Being Mortal: Medicine and What Matters in the End

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When Worlds Collide: Reflections on "Being Mortal" Through the Lens of Caregiving

In the aftermath of my mother's cancer diagnosis, I found myself drawn to Dr. Atul Gawande's profound book, "Being Mortal: Medicine and What Matters in the End." This thoughtful examination of how we approach aging, illness, and mortality resonated deeply as I navigated the complex journey of becoming my mother's primary caregiver. Gawande's insights provided both comfort and challenge as I balanced the overwhelming demands of caregiving with my own life and work commitments.

"Being Mortal" explores how modern medicine, in its relentless pursuit to extend life, often overlooks what makes life worth living. Gawande argues that we need to rethink how we approach serious illness, seeing it not just as a medical challenge but as a deeply personal, human experience. Through stories of his ailing father, friends, and patients, Gawande reflects on how healthcare can better honor what truly matters to people facing mortality.

What struck me most was Gawande's observation that "As our time winds down, we all seek comfort in simple pleasures; companionship, everyday routines, the taste of good food, the warmth of sunlight on our faces. ". Yet our medical system often prioritizes treatment protocols over these fundamental human needs, treating patients as bodies to fix at all costs rather than as people with personal desires and values.

When Cancer Interrupts Life

My journey as a caregiver began abruptly with my mother's diagnosis. Like the story shared in the book, where a healthy, active person suddenly faces stage IV cancer, our lives were derailed without warning. The initial shock gave way to a whirlwind of consultations, decisions, and preparations for major surgery.

The surgery was extensive, leaving my mother in the ICU for several weeks. I found myself thrust into what Gawande aptly describes as "a maze of medical services operating in silos". Hospital corridors became my second home as I navigated between specialists, deciphered medical jargon, and advocated for my mother's care. The ICU experience was particularly harrowing—watching her connected to machines, gasping for breath when they removed ventilation tubes, and celebrating small victories when she could breathe independently again.

"Being Mortal" touches on the role of caregivers, but perhaps doesn't fully capture the impossible balancing act it requires. As my mother progressed to a year of chemotherapy treatments, I found myself juggling multiple roles: medical researcher, emotional support system, physical caretaker, and still trying to maintain my own career and semblance of normalcy.

I'd wake early to review medical literature on her specific cancer type, trying to understand treatment options before meeting with her oncologist. I'd spend hours in treatment rooms, return home to work remotely late into the night, snatch a few hours of sleep, and repeat the cycle. The physical exhaustion was immense, but the emotional toll was even greater. I felt this tension daily—wanting to be fully present for my mother while drowning in anxiety about her future and mine.

Navigating Treatment Decisions

Gawande writes extensively about the importance of having meaningful conversations regarding goals of care. He suggests asking patients not just about their tolerance for treatment but about what makes life worth living for them. These conversations became central to our journey through chemotherapy.

After each scan, we faced decision points about continuing or modifying treatment. In these moments, Gawande's central question became paramount: When does medicine's push to extend life begin to harm the patient more than help?

I spent countless nights researching her specific cancer type, treatment options, and potential outcomes. But medical papers and statistics only tell part of the story. They don't capture what it means to watch someone you love suffer through side effects or lose the ability to engage in activities that once gave their life meaning.

The book turns to the decisions we make upon receiving a detrimental diagnosis—and how doctors handle giving the news and talking about steps forward. These conversations were often lacking in our experience. Like many caregivers, I found myself translating between the medical world's focus on disease progression and my mother's concern with quality of life.

What "Being Mortal" highlights brilliantly is how medical care often fails to address what truly matters to patients: "home, privacy and control, purpose, and everyday pleasures". During my mother's treatment, I became obsessed with preserving these values however possible.

When she was too weak from chemotherapy to maintain her independence, I arranged our home to maximize her autonomy. When treatment side effects made her favorite foods unpalatable, we experimented until finding alternatives that brought comfort. When pain limited her movement, we created new rituals that could bring meaning to her days.

Yet these efforts exacted a price. My own life narrowed considerably. Work deadlines were met from hospital waiting rooms. Friendships withered as social invitations were declined. My health suffered as self-care became an afterthought. The role of caregiver consumed my identity in ways I hadn't anticipated.

The Unseen Cost of Caregiving

Gawande writes about how patients with serious illnesses need champions and advocates to help navigate through the maze of healthcare services. What receives less attention is the cost to these champions. Caregivers often experience what researchers call "caregiver burden"—a combination of physical demands, emotional distress, financial strain, and social isolation.

In the midst of this burden, I found myself reflecting on a poignant quote from "Being Mortal": "In the end, people don't view their life as merely the average of all its moments... For human beings, life is meaningful because it's a story... And in stories, endings matter,". As a caregiver, I was not just managing my mother's medical care; I was helping her continue to write her life story with dignity and meaning.

Through Gawande's wisdom and my own difficult journey, I've learned several profound lessons:

First, medical decisions are deeply personal. While doctors can provide treatment options and statistics, they cannot determine what makes life meaningful for an individual patient. My mother's priorities shifted throughout her treatment journey, requiring constant reassessment and adjustment.

Second, caregivers need support too. The medical system rarely acknowledges the toll on family caregivers. Creating sustainable support systems—including respite care, support groups, and clear communication with healthcare providers—is essential for caregiver survival.

Third, hope and realism can coexist. Like the stories of stage 4 cancer patients who achieved remission shared in cancer support forums, we maintained hope while also preparing for difficult possibilities. This dual perspective allowed us to celebrate good days without denying reality.

Finding a Path Forward

A year after my mother completed chemotherapy, I find myself returning to "Being Mortal" with new insights. The book reminds us that "when it comes to the end of life, we have created a medical system with costs we did not actually choose". As a society, we need better approaches to serious illness that honor both medical science and human needs.

For those walking a similar caregiving path, I offer this wisdom: caring for a seriously ill loved one will demand more than you think you have to give, but it will also reveal strengths you never knew you possessed. Find small ways to maintain your own identity amid the all-consuming nature of caregiving. Accept help when offered. Create boundaries when possible.

"Being Mortal" is more than a book about medicine and mortality—it's a profound reflection on what gives our lives meaning, especially when facing serious illness. As one reviewer noted, this book teaches us something important about how to live with the time we have. Through my caregiving journey, I've learned this applies not just to the patient but to the caregiver as well.

The book's central message—that medical care should support not just survival but quality of life—became my north star during my mother's cancer treatment. While the balancing act of caregiving nearly broke me at times, it also taught me profound lessons about resilience, priorities, and the true meaning of care.

For anyone navigating the dual challenges of loving someone with serious illness while trying to maintain their own life, I highly recommend "Being Mortal." It won't make the journey easy, but it will help you ask the right questions and find meaning amidst the suffering.