Do Families Want Hospice Present During The Death?

Recently I have been hearing discussion of why families and significant others do not want hospice or EOL Doulas with them during the final moments of life. Families often do not want anyone with them as their special person is actively dying. That is alone, private time. Anyone else present is an intrusion, an invasion of privacy.

My two cents: Yes, some may think it is a very private moment and do not want to share it with "strangers." HOWEVER, most people don’t understand how death happens. They don’t understand how people die. Movies tend to be today’s role model and that is not how death comes. So, most people don’t know what they are getting into when they say they want to be alone.

Education about what dying is going to look like is paramount for us end of life workers. This is the most important thing we give to families and significant others.?We need to explain the way most people die — especially the not-so-pretty parts. This includes the sounds, movements, pees, poops, frowns, grimaces, and the struggles that accompany approaching death.

After the "talk," offer to be a presence with them -- at that point it is their choice. Explain how you can guide and support everyone during this special time. You can be quiet & unseen, or have more of a presence if that is wanted. You can be a quiet "conductor."

If after you have explained what will occur and your offer is not accepted, know you have done your job. You have educated and offered support.

Don’t just assume a family wants to be alone. Most families welcome the support and guidance of a professional being with them.

Part of end of life work is to develop a relationship with the patient and family. Work with the dying is more about the emotional connection from which trust can develop than just meeting the physical needs of the patient.? When hospice sends a different nurse, home health aide, social worker, or chaplain on every visit, a bond and trust is not established. A huge part of end of life work is creating a connection and trust during a very emotional time in the family's and patient's lives.

A side note: when my husband was dying last year, my hospice nurse was present. She was invisible but present. She was a great "security blanket"?for us even though I knew everything that was going to happen. I had no fear and I had the knowledge. BUT my husband was dying and Stephanie’s presence was a great comfort.

I believe that most families, when death has come, appreciate the knowing presence that end of life workers bring.

Something more… about Do Families Want Hospice Present During The Death?

If you are caring for a special person who is approaching death, I believe that my guidebook can be a huge support. The specific knowledge and guidance it gives won’t take away the sadness you carry, but it will give you the confidence to know that you are providing the best care possible. By Your Side: A Guide for Caring for the Dying at Home