Dear Barbara, My first day as a hospice nurse I watched some videos in the office then sat in the conference room for 4 days. I oriented in the field for two weeks with the DON. After that I got my 18 patient caseload. Even with help from my team I am drowning and miserable.
We are in a rural area. My patients are a 30-120 minute commute. I have multiple patients declining and multiple patients with wounds, all of which would benefit from more frequent visits, which I physically can't do because I am already in overtime every week. My patients are suffering. When I relayed this to my supervisors, I was told that I would be expected to see even more, and needed to conduct admissions after seeing my patients, that everyone else is busy, etc.
I haven't charted on my patients from this week. I am on mandatory on call. I worked all night and all day. I am now being sent an hour away to do an admission. Only my second solo admission even though I've never had my first solo admission questions answered.
So, I have started to look for another job. I am crushed because I like my coworkers, patients, and this work. I am just crushed.
I’ve been getting too many stories of hospice care and practices like the one above; about hospice agencies that place emphasis on the number of visits per day and the number of patients per nurse, not on what is actually happening in the patient’s dying process. Emphasis that seems to put the patient and staff low on the list of priorities in running an agency.
I appreciate the challenge of balancing patients, visits, admissions and the bottom line of dollars brought in and dollars spent BUT I am seeing that taking care of staff and patients is often being sacrificed to that bottom line.
If we don’t take care of our staff, physically, emotionally, and energetically, the hospice will lose its grounding, its purpose, its reputation, as well as its Medicare standing (I hope). A hospice that does not take care of its staff cannot take care of its patients and their families in a manner consistent with the original hospice philosophy.
What is the hospice standard of care that may not be written into the Medicare regulations? Let's consider the number of patients per staff, how often and long are visits, what do actual visits consist of, and the role of primary care nursing.
I haven’t looked at the regulations recently. I do know there is a lot of micromanaging going on in them BUT my concern is what outside of regulations are common sense patient practices in the end of life arena? As Fareed Zakaria would say, “Here is my take.”
Patient load: Depends on driving distance between patients. If all patients are in the same nursing home then we can see more than if they are in a rural community with driving distance between visits 30 or more minutes. I think it also depends on closeness to death. If a referral is months before death or dementia is the main diagnosis we can see more patients than if we have late referrals and the patient is days, even a week or so from death. Average patient load: 15 patients. If everyone “crashes” at once it is the agency’s responsibility to assist its primacy care nurse with additional help so she can spend the appropriate time with each family and not have it be her sacrifice in time to provide the good care necessary. This size patient load makes for about five visits a day, two in the morning and three in the afternoon. That allows for driving and charting time as well as a drive thru lunch.
How often to visit: If it is estimated to be months before death, visit weekly. A patient is not appropriate for hospice care if you only need to see them once a month or even every other week. If you consider it weeks from death then see them two or three times a week depending on how the patient and family are coping. If death is considered within days you visit daily if not twice a day (first thing in the morning and last thing in late afternoon). If dying in hours then the nurse stays as long as is necessary to guide, educate, and support the family. I appreciate that now the nurse cannot stay as we used to stay (until death occurred) but stay long enough to get the family supported. This is where having end of life doulas as part of the working team is good care. The primary care nurse calls in the end of life doula to stay and guide the family through the death and until the body has been taken by the funeral home.
How long is a visit: Of course length of visit will depend on the stability of the patient and family but average visits would be 60 to 90 minutes. If less, you probably aren’t giving that family the guidance and education they need. Sometimes you will need to stay longer to guide and support. If your visits are consistently under an hour I would ask why. If consistently over 2 hours I, again, would ask why. Remember, teaching is 90% of end of life work. You can’t teach comprehensively in 15 minutes.
What does a visit look like: An in-home visit is assessing the patient physically, their disease progression and, if they are alert, their emotional status. If alert, it is visiting with them, assessing, asking for questions, “feeling them out” for fears and distress. Then there is time spent with the caregiver (often over coffee in the kitchen) for a look at their physical and emotional stability and their assessment of what is happening with the patient. This is good education time as well. This visit is not done with a laptop and note taking (That is done in the car between visits). This visit always ends with “Do you understand what we have just talked about?” “Do you have questions for me that we haven’t addressed?” “You know you can call me anytime, day or night. I am as close as the phone.”
Primary care nursing: Families and patients can not bond and feel secure in the dying process if they have a different nurse, social worker and chaplain every visit. Primary care is vital in establishing a relationship and good, comprehensive care.
With more and more patients in nursing homes and with dementia as their primary diagnosis these basic guidelines do not apply. Maybe I’ll write a blog focusing on how to care for a patient and their families in nursing homes.
This blog is just an old time hospice nurse’s opinion on how to provide hospice care. Just an old nurse who learned how to provide end of life care during a time when the bottom line was how best to care for the patient and family, not how much money the agency made.
Something More... about If We Don't Take Care Of Our Hospice Staff...
We have support resources for professional caregivers in the booklet You Need Care Too and the DVD kit Care For The Caregiver. As National Hospice Month approaches giving your staff the booklet and watching the film together as a team would be a wonderful gift. You may want to look at the Caregiver Bundle that includes these two resources.
29 comments
Carolyn Schaum
I really want to circle in red the comment about not charting on your computer while assessing patients and send to these young pup administrators! When I’m with a patient, I’m looking at them, not my computer! Bless you for all your work and shared knowledge throughout the years!
———
BK Books replied:
Thanks Carolyn! Eye contact is vital in developing trust and how can you
support, guide and teach without trust? Not very well.
Blessings to you in the work you are doing. Barbara
I really want to circle in red the comment about not charting on your computer while assessing patients and send to these young pup administrators! When I’m with a patient, I’m looking at them, not my computer! Bless you for all your work and shared knowledge throughout the years!
———
BK Books replied:
Thanks Carolyn! Eye contact is vital in developing trust and how can you
support, guide and teach without trust? Not very well.
Blessings to you in the work you are doing. Barbara
barbara karnes
Hi Carrie, I will do a blog about CNAs. You are vital to end of life care and often the closest person to the patient the team has. Blessings to you in the important work you are doing. Barbara
Hi Carrie, I will do a blog about CNAs. You are vital to end of life care and often the closest person to the patient the team has. Blessings to you in the important work you are doing. Barbara
barbara karnes
Hi Kelly, thank you for sharing your work experience. I am so glad you took care of yourself and found a hospice that is concerned about its staff and patients. They are out there. Blessings! Barbara
Hi Kelly, thank you for sharing your work experience. I am so glad you took care of yourself and found a hospice that is concerned about its staff and patients. They are out there. Blessings! Barbara
barbara karnes
Hi Joanna, good for you for asking for what you want. If we don’t ask we miss the opportunity of getting it. Blessings! Barbara
Hi Joanna, good for you for asking for what you want. If we don’t ask we miss the opportunity of getting it. Blessings! Barbara
barbara karnes
Hi Carrie, End of Life Doulas or EOL Workers as the name is evolving into, are trained, non medical (although I am hearing of more and more nurses and social workers becoming EOL Workers) people who support, guide and educate families and patients through the life ending experience. Actually what I see of the work it is what I, as a hospice nurse, did in the ’80 and 90’s before medicare hospice and before for profits became a dominating part of the landscape. Use our friend Google to explore further. NEDA is one of several organizations. There are many courses, training programs and classes addressing this career choice. The biggest challenge is getting reimbursed. Yes, some hospice are hiring (which I think would be a perfect fit). Blessings! Barbara
Hi Carrie, End of Life Doulas or EOL Workers as the name is evolving into, are trained, non medical (although I am hearing of more and more nurses and social workers becoming EOL Workers) people who support, guide and educate families and patients through the life ending experience. Actually what I see of the work it is what I, as a hospice nurse, did in the ’80 and 90’s before medicare hospice and before for profits became a dominating part of the landscape. Use our friend Google to explore further. NEDA is one of several organizations. There are many courses, training programs and classes addressing this career choice. The biggest challenge is getting reimbursed. Yes, some hospice are hiring (which I think would be a perfect fit). Blessings! Barbara
barbara karnes
Hi Mari, “hospice-lite” such a perfect description of what hospice care seems to be evolving into.
Thank you for sharing. Blessings! Barbara
Hi Mari, “hospice-lite” such a perfect description of what hospice care seems to be evolving into.
Thank you for sharing. Blessings! Barbara
barbara karnes
Hi Lois, thank you for sharing. Yes, so many changes over the years, and not necessarily for the good. We “old timers” have to hang in there and be a voice crying in the darkness. We, who know the care, need to defend it and try to keep it. Blessings! Barbara
Hi Lois, thank you for sharing. Yes, so many changes over the years, and not necessarily for the good. We “old timers” have to hang in there and be a voice crying in the darkness. We, who know the care, need to defend it and try to keep it. Blessings! Barbara
barbara karnes
Hi Linda, I know it is hard for us “old timers” to see the changes that have occurred in hospice. There was a time when the patient and their families were the major concern of an agency. Unfortunately care has become so micromanaged by regulations and streamlined by the dollar that in some situations end of life care is not recognizable. Blessings to you! Barbara
Hi Linda, I know it is hard for us “old timers” to see the changes that have occurred in hospice. There was a time when the patient and their families were the major concern of an agency. Unfortunately care has become so micromanaged by regulations and streamlined by the dollar that in some situations end of life care is not recognizable. Blessings to you! Barbara
barbara karnes
Hi Rhonda, how about you set up a support system among yourselves (social workers and chaplains) like the one you were advised to create for the other staff members. Blessings! Barbara
Hi Rhonda, how about you set up a support system among yourselves (social workers and chaplains) like the one you were advised to create for the other staff members. Blessings! Barbara
Carrie Childers
You need to make a blog on hospice care side from aides point of view because we see the patients more then the nurse’s do. We burnout just as fast. I’ve been doing hospice care for the last 5yrs. It’s honestly the most draining job I ever had. But I do love my patients as family.
You need to make a blog on hospice care side from aides point of view because we see the patients more then the nurse’s do. We burnout just as fast. I’ve been doing hospice care for the last 5yrs. It’s honestly the most draining job I ever had. But I do love my patients as family.
barbara karnes
Yvonne, I am so sorry to hear of the struggles you are having. Covid has added a huge burden to our lives. As healthcare workers it would be beneficial if all employers were more empathetic and supportive. Make taking care of yourself a top priority (set limits, honor your beliefs and values, find time to laugh and time to rest—among much more, (a whole another blog). It appears employers are not looking after their employees so employees must take care of themselves. Working in end of life has taught us how short and fragile life is. Take care of yourself as you take care of others. Blessings! Barbara
Yvonne, I am so sorry to hear of the struggles you are having. Covid has added a huge burden to our lives. As healthcare workers it would be beneficial if all employers were more empathetic and supportive. Make taking care of yourself a top priority (set limits, honor your beliefs and values, find time to laugh and time to rest—among much more, (a whole another blog). It appears employers are not looking after their employees so employees must take care of themselves. Working in end of life has taught us how short and fragile life is. Take care of yourself as you take care of others. Blessings! Barbara
barbara karnes
Hi Karen, what a wonderful, and much needed, orientation you started for your hospice. Saddens me to hear they didn’t follow thru with it after you left. If we train and treat our staff well everyone benefits— the workers, the patient and their families and the agency. Blessings! Barbara
Hi Karen, what a wonderful, and much needed, orientation you started for your hospice. Saddens me to hear they didn’t follow thru with it after you left. If we train and treat our staff well everyone benefits— the workers, the patient and their families and the agency. Blessings! Barbara
barbara karnes
Hi Joni, being an end of life doula is a great idea. The movement is now what hospice was in the 1980’s. It is like the end of life movement has come full circle, people looking outside of the medical model to find end of life care . Hospice has moved into the big business category for far too many agencies—not all, but even one is too many. Blessings! Barbara
Hi Joni, being an end of life doula is a great idea. The movement is now what hospice was in the 1980’s. It is like the end of life movement has come full circle, people looking outside of the medical model to find end of life care . Hospice has moved into the big business category for far too many agencies—not all, but even one is too many. Blessings! Barbara
barbara karnes
Hi Laura, sorry to hear of your friend’s hospice experience, particularly because her previous contact with them had been a positive one. Covid could have had some influence. I hope your friend contacts the hospice and talks with the administrator about her unfulfilling experience. Can’t fix it if don’t know about it. Blessings to both of you. Barbara
Hi Laura, sorry to hear of your friend’s hospice experience, particularly because her previous contact with them had been a positive one. Covid could have had some influence. I hope your friend contacts the hospice and talks with the administrator about her unfulfilling experience. Can’t fix it if don’t know about it. Blessings to both of you. Barbara
barbara
Hi Anne, yes, I’ve know Hospice of the Valley for years and they do good work. They have been around for many years. Thank you for speaking up for them. Blessings! Barbara
Hi Anne, yes, I’ve know Hospice of the Valley for years and they do good work. They have been around for many years. Thank you for speaking up for them. Blessings! Barbara
Kelly
This story really resonated with me. This was exactly my story with a large hospice that I was with for about a year and a half. I was trained with videos and then in the field with another RN case manager, then let go on my own with a caseload of 18-20 patients. My highest caseload topped out at 28 patients. I was drowning….and no one cared. I had a very large coverage area and would often have to drive 1 to 1.5 hours between patient visits, limiting the number of patients I could see each day. I was constantly in overtime, trying to complete my work, and getting reprimanded for going into overtime. I had no help. We would be told in nurses meetings, “If you ever need help, just call the office and let us know. We have the float nurses that can help.” Yet 99% of the time when I would call, begging for help, I was told there was no help. The float nurses were too busy with admits and other things. There were numerous times I would have several patients crashing at once that needed immediate attention, or a patient death that needed a post-mortem visit, plus all the routine weekly visits that needed to be done—and I was told I had to just figure it out and do the best I could. That broke me. My patients and families were suffering and not getting the care and attention they deserved. I was miserable. Most nights I would drive home in tears. The bottom line was money and how many visits we could squeeze into a day. It was not about the care of patients/families or staff. I stuck it out as long as I could, hoping it would get better. I left that hospice, and took a few months off of work to regroup and take care of myself.
Today, I am so fortunate to work for a small community hospice that works the way hospice is supposed to work. We are non-profit and not attached to any large health system. We have a lower census than the larger hospices, and our RNCM caseloads top out at 10 patients each. Our nurses actually have the time to spend with each patient and their family to be able to provide them proper, thorough, meaningful care. We care for our staff and value their mental health over the bottom line. We’re like a family. I love it here and am so grateful to be able to be part of a team that cares for our patients and families and are dedicated to providing them the best care possible.
This story really resonated with me. This was exactly my story with a large hospice that I was with for about a year and a half. I was trained with videos and then in the field with another RN case manager, then let go on my own with a caseload of 18-20 patients. My highest caseload topped out at 28 patients. I was drowning….and no one cared. I had a very large coverage area and would often have to drive 1 to 1.5 hours between patient visits, limiting the number of patients I could see each day. I was constantly in overtime, trying to complete my work, and getting reprimanded for going into overtime. I had no help. We would be told in nurses meetings, “If you ever need help, just call the office and let us know. We have the float nurses that can help.” Yet 99% of the time when I would call, begging for help, I was told there was no help. The float nurses were too busy with admits and other things. There were numerous times I would have several patients crashing at once that needed immediate attention, or a patient death that needed a post-mortem visit, plus all the routine weekly visits that needed to be done—and I was told I had to just figure it out and do the best I could. That broke me. My patients and families were suffering and not getting the care and attention they deserved. I was miserable. Most nights I would drive home in tears. The bottom line was money and how many visits we could squeeze into a day. It was not about the care of patients/families or staff. I stuck it out as long as I could, hoping it would get better. I left that hospice, and took a few months off of work to regroup and take care of myself.
Today, I am so fortunate to work for a small community hospice that works the way hospice is supposed to work. We are non-profit and not attached to any large health system. We have a lower census than the larger hospices, and our RNCM caseloads top out at 10 patients each. Our nurses actually have the time to spend with each patient and their family to be able to provide them proper, thorough, meaningful care. We care for our staff and value their mental health over the bottom line. We’re like a family. I love it here and am so grateful to be able to be part of a team that cares for our patients and families and are dedicated to providing them the best care possible.
joanna
This is great info. i too started as a Prn nurse quickly realizing hospice wasnt all i hoped it should be
with increased pt loads
i put in my resignation. however i have a wonderful DOO and team so we talked and i am as PRN as i can be they actually let me spend the time a pt needs with no questions asked because they know i am not rushing i might only see one pt or two here or there and i can give all the time they or family need. it keeps me happy and its what i went into Hospice for and most of all the pt and families benefit from having a nurse with no need to rush. not all can do this i know but i am so glad i can.
This is great info. i too started as a Prn nurse quickly realizing hospice wasnt all i hoped it should be
with increased pt loads
i put in my resignation. however i have a wonderful DOO and team so we talked and i am as PRN as i can be they actually let me spend the time a pt needs with no questions asked because they know i am not rushing i might only see one pt or two here or there and i can give all the time they or family need. it keeps me happy and its what i went into Hospice for and most of all the pt and families benefit from having a nurse with no need to rush. not all can do this i know but i am so glad i can.
Carrie Koch
This is fantastic! I’m curious…what is a “Death Doula” ? Are there requirements? Something a volunteer can be trained to do? Paid position? Please fill me in, this might be something we can use in our rural community to help out our small staff!
This is fantastic! I’m curious…what is a “Death Doula” ? Are there requirements? Something a volunteer can be trained to do? Paid position? Please fill me in, this might be something we can use in our rural community to help out our small staff!
Mari
As a hospice social worker you have hit the nail on the head. It is beginning to feel less and less like the unique , loving and compassionate specialty of caring for others that I entered over 10 years ago. It is all about the numbers!!!
Medicare needs to revamp their payments and policies so that organizations can survive without being the new product called, “ hospice -lite”.
As a hospice social worker you have hit the nail on the head. It is beginning to feel less and less like the unique , loving and compassionate specialty of caring for others that I entered over 10 years ago. It is all about the numbers!!!
Medicare needs to revamp their payments and policies so that organizations can survive without being the new product called, “ hospice -lite”.
Randall Foster
Thank you for advocating that quality hospice care is magnified when all team members gets adequate support and care!
Thank you for advocating that quality hospice care is magnified when all team members gets adequate support and care!
Lois
I’ve doe hospice for 20 years now as social work and agree with everything your saying . We’ve got through multiple Directors,managers,and supervisors. With each change we lose a little more, demands are very high on nurses, aides, social work and chaplains due to increased coverage area and dual roles for both in home hospiceadnow hospice home. Can not keep staff and orientation is a joke.
I’ve doe hospice for 20 years now as social work and agree with everything your saying . We’ve got through multiple Directors,managers,and supervisors. With each change we lose a little more, demands are very high on nurses, aides, social work and chaplains due to increased coverage area and dual roles for both in home hospiceadnow hospice home. Can not keep staff and orientation is a joke.
Linda Parente
I was a hospice nurse for 17 years. Both home are and the last 9 at a free standing inpatient center. I believe this is what I was meant to do. In the end I was overwhelmed by the overall interest no longer being the patient but the dollar. It broke my heart💔
I was a hospice nurse for 17 years. Both home are and the last 9 at a free standing inpatient center. I believe this is what I was meant to do. In the end I was overwhelmed by the overall interest no longer being the patient but the dollar. It broke my heart💔
lori E. pierce
wee need this, I need this
wee need this, I need this
Rhonda Millarr
Great information. Most Hospices don’t support their staff. In my agency when the Pandemic started the Social workers and Chaplains were given a list of team members that we were to contact and offer support to make sure they were coping ok with all that was going on in the world. But who was going to check on us and support us? No one. It’s really frustrating.
Great information. Most Hospices don’t support their staff. In my agency when the Pandemic started the Social workers and Chaplains were given a list of team members that we were to contact and offer support to make sure they were coping ok with all that was going on in the world. But who was going to check on us and support us? No one. It’s really frustrating.
Yvonne Herndon
I am a hospice social worker for a productivity model driven hospice. I am so very exhausted. I love my patients, family’s and nurses I work closely with. The micromanaging is running us in the ground. I do not know how much longer I can hang on. In the midst of Covid, I am reluctant to change jobs. I feel so torn. I have zero life balance…I just want to climb in bed when I am not working. The RN I work closest with experiences the same. :-(
I am a hospice social worker for a productivity model driven hospice. I am so very exhausted. I love my patients, family’s and nurses I work closely with. The micromanaging is running us in the ground. I do not know how much longer I can hang on. In the midst of Covid, I am reluctant to change jobs. I feel so torn. I have zero life balance…I just want to climb in bed when I am not working. The RN I work closest with experiences the same. :-(
Karen Martin
I am so sad to see this. At the end of my 25 year hospice career, I developed a six month program which was monitored daily and gradually gave more responsibility, etc. The new nurses just loved it! They would come back to the office with questions, computer and otherwise. I loved to nuture them, help them understand the care needed to be a hospice nurse, and walk the journey with them. But alas, when I retired they did not fill this position. When I speak to the nurses still working, the new nurses are thrown into the lion’s den without the experience they need and of course, they burn out quickly. How I wish the supervisors who decide all of this would see if they were nurtured and given a proper orientation, they would hopefully have less burnout and more joy in the journey. Sometimes, I feel like starting an online orientation program for hospices, but the computer work and other mandates are so different, it would just be too hard to do.
All of you, please reach out to those seasoned nurses as much as you can. Because if you start in hospice, hopefully you have the right heart. Blessings to all of you!
I am so sad to see this. At the end of my 25 year hospice career, I developed a six month program which was monitored daily and gradually gave more responsibility, etc. The new nurses just loved it! They would come back to the office with questions, computer and otherwise. I loved to nuture them, help them understand the care needed to be a hospice nurse, and walk the journey with them. But alas, when I retired they did not fill this position. When I speak to the nurses still working, the new nurses are thrown into the lion’s den without the experience they need and of course, they burn out quickly. How I wish the supervisors who decide all of this would see if they were nurtured and given a proper orientation, they would hopefully have less burnout and more joy in the journey. Sometimes, I feel like starting an online orientation program for hospices, but the computer work and other mandates are so different, it would just be too hard to do.
All of you, please reach out to those seasoned nurses as much as you can. Because if you start in hospice, hopefully you have the right heart. Blessings to all of you!
Joni
I completely agree with your assessment. I was only a hospice nurse for 2.5 years before I had to stop for my own health. I am considering becoming a doula so that I can meet the needs of hospice patients in a way that serves them and their families. I wish that hospices would consider adding doulas for support. Thank you for addressing this!
I completely agree with your assessment. I was only a hospice nurse for 2.5 years before I had to stop for my own health. I am considering becoming a doula so that I can meet the needs of hospice patients in a way that serves them and their families. I wish that hospices would consider adding doulas for support. Thank you for addressing this!
Laura Jenkins
Thank you for this. I was recently grieved for my friend, the caregiver for her beloved brother, who felt completely abandoned by their hospice nurse in his final hours. It was a frightening and traumatic experience for her, adding immensely to her grief. Especially disappointing because the same hospice had provided much more attentive care for the end of her mother’s life a decade before. I do not blame the nurse. It’s clear the hospice’s priorities have changed. And this was a nonprofit hospice. I can’t imagine their experience if they had selected a for-profit hospice.
Thank you for this. I was recently grieved for my friend, the caregiver for her beloved brother, who felt completely abandoned by their hospice nurse in his final hours. It was a frightening and traumatic experience for her, adding immensely to her grief. Especially disappointing because the same hospice had provided much more attentive care for the end of her mother’s life a decade before. I do not blame the nurse. It’s clear the hospice’s priorities have changed. And this was a nonprofit hospice. I can’t imagine their experience if they had selected a for-profit hospice.
Anne
I can’t say enough about my Hospice Team here in AZ – Hospice of the Valley. My Team was with us when my husband was dying. The Team continued to serve us in those last days. Our nurse did check in daily and was with me on the day my Jim died. She stayed with us until Jim was taken away. I can’t say enough about HOV. For my family they served us well. Jim passed in 2012 and I am still in contact with my grief counselor. She helped me through those first 13 months to survive his death. We were married for forty years.
I can’t say enough about my Hospice Team here in AZ – Hospice of the Valley. My Team was with us when my husband was dying. The Team continued to serve us in those last days. Our nurse did check in daily and was with me on the day my Jim died. She stayed with us until Jim was taken away. I can’t say enough about HOV. For my family they served us well. Jim passed in 2012 and I am still in contact with my grief counselor. She helped me through those first 13 months to survive his death. We were married for forty years.