When people don't act the way Charris did

[DianaCox]

So while all that was going on with Charris and her cousin in the hospital, I had a somewhat parallel situation going on with a friend.

M is a woman just a few years younger than me. She has been (and still is) my hairdresser for at least the last 12 years, and is also a personal friend. She has been to our house for family parties and during one of them, met our next door neighbor whom she has now been seeing for 2 years. She is also a real estate agent - she works both part time, so the hair stuff keeps her income steady between house sales - she often gets leads from her hair work - the point being, she's smart, resourceful, and determined.

She is also Iranian, and came to the US as an adult - which means she has very noticeable accent. Her parents are here too - I've never met them, but I know she has a difficult relationship with them, especially her mother. Neither speak English very well (or possibly at all).

Friday, when I got my hair done, I asked how things with her and her family. And she told me her father was in the private hospital near my house, unable to eat - because he's dying of pancreatic cancer. She told me he had had chemo and radiation treatments, and didn't want anything more, and the tumor was preventing him from eating, so he was starving to death. BUT - she said that that morning, he had suddenly demanded that she find him something to help him. So they talked to the doctor, and he said he could put in a feeding tube on Saturday - by this time, her father had been about 4 days without nutrition. So when I went home, I did some internet searching on clinical trials, and found that there is a doctor in San Francisco who is running several pancreatic cancer trials.

I spoke to her again on Monday - she was very upset and frustrated - they kept screwing around and still hadn't put in the tube. I asked her if she wanted my help but she was kind of vague - I didn't want to intrude. Then yesterday afternoon (Wednesday), she called to say her father was doing very poorly, and STILL didn't have the feeding tube - the 15' procedure had been scheduled for 11 AM - and the doctor never showed - he'd gone on vacation!!! - and she was getting a complete runaround from everyone in the hospital.

So I told her that I knew someone who could with one phone call put me in touch with the CFO of the hospital, and asked her if she wanted me to do it. She equivocated - but I got in touch with my best guy friend (long story - we had both worked with the CFO on a business matter years before when he worked for a different hospital and they had stayed casual friends) and asked if he could put me in touch with the CFO if necessary. My friend was wary of overstepping, and asked me to get more info - starting with M's father's name (which I don't know - I've never met her family) and detailing what exactly happened, so he could be succinct when calling CFO for help. I texted M and told her what I needed to help her - and M never gave me the info - said she'd given up. I couldn't get her to fight.

Today, she said that he's now too ill to even have the feeding tube - pneumonia is setting in, he has had no nutrition for 10 days. And she has lost hope. She asked me to help by finding out how her brother could get a bereavement fare from FL to get her - which I did, and then he decided not to come.

I tried to get her to fight - I don't know what was going on - she COULD have done it. I don't know if it would have done any good - he is dying of pancreatic cancer, and that's often very fast - but she said he wanted to fight, to try something and I offered to help. I'm frustrated - I asked my husband, because he's very fond of her too, and a better judge of people - he said to let her come to me for help. I know it probably wouldn't have done any good - and a feeding tube might have prolonged his suffering - but I don't know what to think about the whole thing. I don't know why M wouldn't take my offer of help, whether it was a cultural thing about going over the doctor's head, or knowing that her father was dying anyway and not wanting to make it worse - but I am sitting here feeling very conflicted about whether I did the right thing by waiting for her to ask me to intervene.

I feel thwarted at every turn trying to help M. And fully aware that NONE of this was about me in the first place.

I'm glad Charris was so strong, and had so many of us surrounding her with support - M maybe needed more of a community helping her to fight.

 

[KathyF]

I understand. There were times when my parents were sick and rather than fighting for what could be done, would just accept what the doctor said. Especially my mother. There were times we had to fight for certain treatments and care. Though in general the hospitals she was in were pretty good, I have to say that the skilled nursing facility was a trial. Once an aid pulled off a fentanyl patch and threw it away, thinking it was just a piece of tape, and there were no other patches on hand to replace it. They had to order it from a pharmacy in another town 80 miles away! I will never understand why they couldn't use a local pharmacy. In the meantime my poor mom was in agony and I had to argue with the nurses to try to get them to give her more pain meds to tide her over until the patches came in.

 

[Sheanie]

Yeah, Diana, I feel your pain. Sometimes the most difficult thing to do is to step back and NOT help. I do not help people anymore unless they specifically ask me to. I've gotten into situations like your hairdresser's and later regretted all the time and effort I wasted on someone who really didn't want my help at all.

 

[Munchkin]

You are a step up to the challenge, take charge, make things happen kind of person. That's just who you are and it's a good thing. You are at your best when things are at their worst. But this was one you couldn't fix. The important thing is, you offered. You tried.

It would have been great to get him into a trial of some kind but it was not to be. And I am almost certain you didn't know the whole story. Pancreatic tumors don't usually inhibit oral ingestion of nutrients. And you have been around long enough to know that when non-medical people describe medical issues you can drive a Mack truck through the holes in the story. Especially if their first language is not English. And totally stressed because their father is dying. Then you also have cultural issues we just don't understand.

There is the belief that you just do what the doctor says to do. It wouldn't be respectful to do anything else. And if the doctor said it, it must be true, right, and correct.

Here's the best death ever from Pancreatic Cancer. The father of a woman I used to work with. They were Samoan and the family was very large. The father was diagnosed and got a second opinion. Hopeless. Just a matter of time. So he took the whole family on a trip to Europe. They had a great time. The last stop was Amsterdam where he was an assisted suicide patient. The end.

I got a chance to talk to him before he left and he told me that's how he wanted to spend his money. Much better to go on vacation than waste it on treatments that were not going to work and only prolong his misery. It was very important to him that he be remembered as someone other than a dying old man.

 

[DianaCox]

That is a great story Pat - thanks. Though I can't quite imagine DOING that, either as the protagonist or as a member of the family.

 

[Munchkin]

That is a great story Pat - thanks. Though I can't quite imagine DOING that, either as the protagonist or as a member of the family.

He presented it to his family as his last wish and they felt bound to honor that wish!

 

[Elizabeth N.]

I think that's a terrific story too, though I doubt I could do it myself. I'm a firm believer in the idea of people facing death having choices and options. My dad's last doctor, who was rather nuts and wound up in prison (unrelated to treating my dad!), looked him in the eye in my presence and told him in so many words that if Dad were to decide he wanted "The Big Shot," the doc would give it to him. I believed him.

Other family members were horrified when they heard that story. I appreciated his willingness to give Dad an option other than eating a pistol if that's what he wanted.

 

[Spiky Bugger]

That is a great story Pat - thanks. Though I can't quite imagine DOING that, either as the protagonist or as a member of the family.

That's cuz you've never had C Diff? Or Interstitial Cystitis (IC)? Or been old?

I have experience with both of these we-really-don't-know-how-to-fix-this diseases...and I'm older. I'm maybe ten years away from the point when both of my parents were entering dementia and fraility and a prolonged period of what is essentially death by a thousand cuts.

DH and I had several discussions about his getting out of my way...and my getting out of his...should either of us decide to end our own suffering while we had the ability to do so. Out of fear of NOT having pain relief when needed, I always accept and fill drug prescriptions...and I almost always underuse them. Every few months, I go through my meds and reorder things that have refills available. And the safe deposit boxes at the bank are a good place to keep such things...so they are not TOO handy when a maudlin moment strikes.

In fact, when I was first dx'd with IC, I learned that the suicide rate was four times the suicide rate of average, age-adjusted, NON-IC people. I wasn't ready to "end it all," but it was an option...and had a terminal disease been part of that, I'd certainly be among the dearly departed at this point.

(For those fortunate enough to never have heard of IC...imagine how a Urinary Tract Infection feels. The pain, constant pain and pain spasms, urgency, frequency, all that stuff...except that there IS no bacteria, and therefore nothing to cure...you just try to treat the pain. Except that you cannot do your job if you have to pee every 40 minutes, and that means you NEVER get more that about 30-40 minutes sleep, and you spend all your time drugging up for the pain and never really getting any REM sleep and you get a little unreasonable at the same time. IC was the first disease listed on my medical retirement papers.)

In my case, neither IC nor C Diff allows for much air travel...unless you charter your own plane and have total access to your own restroom. But The Amsterdam Solution sounds wonderful to me, especially compared to the alternatives.

 

[MsVee]

It is hard making life and death decisions. We lost my older brother at age 42 to liver disease. He never had the discussion of what he wanted in terms if DNR or anything else.

My mother was approached by his doctors 3 days before he died asking if they could turn off the machines as his condition deteriorated because there was no hope of recovery .

My mother lost it. She said she never talked to him about it and did not feel capable of making that decision. My dad had died unexpectedly 4 months previous and was not around to help her decide.

After watching her agonize we had a family meeting and each if us prepared a letter with our wishes AND appointed someone to make those decisions on our behalf.

My brother passed on his own and my Mom was not forced to make a decision she could not live with. The problem is some people don't make any preparations for these things.

You also need to know who will fight to honor those wishes. It is so hard because there really is no right or wrong.

MsVee

 

[Spiky Bugger]

It is hard making life and death decisions...

...You also need to know who will fight to honor those wishes. It is so hard because there really is no right or wrong.

MsVee

Unless you inadvertently end up in a Catholic hospital...and far more hospitals than we imagine ARE being purchased by Catholic organizations...and those folks are convinced that there is a right and a wrong and that THEY are always right on this issue.

http://newoldage.blogs.nytimes.com/...atholic-hospitals/?_php=true&_type=blogs&_r=0

 

[bugirll]

This whole situation is why the vets refuse to blow rainbows from their ass. This is life and death, not ******* basket weaving. They have seen people die.

 

[MsVee]

I can only imagine how heart breaking to make that decision and how the facility intervene. That seems invasive.


MsVee

 

[MsVee]

This whole situation is why the vets refuse to blow rainbows from their ass. This is life and death, not ******* basket weaving. They have seen people die.

I wish more people would realize this is major surgery and treat it with the respect and thoughtfulness it deserves.

MsVee

 

[bugirll]

"I heard of this guy who sews on buttons...I think I will ask him to make my wedding dress" Who the hell would do that? Well, it seems a lot of people think that way.

 

[DianaCox]

I am very proactive and have always thought of myself as being that way. Until getting involved in bariatric surgery issues, it never occurred to me to check the credentials of a doctor.

"You know what they call the person who graduated last in the class in medical school? Doctor."