling lost."
As his physical condition declined, we adapted his plan of care, had the hospital chaplain visit, and even accompanied him outside for fresh air and a change of scenery. Nothing worked. His distress over what he himself couldn't identify steadily increased.
One night, after we'd spent some time brainstorming for solutions, George confided to me that he didn't think he was going to make it.
Suffering without meaning
After this conversation, I started to think about a concept I'd studied in nursing school-existential suffering or distress. This type of suffering can be triggered by various events, including illness or any catastrophic experience that lacks or loses meaning for the individual and represents some kind of existential threat.1 Examples include:
* the person's sense of safety, which could manifest as anxiety and fear of the unknown or of death.
* self-image, which might result in an altered self-identity or a loss of identity.
* spirituality, resulting in spiritual discord or disillusionment
* social networks or autonomy, which could result in social isolation, loss of freedom, or loss of independence.
Existential suffering can be so great that patients become depressed or develop physical symptoms without physiologic origins. Some patients simply fail to thrive until death releases them from the emotional pain.
What the event represents to the individual determines the nature of the suffering. Was this, I wondered, the key to helping George?
The next night when I went to work, I was disappointed to learn that I hadn't been assigned to George. Even so, I planned to stop in to say hello. As I prepared to knock on his closed door, another nurse stopped me.
"You can't go in there," she said. "He has a visitor and he asked not to be disturbed." I asked who'd be visiting so late.
"I don't know, but he had a bag of stuff."
I decided to review one of my patient's medical records in the next room while I waited for a chance to see George.
As I looked through the medical record, I was struck by the muffled sound of a rattle. I brushed it off as odd but not necessarily important. Then I heard singing-a man in George's room singing in a native dialect. The singing stopped and I heard the rattle again.
Now I suspected who George's visitor was: a midewiwin, or traditional healer. Midewiwin are in short supply, and I wasn't aware of any in our area. I decided not to visit George after all.
After that night, George began to progressively improve. He slept better, he ate better, and his strength and endurance began to return. He laughed more, and with gusto. Within 1 week of his self-initiated consult, he was clearly ready for discharge.
We'd continued to talk during this time, but I didn't question him about his visitor, feeling it was an extremely personal matter. It wasn't until the night before his discharge that I dared to ask.
George confirmed that the visitor was, as I'd suspected, a midewiwin from out of state. I asked him what prompted him to seek help from a midewiwin. He told me that for him, a midewiwin is someone to turn to when all else has failed. I respectfully asked if he'd thought he was going to die and had called the midewiwin to help him find closure.
He laughed. "No!! I called him because I didn't want closure of any kind!! I called him because I didn't know what was wrong with me. That's what he does."
I then asked him what he thought had finally worked, why he'd suddenly gotten better. He replied, "I wasn't sick because of the surgery. I was sick because I didn't know who I was anymore."
He leaned forward toward me and whispered, "The midewiwin helped me remember who I am."
Healing from the inside out
George was discharged the next day. Since then, I've seen him at community events and he remains well. Because of his successful self-intervention for a condition we couldn't diagnose, he was able to heal himself, in his words, "from the inside."
George taught me that there's more to an individual than what we can assess in quantifiable terms. This "inside" self has a critical impact on health. As part of my nursing care, I now try to understand what the illness or hospitalization experience means to each of my patients. I hope that initiating the dialogue will help them integrate the event into their lives in a meaningful way, so that they don't waste away on the inside while their caregivers are preoccupied with treating the outside.
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Berlinger N. Taking "existential" suffering seriously. J Pain Symptom Manage. 2007;34(1):108-110.
Betts CE. The will to health: a Nietzschean critique. Nurs Philos. 2007;8(1):37-48.
Strang P, Strang S, Hultborn R, Arner S. Existential pain-an entity, a provocation, or a challenge? J Pain Symptom Manage. 2004;27(3):241-250.