My first post, Part I, was all about my admission to the hospital after I’d been tested for COVID-19 and how weird it was. Medical treatment during a pandemic is not fun at all. Impersonal medical facilities are even more so when everyone you encounter is scared of catching something from you, the patient. Plus, the lack of family members means that vulnerable patients are left alone, without advocates.
Just to be clear, I’m not suggesting that any of the amazing people working in the medical profession don’t care or don’t want to help, it’s just that they have so much on their plate already. For those of us who are stage IV, we have to access the health care system whether we really want to or not, so I notice different things.
One thing that jumped out at me from the beginning of my hospital experience is that no one that I dealt with had matching equipment/scrubs/etc. Each person was wearing a hodgepodge of personal protection equipment (PPE). One doctor had a makeshift shield over his mask that didn’t fit and kept sliding down to smoosh his nose. It’s a little difficult to maintain a respectful facial expression and tone when someone looks completely ridiculous.
One of the surgeons at my cancer center wrote an article about how oncology practices are affected by this pandemic. You can access the article here. She discusses the important question: “What does the Hippocratic oath mean during a pandemic?” This is a question that I think our entire country is grappling with and I haven’t heard any good answers that we patients can rely upon.
The New England Journal of Medicine published guidelines to be used when supplies become scare and must be rationed. The guidelines are meant to alleviate the burden of having to make such difficult decisions that result in life or death. I can’t imagine the burden that a medical professional who has sworn to do no harm will carry when so many are dying.
So what does all of this mean for me and my colleague who have MBC?
First of all, I’ve seen some recommendations from oncologists on Twitter not to reveal that those of us with stage IV are terminal. The thought process is that we patients should not volunteer such information when it would be used to categorize us to the wrong category, that of people too sick to be saved. I’m not sure what I think about this suggestion. The hospital where I seek out treatment is part of the network that includes my cancer center. I can’t escape the reality that my diagnosis is indeed terminal.
Secondly, watching how the people who were the sickest had the most difficult time communicating their wishes has me super concerned. Without family members close by, how do we communicate our wishes if we’re too sick to talk. I don’t have all the answers, but I do have a potential solution.
Road iDs have been developed for bikers and hikers who often find themselves in unfamiliar settings.
This metal piece will fit around the band of my Apple Watch. It has some demographic info and my emergency contacts on the front. On the back are codes that lead an emergency room worker or paramedic to go to a website where I can upload documents like my advance directives. This same tool comes as a bracelet or an anklet. Such a simple yet profound options to ensure that there is a chance my wishes would be followed if I can’t communicate.
I did test negative for COVID-19 and I’m thankful that I don’t have to deal with the symptoms at this point. My heart goes out to the families who have lost loved ones, to the health care workers on the front lines and all of us social distancing. This is a difficult time and life will likely look very very different on the other side of all this.