A few years ago, I decided to take my dad to an ALF. He could no longer take care of himself. He couldn't cook, drive, shower and dress himself. He was always using a walker and he fell of few times.
While at the ALF, his health started to get worst and he developed pneumonia and urinary infection. He was admitted to the hospital a few times for these condition then released thereafter. Last time he was urinating blood, I took him to the hospital and the dr told me that he has a mass in his kidney and his lungs are filling up with water. He told me that it most likely is cancer .he said because he is 84, it would be dangerous to operate on him. I made the decision not to have the surgery on him, rather keep him on medication and his doctor at the ALF will be checking on him once a week. His ALF doctor told me that he probably will not be getting better and that I should consider Hospice because he will get more nurse attention then what the ALF nurses can provide for him. He said that having Hispice doesn't necessarily mean that he's dying anytime soon, but it's a better option for him in terms of being monitored. So I agreed and he had a nurse come 3 times per week to take care of him and keep an eye on him. One time he had the urinary infection again, I told hospice that I should take him to the hospital and they said that once I admit him to the hospital, he is no longer under hospice responsibility. They suggested that I can take him to their hospital but they told me that all they will be doing was pretty much take care of him but not making sure he is improving , so I decided to take him to a regular hospital instead and a few days later he was fine and came back to the AlLF at which point, I signed up with hospice again.
That was about 6 months ago and he's been fine since. I saw him frequently and he was holding up just fine.
3 days ago, hospice called me and told me that he is having serious difficulties breathing and they ordered a nurse to watch him in his ALF room 24 hours a day for the next 3 days. I called him the second day and he semmed fine but I could hear that he was not breathing normally but we joked, he was very responsive and present. I dropped by to see him yesterday after worry with my daughter and there was a Hospice nurse sitting on a chair in his room, I went to him and I thought he was sleeping. I tried to wake him up but he wouldn't wake up and he seemed unconscious .nhe was breathing through tubes in his nose. I asked the nurse as to why he is not responding to me and she said that he's been like this since this morning, he has drastically deterioted , he's non responsive and his temperature is 104. Then she said" didn't someone tell you?"
I said, no, no one told me anything today and I spoke to him yesterday and he semmed fine. She said his condition today is really bad and she's sorry that no one contacted me to tell me. So I immediately called an ambulance and they rushed him to the ER.then he was admitted to ICU. I signed a DNR a while back with Hospice so his ER doctor asked me if I want to keep the form or I can revoke it so I decided to revoke to see if he gets any better. Hours later, ICU called and told me that he's doing worst and he went in pot a coma and they're putting him on life support. No w they are waiting for the catscan and after that, I have to make the decision whether to reactivate DNR or not.
His nurse tolled me that he is lucky he didn't have a stroke with a 104 fever and he probably had that fever all day and that's why he was no responsive.
I would like to know whether hospice should have called me immediately upon noticing that his condition is worsening?
Is it protocol to just let him deteriorated without doing anything nor notifying anyone?
Did I make a mistake by enrolling with hospice?
The doctor and the nurse a
Made me feel so guilty that I chose hospice for him. Was there a better option?
Thank you
I have to agree with those who say that when we put someone on hospice care, the idea is to let them die naturally and not continue to try to make them better. There are, at this time, thoughts of changing that rule. However, as far as I know at this time, when someone goes on hospice they are to be kept comfortable but that is all. The understanding is that this person's life is ending and that he or she desires no more effort to try to cure something that, in the end, can't be cured.
Not all hospice organizations are as good as others since they are all, of course, made up of people (and administrators). Someone should have made it more clear to you that what you were signing up for with hospice was comfort care. It sounds as if using the hospital’s palliative care unit may have been a better choice in this case since treating the illness was still part of your expectations.
My heart goes out to you. All of these decisions are so very hard, and our generation has to make more of them because people don't die earlier from diseases that used to take them at a younger age. Whatever we decide – keep treating or let nature take them with as little pain as possible – we can feel we are making the wrong choice. That is only human. You are doing your best, so give yourself some comfort in knowing that.
Please keep us posted on how you are doing. We really want to know.
Carol
It appears that you were not given a complete understanding of what Hospice is and isn't; what they provide and don't. The doctor who told you that your father probably had cancer should have been more explicit in laying out what deciding not to further investigate that diagnosis and treatment options meant. I believe that what you opted into was what you might call "comfort care", treat the pain and symptoms, but acknowledge that the patient is not going to receive life saving treatments. You took your father off hospice once before to treat an infection, and put him back on.
I believe someone should have notified you as to his sudden change of condition, but not in order to rush him to the hospital. In my view, signing on for hospice means no more trips to the ER to intervene. It means letting your loved one's body take nature's course peacefully.
I hope you have a peaceful outcome from this hospitalization. Please don't let anyone make you feel guilty about the choice you made; these are tough choices and there is no one size fits all answer.
Please do sit with a hospice social worker and discuss what is best going forward. Perhaps you have a trusted friend or adult child who could sit with you during this conversation so that you make sure you understand what you are agreeing to. Hope this works out well. Let us know how it goes!
Since your dad was on hospice they should have been able to administer some liquid Tylenol to get his fever down. When someone is on hospice they receive comfort measures only which means no trips to the Dr. or the ER. Someone should have explained this to you more clearly.
It has been my experience that when a patient is on hospice care in a SNF or ALF facility the facility thinks hospice notified the family and hospice thinks the facility notified the family of any changes in the patients conditions. Make it clear to both that you expect a call from each of them. You are paying the facility for 24 hour care and they are still responsible to keep you informed.
You should NOT feel guilty for putting him on hospice. It seems to me that is the best thing for him. Hospice has strict guidelines and would not have put him in the program if, upon evaluation, he did not meet the criteria. All of the Hospice people on my MIL's case are wonderful, caring and loving people. She has CHF and has been in a SNF for a year on hospice care. I never thought she would last a year but with the extra care hospice provides she is doing very well. God bless you and your family as you make your way through the very difficult process of making the right decisions for your dad and allowing him to pass with dignity, whenever that time comes.
Patients on hospice can and do eat. My mother was one hospice 3 months and my husband 5 weeks. They certainly ate. Putting in a feeding tube would not be recommended, but giving people food they can eat is perfectly OK. Hospice explains that pushing food when the body is shutting down is not comfortable for the patient, but the patient's own desire for food should be honored. My husband had a normal breakfast the day he died.
So I think, Iwentanon, you may not have a full understanding of hospice. If you ever are involved in decisions for loved ones, you may want to look into hospice more closely before you make decisions.
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