Re: Do Heroic Measures = Feeding Tube?

[Guest guest]

The NH gave the family a book to read about end of life issues - and

I can't think of the name at this time - but while googling found

this PDF file:

http://www.alz.org/Health/Care/endoflifelitreview.pdf

At a quick glance it looks like it reads similarly to that book that

I read. Take a look and if I find that small book from the nursing

home, I'll respond again with the name.

>

> Hi All:

>

> The next family disagreement looming regarding the care of our LBD

> mom will be whether to use a feeding tube. Mom's health care

> directive states that she does not want " heroic measures " to

prolong

> her life. She did ask that if she is in pain that pain medication

> be applied.

>

> Now my sister with medical power of attorney will likely have to

> answer at least one of our siblings who will insist that Mom be

> given a feeding tube when she can no longer swallow food. Her

point

> of view is that she wants Mom to die of LBD and not of starvation.

>

> As members of this LBD support group, what is your experience with

> this dilemma? My personal position based on how I read Mom's

wishes

> and also research on LBD is that Mom should not be given a feeding

> tube. My understanding is that dying " of LBD " means that the

> patient loses the ability to eat, loses the ability to process food

> and that this is usually not uncomfortable. Also, the feeding tube

> could actually interfere with her ability to breathe, something

that

> would be very frightening for her.

>

> Thanks.

> Anne

>

[Guest guest]

Found it...

" Hard Choices For Loving People " - you can read the entire text on

their website: http://www.hardchoices.com/toc_hc.html

>

> Hi All:

>

> The next family disagreement looming regarding the care of our LBD

> mom will be whether to use a feeding tube. Mom's health care

> directive states that she does not want " heroic measures " to

prolong

> her life. She did ask that if she is in pain that pain medication

> be applied.

>

> Now my sister with medical power of attorney will likely have to

> answer at least one of our siblings who will insist that Mom be

> given a feeding tube when she can no longer swallow food. Her

point

> of view is that she wants Mom to die of LBD and not of starvation.

>

> As members of this LBD support group, what is your experience with

> this dilemma? My personal position based on how I read Mom's

wishes

> and also research on LBD is that Mom should not be given a feeding

> tube. My understanding is that dying " of LBD " means that the

> patient loses the ability to eat, loses the ability to process food

> and that this is usually not uncomfortable. Also, the feeding tube

> could actually interfere with her ability to breathe, something

that

> would be very frightening for her.

>

> Thanks.

> Anne

>

[Guest guest]

Oh, and to answer your question... Yes, Feeding Tube = " heroic

measures " . In my family we chose no heroic measures for mom - no CPR,

no feeding tube.

>

> Hi All:

>

> The next family disagreement looming regarding the care of our LBD

> mom will be whether to use a feeding tube. Mom's health care

> directive states that she does not want " heroic measures " to

prolong

> her life. She did ask that if she is in pain that pain medication

> be applied.

>

> Now my sister with medical power of attorney will likely have to

> answer at least one of our siblings who will insist that Mom be

> given a feeding tube when she can no longer swallow food. Her

point

> of view is that she wants Mom to die of LBD and not of starvation.

>

> As members of this LBD support group, what is your experience with

> this dilemma? My personal position based on how I read Mom's

wishes

> and also research on LBD is that Mom should not be given a feeding

> tube. My understanding is that dying " of LBD " means that the

> patient loses the ability to eat, loses the ability to process food

> and that this is usually not uncomfortable. Also, the feeding tube

> could actually interfere with her ability to breathe, something

that

> would be very frightening for her.

>

> Thanks.

> Anne

>

[Guest guest]

Hi Anne,

A feeding tube is considered an heroic measure towards end of life. It is

listed in the very

detailed list of heroic measures that would be accepted or not when admitted to

hospital

with possible end of life concerns. I agree with your idea on what death from

LBD

indicates. As extremely difficult watching your loved one lose weight and

expire from not

eating is, as my mother has approached that stage and then rallied, she was not

hungry,

not in distress. I was more stressed than she!

As well, the tube can be extremely painful and stressful to insert. My son's

girlfriend

needed one a couple of weeks ago for complictions after fairly minor surgery and

said

insertion of it was the most painful experience she has ever endured.

At this stage I feel we would be prolonging death rather than life with LBD.

As an aside, last month my FIL had a D tube inserted as a measure to build him

nutritionally for surgery to remove a tumour blocking his upper bowel,

preventing him

from eating. I questioned it at the time, knowing that what he was swallowing

was coming

back up so why pour more fluid into his stomach? At any rate, the combination

of acidic

gastric juices continuously coming up and irritation of the tube on his vocal

chords made

them swell, blocking his breathing, and he needed an emergency tracheotomy. The

surgery was cancelled, so now he is in final stages dying of cancer with a

tracheotomy,

which needs active nursing care preventing palliative care where we would have

preferred,

in the facility where MIL is currently. I know circumstances differ, but there

are possible

complications with any medical intervention.

I am with you in this decision.

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 1/2 years ago LBD diagnosis, evident much longer in hindsight.

Encouraged to give up her licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

Off Aricept since Feb./06-now eating and drinking less, uncommunicative, UTI.

>

> Hi All:

>

> The next family disagreement looming regarding the care of our LBD

> mom will be whether to use a feeding tube. Mom's health care

> directive states that she does not want " heroic measures " to prolong

> her life. She did ask that if she is in pain that pain medication

> be applied.

>

> Now my sister with medical power of attorney will likely have to

> answer at least one of our siblings who will insist that Mom be

> given a feeding tube when she can no longer swallow food. Her point

> of view is that she wants Mom to die of LBD and not of starvation.

>

> As members of this LBD support group, what is your experience with

> this dilemma? My personal position based on how I read Mom's wishes

> and also research on LBD is that Mom should not be given a feeding

> tube. My understanding is that dying " of LBD " means that the

> patient loses the ability to eat, loses the ability to process food

> and that this is usually not uncomfortable. Also, the feeding tube

> could actually interfere with her ability to breathe, something that

> would be very frightening for her.

>

> Thanks.

> Anne

>

[Guest guest]

maries1stdaughter wrote:

> As members of this LBD support group, what is your experience with

> this dilemma? My personal position based on how I read Mom's wishes

> and also research on LBD is that Mom should not be given a feeding

> tube. My understanding is that dying " of LBD " means that the

> patient loses the ability to eat, loses the ability to process food

> and that this is usually not uncomfortable. Also, the feeding tube

> could actually interfere with her ability to breathe, something that

> would be very frightening for her.

The last time my father was hospitalized before his death, a speech

therapist evaluated his swallowing ability and told my mother that he

needed a feeding tube as he was not swallowing without aspiration. Dad

had a Health Care Directive which stated that he did not want artificial

nutrition or hydration - which meant no feeding tube. However, this

therapist used guilt, discussing with Mom how she would be starving him

to death should she refuse to have the feeding tube installed.

Mom is an RN and she knew perfectly well what it meant to have the

feeding tube installed, but she couldn't live with the idea of making

the decision to " starve " Dad. She okayed the feeding tube.

Dad lived for another six weeks after the feeding tube was put in...if

one could call it that. He was in pain and he didn't get to enjoy the

taste of food in his mouth (a huge thing, for him, especially at that

point in his life) because the caregivers didn't want to be responsible

for him aspirating (although at that point, he had already and thus the

pneumonia from which he did die). The feeding tube itself, as far as I

know, was not a source of pain, but having it installed did not feel

good, no doubt, as any surgery is an issue.

When the time comes that I have to tell them yes or no for Mom, the

answer will be no. Mom responds so poorly to anesthetic, first of all,

that I am unwilling to make her undergo surgery, and she has the same

health care directive with instructions about artificial nutrition. That

was put in there specificially to deal with the idea of feeding tubes -

and I will respect the wishes she expressed when she was completely

lucid and cognizant of what this instruction meant.

I would rather have seen Dad die from malnutrition and the natural

progression of his disease than suffocating by way of his pneumonia. I

was present often during his last days and watched him struggle to

breath and wished, often, that Mom had not been made to feel so guilty

about carrying out Dad's wishes.

jacquiii

[Guest guest]

Quoting maries1stdaughter :

>

> Now my sister with medical power of attorney will likely have to

> answer at least one of our siblings who will insist that Mom be

> given a feeding tube when she can no longer swallow food. Her point

> of view is that she wants Mom to die of LBD and not of starvation.

>

I have to agree with your sister (and disagree with others who wrote -

who have

not yet actually been in that place).

I would say it depends on your Mom's over all health. My Dad was given Haldol

that knocked him into next week. We couldn't get him to take meds, water

anything - he sat catatonic. We gave him a feeding tube. The body can not be

expected to heal/recover from things like haldol infection etc w/o food/water.

Basically holding back the minimal needs is like saying we want them to

die now.

There is NO other possibility w/o food/water !

So if she isn't in pain, and there is nothing else " wrong " with her -

but LBD -

then I agree she should be given food.

Donna

> patient loses the ability to eat, loses the ability to process food

> and that this is usually not uncomfortable. Also, the feeding tube

> could actually interfere with her ability to breathe, something that

> would be very frightening for her.

The feeding tube goes right into the stomach - it doesn't interfere with her

breathing at all ...

>

> Thanks.

> Anne

>

>

>

>

>

>

>

>

>

> Welcome to LBDcaregivers.

>

>

>

[Guest guest]

Hi, Anne,

I am sorry that your family is even having to think about this issue because

it is an uncomfortable one to deal with. My father just passed away on

March 4 from LBD. He had a very long battle with LBD, and became unable to eat

the last month of his life. I did not put a feeding tube in as it would have

prolonged his suffering. His body was shutting down due to the LBD, and it

was just the natural course of the disease. Forcing food into a body that

cannot process it causes greater harm and discomfort than letting the disease

take its course. My dad was never sick with anything other than LBD during the

whole course of his illness - no colds, no pneumonia, no UTIs. Someone

suggested that not giving a LO a feeding tube is like saying you want them to

die

now. There is absolutely nothing further from the truth. Letting my dad go

was the hardest thing I have ever had to do, but the suffering just had to

stop, and it stopped on his terms. He did not want food and did not seem

uncomfortable because of it. His body simply could not tolerate the intake of

food

or liquid. I kept my dad at home with me through the whole course of his

disease, and for the last six months, I never left his side so my experience

with this comes first hand. It is really good to think about these issues

ahead of time, and I so hope your family can come to an agreement on things.

This, of course, is just my opinion, but I am in total agreement with your

thinking based on my own experience. I will be keeping you and your family in

my

thoughts and prayers.

Hugs,

Piper

[Guest guest]

I don't know the legal definitions of terms and imagine the

definitions would differ from one country to another--maybe from

state to state.

BUT

I was told that a feeding tube would kill my mother. People on

feeding tubes get more nutrition than they can handle so they

regurgitate more and get aspiration pneumonia sooner. The same

medical people (from several sources) also told me that my mother

could live at least a year on one scoop of ice cream a day or the

equivalent because her body needs are reduced.

The kicker, for me, was the idea that she might still be able to

pull the tube out no matter whether it went down the throat (which

would hurt I think) or was put in with surgery. My mother has little

use of her hands some of the time but can use them to feed herself

often. She sometimes chokes on every bite and other times can still

eat pureed foods without choking (or some combination).

One of my sisters was adament that mother should have a feeding

tube, but when she heard the facts she changed her mind.

Until recently I did ask my mother from time to time if she wanted a

feeding tube and she turned it down every time.

My mother is 84 and has been in a nursing home since January of

2001. She was in my house half a year before that. She takes only

Tylenol and vitamins and stool softener and a daily antibiotic for

chronic urinary tract infections. She is a Gauchers carrier and has

Parkensons or Parkensonianisms.

>

> Hi All:

>

> The next family disagreement looming regarding the care of our LBD

> mom will be whether to use a feeding tube. Mom's health care

> directive states that she does not want " heroic measures " to

prolong

> her life. She did ask that if she is in pain that pain medication

> be applied.

>

> Now my sister with medical power of attorney will likely have to

> answer at least one of our siblings who will insist that Mom be

> given a feeding tube when she can no longer swallow food. Her

point

> of view is that she wants Mom to die of LBD and not of starvation.

>

> As members of this LBD support group, what is your experience with

> this dilemma? My personal position based on how I read Mom's

wishes

> and also research on LBD is that Mom should not be given a feeding

> tube. My understanding is that dying " of LBD " means that the

> patient loses the ability to eat, loses the ability to process

food

> and that this is usually not uncomfortable. Also, the feeding

tube

> could actually interfere with her ability to breathe, something

that

> would be very frightening for her.

>

> Thanks.

> Anne

>

[Guest guest]

Thank you, . I read the booklet today and what a help it

is. I have passed it on to my sisters.

Anne

> >

> > Hi All:

> >

> > The next family disagreement looming regarding the care of our

LBD

> > mom will be whether to use a feeding tube. Mom's health care

> > directive states that she does not want " heroic measures " to

> prolong

> > her life. She did ask that if she is in pain that pain

medication

> > be applied.

> >

> > Now my sister with medical power of attorney will likely have to

> > answer at least one of our siblings who will insist that Mom be

> > given a feeding tube when she can no longer swallow food. Her

> point

> > of view is that she wants Mom to die of LBD and not of

starvation.

> >

> > As members of this LBD support group, what is your experience

with

> > this dilemma? My personal position based on how I read Mom's

> wishes

> > and also research on LBD is that Mom should not be given a

feeding

> > tube. My understanding is that dying " of LBD " means that the

> > patient loses the ability to eat, loses the ability to process

food

> > and that this is usually not uncomfortable. Also, the feeding

tube

> > could actually interfere with her ability to breathe, something

> that

> > would be very frightening for her.

> >

> > Thanks.

> > Anne

> >

>