Abstract
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My mother's motto was “never stop learning.” My variation of this mantra has become: “Always learn from anyone and everyone under all circumstances; especially from our patients.” When first we met just a few days ago, Miss Beverly reminded me of my mother. The medical facts are relevant; yet, more relevant was her demeanor of long suffering, serenity, and tranquility in the midst of advanced dementia. She came to the outpatient palliative care clinic with her husband and two daughters, who verified what I had read in her medical record; they emphasized the inevitable and irreversible progression of her suffering. The toll on the family permeated the milieu; yet, their resilience manifested as compassion and advocacy for their beloved wife and mother. They could have been overtly angry or hostile; they were not. Empathy reigned in her praise. They knew that in the midst of this life, she was facing her death. I am often amazed, perplexed, and astounded at the equanimity, patience, and forbearance of those who suffer (in this case, the patient and the family).
Miss Beverly was well cared for at first glance. Her left hand in my hands exuded comfort. Her eyes conveyed both pain and joy. She answered questions and interacted with a connection as genuine and visceral as is possible for her advanced stage; the family seemed pleased at her level of verbal and nonverbal communication. Judging pain is axiomatically challenging; it is a personal experience—never what I think it is. It is always what the patient confesses. Her eyes then yielded a suffering that the family articulated too. After customary medical queries regarding the appropriate historical details, it was clear that her pain had been underdiagnosed and certainly undertreated. Furthermore, medications that had long lost their utility had been continued with nil benefit and the ever-present potential of burden.
The conversation moved the goal easily to the present and the living, to alleviate her suffering (and theirs too). We stopped several medications and added two symptom-driven medications for her pain and agitation.
Lastly, we reviewed her living will, advance care documentation, and designation of healthcare surrogacy. I suggested the optimal strategy, to meet the patient's best interest was to enroll in hospice, sooner rather than later. It might have seemed premature; yet, experience has taught me that it is never too earlier and so often too late.
Michel de Montaigne counsels: “All wisdom and reasoning in the world do in the end conclude in this point, to teach us not to fear to die.” 1
Much to my surprise, Miss Beverly died shortly thereafter—just a few days before Mother's Day.
In the midst of life, we are in death. Media vita in morte summis. This Latin liturgy seems most apropos. Life is inexorable, inevitable, and irreversible. Pain is unavoidable in life. Suffering is not, nor should it be. She and her family suffered needlessly.
“The trappings of death are more terrifying than death itself,” declared Francis Bacon. 2 The trappings of death in this case created the suffering.
If the above is true, so is the converse: “In the midst of death, we are in life.” So claimed James Joyce in Ulysses. 3 Miss Beverly's family demonstrated it in their minute-to-minute, day-to-day life by enjoying their moments through to her end. In a most gracious telephone call to me, I learned that our goals manifested within hours of commencing the plan of care to stop the unnecessary medications and start the pain medications. Furthermore, Miss Beverly seemed to brighten and interact even more as the family gathered. They described their tender and intimate final moments and goodbyes with such emotion that the spirit of love, compassion, and empathy filled the void separating my office and their home. The lump in my throat, the sadness of my Mother's Day anniversary grief, and the vivid contrasts and parallels in these deeply spiritual moments recapitulated and defined the “why” of my call to serve.
Thank you, Miss Beverly, for being my mother on this Mother's Day, and so, my mother teaches me again.