Hospice... Dislike! Stories Please Share

Updated on April 30, 2012
K.B. asks from San Diego, CA
18 answers

my grandfather , who was in hospice for three weeks, passed away last week. I am having a hard time accepting that hopsice was there to comfort him because I strongly believe hospice did the opposite. Has anyone felt like this after a relative or someone close to you dies after being with hospice??? My grandfather was fine before hospice came into his life, i believe he would still be here had it not been for hospice. It saddens me. Yes, my grandpa had so many problems but he was still eating and moving a little, as soon as hospice stepped in, it was like he suddenly got too weak and tired.

If you have any hospice stories, good or bad, please share. One time When we wanted to take my grandpa to the hospital one of the nurses gave a speech and convinced the whole family it was a bad idea, honestly... what's it to them. why are they all so desperate to keep patients in hospice

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answers from Chicago on

Typically those that do not understand the point/job of hospice care workers feel they are the bad guys. Most hospice workers know that to many they will be perceived as the bad guy but they are only doing what the patient said they wanted. My grandmother and grandmother in law both had WONDERFUL hospice care. The first time my GMIL went in to hospice care they were able to get her off of hospice and she lived another 4 months - but honestly they were not good happy months in my opinion. Hospice follows out the instructions and they are there to make the process of the body's shut down less painful, at least in my experience. These two women were both ready to go, hospice made it more bearable for all.

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answers from Bellingham on

If it's any comfort, your grandfather probably went into hospice just as he needed them most. Hospice is a service that is there at the most difficult time in people's lives, when emotions are flying and may be directed at anyone or anything. I know that hospice are genuinely there to care and assist in such a hard time. The individuals who work for hospice really do care, and your grandfather would have been treated with dignity, respect and love. I'm so sorry for your loss.

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answers from Dallas on

Please accept my condolences on your loss.
I am a hospice volunteer. I have seen how it helps patients and their families in so many ways.
Your grandfather's last days may have been worse without hospice there.
Hospice services should be available to your family for the next year. They are still there for you to help. Please contact their grief counselor or pastor. If there really was a problem, they need to know about.

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answers from Charlotte on

My condolences for the loss of your grandfather.

I want to tell you that a year from now, you will be able to see things more clearly (if you want to) than you are able to a week after your grandfather's death. I have a feeling that you have not lost many other family members or friends. The older you get, the more you will understand how quickly things turn sour when our organs stop working right. It's like a pebble rolling down a hill, gaining speed and eventually becoming a boulder that crashes us. Hospitals use all kinds of methods to try to keep people alive, including breathing tubes, needles, invasive procedures, etc. They are painful and may keep someone "hanging on" for longer, but there is no quality of life and no coming back from it. Many people do NOT want to live like that, K.. They want to be at home with family and friends and pass away with what THEY consider to be dignity and comfort. That is where pallative care comes in, which is what Hospice provides. And as you understand that, you will begin to appreciate what pallative care provided your grandfather with.

After being in critical care for several weeks, they moved my dad to the hospice unit and took him off all that stuff they had him on, except for the pain medicine. To our great surprise, he was able to sit up on Sunday and talk a little to some people (though what he said didn't make much sense), and died two days later, unable to speak or eat. His body had been failing for weeks, and as I was traveling to get to his bedside, he passed. There was nothing they could do to help him get through this - his body was done. What they WERE able to do was keep him relatively comfortable and pain-free while waiting for him to let go.

K., the human spirit is very strong - stronger than the physical body in so many ways! Your grandfather hung on to be with his family until he couldn't any more. His strong spirit may have done what my dad's did - give him an end-of-life boost before the end. (That happens with a lot of people.) If Hospice had not been involved, you may have seen him on all kinds of machines and unable to communicate (or eat - he may have had a feeding tube). All those heavy medical interventions are painful and invasive.

The reason people involve Hospice in their care is because they cannot come back from their illness. Death is imminent, and the question is HOW they will be allowed to leave this life. So many people prefer to go at home, or in hospice centers that are more family-centered, where family can come in and be with the patient (unlike in critical care units where there aren't even phones available), without all the medical intervention.

THAT is why Hospice was involved with your grandfather. He might have been able to hang on a little longer with doctors continuing to stick "bandaids" on him, but "bandaids" don't save a patient who is dying. He chose a different way of going, and there is a lot to be said for that. One day, you may want the same thing for you.

Try to be at peace about your grandfather. It will help you all the way around, and the last thing he would want for you is to be upset about the way he chose to exit this life.

All my best,

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answers from Redding on

I'm so sorry for your loss.
However, I have a great deal of experience with Hospice and they are pretty awesome. They dedicate themselves to the choices of their patients and making them as comfortable as possible in the waning days of their lives.

I want you to know that it takes a special person to be there for end of life care. Your grandfather may have had an advance directive which clearly stated the lengths he did NOT want carried out to prolong his life.
People who are very near the end of life may brighten up a bit. In my profession, we almost can see that as a sign that they are getting ready to go. They have a few good days in which everyone should be thankful for and be present for if they can. Many families are opposed to having hospice care because it means admitting that the end of life is nearing.
I know many wonderful, compassionate and truly dedicated hospice workers who give their all to make sure that their patients are comforted and have an easy passing.
They are not all about dying.
We have clients on hospice care because family members can't keep up with the care needs. Hospice nurses can administer medicine and provide care that the family might not be able to provide.

I think you are mourning the loss of your grandfather and I can't blame you. Losing my grandfather was one of the hardest things I endured in my life.
But I also know for a fact that hospice is a wonderful resource. They are not desperate to keep people in hospice.
In a perfect world, there would be no need for Hospice and none of the workers would ever have to be strong for someone who can't be strong for themselves.
I have only heard wonderful things about Hospice to the extent that many families request memorial donations to be sent to Hospice in their loved one's names in order for them to be able to be there for someone else.

Again, I am sorry for your loss. I understand the feeling that if someone, anyone had maybe done something, he might still be here. I went through this with my own grandfather and he had DNR orders, etc in place. He wanted no heroic measures. He was ready to go when the time came.
I wasn't ready! I didn't want to lose him!
But, looking back, I'm thankful he had people who he could share his feelings with and weren't begging him to hang on. He knew when it was time to go and he had loving and caring people to support him in that.

I know nothing I've said can make you fell better because your grandpa is gone. What I can promise you, from my experience, is that Hospice isn't there to speed anything up. They are about comfort and things being as peaceful as possible.

I don't know the entire story and again, I'm sorry for your loss.

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answers from La Crosse on

Im so sorry for your loss.

We lost my grandma 3 years ago December 15. Hospice was truly a blessing for our family. They came in and helped my grandma so much. They were so caring and loving and we created such a great bond with the ones who helped her. Through her hospice care they would visit her every day. Bathed her once a week, bed bath daily. They would sit with her for how ever long she wanted them to. We had one lady who came once a week and played the harp for grandma.

We got the call that hospice said she wouldn't have more than a day or two left. The whole family was there as soon as we got the call, not all of us lived close by. She hung on for a week. That last week with grandma they came by every morning and night to check on her. Grandma could no longer talk but when they walked in her eyes lit up so much and she would smile.

One of the best memories of that horribly long hard week was the lady who played the harp. She was there every day. She had gotten to know grandma on a personal level and knew what she liked. The last day with grandma she had played all kenny rogers songs and a few spiritual songs. When she played the gambler on the harp and all of us grand kids sang it to her, my grandma smiled so big and a tears ran down her cheeks. She sat there for 3 hours with us and listened to our stories and laughed with us and played her harp. I am so thankful for that memory.

After grandma passed they spent the day with us making sure everyone was ok and our needs were being met. They stopped by every day until the funeral. Many attended the funeral and continued to come by to check on my grandpa for weeks to follow.

The lady who played the harp also played the gambler at her funeral.

My grandpa got sick ( we found out he had cancer the week before grandma died) and was in the hospital. Every one of the people that worked with grandma stopped by to see him and us. Even though they weren't "working" with grandpa they made sure we were ok. Grandpa died two days later and they were there with us and came to his funeral. They extended themselves on their own personal time to the family that lived by grandpa to make sure they were ok.

For us hospice was a God send! Im not sure how things would have played out and how we would have made it through loosing both of my grandparent 3 months apart with out them. They went above and beyond what their duties on paper was for us.

Im so sorry you weren't able to experience the same thing our family did.

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answers from New York on

I am so sorry for your recent loss.
The thing about hospice is, they are brought in for end of life issues. The person is dying, much as we may not like that or want to accept it. The decline isn't based on the start of hospice care, it's that hospice care is starting at a time when major decline is expected to begin. The hospital is for treatment and life-saving measures. Hospice patients are beyond that pointI am sorry but if hospice was called in, your grandfather was not "fine." Hospice is for people at the end of life stage, not people who are healthy and fine. . It is never easy to accept that it is time for our loved ones to go. I am sorry that you are having a difficult time with this loss. Blame does not help. Please know that the hospice staff and volunteers are highly trained, very caring and they know what they are doing. Hospice offers whole family services, including grief counselling.
Wishing you healing.

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answers from Los Angeles on

I am so sorry for your loss. {{HUGS}}

We lost my Dad Feb 17 after just 26 days of in-home hospice. He had kidney failure and leukemia. He would have been 87 years old this July had he lived. He fell 5 days before Christmas, his legs just "gave out" which we had been told would eventually happen, his body was going through so much. He was in the hospital 10 days, then 23 in a nursing home. That is where his doctors determined he had less than 6 months to live and offered hospice, there or at home. Being that he had a fear of dying in a nursing home he had been promised years ago that he could die at home so we brought him home.

He came home and it was as it had been prior to his fall in December, but he barely had the strength to stand, let alone walk, yet he forced himself to. His medications were stopped, for high blood pressure, diabetes, the leukemia, etc., as hospice is about making a person as comfortable as they can be as they are dying, not to make them better. For a person to be approved for hospice there must be a prognosis of less than 6 months, we had hoped we had closer to that than the less than 4 weeks we had, as I'm sure you did as well. Going to the hospital isn't something usually done with a person in hospice, unless the patient or the family (if in charge of the decision making at that point) wants to stop hospice and concentrate on making the patient better. Hospice and going to the hospital have different objectives.

We didn't have nurses caring for Dad, we, my family, did it. Nurses did come every 2nd or 3rd day to check on him, and bath aides came twice a week, and we could call if we had questions, but we handled his care. When he couldn't stand up from the toilet on day 10 of being home, and had to be coaxed to take two steps to his wheelchair his nurse looked him squarely in the eyes and told him that she was sorry, but for his own safety he could no longer get out of bed. He was trying to force his body to do something it could no longer physically do. He spent the rest of the day, about 12 hours, in his wheelchair, before he went to bed at 12:30 am, I'm sure because he knew once he got into bed, he would never get out of it of his own volition again.

The next day he told my sister he was "done." She knew what he meant and had "her talk" with him. She told him she loved him and that if he was ready to be done it was fine. He said he was and we could see he had resigned himself to the inevitable, something he had refused to do for 10 years of being ill. That day was the first time he ever admitted he needed something for the horrible pain he was in, and we started him on the morphine, and a few days later on anti-anxiety meds. He had dementia and thought we were keeping him prisoner by not allowing him to get out of bed, when he really was no longer capable of it physically. We changed him, bathed him, and fed him in bed from that day forward.

He had a "good" day (for him) that Super Bowl Sunday, ate ribs and sandwiches from Subway, he loved to eat so was happy, but paid for it the next couple of days. His body couldn't handle the heavy food anymore and he was horribly sick. That began his decline into withdrawal, a normal behavior of a dying person. That Friday, a week before he passed, his visiting nurse took me aside after spending a long time examining him and said she felt he would be going soon, a day, two, or more, she wasn't sure but the signs were there. He had taken to sleeping most of the time but that night he had a burst of energy and alertness and visited with grandchildren, great grandchildren and family friends, it was a blessed time for everyone, our last "good" time with him. We had him with us one week more from that night.

He knew he was loved, that we would be fine and take care of our Mom, we told him so. From that Friday on he slept most of the time, stopped eating the next Tuesday, he had lost his ability to swallow, I was told on Wednesday that he was in a coma. But he was still quite agitated, (I found out that there are different types of coma) and I had to call for a nurse twice that last week to come and assess him and make changes in his meds to keep him comfortable. Friday morning we knew he would more than likely not make it through the day, he passed that night.

Through all of this hospice was always supportive. I asked an innumerable amount of questions, especially that last week, and they never got tired of me or my family. They explained the natural progression of dying to us from the beginning so we would know what to expect. I have included a link for you to read, my Dad did everything on it as he went through the dying process, but not everyone always does them all, each person is unique in how they go through the process of dying. Perhaps your grandfather went through some of these as well. They gave us a brochure (among much more information to assist us) explaining the transition the person is making, coming to their own terms with dying and doing it, but it was all still a shock to witness it happening to our loved one. We had visits from his social worker and a chaplain that last week, along with almost daily visits by nurses. Hospice told us that they are there for us for a year after Dad's passing, for grief counseling or whatever we need, even my 3 year old grandson who I am raising if he needs therapy. We received a card signed by all who came into contact with Dad in some way through the hospice after his passing. And we just received letters telling us of a 9-week grief support group starting next month, and a candlelight ceremony set for May 9th, to honor our loved ones, patients of this particular hospice.

Hospice in our case was a good experience, Dad got to live out his wish to die at home, surrounded by family and friends. Hospice was supportive of our family and our decisions, and explained why things were done a particular way when we asked. They were there whenever we needed them, albeit when you are waiting for them to come assess someone in uncontrolled pain or anxiety the waiting is excruciating and 30 minutes seems like an eternity. They answered every question we had, referred us to what we needed, and were caring and compassionate to Dad and our family, they still are.

Hospice is a HARD job, all their patients will die. I have nothing but respect for them. Don't get me wrong, there were a couple of things i had to complain loudly about to get action, i was my Dad's advocate. But they understood my frustration and determination to do what was best for my Dad and helped me get it done.

I know you are grieving the loss of your grandfather, it is hard. I also know that it is hard to accept that he went so fast once he began hospice, as my Dad did. But, I learned that we are not in control of how and when a person dies, the individual is. He or she chooses to fight (as my Dad did for so long against all odds) and when or if to give up and allow themselves to go. I am guessing your grandfather was ready to go, though you were not ready to lose him, the same way I feel about my Dad. There is a way it naturally progresses, and when the mind and the body agree it is time, it is, it is hard for them to leave if their mind and body are not in agreement. I thought this was a little too "mystical" when I first read it, but I found it to be true a few days before Dad passed. A friend who is a nurse came to see him, he grabbed her and asked if she was here to "help guide him through the woods." When she told me this I realized he was trying to "leave". But she told me he could not go in his highly agitated state, so I quickly called to have him assessed and his anti-anxiety meds adjusted. My Dad was like your grandfather, eating and moving a little before hospice began, then seemed to suddenly got excessively weak and tired once it began. I think he just felt he could now stop pretending and give in and let go. The transition from living to dying seemed to go so quickly those 26 days, but I don't feel it was because of hospice, I believe hospice was a great comfort to him and helped him to be able to go. As physically, mentally and emotionally tiring as Dad's care was for us, especially that last week when we rarely got to sleep, had it not been for hospice I don't know how we could have done it, I can't thank them enough. Their compassion and comfort for Dad and our family helped make our loss into something we can feel positive about, as hard as it has been to go through.

I apologize for the length of this, I didn't realize my story was so long.


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answers from Washington DC on

I am sorry about your grandfather. It sounds as if you were close to him and losing him must be very difficult. I would add, to the posts below, that in your understandable grief and anger at your loss, you are blaming those who were his final caregivers. But hospice is not brought in until a patient is clearly heading for the end. The fact that he was still eating and moving somewhat, and that seemed to stop when hospice care began, does not mean that the hospice care caused him to worsen; it only means that hospice was there at the time that the inevitable finally began. It doesn't mean hospice was the cause. As for the reluctance to send him to the hospital: This was likely because the nurse knew that moving him would only cause a lot of physical and mental stress on him and would do little to prolong life at that point. The purpose of hospice is to allow people to die in their own homes or at least in a more home-like setting than a hospital, and that means not taking patients to hospital if it would only stress the patient further and would not extend life meaningfully. I know these things are hard to hear, and we all want to find reasons for the deaths of loved ones, and it's instinctive to look at the last caregivers for those reasons. These are all just explanations, of course, and don't ease the grief you are feeling, but in time maybe you will understand how hospice is solely about easing the end of life, but not about prolonging it, as much as we would want that. My mother only had a few days of hospice care at the end of her life and it at least made her more comfortable though it could do nothing else. I feel for you and know it's hard even to hear the word "hospice" because of all it means.

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answers from Washington DC on

First I want to say I am sorry for your loss. I hope that you and your family will be strong together through this time. It is never easy to loose a loved one even if you see a slow progression to a loss.

My best friend used to work for Hospice. They in no way are desparate in keeping patients in their care. They are the last resort. There had to be a reason for a hospice recommendation. They do not get involved unless medically necessary and approved by family.

My friend, she is so great with people, the sick as well as the families. The other posters have said it well, they are really there to make the remainder of that persons life comfortable. Well, as comfortable as possible. My friend has been invited to her deceased patients family events and have personally requested her for other family members in need. Their job is quite difficult. It takes a special person (In my opinion) to do that job.

I know you were looking for a different response but, I hope that some of the stories below and what I have said may bring some peace and understanding to your situation.

Take care.

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answers from Austin on

I am so sorry for the loss of your beloved Grandfather,.

Maybe you all did not understand, your grandfather was sent to hospice, because there was no more that the medical community could do. Nothing.

Hospice is only used for those that are at the very end of their lives.

Hospice only gives medications to allow the patient to die with dignity.. No tubes, no monitors. It is to make them comfortable (no pain).

Being sent to Hospice, very few, continue to live much longer.

My business partner best friend died a few months ago. She was very ill and had a seizure. she had been told she had 3 months to live, but her body, just could not take anymore Cancer treatments. 1 week later she
was in intensive care. she would wake up and be alert and speak, but the doctor told us, there was nothing else they could do.

And so she was sent to hospice so she could have the best care for her. No more medications, no loud hospital sounds. Hospice was beautiful. All of her friends and family came to see her, spend as much time with her as they wanted. We all visited, the care that was given was amazing. We opened the doors to a beautiful patio, fresh air. We held a rosary in her room with everyone invited. People came and sang to her.

They also spoke with us at each stage about what was happening.
My beautiful friend was allowed to pick when she died. It was the ONLY time her mother spent the night with her alone. Up until then, her nieces, her sisters had stayed, but that night her mother, alone was there. My friend died with her mother right there, just the 2 of them. No she was not conscious, but I know she was aware.

My grandmother died at hospice with me and my daughter. it was the first time the entire family had left Hospice in days. I had been telling my grandmother to go when she was ready, we were all going to take care of each other. It was her choice. No she was not conscious, but I know she was aware.

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answers from Houston on

I'm so sorry for your loss. My mother is in hospice right now. She is in a nursing home and they come every day for a couple of hours.

I believe that hospice is a wonderful help to those who are dying and their families. Its so hard being the one left behind. I don't think the nurses care one way or the other about "keeping them in hospice", I believe what they were telling ya'll was that there was nothing more to do in regards to his medical care.

Right now, you are mourning your loss and rightly so. However, remember in a couple of months you might see things a little different. Again, I'm so sorry for your loss. Hugs to you and your family.

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answers from Pittsburgh on

I'm sorry about your grandfather. :(
When my stepfather decided to stop chemo, he received hospice care at home.
The hospice nurses were wonderful throughout the entire experience.
Nothing (at all!) negative to report here....they were angels.

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answers from Washington DC on

i'm so sorry you lost your grandfather, and sorry you're not at peace with the way he went. big hugs to you.
it sounds to me as if you might be displacing your unhappiness. it's very easy to associate those who were there at the end with CAUSING the end, but it's really very very unlikely. hospice doesn't get called in until the end is near. naturally this can be tricky to judge (they got summoned 2 or 3 times for my grandmother but she fought 'em off!) so one has to be understanding of that. but they don't cause the end. their role, and it's a difficult one which requires a very special type of strength to manage, is to help the dying patient go as easily as possible.
i doubt the nurse was desperate to keep your grandfather in hospice from any sort of nefarious motive. my suspicion is that she felt he was almost done, and wanted to keep him as quiet and peaceful as possible, not put him through the discomfort and rigors of going back to the hospital, an atmosphere most of us feel is not where we want to go. i'm sorry she upset the family, but i'm sure she was advocating for him.
it's really very, very unlikely that your grandfather would still be here had hospice not been around. that's just not what they do.

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answers from New York on

I'm sorry for your loss. While I did not have any close relatives that were in hospice, I did hear a lot of talk of it while my own grandfather was in his last stages of life. He wanted to stay at home, so our family did that. Hospice is there for a person in their last stages of life. It's not really a nursing home, which provide services to prolong life. In hospice care, they are there to care and comfort for a terminally ill patient.


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answers from St. Louis on

Are you sure you aren't mis-attributing the events. In general hospice is meant to be a place to die. You cannot stay in a hospital because there is nothing they can do and you cannot go home because you need too much care.

So yeah people don't improve in hospice. My mom was there for two weeks before she died. Being in the hospice spared my dad the death watch. Even with her there he stayed there every waking hour hoping she would come out of it. I wonder if my dad would have made it if she was at home, I know he wouldn't have slept.

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answers from Los Angeles on

So sorry for your loss.
My mother was in hospice care during the last months of her life. We had a wonderful experience with them. I honestly feel like the social worker that was assigned to my mom was amazing. It's a super long story so I wont go into it, but she basically started the paperwork to say in my moms mental capacity she was unable to make legal decisions. That started a whole series of events that needed to happen. The nurses, the aides, the chaplin's, the volunteer's over the phone, were all great.
I am sorry you had a bad experience with them. I think it's a natural reaction to want to take our loved one's to the hospital to get them help, but like many other posters said sometimes there's nothing more that can help them. I hope you find peace soon.
Again I am sorry for your loss. Many blessings to your family during this time.

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answers from Washington DC on

I'm sorry for the loss of your grandfather. You may want to find out what they can offer you - grief counseling, for example, now that he is gone.

Hospice did wonderful things for my aunt and a couple of friends. Sometimes hospice works with the family in their own home and sometimes they work through their own care facility. One of our friends moved to a hospice facility so his wife wouldn't have to think of his death every time she came home, but so he could be in a less sterile setting than the hospital.

Hospice is end of life care. It's not to prolong life. When you go to hospice, your health is at a point where you aren't going to recover. Hospice is there to make death more comfortable. For example, if you are in pain from cancer, they can provide pain management. It may have been that by that time your grandfather was tired. Maybe he'd conveyed to the nurse that he was ready and did not want to go back to the hospital. Sometimes people hold on and hold on and when they get to hospice they can finally accept the end of their life and let go. They know that someone will help them be comfortable. Someone will hold their wife's/child's/husband's hand when they die. It can be the comfort they need to pass peacefully.

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