Did Hospice rush your loved ones death?

Like everything else, not all hospice is the same. I am having at home hospice for my mother. Rather than hallucinating she is sleeping and dreaming. Last February I admitted her to the hospice facility for five days for Respite. Because they could not or would not give her the naturopathic and homeopathic remedies I give her, she returned with more decline than I expected. Thankfully, she returned almost to her baseline. About to where I'd expect her to be given her consistant but slow decline. They can't or won't give patients anything not in their formulary.

Her home based care is superb, however.

Hi PCVS, we get the best doctors, plumbers and everything else it seems by word of mouth. So could you give us the name of your in house hospice? What is the town for their main address etc. ,etc.. will they also work in a facility? Just like you need the best roofer for your house we can start helping each other by identifying the best hospice facility.

LifelineWV, i live with the guilt everyday for not doing just what you did. Luckly, you will avoid the hell that I am living. God bless you.

126Cher, I am using The Connecticut Hospice. They are non-profit and the first hospice in the USA. Their main address is in Branford CT. I could be wrong, but I think they are just here in CT. Yes, they do work in facilities. There is also hospice from Masonicare and the Fransiscan order that I have heard good things about. Not having used them, I don't know anything first hand.

Avoid Vitas. I did not like how the interacted with me. They are for profit and I have heard unhappy reviews.

Thanks PCVS for responding. Was smart of you to mention "Avoid Vitas" because we all need which ones to avoid as which ones are good. I live in New Jersey so if any one knows of good and bad in NJ please post. Did not realize that some were profit vs. Non profit. also good advice that you gave. We used Grace when my Dad died on Nov. 2, 2015 and I do believe that he might be alive today if we used some other hospice or not let the doctors convince me to put him in hospice. Somehow they put him in a coma and I still have nightmares.
So I think that we are going on the right foot by looking and screening them out or in. Thanks again!!

Ditto for NY. Good/bad hospices? And Lifeline, I think your thinking on this is 100% right. We should not put our loved on in hospice unless they are in excruciating pain or at death's door. I've had 3 loved ones in hospice. In all cases, they didn't last a week. They Ativan and morphine-d them into a coma, provided no IV for fluids, and then put a sign on the wall that said "unable to eat or drink." Unable?! Yeah, it's kind of hard to eat and drink when they drug you into a coma....

Dogbone, not all hospice places are good or bad. People who don't feel comfortable about what happened and the way it happened have a right to say they are uncomfortable. No one should have absolute power over life and death without being open to questioning. If another of my loved ones end up going into it, I will be asking for clear expectations and purpose. I will never let embarassment or the desire not to be a troublemaker get between my concern for what's happening to my loved one and my speaking or asking questions. It's hospice, not God.

Rosie, I also feel your pain. My Dad was diagnosed with 2 liver tumors a few weeks before his death. I have 3 half siblings and this was my biological father. My mother and her son decided against me for the biopsy because their belief was it will make the cancer spread. Well, it would have gave concrete evidence of many things--it would have given us a time length of living, told us if it was primary liver cancer or if he had it elsewhere and important for me as his only child to see if it was something I have too watch out for. Two years ago he had fallen and I wanted to take him to Mayo, but mom wouldn't have it. So we continued on unknowingly for two years wondering why he was falling, getting up in the night thinking it is morning. Also, noticed he stopped conversing and joking. December of 2015 I took away the statin drug because he looked into my eyes and said very clearly "I ache all over". He was sleeping more and eating less. Took him to neurologist for his bent neck that appeared after the fall and thought it strange he took 5vials of blood said he wanted to check his liver. Still no mention in January about cancer. As March approached the pain in his right rib must have been excruciating and still after a doctor visit and few weeks later an emergency visit they tell us a bruised rib. Yep, it will take six weeks to heal they said. I felt so bad for my dad when they told him mid April he had a tumor. I was always by myself during these appointments and it was the coldest feeling. My Dad just replied well that's it. I wonder if he understood because he didn't say anymore about it--no questions--nothing. Because of pain he was admitted to the hospital for 3 days and they wanted us to admit him to the nursing home. This all happened so fast and I had still no idea how long he had. I wanted to take Dad home once more because I felt he did not have a chance to say goodbye to a wonderful home he provided for all of us the last 54 years. I could only manage 6 days of care. The Meds (fetanol and morphine) scared me to administer. The fetanol patch alone made him unable to swallow. He could not take much for nutrition and other complications. Mom said she promised he wouldn't go to a nursing home. She is in a wheelchair and her other children were unable to do around the clock care so it was up to me. From the Tuesday I brought him home to Sunday was a steady decline even before the heavy pain killers. The family was all there when I declared we have to make a decision today because hospice only had 1 room available in the vicinity where family could be with him around the clock. I was greatful that Dad was never alone--as the whole thing was breaking me apart--I was tired and stressed and caring for mom who is disabled.
Dad lasted from the Sunday we took him to hospice care to the following Saturday. I woke up on Saturday morning at 7 am and prayed to who ever would listen to let my Dad go. By 7:14 am he was released.
Tomorrow it will be only 3 months since his passing. Yesterday mom blamed me for his death because I took him to hospice care even though the whole family was there. So this is what I meant when I feel your pain. Her son (the golden child) who never does anything wrong wanted to take my Dad out of hospice to his home. Mom thinks he would be alive today. Her rational part of thinking is gone. Even though I could not get the biopsy I did get the afp test that was 6000 highly elevated and from what I have read a positive indicator of cancer. The tumors were sticking up through his gown and very hard--how can you argue that he would still be alive if he went to her son's house? There is only a 17% chance of survival with liver cancer and we have no idea if it was primary. The home health nurse said she thought it strange she had a lot of patients in the area and since then a nearby small village in the last 2 years has had 6 cancer deaths 3 that were pancrease in just 2 years and all were different in ages and some did not smoke. Village of about 20 people.
Mom as others have claimed hospice dehydrates, starves and over medicates, but it is the process for most. The feeding and fluids prolong and make worse the agony--it is the living that have to quit being so selfish because they are left behind. My mom wanted to go with him. They say grieving brings anger and then the blaming of others. We are the battering rams. It makes it hard on me because her golden son is alienating me now and getting my mom the same way-- hard because I am the POA and caregiver and how do I do that if the client is not communicating. Now I have to deal with a toxic family that some are only looking out for financial gain and that makes a person sick.

On July 28th 2016 my dad was taken by ambulance to the hospital. He was in severe pain and fell. He could not get up, but refused to let us call the ambulance. After about a half hour he finally agreed to go tho the hospital. They ran some test and put him on morphine for the pain. The morphine did not seem to ease any pain or make him sleepy. By the end of the third day at the hospital, my dad was very confused and angry and kept trying to get out of bed and go home. One minute he knew where he was and the next he would be saying and doing things that made no sense. He was seeing people that were not there. He was trying to eat anything he could reach for. He was reaching for things that were not there. He was seeing lights that were not on. He managed to get his wedding ring off and swallowed it. This then caused him to have a minor surgery to remove it. The thing is he was mentally okay when he went in to the hospital. By the fourth day he was still trying to get home and still very confused and very angry and still in severe pain. At this point we decided to take him home, and decided to get home care health. August 1st 2016 we were making the arrangements to take him home. We got a phone call the morning of August 2nd 2016 from the hospital. He had passed away around 5:30am. Tests showed that my dad did have cancer. His rib bones were starting to crumble. The cancer was eating away at his ribs. The ex ray from 10 months before did not show this. My concern is when he went into the hospital, he did have cancer and he was in severe pain, but he was mentally okay. The morphine did not relax him, but did the complete opposite. The doctors suggested radiation, but we were so upset by his actions, we decided to bring him home. The doctors did not seem too concerned about his actions which I thought was unusual. They never said whether he only had days to live. So we do not know whether the cancer took his life, or was it the out of control behavior. My father died very confused, angry and in much pain at the age of 84. He was at the hospital without any family around. I feel the doctors should have suggested taking him home if they felt he only had days to live. Maybe if were had got him home earlier and into his own bed where he felt comfortable, he would of calmed down and died peacefully at home. We will never know.

Pamala, about 90% of elders who goes into the hospital have what is called "delirium"... about 30% of young people have the same thing after they have surgery.... this is all very common. Patients tend to get confused where they are, why they are there, etc.

My Mother, after having a serious head trauma fall at home, while in the hospital went into delirium and it was so difficult to watch, we were trying to hold down her legs and arms because she was kicking with her legs and with her arms trying to reach up. A doctor come in and gave her something to calm her down.

So, unless your Dad was heavily sedated, chances were high he would go through delirium.

Get a malpractice attorney Pamala1989. Too much was right that went wrong behind closed doors IMO. My poor angelic mother suffered the same ironic fate of appearing to recover and becoming terminal within the hospital .

They give them the morphine to labor their respiratory system until they actually die of respiratory failure that was on my mother's death certificate IMO.

My mother's death was a cover-up for malpractice as her left thumb was gong to have to be amputated due to cutting off circulation with a oxygen monitor for her left thumb.

Momlover, keeping someone off Hospice won't stop the cancer, sorry. Morphine helps with the breathing, and relieves the agony of your ribs breaking one by one. Yes my friend had liver cancer and at the end the liver was hard, swelling and breaking her ribs. Morphine was absolutely needed then.

Ty Nasmir.

We put my mother on hospice today..she has Alzheimer's and in early stage of 7th..she has high blood pressure,fluid around her brain..after reading this post..I hope I didnot make a wrong decision..concern daughter..

Motherof5, I'm so sorry that you are at this turning point in your mother's illness. When we came to the point of thinking about Hospice/Palliative care, we framed it not as "rushing mom's death", but not "delaying" her death. If your mom is suffering, i think that's a big consideration.

Oh lawdy this is exactly why I get so bloody mad at people who talk about hospices having killed their loved ones.

Hospice - their role is to make the transition from life to death as painless as is possible for the patient. It focuses on providing patients with relief from the symptoms, pain, physical stress, and mental stress of a serious illness. It is not the role of the hospice to keep someone alive by contravening their wishes and adhering to those of the family. So my advice is this

Get an advanced care plan for yourselves now. You can then dictate whatever happens to you and your family wont have to have any input unless you dictate that they can. I have one in place and my children will have absolutely no input into it because I don't want them keeping me alive unnecessarily longer than my natural body has determined. They can have financial poa but not my health - I determine that one. I have very clear views on natural life and natural death and while I accept some meds are necessary to keep me alive on a day to day basis I.E. Diuretics or insulin or warfarin depending on what was wrong with me I do object to having my heart restarted. It is a very personal opinion for all of us and we very often never discuss it. Man up people and discuss it with your loved ones now

Examples of what you may want to include in your advance care plan are:

Anything that is important to you or that you are worried about.

Any details of people that should be asked about your care if you are not able to make a decision for yourself, or the details of any lasting power of attorney.

Anything that concerns you about your health now or in the future.

How you would like to be cared for if it becomes difficult to care for yourself.

What your priorities are in regard to your future care.

Where would you prefer to be cared for if you became very ill or you were at the end of your life?

Anything that is important to you.

Letting people know

It is useful to involve professionals and families in completing an advance care plan and it is useful to give a copy of your wishes to somebody else, such as a close family member. Remember to keep your own copy safe and show it to relevant professionals and family members.

I'm sure that there are some bad hospices but I think an issue that is overlooked is that people go into hospice much later than they should have. Hospice is for death expected in 6 or less months but many don't enter until the week before death. I think that could add to the feelings that hospice killed them because everything happens so fast that you don't have time to come to terms. The lady I care for is nearly a year into hospice, the 6 months isn't a hard and fast rule as long as they have some decline. Anyway, I'd say that what they said at the beginning has held true, they don't do anything to hasten or slow down death. They just provide comfort via oxygen, pain meds, etc. they definitely aren't doing anything to kill her. I'm not really sure what benefits they have from speeding up death because they make quite a bit of money for very little work (imo). I can understand the difficulty in accepting that you can't give loved ones their regular meds or call an ambulance, etc. it would be hard for me to do.

Hannan, you made an excellent point as some patients are placed on Hospice only days prior to passing, thus it could feel like death was rushed, when in fact it wasn't.

My Mom [98] who had a serious head injury due to a fall and could no longer communicate or think for herself, was placed on Hospice probably 4 weeks prior. With my Mom's condition, I was really surprised she had lived as long as she had as her body was shutting down on its own. I was ready for her to transition as I had studied up on her condition and knew there was no reversal. My Dad was surprised when Mom passed but he was in denial, he thought she would be coming home, which was wishful thinking :(

Veronica91 commented on Mar 31, 2015
"LPNs should not be handling the narcotic doses." In reading through some of the posts, I found this and had to comment. Veronica, I've been (California's and Texas' version of an LPN) an LVN (V for vocational) for 37 years. When I was in school, the LVN's had more bedside and patient care nursing hours logged than the RN's (who focused on administrative nursing). We were taught the same nursing calculations to give meds and to regulate drip counts in IV bottles. (Wow, that shows my age, since all IV's are put on pumps (machines that count drops/minute) now!) The state has recognized that we have successfully completed and graduated from an LVN program and, if we pass the state test, we are able to give medicines within our scope of practice. Usually LVN's do not administer IV meds but there are exceptions. The "N" in my title stands for nurse. I have been successfully administering all kinds of meds, eye drops, ear drops, intranets all meds, skin creams, oral liquids/pills, subcutaneous injections, intramuscular injections, intradermal injections and even rectal meds. There is no reason why an LVN/LPN would not or should not be able to do what the state has licensed him/ her to do. I'm sorry you have that bias but your opinion is not from fact. I will agree that there are good and bad nurses, both LVN's and RN's. I've worked with a few RN's that I wondered how they passed the "boards" (state test). Please don't judge all of us if you've had a bad experience with one.

Now, for the comment on hospice "killing" your loved ones. I am a part time hospice nurse (the other time Home Health). Often, the patient's doctor will make a recommendation for hospice if (s)he feels that they probably won't be alive in 6 months. There are criteria that the patient has to meet (from Medicare) to be admitted to or be kept on hospice service. These rules are explained to the patient (if cognizant) and family, along with the whole admission process, when the patient is admitted to service. If the patient (or POA, if patient is unable to speak for themselves) wants any "life saving or prolonging measures", they will not be a candidate for hospice. Usually, the patient is in a "terminal" state, unable to recover from illness (metastatic cancer, end stage Parkinson's, end stage dementia etc.), also, end stage breathing problems (COPD, lung cancer, emphysema) or they have suffered health issues from which recovery is not thought possible. Hospice is a free service through Medicare, the patient/ family is never charged. The patient (or POA) must agree to not take the patient to the hospital for life saving treatment. There ARE allowable visits but for "facilitating comfort" only. Many family members, not directly involved, that have their loved one receiving hospice care, often aren't informed of these rules by the other care-taking family members. (we can't talk to ALL of the family members) and they don't understand the reason/rules for hospice. I recently had an 89 year old grandmother as my patient, who was dying, and she had a visit from her adult granddaughter from another country. The young woman
was asking if grandma had eaten breakfast. I said "No, she's not able to eat anymore." She seemed confused and asked why not. I tried to gently explain that her grandma was not going to be able to eat, drink, etc. because of her "condition". The house was full of family and I hope one of them was able to break the news to her. This is an example of poor family communication. Grandma passed away 6 hours later, comfortably. I'm sure there are good hospices and not so good but before you judge us, please talk with the patient or POA about what THEY agreed on with the hospice care. My company has a service that most other hospice's don't called "Continous Care". If the family is emotionally falling apart, if the caregivers are exhausted or if the patient is in unrelenting pain or vomiting, we send 24 hour nurses to care for the patient (and family) in their home. MOST people don't want their loved ones to suffer in pain or discomfort. We give Morphine for that, usually in a round the clock basis like every 4 hours. It keeps them comfortable. There is more Morphine for "breakthrough" pain that we give if the patient asks for it or if we notice signs of pain, (frowning, moaning, rubbing a particular area frequently, increased heart rate, moving back and forth, etc.) The families need to come to grips with the fact that their loved one won't have too much time in life left. Sometimes patients get somewhat better and we need to discharge them from hospice because they no longer meet Medicare guidelines. I had a patient the other day with intractable vomiting. We got it under control and she was discharged 24 hours later. Her caregiver was very thankful she could call us anytime.
Also, most family members have no idea about death or what stage their loved one is in. They may think they'll have Dad for another month but the nurse can tell you it'll be a matter of hours. Many are in denial. That's where we're referred to as "killers". Obviously they have never seen a patient "go sour", their condition can change in the blink of an eye. Please don't condemn the professionals trying to help your family member depart this earth with the least amount of pain and suffering possible. And read all the literature that your loved one or family caregiver has been given. It explains it all.

To thankless job wow what you said makes since..thanks..my mom is in stage 7 the doctor want me to put on hospice..so I did..they are taking her off the Alzheimer's meds slowly..she seems to be doing good..everything that you said in your post was so helpfully and made me understand a little more..I know there no way of knowing how long stage 7 last..but thanks for the comments

Dear Mother of 5,
Thanks. If I can enlighten one person to the truth, then I'm happy. There is so much misinformation out there. Please feel free to contact me, or your hospice office for any questions you have. Really, any time of the day or night. If you are well informed then we can focus our attention on your mom to help her be comfortable. I'm sorry you have to be in this situation. My mom is in Stage 6, so it's coming for us one of these days too. Lord help us all.

Absolutely cannot Nasmir and is why it is critical to have an end of life plan that covers as many eventualities as you can. I went through this with Dad who had terminal and metastasised cancers. The day before he died I was told to prepare for him to come home. He was sat up, quite lively in between the morphine was a low dose. He went to sleep about 11 and I went home to sort out a bring home plan. By 3 it was done and back we went to the hospital - he was cheerful and looked forward to seeing his beloved cats. He had tea and was really quite jubilant he was coming home then in the space of less than 10 minutes he went from that positive place to terrifyingly in pain. Nothing was given to him other than what had been given to him previously. Nothing was not given that should have been there ...I know.

The doctor was called immediately and it was clear that whatever they had been doing to help him sustain life (NOTE SUSTAIN NOT PROLONG) had suddenly and without notice stopped working. His lungs were filling from the drip which he had to have to combat the dehydration from the morphine which he had to have for the pain. It is cyclical at that point and there is no point continuing a treatment that will prolong what would eventually be a painful ending. He deserved to die peacefully, free of pain. It was explained to me that an increase in morphine would hasten death, but to deny him would caused him pain....tell me what option is there? In MY BOOK and I am being very specific here I mean my opinion for my father not for anyone else, I did the best and worst thing. I agreed to the morphine and in doing so I hastened his death which I have to live with. Could I have lived with letting such a very very special man die in agony - absolutely not - I would rather kill myself than do that. So let hospices do their work accept that it is the final path and that people do have a right to be free of pain and to die with dignity not distorted in agony.

Phoenix, there was a Scottish doctor on the radio not long ago discussing this issue who made a point that I think should be dwelt on more. He said: "if we had a drug that relieved pain as effectively without hastening death, we'd use that instead. But we haven't." The intention *matters*. I don't see you had a choice.

Couldn't agree more CM and I know that what I did was right for us ...but there again the niggle sits there from time to time. But others would and have argued that that type of medicating hastens a death, that the hospice killed their loved one. It drives me nuts that people don't understand the role of hospice care/palliative care/ end of life care. Yes it would be lovely if everyone passed peacefully in their sleep but then the hunger mongers would say that they were suffocated or some such nonsense.

The role of everyone involved in care of their loved one is to monitor what happens. If the care is bad speak out shout out yell it from the rooftops till someone hears you....just don't whine after the event because you could and should have done something at the timeshare had 2 serious falls while in hospital and I went straight to the sister and told her that this was not acceptable. She hadn't realised that Mum was such a high risk because the first fall had not been documented properly

Result within 5 minutes the bed had been lowered, crash mats all around in case she thought she could vault the safety bars again! and a person engaged to cover the hours when I wasn't there and I was doing 16 hour days to make sure she was safe. 2 Days later the UTI dissipated andepsis improved and it wasn't needed but I saw that as my role in her hospital care. I don't just take it for granted all will be well.

The sister asked if I wanted to make the complaint formal and I asked what outcome was as it stood. She had reprimanded two members of staff one for not recording and the other for not informing me and they both had to undergo further training. Good enough for me.

should have read at the time. Mother had 2 serious falls.....GIVE US AN EDIT BUTTON

I've been through end of life with both of my parents, a very simular experience to many of you, and Never a good feeling when all you really want is your Most Wonderful and Loving parents alive and free from pain, but that wasn't to be according to God, or just plain biologically. Death was imminent no matter what we, or the Dr's or Nurses could do, so the best thing that we as their adult children, who knew our parents and their wishes best, was to at the very least, leave our selfishness on the table, and agree to having the Medical professionals treat their pain and discomfort, period! All 6 of us agreed, no questions that this was best, even if it might hasten their deaths by minutes, by God they would be comfortable and pain free to the best of their abilities. I know that we made the best decision, the biggest and hardest decision of our lives, but we are at peace with it. Never did we ever feel that the professionals coerced us in any way, and neither of my parents were ever without one of us there with them at all times, and both times when they did pass, all 6 of us were able to get back to the hospital to be there with them as they did pass away.
To me, there was of course great sadness, but also a sort of feeling that they were there bringing us into the world, and we were there seeing to them as they left this world, it just seemed appropriate, maybe a Religion thing. Maybe just having us all together and able to comfort one another, made that difference. I do realize that this is not always the case, and I don't believe people should feel bad or guilt for not being there, maybe it just worked out that way for our family. Losing a LO is difficult and sad, but death comes on its own terms and sometimes unexpectedly.

I am so sorry that some people have a hard time finding peace with this. The medical system is not perfect, it is not always clear or simple to put a finger on specifics, but know that hospice is only ever meant to comfort the patient, and thier LO's.

To thankless job..thanks so much for your thoughtful words..so now hospice is saying that my moms got vascular dementia..also plus Alzheimer's..what can I expect now..