People throughout the entire
world are struggling through and, for the lucky ones, enduring strange, strange
times right now. Many pieces have been written detailing various facets of
pandemic life from the confines of stay-at-home orders or a true quarantine,
and I vacillate between devouring them and feeling impatient with the sameness
of the content. Yet, there is a small subset of essays that I always find riveting
and resonant – those penned by cancer and other long-term patients, caregivers,
the disabled, and the bereaved.
For those who are already sick,
the novel coronavirus poses a sinister risk that those of us who are healthy and
abled do not face in that same way. Dealing with the reality of the pandemic is
more than just an inconvenience to the patient, it goes far beyond the
disappointment of not seeing friends, it is greater than missing the personal fulfillment
of working in-person with colleagues, and it is not just the annoyance of
waiting in line to get into a grocery store with a reduced capacity. For those
with a chronic condition or terminal diagnosis, the world is now filled with
invisible threats that further endanger already tenuous personal survival.
For fear of speaking out of turn,
I should say that I write from the perspective that I can only imagine how it
must feel to be a patient or caregiver right now. Still, I mean that in the
purest sense of the phrase because I can imagine all too well and in great
detail. What does the glioblastoma patient or spouse feel like when reading
about rationed care in the ICU? Would the beloved patient receive ventilation
if needed due to covid-19 or would he be cast off as already unlucky, previously
destined for an untimely death? Would the otherwise remaining few months of
life or handful of years for that patient be dismissed as less worthy of
preserving than a “healthy” person of the same age? The reports in the news are
not encouraging for patients and their families…
I never knew how it was to
actually be the person confronting her mortality in a “this is going to really
happen, and soon” kind of way. I don’t fault myself, though, because I
do not think that it is humanly possible to seriously grapple with one’s death until
faced with a realistic threat. Still, the thought of coronavirus necessitating
ventilators and, particularly, rationed care is horrifying to contemplate as
someone who loved a person facing down death. Quite honestly, it elicits memories
that are truly traumatic.
As his tumor progressed and he experienced
symptoms and deficits at a shocking rate, Chris was Chris, loving, warm, and wise.
We tried to avoid unnecessary trips to the hospital and, especially, we expressly
attempted to avoid 911 calls and ER trips. Our thinking was that we didn’t want
to spend more of his precious time than absolutely needed in the hospital
setting, particularly not in an emergency setting that would be upsetting for
our children. Our preparation and contingency plans failed, though. Chris
experienced successive general seizures that would not yield to “rescue”
medication and I had no choice but to call 911. Once he left with the paramedics,
I naively assumed that the crisis of the hour had passed. Oh, I was wrong…
As I pulled into the parking lot
of the hospital, I received a call from an unlisted number. It was the ER
doctor hurriedly asking about permission to intubate Chris because he was “having
a hard time breathing.” My shocked brain could not catch up with the words of
the doctor. I had done a fair amount of reading about brain cancer and the
typical trajectory toward death, and unstoppable seizures resulting in
respiratory distress hadn’t topped the list of probable death scenes. I frankly had
not considered that this would be the way it ended for Chris when he left in
the ambulance.
Words simply fail to communicate
the terror of having to make a life-or-death decision for someone you love. At
that moment, I tried to stay calm, but panic was pounding at my chest walls. I thought
back to the many discussions Chris and I had engaged in; he had not wanted to
die being supported on machines. But, it seemed like this was a situation that
was indirectly tied to the tumor; his breathing problems were from too much
medication to stop the seizures. Could his respiration recover if the
medication wore off? Could the seizures be controlled with different medication?
I tried to ask if the doctor thought Chris would ever come off the ventilator
if he was intubated, but there was no way to know and no time to talk with me
further. I had to make a choice right then.
In the worst moment of my life, I
made the choice that still feels monstrous:
I told the doctor not to
intubate Chris.
The horror of that moment was
extended as I was met at the ER door by staff who hurriedly ushered me into the
bay where Chris lay. I valiantly tried to assess whether the Chris I knew was “there”
or not in his postictal state, the worst I had ever seen him in, all the while
being challenged by the physicians in the ER – had we discussed the withholding
of life-saving interventions in front of a doctor? No, we had not, because the
neuro-oncologist (based at this same hospital) had never addressed this with us,
a patient and caregiver dealing with a diagnosis of 2-3 months to live… But, we
had discussed it in front of lawyers and signed documents with advanced medical
directives. When I stated that fact, everyone backed off.
This particular situation had a “good”
outcome. Instead of intubation and a ventilator, oxygen was administered to
Chris via mask, then cannula, and it helped. It was enough breathing support for him to get
through the crisis and up to the neurological intensive care unit for a few
days to assess the situation. His respiration did indeed return to normal and seizure
medications were adjusted, thus allowing Chris to come home and spend six precious
weeks with family and friends before the tumor completed its devastating course.
The intubation/ventilator
decision was incredibly intense and still haunts me. What if Chris had
needed extra support from a breathing machine to overcome the effects of the
medicine but I had denied him that chance? Then he would not have had those six
weeks and it would have been squarely on my shoulders. Or, what if I had made
the other choice and he had been intubated but never able to come off the ventilator,
meeting his end exactly how he had not wanted? That, too, would have been my
fault.
I’m still not sure I made the
right call, but rather we got “lucky” in a very unlucky situation. While no
time would ever have felt like enough, the six weeks following Chris’s
emergency room trip and neuro-ICU stay readied everyone. Though difficult, it
was cherished. It was important for his children to be able to spend time with
him outside of a traumatic hospital setting. It was important to me to be able
to say the things I needed to say – thank you, I love you, you are incredible, you
can go. Most of all, it was important to Chris – he was able to say goodbyes on
his own terms and in his own way.
I don’t know how to wrap up or
make a perfect connection to the pandemic. Still, this time and the disturbing
news about medical equipment shortages have been weighing on me from the
perspective of that ER experience with intubation and ventilation (as well as
with other facets of my loss, which I hope to write about soon).
I wish I could prevent everyone from
facing the decision to intubate someone they love. I do not envy the medical
professionals who must make such decisions, either. But still, I am glad that
ventilators CAN help some people breathe through situations that might be
overcome with temporary breathing support. Most of all, I wish to express my
heartfelt hope that patients already facing terminal illnesses do not become
infected with the coronavirus. Everyone deserves the chance to live out her
life with dignity and love, and the path of the terminally ill is already
difficult enough, the future uncertain enough, and time short enough as it is.
Now that all of that has been said,
what can I do? I’m a mostly healthy, privileged person in a pandemic, “just” scarred
for life by having to decide about my now-deceased husband going on a ventilator.
Well, there’s nothing left to do for Chris, but I can stay home. It seems like
such an ordinary, inconsequential thing. And, for the record, it stinks. It
really, really is not fun. I am irritated by it and stir crazy like anyone else,
and I want it to be over right now. But, I’m doing my part and it is the only
thing I can do. I’ll never know if staying home helps someone else avoid getting covid-19
on top of an already horrible situation, but I’m willing to do it because I know
just how precious time is when someone is dying and exactly how wrenching it is
to lose someone you love.
This world is full of untold,
unheard, unimaginable pain. Mine is but one grain of sand in a desert of
suffering.
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