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, 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.

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 Leal's husband, Dave, was 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.

In some 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.

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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:

"Artificial 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 a while 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  and mother.......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.

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 on Kelly.  

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.