Pain at end of life is so misunderstood. It seems like the letters I receive from family members saying “Hospice gave my mom morphine and they killed her” are increasing instead of decreasing.
SO here are my thoughts on how to help our families: education, education, education. Before beginning use of morphine or fentanyl sit down with primary caregivers and begin their education.
I wrote the booklet Pain At End of Life to address the misunderstandings and fear that surrounds narcotics at the end of life. Pain management for someone at the end of life is different from pain management for someone who is going to get better. Families don’t know this and often neither do health care providers.
It is not enough to give the booklet to the family and say “read this.” Half the time they don’t, and the other half they will have questions as they read it, but forget to ask when you are with them. You want a face-to-face, "let’s sit down and read this booklet and talk about it together" kind of teaching.
When charting, be sure to include that the reading was done and questions were asked and answered. It’s a “cover your tush” kind of charting, BUT it is also good family care. You are educating, and by educating you are reducing the fear, anxiety, and misinformation that are so often present.
Not everyone who is dying has pain. Disease causes pain. If pain is not present, a narcotic is not appropriate (except a tiny bit can ease labored breathing if it is present ——- sometimes).
So often we jump into morphine or fentanyl use when a lesser drug will do the job. Occasionally Ibuprofen can make a person more comfortable. Ativan or Haldol can also be beneficial.
Pain management needs to be individualized. There is no go-to end of life drug for everything we don’t have time to manage. There should be no standardized dosage or use.
INDIVIDUALIZED! The “take two aspirins and the headache will go away” format doesn’t apply to end of life pain management. It takes time and expertise. Narcotics are not a one-size-fits-all kind of drug. It is also a last resort kind of drug for pain.
Something more... about Demystifying Narcotics for Pain at End of Life
If we don't want our special person to die in pain, we must allow the experts to guide us. Hospice nurses are experts in administering and controlling pain for the dying. Ask as many questions as you need to and read the booklet, Pain at End of Life: What You Need to Know About End of Life Comfort and Pain Management. It is part of the discounted bundle, End of Life Guideline Series.
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So often families struggle with imminence even though they know it is inevitable that their loved one will pass. I often hear families say I don’t want to be selfish and want them to be pain free/less agitated but they continue to refuse palliative sedation because as they struggle with their loved one losing consciousness. They scream in pain during wound care/repositioning/ PAINAD 10 at rest but still refuse any medication that can be sedating. Education alone seems not to be enough and I’ve been told this is the family’s journey and not to be too pushy w/symptom management even if you are advocating for the patient and have the best of intentions. The family is the consumer and they will be providing a review of services rendered which Medicare eventually looks at and so does my manager. They eventually switch to another nurse after deliberating with social worker. The nurse was too pessimistic or aggressive with med mgmt they might conclude but even after switching nurse the patient may continue to suffer? I try to collaborate with MSW and SC for additional support regarding CG’s lack of coping and struggles ASAP when I realize there may be an issue but it does not seem to help me or the patient. What else can I do to help families struggling with effective symptom mgmt. The more I try to do what is right the more I am discouraged by my coworkers that dismiss concerns who are comfortable with just letting it play out just to save face or avoid uncomfortable conversations. It’s how you said it and not what you said I have been told even though I’ll be in a room w/multiple family members and 75% of them agree but it’s that 25% that get angry and complain. I’ve been an acute care nurse 20 years and have been in hospice 5 years. It’s not for lack of experience or rhetoric sensitivity because I am aware when to dial it back. How do I and my MSW/SC help navigate caregiver struggles without getting thrown under the bus when things get rough.
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BK Books replied:
Hi ATP, You gave me a topic for a blog. The ideas are too long for this comment section. Blessings to you in the work you are doing, Barbara
Sooooo important and needed information!!
Thank you Barbara.
I am mexican and wonder if your books have been translated to Sanish.
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BK Books replied:
Hi Laura, all of my booklets are translated into Spanish. Thank you for asking Blessings! Barbara
I am so glad you are discussing this matter. Way back in 1966 when my father was in the dying process he was hospitalized for a neurotomy to decrease his pain. The evening before the surgery, he asked for pain medication, and the medication nurse, even though the medication was ordered and the appropriate time had passed since his last dose, said, “He has to wait because we don’t want him to get addicted”. I couldn’t explain to her that he was ordered the medication, and in all probability he would not need pain relief after his procedure that was indicated because his pain was so difficult to control. This topic is very important, and the study of this information should be required for all caregivers no matter if they are professionals or family.
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BK Books replied:
Elinor, I agree with you 100%. Blessings! Barbara
Hi,
I need to correct something in post above:
In sentence before last paragraph I write about the confusion re: what is negative drug reaction and what is the dementia because the two are very different and should not be confused.
In the situation with my mom, my siblings thought the negative med reactions WERE the dementia and it was not. It was the contraindicated meds.
Hospice did nothing to help clarify, educate, defuse upset and confusion.
Hope that clarifies because my comment in first post about this issue (negative reaction to meds vs dementia) above was not clear/was written incorrectly.
Hi Barbara,
My mom didn’t tolerate opiods nor benzos in general. That was known before she ever had dementia and was documented. These meds caused her to have very confusing and frightening hallucinatory events…they did same with her father and he had zero dementia with age.
When hospice came in with my mom’s case, they came in with their opioids and benzos and she was given these the last 2 weeks of her life. It was horrible. In last 2 weeks family members not previously involved with her care for months, along with hired caregivers and hospice pressed on with these drugs. Wrong drugs for her. Basically hospice was unaware that generic fioricet which managed Mom’s pain was compounded at a pharmacy in town. I only became aware after I searched it out (while she was being given the contraindicated meds). I think hospice could not imagine how 3 Fioricets a day would manage her pain. I watched my mom being overmedicated to the point of unresponsiveness. The benzos made her high as a kite…paradoxical reaction. I fought for my mom to be given right meds not contraindicated ones and was basically shunned and now a year later my siblings will not speak to me or my husband (we are ones who live here in same town with my parents.) It was especially bothersome that my siblings (and I guess hospice and caregivers) were sure the negative reactions to opioids and benzos were NOT dementia…it was negative and harmful side effects.
I do think hospice should not just come in with opioids and benzos like they often do. Or they should not use these meds when they are contraindicated. Was absolutely a nightmare.
Lost my mother and family blew up…and hospice took no accountability. I wish we’d never called hospice in.
Thanks,
Sally
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BK Books replied:
Oh, Sally what a horrific experience and from what you described the ramifications are still playing out all this time later. If you truly believe hospice was negligent go to Medicare.gov and file a complaint against the particular hospice. If we don’t hold agencies accountable nothing will change. Blessings to you and your family Barbara
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