Dear Barbara, I am a hospice volunteer and am occasionally with a patient when family members are unavailable to be with a person as they near their death. Of course this is a sad situation for the dying person being alone as they leave this world. Sometimes I arrive to find that family members or friends have arrived. My question is, how can I best support these people at this highly emotional time. I generally let them know that we are there to help if needed and offer to sit in their place if they need to make phone calls or get something to eat. I remind them that they can always call if they need anything else. I then usually take my leave and give them their privacy. But I wonder if there is something else I should say or do that might help? Is it appropriate to ask about their dying relative? Is it helpful for them to speak about the person? Or is it better just to let the family be with their own thoughts?
When I was doing direct patient care in the '80s our hospice goal was to be with the family at the patient's moment of death. The hours before actual death is very scary, a "I don't know what to do" time, for anyone present. Someone who knows the normal natural way a person dies can be like a conductor as they guide those present through the experience. You being there with your knowledge of end of life can have a significant role in turning an often frightening time into a sacred one. So, yes, I think you should stay if people unexpectedly arrive. Explain that if it is alright you would like to stay and be of assistance. Most people will welcome your presence.
I would like to see hospice programs offer trained volunteers to every family, not just to those patient’s that have no family. The person who is actively dying is like a little chicken trying to get out of its shell, working very hard. They are so removed from their physical body that their attention is inward, not outward, so actually whether they are alone or have a room full of people isn't the important issue. The real need is to provide support to the family and significant others who are there with the person who is actively dying. It is those present that need guidance.
Even though the dying person is busy they can still hear so with that in mind here are some suggestions for working with the family:
* Explain to everyone about the “little chick” idea. This gives them a base line for understanding what is happening. You want them to know that nothing bad is occurring. This is how people die and their special person is doing a good job. I often explain the days to hours before death as labor, the labor that proceeds a birth into another world.
* Once you have neutralized the fear of what is happening suggest that each person there spend time alone, talking with the one dying. Life is full of positive and negative occurrences. The person who is dying is processing their life so help them by talking about the good and the difficult times.
* Help those present say goodbye. Because we have limited control over the time that we die suggest that the family tell their special person “when you are ready you can go”. This is not that it is okay but that there is an understanding that their person is leaving.
As I see how much I have written and how much more I have to say. I also realize I have already written a booklet with all of the information in it. I wrote The Eleventh Hour to give just this kind of knowledge to families and end of life helpers. Reading Gone From My Sight which explains the normal natural way that people die and The Eleventh Hour which offers ideas of what to do in the hours to minutes before death occurs gives a solid knowledge base on the end of life process.
13 comments
Diane
I wish that I had been more informed when my husband was actively dying. I knew that the end was near, just not so near. I would have liked to be in the room with him alone and held his hand and kissed him more. When I left him alone, that was when he passed. It was minutes after I left. AS soon as I got home the phone was ringing and the nurse informed me that he had died. It is so hard to think that had I stayed longer I would have been there with him. I did not want him to die alone.
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BK Books replied:
Diane, a person has limited control over the time that they die. Take the gift of protection your husband gave you. You might write him a letter and tell him your thoughts and feelings. Burn the letter and scatter the ashes to the wind. Let how well you live your life now be the gift you give him. Blessings, Barbara
I wish that I had been more informed when my husband was actively dying. I knew that the end was near, just not so near. I would have liked to be in the room with him alone and held his hand and kissed him more. When I left him alone, that was when he passed. It was minutes after I left. AS soon as I got home the phone was ringing and the nurse informed me that he had died. It is so hard to think that had I stayed longer I would have been there with him. I did not want him to die alone.
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BK Books replied:
Diane, a person has limited control over the time that they die. Take the gift of protection your husband gave you. You might write him a letter and tell him your thoughts and feelings. Burn the letter and scatter the ashes to the wind. Let how well you live your life now be the gift you give him. Blessings, Barbara
Barbara
Hi Sandi, great to hear from you. Thanks for the kind words. Speaking of your Stephen’s Ministry my DVD This Is How People Die would be a great education tool. If that is too expensive use New Rules For End of Life Care. Groups like yours is one of the reasons I did these two DVDs. Also the DVD You Need care Too is guidance for us workers who deal with end of life. We require some extra TLC. Education, Education, Education! We can’t have too much of it.
Thanks for touching base with me. Blessings to you and the good work you are doing. Barbara
Hi Sandi, great to hear from you. Thanks for the kind words. Speaking of your Stephen’s Ministry my DVD This Is How People Die would be a great education tool. If that is too expensive use New Rules For End of Life Care. Groups like yours is one of the reasons I did these two DVDs. Also the DVD You Need care Too is guidance for us workers who deal with end of life. We require some extra TLC. Education, Education, Education! We can’t have too much of it.
Thanks for touching base with me. Blessings to you and the good work you are doing. Barbara
Linda Eggleston
I am a Hospice Volunteer Coordinator, when training my Volunteers, as part of their assignments I have them read your booklet My Friend I Care, and Gone From My Sight., our Hospice has just started the No One Dies Alone program which I have 10 volunteers participating in .Your Eleventh Hour was so beneficial in our training, Thank you so much for such great information you have written
I am a Hospice Volunteer Coordinator, when training my Volunteers, as part of their assignments I have them read your booklet My Friend I Care, and Gone From My Sight., our Hospice has just started the No One Dies Alone program which I have 10 volunteers participating in .Your Eleventh Hour was so beneficial in our training, Thank you so much for such great information you have written
Nancy
I’ve been volunteering with respite care for about 10 years but when my spouse died, I had no idea what to do in his last hour. The hospice nurse was gentle and kind, letting me know I could talk to him since he could still hear me. This made his passing less hurtful for me.
I’ve been volunteering with respite care for about 10 years but when my spouse died, I had no idea what to do in his last hour. The hospice nurse was gentle and kind, letting me know I could talk to him since he could still hear me. This made his passing less hurtful for me.
Sandra Coleman, RN
Barbara- Thanks again for being you! You and Hospice have helped to normalize the death process by sharing your knowledge and understanding of this sacred time. I saw Joy a few weeks ago, and she is doing okay. What a blessing you have been to the health and wellness and ministry care areas . Our Stephens’ Ministry group certainly has benefited. Blessings!
Barbara- Thanks again for being you! You and Hospice have helped to normalize the death process by sharing your knowledge and understanding of this sacred time. I saw Joy a few weeks ago, and she is doing okay. What a blessing you have been to the health and wellness and ministry care areas . Our Stephens’ Ministry group certainly has benefited. Blessings!
Barbara
Mary, I am so sorry you had such an insensitive experience with hospice. Hospice is not suppose to be like that. At some point you might think of contacting the director of that particular hospice and recount your experience and how it made you feel. Maybe that knowledge will be used to educate the staff so other families will benefit from your unhelpful experience.
Again, I am sorry the last moments with your husband were marred by another’s thoughtlessness.
My blessings are with you and your family. Barbara
Mary, I am so sorry you had such an insensitive experience with hospice. Hospice is not suppose to be like that. At some point you might think of contacting the director of that particular hospice and recount your experience and how it made you feel. Maybe that knowledge will be used to educate the staff so other families will benefit from your unhelpful experience.
Again, I am sorry the last moments with your husband were marred by another’s thoughtlessness.
My blessings are with you and your family. Barbara
mary
Wish my experience had been good with Hospice. The worker just came in and took over the whole room. Spread her books out and took the space the family should have had to be alone with my husband. Did not offer any courtesy to us at all or to him. We were grieving and she did nothing to help.
Wish my experience had been good with Hospice. The worker just came in and took over the whole room. Spread her books out and took the space the family should have had to be alone with my husband. Did not offer any courtesy to us at all or to him. We were grieving and she did nothing to help.
Barbara
Hi Angie, you are so right, when families are under stress it can be their fineness moment of working together or the stress has them lashing out at each other and any one who is there. Those being there is generally us, the worker bees. Don’t take the outbursts personally. It has nothing to do with us. Be a listener, don’t take sides, and basically stay out of family feuds. As unpleasant as it is to be around these situations just remind yourself that nothing bad is happening. It is just family dealing with the stress of a loved one dying and the stress of being a family.
Blessing to you. Barbara
Hi Angie, you are so right, when families are under stress it can be their fineness moment of working together or the stress has them lashing out at each other and any one who is there. Those being there is generally us, the worker bees. Don’t take the outbursts personally. It has nothing to do with us. Be a listener, don’t take sides, and basically stay out of family feuds. As unpleasant as it is to be around these situations just remind yourself that nothing bad is happening. It is just family dealing with the stress of a loved one dying and the stress of being a family.
Blessing to you. Barbara
Susanne
After 20+ yearsas Home hospice RN and 9yrs of Palliative Care, and
1yr at In Patient Hospice retirement has shut me down @75yrs..My heart , my bliss is caring for these patients…Missing the caring and meeting the needs of families of the dying ……..
After 20+ yearsas Home hospice RN and 9yrs of Palliative Care, and
1yr at In Patient Hospice retirement has shut me down @75yrs..My heart , my bliss is caring for these patients…Missing the caring and meeting the needs of families of the dying ……..
Angie
I always read every note about the comments family and hospice angels leave at various sites. I always learn something new. One thing I haven’t read about and something we probably don’t want to discuss is the anger between family members and toward hospice caregivers. The rude comments are usually regarding “who” has been taking care of the patient as in who, how long, how much work, hours, etc. When this happens to me I just get very quite and let the comment go. When everyone is calm again just say something like if you want me to go I will, just let me know what you need from me and I will be here as long as needed. Most family members don’t know what to do or say when the loved one is dying. I usually have my Bible and say something like, you can read the Bible to her or him if you want to.
I always read every note about the comments family and hospice angels leave at various sites. I always learn something new. One thing I haven’t read about and something we probably don’t want to discuss is the anger between family members and toward hospice caregivers. The rude comments are usually regarding “who” has been taking care of the patient as in who, how long, how much work, hours, etc. When this happens to me I just get very quite and let the comment go. When everyone is calm again just say something like if you want me to go I will, just let me know what you need from me and I will be here as long as needed. Most family members don’t know what to do or say when the loved one is dying. I usually have my Bible and say something like, you can read the Bible to her or him if you want to.
Janet Odom
Jeff Snyder
On June 28th of 2017 my wife passed away in Hospice at St Vincent Hospital Little Rock Arkansas. We were married for almost 34 years I cannot put into words the love and friendship we had and I miss her.
The Hospice Friends that helped us understand what was going on and the care they gave my wife was way beyond what I could have done at home.
These God sent people are the best of the medical field They are there for the family as well as the patient I’ll never forget the way they treated us all during the time we were there. They will always have my gratitude. They also have kept up with me for the last year to make sure I’m doing ok. There are Angles who walk among us.
On June 28th of 2017 my wife passed away in Hospice at St Vincent Hospital Little Rock Arkansas. We were married for almost 34 years I cannot put into words the love and friendship we had and I miss her.
The Hospice Friends that helped us understand what was going on and the care they gave my wife was way beyond what I could have done at home.
These God sent people are the best of the medical field They are there for the family as well as the patient I’ll never forget the way they treated us all during the time we were there. They will always have my gratitude. They also have kept up with me for the last year to make sure I’m doing ok. There are Angles who walk among us.
Jayne Reed
Two specific things the home hospice nurse said that were very helpful in my mother’s last hours:
1. “When is the priest coming? I think she’s waiting for him..” I called him, and he was there in time to give her last rites with all of us there.
2. We were looking at old pictures and getting a bit noisy; the hospice nurse gently told us that we were disturbing her process, as she could hear us. So, remembering that my mother had always said that she wanted the Rosary said at her funeral, we put on a tape of the Rosary with music, and we prayed along. She faded out with the last Hail Marys.
I can’t repeat enough times that having the guidance of a “death doula” in those hours was invaluable.
Two specific things the home hospice nurse said that were very helpful in my mother’s last hours:
1. “When is the priest coming? I think she’s waiting for him..” I called him, and he was there in time to give her last rites with all of us there.
2. We were looking at old pictures and getting a bit noisy; the hospice nurse gently told us that we were disturbing her process, as she could hear us. So, remembering that my mother had always said that she wanted the Rosary said at her funeral, we put on a tape of the Rosary with music, and we prayed along. She faded out with the last Hail Marys.
I can’t repeat enough times that having the guidance of a “death doula” in those hours was invaluable.