I’ve had a couple of weeks to think about this and it is still bothering me. Everyone seems to love hospice, but our experience wasn’t the best. I’ve often wondered why people don’t choose hospice earlier, as I often hear about loved ones passing away after less than a week on hospice. Then it happened with my father. He was on hospice for less than 3 days, and the first day I refused to give him morphine. I didn’t like the standard choice of drugs from hospice. My father wasn’t in pain. He was confused and couldn’t sleep. He had end-stage COPD, coupled with pneumonia. Hopsice workers assured me that morphine would help him breathe easier, but I looked up the side effects and saw that it shouldn’t be given to people with breathing problems. It suppresses breathing and I feel it hastened his death. I feel it caused hallucinations, so they said, “Give him the Haldol.” Those side effects were worse, as it seemed to knock him out. I really wished that he could have been more lucid, giving everyone a chance to say goodbye. Instead I’m left with the thoughts of three really bad days.
Toledo, I don’t have personal experience with hospice, but I am sad that your father’s last days are not good memories for you. I’m very sorry for your loss.
Toledo, I’m so sorry about your dad. My condolences to you and your family.
My dad had in home hospice for about 6 months. It was very helpful and my mom really appreciated the service. A nurse came once a day, iirc. My dad also had 24/7 home health aid (not through hospice.)
We had a negative experience with hospice, too, due to red tape involving meds at home. I was not impressed. Made a difficult time even more difficult.
I’m very sorry for your loss, Toledo.
I could be wrong, but my sense is that the person who should have thoroughly analyzed and discussed whether morphine was appropriate for his condition, and who should have thoroughly discussed the benefits and side effects of the morphine with you, was the physician who prescribed the drugs, not the hospice nurses. There had to have been a doctor’s order allowing the administration of morphine up to a certain amount within a certain interval, with discretion to administer a lower dose (or none at all), depending on the perceived level of pain.
We just went through this with my grandmother. The physician’s order was for morphine up to every two hours but the understanding was that this dose would unquestionably hasten her death. A much lower dose and interval (1x a day) seemed to ameliorate her pain sufficiently, so we stuck with that. She nonetheless died very soon after being placed in hospice. I’m sure that if the higher dose had been given and if she had died at the same time, we would have been convinced that the higher dose of morphine hastened her death, but we would have been wrong.
I’m just very relieved that she was comfortable at the end. Although she was not lucid, there were clear signs that she understood that her loved ones were with her in the hours before her death (although, interestingly, her actual death occured in the very brief moment when she was totally alone in the room).
I’m sure that was comforting to all involved.
My H used to be a hospice chaplain. In the 3 years he was in the position, quite a bit changed due to changes in health care laws. There was a lot of bureaucracy. He also noticed that hospitals kept patients as long as possible, due to a change in the way they were compensated/reimbursed. That meant once they became hospice patients he hardly had time to visit before the patients died.
For the most part, he felt the care given was very high quality and caring, but he spent more time documenting what he did than he actually spent with the patients. As a chaplain, his services were optional/upon request of the family. They also had doctors, nurses, nurses aides, and social workers and they all worked together as a team.
I’m sorry you had a bad experience, toledo. It seems to me that at the end there can be a conflict between maintaining maximum lucidity and treating the pain and distress. I saw this with my father before we even entered the hospice phase (which in my opinion we should have done a week earlier instead of being at the hospital, but it worked out in the end).
I don’t precisely recall what the drugs were that the hospice nurse left with us for my father, but I recall that one of them was a weak oral morphine. She told me that it would ease distress, but that it was impossible to overdose on it. When she visited, she gave him more of it than we had been doing, and he became more relaxed and breathed easier.
My father’s cancer–originally prostate-- had affected the lining of the brain, which is what seemed to precipitate his sudden decline. He also had bone mets. Did the morphine, even in such a low dose, hasten his death? Possibly, but I would rather that than have him live a small amount more time, perhaps a day or two, in pain and distress.
These things are so individual. My father was able to talk to people at the beginning of the week in hospice, but not by the last day or two. I don’t think that was because of the drugs. Your father’s case was obviously different, as are your feelings about how the drugs affected him.
It is not my place to tell you how to feel about this, but you might want to consider that if your father was confused and unable to rest and therefore in considerable distress, as well as straining to breathe, that the drugs may have eased his passing for him, even though they may have deprived you and your family of more lucid time with him.
You were there with him, you cared for him, and you did the best you could for him, and you will always have that. It is a precious gift. My deepest condolences.
My experiences with hospice are nearly always positive. Far better than with the alternatives.
Haven’t had any direct experience, but I’m so sorry for your loss.
We moved my father to hospice this past July 6 days after having a stroke. I was a proponent of regularly using morphine and actually checked in with the nurses daily to confirm that he was receiving his dose. The stroke impacted his ability to speak coherently and while he was at the hospital, sometimes I could understand him a bit, but mostly it was gibberish.
I think from a couple of hours after arrival at hospice to his last moments, 5 days later, he wasn’t awake when I visited. The hospice had orders for no food or water (aside from a sponge tipped applicator) and I found the whole experience a bit horrifying especially watching him change physically as the weight loss accelerated. I couldn’t believe someone so elderly could hang on that long, as he was 93 years old and around 120 pounds prior to the stroke.
I always thought I could be there to the very end, but neither my brother nor myself could sit and watch him struggle to breathe. Although the whole experience was rather traumatic I wouldn’t want him to linger in hospital for months and would do it all over again. I also know my father would have requested morphine around the clock too.
Try not to have too much regret about not being able to communicate those last 3 days. I’m sure your father knew he was well loved and just maybe those drugs he was given at the end alleviated the pain and anxiety he would have felt if you had withheld them.
My dad did die one day after his care was transferred to hospice. He stayed in the same facility but was assigned different care givers and a different doctor. They started to give him drops of morphine orally to make him more comfortable, although we had a discussion with the nurse about how he did not seem to be in pain. He had become unable to eat and in the last day or two had great difficulty swallowing and had developed choking issues, so I can see how the morphine was helpful.
I can see how I might believe that hospice hastened my dad’s death, and maybe it did by a day, and I wish that we had known that the last day he would not have been awake. Overall the hospice decision was mostly a good one, as my dad died peacefully.
Mixed feelings about hospice here. My 78yo mom died recently after being on hospice for a few months. She had been in a nursing home, unable to walk, for about 18mo. After she went on hospice she was able to have a few extra things for her comfort (special mattress, reclining wheelchair), and visits from the hospice nurse a couple times a week (not much care/attention at all from nursing home aides/nurses). It seemed like they promised more (to get her to sign up) than they delivered, though. It’s a business like any other. My dad put off signing up for hospice for months. He probably didn’t want to face the fact that mom was nearing the end of her terminal illness.
Mom was able to continue treatment for myelofibrosis, (she also had had several strokes and multiple bone fractures) but as soon as she decided to discontinue blood tests and treatment (transfusions), they changed her pain medication, which suppressed her breathing, and, after being stable for the last year or so, she died within days. I’m fairly certain that it was the new pain medication which caused her to die when she did. I hear that this is very often the case with those on hospice. The patients are weak and in pain. Strong pain medicine slows their breathing, which gets slower and weaker until it stops. This is why some people say “hospice kills people.”(My f-i-l, who died in '06, was so adamant that he never wanted to be on hospice because everyone he knew who went on hospice died within days–proof to him that “hospice kills.” His daughter finally called for a hospice nurse when he seemed to be near death. The nurse got lost on the way to the house and he died before she arrived. So he got his wish in the end.)
Mom’s death was a great relief in many ways–it was hard to see her suffer and lose dignity over the years after she had her first major stroke (6 1/2 years ago). After that, she had brain damage and was never “herself” again. Then came a slow decline with myelofibrosis, pain, fractures, losing ability to walk, cardiac issues, more minor strokes, going into a nursing home after my dad and sister could no longer take care of her. A long road. But the timing of her death was unfortunate–everyone was gathering to celebrate her birthday (we knew it would be her last). Dad was going to take her home, where she would be surrounded by family. I wasn’t going to attend the party (I live far away), but my H insisted on buying me a plane ticket at the last minute (only one sister knew I was coming–I was going to surprise mom). As soon as I got on the plane, my brother called to say that mom had taken a turn for the worse overnight. (She was talking about the party the night before–her last words were about what kind of cake we’d have–she changed her mind from angel food to cheesecake. . .) I told my brother I was on my way there. When the plane landed, as soon as I turned on my phone, I saw that my 70yo aunt (Mom’s sister) had posted on FB that Mom just passed away! (Yes, my mom died–I saw it on FB. . .) We still had the birthday (funeral planning) party. We had angel food cake. And cheesecake.
I didn’t have a burning desire to be there in the room when mom died. My dad and several sibs were there. It was peaceful–she wasn’t moaning or gasping for air. She just slowly stopped breathing. I just sort of wish they had changed the pain medicine AFTER the birthday party. . . I wonder what would’ve happened. But I’m glad her suffering is finally over.
Experience with hospice and without - My mother died from Parkinson’s without hospice. One morning she was having trouble breathing and my father called 911. By the time they got there she had passed away. She wanted to die at home and she did. Just one day previous her doctor said she had 6 months to live.
My father-in-law passed away from Alzheimer’s 2 weeks ago. He too was having difficulty breathing. He was put in the hospital and put on hospice. He was given 1 day to 3 weeks to live. We visited him in the hospital and he was alert with obvious labored breathing. He was beyond communicating but I could sense some fear or anxiety in his eyes. He was placed on morphine and an anti-anxiety (Adovan maybe). The next day he spent the day sleeping with my mother in law at his side. At the end of the day she went home and 2 hours later got the call that he had passed away.
Did morphine increase the rate of death? I don’t know. I did google it and some people think it does but mostly the thought is that the morphine and anti-anxiety drug lengthens life if only by a couple of hours. For me, my mother died much more quickly then my father-in-law did and he was the one put on hospice.
Either way, I’m sorry for your loss. It’s hard to lose your parent. Know that he would have died either way.
My sister died in hospice care in March, 8 days after being diagnosed with cancer. She received hospice care in the same facility, but also with different caregivers. She was in incredible, hideous pain, so we had no dispute with the increase of morphine, but we all wish that the providers had been more forthcoming with information about how it would all play out. When she died, my sister’s daughter was 8 months pregnant with her first child. Since she had been so recently diagnosed, no one understood that the end was imminent, and my niece made clear to the providers that at the point that it became clear that there was no hope, they were going to open the envelope with the gender of the baby and tell my sister the child’s gender and name. She told everyone this, but it didn’t get through how important it was to the entire family, and my niece was pushed to increase the morphine (which was probably appropriate) without being explicitly told that one the dosage was increased, my sister wouldn’t be awake again. The decision was made to increase the dosage without that knowledge and my sister died 2 days later without having been told. She was buried with the envelope and no one else knew until the baby was born. The staff was pretty callous about that and we are all very bitter about it because I’m not sure how anyone could be callous to a very pregnant young woman sitting by her mother’s side 24 hours a day and praying with everything she has for her mother and child to be on the earth at the same time. But they were that callous. They really were.
My MIL had hospice care and it was everything it should have been and more. Respectful, compassionate, inclusive, excellent medical care. I’m probably going to get flamed for this, but so be it. My sister’s care was secular and my MIL’s care was religious and I wonder if that had something to do with it.
What most people don’t realize is that there are “for profit” and " not for profit" Hospice organizations. I am a healthcare provider( not Hospice related) and I can honestly say that like any other organization there are good ones and bad ones. I’ve worked with patients in facilities that have been on Hospice for a year before they died . In terms of Hospice starting too late, most of my experience has been families or residents themselves are not ready to admit that their condition is at the point where they will no longer get better. I have had personal experiences with Hospice on several occasions with my mother in law being my first personal experience. Her Hospice nurse was a godsend and the support she gave my family was unbelievable . My mother in law lived in Florida with a possible hurricane looming. She ensured my mother in law had all of her supplies well before it was scheduled to hit, and made several visits despite the horrendous weather .
Another variable here is that some of us experienced hospice care at home, and some in a hospital or other institutional setting. And some of us were the caregivers supported by hospice, and some loved ones were apparently in a 24/7 skilled nursing situation. Our hospice organization was allied with the visiting nurses association, and definitely non-profit (and secular).
One of the great things the hospice people did for my mother was discuss funeral arrangements and so forth. She chose direct cremation, and it was excellent to have the arrangements made in advance. When the time came, we called the hospice nurse, as directed–if you call 911 the EMTs have an obligation to try to resuscitate the person, which can be very traumatic–and she called the funeral home. She came immediately, and they came within a short, but not too short, time. (It was perfect, actually, I don’t know how they ascertain that…)
The other thing was that they made all the arrangements for the equipment we would need–the bed, oxygen, air mattress, linens, gowns–and had it delivered to the house and set up before my father came home. We didn’t have to do any research or make a single decision, other than where we wanted to put it.
It seems like death came quicker than expected in most of our situations.
It’s really impossible to tell someone with accuracy when someone is going to die, and anyone that does should be questioned, unless we’re really talking about the last handful of hours, and even sometimes that can be way off… someone can last much longer than anyone expected, or something else can happen that makes what seems like a day or two left, go immediately.
I think as someone shared upthread, the options of dying without hospice is something I would never want to consider - so many things can go wrong and you’ve got no one there to call on.
Recently I had an 93-year old retired nurse aunt who was on hospice due to ovarian cancer metastasis. She knew she didn’t like the way morphine made her feel, so she made it very clear (well, the family did, too) to hospice that there was a certain level of pain she was willing to tolerate if they used the morphine sparingly. But families need to communicate these wishes to the staff. And yes, I’ve seen situations where a loved one is traveling from far away and family chooses to wait a day or so before starting morphine so the patient can be alert when that person arrives. Personally, I had the situation with my mom - she developed peritonitis and due to a weak heart, elected not to have surgery. She had had a really rough three days with a lot of pain, and it was going to take me ten hours to catch a flight and get there. They chose morphine as soon as she said yes to hospice, and was not alert once I arrived, nor until she died two days later. But she was comfortable - there are ways to tell someone is not comfortable even when they are no longer verbal, and my mom was comfortable… it didn’t matter to me that I lost that window of opportunity because I knew the priority was for her to be comfortable.
Having spent eight years in the industry, if/when it comes my time to choose a hospice for anyone (for my parents, my brothers made the choice since they were there locally), I would absolutely refuse a for-profit hospice and hope that wherever I am, there is a somewhat medium-size to large non-profit agency. This is based on what I saw in facilities (nursing homes/hospitals/assisted living, etc.). The business practice differences are staggering - I can’t tell you how many times I walked out of a nursing home after overhearing conversations at a nurse’s station between a for-profit hospice staff member and a facility staff member, shaking my head (and this was a common experience amongst my co-workers). That all being said, my sister-in-law had care from a for-profit hospice and it was fine - however, my nephew was doing some moon-lighting with that hospice (he is an anesthesiologist) and was overseeing her care, so I’m pretty sure that made a difference.
While people here are sharing their experiences of family members going too quickly after hospice enrollment, I can tell you hundreds of stories of patients who lived much longer than initially projected. I think the longest I ever saw one of our patients be on hospice was 3+ years. As long as hospice can document that someone is continuing to decline (there are lots of objective ways for staff members to document that), then they can remain on hospice. And yes, there were plenty of times that the agency I worked for was given a referral for someone, and they died before we could even get there - and we always had someone out the same day, usually within a few hours, if the appropriate information was shared with our intake department that the person was already close to death.
And finally, you have to understand that many times, what hospice can and can’t do, is dictated by Medicare. There are so many regulations about what Medicare will and won’t pay for, it would boggle your mind. So all health care providers on the hospice team (the attending physician is still considered a member of the health care team even after someone goes on hospice care) make decisions based on what Medicare (which is what private insurance typically also covers) approves and doesn’t approve of. And they do get audited, so any ethical organization will cross their Ts and dot their Is.
Is it perfect? No… but the more you educate yourself about expectations and goals, the corollary is usually a very positive experience. And again, the alternative, in my mind would absolutely suck - because I’ve seen what hospitals/skilled nursing facilities think is adequate pain relief and care, and it’s abysmal.
I’m sorry for your loss, Toledo, and sorry that the experience with hospice was not good. I suppose like anything, there are good and there are not so good … I do want to share my story, because I want others to know how good it can be (and wish it had been for you).
When my mom was dying, hospice was amazing. The hospital was horrible, and they wouldn’t give her meds to manage her obvious pain. Her hospitalist wanted to do more surgery that would prolong her life, but a very nice doctor told us it was not in her best interest. We arranged for Mom to be transported to a hospice facility, because we were told that she probably had a few months left … I knew my dad couldn’t take care of her at home. The night before she was taken to the facility was a nightmare of no care, no meds, and me yelling at the nursing staff. Even so, I felt awful when I rode with her from the hospital to the hospice facility - like I was giving up and taking her off to be put to sleep or something.
When we arrived, all of my fears went away - it was like being in heaven on earth. Not only was it a beautiful and serene setting, but the staff was incredible. The first thing they did was take my mom into a room and not only did they properly bathe her and wash her hair, but they TALKED TO HER. I had spent the past 5 days in the hospital with my mom, 24/7, and I swear to you that no one really talked to her (they did a lot of talking at her, around her, about her). The nurses asked her questions, gave her respect … I overheard a lucid conversation from a former nurse to her professional peers. She talked about what was happening to her, and while it broke my heart, it was also wonderful to hear the back-and-forth she had with the staff.
A doctor came to examine her, and she explained to me that my mother was in the final stages of dying. She showed me signs and told me Mom would be gone very soon … something the hospitalist was too busy to notice, I guess (still not quite over the bitterness of that hospital experience). She took time to really talk with me, and then volunteers came to chat with me & make sure I was okay. She medicated my mother because there was no point in letting her suffer.
The room was beautiful, and I had my own bed with a pretty quilt (funny, the things that stand out to us). Volunteers brought me food and told me to help myself to food/drink in the kitchen whenever I wanted. The staff gave me the space I needed to just be with my mom throughout the night.
The next morning, when my dad and brothers came, we were able to sit together with my mom as she slept peacefully. When she stopped breathing, the doctor was so kind to us as she examined her. The staff took care of everything in the most respectful way. It was the ending we needed to a difficult time, and we are forever grateful to the hospice.