We have a long-established not-for-profit hospice that provided excellent care for my dad as an in-patient in their facility. It was a gift. He was here visiting (with Stage IV cancer) when he crashed, and his doctor authorized hospice. They came to the hotel where he was staying (couldn’t negotiate the steps at my house) and determined that he needed in-patient hospice to become stabilized. The hospice reminded me of an abbey – it had a peace and calm that was palpable. The hospice nurses and doctors and volunteers were great, and they worked very hard to find the right solution (methadone, in his case) for pain control. Morphine wasn’t as good.
In his last days we did have some good talks, he watched a few baseball games, and had a few spoonfuls of pudding that he asked me to buy. Other than that, he wasn’t much interested in food, though it was certainly available.
After a few good days, he drifted off and wasn’t able to be roused. All but one of my siblings made it out here before he passed, and the hospice chaplain had some long talks comforting my sister who hadn’t been able to make it in time.
I don’t remember the name of the booklet we were given, but it was a real help in understanding the stages of death. He’d just seen his newest grandchild, and I think his body decided that the mission was accomplished and it was ok to go.
I’ve heard some not-good-things about for-profit hospices, but our not-for-profit hospice was great. Given the number of obituaries I read that request donations for hospice, that seems to be a common reaction even though most people have hospice at home, not inpatient.
I do think telling when a person is close to dying is a guess. @apple23 – what a horrible situation. I would follow-up with them when you’re ready. That is awful.
My FIL passed this July with hospice in Colorado assisted living, with his wife by his side, and MIL said he may live for another month. It was a shock when he passed that night, but it happens as it is supposed to.
A couple of weeks before passing the hospice coordinator suggested all family members watch an online video made by hospice about the dying process.
Like the booklet, Terriwitt mentions, it was a great help to all, and could be viewed as often as we liked and needed.
No one has mentioned a video explanation like this and it was incredibly helpful.
Our family members wore a DNR bracelet. It was a bright color, and would have been very hard to miss. This was one of the first things Hospice staff did when they became involved.
I’m sorry for your loss, and that hospice didn’t work put so well for you.
My one experience with hospice was extraordinary, given all we had been through before then. The hospice people had him released from the other option and into hospice very quickly, and they were very helpful. I remember the hospice nurse coming to our house, and we wound up with 2 prescriptions, one for morphine, and another for something else. It was Saturday evening, and many pharmacies were closed. She and I literally spent an hour and a half at my kitchen table working three phones to find a place that was within reasonable distance and could fill the prescriptions. She didn’t just leave the prescriptions and take off. I felt like she went above and beyond. They also handled the actual death very well.
A quick aside on the DNR - it absolutely needs to be out in plain view or on a bracelet or something. FIL was kept alive for 2.5 days and it was something like 37 thousand dollars. The airlift alone was 17k. It is just appalling for someone who never wanted that and was essentially dead when EMS was called. They did what they had to do when called but I wish it had turned out differently for him. After the fact it puts family through all the decisions about “pulling the plug” on dad.
My experiences with hospice have been good. My father passed this year after 6 months of hospice as there was nothing medically that could be done for him. he was just dying. It was a slow, agonizing and long ending for an amazing man. Morphine is not normally used until the very, very end and generally that is a signal that the person really is at end of life. In my opinion the agitation, anxiety and things that happen in the last days or weeks of life are greatly eased through the use of morphine and other drugs and at most not utilizing it does not bring the family all that much more time. Hospice workers should be able to articulate that to families. It was my experience that seasoned hospice caregivers really do seem to know when it is weeks, or days, or hours. It can be very difficult for family members to come to grips that the time really is limited at the point that the heavy duty drugs are used. I’m so sorry for your loss Toledo.
This is the benefit of larger hospices - they have their own pharmacies they contract with. Any hospice-related medications are delivered to wherever the patient is. Any regular medications that the patient is already on, and will remain on, have to be picked up whichever way that had been before, but new meds related to the hospice diagnosis are delivered - and this is 24/7. It’s just another question people can ask when interviewing a hospice - how are medications provided by hospice obtained? Do you have to pick them up? Or are they delivered?
Typically when someone either comes on hospice, there are three medications that are standard for any new patient, meaning, the hospice staff makes sure they are delivered to the patient’s residence so they’re on hand when needed - morphine, ativan (or a similar benzodiazepine) and scopolamine (which helps dry up secretions in the mouth and throat that patients may be producing). Scopolamine is usually provided via a patch, so one less med to give sublingually in the end.
My father died October 1st at a hospice facility. He has struggled the last 5 years with many different diagnosis (C-diff, throat cancer, fungus int he lung, shingles in the mouth, etc.) but was always thought he would get better, and he did. The last year he just took food through the g-tube since he could no longer swallow, but he still had quality of life. At the beginning of September he went to the ER and was diagnosed with atrial fibulation. Even though they got his heart back in beat, he still felt awful. He was in the hospital, in rehabilitation, back to the hospital, home, back to the ER, in ICU and finally in hospice for 4-1/2 days. Because he came from ICU, he was able to go to a WONDERFUL facility…very peaceful with attentive nurses/helpers. He arrived on Sunday and died on his 80th birthday morning on Thursday. I felt we had an excellent hospice experience. He was conscious until Wednesday, and seemed comfortable. One of my sisters was having a problem with not feeding him, so they let her put food in his g-tube (even though he didn’t need it), and kept oxygen in his nose until he passed away. I was surprised, and a little shocked, that he did go so fast, although the book that we were given to read made me realize that he was probably in the process dying for several weeks. He died peacefully with the help of the morphine. This might have rushed his death by a few hours but I am glad he was not in any pain. It was also nice for the family to be family, and not caregivers at this time. I am sorry your experience wasn’t as good.
Sorry for your loss, kjcphmom. The book they give out in hospice is so awesome … it was helpful when my mom was dying to understand what was going on. It was also really helpful a couple years later when my dad was fading away. I read the book to my brothers so they could understand that he was going through stages of dying.
I agree kelsmom, we had “the booklet” when my H’s mom died and then I gave it to my mom when my dad was dying. It did help to understand each stage and what that meant.
Regarding DNR bracelets-they are typically put on in hospitals to indicate no resuscitation. The ones mentioned here are community DNR bracelets, which can be helpful in avoiding end of life unintended misadventures with the medical system. At least in my state, the attending physician needs to order DNR and complete paperwork.
My Dad had a stage IV very slow growing cancer, he lived several years and while he faded a bit, he did pretty darn well. The last month he was jaundiced and we knew that was bad, but it was rough to get a straight answer about his likely time remaining. The week he died, he had some bad pain on day 1, we called Hospice in the morning of day 2, they came and interviewed us all day 3 delivered the bed etc., day 4, and he died day 5.
He was put on morphine when they delivered the bed, he fell asleep and never awoke. When he went to sleep the nurse told me that many times people in a lot of pain would sleep 24-48 hours when they first got the morphine relief & then awaken.
I think my regret is that Dad was “fine” in that he was not in horrid pain except when he moved from flat to sitting up. I wish we had tried no morphine that first day and seen how well he did with the lifting bed. I don’t have any idea if that morphine actually hastened his death but it did prevent time spent together. Family was also headed out way Days 5-6-7 and I will always wonder if he might have lived those extra days without the morphine. Most importantly, he was stating pain of 3 out of 10, so not miserable, not moaning, only bad when moving in that one way and with the bed that could be avoided.
I would not say any of this is hospice’s fault, all the people who went in and out were shocked he died so soon as he really seemed pretty good. There was no malice, no callousness, heck, the nurse told me they have lots of people functioning on morphine pumps with 10 times the dosage he was getting!
But still, I do regret just jumping in to the morphine, I wish I had taken it a bit slower.
Yes, the hospice booklet was incredibly helpful. In fact, based on that booklet – plus knowing my dad – I came closer to predicting his death than the medical people. I watched him go through the steps exactly as laid out. I knew we were getting near the end when, one Sunday afternoon, he declined my offer to turn on a football game. I couldn’t get the SNF staff to believe that that was significant, but Dad never declined to watch a football game in his life, and I knew – even if they didn’t – that that was him starting to withdraw from this world. He passed 6 days later.