My Dismal Experience with Hospice
What happened to my wife, Lucy, in hospice
I am Dennis Barry, almost 84 years old. I want to tell you my story.
Although quite healthy otherwise, she lost much of her kidney function and for a while she underwent dialysis, which proved to be a rather physically draining procedure for her. In addition, more often than not, there were incompatibility issues with the dialysis machines. We finally made the decision to cease this treatment which, of course, resulted in the subsequent buildup of toxins in my wife's body and its accompanying effects such as mood swings, emotional fluctuations, etc.
On September 23rd, 2015 while having breakfast in the morning, she suddenly pushed her wheelchair back. I must not have secured both wheels and the sudden movement caused her to slide off the chair onto the kitchen floor beneath the table. I called a neighbor to help as I could not get her up myself. My neighbor and his wife helped her up into her wheelchair. She was not hurt in any way.
For approximately two to three months previously, we had accepted home help visits from hospice at the suggestion of our primary care physician.
At the time of my wife's fall, I was on the telephone with a hospice social worker - this in fact may have perhaps triggered my wife's sudden movement, she having become irritated with my being busy on the telephone. The hospice social worker overheard the commotion caused by my wife's fall and in the course of conversation suggested a three-day respite at their facility, and we accepted.
Two hours later, a nurse visited my home and took the information she needed for the purpose of providing the respite care. She left about 4:00 p.m. and said that an ambulance would pick Lucy up in about one and a half to two hours. Twenty minutes after she left, the ambulance arrived. We were not really ready. At that time, Lucy had asked me for a snack as she was hungry and was in the process of eating.
An emergency medical technician from the ambulance came in and rudely urged my wife to hurry up on to the gurney. My wife was quite strong and at this pressured insistence, jumped up on to the gurney. Unfortunately I allowed myself to be manipulated and allowed the lady EMT to control the situation.
On the way to the hospice facility, I sat in front with the male driver. Lucy asked the question, "How far is it?" I said, "We're almost there -- just another five-to-ten minutes."
When we arrived, I saw that there was a long narrow hallway and they carried Lucy through it, walking very fast. I could see two women approaching us from the opposite direction. Then two more joined them and when we got to Lucy's room, I was behind the gurney.
I started to enter the room to be at my wife's side when one of the girls stepped in front of me and prevented me from entering with her hand! She authoritatively said, "You can't enter into the room. Sit over there in the hallway." I never heard my wife's voice after that!
I noticed there was much activity in the vicinity of my wife's room with staff entering and exiting the room several times for about twenty minutes. I was then allowed to enter the room. Everyone had left. My wife was laying flat on her back in the same clothes with which she left home. Ludy's eyes were closed. I tried to shake her hand but both her hands were limp! I was very surprised and did not understand. She appeared to have been drugged into unconsciousness. It was a shock for me to see my wife in this state.
Shortly thereafter a woman came into the room and said, "Your wife will be okay. How are you going to go home." My answer was, "I just got here." "But you don't have a car," she said. "One of our workers is leaving at 7:30 p.m. She lives out in your area. She will come and talk to you about going with her."
Then I said to her, "I thought I could stay here." And she said, "Maybe it would be good for you to go home and get a good night's sleep, and there will be another girl who can pick you up at 6:00 o'clock in the morning."
Well, a girl picked me up at home the next day and I was over at the facility by 7:00 a.m. bringing along with me a few of my wife's clothes together with my pajamas and a change of underwear. My wife was in the same position as she was the previous night and in the same state. I tried speaking with her but there was no response at all!
No one else was in the room. About an hour later a worker came in and I questioned her as to whether a doctor had seen my wife. She said that that was not the case but that one would visit her in about an hour.
At about one o'clock an older lady doctor entered the room and as I began to speak with her she cautioned against doing so saying that my wife could hear me and suggested we speak outside the room - which we did, in the corridor. I mentioned to her that I did not like the state my wife was in, and she tried to reassure me that Lucy would be alright and that she would come out of the coma. That was the end of the doctor's visit. She did nothing but visually examinate Lucy from the foot of the bed and talk with me -- altogether she was there about eight to 10 minutes.
When the doctor left, I re-entered the room. A staff member came by and administered a small dose of some liquid medicine. She never told me what it was. She asked me if I was hungry and informed me that there was a cafeteria in the facility. As I did not want to leave my wife, she brought me a sandwich and a drink.
At about four o'clock, the same staff member came in and was about to administer another dose to my wife when I questioned her as to the reason for this second dose as the first was administered only about two hours previously. At that she desisted from administering this second dose.
From then on, it was quiet. No one was in the hallway. The nurses did almost nothing for my wife except give her those liquid medications. At approximately 6:30 p.m. the girl who took me home the night before came in and said that she would finish her shift in about an hour and a half and would take me home.
I told her again that I really wanted to stay overnight with my wife, and she said that I would not want to do that. All the while I was there I was constantly next to Lucy, holding her hands, kissing her occasionally on the lips or cheeks, showing her some affection in different ways. There was no response from her!
Sometime earlier, I had called my brother and he had informed his daughter, a nurse by profession. She came over to the facility and on entering the room, remarked, "Oh they have her in a coma." We talked for about an hour. The worker came to pick me up but my niece said that she would take me home in a little while. When we left, it might have been about 7:45 p.m.
The following day, the 25th of September, at approximately 5:50 a.m. someone called and said that my wife had passed on at about 5:47 a.m. And I said, "Why didn't you call me." The person said, "It happened very fast." I questioned her as to the circumstances surrounding my wife's passing and she said that the worker who was in the room at that time heard Lucy say, "Watch out for my baby."
The sudden imposed death of my wife at Hospice when she would certainly have lived longer and died a natural death, leads me to believe that the drugs and dosage used were administered by hospice with sinister intent and not with a view to benefit her health in any way.
I read that the FDA mandated a "black box warning" for Haldol indicating that when it is given to elderly patients with dementia, the patients have almost a doubled risk of premature death than if they're not given that drug! I read that, "Haldol is not approved for use in older adults with dementia because of increased chances of death during treatment." My elderly wife had some dementia. She should not have been given it, did not want it, and the hospice staff never asked our permission for it to be administered.
I note that a possible serious effect of Ativan (also administered to my wife at hospice) is strong sedation and my wife -- who was completely alert before entering the hospice facility -- was now clearly in a medically-induced coma which my niece who is a nurse verified. Lucy could not speak to me at all and I could not speak to her! We never requested Ativan and she didn't need it. They never informed us it was going to be given.
I also see that Hydromorphone (administered as well to my wife at Hospice) can sedate patient but also result in respiratory depression and death like any opioid given when not needed. We never requested it and she didn't need it. They never informed us it was what was being given.
For all these reasons, I would never recommend Hospice to a soul. This was my experience with hospice. It was certainly not what we expected at all!
Note from Ron Panzer, President, Hospice Patients Alliance:
Our heart goes out to Mr. Dennis Barry of New York whose heart is broken by how his wife, Lucy, was treated. Although she did have a terminal illness, chronic kidney failure, she was not imminently dying and may have lived several weeks or more. She had some kidney function still remaining which is clear when we consider she had lived quite a while without the dialysis.
Mr. Barry called me a year after his wife's premature death, still terribly upset and grieving due to the horrendous way she was made to die.
Although she had been receiving dialysis and then stopped, she was far from having entered the active phase of dying and was quite lucid, alert, eating and drinking and talking before she entered the facility. She even jumped up on the gurney when requested to do so by the EMTs! That is not what we see in someone who is about to die!
The hospice facility staff promised to provide "Respite Care," a temporary help not to end her life! Respite Care is intended to provide a period of time when family caregivers can get rest from the demands of providing care to the patient. The patient is expected to go home to live after receiving respite care, and that was the promise given to Mr. Barry when they agreed to have Lucy go to the hospice facility. The facility did not provide "respite care," but actively worked to end Lucy's life with unwanted drugs.
Every healthcare facility is required to inform the patient or patient representative (Mr. Barry in this case) about any medications or treatments that are to be given or have been given. They are required to explain why they are being given, and the patient or representative always has the right to refuse.
In this case, the hospice staff did not explain that when Lucy would be transferred to the faciity, that she would be drugged into a coma, that she would receive Haldol, that she would receive Ativan, and that she would receive Hydromorphone. They did not explain that the combined effects of these medications would render Lucy unconscious, comatose, unable to function in any way or take in any food or water, and that respiratory depression and eventual certain death could occur.
They did not explain that having been rendered unconscious and not taking in water, the drugs would have an increased harmful effect. For example, haldol can result in kidney failure. Lucy already had significant kidney failure with reduced function. Taking the contraindicated Haldol could have further destroyed whatever renal function Lucy had at that time, pushing her over the edge into death.
Lucy was not complaining about any pain and neither Lucy nor Barry ever requested strong, opioid medications like Hydromorphone. Giving such opioid medications when there is no clinical indication for that medication is known to cause serious adverse effects such lower blood pressure, unconsciousness, slower respiratory rate and cessation of breathing.
Again, we must emphasize that patients have rights to be informed of every treatment and medication given, its intended benefits and possible adverse effects. They also have the right to refuse. In this case, according to Mr. Barry's statement to the public, Lucy's rights were completely disregarded with death being imposed on her within that hospice setting.
Hospice is expected to never hasten death even though it does not attempt to cure what is incurable.
Contrary to Wesley Smith, JD and Ira Byock, MD's assertions that imposed deaths are not occurring in hospice settings, Mr Dennis Barry says that this is what happened to his dear wife, Lucy!
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