Dear Barbara, My mother was transferred to an inpatient hospice. She was alert and talking to us when she arrived. Upon admission, the RN brought up the topic of medications to help her relax. I told her my mom had been relaxed without any problems. The RN insisted she seemed uncomfortable and pushed for morphine. Within 30 minutes of getting the morphine, mom started having difficulty breathing. It seemed like the morphine over-relaxed her. We didn’t even ask about pain medication; the RN brought it up and suggested it. I regret not having the courage to tell her no! Tell me, did the morphine exacerbate her condition?
It is difficult to respond to this question. I don't have this woman’s diagnosis or medical history, which I would need in order to evaluate whether or not the use of morphine was appropriate or not. But I can say that from all that this woman's daughter described, I too would ask why use morphine at this time? However, it is quite possible that the hospice nurse assessed pain and discomfort that the daughter did not see, and thought a narcotic could bring more comfort.
The daughter’s description does not suggest pain or even difficulty breathing. However I must take into consideration the difference between professional and non-professional assessments.
Education is so important. Knowledge reduces fear and misunderstanding of the care provided. The daughter’s concerns lead me to question the communication between her and the RN. Did the RN take the time to explain why she was going to give the narcotic? Did she explain the signs of approaching death that made her think a narcotic was appropriate? Did she offer guidance on what to do to support her mother?
90% of end of life care is education. People don’t die like they do in the movies, yet movies are our current role models. This leads to unrealistic expectations. If a professional does not teach us how dying unfolds, particularly when narcotic use is involved, I will often get a letter from a distraught caregiver who now mistrusts hospice care.
Something More… about Did Morphine Exacerbate Her Condition?
When a patient comes on hospice the family is often in shock. They can hardly absorb all that they are being told. If they have my booklet, Gone From My Sight and in the above situation, Pain At End of Life, they will have something to go back to after the initial meeting. They will write notes in the booklet. They will read it to loved ones who call to check in. They will refer to it in the wee hours when they are alone and symptoms change.
11 comments
Sally
My mom had contraindications to morphine, opioids in general and benzos. We told hospice that. They came in with their typical opiods and benzos. My mom needed a different med but my voice was totally dismissed. Hospice was also for no food or water. If course they had her so literally drugged food and water would have been unsafe. They also gave her benzos which make her psychotic. The last time I saw my mom she was psychotic.. acting manic. I am an LCSW, have been in private psychiatry practice and on staff at 3 hospitals. My mom needed migraine meds which we found out were compounded to emulsion/liquid and at pharmacy 2 miles away. I had asked hospice about this. They said they would check into it (didn’t). I found out 2 days prior to her death about the compounded meds.
Hospice tends to bring in big guns of opioids and benzos. Not for everyone but that didn’t seem to matter. They need education
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BK Books replied:
Hi Sally, I hope you talked with the Hospice Director about the inappropriate care given by their staff. It won’t change the care your mother received but may help others. And yes, end of life care, meds included, are different than care or meds for someone who is going to get better AND even some hospice staff doesn’t know the difference. Blessings to you in the work you are doing. Barbara
My mom had contraindications to morphine, opioids in general and benzos. We told hospice that. They came in with their typical opiods and benzos. My mom needed a different med but my voice was totally dismissed. Hospice was also for no food or water. If course they had her so literally drugged food and water would have been unsafe. They also gave her benzos which make her psychotic. The last time I saw my mom she was psychotic.. acting manic. I am an LCSW, have been in private psychiatry practice and on staff at 3 hospitals. My mom needed migraine meds which we found out were compounded to emulsion/liquid and at pharmacy 2 miles away. I had asked hospice about this. They said they would check into it (didn’t). I found out 2 days prior to her death about the compounded meds.
Hospice tends to bring in big guns of opioids and benzos. Not for everyone but that didn’t seem to matter. They need education
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BK Books replied:
Hi Sally, I hope you talked with the Hospice Director about the inappropriate care given by their staff. It won’t change the care your mother received but may help others. And yes, end of life care, meds included, are different than care or meds for someone who is going to get better AND even some hospice staff doesn’t know the difference. Blessings to you in the work you are doing. Barbara
Karen
Thank you for sharing this question and for educating all of us. I recently lost my mom at the age of 97 on 12/29/24. She passed at my home. Thankfully I heard you, Barbara on a podcast and started hospice 6 mos ago. I chose the same hospice we had for our father 25 years ago as we were pleased with their services. Not so this time for several reasons. My mom had breathing problems and was on oxygen 24/7 for the last few years of her life. When her breathing took a turn for the worse the weekend she passed, hospice immediately suggested morphine 0.25 under the tongue every 4 hours. The next day the morphine was increased by .25 and almost immediately with this increase my mom was out of it, no longer communicating and passing 2.5 hours later. We had never been educated by hospice on how quickly this could happen. While we realize what a blessing it is that she went so fast surrounded by us, there was no education from hospice on what to expect or look for as she entered this phase of life. While I know morphine did not cause her to die, I see how people think this, especially when it happened so fast in my mom’s case. I plan on sending an email to the Director to make her aware of the “lack of” much in many areas Thank you
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BK Books replied:
Hi Karen, thank yo ufor sharing your experience. I am glad you contacted the hospice to address the lack of education. End of life work is 90% education. When we know what to expect we can most times deal with it. It is the unknown that leads to misunderstandings. Blessing to you and your family. Barbara
Thank you for sharing this question and for educating all of us. I recently lost my mom at the age of 97 on 12/29/24. She passed at my home. Thankfully I heard you, Barbara on a podcast and started hospice 6 mos ago. I chose the same hospice we had for our father 25 years ago as we were pleased with their services. Not so this time for several reasons. My mom had breathing problems and was on oxygen 24/7 for the last few years of her life. When her breathing took a turn for the worse the weekend she passed, hospice immediately suggested morphine 0.25 under the tongue every 4 hours. The next day the morphine was increased by .25 and almost immediately with this increase my mom was out of it, no longer communicating and passing 2.5 hours later. We had never been educated by hospice on how quickly this could happen. While we realize what a blessing it is that she went so fast surrounded by us, there was no education from hospice on what to expect or look for as she entered this phase of life. While I know morphine did not cause her to die, I see how people think this, especially when it happened so fast in my mom’s case. I plan on sending an email to the Director to make her aware of the “lack of” much in many areas Thank you
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BK Books replied:
Hi Karen, thank yo ufor sharing your experience. I am glad you contacted the hospice to address the lack of education. End of life work is 90% education. When we know what to expect we can most times deal with it. It is the unknown that leads to misunderstandings. Blessing to you and your family. Barbara
Julie
This email sends me back. I too was a caregiver for a family member on hospice in a nursing facility. My family member never showed pain nor ask for any meds or help. When I saw her shriek every couple of minutes I asked for morphine and it didn’t help at all. When I continued to read her she seemed fidgety, anxious, restless. Turns out she had a terrible fear of dying which she confided in her roommate only. My hospice nurse suggested combining both the morphine with atavan and only then was she able to pass peacefully after several days. My nurse told me it would be more difficult for her to let go when she is in pain or scared. She was right! Sometimes we have to advocate, advocate, advocate for our loved one and then trust them in the Lord’s hands. I still read and love! all your content
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BK Books replied:
Julie, thank you for sharing your experience with a family member and how your hospice nurse helped her have a more peaceful death.. Blessings! Barbara
This email sends me back. I too was a caregiver for a family member on hospice in a nursing facility. My family member never showed pain nor ask for any meds or help. When I saw her shriek every couple of minutes I asked for morphine and it didn’t help at all. When I continued to read her she seemed fidgety, anxious, restless. Turns out she had a terrible fear of dying which she confided in her roommate only. My hospice nurse suggested combining both the morphine with atavan and only then was she able to pass peacefully after several days. My nurse told me it would be more difficult for her to let go when she is in pain or scared. She was right! Sometimes we have to advocate, advocate, advocate for our loved one and then trust them in the Lord’s hands. I still read and love! all your content
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BK Books replied:
Julie, thank you for sharing your experience with a family member and how your hospice nurse helped her have a more peaceful death.. Blessings! Barbara
Francesca D
Hi,
I am a LCSW and worked on an inpatient hospice unit a few years ago. My understanding of the main reason that patients would be admitted to an inpatient unit would mean the patient was imminent, meaning death was close. Other reasons patients were admitted could be already established patients that had hospice in the home, were facing difficulties such as unmanaged pain or other factors that were short term and difficult to manage in the home, and the patient was on the unit for 5 days or less and then discharged back home.
Any time a patient was admitted onto hospice, the inpatient team would receive a report on the patient prior to admission. Our team would meet with the doctor, prior to that patient’s arrival and establish a general plan. In this case, depending on where the patient was coming from to the inpatient unit, this RN could have received a report and was going by that but I agree that we each should complete an assessment first despite the report. On my unit, we always assured family received education on the medications given and why they were being given and if there was hesitation we wouldn’t administer until the family was on board and understood.
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BK Books replied:
Hi Francesca, thank you for sharing the protocol for your inpatient hospice. Blessings to you in the work you are doing. Barbara
Hi,
I am a LCSW and worked on an inpatient hospice unit a few years ago. My understanding of the main reason that patients would be admitted to an inpatient unit would mean the patient was imminent, meaning death was close. Other reasons patients were admitted could be already established patients that had hospice in the home, were facing difficulties such as unmanaged pain or other factors that were short term and difficult to manage in the home, and the patient was on the unit for 5 days or less and then discharged back home.
Any time a patient was admitted onto hospice, the inpatient team would receive a report on the patient prior to admission. Our team would meet with the doctor, prior to that patient’s arrival and establish a general plan. In this case, depending on where the patient was coming from to the inpatient unit, this RN could have received a report and was going by that but I agree that we each should complete an assessment first despite the report. On my unit, we always assured family received education on the medications given and why they were being given and if there was hesitation we wouldn’t administer until the family was on board and understood.
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BK Books replied:
Hi Francesca, thank you for sharing the protocol for your inpatient hospice. Blessings to you in the work you are doing. Barbara
Ben Zoodsma
I appreciate the hard decisions hospice providers have to make. I know first hand how difficult it is to watch a loved one die. Hospice is what it is, false hope often increases the suffering our loved ones must endure.
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BK Books replied:
Thank you Ben. Blessings! Barbara
I appreciate the hard decisions hospice providers have to make. I know first hand how difficult it is to watch a loved one die. Hospice is what it is, false hope often increases the suffering our loved ones must endure.
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BK Books replied:
Thank you Ben. Blessings! Barbara
Lisa Riener
Thank you for your books and your blog. It gives me comfort to read them. My Dad died in his bed at age 90, 10 years ago. He had medical issues for 10 years before he passed, but would not discuss them (he never spoke much anyway during the last 15 yrs of life), nor would he go seek medical advice. We had hospice, here in Fla., who hired people that did not seem to have much medical training or experience. But they were patient and kind with Dad, helping him bathe and dressing him, which we all appreciated very much. Their help allowed us to keep Dad at home until he passed. That is what was important, Dad got to pass in the house he built on the lake after WWII, the seemingly high light of his life (at 21 years of age as a bomber pilot over Germany). I learned so much from my Dad; patience, humor, joy (even though it was muted for Dad under his PTSD). And I learned how to die, with peace (I hope). Hospice gave us time to really connect. I was working full time during this period, and am so lucky that Dad died peacefully (I was not there but another family member was at his bed-side). I am really trying to think-through what my death means, how to navigate acute sickness (I had breast cancer 3 yrs ago), and how to really arrange my stuff as I get ready to pass (in ten years or more)? Thanks again!
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BK Books replied:
Hi Lisa, thank you sharing your father’s dying experience with us. Blessings! Barbara
Thank you for your books and your blog. It gives me comfort to read them. My Dad died in his bed at age 90, 10 years ago. He had medical issues for 10 years before he passed, but would not discuss them (he never spoke much anyway during the last 15 yrs of life), nor would he go seek medical advice. We had hospice, here in Fla., who hired people that did not seem to have much medical training or experience. But they were patient and kind with Dad, helping him bathe and dressing him, which we all appreciated very much. Their help allowed us to keep Dad at home until he passed. That is what was important, Dad got to pass in the house he built on the lake after WWII, the seemingly high light of his life (at 21 years of age as a bomber pilot over Germany). I learned so much from my Dad; patience, humor, joy (even though it was muted for Dad under his PTSD). And I learned how to die, with peace (I hope). Hospice gave us time to really connect. I was working full time during this period, and am so lucky that Dad died peacefully (I was not there but another family member was at his bed-side). I am really trying to think-through what my death means, how to navigate acute sickness (I had breast cancer 3 yrs ago), and how to really arrange my stuff as I get ready to pass (in ten years or more)? Thanks again!
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BK Books replied:
Hi Lisa, thank you sharing your father’s dying experience with us. Blessings! Barbara
Kim
My mom went to heaven about a month ago. I have seen a lot of death but more in hospitals where one can get medicine through an IV. If I could change everything I would have made sure my mom could have had an IV. It was horrible trying to give her morphine, which I have learned tastes horrible. I fricken hated that gurgle and my mom choking. Why? We read that book The Eleventh Hour over and over, we were not prepared from Hospice at all. Could she have had an IV and the opportunity to stay calm. It was a horrible day for her and something I cannot forget. There has to be a better way! I hope you really think about this Barbara and see if there could be some universal guidelines.
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BK Books replied:
Kim, to answer your questions: Giving anything IV in the days to hours before death is not a good choice. The body is shutting down, nothing works right, kidneys, lungs and heart. There are other ways of administering drugs, morphine included, that does not involve IV’s (rectal, under the tongue or in the corner of the mouth), you can even have it in lotion form and rub it into the skin. The gurgling and choking often is part of the minutes to hours before death comes. I’m sorry you did not have the support and guidance from hospice that would have helped you understand what was occurring. Blessings! Barbara
My mom went to heaven about a month ago. I have seen a lot of death but more in hospitals where one can get medicine through an IV. If I could change everything I would have made sure my mom could have had an IV. It was horrible trying to give her morphine, which I have learned tastes horrible. I fricken hated that gurgle and my mom choking. Why? We read that book The Eleventh Hour over and over, we were not prepared from Hospice at all. Could she have had an IV and the opportunity to stay calm. It was a horrible day for her and something I cannot forget. There has to be a better way! I hope you really think about this Barbara and see if there could be some universal guidelines.
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BK Books replied:
Kim, to answer your questions: Giving anything IV in the days to hours before death is not a good choice. The body is shutting down, nothing works right, kidneys, lungs and heart. There are other ways of administering drugs, morphine included, that does not involve IV’s (rectal, under the tongue or in the corner of the mouth), you can even have it in lotion form and rub it into the skin. The gurgling and choking often is part of the minutes to hours before death comes. I’m sorry you did not have the support and guidance from hospice that would have helped you understand what was occurring. Blessings! Barbara
JoanneCafiero
This story really hits a nerve for me. My dad had COPD and was 91. There were no other therapeutic options for him however he was ambulatory, lucid and wanted to live. He had his final wishes written and wanted everything done to help him and did not want a DNR. Hospice came to his home and immediately told the nurses aid we had hired to help him, to leave. Dad had lost a lot of weight and although he looked so very thin, I think hospice freaked out at his appearance. They gave him an anti-anxiety patch and started morphine. He died 3 hours later. None of us were able to be with him to say good-bye, or offer him comfort or tell him how much we loved him. Fortunately, he passed in bed with my mom holding his hand. No one else was there, not even the nurses aid who was told to leave. This was in Vero Beach, Florida and I will never forgive the insensitive and controlling hospice personnel that managed this most important part of my dad’s life and did so without family members present. This happened in 2011. I am currently a leukemia patient and, of course, his daughter. I am thinking long and hard about how I want my own passing to be. Certainly not like Dad’s. Thank you for the opportunity to tell my story.
Kindly,
Dr Joanne Cafiero
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BK Books replied:
Joanne, this is not how we want hospice care. I’m so sorry you did not get the guidance and support during your father’s dying hours. You might contact the hospice administrator and express your concerns. It won’t change your experience but may help others. Blessings! Barbara
This story really hits a nerve for me. My dad had COPD and was 91. There were no other therapeutic options for him however he was ambulatory, lucid and wanted to live. He had his final wishes written and wanted everything done to help him and did not want a DNR. Hospice came to his home and immediately told the nurses aid we had hired to help him, to leave. Dad had lost a lot of weight and although he looked so very thin, I think hospice freaked out at his appearance. They gave him an anti-anxiety patch and started morphine. He died 3 hours later. None of us were able to be with him to say good-bye, or offer him comfort or tell him how much we loved him. Fortunately, he passed in bed with my mom holding his hand. No one else was there, not even the nurses aid who was told to leave. This was in Vero Beach, Florida and I will never forgive the insensitive and controlling hospice personnel that managed this most important part of my dad’s life and did so without family members present. This happened in 2011. I am currently a leukemia patient and, of course, his daughter. I am thinking long and hard about how I want my own passing to be. Certainly not like Dad’s. Thank you for the opportunity to tell my story.
Kindly,
Dr Joanne Cafiero
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BK Books replied:
Joanne, this is not how we want hospice care. I’m so sorry you did not get the guidance and support during your father’s dying hours. You might contact the hospice administrator and express your concerns. It won’t change your experience but may help others. Blessings! Barbara
Robert
I would ask if the hospice involved in this case was for profit or not. As more and more hospices move to a for profit model it appears that corners are being cut and nurses may not have the time to do proper education. I wonder if Barbara could speak to that at some point.
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BK Books replied:
Hi Robert, just like anything there are “good” hospices and “not so good” hospices. This is why it is important to shop hospices before you commit to one. Just because your physician or hospital refers to a specific hospice does not necessarily mean there aren’t better ones out there. Check my blog page for questions to ask when choosing a hospice. Blessings! Barbara
I would ask if the hospice involved in this case was for profit or not. As more and more hospices move to a for profit model it appears that corners are being cut and nurses may not have the time to do proper education. I wonder if Barbara could speak to that at some point.
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BK Books replied:
Hi Robert, just like anything there are “good” hospices and “not so good” hospices. This is why it is important to shop hospices before you commit to one. Just because your physician or hospital refers to a specific hospice does not necessarily mean there aren’t better ones out there. Check my blog page for questions to ask when choosing a hospice. Blessings! Barbara
Deborah Coffey
Regarding morphine at the end of life-yes. Yes it does exacerbate the condition and suppresses breathing, resulting in an earlier death than a natural death. If a patient wants an “easy landing” and has no apparent pain, and many patients do not have any pain, then if that is determined, hospice nurses should NOT push morphine every two hours as dictated by “continuous care” nurses. We fired a hospice company because they insisted on giving my father morphine even though we determined by asking our very lucid father , who specified that he was not in pain, and therefore, didn’t need it. We were living in his home and doing his daily care working with him closely, right alongside the nurses. We knew he did not need the morphine, yet they pushed it. This needs to be addressed on a large scale.
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BK Books replied:
Deborah, good for you for being proactive. So often we give our personal power away to others in thinking they know what is right for us. Sometimes maybe, but often we know what is best for ourselves. Blessings! Barbara
Regarding morphine at the end of life-yes. Yes it does exacerbate the condition and suppresses breathing, resulting in an earlier death than a natural death. If a patient wants an “easy landing” and has no apparent pain, and many patients do not have any pain, then if that is determined, hospice nurses should NOT push morphine every two hours as dictated by “continuous care” nurses. We fired a hospice company because they insisted on giving my father morphine even though we determined by asking our very lucid father , who specified that he was not in pain, and therefore, didn’t need it. We were living in his home and doing his daily care working with him closely, right alongside the nurses. We knew he did not need the morphine, yet they pushed it. This needs to be addressed on a large scale.
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BK Books replied:
Deborah, good for you for being proactive. So often we give our personal power away to others in thinking they know what is right for us. Sometimes maybe, but often we know what is best for ourselves. Blessings! Barbara
Kelly Sturgeon
Thank you for your books and blog! I use them almost daily in my work either for my team’s training or family education. Your blog gives me hope for better approaches and understanding to how caregivers and family can truly be helpful with end of life in our culture — that just wants it to be like you said: in the movies. What came to mind reading this blog was that in 99% of cases I have been involved with, hospice nurses usually start morphine at very low doses and frequency. Each person is unique and will respond in their own way. I just worked with a resident who was opioid naive and yet needed 10mg then 20mg almost hourly for labored breathing that took nearly 24hrs to finally see her in a place of comfort. I have learned that each situation is different and hospice nurses can be different too. The hospice nurse may have been able to assess for pain and see what her daughter could not. But her question was so important and sad that she either didn’t feel comfortable asking or didn’t have the support she needed as she is trying to be there for her mom. Education is the key for all involved and so needed to create trust. Thanks again for your wonderful work.
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BK Books replied:
Hi Kelly, well said. Blessings to you in the good work you are doing. Barbara
Thank you for your books and blog! I use them almost daily in my work either for my team’s training or family education. Your blog gives me hope for better approaches and understanding to how caregivers and family can truly be helpful with end of life in our culture — that just wants it to be like you said: in the movies. What came to mind reading this blog was that in 99% of cases I have been involved with, hospice nurses usually start morphine at very low doses and frequency. Each person is unique and will respond in their own way. I just worked with a resident who was opioid naive and yet needed 10mg then 20mg almost hourly for labored breathing that took nearly 24hrs to finally see her in a place of comfort. I have learned that each situation is different and hospice nurses can be different too. The hospice nurse may have been able to assess for pain and see what her daughter could not. But her question was so important and sad that she either didn’t feel comfortable asking or didn’t have the support she needed as she is trying to be there for her mom. Education is the key for all involved and so needed to create trust. Thanks again for your wonderful work.
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BK Books replied:
Hi Kelly, well said. Blessings to you in the good work you are doing. Barbara