Hospice Almost Killed My Father Who is Not Terminal (parent, relative, grandmother)

[ctmaryb]

Hospice Almost Killed My Father Who Was Not Terminal!
Posted Today at 06:38 PM by ctmaryb
Updated Today at 07:05 PM by ctmaryb (Forgot to block the name of Dr's and Nurses)
The Following letter I sent to Moderator cut: not allowed in Sept 2010 about admitting my father with no certification of Terminal illness. Hospice has done an internal investigation and doesn't know how my father got into Moderator cut: not allowed It has now been 8 Months since my father went to Moderator cut: not allowed . My father is home with my mother and is still in active Chemo treatment. He now uses a cane to walk.

I don’t even know where to begin this letter. The unfortunate mistakes that were made almost cost my father his life. As the Moderator cut: not allowed social worker**** LCSW told me this admitting to Moderator cut: not allowed was the perfect storm. Everything that shouldn’t have happened in caring for a patient did happen.
My father’s CAN Nurse *****RN from *** Home Care. Told my family that Dr. *** his Oncologist wanted my father to go to Moderator cut: not allowed for pain management. She said Dr. **** said my father would only be there for a couple day stay for pain management. Dr. **** didn’t know anything about my father’s Hospice admission. The CAN nurse sent him there without a Attending Physician Certification Letter of Terminal Illness diagnose or permission from my father’s doctor.
The only letter Moderator cut: not allowed had of terminal illness was signed by the Moderator cut: not allowed Physician on admission. My family was never told by Dr *** my father was terminal. I don’t understand how the H Moderator cut: not allowed physician could sign a certificate of terminal Illness when he had never seen my father. The Moderator cut: not allowed Physician had no medical records from my father’s physician. Hospice never talked to my father’s physician.
Moderator cut: not allowed never attempted to contact my father’s attending Physician Dr **** Moderator cut: not allowed regulation states Moderator cut: not allowed Physician must contact the attending Physician Dr ****, to discuss my father’s case. Moderator cut: not allowed would have saved my father a lot of pain and suffering if they followed their own regulations.
On May 14th 2010 when my father was admitted to Moderator cut: not allowed he was still receiving active chemotherapy, and he had a radiation appointment set up as the same day as the admission to Moderator cut: not allowed . My father even drove himself and my mother from Hamden to Branford and walked into Moderator cut: not allowed . When my father left Moderator cut: not allowed to go to Moderator cut: not allowed he was unable to walk and was not coherent. A week before getting admitted to Moderator cut: not allowed in May 2010 Dr.**** my father’s radiologist told us he thought the radiation would take care of my father’s pain and it did.
My father was not terminal ill when he went to Moderator cut: not allowed . There was never any talk of discontinuing chemo treatment. The Moderator cut: not allowed physician Dr **** and Attending physician documented my father as being terminal ill. Dr**** never told us my father was terminal or any other doctor. The only information Dr.*** had about my father was from *** the RN.
May 14,2010 On admitting **** RN had my father sign a DNR consent form. The same day the Moderator cut: not allowed social worker **** writes in my father’s summary notes. Patient did not express a full understanding of DNR or his health status. Moderator cut: not allowed did keep him as a DNR status even though he didn’t express a full understanding?
My father told me Moderator cut: not allowed tried to get him to sign a DNR form. My father said “why would they want me to sign that? What are they crazy a course I want them to do CPR.” He thought it was a crazy thing to ask him. We were told my father was there for pain management for a couple of day’s my father knew exactly what his health status was.
Moderator cut: not allowed did not talk to any of my father’s Physician they just assumed my father was terminal. It is unethical for a Physician to sign a patient as terminal when there not. They were signing him a death sentence for him.
My father’s admission on May 14, 2010 summary notes said “Patient alert, oriented, and pleasant.” On admission they asked my father what his pain level is he said “4-5” but he said “I don’t need any pain medication.” I told the Moderator cut: not allowed nurse I don’t think my father under stands the pain scale.
May 15, 2010 It was very clear my father was not in unbearable pain. He was watching horse racing on TV and betting the outcome on the phone with Off Street Betting. He picked the winner in the Kentucky Derby and was very happy. The Moderator cut: not allowed nurses would come in see him reading the paper and watching TV and ask him are you in pain? I asked several of the nurses does he look in pain? You could see he was very comfortable with no pain yet they continued with the pain medication.
At the first family meeting I told the Moderator cut: not allowed staff my father went to Moderator cut: not allowed Hospital in January 2010. My father had the same reaction to medication,when he was admitted to Moderator cut: not allowed Hospital. As soon as Moderator cut: not allowed Hospital took him off the medication my father returned to his base line and continued with every day normal activity’s.
The Moderator cut: not allowed nurse shook her head and said no. this time it’s not the same it’s caused from his terminal illness.
The Moderator cut: not allowed doctor’s and nurse’s would not listen to me or my mother that the medication was causing the agitation symptoms. I told them all the side effect’s are from all the medication Hospicewas giving him. They asked me what his base line was I told them perfectly normal. They refused to believe me. No attempts to decrease the medication was made.
It wasn’t long before Moderator cut: not allowed put my father in diapers, My father never wore diaper’s before this. He always walked to the bath room Moderator cut: not allowed restricted him to his bed and if he did not comply they would sedate him more with Morphine, Ativian, Thorazine, Trazadone, Haldol. Until he was chemically restrained to his bed. The medication were given not for pain but to control my father’s behavior from leaving the bed or to walking to the bathroom. Moderator cut: not allowed took my father’s dignity away from him.
May 17- May 26, 2010 Any break through’ were given by the nurse’s or doctor’s. My father did not have access to the PCA morphine pump for most of his visit. My father would turn it off so the nurse’s put my father’s pump and button behind his bed so he couldn’t reach it. There is multi times the pump was pushed by the nurse’s for breakthroughs, mostly at night.
My father asked several times to go home. His wishes were denied and ignored as stated in the summary notes.
I stopped at Moderator cut: not allowed one night the second week of his stay. There was a young nurse taking care of him. My father was put in the family room by him self. I asked the nurse why they don’t use bed alarms she said “We use medication as restraints. You don’t see any restraints do you?”
That same week I stopped in after work around 11:45PM to see him again he was not in his room, he was in the family room again by himself. I tried to ask my father’s nurse a question she was very upset and flustered. She said “he’ll have to wait, I’m the only nurse on tonight.” You could see she was not happy about her assignment. She told me the other nurses called out of work. I’m assuming they were short staffed.
When the nurse told me they restrained the patient’s with medication. I realized my father was being over medicated. He was not dyeing from Cancer but from being over medicated and dehydrated. Moderator cut: not allowed told my family my father has all the signs of dyeing he was at the end of life. I told Moderator cut: not allowed the agitation, sleeping more, and not eating or drinking all were side effects from the medication. The nurses told us this was normal terminal restlessness, end of life agitation. The nurses told us my fathers body was shutting down and preparing for death. The Moderator cut: not allowed nurses said they see it all the time. My father’s mouth was now hanging open due to lack of food or fluids.
The Moderator cut: not allowed nurses thought we were in denial. When they actually knew nothing about my father or his prognosis I told the Moderator cut: not allowed staff my father just had a full nuclear bone scan on April 30, 2010. I offered to bring it in they said they already had the bone scan results. I told them the cancer was mostly in the lower back and that was his only area of pain. Every day I would tell the nurse” you know were only here for Pain Management. Moderator cut: not allowed would not listen to my family and instead kept giving us end of life counseling. I kept telling the nurse my father drove down to Moderator cut: not allowed and walked in The nurse said one day there driving the next day there gone,it happens so quick.
Every day the Moderator cut: not allowed staff were trying to prepare us for my father’s death. We had no idea Moderator cut: not allowed had signed the paper work to say my father was Terminal Ill. We thought we were only there for Pain Management.
I would ask every day, for the Moderator cut: not allowed Doctors to lower the dosage or discontinue the medication, so we could take my father home. Moderator cut: not allowed would agree and the next day they would still continue with overmedicating him again. They had him on a PCA Morphine pump continuously and they were giving him Haldol, Trazadone, Thorazine, Assign, Morphine PO. Moderator cut: not allowed did not give my father Informed Consent for the Psychotic medication.
On May 22, 2010 ***RN wrote in the summary notes, “11:15PM pain is 8-10. Patient ambulating to bathroom, climbing out of bed, pulled PCA button out. Hanging legs through rails, very restless, and confused, spilled urine in bed, calling for his wife. I can’t imagine how scared my father must have been he was calling for my mother. Trying to get out of bed to go home. Instead of helping him they put him in the family room by hi self. Moderator cut: not allowed kept giving my father medication until he was unresponsive.
I would hate to think that my father was medicated for climbing out of bed and walking to the bathroom and spilling urine in his bed. I would assume an experienced nurse like Mildred would know the difference between 1-2 pain and 8-10 pain my father was not screaming in pain he was scared to death and calling for my mother. If my father had 8/10 pain he physically would not be able to walk to the bathroom or hang his legs through the rails. No patient should be restrained with medication for the convince of the nursing staff. My father was clearly not being medicated for pain management.
The next morning May 23,2010 we were unable to wake my father up, he was unresponsive all day and night. My mother felt at the time Moderator cut: not allowed must know more about my father’s prognosis then we did. Most medication was given at night, the Moderator cut: not allowed staff constantly informed us my father was about to pass away. They were always giving us continuing teaching of end of life, and thought we were in denial.
I told the Moderator cut: not allowed doctors my father’s cancer is in his bones and not in any major organs. My fathers heart, lungs, kidneys, liver, lymph notes were all normal. I am sending the summary from Radiation Oncology. The only pain he has ever had was in his lower back. I told the nurse we saw Dr.**** a few weeks ago. Dr **** set a radiation appointment up for the same day as the Moderator cut: not allowed admission. **** told us ( Moderator cut: not allowed CAN Nurse) that Dr.**** said” To for do pain management first, then do the radiation.”
The social worker **** wrote in summary “Wife will need continued gentle teaching plan of care, as she seems to have difficulty fully processing the complexities of patient’s needs, will continue teaching.” On May 24,2010 I told the nurses I was concerned about the PCA Pump and all the other Psychotic Medication being given to my father. At 12:00AM Summary note say’s patient anxious and stripping, attempted to Climbing out of Bed. By the evening Patient Hallucinate, patient delirious ,thinks he’s at the race track.
In the early morning of May 26,2010 Summary notes Combative and verbally inappropriate,When I asked for the 2nd Family Meeting my fathers nurse was ***** LPN. She was my father’s nurse on May 16, 2010 and saw him on the second day’s of his admission. I could see she was very surprised how rapidly my fathers health condition declined. I wanted my father to be transported to Moderator cut: not allowed immediately. I declined the 11Am Morphine for my father. I didn’t think he could survive much longer at Hospice.
May 26,2010 Dr writes in summary after family meeting. They are not satisfied with level of pain control or treatment of his mental status especially at night time, confusion,agitation.
After the family meeting Ralph LCW writes in summary. Family struggling in understanding patient’s declining condition. They question patients current status as disease progression vs Medication vs Decondition. Family requested transfer to Hospital for diagnostic scans and possible treatment. Up until the end Moderator cut: not allowed continued to think we were in denial.
A few minutes before we were leaving for Saint Raphael. Hospice asked me to sign a DNR in case anything happened to my father in the ambulance ride to Moderator cut: not allowed Hospital. I said I know my father doesn’t want DNR but he’s already half dead at this point. They put a red bracelet on him for the ride to Moderator cut: not allowed . We took him off the DNR status when he arrived at Moderator cut: not allowed . When my father left Moderator cut: not allowed . My father was not coherent,he was lethargic and not ambulatory, he was transferred by stretcher and ambulance.
My father spent over a month from May 14 to June 17, 2010 in three hospitals. Going from Moderator cut: not allowed then transferred to Moderator cut: not allowed for Radiation and Detoxed from Morphine then went to Moderator cut: not allowed . The whole bill was around $70,000. My father lost at least one month of Quality life because he was admitted by mistake to Moderator cut: not allowed . He will never regain the freedom or quality of life he once had.
When my father went for his chemo appointment with Dr*** in June 2010. I asked Dr **** “Why did you send my father to Moderator cut: not allowed ? Dr **** said “I didn’t send your father to Moderator cut: not allowed , I didn’t even know he went into Moderator cut: not allowed .”. That’s when we found out he was admitted to Moderator cut: not allowed by the RN ****.
***** is the Moderator cut: not allowed Social worker who came to my parent’s house on June 24,2010. I showed **** the list of medications that Moderator cut: not allowed gave my father. I asked her is this Pain Management or end of Life Care? she said “Definitely end of Life care.” I asked **** does he act like he has dementia or Alzheimer She said “no”
When my father finally got home after one month I contacted **** Director of Quality Management at Moderator cut: not allowed . She had no certification record of my father’s attending Physician or certification of terminal illness diagnosis for my father. **** said she didn’t know how he got admitted with no certification letter or Dr **** approval. She would investigate it and get back to me in six weeks. I told *** what **** had said about the medication was for end of life care not pain management.
I told *** the story about my father’s nurse at night who said Moderator cut: not allowed uses medication as restraints. You don’t see any restraints do you? *** said I think I know who that was. *** never denied using medications as restraints. I received a letter from *** on Aug 4,2010 saying they completed the investigation, to call her to set an appointment up.
I’m sending copies of my father’s blood work from May 12, 2010. My father was admitted two days later to Moderator cut: not allowed . I have also included the recent blood work from Aug 6, 2010. Not much has changed except his White Blood count is now in the normal range.
Today my father is pain free September 16, 2010 and is not taking any pain medication. Today my father is continuing active treatment of chemo and radiation. Our family has never even considered stopping treatment at any time. At his last appointment he gained another five pounds back.
I have no doubt my father would have died in a few more day’s at Moderator cut: not allowed . I thank God the nurse told me they use medication as restraints.
I’m enclosing pictures of my father from September 6, 2010. My father will never have the same quality of life before Moderator cut: not allowed . He now has to use a cane that he never used before Moderator cut: not allowed . You can see the joy in his face and the quality of life he has enjoying his family. Last week was the first time my father was able to drive him self to meet his friends for breakfast like he did 4 months ago before the Moderator cut: not allowed visit he use to meet them every week.
I treasure every day and moment I have with my father. I can’t understand how Moderator cut: not allowed made such a terrible mistake. I wonder how many other patient’s were euthanized at Moderator cut: not allowed . Moderator cut: not allowed talks about Dignity and respect they didn’t show my father neither.
I want something good to come out of this tragic story. Someone needs to start regulating Moderator cut: not allowed is not above the law. This case is a perfect example of how Moderator cut: not allowed manipulates the families into believing their loved one is at the end of life. Know one deserves the treatment hospice gave to my father. I know Moderator cut: not allowed would have ended my father’s life. They told me he was dying and they were going to make sure he did. Can you imagine if this was your father or mother? This whole story is unbelievable. How could this have happened?, and for some reason I just can’t let this go. I think about this constantly. All the elderly people calling for help and no one is listening?
The errors Moderator cut: not allowed made
1. Information in the comprehensive assessment were not correct. The care does not reflect Standard care of practice.
Admission to Hospice without a Physician Certification or Certification of Terminal Illness.
Patients status changed and was not updated in Comprehensive assessment to reflect change.
Moderator cut: not allowed lacked the ability to realize the mistake and to correct it. Moderator cut: not allowed did not make appropriate decision on Medication use.
Billing Medicare for procedure that should not be covered. Admission summary notes 5/14/10 Patient reported desires possibility for further treatment after pain management. Moderator cut: not allowed knew my father was still in active treatment.
Using Medication to Control and restrict my father’s freedom of movement that is not standard treatment for patient’s medical condition. The service provided was not consistent with the plan of care.
Moderator cut: not allowed putting my father in seclusion of the Family room against his will. He was ignored when he called out for my mother and said he wanted to go home. He was moved to the Family room six nights and returned to his room at 7AM.
Moderator cut: not allowed failure to contact my fathers attending Physician to discuss admission or treatment plan.
Not following CT Regulations of Admission.
The plan of care did not reflect the patient’s or family goals.
Using chemical restraint to silence and control,complaining and annoying patients. Giving excessive psychotic medication and sedative to keep him quiet.
Having my father sign a DNR and then the social worker writes patient does not understand the full meaning of DNR.
Dates my father was put in Family Room and Heavily sedated

May 16,2010 Patient put in Family Room between 11PM-7AM Nurse: ***
May 18,2010 Patient put in Family room. between 11PM-7AM nurse: ****
May 21,2010 Patient put in Family Room between 11PM-7AM Nurse: ****
May 22,2010 Patient put in Family Room between 11PM-7AM Nurse: ****
May 25,2010 Patient put in Family Room between 11PM-7AM Nurse: ****

Please contact me with any questions.
Sincerely,

*****

[zentropa]

I am sorry, but no one is going to read that. What was your purpose in posting it?

[Laura707]

Wow! That is a STORY!!!

I do have to ask, did you ever call his doctor and ask WHY he was sent to Hospice? Why is he STILL there? WHY he is being so heavily sedated? I have never heard of anyone being sent to hospice for pain management and that would have set off alarm bells for me.. and I would have been on the phone with his regular doctor asking tons of questions every day.

Have you looked into filing charges against the nurse who took this on herself to do this to your Dad. What she did was took him there to kill him, that's what it sounds like to me!

I would be reporting this story to the news and raising such a ruckus about this that the world would know, talking to lawyers and get some kind of justice for him.. and THEY would be paying the bill to undo what they did to him..

Hospice is a good organization and does great work, this ONE nurse caused this, and should be in jail not only for what she did to your Dad but for smearing Hospices reputation.

Go find a good lawyer!

[MIKE2015]

this hits home for me.my grandmother raised me most of my life and back in 2002 i was getting moved into a new place and staying in a motel when my family put her in a nursing home.i then went there to sign papers to get her out of there as soon as possible.well a couple weeks later i'm moved into my new place and i have one week until my grandmother is officially released from this place.everytime i went to see her they had her so doped up on medicine it broke my heart.then a couple days before i was suppose to sign her out she passed away.i was seriously looking into a lawsuit against that nursing home.i know whatever it was they were giving her was slowly killing her no doubt.i would not dare ever put someone i love in a nursing home ever again.

[kmalone4]

Hospice is only for terminal patients with a life expectancy of 6 months or less. In this case, it seems the ball was dropped very early as he should have never been in hospice in the first place.

[grannynancy]

Here are the federal rules pertaining to hospice care

Electronic Code of Federal Regulations:

I almost wonder if the doctor was doing something screwy by putting him in hospice so he could get the palliative care not normally covered under Medicare......but by being placed into hospice, curative care is no longer covered ......(such as radiation treatments for cancer)

[ctmaryb]

When my mother told me the home nurse talked to my father's Ocologist and he wanted my father to go to Moderator cut: not allowed for pain management. I told my parents Moderator cut: not allowed doesn't do pain management. The home care nurse was at my parents house at the time I called. The home care nurse told me over the phone people go for Pain management there all the time. I told her my father had a radiation appointment the same day she wanted him to go to Moderator cut: not allowed . I told her the radiologist saw my father last week and he said the radiation would take care of the pain. I told her I thought my father should go for radiation and if that doesn't work then try Moderator cut: not allowed for pain management. I thought that sounded like a better plan. She told us this is what the Dr wants to do it and he would only be there a couple days. My parents are older and believe doctors are God. When I called to cancel the radiation appointment. The nurse asked why was I canceling the appointment. I told her the Oncologist wanted my father to go for pain management first. The nurse said that doesn't make any sense I said I know but thats what the Dr wants. My parents always follow what the doctor tells them.

[grannynancy]

?? Pain management is what hospice is all about.??

When my father's cancer moved from the bone to his liver the doctor said - 2,3 months at best IF we do more chemo, maybe 1-2 months without ......my father opted for hospice as the writing was on the wall......

With hospice (in our home) my father was able to get drugs that there would be no way we could get under normal care. Liquid morphine for one. All was very closely monitored and inventoried but we were able to administer and nurses could come out much more often than under routine medicare

(For my mother, I have to PAY out of pocket for nurses to come to our house to do her protime, etc. but it beats taking a day off work and the stress on her of a doctor trip. She is not on hospice care though, but she does have a DNR...stroke survivor)

My was able to die comfortably on my sofa surrounded by all of us

-------------------------
It sounds like your talk needs to be with their doctor....the one who sent your father there.

[ctmaryb]

The Hospice my father went to is the first Moderator cut: not allowed in America. I have had three other relatives go to this same Moderator cut: not allowed . Each person was at the end of their lives, they were all terminal and had no quality of life. Do I think they were all over medicated?, yes I do. Do I think their life was shortened no doubt about it. The difference was they were all terminal. They had no quality of life they were in pain. I have no problem with the care they received. The staff were wonderful the place is clean over looking the beautiful sound. I think what happens sometimes the staff are on automatic Cancer-Pain-Drugs-Family Denial-Death.
If they had listened to us this never would have happened. The staff were spending all their time trying to convince us he was dying and we were in denial. From the first day the summary notes said "PT states that " I'll be fine and back to normal once my pain is controlled. PT. was not understanding of the serious nature of his illness with denial-states he has not talked with others about disease progression.
Every day I would tell the nurses you know were only hear for a couple days of pain management? They always said yes we know, My family and I want to know what happened??? Anyone that goes to hospice as a patient needs to find out what happened??
I have talked to a couple lawyers and yes I could sue them. At this time I'm not satisfied with their Internal Investigation. I need to know how this mistake happened.I want answers, I don't want another family to go through what we have gone through. I was very lucky that I realized what was going on.My father was very close to death when I pulled him out. I feel very guilty for not realizing sooner. I believed Moderator cut: not allowed when they said he was at the end. Why wouldn't I????

[AnonChick]

I got as far as your dad betting on the Kentucky Derby in your first post and stopped. I skimmed over your other posts to try and find the point of this thread.

You say he was happy that he picked the winner via phone at the OTB, of the Kentucky Derby, on May 14, 2010. The Kentucky Derby was May 1. It's ALWAYS the first weekend of May.

It sounds to me, like there are misunderstandings all over the place. It sounds to me, like Moderator cut: not allowed did what they were instructed to do, and felt that there was a lot of interference in their doing their job - which IS, in fact, pain management. It isn't merely pain management though. It's "pain management when all the patient has left in life, is pain, and it needs to be relieved so the patient can die in as much comfort as humanly possible."

Moderator cut: not allowed is where people go to die. That is its main function. The moment your dad was sent there, you should have questioned the doctor. Not the Moderator cut: not allowed people; they are -not- diagnosticians. They are pain management and end-of-life specialists. St. Rae's has a perfectly good pain management center, as does Yale. There would have been absolutely zero, zilch, nada reason for your dad's oncologist to send your dad to Moderator cut: not allowed , UNLESS your oncologist felt there was nothing left for your dad to do but die.

I'd take it up with the doctor.