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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Bravo for your analogy of the cup being a cup. I was a hospice physician but got out of active practice about 10 years ago due to that cup effect. I was spending 3/5 of my time doing the paperwork needed by regulations, and only 2/5 with my patients. It made my health nosedive. Now I run an all-volunteer hospice so we avoid the onerous burden of Medicare regulations. However, we cannot provide the scope of services that a funded hospice provides. I hope that hospice providers push back against the mounting burden of regulatory paperwork so that we may return to taking care of people!
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BK Books replied:
Mariluz, good for you for thinking “outside the box” to provide good patient centered care. You are the second all volunteer hospice I have encountered today—no regulations but no money so need community support. Are we coming full circle? Blessings to you and your hospice. Barbara
Barbara, I hear what you’re saying! This is a healthcare wide problem. Having just gotten out of the hospital, I can attest at how thoroughly the bureaucracy has taken hold of medicine. In my opinion, the concept of evidence based medicine is a joke, and there doesn’t seem to be continuity of care any more. I was discharged from the hospital on Monday. Doesn’t sound like a big deal, but there’s the rest of the story. After 5 hours in the ED parking lot, they move your care to the parking deck. You get admitted? As a family med patient your taken to another hospital 20+ min away. I was there for pulmonology issues, but was treated by family med and nurses that are NOT lung providers. They decided that I could go home, as there was nothing more than they could do for me. I signed discharge papers at 7pm. Their taxi was out of town and wouldn’t be there for at least another two hours. They got there after midnight! Still, I was taken back to the hospital where I had originally gone to so that I could recover my car. When I gave the young man my key on Sat., the last I said to him was, do not lock the car, and do NOT roll the window down as it may not go back up! I get to my car, which was found on the TOP deck which has NO ceiling! My driver’s window was halfway down and a plastic bag half taped to the car and window. The drivers area was SOAKED.
Who ever decided that that was a good or proper idea for patient care doesn’t need to be in their position. There is a TREMEMDOUS amount of work created for the doctor’s, nurses, and other personnel. Those problematic regulations greatly effect patient care. As it turned out, I’ve been having problems with what I assume is orthostatic hypotension and this morning, when Meals on Wheels brought my lunch, they left, I shut the door, turned to go to the kitchen, my vision went to something akin to kaleidoscope vision and suddenly, I was in the floor. I hit HARD. I’ve been trying to contact my pulmonologist for about 6 wks through every avenue I can think of. I’m not hearing from at all. He’s a great guy, a good doctor, but very, very busy. Much of his time is tied up by red tape and paper work. This won’t get better if we don’t as patients and caregivers continue to put pressure on the system to make appropriate changes. You can’t fix what you don’t know about!
Last fact…? I didn’t get home till 1:15am! I live 10 mins from the hospital where my car was…
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BK Books replied:
Oh Shelly, what a mess! I am so sorry. Hope you are feeling better in spite of the challenges you face. I’m holding you in my thoughts. Blessings! Barbara
Barbara, I’m with you on all these points. In addition, because I think it is a related issue, I think more education about end-of-life issues is necessary. More education in the community, more in schools of medicine and nursing, more in doctors’ offices and clinics, more in SNF’s and assisted living facilities, more more more! Here we are 40+ years later, and improvements are happening much too slowly. I honor all hospice staff for all they do, but many times hospices, because of short staffing and other variables, hire fresh-out-of school RN’s, for example. I believe hospice work is similar to a calling to ministry; thus, is often done more deeply and compassionately by more experienced professionals. I had been an RN for 25 years before I entered hospice nursing, and I had much to learn. That being said, I was highly internally motivated to be the best hospice nurse in the U.S. Unsure if I attained that lofty goal, but it was always foremost on my mind.
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BK Books replied:
Hi Paula, I so agree- educate, educate, educate. Taking care of someone at end of life is different than taking care of someone who is going to get better BUT most people (and some healthcare professionals) don’t know that unless we teach them the difference. Education is 90% of end of life work. Blessings! Barbara
Well said, Barbara! I am an “old” hospice nurse who has loved my time with hospice and my patients. Over the last few years, I’ve noticed hospice becoming more of a numbers game and nurses are now being spoken to about long visits with patients and, more importantly, families. Those “long” visits are why I went into hospice and those teaching moments are what fill my cup back up after it’s drained with charting and unnecessary meetings for compliance. So….I will keep trudging along, rebelling against productivity rates, and continue to deliver compassionate care and make connections with my patients and families for as long as I can. At least I know I’m giving the best care I can without compromising my passion for the “real” hospice. Thank you for paving the way for all of us, Barbara. You’re only frustrated because you love hospice and that philosophy and you see it changing and not for the better, unfortunately. Take care and keep speaking the word of hospice philosophy!
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BK Books replied:
Bah, thank you for the passion in the work you do. Please keep working your way. We need you and your example to keep the hospice philosophy in the work we do. Blessings! Barbara
your love, caring and compassion shows and shines through!
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