Article on Hospice by Atul Gawande

Thank you all for the advice and well wishes. We do have a living will and Durable Power of Attorney naming me as the decision maker. I get so involved trying to take care of Judy that I forget what all we have done. Thanks for reminding me. I will talk with Judy’s nurse and Judy about the importance of staying on top of these meds. Right now she is coming out once a week to check on things and that seems to be working pretty well. The Nurse said she will come more often as the need arises, I just hope I recognize the need before it becomes unbearable for Judy. With the help of our three girls I feel pretty confident we will take good care of Judy. Thank you again for everything. Tommy

Tommy do not fear, you will be in charge. Suggestion: You should ask Hospice to explain to Judy why pain meds must be taken on a timely basis. If the pain is allowed to get out of hand by not being on a regiment, it is harder to get the pain under control. This happened to Teddy. Once he understood their explanation he was so much better. OOPS second suggestion: Have you and Judy sat down and talked frankly about who is going to make decisions down the road? I strongly suggest it. Let her know she can trust you with the guidance of Hospice to make her decisions and maybe when she says she does, that will give you more confidence about it all. Part of our role as care giver and advocate is to step up and make the decisions along with our loved one for as long as we can then we can quietly slip into the solo decision maker when needed. Best wishes.

I just finished reading this article and it made me feel better about our decision to bring Hospice on board. It also makes me realize how tough my Judy is. Watching the progression of this disease from the beginning, April 15 2009, to where Judy is now, I have to wonder if we should have brought Hospice in sooner. Her quality of life has certainly diminished, not to the point where she can’t do things for her self, but the constant pain and being just plain sick all the time would drive me crazy. From the beginning all decisions pertaining to treatment has been made by Judy. Now that Hospice is coming to the house all decisions are still made by Judy. I appreciate that is how it goes, but sometimes I think she lets her pain go to far before she will take a pain pill. I wish there was someone to tell her a schedule to follow so she wouldn’t have any pain at all. There are instructions on all the medication but no set schedule. Maybe I’m just a big baby because I DON”T like pain. Surely when it gets too bad she will take meds regularly. So far that is the only thing I can complain about. Judy is still in control of things and I’m worried that when the time comes that she can’t make these decisions, who will? I hope they let me, or listen to me. I am scared if they don’t hear it from Judy they will not do anything. Thanks for listening.

Betsy,

Thanks for posting that article, it made an interesting read.

Back in April when my Dad was diagnosed he was told quiet bluntly whilst in his own, you have terminal cancer and 2-3 months to live. A week later after being transferred to a Liver specialist hospital we were told that Dad could have Gem/Cis once his bilirubin level was low enough and that they had had a great success with this treatment. To us at the time this meant years not months. A few weeks later a meeting with the Oncologist didn’t go as well as we hoped when he said “this treatment won’t cure you just give you a few more months” something at the time we didn’t want to hear. As a daughter watching your Dads face crumble and fill with fear is something I wouldn’t want my worse enemy to go through. That night I worried that would it be worth the chemo effects for just a few months more, the answer was yes it would as my Dad would still be here with us and even then I was looking for trials or anything else that could prolong my Dads life.

Chemo or any other treatment has never got to become an option, Dads bilirubin has never been at a safe enough level, the tumor blocks the bile duct and the stents are useless, his only relief from the bile is the external drain. This news was given in September, this time by the Clinical Nurse Specialist after Dad had had his external drain, she told us 3-4 months max and Dad would just go more tired and eventually enter a coma. Mom went to pieces and it was the longest journey home. Our hopes had been pinned on Chemo and now they had been dashed.

Dad is in that 4th month now and apart from being more tired he said he feels no different than he did in September. He looks thin, which is so hard to see but he’s still got that sparkle in his eyes. I now wonder whether chemo wasn’t meant to be for a reason, perhaps Dads quality of life would not have been so good and the summer days out together wouldn’t have happened. Dad has refused hospice help at the moment as he wants to keep things as “normal” as possible. The DN come everyweek and his BP etc are all fine, no fluid retention and most importantly no pain, he can still take care of himself and doesn’t need Mom to help him with anything. When the time comes then we will call on home hospice help, and if Mom feels she can’t cope then Dad has agreed to going into Hospice. I know that day will come sooner rather than later but for now we take it day by day.

Charlea – I can only give you my son’s situation with the pain patch (fentanyl). He was given it but was still having a lot of pain. One of the nurses in the hospital at the time said the medicine needs to be absorbed by fat and he was so thin at the time, she didn’t feel it was helping him at all. He did better with the morphine on board where he could push the button and get a dose delivered as needed. I’m not sure if this goes for everyone, but that was his experience. Hope that helps……Nancy

Dear Fightingformom, Hospice will evaluate her and then decide how much pain med she should be on. They are extremely good at this and then they moniter her and when they feel she is nearing the end you can have her moved to their facility. If Mom is in that kind of pain you could have them come now. They work very quickly and before you know it everything is set up. Is she on pain meds now? There is no reason for her to suffer with pain as they will try to make her as comfortable as they can. I know this is a very hard time, I just went through it with my husband, but try to stay strong so this time is not wasted but used to good measure. If after the evaluation they feel she belongs in a facility instead they will also take care of that. Wishing you the best.

Lainy……You and I had plenty of discussions re: the end of life care Teddy received by the Hospice Facility. GI cancers notoritously are difficult to control at the late stage however, patients have to be assured to receive the utmost of pain control and nausea control. If they can’t provide it then patients need to be in a hospital setting. This should have been made clear to you.
I hope for your meeting to take place soon, because you are entitled to some clarity regarding their failings regarding Teddy’s care.
I am fully behind you on this.
Hugs
Marion