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Topic Dealing with Doctor not wanting Hospice for your loved one Go to previous topic Go to next topic Go to higher level

By chacha53 On 2009.08.24 00:52
I have not posted for sometime now concerning my loving husband w/PD. In earlier post I was struggling with feeding tube or not and picc line and etc. Terry's Dr talked him in to a feeding tube and he could not tolerate the feeding, so the feeding tube was removed and I continued to feed him and he got pneumonia several times because of aspiration, so a J tube was placed, after placement the adjusting the feeding began and soon we discovered that Terry could not tolerate the feedings above 35 , not enough nutriention, Terry has lost so much weight, in Jan 09 I think he weight around 150, now maybe 95, he is starving to death, I can't hardly stand the thoughts of this, Terry's Dr does not want him to go to Hospice ( why I don't know) except he says he can't be in charge , well he wants to put a TPN line in, for Terry to receive nutrients. I have took it upon myself to contact hospice, I have decided not to put the TPN line in, is this so wrong of me. Believe me I don't want to lose my precious husband, but I don't want him to lay and suffer as he is. I have discussed this with our daughter and she agrees with me. How do you PD patients feel about my decision, help me please understand. I am feeling so guilty right now!

By lurkingforacure On 2009.08.24 07:06
I am with you, and cannot believe the doctor. Your post brought tears to my eyes as I thought of how you and your husband must be suffering. Any doctor with half a brain should see this. Have you asked the doctor specifically why Hospice should not be involved in this terrible situation?

You are doing a great job under tremendously difficult circumstances. Take comfort and strength in that and continue doing what you believe is best. You will never have regret for that. And your husband is lucky to have you.

By susger8 On 2009.08.24 08:15
I feel you are doing the right thing, and it's what I would do for my father if (when) he reaches that stage.

If I'm understanding you, the current doctor doesn't want to involve hospice because then he won't be in charge. I think that might be a good thing, to cut him out, because he is working in a way that counters what your family wants.

The hospice people we worked with when my mother was dying were just wonderful.

By sooboo On 2009.08.24 13:55
I'm truly sorry to hear of this very difficult time. My mom and I had a doctor that also would not start hospice even though my mom could not really eat anymore. I found a new doctor, one that made housecalls and started hospice care. Apparently there is a network of doctors that visit board and care facilities and nursing homes. Maybe call your closest facility and get a name?

I wanted to add that I think you are doing the right thing. You have been there through his illness and you know what to do. It sucks that the decision has to be made by you and not backed up by the doctor. It makes this tough time tougher.

By WitsEnd On 2009.08.24 14:51
I'm not a PD patient, but understand the agony of your decision. You did the right thing. If you are not certain of that, ask for a second opinion.

Remember it is not the doctor who will lie awake at night wondering if he did the right thing. He won't have to live with regrets later.

Certain words are hot buttons that evoke emotion. "Starving" is one of them. You aren't starving anyone. He is unable to eat. He will not be able to eat next year or the year after that. There is no fix here. Even with "artificial" feeding they don't get enough nutrients to survive long term with any kind of feeding tube.

Seeing him waste away is one of the worst things to go through. It's the disease and it's horrible.

God bless and hang in there.

By annwood On 2009.08.24 14:56
I feel that you are definitely doing the right thing and for all the reasons that you listed - I went through it myself with my husband and have never regretted the decision.

It sounds to me like you have an egomaniac for a physician and one that is procedure happy to boot. You do not need this man. Ask him if he has a cure that the rest of us don't know about or just where does he think he is going with this. He would still be very much in charge with Hospice - they would need to take medication orders from him. Ask this man if the case can be referred to the Ethics Committee of the hospital. That is what got my husband's neurologist off my back. Does your husband have an Internist that would refer him? Hospice will help you and make your husband comfortable.

This is a very hard time for you - at this point we have to face that the end is near and we have spent so much time trying to beat it back. Stay strong - we are here for you.

By bandido1 On 2009.08.24 21:46
chacha53: sorry I'm late getting back to you. I have had a couple of tough days. At my age that is to be expected.

To get a full picture of my attitude you should search my threads, but I'll make it short and simple for you. Don't feel guilty! I have instructed my spouse, doctors, care providers, etc. both verbally and execution of the DNR, to avoid any life sustaining procedures. Bob C

By Emma On 2009.08.25 04:39
I think you're doing the right thing, as hard as it is it's a loving decision in my opinion. Years ago when my husband and I did our POA's and advance directives for health care we both specified no feeding tubes or extraodinary measures. If the time ever comes it will make my decision so much easier.

I suppose that guilt is inevitable but in many ways your decision is a gift. Be at peace.

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