Sunday, February 26, 2023

make me care


The art of storytelling is as old as the spoken word, and it's just as powerful. It entertains, informs, and connects mankind across culture, race, and creed. It has the power to heal, and in medicine, it can be a life-saving skill.

Most people enjoy reading or listening to stories at their leisure. The health care provider, on the other hand, listens to stories all day long because it's part of his job. This is how he obtains the "history of the present illness," perhaps better described as the "story of the present illness." It forms the basis of all that follows: performing the physical examination, tracking down the diagnosis, and formulating a treatment plan.

The clinical encounter begins when the health care provider takes the patient's history. He listens for specific details that lead him to the diagnosis. If the problem is pain, the provider wants to know where it's located, and whether it's sharp or dull, steady or throbbing, constant or intermittent. He wants to know how long the patient has had the pain--for a day? For a month? For years? What makes it better? What makes it worse? These details guide him through a maze of possibilities.

"The shortest distance
between a human being and the truth
is a story."
~Anthony de Mello~

The problem is that patients don't know what the provider needs to hear. They don't arrive at the office prepared to rattle off a list of relevant signs and symptoms. It's the provider's job to ask about them, but he only has so much time to get to the bottom of the patient's problem. Nowadays, the written or dictated clinical note has been largely replaced by the electronic medical record (EMR), so rather than listen to the patient's history, the provider navigates his medical record with a series of clicks that pull up an array of bulleted lists, complicated charts, and sketchy details. This is intended to expedite what has been ruthlessly abridged to a ten-minute office visit.

Because time is limited, doctors often redirect the patient who appears to be getting off track or is slow coming up with answers. In fact, one frequently quoted study found that physicians interrupt and redirect the patient when they are as few as 18 seconds into the interview. Frequent redirection leads the patient to believe that what he wants to say isn't important or relevant, so details go missing.

This is a problem. Healing, or failing to heal, occurs in the context of a person's relationships with his family and friends, his surroundings, expectations, and perceptions, as well as his emotional, psychological, and spiritual life. If the patient is denied the opportunity to tell his whole story, part of him may never heal.

"Healing yourself is connected to
healing others."
~Yoko Ono~

Let's say, for example, that the patient presents with abdominal pain. He answers all of his doctor's questions. The pain has been present for four days. He describes it as constant. It started in his upper abdomen, but now it radiates into his back. Eating makes it worse. In fact, the patient says he hasn't been able to keep anything down for the past twenty-four hours. After a focused physical exam and a few tests, the physician correctly diagnoses the problem as acute pancreatitis. But that doesn't explain why the patient develops a headache, has trouble keeping his balance, and becomes confused the day after he is admitted to the hospital.

What the doctor doesn't know is that the patient has been drinking heavily because his wife walked out on him recently. In fact, he blacked out a couple of days ago and woke up on the floor next to his bed. He didn't mention it because he was busy answering the doctor's questions about his abdominal pain. So, the doctor missed the small subdural bleed his patient sustained in the fall until days later when he had his first seizure.

This scenario highlights an important problem. Obtaining an accurate and thorough medical history takes time. Given the imperative to see more patients faster, the provider may have little time to explore the details of the medical history with every patient. Perhaps he's running behind schedule, or an emergency interrupts him. In some cases, the patient can't bear to disclose the sorrow, or fear, or shame that underlies his symptoms, so he doesn't mention it. It takes time to invite, enable, and encourage some patients to share the story that brings them to the office in the first place.

"Storytelling is the essential human activity.
The harder the situation, 
the more essential it is."
~Tim O'Brien~

When the patient is constantly redirected in order to satisfy the provider's agenda, important parts of the story may be overlooked. This reinforces the importance of hearing the patient's full narrative. When we reach into their cholesterol laden hearts to understand why they are poisoning themselves with food, we need to know more than what they are putting into their mouths. When a patient is noncompliant, we need to consider what he is afraid of, or angry about, or grieving over. When we allow the patient to speak, we may discover that the reason for this one's fatigue, or that one's intractable headache is end-stage disappointment, or anger, or shame that has festered for years.

Only then can we help them heal.

"The greatest story commandment is:
Make me care."
~Andrew Stanton~
jan




Sunday, February 19, 2023

the trouble often starts with a small piece of fluff in your ear





In narrative medicine, the patient's story (his medical history) can be received, interpreted, and acted upon differently depending upon who is listening to it. For our purposes, this is likely to be a physician, a nurse, a nurse practitioner or physician's assistant, or a therapist in any field. For that matter, it could be the person who delivers the patient's breakfast tray, or mops the floor, or delivers flowers to the patient's bedside. Each of us brings a unique perspective to the process based on our personal experience, expertise, expectations, and even our fears.
 
"If the person you are talking to
does not appear to be listening, be patient.
It may simply be that he has a small
piece of fluff in his ear."
~AA Milne~
~Winnie-the-Pooh~
 
It's easy to see how exhaustion, tight schedules, and productivity quotients can affect a provider's response to the patient's story. He may feel rushed, impatient, frustrated, or anxious, depending upon how his day is unfolding. Not a healthy emotion among them. None of them helpful to the patient.

It's not as easy, however, to know when the patient's story itself is difficult for him to hear...or embrace...or understand.

"Most people do not listen
with the intent to understand.
Most people listen
with the intent to reply."
~Steven Covey~
 
It will be painful for the obstetrician who has suffered her own miscarriage to celebrate the birth of her patient's healthy infant...or to console the patient who loses her own unborn child.
 
If the provider lost his father to lung cancer, he may harbor frustration or anger with the patient who continues to smoke. It may unmask his grief when his patient fails to respond to treatment.
 
Let's say the physician has been training for her first marathon when one of her patients suffers a cardiac arrest during his daily run. Suddenly she feels guilty because she encouraged him to exercise regularly in the first place. She becomes fearful for her own safety and wellbeing
 
Listening to our patients' stories can be difficult depending upon our own circumstances. We are called to be attentive, empathetic, knowledgeable, and effective when we may feel anxious, or helpless, or sad.
 
The practice of narrative medicine encourages the health care provider to explore the patient's entire story, and to reflect upon his own reaction to it. This process promotes accurate diagnosis, and appropriate and effective treatment. It facilitates healing.
 
It also provides a platform for providers to explore the story of their own experience as healers, and to confront the challenges they encounter. This can include organizational and procedural obstacles, as well as emotional, physical, and psychological stressors. Telling their own stories helps wounded providers heal.
 
"The healing that can grow
out of the simple act of telling our stories
is often quite remarkable."
~Susan Wittig Albert~
jan
 












Monday, February 13, 2023

your table is ready



 

Three true stories involving three people I know: 

Two of them are battling oppositional-defiant cancers whose treatment is as demoralizing as the diagnosis itself. The other one has ALS, and well...you know what that means. One of them hasn't posted anything online about the latest experimental protocol she is enrolled in, nor has she asked for prayers which she has been doing for years now. I take this to be a bad sign since she already has widely metastatic disease. The other hasn't started treatment yet so he has no idea what he is in for. The one with ALS wants it to be over, even though the end scares him.

"Death is nature's way of saying, 
'Your table is ready.'"
~Robin Williams~

This is the hardest part of  your work if you are a healthcare provider, or a caretaker, or simply a friend who is trying to support someone who is facing the end of life. You were hoping for a cure. You tried to provide comfort and encouragement. Your sense of failure, your helplessness, your own empathetic sorrow make this job hard.

Nevertheless, this may be the most important work you do.

"If you love someone,
the greatest gift you can give them 
is your presence."
~Thich Nhat Hanh~

There is no one right way to do this. You can sit with them and simply breathe. You can revisit meaningful memories. Hold their hand. Play their favorite music. Tell them you love them. The list goes on. Thankfully help is available. There are ways you can prepare yourself, and you can help prepare the patient and his family for what lies ahead. 

You can involve your local hospice organization who are experts in providing comfort and nursing support.

Check out "Five Wishes", a living will that documents the personal, emotional, and spiritual preferences of the patient and ensures his wishes are understood and embraced by his providers and caretakers:

Engage a certified "Death Doula" to accompany the patient and his family on their journey, not with nursing care but by their supportive and knowledgeable presence, especially when the family is having difficulty understanding what to expect and how to navigate it.

End of life care is something we should orchestrate to the best of our abilities. We should never surrender it to the patient's family and friends. To social services. To pastors and priests. It should be extended with the same expertise and attention we accord medical and/or surgical treatment. It is our sacred duty to the patient.

"Seeing death as the end of life
is like seeing the horizon as
the end of the ocean."
~Daniel Searls~
jan





Monday, February 6, 2023

faith in humanity


 

Every so often we cross paths with someone who restores our faith in humanity. Someone who offers a helping hand, a kind word, or generous support. It is especially meaningful when it is unexpected, unearned, or undeserved. If you are feeling a little cynical about the way life is unfolding around you, it can come as a welcome relief, like the reuniting with an old friend. A reminder that there is goodness in the world, after all. If it happens in the health care setting, it is especially noteworthy. It can be a be a reason for hope. A source of healing. A soft place to land for a while when the news is bad.

I witnessed it twice this past week.

In the first instance, I accompanied a friend and her husband (who was recently diagnosed with one of those oppositional-defiant cancers that requires super-specialized treatment) to their first appointment with a surgical oncologist at Johns Hopkins. She will be leading a whole team of experts in the complicated and treacherous 8-10 hour procedure he will undergo...provided the pre-operative chemotherapy and radiation prove effective in mitigating the progression of his cancer.

She outlined the treatment plan in general, its risks, and the prognosis from a surgical standpoint. When she was finished, she offered to track down the radiation oncologist and the medical oncologist to see if their schedules would allow them to stop by and introduce themselves. Now, mind you, this is Hopkins. It's a very busy place. And we didn't have an appointment with either of them. Nevertheless, they both carved out time from their hectic schedules, and they both came by. Not just to say hello. Both of them took time to explain exactly when, where, and how they would be involved in the process. They did it without a hint of impatience, annoyance, or resentment, even though they probably missed lunch, and ended up way behind schedule that day because of us. Each of them took their time, answered our questions, and extended encouragement and reassurance. They were attentive, caring, and knowledgeable. We left feeling as though we were armed and ready to take on this formidable enemy.

"Nobody cares how much you know
until they know how much you care."
~Theodore Roosevelt~

Later in the week, at 4:00 PM on Friday afternoon to be precise, I was meeting with my oral surgeon and dentist who had called earlier in the week to cancel a major procedure that was scheduled for next week. I had no idea why, and frankly, it made me a little anxious. I figured something was wrong. Understand that this was an after-hours consultation on a Friday, and my dentist had to navigate rush hour traffic to meet me at the surgeon's office. 

"Self-sacrifice is the
noblest benevolence."
~Imam Ali~

But this is the thing. They called me in to discuss a possible misunderstanding. Perhaps a miscommunication. They wanted to be certain I knew what I had signed up for because they had discussed slightly different approaches to the problem, and were anticipating performing slightly different procedures. It's no wonder I was a little confused when I signed on. So were they. That said, we clarified all the details, and once we were all on the same page, we agreed to reschedule.

Intuiting that there might be a problem, they went out of their way for me. They made time for me. They didn't hand it off to the dental assistant or receptionist. They didn't decide for me; they included me in the discussion. Like the team at Hopkins, they were patient, thorough, and knowledgeable. Kind. Helpful. Present.

These two encounters reminded me that, even though many of us believe our healthcare system is broken, compassion, kindness, and the ethics of excellent care reside with the provider...not with our corporate taskmasters, insurers, or pharmaceutical marketeers. Not with any CEO, CFO, or COO. Not with litigators. With us.

We have a duty as healthcare providers, and we take an oath that attests to it. 

The Hippocratic Oath

 We pledge:

"I will comport myself and use my knowledge in a godly manner."
 
"I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug."

The ethical, moral, and humane practice of medicine is our sacred duty, or it should be. It is a gift we give...and sometimes, one we receive. I was lucky enough to witness this unfolding with my friends at Johns Hopkins this past week, and I was grateful to experience it, myself.

Never underestimate the healing power of kindness, compassion, and trust.

"The work of your heart,
the work of taking time to listen, to help,
is also your gift to the whole of the world."
~Jack Kornfield~


jan