July 25 2018
Written By
Barbara Karnes
Back To Blog

Where Is The Hospice I Know and Love?

Where Is The Hospice I Know and Love?


Barbara - August 21 2018

Hi Amy, what is the saying “you can please some of the people some of the time but not all the people all the time” ( or something like that) Examine your interactions with the family that requested another nurse. Look at yourself honestly. Could you have done anything differently or better? We always do the best we can in any situation. None of us sets out to to a poor job BUT some days are more challenging than others and we can be less patient, less friendly, not our best selves. With self examination we can learn from our findings. With the self examination done put it behind you and move on. Also sometimes personalities just don’t mesh. Your years of nursing experience without difficulty tells me there was probably just a personality disconnect. A question: do you think your being new to hospice showed as uncertainty and prompted a change request?Amy, thank you for reaching out to me. My blessings are with you as you continue doing this special work for those approaching the end of their life. Barbara

Amy - August 21 2018

I am happy to find this blog. I am a RN new to hospice from a case manager stand point. I have years of nursing experience also in home care. I am passionate about this work a put my whole heart into everything I do. I recently had a family ask for another nurse this has never to me before and my patients usually say they are very happy with my care. Any words of wisdom or thoughts ? I never want a patient and their family to feel their needs are not being met?

Susan Barber - August 02 2018

THANK YOU!!!! I can’t tell you how often as a Community Education Manager, I hear these kinds of comment. I worked for one of those places, it was horrible for patient’s, for their families and for the staff.

My message is: Educate yourself about hospice before you need it.
Here are some things to consider
1. Locally founded, locally staffed and community bound hospices are often the best choice
 2. Not all hospices are created equal

3. Profit vs person is a real and often dangerous reality now

4. Making a decision after getting an unexpected and awful prognosis is NOT the time to navigate this territory.

5. Look online, see what people say about your local hospices, talk to friends, family, neighbors, see what their experiences are

6. Make good use of the hospice volunteers, who often have lots of time to spend

7. Fire a hospice that doesn’t meet your family’s needs.

8. Hospice has already been paid for by your contributions to Medicare

9. Spend at least as much time selecting your hospice as you might your next car

10. Choose hospice as early as possible, when you or your loved one isn’t actively dying.

Barbara - July 28 2018

Hi Anne, we kindred spirits have to stick together. I am finding there are a lot of us who see the not so positive changes that have occurred in our beloved hospice. Our job is to hold the Light so it won’t be dimmed forever. Blessings to you in the work you are doing. Keep doing it. Barbara

Anne Lucas - July 28 2018

Thank you so much for this article. I have been disappointed also with the decline in the care of Hospice patients and the apathy shown by Hospice companies and the nurses working with said companies. As an RN of 33+ years with Hospice experience I also hear and am saddened by stories I hear from patients and families. It seems that nurses are seeking out Hospice employment because it’s easier than working in a hospital…but so many of these nurses do not realize that taking care of patients and families in Hospice settings is not an 8 hour a day job. It needs to permeate your soul so these patients and families can get the very best of what you have to give. I am glad (but sorrowful also ) that I am not the only one seeing these changes. You have to put your heart into taking care of people in some of the most traumatic periods of their lives. Thank you for allowing me to vent to someone I know understands..

Janet Birkenholz Miller - July 27 2018

I experienced some of this from another state while my mother was in her last days. When I got the call to come, I immediately called the nursing home, and they gave me no comfort whatsoever. I understand that hospice in the facility where she was staying was less than helpful. When I got there (too late, unfortunately), my brother told me that he had been given no choice of a hospice; someone was called in, and that was that! It was a BUSINESS they were in; not the loving, caring hospice setting that Barbara condones. Too sad. Surely, we can do better than this.

Barbara - July 26 2018

Hi Judy, I am sorry you had an unpleasant, non helpful hospice experience. It is challenging enough for us when someone we care about is dying without having the added burden of not receiving the care and support that is promoted. I am pleased you told the agency of their failings. Of course how someone responds is not always as we imagined. If you still feel unheard you can file a complaint at or tell a Medicare beneficiary ombudsman that you would like to file a complaint. Again I am sorry for your experience. Try to remember the good moments with your loved one. There is your treasure. Blessings! Barbara

Gail Weatherill - July 26 2018

I appreciate that you have raised this subject, Barbara. For many years, I never heard a negative word about hospice care from consumers. The reviews were always glowing. I worked as a hospice nurse “back in the day” and considered the work sacred. Like so many things in health “care”, hospice’s image has deteriorated in recent years. As the admin for a large Facebook support group for dementia caregivers, I hear more and more sad tales similar to the one you relay here. The pressure to do more with less has taken a toll on professional caregivers. Unscrupulous investors have spotted hospice as a potential lucrative endeavor. Each new case of fraud discovered means more regulation and less time for bedside care. Electronic health records have been both a blessing and a curse. I share your sadness to see the changes in the quality of the care families can expect. Thankfully, while the incidence of poor care is increasing, it still remains very much the exception rather than the rule.

Barbara - July 26 2018

Hi Jean, thank you for commenting on my blog. Hospice started outside of the medical model but once reimbursement was offered hospitals and home health care agencies started offering hospice services. Gradually the philosophy faded from its original intent. Yes, reimbursement and the increased micromanagement by Medicare seems to be a part of the changes. I have to repeat that there are great hospices out there. I just want ALL hospices to provide great, knowledgable service. Blessings to you! Barbara

Sherry - July 26 2018

I first of all as a Hospice Professional felt very sorry that the industry I love has not shown this patient/family why this is the greatest benefit Medicare ever offered. I hope that the someone with that provider is reading these comments and something is “stirred” up in that person that makes he/she an advocate for this service provided by that organization.
Finally, I just wanted to point out how wonderful this loved one is. She did not look for fault with the organization. She found ways to let them off the hook. This is a heart that should be (at an appropriate time) in the world of hospice making the care given. Better, always Better. She will understand the need and work to make sure that families feel supported. May she and her family be comforted and blessed.

Barbara - July 26 2018

Hi Linda, thank you for sharing your positive experience with hospice. There are many very good hospices. I just want ALL of them to provide the highest quality of care. Blessings! Barbara

Barbara - July 26 2018

Hi Lilibeth, Thank you so much for sharing your vision and ideals with me. You are providing hospice care as I saw it all those many years ago. You are a living example that quality begins at the top. Blessings to you and your staff in the compassionate, capable work you are doing. Barbara

Susan - July 26 2018

I’m furious! you don’t need to be treated like this. I would be calling CMS and the state and reporting these behaviour after you talk to a supervisor. There are other hospice options available beside the one you are presently enduring

Joanne Ciampi - July 26 2018

It saddens me to hear such remarks. I am happy to report I work with a great hospice team that does its best to go above and beyond what many would expect. I was able to experience the work of a hospice in another state when my sister wsa dying, and sadly, I was disappointed in what I observed and heard – especially after speaking with one of the nurses and the aide who was caring for my sister. My nieces, the primary caregivers, told me they didn’t really understand hospice or what to expect from it until I arrived and starting answering their questions. I hoped it was an isolated case.

Cathy L. Bacinelli, LSW - July 26 2018

I am so sorry for the disrespect your friend’s family has been shown. Not all hospices are like that, in fact, as you know, most are staffed with genuinely caring and professional people. Your friend should not have to put up with this . She is dealing with enough knowing her father’s time is limited. I agree with you, she should consider getting a different hospice company. There is absolutely no excuse for the way she is being treated-as an after thought. How do you “accidentally” drop meds off a med list?? I never heard of such a thing. Where is the Social Worker or Chaplain to help this family talk through their concerns? If you can’t handle the job, perhaps you should rethink your career path. Hospice is about helping, not hurting.

Lilibeth Johnson-Mee - July 26 2018

Dear Ms Barbara,
I just want to let you know that you are just such an inspiration everytime I read something you write. I’ve been a hospice nurse for a while and it gave me a different perspective in life . I decided to open my own hospice agency and provide a more holistic, natural way of taking care of our patient’s. As the owner, I have involved myself in the daily interaction with my patient’s and families, to make a difference. I value the life of everyone, treated them like they are family , encouraged them to tell their stories before they got sick but most of all provide them with dignity and respect. I now have found my peace and calling to serve the sick and the dying and I thank our Lord and Creator for giving me that because my patients are my greatest pride because they have given me love I can never pay back. I just want to thank you again for all the wonderful books that you have written because it makes my work easier.
With much respect,

Linda Hines-Cummins - July 26 2018

This story made me very sad. I cannot imagine having to bear such a lack of caring and professionalism. My mom, 93, is in a care home and I decided to put her on hospice in April of this year since her dementia and COPD were rapidly getting worse. I am so fortunate to have a hospice nurse that is absolutely the best. She keeps in touch after each visit with mom, she makes sure all her meds are being administered corr3ctly, talks with the care home manager each visit. Anytime Mom is having issues I have called her and she comes over within hours or if an emergency if she’s not available sends someone else. She spends as much time with Mom as she needs.

This is the same hospice I used two years ago for Dad. He had Alzheimer’s and they treated him with kindness and caring right to the end. I’m so fortunate to have Amazing Grace Hospice which is a local company here in Katy TX.

Rachel currsn - July 26 2018

Simple suggestion. Please consider calling your various books “booklets”. It might encourage some reluctant readers to actually order and read them. They all are well written, yo the point and beyond helpful. Thanks

Kathryn Weymouth, PhD - July 26 2018

I was sad, too, to read about this family’s experience. My mother was on hospice and it was an absolute godsend for us. We had Providence in Portland, OR, and there is no way that we could ever repay them for what they did for us. Every issue was addressed, many hours were spent going over medications and changing or adjusting doses both with in-person visits from the nurses and telephone consultations, the aides who came to tend to her hygiene were wonderful, the tenderness and respect that everyone gave my mother when they talked to her and ministered to her needs was heartwarming . . . it was exactly what hospice is supposed to be about.

We rate movies, restaurants, books, practically everything one can think of. Is there a resource that people can go to in order to see how hospice programs and services are rated? If not there should be. End-of-life issues should be eased by the services that are received, not exacerbated by substandard, unreliable care.

jean hogan - July 26 2018

Barbara, your blog, and especially your booklets have been so helpful to me as I try to reach out to those I know who have a loved one dying. At the same time, I’m seeing and hearing more and more of what your friend is experiencing regarding hospice. It’s so sad – for everyone.
Has hospice become too closely reliant upon gov’t funds and regulations that they now are unable to provide the care they once did? Or is there something else going on?
In any case, hospice isn’t what it used to be, at least not here in Sun City Center Florida.

Judy Fauth - July 26 2018

My experience with Hospice was not a good one. My husband passed March 16, 2018. I was not told what to expect, hospice was uncaring and failed miserably in the care of my husband. I was lied to. I vented in my critique and received a call from the Executive Director, Chaplain etc. They supposedly did some digging and I was apologized to. Today the Chaplain and a social worker paid me a visit and I thought everything was put in perspective. Then after they left my mail was delivered and a letter the Executive Director supposedly dictated and certainly signed off on arrived. It was a condolence letter offered for the loss of “Jerome”. My husband’s name was Donald. Need I say more. I ordered 4 of your booklets and have received more comfortable and knowledge from them than I ever did from the hospice that I entrusted my husband’s care. Thank you for letting me vent.

Joyce - July 26 2018

As A former hospice nurse I can not agree more that educating a family, being reliable, providing pain control is ever so important. Families trust hospice to provide and every care giver needs to be responsible to provide needs to their clients and families. Educate your self and give family a courtesy call if you have to change your schedule due to priorities of another client. , Be humble and take pride in your work. It is an honor to provide this specialized care to your client and their family members.

Page 1 of 2

Leave a comment

Comments have to be approved before showing up