Feedback POLST document and palliative care. Where is the "heroic measures" line?
My mom is on the Alzheimer's path. As her only surviving immediate family, I was advised I didn't need to worry about a healthcare directive. Recently, a social worker was out to the house and suggested we get a POLST on file with mom's PCP. Okay. I had JUST ready about POLSTs on post here 2 weeks ago when I was reading about "what to expect" with end of life (for a friend who's father was just admitted into hospice.) So, going through the various sections (probably vary by state), based on what I'd read about POLSTs, and Alzheimer's, it's advisable to be very careful when considering to what measures are taken...IV hydration, feeding tubes, etc. Mind you, these questions were thrown out and I was being asked to answer on the spot. I wanted to answer "it depends" on some of the questions, but that's not exactly an option. I felt like the woman thought I was a terrible daughter. But in the big picture - mom has a terminal illness (and more than her fair share of comorbidities) - at what lengths does one go to prolong her life when already the quality of her life is slipping away by the day? How far "is far enough"? What is too little? For example, when asked if she should receive IV hydration? Of course, I don't want mom to lie in a bed suffering...But, if she's unable to drink anything, I expect there's been some sort of serious intervening event...Same with feeding tubes. And then at what point, if she "isn't coming out of" whatever led to the need for either, do I decide "when it's enough". Where is the "heroic measures" line? I'm curious what others have considered or would consider in making these decisions.
Anyway. PCP said she'd need to make a referral for an OT to come out. Apparently, Medicare won't cover that unless a PT comes out first to do an eval....So 1.5 hours for an eval we "didn't need". Then a 1.5 hour meeting with an OT who did a home assessment and suggested a device with handles for the toilet. (Really? Why didn't I think of that?!) Finally, they thought it would be helpful to meet with the SW, "because she's a wealth of info." Not intending at all to toot my own horn (just that I have spent countless hours researching), I already knew of the few resources they recommended and more - they weren't aware of. Anyway, shortly before the SW left (after a 1.5 hrs) she took out her folder, pulled out the form and "went thru" it with me. I was sooooo ready for the meeting to end, I "tolerated" her second guessing just to get her out the door.
At any rate, based on your responses, I am going to put that "worry" about the SW behind me. So, again, thank you!
Tomorrow the PT comes back for a follow-up. (Why - I'm not sure...But it will be the LAST visit I will agree to!) So, 4.5 hours spent to get a dang piece of durable medical equipment! Crazy. Note to self: Do not ask PCP for a script...Cheaper to buy it than waste that much time.
Heather, I don't think "it depends" is the wrong answer to any of the questions put before you. If the person going over the forms wasn't prepared to give the time to have a meaningful discussion about these important decisions then find someone else who is. Maybe she has done this a thousand times and has become blase, but to each of her clients it is usually their first time and they need and deserve a little hand holding.
One brother is POA; both he, my other brother and myself have Health Care Proxies. Younger brother says "what ever you guys decide is fine with me". POA brother, his wife and I sit in the hospital coffee shop and struggle with these decisions.
1. Mom falls in NH, gets taken to hospital. It turns out her heart rated has slowed to a point that is incompatible with life, i.e., needs a pacemaker. Having researched what death from CHF is like, I say that I think that we should let her go. A nice easy way to go. However, a pacemaker is no longer an "extraordinary measure". (mom's advanced directive says no extraordinary measures). So we end up deciding to do pacemaker. (PS, the fall was CAUSED by the heart rate decline, not the other way around)
2. Mom's pleural effusions got drained and came back. She was taken to the ER, breathless. They tapped her chest again, and apparently, a pocket of bacteria from a previous bout of pneumonia "bloomed" and she became septic. Gasping for breath. They wanted to intubate, which we declined. They used a bi-pap machine to regulate her breathing, and with some really strong antibiotic therapy, she pulled through. But after 5 days in the hospital, she had contractures in both legs and despite a great deal of PT, is now wheelchair bound.
3.At this point, we agree that taking her to the hospital is causing more damage than it repairs. We move to palliative care. If they can't fix it in the NH, well, we're not agreeing to transport any longer. So mom gets pneumonia. The do 5 days of antibiotics and she's not getting better. They request permission to do an IV antibiotic that also requires them to do IV liquids, due to caution around kidney damage. We say yes, and mom gets better.
At this point, mom is mostly content (except when she gets sort of delusional, as she did this summer and thought that someone had told her she had leprosy). She can't really talk anymore (don't know if it's the dementia, the stroke or both). She knows us. She can eat and loves to eat ice cream. Loves having visitors. We take each medical crisis as it comes and make decisions based on her comfort and what is going to do the least amount of harm. My goal was, and is, to let her down easy when the time comes.
Don't let anyone make you feel guilty about making good decisions for your mom.
Everyone, EVERYONE should have an advanced directive. Only folks with significant illness or frailty need a POLST.
Hope others with more experience will chime in.
I read a lot about the issue. I read things written by professional organizations like the American Cancer Society, Alzheimer's Association and others who work in the field of treating dementia patients. I have also found invaluable information on sites like this one. I've also had candid discussions with the directors and nurse's at my cousin's Memory Care unit and her doctors.
So, when someone who has no idea about such issues comments in an offhand way, it rolls right off my back. They are not informed. Others can do what they please, but, it's a personal decision. Other's shouldn't be judged.
We are limited in what we can post, but I will PM you a link for a publication that I found helpful that was written by a doctor on Late Stage Treatment of Dementia Patients. He breaks things down and explains what you might encounter.
It's called A Caregiver's Guide To Advanced Dementia.