National Hospice Pioneer, Barbara Karnes, RN explains why she wrote her new booklet/resource, PAIN AT END OF LIFE for families, death doulas, nurses, hospice staff.

Why I Wrote My New Booklet: PAIN AT END OF LIFE

In todays culture with the opioid crisis rampant, fear of narcotic use is everywhere. That fear hinders our ability to provide appropriate comfort management and is leading to misconceptions about how hospice takes care of their patients. I hear way too often that “Hospice killed my mother by overdosing her with morphine”... 
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In April of this year I did a webinar for Wellsky on pain at end of life. Pain management at end of life requires a different approach than pain management for someone who is going to get better. Not enough people, healthcare professionals included, understand this.

After the webinar, reviewing the response and the resulting questions I realized how very important this information is. Everyone needs to know what we had just spent an hour discussing, not just healthcare professionals but families faced with a loved one on hospice or in the hospital dealing with pain. I took my notes from the webinar and wrote a new booklet, Pain at End of Life.

In todays culture with the opioid crisis running rampant, fear of narcotic use is everywhere. That fear hinders our ability to provide appropriate comfort management and is leading to misconceptions about how hospice takes care of their patients. I hear way too often that “Hospice killed my mother by overdosing her with morphine”. Knowledge reduces fear and knowledge is very much needed when it comes to addressing pain at end of life.

I have learned over the years that talking with our families, teaching them about end of life care, medications, and pain management requires repetition. Repeat, repeat, repeat what we want them to know, understand and remember. THEN leaving written materials behind to be read and shared with others reinforces our teaching. The written word is the best way to insure our teachings are understood.

Using fifth grade level, large print, non medical terminology, Pain at End of Life addresses:

* pain as it relates to the dying process

* fear of overdosing and addiction

* standardized dosages

* around the clock administration

* laxatives

* uses of morphine

* sedation as it relates to dying

* supplemental therapies

Something More... about PAIN AT END OF LIFE

I am so excited to offer this educational booklet, I think it will make a difference. You may purchase it on my website: www.bkbooks.com

10 comments

Traci Eaton

I still keep asking myself and all areas of medical care, why we have to make ourselves or our loved ones suffer to the last second. I know that I won’t want to hang around in pain which can only be relieved by being drugged insensible so that I can be nibbled to death by ducks. The right to choose, for myself, when enough has become too much. The right to say, beyond this point I do not choose to stay here and suffer any longer. This is a choice which should be obvious to any rational person. I have sympathy for the medical profession of “healers” and I strongly believe that helping the person who can clearly state their wish to die with dignity in their own time is the ultimate in healing. Thank you for what you have done to make the conventional dying process more humane and less of a struggle for the survivors. It is time to make it more humane and dignified for the dying.

I still keep asking myself and all areas of medical care, why we have to make ourselves or our loved ones suffer to the last second. I know that I won’t want to hang around in pain which can only be relieved by being drugged insensible so that I can be nibbled to death by ducks. The right to choose, for myself, when enough has become too much. The right to say, beyond this point I do not choose to stay here and suffer any longer. This is a choice which should be obvious to any rational person. I have sympathy for the medical profession of “healers” and I strongly believe that helping the person who can clearly state their wish to die with dignity in their own time is the ultimate in healing. Thank you for what you have done to make the conventional dying process more humane and less of a struggle for the survivors. It is time to make it more humane and dignified for the dying.

Claudia Hauri

Once again Barbara, thank you for sharing your yrs of experience with all of us.
JOYCE….I’m a nurse practitioner (NP) since 1976 & have to say that there are rotten apples in every barrel. The worst scenario: said NP may have been a new NP & before an RN inacute care, neonatal nu, Ob/Gyn nurse, & was having doubts about her new role. On top of that many physicians oppose the practice of NPs & limit their autonomy to make health care decisions. On top of THAT, the new fly-by-nite Universities that have only on-line programs are preparing inadequate nurses AND NPs to practice.
I advise ALL patients entering any hospital to have a advocate check the patients care, ask ?, ask the rational for treatment, the pros & cons (latter rarely discussed) & a 2nd opinion if in doubt. The same goes for hospice care. Some are excellent, some are not. Profit vs. non-profit. Sending you peace & hugs, C

Once again Barbara, thank you for sharing your yrs of experience with all of us.
JOYCE….I’m a nurse practitioner (NP) since 1976 & have to say that there are rotten apples in every barrel. The worst scenario: said NP may have been a new NP & before an RN inacute care, neonatal nu, Ob/Gyn nurse, & was having doubts about her new role. On top of that many physicians oppose the practice of NPs & limit their autonomy to make health care decisions. On top of THAT, the new fly-by-nite Universities that have only on-line programs are preparing inadequate nurses AND NPs to practice.
I advise ALL patients entering any hospital to have a advocate check the patients care, ask ?, ask the rational for treatment, the pros & cons (latter rarely discussed) & a 2nd opinion if in doubt. The same goes for hospice care. Some are excellent, some are not. Profit vs. non-profit. Sending you peace & hugs, C

Ann G.

Barbara,
Just wanted to say thank you. You continue to be an inspiration to so many. I’ve learned so much from you!
Ann

Barbara,
Just wanted to say thank you. You continue to be an inspiration to so many. I’ve learned so much from you!
Ann

sandee foreshee

i can never express enough my gratitude for barbara. my mother died from pancreatic cancer, i was her care taker, daughter, to day 0. i had so many questions and concerns, not only through the hospic experience, but long and lingering afterwards. we had an awesome hospice team that i think i called everyday several times at the last 10 days of my moms life. they had given “the blue book”, in the initial care package for my mom. that book became as such to me l, like my own bible and i dont believe i could of done it (cared for her by myself) if not for the likes of that book. thank you barbara for truly being the person that cares and reaches out to all who want to understand. ive benefited every single tme, in diffrent ways, in all of your blogs, from morphine choices and why, to getting order in the house, religion…and on and on and on. i highly recommend to anyone who is faced with the challanges (everyone), to engage in the resources available here. i believe life is for the living, that to me just makes sense!
thanks again
you are an amazing woman!

i can never express enough my gratitude for barbara. my mother died from pancreatic cancer, i was her care taker, daughter, to day 0. i had so many questions and concerns, not only through the hospic experience, but long and lingering afterwards. we had an awesome hospice team that i think i called everyday several times at the last 10 days of my moms life. they had given “the blue book”, in the initial care package for my mom. that book became as such to me l, like my own bible and i dont believe i could of done it (cared for her by myself) if not for the likes of that book. thank you barbara for truly being the person that cares and reaches out to all who want to understand. ive benefited every single tme, in diffrent ways, in all of your blogs, from morphine choices and why, to getting order in the house, religion…and on and on and on. i highly recommend to anyone who is faced with the challanges (everyone), to engage in the resources available here. i believe life is for the living, that to me just makes sense!
thanks again
you are an amazing woman!

Gwen Thomas

Thank you SO much! Just got off the phone with a patient and family regarding this very thing. I immediately ordered when I got the email notice.

Thank you SO much! Just got off the phone with a patient and family regarding this very thing. I immediately ordered when I got the email notice.

Don

Barbara, my wife died almost 12 years ago after battling breast cancer for 3 years. Toward the end, Oxycodone, Fentanyl patches, and ultimately oral morphine were the order of the day, in increaasing dosages w/ hospice nurse approval. Addiction was not an issue for her as she was at the end of the trail, but I suppose that could be an issue for family/caregivers who have access to medications (it was not for me/us).

I was very grateful that something was available in those final days, and hope that the current addition concerns do not deprive dying patients of relief at the end of their lives. Thank you very much for your continued efforts to provide vital information for hospice patients, family members, and other caregivers.

Barbara, my wife died almost 12 years ago after battling breast cancer for 3 years. Toward the end, Oxycodone, Fentanyl patches, and ultimately oral morphine were the order of the day, in increaasing dosages w/ hospice nurse approval. Addiction was not an issue for her as she was at the end of the trail, but I suppose that could be an issue for family/caregivers who have access to medications (it was not for me/us).

I was very grateful that something was available in those final days, and hope that the current addition concerns do not deprive dying patients of relief at the end of their lives. Thank you very much for your continued efforts to provide vital information for hospice patients, family members, and other caregivers.

Anne

Thank you, Barbara, for all you do.

Thank you, Barbara, for all you do.

Boots Few

Congratulations and many thanks for the new book Pain at End of Life.

The materials in your books have been educational and comforting to me for 16 years. That is why I purchase and share (e.g. give) your books to family, friends and individuals that I encounter who needed direction, comfort, and information at this difficult time.

Thank you

Congratulations and many thanks for the new book Pain at End of Life.

The materials in your books have been educational and comforting to me for 16 years. That is why I purchase and share (e.g. give) your books to family, friends and individuals that I encounter who needed direction, comfort, and information at this difficult time.

Thank you

RONEE HENSON

EXCELLENT !!!!!

EXCELLENT !!!!!

Joyce

Some of us who have had an experience with a NURSE PRACTITIONER who was afraid to prescribe morphine as recently as a month ago to someone on Hospice Care are still livid that the Medical Profession hasn’t yet caught up with what some Families DO know!!

This took place in the city of Columbia, Missouri— a Medical City sporting the University of Missouri Hospital, Barnes-Jewish-Christian Hospital, a satellite Hospital linked to the prestigious Barnes Hospital of St. Louis, MO, and the Missouri Veterans Hospital.

Some of us who have had an experience with a NURSE PRACTITIONER who was afraid to prescribe morphine as recently as a month ago to someone on Hospice Care are still livid that the Medical Profession hasn’t yet caught up with what some Families DO know!!

This took place in the city of Columbia, Missouri— a Medical City sporting the University of Missouri Hospital, Barnes-Jewish-Christian Hospital, a satellite Hospital linked to the prestigious Barnes Hospital of St. Louis, MO, and the Missouri Veterans Hospital.

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