Follow
Share
Read More
This question has been closed for answers. Ask a New Question.
1 2 3
My experience with hospice was this - I interviewed 3 different hospices before I chose the one that my dad's doctor had first recommended. Yes, during the first meeting they talked about discontinuing all of dad's medications. However, when HIS nurse came we looked over his medications and she left the choice up to me what to continue and what to stop based on what meds would keep him comfortable. In my dad's case, with end stage congestive heart failure, we kept him on all of his heart meds, his diuretics, his rheumatoid arthritis med, his coumadin but stopped his oral diabetic med and some supplements because they weren't necessary. I was also told that anytime I wanted him to go to the hospital, I had the choice. If the hospital decided to admit my dad, I had to let hospice know so that they would discharge him from hospice. Once he returned home, we could then readmit him to hospice but could also decide not to. My goal in all of this was to not only keep dad comfortable but to reduce the number of hospital visits for him. He hated being in the hospital and was getting more and more confused each time he was there. It was so hard to see them tie him down and have someone watching every move he made just to keep him safe. Dad did go to the hospital a few times and the ER doctor would ask what measures were to be taken. One time, a week and a half after dad was admitted to hospice, they thought his diagnosis was a combination of pneumonia and CHF and I said give him 24 hours of IV antibiotics to see if he gets better and if not we would make decisions at that time. He got better and came back home the next day. Hospice did ordered oral Morphine for my dad and it was a life saver. My dad had suffered with severe back pain for years. He couldn't take over the counter stuff because of the coumadin and his options for pain pills was very limited. Even though he usually would only take a minimum dose 3 times a day of the morphine, he was so much more comfortable. I also could see that it did help his breathing. I always thought the opposite but it allowed him to relax and take deeper breaths instead of panting and getting more anxious. And when my dad was heading down the last road, they were there one hundred percent, helping with whatever they could. The day he died, I couldn't even think straight when I realized what was happening. I called his hospice nurse, she came right over and gave him morphine. He was able to relax a bit but was still conscious and able to talk to us. Without that, he would have suffered for much longer with feeling like he couldn't catch his breath. That would have been torture not only for him but for me. I always promised him I would do what I thought was best and he trusted me. There would have been nothing I could have done that day without hospice and the meds they provided. He was in hospice for almost 5 months and those were his best for the whole year. I'm sorry that anyone feels that hospice is assisted suicide. I had just the opposite experience. Kuli
Helpful Answer (5)
Report

REALLY????? I think you over reacting my friend i think hospice is the best thing..i work for a hospice and sucide is not it ..its a comfort zone actually for both..but the first lady is right you have every right of your own opinion but please dont think of use a suicide method thats not what we do.....
Helpful Answer (3)
Report

From my prospective Hospice is a govn't sponsored legal suicide/murder. I lost my mother last month due to this practice. Hospice called me requesting that I get power of attorney ASAP because Hospice wanted to put her down. My mother did have her share of health conditions and needed pain management. Pain management could have been conducted by either pain management or oncology but her Medicare(another govn't health plan) Dr. would not refer her to either and would only give her 5mg oxycodone IR. I would not seek power of attorney because my mother was able to make her own decisions and she was active and able to do her own cooking, laundry, etc... So I called my mother ( we live about 750 miles apart) and told her what hospice wanted me to do. My mother said not to worry cause she didn't want hospice care anyway. The next thing I knew, hospice went to an Elder at the Kingdom Hall of Jehovah Witnesses because he was listed on her health care proxy as a liaison for no blood. He and the hospice people met up again with my mother and talked her into signing the paperwork giving her the impression that they were signing her up for assisted living. All of this was done behind my back and I did not hear about it until a few days later. Once I found out, I told my mother to call me when hospice comes to talk with her. My mother has a speaker phone and I could ask questions and state my concerns. My concerns were that they were going to give her medications that would put her down on her back and/or make her a health risk as she does live by herself but has never fallen and even takes her baths by herself. I was mainly concerned about Roxanol (liquid morphine). Hospice stated that they were not going to give the liquid morphine and were going to use a morphine sulphate pill 2x day. They ASSURED me that this would make her more mobile because she would be more pain free and able to be more active. I then told my mother while hospice was present to go ahead and at least try the pill but I also stated that she should and could stop if she feels that she is too sedated. I also told her that she could refuse hospice at any time along with the medication but I wanted her to try cause I did want her pain to be managed. 2 days after they had started her on the morphine, they gave her seroquel. Hospice never disclosed to either of us that they were going to give her seoquel. The following day after her first dose of seroquel she was out of her mind. Walking around her home naked and she had fallen once. I also found out that she had taken her morning meds twice, so she had taken 2 doses of morphine and 2 doses of seroquel all while she had a caregiver with her. Hospice now decided to call in Social services to evaluate her as a health risk so they could take her out of her home and into a Hospice center. I insisted that the Seroquel was putting her over the edge and wanted her off this med. Hospice told me not to worry cause they were going to quit giving her the seroquel and was only going to keep her over the weekend to evaluate her meds and that she would be going home on Monday. When Monday arrived Hospice told me that she was on a 5 day respite and would be going home on Wednesday. All of this was being told to me so that I would not rush to her side and cause any problems. By Thursday, I couldn't even talk to her on the phone from being so drugged, so I decided it was time that I get up there ASAP. I got to her side by Friday afternoon and she was soooo drugged up. She knew who I was but couldn't communicate well. There was no way that I could take her out and bring her home with me. At this time hospice disclosed that she had been on Roxanol for 4 days. I did get a couple of times (about 1/2 hr each) where she could communicate with me and then she was totally drugged up and unable to talk or drink. 5 days later she passed away. I just want to let everyone out there know that Hospice has one job and one job only and that is assisted suicide/murder. In the case of my mother, I feel as though it was murder because of the way they went around to do things. If you and your loved one are OK with this process and that is what is wanted, I'm sure it's a good program but if you are wanting them just for pain management and in good faith feel that they are going to do as you request, please think again. Most hopices are govn't sponsored and want these people off Medicare and Social Security and the sooner the better. At least this has been my experiance with the Hospice program.
Helpful Answer (3)
Report

My mother was gravely ill this past summer with pneumonia. She is in a nursing home. She has a host of other problems as well. She was on oxygen and the nurse manager called me to suggest hospice care. It was the best decision I ever made. Another person here posted that morphine can open up the lungs; one of the nurses told me this as well and I had no idea it had this effect as well as pain relief. My mother was suffering and I would do anything to help her. She made a miraculous recovery and showed results soon after the morphine. Of course this was administered my nurses; so I don't blame you for not wanting to be the one administering to your mother. She was made so comfortable it was like night and day.

So, just a positive note about hospice. This was a private hospice by the way.
Can't say enough about them and all their support. My thoughts and prayers are with you - difficult decisions - trust your instincts.
Helpful Answer (3)
Report

Shortmomma - My dad passed away in October of last year. I had pushed to have him admitted to hospice because he no longer wanted to go to the hospital but I didn't want him to suffer needlessly when the time came that his congestive heart failure worsened, as it does. The hospital would give him meds to get the extra fluid out of his lungs, readjust his meds at home and he'd be ok for a month or so then back through the same cycle. The experience we had with hospice was wonderful. The nurse, nurse's aide, social worker, pastor - all were nothing but supportive, assuring me that at any time I could send him to the hospital and if we decided to treat him for his heart failure, they would simply discharge him from hospice so that Medicare would cover the hospitalization. I never felt like they were giving up on dad or pushing assisted suicide. However, when the time came, and it came very suddenly in dad's case, it was comforting to know that they had the meds that could help him remain more comfortable and not struggle. As opposed to hospice expecting me to administer the meds that day, when the hospice nurse got to the house within a half hour of my call, because I too am a nurse, she said to me "Now YOU are the daughter and I am the nurse. Just be here for your dad and I'll take care of his comfort needs." I know she gave him much more Morphine than I would have been comfortable with and it didn't stop his breathing, it just helped him not struggle so hard. He was still talking to me and the family but wasn't panicky about his breathing even though it was clear he was not breathing normally. And as another has said, if you don't like one hospice, call another. I got lucky with the one dad's doctor recommended but had called several others to better understand the whole process. And instead of thinking you're hanging out just waiting for her to get sick, cherish this time. Spend as much time as you can with her, talk to her about how she feels about dying, tell her everything you want her to know and listen to all she says. Those will be the memories you will cherish forever. God bless ~ kuli
Helpful Answer (9)
Report

thank you all for the clarity about hospice. That was what I was looking for, honest personal experiences. See what I was hearing is that it is soo great, but what they didnt tell me ( until i pushed) is that its extremely hard for the family, emotionally, and financially. when something is presented in a cult worship fashion, it makes me second guess it... sorry that how I am.....
Mom decided to go with the hospice. Her Case manager said Mom is more sick than she is tellin us girls, apparently she is protecting us. Mom has instilled the help of her sister, so we arent so overwhelmed. Seems like now we are just hanging out, waiting for her to get sick, and thats pretty morbid.....
Helpful Answer (0)
Report

Morphine may actually ease breathing as well as pain - it will relieve congestion casued by pulmonary edema (fluid/pressure build-up in the lungs) so it may be ethcially very much OK to give it to make the actual dying part less awful, even if it makes that part shorter too. But that said, if you are not comfortable with that part then it would be right to have a nurse there instead or just because this is all very hard on caregivers to face death so directly. My mom had a bad heart attack in inpatient hospice that took her away - they gave morphine, which she absolutely needed as she was having classic, crushing chest pain for the first time ever... no one thought that was going to be it, though, and they left just her and me in the room - then her breathing changed and I sudenly realized this was it. I pushed the call button again, but no way was I going to leave the room to drag someone back in more immediately than they otherwise would have/should have come. I was glad I was there to hold her hand, but I wish someone had stayed to hold mine. When we had first checked in they actually wanted to take her off all meds except phenergan and oxycodone around the clock, assuming what we wanted was sedation and the shortest time to getting it over with, but I was still hoping for a little quality time, and I did insist they keep other things going...we got a wheelchair ride to the garden and a couple of pizzas shared out of the deal. I had not been comfortable when my mom first asked for DNR but with her heart the way it was, severe, diffuse, and inoperable coronary arteries, it would have been cruel to keep trying to make that heart keep working and I had to accept that. We could have tried a procedure called EECP but I did not think she could tolerate it, and we could have kept anticoagulating which was not really working anyways (she came into hospice having had another stroke and/or coronary event where she had passed out at the skilled nursing facility, even on the highest dose of Ranexa and nitro she could tolerate) and I still wonder if we could have had a little more time that would have been worth anything if we had tried that. So, no, it is not easy to decide, but you do have every right to talk it through with the doctors and nurses and settle on what you think is right and best in the face of the inevitable. It should not be a cookie-cutter one-size fits-all type of thing.
Helpful Answer (11)
Report

Shortmomma1, I would check with private Hospice companies before I'd go through your county/state Hospice. We had real good luck with the one we chose for my mom. They will still bill Medicare etc just like the others. They aren't supposed to be hurrying your mother along to die you know, just supposed to be making her comfortable as she travels that road. We had a wonderful nurse that was more than willing to accommodate us when we wanted mom to stop taking certain pills that were causing hallucinations. You are NOT a slave to them, they work for you. If you're not happy with something they're doing, then make your voice heard.
Helpful Answer (4)
Report

From my understanding of it, the Do Not Resuscitate order is in place so that the patient (who is expected to pass away soon) does not need to have a breathing tube installed, which would only prolong this final period and can be very difficult for the patient. My mother asked for the DNR order, and she received her wish at the end of her life. She did not end up in the hospital on a breathing tube, being kept alive by this device. She was allowed to peacefully pass while in the ambulance.

Shortmomma, I don't blame you for not wanting to administer the morphine, or whatever the drug is they are talking about. Can one of the hospice nurses be responsible for administering the medication? I am sorry you are going through this....God bless...
Helpful Answer (6)
Report

If you are not OK with hospice, you certainly do not have to accept it. It is totally optional. Please do not feel intimidated to use it.

People who do accept it generally accept that their loved one is at the end of life's journey. They believe that the outcome will be death, relatively soon. With medical advice, they believe that there is no cure for their loved one's condition, and no way to regain a quality of life. They do not want to prolong their loved one's suffering. They want the inevitable end we all share, death, to come naturally but also while providing comfort and reducing pain. They want help for themselves in understanding the process of dying, to help them accept the end.

What was your mom's reaction to the meeting with Hospice? Many people try to honor their loved one's wishes, whether it matches their own preference or not. Is your mother able to comprehend what was discussed? Did she express her preferences?

Like many people, I do not think of a DNR order as a wish to die. I do not think of death without medical intervention as suicide. You have every right to your own views and to make your own decisions, along with your mother. I hope you will not judge others harshly if they have other views.

I wish you peace with whatever decision you make. May you have strength as you face what lies ahead.
Helpful Answer (22)
Report

1 2 3
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter