Thread by @LizSzabo

I don't want to criticize nurses, b/c they work incredibly hard. But when my dad was hospitalized, it wasn't helpful for them to tell me every day that he was "looking better today." He was elderly, w/ dementia & other comorbidities. He was never going to get better. 1/

His nursing home sent him to the hospital, where he was in the ICU on bipap. (He was DNR and we said no ventilators.) After a few days, his breathing improved, he switched to a nasal cannula for oxygen. That doesn't mean he was 'better." 2/ #hpm

Do nurses feel pressure to keep families' hopes up?I've written about hospice & the end of life for years, but that sort of false hope could keep other families from accepting reality. #hpm /3

When a new doctor came in for her rotation, she was more honest. She mentioned choices of feeding tube, since he couldn't swallow, or hospice. Why do docs still recommend feeding tubes for elderly ppl w/ dementia?#hpm 4/

As a health journalist, I knew that feeding tubes can do more harm than good in elderly ppl with dementia. They don't extend life. If ppl are aspirating with regular eating, they are likely to aspirate w/ feeding tube. choosingwisely.org/patient-resour… #hpm 5/

This site has a whole list of problems that can result from using feeding tubes in elderly patients with dementia. It may sound morbid when you're young/healthy, but it's good for everyone to have basic knowledge of hospice, end-of-life choices. #hpm 6/ choosingwisely.org/patient-resour…

#hpm The best advice we received was after we requested a meeting w/ hospice team. Doc was unavailable b/c she covers multiple hospitals, but social worker and chaplain were terrific and very medically knowledgeable. 7/

When thinking about what was best for my dad, I thought about my interview w/ @GretchenSchwa10 for this story.
#hpm 8/ khn.org/news/never-too…

In talking to hospice team w/ Mom, they asked her what she was hoping for. Mom asked incredibly smart, succinct questions. She said ideal would be for dad to go back to the way he was. Chaplain explained how ppl w/ dementia tend to go downhill w. each event like this.

#hpm 9/

Chaplain said you or I might "bounce back" after a hospitalization. But ppl w. dementia sort of bounce lower each time, never getting back to baseline. #hpm 10/

We went through options with hospice team. Could dad go from hospital to rehab? Chaplain said that's unlikely to help, since you need to be able to learn new things in rehab.#hpm 11/

I thought of this terrific paper, which frames choices as the "best-case" scenario, worst-case scenario and most likely case. Sometimes, even the best-case scenario is unacceptable. #hpm 12/ jamanetwork.com/journals/jamas…

After talking to hospice, I articulated our choices. Going back to assisted living was not possible. Rehab not possible. Should he stay in hospital as is? Transfer to nursing home w/ basic care, bouncing back to hospital as needed? Or transfer to nursing w/ hospice? #hpm 13/

Before the hospice meeting, my mom started to say, 'I think Dad was giving us a message when he pulled out all his tubes." I cut her off, saying dad has brain disease and can't make good decisions. (I was wrong.) #hpm 14/

During hospice meeting, Mom got to speak her mind. Said maybe Dad was sending signal he was done, that he wanted no more tubes. #hpm 15/

Docs tried lots of interventions to "fix" Dad. But administering Drug A caused harm. So they administered Drug B to fix that harm, which in turn caused a second harm. And on and on... Sometimes, you think, maybe stopping everything altogether is best. #hpm 16/

W/o the medical interventions, but w/ pain relief/sedation, Dad died in 2 days. But unlike the hospital, which limited the number and age of visitors, hospice let us bring in as many kids/grandkids as we wanted. Everyone got to say goodbye, pray together w/ chaplain. #hpm 17/

Afterward, I felt wave of guilt. Did we deprive him of fluids? Was he thirsty? My old friend Sam Goldman, now a geriatrician in N.H., said offering IV fluids would only have "prolonged the dying process" a couple days. #hpm 18/

When people are near death, they're not hungry. Trying to force liquids or food can make things worse, hospice told us. #hpm 19/

Watching an elderly person die is not like in the movies, where they close their eyes and are gone. It's hard. Did we do everything perfectly? I think we made it as good as it could be. Being educated ahead of time really helped. #hpm 20/

And you know what? Even the experts -- people who literally devote their lives to end-of-life research -- say they still second guess themselves. @hgp010162 said she kept "replaying the movie" after he mom died of covid. #hpm 21/ khn.org/news/article/c…

Throughout this whole process, I felt so fortunate that my dad had "regular" pneumonia, not covid, b/c we could be with him and have a funeral. Millions of people have missed out on that. #hpm 21/ khn.org/news/article/c…

So. to sum up, I'm glad my years of health reporting gave me some preparation to help make end-of-life choices for my dad. But no amount of preparation is ever enough. Even experts second guess themselves, so don't feel guilty if you do, too. #hpm 22/

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