This extraordinary piece we share with you today is a thoughtful and moving example of just what it takes to get well-meaning medical providers to pay attention to what we (the patients) want, not what they think we need. The story is a hard but valuable lesson about the importance of both knowing and communicating your end of life wishes. It is told with grace, strength, clarity and love.
Originally published March 12, 2019 and reprinted with permission
“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”
My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.
In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”
“That is not what I want,” said my husband, looking her in the eye.
“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”
So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.
“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.
“Do not call 911,” I said.
“We understand,” they said. “We love him too. But we have to call 911.”
The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.
“You may not take him out of this apartment,” said I.
It became an interesting battle.
“We understand,” they said. “We agree with you, ma’am. But we have protocols.”
Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”
One of the paramedics saluted my husband as he left the bedroom.
My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.
Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.
What’s wrong with this picture? Only the caption.
The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.
Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.
Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.
Fran Moreland Johns, an accomplished and prolific writer, is the author of Dying Unafraid (Synergistic Press), a nonfiction book telling of people who did just that. Inspired by her personal experiences, Dying Unafraid led to other published work on end-of-life issues and activism in that field that included serving on the board of Compassion & Choices of Northern California and the San Francisco Bay Area Network for End of Life Care. She has recently signed on as a volunteer with End of Life Choices California, and is currently helping to publicize our services throughout Northern California.
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This was so well done; it made me cry. What a lucky guy to have such a strong woman looking out for him, defending him and hugging him “into the hereafter.”
Waaay to go, Fran!
Very good and enlightening story. What a strong wife this husband had and thank goodness they ended up at home and letting his final days, hours and minutes be with his loving wife by his side. Many wouldn’t even try this, and I’m sure she was emotional in her own ways, but dying with your loved ones warm hug sure sounds better than in a colder hospital room and being treated as a number.
My biggest fear is that someone will call 911 (I sure wouldn’t) even though we have all the paper work too. When I told my Kaiser doctor my end of life wishes and gave her copies of my paper work her response was, ” do you really want to do this”, I was 68 at the time. I said,”after being a care giver for my husband with Alzheimer’s for too many years to count my feelings about my own death has changed. I just wish there were more options for my husband because the death with dignity bill in Colorado won’t help him. He doen’t want to die in a hospital either and I will make sure that it doesn’t happen.