When Hospice Patients Die Alone: Worst-Case Scenario or Their Choice?
I was sitting with my hospice patient just an hour before she died. She was experiencing what we in hospice call a “terminal event.” She was not dying from her hospice diagnosis, but from a complication caused by her hospice diagnosis; in this case it was likely an internal hemorrhage, but we won't ever know for sure. While I sat with her, I gently said, “You will likely die from this. Can I call your friends to be with you right now?” and she definitively shook her head “No.” She died with me and the CNA sitting next to her 45 minutes later.
Usually when patients are in the active state of dying, they are unresponsive, but like this gal, I have had many patients who were alert at the very end of their life and told me, “No,” when I posed the question, “Can I call your family?”
And listen, as a hospice nurse, it is a difficult decision because we are the ones who have to support the family after they walk into the hospice home and find their loved one has died without a family member present. This grief is unbearable to be around–it is grief that is filled with heavy regret, misery, heartache, what-ifs, and self-flagellation. It is the grief that brings people to their knees right at your feet when you utter the words, “I'm sorry, he just died moments ago.”
“Kindness and mercy are soothing medicines in the room of regret. Forgiveness cannot be willed. When our regrets are polished by self-compassion, they soften and release the life trapped inside.”
—-Francis Weller, The Wild Edge of Sorrow.
As a hospice nurse, my most pressing goal is to gather family and friends for the moment of death so my patients can be surrounded with blessings and love as they exit this physical plane. I have realized over time that my own lofty goals for the kind of hospice nurse I want to be may conflict with my patients’ goals. This can compromise my ability to drop in with emotional presence. Once I learned to get out of my own way, I could honor a patient’s request with reverence.
I have certainly had hundreds of patients who simply died in the night or died quickly without our knowing until we checked on them and they were not breathing. This is the worst kind of surprise for a hospice nurse. But it happens. Too often. And we are a 24-7 facility, with nurses and CNAs awake in the middle of the night, getting paid for rounding on our patients and vigilantly watching for signs of impending death.
I have also witnessed a patient suddenly shift into the actively dying state as soon as the family leaves for breakfast or to take a shower or to have a smoke. I have seen it too many times to think it is random. I talk more about this in my blogpost Missing the Moment of Death.
When I ponder why my patients refuse family or friends to sit at their bedside, I have some thoughts–nothing that is grounded in research or statistics. And I have never outright asked my patient, “Why?” because it feels that this simple question is riddled with judgment. Here are my thoughts:
If you have never been around a death, it can sometimes be distressing or appear distressing. The patient may want to be alone for this process.
In the active state of dying, the veil is thin. The patient seems to move back and forth between this earthly plane and the next mystery. Sometimes it appears jarring to the patient to be pulled back into this earthly state. They may want to drift there and stay there and come back when they are ready.
Most humans are not very grounded when they lose someone they love. This could be hard for the dying person.
It may be impossible to let go when your loved ones are sitting next to you weeping, telling you to breathe when you experience the normal apnea, or gripping your arm.
Perhaps the dying are protecting their loved ones.
I write this blog post because I want those who are left behind, those who miss the moment of death, to give themselves some grace and space. Dying is this mystical divine event, and the mystery of life continues even in death. I will always have the goal of gathering family and friends for this beautiful sacred moment of death, but my higher priority is to honor my patient if their literal last dying wish is, “Please let me do this alone.”
Buy my book if you are caring for a loved one who is dying.
Writer’s note: Because of privacy laws, the subject of this story is not an actual patient, but a story that includes a combination of many patients and scenarios over my 18 years of hospice nursing.
Blessings