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
Katherine
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
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
Barbara Hall
Yes, indeed your on point with your comments Barbara.
We are your cheerleaders and we desperately need change.
Love and blessings.
Barbara
Yes, indeed your on point with your comments Barbara.
We are your cheerleaders and we desperately need change.
Love and blessings.
Barbara
Althea Halchuck
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.
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.
Carl Laughead
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
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
———
BK Books replied:
Carl, thank you for your kind words. I’m glad my booklets are helpful in this life journey. Blessings! Barbara
Julie
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
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
———
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
Julie
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
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
Molly
Barbara,
I can not begin to thank for your assessment and comments. I am retired Community Health Nurse with a passion for end of life care. It is sheer pain, as a volunteer, after 50 years of nursing,to watch the current environment of hospice care. Even as a volunteer, I was beginning to be restricted in what I was able to be doing. Everything was feeling tense, tight and limited. Several times it brought me to tears. Then Covid arrived, my volunteering was curtailed. I have not started again. I am going to do my best with family and friends who have end of life needs. I will not be able to give up my joy and gratitude for being able to help another pass.
Molly
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BK Books replied:
Hi Molly, I’m sorry to hear of your frustration with the changes that have occurred in hospice. Do you think that by continuing to volunteer for them you can make your voice heard, that you can help the administration see care differently? It would be a shame for them to lose a dedicated volunteer. Blessings to you. Barbara
Barbara,
I can not begin to thank for your assessment and comments. I am retired Community Health Nurse with a passion for end of life care. It is sheer pain, as a volunteer, after 50 years of nursing,to watch the current environment of hospice care. Even as a volunteer, I was beginning to be restricted in what I was able to be doing. Everything was feeling tense, tight and limited. Several times it brought me to tears. Then Covid arrived, my volunteering was curtailed. I have not started again. I am going to do my best with family and friends who have end of life needs. I will not be able to give up my joy and gratitude for being able to help another pass.
Molly
———
BK Books replied:
Hi Molly, I’m sorry to hear of your frustration with the changes that have occurred in hospice. Do you think that by continuing to volunteer for them you can make your voice heard, that you can help the administration see care differently? It would be a shame for them to lose a dedicated volunteer. Blessings to you. Barbara
Doug
Barbara, I read your original article and never felt you were turning your back on hospice. I have had the same thoughts regarding regulation, that being that regulators regulate because that is what they do. We have allowed ourselves to be over regulated by acquiescing to the system’s demands or they will withhold money. In your mind, is there a way out? Can we take some steps away from reliance on the outside funding and avoid the regulatory constraints?
———
BK Books replied:
Hi Doug, this week I became aware of two hospices that are totally not for profit, are not certified by medicare, are mostly volunteer staff and go to the community for support and funding. This is how hospice began in the 80’s. Are we coming full circle? End of Life doulas are also coming into the picture as a result of the decreased amount of time hospice staff spend with patients and families. Hospice has been absorbed by the medical and for profit communities while EOL doulas are again (as hospice was originally) outside of the medical model. Maybe EOL doulas will be able to avoid following in hospice’s footsteps. There are excellent medicare, certified hospices out there. Hospices that have patients and staff as their priority and focus——-you just have to search to find them. Doug, thanks for asking. Blessings to you in the work you are doing. Barbara
Barbara, I read your original article and never felt you were turning your back on hospice. I have had the same thoughts regarding regulation, that being that regulators regulate because that is what they do. We have allowed ourselves to be over regulated by acquiescing to the system’s demands or they will withhold money. In your mind, is there a way out? Can we take some steps away from reliance on the outside funding and avoid the regulatory constraints?
———
BK Books replied:
Hi Doug, this week I became aware of two hospices that are totally not for profit, are not certified by medicare, are mostly volunteer staff and go to the community for support and funding. This is how hospice began in the 80’s. Are we coming full circle? End of Life doulas are also coming into the picture as a result of the decreased amount of time hospice staff spend with patients and families. Hospice has been absorbed by the medical and for profit communities while EOL doulas are again (as hospice was originally) outside of the medical model. Maybe EOL doulas will be able to avoid following in hospice’s footsteps. There are excellent medicare, certified hospices out there. Hospices that have patients and staff as their priority and focus——-you just have to search to find them. Doug, thanks for asking. Blessings to you in the work you are doing. Barbara
Cathy
Barbara,
Once again, thank you for your insight. I am a Social Worker and my frustration is growing. All staff was recently notified by management of how much time we can spend with a patient. An MSW visit? 30 minutes! Perhaps for someone with dementia that would be okay, but patient/families need to talk and I will not tell them “I’m sorry, regulations prevent me from giving you more than 30 minutes to share your grief.” The regulations are strangling us. I did not get into hospice to be told by pencil pushers I can’t help my patients. My priority will always be patient and family. Oh, and I did raise my concern. I haven’t heard back yet.
———
BK Books replied:
Cathy, I am so sorry your agency placed such unrealistic visit requirements on you. Why isn’t the social worker or nurse or CNA respected enough to be the judge of how long a visit is? Some visits can be complete in 30 minutes, some in an hour and as death gets closer two visits a day may be be necessary to alleviate the fear of a loved one dying. It is the professional that reacts to the dynamics of the daily situation not the administrative staffer in the office who should determine visit length. I used to say before I rang the doorbell “I seek to heal not hurt”. You never know what you will find on the other side of the front door. Hold true to your integrity, interact with the family and patients as long as you feel is necessary per visit. Blessings to you in the work you are doing. Barbara
Barbara,
Once again, thank you for your insight. I am a Social Worker and my frustration is growing. All staff was recently notified by management of how much time we can spend with a patient. An MSW visit? 30 minutes! Perhaps for someone with dementia that would be okay, but patient/families need to talk and I will not tell them “I’m sorry, regulations prevent me from giving you more than 30 minutes to share your grief.” The regulations are strangling us. I did not get into hospice to be told by pencil pushers I can’t help my patients. My priority will always be patient and family. Oh, and I did raise my concern. I haven’t heard back yet.
———
BK Books replied:
Cathy, I am so sorry your agency placed such unrealistic visit requirements on you. Why isn’t the social worker or nurse or CNA respected enough to be the judge of how long a visit is? Some visits can be complete in 30 minutes, some in an hour and as death gets closer two visits a day may be be necessary to alleviate the fear of a loved one dying. It is the professional that reacts to the dynamics of the daily situation not the administrative staffer in the office who should determine visit length. I used to say before I rang the doorbell “I seek to heal not hurt”. You never know what you will find on the other side of the front door. Hold true to your integrity, interact with the family and patients as long as you feel is necessary per visit. Blessings to you in the work you are doing. Barbara
Anna Holden
Thank you Barbara for your dedication.
Your books helped me so much when my brother was dying in Palm Springs, CA.
I live in Australia now and several people including my psychiatric oncologist have asked about them. I’ve just raved and raved to anyone who is in the position I was in 2 years ago. I have ordered one set to be sent to my daughter in Los Angeles she will forward them on to me in Australia. ♥️♥️
Thank you Barbara for your dedication.
Your books helped me so much when my brother was dying in Palm Springs, CA.
I live in Australia now and several people including my psychiatric oncologist have asked about them. I’ve just raved and raved to anyone who is in the position I was in 2 years ago. I have ordered one set to be sent to my daughter in Los Angeles she will forward them on to me in Australia. ♥️♥️
OmaVic
Dear Barbara, Thanks for putting this out there. I have only started my journey as an EOLD and can see how stretched hospice workers are. It is sad because the hospice workers want to do as much as they know should be provided but are constantly being challenged to ‘shore up’ the visit, I can sense their struggle. I know my role as an EOLD helps them know their clients are getting some of their needs met by me but most people don’t have EOLD’s and ‘the hospice system’ should not squeeze the humanity out of the process. One cup of hospice needs to be on cup of care, and not a teaspoon less. Thanks for such a well thought out post.
Dear Barbara, Thanks for putting this out there. I have only started my journey as an EOLD and can see how stretched hospice workers are. It is sad because the hospice workers want to do as much as they know should be provided but are constantly being challenged to ‘shore up’ the visit, I can sense their struggle. I know my role as an EOLD helps them know their clients are getting some of their needs met by me but most people don’t have EOLD’s and ‘the hospice system’ should not squeeze the humanity out of the process. One cup of hospice needs to be on cup of care, and not a teaspoon less. Thanks for such a well thought out post.
Susie
Well said. It truly takes a Hospice Heart to help patients and families in their journey. Regulations hinder care, do you spend quality time and care risking a financial backlash.
I love my caring for patients at end of life no matter their situation. Patient/family 1st.
———
BK Books replied:
Thank you Susie. Blessings to you in the work you are doing. Barbara
Well said. It truly takes a Hospice Heart to help patients and families in their journey. Regulations hinder care, do you spend quality time and care risking a financial backlash.
I love my caring for patients at end of life no matter their situation. Patient/family 1st.
———
BK Books replied:
Thank you Susie. Blessings to you in the work you are doing. Barbara
Beverly Tuomala
Thank you so much for saying what needed to be said! I am an RN in the field and the burden is tremendous – getting those visits and meeting those markers is exhausting, then there is the charting which most of it no one sees (talking about HCHB) but we have to chart to meet those Medicare Regulations, its repetitive and mindless. I don’t want to leave hospice, I love the work and like you said it is a calling…. My company really tries not to overburden us – we set our schedule and they try to leave us alone. Getting admitting nurses, evening/overnight nurses and LVN’s has really helped. Luckily they don’t push our productivity too much – but some days 3-4 patients is all you can see, and that’s got to be ok.
Thank you so much for saying what needed to be said! I am an RN in the field and the burden is tremendous – getting those visits and meeting those markers is exhausting, then there is the charting which most of it no one sees (talking about HCHB) but we have to chart to meet those Medicare Regulations, its repetitive and mindless. I don’t want to leave hospice, I love the work and like you said it is a calling…. My company really tries not to overburden us – we set our schedule and they try to leave us alone. Getting admitting nurses, evening/overnight nurses and LVN’s has really helped. Luckily they don’t push our productivity too much – but some days 3-4 patients is all you can see, and that’s got to be ok.
Fay
To Barbara and all of the Hospice staff commenting here—
My mom is under hospice care with 24/7 caregivers. She’s in FL and I live across the country in CA. My sister lives near my mom but the responsibility for her is carried by both of us. Thank you for this perspective and insight. I am beyond grateful for the wonderful, kind, patient, and knowledgeable Hospice nurses and aides that have been caring for my mom and supporting my sister and me by providing their guidance. It makes all the difference. Rest assured, I will express my gratitude to them. As well, knowing the pressure they are working under, I will try to be efficient with their time!
Hugs to all of you.
———
BK Books replied:
Hi Fay, thank you for your kind words about the hospice staff you are working with. I just want to say it is not your responsibility, as a caregiver, to be aware of the time constraints hospice staff may have. They are there to support, guide and care for you. Keep them as long as you need them. Their job is to be there for you. Blessings to you and your family. Barbara
To Barbara and all of the Hospice staff commenting here—
My mom is under hospice care with 24/7 caregivers. She’s in FL and I live across the country in CA. My sister lives near my mom but the responsibility for her is carried by both of us. Thank you for this perspective and insight. I am beyond grateful for the wonderful, kind, patient, and knowledgeable Hospice nurses and aides that have been caring for my mom and supporting my sister and me by providing their guidance. It makes all the difference. Rest assured, I will express my gratitude to them. As well, knowing the pressure they are working under, I will try to be efficient with their time!
Hugs to all of you.
———
BK Books replied:
Hi Fay, thank you for your kind words about the hospice staff you are working with. I just want to say it is not your responsibility, as a caregiver, to be aware of the time constraints hospice staff may have. They are there to support, guide and care for you. Keep them as long as you need them. Their job is to be there for you. Blessings to you and your family. Barbara
Sharon
Thank you for validating how many of us feel! You are absolutely correct! We are constantly being told that we are not meeting productivity because the hours we show on our time cards don’t match up to the algorithm of how long it should take you to see a certain amount of patients. Our patients and families need us more than ever. We are being asked to do more yet keep our hours within the productivity marker. We are moving farther and farther away from the true meaning of hospice and it is becoming more of a medical model. We are being forced to graduate clients with long term illness such as AD,PD, ALS because they don’t meet Medicare requirements. There is no extra help options for many of our clients and their families/caregivers. Dealing with regulations and the business end of things is the most stressful part of my job. Your analogy of the measuring cup is 100% correct! I can’t tell you how many times that I leave a home thinking I should be staying longer but I can’t because of
my schedule and seeing the required amount of visits daily. No one takes into account that some clients and families need more time than others depending on the situation. It is nothing for me to work 8 hours in the field and come home to another 3 hours of documentation. Then they tell us we need to have a work life balance!
———
BK Books replied:
Oh Sharon, I hear you! Blessings! Barbara
Thank you for validating how many of us feel! You are absolutely correct! We are constantly being told that we are not meeting productivity because the hours we show on our time cards don’t match up to the algorithm of how long it should take you to see a certain amount of patients. Our patients and families need us more than ever. We are being asked to do more yet keep our hours within the productivity marker. We are moving farther and farther away from the true meaning of hospice and it is becoming more of a medical model. We are being forced to graduate clients with long term illness such as AD,PD, ALS because they don’t meet Medicare requirements. There is no extra help options for many of our clients and their families/caregivers. Dealing with regulations and the business end of things is the most stressful part of my job. Your analogy of the measuring cup is 100% correct! I can’t tell you how many times that I leave a home thinking I should be staying longer but I can’t because of
my schedule and seeing the required amount of visits daily. No one takes into account that some clients and families need more time than others depending on the situation. It is nothing for me to work 8 hours in the field and come home to another 3 hours of documentation. Then they tell us we need to have a work life balance!
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BK Books replied:
Oh Sharon, I hear you! Blessings! Barbara
Lynne Mahoney
Regulations 😫😫😫😫
Regulations 😫😫😫😫
Diane G.
Dear Barbara,
I hear you say we are getting further away from from care to the patient and their families. I agree & believe we need to monitor this as older nurses with a deep history and experience.
2/22 my father with advanced Parkinson’s was seen at Urgent Care with his 24/7 caregiver, my Mom. I was not allowed to join & help until his discharge. To make a long story short the lobby had signage noting that ‘staff are tired’ and ‘we ask you to be kind’. In fact I am kind, but I felt disregarded as a family member. Despite Covid, we need to be mindful of the center of our care: the patient & their circle of support, often family. Thank you for your concerns & insights.
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BK Books replied:
Hi Diane, you are right, family and caregivers need attention and consideration also. I think we have to use our voice when confronted with situations of being separated from our special person. Let everyone know if it is not acceptable, be the squeaky wheel or should I say be a loud wheel. Sometimes we just have to let people know when we consider something unacceptable. My blessings are with you. Barbara
Dear Barbara,
I hear you say we are getting further away from from care to the patient and their families. I agree & believe we need to monitor this as older nurses with a deep history and experience.
2/22 my father with advanced Parkinson’s was seen at Urgent Care with his 24/7 caregiver, my Mom. I was not allowed to join & help until his discharge. To make a long story short the lobby had signage noting that ‘staff are tired’ and ‘we ask you to be kind’. In fact I am kind, but I felt disregarded as a family member. Despite Covid, we need to be mindful of the center of our care: the patient & their circle of support, often family. Thank you for your concerns & insights.
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BK Books replied:
Hi Diane, you are right, family and caregivers need attention and consideration also. I think we have to use our voice when confronted with situations of being separated from our special person. Let everyone know if it is not acceptable, be the squeaky wheel or should I say be a loud wheel. Sometimes we just have to let people know when we consider something unacceptable. My blessings are with you. Barbara
Kristen
Thank you for all you do and all the education you give!! I totally agree with your frustration. As a nurse, I/we are frustrated. We go into hospice because it is a calling, but the regulations are wearing us out. I just went through your book this evening with a grieving wife. Your educational materials are so valuable. Thank you!!
Thank you for all you do and all the education you give!! I totally agree with your frustration. As a nurse, I/we are frustrated. We go into hospice because it is a calling, but the regulations are wearing us out. I just went through your book this evening with a grieving wife. Your educational materials are so valuable. Thank you!!
L Stinson
I work PRN, but consistently 2 days a week.
I see how good, caring, and dedicated the full time nursing staff is, and how overstretched, overburdened. I see this and know there has to be a better way that better serves clients and nurses. We are all in this together and I am grateful for your time speaking about this.
I work PRN, but consistently 2 days a week.
I see how good, caring, and dedicated the full time nursing staff is, and how overstretched, overburdened. I see this and know there has to be a better way that better serves clients and nurses. We are all in this together and I am grateful for your time speaking about this.
Gina
I totally agree. Regulations, regulations and more cumbersome regulations. When will it end? It really strains the joy of performing day to day hospice care.
I totally agree. Regulations, regulations and more cumbersome regulations. When will it end? It really strains the joy of performing day to day hospice care.
Mariluz Villa
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
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
Shelly C.
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 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
Paula Schneider
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
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
BAH, RN
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
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
Dolly
your love, caring and compassion shows and shines through!
your love, caring and compassion shows and shines through!
Diane
I could not agree with you more Barbara!!! I may not have been doing Hospice as long as you..but do grieve and am sadden by the current day regulations. You are not alone in your thoughts. Thank you for all your dedication, work and support to the very important cause.
I could not agree with you more Barbara!!! I may not have been doing Hospice as long as you..but do grieve and am sadden by the current day regulations. You are not alone in your thoughts. Thank you for all your dedication, work and support to the very important cause.
Laura
Bless you for what you have done over the years. I understand what you are saying having worked home health and hospice for many years as an RN.
Bless you for what you have done over the years. I understand what you are saying having worked home health and hospice for many years as an RN.
Jayne Reed
We had in-home hospice care for my mother, and now I’m looking into arranging it for myself as I age. Like many “baby boomers”, I believe very strongly in hospice care for our aged parents and ourselves.
We had in-home hospice care for my mother, and now I’m looking into arranging it for myself as I age. Like many “baby boomers”, I believe very strongly in hospice care for our aged parents and ourselves.