Privileged Presence

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The story below, She Sang Him His Life, from the book Privileged Presence:­ Personal Stories of Connections in Health Care, captures my sense of reverence for health care.

Palliative care seems to be a place where anything goes. On our unit, the hours are completely open; people come and go as the need; pets visit. Staff pay attention to so many little details of comfort. There’s a tenderness and kindness on the unit that’s extraordinary. By comparison, when I visit someone on another floor, it’s impersonal, and I feel assaulted by noise, unpleasant smells, and a sense of crowdedness.

One night, I arrived for my regular volunteer shift on the palliative care unit and found the staff in a very emotional state. This was not entirely unusual, but I sensed that something special had happened that day. I was right.
A young man, in his early forties, had been on the unit for several days. His wife had been with him almost constantly. This husband and wife were both from the same tiny village in Newfoundland. They had grown up together, become a couple, gotten married, and lived there all their lives. And now this man, her husband, was dying. She knew that the end was near and asked the nurses if she could get into bed with her husband and snuggle. And the answer was, “Of course you can, dear.”

And then the singing started. It went on for well over an hour. This woman, as she cuddled her dying husband, slowly and gently, sang him his life and their lives together.
When the singing stopped, her husband was still alive. She then sang him permission to leave.

Use comments below about stories giving you a sense of reverence working with patients and families.

More is Magic

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I travel through daily life protected by a veil masking the unforeseen that might befall me and my loved ones. Several years ago, the veil temporarily lifted during a single week in December when I experienced a vision problem in my lone good eye, my wife underwent surgery and my daughter, an avid cyclist, sustained a concussion (yes, she was wearing a helmet) requiring a two day hospitalization.

Unprotected, I longed to prevent and control the occurrence of harmful circumstances for me and my loved ones. Throughout history, humans felt this same desire expressed through incantations, prayer, sacrifices, ritual dances, magic and superstitions to ward off the “evil eye.” In healthcare today, this universal need emerges as magical beliefs that “more is better” and “knowledge is power.”

Examples include:

Knowledge is power; uncertainty can be eliminated. Surely more tests lead to greater certainty

Often, multiple testing generates even more uncertainty through “false positives” (an abnormal result when no abnormality exists) or “false negatives” (a normal result despite an abnormality).

An explanation exists as to why I feel this way.

Sometimes with a medical evaluation, uncertainty reins supreme. The probability of developing conditions such as specific cancers, diabetes and heart disease increases with risk factors related to family history, smoking or obesity. Yet, people may succumb to illness for completely unknown reasons. Additionally, symptoms and suffering may exist that modern medicine cannot explain.

Early detection of problems leads to cures.

Although sometimes true, early detection provides no guarantee of improved prognosis.

Don’t just stand there, do something!

Treatments can be ineffective or produce deleterious side effects eroding the quality of life. “Watchful waiting” may at times remain the best course.

As health care tackles reducing unnecessary services (medical services without obvious benefit and with the potential to do more harm than good) we must begin with compassion toward ourselves, patients and their families who, in an attempt to ward off harm, cling to the deep seated magical illusion that “more is better.”

Please use comments below to discuss how you personally and professionally deal with the longing to prevent the occurrence of harmful events.

Wounded Story Tellers II

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Written by guest author Michael Bischoff

David and I recently talked about his post, Wounded Story Tellers.  In that post, David described four types of illness narratives (restitution, chaos, quest, and clinical). David and I talked about another narrative that is related to the quest narrative, but also a distinct story and approach to healing.

Opening narrative

While transformation of one’s self might be a part of the this story of illness, that personal transformation is a part of a larger story of releasing into a larger flow of life. This narrative includes cultivating non-attachment to the outcomes of one’s individual health and life, and an acceptance of mortality as a part of the cycle of life.  Death is seen not as a failure, but a stage in opening, releasing the small self we thought we were into the largeness of life.

Those of us with life-threatening illnesses might be more drawn to this narrative, but this narrative can also be applied to minor illnesses.

While remaining engaged with relationships and healing, this story includes a choice to focus on the quality of one’s presence and a non-judgmental acceptance of the emotions and conditions that arise.

This narrative can be expressed in religious terms, such as welcoming God’s healing power to move through me or in terms of accepting what is and trusting the body’s natural healing tendencies

An example of a statement from the opening narrative could be:

“How long I live isn’t the most important thing to me. Living as fully as possible in the reality of love in every moment is what is most important to me.”

Michael Bischoff is currently experimenting with ways to contribute to community well being from the perspective of a patient with brain cancer.

Michael Bischoff CaringBridge Site

The Cracked Pot

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The Welcome Page of Between Two Waves of the Sea and the post Wounded Healers describe  caregiver (healer) and patient sharing a universal human wound (uncertainty, change and loss are inevitable; love is a choice). Additionally, they describe our “shared human condition.”

In his book The Dog Says How, Kevin Kling, a local storyteller and playwright, retells the following parable that deepens our understanding of woundedness and our shared human condition:

Back in the days when pots and pans could talk, which indeed they still do, lived a man

And in order to have water, every day he had to walk down the hill and fill two pots and walk them home.

One day it was discovered one of the pots had a crack, and as time went on, the crack widened.

Finally, the pot turned to the man and said, “You know, every day you take me to the river, and by the time you get home, half of the water’s leaked out. Please replace me with a better pot.”

And the man said, “You don’t understand. As you spill, you water the wild flowers by the side of the path.”

And sure enough, on the side of path where the cracked pot was carried, beautiful flowers grew, while the other side was barren.

“I think I’ll keep you, “said the man.

Leonard Cohen paints a similar image in the song Anthem:

“There is a crack, a crack in everything
That’s how the light gets in.”

The parable and the song indicate that beauty, represented by flowers and light, flows from our cracks – our woundedness. All humans carry wounds. Each one of us has our share of unique wounds beginning in childhood, and as we mature we accumulate additional unique wounds. These wounds are left by broken hearts, disappointments, death of loved ones, fears and illness. Additionally, we all share the universal human wound: on the one hand, we are born, we age, we experience loss and eventually we die and on the other hand we don’t want to accept this truth for our loved ones or ourselves.

Empathy and compassion flow like water from the cracked pot as we recognize that every human being nurses unique wounds and we all share the universal wound. Shared humanity emerges from our cracks.

Please use comments below to describe your thoughts about shared humanity and woundedness. Please consider using the share buttons to forward via social media or email to your colleagues and friends.

Anything Worth Doing is Worth Overdoing

“ Anything (huff) worth (puff) doing (heavy breath) is worth (wheeze) overdoing (gasp).” I heard these words for the first time at the Chequamegon Fat Tire Festival, an off­road bicycle race in Wisconsin. A cyclist, a man in his 60’s, uttered the phrase as he passed me. I was in my late thirties, and felt humbled and inspired as the older rider overtook me. The words captured what I was unintentionally doing with my riding and running.

If running a 10k was admirable, then a marathon was superior. If riding 50 miles was good, then certainly a century ride (100 miles) was better. If exercising at a heart rate of 145 was recommended, then 155 was preferred. If eating oat bran for breakfast (a 1980’s fad) lowered cholesterol, then a diet consisting of nothing but oat bran would really do the trick (it did—my total cholesterol went to 120 without the use of medications).

If Nordic walking 2 miles a day was healthy, then increasing to 6 miles a day over the course of a few weeks had to be better. I assumed the instructions to increase mileage over a minimum of 8 weeks applied to other people, but certainly not to me. This arrogant assumption resulted in a stress fracture of my hip.

The fracture forced me to slow down and ponder the “more is better” story that I told myself, and that contributed to the “overuse” injury. I realized over the years I used exercise to attempt to out ­run, out­ bike, and, most recently, out­ walk the reality that I was not immune to the passage of time and the randomness of events. Like many of us, I felt restless discomfort and a lack of control in simply living with this reality. Instead, I preferred constant movement, compared to the sublime but frightening stillness of seeing life as it is. I used exercise to avoid the unavoidable: life is uncertain and change, aging and death are inevitable. I know other people who use frantic schedules or acquire possessions to avoid sitting with this truth.

And how often do we use prevention and treatment narratives to try to outrun the reality that we cannot make our lives and the lives of our loved ones completely safe? How often do physicians try to avoid the necessary pain of diagnostic uncertainty by ordering more and more tests that at times generate additional uncertainty of incidental abnormalities or false positives?

I overhear the “more is better” illusion in the snippets of healthcare conversations that permeate restaurants, coffee shops and walking trails. Recent examples include the following:

“There must be a reason I am tired. I only sleep 5 hours per night, but other people do fine with 4 hours. I am going to ask my doctor for another battery of tests.”

“Food labels contain only the minimum daily requirements of vitamins. I take megadoses to be healthy.”

“I know my cholesterol is normal, but I like to get it checked every 6 months—just in case. You know, you can’t be too careful.”

And in my case, the “more is better” approach to exercising created the illusion of control over my health but the reality of a stress fracture.

What do you do to outrun life as it is?

 

 

 

 

Wounded Story Tellers

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I don’t intend to eaves drop on conversations, but it’s unavoidable sometimes in public places. Wherever I go, restaurants, coffee shops, grocery stores, airports or parks, health care stories waft through the air. The snippets go something like this:

My husband was hospitalized with chest pain. He had the “widow maker” kind of plugged artery. Fortunately, they opened it right away…

I have been feeling so run down and fatigued. I think I need to go in for a full physical…

My cancer came back. Fortunately, my oncologist knows about an experimental treatment to try…

My back hurts. I saw the doctor and had an MRI. It showed some wear. I can’t work anymore. I lost my job. I don’t know how we will pay the mortgage. The physical therapy hurts even more. I am afraid my wife will get fed up with me. The pills don’t help…

Today is the tenth anniversary of being cancer free after surgery, radiation and chemo. The experience changed me into a better person. I don’t take life for granted anymore and I am grateful for every sunrise and sunset…

It would be easy to dismiss the continuous hum of these dangling conversations by saying that health care is 17 percent of our economy, so of course the topic will frequently surface. But I wonder if the prevalence of medical stories has more to do with how we all use narrative to make sense of our lives. We understand and relate to events and people by weaving happenings, heroes, villains and circumstances into coherent sequential stories.

The book “The Wounded Story Teller” by Arthur Frank, a sociologist and survivor of testicular cancer, provides insight into illness stories.

Frank describes the need we have to predict and control how our bodies will perform in situations. A few months ago during Flu season, I experienced a trivial problem that illustrated this idea. I developed a hacking cough that would occur without warning as I was speaking or trying to listen to others. Suddenly, I could not trust my body to perform as expected and I needed to set new expectations for my workday. Though irritated, I kept a sense of humor about it and told myself a comforting story – that the disruption was temporary and insignificant.

In contrast, serious illness represents a loss of the personal story and expectations that previously guided the ill person. The central problem becomes how to avoid living a life that is diminished by illness or by the reactions of others to it. Medical stories turn illness from fate into experience and enable the storyteller to create bonds of shared suffering and vulnerability between themselves and their listeners.

According to Frank, each story is unique to the storyteller, while at the same time falling into one of three common patterns: restitution, chaos or quest stories. I would add a fourth – the clinical narrative, when we health care workers act as the storytellers.

Restitution stories

Restitution (cure) stories are the most common narrative. The primary goal is to permanently restore a normal life; illness is viewed as a temporary detour. Whatever happens can only be understood as a necessary step toward the achievable goal of health. Restitution positions physicians and modern medicine as heroes and relegates the patient to the object of that heroism. At their best, restitution stories portray patients as the fortunate beneficiaries of modern medicine; at their worst, the stories depict patients and families as victims of a dehumanizing modern medicine bureaucracy.

These stories reflect the deeply-held longing of some of us, especially in western societies, to use science and technology to explain, control and “fix” lives. The restitution narrative is often useful and accurate in the short term, but fails as a long-term story of life – we cannot outrun the inevitable losses of aging.

My first three examples of overheard conversations represent restitution. In the first, the husband’s life is saved when “they” (physician heroes) open his plugged coronary artery. In the second example, the storyteller assumes that the fatigue represents something fixable. In the example of the cancer relapse the storyteller hopes an experimental treatment suggested by the oncologist hero will restore health.

Chaos narrative

Individuals living in chaos lack a sense of viable future. Disconnected sentences pour out of the storyteller as a rapid-fire jangle of present assaults. This narrative is more common at the onset of a serious illness.

The conversation I overheard about back pain feels chaotic with one misfortune begetting another.

Quest narrative

The quest narrative views the illness experience as an opportunity to transform oneself into a better person through overcoming adversity, re-learning what is important in life and sharing with, and supporting, others who are suffering.

The last example of overheard conversations conveys gratitude for what illness taught the cancer survivor.

The clinical narrative

Consider the medical record as a restitution story told from the perspective of those of us working in healthcare. After prompting patients to tell their stories in a way that we can find meaning (“Please describe your pain. Is it sharp or dull? Did it travel anywhere? What brought it on?”), we capture a portion of the story in words, pictures and numerical data that may to help us discover something fixable, or at least explainable.

As we pursue our own storytelling to identify what we can control, we may overlook the chaos the patient is experiencing, or minimize how the patient feels about losing their personal story and life expectations because of the re-writing the illness is causing.

The excerpt below, describes a clinical summary for my hospitalization in May 2013 for a Transient Ischemic Attack (TIA).

This 62-year-old male noticed the sudden onset of imbalance while browsing in front of the refrigerator… On arrival he displayed staggering gait, inability to tandem walk and perhaps mildly slurred speech. A code 99 (possible stroke) was called. CT scan of the brain and a cerebral Magnetic Resonance angiogram (MRA) did not show an acute cerebral hemorrhage or infarct (stroke). The symptoms improved greatly during the first 3 hours and completely resolved within 12 hours. He was discharged to home on low dose aspirin therapy for presumptive diagnosis of Transient Ischemic Attack.

 Note that the summary is useful and concise for medical purposes, but lacks any trace of what the experience meant for me and how I would need, over time, to tell myself a story that would help me navigate vulnerability.

Please use comments to describe your thoughts about story-telling an illness. How can we strengthen our ability to hear the various narrative themes and help people look at the stories they are telling themselves?