a needy character

I've been off the grid for a couple of weeks because I've been downsizing and moving. This process taught me a couple of things I'd like to share with you.

I learned to ask for help…putting furniture together, setting up a new internet server, installing electrical fixtures, lifting and carrying…the list goes on.

Retro-Fans Blog

But, asking for help isn’t easy for me. I don’t like to inconvenience people or burden them when they already have more to do than they can handle. I feel better about myself when I know I can manage on my own. And, I’m never sure who to call. Who’s reliable? Honest? Thorough? Nevertheless, because I’m pretty helpless when it comes to hi-tech changes and to mechanical and electrical upgrades, I had to ask for help.

Then it struck me.

For over thirty years, I met day after day with people who had turned to me for help. I was a healer, a pillar of hope for them.

If you’re a health care provider, you know what I’m talking about. Our patients’ health and well-being are at stake. Sometimes their survival is in our hands. They come to us with heart disease, cancer, broken bones, depression…unable to care for themselves. They need the help of an expert, someone who is careful, compassionate and wise, but they don’t always know who to turn to. Imagine what it must be like for the woman who discovers a lump in her breast. For the parent whose child can’t breathe. For the trucker having dizzy spells. Imagine not knowing what to do or who to call. Who you can trust. Who you can depend upon.

When I moved I was anxious about calling for help just to install a kitchen fixture, assemble a desk and repair an appliance, trivial matters compared to one’s health. Nevertheless, it was a huge relief when family members, friends, and friends of friends responded promptly. Every single one of them was happy to lend a hand. Total strangers treated me with respect and kindness.

I would consider myself a success as a physician if I could be as cheerful, as skilled, as attentive and as considerate as the people who helped me when I needed them this week—the plumber, the electrician, my new neighbors. My friends. My family. All of them ordinary people acting with extraordinary character.  

jan

           

why we need to hear your story

True story:

Almost twenty years have passed since I was sued for malpractice. 

www.akosmed.com

It was a classic case of a “missed diagnosis”—colon cancer in a young woman with no personal or familial risk factors for the tumor. In her case, it lurked just out of reach of the flexible sigmoidoscope, back in the days when flexible sigmoidoscopy was considered the standard of care for young, low risk patients with minor rectal bleeding. In this population the most likely culprits were hemorrhoids, fissures or small inflammatory polyps. Colonoscopy was considered overkill in cases like this. It was expensive and insurers were reluctant to cover it. Out of pocket expenses for the patient could run into thousands of dollars. In addition, it entailed the risks associated with anesthesia and perforation. 

So I performed a "flexi" on her.

I felt confident in my skill and thoroughness when I explained to the patient that she did, indeed, have internal hemorrhoids which were the likely cause of her bleeding. Nevertheless, I gave her careful instructions to follow up with me for further evaluation if the bleeding persisted or worsened. In fact, I provided her with three test kits to run at home for what is referred to as occult bleeding—blood in the stool you can’t see but can test for. In either case, she would need a colonoscopy.

I never heard from her again. In fact, her name never came up until two years later when I received an official summons that began: “YOU HAVE BEEN SUED IN COURT.” 

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By then, she had undergone surgery, radiation, and chemotherapy to no avail. She died after a long, painful struggle with the disease, leaving behind three teenage children and her husband.

To make a long story short, the case was settled out of court with the help of a topnotch expert witness. Serendipity may have been on my side as well. Before he went into malpractice law, the prosecuting attorney had been a friend of mine. We attended the same church, our children played sports together, and we had entertained him on more than one occasion in our home. I have always wondered if he went easy on me. Fortuitously, the day of the deposition, he was suffering from a back injury making it impossible for him to grill me for ten hours without food, water, or bathroom breaks as was his customary practice. My malpractice carrier handled the out-of-court settlement. Things could have been much worse for me.

But that’s not the point of this story.

The point is this: my patient’s fate found a permanent home in my heart. Today, for example, I thought about her when I drove to a nearby state park and hiked the lakeside trail through the woods…under a ridiculously clear blue sky, in the warm sunshine, against the gusty wind. I think of her when the snow falls, turning the world soft and silent. I think of her, her children and her husband on the very days I am most grateful to be alive. I am reminded that she’ll never enjoy another sunrise at the beach, another sip of wine or another good strong cup of coffee. She didn’t live to see her grandchildren come into the world...

...which probably explains why, twenty years later, her spirit lives on in my heart. Whenever I feel gratitude or joy or pure pleasure I think of her and all that she has missed. It never fails. It keeps me mindful. It keeps me humble. It makes me sad.

That’s my story. What’s yours? If you are prompted to share it with us, you can use the comment field below, or contact me and we’ll work something out.

 jan

never underestimate the healing power of storytelling

This week I came across an article in Psychology Today (you can read it here) that alerted me to yet another show-stopping demonstration of storytelling as a healing process.

www.cops.usdoj.com

It told about an elderly patient with dementia who had become increasingly confused and combative at home. When her condition deteriorated following a fall, her family took her into their home to care for her. Then, following a seizure, she was hospitalized and underwent a battery of tests including blood tests and brain scans that frightened and confused her. She experienced hallucinations that intensified her fear. Because she didn’t understand what was happening to her, she created a narrative in her mind that made sense to her. She convinced herself she was the victim of terrorists, and that she was being tortured. She became increasingly fearful and angry with her family because she believed they had allowed it to go on.

Instead of trying to convince her she was wrong, the family offered her a different story to explain her situation. Instead of taking offense at her accusations, trying to change her behavior, or medicating her, they created an illness narrative. They helped her understand that she had a disease called Alzheimer’s that was causing her confusion and forgetfulness. They reminded her of her fall and the seizure, and what tests she had endured. Little by little it all started to make sense to her and her anger and fearfulness subsided. Once she understood what was happening to her, she was able to accept her family’s care and to make peace with her prognosis.

www.quoteaddicts.com

The authors conclude:

“A narrative is a powerful thing. A narrative not only makes sense of the past, but also allows one to see the self in the future. The problem is that we all know the future of the Alzheimer's narrative: gradual decline and the expectation of future difficult episodes. We know that we will have wonderful moments as well. Having this narrative, even with the known end to the story, has been a blessing. The narrative provides an understanding and a feeling of resolution. In addition, this shared narrative improved and repaired our damaged relationship.”

Never underestimate the healing power of storytelling.

www.firstcover.com

jan

plot points in retrospect

There is some truth to this observation:

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We were reminded of this last weekend as we commemorated the lives that were lost as a result of the terrorist attacks of 9/11. I was at work that day so it was hard to keep up with events as they unfolded and reality set in. You probably remember exactly where you were and what you were doing that day, too.

The same is true for many of us when the space shuttle, Challenger, exploded. I was in the drugstore, at the checkout when I heard the news. When we learned that President John F. Kennedy had been shot, I was sitting in 9^th grade algebra class.

Some memories stay with us because they are tragic, some because they are inspiring, or funny, or scary. Some moments in time stay with us for reasons we may not understand while others are lost forever. One hectic day blends into another until whole blocks of time fade from memory. All we know of our past are the moments we can recall.

A lifetime in medicine is no different. The years we dedicate to patient care—the unending procession of patients, the emergency admissions, and daily hospital rounds—leave us little time for reflection. We don’t purposefully commit each day’s events to memory. Nevertheless, some moments survive as vivid images that flash back to us uninvited years later, each one a glimpse back in time, back into the story of our lives.

Here are a few moments in medical practice that are forever chiseled into my psyche:

•  A gentleman presented to the office with chest pain. His wife was seated next to him in the examination room as I placed my stethoscope on his chest. Suddenly, as I listened, his heart simply stopped beating. He slumped to the floor as his wife looked on. CPR failed to revive him. His story ended that day, while his wife’s story changed forever.

• A “Code Blue” (cardiac arrest) summoned us to Labor and Delivery where a young woman had hemorrhaged following the delivery of a healthy baby. Her story ended there while, waiting in the visitors’ lounge, her husband poured himself another cup of coffee in joyful anticipation of the birth of their first child.

• A patient was admitted through the emergency room for what was described as an unsuccessful suicide attempt. He thought he’d ingested rat poison from an unlabeled bottle in his garage. Instead, it turned out he’d actually swallowed sulfuric acid. Rat poison ingestion is treatable. Sulfuric acid ingestion is not. He was placed in a medically induced coma as his mouth, throat, and esophagus disintegrated. Life support measures gave friends and family just enough time to say goodbye before the doctors pulled the plug. His depression came to an agonizing end that day, while theirs was just beginning.

www.corticare.com

Looking back, I don’t remember how any of those days started for me. I forget what happened later on. But I do remember the look on his wife’s face when that first patient slumped to the floor. I remember watching the young woman’s husband cradle his newborn baby in his arms as the doctor explained what had happened to his wife. And I remember keeping the suicidal patient alive, if unresponsive, while his family confronted the unthinkable tragedy that, in fact, ended his life.

Oh, I could go on.

If life is a story worth telling, these are the plot points that change the story arc. 

www.chiseledinrock.blogspot.com

They have the power to turn comedy into tragedy, reality into mystery and hope into despair. 

Where do these memories hide, and why do they return?

Do long-forgotten memories ever intrude upon your thoughts? What triggers them? How will you use them to tell your story?

*

 jan

a conversation that matters

True story:

Just yesterday a friend and former patient of mine stopped me after church to tell me how much better she was feeling since my husband—the consummate family physician—had seen her at home the previous Sunday. It's true. He made a weekend house call even though he wasn’t on-call that day.

She’d been suffering from incapacitating neck pain and headaches for a couple of weeks, but hadn’t called my husband about it because she was in palliative care for an oppositional defiant malignancy that nothing could stop. She didn’t call him about the pain because her oncologist and hospice nurse had already called in prescriptions for narcotics that hadn’t touched it. She understood the concept of palliative care to mean that nothing more could be done for her so she assumed the pain was part of the process.  

Nevertheless, even though her specialists were not treating the cancer anymore, the goal of my friend's medical care was to keep her as comfortable and functional as possible, for as long as possible. I reminded her that incapacitating pain is not considered by most patients to be comfortable. When a patient who is otherwise still independent becomes housebound because of it, she is not really functioning. She deserved to be treated for the pain.

Her husband was the one who finally called my husband who then took time out of his weekend off to listen to her story and examine her. Based on what he found, it was apparent that her problem was muscular. It had nothing to do with the malignancy. After one day on a muscle relaxant and low dose steroids, the pain subsided. She slept through the night for the first time in weeks. And to her relief, the pain has not recurred, which explains why she was able to get to church this weekend. Why her appetite came back. Why she was smiling despite her generally poor prognosis.

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Rita Charon, in her ground-breaking book, “Narrative Medicine—Honoring the Stories of Illness,” presents an unconventional approach to gathering information from the patient. She simply invites the patient to “tell me what you think I should know about your situation.” Then she listens. She doesn’t scribble down notes or tap away at her keyboard while the patient is speaking. She listens.

Had my friend’s oncologist or nurse used this approach, I think she would have told them, “I’m having severe pain in my neck. I can’t move it when the pain comes on. Then I get a severe headache. It’s so bad I can’t leave the house. I can’t eat. But they said nothing more could be done for me so I didn’t want to bother you about it." 

That miscue resulted in weeks of unnecessary suffering for a woman who had already suffered enough.

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“Be brave enough

to start a conversation that matters.”
~Author Dau Voire~

jan

primum non nocere

I learned something new today. This is a good sign because some people like to joke about my incipient dementia. At least, I hope they’re joking.

I was toying with the topic for today’s post when the phrase “primum non nocere”—first do no harm—came to mind. I learned that the Hippocratic Oath is not its source. It actually comes from Hippocrates’ writings in “Epidemics”: “The physician must…do no harm.” These words are the bedrock of medical ethics and practice. Hippocrates is regarded as “the father of medicine” for good reason.

In fact, many of the traditions that influence the way we practice medicine today were passed down to us by men. Not because women were excluded from the practice of the healing arts in ancient Greece. On the contrary, women were highly respected as physicians and healers. Even Plato held them in esteem. Though they were few in number, patients sought them out. They were regarded as the “wise women” of the community. Their “soft hands” were considered to be “healing hands.”

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But as the science of medicine advanced, the feminine ethic lost credibility. Its wisdom and power to heal were dishonored in favor of dispassionate technical expertise—testing, procedures, and proofs. Today speed and efficiency reign, and reimbursement issues drive the system. Over time, tradition has suffered. As a result, patient care has suffered, and even physicians have suffered.

One of the time-honored traditions that survives today expressly prohibits the physician from entering into a personal relationship of any kind with his patients. This, of course, is an impossibility. It disavows the emotional intimacy that is the inevitable fruit of shared suffering. It contradicts the compassionate physician’s experience and denies him a powerful tool.

Today, the physician is taught that it is unprofessional to share personal experience, insight, beliefs or values with the patient. This rule of non-engagement is hammered into our heads during training when we’re still easily moved to empathy, at a time when connectedness with other human beings is still something to be desired and defended.

Sadly, this means that patients may know more about their hairdresser or mechanic than they know about their doctor—the person they trust with their health and their children’s health. With their lives. Most patients know nothing about him but what they can gather from the plaques and certificates displayed on the walls in his office—what schools he attended, when he graduated, what honors he earned…which speaks to his intelligence but what about his inspiration, his motivation, and his conduct?

This can be troubling for patients. They have little choice when it comes to selecting a physician and, except for the credentials hanging in his office, they may know nothing at all about him. They worry about it, and they should. Is he competent? Is he caring? What motivated him to undertake years of grueling study and training? What sustains him? How does he manage it all?

This precedent distances us from our patients at times in their lives when what they may need from us more than anything else—more than another prescription or another test or another procedure—is our presence with them, our strength, compassion and support especially at times of serious illness and suffering. At times when fear and grief cut deep. At times when they may need to understand that nothing more can be done for them…or for someone they love—a friend, a spouse, or a child. When our patients need us the most—that is, when there is no hope for them—we are trained to turn their care over to the nurses, or the family, or their pastor.

We leave the bedside the way we approached it—as strangers, not storytellers.

 

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“Some patients, though conscious that their condition is perilous,

recover their health simply through their contentment

with the goodness of the physician.”

www.thewellnessseeker.com

~Hippocrates (460-400 BC)~

jan

when to think outside the box

Last week I talked about the history of the present illness, or more appropriately, the story of the present illness. This cannot be adequately recorded using a bulleted list of oversimplified prompts (What are your symptoms? When did they start? How often do they occur? How long do they last? What kind of treatment have you tried?). The story also needs to take into consideration the patient’s expectations for recovery, his fears, the misconceptions he may have about his illness, and the effect it may have on his family and friends, his ability to work and his willingness or reluctance to engage in treatment.

As if that weren’t hard enough, the standard medical record goes on to explore three other histories that influence the patient’s illness:

1. THE PAST MEDICAL HISTORY (PMH):

Here the provider is looking for a history of previous illnesses, surgery or injuries that might have led to the patient’s present illness or have predisposed him to problems later on. Perhaps he was treated for a childhood cancer that increased his risk for a second malignancy later in life. Maybe it was an accident that required surgery for abdominal trauma that predisposed him to the occurrence of a bowel obstruction later on. Maybe a case of rheumatic fever as a child damaged a valve in his heart leading to heart failure years later. The possibilities are endless.

The past medical story may sound a little different, though. In my brother’s case (see my previous posts), he suffered bouts of anxiety and depression all his life but no one understood why. He was ashamed to tell his story so no one could help him. It didn’t seem possible that his anxiety and depression had anything to do with the episode of rheumatic fever he experienced when he was five years-old. Not until he told me about the fear, dread, and hopelessness he suffered way back then did we uncover the truth together…that, as a child, he misunderstood what was happening. He was sure he was going to die, and the fear of death had stalked him all his life. Once he understood the disease and how it was treated back then, once he accepted the fact that his heart was healthy, recovery from the emotional and psychological aftermath of the illness was possible.

2. THE FAMILY HISTORY (FH):

This is important for the provider to explore because some conditions tend to run in families. Some problems are passed on from generation to generation. Genetic disorders come to mind, but so should alcoholism, certain cancers, and some mental health problems. Their occurrence in a relative may raise the risk for other members of the family.

The family story, though, may be more complicated. In her landmark book “Narrative Medicine—Honoring the Stories of Illness,”

...Rita Charon sites a patient who presented with abdominal pain, weight loss and diarrhea. Because his uncle had died of pancreatic cancer he assumed he had the same thing and he believed that death was imminent. Having watched his uncle suffer through the terminal stages of the disease, the patient chose to die of it as quickly as possible. What surprised him was the ease with which he made this decision and how complacent he was about the end of his life. When testing revealed a benign and easily treatable condition, he was forced to confront his masked depression and passive suicidality.

3. THE SOCIAL HISTORY (SH):  

Here the provider is looking for a history of smoking, drug and alcohol abuse, dietary habits, exercise, domestic violence, sexual preferences and habits, and occupation, all of which can adversely affect the patient’s health.

This is where the patient’s story gets complicated. He may be ashamed to admit to unhealthy habits and practices. He may feel guilty if his health has suffered because of them. He may lie about it. For these reasons, it may be harder to pull this part of the history out of the patient, and even harder to motivate him to change.

I had been seeing a patient for years, trying unsuccessfully to lower her triglyceride levels. We discussed her diet and exercise routine in detail at every office visit. Even medication didn't help. It was a mystery until she admitted to consuming a bag of chocolate chips every day.

Every. Day.

I was flabbergasted. Had she failed to make the connection? Was she in denial? The truth can sometimes be hard to come by.

It’s a monumental task just to take a good medical history. Then you still have to conduct the physical examination, order tests and create a treatment plan. And that takes time.

Nowadays, for speed and convenience, the medical record allows the provider to simply click on a little box next to the problem:

                                                          tobacco use

       alcohol use

       illicit drug use

       caffeine intake

But this doesn’t give you the real picture. Sometimes you have to think outside those little boxes and color outside the familiar lines to get the patient's whole story.

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“It is more important to know what patient has the disease

than to know what disease the patient has.”

~William Osler~

 jan

storytelling~the healing path

This is a true story:

I don’t remember getting sick. I don’t recall complaining about a sore throat or swollen glands, but I do remember the day my mother called the doctor. She told him I’d kept her up all night long. She couldn’t get me to eat or drink—not popsicles, not homemade chicken noodle soup, not the honey and lemon concoction she believed could cure anything, even after she spiked it with a good stiff shot of whiskey.

Still, she didn’t start to worry until the fever set in. Even then, she waited to call him until the rash appeared and the sore throat I no longer remember morphed into a case of rheumatic fever.

“Take her to the emergency room,” the doctor said. “I’ll meet you there.”

With that, my parents bundled me off to the hospital on a cold, blustery day in March. My father's attention was riveted to the road while my mother gazed out the window as if wondering what else could go wrong.

She soon found out. A few days later I learned that my brother, Peter, had also taken ill and that he was somewhere in the same hospital with the same symptoms at the same time, down the hall or around the corner, perhaps. I never saw him there, so I assumed everything was the same for him, that he was bedridden in a barren ward just like mine with walls the color of ash, the only adornment a lone crucifix above the door.

Because I had no reason to believe otherwise, I expected to share the back seat of the car with him on the way home when the ordeal ended for me. But the seat next to me was empty when we pulled away from the hospital. I didn’t understand why we left him behind that day. No one explained it to me, and I was too young to ask. (To be continued…)

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So begins a narrative that has played out in my family for over sixty years. It's the story of a shared childhood illness that eventually propelled one of us into the lifelong study of medicine and the other into a lifelong quest for healing.

Unless you know the whole story you won't understand why it took fifty years for Peter to heal. Why he was in and out of therapy, on and off medication, and in and out of recovery his entire life because of what happened to him in the hospital when he was just five years old, and I was only three.

His own doctors didn't know about it. The therapists who treated his depression, anxiety, and addiction over the years didn't ask. And because none of them knew the whole story, nothing they tried helped. He didn't begin to heal until he shared his story in a safe, supportive community where he was able to re-imagine the first chapter of his childhood and how it had hard-wired him for life. Finally, he understood the origins of the confusion, fear and despair that had followed him into adulthood like a gaggle of ugly ducklings. He finally found his wings. 

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Welcome to "storytelling~the healing path", an exploration of the importance of storytelling in the practice of medicine, a field referred to as "narrative medicine."

Storytelling is an important skill for both healthcare providers and patients alike. Why? Because patient outcomes are improved when the provider understands the patient's illness in the context of his or her experience, culture, and expectations.

Satisfaction improves when the patient feels he has been heard. And, listen up all you health system CEOs and CFOs: in the long run, it saves time and money. More about that later…

Narrative medicine embraces several writing practices.

One encourages health care providers--doctors and nurses, therapists and aides--to tell their own stories, to explore their personal journeys—the motivation and inspiration, the obstacles and misgivings, the victories and defeats—that inspired them to enter a profession that can be both challenging and rewarding, discouraging and inspiring, exhausting and energizing, depending on the day of the week. Perhaps his father and grandfather before him were physicians and to aspire to anything less would have meant outright rejection by his family. Perhaps she navigated a life-threatening childhood illness, herself, so she knows what it’s like.

Another practice enables providers to share the stories that unfold for them among the patients they care for. Which patients touched them most deeply, and why? What scares them the most? Where do they find the courage, dedication and solace that make it possible to go on day after day, year after year?

Another perspective involves the most basic skill in medical care—obtaining a thorough history of the patient’s illness. Not just the facts (What are your symptoms? When did they start? What have you taken for them?), but the patient’s feelings and thoughts about what it means to be sick. How it affects the people around them, and how they feel about that.

The final path is therapeutic. It requires the caretaker to become a storyteller, to re-imagine the patient’s recovery in metaphorical terms, to tell the patient a story that suggests healing is possible because someone else has already experienced it.

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If you are a health care provider, a patient or simply an interested reader thank you for following me here. If you have a story to tell…and we all do…I would love to hear it.

“The degree to which you can tell your story

is the degree to which you can heal.”

~Stasi Eldredge~ 

jan

Here are links to my literary blog, "begin...begin again":

 www.abeginneragain.blogspot.com 

and to my travel blog, "cherished illusions":

www.illusionsaway.blogspot.com