When to accept Mom's decisions regarding her medical care.

In My Humble Opinion
1

My mom is 82 and starting to show signs of cognitive decline and short term memory loss. Along with that has come periods of heightened anxiety. For the past 2 years I have been managing her medical care by making and keeping track of her appointments, going with her, giving information to the doctors about her conditions and test results, and explaining it all to her. I think her ability to make decisions is starting to decline. I need to get my thinking about this straightened out before something more critical happens. Basically, I have to balance her possibly faulty thinking against my desire to respect her genuine wishes, as well as considering her best interest and quality of life.

Yesterday’s events illustrated this dilemma. She asked me to cancel an important appointment with a cardiologist because she had a lot of anxiety about our driving during ordinary snow flurries; I overrode her wishes, and we went anyway. The purpose of the visit was to see if she could benefit from an angioplasty, and whether it was worth the risk to do an angiogram. Mom was adamant that she did not want either of them, but it was clear to me that this was mostly because she intensely dislikes going to the hospital (she broke both her hips one after the other, and hated her stays in hospital), and she had heard that there was some discomfort involved. Fortunately, the cardiologist felt that she didn’t need either procedure, so the point was moot. But the dilemma still remains in my mind: what if he said she needed them?

In my opinion, an angioplasty is a relatively benign procedure that takes one day, and does not require a stay in hospital. If it could give Mom better energy, clarity of thought, and a better chance to survive her next heart attack, then I would have persisted in convincing her to accept, and I think she would have eventually given in. Part of my reason for doing so would have been that her objections are mostly based on a desire to stay home and avoid aggravation and discomfort.

ETA: Oh crud, I posted in MPSIMS. Should have posted in IMHO. Will ask a mod to move.

But if the situation involved, say a diagnosis of cancer, and she refused chemo because she wanted no part of the side effects, then I would likely just accept her decision.

In between these two clear areas is the mushy grey middle where I’m a lot less sure how to proceed. I guess if I felt she was refusing out of inertia and desire to avoid bother, I would be inclined to pressure her to accept, but if it seems like a reasonable assessment of the pros and cons, I would be more likely to just let her chose. This is all more complicated because of her declining memory and ability to think. I am her designated decider in her power-of-attorney if she becomes clearly incompetent, but right now, she’s neither totally her old sharp self nor totally out of it.

Have you had to “help” an ageing loved one make decisions like this? On what did you base your decision to agree / contradict? Do you think I should just shut up even if I think she’s making a decision against her best interest? I know this is going to come up again, and I need clearer guidelines than I have now.

2

I think elderly patients have the right to refuse any treatment they want - especially an invasive procedure like an angioplasty. This includes the right to refuse pills and the right to cancel doctor’s appointments. I think they hold this right as long they’re conscious even if they’re not really mentally competent to decide medical issues. They may have bizarre reasons for saying ‘no’, but I believe their ‘no’ must be respected.

I think it’s acceptable to ride herd on them about their appointments and medications but you can’t force them to do things. The only thing I would do specifically against an elderly patient’s wish is to commit them to a nursing home or extended living facility. Nobody wants to go to those, but sometimes they really are the only sane way to get an elderly patient access to round the clock care. In that case I wouldn’t be siding against the elderly person specifically but supporting the not-quite elderly in their refusal (or inability) to be the on-call nurse. I don’t think elderly patients have the right to impose their needs on someone else.

But when it comes to what they do with their own body it’s their choice all the away. That’s how I see it, anyway.

3

Is this not a good reason to decline treatment? I’d think by 82 she has every right to desire to stay home and avoid aggravation and discomfort.

My mom is about in the same boat. My concern is that my two brothers who live with her, and who are pretty much dependent on her (a whole 'nother thread for another time), will do everything and anything in their power to keep my mom alive, whether she’s tired of the fight or not.

I do not envy your position. We all have to walk that fine line - what’s best for Mom vs. what’s best for me. And no one likes to let go of a parent. I have no idea what you should do, but I wish you and your mom the very best. Good luck. Hi to your Mom!

4

Not a lawyer.

Have a discussion with her about your concerns and encourage her to complete your state’s verision of a health care proxy (HCP) that generally (may vary state to state) would name a proxy to make health care decisions for her if she became incapcitated by illness. The goal is for the proxy to make the same decisions that the patient would if they could advocate for herself so it would be good to get a sense (like you seem to have already, but to know more specifically) of what she would and would not want done.

Along those lines, before the cognitive impairment gets worse, encourage her (or perhaps if she has a doctor that she feels comfortable discussing this) to complete your state’s equivalent of a Living Will or Advanced Directive to give guidelines about what she would want done in a critical illness. Some areas addressed (again varies from state to state, patient to patient) may be whether the patient would want CPR if their heart stopped, if she would want a breathing tube (intubation), would want artificial nutrition (a feeding tube), etc.

A couple of web resources

  1. PDF from JAMA patient education
    http://jama.ama-assn.org/cgi/reprint/284/19/2550.pdf

2)from AAFP (family medicine orginization

good luck!

5

I’m going to second the need for a discussion and HCP/living will/advance directive(s).

Until the legal documents are in place you have no legal standing to make decisions on your mother’s behalf. You can NOT put off doing this until you need them, because by then your mother is incompetent to make decisions. Without them, her care will be what the doctors decides, and whatever laws some busy-body religious fanatic will have pushed through the legislature.

We have found my mother’s HCP, etc. invaluable these last few weeks.

The other thing is, even if you don’t agree agree with your mother’s advance directives you still are required to abide by them. But at least she will have formally stated her wishes and you won’t have to guess.

6

This is a very emotional area and you have my best wishes.

As you undoubtedly know, the main factors are:

  • a person’s right to refuse treatment for their own reasons (especially when elderly because the end is in sight and a shorter comfortable life may be preferred to a longer life of constant operations etc.)

  • an elderly person wanting something that is sadly too much strain (e.g. living at home but needing 24 hour care which they can’t afford)

  • helping those you love to undergo a beneficial procedure they are scared of

  • feeling you have done everything you can for those you love

Both my parents (and the family) faced difficult decisions. (They were in their 80’s and had been married over 60 years. They were wonderful people.)

My Mum got bowel cancer (hard to diagnose), then was rushed to hospital when it took severe hold and had the choice of lasting a few months with constant operations or passing peacefully in a hospice with no pain.
She chose the hospice, telling the family that she was horribly uncomfortable after previous operations (pain, couldn’t breathe properly).
We (the family) all agreed, and visited her regularly. She had a morphine drip and thus no pain. She passed in her sleep after a week.

Because my Mum had been my Dad’s carer (she was very active until the rush to hospital), Dad had to go into a nursing home. He didn’t want to, but he would have needed 24 hour home nursing care (because he was nearly blind and couldn’t get up without assistance) and we simply didn’t have the money.
Again we visited Dad regularly. He was lovingly brought to Mum’s funeral, but you could see the light had gone out of his life.
He passed a month after Mum died.

7

My dad and my mother in law are also making medical decisions that I don’t agree with. I’ve been somewhat aggravated with my dad about it, but he is making the decision based on his preferences so there’s nothing I can do about it.

A co-worker of mine years ago had a similar issue. His dad decided that he would no longer undergo dialysis. My co-worker asked him if he knew it meant he would die, and he said yes, and that was that.

It’s frustrating, but until they really can’t make decisions (as opposed to decisions that we simply don’t agree with), there’s really no choice but to be supportive and continue to assist where needed.

8

Thirded, but understand that it’s not going to kick in unless she’s unable to make a decision or declared incompetent. The standard for incompetence is extremely high; in practice, I have rarely seen someone who was able to verbalize a refusal having it denied.

The HCPoA discussion might help you discuss the OP issue with your mom, and it’s extremely important to do that while she’s still “with it”. You can ease into it by bringing up a friend or relative whose mother made some bad medical decisions after cognitive decline. (What? You don’t have one? What difference does that make? :slight_smile: )

I wouldn’t even bring up the fact that she’s showing some signs of early dementia; she’s likely to get defensive. I’d phrase it like, “Bob almost worried himself to death because he didn’t know what to do about his mom. If I ever started to worry that you weren’t making good medical decisions for yourself, how would you want me to handle it?” (Make it something she can do for you.)

If she’s willing to discuss it, see if she’ll agree to this: if she makes a decision and both you and her primary care doctor feel like it’s a bad one, she’ll reconsider it. Then make an appointment with her PCP to talk about it. You might even call him in advance to discuss it–he can’t give you any particular info, but he can talk to you about it. Maybe get her to write a note to herself saying that she’ll do that. None of it is binding, of course, but it might make her reconsider if the time comes.

(If she doesn’t have a good primary care doctor, go find her one.)

The most important thing, both for this and for HCPoA purposes, is to understand exactly what her wishes are. Does she want to live to be 100 no matter what? Does she want you to push if even the slimmest chance exists that she’ll make it? Would she want to keep going if she couldn’t leave the house, or if she didn’t recognize her children, or if she couldn’t communicate? What is she most afraid of? Once you understand all those things, make sure if the time ever comes that you’re pushing for what she wants, not what you want.

Good luck to you.

9

Trupa, you may be more familiar with the Personal Directive (PD), which I believe is what we call such documents in Alberta. I don’t know if we have any off-the-shelf, fill-in-the-blanks forms for a PD valid in Alberta, but certainly a lawyer can draft one for you. If you’d like more info, PM me and I can look into it a bit further.

Hope everything works out OK for you. My sister and I are watching our Dad grow old, and we’re going to face these questions soon.

10

Bingo. If the discomfort of being sick eventually outweighs the desire to stay home, she can make that decision then.

11

First of all, thanks very much to all of you who have taken the time to offer your thoughts and experiences.

Regarding the living will / personal directive, Mom already has one, the official drawn-up-by-a-real-lawyer ™ kind. It clearly states that she does not wish her life to be prolonged by artificial means should there be no hope of improvement or no hope of regaining competent awareness. I am completely fine with that decision, and would not have any problem respecting this. It also appoints me to make decisions for her if she’s incapable. But as DoctorJ pointed out, she’s far from there, fortunately.

What really bugs me is what I feel to be decisions that would have a major negative outcome for her, taken for what seems to me to be silly reasons. Like not going to the cardiologist for fear of driving during an ordinary snowfall.

My own feelings are in this are quite confused, which is part of why I am turning to you for guidance. I must admit that I am not particularly emotionally close to my Mom, but I have an iron-bound determination to fulfil my filial duty to her. Looking after her is a considerable effort & inconvenience without much reward, but I am constantly afraid of allowing my being fed-up with this to influence me against her best interest. (I don’t know if I was clear, there)

Add to this mix that I was there when she had her previous heart attack, with full-blown classic symptoms, but did not pressure her to change her mind about refusing to accept EMS transport to the hospital. Her main reason for not going in was that she hates being in the hospital. Because of the way her disease had progressed slowly, the EKG the paramedics took did not show signs of a heart attack, even though she was having one, so I relented. So now I feel that I blew a call and cost her a lot of damage to her heart. I know, I know, it wasn’t officially my decision. But I also know I could have browbeaten her to go in. And now, I’m paranoid about " blowing another one".

This is hard to figure out, I want to do the right thing, and, like I said, my emotions aren’t helping.

So it seems the consensus I’m hearing so far is to let her decisions stand, even if she choses to refuse life saving treatment because she doesn’t like hospital food. I sorry if that sounds bitter, it’s just the way it feels to me. Did I understand you properly Merneith?

But even if you’re not saying what I expected, I do appreciate your opinions. I have come to see that the combined opinions of dopers does hold a lot of wisdom.

12

IMO you can’t do this half way – you can’t allow her to make decisions until she makes one you don’t like at which time you overrule her.

This has to be an all or nothing thing – she either is competent or she isn’t. If you think she is no longer capable of managing her own affairs, you need to have her sign the necessary papers, or hire a lawyer and go to court if she won’t sign.

If you’re not willing to do that, if you don’t think things have gotten to that point, then respect her decisions.

13

This is how it worked with my ex’s dad. We new something was very wrong when one day he said, “Perhaps I should see a doctor…” because he’s always refused to go, even when he fell broke his noes and needed stitches.

To this day we don’t know what was wrong with him although we suspect he had some kind of cancer, either colon or prostate, because his cleaning lady regularly found blood drops near the toilet. He never told us what the doctor said other than that he needed some tests. He didn’t want the tests, never took them, but stopped eating and finally wasted away and died. It was very sad, but he lived a long and fulfilling life and wasn’t particularly interested in being uncomfortable for the remainder.

However, he didn’t have any cognitive disfunction. He was getting a little dopey as far as remembering stuff, so usually someone had to go with him to appointments to make sure he understood and would remember instructions, like for his glaucoma drops. You had to remind him to take medicine sometimes and he started telling the same stories over and over. But he was still definitely in good enough shape (mentally) to make his own decisions about personal care.

14

Oh you don’t owe me any apologies, trupa. I’m sorry if I sounded brusque up above. My own family is dealing with a similar situation. There’s no easy answers I’m afraid.

In your hypothetical, I would say yes, she could refuse hospitalization for crappy food or ugly pajamas or whatever she wants. Now, we would have a long, and no doubt, loud, conversation about why she should go to the hospital and what the consequences will be if she doesn’t. I would be willing to smuggle in some nice pj’s or fresh milkshakes, if that would make a difference. But if she put her foot down, I’d respect that.

To give another example, my grandmother doesn’t like taking her medicine. She hates taking pills and she has food issues and she can’t keep track of time. It’s complicated. But after discussing it with her, I believe that she understands that not taking her pills means she will have to go back to the hospital and she doesn’t want that. (They’re heart & blood pressure pills mostly.) So I nag her take her pills and she’s gotten less argumentative about it because we’ve discussed the consequences. I don’t just say “take your pills” like I’m giving orders. I try to always frame it as “you need to take your pills so you don’t get sick again and have to go to the hospital.” But if there comes a day when she just doesn’t want the pills and says so, regardless of consequences, that would be it for me. I wouldn’t try to hide the pills or try to commit her so the doctors could force the medicine in an IV. (Even if she went to a nursing home, I’d support her if she insisted that she wanted no more medicines or interventions.)

So that’s how I see it. I’m not saying everyone should do it like I would, trupa. That’s just how I would handle it if I were in charge. I hope you and your mother have many healthy years together yet.

15

Well, did she HAVE to go to the doctor that particular day? My mother used to cancel her doctor appointments on cold days because cold weather caused her physical pain in the form of angina. Because of this, and her general frail state, non-emergency appointments were frequently rescheduled. So, to someone else, her reluctance to go on a typical winter day might seem “silly” but there was a real reason even if she didn’t always articulate it well. As my mother’s health declined and she became more and more frail she developed more and more reluctance to go places, which, again, might seem “silly” to someone else but it had a lot to do with her feeling weak and vulnerable. You said your mother has fallen and broken both hips in the past - is she afraid of walking on slick surfaces? If so, then even a little snow might generate a real anxiety, and possibly a real risk for her. Sometimes you have to think past the obvious.

You need to be careful to walk the line between reminding mom to do things and ordering mom around against her wishes. That isn’t easy.

16

Well, you’ve got 2 issues, it seems to me. First is cognitive impairment; when should she stop driving, organizing her own medications, voting or handling a firearm, then you’ve got the decision to undergo tests or treatment on the quantity vs quality of life spectrum. It may help to try and separate them, best of luck.

17

I also wanted to say, trupa, you can’t blame yourself for this sort of thing. You and she made a decision based on all the information you both had at the time. Ultimately you can’t know what might have happened if you’d made a different decision so there’s no good to be had from tormenting yourself about it. Bad things happen. Our bodies wear down. If this event didn’t cause damage, something else eventually would have. In the end, every dam will leak.

That sounds bleak but I don’t really see it that way. It’s just how the system was designed to permit new growth. Again all this is just my opinion.

18

Gosh, yes. I broke a hip in 2003 and breaking another one is a constant worry. It’s not just a fear of walking on slick surfaces. With brittle bones (and osteoporosis), you don’t have to fall to break something. The bone breaks, and then you fall.

Putting myself in your mom’s place, I’d appreciate someone caring enough to encourage me to maintain my health and even push me a little if I needed it. Listen to her, draw her out when she gets stubborn, find out why she doesn’t want to do whatever it is. (It sounds like this is what you’re doing.) But if she still refuses, accept her decision. Trying to force her would just add to her anxiety, and at 82, that’s not a good thing.

You’ll have to take these events one at a time – there’s no one plan of action that will work for every situation that might come up.

And good on ya for being so thoughtful. :slight_smile:

19

No offense, I hope, but your mom is 82 and has had two broken hips and a heart attack. Saying, in essence, “To hell with going to the doctor - trying to make it to 85 is more trouble than it is worth” is not necessarily a bad decision.

She hates to go to the hospital. I am sure there are a lot of reasons for that, but one of them is that it hurts, and nothing much about her is going to get better.

There is a function in medicine that makes you feel better, and another that keeps you from dying. The older you are, the less you get of one, and the more of the other.

Suppose you are offered the choice - you can live for two more years, getting older and sicker, and then dying at the end of it. Or, you can live for four more years, getting older and spending most of your time and energy doing things you hate. And then dying at the end of it.

You can make a reasonable case for either.

Regards,
Shodan

20

Ok, this I can wrap my mind around. Clearly spell out the consequences of refusing, ask her to explain them to me to make sure she understands them, and try to mitigate whatever peripheral factor she mentions like the food or pajamas. If she a) shows me she understands the consequences, and b) still refuses, then I accept her decision. Have I understood you correctly?

I must admit it *feels *like the right balance, but it is much more clearly summarized than the jumble of thoughts and feelings that were bouncing around in my head before we thrashed it out here. You’ve been a big help guys, and especially you Merneith. Thanks very much.