Thoughts/experiences about extending end-of-life

In My Humble Opinion
1

Accompanied my wife to visit her MIL yesterday for the first time in a month or so. She was worse than I had been given to believe from my wife’s descriptions. All I can say is that she resembled a corpse as she lay crumpled, sleeping in her hospital bed. She is in assisted living, on oxygen, and on hospice. Incredibly frail. She has no apparent interest in food, and wears diapers. When sentient in years past, she said she did not want to exist like this. Tho if you asked her now, she would say she wanted to keep living. All relevant DNRs in place. Wife’s sister has power of attorney.

At this point, it seems just a matter of time before she dies. Last week the hospice worker said she couldn’t imagine her lasting more than a month. Of course, doctors and caregivers have been suggesting the end was imminent for the past few years…

SIL - who is calling the shots - seems to be walking back on the decision to put her on hospice. Wants MIL provided pureed food, objects to giving morphine, wishes other treatment continued, etc. In countless ways big and small seems to wish to increase the emotions and time invested in this death. My wife would prefer that MIL simply be allowed to die as comfortably (and quickly) as possible. Probably stop feeding her - maybe even disconnect the O2. Just let her die! But has to be careful to not say as much, b/c SIL is looking for someone to criticize/blame - and has accused my wife of wishing to hasten MIL’s death.

SIL’s position just strikes me as so selfish and cruel. I can’t imagine what is motivating her, other than a desire to see herself as MIL’s caregiver/savior. Whereas I can’t see ANY possible benefit to ANYONE (other than caregivers who are getting paid) whether MIL dies tomorrow, next week, or next month.

In large part, my wife long ago said goodbye to the person her mother was. I acknowledge that SIL apparently has not been able to do so. Her current efforts are aimed at saying goodbye (and IMO rewriting past familial relationships!) I understand these sorts of dynamics are very normal. But just wondering if anyone who has gone through or works with this sort of thing would be interested in sharing thoughts/experiences.

Damn, I’d put down a dog that appeared as miserable as the MIL. Glad my kids have agreed to do as much for me. Can’t get my head around the incredible time/emotion/$ being spent on so many old folk in similar situations. Really sucks to be of a mindset wishing someone would simply go to sleep and not wake up.

2

Things get weird in situations like this- some people are entirely irrational when it comes to the idea of life and death. I mean, some people get upset when a terminally ill person doesn’t fight for every last second of life, no matter how painful or uncomfortable, while other are of the feeling that maybe 2 weeks earlier, but with no pain or suffering is a better deal; what’s the benefit of 2 more painful weeks?

Sounds to me like SIL has finally twigged to the idea that her mother is about to really and truly die, and isn’t accepting it very well, while your wife came to that realization and accepted it long ago.

3

I can understand, and to a degree empathize with, the struggle of knowing when “enough is enough”. There’a lot of baggage in our medical system around “giving up” and “losing” the “battle” against terminal illness. Throw in a dash of filial guilt and people’s reluctance to talk about specifics they want and don’t want in end of life care, and you’ve got a recipe for agonizing decisions.

What makes me so angry I can’t see is the financially motivated ones. Doesn’t sound like what’s happening here, but the first time I realized the family I was working with refused hospice and wanted them to “do everything to save Grandma!” because they couldn’t lose Grandma’s Social Security check, I literally left the room and threw up. I get it. Times are tough. But you will LITERALLY sell your grandmother to suffering and pain for a Social Security check? I just can’t even…

4

We are fortunate that MIL has assets and that our standard of living will not be significantly affected by anything my wife inherits. And it is great, that such things as hospice seem to be gaining traction. The money is a MINIMAL concern. But I am somewhat disgusted by a growing medical/care industry that profits from what is iMO an immoral dynamic. Just because Medicare CAN cover something, doesn’t mean it should be done.

AND - the resistant sibling IS imposing costs on the siblings. The 3d sister COULD use whatever her 1/3 amounts to more than us. But the one making the decisions is subsidizing her preferences out of the estate.

FAR more important IMO, is the imposition of emotional costs on everyone else by the SIL w/ power-of-atty. She labors over and reconsiders every decision no matter how small, and is not content that the siblings might disagree. Instead, she wants their “blessing” of her choices. IMO the process of one person’s dying ought not demand such great resources from family members. We really do need “death panels!”

5

If the person whose life is in the balance is saying right now that they’re not ready to die, then that ought to be the final word. I certainly wouldn’t want someone else deciding on my behalf that it’s time for me to die because my continued existence makes them uncomfortable.

6

AIUI, if she has medical power of attorney, then her obligation is to make medical decisions based on her mother’s interests, not her own interests. It would be appropriate to ask her explicitly who’s interests she believes she is serving.

That said, I was confused by this:

OK, so MIL has explicitly declared, at some point in the past, that she would not want to live in her present condition. What leads you to believe she may presently feel differently?

7

One thing that was hard for my mother to accept when my father was dying was that putting someone in hospice did not mean you were counting the minutes until they die. Hospice care just has a different focus- on comfort and keeping the patient at ease rather than aggressive treatment. My dad was still getting most of his regular medications, and would get certain types of life-saving care if appropriate, but taking an approach that prioritized those interventions that kept him remain stable and comfortable.

My mom thought hospice= giving up and letting him die

The social worker helped her understand that hospice= medical care where the goal was a little different.

8

Why does your SIL object to morphine? I sincerely hope that the medical folks will treat your mother-in-law for anxiety and pain as she needs it, anyway. I just went through this with my dad and though I truly understand the desire to keep my loved one around, I can’t imagine doing that at the expense of his comfort.

I’m sorry your family is going through this, Dinsdale.

9

MIL has been mentally incompetent for several years. Incompetent to make any meaningful decisions about anything. I question whether she is even capable of reliably conveying her sensations/state of being/etc. Because of that, I do not understand why SIL even asks MIL about some aspects of care. But, my understanding is that when asked, she has indicated that she would prefer continuing to lie in a hospital bed. She has not gotten to the point I’ve heard of some aged/ill folk reaching, where she has expressed a desire to die.

If she were my mom, I’d pretty much just ignore her, and let her linger however long SIL wishes it to continue. For folk who do not have resources, I think it a valid question how much society should pay, simply because someone prefers one more expensive day of existence over death. Admittedly, a very difficult line to identify indeed.

10

It sounds to me like your wife has accepted the reality of MIL’s situation but SIL is still in the denial/anger phase of the grief process. She is likely feeling a lot of guilt and uncertainty due to her role as POA. I’ve been in this situation and all I can say is that family members can behave in ways that our completely irrational under this kind of stress. I am sorry you are dealing with this.

11

I can’t speak to overall experience, but I can give some thoughts here that might at least give some perspective. I was having a discussion with my mom a few years ago when she was updating her will and she was talking about all those provisions related to DNRs and vegetative states and all that. Fortunately, for me, she had made my brother the one responsible for all of that sort of stuff (he’s the oldest anyway), but still we had an important discussion wherein I basically said that I was glad because I’m just not capable of doing that, even knowing it is the merciful thing and that it is her wish. Without getting into a discussion that would be largely irrelevant here, suffice to say that it wouldn’t be out of selfishness, though I also completely understand how it might appear that way to some. In fact, to the contrary, I hold a great deal of respect for those who are able to do that, aware of the tremendous act of love it is. In fact, I told my brother as much and thanked him for being willing and able to do it when I could not, even if I wasn’t ever going to be on the spot to do it.

My point is, I’m not sure how many have my particular hang up around it, but there are a number of reasons why one may have difficulty with following through, most likely having a lot to do with struggling with handling the grief, some unresolved issues she feels she needs to work out before she dies, or something similar. And I say all this, because I can only imagine how difficult it is for you all and the stress this is adding to the situation, I just hope a bit of perspective can maybe make dealing with it for a bit longer easier for you all and perhaps just being there for your wife’s sister can make it easier for her when the time finally does come, and perhaps avoid any of the blaming and resentment that these sorts of situations can often bring up.

12

And if they say they are ready to die…?

13

That being the case, I’m not clear about your objecting to your SIL’s decisions regarding her mom’s care. it sounds like you would prefer to take a course of action that flies directly in the face of your mother’s most recently expressed feelings about end-of-life care.

The difference being that a dog can’t verbally express its preferences regarding end-of-life care.

14

Then let it happen, and keep the patient in comfort until it does. By “in comfort,” I mean that includes “without pain.”

15

This is an incredibly complicated and emotional decision for any family, and I’m not going to criticize anyone involved for how they want to proceed.

When my father had a devasting stroke, my sisters and I spent an entire day at the hospital discussing what kind of treatments we would and wouldn’t permit to allow him to die with dignity vs. the one-in-a-billion chance for a miracle recovery. Did food and/or water count as “treatment”? How about the prescriptions he was taking before he was stricken? What would we do if he developed a bed sore? Every hypothetical situation you could think of, we tried to work through it and come up with a clear instruction we could provide for the staff.

For all that, though, if my father had managed to say “I want to live,” even if it had been a hysterical shout coming out of nowhere and not directed at anyone, we would have told the staff to do everything they could.

16

I’m so sorry you are watching this. Our family was lucky that my mom had expressed her wishes before she got sick and was clear-headed and consistent even when death was imminent. My grandma had expressed that she didn’t want any extraoridnary means but every time there was a crisis she woiuld agree to being transported to the hospital. Finally my father had to be clear about what she really wanted, because ultimately she wasn’t going to get any better, and after that they could just keep her comfortable.

What would be hard for me would be “unseeing” the person in that state, and trying to remember them as they were.

17

I’ve been in your situation before (seeing someone I loved die) and send you my sympathies. It’s not an easy thing to go through.

Having someone’s Medical POA is a big responsibility. I wonder if SIL feels on some level that if she decides to let her mother go, she will on some level be responsible for killing her mother. I know that doesn’t make much sense, since of course the illness will kill your MIL, but emotions so often ignore logic.

Is it possible to have a family conference (in person, if possible, otherwise by phone) during which family members can express what their opinions and feelings are? If it were my family, I think I’d restrict the conference to close blood relatives of your MIL – her children, any siblings, adult grandchildren. Because although the decision lies with SIL, she should have the comfort of knowing what other family members think. It is a comfort I think for such decisions to be if possible shared.

18

I’ve gone down the hospice route several times now. Keeping in mind I am not a doctor and your mileage may vary…

I have been told by a hospice doctor I trust that when an elderly, frail person stops being interested in food and you get to the choice of feeding via a tube vs. them not eating that not force-feeding them (which is essentially what tube feeding is) is not usually painful. They lose interest in food because their body is starting to shut down and the hunger mechanism isn’t functioning we (or at all) anymore. When both my mother and father lost interest in food we chose not to force it on them. If they expressed hunger we provided food, we would ask every so often if they were hungry, but if they weren’t hungry no one forced food on them. As near as I can tell (and dad was lucid enough to speak up until the last few days) they did not suffer distress from eating little or nothing. I think we associate feeding people with caring and nurturing them and families sometimes move to tube feeding more for their benefit than the patient’s.

One of the hardest things about putting my parents in hospice and “letting nature take it’s course” was not doing things. When my mother stopped breathing and her heart stopped I felt a very powerful urge to start CPR, as I have been trained to do, and really had to forced myself not to take action. I had to force myself not to fret that mom wasn’t eating or drinking.

My sister-the-hospice-director (that hospice doctor I told you about) says that she often expends more time and energy on the families rather than the patients under her care.

My mother was becoming mentally less able in her last few months as well as physically debilitated. Fortunately, she had spent the prior 30 years not only verballing expression her opinions and wishes to all who would hear, she also wrote them down in legal documents. It made it a lot easier on the rest of us.

Nonetheless, we’d still ask her opinion. Just because her brain was diminished didn’t mean it was entirely gone. And then dad would have the unenviable task of deciding whether or not to consider what mom had just said. Mom got to a point where she was clear she wanted to stay home and no more ambulances or hospitals. It’s not so much that she wanted to die as she didn’t want to continue as she was - if there was a cure that would be one thing but there was no cure, she would never get better. So maybe it’s just that your mom wants to be largely undisturbed, not bothered - I don’t know, I’m not there. I can tell you my mom went like that, just getting to a point where she wanted quiet, dim lighting, and not much else. Dad wanted Jeopardy on the TV and a little more company. Dad was also more lucid than mom, it could be his brain could handle more input. Hey everyone is different.

People can get funny about things like morphine - there are so many issues in our society around drugs. As it happened, neither of my parents needed much in the way of painkillers, but having it on call, so to speak, was reassuring. Mom needed more anti-anxiety medication than anything else. Dad needed something for muscle spasms. Like I said, everyone is different.

I don’t know if any of the above helps. You have my sympathies and condolences. These things are never easy.

19

Yes, that is hard.

I was at my mother’s side when she died and “shriveled” would be an apt term for her physical state. On the other hand, even though it was a painful experience I wouldn’t want to have missed it. I absolutely know my mother’s death was as peaceful as it was possible to be. Helping to give her the kind of dying she wanted - at home, with family - was the last and one of the hardest gifts I ever gave my mother, but is was also probably one of the most valuable.

I have a lot of memories of my mother. The one of the night she died is only one of them. I try to focus on the others when it bothers me, and get out the picture album of happier times.

20

I’m sorry.

My husbands family and my family have different approaches to death - and when his brother in law was terminal I discovered how different - although I think my husband is more towards my side (pragmatic) than his mother and late brother (emotional and fearing death). Some of that is likely me rubbing off on him - although he has always been the most pragmatic of the three of them.

My take is that if you are lucky enough to pick your death (my brother in law could have gone from kidney failure or ‘whatever came next’) you take the easy painless way (kidney failure isn’t bad compared to tumors in your lungs suffocating you, or tumors in your brain causing seizures) - both for yourself and for your loved ones. But I come from a family where nurses and doctors seem to breed like rabbits - I grew up aware of what an ugly death looked like - as opposed to a peaceful one. “Drug me so I don’t feel pain or anxiety, and let me go.” My mother in law would not let go of hope. She never let him have enough morphine so that he’d be out of pain - so his last days were painful and anxiety ridden,