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.
Something More about... I Love Hospice and All It Does
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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I was a volunteer at hospice in the 2000’s and loved it. I am about to rejoin hospice but was told by the Volunteer coordinator that things have changed dramatically because of medicare regulations.
I have since been trained as an end of life doula, am in the midst of an extensive thanatology certificate program through The Open Center’s Institute for Conscious Dying and worked for two years as a caregiver for a terminally ill woman. I was also was a green burial volunteer for a year and a half, so needless to say this is a calling of mine.
I was pretty much flat old told with hospice I could use none of my doula training skills and could merely be a friendly visitor, which is generally fine but I am supposed to not initiate any conversations or really hold space for such conversations that a patient might initiate.
I was also told absolutely no touching, not even a hand massage! One must either be a licensed MT or nurse to touch a patient. We used to be able to do hand and foot massages along with a manicures if a patient wished to have one. No more. And in all honesty, the coordinator was somewhat put off by my doula training and said that the title and certification through INELDA pretty much meant nothing to them.
Incidentally a close friend of mine’s father died two summer’s ago and I supported her and her mother through his illness. Hospice never bothered with a follow up call after he died. Nothing. So much for her take that doula’s wouldn’t offer anything beyond what Hospice offered. What a bummer.
The irony is that I live in a so called progressive/liberal community. I guess end of life care is still conventionally minded medical care.
I now have mixed feelings about rejoining hospice. I guess I’ll see how it goes. I hope to in time hang a shingle as a doula, not to make money so much as to offer my community a different kind of support that is simply not available through hospice.
Thanks for bringing this up! It’s a much needed conversation.
Julie
Barbara,
I can not begin to thank for your assessment and comments. I am retired Community Health Nurse with a passion for end of life care. It is sheer pain, as a volunteer, after 50 years of nursing,to watch the current environment of hospice care. Even as a volunteer, I was beginning to be restricted in what I was able to be doing. Everything was feeling tense, tight and limited. Several times it brought me to tears. Then Covid arrived, my volunteering was curtailed. I have not started again. I am going to do my best with family and friends who have end of life needs. I will not be able to give up my joy and gratitude for being able to help another pass.
Molly
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BK Books replied:
Hi Molly, I’m sorry to hear of your frustration with the changes that have occurred in hospice. Do you think that by continuing to volunteer for them you can make your voice heard, that you can help the administration see care differently? It would be a shame for them to lose a dedicated volunteer. Blessings to you. Barbara
Barbara, I read your original article and never felt you were turning your back on hospice. I have had the same thoughts regarding regulation, that being that regulators regulate because that is what they do. We have allowed ourselves to be over regulated by acquiescing to the system’s demands or they will withhold money. In your mind, is there a way out? Can we take some steps away from reliance on the outside funding and avoid the regulatory constraints?
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BK Books replied:
Hi Doug, this week I became aware of two hospices that are totally not for profit, are not certified by medicare, are mostly volunteer staff and go to the community for support and funding. This is how hospice began in the 80’s. Are we coming full circle? End of Life doulas are also coming into the picture as a result of the decreased amount of time hospice staff spend with patients and families. Hospice has been absorbed by the medical and for profit communities while EOL doulas are again (as hospice was originally) outside of the medical model. Maybe EOL doulas will be able to avoid following in hospice’s footsteps. There are excellent medicare, certified hospices out there. Hospices that have patients and staff as their priority and focus——-you just have to search to find them. Doug, thanks for asking. Blessings to you in the work you are doing. Barbara
Barbara,
Once again, thank you for your insight. I am a Social Worker and my frustration is growing. All staff was recently notified by management of how much time we can spend with a patient. An MSW visit? 30 minutes! Perhaps for someone with dementia that would be okay, but patient/families need to talk and I will not tell them “I’m sorry, regulations prevent me from giving you more than 30 minutes to share your grief.” The regulations are strangling us. I did not get into hospice to be told by pencil pushers I can’t help my patients. My priority will always be patient and family. Oh, and I did raise my concern. I haven’t heard back yet.
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BK Books replied:
Cathy, I am so sorry your agency placed such unrealistic visit requirements on you. Why isn’t the social worker or nurse or CNA respected enough to be the judge of how long a visit is? Some visits can be complete in 30 minutes, some in an hour and as death gets closer two visits a day may be be necessary to alleviate the fear of a loved one dying. It is the professional that reacts to the dynamics of the daily situation not the administrative staffer in the office who should determine visit length. I used to say before I rang the doorbell “I seek to heal not hurt”. You never know what you will find on the other side of the front door. Hold true to your integrity, interact with the family and patients as long as you feel is necessary per visit. Blessings to you in the work you are doing. Barbara
Thank you Barbara for your dedication.
Your books helped me so much when my brother was dying in Palm Springs, CA.
I live in Australia now and several people including my psychiatric oncologist have asked about them. I’ve just raved and raved to anyone who is in the position I was in 2 years ago. I have ordered one set to be sent to my daughter in Los Angeles she will forward them on to me in Australia. ♥️♥️
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