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When do you know it's time for hospice care?

Goldie1's picture
Goldie1
Posts: 251
Joined: Sep 2011

My husband Pat is not doing well.  2nd month of Stivarga (regorafenib) and 2 trips to the ER within that time frame. He is in pain (stomach, groin, hips, back) so once again he is on strong pain meds, Fentanyl patches & Oxycodone.  No appetite and losing a lot of weight.  He is very depressed and no matter what I do, it's seems that he has given up on the fight.  He has fought hard these last 2 and a half years.  Do I let go and just make him comfortable as possible?  Do I ask his oncologist about hospice?  I feel at a total loss on what the right thing is to do for him at this point.  31 years of marriage and never felt this helpless in all that time.

Ellen

UncleBuddy
Posts: 632
Joined: Aug 2013

I am so sorry that you're both going through this. I wish I could offer you some advice on this this, but all I can offer is a virtual hug. You would think the doctors would tell you whether it's time for hospice or not. I would have no idea. My brother and I will be talking to his doctor this week because he wants to discuss stopping chemo, or at least lowering the dosage. He has been in and out of the hospital 3 times in the past month and we almost lost him. He has been so sick. Now that he has been off the chemo and all his issues are under control, he is starting to see a quality of life. He is stage 4 with mets to the lungs and liver. We thought the chemo was helping, but it was making other problems, so we'l have to figure out what is his next step. I suggest you talk to his oncologist and see if it's time. {{HUGS}}

Lin

lilacbrroller's picture
lilacbrroller
Posts: 285
Joined: Jun 2012

Hi, Ellen. I am a stage IV SOL patient (my name for multiple mets in difficult places, as opposed to Stage IV EZ - easily resectable tumors) and grapple with this all the time.

What does your husband want to do? Has he said anything? It sort of, ahem, is his decision, but I gather he's majorly in denial, or at least isn't communicating his wishes? I totally get the "head in the sand" bit, and the wanting not to deal with it. Yup. Very typical. It's tough to go in a short time from a healthy active person to an invalid. I have spurts of energy and then I'm back on the couch, mainly due to chemo side effecs and extreme fatigue.  Maybe he's not telling you how he feels and what he wants, but I'm sure he's thinking about it.  All the time.  I think somehow you have to get him to open up about what he wants. 

I've initiated end of life conversations with my family and my mother often starts crying.  These conversations are not easy for all of us.  I hated the afteraffects of oxaliplatin, and really don't want it again - I mentioned this to a close friend and she was upset at losing me if I didn't try it again.  Dang! Quality of life is important to me so in the back of my mind, I've thought about what to do when I hit that critical point where it's 100% clear that I'm not going to get better, and I'm basically going to be a "brain in a jar" (ie mentally there but very little physical capabilities, and a life of just chemo and painkillers and TV reruns) until I die.  I want to live as long as possible, but at some point, when it's no longer fun, I'm going to surrender to the inevitable and just let nature run it's course. Anyway, thank goodness, I am not there today (knock wood of course)

I hope you and your husband can have a good chat soon, maybe with a counselor or with your onc, and he can make his wishes known and y'all can go from there.  It must be more difficult when a patient is closely connected with more people. 

good luck and I feel for you. 

Karin

annalexandria's picture
annalexandria
Posts: 2254
Joined: Oct 2011

It's such a hard road to walk.  What does his doctor have to say about the situation?  Does he/she feel that the Stirvaga is likely to help?  It may be time to ask some of the hard questions...not only whether or not the chemo is likely to help, but what does that mean exactly?  In my experience, I've found that what an oncologist may consider a good result may not be what the rest of us laypeople would consider all that great.  In many cases, the improvement from chemo is a matter of weeks, and that comes at a huge price.

And what does Pat say about this?  I think a lot of the decision has to rest with him.  My sister, who was dx'ed with cancer at age 43, made the choice to keep doing chemo until almost the end of her life, a year later, even though it clearly wasn't doing anything.  She and her husband didn't have hospice come in until the last week or so before she died.  That was her choice, and although I don't think it's what I want for myself, I have to respect that she did things the way she wanted to.

One last thought...imo, palliative care ought to be involved, if at all possible.  Palliative care is not hospice, and is not dependant on being considered terminal.  It involves the patient being made as comfortable as possible.  It seems like that would be helpful for your husband at this point, if it's available.

I'll be keeping you both in my thoughts, sending hopes for strength your way.

AA

Lovekitties's picture
Lovekitties
Posts: 2942
Joined: Jan 2010

Your husband's onc should be able to help you and him to determine when to call in hospice.

A referal from his doctor is required, to confirm that no further treatment is being planned and prognisis.

I know how very difficult this is for you, as I went thru it with my sister.  In her case it became evident when we would no longer be able to meet her physical needs at home without help.  I called her doc, they called hospice and within a few hours they were with us and had home health care furniture and supplies delivered.  I am also glad that I called them while she was still able to understand the process and sign herself for the services.  She was assurred by them and the family that if she improved, hospice would go away and she could continue treatment.  It was not to be, but it gave her some measure of comfort.

In the last month of her life, my sister was on fentanl patches and morphine due to pain from bone mets.  She was also on anti-anxiety meds and depression meds.

The choice to continue or stop treatment has to be the patient's as long as they are mentally capable of decision making.  I know that I disagreed with my sister's choices at times, but it was her life to live as she wanted.  We as caregivers and loved ones cannot hold on to them for our own needs.

My experience with hospice before and after my sister's death was excellent.  They offer services to the family as well as the patient.

May the path become clearer and may you both find some peace in the time left.

Marie who loves kitties

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

I have been where you are and I understand so well the feelings of helplessness and not knowing what is the right thing to do.

One of the hardest things about being a caregiver is that it is ultimately not our choice. Your husband will make the decision as to how much more treatment he wishes to have.  If treatment is ineffective and is making his situation worse ... I have to be honest, I do not understand why one must continue ... he is not giving up any fight ... maybe, he is facing a reality that he may not survive his cancer. 

Having said that, perhaps the recent challenges of the ER and pain have made him feel defeated. Have testings shown that the current treatments are having any positive effect to hold back his cancer? I think this is an important consideration as to how your family goes forward.

Does the hospital cancer center where your husband is being treated have a palliative care department? I ask this because sometimes they can be a transition to hospice or they can help focus on relieving the burdens of treatment that are making him feel so badly.  Their only focus is on pain relief.

If there is not a palliative care unit ... is there a social worker that is associated with the oncology practice that you and your husband can speak to? Sometimes, a discussion can be arranged to coincide with a regular oncology appointment.

Home hospice often gets equated to imminent death but this is only because folks usually wait too long to seek this comfort care. My experience with home hospice was wonderful.  My husband was treated with respect, dignity, and it provided me needed support as well.

This is a very challenging time for you and your husband.  I am so sorry you both have to go through this.  I do think you need to try to explore whether your husband is expected to survive his cancer and if not ... perhaps acceptance of that fact and comfort measures are the most loving thing.

Peace and strength to you and yours. ~ Cynthia

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