The Invisible Pull of Inertia
...weighs in favor of one's comfort
As is often the case when people are living with serious illness, re-entering the hospital becomes part of the routine. Given that my time working in the hospital is episodic, typically spanning one-week intervals, it is the exception rather than the norm that I get to re-enter their lives. Such was the case with Mrs. Santiago1.
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I smile when I come face-to-face with the at-once-familiar, handwritten sign on her door instructing all visitors to, "Please knock before entering." Despite knowing Celia would certainly prefer to be almost anywhere other than the hospital, I am selfishly elated to get to see her again. The first time we met was on a Friday, and therefore my last day on service. Today is a Monday, meaning I potentially have several more days to explore with Celia. I had no idea how rare a gift of a second chance our meeting would prove.
Many doctors are gathered just outside her door: pulmonologists. They are discussing how best to demonstrate Celia’s need for home oxygen therapy so that insurance will pay for it. Certain benchmarks, specifically lab values and/or physiological test results must be met, or in this case, failed, for insurance to cover the expense. What a doctor or patient has to say about the situation, as in how oxygen may make a person feel, unfortunately doesn’t factor into the determination. Such is the way of many things in medicine.
For better or worse, exceptions do exist. In some instances, the word of a single physician can determine an individual’s fate.
The life expectancy of a person living with the genetic disease Celia was born with is significantly shortened with each recurrence of infection. The only possibility of changing that trajectory is to undergo a lung transplant. Celia's most recent hospital records repeatedly state she is “not a transplant candidate.” In fact, it was that very dictum that prompted my first encounter with her months earlier to discuss her wishes at the end of life.
Transplantation is anything but straightforward. Many criteria must be met to meet the eligibility standards. Even then, eligibility far from guarantees a transplant. Furthermore, it is a high-risk procedure that requires significant lifestyle changes to prevent organ rejection. Any hint of a patient’s inability to follow orders is quickly labeled as "non-compliance"—an immediate strike against their transplant candidacy. No one wants to risk the loss of an organ that could help another patient get a second chance at life.
Exploring Celia's medical chart, I notice several notes beginning with, “Patient is a 28-year-old female, non-compliant ..." as if it were her middle name. It strikes me as odd that someone so young and otherwise healthy would be considered ineligible for becoming a transplant candidate. So, I decide to ask Celia.
"Have you ever considered exploring transplantation?"
Celia's reply is as thoughtful as all her others. "I would have to relocate to the US full time, which could mean becoming permanently separated from my husband. I'd rather have a shorter life knowing I can be in control of spending some time together."
I begin to wonder if Celia's preference to not relocate to the U.S. is being interpreted as “non-compliant” and find this conclusion unsettling. Searching her medical record for any data that could have made Celia “ineligible,” I find nothing. In fact, just a few years earlier, while she was still being cared for by her pediatric pulmonologist (adults living with chronic childhood illnesses often stay affiliated with their pediatric attending physician well beyond the age of 18 due to their long-standing relationship and deep knowledge of the disease), her pediatrician considered Celia a good transplant candidate.
I can’t understand what has happened. Why the switch? So, I ask Celia why she has changed physicians.
“I didn’t want to,” she says matter-of-factly, “He died.” And with him, all hope for a transplant.
Though many colleagues might consider exploring and potentially bolstering Celia's candidacy for lung transplantation outside the scope of palliative care, I know that this is absolutely consistent with the core tenants of palliative medicine: identifying and then advocating for what people truly wish.
“If you were considered a candidate, would you be interested in pursuing this line of treatment, knowing it would mean a long, though not permanent, separation from your husband?”
No pause for contemplation is needed.
“Yes.”
My job is now clear. I have to reach out to one of the members of the transplant team and ask them to reconsider.
I rehearse a concise overview of Celia's medical record before paging Dr. Lo, the lead pulmonologist on the committee.
Dr. Lo's response to my 30-second pitch takes me by surprise.
“So, you want us to take a fresh look at her to see if she would be a transplant candidate?”
“Yes.” I hold my breath in anticipation of refute.
“I’m on it.”
That is all Dr. Lo says. It is also the last I and my team ever hear. We are not invited to meet with the transplant committee. We are not part of the calculus.
In the meantime, I furnish Celia with contact information for an attorney who specializes in deportation law to see what dispensation can be sought for her husband. We write letters of support for her to the transplant team, to the consulate, to her insurance, to whoever will listen. The day I go off-service, Celia goes home, with oxygen.
Several months later, it is time for my annual review with the palliative care division chief. Chiefs are required to periodically review the quality of each team member's work to make certain we are practicing our specialty appropriately. This includes reading some of the clinicians' patient notes to assure documentation is accurate and clinical skills are adequate. We begin sorting through notes at the bottom of the alphabet, "Just to mix things up," my chief suggests.
Scrolling the list, I quickly come upon Mrs. Santiago. "I took care of her a couple of times. Should be plenty of notes to choose from.”
“Great! Oh, and look. She’s in the hospital right now!" my Chief exclaims. "Let’s review your notes first, and then we will see why she is back.”
I have little anticipation as the most obvious reason for admission will be due to another infection.
Opening her most current progress note, I become empathically short of breath.
Post-op day 8 from bilateral lung transplant.
Patient is walking and eating a regular diet….
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Do I feel responsible for her new lungs? I know many people were involved and one in particular made the ultimate sacrifice for this to happen. But would it have even been possible had I not been curious about the liberal use of the terms "non-compliant" and "ineligible" in her medical record? In many regards, it would have been far easier for me and others to have left things as they were rather than doing the work of re-excavating her wishes. Inertia is an invisible pull that weighs in favor of one's comfort. Had I met Celia earlier in my career, I am not sure I would have had the capacity to question. The desire to listen deeply, trust curiosity and ask unassuming questions is difficult to nurture in an environment focused on numbers. Only when wonder is fully present, when we are listening from a place of what matters most, are we best able to align medical care so it solely enhances and actively avoids disrupting the quality of life an individual defines as worth living. Listening for these heart sounds takes practice. The kind that fills a lifetime. It is a practice fueled by love.
The initial magical meeting with Mrs. Celia Santiago can be found in Blessing a Life.
Do you know what else Love can fuel? Teaching more people how to be curious and advocate for discovering what matters most. Learn how your tax-deductible donation can help by clicking the button below.