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.
28 comments
Hello Barbara, Thank you for this insightful, compassionate, and wise blog post. I was a volunteer in a residential hospice in Canada for 17 years. I got involved shortly after the hospice opened and we all learned together how best to serve patients and their families. Everyone on staff, regardless of their degrees or status, worked side-by-side to provide care for patients and families. Those years were among the most meaningful in my life. After about a decade, I began to notice that the work was becoming more and more siloed – and nurses were having to spend more and more time on paperwork and reporting. Volunteers were spending more time in the kitchen and less time at the bedside. I had always been happy doing whatever duties were required, but increasingly I found I was being taken from the bedside where I was talking with a patient or family member, and asked to fetch something in the kitchen immediately. Still I persisted. But things kept deteriorating. I had been keeping a blog for many years about hospice volunteering, and finally I expressed my concerns there. I was called on the carpet and more or less forced to resigned. The loss to me was enormous – the community of staff and volunteers, the patients and their volunteers all disappeared from my life. Though the hospice was a non-profit, government funding had increased staff workloads and the requirement for more and more paperwork. I am still sad about the loss of hospice in my life but more for what was lost to our community. Thank you for expressing my own thoughts so beautifully.
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BK Books replied:
Hi Katherine, I was hoping Canada was different and not affected with the increase in regulations to the detriment of patient care. So sad! Blessings to you. Barbara
Yes, indeed your on point with your comments Barbara.
We are your cheerleaders and we desperately need change.
Love and blessings.
Barbara
Thank you for the frank discussion. I never thought you were turning your back on hospice, but I could feel your frustration. I’ve been volunteering since 2005, and I have seen the changes first-hand. My volunteering centered around helping patients cross things off their bucket lists. Sometimes, I was told I was pushing the boundaries, but I felt my work was for patients, not admin, and carried on. I am proud of my work and helping people find peace at EOL. Covid stopped everyone, but I plan to get back to volunteering as soon as they let me. I am also trained as an EOL Doula, so I could go in another direction if need be. But, soon, I hope to sit at a dying person’s bedside, hold a hand, offer a silent presence, and bring some comfort to the family.
Didn’t get to finish my comment!
1st of all, thank you very much for you blogs, I really appreciate them. Hospice gave me your “Gone From My Sight” booklet when they originally met with me 5/24/21, my wife passed 4 days later, 5/28/21.
In the beginning, I had an interesting conversation with Joey (or Joie?) when I called and ordered another of your booklets “My Friend I Care,” I periodically still look thru them both. You are a true Angel for the remaining spouses and family, you’ve helped me a lot.
Kindest Regards,
Carl Laughead
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BK Books replied:
Carl, thank you for your kind words. I’m glad my booklets are helpful in this life journey. Blessings! Barbara
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
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BK Books replied:
Hi Julie, so much has changed. It sounds like you will just be frustrated being a hospice volunteer when so many of your skills are not wanted. This is so sad and very much the hospice’s loss. I hope you find a place that will appreciate what you have in your tool box. Have you talked with other hospices in your area. Maybe another will be more receptive. My blessings are with you. Barbara
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