Here’s a good link that may help answer some of your questions definitively. https://www.nia.nih.gov/health/frequently-asked-questions-about-hospice-care

I’m so sorry you’re friend is in this situation.

My own experiences are these:

My DFIL had hospice in his home for the last week or two of his life, knowing it was imminent. His family appreciated the support.

My mother was in memory care and had Parkinson ’s (or Lewy-Body, it was never definitive). After a year or two, one October, her care team and I had a regular meeting, and the list of ADLs she needed assistance with had grown, and I knew that they were going to reccommend a move to skilled nursing. That would not have been a good move for her, but I knew that those also made her eligible for hospice, and that if she were receiving hospice care she could stay in her familiar surroundings with staff who knew her and cared about her. And that is what happened.

A few months later, she seemed to have suffered a stroke and could not eat or drink well, and that combined with other symptoms indicated that she would be gone soon. And a week later, she left us. She had hospice care as well as the attendance of her favorite staff until the end. So, about four months.

Remember, too, that Jimmy Carter has been receiving hospice care for several months already.

Information is what your friend needs. I knew about the ”number of ADL” rule and what hospice allows (staying where she was) from casual conversations with other people, hearing their experiences, as well as learning that a visitor on my dad’s skilled care floor was not just a visitor, but had been someone’s hospice worker for two years!

Edit to add: Mom’s hospice care was provided by a third party. I had a few choices and chose a service whose workers I had seen elsewhere in the facility. But hospice worked along with her regular caregivers. They also provided a mattress for her bed (she had a hospital bed), took over bathing, and provided the incontinence and other supplies. And none of it cost us anything.

My recollection with my parents is that hospice has 3 parts: an evaluation, palliative care and end of life care. Most people hear hospice and think death is imminent. Not necessarily so. My father's palliative care lasted 11 months. End of life lasted a few hours. He went for lunch and could not be roused for dinner passed away by 9pm. Everyone is different.

I would suggest it to your friend. It was the greatest service for us as a family.

Our experience was the same as that of bpath. My mom's assisted living faciility provided end of life care for her. She had been living there for 6 1/2 years and essentially died at home with her adopted family of caregivers tending to her.

We checked when we were looking at assisted living/memory care facilities for her if this was possible and we chose this one because providing end of live care was standard for them.

To have to move her would have been devastating for her.

Does your friends dads place not provide end of live care or more intensive care at all?

Just to add, people can go onto hospice care, recover sufficiently they no longer need it and withdraw from that contract. Then resume if the need should arise again. There could be pain medications and comfort care available to staff where he is that might not be easily quickly available without hospice.

I spoke to them with Mothers bout with pneumonia when it was clear she wasn't regaining her strength. She was leaving the hospital to return to her senior apartment. There were a couple of stipulations I disagreed with, those were no IV fluids or IV antibiotics and I wanted both of those available to her if that came up again. Hospice supportive care was something her senior facility staff wanted me aware of even though they had their own RNs on site 24/7. Gratefully they were able to care well for Mom themselves although hospice did stay in touch with me.

blfenton, he was at home before the operation. Getting by (barely) with help from his elderly wife and some in-home care. He was in a lot of pain because of back issues. The surgery was a last-ditch effort to alleviate the pain.

The wife often bristles at my friend and her brother when they try to help so that complicates matters.

Are there services available that could explain to the wife what hospice entails?

Advice from a third party may be more readily accepted.

I'm sorry you are in such a delicate spot and sorry that your friend is in such pain.

From my experience, we had conversations with a social worker after a referral/approval from the attending physician. My mother was brought home, with the expectation that she would not last beyond the six months. She had home health and in-home visits, and the palliative care kit was nearby for severe pain including DNR instructions. As referenced in the link provided earlier, there are certain conditions in which Medicare and insurance need to verify before coverage kicked in. But the thing here is that death is expected per the physician. In this case. aggressive treatment was stopped but she still continued on medications, not just for pain, but to manage other issues. In the end, she actually unexpectedly improved and was taken out of hospice care officially. This is not the usual path -- there was an end of life prognosis in place.

Going to add to my comment above that Mom’s hospice care was provided by a third party. I had a few choices and chose a service whose workers I had seen elsewhere in the facility. But hospice worked along with her regular caregivers.

I haven't read all the posts, but my mother had hospice care for 6 months. We were told as long as one is declining, with no hope of recovery, they qualified for hospice. She was reevaluated every X weeks/months (? I don't recall.) It was great, as they brought and set up all the equipment and supplies she needed (hospital bed with air mattress, toilet aid, bed pads, pads for between her fingers and toes, adult diapers, etc). During this time I met everyone that came through their house, and later the extended care facility (she was there 6 weeks). They could not have been more helpful and compassionate.

My father was hesitant to begin hospice care, but after she fell and he was exhausted trying to do most of it himself 24/7, a hospital employee whose job was to inform paitents and loved ones of the options and her doctor convinced him. Hospice does not cover sitters, which were paid for out of pocket during daytime hours. They prepared her meals, helped feed if necessary, changed bedding/clothes, took care of keeping her clean between home health care visits, and a few other things.

You may be confusing hospice with palliative care. Palliative care is an interdisciplinary approach to improving quality of life, managing or reducing pain associated with serious and complex illnesses or conditions. It is not end of life care. Hospice has some similar goals, but for patients at end of life. The way hospice eligibility was explained to me was that the person had to have an illness of condition from which they were not expected to recover with a probability of end of life not more than six months in the future. I think my mom was in hospice a week or two and my dad right at a month, but patients can be in hospice for months or even years.

Sorry, but this is going to be long. My Dad passed away two weeks ago. He was at a skilled nursing facility which was wonderful, and went on hospice about 7 weeks before he died. Our experience with hospice was not good, so I couldn't recommend it to anyone without a lot of caveats. I know all agencies are different--but we were steered to this one by the nursing home staff.

My father was recommended for hospice after an emergency hospitalization for severe congestive heart failure. We had no prior knowledge that he had CHF. We didn't think he was going to make it out of the hospital, but he had a remarkable response to Lasix and beta blockers and was discharged and returned to the skilled nursing facility. CHF, we learned is a roller coaster, so he had wonderful days and others when he just slept. The nursing staff recommended we consider hospice. We agreed and the hospice nurse met with us to develop his plan.

Hospice takes over ALL medication. Meds are delivered to the nursing home through Hospice vendors and they oversee all administration. At the meeting the nurse reviewed his meds history and made suggestions to remove a lot of them. We agreed to the changes because they made sense. She also put in orders for the "comfort pack" (ativan, haldol, morphine). We were clear that we wanted it used only when necessary. She agreed and said we had complete say. She agreed to keep him on the lasix and beta blockers. This meeting was the last time I saw anyone from hospice for almost 4 weeks.

We had been by my Dad's bedside for over a year. He rarely, if ever had pain, and this hadn't changed since the hospitalization. Yet he started seeming really out of it a lot. Mumbling, not responding in his typical ways. He was too out of it to eat or drink. I asked the nursing staff what he was getting and learned that they had started him on all the "comfort" drugs. I had questions so tried to reach the hospice nurse assigned to him. Turns out it was a different nurse than I knew so they put me through to the agency nursing manager. I asked my questions and he said the nurse would be in touch. Later that day I was at the nursing home and I saw a woman at the nurses station asking "is that her" as she saw me walk down the hall. She asked me what my concerns were and responded in a very cool, defensive way--implying that I was accusing staff of overmedicating. She made many other concerning statements about my father's care, including that not to worry about his lack of food or liquid intake as people who are dying are better off dehydrated. I then asked if he was still getting the Lasix and was told that he "wasn't interested in it". I told the staff I wanted them to crush the pills and give him to him via chocolate pudding. They did that and also clearly decreased the amount of "comfort meds". He responded really well--talking, sitting up dressed, joking in his old way.

After about 2.5 very good weeks he started to really decline. He seemed to be having choking/breathing episodes where he would put his hands to his neck. We could hear a lot of congestion and he had started coughing again. Because I wasn't getting any information from hospice about the signs of death, what stage he was at (pre-active, active) I would spend hours googling info. He didn't really seem to fit into what I was reading but I knew that nothing is typical or predictable. Then we found out that they had stopped the Lasix again. I called an emergency care team meeting and insisted hospice be present. I asked why and when the Lasix was discontinued. All the literature indicates that for CHF patients Lasix IS comfort care and should be continued until death. No one could answer my questions, but did agree to start the Lasix again. But I got a call the next day saying the physician did not agree and was concerned the Lasix would promote kidney failure! My Dad died two days later. We all witnessed a couple of horrendous episodes where he was choking, gasping, almost convulsing. My poor 90 year old mother was frantic.

We have not heard anything from hospice since the care plan meeting and his death. No condolences, no questions about bereavement support (which is part of what they charge to Medicare).

I think hospice can be good and very helpful to people dying at home. From my experience it's a different story once they are in a nursing facility. But if the stepmom is already difficult and apprehensive, I would tread very carefully.

Oh teeda. I am so sorry about your dad. But what a difficult experience for you all.

@teeda, I'm so sorry about your recent loss, I imagine you're still reeling from all of it, especially the frustrating communication issues.

When DH's Dad was diagnosed with CHF managing the balance between the shortness of breath and the weakness and passing out from kidney failure caused by the meds was a struggle. He'd cough uncontrollably, get more lasix, become weak from the kidney failure, the Docs would back off on the lasix and he'd start coughing again. I'm sorry the serious side effects weren't explained to you.

Thank you all. I am so sorry for all the losses shared here. I am heartened to read the positive stories about hospice, and am working hard to let my more negative feelings go. I'm sure it's all part of the grieving process--maybe I'm a little in the anger stage. deegw, you are right--the possibility of kidney failure as a side effect was never mentioned until death was a couple days away. What we were told was that my dad didn't like taking the pills. And I had asked from the beginning not to sugarcoat anything with me! But as I shared, the care staff at the nursing home were absolutely amazing and compassionate all his time there. For that I will be forever grateful.

Teeda, I'm very sorry for your loss and distressed for you things didn't go more smoothly. The IV fluids withheld was the sticking point with me concerning hospice. At almost 94, mother had never had any of the 'almost expected' illnesses, no heart disease, blood pressure, diabetes, cancer. She was just becoming tired, wearing out and didn't recover from a bacterial pneumonia. She slipped away from us so peacefully while we sat with her, we weren't certain for a minute she was even gone. I would wish that passing for anyone - quick and peaceful. It's what held me together and I will forever be grateful to her care staff of 3 years. Staff who had crushed everything she'd ever taken for those three years including her vitamins - she had a fear of choking. Not a fear from experience, just something she'd come to believe which they catered to, wanting her happiest.

Please know I'm thinking of you in your very recent grief.

Teeda - I‘m sorry fir your loss and that you and your family had such a bad experience.

My 85 year old stepfather suffered a massive heart attack in May. He had open heart surgery from which he never really recovered. He had a long stint in ICU. Then went to rehab. He was released too early and had a disastrous couple of days at home. He went back to the hospital for 10 days or so and then to a skilled nursing facility. The nursing facility was awful, and he and my mother desperately wanted out.

They talked to hospice. They needed a doctor to say that his life expectancy was less than six months, and they couldn’t treat the terminal diagnosis. He developed kidney failure as a complication, but since that wasn’t the diagnosis they were using (Congestive heart failure was his diagnosis.) he could continue dialysis. I think they were able to do hospice in the either the nursing facility or at home. I thought at home sounded very difficult for my mother, but they wanted out of the nursing home. He wound up having a fall later that day before they signed the papers and went to the ER which turned out to be a blessing. At the hospital, they were able to recommend him for a residential hospice facility. He was transferred there, and it was amazing. So calm and serene. More like nice hotel than a medical facility. He passed away within a day or two.

I can’t say enough good things about the hospice facility. They allowed him to have a dignified, peaceful passing.

I've skipped through most of the responses (sorry,) but am wondering if they are giving him enough pain meds. Many places and doctors are being parsimonious about these now, even though addiction isn't really an issue for old folks with one foot in the grave. Poor fellow, when you hurt all the time, your 'life' is a misery. I hope they're able to making him much more comfortable.

I deleted my comment.

Oh, Teeda. I am so very sorry about your father and the hospice. That sounds absolutely awful. I am thinking of you and your family.

My experience with both my mom and dad (who were both in skilled nursing) and hospice was very different. My mom died in October, and they still reach out to me to offer bereavement services, for example. Hospice also recognized and alerted me when they were both dying, and I was able to be there.

Thank you all again. deegw, I apologize for hijacking this thread. But I am moved by each and every story that has been shared, it is really helping me. And I am also touched by your concern for your friend, deegw. She is lucky to have you.

I'm not sure if things are different in different states, but here, hospice is ordered if death is expected within 6 months. We have used hospice 3 times, for my mom, dad and grandmother. My mom lived 5 months after her diagnosis of pancreatic cancer. She had hospice pretty soon after her diagnosis, maybe within a month, I can't remember for sure. We also had a group of caregivers as my sister and I were both working during that time. My grandmother was in her early 90s and needed some care. My grandparents and my parents lived on joint acreage, so we were able to move my grandmother and mom in together. My dad was able to be there as much as he wanted. The caregivers started out as night only but as my mom got worse, we had them 24/7. My sister and I were there often (thankfully my work was not far and I would sometimes even make mid-day visits) and on weekends, we would sometimes spend the night, etc. During this time, my grandmother had some symptoms of dementia and my dad slipped on her back porch and broke his hip. He had hip replacement and we moved him with mom and my grandmother. I know, who would think all that would happen at once?! The caregivers were life savers. Then there was Hospice. We had a great experience with Hospice. We had a wonderful nurse who came several times a week. All medical care is turned over to Hospice. They worked hard at keeping my mom comfortable. They were very willing to experiment with drugs to keep her comfortable. She was sick to her stomach often and they were great at finding something that helped with that. She had a morphine pump. They worked to keep her pain under control without her being zoned out. They had social workers, chaplain, sitters, etc. also. They really try to help the family, not just the patient. Our nurse was good at telling us what to expect, what she felt was going on, etc. She knew within 48 hours that my mom's end was near. During this time, we felt we needed to devote our time and attention to our mom, and we moved my grandmother into AL (her sister was already living there). The plant was to bring her home once mom was gone. That never happened. The AL facility became her safe place. It was sad but we were glad she was so content there. When the medical staff there felt it was time, we had hospice with her but they came to the facility. There wasn't as much family involvement because we were not always there when they came. She did not require end of life medication; my sister was alone with her when she passed. I and my cousin had left just a bit before. My dad's situation was much the same, he was also in AL and if I remember correctly he had Hospice less than a week before his death. Because of the short time and us not staying round the clock, we didn't have alot of interaction with them, but no complaints. My sister and I and our husbands were there pretty much 24/7 the last few days and hospice did check on us, but dad was not in pain either, so no morphine, etc.. He pretty much was unresponsive the last two days. I can say all three experiences were good/helpful for us, but my mom's care was really great. She had a very caring nurse. We always had the same nurse, other than a few days off and I believe she was on vacay one week during that time. We bonded with her. I honestly don't know how they do the work they do. Also for us, the caregivers were such a good thing. They became like extended family. They were a group of 5 women who rotated the time. They cooked, cleaned, there was once or twice one of them took my dad to dr's appts., etc. They even found a man to mow! I am very thankful for the help we had during that time. I'm so sorry to hear there are those here who have had bad experiences with hospice. I can't imagine having to deal with that at such a hard time. : (

Our family had a positive experience with hospice when our mother was in end-stage Alzheimer's Disease. Similar to what others have shared, the criteria our hospice provider used was declining and with a terminal condition. Our mom was certified for hospice care about a year before she died.

As to your question about how to approach your friend, I think it is probably tricky. I think being supportive is really important right now. The choices of palliative care and/or hospice care are deeply personal and I hope there is a social worker available to her father and the family to discuss options. You are so kind to be there for her during this difficult journey we all seem to take with elderly loved ones. It's a good reminder for all of us to consider and document how we want to be cared for in these situations.

teeda - I'm so sorry for your experience with hospice and the loss of your dad. Hugs.

Gosh Teeda, you didn't hijack the thread. At all. I asked for info about hospice, of course, I expected people to post about their personal experiences.

Thanks to everyone who posted. I did ask my friend if anyone had suggested hospice to her Dad's wife or her Dad and mentioned that it may make him eligible for the "good" drugs and that he could also opt-out at any time. I haven't heard back.

I don’t have experience with hospice directly, but back to your question about saying something….

I have strong feelings about my own end of life expectations, as do many. The challenge is that it is both highly emotional and highly personal.

For that reason, this is one of those topics that I think one should wait for an invitation to discuss.

We may think it is a good thing to weigh in with an outside opinion, but often it’s not what someone wants to hear.

Here to go into Hospice Care they require a dire diagnosis. This is very intense end of life care that is 'saved' for those directly in need. There has to be brochures out there. Visit a local provider then you have some material with facts to hand the family--allowing them the space and privacy to make their choices.