Five years ago, I was just coming back to work after the death of my husband after endured 17 months of treatment and suffering from pancreatic cancer. The journey as his wife, caregiver, and number-one fan was the most life-altering and humbling experience I have been through. It was an existence where everything mattered (life, love, connection) and yet nothing mattered (mail, social media, formalities) at the same time.
I wrote this article attached here to highlight some of the takeaways I had from the experience. As I read it now, I’m transported back to the time when I was writing it. I had been searching for a way to create meaning from everything my husband had endured and to honor all of the generosity, grace, and goodwill that we benefitted from.
I still stand by everything in the article. The deep connections we made with providers, family, and friends around this higher purpose are a marvel of the universe that I feel privileged to have been a part of. And I remain deeply gratefuly to the incredible providers who cared for my husband. But the article doesn’t include the most profound and difficult misfires of treatment.
Despite my education, privilege, empowerment, and informed status as a healthcare insider seeking care at elite cancer treatment facilities, I was unable to protect my husband from avoidable suffering. We experienced it both personally and in witnessing the experiences of those around us. A few examples include:
Failed care: The ways in which hospice utterly failed us when their protocols for escalation didn’t precisely match my husband’s symptoms, leading them to ignore pleas for help until he was hours from death.
Medical error: The day when my husband experienced a cascade of five medical errors within 24 hours, none of which were likely reported, and which resulted in a dramatic late night surgery.
Avoidable suffering: The failure to address extreme pain, and then later to ignore all symptoms that weren’t precisely pain.
Administrative labyrinths: Learning to bypass weekend ‘don’t call us’ phone trees by randomly calling in-house phone numbers until we found someone at their desk who could transfer a call to an admin on the GI floor.
And so on.
During our many trips to the ER and hospital, I primarily donned my wife and caregiver hat, but I could never entirely take off my healthcare system hat. I kept thinking – if only someone were shadowing us through this day, and documenting each step of the journey, there is no way this madness could continue. The mass acceptance of the inanity is a collective venture, not born out of bad intentions, but endured by everyone along the way.
Guiding other family members through the healthcare system during the past five years has been discouraging; little seems to have improved. I can imagine that the friction these experiences create for patients is also wounding to the clinical and administrative professionals witnessing them. There are few bad actors, but a mostly broken system is enough to create harm. And it is a system that I am a part of.
As we sit on the precipice of dramatic change in healthcare, enabled by emerg ing technology and new business models, we must use this moment to ensure that we get it right. We need to make sure that healthcare is accessible and equitable, kind, and personalized. We need to honor the incredible compassion and skill offered by humans in the system, and also take an honest look at the pain the system itself can cause. We can do better.