I just finished answering five comments from my YouTube video on Morphine. There is so much misunderstanding, anger, and outright hate surrounding hospice and narcotic use.
Why? What has happened to cause such vitriol?
My first response is lack of education. Lack of time spent with primary caregivers and families teaching them about pain management at end of life. Teaching them about the signs of approaching death, teaching them what is normal and natural as death approaches.
As I’ve said many times people don’t die like they do in the movies but unless we teach families the difference, our work (hospice work) will be judged by what people see in the movies—-and again, people don’t die like in the movies.
Taking care of someone at the end of life is different from taking care of someone who is going to get better—-but most people don’t know that either. Unless we teach them otherwise our work will be judged by how people get better AND again we will fail in the eyes of the family and the community.
Educate! Educate! Educate! Education is 90% of our work in end of life.
Support and time spent is another HUGE component of our work. Spending time, teaching, guiding, and just being there will neutralize the fear and lack of understanding that everyone brings to the bedside as death approaches.
People die all the time (everybody dies). End of life workers need to convey to families that when the medical profession has determined that death is coming, here is what it will look like. Here is what will happen. Here is what to look for…
We instruct, instruct, instruct. Teach all you know about how narcotics work in end of life care. Teach what to look for that says, this too much, this is what to do about it, this is how long it will take to have an effect. If you, the professional, determine that death is near (hours even days), explain to the watchers why you are giving the narcotic, what it will do, what it will not do.
AND be present and available. The more time we spend with the family the more secure they will feel in being with their loved one when death comes. The more time we spend with the family and significant others the more confidence they will have in us and our expertise. Our very presence is reassuring.
When healthcare workers educate and spend time with families and significant others then fear of narcotics and fear of hospice will greatly reduce. And maybe I won’t get all these emails saying “hospice killed my mom.”
Something More... about The Anger Surrounding Narcotic Use at End of Life
My booklet, Pain at End of Life is written in large print and the information is conveyed in a simple, direct yet gentle manner. It is used to help support & educate families as well as new hires. This booklet is included in the End of Life Guideline Series.
This is the short video on YouTube that inspired this post: Mom died right after the hospice nurse gave her morphine
6 comments
So, Barbara addressed the true issue of overuse of narcotics while responding to Lorrie above. It’s not the same hospice and that validates my own experience. The director of Hospice of the Chesapeake was in my home and directing me and my terminal husband with specific amounts of 3 different narcotics. It was frightening, as well as criminal, the reaction my husband experienced. He was out of it for the next 18, after which I cut back the dosage dramatically so that he could be conscious, however he was never the same after that. I believe had the meds been managed better, he could have enjoyed another month of life and family. I, myself, suffered for those 18 hours believing that I was killing him. The nurse was shocked at the amounts. I don’t have any words other that it was a horrible experience. I will never trust Hospice after that experience.
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BK Books replied:
Oh Patty, what a horrific experience for you. I’m so sorry. Since the director of the hospice was the one giving the instructions (why was the director there and not one of the nurses?) your recourse is to file a complaint with medicare.gov. Hopefully by speaking up we can keep another family from the same experience. Blessings to you! Barbara
Dear Barbara,
I may not comment on every post you post, but please know I read ALL of them. I use Outlook for my E-mails and have a folder with your name, where I place all the E-mails/posts you send, after I read them.
Another great posting, you’re so right, Morphine and other assisting drugs for dying have been given a bad reputation. Thank you so much for clearing the fog surrounding that topic.
And, thank you for posting some of your recent questions and answers in your post. I read those as well, very informative.
I have learned so much from all of your postings. I had my 70th birthday this year, and find myself thinking more and more about dying.
But in reading all of your various topics, I feel more at ease about dying when my time comes.
Again, thank you for sharing yourself and your knowledge with all of us.
Sincerely,
Lolita :)
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BK Books replied:
Hi Lolita, thank you for your kind words about my work. I think your remark about being 70 and thinking more about dying is so normal and healthy. Do your Advanced Directive, talk with family about your wishes and then put them aside and live your best life. Each day is a gift. I ask myself before I go to sleep each night “What did I trade a day of my life” for as I recap my day. Then I ask “what was good about today.” This keeps me on track for living my best life. Blessings to you! Barbara
What is terminal agitation? My best friend struggled for hours, on hospice & despite the hospice meds. She took hours to pass in this state of loud groaning &;thrashing, sitting up & I’ve always thought she was ‘fighting’ death. I’ve been in turmoil about this for months.
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BK Books replied:
Hi Cathy, about your friend’s labor to leave this world. There are many similarities between birth and death. One of those is labor. We go through labor to enter this world and we go through labor to leave it. Just like in birth some women can sneeze and out pops the baby. For other women 36 hours later they are still wrestling to get the baby birthed. So it is with our labor to leave this world; for some it is easier than for others. It sounds like your friend had a difficult labor and you were there to support and love her. It was scary to watch but nothing bad or pathological was happening. My blessings are with you. Barbara
You are absolutely correct about educating family & loved ones on the use of narcotics at end if life. I was the primary caregiver to my FIL. He passed away this past March 9th, from colon cancer.
I have to admit, I was nervous to have many medications from morphine to haloperidol to lorazepam, in my house. My thoughts of these meds were all wrong. I thought they were only to be given by doctors, nurses and such because they were dangerous. I can only say that my thinking was from tv, media, professionals and such. There was no real knowledgeable truth until hospice came to help and I also did research and bought your end of life books. I was very fortunate to of had a wonderful, helpful and extremely knowledgeable hospice care help for not just my FIL but for me as well. I couldn’t have done it without their help. When my FIL transitioned, he had hallucinations and terminal agitation. He had these very badly and I was greatful for the medications to calm him and he could have a comfortable passing. The hospice nurses were there for me whenever I needed to be reassured that I was not drugging or overdosing him.
Thank you for all of your knowledgeable, valuable information and dedication to making these important articles and materials available to all who need them!
Sincerely, Becky Craft
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BK Books replied:
Thank you Becky for sharing. Your experience is an example of hospice work well done. It is important that others hear the positive outcomes with hospice as well as the negative. Your words are important. Blessings! Barbara
There’s a tremendous amount of excessive sedation going on…. not the same as when I was a hospice nurse from 1982 to 1992 when titrating dosages and finding just the right balance was an art form. I’ve seen people look like they are in “active dying” for up 2-3 weeks with cocktails of Haldol, morphine and lorazepam, usually by rectal catheter. Hospice is not “killing” them, but certainly preventing a conscious death with the transcendence and closure that often can occur when not heavily sedated. I’ve heard a hospice nurse say “when my time comes, I just want to be knocked out”. I volunteer 4 hours a week at a local free standing hospice. It’s a sad state of affairs. Too many have to ‘fight’ to have appropriate pain control and stay conscious in my opinion. I see way too much over medication these days in hospices.
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BK Books replied:
Hi Susan, yes, I agree with you there is a lot freer use of narcotics then when you and I were working. I also like the cautious way we used them. You and I were the pioneers for work that is now taken for granted. Thank you for your comment and bless you my fellow pioneer. Barbara
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