Did Hospice rush your loved ones death?

Edward I understand how u feel. Dad died of ct 15, his cancer had spread every where. He was in pain all the time, couldn't eat, refused drink anything cause everything kept coming up, I went from putting 5 ensures to 1 a day in his feeding tube cause nothing stayed down. Then he got really sick back to er we went, which had become a every other day thing, his liver was failing and kidneys, they said they could do surgery I said no, they had already Done surgery on the kidney putting a stint in so it would drain the bile, so so much more happened, they gave dad six mos to live, I was speechless by the time he got on hospice I was relieved they controlled his pain, and his agitation. He had got to the point he was not himself anymore. Many on herebsay hospice bad, how? They help my dad transition peacefully unaware of the suffering his body was enduring as it broke down. I love my dad 100 times infinity!! But I was glad god called him home because his suffering was horrible. Why do you down hospice? Why would you want to see ur family member suffer, yes maybe they would stay longer if they hadn't been on hospice, but how long? How much pain, suffeeing ? I love dad and would have loved for him to be here with me longer, but not likebthat . dad quality of life was gone, he asked to be comfortable on his last days so I honored his wishes, thanks hospice for helping me do so. I feel lost now that dad is gone, but he is no longer suffering

Pain management is part of the services offered to hospice patients. They are not admitted just for pain management they must have a terminal illness with a life expectancy of 6 months or less. I am also in NYS

Mas, what was your dad's pain from? What doctor certified him for Hospice? I have never heard of Hospice for pain management. Palliative care, perhaps, but not Hospice. What state are you in? I'm in NY, as is Pam, my mother is in Connecticut. I also have some experience with other relatives in Florida.

Pam the Hospice nurse expressly told me that they could manage my fathers pain, he had no terminal illness, nothing was certified that he was expected to die within six months. Maybe your state Hospice is different?? I realize that my Dad was sick and I realize that he may very well have inevitably wound up in this same place. My Dad was in a lot of pain and he was giving up so this seemed to be the answer, but as soon as his pain was gone he was fine so you have to understand watching him go from fine to gone in three days was extremely hard.

Dogabone have you gone through this experience? I hope you have, otherwise you have no room to judge. I assume everyones experience is different. I am quite sure that Hospice does help SOME people and sometimes they just don't.

Yes Maggie Marshall I as well wish I would have dealt with more ER visits than with Hospice. They say first off you have to meet a certain criteria to STAY in Hospice, and gave me examples of many people who had to leave because they no longer needed pain medication (likely story) I foolishly believed this and was under the impression they were going to send my father out!

Jeannie I am so glad to hear a positive response from you. My impression as a retired hospice nurse is that the care patients recieve seems to allow them to live a little longer and everything possible is done to allow them to reach their goals rather than speed their demise. It is a very emotional time for famillies and making a hospice decision can be very hard because it includes accepting the fact that death is close. This causes much stress on the caregivers and they can feel they have made the wrong decision.It is important to realize that if you feel hospice is giving the wrong treatment you are perfectly free to have your loved one discharged call 911 and go to the hospital. There is no penalty for doing this. Hospice personel will advise they are not the health care police, the final decision always rests with the patient and caregivers.

maseiloj, I am very sorry about your father's death, and also very sorry that end-of-life decisions are still distressing you. I wish you peace.

Hospice is not a pain management program, except for those who are dying. Sometimes the evaluation is wrong about how close to death the person is, but the person must meet criteria that suggest death is likely within 6 months for the person to be even accepted. You apparently didn't agree with this prognosis for your father, but that is what the medical professionals determined.

You are absolutely right that a person should not go into hospice expecting to recover. Certainly that happens. It happened to my mother. It actually happens a lot. But hospice is for those who are expected to die soon. If you haven't accepted this prognosis, it is really best, in my opinion, not to use hospice at all.

My husband died on hospice. I hope that when my mother's time comes she will again be on hospice to ease the way. (I hope to have hospice for my own exit.) I do not believe that being on hospice shortens one's life. In my family's experience, it lessens the suffering.

I couldn't have done it without hospice, they kept dad comfortable. His cancer had reached his entire body, bones also. I thought hospice was giving him to much medicine so I cut back on it to keep him a list alert. Worst mistake ever!! The pain came with a vengeance and dad was so irritated and frowning from pain, he kept asking pointing to the medicine, I gave him wat they said to give him after about 15 mins he was resting again, I was so relieved!! So thanks hospice for helping me take care my dad by keeping his pain at bay and not suffering as he ended his journey here

Nobody goes to Hospice just for pain. The MD has to certify and submit test results that prove the patient is expected to die from ----------- within 6 months.
For my daughter, there was very little pain. She had Leukemia. The bone marrow transplant took, but it did not defeat the Leukemia.
On a Thursday she was sitting up and eating, but weak. She died on Saturday night. I administered her meds myself, and I know it was not enough to kill, just enough for comfort and peace. Please don't blame Hospice. It was his time.

YES Hospice rushed my Dad's death indeed. I thought my Dad had a real chance to leave Hospice, however he was only there 5 days before he passed. On the third day my Dad shared a beer with my brother and held normal conversation, two days later he was dead. My Dad was going to Hospice for pain management. The first thing they told me when we arrived was that a lot of people think that they are there for exactly that reason, to "hasten death", but that is not true, they are only there to make your family member comfortable. My Dad went in Friday and I stayed all day and on Saturday as well, I worked Sunday so six other family members visited with my Dad and then I came and stayed the night. We had little bits of conversations here and there but he was uncomfortable in his bed, so he would sit up and hang his legs off of the side for the majority of the night, and since I was there this was acceptable and the night nurses did not say anything about it at all, everything was fine, he only received medication once during the night. Well, new morning shift nurse walked in, didn't talk to me or assess my dad, just said here's your medication which I responded he hasn't been in any pain, which she then responded well it's just his regularly scheduled medication. It seems to me if you're there for pain management you would be regularly assessed and asked if you have any pain, this is not the way it happens. My Dads pain was under control and he didn't need near as much any longer, I guess they didn't see it that way. I spoke to my Dad and said goodbye I would be back I'm just going home to shower and change. When I arrived back to Hospice they had a couch backed up against the side of his bed and then the recliner at the end of his bed. They came right in the room after me and moved everything away. They told me that he had been restless and they didn't want him to fall out of bed, the doctor changed his medication giving him Ativan timed. Well let me tell you, I never spoke to my Dad again. From that point on all he did was sleep. The following day in the afternoon he passed. I wish I had been there, I wish I had not left, but I did not think I was leaving my dad in the hands of somebody who would hasten his death because he was restless and wanted to sit up. It's not like he was out of control, he was begging to set up because his rear and his back were hurting. If I had known this is the way his care in Hospice would progress, I would have never taken him there. The only guilt I feel is for bringing him there in the first place. I have a new outlook on Hospice altogether. If you feel your loved one has a chance to recover and leave Hospice, don't go in the first place. If you want to spend quality time with your loved one, don't go to Hospice. In my experience I can say that if you have a terminally ill family member that is in unbearable pain and does not want live anymore, that's what Hospice is for. Unfortunately people will probably only come upon this post after-the-fact. I am sure that everybody's experience is different and every Hospice is different. Unfortunately my local Hospice was the death of my dad.

Edward, hospice groups can help you. If they do not have grief support groups themselves, they would certainly help you find one. Many churches also have freif support groups. Callin your agency on aging may also be of help. They are knowledgeable ofnso many resources. Find groups that share similar experiences, so you do not feel so alone.

I don't mean to suggest that 4 months is "too long" to grieve. But not being able to go out and breaking down three times a day sounds debilitating and not good for you on so many levels. There is help out there, my friend. Please call someone tomorrow. And let us know how it goes with you.

Dear Edward, where do you live? Getting help for prolonged grief is not something that's going to be looked on badly. I'm curious why you think that. One thought is to contact the funeral home from which your mom was buried and find out if they sponsor grief groups. Your GP can prescribe antidepressants without referring you out to someone in the mental health profession.

Thanks you jessiebelle and veronica. I appreciate your words & advice.

Thanks gladimere and ba8alou for your responses. It all happened around 4 months ago.I was lucky enough to be with her for the last year and half, the decisions were left to me and now i realise i couldnt have had the right state of mind to make those decisions. I know everyone loves there mum; she really was the most selfless & generous person ive ever known, on occasion risking her life to save others and a completely devoted mother. Im trying to keep going, as you say b8alou she wouldnt have wanted me to be like this. At the moment working or even leaving my room is difficult, breaking down three times a day and hoping every night i would have a vivid dream about her without realising its dream. I have considered professional help but don't really want to see my GP or having anything about mental health on my medical file. Even though i feel there's nothing that can be said because its over. I'll probably end up looking some alternative to GP. (I appreciate you all listening, its not something i am capable with discussing with anyone i know.).

I am so sorry grieving your mother's death is giving you so much pain. Stop blaming yourself. Once cancer gets into the liver death is inevitable. it may have been possible to slow it down a little but at what cost and loss of quality of life. Your mother was only 64 and you were not expecting her to pass so soon. I think you are suffering from a very deep depression and which not knowing your health history would suggest has been brought on by you nother's death and your percieved mistakes in supervising her treatment.
Death from liver disease does come quickly when the time comes and many people feel more could have been done for their loved ones. It is also common for patients to refuse medications at the end of life. Giving it by injection probably would not have been significant because an equivalent dose usually less than the oral dose would have been ordered. Once morphine has been started it is usually not stopped because of withdrawal possibilities.
Edward I don't think Maggie was suggesting you should have sent Mom to the ER from my understanding she was saying you could have just sent her in and let the Drs do everything and anything to "save' her life. Is that what you have wanted to see. She had a DNR so obviously did not want to be recusitated by people junping on her chest, breaking ribs, intubating her and maintaining her on a vent for whatever time she had left. It would not affect whatever disease was killing her liver.
Many people share your views about the use of morphine at the end of life including many nurses. All I can tell you is that I would gratefully accept as much morphine or the equivalent was offered if I had end stage liver disease. A few people are genuinely allergic to morphine but your mom had been taking it for some time so that can not have caused her death. In these cases there are equally effecive alternatives to use. Please be comforted that your cared enough for your mother to want to do the best you could to save her but she had already decided to be a DNR so her wishes were followed. If you continue to feel so hopeless and helpless please seek some treatment. Does not mean you are mentally ill or will have to take pills for the rest of your life just that this is an acute situation for you and if it was a broken leg you would not think of refusing a splint to assist with healing. Blessings

Edward, it may be that pain was the thing keeping your mother alive. One thing I've learned through reading hospice materials is that fighting pain can be a thing that keeps our loved one from crossing over. I wonder if when the morphine helped with the pain, your mother was able to see her way to the other side. Your mother was very ill, and the cancer she had was a very difficult one to rid the body of. I hope that you can reach the point where you see that this could have been a gift to her so she could stop fighting the pain.

One of the things I think many of us struggle with is not wanting to give up. I've come to the conclusion that I have a 100% fatal condition, life. If the natural, unaided conclusion is within a 6 month window, it's ok if I pass a few days,weeks, months earlier if we are fighting my pain and death is a side effect. My mthr is on the short road now, and the last thing I want her do to is suffer. Yes, she could have had many more years without her cancer and complications, but she won't. I'd rather her have good life satisfaction now on hospice, with all their kindness and medicines, than to suffer through round after round of chemo and the side effects. She lobbied her government for hospice access in the 70's and now she is the happy beneficiary of their work. They are keeping her pain free, even with broken bones (which are healing well). She is so happy with her hospice care, and I am as well. If she passes in the night because her body reacts poorly to a pain drug, that is ok - she will pass peacefully, not fighting and afraid.

Edward, I'm so sorry for the loss of your dear Mother. Please, oh please stop beating yourself up. You did the best you knew how with the knowledge that you had at the time. Your mom had advanced cancer and was in pain. Now she's at peace, and would want you to be as well. If you find yourself unable to move on, if you find yourself unable to concentrate at work or enjoy other activities, it's time to seek out some professional advice, which can work worlds of good. Be well, my friend.

Edward, how recently did your Mom pass? It is natural to think more should have/could have been done. Mom was helped to make the best possible decisions with the information available. Liquid vs oral morphine I imagine there could be differences in a body reaction to it but I do not know anything about that. I know this is hard for you. I can tell you, I am 60, that I would not want to be rescesitated if I were as sick as your mother is. The most compassionate thing to do is to let her go.

yes maggie marshal, i wish i did send her to the ER instead. Another big mistake. It was the district nurse that insisted the hospice and a few days after arriving it was over.

I would very much appreciate some advice, I'm really at the end of my tether. I made so many mistakes and just cant take it anymore.

My mother who was 64yrs, stage iv liver & bone. One of the reasons it went to stage 4 so quickly was because the doctor stopped her annual scans after 5 years of her last diagnosis (stage 2) . That was my first big mistake, for not talking to her in enough detail to have known that earlier (and the fact that i could have afforded private healthcare for her and they would have continued the annual scans and would have caught the cancer earlier.

Second mistake, after taking Taxotere chemo that only partially worked the Oncologist suggested Xeloda. We decided not to do that because of here sever stomach pains we were concerned that the Xeloda tablet would have given her more pain. Big mistake as I know am pretty sure that the stomach pain was due to constipation due to liquid morphine.

So, after loosing alot of weight the oncologist said no more treatment. She went to the hospice but the doctor expected her to be out in a few days, she was dehydrated and hadnt been eating but he gave an IV and expected her to leave after some nourishment.

Final big mistake, she reached the point where she would not or could not take the oral morphine (she turned her head away) the nurse then suggested giving her an injection of morphine. 10- 15 minutes later her breathing started to increase rapidly and then she stopped breathing. The nurses would not revive her as someone else in the family agreed with the do not resuscitate. I asked the hospice doctor if the morphine hurried her passing. He said he hadnt come across of that happening before. I then look online and it seems many people have had a similar experience.

I know this world can be a horrible place and we have been relatively lucky in life but i just cant handle this. I can no longer do anything and know that the mistakes and selfishness has partially lead to this situation.

Id really appreciate any thoughts on the morphine part (bearing in mind she was on oral morphine for a while but had never had an injection of morphine before).
Appreciate any thoughts.

If you want them to go kicking and screaming and flailing at the inevitable -- afraid and conscious and in pain, just keep them at home . . . keep rushing them to the ER for life-saving treatment and call it a day.

To posters who are questioning hospice actions and motives when caring for their DYING loved ones, I can only shake my head.

If people don't want their dying loved ones shepherded gently and safely into "that good night," why are they putting them in a hospice in the first place?

I totally understand where your coming from. Hopsice did the same with my mother 2 months ago, and I have trouble sleeping at night as the entire situation continues to play on my mind on how quickly her life ended. She too had liver cancer metastasized from her breast, but she walked into the hospital coherent with vomitting and diarrhea from her chemotherapy drugs. She had a very small brain lesion. I have spoken with several nurses since this all happened, who don't get what happened either. They have asked why she wasn't given a steriod for edema and hydration because of the vomitting and diarrhea. Why not try and stop the chemo drugs, hydrate her and wait to see how her body responds instead of putting her into a coma with the use of ativan, morphine and did I mention 2 antipsyhotic drugs. Our family is heart sick over allowing her to go this way. We feel hospice pushed us in this direction by administering the adivan and morphine. Its a shame and I know this will be a lifelong struggle to overcome the loss of our dear mother this way.

Wish I knew about Hospice when Dad had liver cancer. That was tough. He was tough, he took nothing, He tried different things, chemo, homeopathic treatments...You don't come back from liver cancer. A friend told me that. Dad was a health nut. Glad you found hospice, glad hospice helped your family out. Suffering is not fun, and with cancer you do suffer. You make peace, if you want to,... Making peace and let bygones be bygones...Amen

KatieKat brings up a a good point in her post that helped me. When we signed up for hospice care, I thought that meant that no heroic measures would be taken to keep my mom artificially alive, like intubation, compressions, shocks, or feeding tubes. She never quite agreed to be a DNR but agreed she didn't want those measures taken. So it came as a shock to learn, belatedly, that signing hospice care in effect was consigning her to the earliest death possible. While I didn't want to keep her artificially alive I didn't want to artificially induce death either. I know lots of other people out there are going to be under the same misunderstanding and I want to do whatever I can to help them make informed decision. In our efforts to comfort those who, like me, remain troubled by our hospice decision, we must not try to silence our pain with platitudes. By sharing our pain we are hoping others will be spared it.

I think we all probably really agree here. This is just one of the most difficult situations we will ever face, and we all struggle with it. So, we all do the very best we can with the information we have and are given. So, no one should ever feel guilty. We should be content knowing we were all there for the person we loved. I think we all agree with that and can live at peace with that.

Katie-
You did the right thing, and hopefully you will come to recognize that. You honored Mom's wishes, and did what was required. That takes a strong person and a tremendous amount of courage. You did good!