Elizabeth Edwards (1): Talking around death

What a trigger it always is when a public figure battles cancer, especially when the cancer wins. It hurts less and less each year (each month even, moving at a fast pace as I approach five years after my loss), I'm less and less called to shout out to their partners, to cry in the streets, to feel it in my own bones that there will be another small emptiness somewhere in the world soon.

But I still feel it, and I still want to respond as an authority — to laugh like a disrespectful teenager when a newscaster asks, as above (earlier today, before she passed): "What does that mean, to say that 'further treatment would be unproductive?'" It means they're dying, you simpleton. Did you know, anchorman, that people are meant to age, to lose hair, to wrinkle? But we need an explanation. It's not enough to say, "they are dying," or as I would tell my child, "their body is starting to slow down and doesn't work as well any more." It's got to be concrete, physical, specific, and not use any trigger words like "death" or "dying." That's not enough: nature's not enough. We have to explain, and understand, and take it one step at a time.

So Dr. Gupta talks about fluids building up and so forth.

Why is it not enough to say, as they have, "she's at home among family and friends"? That would be enough to make me totally jealous, of both John Edwards (as myself) and of her (in the role of Gavin).

I didn't know any better either, though I wasn't on the news, and my crazy hair had nothing to do with that. I remember the last hospitalization — the week he spent in the CICU before "we" were sent to an inpatient hospice. Here are some ways the ICU doctors and nurses tried to explain dying to me in their own concrete, observable, ways:

  • Yesterday afternoon he lost the ability to walk over to the toilet in his room [it was ten feet from the bed]. Sudden loss of strength is a sign that someone is dying. 
  • He's getting discouraged. 
  • From him: "Just get me out of here. Anything, just to leave here." 
  • His body has been fighting really hard for a long time. 
  • Actually, his heart function is higher — at 40%. This often happens as the other organs get worse, like a rallying. But the heart function doesn't change the picture at all. 
  • So, he's been through all the treatments that are customary for this cancer? 
  • Whole brain radiation is a brutal therapy. I don't think there would be any benefit to it in his case.
  • I'm not his doctor any more. On this ward, we only supervise cases for 24 hours unless there is a positive change. Unless you want to start an aggressive treatment?… which I think I said I didn't recommend, when I was on his case…? 
  • This is a bad ward to be in. More than two thirds of patients who are here die. You said you don't want him to die in the hospital… you have to get him out of this ward soon. 
  • These infections he's fighting off… they mean he has no immune system left. [It seems so vicious, counterintuitive, petty, impossible to be felled by a fungus or a yeast infection after two years living with giant tumors!]
  • More antibiotics wouldn't make a difference at this point. — His organs are shutting down. [I started to hear it]
  • His body is showing color changes that indicate the dying process has begun.  [I got it.]
It's a damn good thing they don't keep bricks lying around in ICU wards.

I understand the need for science-based medicine, for diagnoses based on observation. I know I wasn't listening at all. I don't fault anyone for anything they said. I loved the care Gavin got in that CICU, as bad as the staff (wonderful people!) kept trying to tell me it was for him. I am even trying to forgive myself and my ears for trying to protect me.

I have a dream that I am part of a culture where we can hear the words, "he's dying," and not disassociate. Where science is wonderful, but the words "he's at home, among family and friends" send a clear undeniable message to us all. When I will be changed too, as part of this change; and I will be able to live and die in this brave and humble world.

But the newsmen still annoy the hell out of me. Just a little.


Anonymous said...

Reminds me somewhat of when the paramedics came to pick up Elias the night he died. . . . looking back on it now, there were 'countless' things said and actions taken that I either ignored or just flew over my head at the time. (of course, it was not the 'typical' brain tumour death either)

Even when the er doctor told me he had bleeding in his brain and 'it doesn't look good' - little brain tumour expert me still figured they could do surgery to relive the blood - I had read about that being done numerous times . . . . right???


annie said...

Until I got Will into hospice, I was the one who had to say "dying" "death" "terminal". Doctors evaded and wouldn't commit.

Slippery language surrounds everything that is hard, unpleasant or not in keeping with hope, faith and love in America. We think this pink cloud with fluffy angels we imagine our worlds to be will keep us safe from everything and we dissemble when it does not.

I knew the minute I read the news update that she didn't have weeks b/c people in the U.S. typically don't make it to hospice (inpatient or at home) until it's days or even hours left - that's how much we try to pretend that death isn't going to happen. We close our eyes until we've robbed ourselves of what could have been a peaceful end surrounded by family and friends and let it be a frenzied panic that swamps us instead.

Supa Dupa Fresh said...

C, you've just reminded me how crazy I was to ask if there was a surgery to remove all the lymph nodes. Cah-ray-zy.
Ann, Yes, that's the point: we had only 4 days in hospice, she had less than 1 (if news timing is anything like real life). My main regret was that he didn't start "dying" sooner.

Love to you both.

Widow in the Middle said...

Excellent, excellent post topic and comments! We all need to hear this. I remember "knowing" my husband was near death even though none of the medical staff said anything to that extent. Until the day before he died they were "still hopeful." It was crazy and I felt like I was going crazy. One night I thought my husband wasn't going to make it and I didn't go into work and went to the hospital instead. My boss chewed me out right and left. Imagine trying to explain that you know your husband is dying, even through the hospital isn't telling you that. The next morning a nurse finally admitted that they hadn't thought my husband was going to make it through the night. I was shocked that no one had told me this! If I hadn't relied on my gut, he might have died and I wouldn't have been there. He fell into a final coma a few weeks later but the docs were still rallying for his recovery - throughout the two weeks of being in a coma. By the time his lead doctor finally told me he was actually dying and there was no hope, he died less than 24 hours later.

I wish there had been less heroics and more honesty from the hospital from the get go. It was almost as though they believed they had to do everything they could to try and save my husband, but in my heart I knew that with his cancer diagnosis he wouldn't be saved.

Supa Dupa Fresh said...

WITM, A lot of folks have said this to me: it's the doctors. I mean, it's pointless to blame a single group, but how frustrating for you to "know" and for their own feelings about it to lead what happened to your husband.

Hugs to you and your boys! I have missed you.


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