I had an experience last week at the in-hospital hospice where I volunteer that has left me wondering deeply about the roles of volunteers, patients, family members and hospice nurses in end of life care-taking.
Because I visit only once a week and the stay of patients there tends to be quite short, there is little continuity to my visits. I don't often see the same patients and their families more than once or twice. While there are 18 beds, the number of weekly deaths is high enough to render most rooms with new patients and emotional situations each week; I approach the rooms seldom knowing who is in them -- beyond their name -- or what the emotional situation is -- beyond brief notes in the volunteer book.
I am a volunteer and I often find myself saying that I am just a volunteer. My role is to be whatever the family members need, to fetch water or coffee for them, to run to the pharmacy for the nurses, to sit by the beds of the dying so that they are not alone; whether they know they are alone or not is often outside our realm of understanding. It is not uncommon for patients and their families to see me as another channel of communication for needs. They will ask me to call the nurse, ask if they can see a doctor, tell me what they think a patient needs. But the culture on the floor is -- necessarily -- that I shouldn't intervene with the care the nurses provide and should not undermine their treatment. I respect this and try to defer requests unless they are pressing or necessary. I try to be a helpful presence, not a factor.
I usually enter a room, introduce myself, ask the patient or family if I can sit with them, see if they are willing to chat, or I simply act as quiet company to them.
When I arrived at the hospice last week, it was for a new evening shift; my schedule had been changed to accommodate my weekly engagements and those of the hospice. I immediately noted, with some dismay, that a nurse I found to be gruff and dismissive during prior encounters was on duty. I respect her -- she has apparently been working on the floor for some many years -- but I distinctly felt that her view of volunteers was that we were meddlesome and in the way. And in my new role, I often agree with her, wondering what I am supposed to be doing.
I began to make visits to the rooms; the equivalent of knocking on doors in a neighborhood, not knowing what one is to ask or find. I heard a respirator running it's mechanical in-and-out cycle before entering one room; I've learned that respirators in a hospice ward can mean very few things: a young patient who was resuscitated but will not survive; or a family that still hopes against odds for their loved one to survive, for instance. When I entered the room, a woman, clearly once attractive but now quite haggard, sat on the edge of her chair next to the bed, her eyes wide in something like shock, her body poised in agitation, her hands never still. I introduced myself and asked if I could stay with her for a little while. She said nothing but shook her head slightly.
Because there was no other chair, I got down on my haunches against the wall beside her chair. "He looks very calm," I told her. She directed her blank and pained stare to me.
"Is the respirator bad?" she asked me. Immediately I knew I was over my head. I didn't know the patient's diagnosis (though he was in a hospice ward) nor the history of how he got there. I asked her when they arrived. That afternoon.
"Are there many respirators here?" she asked again, her numb face fixed on me.
"Respirators are not uncommon," I told her. She looked at her husband, a large man who filled his bed from side to side, the bulk of his large body slightly shaking with each pump of the mechanical machine that blocked a hole in his throat. His face had fallen, his jaw hanged open, his eyes were still behind the lids.
"Did I do the right thing?" she asked turning to me again.
My body tingled with the memory of how it feels to not know what to do as a family member, a care taker, in such a situation. Nothing prepares us to be informed consumers at a time of death. We are left to hear the options, to ask for the doctor's recommendations, to wrestle those with our own powerful hopes of keeping the patient, a father, a spouse, in our lives as long as possible.
"Whatever decisions you've made, I'm sure you've done the best for him that you can," I told her. "Don't be hard on yourself," I said to her, "You're making decisions the best way you know how." I didn't sound very reassuring to myself.
I heard someone approaching from behind. Their daughter, about 20 years old, drove up to the doorway on a mechanized scooter, her legs withered and resting without purpose on the machine's footboard. She introduced herself and continued to chatter in one long string about where she had just come from: the drug store. She had purchased jelly beans and spent the next five minutes telling me in a sing-song tone about them: how she had selected them, how one can match the color of the jelly bean to a chart on the back that tells you it's flavor, how much they cost. The other snacks she might have bought but decided not to. She barely acknowledged her mother or her father. We might have been sitting in a park or riding the subway; two strangers talking about jelly beans in order to fill the time.
The respirator machine beeped a high and disturbing tone, interrupting the daughter's buoyant banter and the father's in-and-out breathing. Then again. His breath halted, held, sputtered, then began again The mother jumped to her feet, her lost hands fluttering over the machines, the tubes, the face of her husband, like two panicked birds caught in a room and unable to find the window. She was so agitated by the routine beeps that I thought perhaps fetching the nurse would be helpful -- a knowledgeable voice to explain to her what was happening. They had only arrived a few hours before. Maybe no one had yet had a chance to speak with them about what was happening, where they were, that their husband and father was dying.
"What's wrong with the machine, maybe it should be adjusted. Why does it keep doing that," she said in her sustained panic, a pitch higher now. Please can you get our nurse." She said the nurse's name. The name of the stern nurse I work so hard to avoid.
I found the nurse in the break room, eating her dinner out of a plastic container and surrounded by a few other colleagues.
"Excuse me," I said. "I'm sorry for interrupting. The wife of patient X is very upset. She's asked for you."
"Listen," said the nurse, "How about you stay out of that room, OK?" I nodded my head in humiliated obedience, pushing the door behind me closed so that no one outside would hear our conversation. "That man's got multiple diseases and they're still act like he's going to get better and go home," she said. I stood still for a beat, perhaps with my own mouth hanging open. Then I compliantly shook my head yes and turned to leave. I heard her push her chair back to reluctantly stand and follow me out of the break room.
I slowly made my way to a few other rooms; one patient clearly in the end of life stage, very close to death, had a volunteer sitting with her, holding her hand and playing war era music on an iphone for her. It seemed peaceful but I wondered if the patient wanted a stranger holding her hand, if she liked the music. She was hispanic; maybe her taste in music had been different, maybe she didn't even know the volunteer was even there.
In another room I found myself sitting with an old Southern black woman, her face worn and wrinkled as an old pair of shoes, a colorful scarf tied around her head. She had somehow made her way from her bed to an armchair in the corner. She asked me to stay and talk with her and, because there was no other chair, she directed me to sit on the end of her bed (something that all volunteers are told not to do). I hesitantly sat down, then in time found myself swinging my feet and enjoying her colorful stories of family, the old South, her work and her love of New York. She was spry and so long as she was talking about events of decades ago, she was coherent. But when she approached recent events in her conversation, her memory was disjointed and her talk fantastical. She was getting ready to go home, she told me. We talked and laughed for nearly half an hour as she sat comfortably in the chair at the end of her bed, two long tubes running from under her clothes to the clear bags hanging on a metal stand by her bed.
Her nurse, a woman that I had grown fond of during my routine visits, entered the room with a pen and a few papers in her hand. I asked if it was ok that I sit on the end of the bed.
"You stay right there, honey," chirped the lively old patient. "You ain't hurtin' a thang," she said in her beautiful Southern accent. The nurse gave me a nod of approval, checked that the tubes were not too stretched, then held the paper out to the patient and asked her to sign on a dotted line. Immediately, the old woman changed, protested, proclaiming that she wouldn't sign anything unless she knew what it was. "What is it? Just tell me what it is," she exclaimed. The nurse didn't. She pushed the patient to sign, the patient, growing louder and louder, refused, pushing the papers and the pen away.
"I know what you're trying to do, you're trying to take my money away. That's what that paper is. You wanna get my money. They're always trying to get my money," she said to me. In a calm voice I said to the patient, thinking perhaps our rapport would calm her, reassure her, and using her name, "No X dear, that's not what the paper will do." I didn't know what the paper was. I suspected it was a DNR order.
"I'm not signing anything unless I know what it is," she yelled again. Just then the gruff nurse walked in the door behind me.
"You," she said to me. I need you to go to the pharmacy. Get x for me."
"Don't I need a prescription?" I asked.
"No," she said sighing. She wrote the name of an ear drop drug on a paper towel and off I went to the third floor pharmacy, feeling as though I had been told again, in another way, to leave and not at all certain that I shouldn't. When I returned to the hospice ward, I found the gruff nurse, handed her the ear drops with a "ma'am," and went to the break room to grab my coat.
In the break room, the nurse who had been unable to get the old black woman to sign the paper said as she looked up at the news program on the TV, "She's a difficult patient." I nodded my head.
"I'm leaving,"I said. She clapped her hands twice, whether at my announcement or something on the TV program I didn't know. I was a half hour before my shift was over when I left the ward. I was done.