How are YOU doing?

by Shalla Newton, MSN, RN, NE-BC and David Maher

Your providers are human: Burnout is REAL!

Still’s disease is hard for us as patients, but also for your providers treating you. We are patients with complex medical histories on any normal day requiring resource-intensive alliances with our care teams. However, we are not in normal times during a global pandemic, mounting emotional, physical and financial demands on our care teams. Often, the additional demands by employers and insurers create a breaking point of burnout and PTSD among our providers. Insurers become the prescriber dictating and marginalizing a provider’s cognitive navigation of treatment. Add in a pandemic and managing already complex patients in critical acuity, this is a perfect storm that many providers find difficult to row out of without proper support. 

We have discussed a lot of science behind Still’s disease. We wanted to take a step back and remind all of us as patients with complex diseases, our providers are human too. Despite shortages of PPE, pay reductions, being asked to perform life-saving procedures out of normal scope (vent management), or holding the hand of a dying COVID-19 patient, your providers are always there for you. Our healthcare and managed care systems make every attempt to turn providers into robots, but alas, your providers are in-fact human! 

Checking in on you

A pandemic elicits heightened anxiety and what feels like uncertainty in many aspects of our lives. As rare and chronic disease patients, we are rather used to isolation as a protective measure living with immunocompromisation. We acknowledge our heightened risks of exposure to COVID-19 having underlying comorbidities, such as respiratory, cardiovascular, and cytokine storms. We lean in closer as a community for support as well as to our lifelines in our specialty care teams. 

How are you doing? This is a common check-in point among the Still’s disease and any rare or chronic disease community. We know our disease courses are rather tumultuous especially in times of heightened stress.

David and I are both patients with Still’s disease, but I am also a nurse who has experienced burnout while caring for some of the most complex and vulnerable patient populations. I have held a 2 year-old as he passed in my arms from a rare brain tumor and watched others pass suddenly with every life-saving measure attempted. I have triaged medically fragile children in times of hurricane disasters, making ethically heart-wrenching decisions many providers are now facing daily in these COVID-19 war zones. These experiences remain etched in our minds and our hearts as your providers. We grieve with you and for you. I have lost friends on the front lines of this COVID-19 battle. I fear I will lose many more to the profession when they hang up their stethoscopes after this war is over due to severe burnout and PTSD.

‘I can’t turn my brain off’: PTSD and Burnout Threaten Medical Workers New York Times

You see two critical care nurses embracing in the NY Times article above about burnout and PTSD related to COVID-19 care. What I see is my friend, Bridget Ryan. Bridget and many of my frontline friends are risking their lives daily to provide care for the sickest of COVID-19 patients and support for their loved ones. The day this article came out, Bridget called me sobbing on the phone saying, “We didn’t have one win, Shalla, not one this week!” As I was supporting my friend on the phone, in true nursing (and Bridget) fashion, she asked me, “but, how are you doing?” 

Earlier in that day, my friend had held the hand of a dying patient with COVID-19, took a call of a nursing colleague emotionally distraught over the loss of another COVID-19 patient, had not eaten in days, or had a day off in over a week. However, she asked me how I was doing?

When was the last time any of us asked our providers this same question, how are YOU doing?

We may feel it is not our responsibility to ask our care team this question or deem it appropriate to inquire. However, it is completely appropriate even more so now as it feels like some of our humanity is wearing thin during this pandemic. Your providers often work through the day with little personal breaks for themselves. As a nurse, I can confirm it is not uncommon to find your colleague in the bathroom for 5 minutes, on the phone with a loved one and eating yesterday’s drug rep lunch or whatever she can scrounge up to eat. 

That same colleague then goes home, stripping both her clothes and day off in the garage or even outside the house to protect her family. Then, she showers in water generally too hot for human saturation to ensure she is decontaminated. During the pandemic, many providers have elected to take the additional step and isolate from their families to ensure they do not come in contact with COVID-19. They feel the personal and professional obligation to separate from their support systems, which builds up further emotional distress. 

Many of our healthcare heroes are saving lives daily and unable to come home to their families to decompress.

Burnout is empathy’s best friend 

Annual physician and nursing burnout is estimated between 50-70%. Reviewing any one of the many news articles on provider burnout and PTSD in the last few months, there is no doubt these rates are much higher during the current pandemic. We have heard of the heart-breaking suicide of the beloved ER physician in NY. Will there be more? Most certainly. 

Empathy is at the core of any therapeutic relationship. Whether it be during a time of crisis or during a longer battle with chronic illness. Your providers, albeit overly-exhausted and emotionally drained, will always find empathy at the root of their professional calling. As nurses and doctors, we rushed to NY during the epi-center of the COVID-19 crisis, leaving behind family and loved ones as well as our patients at home to help the most critical. However, this call to action also puts us at greater risk physically, emotionally and financially. 

Will I return to my family and friends? Will my patients be okay back home? When will I get COVID-19? Does this mask have holes in it? How long have I been wearing this gown? Will I have a job to come back to when I return?

These are all questions your providers anguish despite their decisions to help the most critical. These questions also lead to further burnout with too few mental health resources on hand.

Does burnout and PTSD affect my doctor?

Absolutely, definitely, yes! As Still’s disease patients, we rely on our rheumatologists.

Rheumatologists are generally tasked with treating some of the most complex, rare and chronic illnesses, like Still’s disease. In fact, Still’s disease is one of the most complex diseases to diagnose and manage. Rheumatologists are often required to see patients every 10-15 minutes on a normal day, not accounting for critical-ill patients during a pandemic. 

Burnout is rather high among complex specialty care, like rheumatology, before the pandemic, and it is not hard to see why. Employers and insurers require reimbursement structures like fee for service which incentivizes providers for seeing more patients (volume), and performing more expensive testing. Rheumatologists carry the heavy burden of being Dr. House’s all while being entrepreneurs and managing the infusion centers at their sites (which often lose money). They are also drained by navigating the never-ending story of procuring biologics and doing battle with your insurance company, completing a peer to peer to authorize your treatments. The peer on the other line of the insurer, may be a moon-lighting gynecologist taking shifts at a hospital, who just placed a COVID-19 patient on a vent. You think we are joking, but sadly we are not. 

Rheumatologists often play the role of gatekeepers as an internist, immunologist, dermatologist, cardiologist, pulmonologist, allergist and hematologist/oncologist due to the complexity or rare systemic diseases like Still’s disease. Our complex and fragmented healthcare system requires specialists like rheumatologists to become your PCP, the quarterback of your care team, and your insurance liaison. This excess clinical responsibility balanced with billing and employment pressures can lead to burnout and your rheumatologist to spook at the complexity of your diagnosis. Furthermore, balancing the fragility of empathy, compassion and dedication for their patients while feeling the noose tighten around their necks by employers, leads to severe mental health determinants within the healthcare profession. 

Will the COVID-19 pandemic expose further individual and systemic holes in our healthcare system, much like James Reason’s, Swiss Cheese Model? It already has! The patient community needs to realize provider burnout and mental fatigue increases patient safety events. Will healthcare providers receive further mental health and crisis support because of a pandemic? We do not know. The one resolute visceral response of the pandemic is, we need to do better for our healthcare heroes!

You might ask, what is the best way to thank your healthcare heroes? Ask them, how are YOU doing?

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