[Note: The following is the account given by a professional whose boyfriend was denied rehabilitation and death imposed upon him in a hospice house. Because she was not named as power-of-attorney for health-care decisionmaking, she was unable to stop the process.
The patient here was not considered "terminal" but was in need of some rehabilitation therapy. Rather than provide therapy, he was placed in a hospice agency and his life was ended prematurely. He did not choose to enter this agency and his wishes were to have rehabilitation. When patients who experience disability, confusion or illness of various sorts are hastened to death, rather than getting the therapy they need, what does this say about our society and those who directly instigated the imposed death?]
What I Saw at the Hospice House
When my boyfriend retired recently, we had been together for nearly nine years. He was sixty years old and wanted to return to his home town so that he could spend time with his elderly mother who is in a nursing home. He had lived away from family for more than twenty years. He went back and moved into his sister's home temporarily, with the intention of making plans for the next phase of his life in which he also wanted to return to teaching.
In the Fall of 2009, he came to visit me. We were discussing our future plans. About 2 weeks into his visit, he received an emotionally-charged phone call from his sister saying she wanted him out of her house. Her call was baffling. He was devastated, and explained that he had never seen that side of her before. He also disclosed to me that he suspected his sister, and possibly her husband as well, was abusing prescription drugs.
In the last several years, she had regularly borrowed significant amounts of money from him for various reasons, one time supposedly to pay the mortgage, and there were other reasons she gave. He told me she had a history of mismanaging her own finances despite the fact that at one time she had a well paying job. Because he cared for her and had the money, he gave it to her.
He said they were close as children and he always willingly helped her during times of need. Because of the relationship he thought they had, he also named her as his power of attorney. My partner had a sizeable estate and as power of attorney, she had access to all his bank accounts and his lock box. He was very concerned after her call.
He then asked me to serve as his power of attorney (should anything happen). I regret not accepting his offer, but I was concerned that we were not married and wanted to avoid conflict with his family. He then decided to appoint his more stable older brother as power of attorney.
Because he was really upset by her call, he flew back right away to straighten things out legally. When he got there, his sister completely changed her behavior and said she didn't want him to leave her home.
My boyfriend had struggled with depression during his life but it never interfered with his career. He was highly successful, talented musically and theatrically, and had amazing achievements. In 2010, he suffered a Major Depressive, possibly Bi-Polar episode that put him in the hospital for 3 days and they put him on Risperidone. His older brother told me that upon his discharge, the sister took him to the lawyer's office and had him re-name her as power of attorney. He seemed to stabilize for a while.
After a while, his sister reported that his behaviors were becoming odd and he had stopped taking his medication. She took him to the hospital and he was admitted for treatment. He signed himself into the hospital, was aware of what was happening, and had been driving earlier that week.
For reasons that are unclear, they changed his medication to Zyprexa (known for potential to cause strokes) and within 24 hours of being there, he could not articulate words, move his limbs, or swallow, and became incontinent. Initially, his sister would not tell family members which hospital he was at! His brothers were concerned about the motives of their sister and didn't trust that she would get him the proper care. After several days of testing, they had begun to diagnose him with Dementia.
The sister then told her brothers the name of the hospital, and she called me to find out more about his medical history. She told me they thought he had alcohol-induced dementia, and I said that didn't make sense since he rarely had a drink. My boyfriend was a man who had been in impeccable health, was an avid runner until he moved back to his home town, was extremely health conscious in his eating and drinking habits and did not like to take any medication at all.
Shortly after my conversation with his sister, he was diagnosed with Lewy Body Dementia. They started him on Ativan to decrease anxiety and the Exelon patch (for dementia). At the end of May, 2010 the hospital discharged him to a rehabilitation center, but when he got there he was dehydrated so they sent him back to another local hospital. I flew out to be with him and see for myself how he was doing. He recognized me immediately, was thrilled to see me, and began discussing things with me that were very relevant to our life together.
In our discussions that night he told me that he could not move his legs and that he thought he had had a stroke. The next day the family arrived at the hospital; the sister and her husband seemed very uncomfortable with me being there. They would not leave me alone with my boyfriend unless it was very late at night after they went home.
He began eating ice cream and some soft foods while he was in the hospital and spoke a bit more clearly. The hospital discharged him to the rehab center after approval by the insurance company. We arrived there in the afternoon and got him settled in a room. A doctor came to the room and I asked questions about his diagnosis and medications. His sister exploded at me and told me that I needed to stop. At that point, I learned the sister was asking for a meeting with the Hospice House Coordinator.
I was stunned and asked her why she would be considering hospice. She said that she was just getting information and promised me that she would follow through with the 30 days of rehab. Finally, they sat him up in a chair for the first time since May and the speech therapist came in to assess him for speech and his ability to swallow. She barely touched his neck and he began to swallow normally. He also had begun to move his limbs again. I felt relieved at this point that we would at least have the 30 days to assess his abilities and he was already showing slight signs of improvement.
During this time at the rehab, the sister and her husband went to meet with their lawyer about my partner's finances. She described him to me as a "fast track lawyer." She would disclose other things to me such as cutting up my partner's credit cards and closing his cell phone account, etc., all this before he had a chance to be assessed and helped at the rehabilitation center. She obviously had made some decisions about what would happen to my boyfriend.
On Friday afternoon of June 4, 2010, the brothers arranged to take me to the nursing home for a visit with their mother who had been asking to see me. The brothers were very much aware of my concerns that my boyfriend would get the proper treatment and they seemed to be on board with me.
While we were visiting their mother at the nursing home, the sister called the oldest brother and told him that she was moving my partner to Hospice House that day. I was shocked, confused, and horrified. He didn't have a terminal illness! Why would the hospital recommend rehab if he was dying? He wasn't dying!
His mother asked about him, but the family limited the information they gave to her, and told me they didn't want her upset. They forbade me from telling his mother what was really going on with him.
Upon returning to the rehab, his sister looked at me so smugly, picked up her purse and without saying a word left to go to Hospice House. Everyone followed but her husband who seemed to be keeping a watch on me with my partner. I asked him what the plan was and he told me my partner had 8 days to live. I was shocked! I told him that I felt like I was watching Perry Mason and that I never needed anything from my boyfriend but his love.
At that point, he stormed out of the room and did not talk to me the rest of the time I was there. The ambulance was busy and hospice said they were too busy to admit him that night. The staff at the rehab center said they would not move him until the next day. I was relieved.
However, shortly afterwards, a nurse came back in and said his sister insisted that he be moved that night. I began crying and my partner lifted his arm to wipe the tears from my face. The sister's haste in arranging my partner's affairs was alarming.
The ambulance arrived at 10:00 pm to move him. My partner said, "Where are they taking me now?" My heart was broken. The paramedics asked if I would be following them over to Hospice House, and I told them I did not agree with the sister's decision to take him there and I would not be going that night. They were very understanding and kept the intravenous fluids going.
I was devastated as they took him away and the nurses and staff at the rehab came to be with me. They told me they did not agree with the sister's decision. They said they have seen many miracles occur during rehab. They took me to the chapel and stayed with me until I was able to drive back to my hotel.
The next day, I called my partner's nurse at Hospice House hoping to get some support and to find out my partner's room number. I also asked if I might talk to a social worker thinking they might be able to help me. It was Saturday so the social workers were not readily available. I met with the nurse when I got to Hospice. From the beginning, it was clear that she was not going to be in my camp.
Alarms were going off inside and my instinctive sense of danger told me something was really wrong. I became mistrustful of the staff and knew that I needed to be careful of what I said. Surprisingly, the nurse said that my partner met the criteria for being there. "How could that be?" I thought. She also said that clearly there was something neurological going on. I asked her where his intravenous fluids were and she said they took the IV out. She said that hospice does not think IVs are good for patients because of the edema they cause.
The hospice nurse explained to me that he would not get any kind of rehab but that he would receive "comfort care." She told me his sister was very concerned about me and let the staff know that I did not agree with her decision. Apparently, she had told them I was in "denial" about his so-called "terminal condition." At that point, I decided that the social worker most likely was not going to be an ally either.
I worked hard to get my partner to eat and drink to get him stronger. I went out and bought things I knew he liked and would eat. Within a week he was eating more, drinking lots of fluids, was articulating his words almost normally, and knew when he had to use the bathroom. They had put a catheter in and a pad on the bed for bowel movements.
He would ask things like, "Isn't there any real food around here?" They were primarily giving him ice cream cups and yogurt. He began to eat full breakfasts and dinners. But then the sister would say that he was agitated and ordered the drops of Ativan under his tongue even though I did not witness any agitation. It would immediately put him to sleep and then he would not eat or drink.
The hospice staff also never sat him up, dangled his legs, or got him out of the bed. I kept asking about this fearing he would get pneumonia or blood clots; everyone looked at me with a vacant stare and ignored my questions.
They were also giving him drops for pain now even though he told me he wasn't in pain except for lying in the bed. One of the young nurses said to me, "We look for the furrow in his brow and that tells us he is in pain and needs medication." It was unbelievable!
Although he may have had a minor stroke or "TIA", or even had dementia, there may have been adverse effects of the medications he had been on, and that was never investigated. Whatever his condition, he was able to have many coherent, intelligent conversations with me. He told his family three different times that he may have had a stroke and they would just negate it and tell him that he didn't.
I talked to the student doctor who was taking care of him and asked her about the need for the Ativan as it was putting him to sleep and about my concern that he could not eat or drink if he was always sleeping. Rather than respond to my concerns about his nutritional intake and need for fluids, the student doctor asked if I was unhappy with what they were doing at Hospice House. Although I had many misgivings, I told her they were probably doing what they were supposed to in hospice (I didn't know what to think) but that I thought it was very premature to put him in hospice, and that he did not belong there at all.
His sister flew out of the room and exploded in a rage at me again. I felt so shaken that I had to leave the facility for a while. I tried to ask nurses (when I would catch them without a family member present) if the medical staff noticed my partner's improvements with eating, drinking, moving his body as well as his conversation. I asked if they could recommend another placement beside Hospice. I got a variety of answers, such as, "you need to talk to the doctor and the family," or "Lewy Body Dementia is a very aggressive dementia," to which I replied that research showed that patients can live several years. That didn't make any difference.
Other hospice staff would just react blankly and tell me he just "needs to be at Hospice." I asked another doctor who told me that because he was responding to nutrition he would probably live "a few extra days" at Hospice.
I became more and more concerned. At his sister's request, they were giving him Ativan and pain medicine (which I then learned was morphine) much more often and he was sleeping more and more, and eating and drinking less. I was very concerned!
During this time, I called Right to Life who consulted with their attorney and they told me that I could do nothing because the sister was the legal POA. The tensions with the sister continued to get worse, plus I had a job that I needed to return to. So I flew back home with the intention that I would be back soon.
I began calling the night nursing station to avoid the family during the day and asked to talk with him almost daily. There were times he was very communicative and we had several relevant conversations. Then they began telling me he was sleeping so I couldn't speak to him.
One of the nurses let me know that they had put an intravenous port in that day so they could administer the Ativan and morphine that way rather than under the tongue. I questioned her on the need for such a severe measure in his case. Soon after that, they told me they were too busy for me to call at night and I needed to call during the day when the family was present. I was not comfortable having contact with the sister so that ended my phone communication with my partner.
My anxiety and concern increased greatly when I learned of the port for the medications. I made a series of phone calls trying to access help for my partner. I spoke with Elder Abuse and they told me they would not investigate it because the sister had the POA. I called Hospice Patients Alliance, Legal Aid, and Priests for Life (which also referred me to) the National Catholic Bioethics Center. The response was the same about the POA. They were very compassionate and supportive of my situation.
However, the man I spoke with at the Bioethics Center told me that I had to get my conscience right because this was not going to have a good outcome for my partner. He told me to make one last plea to his sister to get him the proper treatment, and I wrote her a letter asking her to do so. I also told her that I did not believe that her brother would be making this decision to go to Hospice under these circumstances.
Immediately after that, her husband sent me the most vicious letter I have ever read, telling me that I was venomous, in denial, that my partner knew not to make me POA and that I should not contact their family again.
It was a horror to be away from my boyfriend not knowing what was happening to him. I began checking the obituaries daily and thought I would try to learn from the social worker at the Hospice House about his condition only to find out that they had changed the pass code which gave them permission to discuss the patient's condition with me, so that I could no longer get any information.
A month or so later, I received an e-mail from the oldest brother's wife letting me know that my partner had passed away that night. That was it.
My beloved man had been in a bed for 3 full months with only morphine and Ativan treatment, their so called "comfort care." In my presence, I can tell you that he was anything but comfortable and he was so confused about what was happening to him.
It was agonizing to witness this and a nightmare to even think about. Whether he had Lewy Body Dementia or not, it is impossible for me to fathom that anyone who truly loved another and cared about their life would not offer them the opportunity of 30 days of rehab to assess their abilities, or try ordinary medical treatments.
I would never have imagined the collusion of the Hospice House medical staff in hastening my partner's death. There was no one there who questioned anything going on but me. My partner showed none of the physical signs of impending death during his initial stay at Hospice. His heart, lungs, kidneys, respiratory system, and all important bodily functions were working well. Something had happened to his brain. In my opinion, the very quick diagnosis of Lewy Body Dementia could very well have been inaccurate, especially since there were no tests that proved he ever had it and, they never gave him a chance to recover or see how he would do.
In any case, his sister denied him the 30 days of rehab he needed to properly evaluate his condition and help him recover. His brothers would not challenge the sister's decisions. Although we were originally told he had "8 days left," my partner lived a few months longer, which tells me this man I loved was healthier than they said. And the question remains, "what medical condition, if any, ended his life?
Before this, I never would have believed that "comfort care" means we leave you to die because you no longer are "worthy" to live.
This experience has been horrifying to me. It has awakened me to the possible future of so many. To have my loved one's life snuffed out in this manner has been extremely life changing for me. I will never be the same.
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