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 story before 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.
23 comments
Thank you Barbara. My mother recently died and we had a wonderful small hospice team come daily for the 2 weeks she had their service. The nurse and health aide happened to arrive moments after she peacefully died. My aunt and I were there by her side and she opened her eyes and looked right at us with a clarity we hadn’t seen in a week and we were able to tell her we’ll loved her and then she left her body. It was so comforting to have both the f them show up and just be with us as we came to understand she’s died. I held her wrist and checked her pulse and they settled into the room with us to offer presence and comfort. They helped me give her a final bath and change her. It was so important for me to be with her to give this final act of loving care to her since her body had been through so much the last couple months. It was their presence and attention to what was happening that made the difference. I sat with my moms body in my aunts room for a long while while they took care of details and that time was so precious for me. As a death doula I had worn my hat advocating for my mom in the hospital and with my family but I loved being cared for as a grieving daughter.
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BK Books replied:
Mia, thank you so much for sharing your experience. What your hospice team did for you is what I want all hospice teams to do. Blessings to you and your family. Barbara
Barbara, I have been so inspired by your books and thankful, but was so saddened to hear that your husband passed away. I am so sorry!
In 1984, my Dad was dying of Pancreatic cancer. My mom and siblings called in Hospice to care for him at my sister’s home. My sister and I were at his side when he passed away around 6:00 am. The Hospice nurse who was about to go off duty called every nurse who had cared for my Dad on different shifts to tell them my Dad had just passed away, and every one of them showed up to comfort us almost immediately. They stayed for a very long time. I was living in another state and was dreading leaving my family to go home and back to work after the funeral where my Dad’s death meant nothing to them. The Hospice nurses reassured me they would be there for me as well as for my Mom and siblings and gave me their phone numbers. They told me to call them anytime. Ironically, my Dad died on my sister’s birthday and I will always see it as a birthday gift from God as were all those Hospice nurses and doctor.
Thank you so much for all the work you do to enlighten those who aren’t familiar with the work that Hospice does.
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BK Books replied:
Nancy, thank you for sharing. Your hospice did what I want all hospices to do, be there when the families need them the most. Blessings to you and your family. Barbara
As a hospice aid, I agree with you Barbara, that an “after death” visit would help us (aids and nurses), too. When I lose a patient that that I’ve grown very close to, I often mourn alone. Most of the time, I am aware when it’s probably my last visit, the last time I will bathe them. Often they are minimally responsive but I talk to them, tell them how much I care, and place a gentle kiss on their hand or forehead. The kind your mom might give you at bedtime as a child. Then I watch for the work email saying the patient has passed. It’s hard. I want to hug the family that I’ve grown close to. I want to be with others who mourn the passing of this special soul. An after death visit would be a good thing.
Thank you for your post. When my wife died, our hospice nurse arrived quickly, confirmed the peaceful death, and provided comfort to me. He called the funeral home and explained next steps.
I am very grateful for the support we had from hospice and have no major criticisms.
I feel a need to comment about the use of technology. Like it or not, we live in a world of increasing use of computers, monitors, cell phones, et al. They are useful tools. Our hospice nurse recorded vital signs and processed orders for us on his computer, mostly in our home, and I found nothing wrong with that. I think it helped him to know that he had captured all the required data that helped him do his job.
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BK Books replied:
Mark, I am pleased to hear you had a positive hospice experience. Yes, computers have become part of the world we operate in. I just don’t want the focus on filling out required documentation to be at the expense of personal interactions. Blessings! Barbara
Hi Barbara: I love this post. You are the perfect person to comment on the other side of death and dying. I am a Soul Midwife/doula for the dying and hospice volunteer. I know my side of the story but you had a direct experience on the other side and I truly value your take on being on the receiving end of care. Western medicine has the potential of being more business and less personal these days. I see that with my own care providers. My hope and expectation is that a dying person (and their families) need extra special care delivered in a compassionate and personal manner.
I know the majority of Hospice nurses deliver this care time after time but this is a message that needs repeating. Take notes but leave the tablet for after the visit. Thank you for your valued input.
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BK Books replied:
Hi Dawn, Thank you for your kind words. You and I are so on the same page in our thinking about end of life care. Blessings to you in the work you are doing. Barbara
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