Had no knowledge of Dementia 'Palliative Care' vs 'Comfort Care'. Hospital docters nor Hospice (they have a lucrative contract with hospital) explained to me they were going to put Mom on Morphine and stop feeding her! I was
so sleep deprived for 6 years, did not comprehend what I was signing. It sounds crazy now, but when it was happening I just couldn't think anymore.
She was writing out loud a poem for the nurse who watched her for the day while I got her house ready for a hospital bed in the living room. All rehab homes were full. She hadn't spent the night in a hospital for over 60 years. Totally healthy except for dementia. No one with this Hospice company told me they were going to end her life in 14 days!!!!
I have an attorney waiting for me to begin litigation. He said this happens all the time and more of us need to stand up! A professional who tried to place Mom in rehab said this happens way too often with this Hospice company & our hospital.
He was shocked to hear that Mom was gone. He encouraged me to take action.
I'm so angry at myself that I haven't moved forward.
Who else has this happened to?
Bottom line, I feel complicit in her death. I should have hired help sooner.
I tried to beat Demonic Dementia all alone. Thanks for listening.
BUT I spent my lifetime as an RN, and what I CAN tell you is that I do NOT trust this attorney without hearing more.
Any attorney that suggests litigation when hospice was agreed to, and the patient was elderly and ailing? Well, let me start HERE:
If you tell me that this attorney will not touch a penny of YOUR money, and will take this case "ON CONTINGENCY", and will accept his winnings as a portion of the recovered money from any suit? Then he may actually be honest, if misguided.
HOWEVER, IF he is wanting YOU to front money for a case? Sorry, I don't trust him for a single second. And you need a second opinion right now. I suspect he will be stuffing YOUR money up his sleeves fast as he is able. Only my opinion after a long career in medical and more than a few law suits.
There is no honest attorney in my humble opinion who would suggest to you that you would recover anything in a case involving an elderly patient for whom Hospice entered with the full knowledge of their doctor and family and rendered comfort care.
I am very sorry for your pain. Please speak with the doctor and with a psychologist before you give another penny to this man. There is utterly no reason for you not to take all the time you need. You are clearly in terrible pain and distress and you need help before proceeding with clarity.
Hospice is not there to kill our elders, and any attorney who suggests that "they do this all the time"? Well, if I really said what I thought of him or her I would be the next one sued by him or her.
I am very sorry for your loss. For your grief. I suggest counseling to help you through the shock and distress you are feeling now. Any loss of one we love, inevitable it may be, is horrible to endure. It is not unusual for us to be in a vulnerable position at these times. I hope you will update us as you go on, and again, I am so very sorry for this hard loss.
I am very sorry for your loss. What reason was your mother put on hospice? How many years did she have Alzheimer's before she passed? My mother is in the beginning of her 5th year.
You said Mom was "Totally healthy except for dementia".
Dementia is caused by brain changes & are usually progressive - it gets worse. The most common type is Alzheimer's, which is a terminal disease. You couldn't see it, but if she was diagnosed with this - changes were happening in her brain.
Where I live palliative care IS the same as comfort care.
Sometimes decisions have to be made between Comfort Care or Active Treatment. Active Treatment may be withdrawn if the treatment is futile (no longer working), too painful/burdensome or if someone has a terminal illness & it does not improve their quality of life.
What caused the Hospital Doctor to visit or get involved?
It sounds like you are overwhelmed. No one should be pushing you to do anything- especially a lawyer. The circumstances will still be the same in a few months - reevaluate legal action at that time. An attorney doesn’t need to be one of your priorities right now.
I know this is a hard time but you will have to establish negligence on hospice’s part to sue them. Hospice usually explains what services they provide. Your mother had to qualify for hospice clinically. They have to review past medical history, prognosis, lab work, all this to get authorization for her insurance company to pay for hospice.
I’m not saying this happened to you but often in times of stress information could have been provided to you but in your grief and sadness you may have not heard it. We are only human and not perfect.
You have just suffered a major loss. Focus on getting through it. Nothing will bring your mother back, unfortunately. You are grieving which can take all your energy. The lawyer can wait.
I had concerns similar to yours, but as her physical functions deteriorated I realized that there was no possibility for any kind or rehabilitation for her.
That realization did NOT mean that I didn’t have very serious reservations concerning the morphine and withholding of nutrients and fluids, but I was also absolutely certain that I would not permit mechanical/artificial feeding techniques.
She passed very peacefully only a few days after hospice was begun, and I have no lingering regrets about how her situation was treated.
I hope that whatever way you address your loss, you are ultimately able to come to peace with your decisions.
This year he was infected by Covid in June and hospitalized. At one point they called me to ask if they could use a feeding tube. Based on his DNR, I said no. Within a couple of days, they sugested "hospice" bacause he was dying. As I remember, they left some information out. Like that they would not, could not feed him. However, because he was now dying, I could come visit his sleeping shell. I did have to wear mask, gloves, face shield, paper over-dress, hair covering and booties like a nurse would.
I was furious when I realized they were not feeding him, or giving him liquid food. No, just water.
I had not heard all they explained. As the days went on, I realized my errors....not the decision, but my sorrow at the decision I had made.
It was a hard lesson. I also had not understood the depth of the problems my husband had.
After his demise, it haunted me. I finally asked if I could talk to a manager at the hospice facility. I explained how my misunderstandings created more and more questions, and they were difficult to resolve on my own. I felt guilty for his death, and it hurt like hell. But I wasnt, and they werent either...although it took time to understand. What WAS important was that I loved him.
What is important is that YOU LOVED. YOU CARED. YOU DID YOUR BEST IN ALL THINGS. Let your mind rest.
Thank you for all your love and care. You did everything you could. It was enough, and more.
Love to you, for all your care. God kn
Hope this helps.
No hospice agency's mission is to end a life. It is to make the end of life as comfortable and pain free as possible. They do this partly by restricting intake to prevent aspirational pneumonia and to provide morphine for pain as needed. Death comes from the disease, not from hospice care. Many LOs are healthy except for the dementia, so it alone can be the sole cause of death. What does her death certificate state as the cause of death?
Please don't feel complicit in her death. Many caregivers wait too long to to seek the proper care for their LO. But how do you know? You make the decisions that you think are correct at the time. I am sorry for your loss and hope you challenge this lawyer's experience before committing to any litagation.
Yes Morphine is giving and yes feedings may stop but there are a lot of clients that eat up to the end and may not need Morphine till the end or very little. Hospice does not automatically give morphine and stop feeding a client if they are capable of eating.
Morphine is given for pain. Or to help in easing breathing. The only reason feeding is stopped is because the client is actively dying. First thing that happens is the ability to swallow goes. To feed someone whose body is shutting down does more good than bad.
When a person suffers from Dementia, the brain dies. When the desease gets to the part of the brain where heart and breathing are effected eventually that part of the brain dies and when it does, so does the person.
It sounds like to me your Mom may have been actively dying. If this is true, suing Hospice will be a lost cause. What I may do is contact the Hospice and ask to go over Moms care with them because ur having a problem dealing with her death. Do it in person and maybe take someone with medical background with you, like an LPN or RN. You were under a lot of stress at the time Mom entered Hospice. They do give grief counseling.