I Love Hospice and All It Does

Someone recently pointed out to me that I seemed overly critical of hospice in an interview on a podcast, that I was “turning my back on hospice.”  I want to clarify my thoughts about hospice in today’s environment.

Yes, I talk about how understaffed and overworked the existing staff is in many hospices. I am critical of medicare’s increasing control through endless and often pointless regulations. Regulations that have become more and more time consuming and labor intensive. It seems that meeting regulations has become more important and taken priority over actually providing comprehensive patient care. 

When you have one cup and 2/3 of that cup is filled with regulations you are left with only 1/3 of the cup for patient care—a cup only holds a cup no matter how much you want to put in it. 

Staff is being forced to see more patients but using the cup analogy there are only so many hours in the working day so the result of more patients per nurse or social worker means less time spent with those very patients we are meant to serve. Primary care nursing (the same nurse with the patient and family vs a different nurse each visit) is also becoming more scarce in the service provided. 

All of this profoundly affects the emotional state of staff who, for most, working with end of life is a heart driven choice; who, for most, end of life work is more than a job but a calling!

Back to “turning my back on hospice:” I haven't "turned my back on hospice." I love hospice and all it does and stands for. I was one of the pioneers in the late 1970 and early '80s. I helped bring the hospice philosophy to fruition, nurtured it, helped it grow.  What you heard is my frustration with the regulations that are strangling it, with the corporations that are abusing it. I am using my voice not to criticize the dedicated nurses, social workers, nurses aids, chaplains and volunteers that work tirelessly for this noble cause but to bring attention to the conditions they are being asked to work within. 

I am a voice asking for better.  In asking for better I have to point out what needs to be addressed.  Just as I asked the medical community in the '70s and '80s to provide better care for the dying, I am asking hospices today to see the changes that are occurring and to do better.

I am grieving my hospice vision. I am grieving that original idea that has changed over the last 50 years. That grief and sadness is showing itself in frustration.

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I hope that agencies provide training for their staff and education for their patients and families.  For instance, Gone From My Sight (aka: the little hospice blue book) helps staff support their families. There is something about giving a caregiver the blue book, showing them where Mom is in the dying process and that caregiver going back to the booklet at 3 am, when the goblins come out, and re-reading what they had read with their hospice nurse. The knowledge of what is supposed to happen, and the support they feel makes their satisfaction go up.  And CAHPS scores rise. Using NEW RULES for End of Life Care as a marketing tool as well as a teaching tool for new nurses is worth every penny.

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Dear Barbara, Thanks for putting this out there. I have only started my journey as an EOLD and can see how stretched hospice workers are. It is sad because the hospice workers want to do as much as they know should be provided but are constantly being challenged to ‘shore up’ the visit, I can sense their struggle. I know my role as an EOLD helps them know their clients are getting some of their needs met by me but most people don’t have EOLD’s and ‘the hospice system’ should not squeeze the humanity out of the process. One cup of hospice needs to be on cup of care, and not a teaspoon less. Thanks for such a well thought out post.


Well said. It truly takes a Hospice Heart to help patients and families in their journey. Regulations hinder care, do you spend quality time and care risking a financial backlash.
I love my caring for patients at end of life no matter their situation. Patient/family 1st.
BK Books replied:
Thank you Susie. Blessings to you in the work you are doing. Barbara

Beverly Tuomala

Thank you so much for saying what needed to be said! I am an RN in the field and the burden is tremendous – getting those visits and meeting those markers is exhausting, then there is the charting which most of it no one sees (talking about HCHB) but we have to chart to meet those Medicare Regulations, its repetitive and mindless. I don’t want to leave hospice, I love the work and like you said it is a calling…. My company really tries not to overburden us – we set our schedule and they try to leave us alone. Getting admitting nurses, evening/overnight nurses and LVN’s has really helped. Luckily they don’t push our productivity too much – but some days 3-4 patients is all you can see, and that’s got to be ok.


To Barbara and all of the Hospice staff commenting here—
My mom is under hospice care with 24/7 caregivers. She’s in FL and I live across the country in CA. My sister lives near my mom but the responsibility for her is carried by both of us. Thank you for this perspective and insight. I am beyond grateful for the wonderful, kind, patient, and knowledgeable Hospice nurses and aides that have been caring for my mom and supporting my sister and me by providing their guidance. It makes all the difference. Rest assured, I will express my gratitude to them. As well, knowing the pressure they are working under, I will try to be efficient with their time!
Hugs to all of you.
BK Books replied:
Hi Fay, thank you for your kind words about the hospice staff you are working with. I just want to say it is not your responsibility, as a caregiver, to be aware of the time constraints hospice staff may have. They are there to support, guide and care for you. Keep them as long as you need them. Their job is to be there for you. Blessings to you and your family. Barbara


Thank you for validating how many of us feel! You are absolutely correct! We are constantly being told that we are not meeting productivity because the hours we show on our time cards don’t match up to the algorithm of how long it should take you to see a certain amount of patients. Our patients and families need us more than ever. We are being asked to do more yet keep our hours within the productivity marker. We are moving farther and farther away from the true meaning of hospice and it is becoming more of a medical model. We are being forced to graduate clients with long term illness such as AD,PD, ALS because they don’t meet Medicare requirements. There is no extra help options for many of our clients and their families/caregivers. Dealing with regulations and the business end of things is the most stressful part of my job. Your analogy of the measuring cup is 100% correct! I can’t tell you how many times that I leave a home thinking I should be staying longer but I can’t because of
my schedule and seeing the required amount of visits daily. No one takes into account that some clients and families need more time than others depending on the situation. It is nothing for me to work 8 hours in the field and come home to another 3 hours of documentation. Then they tell us we need to have a work life balance!
BK Books replied:
Oh Sharon, I hear you! Blessings! Barbara

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