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As Death Gets Closer: The Last Days and Hours at Hospice

(Dorann Weber / Getty Images)

"I'm honored to stand witness to those intimate, vulnerable moments."

Sometimes in my work as a certified nursing assistant at Zen Hospice Project’s Guest House, I am with a resident in the moment when he or she recognizes there is tangible evidence that they are getting closer to death. I watch people lose their ability to walk, to speak, to swallow, and to move at all as death gets closer. Most of us take these abilities for granted all our lives, and it can come as a very heavy blow to lose them. Witnessing these kinds of losses over and over again humbles me and awakens my gratitude for my own body’s current relative health, knowing that one day I too will lose control of my body functions one way or another.

The other night, I was assisting a resident at the Guest House at the moment when he became incontinent for the first time. I was supporting him while he stood unsteadily, when suddenly he urinated all over himself and the floor. He stood silent, too weak to do anything but hang on to the railing while I cleaned him up. He stayed silent when I dressed him in an incontinence brief, his eyes heavy-lidded and wet. In a soft voice, he thanked me as I helped him back into bed where he curled up in a ball and dropped into the murky fathoms of not-asleep/not-awake. After sixty-something years of being able to control his bladder, this man now had to wear adult diapers. I can only imagine what it’s like to lose such a basic human ability.

In these moments of recognizing a resident’s loss of ability, and oftentimes loss of dignity, as they get closer to death, I do my best to relax my body and quietly let my heart be there for that person — without making a fuss and without pushing away the reality of the moment. I am present with what is happening in quiet care and respect. I stand witness to that body in its process of shutting down; I stand witness to that heart in its loss and sadness; and I am honored to be there for those intimate and vulnerable moments of letting go of life.

Recently, a woman at the Guest House in her early 60s was moving closer to death in substantial pain and discomfort; medication was not able to control her constantly increasing pain. Her devoted daughters did most of the caregiving for her, tireless in their bedside vigil. Despite her terrible pain, her belly swollen with cancer and unprocessed fluid, and large areas of purple bruising due to capillaries breaking down covering her torso, this woman would always smile and express her gratitude when she had moments of consciousness. She had already lost her abilities to move much or speak, and on what was to be her last day, she lost her ability to swallow.

This is always a significant landmark as it means no more eating or taking in fluids (if residents haven’t stopped doing that already), and it means no more taking medication by mouth. At this stage at the end of life, there are adhesive patches and rectal catheters to deliver medications as well as liquid meds that can be absorbed in the side of the mouth without swallowing. For this woman, we placed a rectal catheter because she needed pain medication so frequently.

One afternoon, a few hours before she died, her pain had broken through yet again. This time, as we removed her incontinence brief to give her medications through the rectal catheter, we saw that she was having flooding diarrhea through the catheter, so we could not give her medication that way. She lay there moaning in pain, her daughter at her side quietly suffering heartbreak and anxiety, as diarrhea leaked from the tube all over the bedding. In this devastating moment, the nurse and I had to remain calm and figure out how to handle these multiple problems as swiftly and sensitively as possible.

The anguish of this moment enveloped us all; I allowed room for it in myself even as I took careful action. I stayed close to the whole experience, pushing none of it away, present to all the emotional and logistical realities, and letting my own sense of despair rest quietly in my heart. It took time and delicate work, yet we managed to get some liquid morphine into her mouth and gently cleaned her and changed the bedding, all of us feeling the nearness of her death.

In the next couple of hours, as her death drew closer, her breathing changed, a shallow gulping in-breath followed by a soft moan with every decreasing exhale. We attempted to give her more medication through the rectal catheter, and again her body, so close to death, was fully letting go, completely releasing all the fluid in her bowels. Recognizing that she was in the stage of active dying, I called the daughter aside and softly told her that her mother was likely within minutes of death.  The daughter, who had been tending to her mother with such close attention and care quietly said, “I know.” I suggested that she invite the rest of the family to be with her in her final moments.

The family stood around her bed, holding her hands, occasionally speaking quietly to her. As her death got even closer, she became more at ease, with each softer, shallower breath, her body and face relaxed. In my experience, when death is this close, no matter how difficult the pain and agitation of the previous hours, days and weeks had been, people are often (not always) peaceful in their final breaths. As we watched her long-suffering body gently stop, a subtle yet profound stillness settled in the room. Her family’s response was muted, probably caught between acceptance and disbelief, between relief and paralyzing sorrow. The nurse and I allowed our tears to run down our faces.

As death gets closer, we lose all that we have cherished; life-long abilities and identities all fall away. Being present with people as they lose everything continually awakens me to the undeniable reality that this will happen to me too, to all of us. This fuels my deep appreciation for what I have now and prepares me to let go when the time comes. It is an honor to experience this truth so intimately. It is an honor to practice living and dying mindfully and compassionately with each person I care for here at the Guest House of Zen Hospice Project.


Learn more about how Zen Hospice Project is helping to change the experience of dying.