Imagine this - CMS, a bearer of gifts! From the publication of the "new" Conditions of Participation in 2008 through the most recent Part D requirements, CMS has mandated that we, as hospice physicians, step up to the plate and describe, in narrative statements, our patients’ stories:
- Why they are terminally ill (certification of terminal illness);
- Why they continue to be appropriate for hospice care (recertification); and
- Why we feel, based on our clinical knowledge and judgment, that the stories of our patients' dying do or do not include certain illnesses and conditions (relatedness).
And why, might you well ask, is that a gift?
By mandating that physicians write these critically important narratives, we have been acknowledged and affirmed as that which we have always been: keepers of the medical hiSTORY of those for whom we care. As physicians, we are used to telling patient stories both verbally and in written form: in daily rounds starting in medical school and residency, at transition points of our patients throughout the continuum of care, in the venerated forum of Grand Rounds, in admission and follow-up notes, in discharge summaries.
If "sickness unfolds in stories" as attested by Dr. Rita Charon, an internist and one of the pioneers of Narrative Medicine, then does not dying unfold in stories as well? And who better to synthesize the varied elements of that story for documentation in the clinical record than the one entrusted to "attend" the patient along their final journey?
The physician storyteller is not a product of the 21st century. We come from a long lineage in the western tradition: Hippocrates the father of western medicine, Luke the physician/disciple, Anton Chekhov the writer. And storytelling in hospice medicine (by way of the narrative), as in any other field, has a purpose. The narrative is not foremost as a protection against adverse governmental scrutiny, but more importantly as a vehicle that allows for connection, for deeper understanding, for whole person, wholehearted care and service. A story well told is not grounded in an attitude of fear and defensiveness, but one of openness, vision and creativity.
The physician narrative, in the record of the hospice patient, is a statement hopefully informed by examinations of and conversations with the patient and/or family when possible, the written medical history to date, and the rich contributions of the observations and assessments by members of the interdisciplinary group. Justification of the "6 months or less" prognostication underlies the purpose for the narrative. Prognostication is both an art and a science -- albeit not exact. Accordingly, our narratives should speak to a mix of these two: quantitative data, evidence-based reasoning, and qualitative descriptors based on conversations, on keen observation (direct and indirect), and on intuition born of experience. In other words, the oft-bandied hospice admonition to "paint the picture"! With all the data at hand, we, as (re)certifying physicians, are able to compose the who, what, where, and when of our patients’ “dying story.”
What if physician narratives were read at IDG meetings? Imagine asking our patients and families, when possible, how they would assess and describe their condition and including that in our narrative? If we had these scenarios in mind rather than the feared surveyor, would it impact what we wrote? Are there hospice-specific processes in place that allow for the certifying physician to truly mine the ground of hard and soft data before composing the narrative statement?
The field of Narrative Medicine is alive and well. It encompasses far more than what we may do when composing a brief narrative statement. However, some of the concepts of Narrative Medicine -- the honoring of patient-centered care, the recognition that illness manifests in individually specific ways, the recognition that both patients and clinicians have voices that can be expressed and bear hearing and affirming -- these are tenets that we hold dear in hospice and palliative medicine. What better area might there be for Narrative Medicine to find a home than in the specialty that is based on the relief of suffering, interdisciplinary care, and the focus on the patient and family as the unit of care? Even our regulatory bodies seem to nod in agreement as they write into their regulations more language focusing on physician narratives. And in my limited experience with defending length of stay cases before an Administrative Law Judge, they have responded favorably when able to hear the ‘full story’ with its nuances and complexities.
The power and possibility of the narrative is great. In those few paragraphs, we are to carefully craft factually sound statements that summarize the complexity of terminal illness and document the structural and functional decline of our patients. Our narratives weave from a myriad of somatic and psychosocial/spiritual issues the person-specific story of dying. What is regulated is that it does indeed need to be a story written in full sentences and with inclusion of all the elements that will allow the reader to understand where our patients lie on their trajectory towards death and, equally important, what their individual experience is on that journey.
Let's gladly and gratefully own that responsibility. With our pen, or with the tap of our finger, we have the ability to create a large piece of what is most often the last written story of those who are approaching life's end. What an honor and a privilege!
Thank you, CMS, for your gift. To my colleagues, I’d love to hear your thoughts and experiences. Here’s to you, and to great narrative statements.
S. Karefa-Johnson, MD
 Charon R. At the Membranes of Care: Stories in Narrative Medicine. Acad Med. 2012 Mar; 87(3):342-7
Posted by Suzanne Karefa-Johnson, MD Physician Consultant, Weatherbee Resources, Inc.