Being on the Receiving Side of Hospice

It isn’t until you walk in another’s shoes that you really know what something feels like. As most of you know my husband was on hospice services recently and died. Here are some thoughts after being on the other side of hospice, on the receiving side. 

*Once we get up the courage to call hospice, we want to see you immediately.  Actually, we needed to see you, hear your guidance and advice, and receive your services yesterday. Families tend to be overwhelmed and have trouble coping when they reach the point of asking for help. Hospice is that help. Don’t make us wait. Within 24 hours, make that much anticipated home visit.

*Get to know us and hear our storbefore you introduce all the required paperwork that the computer needs signatures for. After that initial show of computer and official business NEVER let us see your computer again. You can take discrete notes, then get in your car, drive around the corner or go to a 7/11 parking lot and do the charting there. Your goal is to create a relationship that brings comfort, guidance, and education. It is not to have an air of “officialdom.” You can be professional, open, direct, easily understood, instructional, and gentle without a computer in front of you. It is difficult to get to friendship, personhood, and support with a computer on your lap.

*Dying and death calls are the goal of the work hospice does. Everything, all your words and services, lead up to the moment of death. The patient’s death is what your work is all about, YET it seems that fewer and fewer hospices are actually with the family at the moment of death. 

*A pronouncement visit is not a ten minute, in the door, look at the body and out the door visit. It is a “Tell me what happened. How are you doing? What are you thinking?” kind of visit. It is time to straighten the room, tidy the body and gather those present for a final goodbye. It is a "wait for the funeral home to come" visit. While waiting, use that time to offer guidance and comfort. When the funeral home leaves with the body, straighten the room, make the bed, put a memento on the pillow and leave the light on. This entire visit is creating a sacred finish to a life. Through this support you are creating a sacred memory the family will carry with them forever. If there was no guiding support during the actual death, then this kind of death call will help ease the pain the experience has created and provide the kind of support and guidance hospice is intended to provide. It is what we do—-comfort.

*I would like to see the primary care nurse, social worker, and even the home health aide make a home visit towards the end of the week following the death. This will give closure for the family with the hospice staff. It is an opportunity to ask final questions, to express thoughts about all that has happened and to say goodbye. This will give closure to not just the family of the patient, but closure to the nurse, social worker, and home health aide so they can move on to the next and the next.

As I do, I am giving you something to think about. 

Something More… about Being On The Receiving Side of Hospice

Hospice workers face unique challenges as they care for the dying and their famiies. Support and self care are crucial to these remarkable caregivers. I encourage hospice agencies to have an in-service with their team at least once a year where they watch my dvd/vimeo film, Care For The Caregiver together. Ideally each member of the team would be given the booklet You Need Care Too to further support the team.

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Barbara, you said this so very elegantly. I agree with what you wrote – it’s as if the hospice service I was trained in many years ago, is not part of the practice anymore. They do such good work, but it just ends bluntly, in my experience.
Thank you for bringing this to our attention…and confirming that I’m not just imagining this.
with warm regards and may 2024 bring you joy and peace, even as you hold grief and loss.
love, always.
BK Books replied:
Mirinda, Yes, hospice services have changed over the years. I think when it was outside of the medical model it was able to provide more personalized, less time focused, care. The change in hospice care opened the door to end of life doulas who are filling the void today’s hospice care leaves. Blessings to you in the work you are doing. Barbara


I agree in spades about not having the computer during the visits. However, management STRESSED that we should be documenting in the home during the visit. It takes more time to document after the visit, but better for our families. Management seems to forget the really important part of doing this work, being present during a really difficult time.
BK Books replied:
Hi Amy, I know it is frustrating when those caring patients and those working in the offices are not on the same page. Blessings to you in the work you are doing. Barbara


Barabara, thank you for being so transparent and sharing your heart and recognizing loopholes in this vocation. I appreciate VERY MUCH what you wrote in the above blog. Blessings to you …
BK Books replied:
Hi Dora, thank you for your words. Blessings! Barbara

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