I recently had the experience — fortunate, I guess — of being with my mom when she died. I had to write the obituary shortly after she exhaled her last breath, before the funeral directors came to retrieve her body. And though I wrote that my mom had died "peacefully" at home, in truth, I wasn't sure if her passing had been peaceful or not.
In an Aug. 2 New Yorker article ("Letting Go: What Should Medicine Do When It Can't Save Your Life?"), Dr. Atul Gawande chronicles the desperate measures some folks diagnosed with a terminal illness will take in hopes of prolonging their lives. The article also points out what should be obvious: If one has only a limited amount of time left, it shouldn't be consumed and compromised by treatments that diminish the quality of what remains.
Instead, the author seems to argue, the terminally ill and their loved ones should embrace the inevitable by choosing the "peaceful" and "more natural" approach: dying at home in a setting of comfort and love.
After reading the piece, I immediately took the "side" of "yes, of course" in the question of dying at home; of using hospice services to enable that to happen; of just saying no to unnecessary and futile medical intervention. In retrospect, however, I think the article had more to do with indicating the complexities of end-of-life decisions than with identifying a more righteous approach.
Grappling with these difficult decisions involves a number of key and potentially unnerving questions. Where does the dying person prefer to die, at home or in hospital? Who will attend to the loved one’s last breaths, and is that person prepared to provide the final witness? This is not a job for sissies: Once the end has come, a body will be left that will quickly grow cold and stiff, as all lifeless bodies do.
Based on my own experience as well as insights gleaned from Gawande’s article, two highly polarized “sides” seem to be at play in most end-of-life decisions: hospice vs. the oncologists. Hospice warned us against hospitals, bright lights and impersonal medical personnel. The oncologists and other allopathic docs — most of whom supported some form of "treatment," if only for palliative purposes — kept suggesting yet another test, another consultation, the possibility of relieving symptoms.
In the end, we as a family had to decide what to do: What would best serve our mom, and what could we realistically provide? We decided, for her sake, to keep her home so she could have a more “natural and peaceful” experience.
Yet when her time came and I was making 2 a.m. phone calls and administering meds I didn't feel comfortable being responsible for, though I was pretty certain she needed them, I was as rattled as my mom’s breathing. I wasn't sure what I was doing; I wasn't sure my mom was getting the treatment she required. I wondered if she should have been hospitalized where, despite those bright lights, she would have been given the pain meds to make her final exit more comfortable. That our local hospice staff were absent at this crucial moment is a question for another time…
Of course, further complicating things was the fact that this was our mom — the one who'd brought us into this world, the person we had never been without — and she was dying. Emotions ran rampant and raw.
Because the situation demanded it, we rose to the occasion and did what we had to do to ease my mom's passing.
But determining a final exit strategy is a complex business: There is no "right" or easy answer. Death, as Wallace Stevens says, is "absolute and without memorial." Those who assist in the passing can only hope to ease whatever transition may take place.
In the end, I wasn’t convinced that my mom’s death at home was a better experience than it might have been in a hospital.
In saying this, however, I don’t mean to cast aspersions on either hospice or dying at home. For many people, these may be perfect choices, and some say this approach provides a level of care that might not be forthcoming from oncologists jaded by seeing so many cancer patients daily. Nor am I necessarily advocating a hospital death, since I have no proof that this would have been better.
What I am encouraging is a sober look at end-of-life decisions. Perhaps what I learned from my own experience with my mom’s death is to try to be a bit more open-minded, a bit more generous in my own understanding of how people come to make such difficult decisions in the hugely sad context of losing a loved one.
— Asheville resident Virginia Bower teaches writing and ESL at Mars Hill College.