Questions at End of Life

While working hospice last week, I was so strongly reminded of a former patient from years ago that I came home and looked at my journal (password protected, no names) to revisit my entries about this remarkable woman.

“Tracy” was one of the most direct people I ever met. As she said from day one with hospice, she tolerated no bullshit. Tracy did not want a nurse who was going to be sweet and soft-spoken. She wanted her entire hospice team (nurse, social worker, chaplain, bath aids)  to “tell it like it is.”

What made her even more unique than the characteristic of being blunt and forcing others to be as well, was the way she wanted to share her thoughts on dying. She asked many questions of myself and the chaplain that, truthfully were difficult or impossible to answer. But, how thought-provoking the visits were. And her sense of humor!

“Lisa,” she asked, “What will happen when I die? What will it feel like? Do you think I’ll know the moment I die that I’m dying? Does my soul immediately vanish do you think?

“Do you think I’ll have the ability to come back and help my brother handle all this shit? I don’t have faith that he can really do it. Do you think as a ghost I could help him file my taxes?”

“Will I really see people who have died before me when I’m dying? That just sounds horrible because I don’t really like most of my family members who are dead. Besides, what business is it to them that I’m dying?”

During my next visit...

“Lisa, how much longer until I die?”

“Why haven’t I died yet? Will you pray for me to die? I don’t care who you pray to, but will you pray to someone to let me die?”

“I will.” I honestly answered.

“Lisa, will you pray harder, because I’m still here. I think you may need to try praying to a different God, because that one isn’t listening.

Another two weeks slowly went by...

“Jesus, Lisa! You are terrible at praying for people to die because I’m still here and it’s been so very long.. Let’s call that chaplain again. I think she has a more direct route to God than you do.”

The chaplain paid a visit. Tracy continued to contemplate her death, the afterlife, and why she was still living.

--Not surprising, Tracy was alert until the very end. She stayed alive until the day we were able to find someone willing to adopt her four dogs together. That was the night she died -  with her dogs lying beside her in her hospital bed.

It’s not difficult to talk through the physical disease and dying process. We have booklets like “Gone From My Sight: They Dying Experience” by Barbara Karnes, RN, that we use with our hospice patients and families. After fifteen years of medical social work, I feel confident in my ability to directly discuss end of life symptoms.

Tracy was interested in knowing what would happen to her body. What her death would most likely look like. She wanted to know everything in hopes that it would give her some sort of control over her dying process. It was infuriating to her that when she felt ready to die, her body didn’t just die. Her existential suffering became greater as she became aware that she could not control her dying process.

The chaplain and I made frequent visits to support Tracy, together and separately. We didn’t attempt to answer these existential questions for her, but rather we created space for these questions to be spoken aloud. We sat with her as she attempted to reconcile her beliefs and as she prayed for God to take her. These moments were filled with anguish and uncertainty. But, yet, there was beauty in the shared experience and in the vulnerability of us all as we spoke of things so large and infinite.

We cannot resolve suffering of another, but we can ease their way.