Patient Centered Care

Where Did My Doctor Go?

Where Did My Doctor Go?

When I was a little girl, I was fortunate – what I have now come to understand as privileged – to have access to doctors of different kinds for whatever I needed. It was easy to get in to my primary physician, whether for an annual physical or when something came up, like a throat infection or a mystery allergic reaction. Maybe because my maternal grandfather was a pharmacist, I inherited a high level of trust and respect for medical practitioners of all types. This regard continued throughout my adult years; however, as life unfolded and I entered the world of software consulting, changing providers became routine due to frequent job transitions.

When selecting a set of new in-network providers, it became my habit to conduct an interview process. Taking charge of my health, I developed a habit of conversing with potential providers, ensuring they were comfortable with alternative treatments like acupuncture and chiropractic care (early on, those treatments were rarely covered by insurance). My self-advocacy and collaboration with doctors proved effective for most of my life, but over the last 10-20 years I began to notice that I did not always see the same provider each time I went to the doctor’s office, which thwarted the ongoing partnership that I wanted. In addition, it began to feel less and less like the doctor managed the practice; on more than one occasion I had the appointment scheduler try to tell me what my provider did and did not treat, typically giving me different information than was later shared by my physician.

More recently, it is often difficult to get an appointment with my provider when I am ill. In some cases, we can do a teleconference call, but most of the time a physical exam is needed for diagnosis and treatment – and, depending on staffing, it might be challenging to get in the same day. So instead, if I have acute symptoms, I am likely to opt for urgent care or, in more severe cases, the emergency room. There, I must count on the on-duty provider I see to listen to me and review any notes in whatever electronic medical record is accessible. Add to all this that I have seen more providers retiring, changing the type of practice they do, or having turnover for one reason or another. This means that I have lost the ongoing relationship with a regular provider. My success at self-advocacy depends on the goodwill/energy/focus of whoever I’m seeing at the moment.

With the gradual changes in the healthcare industry, it seems like a gargantuan issue to solve. The focus of the US healthcare industry has often revolved around diagnoses, treatments, and outcomes on a case-by-case basis. It is tempting to want to return to a time when healthcare operated more in a way that suited me. However, I know that’s not the answer; we need to be looking forward. As the system is increasingly embracing whole-person care, value-based care, and with more focus on consumer-centricity, I am encouraged to believe that we are on the march to addressing these issues. However, many in the system with a better personal solution may not realize the gaps being faced by many of us who are still trying to coordinate our own care. My hope is that as we embrace new technology and new business models, the type of relationship-based, accessible, and equitable coordinated care that most of us crave becomes a reality for all.

Coming Back 5 Years Later

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.