I'd guess in the US, someone in that situation would just die sooner from natural causes.

One of my college professors developed ALS and he lived a long time in a completely debilitated state. I'm sure because he was a physician and his wife was a person of some importance tied into the local medical community, plus they had a constant rotation of physical therapy students who helped him, that it was longer than the typical person with ALS.

I can't imagine a person on Medicaid who gets ALS would have anywhere near the same life expectancy.

Congratulations, you have the clickbait title game down pat.

Yes. It is a sad state how limited resources affect so many with chronic illness. But I'm not sure ALS is the best disease process to highlight this.

I have cared for many end stage ALS patients. The worst. I have also had a few camp out in an ICU for weeks/months because they or their families refused care facilities. But the awful reality is that it is 24/7 job when they progress. Their bodies are gone, but the mind intact. Managing a ventilator. Constant suctioning, as the next mucus plug could kill them. Pain/spasms from lack of moving. Pressure ulcers. Constant clean up. To do this at home rquires a dedicated family member or three to provide round the clock care, with as much support as they can get. If that is not possible, then care facility is the appropriate place. Full stop. Whatever country you live in.

And, if her disease was not end stage end stage, but she chose Hopsice/Palliative Care before getting to the above paragraph, that would not be unreasonable to me.

Not necessarily, as in you don't need to be a person of means nor a "position of importance."

A friend of ours passed two years ago from ALS, after a 17 (I think) year battle. He was not of means, but did have a very loving and caring support system around him and his wife. It is my belief that that is the larger determiner in fighting diseases like ALS.

I do grant you, however, that in general the poorer you are the shorter you will survive with that type of diagnosis.
- Jeff

I do agree that this situation is horrible.

I wish noone to have to go through any of it.
- Jeff

That was my point, being poor almost certainly cuts your life short here too, you just don't have the option to end it early in most states. I wasn't saying necessarily being well off extends the lifespan, but that a person with means and connections, etc. will on average live longer if they have a debilitating chronic disease that requires an immense amount of care.

Interesting that the very next story is about a guy who's MAID request is being held up by the system.

In any case the system is, for lack of better words, good and truly fucked. And nobody realizes how much so until they're in it, or have a person in it.

My Dad has Alzheimer's / dementia and we've been dealing with the system for about 5 years now, from home care to doctors to long-term care facilities to hospital emergency rooms. When he was at home, the most they would give my Mom was 13 hours of homecare assistance per week. And the people they would send would work from 8 - 4:30, which wouldn't allow my step-mom to actually work herself. For 2 years I spent 2 days / week with my Dad, in his home; my mom did 3 days (missing work), we had someone for 1 day from the CLSC and he went to the local Alzheimer's support center for 1 day a week. (They only allow 1 day). It was exhausting, and my step-mom was not yet 60. I feel terribly for the 80+ crowd that attempt this, wearing themselves to the point of exhaustion or worse.

He's now been in public LTCs for 2 years, and they are no better - woefully understaffed, the staff they have poorly motivated and undertrained. The hospitals are overflowing, inadequately prepared to accept people with mental disabilities. COVID certainly didn't help.

In this woman's case, it sounds like she wasn't completely honest with the panel. At 55 hours of in-home care per week, she was already better off than most. It's really sad that (here in Quebec, anyway) we spend on average $95,000 per person / year to house them in the public LTCs but won't spend a third of that amount providing home care. Even if we had the available personnel, which we don't.

I support MAID, I wish it was an option in my Dad's case. I'd also really hate to be the one on the panel, making the decisions on yes or no, that has to suck...

Have you had to visit an emergency room in the US lately? I heard a story on sirrius doctor radio last week, woman went to ER with heart attack like symptoms, waited 12 hours, and just left , as she said, if i die, i die. I'm going on year and a half without a primary care doctor because they can't find a replacement for the one who left.

I've always thought chest pain was a ticket straight into the back?

i forget what city she was in but no, she was told to wait. The doctors that took her call were astonished.
And i know it's not a one-off, mother in law in Bucks county had a similar horror story a month or so ago.

That seems like just asking for a lawsuit. Any delay in treatment for someone who might be having a heart attack (or stroke) is going to cost tissue and invite a poorer prognosis if not death.

malte wrote:

Congratulations, you have the clickbait title game down pat.

Maybe so but this is outrageous. When MAID was promoted as an idea the most eggregarious examples were presented to promote it. Another story a while ago of a man in London, Ontario who on two occasions is sent somebody to discuss if he wants medical assistance in dying. Not the doctors taking care of him or somebody who knows his situation but somebody else. Think about if you are seriously chronically ill what sort of message is that sending.

In the presence of inadequate healthcare funding this is a disaster. Next up this coming spring is medical assistance in death for people who are having intolerable suffering due to mental illness. Will they get adequate assessments to make sure all avenues have been used to relieve the suffering. Nobody knows.

https://www.ctvnews.ca/...841?cache=kyifhaaa#:~:text=Roger%20Foley%2C%2042%2C%20who%20earlier,offering%2C%20among%20other%20things%2C%20medically

In most communities in Canada there are only a few MAID providers. My county has 100,000 people and there is one (a nurse practioner) maybe two. Sometimes these people are true believers that this is a really good idea. So the patient is much more likely to get MAID than an impassive assessor. What could go wrong?

The legislation needs a rewrite and a rethink.

---

They constantly try to escape from the darkness outside and within
Dreaming of systems so perfect that no one will need to be good T.S. Eliot

In BC the home health situation is a nightmare too. There’s a big push to age at home but completely inadequate support in place.

In her mid-70s my Mum ended up being primary care giver for my Dad. They were supposed to have someone show up in the morning to help dad get up and dressed and in the evening to help him get ready for bed. They were frequently hours late or no-showed. Sometimes Mum would get a call they weren’t coming, usually well after they hadn’t showed. It’s 1pm, we already figured out the 8am person isn’t coming. Often there was no call at. The social worker was overwhelmed and incompetent. The other people who came were largely very good, but so poorly managed.

She got four hours of respite care a week. Four hours to get all her errands and appointments for the week done.

The stress of dealing with the home health system was almost as bad as the stress of caring for Dad. Mum was so overwhelmed she ignored her own health, including a growth in her belly button that turned out to be from ovarian cancer.

Then after dad was in a care home we briefly got to deal with home health for Mum’s palliative care. Guess what, it still sucked. So instead she went into a soulless hospice and we still had to fight for her to get dignified care.

Yeah, I’m not happy the system here.

Chest pain usually gets people right back. I used to work in an ER (30 yrs ago, I know times have changed.) A few months ago I had bad abdominal pain and didn't want to go to the ER because of what a mess it is. I was going to wait for a scan in a day or two. A buddy who's a doc quite literally demanded that I go in that night. Still, I waited hours for another buddy of mine who's an ER doc to get on shift because he said he knew they were overflowing but he'd get me right back. I wound up with a bed in the hallway (they let me keep my street clothes on "because you know someone" which honestly was great) for four hours, but in that time I had an enhanced CT, was diagnosed with a nasty acute appencitis, and was eventually taken to emergency surgery at 3:30 in the morning for a ruptured appendix. Perhaps it wouldn't have ruptured if I hadn't waited days to go in because I was literaly embarrassed to be a middle-aged (okay post middle-aged) guy going to the ER because his tummy hurt.

Of course, now I'm getting random bills with no explaination, the latest from the hospital for over $4,500, which I will likely just pay, but I also wonder how some of my employees would be able to pay this much without having problems.

A big problem is so many people, usuallly poor, treating the ER as their primary care doc. There are many reasons for this and we need to address those reasons, which I'm doing right now by randomly posting anonymously on an internet triathlon site sub-forum.

Yikes. My parents are approaching 80 (and thankfully still in great health - came to their place to see my dad on the roof doing some "light" de-mossing work the other day...). But I know their health wont last forever and stories like these scare the crap out of me. Healthcare in BC is well and truly broken, and Victoria seems to be one of the hardest hit areas. I can't stand listening to Adrian Dix speak on the subject. The man is truly incompetent.

I'm sorry your family had to go through that.

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Long Chile was a silly place.

That's probably not the whole story but deets

Or at least an evaluation to determine not a STEMI....I'm calling bullshit on the story unless a mass trauma event was ongoing

To fix it they need money and people. Money might be doable, but every part of the economy is hurting for staff. I don’t see how this gets any better any time soon.

It’s a good time to start having conversations about downsizing, aging in place, assisted living options and the like with you parents. We thought we were ready, we just didn’t realize how broken the system was. Or how fast Dad’s deterioration due to Parkinson’s would be.

To not be a total Debbie Downer, we did get Dad into a great care home. The staff were lovely and genuinely cared about him. The management wasn’t fantastic, but the staff made up for it. He truly felt that it was his home.

It's not all funding , my mom is in a home, they are trying to hire more staff but are having a hard time finding qualified people, Ms. 50+ is a nurse she retired and went casual meaning she's on call, I kid you not she gets so many calls she has turn down most of them, there's a real shortage of nurses and psw's, yes we need to invest more in heath care but right now like everywhere there's just no staff to hire.