Dear Barbara, I started following a Facebook story that described a traumatic hospice experience. I would like your input. Here is what happened: A daughter died and the mother was not prepared for what to do following a hospice death at home.
The questions about this experience are:
1. What do you tell family members to do after their loved one has died?
2. How long is it usually before a funeral home can claim a body?
3. What should a family do when a loved one passes at home, over night, before a hospice nurse can get there?
Thank you for asking these questions. Here are my thoughts.
- What do you tell family members to do after their loved one has died?
First, I am going to tell them before their special person dies what dying will look like and what to expect will happen. Knowing ahead of time lets the family/significant others know, as they watch, that nothing pathological is happening. They can see that what is occurring was predicted ahead of time so while very sad is not bad or unexpected.
During that time I also encourage each person present to go in alone and spend time and say from their heart everything they need to say. The person dying is non-responsive but I reassure the family that their person can hear.
Immediately following the death I clean the body (offer family, if they want, to help or not), tidy the room, turn off overhead lights and have a small lamp on. Then I have the family come in to individually say goodbye again. This is the last time they will have a natural setting to say goodbye. Also, have the people present call anyone that needs to come over to say goodbye.
I see this as much a part of hospice education as anything, although less and less hospices are doing this.
Even if the hospice isn't there at the moment of death they can at least prepare the family ahead of the death about options of what to do and say.
A side note: I think hospice should stay until after the body is gone, tidy the room again, make the bed (even if it is a hospital bed) and leave a memento (picture, flower, stuffed animal, whatever you can find) on the pillow. This turns the room their loved one died in into a memorial of sorts rather than the nightmare of watching their loved one die. The room will hold the memory forever. We can make it a comforting memory. That is also a part of the hospice's job.
2. How long is it usually before a funeral home can claim a body?
There is no set time. Arrival depends on how busy the funeral home is, how far they have to drive and, I'm sure, other factors. Ideally, you call them and they get in their van and come over. At least they should give an estimated time of arrival.
3. What should a family do when a loved one passes at home, overnight, before a hospice nurse can get there?
In my mind there should be no "overnight, before the hospice nurse can get there."
My idea of hospice service is to come to the house (no matter the time, day or night) to guide and support the family and those people present through the trauma of watching their loved one be taken from their home to the funeral home.
I understand that with hospice today they generally are not with the family during the hours before and at the moment of death (I don't like that, I feel that being there is part of hospice's job but recognize it no longer is). BUT, who pronounces death if hospice doesn't come?
Why in the world would hospice leave a family with a dead body until morning because morning is convenient for them to visit? What is on call 24/7 for if not to support the family through this most frightening, challenging time? Tell me that is not happening!
Something More... about Traumatic Hospice Experience
We have resources to help train end of life caregivers. Hospice volunteers, Death Workers, Hospice Nurses (particularly the new hires), Chaplains, Social Workers can all benefit from our End of Life Caregiver Bundle.
14 comments
barbara
Hi Maria, what a wonderful, life affirming experience you had as your mother was dying. I didn’t realize hospice workers were able to spend 24/7 with families. Your description sounds more like what End of Life Doulas can do. Are you in the US? No matter, you were given a beautiful, life affirming gift. Blessings Barbara
If you would like to respond to my question use my personal email barbara@bkbooks.com I would love to know the name of the hospice. They are doing incredible work.
Hi Maria, what a wonderful, life affirming experience you had as your mother was dying. I didn’t realize hospice workers were able to spend 24/7 with families. Your description sounds more like what End of Life Doulas can do. Are you in the US? No matter, you were given a beautiful, life affirming gift. Blessings Barbara
If you would like to respond to my question use my personal email barbara@bkbooks.com I would love to know the name of the hospice. They are doing incredible work.
barbara
Hi Joanna, Thank you for sharing what you do for families on a death call. This is what we are about, to support, suggest, and guide families so a sacred memory is created. Blessings to you in the work you are doing. Barbara
Hi Joanna, Thank you for sharing what you do for families on a death call. This is what we are about, to support, suggest, and guide families so a sacred memory is created. Blessings to you in the work you are doing. Barbara
Jayne Reed
From the time the charge nurse determined that my mother had “begun her transition”, we had 24hr nursing support. The duty nurse explained everything to me as it was happening (I couldn’t sleep because I was afraid I would wake up and my mother would be gone.) The nurse even reminded me when to call the priest. We had VNSNY, and they were wonderful.
From the time the charge nurse determined that my mother had “begun her transition”, we had 24hr nursing support. The duty nurse explained everything to me as it was happening (I couldn’t sleep because I was afraid I would wake up and my mother would be gone.) The nurse even reminded me when to call the priest. We had VNSNY, and they were wonderful.
barbara
Hi Pat, the kind of care you and I have described is what I have always considered part of hospice care. That is why I was so surprised by the questions asked of me. Blessings to you in the work you are doing. Barbara
Hi Pat, the kind of care you and I have described is what I have always considered part of hospice care. That is why I was so surprised by the questions asked of me. Blessings to you in the work you are doing. Barbara
barbara
Hi Anne, thank you for sharing your experience with hospice with us. How special that these years later you are still in touch with the hospice. Blessings! Barbara
Hi Anne, thank you for sharing your experience with hospice with us. How special that these years later you are still in touch with the hospice. Blessings! Barbara
barbara
Hi Denise, thank you for sharing. Yes, this is what hospice does. Blessings to you in the work you are doing. Barbara
Hi Denise, thank you for sharing. Yes, this is what hospice does. Blessings to you in the work you are doing. Barbara
barbara
Hi Laura, thank you for sharing your hospice experience with me. I am so glad it was such a positive one. That is what hospice is suppose to be. Blessings to you. Barbara
Hi Laura, thank you for sharing your hospice experience with me. I am so glad it was such a positive one. That is what hospice is suppose to be. Blessings to you. Barbara
Joanna Tousignant
I am in shock I had no idea that any hospice did not respond at the time of death day or night
Isnt that what we are for to make a terrible time easier? I thought it was a requirement as well from Medicare but maybe not?
I have used your suggestions to fix the room make the bed etc and while Ive not heard back ever if it helped I can only imagine how I would feel and so i will still do it when I can, I usually am able to find a family memeber who is not in the heat of the grief or a close friend who is present who can point me to the trash can outside and I discreetly take things out as well as get the laundry if possible going in the washer with permission only of course. No one wants to walk into that room and see a mess ever after losing a loved one.
Thank you for your information
I am in shock I had no idea that any hospice did not respond at the time of death day or night
Isnt that what we are for to make a terrible time easier? I thought it was a requirement as well from Medicare but maybe not?
I have used your suggestions to fix the room make the bed etc and while Ive not heard back ever if it helped I can only imagine how I would feel and so i will still do it when I can, I usually am able to find a family memeber who is not in the heat of the grief or a close friend who is present who can point me to the trash can outside and I discreetly take things out as well as get the laundry if possible going in the washer with permission only of course. No one wants to walk into that room and see a mess ever after losing a loved one.
Thank you for your information
MARIA DMARCO
Thank you for your work, as always…
This person’s questions reminded me again of caring for my mom in her dying weeks.
The wonderful hospice worker I had by my side stayed with me (as the primary care giver) for the final 4 days – 24/7. She was like a family member. We traded sleep shifts sometimes, made each other meals, and tended my mom together.
She was also by my side when my mom prepared to leave, allowing me to call for my brother and his wife, who were sleeping in another part of the house. We all stood by her side, with our hospice ‘sister’ explaining and guiding us in helping my mom release. She encouraged us all to say what we wanted to say — and — what would probably be odd to others, she and I cheered and hugged and danced around when my mom finally slipped from her body. We kept cheering and shouting congratulations to her. It was wonderful —
My brother only felt sad – couldn’t envision our joy, but that’s okay.
My hospice partner then ushered us into the living room, adjacent to my mom’s bedroom, and my brother called the funeral home, who arrived an hour later. My hospice partner cleaned and arranged my mom, my brother left, the body left, and lastly, my partner left. I stayed in the house overnight, as I wanted to be certain my mom would be able to leave completely and be free.
So, there are still hospice workers devoted to staying and completing closure on each level.
Thank you for your work, as always…
This person’s questions reminded me again of caring for my mom in her dying weeks.
The wonderful hospice worker I had by my side stayed with me (as the primary care giver) for the final 4 days – 24/7. She was like a family member. We traded sleep shifts sometimes, made each other meals, and tended my mom together.
She was also by my side when my mom prepared to leave, allowing me to call for my brother and his wife, who were sleeping in another part of the house. We all stood by her side, with our hospice ‘sister’ explaining and guiding us in helping my mom release. She encouraged us all to say what we wanted to say — and — what would probably be odd to others, she and I cheered and hugged and danced around when my mom finally slipped from her body. We kept cheering and shouting congratulations to her. It was wonderful —
My brother only felt sad – couldn’t envision our joy, but that’s okay.
My hospice partner then ushered us into the living room, adjacent to my mom’s bedroom, and my brother called the funeral home, who arrived an hour later. My hospice partner cleaned and arranged my mom, my brother left, the body left, and lastly, my partner left. I stayed in the house overnight, as I wanted to be certain my mom would be able to leave completely and be free.
So, there are still hospice workers devoted to staying and completing closure on each level.
Pat
I am a Hospice Chaplain. We always have at least 2 RNs on call through the night and urge families to call us immediately when pt dies. RN arrives within the hour, provides emotional support, final cleansing, tidies room and when family is ready phones mortuary for pickup. He/she stays with family until mortuary departs from the home. Always. Unless family prefers otherwise.
I am a Hospice Chaplain. We always have at least 2 RNs on call through the night and urge families to call us immediately when pt dies. RN arrives within the hour, provides emotional support, final cleansing, tidies room and when family is ready phones mortuary for pickup. He/she stays with family until mortuary departs from the home. Always. Unless family prefers otherwise.
Joy McEwen
I agree with Barbara on everything the has said. This is how I was taught when I worked for Houston Hospice, as a field RN an in the Inpatient Unit. Best place I have ever worked in my career ❤️
I agree with Barbara on everything the has said. This is how I was taught when I worked for Houston Hospice, as a field RN an in the Inpatient Unit. Best place I have ever worked in my career ❤️
Anne
I had the most loving, caring HOV team when my husband died. Our nurse came as soon as Jim died. She stayed until the body was picked up. There was no hurry. I washed and sat with him before I called. I did not know he was dead until our hospice nurse pronounced him so. He was home with me. I took care of him for five years. We only had hospice for a few months! I still keep in touch with a few of the hospice team members. Jim passed in 2012. I treasure how they cared for not only my husband of forty years but also of me during those last months. Thank you for your selfless work. It is appreciated.
I had the most loving, caring HOV team when my husband died. Our nurse came as soon as Jim died. She stayed until the body was picked up. There was no hurry. I washed and sat with him before I called. I did not know he was dead until our hospice nurse pronounced him so. He was home with me. I took care of him for five years. We only had hospice for a few months! I still keep in touch with a few of the hospice team members. Jim passed in 2012. I treasure how they cared for not only my husband of forty years but also of me during those last months. Thank you for your selfless work. It is appreciated.
Denise Owen
I agree with you about everything. Attending deaths is what sets our Hospice, Amedisys Hospice, apart from many of our competitors. We may not be present at time of death, but we always make a pronouncement visit, frequently staying until the mortuary arrives. To me, that is just good practive.
I agree with you about everything. Attending deaths is what sets our Hospice, Amedisys Hospice, apart from many of our competitors. We may not be present at time of death, but we always make a pronouncement visit, frequently staying until the mortuary arrives. To me, that is just good practive.
Laura Jenkins
Thank you for this thoughtful post. We were very fortunate to have wonderful hospice care for my husband – though sadly only for about 12 hours because of his resistance. But the on-call hospice nurse who came after his death in the very early morning hours was everything I could have hoped for, and more. I particularly remember her gentle suggestion that my daughter and I might want to step out of the room while the funeral home staff were preparing to take his body. It is not something I would have thought of on my own, but showed great care for us so that our last image of him would not be potentially traumatic.
Thank you for this thoughtful post. We were very fortunate to have wonderful hospice care for my husband – though sadly only for about 12 hours because of his resistance. But the on-call hospice nurse who came after his death in the very early morning hours was everything I could have hoped for, and more. I particularly remember her gentle suggestion that my daughter and I might want to step out of the room while the funeral home staff were preparing to take his body. It is not something I would have thought of on my own, but showed great care for us so that our last image of him would not be potentially traumatic.