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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: Tue Jan 05, 2010 5:27 pm
Posts: 146
Location: Fl.
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Her numbers has been good. in Chol & BP. I will talk it over with her doctor.
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Tue Feb 02, 2010 11:26 pm
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Location: WA
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My husband had taken blood pressure medication for 30 years. In the past two years, his blood pressure became lower and lower--sometimes too low--and we took him off the antihypertensive. His BP has been fine without it.

Many times, patients remain on medications just because doctors don't consider whether or not they are still indicated. I guess we need to really question the necessity of each medication.


Wed Feb 03, 2010 12:04 am
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Location: Vermont
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My dad's numbers are really good. I am going to meet with his dr. about it next week. Knowing how my father thought about these situations when he was healthy, I think he'd choose to not take any life-prolonging meds at this point. When he can talk, the thing he says most is how he is in prison, how miserable he is, and indeed, his body and mind do "keep him in prison". Last time he and I went to visit a lifelong friend of his who had dementia, all he could say was "it would be a blessing if she could just have a quick and peaceful death.' Frankly, he's in a lot worse shape than she was at the time...... This is not an easy situation to consider, thus I talk with relatives, his friends and health care people a lot about this...... It definitely isn't something my sister and I treat lightly, and we talk a lot about how to proceed with his care.
Not everyone has the same philosophy about death, and I respect that. I hope that the people I talk with about this stuff have respect for all perspectives. It is not an easy discussion.


Wed Feb 03, 2010 10:47 am
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Joined: Tue Jan 05, 2010 5:27 pm
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Location: Fl.
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Well the Doctor appointment did not go as I hoped.
1, She says it is more dangers to take her off all the BP neds. But she will start buy cutting 1 dose in half then see how it goes. She says it would be worse for her and me if she had a stoke and survived. I do understand that. we are going to go slow.
2. She said about meds to help her sleep was the Nurologist to prescribe. Her next apt isn't for 4 months. I e-mailed him and just hope he gets back with me. I am past exahustion. For all those that have been 24/7 for years. God Bless You!!!
3. She is still losing weight. 3 more pounds. Even today,she ate breakfast. and does not want anything for lunch. Not even a smoothie!
Hope all is well with everyone,
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Fri Feb 05, 2010 1:26 pm
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Location: Vermont
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Hi Tammy - do your mom's doctors think she is in the final stages and her body is simply shutting down on its own by not eating or not drinking? I hope today goes better for you and your mom. Lynn


Sat Feb 06, 2010 9:36 am
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Joined: Tue Jan 05, 2010 5:27 pm
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Location: Fl.
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Lynn,
They don't tell me. THey say it is hard to determine. She is actually doing a little better physically. Just mentally she is gone. I mean the Nero, is telling me just to make her comftorable, I don't know. She does sleep a lot. I do remember another time when she lost a lot of weight and sleep a lot and not eating and I thought she was going , then next thing you know after about a week she picked right back up. This is a miserable disease. You just never know, and what it takes them down to..the quality of life is sad.
Last night I got her up out of the chair and she just started walking with her walker and before I could stop her she put her leg over the seat of her walker and sat on the seat. You talk about an awkward situation. I ask mom what are you doing ? She said she was getting in her car. Duh...... why didn't I know that? So she kept trying to get her other leg in and I was scared she was going to break something, or tear a ligament or something. I had to yell for my husband to come and will help me get her out. She kept telling me to put her other leg in.
Well, we finally got her out. My husband just looked at me and I looked at him like just don't ask!
Day by day...that is all we can do. I had to chose between sleep and a shower this morning, I chose sleep. Maybe tomorrow I can get a shower. lol
Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Sat Feb 06, 2010 10:44 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Tammy - your mom and my dad would make a great pair! My dad thought he was in his car with a flat tire a few weeks ago, when he was leaned way over in his chair and couldn't get himself upright. The caregiver thought he was having a stroke and sent him to the hospital. He kept telling everyone he was fine, he just needed someone to fix his flat tire so the car wouldn't lean anymore!
Yesterday he was trying to tell me about the big snowstorm they were having in MD. He was all upset that "these people who are coming to take me to dinner won't be able to get me there because they can't push me through the snow". I reminded him he didn't need to go out in the snow, that the dining room is 50 feet down the hall from his room. Then he said "It is too deep - there are 6 to 8 feet of people they have to push me through" (I think he meant 6 to 8 inches of snow). I called one of his favorite caregivers and asked her to tell him she didn't need to take him out in the snow to get to dinner. She is a sweet young woman who loves my dad, thank goodness! I have to laugh to keep from crying.
Please take a moment and get yourself in the shower so you at least have a few relaxing minutes to yourself. We have to remind ourselves to take care of ourselves. Where would our LO be if we get sick from the stress? Good day Tammy and everyone, Lynn


Sat Feb 06, 2010 10:56 am
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Joined: Tue Jan 05, 2010 5:27 pm
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Location: Fl.
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Lynn,
I do think they would. :)
I know she is lying down now.. I guess I am shower shy.. the last time I tried that during the daytime she woke up right in the middle of me shampooing my hair. lol I just never know when she will get up. She lies down for 3 hours to 5 mins. Over and over again. She is now starting to wander around the house looking in the cabinets( and we have child proof gadgets on them, they didn't keep her out), she thinks things are food when they are not. I am scared, I am just plain scared she will get up and get into something before I can get her.( I do turn up the motion detector on high when I go in the shower so I do her it when she gets back up)
That is why I shower normally at around 5:30am. Before she gets up. Today I just needed sleep worse. I did get sleep though. I took Nyquil, So when I did get up with her last night I was able to go right back to sleep! YAHOOO!! :)

Tammy

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I Can Do All Things Through Christ Which Strengthens Me! Phil. 4:13


Sat Feb 06, 2010 11:27 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Anyone see the PBS show on dr. assisted suicide on tv last night (I think it was in Switzerland)? The man whom the show was about had ALS. He was from the US and he and his wife went to Europe when his physical decline was so rampant. He wanted to get there before he could no longer swallow. It was a very thought-provoking show and there is a discussion group on the PBS web site. Haven't looked at it yet but it should be interesting. Lynn


Wed Mar 03, 2010 9:25 pm
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Anyone see Grey's Anatomy last week about a terminally ill patient who wanted her physician to help her die? It was very thought-provoking and covered a lot of the ethical discussions that have been talked about on this forum.


Tue Mar 30, 2010 10:30 pm
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Location: Vermont
Post Palliative Care
I just went to a wonderful presentation by Dr. Zail Berry, at the Univ. of Vermont Medical School. She's a palliative care dr., and if you live in or near VT and have or know someone with a terminal illness, she would be a person I'd want to see. The new web site for the palliative care team in the Burlington, VT area is www.vtpcrc.org
Her presentation was all about "patient centered" care, and how families, doctors and other close people need to honor the wishes of the ill person.
They included a link for advanced directives too: www.vtethicsnetwork.org

If you ever get a chance to hear her speak, I'd highly recommend it. She was very inspirational. Lynn


Tue Apr 20, 2010 9:35 pm
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Location: SF Bay Area (Northern CA)
Post Re: Slow Medicine
You mentioned the Vermont Ethics Network. I was reading "Handbook for Mortals" recently and ran across a terrific "values questionnaire" that the Network has written. This questionnaire has become part of my top resources on advance care planning.

Here's the questionnaire and how "Handbook for Mortals" describes it:


"Why should I make plans now?"
Discussions about what kinds of treatment you want at the end of life are likely to be most useful if you plan long before decisions have to be made. ...

Many of the choices you will make about the end of life will involve medical treatments. But these decisions are not likely to be the most important ones. Your ideas and hopes about the end of your life - being with your family, or making peace with God, for example - are the more meaningful ones. Your values and beliefs should guide medical choices whenever possible - not the other way around.

One way to approach these kinds of choices is to consider the questions on a values history questionnaire... These are not questions that you may have seen on a living will. Your answers will not be simple "yes's" or "no's." While this questionnaire may look complicated, it can help you to talk about your wishes with someone who may have to make decisions for you when you cannot. Filling out a questionnaire like this will help you think about how you hope things will be. Your answers will also be a useful way to get started talking with your family.


Values History Questionnaire

1. What do you value most about your life? (For example: living a long life, living an active life, enjoying the company of family and friends, etc.)

2. How do you feel about death and dying? (Do you fear death and dying? Have you experienced the loss of a loved one? Did that person’s illness or medical treatment influence your thinking about death and dying?)

3. Do you believe life should always be preserved as long as possible?

4. If not, what kinds of mental or physical conditions would make you think that life-prolonging treatment should no longer be used? Being:
* unaware of my life and surroundings
* unable to appreciate and continue the important relationships in my life
* unable to think well enough to make everyday decisions
* in severe pain or discomfort

5. Could you imagine reasons for temporarily accepting medical treatment for the conditions you described?

6. How much pain and risk would you be willing to accept if your chances of recovery from an illness or an injury were good (50-50 or better)?

7. What if your chances of recovery were poor (less than 1 in 10)?

8. Would your approach to accepting or rejecting care depend on how old you were at the time of treatment? Why?

9. Do you hold any religious or moral views about medicine or particular medical treatments?

10. Should financial considerations influence decisions about your medical care?

11. What other beliefs or values do you hold that should be considered by those making medical care decisions for you if you become unable to speak for yourself?

12. Most people have heard of difficult end-of-life situations involving family members or neighbors or people in the news. Have you had any reactions to those situations?

Adapted from the Vermont Ethics Network.


Mon Dec 27, 2010 12:04 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Slow Medicine
Thanks for posting this Robin. I am really glad someone has put together these extremely important and thought-provoking questions. I used their ideas for my own Advanced Directive, but my husband did not. We don't share the same ideas about some of these very important things, which can be frightening if you think about it! Hopefully he and my kids will honor my wishes. 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 10:55 am
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Location: WA
Post Re: Slow Medicine
Thought-provoking indeed! Excellent. How difficult it is at the time of decision-making to find those values. Here's an example which I found disturbing:

An elderly woman was in the hospital on life support with an exacerbation of a chronic disease. The doctors, typically hedging their bets, offered the family some 'hope' that she could recover to baseline if she made it through this crisis but were pragmatic enough to admit that they could not rule out frequent, repeat episodes where she would again require life support. The patient had left no instructions so the family had no knowledge of her wishes. One daugher wanted to remove life support, one son wanted to keep her on it indefinitely. The others were torn between. Heartbreaking for all as mean accusations flew across the room and many were in tears. The patient ended up being taken to a nursing facility with a feeding tube, surviving in a coma off the ventilator. I have no idea what happened to her after that. But what struck me was that, had she made her wishes knows ahead of time, the family would not have been faced with those gut-wrenching decisions in the middle of a crisis.

The reason I'm sharing this is to show how strong our emotions can be when we are suddenly faced with a 'life and death' decision. If we make the decisions calmly ahead of time, put them in writing and discuss them with our LOs we can avoid putting pressure on them later when we are unable to think clearly. I have my Advanced Directives and DNR all signed, witnessed and in the hands of my children. Other people would opt for other directives and I totally respect those directives. The important thing is to make them known and formalized before your family needs them.

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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.


Last edited by mockturtle on Mon Dec 27, 2010 11:44 am, edited 4 times in total.



Mon Dec 27, 2010 11:37 am
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Location: Ocala, FL
Post Re: Slow Medicine
I just copied the article and added my answers in red. I've now sent it via email to all my kids. I think they already knew the answers but this makes it very clear.

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


Mon Dec 27, 2010 11:41 am
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