Follow
Share
Read More
This discussion has been closed for comment. Start a New Discussion.
Katie that was a horrible way for your sister to die and as a retired hospice nurse I have been in attendance several times when it happens.
There really was nothing that could have been done to stop the bleeding but she could have been sedated if she and the family wished.
When admitted to hospice the caregivers are instructed to call the hospice nurse first and not take the patient to the ER.
That being said the RN may decide that the patient should go to the hospital for many reasons but not for life saving measures.
I agree with your description of the negligence of the staff assigned to your sister, there is no excuse for that kind of behavior and you should write a letter of complaint to the Board of Directors of that hospice. In the hospice i worked for that would have been a fireing situation. No notice no nothing just get your stuff and get out.
Don't know if they were overworked, underfunded or short staffed or anything else.

As a side note hospice nurses earn roughly 1/2 the salary of their counterparts. not that matters to you.

Be at peace you have lost your dear sister so do your grieving and remember anger is part of the grieving process
(3)
Report

Yes. Hospice does hasten death. I watched it happen to my mother in law. She was given Ativan and morphine rapid-fire. When I asked questions I was brushed off. Afterwards I realized she had been euthanized. A friend who works as an occupational therapist told me hospice nurses are called The Angels of Death.
(3)
Report

I need advice on hospice. Back story. Aug 2017 my mom had major emergency surgery for perforated ulcer. She survived but they found cancer. Anyhow 2 weeks ago she went in to have 70%of one of the tumors removed. Found it had spread. They put in nephrostomy tube in. A week after she had slowed her eating and drinking. The tube then got clogged went to er they found more cancer in different spots. They admitted her didnt fix tube for 24 hours then the next day. Now she hadnt slept for 3days and meds i thought was loopy. They said she was dying and wont last a month. Nobody says what happened why so fast? I get her home yesterday she slept and woke up coherent. Yes sleeping alot. But noone said what is stopping that makes her dying.so stopping fluids except when she wakes. And they said give her more and more meds. Am i helping her die? She was eating a little but always drinking liite or enough before going in. Im sorry if this is muddled but i dont know how this happened.
(0)
Report

Imhere, I'm so sorry that you're going through this and don't have a clear idea of what's happening.

Is mom on hospice? Can you call the 24 hour hospice line and talk to a nurse about your concerns?

What kind of cancer does mom have? Did they tell you what stage, and where it's spread to?

Are the meds for pain? Cancer pain, especially the cancer has spread to the bones, is excruciating. Morphine will help control the pain.

You're not killing your mom, the dosages are not high enough for that.  The morphine is for pain relief and to ease breathing difficulties.
(5)
Report

Thank you for responding. Im sorry im very off and ramble fast. She was diagnosed with bladder cancer first. Then a few months back they said it had spread to vagina. Well it hasnt it was just how it was on ct scan. Next has tumor mostly removed and they said in ct scan could see lung cancer but needed another image was scheduled for july 11. Then the nephrostomy tube became clogged. Granted she had a back ache and some times not great at walking. She was drinking ensure and eating small amounts several times a day and was drinking. Some days not a great amount but not less than i on some days. Anyhow, we went to er for the. Tube. They do a ct scan and say cancer in now in bones. Spine and hip specifically. They admitted her, never touched tube for an entire 24+ hours. I kept asking everyone because i was afraid the kidney would stop. It was clogged. Nothing happened the next day i said ok well you're keeping her drugged but she hasn't slept in 3 days so lets get her home. Next morning dr. Says she dying maybe not today but she wont make her follow up. Im like shocked because before going there and less than 2 weeks before there was nothing on that mid section ct scan that we didn't know. Anyway skip to them rushing to get hospice which i appreciate and the nurses have been great and informative. But they have suggested i keep giving her meds even if not fully awake. I sort of disagree with this because she has pain when it hits and not all the time. They are only giving her oxy 5mg. But she is with it when she wakes and was awake this am for a few hrs. Before saying her back hurt. The nurse said the signs of talking to noone and grabbing at things that arent there are only after her meds and have decreased since we've been home. I was worried that they read those signs as death when it may have been meds.
(1)
Report

Imehere, I think you are right, the reaching out and talking to no-one can definitely be a sign of the meds, they definitely snow cause some confusion, but that's OK, at least the meds keeps her pain level in check, and bone pain can be terrible, I know, as we had our Mom on Hospice for 5 months, and her bone pain was awful!

I believe that the Nurses are wanting to to medicate your Mom around the clock, so the meds don't wear of, and she then has break-through pain, and I tend to agree with them. 5mg of Morphine every 4-6 hours should not be enough to make her "out of it", but only enough to keep some of the pain at bay. At some point, it may be necessary to give her even more pain meds, but that will become evident as time goes by.

Having gone through the Hospice experience with 2 of our parents, my Mom, and more recently my FIL, whom my husband and I did the Hospice care in our home, for the final 9 weeks of his life, and he passed here with us, last September.

Towards his final 2 weeks, our Hospice Dr gave us orders to give him more and more pain meds until they were as needed, along with meds for agitation too, as he had a lung (cancer) mass, and metastases to his rib bones, very painful!

I really would not worry about her being sleepy or asleep, it definitely beats her being in pain, and it allows you to have some rest from the exhausting work that it takes to care for someone 24/7, and who is in so much pain.

Remember, some Cancers can spread really fast, the patient often Is so tired, so leave them to rest. There is So much to do in caring for someone on Hospice. The meal preparations and serving, making sure they are drinking enough, bathing, laundry, entertaining, visitors, medical staff visits, CHARTING!!!, my Least favorite thing to do!

Do what you can to rest as often as possible, it's exhaustive work! If you can, enlist others to help, like grocery shopping, patient care and entertaining, tidying your home, dishes, laundry, some meal prep, but do be careful to have your Mom's meds put away in a safe place, even the emergency med pack that Hospice gives you, as you don't want those high powered meds to get into the wrong hands, especially children! You've got to rest wherever you can!
Near the end, you might need someone to stay with you some nights, if your Mom is anything like mine, who needed things during the night time.

I hope that things go go smoothly for you, but too often, unexpected things do come up, that throw you for a loop, bowel problems were a big issue for both of our parents, and you need to be flexible and calm. Remember, your Mom is now nearing the end of her life, and You need to keep a cool head. More then anything, she doesn't want you to be frazzled, so You take care!
(6)
Report

A horrifying YES. I am still so traumatized I can barely speak of it. Jayne
(2)
Report

Is the hospice nurse supposed to record all medications that he/she gives to a patient?
(0)
Report

Yes, PamB. Basic.
(1)
Report

I feel they are rushing a friends death. They were admitted to hospice and could talk, smile and reason and by morning they were non responsive. Hospice decided to start them on haldol for agitation but the fact is they did not have any. I’m not sure how many doses but when they gave them a dose and they were out of it I asked Why would you give them something if they are already knocked out? The response was it’s given on a schedule. I asked them to no longer administer the drug and they switched to morphine. I believe haldol sent them on a downward spiral. Now going on day 4 with a continuous morphine drip. I don’t understand why the rush to use these drugs. The patient never used any pain meds in the hospital prior to a hospice house.
(2)
Report

Hi I have always wondered how my Dad coulfd be sitting up in bed writting a list of shopping one day then after being tranfered to a Hospice he died the next day with a shocked expresstion on his face yes he had Stomach Cancer but his passing was very sudden and one of the young members of staff told me when I had asked why he had a shocked look on his face she replied he kept shouting to staff I know what you are doing to me when he was given medication that day and then he died at the time I was so overwelmed with greif at losing my lovely natured Dad that it was years later I keep thinking that the Staff gave him too high a dose of medication? and now im hearing that hospitals are now being investigated for the very same thing? I wouldnt have wanted my Dad to suffer in pain though I did think he died too soon the day he got to Hospice?
(2)
Report

I know that any Staff who care for patients are stretched and overworked and wonderful my Mum was a Nurse I have heard that a legal high dose of medication can kill a weak ill person and as there are cut backs and staff shortages this could have happend to my Dad before he had Cancer he was 6feet4 strapping man who had mostly served in the Army Born in 1935 onced he had Cancer he shrunk very thin therefor weak it torments my thoughts and feeling every day that the thought of him being snubed out quikly as if he was a Burden ?
(1)
Report

My dad is at the end of the trail. When he is not on Ativan, he is certainly more clear headed and responsive. But when we are not at his bedside, he attempts to get out of his bed when it is blatantly obvious, he has no ability to do so. I wan't him to survive until my sister arrives in two days. But I acknowledge that my desires are selfish. What is best for him is most important. He doesn't look like he's enjoying the end of the ride. He doesn't appear to be in pain either when we are there. But he is still breathing with and without Ativan. But he looks like he enjoys it more off Ativan when we are there. The responsibility is on us to be there when he is not on Ativan. He is not the only patient they have to serve. They've done great otherwise.
(0)
Report

Having a difficult time dealing with watching dad losing weight and on the morphine regiment all of a sudden. No purée as of two days ago. Questioning myself as to whether I am causing him more pain by not feeding him and squirting water in his mouth through a syringe a little at a time. Having difficulty writing this right now. The only thing that I can try to use to make myself feel better about this whole thing is that he is 94 and we just found out a month ago that he has 4 cancer masses. Colon, lung, spine, and brain. Both mom and dad are hospice; at home with me. I don’t think I am stressing too much. Had mom for about a year with dementia; then a month ago I brought my dad home from a 10 day hospital stay at which time I found out he had cancer. I don’t know what I am asking except, I don’t like watching and helping a “comfort death”.
(2)
Report

Do not use hospice or those morphine drugs!! My grandmother just passed away last week. She was 91, had no cancer, her kidneys were failing. Rushed her to the hospital one night. Next day doctor was pressuring my grandmother to decide whether she wanted to be revived if anything was to happen. My grandmother was so confused because she didn't feel like she was ready to go. She was talking and waiting to feel better and got home. For some reason that same day the family was convinced to put her on hospice. Biggest mistake we made. At home she was prescribed morphine, tramadol, and another drug, which were given to her every hour. Sometimes doubling the doses. All this medicine had her asleep, not able to move nor talk, barely open her eyes. She was definitely not in a comfort zone, how hospice makes it seem. She was only with us for 3 days since we took her home from the hospital. I asked myself the same question about morphine and hospice. Did that rush my grandmothers death ? I believe it did. My advice is about hospice and those drugs. They literally rushed my grandmothers death! And I really wish there could be something i could do to stop the doctors from prescribing these drugs to elderly patients who don't need them!!!
(2)
Report

What are the eye drops for in the hospice comfort box?
(0)
Report

Pepsee read the bottle, but they may be ATROPINE 1%. There's should be clear instructions, but to my knowledge (and Hospice experience), it is use to dry up respiratory secretions in the throat, that some people get at the end of life, also known as "death rattle".  If I am correct,  and it is ATROPINE eye drops, they will actually be used under the tongue,  also known as sublingualy. 

Thankfully, we never had to use them, but I would definitely recommend that you speak with your Hospice Nurse, and review All of the medications, and their usages, should you ever need to use them.
(2)
Report

You are one smart cookie Stacey, that's what it is. 😊

The nurse will be here twice a week going forward. On her first two visits, she never mentioned the eye drops. She explained the box contained, morphine, Adivan, oral and rectal anti nausea meds.

I bet she didn't want to say that in front of Mom, who was already weepy and softly crying. (She feels better finally)

I meant to ask her, but the first week has been a head spinning flurry of activity. Thank you Stace.... you're awesome *as usual*👍🌹
(2)
Report

Yes, Hospice did rush my mother's death. I wrote a book about it. http://www.WhiIHateHospice.com. Not a feel bad book. Easy to read. About family, community and my fight with Hospice over the misuse of drugs and the medical industry's ignorance of health.
(4)
Report

Hi Andrew,
Since I don't want to read a whole book, how about the short version? 😊
(1)
Report

It is the middle of the night here and I am sitting next to my mother wondering if Hospice is giving her too much medication. I visited my Mom two weeks ago and when I returned, the doctors and hospital had given up on her and sent her to Hospice. She has Ovarian Cancer and has a blockage in her intestines. They say the cancer is all over her stomach cavity and they cannot put a tube in her stomach. She and I were eating sandwiches and pasta together two weeks ago and now she is here. She said to me when I arrived, that she feels like she is going backwards very quickly in this place. She knew/knows the cancer is terminal and that this end is near but to be at the hospital one day getting treatment to prolong your life, and then the next day in Hospice being administered morphine and Ativan around the clock is shocking. She is a fighter and she knew what would happen when she got here. She asked me two weeks ago that when the time came, not to bring her to Hospice too quickly. She knew it already then..They have been pushing a catheter and she has refused. She is so frail and thin but insists on getting up to go to the bathroom. She got up one night on her own and tried to walk to the door and fell backwards and hit her head. I think they are reducing her fluids now just so she won't go pee and so that this process accelerates. The night nurse gave me a hard time at 5am in the morning and said that by not having a catheter in her, this was hard on her nurses. Really? I helped her all by myself out of her bed because no one would respond the the alarm to come and help her sit on the pot. She has ripped out the tubes out of her nose that went into her stomach. Would Hospice have done that? No. Nothing has happened since she has ripped this tubes out. My Mom refuses to sign the DNR too. She is headstrong and she seems to be the only one fighting for her "right time" to die. Even I am confused. Hospice, the nurses and doctors keep saying that she is dying and she needs to sign the DNR, she needs to take the meds and they keep giving her less IV. Isn't Hospice about how she wants to die? I don't get it? Isn't this about her wishes? Even if it is the hard way? How did that get lost along the way? If she wants to fight it till the end, then let her fight it. Why are we slowly pushing her another direction? Or, am I confused? The longer I sit here day and night, I believe that medicine is indeed an art as much as it is a science. It seems every nurse has a different spin and different experience which influences what happens. They can tell me whatever about the amounts of morphine or ativan or fluids and I really don't have enough experience to understand.. Even the doctors, they all say things differently. And, the nurses are supposed to stop by every hour... its been three hours and counting - not one has stopped by. Let me say one thing for sure, I am not against Hospice. They helped me with my father's death 25 years ago and I know they help thousands of people. But today, with much older and wiser eyes, and my mother who is a fighter and now lying next to me, I just think it is so important for these organizations to make sure they understand the wishes of the person they are treating. The doctor pulled me out this morning at 6am and asked my what my goals were. What a question!! Ask her!! Take her off of ativan, and give her some fluids and trust me, she will be crystal clear with you. This is not about me. She knows she is being starved to death. This is about my dearest mother..
(3)
Report

Hugs, Fighter. Just posting quickly so you know someone is listening.
(0)
Report

The catheter. Give that night nurse a slap from me; but actually the valid point is that being moved and turned to be changed is also hard on your mother. A catheter (counterintuitively) would save her having to go through that routine, which is probably very uncomfortable for her now.
(0)
Report

The hospital would like a nice tidy DNR on their files. Of course they would. They don't need to harass your mother about it, though - if she's not up to it and it becomes a real question, they can exercise some clinical judgement instead.
(0)
Report

I'm sure you know much more about it than I do, but then you must be aware of how notoriously aggressive ovarian cancer is? The rate of deterioration must be horrible for you, no time to adjust.

Please keep posting. I also wondered if you could ask for help from the hospital or hospice chaplain? Chaplains do moral support as well as actual prayer, if you're not in the mood to pray.
(3)
Report

Aw Fighter, I'm so sorry you and Mom are going through this heartbreaking time.

I can't help but ask who signed Mom into hospice's care?
(2)
Report

I know these hospice people are murderers. My dad was put in a foster home one night and given morphine at bedtime and wham bam my mom a widow the next morning.

My ex husbands father passed this morning under the same circumstances. These men didn’t have a lot of time left, but were rushed into the hereafter Faster than hell by these EVIL hospice members. Damn it.

This HAS to be stopped...

Get rid of HOSPICE now!!!
(3)
Report

Thank you Countrymouse and Pepsee for your kind words and support. I have decided to call the night nurses the "kill crew". But I want to be fair. The day nurse today was great. She gave Mom a shower, drained her stomach, adjusted her in her bed, etc. (Was that because I had a crying fit and have spoken to two social workers already about the pressure of the DNR? the Catheter?) But the night nurses are really something else. Who are they accountable to? Who watches them? Seriously? What are the checks and balances here? No one comes around here at night to see what is happening. My understanding is that they are supposed to check the patients every hour. They have not checked on their own accord. They drug them then leave. The dying are still living.. I have to film it. Seriously. I may film what happens when they come into the room tomorrow night. Nightline or some program like that has to read all these 5 years of posts. Mom woke up moaning at 2am and wanted to be turned because she had pain in her side. I buzzed the nurse. The nurse's aide (assistant) came in and I asked if she could help me turn my Mom on her side. Mom had already grabbed the railing and turned herself partially on her side. The nurse's aide asked her if she was in pain and my Mom said yes, her side. Sure enough, the morphine pump was pushed and she walked out and told the RN that my Mom was asking for pain medication. Wait? Isn't morphine pain medication? Next thing I know the RN walks in with Ativan and Zofran and I asked her what is was she was giving her. I didn't argue because they don't speak to me, greet me or acknowledge me being in the room. So she administered it to my Mom, left her twisted in the bed even though I asked the RN again to help move her onto her side. But no - she ignored me. Mom went to sleep.. I couldn't communicate with her anymore to find out what was bothering her. During the day, she begs me for water. "Please, I want water" she says. "I want a big glass of water. Please". We are now going on day 13 with no food. Mom is a fighter. She refuses the catheter because it equals death to her and she is not ready to give it up. She will fight it and this place till the end. If she can get up, even if she is in terrible pain, she will. How did we get to Hospice you ask? I live in another country on assignment, and when my Mom was violently throwing up in the hospital, after two years of non-stop chemo, they told her, this is it - your next stop is Hospice. I was not there. So Mom signed herself in. She is 81 years old, lived by herself, had chemo for two and a half years non-stop and refused to give up; and didn't want to go to Hospice. I think she is here because she ultimately didn't want to burden us? I don't know. I don't know what happened the moment it was signed. I do know that she asked me last month not to send her to Hospice too early when the time was near. "They will put you in your grave" she indicated at the time. I thought at that time - "there you go again Mom - always an opinion about something. Always fighting a cause. Aren't those Hospice people really good people?" With age and experience does come wisdom. That will haunt me.. The kill crew is on tomorrow night again.. My mother would not want me to be hurtful or hateful to anyone, and I do not want to be despite me calling the night crew a rude name. But for sure, someone has to be accountable for these desperate people who are still living in each one of these rooms, who deserve dignity, their wishes to be heard and understood individually, differently, and who should be attended to as patients with specific needs and desires. Thank goodness there are places like this for certain circumstances, but on the other hand, these places must be held accountable.
(1)
Report

Fighter, I am seeing red on your behalf.

Please call your hospice provider and tell them exactly what you have told us. If you can't speak coherently when doing that, do you have a family member, friend or neighbour who could help you? Have you discussed this issue with the day shift?

Night rotas are hard on people physically (especially if they're 'moonlighting' of course, but that's another question); and there is a sense for them of having to grit your teeth and get the job done competently on your own; and so we make allowances. But all the same. There should not be any real difference in behaviour towards patients or their loved ones, and what you describe is *abysmal.*
(0)
Report

My mother died of sepsis, secondary to acute urinary tract infection because a home hospice provider refused to have a urinalysis done and treat her, even after several appeals to them that we thought she had a UTI. They assured us that her symptoms were not UTI related. We would have never known had we not pulled the plug on hospice and sent her to the hospital, but it was unfortunately too late.    
(2)
Report

This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter