They said his ability to swallow was gone without having a swallow assessment. He had eaten a chicken dinner that day and eggs, no problems. He also drank normal fluids. His vital signs were all stable and did not require oxygen. They refused to feed him or give him fluids, put him on a high dose of morphine and sedation. He starved to death over 7 days. It was cruel to watch.
Hospice IS end of life care and nobody is accepted unless they're thought to have 6 months or less to live. Medicare would not agree to foot the bill otherwise. And if hospice "killed" their patients, they wouldn't get paid huge fees by Medicare so how would they stay in business?
I'm sorry you did not understand what you were signing up for with hospice services and comfort care for dad and his swallowing issues.
Food is not given during the active dying process because it extends the pain and suffering a patient experiences.
A human can live for much, much longer than 7 days w/o food. My father lived for 19 days with no food, for example, before his brain tumor killed him. My mother, 8 days before her advanced dementia and CHF claimed her life.
My condolences on the loss of your father.
It is known that many who cannot sustain the reality of a difficult loss will try to find someone or something to blame. Hospice is very often that entity. No one here on Forum will be surprised at your post, at the depth of your despair, nor of your misunderstandings of what hospice is, how and when and why it is ordered, and how it assists the dying.
Death is always dreadful to witness. I hope that your hospice kept your beloved father well medicated and out of pain as he passed.
Hospice will assist you by answering your questions and guiding you to grief counsel. Please avail yourself of them or of grief counseling of your choice so that you can soon honor your father by celebrating his life and by gratefulness for the wonder of the love you clearly shared.
I am, again, so very sorry for your loss. But as RN lifelong I had to stand witness as people literally screamed their way through the pearly gates begging me to kill them. I am thankful you didn't have to witness that for your poor father.
an RN for 20 years , in our hospice we admit for respite./ pain control . A lot of patients return home
Doing it as with POA is always good but not always necessary. Since most people will give next of kin basically all the same privileges. My grandmother never assigned a POA, but as next of kin on scene. They treated me as her POA. The only department that denied me was the records department. So they wouldn't give me a record of her care but they allowed me to decide what care she got. I was the one that initiated hospice. Then took her off of it for a year before finally putting her back on hospice at the end.
But you're right, it is "cruel to watch" and heartbreaking, as we know that we're losing someone we love and that there is nothing we can do to stop it.
My late husband was under hospice care in our home for the last 22 months of his life and when he started his dying process, I was told that he would be dead in 3 days, but instead he lasted 41 days with no food, and about 25 days with no drink/fluids other than the liquid fentanyl he was getting through his picc line.
And yes, that was horrific to witness, but I knew he was dying and there was nothing I could do to stop the process no matter how long it took.
I am sorry for the loss of your dad and that you feel there was something more that should have/could have been done, but in reality it was his time to go, and I pray that sooner than later you will have peace about that fact.
God bless you.
The profile on AC should be filled out in the event that you are new to AC so that others know who you are, where you are, and who you are attempting to get care for. Good answers cannot otherwise be given.
I wasn't aware that Hospice outside of USA allows for admission for pain management only.
So your father could no longer eat because he was not RELIABLY able to swallow well. Was he offered and did he wish to accept tube feedings?
That is illegal.
Hospice is an end of life care program.
Doctors have to qualify patients for hospice and that requirement is that the patient has fewer than 6 months of life left.
The federal government pays for and runs Hospice. They are very strict that it is not abused.
If he had a necrotic toe and the only treatment they were doing was pain control , it would eventually kill him as gangrene sets in , and it could have caused a sudden , very quick demise ( septic shock ) . My grandfather died this exact way , after having one leg amputated due to severe PVD , when the toes on the other foot got necrotic he decided not to do another amputation, fully aware that the necrosis would kill him . He also had other serious medical problems due to being a chain smoker and alcoholic.
There has to be more to this story. Why were they not treating the toe issue ? Why no amputation ? Was he not a candidate for surgery ? What were his other health issues that they decided pain management was his only option ?
I don’t think you were aware of how sick your Dad was , which is surprising since on your other thread you said you are a nurse . I am also a nurse . Necrosis kills . Nobody only gets pain management for that and survives . And if you thought he was still able to eat or drink during part of those 7 days , what did you do to advocate for him ? Were they willing to have a formal swallow assessment done in hospice ? Or did they see problems with him swallowing because of the pain meds and sedation ? Was Dad awake and alert asking for food or drink ?
If so , did you try to get Dad to be taken care of by a different hospice if you felt he was suffering ? Was another hospice and option where you are ?
I am sorry for your loss . Is it possible that you weren’t seeing the situation clearly due to denial , not wanting to lose a parent ?
Some things are just not adding up here. Something is missing.
I'm wondering if when the doctors where talking to you, they said things that you were not willing to hear. That your brain was in denial and you just heard what your brain was able to except at the time. That really does happen.
When my Mil was on hospice my FIL was all excited when they took her off oxygen. He thought that ment she was getting better, When it ment the opposite.
Also I am wondering if there was dementia, if not, I'm wondering if your dad privately told the doctors, he was just done and pretty much begged for hospice without your knowledge.
I could be very wrong to both, but that is what my first instinct were.
🙏😔
I very much hope that new posters begin to fill in their profiles, and I am more and more tempted not to answer any who do not.
You NOW TELL US THAT A) you are an RN and that B) you do not live in the USA and that C) WHERE you live, people enter hospice for pain management and respite, not for end of live care. D)And that your father entered hospice with a necrotic toe.
So. You are an RN. If you wanted a swallow eval done and you were proxy for health care why did you not get a swallow eval done? If you were proxy and you father agreed to an NG tube why did you not get one placed for nutrition.
How old was your father?
How long had he been ill?
Why was surgery for removal of the necrotic toe not done. As an RN you would know that not removing this toe could lead to sepsis which can move like a wildfire to shut down all organs, causing shock and death. Can you tell us why this wasn't done.
Ultimately, I am not quite clear on what your question is for this Forum of Caregivers. Your father, sadly, has died. You, as an RN, will be quite clear what he died of and why, even if the medications of hospice hurried that death along by some moments, hours, days or even weeks. We cannot know the details of your case. It hardly matters if we DO know them. There is little we can do but offer you our condolences on the loss of your father. And we can refer you to Hospice which I hope in your own country offers, as it does here, access to grief counseling.
Those who can't access by my poor copy/paste method can find both her posts by accessing her profile, go to "following" and look at first post and it's 17 responses.
Seems your Hospice works differently than here in the US. Really hard to comment when the criteria is different.
If you join a website based in another country, you have to learn the terms. If you are indeed a RN (or whatever the local term is), you could /should have made your expectations to the local facility a lot clearer, and intervened a lot quicker.