“Hospice kills!” that appeared on my website under what do you want me to talk about. At first I was surprised but then I realized that yes, some people actually believe that hospice kills. Upon refection I started asking myself why that is a perception? How did we get to the place where people think we kill our patients because they die.
My answer is multifaceted. It is in part because people don’t understand there is a process to dying from disease and old age therefore how a person dies looks awful and scary. It is because end of life care is different than caring for someone who is going to get better that we think the care being provided is causing harm. It is because our medical profession is perceived as fixing people, no matter how sick the person is. Hospice care has then failed, has let the person die when death comes.
We have come to expect and believe that if only more treatment had been given, mom would still be alive. If only narcotics had not been used, mom would still be alive. If only mom had been fed, had been given IV fluids she would still be alive. All these beliefs and thoughts are because most people are uneducated about the dying process. Other people die, I am not going to die and neither is anyone close to me is our thought. We are ostriches with our heads in the sand and then one day we are faced with dying, our own or someone close to us, and we are unprepared.
Yes, hospice kills reflects general ignorance but whose responsibility is it to teach the difference between real life and TV? I’d say it is us, the health care providers, the doctors, nurses and social workers, that are interacting with the patient during their disease process.
It would be ideal if all health care professionals understood the natural dying process. If all understood that death comes to everyone, that there is a time to treat and a time to stop. That there is a time to explain that death cannot be forestalled and here is what happens now. But that isn’t always the case.
When I first read Hospice kills my thought was hospice is not doing their job of educating well enough--and yes, I do feel that is an element here but I also believe as I said earlier that it is not just for us who work in end of life to teach but all medical professionals. If health care across the board recognizes that death is a part of living, that death will come and is not a failure but a normal natural progression, then ALL will teach that hospice helps people LIVE until they are dead. ALL will support the philosophy and recommend hospice care in a timely manner.
Misinformation about narcotics is huge in relation to “hospice kills". Our society today has a lot of fear round drug use, addiction, and overdosing. We see misuse of drugs daily on the news. Most people don’t understand regular, acute pain management and narcotic use, let alone end of life pain management and narcotic use. It is another Blog post to explain end of life pain management BUT I can assure you Hospice personnel are experts in appropriate comfort care.
Another aspect to consider is that from a practical, monetary stand point it makes no sense for a hospice agency to “kill” its patients. Hospice is reimbursed for every day that the patient is alive. The most money spent on a patient is in the first few days and the last few days. It is the space in between where extra monies balance out. Hospices want their patients to live months. That is how the bills are paid.
The word “kill” as defined by the Cambridge English Dictionary is “to cause someone or something to die.” dictionary.cambridge.org/us/dictionary/.../... Cambridge Advanced Learner's Dictionary kill definition, meaning, what is kill: to cause someone or something to die...
Hospice does not cause death. Disease causes death. Hospice does allow death to occur in its normal, natural time frame in the most humane, non suffering manner possible. Hospice does not hasten death but unlike its counterpart (dying in an acute care setting), it doesn’t try to prolong approaching death either.
Something More about Some Think Hospice Kills...
The Final Act of Living, clarifies what hospice does, and doesn't do. I share stories of how I came to be a hospice nurse, what it was like to be a hospice nurse in the early days, and some my profound experiences with certain patients. It paints the picture of all you can expect from hospice.
I’m sure there are many people who have had wonderful experiences with Hospice, but there are also many of us who have been forever changed, for the worse, because of them. I’m one of those people.
Both of my parents had dementia and ended up on Hospice as a way to help them stay in their home, which they desperately wanted. Hospice listed them as patients with six months or less to live, but assured us they did not feel they would die within that time frame, it was just what they had to do in order to get Medicare to cover the costs. In fact, both of my parents were incredibly healthy for their ages.
Despite Hospice in home care, they ended up in an adult care home that had a hospice wing. They were moved up the list, so to speak, because they were already on Hospice. The home had a long waiting list and entering the hospice wing meant they could move in quickly. This was a huge mistake!
My parents did not go to this home to die, but rather, to live a safer life.
Within no time at all, they were both being “controlled” with Seroquel, prescribed by Hospice. Seroquel is a antipsychotic drug. My parents were not psychotic, they had dementia. They were simply too active for this home. The other residents were all very docile, sitting in wheelchairs with their mouths open, unable to communicate or feed themselves. At first I thought these poor souls had all had strokes or some other debilitating illness that left them in this state. It didn’t take long to realize they, too, were being controlled with Seroquel or some other drug. Docile patients make the caregivers job so much easier! My Dad turned into one of those zombies, and it broke my heart.
One of the most dangerous side effects of Seroquel use for the elderly is strokes. I voiced my fears, but was ignored. Four months after moving to this home, Dad suffered a stroke. At the Hospice Nurses recommendation, my sisters chose to take a “wait and see” attitude, and my Dad was not sent to the hospital, nor was a doctor called in. He passed away 10 days later.
I was there on that last day, and saw employees from the home shooting a blue liquid substance into his mouth. He was dying, thinner than I’d ever seen him, unable to speak, walk, communicate, acknowledge I was there or anything else. They told me the medicine was to help with his pain.
At the time, I did not know about Hospice reputation for euthanizing patients. It was only later that I started putting two and two together, and I now feel Hospice hastened my Dad’s death by not giving him the medical help he needed, and by dousing him with liquid Morphine (the blue liquid). I will never know for sure.
The day after my dad died, my mother fell three times. The Seroquel did not create the zombie, docile person they had hoped for, but instead, made her very agitated and angry. Hospice kept upping her dose until she was being given enough to kill a large man, as per my nurse daughter in law. When she realized how much they were giving my mom, she questioned the head of the Hospice wing, who agreed it was a very high dose, but said their hands were tied, as they were following Hospice orders.
When I questioned both the home and Hospice about this, I was told it’s better to have her “silly” than angry. By silly, they meant hallucinating, blurred vision and loosing her balance, which was causing her falls. Better for who?
The home and Hospice decided Mom most likely broke her hip with her last fall, even though mom was able to stand afterwards, but saying her hip hurt. I approved a mobile xray to be ordered so we could know for sure, but the Hospice nurse convinced my sisters that an xray would be too painful for Mom, and it was cancelled. My mom was then put on the liquid morphine protocol, saying it was to prevent her from hurting her hip any further.
It didn’t take long before it started to sink in what they were doing. She was being kept in a morphine induced coma, with no food or fluids being given to her. They were euthanizing my mother. I tried to get my sisters to understand this but somehow, the Hospice Nurse had convinced them this was the kind and moral thing to do.
An xray was ordered several times, and several times it was cancelled.. An xray was finally done after a family battle, but too late for my mother. She passed away 2 days later from starvation and dehydration, 10 days after her ordeal began.
Two days later, I finally received the results of the xray. My mother had not broken her hip. It was simply bruised from falling.. My mother was euthanized for having a “maybe” broken hip. I think it’s more likely that my mother was euthanized for having dementia. We all need to consider what that might mean for any of us! How is that even legal in this country?
On top of loosing both my parents within a 10 day period, I have lost all relationship with my sisters, who I no longer trust. Some hospice may be a God send for some families, but for others, they have the power to destroy relationships.
My husband and I have promised each other that we will never allow Hospice in each others lives, and our children know our wishes. I’m sure there are very kind and caring hospice employees out there, but how would you know until, God forbid, it’s too late?
This is something I now have to live with, and the last few years have been very difficult. There is, of course, a lot more to this story, but for me, I wish I had fought my sisters harder. I wish I could have stopped this from happening. My parents deserved a much kinder ending. I do not think either one of my parents would have chosen death by starvation and dehydration.
It’s one thing for someone in pain to want Hospice to help them end their suffering, but for someone to have no say, and to have their death hastened by a Nurse who decides she knows best is quite something else.
I know many will not believe this kind of thing actually happens. I probably would not have believed it before I lived it. But it is happening, more than people realize.
Susan, I am so sorry you had such a horrific experience with hospice as your mother was dying. I hope you spoke with the director of the hospice about what happened. Administration needs to know. My thoughts are with you. Barbara
I do believe that hospice care is responsible for the death of my mother they gave her morphine every hour or less she only weighed 72 pounds how much did they think she could take they have no right to play god and I will never forget that they killed my mother she was unconscious and they still gave her more I asked the nurse to please stop and she replied that she had to I told my family never put me in the hospice they have a license to kill
Dear Cindy, I am so sorry to hear how your father died. The experience was truly horrific. The challenge now is to figure out how to live forward and put the images out of your mind. You don’t want the memory of your father’s death to take the place of the good memories of his life. Have you contacted the hospice director and told her your story. The hospice administration needs to know what has happened in its ranks. You talking gives them the opportunity to see that other’s are not treated as poorly. What happened to your father cannot be undone but make it not in vain by reporting the situation. You might write your father a letter. Put your thoughts, anger, frustration, sorrow on paper. Tell him what you are carrying in your heart, how badly you feel at the way he died. No one needs to see it. When finished burn the letter and scatter the ashes into the air, releasing the feelings that you are carrying.
Cindy, my thoughts and blessings are with you. It is challenging to be at the bedside as a loved one is dying when all is going as it should. It is overpowering when unnecessary suffering occurs Again, I am so sorry. Barbara
As an RN, I can tell you that my father’s experience was less than humane. He was transferred to the hospice center on a Sunday; he walked into the center. Yes, he was terminal and yes he definitely was dying. Upon admission, he told the nurse that he had pain on urination but they ignored it despite the fact that he had been complaining to his nurse for a week prior. I never left his side during the last 8 days of his life. The nurses continually refused to treat his UTI and he suffered horribly. By day 4 he was in so much pain he was moaning and couldnt sleep. By day 5 his kidneys were shutting down and it was his worst night. We finally succumbed to the morphine pump . I was severely sleep deprived and the hospice nurse told me to “press the button on the pump every 10 minutes”. Please note that my father was comfortable before they gave me the handheld device to give him a bolts. Every 10 minutes? She was rushing his death. I finally realized what was happening and stopped pressing the button after several hours. The nurse was having me snow my own father. The guilt I feel will never lea e me. To make matters worse my father’s defibrillator was reportedly disabled. That Friday he was repeatedly shocked for 30+ minutes until the nurse and I figured it out. She placed a magnet over the pacer and it finally stopped. My father did not die with dignity. I must say that many people have a very positive experience wit hospice but ours was not.
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