Accusing Hospice is a story about an encounter between a hospice nurse and a family dealing with the impending loss of their loved one. It describes the importance of allowing for and addressing hard questions.
“While I was still in prayer, Gabriel, the man I had seen in the earlier vision, came to me in swift flight…He instructed me and said to me, ‘Daniel, I have now come to give you insight and understanding. As soon as you began to pray, an answer was given, which I have come to tell you, for you are highly esteemed.’” Daniel 9:21-23.
We sit across from each other; the two daughters and their father sit together on the sofa, and I am in a straight chair across from them. I feel that the positioning is awkward and strained because, truly, I am on their side, trying to help them through this uncharted course of the death of their beloved mother and wife, who lies in a bed a room away physically, a world away spiritually —her mind long gone on to a better place, full of sunshine, color, flowers and peace—her body left to deal with residual functions, slowly grinding to a halt.
The middle daughter, both on the couch and in birth order, speaks, her words tortured as they make their debut into the conversation, “How can hospice come in here and give her all these drugs so that she is out of it? She might get better if she could just wake up!” The father and the sister, cross their arms in unison, building their defenses against the accusation that they misread the signs of impending death and acted too hastily.
I glance out the window, briefly taking note of the chilly wind whipping up the lake outside, as I lean forward in my straight chair and consciously open my hands, palms up, to show my intention to listen carefully, to withhold judgment, to be empathetic. The woman’s words betray a possible sense of guilt over the geographic impediment to her own involvement in care. I hear her grief squeaking through the doorway of longing and desire to see her mother whole again.
The three loved ones sit, side by side but ill at ease, as I open with words of welcome to the questions, now spoken and lying in wait about the room.We discuss the role of hospice: to come alongside patients and their loved ones during the process of dying, to ease symptoms but not to do anything that hastens death. We give voice to the beauty of dying with comfort and dignity, and to the rewards of knowing that they have done their best to honor the wishes of the woman who nurtured them.
The daughter continues to speak with an outpouring of pent up agonies, twisting her blue necklace into a knot that matches the color of her eyes, “Why aren’t we feeding her? I think she would eat if we put it in her mouth. Won’t she be in pain if she dies of hunger?” Tears well up, held in check only by the tension that pushes itself through her hands into the helpless necklace, now wound up in a lump against her throat.
Gently, using soothing tones but in a voice loud enough for the failing ears of her father, I talk about the unfortunate progression of Alzheimer’s Disease, a disease that steals away, piecemeal, first the mind, then the body of its victims. We discuss the mother’s recent falls, lack of appetite, vacancy of her eyes, incontinence and difficulty in swallowing. We focus also on how beautiful it is that they are able to uphold the mother’s wish to not have her life prolonged by any artificial means, a wish spelled out long ago in an advance directive that stands now as a sentinel during difficult days of darkness.
We talk about God’s plan for bringing new life into this world—birth as a natural but sometimes difficult process that welcomes new life. And so it can be with death; when medical science has exhausted its ability to help the patient continue to live a meaningful life, when the body lives on but is a cocoon that no longer holds the spirit; then the time to allow for release comes. Our privilege as hospice nurses is to tenderly practice our brand of midwifery—managing symptoms, easing the pain, providing the physical care to promote comfort.
The rubber band of tension eases in the room as tears spill out to join the necklace, now lying loose in her lap, a pile of blue stones, worry beads set free from their duty. Sisters’ hands reach for one another. Their father clears his throat, trying to ease the pressure behind the dam of grief that he holds in check, fearful that a breach will never be contained.
We stand together, words of thanks exchange among us, and we move to the bedside where we offer a prayer for peace, peace for her and for them. Outside, the wind settles some of its fierce blowing, and the lake turns to glass.
March '15Mar 22, '15That last paragraph gave me goosebumps. What a beautiful piece. Thank you for sharing this experience with us.Mar 24, '15Quote from No Stars In My EyesI have delivered a few babies with my own two hands. I most definitely agree with this sentiment.I really liked the image of the hospice nurse as midwife for the last stage of life.Mar 24, '15This post touches my heartstrings. I have lost a few relatives and friends and am now on my way to home health. Thank you so much for sharing with us.Mar 25, '15I have been on both sides of this coin. My family members couldn't handle the change of not being in control. They used the nurse as the cause of change and released their anger on her. I felt sorry for the nurse. Then while in school I chose to shadow a hospice nurse I had way more empathy for the whole situation because of my experience with death. I think seeing death in my family makes me a better nurseMar 25, '15We bring our personal life experiences with us to work, don't we? I think one of the keys to being successful nurses is to to let these experiences inform and enrich our professional lives, without allowing our emotions to dictate our responses. It's a balance that we seek on a daily basis, isn't it?Mar 25, '15Yes, this is hospice nursing. In my case, with or without the actual verbal prayer, the care itself is unceasing prayer.
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