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When to call in Hospice

Ladylacy
Posts: 549
Joined: Apr 2012

My husband's cancer has spread and he has elected not to do anything further.  Surgery is out due to the fact that it has spread and he doesn't want to do anymore chemo since the chemo will be more and harder than what he has done already.   Our oncologists have told us that more chemo won't cure only prolong and could even hasten.  Besides that the surgery would be very hard since it would require removal of his esophagus since the cancer was found at the cervical of his esophagus which is a rare place for cancer and has spread to his right lung.  This was considered a second primary and not related to his laryngeal cancer of which he has been NED since his laryngectomy 2 years ago.

Right now he is feeling pretty good not much pain at all.  Still gets out and goes.  Our doctors have talked to me about calling in hospice and while I'm not against that, I just don't feel it is necessary at this point.  And I also feel that if we call them in now, my husband will just give up right now and I want to give him a chance regarding changing his mind about further chemo.  

Anyone been thru this and when do you need to call in hospice which will be in-home hospice care.

I hate this beast and it is a shame that a cure can't be found after all this time and money spent on research.

 

Sharon

KareGiver
Posts: 292
Joined: Apr 2011

I read your post with emotion...

Please consider palliative care...someone checking in with you.  A step before hospice perhaps?

This was the "goal" in our situation.  My husband passed away 48 hours later.  The doctors knew we were open to hospice when the time was right.  We had to force the issue.  

Please, trust yourself...

debbiejeanne's picture
debbiejeanne
Posts: 2853
Joined: Jan 2010

Shaaron, I'm so sorry to hear this news.  I will continue to pray for you and your husband.  I don't know about hospice so I can't help there, just wanted you to know you're in my thots and prayers.

God bless you,

debbiejeanne

katenorwood
Posts: 1879
Joined: May 2012

Sharon,

I can't say enough good about hospice.  My parents fought this right up and to the end of my Mother's walk with the beast.  They can give you specialized plans....and they will tell you Hospice is not the end.  Alot of times people turn around and no longer need their services.  They are angels, and will help you through all the bumps and bangs in the road.  You don't have to make a decission today on this.  But please do make a call into your local Hospice provider and just talk.  I'll be sending positive thoughts and prayers your way.  We would have been lost without them, and were able to give Mom what she needed.  Hugs sent !   Katie

donfoo's picture
donfoo
Posts: 1400
Joined: Dec 2012

Please read this and all of it. I believe it will give you, your husband, and loved ones strength, courage, and deep insight on the journey you are beginning. I found it riveting and fascinating and fixated on it front to end Brilliant!

http://entropyandlight.blogspot.com/

 

Don 

Personal blog - Please join

http:beadown.cognacom.com

 

Ladylacy
Posts: 549
Joined: Apr 2012

I read the site you posted and want to thank you.  Everyone should take the time to read it.  It makes a beautiful read and the song was really beautiful.

Also I just want to say that I know about hospice.  I had them for my mother and they were wonderful.  I just don't want to call them in too early because I feel that my husband will just give up and right now, he isn't ready and neither am I.  As long as he is able to do what he wants too, I'm going to do my best to keep it that way.

 

Sharon

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Sharon,

I have wanted to respond to you all day, but I can't while working.. I am so glad that you figured out what it is that you need to do for you and your husband, and family.  I think you'll know instinctively when it is that you need their help.

And I want you to know that you are in my thoughts and prayers.

A friend of mine was once given 3 weeks to live, they did surgery, and they said, well there's 0% chance she'd be alive in 12 months. Three and half years later, a trip around the world and many more holidays with her family, she finally said, ok I am tired, and she was gone. My dad they gave 3 months, and 17 months later he passed. What I am trying to say, is everyone writes their own story. I hope that you and your husband are able to enjoy some very good times together.

Kari

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

I believe you (the patient) has agreed to no more treatments regardless of cause. So even if the patient gets an unrelated infection or fracture from a fall, there will be no treatment. This is a correct option at some point ---- but  only when death is very near and quality of life has all but slipped away. I would use hospice only in the last days, the very last days. Rick.

katenorwood
Posts: 1879
Joined: May 2012

Rick,

I wanted to comment on your post.  I don't know about other states just mine.  My Mom did not have a DNR on her when they could not do anymore tx's for her cancer, and in hospice care at home.  In fact she was hospitalized several times for issues other than her dx.  So hospice doesn't mean no more care period.  (at least in our experience)  And I agree with you, and hope we never have to face this until the very end of our walk in life.  Positives sent Rick !   Katie

donfoo's picture
donfoo
Posts: 1400
Joined: Dec 2012

you really don't control when hospice actually provides service. You "apply" and then they evaluate each case individually and make a determination what the options are. It may be they say call back when x, y z thresholds have been crossed or a,b,c condition has been observed, etc. If you are fairly healthy and just choose to not continue with pallative treatment then I would not be surprised if they do not offer their services upon initial contact.

don

katenorwood
Posts: 1879
Joined: May 2012

Don,

In our state of Mn., for the services a doctor actually has to fill out a request at the families request.  And yes there is a paper load to do.  That's why I always tell families the first place to start is with their local hospice as they can and will walk you through everything.  This isn't right for everyone, as the information is lenghthy and hard to face.  Families know when it's time to call the help in.  After my Mother's passing, I so wanted to go into some form of hospice to help.  And then I was hit by this demon.  If God wills it, and I get stronger I still may offer my services for respite care to help out.  I will continue to say, hospice workers are angels and needed so desperately !    Katie 

donfoo's picture
donfoo
Posts: 1400
Joined: Dec 2012

Hi Katie,

My Mom had Alzheimer's and passed last September. She was in a loving and caring small care home, specializing in Japanese old folks. Hospice got involved at the very end, I think about a month or so. Nori who runs the facility advised my Dad calling hospice is something he should consider even though she was not in pain, she was just failing faster and had achieved the state and condition that he knew would get them actively involved. I live out of town so my sister and Dad did the detail stuff but I know they did what they did as I reviewed the paperwork, and we received hospice for her. In her case, there were no pain meds, actually they did not do too much in terms of medical assistance but when she passed we called hospice and a minister was sent who also handles the admin stuff like helping call in the funeral home, getting the proper paperwork for the death certificate and such other things. It was nice having them there to help as surely we were in a different mental place. She passed SO peacefully all on her own. We were there which was a priviledge as Nori said most familiies are not there so we feel blessed. 

He knew the signs and advisesd us as time got close and the breathing pace picks up and gets shallow and the facial things so we knew time was near. I told my Dad and sister I am staying round the clock. We were all there in the afternoon. I have only good thoughts about her last hours on Earth and know her spirit is with God.

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