Date
October 30 2017
Written By
Barbara Karnes
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Some Think Hospice Kills

Some Think Hospice Kills


Comments

Nita - April 18 2019

Hospice definitely kills and it makes me so angry that hardly anybody wants to acknowledge this. They doped both my mother and grandmother up on so many pain meds that they both fell into a coma. Couldn’t eat or drink. I didn’t know any better with my mom. They convinced me it was the cancer that was killing her but no. She was alert and eating one day and the day after they put her on all those drugs she was out of it. She fought so hard. In the nursing home they went behind my back and put my grandma on the fenty patch when she told them many times she was not in pain. She went from being alert, talking, and laughing to nodding out in her meals within 48hrs. She was dead within a week. Even the nurses confirmed that they didn’t understand why the doctors switched her meds when she clearly wasn’t in pain. These people and those who condone what they do are pure evil.

Barbara - April 02 2019

Monique, I am so sorry you had such a horrific experience. I hope you have reported your concerns to Medicare
https://www.medicare.gov/claims-appeals/how-to-file-a-complaint-grievance and to your state survey agency for nursing homes. (State Survey Agencies are usually part of your States department of health services.)
My blessings are with you and your family . Barbara

Monique - April 02 2019

Hospice starved my dad to death gave him morphin every hour when he clearly didn’t need it , all bc he has Alzheimer’s broke his hip how he broke it is still unknown to us when he clearly couldn’t walk for over a yr and a half before how did he fall ? They wanted to get rid of him ! I live with this guilt everyday that I didn’t stop them I did t know what we could do , my mom never wanted morphin to be given to him but they forced us bc one morning he didn’t eat and hospice and the nursing home said he was dying , No my Dad still had life in him they killed him , I’m sorry but that’s how I feel , they wouldn’t try feeding him nor give him fluids, I will never get these images Out of my head !

Judy Patak - March 17 2019

I’m so glad this is written and posted. People need to see what really happens with Hospice care.

Barbara - March 05 2019

Dear Karen, what a horrific experience for your parents, you and your entire family. I suggest, if you haven’t already, file a complaint with Medicare. 1-800-633-4227 or Medicare.gov/claims-appeals/fileacomplaint. From your experience this is abuse on so many levels. You also should talk at length with the hospice administration and the residential facility administration. Your experience needs to be recorded. Your parents cannot be helped now but your action can protect others in the future. As you said, not all hospices are bad but from your experience this particular one does not represent the original hospice philosophy in intent or practice. You are in a position to make a difference. By your speaking out your parents experience will not have been in vain.
My blessings to you. Barbara

Karen Challender - March 05 2019

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.

Barbara - February 06 2019

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

susan dooley - February 06 2019

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

Barbara - September 04 2018

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

Cindy Powell - September 04 2018

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.

Barbara - June 13 2018

Dear Rebekah, I am so sorry to hear of your difficult experience with hospice as your loved one was dying. Living through the dying experience is challenging and emotionally draining without having those who are supposed to provide care and comfort not doing their job. If you have the energy (and you may not) following up with administrators of the company and even writing a complaint to Medicare could affect how others are treated in the future. It may also bring a tiny bit of peace in your grieving. My blessings are with you. Barbara

Rebekah Glass - June 13 2018

My loved one was on hospice. His nurse and the social worker were great but the administration of the company was horrible. This was my first experience with hospice and it was a nightmare. He had a picc line and was unable to swallow pills most days. I was his advocate and I called to see about getting a morphine pump. They let him go 13 days with almost no pain medication. It took me as well as a friend and a previous nurse of his calling the company to get the pump sent out. Then about a month after that, he was having uncontrolled nausea and was vomiting the oral medications. He had a stoma and a suppository wasn’t really an option for several reasons. The nurse originally told me that they could put anti-nausea medication through his picc line but the company refused. i complained several times to the hospital that owned the company as well as made a complain to the state. My loved one told me that this experience was hell. In the end they completely refused anything for nausea, although he wanted to eat, and he went 20 days before he passed.

Patti Urban - December 11 2017

I hold workshops to get advance directives done. Also, when I’m working with families on advance care planning, I have them interview 3 hospice agencies. It’s part of educating them that hospice doesn’t kill, the disease does. Thanks for a good article.

kenneth d marlatt - November 02 2017

I don’t think we could have done this without hospice. although my wife was under their care for over 5 months and my wife slowly lost her grip on life. she had bone cancer and was in extreme pain, although she never complained. hospice was always there for her, giving her loving care. during her struggle with life, she had to have large doses of morphine to control the pain. the nurse said at that stage you were really not overdosing her with drugs as her pain was beyond help and that her body functions were shutting down. I truly believe hospice were like angels sent from heaven preparing my wife for her final journey. my wife was allowed to die at home surrounded by her family. this was only made possible by hospice.

Michael Duffy - November 02 2017

Hi Barbara,
Thanks for the blog post on Hospice Kills. I believe as you stated the reasons for this very common misconception are multifaceted. I feel one of the primary reasons is the ignorance of the medical community specifically the community physicians. We have physicians in the community that believe “Hospice Kills”.
Education is needed across the board and my service is not interested in taking the lead. I have been advocating for outreach education on the full-time basis with our community physicians. No one wants to spend the money. It is so frustrating. Thanks for listening.
Mike

Cathy - November 02 2017

Carole- were you aware of the goals and outcomes of Hospice care for end of life situations? Allowing your loved one to pass on without pain or discomfot, and WITH comfot and dignity are two important premises. Fearfulness, anxiety, agitation & restlessness are all characteristics of end of life behaviors. Was that how you invisioned your loved one passing and moving on? Death is a process which moves through stages. Could it be possible that the Ativan was the means to peacefulness at the end of life for your Mom as opposed to ending her life?

Barbara Karnes - November 02 2017

Hi Donna, thank you for your comments on our blog. You mentioned two people who were admitted to Hospice and died shortly after morphine was given for pain management. I do not have enough medical information to comment on the two individual situations. I will make some general statements.
Hospice is thought of as taking care of people who are dying. Because of that they get referrals of patients when they are actively dying. Families of those patients are generally not aware of how close their loved one is to actually dying. The person dies within days and it is thought to be hospice’s fault.
People are very aware of the opiod problem this country is facing. What most people don’t know is how narcotics are used in end of life care. People think about overdosing because that is where our mind is in relationship to society challenges. It is actually very hard to overdose a person who has a lot of pain. It is the healthy body with no pain that generally dies of an overdose.
When a person is days to hours from death the body is not processing medications normally. Their circulation is slowed which affects the ability of a narcotic to get through the system. The narcotic is not doing its job let alone being enough to kill someone.
It is our lack of understanding, our lack of adequate education in end of life comfort management that leads to families believing morphine killed their loved one.
If hospice is at fault I think it is because there has been a lack of family education.
Blessings! Barbara

Frank Seidel - November 02 2017

Barbara: Thank you for your comments. It is something that will have to be repeated many times more because many people have trouble accepting that death is certain we just don’t know when and how. In my law practice of estate planning so many times my client would say, “if I die” and I would have to gently correct saying, “it’s not if, it’s when”. That correction was necessary to guide their thinking to practical planning as opposed to being unrealistic while under the delusion that death was mere speculation.

Donna - November 01 2017

Hi Barbara,

I would really be interested in reading a blog post you would write on pain management while in hospice. I recently had two male friends in hospice with pain. One a Parkinson’s patient who got a brain bleed from a fall and one from liver cancer, spreading throughout his body. The first died within a week of hospice placement and the second the next day after hospice treatment. Both were given Morphine for their pain. The subject of eventual overdose and amount of dosage was discussed by the women grieving…..

Thank you,

Donna

Sandra G Prater - November 01 2017

I’ve read your blogs since my husband passed away in June, 2017, and appreciate your explaining the dying process and Hospice’s part in comforting the patient as they go through the process. My Dad was cared for by Hospice 5 years ago and I witnessed the role that Hospice played in his final weeks and days. As the weeks went by and Hospice explained his condition, we realized his death was eminent and prepared ourselves for the finality of his life. Then as we watched him gradually and calmly succumb, we knew he was not in pain and it comforted our anxiety. My husband was also cared for by Hospice this year and although there were many feelings to endure in his last months, I felt confident Hospice would help my family through the process. I realized that letting him face his death painlessly after a long period of declining health and pitiful symptoms was the Humane approach to take rather than extending his certain end with unnatural means. Just as you say, Hospice certainly doesn’t kill people but rather allows them to peacefully and comfortably meet a timely and certain appointment.

Barbara Karnes - November 01 2017

Hi Carole, I am sorry to hear you did not have the opportunity to talk with your mother before she died. There are always so many things we wish we would have said after an opportunity is gone. May I suggest that you write her a letter. Write is now even though she is gone. Put in the letter all the things you wanted to say but did not get the chance. After you have written the letter, burn it and toss the ashes to the wind. See your message flying to her. Know some part of her will know the contents of your heart.
Blessings! Barbara

Barbara Karnes - November 01 2017

Hi Pam, thank you for your comment on my blog. I just want to reassure you that giving a doctor prescribed narcotic dosage does not hasten death. It reduces physical pain and can ease labored breathing. There are so many misconceptions about narcotics, and administering an overdose is one of them.
You might want to scroll through some of my other blog posts where I talk about morphine and its use at end of life. One thing to know is if you give a dose of morphine or pain medicine and a few minutes later the person dies it was not the drug. If death is that close the circulation is almost non existent and the drug has not had time to get into the system let alone do anything.
Blessings! Barbara

Barbara Karnes - November 01 2017

Hi Marilyn, I would love for you to use and share my blog posts—any of them, that is why I write them. I appreciate you giving me credit. Certainly put them on your sites.
Thanks for asking. Barbara

Barbara Karnes - November 01 2017

Good Morning William, I read your response to my blog post on “Hospice Kills”. I disagree with your comment that there are “campaigns" promoting dying as “horrific—with under managed symptoms and financial ruin” in order to advocate for physician assisted dying. In fact fewer people than expected have selected the very comprehensive, extensive process of being accepted into the program. Also the drugs are very expensive making actually getting them difficult. I am aware of numbers of hospices that have worked with people who have gotten the approval. The patient and their families need not be alone. Our work is not to judge people in their end of life decisions but to offer support, guidance and comfort.
Blessings! Barbara

Constance Malaambo, RN (retired ED) - November 01 2017

I teach a five hour class on completing “your” Advance Directive in CA. at CSULB. I reference the The Final Act of Living throughout the class; spending time on hospice. It definitely is misunderstood. And thanks to sister (retired RN hospice), I keep a variety of pamphlets on hand.

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