Accusing Hospice

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. Specialties Hospice Article

"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.

Joy Eastridge

Yes, this is hospice nursing. In my case, with or without the actual verbal prayer, the care itself is unceasing prayer.

Specializes in med-surg, mother-baby, teaching, peds.

I know someone at 92 who is at end stages of vascular dementia and so I understand from an emotional standpoint both sides of this very creatively composed story. Interestingly enough, it is some of the nurses who are caring for this woman are having a hard time with letting her go. They will wake her up to try and feed her three meals a day but she is having a hard time swallowing at points and one never knows when this issue will come up so why take the chance on having her choke to death or get aspiration pneumonia. She is being advocated for this with the staff but the social worker mentioned though she is on hospice care, because she is not in a hospice place, the staff are not as attuned to this. She does not acclimate to new environments well. An in-service is desperately needed here.

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I see this all the time with family and with nurses caring for the patient. I believe this stems from many different reasons including the lack of hospice training in nursing school programs as well as general attitudes and beliefs of society in general.

This is eloquently and beautifully written. Thank you so much for sharing. You summed up what I encounter very often myself. Love helping my patients in their last stage of life. Such an honor and a privelage. #hospicenurse #heavenswaitingroom

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My mother died of Alzheimer's disease, and sometimes I could see in her eyes that she was "home," and other times there was no one there that I recognized. But she was a very intelligent, articulate woman, and I know she was so frustrated by not being able to communicate when she was "home." We were kind of relieved when she passed, although my sister was there with me when she went, and kept asking "what should we do?" and I kept having to remind her that we were to just let her go. My mom had always expressed that she wanted nothing done, but it was still hard for my sister. You expressed the emotions very well. Alzheimer's disease is SO terrible, and it runs in my family. I unfortunately know my fate......

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What a beautifully-written article.

Specializes in Faith Community Nurse (FCN).

MSNce1--I appreciate your comments. The discussion about feeding--what, when, how much--is a hard one. You will likely find voices all over the spectrum on this. In our hospice, we try to advocate for allowing the patient to guide the way: food for taste, for comfort. Being patient and family centered, we want to listen, to see what path leads to the greatest comfort and peace during a difficult time.

Specializes in Faith Community Nurse (FCN).

Areensee-- Just as we are all unique creations, I find we come to a time of parting, to death, with widely differing perspectives. Do you agree? It is our privilege in hospice, to help the patient, family and friends find some common ground to stand on.

Specializes in Brain Illnesses.

I do hope it was the family who introduced religion or religious viewpoint into this. If any of my relatives were to encounter someone talking about "gods plan" or any of that, they would have to go through the process of firing the hospice and finding another one. We're NURSES - not preachers.

Specializes in Faith Community Nurse (FCN).

You make a good point. I did not include much background in this story, but I knew the family well and knew that they were Christians. It is critical that as professional nurses, we listen carefully and always show the upmost respect for religious beliefs or choices not to have religious beliefs. You are so right--the family is the one to introduce religion. Our job is to discern where they are coming from and support them right where they are--not where we are. Thank you for your important observation.

Specializes in medical.

I am a hospice RN and do a fair amount of teaching concerning the dying process and the lack of need for food, drink and iv fluids. Often the family member becomes angry and disbelieving about this. I guess it is easier to be angry than to accept your loved one is really going to die and soon. 😥

Specializes in Faith Community Nurse (FCN).
I am a hospice RN and do a fair amount of teaching concerning the dying process and the lack of need for food, drink and iv fluids. Often the family member becomes angry and disbelieving about this. I guess it is easier to be angry than to accept your loved one is really going to die and soon. ������

You are so right. And I find that my job as a hospice nurse is to set aside my own natural reactions and to see beyond the patient's and family's initial response. Instead, I try to acknowledge the underlying grief and loss, and to respond with patience and kindness, allowing them the time they need to process the changes involved.