I have posted on here many times and answered questions every now and then. Dad passed away Oct 7th 2013 from Liver Cancer . He was in a hospice facility for 11 days until he died. The day before he was admitted he was in the hospital and was talking,eating and very clear headed but his ammonia levels were high and he had been very combative, not eating and wouldn't take his meds for 4 days at his nursing home. ( He was in for a Psych Evaluation.) The hospice worker talked to me about admitting him instead of returning to the nursing home. I agreed to this and arrangements were made. He was transferred later that day and was alert and in good spirits. The next morning he was unresponsive and stayed that way until he passed. They gave him morphine and ativan around the clock. He never got any water but they did cleanse his mouth and moisten it with swabs. It seemed like he could hear me the first few days because I would shake his shoulder and say "dad". His eyes seemed to be moving under his eyelids and his mouth would move slightly. I did ask about them lowering his dosages so he could wake up a little. The nurse said he was getting a very small dosage already. I just wonder if the drugs made him unresponsive and if less was used he could have ate and drank and lived longer. I know it was time for him to go but I'm kinda puzzled about his going from complete alertness and straight into unresponsiveness so quick. The nurses did a Great job. I myself don't know how they do it. They treated dad like he was their baby. So gentle and compassionate. I was just wondering if anyone else had the feeling that death felt a little rushed once their loved one was placed in Hospice.
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'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 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....
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.
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.
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 !!!
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
It is excellent, insightful and most importantly validating. I don't care how many hospice nurses deny this is happening. I do believe there are great hospice nurses that would never do this. I think they are so horrified by the idea they won't admit it can happen or they justify over drugging a person to death (I'm talking about old&idemented patients, not patients in pain. I actually support assisted suicide.)
But it DOES happen. Get on that site. Read the book. Deaths ARE hastened by some hospice providers.
Father was terminal, that does not mean we have to neglect their care or deny or neglect a secondary infection, to hasten their death !!!
Babalou, sign up for hospice????? We weren't given a choice with my mother, was told in the hospital that the woman from hospice is here to meet with you. There was no choice given, do you not get that hospitals ship the person to hospice?
You don't know what you're talking about.
There was no choice. The hospice was horrible, I reported them to the state, and onsite unannounced visit was done and violations in regards to care and rules were found 3 months later.
I did that for other families.
Irish, I personally was absolutely given a choice of "signing on" with hospice...so whether there is a difference where you are I don't know, but the doctor came in and spoke with us when Mama was in the hospital with pneumonia and had become totally bedfast and the doctor suggested we talk to a hospice provider and recommended that we do so, but the hospital definitely did NOT just put Mama in hospice...so I think there is just a difference in the provider, the region or whatever..
I hate to hear when someone has such a horrific experience with hospice..I know our first provider was not nearly as sensitive to my Mama as the one we have now, but our current one is excellent...once again, it must vary wildly..and that is so sad, when the goal should be palliative care for the patient and assisting the family and patient along the final journey...so horrible that some apparently do not subscribe to that...again, I'm so sorry...
Horrible experience, social worker was nice the nurse was a b**ch. She would say things in front of my father "her blood sugar is 24", my dad as was I was having hard time grasping she was leaving us, my father asked "what do you do", her answer "nothing" and she walked out of the room. That is just one example, there are more.
We left my mother about 2 hours before she passed, the phone rings and this woman who doesn't identify herself asks if she is talking to the husband or the son, I said son, she says "this is Debbie from hospice, your mother is dead"....just like that, no "I'm sorry" or "she passed", I thought what if someone was by themselves, what if my dad answered the phone.
I will never forget that.
I complained to the hospice about two weeks later, and than thought that's not enough, so I reported them to the state, and like I said they found violations.
I guess hospice care does vary, but when it's bad there are no "do overs".