Hospice Care Is For the Patient AND the Family

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.

Something More... about Hospice Care Is For the Patient AND the Family
My book, The Final Act of Living: Reflections From A Long-Time Hospice Nurse,

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.

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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.
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


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.
BK Books replied:
I know Donna, it makes me sad also to see hospices providing such substandard care. Blessings, Barbara

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