The ‘good’ death that could have been much better

The alarm clock sounds, a painful reminder that it’s my week to cover the intensive care unit. I take off my favorite sweatshirt, stripping away its warmth and comfort. I jump into and out of the scalding shower, racing to get ready. Making my way toward the kitchen, I roll my eyes at my teenage daughter who is eating ice cream and waffles for breakfast. Her ride waits out front, but before she escapes I get a rare hug, her wet hair cool as it brushes against my cheek.

I spy her melting, unfinished breakfast and shovel what’s left into my mouth. The cold vanilla ice cream and maple syrup drips down my chin. Wiping away the evidence of my indiscretion, I get into my jeep with the top down. The 20-minute ride is a guilty pleasure, with the spring air cool across my face. The coffee in my hand warms me from the inside out as I make my way to work.

Mrs. Valentine’s family waits for me in the ICU. The overnight nurse has already filled me in on the evening’s events. The family has come to a unified decision, and they have called friends and loved ones from near and far. Their mom has been on a ventilator for six days and continues to get worse. Her pneumonia and kidneys are the most urgent problems, leaving her dependent on a ventilator and dialysis. But underneath the surface, her lung cancer is the real culprit. What started as a time-limited trial to see if her lung infection could get better had now run its course. The family knows we are no longer helping her to live; we are prolonging her death. This is not what she wanted.

With her family at her bedside, intravenous drips of morphine and lorazepam are adjusted, until her breathing is relaxed and unlabored. The restraints on her wrists that had prevented her from pulling out IVs and tubes are removed and the monitor is turned off, no beeps or flashing numbers to distract. The guardrails are pulled down and her hands are held by her tearful but resolute family, all at her bedside. The breathing tube is removed and exchanged for gentle humidified oxygen over her nose and mouth.

Her nurses continue their vigil, focusing now on her breathing, assuring that it’s easy and peaceful. They watch her face, monitoring for tension in her brow or any other subtle signs of stress. Family friends drop in to offer support. The chaplain is nearby. And three hours later, as the time between breaths grows long, she takes her last breath.

She’s gone, peacefully and quietly.

In my ICU, this is a “good” death. Without shocks, chest compressions, or drama. Her family at her bedside throughout.

Yet we failed her. We could have done better. We should have done better.

We failed her in medical school. We spend countless hours in the anatomy lab but barely a few hours learning communication skills and palliative care. We read books on diseases and their cures, but only a few handouts on how to provide comfort. Eager and enthusiastic future doctors are well-prepared to treat sickness but ill-equipped to face the challenges of managing death.

We failed her when too many residency programs did not actively introduce, teach, and model talking about goals of care. We teach residents how to engage patients with pointed queries on the presence or absence of signs and symptoms, but leave them unprepared to deal with the wide open responses to open-ended questions about the dreams, goals, and fears of patients facing their own mortality. We fail residents by not acknowledging the shame we feel when we cannot cure, and the distance that can create between us and our patients. But when we cannot cure, we can comfort. And we miss showing residents that when we feel most helpless, we can still affect our patients in powerful and meaningful ways as they move towards death.

We failed her by not having mandatory palliative care consults concurrent with her cancer diagnosis. Studies have shown that palliative care does not necessarily hasten death, but often prolongs life with better quality.

We failed her when doctors did not stand up to the medical industrial complex. It is human nature to believe that more of something is better than nothing. And big industry is more than happy to encourage more testing, imaging, and treatments. It distorts marginal benefits while minimizing toxicities and side effects, monetizing patients’ optimism and hope for the benefit of stockholders and CEOs.

We failed her as a society by avoiding difficult conversations. End-of-life discussions are the exception rather than the norm. Sports and politics, along with our smartphones, dominate dinnertime, making it easy to ignore issues of our mortality. By avoiding talking about death, we fail to discover what it means to live.

We failed her as her doctors. Had she and her family been armed with more information and more choices, she might have chosen a path quite different.

Maybe, just maybe, she would have opted to be cared for in the comfort of her home, instead of in a cold, sterile intensive care unit. She could have been in her own bed, wearing her own sweatshirt, soft and warm, enjoying waffles and ice cream, with syrup dripping down her chin. Enjoying a hug from her daughter, with her wet hair brushing against her cheek. Feeling a spring breeze from the open window on her face as she takes her last breath.

Jeremy Topin, MD, is a pulmonary and critical care physician at Northwest Pulmonary Associates in Chicago. This article originally appeared on his blog, Balance.