It used to be that end of life workers came to the career because something deep within said, “this is the work for you.” Today, with hospice being a big business rather than a heart-driven movement, employees often enter the field because it is a job. I’m not saying this is ALL hospice employees. I am saying that as hospice has grown, now having a larger census, the employment arena has expanded and is now taking employees directly from the medical model. For many, hospice is a job, whereas it used to be an avocation.
Taking care of someone who is at the end of life is different from taking care of someone who is going to get better, BUT most people don’t know this — including most healthcare professionals. Because of the difference in care for end of life, it is important that healthcare workers have special training in end of life care before they begin caring for patients. You wouldn’t send a nurse into ICU without training in its specialities. You shouldn’t send a nurse, a social worker, or a chaplain to care for terminally ill people and their families without specialty training, either.
What do I think special end of life training consists of?
Begin orientation with “Why are you here? What do you know about end of life work? What is your personal experience with dying, death and grief?” (I know some would consider this too personal. Tell them they don’t have to share but to give it serious thought.) Our personal experiences and our own grief will affect how long we can stay in this work. Also, offer some ideas for self care and stress the importance of putting their own oxygen mask on first.
Because end of life care is different from “getting better” care, teach the signs of approaching death, the dynamics of dying, death, and grief. Teach what to look for that says a person has entered the dying process. Include training on how to assess if death is within months, weeks, days, or hours of death.
Following training on what to LOOK for, teach what to DO now that you have determined the dying process has begun. Teach what to say and not say in offering support and guidance. Teach nutrition, symptom and pain management, listening, and support skills.
Obviously, by educating staff on how people die and what to do while it is happening, they will provide better care for patients and be more assured in the care they provide.
I know you are thinking, “what about medicare regs, documentation, and compliance?” Yes, you teach those aspects of the job, but you teach the end of life specialty and the kind of care to be given first.
Because of what I am hearing “on the street,” I’m going to add that just shadowing another nurse, home health aid, social worker, or chaplain for a couple of days, in some cases hours, is not orientation. Orientation provides the knowledge and education first so that they will KNOW what they are seeing when shadowing.
A strong orientation program can set the standard of quality for care given.
Something More… about Restoring Heart to Hospice: Crafting a Compassionate Orientation
Here are three resources that you may consider to help structure your agency orientation:
This is How People Die DVD with a downloadable pdf This is How People Die offers my in depth workshop on the dying process. In this three part, award winning DVD, I address the normal dying process from the months before to the moment of death.
The Final Act of Living: Reflections of a Long-Time Hospice Nurse is an end of life book; a resource that reads like a novel, yet has the content of a textbook.
The End of Life Guideline Series Bundle This series prepares its readers for the natural, normal process of dying and grief. It is a compilation of five of our most popular hospice and palliative care books. These resources meet Medicare requirements for consistent family education and have been shown to significantly improve CAHPS scores and family survey results.
7 comments
Pamela
Hi my husband has been in hospice home care over a year.. In my experience there are nurses that shouldn’t be in hospice at all. At first it was wonderful! Until case nurse left. Everyone changed. The care was different. Medicine was being changed . I didn’t agree. To many changes. I just don’t get it. My husband is dying just let it be. We don’t want in hospice care. However if his pain isn’t manageable at home well he will have to go into hospice care. Just for the record his pain is manageable . As his caregiver don’t I have the right to pick and choose the care and medication that works? Anyway for me hospice isn’t what people are saying about it, it’s just not so in my experience. To the hospice nurses you rock to the business side not so much. We need more educated hospice nurses!! It doesn’t take a rocket scientist to figure out that something is terrible wrong. Thanks for letting me vent.
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BK Books replied:
Pamela, I hear and share your frustration about some hospice care. Not all hospices provide the same quality of care. Not all staff in the hospice necessarily provide the same care. You can ask for a different nurse. You can ask your physician about pain management and express your concerns about the care you are receiving. In the US you can switch hospices if you are dissatisfied with the current one. Hospice is there to help and ease not create more discomfort. Blessings to you and your husband.. Barbara
Hi my husband has been in hospice home care over a year.. In my experience there are nurses that shouldn’t be in hospice at all. At first it was wonderful! Until case nurse left. Everyone changed. The care was different. Medicine was being changed . I didn’t agree. To many changes. I just don’t get it. My husband is dying just let it be. We don’t want in hospice care. However if his pain isn’t manageable at home well he will have to go into hospice care. Just for the record his pain is manageable . As his caregiver don’t I have the right to pick and choose the care and medication that works? Anyway for me hospice isn’t what people are saying about it, it’s just not so in my experience. To the hospice nurses you rock to the business side not so much. We need more educated hospice nurses!! It doesn’t take a rocket scientist to figure out that something is terrible wrong. Thanks for letting me vent.
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BK Books replied:
Pamela, I hear and share your frustration about some hospice care. Not all hospices provide the same quality of care. Not all staff in the hospice necessarily provide the same care. You can ask for a different nurse. You can ask your physician about pain management and express your concerns about the care you are receiving. In the US you can switch hospices if you are dissatisfied with the current one. Hospice is there to help and ease not create more discomfort. Blessings to you and your husband.. Barbara
Dennis Amato
Dear Barbara,
Your thoughts, feelings and knowledge expressed above, witnessed by the comments that followed, should be heard by all and need be taught throughout the hospice industry.
There should be educational requirements and a certificate mandated for anyone wishing to work in this most important field.
Thank you for all you have done.
Dennis
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BK Books replied:
Hi Dennis, I agree there needs to be some way of ensuring that those providing end of life care know how to do it, and are trained appropriately. End of life care is different from care for those who are going to get better. It certainly is a speciality area. Blessings! Barbara
Dear Barbara,
Your thoughts, feelings and knowledge expressed above, witnessed by the comments that followed, should be heard by all and need be taught throughout the hospice industry.
There should be educational requirements and a certificate mandated for anyone wishing to work in this most important field.
Thank you for all you have done.
Dennis
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BK Books replied:
Hi Dennis, I agree there needs to be some way of ensuring that those providing end of life care know how to do it, and are trained appropriately. End of life care is different from care for those who are going to get better. It certainly is a speciality area. Blessings! Barbara
Linda Smithson
I still miss hospice nursing, having been a hospice nurse for 9 yrs and retired now for 3. For me, hospice was a passion, I loved it. It saddened me to see nurses coming into the field with the “job” point of view. Orientation needs to be longer and more patient/education centered, not just rules and regs and how to get your charting done.
I am in touch with a few of my former hospice colleagues, and the job I loved sounds gone.
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BK Books replied:
I know Linda. The changes are the reason I wrote this blog. Blessings! Barbara
I still miss hospice nursing, having been a hospice nurse for 9 yrs and retired now for 3. For me, hospice was a passion, I loved it. It saddened me to see nurses coming into the field with the “job” point of view. Orientation needs to be longer and more patient/education centered, not just rules and regs and how to get your charting done.
I am in touch with a few of my former hospice colleagues, and the job I loved sounds gone.
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BK Books replied:
I know Linda. The changes are the reason I wrote this blog. Blessings! Barbara
Germaine
So true. My mom was on hospice and they took her off even though she was still dying. It left us high and dry with no help.
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BK Books replied:
Hi Germaine, I’m sorry to hear that. It must have been very challenging for you without support. Blessings! Barbara
So true. My mom was on hospice and they took her off even though she was still dying. It left us high and dry with no help.
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BK Books replied:
Hi Germaine, I’m sorry to hear that. It must have been very challenging for you without support. Blessings! Barbara
Lorraine Shelly
I am 92 and asked for a referral to palliative care. My NPCOMES OUT ONCE A MONTH. SHE CHECKS MY BLOOD PRESSURE AND CHECKS MY PULSE.
AND THAT IS IT. PERHAPS I AM Lucky I HAVE NO BIG Issue except my age. Would it be okay to ask her what training she had for this work. I told her I have some chest discomfort and she just wrote it down with no questions.
To be clear I don’t know what I expected.
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BK Books replied:
Hi Lorraine, I’m not sure how palliative care works since different agencies offer different things. I can say to ask her anything you want. She is supposed to be working for you. You can also ask the palliative care agency what are the services they provide, what are the expectations of the monthly visits. Blessings! Barbara
I am 92 and asked for a referral to palliative care. My NPCOMES OUT ONCE A MONTH. SHE CHECKS MY BLOOD PRESSURE AND CHECKS MY PULSE.
AND THAT IS IT. PERHAPS I AM Lucky I HAVE NO BIG Issue except my age. Would it be okay to ask her what training she had for this work. I told her I have some chest discomfort and she just wrote it down with no questions.
To be clear I don’t know what I expected.
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BK Books replied:
Hi Lorraine, I’m not sure how palliative care works since different agencies offer different things. I can say to ask her anything you want. She is supposed to be working for you. You can also ask the palliative care agency what are the services they provide, what are the expectations of the monthly visits. Blessings! Barbara
Rachel
Thank you Barbara. The ministry of end-of-life care has unfortunately been usurped by a business model focused on numbers of visits per day and production points. In order to keep up with expectations the business wants 5 to 6 visits per day as the ideal. The gift of presence is no longer the goal. I see no focus at all on self-care and recognition of how this work taxes the individuals engaged in it- emotionally, physically and spiritually. It’s no wonder there is such high turnover at my workplace. I have passed along all your books and training materials to others as I attempt to impart some education and encourage balance.
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BK Books replied:
Hi Rachel, you outline exactly the reasons I wrote this blog. I am very concerned that the hospice I know and love is fading away as it becomes a big business. Blessings to you in the work you are doing. Barbara
Thank you Barbara. The ministry of end-of-life care has unfortunately been usurped by a business model focused on numbers of visits per day and production points. In order to keep up with expectations the business wants 5 to 6 visits per day as the ideal. The gift of presence is no longer the goal. I see no focus at all on self-care and recognition of how this work taxes the individuals engaged in it- emotionally, physically and spiritually. It’s no wonder there is such high turnover at my workplace. I have passed along all your books and training materials to others as I attempt to impart some education and encourage balance.
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BK Books replied:
Hi Rachel, you outline exactly the reasons I wrote this blog. I am very concerned that the hospice I know and love is fading away as it becomes a big business. Blessings to you in the work you are doing. Barbara
Kim Allen Silvers
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I couldn’t agree more!
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BK Books replied:
Hi Kim, thank you for sharing. Blessings! Barbara
💯
I couldn’t agree more!
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BK Books replied:
Hi Kim, thank you for sharing. Blessings! Barbara