Packing for New Jersey to help Bernie (my father-in-law, whom I was honored to call “Dad”) navigate his transition from hospitalization to SNF, something told me to pack a suit.
I did consider the possibility that Dad wouldn’t make it. He was 91 after all, with end stage renal and heart disease. And yet, just a week prior, he was living independently and doing well — sort of.
When we spoke, he told me that he was ready to die, and that he looked forward to being reunited with his beloved Elaine, his wife of 67 years. His plan was to sunset his dialysis and go home or to a SNF, most likely on hospice.
A few hours after this heartfelt conversation, a young internist from the cardiology team bounded into his room and wondered aloud why he never had a transcatheter aortic valve replacement (TAVR).
“It would add quality to your life!” she exclaimed and proceeded to describe how this “noninvasive” procedure was an absolute miracle since it had been perfected in recent years. “Dialysis would become effective again and your quality of life would improve,” she said again without pause.
Short of any prior history or conversation, this well-intended physician was challenging and changing the course of my dad’s care plan and expressed wishes.
What does “quality of life” mean to this young cardiologist in her early thirties? I’m not sure. Dad had already expressed his own interpretation, both in his advanced directive and verbally to his caregivers, when he was admitted to the hospital. So I caught the next flight to New Jersey to be with this cherished man and my family, but seemingly also to run interference at the hospital bedside.
“Your father-in-law is a full code,” replied the nurse when I respectfully stated that I wanted to quadruple check that his code status was well known and documented. Here I thought I was being redundant – and annoying — to this busy team. After all, the family had presented a paper copy of his signed advance directive upon his admission to the hospital, and Dad was well-known here.
Ultimately, the scanned copy of Dad’s advance directive was found and it clearly stated DNR/DNI. This essential information had been entered into the wrong field in the new electronic record. We were told the hospital recently went paperless (and DNR/DNI stickers on the chart are passé!).
Bernie was the kind of guy who wanted to live life to the fullest. Sometimes that got him in trouble, but that didn’t stop him from taking chances and rolling the dice. The TAVR, as it was presented to him, seemed to fall into the category of “take a chance.” He and I spoke about the challenges of this procedure on his weak heart, but he decided to move forward. This was not the decision I would have made, but it wasn’t my decision to make.
Little research is available on TAVR for someone with his comorbidities, and the evidence that does exist is not overwhelmingly encouraging regarding rehospitalization and survival rates. All this was shared with Dad and the family, yet we were determined to protect his right to make his own decisions.
Over the course of two days, “step two” of the procedure was scheduled, canceled and rescheduled, along with additional diagnostic tests that had been not previously disclosed. It took four family members (two Ph.D. holders and two master’s-prepared clinicians) at the bedside to compel the care team to better communicate and include Bernie in this seemingly arbitrary process.
It may sound like we were unhappy with his care; we were not. We thought his care was excellent. The nursing staff and physicians were great. Instead, it was both the lack of coordination (true person-centered care) and a newly implemented electronic health record that seemed most responsible for the hiccups.
When it was clear that Dad was not going to survive the procedure, the structural cardiologist asked what we’d like him to do. As a family, we honored Bernie’s wishes and let him go when the time came.
We were granted the greatest honor of being able to cuddle him, kiss him goodbye and while holding his hand, recite the Shema, the Jewish Declaration of Faith. The moment between life and death is sacred in Jewish tradition as the passage marks the conclusion of our journey on earth and heralds the entry of the soul into eternal life. We were filled with a sense of that holiness.
It was not a coincidence that I found that the lyrics to Frank Sinatra’s “My Way” laying on top of a stack of papers in Dad’s bedroom back at his apartment. Nor was it a coincidence that he asked me to sing this to him right before he went in for the procedure during which he died. Bernie most certainly did it “His Way,” making choices that were right for him with the information he had.
I think about the long-stay frail elders living in your nursing home … and your own parents and grandparents. Fourteen percent of them are hospitalized annually. Of those frail elders who go to the hospital, more than 16% are at the end of life.
Who is there advocating for them? How well are their own wishes being safeguarded? Are we prepared to sing their version of “My Way?”
Steven Littlehale is a gerontological clinical nurse specialist, and executive vice president and chief clinical officer at PointRight Inc.