Did Hospice neglect to warn me about my Dad's condition?

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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

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I'm so sorry that you (and your dad) are having such a hard time. I agree that there must have been a glitch in the hospice system not to have notified you that he was deteriorating so quickly. They should have called you immediately. Most likely, since the ALF was part of the care, someone at hospice thought that the ALF had notified 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
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You made the right decision by signing him up for Hospice. I think some anxiety meds for you would be helpful. I think you need to accept that time is very short, and stop going to the ER. It takes great courage to accept that he is leaving soon. I hope you have someone strong with you.
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I'm so sorry that your father's health is deteriorating so rapidly. Is he doing better in the hospital?

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!
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Any time there is a change in condition in our loved ones we should be notified.

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.
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I am so sorry that you weren't notified sooner, when conditions changed. I am also sorry that you didn't understand the focus and purpose of Hospice care.
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I think you need to have a fuller understanding of what hospice is and what they do. Normally hospice patients do not go to the ER or hospital they op to be kept comfortable with medication and let nature take its course. If you want your father treated for any and all symptoms per haps hospice isn't your best option. It is normal for patients to start to run fevers when they are approaching the end of life, its the bodies way of shutting down. Hospice should have educated you on the signs and symptoms of end of life. Did your father ever share with you his wishes? Did he want to be put on life support? Did he want extra measures take to sustain his life? There should be someone in the family that would know how he felt about these things. Yes hospice should have notified you of his decline as soon as it started to happen.
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I am very sorry to hear about your dad. You don't have a clear understanding what hospice is. Your hospice provider should have explained it better. Hospice is comfort care when the patient has reached the point that he is not going to recover from his condition, such as cancer, organ failure, CHF, etc. It is a loving, dignified and humane way for a person to exit this life. Appropriate care is given at every stage for the patient's comfort. I am surprised they let you go back and forth, taking him to the ER.
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.
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Iwentanon, since the objective is to keep the patient comfortable, medical actions and medications may be given for that reason. For example, my husband continued on two of his dementia medications because it is not "comfortable" to have hallucinations or anxiety. He discontinued most of his other drugs. Also the nurse catheterized him when it was clear that would reduce pain. She had a number of little remedies to help him feel better. But we would not have taken him to ER or attempted to prolong his life.

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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I worked as a chaplain and bereavement coordinator for a hospice for 11 years. I believe you made the right decision to put your dad on hospice services because of the additional care and support. It sounds like the hospice was directly affiliated with a hospital which is common but can create a disconnect of communication to the family. You should have been notified as soon as his symptoms were changing and he began to decline... Either by the hospice RN or a hospital RN. One thing that was so important while I was a hospice worker is that family needed to be involved with every aspect of their loved one's care and should be notified immediately when symptoms change. I'm sorry about your dad and I'm hoping that you're not second guessing yourself about e difficult decisions you've had to make. Sending hugs - ((()))
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Am I missing something? I thought hospice was not taking any medical action until someone died, no medication, no food, etc, because these are considered life giving measures and that the hospice decision is only for comfort until the end.
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