I often do some of my best thinking during those hours at night when I am awake. Recently, as I tried to go back to sleep at 3:30 AM, I started thinking about comfort care and morphine use during the end of life process.
Picture this: there is breathing distress while the hospice nurse is present. She advises a “bit of morphine.” Many times I have done that very thing.
Often, the family's first reaction is "No, I don't want to start morphine." To them morphine is the “last resort." It is scary and they don’t want to be at the stage where morphine administration implies—-the end is close.
Back to my 3:30 AM thoughts: Comfort to us caregivers means our person is sitting up in bed, talking, smiling, interacting with us. Where in reality, as end of life approaches, comfort means our special person is sleeping, not agitated, their mouth is open, they look awful but are relaxed and comfortable.
This difference in expectations is why families think “Hospice killed my mom. She was fine (interacting but in pain or distress) before they gave her morphine. Then she was sleeping and died.”
The gentle way to die is to relax AND morphine and Ativan do just that. Comfort is relaxing enough to let go.
Our role models from movies and TV show us that dying is gentle, often poetic, certainly not scary or messy. Movies make dying look comfortable.
Real comfort as death is approaching for most of us (not all but most) is a bit of Ativan to relax the restlessness and a bit of morphine to ease the increased breathing challenges —-and pain if it is present.
Another whole blog is needed about how dying is not painful, that disease causes pain. But for this one my thought is there is a difference between a family’s interpretation of comfort and hospice’s.
Something more… about Movies make dying look comfortable. What do you do when it’s not?
The opioid epidemic has us, understandably, afraid of narcotics. We seem to read about the dangers daily. Giving our special person a drug that we hear so much negativity about is frightening. That is why hospice agencies use my booklet, Pain At End of Life to educate their patients' families. Remember, knowledge reduces fear. The way a dying body processes medication is completely different than it would be in a healthy body. Support your families with this education so that the dying experience can be less fearful and more connected.
10 comments
Melanie
Dear Barbara, your blogs and books have been a true lighthouse for me during the most challenging years of my life. I was the primary caregiver for my brother until he passed at 61 from cancer, and I am now the main caregiver for my 88-year-old mother with dementia.
Currently, your wisdom is helping me support my husband as his father reaches the end of life in Brazil. In a culture where hospice is not yet widely accepted and most die in the hospital, your words give us the clarity and courage to navigate a very difficult family dynamic.
Your insights provide me with the language of grief and the tools to help others in my mother’s facility who are also struggling. Thank you for being a steady, profound source of support and for giving me the words to guide those I love through the ‘scary’ parts of death with grace.
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BK Books replied:
Oh Melanie, what a challenging time for you. I am glad my materials are giving you guidance. Blessings to you and all you are guiding through their final life experience. Barbara
Dear Barbara, your blogs and books have been a true lighthouse for me during the most challenging years of my life. I was the primary caregiver for my brother until he passed at 61 from cancer, and I am now the main caregiver for my 88-year-old mother with dementia.
Currently, your wisdom is helping me support my husband as his father reaches the end of life in Brazil. In a culture where hospice is not yet widely accepted and most die in the hospital, your words give us the clarity and courage to navigate a very difficult family dynamic.
Your insights provide me with the language of grief and the tools to help others in my mother’s facility who are also struggling. Thank you for being a steady, profound source of support and for giving me the words to guide those I love through the ‘scary’ parts of death with grace.
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BK Books replied:
Oh Melanie, what a challenging time for you. I am glad my materials are giving you guidance. Blessings to you and all you are guiding through their final life experience. Barbara
Claudia Swisher
My husband died in hospice almost 2 years ago. I was giving him morphine as directed, and my nurse told me I could administer it more often. My sweet man passed peacefully soon after my last dosage. I was so worried I had hastened his death. But you posted something earlier about just this fear. I wept in relief. It’s like you read my mind. Don’t think I thanked you then. I am now. Thank you!
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BK Books replied:
Hi Claudia, morphine and approaching end of life have so much fear and lack of knowledge around them. I am glad I could give you a bit of insight into this challenging, scary time. Blessings! to you! Barbara
My husband died in hospice almost 2 years ago. I was giving him morphine as directed, and my nurse told me I could administer it more often. My sweet man passed peacefully soon after my last dosage. I was so worried I had hastened his death. But you posted something earlier about just this fear. I wept in relief. It’s like you read my mind. Don’t think I thanked you then. I am now. Thank you!
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BK Books replied:
Hi Claudia, morphine and approaching end of life have so much fear and lack of knowledge around them. I am glad I could give you a bit of insight into this challenging, scary time. Blessings! to you! Barbara
Karen
This is so true. I have had numerous people tell me that their loved ones, who were previously on this hospice journey, shared the same sentiment! It had always been curious to me that, first, they felt telling me that, when they knew my spouse was in hospice, was in some way helpful, and second, they thought this was true. On another note, I have lots of 3:30 AM thoughts too!.
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BK Books replied:
Hi Karen, some of us do our best thinking at 3AM. Thank you for sharing. I think people are uncomfortable and don’t know what to say to a caregiver (or the ill person themselves) so they share their own story. That story often doesn’t help us listeners but the intention is well meaning. Blessings! Barbara
This is so true. I have had numerous people tell me that their loved ones, who were previously on this hospice journey, shared the same sentiment! It had always been curious to me that, first, they felt telling me that, when they knew my spouse was in hospice, was in some way helpful, and second, they thought this was true. On another note, I have lots of 3:30 AM thoughts too!.
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BK Books replied:
Hi Karen, some of us do our best thinking at 3AM. Thank you for sharing. I think people are uncomfortable and don’t know what to say to a caregiver (or the ill person themselves) so they share their own story. That story often doesn’t help us listeners but the intention is well meaning. Blessings! Barbara
Rev. Steve Reddy
Thank you so much for all the good work you do. We use your pamphlets all the time. Morphine can be a “bad” word for some people. A little bit of education goes a long way!!
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BK Books replied:
Hi Steve, you are right, knowledge reduces fear. The challenge is getting that knowledge to people soon enough—when they need it the most. Blessings to you in the work you are doing. Barbara
Thank you so much for all the good work you do. We use your pamphlets all the time. Morphine can be a “bad” word for some people. A little bit of education goes a long way!!
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BK Books replied:
Hi Steve, you are right, knowledge reduces fear. The challenge is getting that knowledge to people soon enough—when they need it the most. Blessings to you in the work you are doing. Barbara
Susan
Just my two cents are sitting with more people passing than I ever thought I would. I would want to be cognizant and of clearish mind when I meet my Lord unless the physical damage was so great that it would be inhumane. My mom was cognizant until the morphine and neer spoke another word. My dad, without morphine, spoke to those he saw in his room and was awe struck. I can say for myself I would prefer awe to being passed out if possible and realistic. That is just me though and my family is well aware of my wishes
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BK Books replied:
Hi Susan, you are right we all have our own choices to make. Be sure your family knows how much medications you want or don’t want should you be unable to speak for yourself. Blessings! Barbara
Just my two cents are sitting with more people passing than I ever thought I would. I would want to be cognizant and of clearish mind when I meet my Lord unless the physical damage was so great that it would be inhumane. My mom was cognizant until the morphine and neer spoke another word. My dad, without morphine, spoke to those he saw in his room and was awe struck. I can say for myself I would prefer awe to being passed out if possible and realistic. That is just me though and my family is well aware of my wishes
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BK Books replied:
Hi Susan, you are right we all have our own choices to make. Be sure your family knows how much medications you want or don’t want should you be unable to speak for yourself. Blessings! Barbara
Joan
Perhaps we end of life practitioners need to be more specific in our teaching about what the end might look like so we can help guide the families’ expectations. A person who has never witnessed a death before will have no idea what will happen and with no frame of reference, why wouldn’t they expect it to look like the movies?
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BK Books replied:
Hi Joan, I absolutely agree. Thank you for sharing. Blessing! Barbara
Perhaps we end of life practitioners need to be more specific in our teaching about what the end might look like so we can help guide the families’ expectations. A person who has never witnessed a death before will have no idea what will happen and with no frame of reference, why wouldn’t they expect it to look like the movies?
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BK Books replied:
Hi Joan, I absolutely agree. Thank you for sharing. Blessing! Barbara
Joe Dunham
This was very helpful, Barbara. Apparently, this is a common fear amongst us who have a very limited experience in this. Your booklet “Gone From our Sight” and this above reading was very calming for our family, who experienced these fears almost to a T. The Hospice team are like angels.
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BK Books replied:
Hi Joe, thank you for sharing. Blessings to you and your family. Barbara
This was very helpful, Barbara. Apparently, this is a common fear amongst us who have a very limited experience in this. Your booklet “Gone From our Sight” and this above reading was very calming for our family, who experienced these fears almost to a T. The Hospice team are like angels.
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BK Books replied:
Hi Joe, thank you for sharing. Blessings to you and your family. Barbara
Karen Hover
This helped me, Barbara. It’s as if you were talking about my husband and me.
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BK Books replied:
You are welcome, Karen. Blessings! Barbara
This helped me, Barbara. It’s as if you were talking about my husband and me.
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BK Books replied:
You are welcome, Karen. Blessings! Barbara
Rahab
I agree, everything about dying is based on imagination, fear and ignorance ( almost). Yes, in “make believe land” there is some one near the bedside, weeping, silently holding the hand of the person close to death. But really, unless almost prodded by someone else most want to stay clear hoping to be gently informed when the end came, " Well, she’s gone now".
Time is a luxury, a gift, but a horrible commodity in the possession of one who squander s time anyway. Hospice helps dole out the time, giving a measure to everyone. I’d say the best part of any day is having the good fortune to have a hospice agency in place early. Watching the passing of life, with grace and appreciation of the medications used to support that departure is transformative. Thanks for your advice and education!
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BK Books replied:
Thank you Rahab. Blessings! Barbara
I agree, everything about dying is based on imagination, fear and ignorance ( almost). Yes, in “make believe land” there is some one near the bedside, weeping, silently holding the hand of the person close to death. But really, unless almost prodded by someone else most want to stay clear hoping to be gently informed when the end came, " Well, she’s gone now".
Time is a luxury, a gift, but a horrible commodity in the possession of one who squander s time anyway. Hospice helps dole out the time, giving a measure to everyone. I’d say the best part of any day is having the good fortune to have a hospice agency in place early. Watching the passing of life, with grace and appreciation of the medications used to support that departure is transformative. Thanks for your advice and education!
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BK Books replied:
Thank you Rahab. Blessings! Barbara
Elinor Bayse
My husband was in a terrible auto accident when he was in his thirties. He lost all signs of life twice, and, after he was brought back by CPR, told me that actually dying was very painful. He did not mean all the pounding on his chest that brought him back. He lived 48 years after that, and I hope his final passing was not as painful. All this to say that perhaps morphine might help with that pain as well.
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BK Books replied:
Hi Elinor, thank you for sharing. Blessings! Barbara
My husband was in a terrible auto accident when he was in his thirties. He lost all signs of life twice, and, after he was brought back by CPR, told me that actually dying was very painful. He did not mean all the pounding on his chest that brought him back. He lived 48 years after that, and I hope his final passing was not as painful. All this to say that perhaps morphine might help with that pain as well.
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BK Books replied:
Hi Elinor, thank you for sharing. Blessings! Barbara