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 Slow Medicine 

Is quantity of life more important than quality of life?
Poll ended at Thu Feb 11, 2010 4:56 pm
yes 17%  17%  [ 2 ]
no 83%  83%  [ 10 ]
Total votes : 12

 Slow Medicine 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Slow Medicine
So right Leone - no matter what each of us wants for ourselves, let it be known to your spouse, kids, or whomever may need to make decisions on your behalf. I was very thankful that both of my parents had done this before the crises happened. I'm glad that VT now has a sticker that goes on your driver's license saying that my AD is on file with the state, and on the back of the license it lets you check off several different things about being an organ donor. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 2:34 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Slow Medicine
I'm in favor of almost anything that would preserve or improve the quality of life, and not too enthusiastic about measures that prolong life after quality is gone. But sometimes it is hard to sort out which measures are which, isn't it?

Some "growth" was noted in my mother's pelvic area (I can't remember just where now) when she had an exam in a TCU. She was told to follow up on it after discharge. She chose not to. (Mother may have MCI, but is basically competent to make decisions.) I was with her when she saw her PCP (a fine geriatrician) later. The doctor asked if she wanted a referral for more tests for that growth. Mother did not. Doc said she respected that it was Mother's decision, but that she needed to tell her that if cancer was found, it could be treated. Mother said, "No. I would not accept treatment. I'm nearly 90. I have had a good life. If it's my time, I'll go. I would not have treatment so I don't want to know if I have cancer." Doc looked at me and asked how I felt about that. I said that Mother is able to make that decision for herself, and I'll respect it. Of her 7 kids, some of us took it in stride better than others, but we all accepted it and did not pressure her to change her mind. On the other hand, we found out that Mother was not taking her bp medication and we each had our personal version of a hissy fit. :P To some it may seem odd that we'd accept not finding out about and treating cancer but we wouldn't accept not taking a pill each day. For us it was about quality of life. Having a stroke and living another 5 to 10 years would be miserable. (Her oldest sister just turned 100.) Take the pills, Mother! We now have a nurse set them up for her once a week, monitor her blood pressure, and how consistently she is taking the pills.

Coy feels very strongly about his DNR instructions, to the point where he asked his cardiologist to take out his defibrillator. The doctor was floored. I don't think he had ever encountered that request before. We finally convinced him that careful thought went into this and it needed to be taken out. Well, he did not want to subject Coy to another surgical procedure but he agreed that he would take it out when it was time to change the batteries in his pacemaker (which was soon.) To us, the pacemaker seems a quality-of-life device, but the defibrillator is a device to extend life. I'm not sure if that is correct, but that's the thinking behind our decision. When the doctor came out to the waiting room to report that the procedure went well, he also said, "I think you made the right decision." Apparently he'd gotten over his shock and had taken our perspective seriously. And he probably won't be quite as shocked if he gets that request again.

Take these two pills, but not those three? Have this procedure but not that one? It is really a case-by-case decision, in my mind. It certainly is not always obvious what is a "quality of life" measure. But it does help a lot to know our LOs outlook and attitude about the subject.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Jan 20, 2011 11:22 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Slow Medicine
Very interesting post Jeanne. It certainly gives a person a lot to think about. Nan


Thu Jan 20, 2011 11:33 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Slow Medicine
I have a great aunt who was diagnosed almost ten years ago with some kind of abdominal tumor who chose not to treat it at her age. She turned 101 this past August and is still in remarkably good health except near blindness. If she had opted for surgery she might not have made it this far.

She was a mountain climber in her younger days.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jan 20, 2011 11:38 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Slow Medicine
We faced some of these Quality of Life issues a couple of years ago. My LO received a pacemaker about five years ago when she was diagnosed with atrial fibrillation (AF). Two years ago we went through some of the same experiences with her cardiologist when she asked that the pacemaker be removed. At the time, she was in a much earlier stage of LBD. This is graphic, but she threatened to remove the pacemaker herself (she's a nurse and could probably do it). The md declined to remove or shut down the two leads by computer, but said he would not replace the batteries when it was time and disabled one lead. Subsequently, I spoke privately with him and was convinced that disabling the pacemaker would not cause her death; in her case it just keeps the heart rate above a minimal level (50 bpm). He considered it quality of life. My LO was mollified by having one lead disabled.

The other decision came when, following an ER Doc's advice after a fall, I took her off coumadin, which is the real treatment for AF. She could suffer a stroke at any time but considering all the falls she has had since then and the dangers of hematomas I think it was the right decision. And taking coumadin was a huge quality of life issue since it meant a weekly blood test and constant dosage adjustment because the blood readings swung wildly from week to week (I actually graphed them).

You're right, these decisions are tough! AnnieN

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Annie, daughter of brave Marie, dx 2007 and in ALF


Fri Jan 21, 2011 11:28 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Slow Medicine
Annie,
I have to say I would do the same thing with the coumadin, it really does interfer with quailty of life , I can't even imagine someone taking it and facing the issues of LBD at the same time.

I take Plavix and that is a pain in the butt too but no blood testing like what you were saying but the bruising yes I always look like someone beat me up LOL.

I recently was away at my daughters and woke up with a black eye, I didn't do anything so my best guess I rubbed it wrong during the night!

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Irene Selak


Fri Jan 21, 2011 11:43 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Slow Medicine
Dale had surgery to remove melanoma on his chest in 2001. We have seen no obvious recurrance in the check-ups every six months. However, I'm now watching a tiny spot in his groin. Every time I change his condom catheter twice a day, I see it and wonder if I should point it out to the doctor.

I absolutely hate the idea of surgery in the soft area of his groin. I know what we went through with the chest surgery. I also know that molar transplant surgery a couple of months ago set him back mentally.

I will keep watching it .... but I will keep the information to myself for now. I know what melanoma looks like....

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Fri Jan 21, 2011 11:46 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Slow Medicine
You are right, Annie, and you point out another factor that I hadn't considered -- the issues around the treatment itself. Coy takes coumadin for AT, too. He gets his blood checked about once a month, and sometimes it even goes longer. His results are very stable -- he has been on the same dose for over a year, and adjustments before that were very slight. On a nice day in the summer, if he is having a good day, he can ride his electric cart over to the nearby lab and get the blood test taken care of himself. Having the bloodwork done is not at all a quality of life problem for him (at least for now). But needing a weekly test for someone who has problems travelling would be another kettle of fish altogether. If they ever come up with a simple at-home test (like glucose meters for diabetics) that would alter decisions too.

Coy's geriatrician took him off virtually all medications except the new ones for LBD when that diagnosis was made. (He was one of those whom Lewy grabs with a bear hug to start with, and he had all kinds of the dreadful symptoms and behaviors.) When Lewy backed off a little and Coy settled into more typical "early" symptoms, she added most of the other medications back. Since it was now apparent he had some quality of life to preserve that changed the attitude toward what was worth treating.

It is not as easy as just saying "we believe in slow medicine," is it? But it is very helpful to think through our basic outlook and attitudes and to have a framework for making tough decisions.

Thanks for sharing your experience.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jan 21, 2011 11:57 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Slow Medicine
Jeanne, they do have Protime/INR meters with strips similar to glucometers. I have used them for my home health patients. They [and the test strips] are rather expensive and the strips are temperature sensitive but for compliant,, careful patients or their families, they might be a useful tool, especially if lab visits are difficult. Here's an article:
http://patientselftesting.com/

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Jan 21, 2011 12:14 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Slow Medicine
Thanks Pat! That is great to know. We'll continue with the lab visits as long as Coy is able, but it is comforting to know there is another option, if visits become a problem and quality of life is such that we'd still want to continue.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jan 21, 2011 12:39 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Slow Medicine
We actually applied for one of those meters when I was actually trying to solve this problem. However, when I looked into it further I would have taken the reading and would have had to call the results in to a contact assigned to me by the meter's supplier. Then, as I understood it, the contact would call the cardiologist's office to request a change to the medication (if needed). Since we were dealing with frequent medication changes I didn't like the idea of a middleman. I cancelled the order.

However, the meter was the same as the one used at the clinic where a pinprick was taken and it looked simple to use. Certainly an option for those who are stable. From memory, I believe it cost $10K that would be paid by medicare.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Fri Jan 21, 2011 1:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Slow Medicine
Wow, Medicare pays for those? Holy cow, no wonder it's going broke! :shock:

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Jan 21, 2011 1:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Slow Medicine
And just imagine if Medicare and Medicaid paid for everyone's LTC!

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jan 21, 2011 1:35 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Slow Medicine
When Coy had a visiting nurse I asked if she could take the readings. No, their agency didn't have a machine, but most of her clients have asked about it. It would make sense for Medicare to supply the agencies with these expensive devices, so at least they could benefit a large number of patients. That would only cover the small portion of the population that gets nurse visits, but it would be step in the right direction.

When I said "like glucose meters" I was thinking under $20 for the device and about a buck a pop for the test strips. OK, more than that would be justified, but $10,000? Whew! :shock:

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jan 21, 2011 1:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Slow Medicine
That would make a lot of sense and be very helpful, huh Jeanne. Unfortunately it is so difficult for large bureaucracies to be logical! Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jan 21, 2011 1:50 pm
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