Hospice Almost Killed My Father Who Was Not Terminal!

The Following letter I sent to Hospice 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 Hospice. It has now been 8 Months since my father went to Hospice. 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 Hospice social worker**** LCSW told me this admitting to Hospice 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 Hospice 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 Hospice had of terminal illness was signed by the Hospice Physician on admission. My family was never told by Dr *** my father was terminal. I don’t understand how the Hospice physician could sign a certificate of terminal Illness when he had never seen my father. The Hospice Physician had no medical records from my father’s physician. Hospice never talked to my father’s physician.
Hospice never attempted to contact my father’s attending Physician Dr **** Hospice regulation states Hospice Physician must contact the attending Physician Dr ****, to discuss my father’s case. Hospice 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 Hospice he was still receiving active chemotherapy, and he had a radiation appointment set up as the same day as the admission to Hospice. My father even drove himself and my mother from Hamden to Branford and walked into Hospice. When my father left Hospice to go to Saint Raphael he was unable to walk and was not coherent. A week before getting admitted to Hospice 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 Hospice. There was never any talk of discontinuing chemo treatment. The Hospice 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 Hospice social worker **** writes in my father’s summary notes. Patient did not express a full understanding of DNR or his health status. Hospice did keep him as a DNR status even though he didn’t express a full understanding?
My father told me Hospice 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.
Hospice 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 Hospice 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 Hospice 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 Hospice staff my father went to Saint Raphael Hospital in January 2010. My father had the same reaction to medication,when he was admitted to Saint Raphael Hospital. As soon as Saint Raphael Hospital took him off the medication my father returned to his base line and continued with every day normal activity’s.
The Hospice nurse shook her head and said no. this time it’s not the same it’s caused from his terminal illness.
The Hospice 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 Hospice was 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 Hospice put my father in diapers, My father never wore diaper’s before this. He always walked to the bath room Hospice 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. Hospice 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 Hospice 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. Hospice told my family my father has all the signs of dyeing he was at the end of life. I told Hospice 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 Hospice nurses said they see it all the time. My father’s mouth was now hanging open due to lack of food or fluids.
The Hospice nurses thought we were in denial. When they actually knew nothing about my father or his prognosis I told the Hospice 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. Hospice 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 Hospice and walked in The nurse said one day there driving the next day there gone,it happens so quick.
Every day the Hospice staff were trying to prepare us for my father’s death. We had no idea Hospice 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 Hospice Doctors to lower the dosage or discontinue the medication, so we could take my father home. Hospice 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. Hospice 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. Hospice 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 Hospice must know more about my father’s prognosis then we did. Most medication was given at night, the Hospice 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 Hospice 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 Hospice admission. **** told us ( Hospice 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 Saint Raphael 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 Hospice 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 Saint Raphael 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 Saint Raphael. We took him off the DNR status when he arrived at Saint Raphael. When my father left CT Hospice to Saint Raphael Hospital. 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 Hospice then transferred to Saint Raphael for Radiation and Detoxed from Morphine then went to Sister Anne Grimes Rehab Center. The whole bill was around $70,000. My father lost at least one month of Quality life because he was admitted by mistake to Hospice. 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 Hospice? Dr **** said “I didn’t send your father to Hospice, I didn’t even know he went into Hospice.”. That’s when we found out he was admitted to Hospice by the RN ****.
***** is the Hospice Social worker who came to my parent’s house on June 24,2010. I showed **** the list of medications that Hospice 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 Hospice. 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 Hospice 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 Hospice. 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 Hospice. 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 Hospice. He now has to use a cane that he never used before Hospice. 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 Hospice visit he use to meet them every week.
I treasure every day and moment I have with my father. I can’t understand how Hospice made such a terrible mistake. I wonder how many other patient’s were euthanized at Hospice. Hospice 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 Hospice. Hospice is not above the law. This case is a perfect example of how Hospice 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 Hospice 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 Hospice 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.
Hospice lacked the ability to realize the mistake and to correct it. Hospice 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. Hospice 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.
Hospice 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.
Hospice 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,

*****