Hospice. I am rethinking a good (??) thing.

Alva, hospice has been a long term argument on AC for as long as I’ve been here. There have been many “they killed my loved one” posts as well as many “they were wonderful” When my family used hospice with my mother, in a matter of weeks we fired them and never used the service again. She was a NH resident and hospice became an excuse for the really good care she’d been receiving from the NH staff to shirk their duties, constantly saying “hospice will do it” each time my mother needed something. Rather than waiting on hospice to show up, we let them go and resumed getting the good care from the NH. More recently, my dad chose to come home on hospice after a hospitalization and failed rehab attempt. With end stage CHF for so long he was tired of the merry go round. First conversation I had with hospice nurse was about their reputation for hastening death. She was well aware, said when you work with a population that is most often declining rapidly, your services mostly end in death, and you use big gun meds to bring comfort, the reputation comes with it. She assured me I wouldn’t see that happen. My dad went weeks with no hospice meds, but when the decline hit, it was swift. When he got so miserable and we started the meds, I was instructed to keep a log of each, dosages, times, and the nurse reviewed this on each visit. No one but me gave meds. I only increased on her advice. Often, he didn’t seem to need more so I held off. At the end, she came and certified his death, and then immediately took my log of meds, confirmed the amounts left of each, saw that all matched and destroyed the remaining meds in our presence. There was really no opportunity as I saw it to overdose my dad. The hospice nurse taught me as we went to be careful with dosing. My dad was kept comfortable but not completely zoned out until the point that he was mostly gone from the dying process itself. I’ve seen the dying process vary widely as I’m sure you have. I had an uncle who we knew was dying, he ate a big meal with my dad one night, they laughed and had a great visit, and then he was dead the next morning. It seemed to make little sense, everyone thought there’d be more time. I’ve seen hospice be both excellent and poor, have no doubt you’ll hear the full spectrum, but I do think they get a bad rap for seeing through the deaths that were going to happen anyway. Never underestimate the denial that exists around death, it’s a tough one for most

Third time!

I love your key point - if medications are offered, ask what they're for. Never be afraid to question.

But do LISTEN to the answers. Don't assume that the person in the uniform or the white coat is just determined to see your loved one off as fast and with as little inconvenience as possible.

I owe it to the forbearance and patience of my mother's GP - whose head I had just nearly bitten off - that a) my mother had access to morphine to help prevent respiratory distress and improve the quality of her respiration and b) I now understand how morphine works in this way.

But I also bear in mind that we were very fortunate. My mother remained able to tell me whether she did or did not want her morphine (and only requested it once). I never had to wonder whether my giving her the drug hastened her death.

My experience with hospice was great. My father had a brain tumor that was inoperable. I had taken him to the ER one day when he had started leaning over to the right in his recliner, and my mother was hollering about SIT UP STRAIGHT why dontcha, over and over again. Well, the man could not sit up straight or he would have, so I called for an ambulance. The ER doc recommended hospice and so, I gave them a call.

My father passed away 19 days later. Yes, he went from being alert, wide awake and joking to being dead within 19 days. Did hospice kill him? Nope. The brain tumor killed him. Hospice made him comfortable so he didn't have to scream in pain for the 19 day journey to his death.

Did hospice 'speed up' his death? I don't know, but what I DO know is that I was praying SO hard for him TO pass that I would have cut off my arm to have had it happen SOONER, frankly.

My father was dying from an inoperable brain tumor, one way or another. Whether he lasted 19 days, 28 days or 66 days, what's the difference other than pain & suffering? The prognosis was death. Nothing was going to change that and nothing did.

We are allotted a certain amount of days on earth, each of us. When those days are up, we go........we die, we leave the earth. Hospice can either help pave the way for a smoother ride to the end, or we (or our loved ones) can choose to take that ride alone, with no help. It's a choice. Hospice isn't forced down anyone's throat, it's optional. And, if we don't like what's happening with the hospice team, they can be FIRED at any time of day or night.

It's a good idea to talk to the hospice organization you are selecting BEFORE you sign on with them. To talk over what will happen, what medications will be given, what choices you will have, what steps can be taken to save or not save your loved one's life. Ask questions and feel comfortable with what's happening, that's the best suggestion of all.

SO relieved to see the answers that show that it remains what I always hoped it would be, what I so believed we must have, what is basically a "godsend". My own bro was home only four days, yes with heavy medications, and died. But we both knew he was returning home to die, and we had fought for it, fought the doctors to get him back to his much loved rooms in the ALF where he was. I wasn't able to be there. They were on the phone with me. I was clear he was being medicated to keep him from agitation and discomfort. To me, to see him suffer weeks, months toward the inevitable would have been awful.

When my mom was admitted to the hospice program, the hospice nurse told us that the average time in America that patients spend in hospice is 4 days.

Now, my mom was in it for 10 weeks. I have seen several posts here where people say their LO's were in hospice for well over a year. Which leads me to think there are a lot of people - a LOT of people - who call in hospice very, very close to the end. My SIL told me when my BIL died, they actually had an appointment with hospice the same day he passed.

I can only go based on my *very limited* experience with hospice. I think they were wonderful. I have zero complaints. In fact, the past few days, I've actually been sort of second guessing myself on waiting too long to administer morphine to my mom, and thereby made her less comfortable than I could have.

In response to your musings, Alva, (and this is in NO WAY a criticism of anyone here) I think there are some people who, either by their personality, or because of what they did/do for a living, are just more observant than other people. Alva, you were a nurse. You spent years observing people with medical issues. I'm sure you had any number of patients who, clearly while being in some sort of distress, when asked "how are you doing?" answered with the standard "I'm fine.". You know what signs to look for if someone is in pain/distress, etc. I'm a retired police officer. I had to learn to read body language just to keep myself safe. But there are a lot of people who don't see things that we might see clear as day. Even at the end with my mom, the nurses noticed a change in her breathing - a very small change, but a change nonetheless - that led them to believe she was starting her transition. I held off on morphine for 2 days past the first time they gently mentioned she might start to need it. I think part of it was the knowledge that once the morphine has to be administered, the end is not far off.

There is also the question of pain management/control. Both my husband and my daughter have had some very major surgeries, requiring opioid pain management. They both had to learn - the hard way - that it is much easier to stick to a medicine schedule to keep the pain at bay, than rather wait until the meds have completely worn off, and then try and kill it with the next dose. I imagine that isn't any different for people in hospice, whether the meds are being administered for pain or trouble breathing.

The amount of morphine prescribed to my mom was miniscule. I think prescription cough medicine has stronger amounts of codeine. If I had given her the entire bottle, maybe it would have been enough to overdose her. Maybe. But I don't think hospice has anything to gain if they are "helping" their patients to die. They get paid by medicare while the patient is alive. If anything, I think it would swing the other way, trying to keep them alive longer.

That said, I am sure that not all hospices are created equal. My hospice explained everything to me. The nurse went through the comfort pack with me, and explained what each drug in there was for, and when and how to use it. I think that communication is really the key. And I put a little more onus on hospice to explain, than for family members to ask questions...I think at the time your LO goes into hospice, you might not only be able to ask questions, you might not even actually know what to ask! And as with anytime you deal with anyone in the medical field, if you're not sure, ask! Keep notes, and do your own research. If your gut is saying something isn't right, then you should absolutely question it. As someone else said, hospice isn't a contract, you can always removed yourself/LO from the program if you don't like what's going on.

All in all, though, I am very grateful to the care hospice gave to my mom, and the support they gave to me. I would not hesitate to call them again if I were to find myself in a situation that needed them.

You know my position on hospice, Alva. Wonderful experience, wonderful people. But I can't judge those who think otherwise and have other experiences. We only get one side of the story and that's the emotional one. I'm not criticizing or judging, I just don't know the whole story. One thing I do know is that the caregiver is still their LOs advocate. You have to ask questions. You do not drop out of the picture when hospice comes aboard. You have a right to know what meds are given and why. Does the hospice nurse/care mgr call a couple of times a week to update you? Does the chaplin call when he/she makes a visit to your loved one? Does the hospice staff get your LO up and going in the morning? Shower, dress, eat? These are some of the touchstones of a good agency.

I changed agencies because my wife was getting excellent care. Sound odd? Her care mgr was excellent, alway kept me informed and spent time with me when I visited. The mgr changed agencies and I followed her. Compassionate care continued. One always has the right to change agencies.

I think some people wait too long to hire hospice. I say it's never too early. There are many different hospice companies in my town and the families I talk to have always had high praise for them. I feel sadly for those who have had such negative experiences.

There are always going to be the people whose personality isn't suited to the profession or who carry on working despite burn out or who have personal issues that are distracting them from doing what they should. I imagine it's like everything else in healthcare, you need to be your own advocate and although trust is essential it should never be without limits.

This post came in time for me, having just heard those words just a few days ago, that "hospice kills". That disturbed me, because I didn't have much experience with anyone in hospice for a length of time. However, when my husband was in assisted living (for only less than 2 months), he fell several times, and each time ended up in the hospital. Once, after discharged from hospital, he insisted in walking with walker to the bathroom despite Depends, and didn't make it to the commode--he fell, again, face forward, knees straight, and hurt his eye on the ceramic tile floor with his walker under him. I was not able to hold him back or push him away from the wall or floor. Another ER trip, then admittance. After 5-day stay, his AL nurse requested he be placed in hospice upon discharge from hospital. Hospice took care of him, bringing in a bed that lowered to the floor, and other equipment for his room, and after showering he had several strokes, and passed in the next hour, from about the 4th stroke of the morning.
Since I had watched hospice set up his room, then taking care of him in shower, to the bed, fixing him up, and so on, I never gave it a thought that Hospice killed him. I was watching them making his room safe, taking care of him as they tried to towel him after a shower, then having several strokes while in wheelchair and then the bed. I don't believe they gave him any medication, but maybe it was too soon after his return from the hospital, for any morphine, or any other medication. But, I had never heard anyone ever say the words, "hospice kills".

Then, not 2 weeks ago, I called my friend's daughter and asked how her (87 yr old) Mom was, at the time, going into nursing home from acute care, with tubes in several places, rectal, ureter, and heart. The daughter was distraught, not wanting to pull tubes out, but not wanting her mom to suffer either. From her description of the condition, it seemed, the mother was on last hours as well. I asked if she could be put on hospice, as it sounded like it, and the daughter said, no, hospice kills people. I never heard this or read about "hospice kills" ever, so wondering, do other people believe this? Hard to imagine.
Having said all this, and wondering, I know of a neighbor whose daughter was caregiver, had hospice care several times a week for 5 years. That doesn't sound like "hospice kills".

Notgoodenouch - Thank you for your excellent post. Without medical training/experience a person probably will not understand fully just what they are seeing. And it is so true: I have known people who will always answer "I'm fine" no matter how ill they are. I don't really know why. Also, waiting too long to utilize hospice and finding that loved one has passed "too quickly" because in fact they were very near death when they began hospice. I remember my grandfather joining the family for breakfast and dying an hour later. How could someone so "with it that morning" just die? Probably a final rally. But it sure is hard for us laypeople to understand clearly what we are seeing.

I admit that I'm perplexed when I read that family members are angry that their LO died after they went on hospice. The goal is a death without pain and suffering. Not to extend life. At least, that was my understanding. When someone is in bad shape, terminally ill, etc. the goal is to keep them as comfortable as possible, until they pass away.

My experience with hospice has been excellent so far. We were told that my LO was near death several times before she went on hospice... she has been end stage for a long time. Now, she's at the very end of final stage.... bedbound, not able to move her body, can't speak, can't focus, sleeps most of the time, double incontinent, 70 pounds, ... 7(f) for a while. She's been on hospice for over 2 years! They monitor her for signs of pain. I have asked them multiple times to treat her with morphine if there is any chance she is in pain. So far, they haven't. She gets tylenol. They assure me that they will provide her morphine if there is any sign she needs it. Maybe, this hospice is different than most.

I think that the thing that made me write this post was the recent post by someone who moved their elder into hospice, was talking and visiting with them, and had a nurse come in and medicate. They asked what it was and were told Morphine and Ativan. They said there was no pain and agitation. Recently we had another OP tell a somewhat similar story.
This has not been my experience of hospice. I will say my bro came home on hospice to his ALF and was gone in three days, but he KNEW he was returning to die, and so did I, and he WANTED to be "snowed" as he said. And so did I. Did he pass a day earlier than he would have? Perhaps. But he was dying.
I wonder if it is that family is not questioning, not understanding what hospice is. Because to me, they are still the miracle that I saw come to us in my own time in nursing. I literally moved from a time where patients screamed in agony with our being told it was too early for more medication, to a time when pain was the main concern. Thank goodness.
The answers here confirm to me what I have always believed. No one knows more I would think than those of us on Aging Care who are helping our loved ones in this final passage in their lives.
I have seen people die in days. I have seen people go past 6 months to be renewed another 6 months. And I BELIEVE in Hospice. I am not negating anyone else's questions or beliefs, but I dread the day we lose hospice. It was once even better I think, without the limits of two RN visits for 1/2 hour each for whatever that insurance coverages demand. It was more loose as to who was there and how often, and even better than it is now, imho. But thank goodness we have it.

My understanding of Hospice is it allows a natural death with the least amount of pain and suffering. Morphine, which is usually administered toward the end, does suppress breathing but it eases the pain of death.

I was nearby when Hospice cared for my sweet MIL. Their assistance was needed only for a few days; less than a week. They were kind, supportive, a literal Godsend, visiting daily, giving personal care to MIL, giving family instruction on how to care for MIL, signs to watch for, and what to expect. I do not believe they did anything to hastened my MIL's passing, but simply made her more comfortable as she passed. They were wonderful.

The reason that 'people die in 2 days" is because families and doctors don't place a LO there sooner! Hospice is a place for the DYING, not minutes from death.
This has been an ongoing problem for decades here in the states. So, instead of the medical community acknowledging that a person is dying, can no longer find any more tests to do, they ADDED a new level of compassion: palliative care units. This prolongs the time until a LO can be moved to Hospice care, with by and large is the BEST care for someone who is dying....not only for the patient but for the whole family.
Deal with the Hospice of today!

A few years back I went to an interesting ‘end of life’ seminar that was held at nearby church.

The priest that led it is fabulous. He also happens to be a psychiatrist who wore his doctor’s attire that evening instead of his religious vestments.

He said that he wanted to be heard from a medical point of view rather than a religious standpoint.

Later on, he welcomed questions and answers about hospice and personal religious beliefs and church teachings.

He was a very good speaker. He made wonderful observations, saying that he witnessed death over and over as a medical professional and as a spiritual adviser if the person requested spiritual guidance. He was the hospital chaplain.

He never pushed religious beliefs on anyone. He is open minded and fairly liberal for a priest. I actually like him a lot. He is compassionate. He is very intelligent. He has a great sense of humor.

Priests go to school for eight years. They get a degree in philosophy and theology. He went to a university additional years to become a psychiatrist.

He said that he always recommends to become best friends with the nurses because they are the patient’s best friend.

He said that even though he is a doctor that he much prefers the personality of nurses over doctors. He also said that nurses do most of the ‘hands on’ care.

This priest is a humble man. He also stated that even though the church is pro-life, the church’s teachings doesn’t prohibit a living will or a person’s right to die free from pain and with dignity.

He said the church does not expect anyone to be a martyr like the early saints.

He went on to say that a person should do extensive research on the hospice organization that they choose because there are differences. He was not promoting the Catholic hospice organization and said it is a personal choice for everyone.

Overall, I learned a lot from the seminar and my own experience with having hospice for my brother. He received excellent care. My mom is receiving hospice and she is satisfied too.

I would like to add that if a person is not satisfied with their organization that they should feel free to switch to another hospice organization.

I admire Elizabeth K Ross. We have learned so much from her experiences.