1. Anne Miller, Julie BSN, RN, CCRN


Negotiating differing views on when to transition a patient from critical to hospice care.


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I have just arrived to work in the ICU and am assigned a patient in respiratory distress. Her name is Darlene and her husband Tom is pacing the room. Within 10 minutes, he drinks three cups of coffee, ignoring the cot provided by the previous nurse so he could sleep next to Darlene. His wife has more than one cancer and both are growing. She left the hospital a week ago for hospice care, but has been readmitted after a decision by her husband to reattempt curative treatment.

Figure. Illustration... - Click to enlarge in new window Illustration by McClain Moore.

In the ICU, we are experts at monitoring for physiologic deterioration. Within an hour, I notice considerable changes in Darlene's breathing, oxygenation, and comfort. She looks as though she will die tonight. I page the on-call physician, who has written orders to maintain oxygen saturation levels and give routine oral medications but has not prescribed adequate palliative medications.


I have encountered physicians who avoid discussions of hospice care, but tonight I am lucky to have Dr. Elsey. It is clear he would like to make her comfortable as well. He discusses with Tom progression of care and the discomfort associated with mechanical ventilation. He describes the medications typically used to make patients comfortable as they die.


When he asks Tom about changing the goals of care from oxygenation to comfort, Tom wants to know why her oxygenation will not improve.


"Can we try a diuretic?" he asks. "Can we give the antibiotics more time to work?"


Dr. Elsey explains that her cancer is causing her hypoxia and will not get better, that the diuretics and antibiotics ordered by the previous physician will not be helpful. Tom has been banking on the treatments the admitting physician had prescribed.


"If all you want to do for her is give her morphine and keep her asleep, you're fired as our doctor," says Tom. Having failed to change Darlene's care plan, Dr. Elsey leaves. Darlene hasn't woken up to relay her wishes.


I like to be involved in these conversations, but during the process of increasing her oxygen flows, I've already said everything that I feel might be helpful. After Dr. Elsey leaves, I'm again caught in the terrible position of trying to decide how I can both be an advocate for my suffering patient and continue to adhere to the current care plan.


Do I try to feed her the ordered oral medications that won't help her? Can I give her water when she asks for it even though it might go into her lungs and worsen her breathing? Do I call the physician back as her oxygen level continues to decrease and I can't give her any more oxygen? Do I allow her to be poked for blood samples? These questions linger through my shift, forcing me to question what's appropriate for a patient who is dying and uncomfortable but has ICU standard treatments ordered and a husband denying her prognosis.


Later in the night, Darlene wakes with shortness of breath and back pain, forcing out the words, "I can't breathe, I can't breathe!" I want to give her pain medicine to help the back pain and help her rest calmly again. I rush to get the medication, but when I return Tom says, "I don't want her to have that. I don't want her to be asleep. She needs to be awake so she can breathe better."


I look at Darlene's frightened, pained face. I watch her move restlessly. Tom might have his own goals for Darlene, but it is clear she is in terrible discomfort, and I can't refuse to help her. I give her the pain medicine and soon she is feeling somewhat better. Tom is visibly unhappy. I feel bad about this, but I don't want the last moments of her life to be filled with harsh-toned conversations, anxiety, and pain.


I ask her, "What can I do for you?" She wants to sit in a chair. I gently move her from the bed to a recliner chair and cover her with a blanket from home. I wet her lips and put ChapStick on the parts that are cracked and painful. I put pillows under her arms and legs and ask more than once if she feels comfortable. When I offer to play music, Darlene and Tom (surprisingly) accept. I do every intervention I can without compromising the physician-ordered care. I still feel like I haven't done enough.


The next day, I learn that Tom had approved a comfort care plan and the patient had moved from the ICU and died. The day nurse says she feels "he just needed time." After his decision, the patient's care and interventions had become logical, harmonious, and intuitive. But this will not be the last time I have to perform the balancing act.