The Human Cost of a Broken System
I recently finished Atul Gawande’s book Being Mortal: Medicine and What Matters in the End, which explores the complexities of aging, mortality, and end-of-life care. I’ve read it before, but it hit me differently this time because of where I am in life: a key caregiver to my dad with end-stage Parkinson’s Disease.
Gawande explores the shortcomings of modern medicine in addressing the needs and desires of the elderly and terminally ill. “Being Mortal” encourages readers to confront their own mortality and consider what truly matters in the end. It advocates for a more compassionate, coordinated, person-centered approach to healthcare that values the dignity and humanity of every individual.
My dad is 84. For my entire life, he was the person I turned to when I needed something fixed. He was the guy whether it was a car engine, a piece of jewelry, a leaky faucet, or walls that needed to be patched and painted. I grew up thinking that every dad was as handy as my dad. He was born with four fingers on his left hand but was as nimble and capable as they come. He wasn’t quick but curious and meticulous until he wasn’t.
An Unexpected Diagnosis
In the summer of 2021, my dad was diagnosed with Parkinson’s Disease. In hindsight, we should not have been surprised. The man who used to work the foredeck on his sailboat for decades no longer had the same dexterity or balance. He got in a car accident when he couldn’t react quickly enough and hit a light pole. He shuffled when he walked. Preparing meals became such a burden for him that he only ate one meal a day. He had always been fastidious about eating in the past, so when he claimed he wasn’t hungry, we just chalked his reduced food intake up to that.
Dad became depressed following the diagnosis and ignored the symptoms and his limitations until they became so problematic that he could no longer live on his own. Having read Gawande’s book and knowing how important it is for people to have a say in their care, we waited a long time before having the difficult conversation about moving him out of his home.
In January of this year, we relocated my dad to an assisted living facility. He weighed 103 pounds, and we no longer trusted that he could manage meal preparation, basic hygiene, medication dosing, or laundry, despite his having in-home healthcare, a meal delivery service, a cleaning service, and five adult children helping with groceries, bill paying, and medical appointments.
The final straw was when my brother stopped by unannounced, and my dad was on the kitchen floor, trying to salvage a blueberry pancake he dropped several hours before. He couldn’t get up. He was just two years into his diagnosis. It breaks my heart to think of how hard life must’ve been, yet he wanted to maintain his independence at any cost.
A Fragmented Ecosystem Impacts Care
In Minnesota, we have access to excellent health care. My dad has a primary care physician, a first-rate neurologist, a dermatologist, an ophthalmologist, a physical therapist, an occupational therapist, a speech therapist, several nurses, pharmacists, and a dozen aides. He has Medicare and a generous supplemental policy. Yet throughout this health journey, there has been no coordination of care, and no one ever advised us of resources for our family to access.
We experienced the broken ecosystem firsthand; not one payer or provider ever acknowledged his struggle or attempted to connect the dots. Despite having access to care and five engaged adult children, my dad probably missed out on available treatments, therapies, and support resources that could have helped alleviate his symptoms and improve his overall well-being.
In hindsight I wish we knew more about geriatric doctors. I think that could’ve been a game changer in managing the range of symptoms that can impact health and well-being, including mobility, cognition, and emotional health.
A geriatric doctor could have provided a personalized treatment plan tailored to my dad’s unique needs, coordinated care with other healthcare professionals, and offered support for managing his symptoms and improving his quality of life. Geriatricians are well-equipped to consider the broader implications of treatment decisions, such as medication interactions and potential risks, in the context of an older adult’s overall health and life circumstances. Not one health provider ever referred us to a geriatrician or even brought up the concept. We felt utterly alone when it came to doing what was right and knowing when to do it.
My dad’s Parkinson’s Disease is advanced. His cognitive abilities are faltering, and words now come as slowly as his ability to walk. He’s losing his ability to swallow. He whispers when he talks and can no longer project his voice. The caregivers don’t mean to, but they ignore him a lot because his voice is so quiet. They also raise their voices even though his hearing is perfectly fine. He is confused, overwhelmed, and afraid he won’t wake up tomorrow.
The Family Burden is Profound
Watching my dad deteriorate for the last few years has been painful. It has impacted our family dynamics and my relationship with my siblings and tested our commitment and resolve. Like Gawande, I believe all humans deserve to live and die with dignity. But long before the end-of-life stage, not enough people talk about the fragmented ecosystem, the lack of coordinated care, and the heavy burden placed on families because of it.
The U.S. has the most advanced medical technologies and highly skilled professionals in the world. Yet, this broken system leaves us as caregivers sad and frustrated, and we are left to bear witness to what could be different. Can’t we do better?
