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

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. 😥

I don't think that "easier" is the best way to interpret the family member's anger. To me, it is the stage they are at. Sometimes they don't get past it and that is unfortunate and often makes the overall situation harder to work with, but I see their anger as part of a normal range of human emotions and I make sure to tell them this. Acknowledging and accepting the validity of their current state of emotions helps to create an atmosphere of trust and understanding, and that helps me to work with them and hopefully help them to move on in their grieving.

Specializes in hospice.

Anger is one of the stages of grief.....

Specializes in Post-Surgical, Med-Surg, Travel, Agency.

That was lovely. Thank you for posting. **Sniff**

This was beautiful.

It brought tears to my eyes. Thank you for sharing this touching story.

Specializes in Emergency Nursing.
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.

This is a great story, your message and choice of language created a really solid picture, at least in my mind. I agree with the user who suggested that it must be the family who brings up religion in these situations and I can appreciate that you were able to help them work through this with the use of their religion and beliefs (whether you shared those beliefs or not). I have worked with families of dying patients and when religion comes up I do my best to help support them using their belief symptom even if it is not one that I share.

!Chris :specs: