The most loving thing: end of life and saying goodbye

“Grandma fell and we’re in the emergency room. She’s very distressed and does not look good. I’m going to put the doctor on the phone.”

I could hear my mother’s voice strain on the other end of the phone line as I braced myself for my conversation with the emergency department physician.

The emergency physician told me that though the work-up was still developing, my grandmother was in respiratory distress, and that he recommended we intubate my 85-year-old grandmother and admit her to the ICU.

This was the moment that arrives for so many families, being forced to make a quick life-defining decision for the people we love, wishing we knew beforehand what they would’ve wanted. Sure, she had recent hospital visits for a mini-stroke and pulmonary concerns, but this couldn’t be it, could it? I was paralyzed, wholly unready to say goodbye to the grandmother I had spoken to just days before, the person who always answered my phone calls after one ring with an infectious, “Hello gorgeous!”

I shared with my parents the physician’s assessment, but when asked what I thought we should do, I wavered.

Faced with this impossible decision, we consented to intubation and admission to the ICU.

As a medical student, I wondered if my grandmother would ever come off her ventilator and how she’d feel about spending her final days in an ICU. I wished that in addition to my grandmother’s lab values, one of her physicians would tell me her prognosis was serious, and asked me what mattered most to us knowing that she likely would not recover.

After several days of following my grandmother’s care, hanging on for a recovery that would never come, we decided to discontinue life support and instead focused on comfort in the palliative care unit.

I arrived at my grandmother’s hospital room to find her cycling through sleep, confusion, and brief moments of just enough clarity to understand she was surrounded by family. As the hours passed and the day waned, one by one we told her we loved her, promised to visit soon, and said goodbye.

Before he left, my oldest brother asked we all clear the room as he whispered the closely held secret of the name of her soon to be born first great-grandson, one she’d never have the joy of meeting.

She passed away the next day.

Before my grandmother’s passing and since, I’ve caught myself feeling uneasy about family decisions to pursue “heroic measures” in the final moments of a loved one’s life. That thinking is misguided, or at least incomplete.

As I continue to encounter moments like this as a physician, I’d do well to remember my own paralysis when faced with offering advice on what to do for my grandmother. I’d do well to remember how hard it is to make decisions about the end of life if all you’ve been told is how to extend it, without the perspective that you might be at its end. I’d do well to remember that though her ICU stay may have given my grandmother but a few days extra on this earth, those days offered me the time to find my way to her bedside to say one final goodbye, and may do the same for families faced with a similar decision. I’d also do well to remember that my grandmother’s ultimate peaceful passing was not pre-ordained, and that with no physician to share the understanding that time may be short, too many patients and families may be robbed of the time they have.

A physician once told me that saying goodbye to a loved one at the end of life is perhaps the hardest thing a family will ever have to do, but also the most loving thing they may ever do. Similarly, telling a family their loved one may soon pass is one of the hardest things we’ll ever do as physicians, but also the most loving.

It’s also the loving thing we too often avoid.

We avoid discussing death with patients and families for fear of robbing them of hope. But the understanding that we’re nearing the end of life does not need to mean giving up hope, but rather reframing what to hope for. I wish I spoke with my grandmother sooner about how and where she’d wish to pass, and what she’d hope for at the end. I hope I don’t leave patients and their families wishing the same thing.

Their lives may not depend on it, but their deaths do. And that’s just as important.

Jonathan Staloff is a medical student.

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