By Daniel Tippens
A few months after my dad’s death in March 2011, I stood on the porch outside of my family home in Maryland. The sun had just risen, and I looked up and took in the scene: an acre of glistening green grass bordered by a thin lining of pine trees, their branches reaching downward to touch the ground. A large satellite pointed up, towards the clouds. My dad had built it in an attempt to get T.V channels for free, and I remember digging into the ground and pouring concrete around the dish’s base to secure it, watching my dad’s sweat drip from his forehead.
The previous day I had looked up hospice volunteer opportunities in New York. Knowing I would be departing for the city to start school in the coming months, I was hoping to be ready to start doing hospice work as soon as possible. Each program had several volunteer duties available; I could do administrative assistance, bereavement, or patient and family care. I wanted to be a part of a terminal patient’s life, bringing them happiness and companionship, at a time when they are in short supply, so the last option caught my eye.
I dialed the number to New York Hospice, whose slogan read “To Comfort Always,” and a woman named Sandra answered the phone. I told her about my interest in volunteering, and she responded gently with her first screening question.
“Why do you want to do Hospice?” In employment interviews, this kind of question comes across as alarming, as though anything you say will be considered a lie crafted to optimize your chances of getting the job. But Sandra’s inflection signaled genuine interest.
“My dad passed away from brain cancer a few months ago. We used hospice toward the end when he was bedridden, and they were a light in dark times. I want to be able to help other families the way they helped us.” I found myself wondering whether she’d think of my answer as clichéd.
“I’m very sorry to hear about your dad, and I’m glad that hospice volunteers brought you comfort and that you want to do the same. It’s our policy, however, not to allow somebody to volunteer for us if a loved one has passed away within a year of their start-date.” Her sentences struck me as a strange mix of the personal and professional.
“Okay, so I’ll contact you a year or so from his death?”
“I certainly look forward to hearing from you at that time! I hope you and your family continue to do well.”
My hospice training was scheduled to start at 9:00 a.m. the next day, and I would have to do two eight hour sessions before I would be allowed to interact with patients. I would have two options: I could either work in the in-patient care unit at St. Barnabas Hospital, in the Bronx, or I could be assigned to a patient who had just entered hospice and make regular home visits. Supine on my bed, I stared at the ceiling weighing my choices.
Hospitals typically have a wing designated to housing patients with acute symptoms that can’t be managed properly from home, called an in-patient unit (IPU). Frequently, though not always, the beds in these units are filled with terminal patients who will either die in the hospital, or will be released once their symptoms become manageable. In both situations, the patient turnover time tends to be around two weeks. If I were to volunteer there, I thought, would likely have only one or two interactions with a patient before he moved on to the next stage. If I worked with a single patient in a home, we would develop a deep and close relationship, and I would likely remain a presence in his family’s life after his death, at least for some time.
After being one of the primary caretakers for my dad for a year and a half, along with my brother Jon and my mom, I knew the pains of helping a family member for a long period of time; how you endure watching someone go through the stages of loss that come with dying — one day he looks aware and vibrant, and the next day his hand is submerged in a bowl of ice cream, and he has no idea what’s going on. You pick up his hand and dry it off. His visual awareness fades, and you notice that he has to take time to search for you, even when you are directly in front of him. Eventually, his legs fail when he’s walking, and he’ll fall, for no reason other than that his body is ceasing to communicate with his brain. Later may come seizures, during which you’ll watch his eyes roll back, his tongue protrude from his mouth, and his head shake back and forth. When he comes to, he has no idea what just happened, with only the terrified faces of those around him signaling that while he was unconscious, something terrible had occurred.
I didn’t want to be reminded of these things so vividly, so I decided on the IPU. I have always thought of myself as adept at connecting with people quickly, so hopefully, I would be well suited for interacting with patients only a couple of times when they passed through.
I entered the New York Hospice headquarters in Queens, and signed in with the doorman.
“Fourth floor,” he muttered, ushering me along.
The room where the training was held reminded me of the place where bible studies would be held in my childhood church. Plain brown carpeting lay beneath two standard white fold-out tables, and a small coffee area awaited incoming volunteers as they entered. There was only one window in the entire room, overlooking a small park area where teens sat, puffing cigarettes and laughing boisterously.
The training sessions were not particularly informative. Indeed, they were as underwhelming as the room in which they were held. At times, they showed clips of doctors interacting with patients and provided instructions on things to keep in mind while speaking with families –avoid discussing religion; don’t evangelize; ask patients if they want your company before you sit down; try not to have a depressed demeanor – while at others they tried to communicate what appeared to be their underlying message: that people can come to recognize that death is just another part of life and that it can be beautiful and peaceful; something that they can look back on with emotions other than sadness. It all seemed a bit too simple – even pat — with a whiff of boilerplate about it … which, of course, is precisely what it was.
During my first visit to the IPU in St. Barnabas, a seasoned hospice worker accompanied the group of new volunteers – four in total — to ensure we didn’t display any kind of gross incompetence. The first room we entered was bland, with surprisingly tacky paintings on the wall, and a small corner bathroom. A small box television hung from the ceiling, playing the newest Kung Fu Panda movie, with no audio and subtitles. The only redeemable feature of the room was the one large window which provided light during the day, and even this was marred by a brick wall, some fifty feet away. As it turned out, most of the other rooms in the IPU were much better: well lit; a decent view; and personal, with photos on the walls. The veteran among us approached the patient.
“Hi there, I’m Kate. We were wondering if you’d like some company?”
The patient’s smile receded a little when she saw that Kate had three observers behind her. I imagine she felt like a subject in an experiment or a patient who has to endure a doctor doing rounds with new interns.
“Sure, thanks.” She replied.
After two minutes of small talk, Kate excused herself and went to the bathroom, and the volunteer next to me, who had been exhibiting an atypical level of eagerness all morning, took some initiative.
“Hi I’m Janine. I’m a writer and was wondering if you would mind sharing your story?” The way Janine asked this question made me wonder if she would ask if she could take a selfie for her Instagram, too.
A week later, I entered St. Barnabas alone and flashed my ID badge to the guards. After eyeing me closely, they let me pass. I signed in at the IPU and asked the head nurse which patients might want a visitor. The nurse, an Hispanic woman in her mid-forties, with gentle eyes and a worn smile, told me to visit the patient in room 300. The door creaked open, and I saw an old woman lying on her hospital bed. The television was off, and a lonely silence filled the space between us. When I spoke, she searched around for the source of the voice, and her eyes eventually found me.
“Hi, I’m Dan. I’m a volunteer here, and I was wondering if you would like some company? I can chat with you, read you a book, play some music from my phone … whatever you’d like.”
The physical details of her body and face were indicative of her fragile state. Her arms were thin, and her veins protruded from her skin so prominently that I could see the blue and red running through them. Her wrinkled skin seemed loosely connected to her bones, and only a number of small, light brown patches gave color to her gaunt face.
“Oh, okay.” She replied with an inflection so strong that I was taken aback by the juxtaposition of her voice and body.
“What’s your name?” I asked, pulling up a chair.
“Stacey. I live in Brooklyn with my brother.” Her eyes remained fixed on her bed, though she glanced at me occasionally.
“Ah, I haven’t spent much time there, but I hear Williamsburg is becoming the hip place to live. I’ll bet people have you and your brother to thank for that,” I smiled at her, hoping she would return it.
She replied stoically, “I doubt it. We mostly keep to ourselves, but every now and then, we take walks out to the bridge.” I felt disappointed at the failure of my joke.
“Do you have any hobbies? I like to read and play the drums, going first to a quiet place with my books and then causing as much noise as people around me can handle. If someone were to follow me around they would probably think there’s something wrong with me.” I wondered whether the phrase something wrong with me might be in bad taste.
But Stacey didn’t seem to hear me. Her eyes continued to remain fixed on her bed. At this point, I wished that I had asked the nurse for Stacey’s diagnosis, so I could try to better understand what she was thinking. Suddenly she spoke.
“I need new shoes.” Her voice became soft, as though what she had said only loosely mapped onto the thought she was trying to express.
“Is there something on your mind, Stacey?” I asked gently, hoping she would be responsive. But instead she became agitated and screamed at me.
“Of course there’s something on my mind! I’m dying! Do you think I would have nothing to think about? Please get out!”
My heart sank deep into my stomach, and I got up.
“I’m sorry Stacey. I hope to talk with you again soon.”
Stacey wished me away by refusing to look in my direction. I walked out staring at the ground. What a stupid thing to ask. Why did I try to probe like that? Did you really think she would open up to a total stranger after a failed joke and three lines of small talk? Fuck. I came here to help and instead made someone’s last days worse.
I approached the nurse and told her what had happened, and she tried to cheer me up.
“I should have warned you that she is erratic and frequently agitated. She has brain cancer, and it has made her volatile. I was hoping she would be in a good mood for you. Don’t worry about it, Dan, you did nothing wrong. Her reaction had nothing to do with you. Keep up the good work.”
What she said made sense, but it made no difference to the guilt I felt. It even struck me as odd that she was praising me, telling me I had done “good work,” despite the fact that I had deeply upset this woman. And if causing her pain wasn’t my fault, then could I have taken credit if I’d made her happy? When I returned to the IPU a week later, Stacey was gone. She had slipped into a coma two days later and died shortly thereafter.
Not all, or even most, of my experiences turned out to be like the one with Stacey. Once I visited a comatose patient, whose family was by her side. The family was happy to have a visitor and asked me about what I do as a volunteer, and why I do it. I told them about my father, and they smiled sympathetically.
“What scares me the most,” the patient’s daughter said, “is that I don’t even know what is happening to my mom. The doctors never really explained to me clearly what pancreatic cancer is, and why it’s killing her. I just want to understand what is going on in her body, it would make me feel a little bit more in control of things.”
“Would you like for me to try to explain what is happening?” I asked.
I led them into the lunchroom in the IPU, where a small whiteboard hung on the wall, and the bright, unshaded LED lighting resembled that of a high school classroom. The family sat down at the table, huddled closely, with their attention turned toward me. I tried to explain how cancer develops and what a metastasis is. They listened eagerly, asking me questions, and I could see the appreciation growing in their faces. It had never occurred to me that simply understanding the cause of death could itself be a source of comfort, a sense of illusory control that makes it easier to endure a loved one’s decline.
The funny thing about being a Hospice volunteer in an IPU, though, is that most of the job is actually quite uneventful, and one wonders if one is making a difference at all. Many of the patients I saw were comatose, and we were still instructed to speak to them and hold their hands, because even though they displayed minimal signs of conscious activity, it was possible that they could experience things, at some level. After speaking with a comatose patient or holding his hand — sometimes for an hour or even more — I would leave the room never knowing he was even aware of my presence. After one night like this, I took a homeless man to dinner and talked with him about his life, just to feel like I had made a difference to someone.
My brother Jon once speculated that nations collectively grieve in the wake of massive domestic tragedies, by replaying them over and over in artwork and films. After the 9/11 attacks, Hollywood movies began to depict cities being destroyed in their story lines more than ever before, replaying the kind of horrors, in different ways, that we witnessed during the attacks that destroyed the World Trade Center. Buildings topple in Transformers, and a city is in ruins in I Am Legend.
When I was in the sixth grade, my mother, brother (Nathaniel), and I were in a serious car accident. My mom was driving us home from piano lessons on a winter evening, snow pushed up against the side of the roads. We stopped on a slight hill, in front of a red light, just before an intersection. Suddenly, I felt our car start to roll down the hill toward the red light. Frightened, I looked at my mom, calling out to her, but her head was down, and she was unresponsive. We rolled into the intersection, and I remember looking in the back seat at my brother, who seemed completely calm, and then out the window at the car speeding toward us, just before it T-boned us, directly striking the driver’s door. Our car spun into the snow, and when we stopped I saw that the front end of the car that had struck us looked like a wall — it was completely vertical, perpendicular to the rest of the vehicle. EMT’s arrived in what seemed like an instant, and pried my mom’s door open and carried her quickly into a helicopter.
In the wake of this event, whenever oncoming traffic passed us, while we were driving, I would hear the sound of smashing metal, tense up, and replay the event of the car accident in my mind. It would force me to think about why the event had happened, what (if anything), I’d done wrong, and what I would do if I could go back and do it all over again. Replaying the scene was a way for me to get past the accident and thus, to carry on with my life.
At times I have wondered if this is what I was doing, while working in Hospice. I found myself replaying a lot of the things I had experienced with my father. I would ask patients questions that I had put forth to my dad countless times, even the question, “Is there something on your mind?” I held comatose patients’ hands in the exact same way that I had held my father’s on the night of his death. I would look at a patient’s face, as he breathed mechanically, just as my father had when he had fallen into a coma, the mechanical sound indicating that it was no longer a person breathing, but a body. I would ask myself what I could have done differently with my dad and why he had died, when I was so young.
I sometimes think back to my first phone conversation with Sandra and how she had asked me why I wanted to do Hospice. At the time, I was convinced that the sole reason was that I wanted to help others, but maybe, in the end, it was really I who benefited the most, by grieving vicariously through them, slowly moving on after having lost my dad. And unlike the answer I had originally given her, I doubt that she would have found this one to be a cliché.
(This article was originally published on The Electric Agora)