A Narrative Approach to Healing Chronic Illness

Thomas R. Egnew

doi:10.1370/afm.2182

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Reflections on Narrative Approaches to Healing
David F. Tinsley

Published on: 09 April 2018
Reducing Physician Guilt May Promote Healing
Larry B Mauksch

Published on: 27 March 2018
Learning to Care, Learning to Heal
William R. Phillips

Published on: 27 March 2018
Beyond the individual clinical encounter: suffering and story as social and public
Peter J Whitehouse

Published on: 26 March 2018

Published on: (9 April 2018)
Page navigation anchor for Reflections on Narrative Approaches to Healing
Reflections on Narrative Approaches to Healing
David F. Tinsley, Professor Emeritus
In the introduction to their philosophical exploration of the problem of pain and suffering, Marilyn and Robert Adams set forth three experiential dimensions with which every human being is confronted: 1) the practical dimension of survival, e.g., how do I stay alive? 2) the existential dimension of "whether and how a life laced with suffering and punctuated by death can have any meaning" and 3) the theoretical dimension o...
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In the introduction to their philosophical exploration of the problem of pain and suffering, Marilyn and Robert Adams set forth three experiential dimensions with which every human being is confronted: 1) the practical dimension of survival, e.g., how do I stay alive? 2) the existential dimension of "whether and how a life laced with suffering and punctuated by death can have any meaning" and 3) the theoretical dimension of one's place in existence, without which the meaning of life cannot be determined. When a clinician focuses exclusively on what Thomas Egnew calls the biomedical aspects of diagnosis and treatment, she can actually hinder or even destroy the patient's ability to achieve some measure of healing.
The essential role that narrative plays in healing finds unforgettable expression in the late Paul Kalanithi's devastating and inspiring story, When Breath Becomes Air. The author, a neurosurgeon diagnosed with Stage-IV terminal lung cancer at age 35, narrates the end of his own life through several stages that Egnew documents in this article. Since Kalanithi is both clinician and patient, the biomedical response gets priority: he devotes every bit of his training, erudition and insight to consulting with his medical team on his own treatment. When no cure is possible, he stoically and heroically continues to practice his craft in the face of growing disability. When this proves to be impossible, he focuses on sharing what he has learned about healing and death. Ultimately, his widow Lucy writes the biological and autobiographical conclusions to his tragic narrative by giving birth to a daughter and by bringing his book to posthumous publication.
A diagnosis of chronic and/or terminal illness such as Stage-IV cancer, ALS, MS, Parkinson's, or Alzheimer's turns the existential and theoretical questions that life asks of us on their heads. The patient is forced, as Kalanithi was, not only to accept that he will die, but also to consider how he will die, what this means for his understanding of his own life, and what the consequences are for his loved ones. It is at this point, as Egnew stresses, when biomedical approaches are limited to treating symptoms and minimizing pain, the clinician's ability to listen, to enter into dialogue with the patient, and to act "as a guide to help the patient transcend suffering" becomes essential.
Unfortunately, at this point, the clinician also has the ability to do the greatest harm, which Peter Dunlap-Shohl illustrates poignantly and hilariously in his graphic Parkinson's autobiography, My Degeneration. Dunlap-Shohl caricatures no fewer than a dozen encounters with clinicians that epitomize the ham-handedness and even cruel obliviousness that he himself or members of his support group actually experienced in just the few months following their diagnoses.
Egnew's helpful suggestions to clinicians in his concluding section, "A Matter of Words" might also include: 1) The prerequisite of humility. Clinicians should never lose sight of the power they wield, of the utter havoc that a few words can wreak in a patient's life 2) The need to help the patient navigate uncertainty. Despite the widespread abandonment of traditional diagnostic methods in favor of statistical analysis and computer algorithms, medical diagnosis and treatment remain an inexact science. The issue is not the accuracy of the diagnosis but the recognition that it is a process: the clinician must be proactive in discussing with the patient any extended delays or sudden changes. 3) The need to model sensitivity. Given the dearth of primary-care physicians and the proliferation of urgent care facilities, a specialist may well represent the patient's only chance for discussing her condition.
Competing interests: None declared
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Competing Interests: None declared.
Published on: (27 March 2018)
Page navigation anchor for Reducing Physician Guilt May Promote Healing
Reducing Physician Guilt May Promote Healing
Larry B Mauksch, Clinical Professor Emeritus
I have asked hundreds of patients to think about the best physicians they have ever seen and what makes those physicians "the best." Ninety percent of patients answer the same, "they listen". Over my years of teaching these skills to our family medicine residents, I recall a humorous but sad recurrence. In anticipation of seeing a patient with a chronic and debilitating condition, I coached residents to spend a few curi...
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I have asked hundreds of patients to think about the best physicians they have ever seen and what makes those physicians "the best." Ninety percent of patients answer the same, "they listen". Over my years of teaching these skills to our family medicine residents, I recall a humorous but sad recurrence. In anticipation of seeing a patient with a chronic and debilitating condition, I coached residents to spend a few curious minutes listening, empathizing and reflecting. The successful residents often emerged from exams rooms expressing anticipatory guilt. "I listened but I feel guilty about billing".
The preoccupation with cure characterizing the practice of medicine leaves too many patients dissatisfied and too many physicians feeling impotent. In Dr. Egnew's essay on using narrative skills to promote healing I found an eloquent, comprehensive and compelling educational resource to help physicians become more effective healers. I love the notion that listening for suffering requires more acute skills than simply listening to the illness story.
For those who do not know Dr. Egnew's work, this article sits on top of a foundation of related publications. He has documented the absence of teaching relational and communication skills in physician role models and the ubiquitous avoidance of recognizing patient suffering in medical education. He has also described faculty development strategies to improve how we educate future generations of physicians to be healers as well skilled, curative clinicians.
I sincerely thank Dr. Egnew for this essay. It offers educators and practicing physicians a guide for reflection and practice. I hope it is the focus of many seminars and journal clubs at all levels of professional development. Among its potential contributions is that it may help improve satisfaction in the practice of medicine.
Competing interests: None declared
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Competing Interests: None declared.
Published on: (27 March 2018)
Page navigation anchor for Learning to Care, Learning to Heal
Learning to Care, Learning to Heal
William R. Phillips, Professor Emeritus of Family Medicine
By placing narrative squarely in the patient's experience of, and the healer's approach to, suffering, Tom Egnew points to a path by which physicians can "claim their heritage as healers."(1) The first steps might be to claim our heritage as teachers. Unfortunately, from Egnew's related research, we know that medical students tell us that suffering is not a part of their formal medical school curriculum and that they rarel...
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By placing narrative squarely in the patient's experience of, and the healer's approach to, suffering, Tom Egnew points to a path by which physicians can "claim their heritage as healers."(1) The first steps might be to claim our heritage as teachers. Unfortunately, from Egnew's related research, we know that medical students tell us that suffering is not a part of their formal medical school curriculum and that they rarely encounter role models who demonstrate or value the essential clinical skills.(2) As physicians who traditionally walk with patients through transitions of life and across arcs of illness, suffering and loss, family physicians are suited to lead the transformation needed in both medical training and clinical care.(3,4,5)
In the selection of faculty first and learners later, we need to look for the qualities of spirit, the habits of mind and the devotion to care that support attention to suffering in patients and families.(6) We need to develop and master specific clinical skills in the recognition, identification, management and relief of human suffering. We need to develop systems of care that move beyond protocols for fixing problems and emphasize the importance of caring for people. If healthcare systems are to deliver care, they must make time for the narrative process, for seeing, hearing, and witnessing suffering.
References:
1. Egnew TR. A narrative approach to healing chronic illness. Ann Fam Med. 2018; 16(2): 160-165.
2. Egnew TR, Lewis PR, Myers KR, Phillips WR. Medical student perceptions of their education about suffering. Fam Med. 2017; 49(6): 423-429.
3. McWhinney IR. Illness, suffering and healing. In: A Textbook of Family Medicine. 2nd Edition. New York, NY: Oxford University Press; 1997: 83-103.
4. Scott JG, Cohen D, Dicicco-Bloom B, Miller WL, Stange KC, Crabtree BF. Understanding healing relationships in primary care. Ann Fam Med. 2008; 6(4): 315-322.
5. Hsu C, Phillips WR, Sherman KJ, Hawkes R, Cherkin DC. Healing in primary care: a vision shared by patients, physicians, nurses, and clinical staff. Ann Fam Med. 2008; 6(4): 307-314.
6. Egnew TR. Suffering, meaning, and healing: challenges of contemporary medicine. Ann Fam Med. 2009; 7(2): 170-175.
Competing interests: None declared
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Competing Interests: None declared.
Published on: (26 March 2018)
Page navigation anchor for Beyond the individual clinical encounter: suffering and story as social and public
Beyond the individual clinical encounter: suffering and story as social and public
Peter J Whitehouse, Physician
Other Contributors:
This article brings appropriate attention to the role of narrative in holistically addressing chronic illness. Personalized medicine organized around molecular genetics has offered a promise that is not only failing in practice but is also excessively reductionist and often experienced as dehumanizing by patients. Knowing a patient's story is of course key to a genuinely individualized and effective therapeutic relationsh...
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This article brings appropriate attention to the role of narrative in holistically addressing chronic illness. Personalized medicine organized around molecular genetics has offered a promise that is not only failing in practice but is also excessively reductionist and often experienced as dehumanizing by patients. Knowing a patient's story is of course key to a genuinely individualized and effective therapeutic relationship. But to fully appreciate the importance of suffering and the power of narrative the clinical encounter should also be contextualized in broader social spaces.
For example, Alzheimer's disease is a heterogeneous set of chronic conditions related to aging. Yet how patients suffer with the phenomenology of age-related memory loss depends in part on how they, their families, and extended social networks perceive and organize their beliefs and actions around the social construct of so-called "Alzheimer's". Will the patient and these stakeholders put their faith in medicines, or in individual brain fitness activities and consumer products, or will they seek and find meaning and purpose in sustaining relationships and experiences within a community? And how do dominant scientific and political-economic models influence the types of clinical conversations we can have?
Since the 1970s, when the category of "Alzheimer's disease" began replacing the notion of "senility", the dominant explanatory model for Alzheimer's has driven us towards addressing age-related suffering as something that can be cured by biology rather than being cared for by community. Moreover, over this same timespan it has become clear that neoliberal market fundamentalism is creating ill health, including driving risk factors for dementia through income and wealth inequity, austerity politics and retrenchment of social services, increased precariousness in the modern workplace, environmental deterioration, and a creeping alienation that has weakened the solidarity of modern communities and the protective ties that connect people to public and political institutions and to each other. This contextual suffering is in the background of the clinical encounter, and perhaps deserves greater explicit attention as part of the conversation with patients and their families, with colleagues, and with the rest of society.
Competing interests: None declared
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Competing Interests: None declared.