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.
Hospice - their role is to make the transition from life to death as painless as is possible for the patient. It focuses on providing patients with relief from the symptoms, pain, physical stress, and mental stress of a serious illness. It is not the role of the hospice to keep someone alive by contravening their wishes and adhering to those of the family. So my advice is this
Get an advanced care plan for yourselves now. You can then dictate whatever happens to you and your family wont have to have any input unless you dictate that they can. I have one in place and my children will have absolutely no input into it because I don't want them keeping me alive unnecessarily longer than my natural body has determined. They can have financial poa but not my health - I determine that one. I have very clear views on natural life and natural death and while I accept some meds are necessary to keep me alive on a day to day basis I.E. Diuretics or insulin or warfarin depending on what was wrong with me I do object to having my heart restarted. It is a very personal opinion for all of us and we very often never discuss it. Man up people and discuss it with your loved ones now
Examples of what you may want to include in your advance care plan are:
Anything that is important to you or that you are worried about.
Any details of people that should be asked about your care if you are not able to make a decision for yourself, or the details of any lasting power of attorney.
Anything that concerns you about your health now or in the future.
How you would like to be cared for if it becomes difficult to care for yourself.
What your priorities are in regard to your future care.
Where would you prefer to be cared for if you became very ill or you were at the end of your life?
Anything that is important to you.
Letting people know
It is useful to involve professionals and families in completing an advance care plan and it is useful to give a copy of your wishes to somebody else, such as a close family member. Remember to keep your own copy safe and show it to relevant professionals and family members.
My Mother, after having a serious head trauma fall at home, while in the hospital went into delirium and it was so difficult to watch, we were trying to hold down her legs and arms because she was kicking with her legs and with her arms trying to reach up. A doctor come in and gave her something to calm her down.
So, unless your Dad was heavily sedated, chances were high he would go through delirium.
Dad lasted from the Sunday we took him to hospice care to the following Saturday. I woke up on Saturday morning at 7 am and prayed to who ever would listen to let my Dad go. By 7:14 am he was released.
Tomorrow it will be only 3 months since his passing. Yesterday mom blamed me for his death because I took him to hospice care even though the whole family was there. So this is what I meant when I feel your pain. Her son (the golden child) who never does anything wrong wanted to take my Dad out of hospice to his home. Mom thinks he would be alive today. Her rational part of thinking is gone. Even though I could not get the biopsy I did get the afp test that was 6000 highly elevated and from what I have read a positive indicator of cancer. The tumors were sticking up through his gown and very hard--how can you argue that he would still be alive if he went to her son's house? There is only a 17% chance of survival with liver cancer and we have no idea if it was primary. The home health nurse said she thought it strange she had a lot of patients in the area and since then a nearby small village in the last 2 years has had 6 cancer deaths 3 that were pancrease in just 2 years and all were different in ages and some did not smoke. Village of about 20 people.
Mom as others have claimed hospice dehydrates, starves and over medicates, but it is the process for most. The feeding and fluids prolong and make worse the agony--it is the living that have to quit being so selfish because they are left behind. My mom wanted to go with him. They say grieving brings anger and then the blaming of others. We are the battering rams. It makes it hard on me because her golden son is alienating me now and getting my mom the same way-- hard because I am the POA and caregiver and how do I do that if the client is not communicating. Now I have to deal with a toxic family that some are only looking out for financial gain and that makes a person sick.
So I think that we are going on the right foot by looking and screening them out or in. Thanks again!!
Avoid Vitas. I did not like how the interacted with me. They are for profit and I have heard unhappy reviews.
Her home based care is superb, however.
You continue to have your 'IMO' and you can have that - just as you did with the forged POA (although the courts disagreed) just as you did with the nursing home (although that appears to have not been vindicated) , of course you can but how does that help anyone who loved ones are terminally ill and who have been recommended to use the hospice? I find it insulting in the extreme that the story changes so regularly and yet newcomers will not recognise the small nuance of changes that do occur in your rhetoric. Are you now saying that the HOSPITAL killed your mother or that they made her terminally ill so she had to go on hospice?
I actually can only find one person who is wrong here and because I have not insulted you I wouldn't dream of saying that that person is you. Others may disagree. Out of her because you have never listened in the past and I don't think you will now unless we tell you something you want to hear.
I have read your posts with concern for many months now, and I am tired. I am very sorry for your loss.
Are you sure your Mother wasn't terminal? In other postings elsewhere on the forums you mentioned that your Mother's colon had burst, well that is a very dangerous situation, especially for someone who is quite elderly. She didn't have surgery to repair the damaged colon, correct?
If I remember correctly, your Mother's Power of Attorney wasn't allowing you to visit your Mother. Were you able to visit her while in ICU?
Hospices don't operate in a vacuum. They work with the family members. I agree with what phoenix said about dealing with issues you don't like and changing them, stead of looking for someone to blame after the fact.
I do feel hospice hastened my mother's death .
The hospice could sue you for libel
She had strong vitals and she was very alert.
But that does not mean she was going to get well
They kept a ventilator on her for a prolonged 2-3 wks while the nose cannula was working just fine.
White blood cell count was lowering, so she was recovering from a colostomy at 89,
One does not follow the other low white cell counts indicate viruses/cancers/bone marrow disorders or a mixture of these
but the POA other daughter continued to rush her death along with a co-chair of my church council who knew the hospital staff in ICU as my mother was killed in a few days after recovering well in ICU without any arrangements made for hospice as she was deprived of everything including pain meds and tortured in pain to death IMO
You are honestly trying to tell us that a church council member and your sister conspired with hospital staff and the hospice to kill your mother?
You know what I actually hope they read your post and do sue you. Your attitude and the continuing negative comments about hospices must be striking fear into the hearts of people whose loved ones are terminally ill when this site is designed to support them.
I am by no means saying all hospices are fantastic they aren't but neither are they torture chambers. My advice would be look around find one that you feel comfortable with and monitor it and DEAL WITH ANY ISSUES immediately in writing. Don't sit and grieve after the event when you didn't work hard enough to deal with it during the event.
Care designed to give supportive care to people in the final phase of a terminal illness and focus on comfort and quality of life, rather than cure. The goal is to enable patients to be comfortable and free of pain, so that they live each day as fully as possible.
Now if you don't want your loved one to be comfortable and free of pain then fine go ahead and whinge about hospices. You have no idea of the pain your loved one might be in nor of the rationale behind the doctors prescription.
Finally put a business head on....just for once.... two businesses both hospices both caring for terminally ill. One has a business where people are brought in live about 4-6 months then die free of pain. One has a business where people are brought in and live about a week then die free of pain (or not). Now which one is likely to be making the money? For sure it aint the one where they die after a week. the deep clean, the form filling plus everything else they have to do would be so time consuming that they would go out of business let alone the loss of reputation (or the gaining of a bad one)
In the final stages of life the roller coaster becomes deeper and more irregular than ever. The change from fine to critical can happen in minutes and there is no way you could expect 24/7 care and even if it was there sometimes there is little they can do except relieve pain. THERE IS NO CURE TO TERMINAL ILLNESS - the big clue is in the word TERMINAL.
So can we let this rest please? If you have a gripe you should have reported it to the police and it would have been investigated. If it was investigated and nothing was found - accept it the police are not in cahoots neither are the investigators