Book Recommendation and a Story, Being Mortal: Medicine and What Matters in the End

Vigor Is Fleeting – A Story And a Book with Purpose

It’s hard to pick a favorite story (all true) from Atul Gawande’s Being Mortal: Medicine and What Matters in the End. Each character broke my heart and earned my respect for different reasons.

Alice’s story stays with me daily though, seeping into my subconscious and sleeping hours. She was an amiable character, who grew unhappy with sacrificing independence in the decline of old age after admirably maintaining it for so long.

She lived alone for decades after the death of her husband, took care of her home herself, did her own shopping, went to the gym with a good friend regularly, and had no major illnesses, procedures, or hospitalizations  — beyond cataract removal and dentures — up until age 84. A couple of falls and a few serious memory lapses later, and she had to live in an assisted living community.

Gawande said she “didn’t like being nannied or controlled.” But the root of her unhappiness stemmed from her desire to “be helpful, play a role” (75) like she used to do via making jewelry and volunteering at the library.

Those parts of her remind me of my own aging father. He’ll be 74 on Christmas. He’s stubborn about maintaining independence and sometimes genuinely misses his tiny, grungy apartment. He most yearns for his cyclical routines and usefulness found in his work, hunting, and fishing.

Like Alice, always charming and pleasant, no matter how badly he feels, Dad’s lost his spark over the past few years after a series of heart attacks, triple bypass surgery, a bad case of pneumonia, and a bleeding ulcer incident where he lost ~40% of his blood supply, necessitating several transfusions.

Dad’s boss and physician coerced him into retiring from his construction career after his heart attacks. Then our family coerced him into the risky, invasive bypass surgery, despite his reservations.

My dad is a pretty passive people pleaser, but when he gets mad, all of his mounting frustrations come roaring out. That anger was uncomfortably and palpably present amidst triple bypass indecision.

He didn’t mind waiting on the “next big one”[heart attack] as much as he minded the stress of signing his life away to a myriad of truly horrible possible surgical complications. He was most terrified of an unconscious death on the cold, sterile, operating room table.

The night before surgery was bizarre. I’d never seen Dad so unsettled or vulnerable. He made jokes about it, but isn’t comedy our greatest coping mechanism? His breathing and focus were all over the place.

At one point, I handed him all the papers he had to sign. His eyes got big, he half shook his head, let out an exasperated “phwooo” sound, and put the papers back down. I just pointed where he had to sign on each. Then we, with my sister, walked up and down the hallway talking about the seasonal paintings on the walls.

When we got to the winter scene, he laughed about how this was a “hell of a way to spend the holidays”. His own father died on Christmas (i.e. Dad’s birthday) many years ago. Circle of life can be ironically predictable.

dad-2
A happier Christmas memory from the late 80s/early 90s. Beth, me+cat, Chris, Dad.

I remember being overly optimistic and refusing to let Dad talk too much about his worst-case-scenario fears. Everytime my eyes started to well with tears, I’d desperately choke them back. I needed to exude nonchalance. I needed him to focus on how great he’d feel the same time that next year. I didn’t want to entertain any other narrative, so I wouldn’t let him either.

Looking back, especially after reading this book, I regret behaving this way. But it felt like the only way at the time.

He was in the hospital for Thanksgiving and Christmas. He was in ICU for 13 days, I think. After Dad woke up from an almost six hour surgery, all seemed well. Then not so well. Hospital staff signaled Dad had internal bleeding somewhere and they’d have to open his chest back up to fix it.

It was a snowy and icy night. The surgeon called the staff back for emergency follow-up surgery immediately. I remember worrying about them, getting to the hospital in time. The roads were terrible — black ice everywhere. Surgeons don’t drive SUVs and trucks, are their BMWs going to make it?, I wondered. I bet their families were irked by their need to leave home so suddenly, so late, in such weather.

I had already driven from my hometown of Roanoke, VA back to Baltimore after my hallway walk with Dad the night before. I’d been in town for a few days leading up to surgery, but had to get back to work in the city. My mom, sister, and brother were there with him.

I was exhausted and ended up working at home after a morning meeting. I paced all day waiting for the phone to ring. Mom said she’d call as soon as Dad was out of surgery. They said it’d take up to 5 hours, but the 6th hour was approaching. Mom called. I sighed a breath of relief. After dinner that night, Mom called again, more frantic. Dad was going back in surgery to stop some sort of internal bleeding.

I know he put his body and mind through all that stress partly, maybe mostly, because I had just gotten engaged that summer. Mom made him feel guilty about not being able to walk me down the aisle if he decided not to give surgery a chance. That was her selling point and it worked.

dad-wedding
Dad walkin’ me down the aisle.

As grateful as we are to have him around, I still feel guilty about guilt-tripping him into a surgery he didn’t want. Although he hasn’t had another heart attack in the past 3 years, his quality of life has rapidly declined.

Retired with too much free time and too little money, Dad once pseudo-sarcastically said, “I wish I’d died working on a roof or something somewhere. No shit.”

He’s on over a dozen medications to control his atrial vibrillation, high blood pressure, and congestive heart failure. I think he might take something for depression now because of Mom’s incessant urging. He needs to be connected to an oxygen machine all night long, and probably all day, but he’s most stubborn in his waking hours  — only putting it on when “he needs a few hits [of oxygen]”.

The meds mess with his balance. He refuses to use any sort of cane. Last time he fell, he almost cracked his head open on Mom’s desk. Luckily a rocking chair was out of place and dad was able to avoid that trauma by grabbing the arm of that and falling just shy of the edge.

Dad lived in a small apartment with my husband and me for awhile after bypass surgery. His bedroom didn’t even have windows, but it’s all we had. We finally bought a house so Dad could have his own living room and bedroom separately in our basement. But, another health crisis later — the bleeding ulcer, severe kidney damage, and massive blood loss — and Dad needed to be closer the doctors and facilities he was comfortable with at home in Roanoke.

He lives with my mom know. They divorced in 1997. It’s not ideal, but it’s the best option under the circumstances. Family is always family.

fam
All of us together, probably 1990ish.

Dad was a chain smoker his entire life. Even after all he’s been through, he still smokes e-cigs. He lives off meat and potatoes, but mostly consumes coffee, soda, cakes, candy, and cookies. He’s cut back a bit on red meat but still doesn’t eat fruit or veggies. He uses salt and butter in nauseating amounts.

“Brittany Anne. I’m damned near 74-years old. I’ve been eating and living like this my whole life,” he’s told me too many times to count. I guess I just need to let him have his freedom to find joy in his little vices, even if they are killing him slowly.

I’m not sure how Dad’s last days will look. In spite of the inevitable dramatics of death, I imagine he’ll pass quietly and on his terms, like Alice.

Prose with Purpose

I think Gawande’s purpose in writing Being Mortal is threefold:

  • First, to educate readers on the increasingly significant and meaningful purpose of knowledgeable, compassionate, and responsible geriatricians amidst an ever-expanding elderly population.
  • Secondly, to share stories and testimonies of real people experiencing some harsh realities of aging so that we’re forced to feel a connection to them and consider our own inevitably similar fates.
  • Thirdly, in doing so, highlighting subtle differences among each story, urging us to remember that each individual has an innate desire for independence — at least insofar as choosing how and where we live our lives based on what’s most important to us in order to secure some semblance of happiness in spite of sickness, disease, and, eventually, death. As Gawande demonstrates through multiple narratives, this varies on a case-by-case basis as we each face our shared human condition through slightly different lenses.

Dying has transitioned from a very personal, intimate home and family experience — Gawande cited that most deaths occurred in the home as recently as 1945 — to one in which people face some of the most terrifying and final experiences of their lives in a public building surrounded by strangers and loud machines. By the 1980s, Gawande said just 17 percent of deaths were happening at home.

Everyone in the healthcare industry should consider the psychological impacts this transition is having on patients and their families. It’s a topic I know we all struggle discussing… especially with our own loved ones facing the last leg of their own journeys.

Being Mortal helps us open up an important public dialogue that could help us collectively continue seeking ways to improve the quality of life in our final days. The western world is lucky to have come a long way from the poorhouses of Dickens’ days, but we shouldn’t overlook the flaws of the status quo.

Perhaps the first step was outlined earliest in the book. We need to actually reward geriatricians — with job security — in light of the evidence noted in the University of Minnesota study where patients were who had geriatricians were found to be 40 percent less likely to require home health services.

We also need to be incentivizing students of medicine to pursue geriatrics. The New York Times ran a story early this year about the staggering shortage of geratricians across the U.S. In Oregon, for example, there is one geriatrician for every 3,000 residents over age 75.

In the meantime, everyone in society has a role to play: family members, caretakers, healthcare providers, nursing home staff, all of us. We all owe it to our elders to treat them with as much dignity and freedom as we’d want for ourselves. We should all take Thomas’smessage to heart: that “a good life is one of maximum independence” (115).

Moreover, we could follow his lead, aiming to put a little more life into the homes our our beloved elders, while respecting each one’s uniquely individual instructions for life before, during, and just after death. Let’s give them all the luxury of Gawande’s father: not “having to sacrifice his loyalties or who he was” (260).

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