Did Hospice rush your loved ones death?

I see so many people going into Hospice whose families just don't listen to what the guidelines are. They panic and call 911 and rush off to the ER but never call the hospice nurse. They have a mental block, they cannot accept or deal with the reality of an approaching death. I have been through Hospice with my daughter. It's not easy. But the rush to the ER doesn't defeat death, it only feeds the panic.

Yes, I have the feeling your dad's death was hastened ! Absolutely
Go to facebook, look at Elder Abuse Gerald's Story. That is my dad.
Also go to google and google Ireland Dallas youtube channel for videos.
Contact me through my father's facebook page if you need to talk. I'm sorry about your father

Thanks, JeanetteB, my parents were on Hospice only somewhat over a year. overlapping about 1/2 year, with 2 different hospice Cos. coming to the house. Dad passed last, -- in 2005. Now I’m the one inline for Elder-care.
Mom was almost blind, had so many health problems when I brought them here, she needed a neurologist, orthopedist, cardiologist, + of course a PCP. Both needed new health Ins. and travel health coverage during the trip here from Canada. I managed all by myself the 1st year, then with County help, without Hospice, till after her hip fracture in 2003.
She was constantly breaking bones due to the severe osteoporosis, which had it's root in WW2, after which there was a silent epidemic of folks with parathyroid problems, due to the lack of calcium/Vit-D rich foods.... ('...she gave her milk/meat/cheese ration to me thinking that elementary school kids need it more.') ... had no garden to grow dark-greens in the city of Pforzheim, and in a way it was good that in Feb.45 it was bombed to blitherines, unfortunately killed @ 17,000 folks in one night, including a cousin... we escaped injured, and a week later made it to my grandparent's village... a full support farm , which from then on eliminated hunger. But apparently the damage to mother's parathyroid gland was done, causing a lifetime of problems. The last hip-fracture made her totally bed-bound for the last year or so of her life.
You are right - we could give her the best of care at home. That may have made the difference + prolonged her life.
I also have to say that the Hospice Nurse we were assigned to, was terrific in many ways.... As we buried mother, Dad was in the hospital and had a feeding tube put in also, after I was told that lung cancer surgery for him was not possible, that he would not survive the anesthesia. I had to take a suit of clothing to the hospital, to get him straight from there to attend mother’s memorial - and next day get a nurse to stay with him while the rest of the family went to mother's funeral 4 hours drive away at the family burial plot. I so hated for him to have to be left out of that... but again the Lady I had help me through all these hard years and on that day, was not from Hospice. She was brought to my attention via County Eldercare services, which allowed me to employ her according to income-level.... They also sent out a Nurse 2x/week for Dad, -- later in addition to the visits by Hospice for mother.
There is other help out there, other than Hospice, but I don't think many folks are totally aware of those resources.... Asking a lot of dumb questions while in the right places - such as during a hospital stay, ..Dr.s office,.. or just Googling it, .. does bring results.
I remember being surprised when my questions resulted in a Social worker coming to Dad’s hospital room to tell me that nursing help was available not connected with Hospice... and that is what I choose after Dad’s last hospitalization up to his passing .... caused by the fact that Hospice dismissed him the moment I took him to the ER, and he was admitted.
Actually the Alzheimer Association was my starting point 4+ years before, which I found online, since I was new to the area as well, when my Dad , after moving here, started initially just running from the house when he got upset over the least things..... a symptom of severe hardening of the arteries for which he had been diagnosed.
My concern was that he had no ID on him, and the ALZ-Assoc. sent 2 ladies to assess all. They told me to contact County Eldercare, +things started rolling from that point on... Yep,,, that’s also when the paperwork got out of hand – Thank the Lord that my daughter could help with that during the worst times. Again overall, I agree ... the help I received from all agencies was down-right necessary for me to care for 2 parents sick at the same time........I wish all in such situations well , and much stamina and persistence !!!

Hospice sure has helped me. I realize there is a fine line when it comes to hospice vs ER care, that was drilled into me during the intake. Being on hospice however, doesn't mean ones life cannot be saved. We just have to call hospice first, if ambulance is required they will send it. Example, my mother who is now on hospice, falls, bumps her head and stops breathing... I CAN do CPR, call hospice, then call an ambulance. Also, just because they give you the care meds doesn't mean you give them all the time. Heck, I've only used a few on mom since she went on hospice and mostly it's the stool softener!

From reading DHilBe's post it truly sounds like both her parent's need to be on hospice, bless her heart for taking on TWO parent's with such vigor. Even if a patient stays on hospice longer than the 6 months doesn't mean someone is trying to beat the system. Good care at home has a lot to do with it, my opinion anyway. It does sound like she is taking excellent care of both parent's. Let's not judge and be too hasty.

My dad passed two days after being placed on hospice. Why? First off, he did NOT want them fussing with him, he was ready to die on his own terms, second, he had me to take care of him, third, he was a stubborn prideful man. I gave him just enough meds to keep him calm, pain free and awake until he became sleepy... he passed peacefully. Hospice was very helpful even after he passed.

We as carer's for our parent's need to understand how hospice works and also understand the dying process. There is a difference between MUCH needed ER medical care and actual end of life process.

Something else to consider is that often people do not engage hospice until their loved one are in their last days of life. We can never know what would have happened if hospice had not been there. Something we do know is that fighting pain can cause someone to hold onto life, instead of crossing over. If this is true, if someone is near death and pain is relieved, then there is a good chance that they will be able to let go of their lives here on earth. If that is so, it is a blessing to the person who was able to escape fighting the pain.

I'm sure that some hospice agencies are the pits, but I've heard so many good things about them. They help a lot of people.

I know the good Lord will take Mama when He says it is time, but I also believe one reason Mama has been in Hospice so long is because I have taken excellent care of her with the help of the hospice provider..AT HOME..by myself....sorry, just a little in shock.

Pam, I'm not sure how we, as caregivers get to pick staying in Hospice. I know if Mama didn't qualify for it we would not have been placed in it. And as I said, I didn't even want to do it...It is somewhat hurtful to think anyone would think I would want Mama in a hospice program to get free meds or help. I have someone who can't even lift her own head off her pillow....can't sit up without being propped, can't really sit up, period...AD....nothing but ensure....I can't imagine anyone would want their loved one in a hospice program just to get free meds or help....Really???

My heart just goes out to all of those whose loved ones passed soon after being entered into a hospice program...reading those posts, clearly it does appear you would have concerns...and I can't imagine the heartache...I know I didn't want to even consider hospice, even when Mama became totally bedfast, I don't know, they may take us off hospice, I certainly am not in it to receive free meds or help. I would rather Mama not be on it at all...But they are a tremendous help to me.

Yes I felt the same way. After checking into hospice my mom became unresponsive and didn't move, they gave her morphine and Ativan every two hours, then they moved her position bc rattling Cheyne stokes they said they wouldn't move her again but new lpn came in and moved her 12 hrs later. She died immediately after moving her. It's like they hasten her death, since once moving a patient In her position would put pressure on heart which it did and she couldn't breathe at all, they pretty much suffocated her purposely ...

DHilBe, you are a classic example of someone with a patient who is NOT ready for Hospice. When I read a post "mom has been on hospice for two years" I can't help but be shocked. How the heck does this happen? No wonder Medicare is now insisting on test results that prove the patient is terminal. In ten years Medicare Hospice costs have tripled. Either the HMO's are getting kickbacks or the families want free aides and Rx's. It's not right.

DHilBe...I agree...we as the caregivers who KNOW our loved ones should have input and be empowered in our loved ones care...especially hospice care. Like you, I had some early foibles with even our new hospice team, but I think they finally realize that while I never believe in keeping someone lingering when they no longer have quality of life and would never do that to Mama, there is a huge difference in that and in doing something quite easily that will promptly help the loved one feel better and still able to enjoy their life...

I think there is and possibly always will be a mindset by a lot of folks that medical personnel always know better, but that's not the case...and while I certainly am not a medical professional, I do know my Mama and have been very active in her care for the past twenty years and her direct caregiver for over three years now and I do not regret in the least the fits I have thrown when necessary to advocate for Mama....you have to....you shouldn't have to, but you do....

Oooh - dear - I do so feel with all who have lost family in this way..
I've been there too. I had Ma + Pa ill at the same time, at home, for 5+ years. At one point Mother's feeding tube dislodged, which kept us from administering her late-stage Parkinson's Meds and others she needed, without which she would suffer immediate severe discomfort, plus... NO food that morning ..... I wanted to get her to the ER......Hospice Nurse convinced me to take her to the hospital further away, where they had a Hospice unit, but I requested that she be seen by a Doc in the ER first and asked who would be the Gastro-enterologist who would see her ? " I don't know"--- "Well please do find out, while we wait for the ambulance to get here !"
... Somehow when I arrived there, driving behind the ambulance, that did not happen...... Mom was immediately transferred to the hospice unit......
Luckily I don't give up easily and stomped the floor very politely til eventually that Doc showed up, had her transferred to the ER, and fixed that tube inside 1/2 an hour........ Yet while that was happening a kind Hospice lady sat down beside me trying to comfort me into accepting that death was near... which upset me more than my mother's emergency condition.
I told her that she was wrong. That there was a difference between letting a patient starve by not fixing something that could be fixed... and her heart giving out. That I was not a murderer!
Mom's heart was still o.k. as I had just been told by the Doc who agreed that the tube problem was fixable ... so why were we being told she was in her last hours...??? The Hospice mindset, employees and volunteers are saddle with via their Hospice protocol instructions !!!
What I saw here was that Hospice has a mindset, of comfort care ONLY, due to Medicare rules that is so entrained in their set-up, they really believe that relatives are not willing to see when the last hours are happening... and try to convince family otherwise...... It is not that they are mean, they just think they know more.
So the mindset of Hospice personnel is bound to Hospice instructions, due to Medicare necessary rules to prevent misuse of their service in the Hospice contract, and mistakes happen as each entity thinks they know it better.......
I was not Hospice's favorite client... I had 2 patients in our house at the same time, eventually admitted to 2 different Hospice Companies, at the same time - and since I had worked as a Nurse Tech in hospitals and private duty for 20 years... I did not let them get away with anything.
I had enough schooling to understand the protocol for certain conditions, and if that protocol was not followed I took either of my parents to the ER... or called our Doc to suggest treatment protocol to follow, BEFORE I even listened to Hospice.
That's not very welcome with Hospice, since each ER trip required ENDING the Hospice connection and letting the patient RETURN TO Medicare payment ONLY while in hospital.
Then when I took them home again from the ER, Hospice had to be re-instated.
I got lots of complaints thrown at me, even with phone-calls while I was in the midst of discussing my father, or mother's condition with the ER Drs., but the treatment my parents needed … I decided… and did, and Hospice had nothing to say - and - I did not care if they fussed and had a lot of paperwork.
Hospice mentality is to take on a patient and then dictate the care according to their standards. The family's wishes are often opposed, and emergency medical care is not supposed to happen, .... it is pretty much end-stage care only, but Hospice often enters the care TOO SOON , when the patient still needs quality of life-care , not dying care only... !!!.... Therefore when an emergency situation occurs, that's when the family has to stomp the floor and make the care decision they want, even if that means disconnection from Hospice Temporarily !!.... while in hospital care.
It was funny - each time that happened, how quickly they would re-instate TO HOSPICE after the return home.
Hospice is used to dealing with low-medical-knowledge-families, having no choice but to trust Hospice personnel AND THEIR ADVICE+MINDSET . They are not fond of family folks who tell them, "we are going to follow normal medical protocol" AND WE ARE GOING TO do IT MY WAY, ...because I want no regrets after my parent is gone... I make the decisions in my house , not Hospice !!
Such as ......Dad has a productive cough, a specimen needed to go to the lab for culture NOW, and "NO" we are not going to wait and see how he is 2 days from now, during your next visit !!
That Nurse had more patient visits ahead of her, so she was in a time-crunch, but Dad had non-operable Lung Cancer, he needed a specific antibiotic NOW in my opinion, even if I have to take the sputum specimen to the lab MYSELF.... which I did, calling one of my aids to stay with him and Mother, while I went to the hospital lab.
2 days later my Dad was on the proper bacteria-specific antibiotic, which I had followed up every step of the way till "HIS" old Doc's Rx - not the Hospice's Doc's Rx - arrived from MY Pharmacy, - NOT from the Hospice Pharmacy - !!
By the RN's next visit, I had just started my Dad on that antibiotic which the lab-culture indicated, not a BROAD-SPECTRUM antibiotic that the Nurse had suggested, and which does a lot more intestinal harm, than a Bacteria-specific one... and within a week the green phlegm had disappeared....
A 2-day wait, would have left him much worse off... and 4 additional days without necessary medication..as it usually takes 2 days for the lab to determine the specific bacteria. In my book that's not "comfort control" advertised by Hospice!!
All individuals make mistakes though at times... and the worst happened after I found my mother not breathing in bed, but still had a pulse, and I did just 3 CPR compressions to get her breathing again, followed by suctioning the foam/saliva that caused her to choke... caused by the fact that she had wiggled too low in bed.
After I had repositioned and elevated her, turned her head sideways + settled her, she fell into a deep sleep, but her vitals were ok.
I followed the rules and called Hospice to let them know what happened since they required that after any incident. Later a Hospice P.A. appeared to check Mom, and then stood at the bedside to tell me in a loud enough voice which my mother could hear, that I had NO RIGHT to resuscitate and the Resuscitation order was hanging on the refrigerator and I should have followed it........
1.] In NSG-school I was taught very clearly that one should never discuss a very ill or dying patient's condition in front of the patient - since often their hearing is much better than one thinks...
2.] I'm sure this PA not think clearly, or he would have realized that he was asking me to stand there and do nothing, knowing that I knew how to do CPR , that I had the suction machine right there, but I should just let her choke to death ??? , which in my book was just like killing my own mother due to something stuck to the fridge !??!
I walked him out the door so fast......
But that bad day wasn't over yet. Hospice had a rule to also call an RN to the incident location. The Nurse who eventually rang the doorbell, after my family had also arrived, proceeded to tell my daughter, that she thought Mom was in a coma…
I just shook my head and told her Mom is deep asleep after the trauma she just went through… and ...the next morning my Mom awoke, hungry and singing, along with Doris Day, “ Kay, serra, serra…” – her favorite song…. !!!!
Family member often have better intuition about the condition of their loved ones !!! They’ve known them longer !!!
It's that "NO-Resuscitation order which bothers me. !! Conditions ripe for dying, can be so varied.
If the patient still has a pulse , but does not breathe, he should be given CPR in my book and sense of right and wrong,.... if you know how to do it.
It is simple, in Mom's case I did not have to do mouth to mouth, just started compressing to see what's happening to the her before I even thought about mouth to mouth mode... in my case Mom started coughing and sputtering after just a few compressions... so suctioning became the next choice...and especially since the underlying cause was not due to the main illness... the order does not say, " Ooooh, but if choking occurs due to liquid, just let them die. "
It does not mention other situations on that order at all... So IT IS the family's sense of what's right and what's wrong that has to be used... A patient who shows foam at the mouth is choking. And that's why we had the HOSPICE-SUPPLIED Suction Machine standing on the bedside table.... to prevent her from choking on her own saliva........hmmm !!!
Hospice is only as good as the training of their personnel, and they are human, given to making mistakes in judgement in one of the most hardest and critical periods of life... the end of it all ...We have computers now. So, dear families - do use the Google part and inform yourself of what may come your way regarding the care of last stage patients under hospice care.
Simply reading AgingCare is so informative and helpful... that should help many family folks !! ......It has helped clarify things for me in the past, made me feel less alone in a dumb situation.......I also suggest that sometimes printing or forwarding the info to other involved family members is important to avoid hassles caused by difference of opinions within families......... and I wish you all well... !!!

I am also very glad to have the comfort kit we were provided at the outset of the second hospice (the first one did NOT provide that...only a nebulizer and the albuterol...) but re the comfort care kit, and of course depending on each individual situation, I am pretty sure if I just administered all the things in it on a regular interval, it might hasten my Mama's passing, but I am very very cautious to use each med only for what it is intended, only when needed and after a thorough sit down and get to know what each one is for with our hospice nurse...I think I have used the morphine no more than four times in 15 months, and the oscimin three times I believe, for increased secretions...that is it....I'm pretty sure ours monitors the dispostion of it pretty well also, and using the meds as needed when needed has helped Mama remain comfortable and happy so far....just praying things continue to go that way...

I would like to add that I have found that just because you have hospice involved, does NOT mean you don't have a voice in care for your loved one...I think it is much to the contrary and our hospice provider seems to be very receptive to all of my inquiries and even my suggestions regarding Mama's care. I do it in a way of concern, not trying to be bossy or questioning their ability, but we as caregivers particularly in an in home setting know our loved ones better than anyone...I have personally gone through issues with Mama where she just seemed to be declining rapidly and while our hospice provider was definitely trying to help her be comfortable, she continued to seem moving towards the end of life and they even told me I should prepare myself...Finally, I had been going through my mental notes about the sudden decline and other issues I had observed with her and I called and talked to the nursing director and requested that we at least try a course of Cipro because I had seen so many of these symptoms with her in previous cases...The nurses were very amenable towards getting the script pushed through and within one dose of beginning the meds, she began to improve...Mama continues to improve and has become lucid again...as lucid as someone with AD gets, and she is smiling...hospice was not negligent in their not having prescribed the meds, but they are not there all the time like I am either...so I think that a GOOD hospice welcomes input from the caregiver....I know ours does..

You know, I think that it just really depends on the hospice provider...We have had two different ones The first was not necessarily a bad one I suppose, but totally different approach to care...They also provided very few supplies and griped about anything I requested that was a necessity to care for Mama. I was told it was not an item that was provided by Hospice..ok...fine...EXCEPT once I finally changed hospice providers after a very bad and infuriating experience with this one dropping the ball several times with pain relief for my Mama, the new one has been completely different.. We also were informed that because Mama was only on a diet of ensure now that item was most definitely provided by Hospice as were all the other things I had been told were NOT provided by Hospice...looking back I wish I had followed through with a complaint against that first one, and yet, I am so tired all the time just the fact that Mama is now being very well cared for IN HOME, and they are also very kind towards me which is a huge help, emotionally particularly...so again, I think there are some bad ones out there, and then there are some great ones...thank God I found one of the great ones....if you have one you don't like, I'd highly recommend shopping around...interesting enough, once I had gotten fed up with the first one and fired them pretty much pronto, THEN they started moving regarding all the stuff I had been begging for for months...too late buddy....

The medication administered is meant to give comfort towards the end of life. It does slow down the heart rate, and breathing patterns which is why someone on a comfort kit is regularly monitored for change. From 5 years of experience administrating comfort kits to seniors suffering from progressive illnesses, I have noticed that the comfort kit does assist in helping them pass on.

The question remains, would you rather watch them suffer towards the end?
All families have different opinions, and we have the right to make the decision which we think is best for our suffering parent.

I don't understand why it would benefit the for profit hospices to kill of their income stream of 5K per month per patient minimum from medicare/insurance. If they were really in the business to squeeze every nickel out, they would do things to prolong life, not shorten it.

Beware of the for profit hospices

I've had a good experience with inpatient hospice but had 2 bad experiences with home hospice and a bad experience with an inpatient hospice (Vitas in New Jersey). My father had bladder cancer and they would not treat him when he had a urinary tract infection. My father had always been very sharp, but was out of his mind from the infection (it is common in the elderly). It was actually cruel. No antibiotics were given, but we were told he could go to their inpatient unit for treatment. We had him admitted but they did not do anything to even make him comfortable. He went from bad to much worse overnight, all due to infection. Ended up taking him down to the emergency room where he was admitted, recovered from the infection, and eventually came home without hospice. It's a terrible feeling when you are told that using a home hospice organization will get you some additional help at home only to find out that no matter how many calls you make trying to get that help, it's at the discretion of someone who may or may not return phone calls. The hospice nurse was a volunteer who worked elsewhere and was difficult to reach and more often than not did not return our calls. How is that helpful?

My father-in-law was in an assisted living, and we had home hospice for him. He started to have continuous seizures. Hospice gave some Dilantin, but he still had almost nonstop seizures. They said not to take him to the hospital. He eventually fell out of his wheelchair while having a seizure, hit his head, and had to go to the hospital. ER doctor told us about inpatient hospice across the street from the hospital. He was admitted to the hospital and transferred there and received wonderful care until he passed away. In both cases, home hospice caused more suffering rather than less. I do believe the role of home hospice is to hasten death.

Sad, it must be very difficult. Good for you scheduling grief counseling, that will help. I have been caring for my Mom for almost four years. I know if she were to pass that it would be very difficult for me. Take care of yourself. Just try to at least get out each day, if just for a littke while.

Gladimhere, I'm trying. I've scheduled grief counseling. It's hard to even get out of bed. I took took care of my Mother for 11 years and I feel like I was a bad advocate in a crucial moment. There are so many post on the internet about Ativan and Morphene being lethal for COPD patients. I just wish I had read and studied more before making the Hospice Choice for her instead of just placing trust in the medical staff.

Sadheart, I am so sorry for your loss. You did the right thing, doctors would not have recommended hospice had they not thoughtnit was the right thing to do. She may have lived a bit longer, but it would not have been much of a life. It is normal I think to second guess ourselves and feel guilty after a loved one passes in hospice. Try to take it easy on yourself.

My Mother passed away Feb 23, 2015 while in Hospice. She was placed in Hospice Care with COPD. After several trips to the hospital, they told me there was nothing else they could do for her so they recommended Hospice Resident. I wish I understood more about hospice before she went. I believe if I had insisted she go in the hospital then she would have gotten better and gone home at least for a little longer. It's very hard to live with. She only lasted about one week on Morphene pump and Ativan. Completely suppressed her breathing till she just slipped off 8 days later. It may have been a peaceful death for her but my life is traumatized and while her tears have been wiped away in Heaven, mine remain. My Mither was a fighter and Hospice was no place for so eone determined to live. I'm sorry Mom. I'm so sorry I didn't insist the hospital admit you and work with you.

Yes it was a horrible experience, it was a corporate run hospice. I still have the letter stating that violations to care and rules were found. Too late for us, but if it helped other families.

I remember weeks later a woman from their main office saying her sorry she was and that my story made her cry, I told her I don't want to hear it, I am not calling about a bad meal at a restaurant, there are no "do overs", no going back on this. Too little, too late.

I also told her my father is a very generous man when it comes to charitable donations(and he was) so you screwed yourselves, because he was going to donate money until we went through this horrific experience.

Honestly hospices that I am associated with / work for are not for profit and families keep their loved ones at home to die which is what hospice was originally intended for. People/companies looking to make big money from death dont spend monwy where they ahould and dont treat patients and families as they should.

@ irishboy

I am sorry that you had a bad experience with your hospice. Alot of families just arent ready and certainly some hospices suck.

Papscal, I find you to be very patronizing, just because you're a nurse doesn't mean you know everything and can speak for all hospices.

As I already posted a few pages back I reported to the state the issues we had with the hospice my mother was in. It took a few months but the state did an unannounced onsite visit and found several violations .

Too late for our family, but if it helped other families going forward it was worth the effort.

So please don't say "hospice is what you need it to be", it certainly what my family needed it to be, and we're not alone.

I understand a nurse giving the patient morphine for pain when the patient denies pain. My mthr had a softball sized colon cancer in her side and would wince visibly when her tummy was mashed, but denied she felt anything at all. After the surgery, she did not understand why she had a line of staples up her tum. Now that she has big adhesiions or a mass and we suspect a regrowth, we can't get her to admit any pain at all. Our hospice nurse has seen enough patients to know when the patient is being brave and actually could use something. I am thankful to know that mthr won't suffer through death the way she suffered for years with that big cancer.

It is really easy to lay blame when you arent ready for the passing of your loved one. Really with all the posdibilities it's not hospice or the nurses. For all you Christians I personally blame God. It's gods will. Really hospice is there for their comfort and when iam hurting or dont feel good i tell my loved ones everything is fine and suffer in private. Like a hero Hospice is what you need it to be.

Our family was against hospice since they believed that they make you die quicker. Well mom was in the nursing home memory care unit and just quit eating and drinking. One morning they called and said she was unresponsive and that I needed to come. When I got there she was fidgeting around in the bed trying to push the blankets down and trying to get up. They did not want her to get up because she was actively dying. They gave her the atavan and morphine and just kept on until she passed. It is hard to watch someone in the dying process. After the meds she just was resting and I asked if she would wake up again and they said no. I was meeting the day after she passed to put her on hospice, but she died before I could. I knew that she always said don't let those people near me. So I was reluctant, but in the end the nursing home gave the meds.