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How do you decide when you are ready for hospice?

Iowahawkfans
Posts: 12
Joined: Oct 2011

Hello everybody - I have only posted a few times as I just found this board. We found out this week that mom's oncologist is recommending she go to hospice. He has already made the referral but mom doesn't feel like she is ready for hospice. How do you know when you are ready? Hospice came in for a consult and they told her it was strictly up to her. I don't think the oncologist is going to do anymore for mom and now I think it is all about managing her pain. What are your thoughts? Have any of you had to go through this?

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

First, have you explored all avenues for treatment for your Mom?
I'd like to share this story about my Mom.

My Mom had suffered some broken bones in May 2010. It hospitalized her for a few weeks then she went to rehab for 2-4 months. Meanwhile, her kidneys were under a lot of stress and she was on the verge of needing dialysis. At 91, she really had no desire to do that and no one faulted her. She has lived a heathly life and was mobile up until her fall. Her doctor knew of her decission to forego dialysis and said to us that her kidneys may not last too much longer and we started to prepare for hospice. We met with someone from the hospice center to talk things over. The plan was to get Mom back home (she was living on her own in the house we all were raised in for 55 years) and have an aide to help during the day and myself, my sister, or my brother would stay at night to take up the slack. She got back home in late Sept but her doctor (who we all like very much) said hat she possibly might not make it to Thanksgiving. We were planning on having the hospice care at home when the time came.

We had to watch her diet as some foods were not he best or ailing kidneys so we did just that. We had a fantastic Thanksgiving. Then we had a Wonderful Christmas followed by a lively St. Patricks Day, then Easter, then Fourth of July, then her 92nd Birthday, and now we are ready for Thanksgiving again.

All the time we were watching her diet, she did her exercises, went to an acupuncturist weekly, and we spent as much time with her as we could. Her spirits were always good which we believe helped her. Her creatin levels got back to the safe range and her kidneys are OK. Not great but good and here is no need for dialysis. She can walk with a walker and a spotter just in case.

I bring all of this up because we all wanted to do what was the BEST for Mom. Even now, we have a Do Not Resuscitate order over her bed in case something happens. I believe that it very often boils down to quality of life issues. Most of the time, I'd like to think that we know when that time is but sometimes we don't. My Mom did NOT want to hear the "H" word as it was soon called so we didn't say that. At the time that we first talked about that she understood and she didn't want to be clinging on to life but not living. Sometimes people act (or react) because of their own fears about dying and their fear of losing a loved one. It's certainly normal but do we act in our loved ones best interest or in ours?

I do not know if I helped you with your question, I may have raised more questions than I answered.
When it comes down to it, I think you just know when it's time.
-phil

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Phil,
Enjoy Christmas
Hugs,
Pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

You can only make the best choice you can.
Hugs,
Pete

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I always thought that hospice was only for those last moments, and nothing much was done.

True, to be 'eligible' for hospice, a person can not be doing any treatment. It IS, as your mom's doctor said, much about pain management, but more global is patient comfort and family (yes, FAMILY) support. They step in and release the family from the day-to-day care, but only do as little or as much as needed, considering the family's requests, as well.

The other great thing about hospice is the emotional support they offer to the family. My mom contracted pneumonia, and then in the hospital had a stroke that left her fairly non responsive. She still responded on occasion, but mostly was bedridden. After PT stopped doing anything, hospice was arranged, and they became the medical support team for my mom, and an emotional support for my sister, who was there. They followed her to a board and care and visited, not only for meds and clinical care, but to act as watchdog that the facility was treating her well.

What you might do is now, shop around for a hospice team that works well with you and mom. Set it up for them to only administer any drugs and clinical stuff as a sort of 'home doctor visit'. As mom needs increase, then it's only a matter of calling hospice and increasing their time, instead of a mad scramble to find someone.

Or, just do interviews, tell them you are still gathering second opinions for your mom, and have them just waiting in the wings. MUCH less to do, then, when she (and you all) does need help.

IMHO. 'Been there/done that'

Hugs, Kathi

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

Death is a reality whether it's accepted or not by some. It's also a VERY personal subject to most as it should be.
Kathi, I think you brought up so much about what Hospice is about. It's not about giving up, it's about trying to make your loved one comfortable while dealing with the inevitable.
You bring up so many great points Kathi that unless you're dealing with this, many wouldn't even consider the value of the helpful role hospice provides. They do help the family out by offering support while the family is left free to focus on their loved ones.

It took a lot of courage Iowahawkfans to bring this topic to the board. It's been raised before and gets the usual opinions on what you should, or should not do. I really do believe that Hospice offers something that is greatly needed in his age of being able to prevent people from passing away naturally and peacefully. No one wants to see their loved ones pass away, but I don't think that anyone wants to see them suffer either.

Steve Jobs last words were reported by his sister to be "Oh wow, oh wow, oh wow".
Not frightening at all to me.
Peace
-p

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Yes, I was fairly uninformed myself about hospice until I met first these 2 incredible people, and then saw a team in action with my mom and sister. I had already made my peace with mom, and so for me it was more a release from the increasing clinical caregiving I had been struggling to do for the last 3 years of mom's life. She was a 2 time cancer survivor, but with both, she 'recovered' to live on.

I picture the same experience when I breathe my last breath...I am thinking oh wow oh wow!!!

Hugs, Kathi

Iowahawkfans
Posts: 12
Joined: Oct 2011

I appreciate your support! I needed to ask the question and wasn't sure what response I would receive. I figured it would be a tough question for many people. I am getting my mom information on all her options and letting her make the informed decision. I will support that for her with our family and will continue to pray for her comfort and and peace whatever form that my take.

Thank you all who have offered your help and advice. It truly helps to talk about this with others who understands the disease and know what is at stake. I truly appreciate it more than you know.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"....mom doesn't feel like she is ready for hospice.
How do you know when you are ready? "

You... or Mom?

Mom will let you know when she's ready to quit life. If you
offer help prior to that, it will be an indication to her, that you
are more ready than her.

Is that really the message you want to convey?

Mom has a an enormous amount of options, besides the ones
that mainstream medicine has offered her.

If you want to be of help, why not learn as much as you can
about all the alternatives available, and then help Mom figure
out what she'd like to try?

"It's not over, 'till it's over".

Personally, I do not want anyone deciding when I should call it quits.

Best wishes and health to you and yours,

John

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

I'm probably going to be ready for hospice when my wife wants me out of the house...

As in most things, that decision will probably not be up to me!

(just a little dark humor folks, nothing to see here, you can disperse now)

Iowahawkfans
Posts: 12
Joined: Oct 2011

We have been told by two doctors now that she is not a candidate for hipec/cytoreductive surgery. She is too weak for more chemo and on thursday when I was getting her up she was literally crying because she was in so much pain and could barely walk. She has carcinomatosis from colon cancer and this has been her third primary cancer in the last 15 months. I want my mom to live but only if she can handle the pain of her disease. I had the doctor up her pain meds but it just rips my heart out to see her like this. I am not advocating for hospice but I wonder if they would be able to help more with her pain management than what we are currently receiving. Do you know of anyone who has survived carcinomatosis from colon cancer? All the research I have done has been pretty grim on her progression. She is only 71 and she is a fighter in spirit, it just seems as if her body is giving out on her.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"I wish she did have more options "
".....Do you know of anyone who has survived carcinomatosis....."

I wish I could be of more help, but I "don't do" western medicine.
I have little -personal- experience with the drugs and chemicals that
are used to fight cancer, and only know what I see, read, and hear
from those that have gone the Full Monty with western meds...

There are other routes to take however, if you do not insist
on sticking to a mainstream route that is/has obviously failed
you, your mom, or anyone you know.

I chose Traditional Chinese Medicine for my battles. I won't
make claims based on my "good luck" of remaining alive,
I'll let the western medical physicians make those claims for
their modality based on the "success stories" they have.

TCM can do some pretty seemingly miraculous things, in the
hands of a experienced practitioner; I do have first hand accounts
for that! I am never lacking amazement for what can be accomplished
with a science so basic in design.

That said..... Here are some links to keep you occupied:

Chinese medicine for the treatment of carcinomatosis and cancerometastasis

Actually, rather than list all the websites that deal with this,
it's easier to just let you poke around by giving you the
link to Google: Traditional Chinese Medicine carcinomatosis

I hate to think of anyone in so much pain, that they would prefer
to give up life itself.

There is absolutely no reason to take medications that can cause
pain, with the notion that enduring the pain and sickness from the
medication will "make you better".

I feel sick seeing so many individuals getting worse instead of
better due to the medications, and being told to continue those
medications, in spite of the impending doom that they see is slowly
bringing upon them.

There are other ways to deal with all this..... Healthy ways;
ways that make one feel like living, instead of dying.

Give it all a good read, ask questions, give it all some serious
thought. Hospice should be the last door to go through.

If it has to be, it has to be, but "mom" should have that last decision,
and it should be decided with her having sound mind and spirit.

Good luck, and (I hope) better health.

John

Iowahawkfans
Posts: 12
Joined: Oct 2011

I will certainly check out those links. I am willing to look at any alternatives that can help her. It is funny how going through something like this can really turn your world up side down and inside out. I assume these doctors know best and have done my own research to ask better questions or know when to get second opinions but I have to admit when you see your loved one suffer to the extent my mom has, I have wondered if it is worth it. My mom is my best friend outside my husband. I hate the thought of losing her to this disease. I want to scream at the doctors to fix her!!! She gets weaker all the time but her mind and will are so strong!!! She is just an amazing woman. I can only hope we can either relieve her pain and symptoms or find something that will cure her.

Again, thanks for the links and advice. I am going to check them out now.

laurettas
Posts: 372
Joined: May 2011

Do you suppose that your mom might be more receptive to the idea of a home health care nurse rather than terming it hospice? Sometimes the way we phrase things can make a lot of difference. Hospice has the connotation for many as being those that come to care for us when we are at death's door. Maybe the idea of a nurse that comes and helps with medications, etc. would be a comforting idea rather than a frightening one for your mom.

High Desert
Posts: 4
Joined: Aug 2011

My brother who had a short battle with lung cancer decided and told us to call 2 weeks before he died. He wanted to be at home and his sisters by his side. Hospice provided a hospital bed and other equipment came every day to bathe him and change bed if needed. Also managed his pain and delivered the meds to the house. They were great letting us know we were doing a good job of taking care of him,which eased our minds. He was realitively pain free and coherent up until the last day when the pain increased to where they had to up the morphine to where he was completely sleeping the last 12 hours. They were so much help and I wish we had called them sooner. By the way the hospice nurse said she had patients on hospice for 2 years. Wishing you the best through this very hard part of the journey for the patient as well as the caretakers

Lovekitties's picture
Lovekitties
Posts: 3317
Joined: Jan 2010

In home Hospice care is available to patients who have been deemed to have 6 months or less life expectancy and who are not/will not be receiving further treatment for their condition.

While the patient has the ultimate decision regarding Hospice care, it is important that it be discussed with family/potential care givers. In home Hospice care is not a 24 hour a day service, but more of a visiting nurse and care giving aid service. Therefore it is important to determine who will be supporting the patient's needs when those folks are not there.

If necessary, there is full time Hospice care available at some nursing homes, hospitals and some independent Hospice facilities. You have to check in your area for what is available. For additional information see http://hospicenet.org/html/faq.html

If you Mom's situation fits these basics, then Hospice could certainly help.

Marie who loves kitties

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

that your family is going through such a difficult time. I sometimes think that it's even harder for the caregiver than it is for those of us with cancer. Watching a person you love suffer and not being able to help is terrible. My experience with hospice was when my sister died from cancer a few years back. She had in-home hospice care and she was able to receive quite a bit more pain medication than what she was receiving prior to entering hospice. The funny thing about hospice is that recent studies have shown that people who enter hospice actually live longer on average than those who don't. I think the relief of pain and the compassionate care they receive really makes a difference. But it really is a decision that has to be made by the person who is ill. I personally wish that my sister would have gone into hospice sooner, but she was unable to face making that decision until close to the end. Now that I may be facing similar decisions in the not-too-distant future, I can understand why taking that step was so hard for her. It's not easy accepting that the end of the journey is in sight. I'll be thinking of you and your mom, and hoping that she will experience some peace and release from pain. Ann

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