Dear Barbara, “I am a hospice nurse. I noticed that after 5 years of working in hospice I felt like I ran into a wall and needed a break. I took 6 months off and have been back to work for 1 month.
I feel I am a well trained and good hospice nurse, but coming back into hospice does not feel as happy and joyful as it did the first time. I am thinking positive and trusting that God can still use me in hospice but am wondering what has happened to cause this change in my sense of fulfillment? “ Nurse G.
Hi Nurse G,
I think hospice care and the role nurses play has changed considerably and wonder if that is why you are not feeling the fulfillment you once did. Over the years Hospice has gone from being outside of the medical model to being absorbed into it. Since dying is not a medical event but a social, communal one, we, who know the difference, are responding. Now care often consists of "treating" the physical body/disease with more and more drugs and procedures and calling it hospice care. Medicare, with its micromanagement, has taken precious time away from patient/family interaction and allotted it to non-patient duties and fear for reimbursement. No wonder it isn’t fun anymore.
Hospice's goal used to be to have a hospice nurse with the patient and family at the moment of death, to support and guide. That closeness rarely happens now. Even Hospice Houses are experiencing the effect of unrealistic protocols and regulations.
Your email struck a raw nerve with me. I have such feelings about how distorted hospice care has become. Let me know if this makes any sense to you or if I am just an old hospice nurse who remembers the past and has not adjusted to the present.
Barbara
Nurse G. wrote again: “Thank you for writing back and sharing your feelings. I really enjoyed reading what you had to say. It does make sense to me. The focus of my job is making sure the paperwork is done correctly and turned in on time. I think that is one aspect that just keeps getting more and more time consuming. When I have an admission I spend 2 hours with the family in their home. The first 1.5 hours of that time is filling out papers they need to sign and discuss. I get home or to the office and do 5 more hours of paperwork. It takes the whole day, and during that time I was spending time with the patient for 20-30minutes. I get very tired by the end of each day, not related to patient care, but worried I am not going to get the admission packet done in time and worried I may have made a mistake with the 50 or more (I should count for fun) papers involved.
The other hospice I worked for had a very dedicated doctor that would see the patients in their homes and offered guidance and support to the nurses. The doctor here does not see the patients in their homes and rarely answers his phone. It's an adjustment, not having the doctor’s support like before. We are also required every other week to have a team meeting, which can be enjoyable, but it lasts for 5-6 hours and you feel so saturated after hearing about a hundred patients issues and suffering that it can end up leaving you depressed and anxious.
I wish there was another way for hospice to be reimbursed that did not involve the nurses spending 75% of their time doing paperwork & meetings.
I definitely love the time for guidance and support that I offer the families and patients!! That brings me a lot of purpose in my life!”
Thanks so much, Nurse G!
Something more... about A Hospice Nurse's Frustration
Hospice workers are generally Type A personalities who care deeply about their patients. I encourage hospice agencies to show how much they value their staff by setting aside a weekly social hour (or two), by having yearly retreats, etc. I have other tools that will combat compassion fatigue in staff in my 25 minute dvd Care for the Caregiver. The team should watch the video together every six months and strengthen the tools that have been working well for everyone.
5 comments
Merilynne Rush
Thank you for sharing so deeply about this very tender subject. I wholeheartedly agree with you. As a hospice nurse on-call off hours, some of the most precious caring time I had with patients and families was on the phone or being with them after the death occurred, when I had a little more time with them.
There is a new profession of caregivers who are non-medical and have time to spend with patients and families at the bedside. They are end-of-life doulas and Barbara wrote a very beautiful piece about them that can be found here http://www.nedalliance.org/learn-more-about-eolds.html. EOL doulas work independently in the community and contract directly with the individual or family, or they work as volunteers with a hospice organization. They become involved with the family as early as initial diagnosis and their care extends into bereavement. They do not replace anyone on the hospice team but rather add to it. They generally have more training, and can provide more services, than hospice volunteers. They help greatly when a family is in need of more care than hospice personnel can provide in our current medical care delivery system.
Bless all you hospice care providers who are working so hard to bring peace and caring to so many.
Thank you for sharing so deeply about this very tender subject. I wholeheartedly agree with you. As a hospice nurse on-call off hours, some of the most precious caring time I had with patients and families was on the phone or being with them after the death occurred, when I had a little more time with them.
There is a new profession of caregivers who are non-medical and have time to spend with patients and families at the bedside. They are end-of-life doulas and Barbara wrote a very beautiful piece about them that can be found here http://www.nedalliance.org/learn-more-about-eolds.html. EOL doulas work independently in the community and contract directly with the individual or family, or they work as volunteers with a hospice organization. They become involved with the family as early as initial diagnosis and their care extends into bereavement. They do not replace anyone on the hospice team but rather add to it. They generally have more training, and can provide more services, than hospice volunteers. They help greatly when a family is in need of more care than hospice personnel can provide in our current medical care delivery system.
Bless all you hospice care providers who are working so hard to bring peace and caring to so many.
Joanne Ciampi
I purchased 20 of your books “You Need Care Too” and gave them to new volunteers. I read the book and think it would be great for all staff to read. Thank you for taking the time to share your experiences and expertise. It is greatly appreciated.
I purchased 20 of your books “You Need Care Too” and gave them to new volunteers. I read the book and think it would be great for all staff to read. Thank you for taking the time to share your experiences and expertise. It is greatly appreciated.
Renee Ives
I am not a hospice nurse, but hospice is near and dear to my heart. I have noticed what you speak of in the dichotomy of the 2 major hospice companies we have worked with here at Assisted Living. One company operates like what you describe. Paperwork, clinical, not seeing the whole patient. The other company is the exact opposite. They spend time with the patient and family. I am sure that both companies have the same reimbursement challenges. As an outsider looking in, it appears to me that the first company has lost it’s hospice mission and purpose. Maybe you are experiencing being at the wrong company? Best wishes to you. We need competent, caring nurses like you.
I am not a hospice nurse, but hospice is near and dear to my heart. I have noticed what you speak of in the dichotomy of the 2 major hospice companies we have worked with here at Assisted Living. One company operates like what you describe. Paperwork, clinical, not seeing the whole patient. The other company is the exact opposite. They spend time with the patient and family. I am sure that both companies have the same reimbursement challenges. As an outsider looking in, it appears to me that the first company has lost it’s hospice mission and purpose. Maybe you are experiencing being at the wrong company? Best wishes to you. We need competent, caring nurses like you.
Kay
This sounds so very familiar and saddens me greatly! I was a hospice chaplain for 14 years in a small community hospice, we were then acquired by a large hospital system. The pt contact became less and less and the charting endless! The love for my job slowly diminished bc of it but my passion still remains to support the dying. Hoping to continue someday!
This sounds so very familiar and saddens me greatly! I was a hospice chaplain for 14 years in a small community hospice, we were then acquired by a large hospital system. The pt contact became less and less and the charting endless! The love for my job slowly diminished bc of it but my passion still remains to support the dying. Hoping to continue someday!
Karen King
I trained to be a Hospice vigil companion, to be with families and patients at the end. I was told I can only spend 4 hours per visit with the patient only once a week. That is just useless. I was thinking of training and certifying to be a death doula, but that service is only available for the wealthy who can afford the high fees. I’m frustrated that I want to do vigil work but there’s no avenue available. I’m not looking for you to provide the answer, Barbara, just adding my 2 cents to the discussion. It’s really a sad thing. I feel for the nurse who first wrote the letter. Our health care in general has become more about paperwork than caring for the patient.
I trained to be a Hospice vigil companion, to be with families and patients at the end. I was told I can only spend 4 hours per visit with the patient only once a week. That is just useless. I was thinking of training and certifying to be a death doula, but that service is only available for the wealthy who can afford the high fees. I’m frustrated that I want to do vigil work but there’s no avenue available. I’m not looking for you to provide the answer, Barbara, just adding my 2 cents to the discussion. It’s really a sad thing. I feel for the nurse who first wrote the letter. Our health care in general has become more about paperwork than caring for the patient.