CSN Login
Members Online: 14

When to start hospice

ceb1's picture
ceb1
Posts: 7
Joined: Jun 2013

I logged on to discuss this and saw Christine's post and realized so many of us are going through such pain. I wish you and Mike peace Christine and will keep you in my thoughts.

We are in a similar situation I believe. My husband (stage IV, 2 yrs in treatment) had emergency surgery 11 days ago due to a perforated bowel. This was caused by a stent that was placed about a month ago to relieve a constriction caused by a tumor pushing on his colon. The surgery was very hard on him and he is still in the hospital. He is still on an NG tube and shows no signs of turning the corner. He is confused and can't understand what is going on. He has been off chemo (his 4th regimen) for almost a month due to these complications. The "pain" team (we are at Ohio State University Medical Center and The James) discussed with me yesterday the possibility that he may not get well enough to have chemo again and that we should be starting to think about how this may go. I really struggle with the thought of accepting or knowing IF this is the downward spiral. Maybe he will start to feel better, maybe he will come home and get strong. I could face it better if I knew what were happening but everyday is like we are in a holding pattern waiting to see if he shows signs of getting better. In the medical condition he is in now, I could not care for him at home so I don't know if that means he will stay in the hospital or move to hospice. Does anyone have experience with someone moving to hospice in such a poor medical condition? I feel that hospice would be more peaceful than a step down (critial care) ward, but I am not sure hospice takes patients with such medical needs. I will ask the pain team all of these questions Monday when we meet again, but wondered if others had any insight.

Strength to you all

Christine

CarolandJoe
Posts: 23
Joined: Feb 2013

It is my understanding that the main goal of hospice is to help the patient be as comfortable as possible when further treatment is not possible. I am so sorry for what you are going through and wish you the strength you need to persevere.  I spent the morning with a dear friend who lost her husband to lung cancer the end of May.  We were talking about how chemo treatments ravage the body so much.  It seems like every time my husband has a hospitalization (which is related to the rigors of chemo) he has a new health problem.  The latest is that his heart has been damaged.  This is all so confusing and frustrating.  How do we know whether the "treatment" is lengthening life or shortening it with all of the side effects to the chemo drugs? 

CarolandJoe
Posts: 23
Joined: Feb 2013

It is my understanding that the main goal of hospice is to help the patient be as comfortable as possible when further treatment is not possible. I am so sorry for what you are going through and wish you the strength you need to persevere.  I spent the morning with a dear friend who lost her husband to lung cancer the end of May.  We were talking about how chemo treatments ravage the body so much.  It seems like every time my husband has a hospitalization (which is related to the rigors of chemo) he has a new health problem.  The latest is that his heart has been damaged.  This is all so confusing and frustrating.  How do we know whether the "treatment" is lengthening life or shortening it with all of the side effects to the chemo drugs? 

CarolandJoe
Posts: 23
Joined: Feb 2013

It is my understanding that the main goal of hospice is to help the patient be as comfortable as possible when further treatment is not possible. I am so sorry for what you are going through and wish you the strength you need to persevere.  I spent the morning with a dear friend who lost her husband to lung cancer the end of May.  We were talking about how chemo treatments ravage the body so much.  It seems like every time my husband has a hospitalization (which is related to the rigors of chemo) he has a new health problem.  The latest is that his heart has been damaged.  This is all so confusing and frustrating.  How do we know whether the "treatment" is lengthening life or shortening it with all of the side effects to the chemo drugs? 

CarolandJoe
Posts: 23
Joined: Feb 2013

It is my understanding that the main goal of hospice is to help the patient be as comfortable as possible when further treatment is not possible. I am so sorry for what you are going through and wish you the strength you need to persevere.  I spent the morning with a dear friend who lost her husband to lung cancer the end of May.  We were talking about how chemo treatments ravage the body so much.  It seems like every time my husband has a hospitalization (which is related to the rigors of chemo) he has a new health problem.  The latest is that his heart has been damaged.  This is all so confusing and frustrating.  How do we know whether the "treatment" is lengthening life or shortening it with all of the side effects to the chemo drugs? 

CarolandJoe
Posts: 23
Joined: Feb 2013

It is my understanding that the main goal of hospice is to help the patient be as comfortable as possible when further treatment is not possible. I am so sorry for what you are going through and wish you the strength you need to persevere.  I spent the morning with a dear friend who lost her husband to lung cancer the end of May.  We were talking about how chemo treatments ravage the body so much.  It seems like every time my husband has a hospitalization (which is related to the rigors of chemo) he has a new health problem.  The latest is that his heart has been damaged.  This is all so confusing and frustrating.  How do we know whether the "treatment" is lengthening life or shortening it with all of the side effects to the chemo drugs? 

Ladylacy
Posts: 411
Joined: Apr 2012

First off I am so sorry to hear about your husband.  But your doctor will be able to tell you about hospice and advise you.  Also is your husband ready to call hospice in, can he make that decision?  My husband declined any further treatment when he had a reoccurrence of his 2nd primary at the cervical of his esophagus and spread to his right lung.  Chemo was the only thing offered after undergoing 70 rounds of radiation and 10 chemo treatments.  His 1st primary was laryngeal cancer 3 years ago for which he had a laryngectomy 2 years ago.  Then they found a second primary a year ago.  One doctor felt we should go ahead and call in hospice but we didn't because we didn't feel it was needed at that time.  My husband told our primary doctor that he felt if we called hospice in now he would just give up.  To date he is doing better than anyone expected and it has been 6 months.  When he goes downhill, we will have the doctor set up hospice for us.

Wishing you the best -- Sharon

 

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

I sent you a personal message.

Christine

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

I am so sorry to hear about your husband. My heart and prayers are with you both. Hospice is a choice and if you are his health care proxy and your doctors are in agreement, then you can go to hospice. It sounds like his pain team is leaning towards hospice from your post. If that is the case, then the social worker at your hospital can give you the number to call hospice (we are through Visiting Nurse Services) and they can answer all your questions. If the treatment is going to do more harm then it may be the time to call Hospice and set it up. They do care for people regardless of their condition once it is determined that you stop all treatments and let nature take its course. Once on hospice if you can not care for him at home, they have homes in your area that care for those on hospice that is not in a hospital setting and your husband can go there and if he improves, he can always come home. My best suggestion is it costs nothing to speak to someone from hospice who can talk with you in person and provide you all the information you need about hospice. I always say knowledge is power and the more you know the more you and your family can decide what is the best way to go. So either talk to the hospital social worker or call Visiting Nurse Services in your area and ask about hospice. It really can't hurt at this point and you may find, like I did, it was the right thing to do for Mike. If anything, you will have a better understanding of what hospice is all about and what they can do.

Christine

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network