Overheard in the emergency room...

I was just in part of the emergency area of the hospital when I overheard an intake interview:

"Mr. Jones, did you have any advance directive paperwork filled out, like a Do Not Resuscitate order? Don't freak out, I'm not implying anything. I'm required to ask everybody."

"No. I don't have one."

"Did you want to fill one out while you're here at all?"

"No. I'm fine."

'Til Death -

I 

I had never been on rounds before. I had never really known what they consisted of, other than what I had seen in the typical hospital TV drama. And I certainly had never seen what the palliative doctor actually does. 

I should have been prepared, given my area of research. I knew that palliative care is a type of health care in which providers attend to the patients' needs beyond simply the physical. Palliative doctors work to provide emotional, psychological, and spiritual care, recognizing that the patient is more than the illness. As most people do not realize that palliation is an option until they are faced with a terminal illness and are not improving from standard medical intervention, palliative care is often inaccurately equated with hospice care. Although I knew the textbook explanation of palliation, I was not at all prepared for what the day had in store. 

We had just met with three individuals who were discussing discharging their mother's best friend, to move her home and begin care in a hospice program. I listened quietly as the doctor asked what they would do when the patient's health declined and she was unable to care for herself. I was fascinated by the fact that the three family members and doctor calmly discussed the course of care, simultaneously negotiating the logistics, while also recognizing and paying homage to the patient as a person. The group made the whole conversation look skillfull. I guess you could say, the first experience of the day was somewhat what I had expected.

We left the family alone to talk and turned down a hallway to visit with another family member. We were heading toward a man who was sitting temporarily in a hospital wheelchair. He was shaking slightly and staring nervously at the open room across the hall. I followed his gaze, and to my right I saw 8 or 9 doctors, moving quickly in yellow, sanitary gowns, gathering around a hospital bed. I couldn't see a face, but I noticed a bare, swollen leg on top of the bedsheets. I looked back to the man in the wheelchair. He continued to shake, and I glanced to Dr. Broderick and the orthopedic surgeon, as they began talking about the woman in the other room.  

"He's really anxious," the ortho explained, referring to the shaking man in the wheelchair, who I later learned was Ron. Dr. Broderick motioned for Kavin and I to pull up a chair. I set a chair next to Ron and tried to listen to the doctors' conversation. I soon learned that it was Ron's wife's swollen leg, I saw peering out from under the bedsheets. Dr. Broderick busied herself in the room with all the other doctors, as Kavin and I tried to distract Ron. Ron told us he and LuAnn were married in 1950. He smiled as he reminisced, but each time he referred to his wife or their family, he stared nervously at the group of doctors blocking his view and began shaking more uncontrollably. We continued to talk in soft voices, asking him to tell us about his granddaughter. Ron had just shown us pictures as Dr. Broderick came back and pulled up a chair next to us. She didn't have to begin with "It's not good," because we already knew. Dr. Broderick began explaining to Ron that his wife's lungs were surrounded by fluid and that anything they did to try to drain the fluid would be invasive and likely unsuccessful. 

Ron's eyes started to well with tears as Dr. Broderick spoke. I was fighting back my own tears as I reached out and put a hand on Ron's shoulder. Dr. Broderick asked Ron if she could call her daughter. The phone rang a few times, and Dr. Broderick, Ron, Kavin, and I all waited in silence for the daughter to answer the other line. 

Dr. Broderick finally spoke, "It's not daddy, it's Dr. Broderick" she began. I barely listened to the details, instead I was looking at Ron, watching him transition from uncontrollable shaking to staring at the room, glancing at Dr. Broderick, and looking at the clock. He was agitated and rightfully so given we had just overheard Dr. Broderick tell Ron's daughter that Ron's wife of almost 60 years had only days if not hours of life left. Ron's eyes welled up again. Dr. Broderick said, "Yes, he's aware. He's hearing everything I'm saying." Ron chimed in, "Tell her not to worry about me, I've taken my medication." 

Dr. Broderick relayed the information, and we all listened quietly as she finished the phone call. She handed the phone to Ron. He tried to make lunch plans with his daughter, who was on her way from another city, trying to make it in time to see her mother alive. Ron mentioned some pizza that he had in the refrigerator at home. I rubbed his shoulder. Ron got off the phone, and the doctors in the other room were lowering LuAnn's bed. They left the room and discarded their gowns. I couldn't help but think that this small act symbolized the giving up and the beginning of LuAnn's dying process. Dr. Broderick told Ron he could go in and sit with his wife. Ron made his way to her room, and I carried a chair in to place by the bed. Ron sat down, seemingly unsure of where to look, and finally his eyes rested back on Kavin and myself. 

We put on gowns, entered the room, and knelt by Ron's chair. It was eerily quiet, the room was dimly lit, and it was only then that I saw LuAnn's face. Her eyes were closed, as she struggled to breathe, with her husband and two strangers taking watch by her bed.

Don't you forget about me.

As soon as I read chapter five on “Nonabandonment” in Quill’s Caring for Patients at the End of Life, I knew immediately which underlying value and assumptions to discuss, as an experience I had with Walter left me with several questions about hospice care. In chapter five, Quill argues that nonabandonment should be a central obligation of physicians, as physicians should focus on nurturing a continuous relationship between themselves and patients. Quill explains that the relationship between patient and physician need not end with diagnosis or even the first or last medical procedure. Rather a long-term relationship between the physician/patient, which lasts until the patient dies or recovers, is of utmost importance. Essentially, nonabandonment highlights a relationship which involves an open-ended commitment.

Of course, Quill acknowledges cultural and systemic issues which affect the ability for physicians to engage in such relationships with patients, as he notes the prevalence of managed care systems, and this latter note is one I wish to take up, given my conversation about Walter this week.

I received a phone call on Tuesday morning from the hospice music therapist. She informed me that Walter was being discharged. I had never heard this term used before, so I asked her to elaborate. She explained that Walter was improving and no longer met the Medicare requirement of a prognosis of death in less than six months. I asked her if that meant that Walter had graduated, a term I had heard used in the past. “Yes,” she replied, “we often use those terms interchangeably.” She continued, “So that means you can visit him until the 11th according to Medicare.” “Thank you for letting me know,” I responded.

After I hung up, I continued thinking about what she had said. I would not use the terms ‘discharge’ and ‘graduated’ interchangeably, given the conversations I’ve had with Walter. 'Graduated' implies that all should be happy and joyous, as Walter has escaped death for a while longer. Given the fear of death in this society, being able to avoid death is commended. However, Walter still has prostate cancer. He has not been cured, and although the providers suspect death is not as imminent as it was before, Walter is still dying.

Walter has some psychological and emotional needs and was benefiting from visits with people from hospice. On more than one occasion, he mentioned that he did not know what hospice, or as he calls it ‘hostel’, was actually all about. However, he often accounted that when he needed to talk and was about to call hostel, someone always arrived before he even called. He was beginning to understand that hospice could be there for him, when he needed them most. He could count on hospice and believed that hospice served more than just his medical or physical needs, as they provided listeners for him to talk through his fears with.

Walter often spoke about friends who had committed suicide and admitted his thoughts about such decisions. The only friends he could speak with about these concerns were suicidal themselves, and so I believe Walter began to count on hospice personnel with whom he could engage in these conversations as they were possibly less-biased than his friends.

And now, Walter has graduated – or more accurately, Walter has been discharged.

I understand that I can still visit Walter on my own and be the listening conversant he might need. I also understand that hospices cannot afford to offer services to all individuals unless paid for by Medicare and that Walter does not meet those requirements anymore. However, I am not sure if Walter understands. He has just gotten to a place where he believes he can trust in and count on hospice and I’m not sure if he will understand where his newfound relationships have gone. I also understand that most likely, Walter will be a hospice patient once again, and so these benefits might again be realized in the future; however, I think he would benefit from hospice in the present.

To me, I feel as though Walter has been abandoned. I appreciate that Quill acknowledged the systemic issues with the philosophy of nonabandonment but having seen Walter’s experience, I’m wondering what happens, specifically in hospice, in those moments when patients graduate or are discharged. Does nonabandonment involve switching patients to palliative care, which offers holistic services without the same hospice requirements? Will hospice personnel strive to not abandon Walter and ensure that he receives palliative care? How did they explain this change to Walter? Will Walter’s family feel the strain of losing the extra support?

in your eyes I am complete

I walked into the establishment where Walter lived. I don’t know if I actually liked the place, or if I saw it in stark contrast to other nursing homes I had visited or even the previous building that housed this establishment. I had just visited the space this nursing home once occupied. There were few cars in a neighboring parking lot and the doors had clearly been boarded up. The outer decay of the building fit with the assumption that several people had died there. I don’t know if my positive evaluation of Walter’s new home was a result from seeing the previous building or if I was thinking about the stark white interior of other new nursing homes I had visited. Nursing homes in which daily life was so clinical and patients were left sitting in the hallway, unnoticed by nurses who busily walked past them.

Walter’s home was different.

The walls were a warm bronze color. Several dark mahogany desks welcomed visitors, under bright but inviting lights. Large leather armchairs were positioned in front of several large TVs. The man who directed me to Walter’s room asked if I had visited there before. I said that I hadn’t and asked how long they had occupied this new building and if the older one on 20th avenue was their previous establishment. The manager proudly recounted his story about the move and renovations. He smiled as he motioned toward Walter’s room. Yes, this place was different, I thought. Very different.

I entered Walter’s room and found the 80 year-old man sitting in an arm chair by his bed, a copy of the local newspaper on his lap. I introduced myself as a hospice volunteer and sat down. I had been told that Walter had a good long-term memory but often struggled remembering events from moment to moment. He began by trying to explain why he had called hospice in the first place. He provided me with his understanding about what hospice care is, not unusual for patients to open with. I’ve always found it interesting that patients seem determine to let hospice representatives know how much they understand. I quietly listened to his explanation and told him I just wanted to visit, and he didn’t have to have a reason for wanting to visit with anyone from hospice.
He paused for a moment, staring at the wall to the left of us. "Maybe I called to talk about what I'm feeling. You know not everybody talks about their feelings, especially around these parts. I had a friend who wouldn't talk. He would just go to his house, pull his car in the garage and shut the door. He forgot to turn off the car. He didn't talk to anybody, he just put his car in the garage and forgot to turn it off. I don't know how you do that." 

This moment caught me off guard but not as much as the moment that soon followed. I shook my head and said that it was a shame he didn’t have anyone to talk to about it.

“Sometimes I think about that.”

“What?”

“I had a friend I used to get coffee with. I was talking with him the other day. He said that if he ever had to go to a nursing home, he would probably put his car in the garage and forget to turn it off. I don’t know what to say about that. What do you say to someone who says he would forget to turn the car off if he had to live in a place like this?”

I was speechless. “Wow. I’m not sure what I would say.” I frantically searched my mind for something to tell him. He didn’t seem to be asking me as one person to another, seeking another perspective on existential issues, but he seemed to be asking me as if he thought I, as a representative of hospice, knew exactly how to respond. In that moment, I started to rethink all I had studied, trying to come up with something to say. How could I have studied this subject for so long and not be able to come up with a single thing to say?

“Sometimes I think about that,” he repeated.

I paused. The silence in the room was deafening. Walter looked as though he was going to say more, so I waited for him to continue. He looked around the room, and I took a moment to glance around as well. The paint and draperies I had noticed earlier as being a warm, comforting color suddenly looked dull and stuffy. The rich golds and maroons seemed heavy and depressing, and I began to realize that Walter’s perspective of the nursing home might be much different than my interpretation as an outsider. I looked back at Walter sympathetically. Apparently he was not going to offer anything more, so I asked a follow-up question.

“You do?” I thought that by repeating his questions or by asking simple exploratory questions, I could keep him talking, which I knew seemed to be cathartic for many patients.

“It would be easy-” he continued.

I held my breath.

“-but then I tell him, ‘well, I’m ready to go at any time, but I guess I just want to see what tomorrow looks like.’”

I exhaled. “That’s a great answer.” Walter chuckled and changed topics. We talked about his wife, family, younger years. We had a great conversation and after about an hour, I left and told Walter I would be back in a week.

As I was driving home, I continued to think about Walter’s question. I had never expected a patient to suggest that s/he thinks about suicide. I know it might seem odd that it had never occurred to me before, but in all my research, I had found that suicide rates were low for hospice patients. A friend’s father, an architect, once asked me for a consultation on a hospice build. He was concerned with the rooms being on the second floor with a balcony. He was worried patients would become depressed and jump. I had tried to reassure him with support from research about hospice and the basic reasons patients are even at in-house settings, but this moment with Walter made me doubt any previous knowledge I had. Gone were Walter’s friends, love of his life, well known community members. Walter was alone, except for a few visits from his daughter and phone calls with his suicidal friends. I became very concerned for Walter and decided that I would be his new friend, his constant companion.

This interaction made me think about research I’m learning in another class of mine. I’m enrolled in a graduate seminar entitled: Communication, Constructs, and Identity. In this class, we cover personal construct theory and symbolic interactionism. Symbolic interactionism posits that we can only learn about ourselves through interactions with others. We behave in a particular way and others provide us with the language to understand ourselves in the moment. In other words, our experiences become meaningful through interaction and reflection, and these experiences in turn shape how we see ourselves (Mead, 1934). Mead argues that any action an individual does is made meaningful only through an existing cultural framework. Duck (2010) offers the example of a child who touches a hot stove. When an adult reacts by saying “That's hot; and I bet it hurts”, the adult is giving linguistic terminology to the child’s material experience (p. 23). The child then learns not only what is meant by ‘hot,’ but also that others are able to interpret the her/his experience as well. Essentially the child’s sense of self develops through social interaction. Thus, I can only understand me, my feelings, my experiences, through others. I know me through others.

My interaction with Walter – how do I see death? How do I experience a place, a setting, a moment? Personal construct theory posits that we have to be able to anticipate experiences in order to form constructs about them, which forms our identities, but I could never anticipate how living in such a place, a nursing home, would be had it not been for my interaction with Walter and his inviting me into his narrative.

Still. living.

Susan did not die that day, and when I went back to visit a few days later, it was long after breakfast time. It had been a long day for me, and I didn't feel like driving 15 miles out to visit Susan. I knew I was being selfish, but I also recognized my feelings as realistic and normal. Volunteering is thought to be selfless, and I often am congratulated by others when they learn about what I study, but there are days when it becomes tiring to make time for visits. Immediately after I have these thoughts, I of course feel guilty, often thinking back to moments such as Susan's breakfast when I realize that some of the people I visit are all alone and would probably never hope to die with an untouched breakfast tray in front of them. After a few moments, I knew I needed to go see Susan, so I headed back to the nursing home.

I headed for Susan's door, as a nurse was just leaving her room. "Is Susan awake? I was just coming to visit her." "Susan just died. A hospice volunteer was here a half hour ago, and she died. She's all clean now and the windows are open for a breeze. We're calling her family, but it'll take them a while to get here if you wanted to stop in." I froze for a moment. When I had visited Susan days before, she was on final days, so I knew it wasn't going to be long. However after the weekend went by, Susan was still alive, so I suppose I wasn't expecting to hear that she had just died. I had expected to be the one sitting with her as she eased out of this life. I told the nurse I would only be a few minutes. I went into Susan's room and found her very much like she had been days before. Her eyes were barely closed and her mouth was half open. I touched her arm. Her skin still felt papery and slightly warm. When Susan was alive, her breathing was so slow that often she appeared to not be breathing at all - a look not much different than she appeared moments after her death. Since her skin was still warm, she even felt as alive as she had days before. At first glance, it was difficult to believe that Susan was actually dead. I looked at her face and then noticed her left ear had started to turn blue. I knew then that Susan was dead. I said a quick prayer, thanking God for Susan's life, and praying for her soul, and I turned to leave the room. Just before I headed out the door, I glanced back once more at Susan. Out of the corner of my eye, I saw the Yahtzee game sitting on the dresser and thought about how we had never gotten to play even one game.

The most important meal of the day...

The next morning I returned to Susan's home. When I arrived, she was still sleeping and looked much like she had the night before - eyes barely closed, mouth half opened. In front of her still body sat an untouched tray of breakfast food. I quietly took a seat to the side of her bed, whispering that I had returned and would sit with her for a while. I started to read while I listened to her less than audible breathing. I glanced up every once in a while when her breathing sounded exasperated and stared at her breakfast. I wondered how long the tray had been sitting there and whether she had even been awake to know that breakfast had been served. Her orange juice began to separate, and I imagined that the glass of milk would have tasted tepid.

I looked away from her tray and tried to focus my attention on other areas of the room. I noticed the Yahtzee game I brought her a few weeks before was in the corner on the dresser. The plastic wrap had been removed and someone had written her name on the box in permanent marker. We never had a chance to play, but I took comfort in the fact that someone must have opened it and possibly played a round with Susan. After an hour, Susan still had not woken up. I packed up my things, rubbed her arm, and whispered that I would be back to visit again shortly.

I went back home, but I could not get the image of Susan's stale breakfast out of my head. I know these details about Susan's separated orange juice and warm milk might seem extreme. Who would sit and stare at her breakfast for so long? Is this moment really meaningful at all? I thought about why I might have marked this moment as profound. I realized that although Susan was asleep, in a state which ordinarily might have seemed peaceful and calm, I found this moment to be eerie and painful. It was likely that Susan didn't even know anyone had delivered breakfast. If unaware, it was possible that Susan might die just like that - eyes barely closed, mouth half-opened, breakfast deconstructing in front of her lifeless body - like a scene you would watch on Six Feet Under and assume it was just a high dollar still shot. But here was Susan, in real life, dying in front of her untouched breakfast tray. And I mourned this moment for Susan and wondered if I could die in such a way.

Music from another room.

I need this space, this new Blog, this place where I can gather my thoughts and write through my experiences with hospice. I've often thought deeply about those moments when I am sitting next to another human being who is dying, while I am reflecting on who I am now, and who I hope to be when I die - as if I can assume my death is so far off into the distant future that I would have time to transition into who I hope to be when I die.

I think often about what music I would want playing, who I would want in the room, what I might have just recently eaten. Those questions might seem bizarre, but they are questions I thought about with one patient in particular. Her name was Susan.

On our first few visits, Susan was awake, cognizant, and what most of us would think of as living, not dying. We talked about what she liked to do and I soon learned that she was an avid Yahtzee player. We talked about her family, a sister-in-law who lived far away, a brother. She didn't mention kids or parents, and I didn't ask. Her sister-in-law was a teacher.

I would leave from visits with Susan with little knowledge about her life, other than her cravings for raspberry iced tea, her relationship with her sister-in-law, and her interest in playing Yahtzee. I didn't know much, but we were building a relationship.

A week went by, and I went to visit Susan again. We talked about the blanket her sister made and sipped raspberry iced tea. I brought her a Yahtzee game, but Susan was too tired to play, so I put the box up on her dresser, suggesting there would be other visits when we would play. While I was setting the game aside, Susan began to cough and reach for her bowl. I watched helplessly as her frail body heaved, and she threw up her raspberry iced tea. I quickly grabbed some towels and patted her mouth dry, while I tried to breathe out my nose to block the smell. It was in that moment that I realized I could never be a nurse. I quietly coached myself not to think about what was happening so I wouldn't start getting sick as well. Susan finished vomiting and looked into the bowl. She smiled and laughed, feigning pride in her ability to throw up iced tea when she had nothing else in her system. She smiled at me and I smiled back, though we both knew that in this moment, it was quite the opposite of pride that Susan was feeling. I took the bowl away and washed it out. Susan decided she needed to sleep, so I went home.

The next time I went to go see Susan was after I had received an email that Susan was on her final days. Doctors concluded that Susan was most likely within 48 hours of her death, so I went to sit with her during her final moments. I arrived at 8:30 on a Friday night and sat down next to her bed. Her eyes were half closed, her mouth half open, and I reached for her small, cold hand. The illness had deteriorated her body, so that her bones were visible on her face and hands, but her arms were swollen from excess fluid. Her disproportionate figure suggested that she was in pain, but her deep breathing sounded peaceful. I held her hand and stroked her arm, telling Susan that I was there by her side. After a few minutes, Susan opened her eyes, and although I assumed her breathing was peaceful, her eyes told me that she was afraid. Open wide and unblinking, Susan's eyes finally rested on me. "Susan, it's me Sarah. I'm going to sit with you for a little bit tonight. Okay?" Susan nodded, but didn't say anything. We sat there for a while in silence and every few minutes, Susan's eyes began to soften and the fear seemed to be lessening.

I asked Susan if she wanted me to play some music. She nodded, and I selected a CD from her nightstand. I turned the CD on, and ragtime music began ringing into her room. I stopped before going back to my seat, trying to decided if I should put a new CD in. I couldn't help but think how bizarre it was to play old ragtime, get-up-and-dance music, while this woman was laying here dying. I wanted desperately for her to be at peace but that seemed impossible with the music I had just turned on. I turned the volume down slightly and turned to Susan. "Is this okay?"

Susan didn't respond.

I decided to just sit down and hope that my presence and hand-holding would provide the comfort the music might not. And while Susan dosed off, I began to seriously consider what music I would want to die to. I don't consider this thought to be morbid. We will all die someday - that's why the title of this Blog - "as WE lay dying," but do we all think about that moment before it happens? What was Susan thinking? Did she ever imagine she would die to ragtime music? Was this music playing when she was experiencing something earlier in her life? Did she have her first kiss to this song? Break up with her first love? Stay up all night with her sister-in-law reminiscing about the good ol' days? And what does this music do now? Comfort her with old memories? Remind her of a past she'd soon like to forget? Inspire her for a future she cannot have?

Eventually I was preparing to leave, so I turned off Susan's CD. I sat back down to tell her I was leaving soon. She spoke for the first time that night. "Wake me up if I fall asleep. I want to be awake the whole time you're here." I told Susan she could sleep, that I wouldn't mind, but she insisted I keep her awake. Susan also told me she didn't want to be alone.

I couldn't help but be reminded of the kids I used to babysit in Las Vegas. They too, did not want to sleep when I was there, afraid they might miss out on something, and they often didn't want to sleep alone, afraid to be by themselves. And here was this woman, who was much older than both of those children and myself, asking for the same company. I told her I could stay for a few more minutes and that I would be back the next morning to visit.