OT: End of life issues (sort of)

We've buried a fair number of friends in the past year or so. As we get older, we no longer look at these as "sad events" but, rather, also as "learning opportunities" -- figuring we'll eventually be on one of those "final glide paths".

Unfortunately, most of these relationships have been "arm's length". So, approaching the surviving family members for details about their departed's "last days" is ... uncomfortable.

We've tried dragging up details that we remember of others who've died in years past to put together chronologies of what their individual processes were.

E.g., drop dead of a heart attack after a bike ride is pretty straightforward: here today, gone tomorrow. Come home from a daily hike and keel over, same thing. Stroke out while driving to the ER, ditto.

OTOH, folks diagnosed with various types/stages of Ca and the treatments they received, quality of life they *appeared* to have, and, lifespan after Dx tend to vary. Our friend this week succumbed to CHF.

We started to make a mental list and scared ourselves at the number of bodies: "The hard part of getting older is knowing dead people"

So, we tried to focus on just the recent departed.

Working backwards from Jon, it appears hospice is an elective choice the patient (?) makes. The 'technicality" of hospice being that they *won't* save your life (e.g., no more trips to the ER when you're in distress - even if it is obviously terminal!).

It also seems to be that the last 2 days you see round-the-clock care. But, no sooner. As if a light goes on and says "we're down to the last 48 hours". I don't know if this is a skill the caregivers pick up (recognizing the last days). Or, if the patient is sort of ... "nudged" along (ISTR a friend's Mom was given ever increasing doses of morphine to manage her pain; no doubt the final dose was enough to put her over the edge?)

[Yet, we know folks who were "kicked out" of hospice for not dying fast enough? Perhaps a financial issue??]

Backing up even further, there is "palliative care". This is apparently different than hospice (?). Perhaps "pain/comfort management" because nothing else *can* be done. The distinction between it and hospice possibly being that you *can* revisit the ER for emergency care? I.e., you might not be eligible for any care that will change your morbidity but they (and you!) haven't thrown in the towel, yet.

[For example, someone with advanced stomach cancer probably "can't be saved" but that doesn't mean he'd be allowed to die if he had a heart attack, etc. OTOH, "in hospice", he would?]

Backing up even farther are the period after (terminal) diagnosis but in which period there may be some hope for extending life or improving (worsening?) quality thereof (e.g., chemo appears to be nasty!).

So, anyone care to clarify these things from first hand experiences? I.e., how "inevitable" and "timely" the consequences of each of these "milestones"?

[Sorry if it makes anyone uncomfortable to revisit issues that might still be "fresh" for them]
Reply to
Don Y
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Kinda in reverse:

Palliative care is pain and comfort management. It should be separate from hospice -- you need palliative care if you're hurting for any reason. Long-term palliative care is what you need if they can't fix the underlying cause. Short-term palliative care is what you should be getting from the first minute you roll into the ER, if you happen to be screaming in pain.

Hospice care is a response to all of the horror stories we heard a couple of decades ago about doctors who just wouldn't sit back and let people die in peace. You'd have someone riddled with cancer, they're going to die in a few weeks anyway, and yet they're hooked up to tubes and beeping boxes, and if they go into cardiac arrest some fella with arms as big as tree trunks is going to give them CPR so that they can spend their last moments in the pain that only having all your ribs broken at once can bring.

As far as the two-day thing -- usually, when people start to slide they start going faster and faster toward the end. One thing stops working, that stresses everything else, then another thing stops working, everything else is even _more_ stressed -- etc. We had a pretty good idea when my dad was going to pass because of the rapidity with which new things started happening, and the time that we could no longer get fluids down him.

Dunno about people getting kicked out of hospice. Around here the trend is, as much as possible, to try for in-home hospice. But then, hospice is supposed to be end of life, so if you're not dying -- why are you in hospice?

If you're going to die and you can't arrange for the massive stroke and/ or coronary, might I suggest a glioma? You'll go from physically fit with mild but strange neurological symptoms to dead in about six to nine months, and you can act as funny as you like because -- you know, brain tumor. Both my father and one of his brothers died from this, and compared to some of the gruesome alternatives, it didn't seem so bad (at least from the outside).

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Tim Wescott 
Wescott Design Services 
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Reply to
Tim Wescott

Hi Tim,

[Thanks for the reply; c> Palliative care is pain and comfort management. It should be separate

OK, so that's consistent with my understanding. You can live a long time under "palliative care" -- dying slowly but, hopefully, more comfortably than you might, otherwise. Do you ever "recover" from palliative care? I.e., does it refer to the actual care you are given or, rather, to the REASON you are being given this care (i.e., you are "terminal")?

If you'd been badly burned and are in horrendous pain -- but will/may recover, given time, is this also "palliative care"? Or, do you have to be dying to have it termed "palliative care" (sorry, I am not explaining the difference I'm trying to address).

Said another way, if someone told you that you needed palliative care, would you say, "Hell, yeah! This hurts like hell!" Or, would you say, "Oh, shit! How long do I have??"

Yes, in Jon's case, they had to remove the implanted AED prior to his being "accepted" into hospice. I.e., you *are* going to die -- soon!

But, does this happen over the course of *hours*? Or days/weeks? E.g., he went into hospice Tuesday and was immediately getting 24 hour care (some of which seemed pretty wasteful -- meal prep for a guy who isn't eating??). He died Thursday, IIRC. When we heard that he was immediately given 24 hour care, we *assumed* these were his last two days (based on our recollection of our other friends) So, was it that "obvious" that he was "down to the last 48"?

[There also seems to be some financial issue associated with the 48 hours. But, we've not been able to get close enough to ask those questions. Maybe the insurer only pays for 48 hours of 24hr care??]

I realize there are "in patient" and "out patient" (for want of a better word) versions of hospice. But, I can recall one friend commenting, blackly, that they had "kicked him out" (of the "program") because he "wasn't dying fast enough".

Again, this suggests there is some financial aspect that wants to limit costs by limiting how long you can receive hospice care (?) I.e., if you have a DNR and are non-terminal, why not sign up for hospice when you're 18??! :-/

From my understanding, some people bounce back (a little) in hospice. Perhaps because they are more comfortable. Or, maybe have less to "worry" about -- having accepted the outcome. I know Jon's last few months (year?) were tough on his family as he was in and out of the hospital many times -- and always with the knowledge that one of those trips could possibly be his last!

Dunno. I imagine it can't be a desirable experience! I'd love to sit down and grill someone (perpetually curious) but that requires a far too intimate relationship, IMO.

Personal question: does this suggest a hereditary condition? And, how do *you* address that possibility? (is there anything proactive that you can do?)

In Jon's case, he'd been pretty upbeat knowing that the rest of his family had died of heart-related problems 30-40 years YOUNGER than he! OTOH, that didn't give him a "Get out of jail, free" card!

[I had a friend dying of Esophageal Ca that PROBABLY would have obliged my curiosity. I think he actually took some comfort from my "gentler" questions about his condition, prognosis, treatment regimen, etc. Maybe hearing himself talk about it (he tried to hide a lot of what he was feeling from his family) helped him face the reality. On a few occasions, I suspect he was hoping I'd go a step farther -- but I chickened out. Wanting to know and being able to gather that information WHILE looking in the dying person's eyes seems a bit too intense... *regardless* of the degree of friendship! How do you NOT feel what they must be going through? While I'm still eager to "know", I'm not eager to have more opportunities to FIND OUT! :< ]
Reply to
Don Y

I don't fear death. I FEAR some Bible-thumping Do-Gooder demanding that I be kept alive.

Oregon has assisted suicide. I got the paperwork for end of life instructions from Kaiser. There are two check boxes: Keep me alive and Starve me to death. I called customer service and asked where to put the "kill me now" instruction. There is no place. And they were NOT amused.

Assisted Suicide? Not their problem.

They did offer to connect me to mental health counseling as I'm obviously deranged.

Problem with DIY is, that by the time you're ready to pull the plug, you won't be physically capable of doing so. I can barely c*ck the

380 now. I'm sure that would be confiscated at the emergency room anyway. Poor planning, shoulda bought a revolver.

Nobody can help without prosecution. Research into painless DIY has been fruitless. No hospice for me...

Reply to
mike

They get pretty good at it. My youngest brother is a doctor, and when my fa ther was dying of cancer (at home as it happened) I got summoned from Nijme gen to Melbourne about ten days before he died, to provide live-in-support for my mother. My younger brother - who lives in Sydney - got summoned down a couple of days before the end because he had to be in Switzerland a few days later.

Doctors see a lot of dying patients, and get good at working out how much l onger they've got left. It's not an exact science, but they know pretty wel l.

s

Adequate pain relief trumps keep a terminally ill patient alive for a bit l onger. We have a tolerably conservative oncologist friend who can't tolerat e euthenasia, but is perfectly happy with "effective" pain relief.

It doesn't fit the ethic, but American medicine can be rapacious.

A hospice is a place for patients who are going to die within a fairly pred ictable - short - span. Palliative care doesn't cure the disease, but keeps the patient comfortable, and can describe the treatment of chronic conditi ons, which may not ever kill the patient

Some patients with that sort of problem have a tag in their clinical notes "do not resuscitate"

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Chemo is designed to give the chemo roughly the same chance of killing the patient as the cancer, if the cancer is likely to kill the patient - this m aximises the over-all cure rate.

A friend of mine who had leukemia was strongly advised against chemo - on t he grounds that it was unpleasant and was highly unlikely to help - but got worn down by his relatives and family, who wanted him to "keep trying". He died of a bleeding stomach ulcer, which was one of the side effects of the third round of chemo.

Each case is different, and none are all that easy to predict. My father wa s 82 when he died, and his cancer advanced rather faster than his oncologis t had predicted - my father wasn't as elderly as he should have been, at hi s age.

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Bill Sloman, Sydney
Reply to
bill.sloman

Some doctors and hospitals confuse palliative care and hospice -- so you can't be entirely sure that you shouldn't be worried. But -- to channel my sister-in-law the palliative care doctor -- palliative care is _strictly_ about making people as comfortable as can be given the situation, no matter whether they're terminal or suffering from something temporary.

I suspect that his doctor knew something. I dunno about the insurance bit.

According to my brother-in-law the actuary, there is no statistical link to show any hereditary element to gliomas. Wikipedia disagrees to some extent, but doesn't have much else to say. So aside from the usual attempts at clean living, I don't think there's anything specific I can do.

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Tim Wescott 
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Reply to
Tim Wescott

[snip]

My hope has always been for the straightforward SPST ending... "click" you're done, no slow-death.

I sort of take life as it comes... spent Friday, June 3, thru Tuesday, June 7, sleeping on a very hard chair that folds out into a bed, in OASIS Hospital's ICU, then a hospital room.

My wife had 5 hours of back surgery to repair severe damage due to several falls over the course of the last 30 years. Now home, doing pretty good, therapist comes twice a week... she's walking and all the nerve tests are good.

I've been delaying attending to my own health until the wife was again mobile,

I'm passing blood in my urine and the doctors have no clue... but I'll take it as it comes.

As for EOL, there's the occasional church service, but the trend around here is for a "celebration of life" party... sort of like a New Orleans style "didn't he ramble" ;-) ...Jim Thompson

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| James E.Thompson                                 |    mens     | 
| Analog Innovations                               |     et      | 
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Reply to
Jim Thompson

When that happened to me, it turned out to be a kidney stone. The pain showed up a few days after the blood. My GP was relieved to hear about my discomfort - there are worse sources of blood in the urine.

The pain is supposed to be intense, but once the medico's had worked out what was going on I got painkillers that dealt with it when it showed up (which wasn't often).

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Bill Sloman, Sydney
Reply to
bill.sloman

What is with the obsession with alphabet soup? I have no idea what this paragraph intends to say... Are we really so lazy that we can't even type a name anymore?

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Rick C
Reply to
rickman

Sure they can! It happens all the time, SBC, Suicide By Cop. You don't have to c*ck the 380, just wave it around in front of a police station and they will help you on your journey.

Ever see the documentary, "The Suicide Tourist"?

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Rick C
Reply to
rickman

The pain of a kidney stone comes when the stone blocks the passage of urine and it backs up in the kidney. Not only can this hurt, but if left untreated it can do damage to the kidney.

Blood in the urine should not be ignored. Kidney stones are easy to detect and resolve. Leaving them untreated can cause *much* bigger problems, even the ones that don't hurt.

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Rick C
Reply to
rickman

If I can get down to the police station under my own power, I'm not ready to go. I predict it's gonna be a slow decline with good days and bad days and no clear decision threshold. I'm just gonna decide one day to get it over with. By that time, I expect I won't be in any position to go anywhere.

Reply to
mike

You know that is abhorrent and seriously frightening to alot of people. But I totally agree. When I get to the point where I can't enjoy life I think it is my choice when to end it.

But there is a big difference between that and kids killing themselves over Facebook posts.

Reply to
jurb6006

Palliative care doesn't cure the disease, but keeps the patient comfortable, and can describe the treatment of chronic conditions,

which may not ever kill the patient

My mother had a "do not resuscitate" order in her file, she was rushed to the hospital with breathing problems, they wanted to intubate, they told her, you have a "do not resuscitate order", do you want us to intubate? She said yes! I think if you can't breath defying your own order is very easy. She lived another six months in her home with my sisters care. She had several good months and was kept comfortable with Fentanyl patches. Her biggest health problem was COPD, she died at 84.

Thanks for everything mom, Mikek

Reply to
amdx

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Les Cargill
Reply to
Les Cargill

Was recommended to me by a hospice nurse, I found it very useful.

Reply to
Glen Walpert

Hospice is probably going to supply, at no cost, most of the medicine and a load of other stuff that a patient currently pays for out of his own pocket.

OTOH, there may be something, currently covered by an insurer, that a patient will no longer qualify for once on a hospice program, and hospice won't pay for that particular item either. In my Dad's case, that was Osmolite. Picking up the cost of Osmolite was going to be another couple hundred dollars per month for us. We hemmed and hawed, and told the hospice rep that was a deal breaker. Bye-bye.

It didn't take very long for them to come back with the offer to pay for Osmolite themselves. Everything is negotiable. Ask.

Dad's been on hospice for about 8 months now. And it's NOT an irreversible decision. He can quit hospice at any time. He can quit right at the ER.

Reply to
Alexander Galaxy

Kaiser (CA) will help you, if you ask them.

It's not official policy, you have to ask quietly, and not spuriously, but if you're terminal they'll work with you on it. (Save up your pain meds then bolus, for example.)

James Arthur

Reply to
dagmargoodboat

Hi Tim,

Sorry for delay; busy gett>> Said another way, if someone told you that you needed palliative care,

So, no way to know what they AREN'T telling you -- other than explicitly ASKING and hoping they've got the cajones to be honest (and not fall back on the "there's always hope" line...)?

Anyone know if these volunteer "patient advocates" do this sort of more aggressive "information acquisition"?

In Jon's case, that may well have been. He made the decision to go into hospice on the prior thursday, I think. But, they wouldn't accept him until the following Tuesday -- he had to have the implanted AED "disabled" as a condition of being accepted.

So, he'd spent the weekend in the hospital then was discharged directly (?) into hospice. As such, his MD had *just* seen him and may have instructed the hospice people as to his EXACT condition.

However, other friends have been "in hospice" for longer periods, attended by those hospice folks. This often does not include a real MD (and I think even the RN's only show up to "check in on things"; most of the care seems to be provided by lower wage folks)

Yet, whomever is making the "round-the-clock" recommendation appears to be making it at almost exactly the "D minus 48 hour" point. I can't imagine they are doing much beyond blood pressure, temperature, pulse, sorts of assessments (no blood work, ECG, etc.) Perhaps there are obvious indicators in these metrics? Lack of attentiveness? etc.

So, knowledge of your family history (at least THAT portion of it) is of no help in /your/ "planning"...?

Reply to
Don Y

But doctors tend not to see hospice patients. At best, an RN might check on them from time to time (its expensive to send someone to a person's home; that cost is already absorbed if "in hospital" or similar facility)

So, there must be other signs that are easily read by "lesser professionals"...

Yes, but there must be an actual *numeric* definition of "short". This is obviously related to financial considerations.

So, if that limit is X, then (assuming the recommendation to enter hospice is "well founded") a hospice recommendation is effectively: "You have < X remaining to live"

DNR is an option at any stage. Hospice *implies* (and enforces) DNR as a condition of the program.

Of course. As antilock brakes run the "system" to the verge of instability -- most effective (at stopping).

There has been some research (30+ years, now) into the *timing* of particular chemo doses (i.e., find the point where the chemo is most effective and the body most resilient). But, in most settings, there is no possibility of that fine-grained control over its administration: "Please report for your chemo at 10:30AM on Friday"

Our friend "next on the list" (depressing thought!) has been through multiple rounds. Has managed to eek out about 3 years of reasonable quality of life (most of the others seemed to get ~2 of rather dubious quality -- I suspect depends on the type of Ca). But, she is realizing this is probably the last round.

It's hard NOT to try to identify behavior/attitude problems as somehow significant between those who "went quickly" and those who "hung on".

Sorry for your loss.

Reply to
Don Y

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