Tag Archives: triage

So these are some realities…

Posted on April 4, 2020 | 6 comments

I was at the Termeer Center at MGH for twelve hours on Thursday. First in, last to go.

And, just as two weeks ago—the previous time I was at the hospital—there was an awful lot of coughing going on, and this time it was clear the source was a staff member.

Fortunately everyone is wearing masks now but this individual was perhaps ten feet from me and we all use the same restroom as well. When shifts changed and they departed I walked out to the desk and had a discussion with the remaining two nurses as to how potentially upsetting this was. I asked if when a staff member is coughing if they are automatically test for COVID-19. The answer is no–staff fills out an assessment form in the morning that basically asks if there has been a change in symptoms. And this particular individual has had a chronic cough for seven years, of unknown etiology. The nurse said they don’t even hear it any more, which I suppose it not so different from the people who work at Starbucks who stop smelling the coffee.

However I explained that this was scant assurance for those of us on the ward, all metastatic cancer patients. And that I was unusually capable of advocating for myself but that others might not be. A center for targeted therapies/phase I clinical trials might not be the best place for an employee with a chronic cough.

I told them that I was totally self isolating, even to the point of driving myself to the hospital for infusion. And that MGH was the riskiest place I was required to go to in a world where I was likely to be denied a ventilator should I acquire coronvirus. That defense was my only chance.

They were both very sympathetic and expressed desire that they be tested on a regular basis (I mean, duh?). And then one of the nurses told me that when she gets home she strips down at her doorway and runs right to the shower, a scenario I repeated that evening.

As I paid for my parking I became aware that given the fact that there are less cancer patients at the Yawkey Center now, the garage is being used for those employees in the COVID-19 unit. I stood in line right behind a nurse who was just getting off shift. So yet another risk factor for exposure.

My youngest son called me that evening and I asked if he was doing a good job of social distancing, so that in the near future we might actually be able to see each other.

‘I haven’t been truthful with you,’ he responded. I braced myself for anything but what he shared was that an irresponsible roommate had brought someone to their apartment who was positive for COVID-19. And that several days later my son and another roommate had come down with all of the symptoms, including loss of taste and smell. And yet the health center at his university (MIT) had declined to test them.

My son was really sick for two weeks but has fortunately recovered. When I asked him why he hadn’t told me he allowed that he was protecting me, as I had indicated that even if he got sick, I would come. ‘And I know you would.’ he said.

I am glad he is ok. I am also angry with our country that more tests are not available and I share this so that you understand that any of the numbers we see as far as positive cases are simply not accurate. Far too many people are presenting with symptoms and if they are not desperately ill, famous or well connected, they are not being tested. This is falsely reassuring and poor science.

We must all be vigilant.

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I shall not step aside quietly

Posted on April 2, 2020 | 8 comments

Remember the concept of noblesse oblige? That those in a place of privileged circumstance have a moral obligation to help others who are less fortunate?

That concept is being turned on its head, like everything else in the world right now.

I have been at the hospital since early this morning. Labs, EKG’s, infusion of saline and now drug. Long, long, weird day and it won’t end until evening.

This morning my nurse asked if I had driven myself from Amesbury to Boston. Yes, I replied. Two different friends had offered to help–one dropping me off, another picking me up and taking me home. But aside from the great inconvenience for them, I decided that I was likely safer driving in alone. I mean, social isolation is social isolation to the greatest degree possible and at this time, the only people I am spending any time with are those who are absolutely necessary–my oncology team.

Anyway, I explained to my nurse that given the fact that I would likely be denied a ventilator should I be unlucky enough to contract COVID-19, my best chance of survival was defense. I cannot get sick.

She replied with an anecdote illustrating that not everyone with COVID-19 wants to go the ventilator route, a reference to an older architect in a neighboring community. “How old?” I asked. 83. Old enough to be my father. And when I asked if he had survived she said no, ‘That’s why the paper did a story about him.”

Oh yes, I said. They like to suggest that it is a noble thing for those of us who are older or with a preexisting condition to step aside. And then, “Fuck that shit.”

“I haven’t been fighting like hell for fifteen years to stop trying now. I deserve a continuing chance at survival just like everyone else. Ask my friends. Ask my family.”

I imagine she was somewhat taken aback. But It is not on the cancer patient to demonstrate noblesse oblige. We are the vulnerable, not the privileged.

Obviously diplomacy isn’t my strong suit.

After she left the room I pulled the once warm blankets over my head and fantasized that in the sequel to Mad Max: Fury Road I would be cast as Charlize Theron’s long lost mom.

That’s a role I’m better suited to.

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Analagous

Posted on March 23, 2020 | 2 comments

Once upon a time I had a roommate who had a very high IQ (physics major at Yale) and equally low EQ. He had invited me to share a meal with him and once it was prepared, he set out a single plate and then sat down to eat. ‘What’s going on?’ I asked. ‘Oh,’ he said. ‘It turns out there was only enough for one.’

I will never forget it.

Today’s NYT had a powerful opinion piece on disabilities and coronavirus—the whole sacrificed for the greater good concept that I have been railing against.

The meal analogy is useful here. If you organized a dinner party only to discover that there was enough food for five and you had invited eight, would you tell three of the guests that they must go hungry? And would you base that decision not on whom was most in need of a meal, but rather on who was not. Malnourished, adios, well fed, you stay.

It’s an impossible scenario with so many more humane and logical outcomes. You could make smaller portions, so everyone got less but some. Or you could simply make more food, so no one went without.

That is what needs to happen here, in America. Rather than having conversations about difficult choices should we (rather, when we) run out of ICU beds and ventilators, let’s ramp up production.

To do otherwise is going to create a situation that is impossible to recover from. Obviously for those who are consigned to certain death, but also for those making hard choices.

Choices that are difficult to live with.

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How bias takes hold

Posted on March 22, 2020 | 2 comments

One word at a time.

Calling COVID-19 China Flu? That’s a potent example.

Language matters. Here in Massachusetts, there are now two fatalities from coronavirus. In both cases, their advanced age as well as the fact that they had underlying conditions was reported.

This is the sort of thing that reassures the young and healthy. But for those of us who can’t fall back on the innocence of youth or robust health? It is increasingly unsettling. And not so very different from the ‘did you smoke’ question that those of us with lung cancer are so often asked.

Bias. About to be put to practice in extremis, as it becomes necessary to make hard choices as to who gets an ICU bed and a ventilator.

Sharing the age and comorbidity status of victims of coronavirus only underscores the growing argument that certain lives are less worth saving than others, an ugly notion any way you spin it.

As someone who is an old hand at surviving incredibly poor odds, I pay scant attention to statistics. And I warrant that if I become ill with coronavirus and am provided supportive medical care, I may survive this as well.

Hopefully I will never have to find out.

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Am I ok with this?

Posted on March 21, 2020 | 7 comments

No.

I learned a long time ago that no one was going to be a more formidable advocate for me than me. Simply because–plainly stated–my life matters more to me than it does to anyone else.

No apologies. Self survival is a primal instinct.

However, I never thought I would get to a place where this was actually called into question.

Now, however, with the coronavirus ravaging the planet, I am forced to argue for my right to live.

Yes. Obviously much of this is out of our individual control but I would like to think I at least have a fighting chance.

That I, an individual who has beaten the odds for fifteen years now, should be given a shot at continuing survival.

It is incredibly demoralizing to understand that should I be unfortunate enough to contract coronavirus (despite my every effort to isolate) I might be denied supportive treatment. Based simply on my age and comorbidity (stage IV lung cancer).

It bites to know that those young people who were cavalier enough (selfish?) to crowd the beaches of Florida during spring break would be an instant priority. That I, who have fought like hell to stay alive for one and a half decades now, would be considered a non–priority.

Seriously? How is this going to serve society in the long term? I thought death panels were a thing of rumor, not reality?

My best hope of survival is to make certain I do not contract COVID-19. However, I understand better than most that this is not something I can control. Shit happens.

However, should that particular shit happen to me, I will not go quietly. I do not approve of a system or society that bases triage on chances of survival. Honestly, first come, first serve is fairer, in so much as it does not have inherent bias. That bias is bad for all as it is potentially nonrecoverable. I would argue that as bad as it is for me, it is also something that is going to be difficult to reconcile for those who have to make the call.

Don’t give up on us. Just don’t.

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This isn’t normal

Posted on March 20, 2020 | 6 comments

But it’s the new normal–for the foreseeable future.

I drove to Boston yesterday for IV fluids. Before leaving the parking garage I put on both an N95 mask and latex gloves. When I got to the lobby a security guard directed me to the front desk where I was asked to check in; essentially confirming that I had an appointment. No visitors are allowed so those who accompanied patients were asked to wait downstairs.

When the elevator got to the seventh floor, I was met by a trio of nurses in full protective gear. They asked me questions (have you travelled to Italy, Iran or China…) and then took my temperature. Then I was allowed to proceed to the Termeer Center.

Once there I took off my mask and gloves. Shortly after being led to my room, the patient across the hall started coughing. Eventually a nurse came and I heard him ask her if this was a new thing (coughing) and then told her she’d have to wear a mask.

Sigh. I brought it up with my nurse who acted as if I had inappropriately mentioned a stain on the floor. I said it was getting harder to be a cancer patient and she responded that it was becoming more difficult to provide medical care.

Well yes, but being a care provider is a career choice, whereas being a cancer patient is just shitty luck. And, should she come down with coronavirus, they would still treat her.

Hate to be the bearer of bad news, but my predictions per triage are likely going to come true. I was interviewed for this article by Liz Szabo of Kaiser Health News pertaining to the shortages of ICU beds and ventilators and how it might impact my community. More disturbing yet is the story in today’s NYT about the discussion as to prioritizing care held by hospital representatives in Washington State.


“They look at the criteria — in this case it would likely be age and underlying disease conditions — and then determine that this person, though this person has a chance of survival with a ventilator, does not get one,” Ms. Sauer said.

“This is a shift to caring for the population, where you look at the whole population of people who need care and make a determination about who is most likely to survive, and you provide care to them,” she said. “Those that have a less good chance of survival — but still have a chance — you do not provide care to them, which guarantees their death.”

As I stated in the earlier article, “Those of us with lung cancer are among the most vulnerable,” Olsen (sic) said, “but instead of being viewed as someone to be protected, we will be viewed as expendable.”

It is an incredibly frightening and uncomfortable position to be in. Knowing that when the time comes, those of us with underlying illnesses will be sacrificed for the greater good. Not by choice, but rather by consensus/mandate.

In the meantime, my best chance for survival is to avoid exposure. Because if I do get coronavirus, I am likely screwed.

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