Sat, 22 Jan 2000
"A growing literature from the hospice movement indicates that such patients do not experience more than transient hunger and that any thirst they experience can be assuaged with the use of ice chips and mouth swabs,"Gillick states.
If this is a serious consideration in your life and/or caregiving,
I urge you to read Choices in Death and Dying which provides a full process of what a body goes through when nutrition
and hydration is withheld. It is, as I said, purportedly painless. I discussed this at length with Hospice and they also agreed.
Hospice will honor a patients choice, tube or not so please do not
take the excerpt from Hospice literature contained in that article as promoting that they support a decision to withhold placement
of a feeding tube. In my first training session Thursday, to become a Hospice volunteer, that fact was emphasized over and
over again, the patients wishes come FIRST. If Hospice disagrees with those wishes, they'll remain silent.
What Carmen suggested is also very valid. A decision should be made
by a person with a terminal illness well in advance. As I've written before it was Kelly's decision, and orders in her medical
charts, NOT to have a feeding tube should the need arise. However Kelly, as well as Pam the young girl mentioned in Faces
of Huntington's, both changed their own minds about having a tube placed when the time to make the final decision on whether
they wanted to die in a short period of time or have the opportunity to live many more years with a feeding tube. Carmen's
Dave is still able to eat solid foods and to drink from straws months after removing his tube. Neither Kelly or Pam were healthy
enough, at that time, to live more than a few weeks without having the tube since they could no longer swallow.
So decisions made now can be reversed later. It is just hoped that
the person who changes their mind, in not having a tube to deciding to allow the tube to be placed, is cognizant enough to
show the people in charge that it is THEIR decision. Although neither Kelly or Pam could talk very much, they
both fully understood the questions they were being asked about that decision and provided affirmative and negative responses
to questions by nodding their heads. If they person is not cognitive then it is hoped their family members KNOW what their
feelings are before that situation arises so they can fight to have those decisions honored.
As Carmen mentioned, in nursing homes, the decision to remove a tube
after it has been installed may be very difficult to enforce without a painful fight. Here, it would be helpful to have Hospice
involved in your loved ones care as they will do everything in their power to make sure the patients wishes are followed thru
on. Hospice does provide support to people in nursing homes and, sometimes, can provide that little "extra" touch that nursing
homes aren't staffed to do, like send a volunteer to spend extra
time in feeding someone, washing hair, reading or just in general, being there.
Although Choice In Dying changed it's name 1/00 and is
now Partnership for Caring: America's Voices for the Dying, they still offer this book. You can get a copy:
Nutrition and Hydration and End-of-Life Decision Making Deciding whether to use artificial nutrition and hydration (often
called "tube feeding") can cause conflict and anguish for family members. Food and water are so powerfully linked with
comfort and caring that we find it difficult not to provide them, even when they cannot help the patient. This booklet answers
questions about tube feeding, patient comfort, and what to consider when making this decision. The cost is $5.95 and
can be ordered http://www.partnershipforcaring.org/Store/order_set.html
It's a resource I think every HDSA Chapter and support group
should have in their library for families.
Like others, Kelly, too was adamant about not having a feeding
tube when this possibility was discussed with her in the mid-stages of HD and the first time this was almost forced on her*
in the later stages of HD by her then doctor, she refused one.
A little over a year later things had progressed much more quickly
and she could no longer receive enough nutrition through eating to sustain life. The doctors wanted me to make
the decision to put her on a tube and when I told them it was Kelly's decision they approached Kelly and explained her choices
to her with the utmost amount of sensitivity
and caring possible.
They explained how, with a tube, she might have several years of a
good quality of life remaining or how, without a tube, what would happen to
her and that the end of life would be very
peaceful and without pain and that she would have their full support in whatever she decided.
She and I were crying
our hearts out while the doctor's explained this to her and when they were done and said they would leave her alone for awhile
to make her decision, she turned and looked at me as if to ask what she should do. THAT was another one of the hardest
things I had to do as a caregiver.......tell her that I loved her more then life itself but this was a decision I could not
make for her, then with the doctors we left her alone to think. When we walked back into Kelly's hospital room 15 minutes
later she said, in the clearest she had spoken in some time, "I WANT TO LIVE" grinning from ear to ear........ and I
could breath again.
And she did have a good quality of life for the next two years and then even having a feeding tube
didn't help and Kelly died from not receiving the amount of nutrition she needed to sustain her body. She died very
peacefully, without pain.
I guess what I'm trying to say is that even tho people make the decision earlier in the stages
of HD not to have any extra-ordinary measures taken...when the time DOES come, the decision and the options should be discussed
with them once more by a medical professional (if they are one to do it with some sensitivity).
Some do change their minds, some do not. As family, we need to honor
their decision no matter how difficult that is for us. As
caregivers we are always second guessing the decisions we have made and wonder if anything could have been done differently.
The only thing we can do to keep our own sanity is to know that we are providing the best care possible while our loved one
is alive. Believe me, this is much easier said then done.
is a good resource for everyone: Choice In Dying is now Partnership for Caring: America's Voices for the Dying.
I just want to remind everyone again that you need to make
sure you KNOW how your primary care physician feels about choices in dying. Kelly's primary care physician
for years knew Kelly's desires about not having a feeding tube. Kelly's Living Will and DNA were in her medical records with
the doctor's knowledge. But, the first time she got pneumonia and was hospitalized, this doctor scheduled surgery for the
placement of a feeding tube without consulting either one of us! We found out when they came to do pre-op preparation
It was then I learned this doctor did not believe in a patients choice
but felt it was her moral obligation as a physician to take any measure to keep her patient alive. This resulted in
many many months of pain and anguish for me as this doctor kept harassing me by phone, telling me over and over how I was
killing my daughter and how her eventual horrible death by choking would be all MY fault.
This doctor was fired and
complaints filed with my insurance company, my
employers (they were self-insured), the State Board of Health and the AMA.
A longer fight ensued with my insurance company in my insisting THEY find us a doctor in their plan who DID honor a patient's
right in dying since they do not ask any doctor's in their plan what their position is on this. Eventually I got a waiver
from the plan to have the Hospice doctor (an oncologist) become Kelly's primary care doctor.