Tag: doctors

The Need for Mindful Listening by Doctors

After completing my last blog post about Dr. Rafael Campo’s view that poetry expresses the rhythm of the body, I began to reflect further on my recent medical experience.  Rafael contends that doctors can access the “interior story” of a patient by listening to the poetry of the patient.  The patient’s medical story encapsulated in their poem provides the “context” for the evolution of the patient’s illness.

Uncovering strong emotions

On writing about Rafael’s perspective on what makes a “good doctor”, I began to realise that my “interior story” was really one of resentment and frustration with my recent treatment by doctors and specialist consultants.  It has been difficult for me to own this part of my medical story because of my inherent respect for doctors and their calling to help people in need of medical assistance.

In the past, I had focused on the “data” about my medical story .  For example, when I wrote the poem The Sounds of My Medical Story, I was very focused on eliciting the sounds and not on exploring the meaning and feelings behind them. Through a process reflection, I became more aware of the disruptive nature of my chronic illnesses and my frustration about the lack of support from the medical profession.

It was left to me to find a way to tone down the sounds/noise of my body by exploring “periods of silence and solitude” so that my body could emit a “soft pattern of soothing sounds”.  I have found these soothing sounds disturbed on a number of occasions recently when my body reacted to specific foods and elevated my heart rate to twice its normal level (from 50 beats per minute to 110 beats per minute) for a period of hours.

Lack of knowledge and understanding of many doctors

Part of the problem is that there is a lack of knowledge and understanding amongst doctors and specialist consultants in relation to my core dermatitis and digestive illness, Mast Cell Activation Syndrome (MCAS).  In consequence, there is a tendency to deny its existence or to ignore it as a part of my medical story. 

It is interesting that one of the new questions added to the survey for the joint Influenza/COVID vaccination asks, “Do you have MCAS and do you suffer anaphylaxis from it?’.  This new question for the Federally-funded, free vaccinations gives an indication that the existence of MCAS and its potentially serious impacts are recognised by some medical professionals in positions of authority.

In contrast, last year I had asked my gastroenterologist to undertake a biopsy during my routine colonoscopy to diagnose officially whether or not I had MCAS (apparently, a biopsy is the only reliable way to test the presence of MCAS as a blood test alone does not provide the necessary information).  My gastroenterologist refused on the grounds that “MCAS is a controversial area” and not accepted by all medical professionals.  At the same time, he gave me the name of a specialist consultant in another area who recognises MCAS and works with patients on this illness. 

Disinterest and disdain of some doctors

I subsequently obtained a referral to a specialist allergist who refused to read my medical history (that I spent hours preparing) but undertook a number of skin prick tests that showed that I was allergic to soy, wheat and dairy products among other things.  He lost interest in my case when he established that I do not suffer from anaphylaxis.  It was left to me to ascertain what foods, in what quantities, are harmful to my body and mind.

I then turned to my General Practitioner (GP) who has a Doctorate in Immunology and again I received no insight into MCAS and how to manage it. However, my GP referred me to a specialist dermatology clinic at a hospital because they were of the view that I would be “a good candidate for biologic treatment” as my MCAS was not under control and I was restricted to 10 foods (that were not harmful to me).  No explanation of biologics or its potentially harmful effects were given to me (I had to research this treatment myself).   From my own research, I have established that biologics are complex and expensive, can cause an allergic reaction and expose the body to more serious infection.  They are often given by injection and can require regular visits to a hospital (e.g. fortnightly).  

During my initial visit and a follow-up to the dermatology clinic, I saw two different registrars.  The first took my medical history record “for the file” but did not discuss my MCAS or subsequent events such as a tick bite, Mammalian Meat Allergy or Ciguatera fish poisoning.  The registrar was totally data-focused on assessing my suitability for biologics.  I was given a request form for a battery of blood tests (20+) to check whether I had one of the conditions that would eliminate me from further consideration for biologics.

Apparently my blood tests results were “good” which I ascertained to mean that they did not invalidate me as a biologic candidate.  On the follow-up visit to another registrar, I was not given the test results but told, after a physical examination, that I did not qualify for biologic treatment as my dermatitis “did not cover my whole body”.  From the outset, I had explained that I was not interested in biologics but this was ignored. 

Since my visits to the hospital dermatology clinic involved more than three hours (including travel time), I cancelled a further follow-up meeting.  I received no useful help with my dermatitis (no one was interested in my symptoms or triggers) – the registrars were only interested in pursuing their biological model which, in this case, entailed biologics. 

In a recent Q & A session with MCAS 360 practitioners I asked whether they supported using biologics for MCAS, the response was that they did not support this approach because it was very much trial and error as it was very difficult to determine the appropriate level of intervention and because it had potentially damaging side effects.

Reflection

Interestingly, during a live presentation by Dr. Neil Nathan, author of The Sensitive Patient’s Healing Guide, a participant from Chicago described her experience with the medical profession when she attempted to discuss her MCAS triggers and symptoms.  She visited an allergist (who claimed expertise in MCAS) and “ was belittled” and told to go to a dermatologist.  However, the allergist ordered a serious of tests despite saying it “was a waste of time”.  The participant then visited a dermatologist who “put his hand up” and told her “to shut up”.  He prescribed steroids which proved to be “useless”.  The original allergist’s office rang the participant back after the test results and told her she had MCAS and needed to return.  The participant chose not to return and over time progressively researched her own condition and improved her health by herself.  Dr. Nathan himself, during his presentation, commented that “if you can find someone who will listen to what you are saying about how sensitive you are, that’s a godsend”.

Rafael highlights the fact that doctors are taught “detached concern and distancing”.  They are “immersed in the biological model” and think only in terms of diagnosis and the “treatment algorithm”.   Poetry, in contrast, expresses emotion fully and thus “abets empathy”.   The cadence of poetry demands mindful listening, attention and attunement to emotive expression and the human sounds within.  It challenges doctors who are caught up in endless checklists, “overwhelmed with diagnosis codes” and disabled by “distancing”.

The Health Story Collaborative is designed to close the listening and empathy gap.  It creates multiple platforms for health storytelling  and provides an empathetic audience of people-with-chronic-illness, as well as doctors.  A supportive community is a key element in the healing journey of people with chronic illness.  I have participated in HSC’s Creative Meetups for the past two years.  This group of writers-with-chronic-illness meets online once a month and provides an opportunity to write about our “interior story” and to share the outcomes in this supportive community.

I have written a poem to reflect my experience with medical professionals and my feelings about their lack of listening and empathy:

The Inner Story Laid Bare

Frustration and resentment abound,
each professional with deaf ears,
not listening to my subjective medical story,
intent on objective data exploration,
missing the “interior story”.

Failing to understand the context of my chronic illness,
blind to its origins, effects and impact on quality of life,
always grasping for what is scientifically known,
shared patient experience ignored,
in the interests of a deemed correct diagnosis and treatment.

Lack of knowledge and understanding,
desensitized by a biological model,
closed to our “interior story”,
unable to listen mindfully,
unwilling to summon empathy.

A peer support community,
ready to share their health story,
prompts for prose and poetry,
collaborating to close the empathy gap,
willing to be vulnerable for each other.

If medical professionals practised some form of mindfulness they can develop the art of mindful listening to patients.  Rafael Campo has used poetry as his way into mindfulness.  Research demonstrates that mindfulness practices are highly effective for the medical professionals. 

As they grow in mindfulness, medical professionals can enhance their physical wellbeing, reduce the risk of burnout, improve their care of patients and develop emotional regulation.  Training in mindfulness, undertaken by hospitals and medical institutions, is designed “to train doctors to actively listen and engage with patients mindfully” thus increasing empathy amongst doctors and improving the accuracy of diagnosis.

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Image by Alexa from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.

Listening to Our Interior Story

Dr. Rafael Campo, in an interview for the Boston Globe, spoke of the ability of poetry to reveal the “interior story” of the creator.  He highlighted the rhythm of poetry and how it mirrored the rhythm of the body.

Dr. Rafael Campo, a Harvard trained doctor, is a highly acclaimed poet, essayist and medical specialist at Harvard Medical School.  He is an untiring advocate and health professional for HIV infected patients.  Rafael is the author of nine books of poetry and other publications.  He is also the poetry editor for the Journal of American Medical Association (JAMA).  He teaches primary health care at several medical institutions, including Harvard Medical School. 

Rafael has received many awards and honours for his poetry and prides himself in using a “palette of poetry” by adopting a diversity of poetic forms, thus reflecting his “hybrid” experience.  Rafael uses his poetry to express his feelings for his cancer and AIDS patients as well as emergency room patients who have encountered the brutality of racism and homophobia in America.  He also teaches poetry to patients and medical professionals alike.

Listening to the rhythm of poetry

Rafael considers poetry to be “the opposite of silence” because it expresses the stories of patients and medical professionals.  He maintains that patients are often silenced by the biomedical focus of doctors who are trained to be “relentless in the pursuit of facts”.  He argues that doctors are taught to suppress their own feelings and adopt a “detached” stance.  In the process, doctors don’t listen to the life stories of patients and lose valuable insight into the “context” of the patient’s illness.

Rafael contends that just like listening to a heartbeat with a stethoscope, doctors can listen to “the physical rhythms of the body” expressed through the language of poetry.  In his own words, “poetry is full of the music of the body”.  He highlights the corporeal nature of poetry because, in his view, it fundamentally expresses “in a visceral way what it is to be human”. 

Rafael argues that listening to patients’ poems and writing poetry makes him a better doctor because he is more attuned to the “context” of an individual’s illness and their “interior story”.

Writing prompts for our Creative Meetup Group inspired by Rafael Campo

I participated in the June, online Creative Meetup sponsored by the Health Story Collaborative for writers-with-chronic-illness.  Our facilitator, Jennifer Crystal, read an extract from Boston Globe’s interview with Rafael.  When Jennifer introduced Rafael’s perspective on the human rhythm of poetry, it immediately struck a chord with me.

The interview extract served as the stimulus for our writing during the Meetup.  We were invited to write poetry or prose around the theme of the stimulus piece and the related writing prompts offered by Jennifer.  I chose to write a free-form poem about my experience of chronic illness while addressing both the writing prompts.

Writing prompts:

  1. What are the sounds and/or rhythms of your medical story?
  2. If you could hold a stethoscope up to your interior story, what would you want us to hear?

After we had completed 20 minutes of writing, Meetup participants shared their writing which was rich with metaphors to describe the sounds of their medical story and the nature of their “interior story”.   The metaphors employed by the participants focused on both disruptive/disturbing sounds and soothing sounds:

Metaphors of disruptive/disturbing sounds:

  • like war sounds
  • the storm that couldn’t kill
  • church bells ringing
  • loud chaotic concert
  • waves crashing
  • noisy, electronic hospital environment
  • like trumpet blasts.

Metaphors of soothing sounds:

  • sweet melody of harp
  • whispers of nature and beauty
  • soft pattern of soothing sounds
  • silence and solitude.

Poetry affords the opportunity to blend opposites (e.g. noise and silence) and change metaphors to break frames and create a new mindset.  Poetry has the power to transform our perspective.

My response to the writing prompts is reflected in the following poem:

The Sounds of My Medical Story

A story that lacks rhythm,
a staccato effect.
Flare-ups like trumpet blasts,
Disrupting and interrupting.
Periods of silence and solitude,
A soft pattern of soothing sounds.
Poetry as alchemy.

Reflection

I have been inspired by The Book of Alchemy authored by Suleika Jaouad in which she explores the art of journalling with 100 very accomplished contributors.  As Suleika was writing the final chapter of her book she received word that her aggressive leukemia had returned.  While preparing herself and her house for another extended hospital stay (for chemo and a third bone marrow transplant), she recalled the alchemy of writing a journal.  This led her to write a poem about how journalling alchemizes isolation and suffering and leads to new insights and a newly envisioned future.

In her poem, Suleika draws on multiple analogies to express how she has experienced the alchemy of journalling:

  • a companion to untangle the knots in her life
  • a source of memory and reverie
  • a teacher of mindfulness (through paying attention to the simple things in life)
  • a mirror for her past, present and future self
  • a refuge and hiding place and “finding place”
  • a means “to write her way through”
  • a co-creator of a future self.

On reading her poem about the alchemy of writing and journalling, I was inspired to produce an “erased poem”(in Haiku format) from her words:

An Ode to Poetry

Friend for company,
finding place for future self.
Create my way through.

As we grow in mindfulness through writing poetry, blogging or journalling, we can access our “interior story”, develop creative approaches to challenging situations (such as illness) and build a new level of acceptance of “what is”.  We can also draw inspiration from others by writing in community – accessing the power of storytelling and sharing.

Rafael reminds us that a poem is “crafted” around a theme and structural elements such as rhyme. rhythm, alliteration, metaphor, length, format, and language.  I found that I had to craft this blog post when I became overwhelmed by the volume of information about Rafael and his poetry.  In crafting the post, I needed to reduce the focus to one key area, find ways to integrate disparate sources and explore avenues for integrating the material.  The content and structure evolved through multiple edits and rewrites.

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Image by Olle August from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.