Dear Barbara, My husband was diagnosed with dementia.He has been under hospice care for over 2 years in a residential care home and has now entered EOL stage. Our hospice “service” in AZ focus solely on providing for the needs of my husband so I’m looking for resources to support me and our son.
I responded to this woman but feel led to address “our hospice service in AZ focus solely on providing to the needs of my husband” with anyone who will listen.
My hope is this woman fell through the cracks or misunderstood “hospice service focuses solely” on the needs of the patient. For the record, Hospice service very much focuses on the family and primary caregiver. When in a nursing facility, then their service also includes the staff of the nursing facility.
As I type this, the thought occurs to me that the hospice is considering the staff the primary caregiver and not including the family as part of care. Surely not!! Tell me that isn’t true!!!!
From the very beginning of hospice care in this country, before there was reimbursement and regulations, the plan of care ALWAYS included the family and primary care person. When the Medicare regulations were written family was specifically included. Why would we have bereavement follow-up and support written into the regulations and plan of care if it were not addressing the needs of the family?
90% of end of life care is about education. Education of the signs of approaching death and what to do as it approaches for THE FAMILY AND CAREGIVER.
Dying is not a medical event. It is a social, communal event. Dying is not a time for procedures or medications. It is time for support, guidance and reassurance FOR THE FAMILY.
These phrases I’ve said, (actually shouted from the rooftops) for years, 43 years to be exact. These sentences are the essence of end of life care, the essence of hospice care FOR THE FAMILY AND CAREGIVER. Hospice is very much about the patient and family. The patient we keep comfortable and the family we support, guide, and reassure.
is for both professionals and laypeople. This book weaves personal stories with practical care guidelines, including: living with a life-threatening illness, signs of the dying process, the stages of grief, living wills, and other end of life issues.
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.
8 comments
Elsa
My husband recently died under hospice care in Arizona. He died 10 1/2 months after being accepted by our doctor’s hospice organization. In the beginning the hospice seemed to go out of their way to ignore me, even though I was his primary caregiver, with my own set of serious health problems. I knew that the family unit was considered part of hospice care because I was a hospice volunteer back in the 1980’s. Finally, the last 6 weeks of my husband’s life a new hospice nurse was hired who was much more experienced and I felt like I was seen and heard and supported through this most difficult time. Staff turnover, lack of training, COVID all contributed to the organization cutting corners and thinking I wouldn’t know the difference. It was definitely a power play by the corporation putting profit over the needs of the family they are supposed to support with education and emotional care. The hospice RN told me on the day my husband died that the team cared but they had to follow corporate guidelines. I didn’t feel like I could change hospices because my husband bonded with our primary care physician who is the director of this hospice. He did get good care but I was almost totally ignored without even respite suggested until after 6 months when an outside Rn re-qualified my husband for another two months of continuing care.
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BK Books replied:
Hi Elsa, I’m so sorry the hospice did not give you support. Yes, you are as much the hospice’s responsibility as your husband was. You might talk with the corporation head as well as your physician (since he is on staff) and tell them of the lack of care you received. It won’t help you now but may help someone else in the future. If you do not feel satisfied with the response you get from them go to medicare.gov and file a complaint. Blessings! Barbara
My husband recently died under hospice care in Arizona. He died 10 1/2 months after being accepted by our doctor’s hospice organization. In the beginning the hospice seemed to go out of their way to ignore me, even though I was his primary caregiver, with my own set of serious health problems. I knew that the family unit was considered part of hospice care because I was a hospice volunteer back in the 1980’s. Finally, the last 6 weeks of my husband’s life a new hospice nurse was hired who was much more experienced and I felt like I was seen and heard and supported through this most difficult time. Staff turnover, lack of training, COVID all contributed to the organization cutting corners and thinking I wouldn’t know the difference. It was definitely a power play by the corporation putting profit over the needs of the family they are supposed to support with education and emotional care. The hospice RN told me on the day my husband died that the team cared but they had to follow corporate guidelines. I didn’t feel like I could change hospices because my husband bonded with our primary care physician who is the director of this hospice. He did get good care but I was almost totally ignored without even respite suggested until after 6 months when an outside Rn re-qualified my husband for another two months of continuing care.
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BK Books replied:
Hi Elsa, I’m so sorry the hospice did not give you support. Yes, you are as much the hospice’s responsibility as your husband was. You might talk with the corporation head as well as your physician (since he is on staff) and tell them of the lack of care you received. It won’t help you now but may help someone else in the future. If you do not feel satisfied with the response you get from them go to medicare.gov and file a complaint. Blessings! Barbara
Cheryl Egley
Hospice of the Valley is PREMIER in hospice care. I’m not sure what hospice agency the above lady had, but it certainly wasn’t Hospice of the Valley. We personally know several involved including the former director who retired recently.
Hospice of the Valley is PREMIER in hospice care. I’m not sure what hospice agency the above lady had, but it certainly wasn’t Hospice of the Valley. We personally know several involved including the former director who retired recently.
Michael
as being the primary caregiver for my wife of 50 years it is a blessing to have hospice and Barbara’s books to help guide me along this journey.
The books help to preserve dignity for myself and my wife and give me the knowledge to better handle things in the road ahead.
No matter what I might say or suggest it is reassuring to have the hospice team tell my spouse their suggestions and preparations on how to handle things to come and give a real sense of peace and understanding.
Thank you for your books and thank you hospice workers
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BK Books replied:
Blessings to you and your wife. Barbara
as being the primary caregiver for my wife of 50 years it is a blessing to have hospice and Barbara’s books to help guide me along this journey.
The books help to preserve dignity for myself and my wife and give me the knowledge to better handle things in the road ahead.
No matter what I might say or suggest it is reassuring to have the hospice team tell my spouse their suggestions and preparations on how to handle things to come and give a real sense of peace and understanding.
Thank you for your books and thank you hospice workers
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BK Books replied:
Blessings to you and your wife. Barbara
Miriam
I certainly agree with the comments above – in a perfect world, hospice would be warm and compassionate to the patient and the family. But that unfortunately is not always the case. My mom was in a nursing home in NY in 2016. The hospice care she received was horrible – the nurse went on vacation with no one to cover. I called the hospice doctor with a question about the care and was told, in no uncertain terms “Your mother is actively dying and there’s nothing more to do for her!” A few years after my mom passed I relocated to Tucson. My friend was in the local hospice facility “TMC – Peppi’s House” and I was so impressed with the nursing care and compassion for both residents and families that I began volunteering there and have not been disappointed.
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BK Books replied:
You’ve pointed out both ends of the kind of care hospice has these days. It is so important to do research into various hospices before choosing. AND to dismiss a hospice that is not meeting your needs and go to a different one. Blessings, Barbara
I certainly agree with the comments above – in a perfect world, hospice would be warm and compassionate to the patient and the family. But that unfortunately is not always the case. My mom was in a nursing home in NY in 2016. The hospice care she received was horrible – the nurse went on vacation with no one to cover. I called the hospice doctor with a question about the care and was told, in no uncertain terms “Your mother is actively dying and there’s nothing more to do for her!” A few years after my mom passed I relocated to Tucson. My friend was in the local hospice facility “TMC – Peppi’s House” and I was so impressed with the nursing care and compassion for both residents and families that I began volunteering there and have not been disappointed.
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BK Books replied:
You’ve pointed out both ends of the kind of care hospice has these days. It is so important to do research into various hospices before choosing. AND to dismiss a hospice that is not meeting your needs and go to a different one. Blessings, Barbara
Leslie Clifton
My father wanted to deny my daughter in the at home hospice. Our nurse was a gem. She gave each of us your book, gone from my sight. We smuggled her in and she sat in a dining chair he couldn’t see from the living room. She was factual and gentle with us. Then she would go to him. Dad went thru all the stages rather quickly, 23 days. this was summer of ’17. I relive it like it was last week. He and I will visit next week on Holloween. I hope he approves for my lastest handling.
My father wanted to deny my daughter in the at home hospice. Our nurse was a gem. She gave each of us your book, gone from my sight. We smuggled her in and she sat in a dining chair he couldn’t see from the living room. She was factual and gentle with us. Then she would go to him. Dad went thru all the stages rather quickly, 23 days. this was summer of ’17. I relive it like it was last week. He and I will visit next week on Holloween. I hope he approves for my lastest handling.
Randy
Like anything in life, there’s a wide variety in Hospice care. We interviewed five. We agreed on the best one that fit our needs. After about a month, they called my partner who was the one being cared for and quit. THEY QUIT US! Who ever heard of a Hospice quitting on a patient? It was so traumatizing for her. We found another one, but then there was the parade of Hospice care givers where Hospice seemed to just be a job for them. After going through a few who didn’t quite fit, we finally found a nurse that connected with her heart to heart and caregiving got much easier. That nurse was the perfect fit. Truly a caring person. Moral is, if things aren’t going right for you, make changes.
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BK Books replied:
I so agree. Blessings! Barbara
Like anything in life, there’s a wide variety in Hospice care. We interviewed five. We agreed on the best one that fit our needs. After about a month, they called my partner who was the one being cared for and quit. THEY QUIT US! Who ever heard of a Hospice quitting on a patient? It was so traumatizing for her. We found another one, but then there was the parade of Hospice care givers where Hospice seemed to just be a job for them. After going through a few who didn’t quite fit, we finally found a nurse that connected with her heart to heart and caregiving got much easier. That nurse was the perfect fit. Truly a caring person. Moral is, if things aren’t going right for you, make changes.
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BK Books replied:
I so agree. Blessings! Barbara
Julie
I think it depends on the hospice and how thinly stretched the staff are. I had a friend whose father was under hospice while dying at home and they were totally left hanging and clueless about what to do, without resources or support options. I think the era of covid and short staffing has affected many areas of elder care and hospice. Hospice basically helped set her father up, sent in a nurse a few times to check on him, and were then told to “call us when he’s passed.”
My friend was pretty upset about the whole experience. They got a card from hospice about a month after he died acknowledging his death. That’s it. When you’re a care giver in the midst of managing a loved one who is dying it’s hard to advocate for oneself in getting resources for your own needs.
Her parents lived in a rural county, so maybe that had something to do with it? Overall I was shocked that no one reached out after or offered any support services for her and her mother who were both caring for her father. They had no idea what the stages of dying looked like.
I advised her to give the hospice feedback about their experience and how unsupported they felt. I don’t believe their expectations were overly high. Ironically my friend is a social work policy advisor for department of aging in California. Her father died in upstate NY.
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BK Books replied:
It always makes me sad to hear these kind of stories about hospices not providing comprehensive care. I don’t accept being short staff as an acceptable reason for poor care. Blessings, Barbara
I think it depends on the hospice and how thinly stretched the staff are. I had a friend whose father was under hospice while dying at home and they were totally left hanging and clueless about what to do, without resources or support options. I think the era of covid and short staffing has affected many areas of elder care and hospice. Hospice basically helped set her father up, sent in a nurse a few times to check on him, and were then told to “call us when he’s passed.”
My friend was pretty upset about the whole experience. They got a card from hospice about a month after he died acknowledging his death. That’s it. When you’re a care giver in the midst of managing a loved one who is dying it’s hard to advocate for oneself in getting resources for your own needs.
Her parents lived in a rural county, so maybe that had something to do with it? Overall I was shocked that no one reached out after or offered any support services for her and her mother who were both caring for her father. They had no idea what the stages of dying looked like.
I advised her to give the hospice feedback about their experience and how unsupported they felt. I don’t believe their expectations were overly high. Ironically my friend is a social work policy advisor for department of aging in California. Her father died in upstate NY.
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BK Books replied:
It always makes me sad to hear these kind of stories about hospices not providing comprehensive care. I don’t accept being short staff as an acceptable reason for poor care. Blessings, Barbara
Donna
Oh Barbara, how I wish Hospice care was like what you describe. “Why would we have bereavement follow-up and support written into the regulations and plan of care if it were not addressing the needs of the family?” We got NOTHING like this from the hospice we used. And after my brother died we never even got a phone call or a condolence card from the agency. Never heard from them again. And prior to his death they provided nothing in terms of family support. It was all about medication. We live in the 4th largest city in the country and used a highly recommended agency. Hospice today is nothing like the wonderful ideal you describe in your books. I wish you had more influence over these agencies. The current reality is a sad, disappointing one.
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BK Books replied:
I know Donna, it makes me sad also to see hospices providing such substandard care. Blessings, Barbara
Oh Barbara, how I wish Hospice care was like what you describe. “Why would we have bereavement follow-up and support written into the regulations and plan of care if it were not addressing the needs of the family?” We got NOTHING like this from the hospice we used. And after my brother died we never even got a phone call or a condolence card from the agency. Never heard from them again. And prior to his death they provided nothing in terms of family support. It was all about medication. We live in the 4th largest city in the country and used a highly recommended agency. Hospice today is nothing like the wonderful ideal you describe in your books. I wish you had more influence over these agencies. The current reality is a sad, disappointing one.
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BK Books replied:
I know Donna, it makes me sad also to see hospices providing such substandard care. Blessings, Barbara