Her niece met me at the door and whispered conspiratorially, "Don't use the word 'hospice.' I'm afraid it will make her give up." As she ushered me down the long hall to the dark room shut off from the world outside by long curtains that resolutely refused to let in a glimmer of light, I considered my response and my approach to discussing end of life issues with both the niece and her aunt.
Already confined to her bed, Laura* rested with eyes closed and sunken into her wrinkled face. I noted the labored breathing, the grunting expirations, the oxygen cannula. I gently touched her hand and wrist taking a brief count of her skipping heart rate, the result of an overworked, weary, aging heart. In the background, the drone of the concentrator made her whispered answers to my questions hard to hear. I leaned in close to catch her efforts at single word responses, trying to assess her current level of consciousness and her ability to participate in our discussion.
She was alert at intervals, slipping in and out of consciousness as her intake of oxygen fluctuated below the level needed to keep her fully with us. "She is not eating any more," her niece told me, "and I can barely get her to drink."
I asked the patient about pain and she was able to tell me of shoulders that ached, but mostly, she fought to breathe and begged for relief with eyes growing dull and dim.
I talked with them about medicines that could help Laura with her shortness of breath and about ways we could work together to decrease her clearly visible anxiety.
The niece slipped away to talk with the social worker in the other room, leaving us alone. While I busied myself with the steps of the assessment process, I asked a few questions, hoping to open the door of communication between us. She clarified that this was her home and that she had lived here "a long time."
Quietly, I listened to lungs, felt for pulses, asked about bodily functions, making mental notes about swollen feet and dusky fingernails. All the while, Laura maintained that one position in the bed that maximized her ability to breathe. I asked her about how long she had been struggling with lung disease and her responses became vague; time seemed to narrow down, almost like pinpoint pupils, focused on the here and now, in and out, the next breath. of. air.
I noticed the slight bulge of a pacemaker in her left chest wall and asked her about that. She told me she had an implanted defibrillator; again, she was unsure about how long it had been there. It was the opening to talk about end of life. "Laura," I began, "How do you feel about turning off your defibrillator so that if your heart stops beating, you can just go on?"
She nodded yes, and I went on to discuss other important topics related to her wishes at the end of life, including comfort measures and non interventional care based at home which would be focused more on helping make every day as good a day as it could be, without worrying so much about numbers of days. She nodded her consent and dropped out of conversation, closing her eyes to signal that she was done and that I should move on and leave her to catch her breath.
In the other room, the social worker continued to discuss hospice in general with the family. I joined their conversation and the niece worriedly asked me, "What did she say?" as if by bringing in hospice, she were betraying her aunt.
I told her that we had discussed a Do Not Resuscitate Order, Comfort Measures and end of life issues, but that I had not specifically used the word "hospice." The niece let out a sigh of relief and a small smile replaced the worried line of her lips pressed together.
As the admission progressed, I wondered about the wisdom of not using the word "hospice." Is it helpful in the initial stages to not use the word or is it better to forge ahead, putting it out there for everyone in the family to know and handle in their own way? I decided that the burden remains with the professional hospice nurse, to make the decisions at hand as clear as possible, whether or not the actual word "hospice" is used.
I felt confident that Laura could see clearly what this new nurse was all about and what my coming represented. I could tell that she understood the significance of the end of life questions. She knew, in her heart of hearts, that her lungs were slowly clamping down and stiffening up. Already having refused to go the hospital multiple times, Laura seemed at peace with the alternative of receiving comfort care in her own home, surrounded by loved ones. Whether named or not, hospice services can provide consolation and a sweet release from striving and pushing forward when death is imminent and goals change.
Before I left, I went back to the room to say goodbye to Laura. I adjusted her covers, hoping to help her get more comfortable; then I reached up to straighten a curtain that had been jostled by the movement of the blanket. When I did, a single small shaft of light lit up the room.
Joy Eastridge
4/11/15
*Name changed to protect privacy.
