I get emails weekly from upset caregivers and family members who had hospice services. Now that mom is dead they are angry with hospice. It is the hospice's fault that mom died. "Hospice killed my mom."
My first response is that hospice did not educate enough, interact with caregivers enough, teach enough — and that is partially true. Time spent with families talking and teaching brings a better understanding of what is happening and what will happen.
Education is 90% of what we do when working with end of life situations. When we explain before death approaches and, if you can be present, even as death is occurring, then lack of understanding will not turn into fear and anger because death occurred.
Another area to consider: I’m not going to say hospice did or did not kill mom. I don’t know the details of mom’s dying. BUT I am going to say mom was on hospice service because she was dying. Hospice takes care of people who are dying. If it is an appropriate referral, mom will die while on service.
That is what hospice does — takes care of the dying until death comes. What’s not to understand here? Mom will die while getting hospice care.
I wonder if it isn't in part how mom looked when she was dying that creates the accusations. People don’t die like they do in the movies. Mom is not going to say some profound words, close her eyes and be dead. Dying is not pretty. It is messy. It is scary. It often looks torturous and unnatural.
The thing is, it is natural. That is how people die. Sometimes when death comes, it is gentle and appears peaceful. But most of the time it is laborious, long and certainly not pretty. There is generally a "struggle" to get out of our body. Hospice often provides medications (sometimes morphine) to relax and ease the labor, the struggle. Mom relaxes and dies. Then “Hospice killed my mom.”
Something more… about Dying Is Not Pretty
When we understand the normal dying process and what it will look like, our experience with our dying loved one becomes less fearful. Hospice agencies and end of life doulas have shared with me how valuable it has been for them to show NEW RULES for End of Life Care to families struggling with the process of dying.
Here are some reviews of the film:
3 comments
Vibeke
Thank you for Maria’s comment and Barbara’s article. I have been a Hospice volunteer in Florida and in the Toronto area. I was with my Mom when she died in the hospital a couple of days before she was to have a stent put into her heart. Everyone, including the nurses told me to go home and get some sleep. I stayed trying to sleep in an uncomfortable chair. At 5am she woke and said “I don’t want to go through all this, please God take me.” I was so glad I had stayed to hear her wishes. She crossed at about 11am at 97 years old. I had time to gather everyone and arrange to have her body taken back to her apartment in the senior’s residence where we prepared her body for a 3 day vigil. It was a wonderful three days for us all to have her there and to have people visit in her home. I also have to tell you that last summer our dog of 14 years who had heart issues died at home and I used the same words you used in your article Barbara. It was hard to watch her struggling to leave her body. It is the one thing we all share, humans and all creatures….dying. Blessing on our journeys!
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BK Books replied:
Vibeke, Thank you for sharing. It certainly makes a difference when we can get beyond our fear and create lasting, positive memories. Blessings! Barbara
Thank you for Maria’s comment and Barbara’s article. I have been a Hospice volunteer in Florida and in the Toronto area. I was with my Mom when she died in the hospital a couple of days before she was to have a stent put into her heart. Everyone, including the nurses told me to go home and get some sleep. I stayed trying to sleep in an uncomfortable chair. At 5am she woke and said “I don’t want to go through all this, please God take me.” I was so glad I had stayed to hear her wishes. She crossed at about 11am at 97 years old. I had time to gather everyone and arrange to have her body taken back to her apartment in the senior’s residence where we prepared her body for a 3 day vigil. It was a wonderful three days for us all to have her there and to have people visit in her home. I also have to tell you that last summer our dog of 14 years who had heart issues died at home and I used the same words you used in your article Barbara. It was hard to watch her struggling to leave her body. It is the one thing we all share, humans and all creatures….dying. Blessing on our journeys!
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BK Books replied:
Vibeke, Thank you for sharing. It certainly makes a difference when we can get beyond our fear and create lasting, positive memories. Blessings! Barbara
Mark Thomas
Dear Barbara,
If I may THANK YOU and those of your ilk for all you write-preach & share for folks contending with End-of-Life matters be it for / in person or family members – KNOWLEDGE is KEY here.
If I may – the more we all understand BEFORE hand and if there is NO turning back for the person faceing the end of term – then surely education re options like MAID- and or whats ahead truly helps.
Not knowing or understanding is a great cause of stress and pain for those left behind – blaming the Hospice and Nurse is most unfair – …
… again why I.M.H.O.- education & discussion of what will & can happen is most important and why talking about & PREPARING for Death – while difficult sometimes I certainly & personally understand & agree – it just makes it so much better and easier and can fill the end with good experience/s and memories – instead of shock-fear-upset-blamming etc.
Just my 2 cents worth if I may – with thanks.
Thanks for all you do to help so many folks Barbara.
Cheers,
Mark.
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BK Books replied:
Thank you, Mark. Well said! We think alike. Blessings! Barbara
Dear Barbara,
If I may THANK YOU and those of your ilk for all you write-preach & share for folks contending with End-of-Life matters be it for / in person or family members – KNOWLEDGE is KEY here.
If I may – the more we all understand BEFORE hand and if there is NO turning back for the person faceing the end of term – then surely education re options like MAID- and or whats ahead truly helps.
Not knowing or understanding is a great cause of stress and pain for those left behind – blaming the Hospice and Nurse is most unfair – …
… again why I.M.H.O.- education & discussion of what will & can happen is most important and why talking about & PREPARING for Death – while difficult sometimes I certainly & personally understand & agree – it just makes it so much better and easier and can fill the end with good experience/s and memories – instead of shock-fear-upset-blamming etc.
Just my 2 cents worth if I may – with thanks.
Thanks for all you do to help so many folks Barbara.
Cheers,
Mark.
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BK Books replied:
Thank you, Mark. Well said! We think alike. Blessings! Barbara
Maria D'Marco
My experience when caring for my dying mother, after having some hospice training and sharing this ending with a wonderful hospice worker, was all that you’ve said. I knew she would have a struggle, that she might be afraid to leave, that she might be facing an unknown of the same quality as we view death while here in the physical. I reassured her that everyone was waiting for her, that I would tend to her after she left, etc. After she passed on, my family members left the house (it was late night) and I stayed. My brothers were terrified to stay. I felt my mom as still being there and was concerned she might not go ahead with her ‘decontamination’ :O))) if I left. I felt her come upstairs to where I lay and I told her to come in and lay down with me, to not be afraid, and to pardon me for keeping my eyes closed. hahaha I fell asleep immediately after feeling her next to me — in the morning she was gone and the house was fresh and cheerful.
Please keep telling people about dying! You were the reason I was able to prepare for losing her and I’ve blessed you ever since… this loss was over 20 years ago.
Thank you, dear Barbara.
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BK Books replied:
Oh, Maria, thank you so much for sharing your comforting story. If we know what to expect, we can conquer our fear and touch into the beauty of the moment. Blessings! Barbara
My experience when caring for my dying mother, after having some hospice training and sharing this ending with a wonderful hospice worker, was all that you’ve said. I knew she would have a struggle, that she might be afraid to leave, that she might be facing an unknown of the same quality as we view death while here in the physical. I reassured her that everyone was waiting for her, that I would tend to her after she left, etc. After she passed on, my family members left the house (it was late night) and I stayed. My brothers were terrified to stay. I felt my mom as still being there and was concerned she might not go ahead with her ‘decontamination’ :O))) if I left. I felt her come upstairs to where I lay and I told her to come in and lay down with me, to not be afraid, and to pardon me for keeping my eyes closed. hahaha I fell asleep immediately after feeling her next to me — in the morning she was gone and the house was fresh and cheerful.
Please keep telling people about dying! You were the reason I was able to prepare for losing her and I’ve blessed you ever since… this loss was over 20 years ago.
Thank you, dear Barbara.
———
BK Books replied:
Oh, Maria, thank you so much for sharing your comforting story. If we know what to expect, we can conquer our fear and touch into the beauty of the moment. Blessings! Barbara