A Medical Humanist's Note

…Stories as a Reminder of Love

 

“Learn the art of fragmented, irrational conversations and follow the patient’s lead instead of trying to control the dialogue.”

– Zen and the Art of Coping With Alzheimer’s
Denise Grady, New York Times (August 14, 2007)

Recently a colleague e-mailed me the link to Jane Brody’s New York Time’s article Alzheimer’s Patients Keep The Spark Alive by Sharing Stories. 

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I’d been thinking about the topic of my next blog when I found myself catapulted back in time to 2008 and an article written by Dr. John Launer in the Postgraduate Medical Journal, which referenced my work as a medical humanist. It was titled, Learning Humanity. A decade has since passed. I re-read the article and decided to write Dr. Launer to ask his permission to share it on my blog.  As I pressed send, I heard my sister Tamara’s words echo in my mind’s ear: “Try not to expect anything—for in that way you are open to everything.” I awoke in the morning to Dr. Launer’s e-mail: “It’s lovely to hear from you. I have been following and admiring your work over the years, including your blogs, and I wondered if our paths would cross. Of course you can use my blog.  It is also good to be reminded of my piece on learning humanity and it was moving to discover how it affected you. It would be lovely if opportunities arose for meeting either in New England or Old England. Until then, John" I replied: “Dear John, Ah...I just got on to my computer today to find I have permission to share your blog, Learning Humanity. I must confess, I wondered over the years if our paths should ever cross or would you remember me. Your response gave me that and so much more! With gratitude, Celia” Here’s the link to the article. I look forward to hearing what readers think about Dr. Launer’s perspective.  
Recently I was asked if I had read “The Well-Tempered Sentence: A Punctuation Handbook for the Innocent, the Eager and Doomed” by Karen Elizabeth Gordon. I confessed that I often ignore the rules of punctuation. My penchant is for the ellipsis, which has been described in academic circles as “those three small dots said to be superfluous” and inserted to “save space or remove material that is less relevant.” I however, often used the ellipsis to indicate a patient’s sacred pause of reflection when they described their lived experience of illness, which I documented for the medical record. What immediately came to mind was an episode from the TV series The Big C titled “On Delivering News,” The scene opens with a patient in the exam room awaiting results of her most recent scans. She has been participating in a clinical trial. Her body language suggests she’s preparing herself for bad news. The door opens and she is quick to read her doctor’s facial expression, “You are smiling—you never smile,” she announces. “You,” he said, “are among the small percentage of patients whose cancer has responded to the drugs—your tumors are beginning to shrink—some of them have disappeared.” “WOW,” She exclaims. “I said Holy,” the doctor admits. “So I have more time?” she asks him. “This is uncharted territory—these are new drugs—but we have every reason to be optimistic. There is not a period at the end of your sentence anymore.” “Is it a question mark?” she asks. “More like an ellipsis. That which we do not know is far greater than which we do,” he says. I say, what is unknown need not separate doctor and patient.
Who said, “Poetry is language writing itself out of a difficult situation?” I’m not sure. What does come to mind is the poem “Late Fragment” by Raymond Carver, who was a patient at the time.  “And did you get what You wanted from this life, even so? I did. And what did you want? To call myself beloved, To feel myself beloved on earth.”  During my tenure as a medical humanist at Southwestern Vermont Regional Cancer Center, I turned to my skill set as a writer to create and facilitate a program titled Writing is Good Medicine™ which helped patients put words to their experience. I provided a prompt and asked them to write whatever came to mind. On one occasion I handed out a copy of “Late Fragment.” I was awe struck by what Maureen Kearns wrote, which I’ll share with you. “When I read the Late Fragment poem I puzzled over the words ‘Even so…’ ” I wondered what that meant within the context of the words given. I puzzled even more about the question… Did I get what I wanted from this life? “even so “ was the easier of the two questions… “To call myself beloved…to feel myself beloved on this earth… Both questions answered. The “even so “ phrase makes terrific sense to the indescribable joy one finds in the ordinary of life… To call myself beloved…to feel beloved on this earth… I would not have known these words to say… and yet they have crept into my heart. When I thought about getting what I wanted from this life… I’ve not thought of it that way…I didn’t make a list and go after things. I lacked the wisdom to identify in large ways what my heart yearned for. Only lately have I begun to know in a clearer way what I have been looking for all of my life… To call myself beloved…to find at last a true love for myself… to love all of myself and treat myself gently amid success and failure. to feel myself beloved on this earth…Who would not find pure joy in this…are not all other joys made small by comparison and other substitutes unmasked as counterfeit. I am glad this poem was given to me…I’m glad it began to live and breathe for me. A bit of sadness touches the corner of my eyes… I want more time for living even as poorly as I do sometimes. I want more time for doing it. I have felt beloved on this earth… so sweet the sound and feel… moments one would wish would last and last…but I have known its touch.” Perhaps, we should all take a moment to write about what Carver’s words bring to mind. You never know what will be revealed.  
 

“Learn the art of fragmented, irrational conversations and follow the patient’s lead instead of trying to control the dialogue.”

- Zen and the Art of Coping With Alzheimer’s Denise Grady, New York Times (August 14, 2007)

Recently a colleague e-mailed me the link to Jane Brody’s New York Time’s article Alzheimer’s Patients Keep The Spark Alive by Sharing Stories.  I went to “Save As” and printed off a copy to find the pages were in reversed order. The last page being the first noted: “Correction: A version of this article appeared in print on 08/09/2016 on page 5D of the New York Times edition. The headline now reads: “With Dementia, Stories as a Reminder of Love.”  The revised headline catapulted me back in time to when the Director of the Dementia Program at the Vermont Veterans Home invited us—the Center for Communication in Medicine-- to present an educational program for those facing the challenges of caring for loved ones diagnosed with Alzheimer’s disease. There were many times when I walked past the DVD of “Iris” in the video store. But this time, thinking about content for a caregiver program, I stopped and read the short description on the back cover: “Iris celebrates her life, while Alzheimer’s robbed her of it’s meaning.” I was also interested in viewing the film from a personal perspective, as a daughter whose father was diagnosed with late onset Alzheimer’s disease at 87 years of age. My father was a man in search of meaning who turned to philosophers, poets and his bible “The Prophet” by Kahil Gibran. And, when he could no longer comprehend words on the page, I’d read this passage to him over and over again. "And there are those who talk, and without knowledge or forethought reveal a truth which they themselves don’t understand. And there are those who have the truth within them, but they tell it not with words.” Often, after a reading to him my father would take my hand, look me in the eye and would speak without words. Thinking about how those living with Alzheimer’s struggle with words, I chose a clip from the film to open the presentation at the Vermont Veterans Home. The scene depicted an exchange between Iris’s husband and her doctor. As the doctor pointed to the image of Iris’s brain her husband John cried out: “You have shown me a map of Iris’ brain world. You say it is empty, that all the unknown mysteries of life are gone now...but how can she say things with such lucidity...where in the empty jungle does that come from?” “We don’t know,” the doctor admits. “Not we—you don’t know. Is it not remotely possible that what Iris has to say is of some consequence?" Hesitantly the doctor admits, “Yes perhaps...” “Perhaps,” her husband John demands, “you must learn her language.” I suspect there are more stories inside. Perhaps, if we listen closely we may glean some fragments.
  In a recent KevinMD blog the term “doctor’s emotional switch,” was used by Dr. Mark Abrams to describe the protective coping mechanism ingrained in medical training to objectify their patients and thereby maintain emotional distance. He notes that this approach can have both positive and negative effects.  No doubt that we’d like our doctors to be current on the science of medicine, make the correct diagnosis and offer an effective treatment. Yet, I imagine we’d also like to be seen and cared for as a person facing a serious illness, which can be life altering. Dr. Abrams recognizes the dilemma that doctors’ face with less time for office visits and increased documentation, which can translate into restrictive conditions for conversations. Now, we find doctors typing into an electronic medical record. The nature of visits these days can leave us little opportunity for the “doctor’s emotional switch” to be turned off. Oftentimes, patients have said, “My doctor’s visit was so impersonal!" Frankly, it’s not a matter at pointing fingers at doctors. Patients also share a responsibility to ask questions and express concerns beyond just responding to a checklist. A recent conversation with a primary care doctor offered a good example of how to help humanize the doctor-patient interaction. The doctor told me, “I’ve found inviting patients to sit beside me at my computer to be less threatening. Invariably, I’d warn them my computer skills were less than perfect, which never failed to elicit a smile. The invitation to see what I’m doing helps to get us on the same page in working on a care plan.” This doctor demonstrated there can be creative ways to place the “doctor’s emotional switch” on hold. The first step is for both doctors and patients to talk about what may be barriers to open and honest communication. And, taking time to recognize the importance of the human connection can help build a healthcare partnership and will likely have a healing effect on both doctors and patients even with a computer in the room.
THE SCENT OF WORDS “In illness words give out their scent… if at last we grasp the meaning, it is all richer for having come to us...” Virginia Woolf On Being Ill (1930) “She knows,” her husband cries out as he looks toward me, “only she knows!” His wife interrupts and tells me what she knows. “He has tumors on his brain and it’s causing him to have fits. He just ain’t thinking straight but he keeps asking for you, sayin,’ “you know-only you know!” What do you know,” she asks, “that the doctors aren’t telling us?” “I don’t know what the doctors aren’t telling you or your husband,” I say. “What I do know in my role as medical humanist I’ve learned from patients by documenting what they understand and feel about their illness—in their own words—for the doctor to review.” I tell her, “One patient immediately comes to mind. When I asked him what he understood about his illness he was he quick to respond: “’Bad news is not heard in complete sentences.’” “Ain’t that the truth!” she exclaims. I ask myself, what is the truth? There’s the doctors’ truth and what patients and families understand to be the truth. There is no one truth. Her husband turns to me and calls out for the second time, “You know, only you know.” This time he closes and opens his right eye punctuating his words with a wink.  I don’t know who it was that said, “One eye sees, the other feels.” I do know a wink to be suggestive. It suggests it’s just between you and me. I move from the foot of his hospital bed to his bedside. The guardrails, which protect him from falling, don’t prevent me from putting my ear close to his lips to keep it just between him and me. “What do I know?” I ask. I hear his dry lips parting —it is the sound of human effort. I feel the warmth of his breath on my cheek. In my line of sight is an opened can of Ensure whose straw is flexed and points to me. I breathe in the scent of strawberry as he murmurs,I am here by chance, not by choice. What do I know about chance I ask myself? Chance lacks forethought. As for choice I imagine that when you learn your life is threatened you have a choice to turn toward this knowledge or away from it. I am of two minds. I imagine myself turning to and fro—from side to side. Yet, in the act of going back and forth, there is a moment when you face mortality head on. It can be a brief but profound realization. He knows what he says to me is included in my note for his doctor, which I attach with a wire clip to the front of his chart. The doctor will review my note, sign off and it will become part of his medical record. What was the doctor ’s response to my note? “He said he’s here by chance?” she cried out. In the next breath she explains the physiological facts: “He’s not fully conscious—it is a side effect of morphine.” I tell her what comes to my mind are the words of the philosopher Gaston Bachelard who said, “The subconscious is ceaselessly murmuring, and it is by listening to these murmurs that one hears the truth.” We pause and look at each other with appreciation, recognizing the intersection of medicine and the humanities.
One of the things I’ve heard many patients speak about is how their diagnosis resulted in what felt like an identity crisis—it seemed to change “who they were” nearly instantly, and in a very fundamental way. Adrienne B., a nurse who became a patient put words to her experience when she said, “Every day you wake up and your whole sense of self has changed whether you want it to or not…you have to think of yourself as different.” The Reverend Steven Spidell, a chaplain at M.D. Anderson Cancer Center (Houston, TX) and facilitator of the class “Healing Stories" notes:  In the process of becoming patients, people often lose their stories… With chaos and disruption, they begin to tell the doctor’s version of their story, the medical version, not their own. They get tunnel vision and forget who they were before. But people are fundamentally narrative based. They need to find meaning, make sense out of their disease. Rev. Spidell says people are “narrative based.” I understand that to mean we make sense of who we are by telling stories about ourselves. That is until a doctor tells us “You have cancer,” and suddenly that story seems to overshadow all the ones we had before. But I’ve learned that this new story can have positive effects, of course—Rich R, a patient in the video from the Difficult Conversations Workbook tells us, “No question you are gonna be in shock, depressed and so forth. And once the dust settles you have to say, ‘Okay now what do I want to do with the rest of my life?’ ” This is a question that can prompt us to change our priorities: to take better care of ourselves, to take a trip we’ve been putting off, to quit a job we’ve always hated… On the other hand, it can also weigh heavily on us. We spent a lifetime creating an identity, figuring out what was meaningful to us, and just like that it got traded in for “Person With Cancer…”and nobody asked our permission! Readers, I’d like to invite you to share your thoughts and experiences. Do you feel like your diagnosis replaced your old story of yourself? Or have you hung onto or adapted that story? Does your new story change the way you think of or make sense of who you are?
As the year 2017 is coming to a close and a new year is approaching I find myself thinking about what has passed and what’s to come. Today, I am catapulted back in time—to 2002 when one of the oncology nurses at Southwestern Vermont Regional Cancer Center introduced me—the medical humanist’s role—to a newly diagnosed patient. “Maybe you can answer my question?” the patient asked. “I’ll try,” I said. “I find myself wondering when I should let my family and friends know that I have been diagnosed with cancer,” she explained. “I’m not sure when treatment will begin so is it better that they know now or should I wait.” “Is avoidance an effort on my part to spare others or maybe a fear of me being unable to handle their responses?” She paused for a moment and asked, “Do you think e-mail is an acceptable form of notifying them that I have been diagnosed with cancer?” “Ah...” I hear myself say. “I think e-mail could be one of the prescribed forms. It allows you time to compose your thoughts, construct the message you want to send and to connect with your family and friends. And, for those who receive your message to have time to think about what it is you have said and how to respond.” In such instances e-mails can protect us from one’s immediate response to the word cancer, which is only one word in the sentence.  Or, as the poet Emily Dickinson discovered: A word is dead When it is said, Some say. I say it just Begins to live that Day.
  Each month I receive an online newsletter from “Cancer.Net”.  The newsletter provides approved information to help patients and families make informed healthcare decisions. A recent issue titled “What is Tumor Board?” catapulted me back in time. It was in 2002 that Dr. Letha Mills, medical director of Southwestern Vermont Regional Cancer Center, introduced me—a medical humanist—to the members of Tumor Board. I was invited to a weekly meeting of physicians who review diagnostic findings and offer suggestions for cancer treatment. Their facial expressions begged the question—what exactly is a medical humanist? Dr. Mills was quick to note that I asked patients about their understanding of diagnosis, prognosis, treatment plan and how they were coping with illness. My role was to document the patient’s perspective—in their own words—for the cancer care team, providing a tool to identify issues and concerns that may not have been discussed at the office visit. From the look on their faces the physicians still seemed a bit puzzled but it was time to review cases. I watch as the radiologist slips the image of the patient’s breast from 6 months ago into the left side of the view box. He then places her x-ray, taken yesterday, next to the first image. The patient had discovered a lump in the same breast. Using a laser pointer, he takes us through his “read” from 6 months ago, which “shows no sign of abnormality.” I imagine she breathed a sigh of relief, as did I, after my last mammogram. But her x-ray today highlights a 3 centimeter mass. “How can that be?” I asked “It’s an incidental finding,” the radiologist said. I try to understand his choice of the word “incidental,” which is defined as an unpredictable occurrence. Is he saying that all women by mere fact of gender are at risk for breast cancer? The radiologist turns to the side-by-side mammograms to reassure me, and probably him, that nothing was missed. One of the surgeons responds to my question. “Some cancers can take up to ten years to develop into a detectable mass.” Adding, “85% of women with breast cancer have no family history of the disease.” I would not find comfort in knowing that unbeknownst to me something monstrous was happening inside my body. “What do I tell her?” He asks me, noting again that 85% of women with breast cancer have no family history.” “Tell her that you don’t know. What you know is that when this happens we have to confront the limitations of science and that the result can sometimes inflict both physical and emotional suffering. It would be a mistake for me to try to explain what can’t be easily explained.” “Ah,” he says. “So you’re telling me to let the patient know that I don’t have the answer.” “Yes, I think it can help to recognize the experience through one another’s eyes. A duel perspective can humanize the doctor-patient relationship.” “Ah,” he says again. For a moment it appears that he’s lost in thought. Perhaps, he’s imagining himself having this conversation with his patient.
  A colleague recently forwarded a New York Times article, “The Appointment Ends. Now The Patient is Listening." The author Paula Span notes new efforts to help patients understand their health status by recording appointments.  I have often been asked about how to prepare for appointments with doctors. Although many of us do not know what questions to ask, it’s still important to bring a list and a recording device. My reason for suggesting patients record their appointments was not based on scientific principles but what I learned in my role of medical humanist at a cancer center in Vermont (2003-2005). I documented--in the patient’s own words--what they understood or misunderstood about their diagnosis, treatment options and how they were coping with illness. After having read and signed off on my medical humanist’s note, doctors would often say, "They never told me that." In an emotionally charged conversation much is not retained. So, using the note as a reference, doctors would then ask, "What don't you understand?" Ms. Span notes that Dr. James Ryan, a Ludington, MI physician, recognizes it’s difficult for patients not to feel overwhelmed by what they hear during the medical visit. With permission he records appointments so his patients can listen to what was discussed. “At some point,” he believes, “it will become a normal thing.” In a 2013 blog "Why Every Patient Should Be Recording Appointments" I addressed the issue of recording visits. It is now 2017. The time has come for patients to have every resource available to help with understanding what questions to ask. Whose life is it anyway?