Hospice

Hello,

In October of 2010, my Father (age 70) was diagnosed with esophogeal cancer stage 3.  From that point  on I made up my mind I would be his primary caregiver on a full time basis.  My Mother is in a wheel chair and is unable to provide care for him. He did chemo twice and radiation once. I knew this was a treatable but not cureable cancer.  When the oncologist came to a point he could do no more, he sent him to UC Davis for a treatment they do there (PDT). During all his treatments he was a very sick man,  Never did return to his old self or even close.  He was sick ALL the time and in pain.  At this point I knew how to deal with all Dad's needs (pain meds, peg tube feedings, doc appts and so on). This went on for 19 months. So when he developed ascitis and pleural efusion (had to drain around his lungs 5 times) we took him back to his oncologist.  At this point he couldn't swallow anything. Oncologist could see what a sick man he was and said we should call hospice.  

Now all I've heard is how wonderful hospice is......NOT.  I callled them and the nurse came and explained it to us. Very cold, not compassionate straight to the point and how they are all about comfort.  Told him he would no longer have his doctors and he would be under nurses care who then consult their doctors. It basically sounded like by signing up you were at their mercy and ready to die. She must of used the word "hospice" 30 times. At the end of her presentation she could see the confused look on our faces and says "looks like your not quiet there yet" and we would keep in touch.  Well a few days went by and he was getting worst I thought maybe we could at least get some moral support.  Another nurse came out and we signed up with hopes for some help with pain control.  She was a sweetheart.  Well, that eve my Dad went out on his porch with Mom to see his garden (this would be his last time)  Went back into his bedroom and died 36 hrs later.  Well when he was close to passing, we called the hotline and they sent out a nurse (happended to be the first nurse who gave the heartless presentation) to evaluate.  She says, wont be long, he's getting close, won't be more than a few hours. She must have pumped 5-6 syringes of meds while she was there. She says call me when he passes.  HuHHHH?  During all this I had asked for a brochure at least 3 times as I heard it was very imformative.  He passes about 3 hrs later.  We call her she comes about 1/2 hr later.  Very business like.  Needed me to make room for her computer as she has allot of paperwork to do.  She refers to him as "the body", mentioned coroners office many times.  It sounded like a crime scene. Here my Mom just last her bestfriend of 55 years.  He was not "a body" to her.  Although she did give us time alone with him.  Well that was 2 weeks ago. Haven't heard anything from them regarding grieving groups...and I still havent gotten a brochure.  As it was, we would of done better without them.  Has anyone else had this kind of experience with hospice?

Jules

Absolutely not!  Hospice is a very caring, compassionate service....all the nurses I have ever met have been very concerned of the patient and their families.  Hospice is about the living, and giving the transition of life a better quality, with the use of pain relief.  You cannot generalize an organization such as hospice on 1 nurse!  I don't care what service, where there are healthcare providers, whether it be hospitals, labs, medical offices or home health care.....there might be one that does not match up with the personality of the family member of the patient!  Hospice nurses deserve all the respect in nursing one could receive!  Blessings!

I think you got a nurse who shouldn't be in the Hospice area of treatment.  We had hospice for my mother and all that came to the house were wonderful.  In fact the night she passed away, the hospice nurse was at the house.  We were sitting in the family room talking with him and remembering the good times with mother, my sister and I.  He thought she would passed during the night and said to call him and he would come right away.  Well he stayed and stayed and was with us with Mother passed away.  We will always remember exactly how gracious all of the hospice personnel were.  

I realize that not everyone will have the same experience but ours was wonderful.  I have been in many doctors' offices and have had nurses who were rude and uncaring while others went well above what they do.  You can't judge everyone else by one that shouldn't be in a particular field of helping others.

I am going through a similiar experience. The hospice lady is only there for about 15 minutes twice a week then she tries to tell me what is best for my husband, she acts like he is going to die anyway so why make him comfortable and address any other issues? She just irritates the crap out of me. She thinks she knows best and will not even take the nurses suggestions when they try to help with the phlem coming up all the time, instead of something to help dry it up, she gives him an expectorant and makes it worse. I am so frustrated with her and I wish they were not even there!

I am sorry that you are having to go thru this.  But you can always ask that they not send this person to your home.  One of our neighbors had hospice come in with her husband and they were great.   

If you feel she is not helpful, speak up.  You can always cancel them.  But for me when my mother was dying Hospice was great and was for my neighbor.  This is a horrible field to be in and not everyone can do it.  Hospice is for the dying and making the patient and their families comfortable with the process. 

My husband had Hospice in the late stages of battling lung cancer and they were tremendous.  There was one social worker who came out while I was at work and asked my husband if he had made his final arrangements.  He hadn't acknowledged that he was terminal yet and the doctor told me not to bring it up other than to answer any questions he asked.  I called the office and asked them not to send her out anymore.  The nurses were great - especially the one my husband called "Sarge".  She was rough around the edges but my husband adored her.  When she got the call that my husband had passed away, Sarge came immediately and proceeded to clean him up.  He had a coughing spell and aparently ruptured a major artery so blood was everywhere.  She washed all the blood off of him and put clean clothes on him before they came to take him to the funeral home.  She cleaned the bed and floor - all was in order before she would leave.  She treated him with such respect and it meant the world to me.   

The reason doctors are pretty much replaced by Hospice nurses is because the nurses are given the authority to increase pain meds as needed without wasting time trying to track down a doctor (which can be time consuming). 

I would highly recommend anyone calling their boss if any nurse is less than compassionate.  If ever compassion is called for it is when we are losing a loved one.

Diana   

On Jun 02, 2012 4:05 AM julesfith wrote:

Hello,

In October of 2010, my Father (age 70) was diagnosed with esophogeal cancer stage 3.  From that point  on I made up my mind I would be his primary caregiver on a full time basis.  My Mother is in a wheel chair and is unable to provide care for him. He did chemo twice and radiation once. I knew this was a treatable but not cureable cancer.  When the oncologist came to a point he could do no more, he sent him to UC Davis for a treatment they do there (PDT). During all his treatments he was a very sick man,  Never did return to his old self or even close.  He was sick ALL the time and in pain.  At this point I knew how to deal with all Dad's needs (pain meds, peg tube feedings, doc appts and so on). This went on for 19 months. So when he developed ascitis and pleural efusion (had to drain around his lungs 5 times) we took him back to his oncologist.  At this point he couldn't swallow anything. Oncologist could see what a sick man he was and said we should call hospice.  

Now all I've heard is how wonderful hospice is......NOT.  I callled them and the nurse came and explained it to us. Very cold, not compassionate straight to the point and how they are all about comfort.  Told him he would no longer have his doctors and he would be under nurses care who then consult their doctors. It basically sounded like by signing up you were at their mercy and ready to die. She must of used the word "hospice" 30 times. At the end of her presentation she could see the confused look on our faces and says "looks like your not quiet there yet" and we would keep in touch.  Well a few days went by and he was getting worst I thought maybe we could at least get some moral support.  Another nurse came out and we signed up with hopes for some help with pain control.  She was a sweetheart.  Well, that eve my Dad went out on his porch with Mom to see his garden (this would be his last time)  Went back into his bedroom and died 36 hrs later.  Well when he was close to passing, we called the hotline and they sent out a nurse (happended to be the first nurse who gave the heartless presentation) to evaluate.  She says, wont be long, he's getting close, won't be more than a few hours. She must have pumped 5-6 syringes of meds while she was there. She says call me when he passes.  HuHHHH?  During all this I had asked for a brochure at least 3 times as I heard it was very imformative.  He passes about 3 hrs later.  We call her she comes about 1/2 hr later.  Very business like.  Needed me to make room for her computer as she has allot of paperwork to do.  She refers to him as "the body", mentioned coroners office many times.  It sounded like a crime scene. Here my Mom just last her bestfriend of 55 years.  He was not "a body" to her.  Although she did give us time alone with him.  Well that was 2 weeks ago. Haven't heard anything from them regarding grieving groups...and I still havent gotten a brochure.  As it was, we would of done better without them.  Has anyone else had this kind of experience with hospice?

Jules

Grief is not confined to the patients family. Hospice nurses sometimes have a build up of frustration and grief and unless they attend regular counselling will react to death in the same way your nurse has. It is very unusual but it does happen I am very sorry you did not get the support you needed, there are no excuses for less than professional behaviour but this nurse need your prayers to help her cope with her daily exposure to death or to have the courage to abandon the people under her care and seek alternate employment. I am a pancreatic cancer/whip piles survivor and one of very few who came through hospice. I am very sorry for your loss and especially your mothers but please spare a thought for that poor nurse who seems to have one case too many Ian the Aussie (survivor)

In response to "julesfith":

Your experience with Hospice should NOT have been like this! I lost my mother in June and we had Hospice for the last 2 weeks of her life.  I was her primary caregiver and I honestly do not know how I would've coped without them.  The nurses were compassionate, loving, and caring with my mother and me and treated my mother with respect and dignity.  About 2 weeks ago, I received a survey to complete about our experience with Hospice.  Hopefully, you received one, as well, and let them know about this one particular nurse.  If not, then they have supervisors that you can report to.  I understand totally how difficult their job must be, but when they lose the ability to be caring and compassionate then it is time for them to look for  employment elsewhere!

it is wonderful when it works for everyone,  but when it is your loved one that is not being treated properly, or the families of the loved one knowing this is the end can be very frightening to the caretaker.  Hospice was a bad word in my house, only because I was not educated enough to know what they were really about.   I just knew one thing death.  I wanted no part of them,  18 hour's after I spoke with my Dr. in the hospital I spoke to them signed the papers, they came in prayed with us and for my Husband, they made sure he had med's to keep him calm  and comfortable.  They were wonderful to all of the family.  My doctor was with us till the end.  She said she would be  with us. she just led us to the proper care he needed at the end.  I was hell bent I would be taking care of him myself.   But I could not do what they could do.  He passed peacefully.  And they were wonderful.   Maybe when the time is so close if they could comfort the caretaker alittle more people would be more receptive of hospice.  Truly mine was shear ignorance. And being fearful to be honest it was at the end.  I hope this helped you, I think the lady that posted her disappointment with hospice was like me, frighten of  her father leaving for good.  I was  so wrapped up in my own grief I could not think properly, now when I look back on the passing.

I NEVER (read: EVER) had any experience like that with Hospice while caring for my father.  

I would SERIOUSLY look into a different hospice provider.

This is an extremely important, meaningful and demanding time on many levels.  Proper hospice is vital.  They need to care.  That's what it's all about.

All of the people we dealt with (through Gilchrist Hospice) were incredibly caring, warm, and compassionate.  Matter of fact, I will be scheduling some grief consuling with them soon (and it's covered in their services through my father even after his passing).  I have up to a year to seek guidance and support through them (they have even made personal calls to check in on me).  

This "hospice" company/care you are describing is the exact generalized image of hospice that scares so many people from such an amazing service.  

Seriously, look into a new hospice provider or do whatever it is you have to do to get satisfaction from them.  

This is time that can never be "redone". Your father, you, and your family deserve to have the best transition as possible.