Hospice. What happened vs. what you hoped.

I watched my father die in hospital. I watched my mother die in Hospice. I wish so much that I could have put my father in Hospice.

Hospice was there for us when Daddy died. It was a peaceful, calm and dignified death. My FIL was cared for in the hospital and his Dr essentially OD'ed him on morphine, per the kids' OK. He was really struggling to breathe and was in a lot of pain. 15 minutes after the injection, he quietly passed.

I've seen families screaming in the hallways of hospitals over one person's desire to see the patient's DNR being enacted and some screaming that they're killing mom...and THAT to me is awful.

I have a friend who has multiple health issues. It finally got to the point last week where the Drs said they had to amputate her entire leg, to the joint as she was so infected---now, what kind of life is that for anyone??? They were actually considering it. But last I heard, they had opted for Hospice and I, for one, am glad. The suffering will end. This woman has 3 low functioning (grown up) kids who do not understand a lot--so it's hard on them. BUT, I know the end result will be peaceful and she'll finally be out of pain.

My trust is pretty clear on this. And I know my kids will accept my wishes.

I am not saying there are not some bad Hospices but I have never experienced it. If done at an AL or NH, Hospice works with facilities. The only thing I don't like is that if done in home someone has to be with the client 24/7. They only get a break if an aide is there or someone comes to sit with the client.

Someone on forum said that nurse kept upping the morphine and overdosed the client. A nurse needs Dr. orders to increase any meds. Morphine is used to help with breathing and pain. You may not feel a person is in pain but nurses can tell by high BP.

And after watching my MIL suffer, I will absolutely choose hospice for myself, my husband and my parents if the time ever comes. My MIL wasnt in any pain which was surprising because the dying process IS painful and pulmonary fibrosis IS painful at the end. But she couldn’t breath. We watched her suffer. Coughing so bad I wanted to call 911! I saw her lose her breath and struggle to catch it.

her death would have been very very inhumane, cruel, and suffering without hospice. I will never understand how anyone could choose suffering. Never. It’s a horrible thing to witness and I can only imagine how god-awful it is when you are the one suffering!

i have talked a lot about my family’s one experience with hospice, on this forum. In no way did they speed up the process. The doctor said she has 3 months to live and she died exactly 3 months later.

I expected hospice to make the dying process a smooth process, to keep my MIL comfortable and allow her to pass peacefully. I didn’t know they would provide religious support and counseling. I thought they would be here to support her and the family and give her meds to keep her comfortable and keep things under control. She had pulmonary fibrosis and when the doctor said she had 3 months to live, she voluntarily signed up for hospice. I wish we had had a family meeting when hospice came to the house to set her up. Or at least a meeting with her social worker and nurse sometime during the few weeks so that we ALL knew what was going to happen and what her wishes were. When she got the bad news, she had an attorney come out and create an irrevocable trust, a living will, a durable POA and an advanced directive. So we knew she didn’t want to prolong the inevitable and we-at least my husband I I did-knew that she also wanted pain meds. Hospice was wonderful. They provided a hospital bed and any medical supplies she needed. They provided a caregiver to come out and bathe her 3 times a week. She was a very private woman. I know that having to have a stranger come bathe her was a very difficult thing to accept but it allowed her to keep her dignity.

Hospice never pushed meds on her. The first month, she took nothing. The 2nd month my SIL got her to start taking the anxiety med (to help control her breathing) but she took it only when she wanted it, when she thought she needed it. Which wasn’t often because she was afraid. The big problem we had is that her long time boyfriend was her primary caregiver and he is very much against hospice and didn’t want them. He didn’t want the meds, he said they would kill her. And he had her afraid to take them. He refused to give them to her. So.....that is why I wish we had had a family meeting. We could have had a plan. We could have easily identified problems and had someone step in. My MIL suffered quite a bit because she didn’t take the meds she was given. The last month of her life, her breathing was really bad. the last month there was a lot of suffering. When you are dealing with someone against hospice, at least in our experience, they focus on trying to keep the person alive. They don’t care about comfort. While she was struggling to breath, he wanted her to eat! By this time, she could only eat a few bites because she couldn’t breath and food made her chest feel very full. She ate what she could. He wanted hospice to give her appetite suppressants. When her digestive system started shutting down, he still insisted she had to eat. Well meaning family members wanted to bring her marijuana! So again going back to “we should have had a family meeting”....we absolutely should have because we would have been prepared and known what to expect. I read the booklet hospice provides, the name is escaping me now but it is a great resource. I needed to know what what going to happen and when. So nothing that happened was a surprise to me and I knew when her disgestive system had started shutting down-she didn’t want food, her urine was brown and she stopped having bowel movements. Everyone else wanted her to keep eating, not knowing that food would cause her discomfort. She did keep eating a little bit but......all it did was cause great discomfort. She did rally 2-3 weeks before she died, and eat 2 full meals.

Hospice met my expectations. It’s not their fault at all but I just wish she hadn’t suffered so much. She DID pass peacefully. Her last 4 days, she was given morphine 3x a day, the last day it was given hourly. Without hospice she would have struggled and suffered a horrible horrible death!!! Struggling to breathe until the very end.

Thank you

I knew my parents were at a stage where they would be passing shortly. I was not familiar with Hospice so at the meeting I asked questions and learned every thing I could about the care my Mom would be receiving. Learned about the pain meds, and found out the dosage was no different than what I had when I had major surgery.

My Mom was in pain because she was pretty much bedridden thus her back was hurting, and her mind was destroyed by late stage dementia. With Hospice she no longer felt that pain so she was able to rest peacefully.

The following year my Dad was in his final weeks due to aspiration pneumonia, he was constantly coughing which I could tell was exhausting him and he was having sleepless nights. With Hospice, Dad was coughing very little, and he was sleeping much better. Dad was ready to meet up with my Mom who he missed so very much. Dad wasn't afraid of death, either was I of his passing.

I knew that my parents timetable would be the same with or without Hospice, so why not make this final journey as peaceful and comforting as possible.

So, yes, everything went smoothly and there were no surprises. And yes, Dad did rally, but I knew it was temporary. I think rallies give the family time to appreciate a bit more time with the love one.

My parents taught me about the circle of life, thus there was no high drama, not even a little bit. Communication is the key.

Hospice is not the same in Canada as the US. My step dad was in or local hospital for 6.5 weeks and on Palliative Care for 1/2 that time. There was discussion about him coming home and that would have been similar to Hospice Care in the US.

But him coming home was not a practical option for my Mum, nor for their house.

He was in pain due to metastasized cancer and was given low doses of morphine for the pain. I was with him and Mum when he died and it was a peaceful, pain free, death.

Like Mountain Mouse,we knew when he was in pain by his expression, even when he was unconscious. Once given morphine, his body relaxed.

The care he received did not hasten his death.

Disappointing, sad. Would not wish on my worst enemy

We completely expected mthr to pass within the 6 month time frame. She was no longer bouncing back from her colon cancer surgery, her memory was worsening beyond that which it was when she needed 2 units of blood for her super low hemoglobin, and she was losing weight. She was a prime candidate for leaving this earth. We prepared by figuring out final arrangements and bringing in hospice. Hospice sent a nurse out twice a week to start with, and mthr fell and broke her wrist. Hospice evaluated her, called for a mobile xray, and treated her pain but did not cast the arm since she was picking at all sorts of things and would have picked her skin off! She never had to go to the emergency room as hospice had it under control. She always freaked out at the ER, even when she was young. This was a tremendous benefit!

Hospice was under instruction not to give meds to treat infection, but to only treat pain. We'd read Gawande's Being Mortal and were comfortable with the plan mthr had written long ago (Advance Directive). Well, she did not die right off the bat. Apparently the daily visits by the aide to dress her and make sure she ate, and the evening visits to put her to bed did the trick to help her stabilize. She actually got better and started gaining weight, but then would drop off the next month. This went on and on until she stabilized and she came off hospice. They cured her!

Well, not quite, as she will still die, and her speech and ADLs have dropped to a lower level but she is no longer losing weight. I really think the chaplains who visited her and called me, the music therapy, and the art therapy every weekend were so helpful in keeping her engaged that those are what helped her regain the weight when she lost the will to live. I'm looking forward to her having another pleasant experience with them when that time comes again, but next time I doubt she will "graduate."

If no one has ever told you, I am. Thank goodness your mom had you as an ally.

My mom was on hospice for six weeks before she passed away at home. The hospice service workers were amazing. They were kind and caring, brought over any equipment and supplies I needed for her. With their listening and advising, there were so many times I thought they did more for me than for her!

Nearing the end, the nurse brought morphine and another drug that now escapes me (the one that's used in the final hours). Mom didn't need any of those drugs until a few days before she passed. On a Thursday evening she went to sleep and would not wake up. Her face would scrunch up like she was in pain. After consulting with the hospice nurse, who came right over, said the minimal amount of morphine would relieve her of pain.

My Twisted Sister #1 refused and threw a fit: "It's a controlled substance!" It was awful and I had to fight. Finally TS1 was there when the nurse returned. The nurse assured TW1 that the morphine was needed if Mom was in pain and this was the absolute minimal amount! Finally, we administered the morphine and Mom relaxed. Later, Mom started having problems breathing and we gave her a bit more to help her breath.

For the most part her passing, though long (almost 3 days), it was peaceful.

I have not been through with a parent. I have seen the non hospice option in a dear family friend. The end of life is and can be be so hard. So ugly. So painful. He was scared to death. Panicking. Pulling out IV. Agonal breaths. He was struggling. He was afraid.

For mine, give her the morphine cocktail. I don't want to see my mother ever go through that. To see the fear and panic.