I kept reminding myself to breathe the way my yoga instructor had demonstrated in the introductory class; it was crucial in this situation. I’d learned long ago breathing was the only way to step into someone’s fear without becoming undone.
I shouldn’t have been surprised I was having a hard time with Rick’s death. He and I were emotionally close, and I’d taken a lot of professional risks for him. Why I’d taken them, I definitely know. Why I risk my career for patients’ well being when I really should stay under the proverbial radar, I know too. But we do such things in the kind of connection that hospice work creates. If Rick injured himself now, then all the trust that I’d developed with his family over the last two months would be compromised, and, less importantly, I really didn’t want to get written up again.
Rick had been a platoon commander for two tours of duty in Vietnam. Even though he had been in a coma for the last two days, he suddenly did that standing-up-and-running-thing that some dying soldiers do when they get close to death. I shouldn’t have panicked, but it was unsettling. It’s so eerily odd; as if the deathbed were a foxhole, and when the enemy finally discovers them, they run forward, as though saying, “Come and try to get me, motherfucker; I’m not going down without a fight.” It unnerved me and I wanted to turn away at that moment, but my responsibility to the family and dedication to the journey of dying stopped me.
I told myself, “Dammit, Nina, you’ve been in this situation many times before. Get your act together.”
Rick was slumped down on the floor next to the window.
“Look at me, Rick.” I placed my slightly trembling hands on the sides of his familiar, handsome face and gently lifted his chin off his chest. I kept nodding as I softened my voice.
“I’m gonna give you a big hug and we’re gonna get back up together. Then I’m gonna tuck you into bed. Stay with me sweetheart, stay with me. Your beautiful family’s here; see them over there? Your bed is right here. You’re safe, no worries. Stay with me.”
I kept my belly soft as I guided this six foot one Marine onto the hospice bed he had occupied for the last two months. A soft belly enabled me to be strong, flexible, and balanced if either of us began falling. His family stood sniffling in the doorway, suppressing their grief and sobs. They were frightened and heartbroken. They needed some relief.
Rick had been admitted to our residential hospice against his family’s wishes, and he let me know his displeasure after his son, daughter, and wife introduced themselves. I perfected the half nod, half smile that communicated, “I get it. Don’t worry. I’ve seen this before. I can tell you’re not happy. We’ll talk alone later. Trust me on this one.”
His son, wife, and daughter wanted him to die at home, and they started the conversation with him by having a family meeting. Knowing that Rick was a self-proclaimed “results” and “logic” guy, they used data, reasoning, and statistics to convince him that dying at home surrounded by family and friends would be more comfortable for him.
“Dad is obviously not happy. He fought to be here, and it wasn’t too popular at home. He may give you a hard time because he knows how he wants this to play out. Mom is heartbroken that he refuses to be taken care of at home, and my sister is pretty numb at this point.” Rick’s son explained to me.
Rick believed their idea to have him home to die was a purely romantic notion corrupted by “Hollywood and pathetic romantics.” He was sixty-two years old and had founded a successful advertising firm in New York City after returning from Vietnam. His medical charts were extensive. We received them in chronological form, and the story of his life was one of accomplishments and overcoming obstacles many of us could never comprehend. During his admission, he chose to sit in the chair located farthest from the bed. I sensed he was evaluating a territory he didn’t trust quite yet.
He watched my body language, mannerisms, and tone of voice as I read his history. I could feel that every one of his senses was assessing me.
I spoke first. “Thank you, Mr. Gallen. I want to begin by honoring and admiring you for coming face-to-face with the possible end of your life. It takes a lot of courage and love.”
He looked surprised that I said this so openly. “Call me Rick.” He cleared his throat. “Well, I don’t know about the courage part, but I think I’ve exhausted all my possibilities.” He looked at his family. “And I don’t want them being bothered by me anymore.”
In this country, we think of dying primarily as a medical event. It’s much more than that. It’s about relationships: to ourselves, those we may be caring for, or those caring for us. Caring for the dying can be an intense, intimate, and deeply enlivening experience. Death can be an extraordinary mirror through which we see ourselves.
I continued, “I’m impressed with how thoroughly you’ve faced your disease. You’ve been through the mill, and I see you’ve done plenty of traveling for treatments. I read that it’s been two years since you were diagnosed?” I flicked through his chart.
“No big deal, I just did what the big team of docs thought I needed. I just had to do what needed to be done,” Rick replied, his voice strong and direct.
Rick’s son interrupted the flow. “That so-called team of doctors and ‘cheerleaders’ he had for two years hasn’t even called him or my mother since Dad decided to go on hospice. They consider this a huge failure, I guess.”
I remained quiet, nodding. I didn’t want to tell him I’d heard this many times before, because that conversation would get us off track. “And I read here that you went to work every day and even purchased another company the day you had your last chemotherapy treatment.”
I waited, put his chart down. “So . . . what’s next? I need to know your understanding of where your disease is now, so we can all be on the same page.”
Admitting a new patient is often challenging. Sometimes a family member will stand behind the patient and wave me away when I get near their forbidden words like death, hospice, cancer, and terminal. For instance, they haven’t told their loved one they have cancer, and the verbal gymnastics that support their omission make for a very stunted relationship with the patient. When I have a family like this, I look forward to the private, one-on-one conversation I’ll have with the actual patient. I make sure these conversations are light and factual, and that I’m without prejudice or judgment when I meet with them. They almost always know the truth.
I check in with myself constantly.
Nurses, volunteers, and visitors each have their own ideas of how one should die. I remind my staff that we are to meet everyone exactly where they are in their beliefs about their life, without trying to impose our personal beliefs on them unless they are in danger of harming themselves.
Once, this happened in a tragic way with a dearly loved patient. While he was still ambulatory and alert, he helped other patients by getting fresh water or reading aloud to them. He was kind and quiet, and his effort was appreciated. A lovely, reserved woman visited him daily. She was generous and kind too, and made sure the hospice kitchen had fresh soup in the Crockpot every day. After being a resident for two months, a volunteer discovered he was on a Megan’s Law list; he had a history of pedophilia. The volunteers banded together and refused to care for him. He sensed this and retreated to his room, where he died a few weeks later. I was disappointed in my team. We seemed locked in an impasse over this.
During that time, a Tibetan Buddhist monk was visiting one of our other patients. I asked him to join me for dinner, where I shared a few details about our team’s impasse. I didn’t disclose what the issue was, just that the patient’s life choices were dividing the staff. He said, “Sometimes people ask me if it’s too late to heal the pain of the past. They think there has been too much suffering between them and the dying person. It is my belief, and has been my experience, that it is never too late. Even after enormous pain and abuse, people can find a way to forgive each other. The moment of death has grandeur, solemnity, and frailty that can make people reexamine their attitudes and be more open and ready to forgive when before they could not. Even at the end of life, the mistakes of life can be undone.”
In Rick’s case, his wife was used to forgiving him. His Marine brotherhood was first and foremost during the first ten years of their marriage. She finally understood his brotherhood’s unbreakable bond after she was allowed to know small bits of the experiences Rick had endured with his men.
Like many soldiers, Rick returned from the Vietnam War addicted to heroin after insisting to being sent back to the battlefield with unhealed injuries. He had spent the last thirty-two years on methadone. He hid his narcotic dependency well, married, and had a son and daughter who were now young adults. His wife, Carmella, uncovered his secret when doctors weren’t able to relieve his pain after he broke his wrist playing tennis. A young emergency room doctor asked to speak to Rick privately and he shared his personal history of addiction with Rick. The doctor could see by the way Rick compensated for the pain, and how he phrased his questions that he was dealing with an active, high-functioning addict.
Rick was articulate and open. I enjoyed being his nurse during my evening shifts. He was naturally handsome, with a Marine discipline and a body that still looked fit even though it was ravaged by the colon cancer that had spread to his liver. He knew he was admitted to die. He was battling nausea, pain, and anxiety.
I wanted him close so I could drop in on him. He was in danger of getting out of bed without supervision, so the hospice team agreed to move him to the room right next to the nurses’ station and medication room. He knew that we wanted to be able to sit with him while still being able to get to the medications quickly. He always had a question for me, and while he was awake he would research the newest and most successful treatments for his symptoms. He was one of those patients who made me think outside routine medical consciousness and I respected and appreciated it. Wherever a nurse works, the facility breaks him or her into its own style and consciousness. I could always tell a nurse who trained at a certain hospital or school by the way she or he approached a problem, and the structure of her or his communication skills. These differences made for some challenging conversations during team meetings, to say the least.
This difference in style and opinion occurred with doctors too. One highly regarded doctor wanted his patients to be heavily sedated all the time, and others gave too little medication. So when I discuss a medication change or addition with a doctor, I discuss this first with the hospice pharmacist and do research to support my case.
Rick rang his call bell and asked me to sit down. “Nina, I was reading how adding gabapentin to the pain-medication regimen enhances the efficacy of narcotics. Does the medical director do this? I want it.” Rick’s words were short, and he was intensely focused, so I knew to be direct with him.
“It doesn’t enhance the efficacy, but it does work on pain that is affecting nerves. It may help with the sharp, shooting pain that you’re experiencing in your abdomen. It’ll take up to seven days to work. Are you sure about this? I’ll call the pharmacist and then speak to your doctor. How’re you doing right now?”
When patients have been taking narcotics for a long time, they understand their tolerance level and what they need to keep themselves out of physical or emotional pain. The pattern of addiction with someone who has a combination of physical and psychological distress—such as Rick—takes a lot of questioning and fleshing out of what is actually true. They have done a great deal to cover up their psychological addictions to the narcotics, and they’re not going to allow anyone to change the drug. They want to be involved in every step of the dosage changes. Rick had used over-the-counter drugs such as Tagamet to slow the breakdown of heroin in the stomach, therefore maximizing its effectiveness. He told me how he also used to drink lots of grapefruit juice to interfere with the enzymes in the liver and small intestine, attempting to maximize the effects of the drug by concentrating it.
I phoned the on-call pharmacist. It was Steve with the articulate, gorgeous bass voice. I’ve been conferring with him for years and always wondered what he looked like. We had a lively, educational, and kinda flirty discussion about the regimen for pain management at different hospices across the country. Rick’s abdominal pain could have been from the tumor, and the style of his symptoms told us that it concerned compressed nerve endings from his bloated organs. After figuring out the proper dose of gabapentin for him, I called and discussed it with his doctor for half an hour and got an order to begin the next day.
The interior decorator of the hospice wanted to achieve what he thought resembled the look of his favorite five-star hotel in London. I found the colors suffocating and silly compared to my minimalist taste. Large bright pink and green floral patterns covered the formal swags and valances on the windows and the dust ruffles on the beds. There were two electric fireplaces he wanted on all the time, and they made our hallways intolerably hot. Homemade quilts draped poorly on the bulky hospital beds, and the stiffness of the bleached and faded color-coordinated sheets joined the chorus of pretentiousness. The chiseled Marine made the décor look even more ridiculous and staged.
Rick’s family kept a twenty-four-hour vigil in the little seating area next to the nurses’ station. We always saw them as we worked and they grew to know each nurse’s idiosyncrasies, speech patterns, humor, and style. Rick’s daughter would walk to the medicine room when we were laughing, and I knew this added levity to her life of waiting. I’d try to repeat a joke or share the story of a harmless mistake our staff made and she would join in the laughter. She knew all the patients’ families by now, and she would add her own amusing stories that only those surrounded by the dying found funny. One day she shared with us which music we would have to play to confirm her death. “If I don’t start dancing when you crank that up, then you can pronounce me dead.”
I hope her family realized that sometimes we had to laugh when all we wanted to do was cry. Maintaining a calm, peaceful environment in the hospice is more difficult than it seems.
Rick forbade us to allow his family into his room. He demanded we keep the door closed at all times. When we opened it, his family would jump up from the stiff, chintz loveseats to catch a short glimpse of him. He wanted to do this dying by himself.
Two weeks passed; Rick was anxious and approaching a comatose state. He was short with his words, intolerant of nurses who wouldn’t follow his instructions, and he yelled out to me while I was working.
“Nina. I need to be repositioned.” Or “Nina. Let’s discuss this again.” Or “Nina. DAMMIT!” He picked at the sheets, looked all over the room, constantly shifted, and tried to get out of bed.
I opened his door, and from her vantage point outside, his daughter looked in and began to weep. She was petite like her mother and had the well-groomed, neutral air of a “military offspring “
After I helped him get more comfortable, I sat down next to him. “Rick, I need you to listen to me. Anxiety such as yours is often an indication that you may be getting closer to coma, but I have to make sure it’s not the medications affecting your mind. What’s going on in your head? I need to know. I have time. Try to articulate it any way you can.”
“Don’t worry, men, I’ll get you across this goddam river. What’s next? What are the coordinates? These aren’t my cammies.”
“Rick, look at me for a sec.” I took his hands between mine. I was fighting tears. “You are doing everything perfectly. You’re a loyal father, husband, and Marine. Your mind is confused right now because you’re sick. I’m gonna have a volunteer sitting with you all the time. You’re safe, soldier, no need to worry.”
My heart sunk into sadness as I watched this highly decorated Marine devolving into self-preservation mode, worried about his men. I also knew that this death could go badly if our team was unsuccessful in getting him to tune in to us as we guided him all the way to the end.
Compassion is a far greater and nobler thing than sympathy (pity). Pity has its roots in fear and is arrogant and condescending, sometimes even eliciting a smug feeling of “I’m glad it’s not me.” As Stephen Levine says, “When your fear touches someone’s pain it becomes pity; when your love touches someone’s pain, it becomes compassion.” I knew that Rick was suffering in that moment and I began unraveling the causes of his fear by thanking him silently, because he was giving me the greatest gift of all in prompting my compassion.
I gave him the antianxiety liquid medicine and waited the half hour for it to work. During this time, I made rounds with other patients, reminding myself to remain in nonjudgment. In one room, someone might be comfortable and peaceful, in another a family member might be falling apart emotionally. When I was a young nurse at the National Institutes of Health, I learned the skills to avoid moving into fear or anger. Comprising brilliant former military nurses, my mentors had an air of seriousness combined with wonderful senses of humor. They were able to maintain their sense of duty while demonstrating deep levels of kindness, efficiency, optimism and calm. They learned these skills on the battlefield and generously shared them with me.
Rick rang his call bell. I went in and was happy to see him relaxed and oriented. “Hey, you. How ya feelin’?” I asked quietly.
“Better. What the hell’s happening to me?” He asked, his body exhausted and limp.
I pulled up a chair, closed the door and sat down. I knew Rick had experienced all the outrageous promises, mind-numbing statistics, and cold discussions so many seriously ill people endure from their journey through the medical system. I knew that if I could approach him from goodwill and an open heart, he would hear me.
I wondered if I was able to at this moment.
“Before I answer this, may I ask a favor of you?” I became aware of my breathing. “You know that I’ve had your back and taken a lot of professional risks for you, right? Well, in case you forgot, I’ve been written up for not being a ‘team player’ because I’ve been challenged by you to think outside traditional medical thinking. And the questions you’ve prompted me to ask my medical director and staff has ruffled a lot of feathers around here. I love you for it but it annoys some people. Truthfully, I wish more patients were like you.” I leaned in toward him, speaking clearly and earnestly. “I’ve seen hundreds of families coming in and out of here. The hospice has room for twenty patients and I witness all types of love coming through these doors. I try my damnedest to imagine myself in everyone’s place; especially the families.” I was being too wordy, but I almost felt obligated to have a disclaimer for what I was about to say next.
Rick turned his weary face toward me. He rarely saw me this emphatic, passionate, and personal.
I stood up, paced in front of his bed and pointed to the door. “You have three people out there–day and night–who love you. You’re sitting here with all of your bravado and bravura and they are suffering. They jump up to get crumbs of you every time we open your door. Now if that isn’t love my dear man, then I don’t know what love is.” My voice cracked. I pinched between my eyes, fighting tears.
He looked at his hands and spoke slowly. “I know what you want. It’s just that my wife will start fussing over me and picking at my hair and clothes. I can’t stand that. And she’ll cry. I ask her not to, but she can’t help herself. She’s Italian. You know.”
I couldn’t suppress my tears. I was emphatic with an overtone of impatience. I waved my hand at him. “Yea, yea, yea . . . and you don’t want your son to see you weak, and your daughter may cry too! That’s nonsense. I won’t buy that. And by the way, there’s very little bullshit in a hospice. Everyone is standing on the very edge of life, and our job is to make the leap one of comfort and grace. There is no longer separation between you and them. Your good ol’ body is no longer the center of your universe, Rick. You’re truly human now. And guess what? You’re gonna leave and they are going be left with the collateral damage of not being allowed, ALLOWED to say good-bye—or anything—to you. You will be God knows where, but they have to keep on living.” Frustrated and heartbroken, I turned away and left. I’d crossed over a line with him.
When frustration builds inside me, I reflect on the fact that in order to be of service to my patients I have to include myself in the equation, in their suffering. Even though there is no cure, there can be great healing. But I can’t serve from a distance; this is intimate work. It’s the exploration of my own suffering that enables me to be of real assistance. In this instance, Rick touched something too personal and I knew I was risking his trust, reacting from my personal fear of wasting time. Rick didn’t deserve my diatribe.
Saying, “I understand” to someone who is dying is ridiculous, as they will know we are just guessing. Rick was the kind of man who would sniff out sentimentality and insincerity. Some nurses tell the family to give the dying “permission” to die. I’ve heard some loved ones say this and not really mean it. Caregivers, friends, and family must be honest with themselves because the dying have no time for subtleties and they know the truth. I was concerned that he was wasting precious time, and knowing he might be approaching a comatose state within a few days made me more intense.
Within five minutes, Rick’s bell rang. I went in. He was sitting up.
“Okay.” He was so weak I thought he was going to topple over the side of the bed. “What does a guy need to do to get a hair wash and shave in this joint?”
I winked at him, left his room and told my team that I’d be in his room for a half hour. I couldn’t stop smiling as I gently and quickly washed his hair, brushed his teeth, and gave him a rudimentary shave. He ran his hand over his chin and told me to keep my day job. I changed the pillowcase and put a fresh pajama top on him. I propped him up with pillows and gave him five minutes to rest. Then, instinctively, I gave him a kiss on top of his head. He rolled his eyes. “Women,” he sighed.
I opened his door and signaled for his family to come in. His wife put her knitting down, his son logged off his laptop, and his daughter woke from a nap. They glanced at each other a bit incredulously and when they got to the doorway, all three stopped.
I looked at Rick as if to say, “This is all yours, buddy.” He raised his hand off the bed and signaled them to come in. His wife ran to him and gently cupped his face in her hands as she cried and thanked him. Then she began fussing over his pajamas and straightening his hair. He patted the mattress and invited his daughter to come and sit next to him. She slowly nestled up to him and rested with her head on his chest. I imagined she did this when she was a little girl. Rick managed to lift his arm and pat her back. His son stood at the foot of the bed, tears rolling down his face. I noticed for the first time how he looked exactly like his father.
I whispered to Rick, “You’re the man,” gave him a thumbs-up and left his room.
Rick died three days later. When he finally submitted to the script that life writes for all of us, he settled into allowing his family to show their love. His pain was under control, but he had moments when he felt obligated and disoriented.
His son reassured Rick when he wakened between the toxin dreams and reality, believing he was in a war zone and needing to keep his men safe. His son placed cool compresses on Rick’s forehead when his temperature rose to 104 degrees. He stayed awake reorienting his father during the night, while the dying Marine whispered orders for his platoon to move forward or fall back. His wife sat beside him and prayed all the Latin prayers she remembered from her childhood in Sicily. Her rosary was a gift from her First Holy Communion. The pink crystal beads had been repaired or replaced five times, worn out from the friction of her fingers rubbing them after nearly fifty years of daily prayer. The crucifix at the center of the rosary was smooth and shiny, Jesus’ face unidentifiable.
She knew Rick wouldn’t have wanted a priest to perform the Sacrament of the Sick (Last Rites), so she brought holy water from the hospice chapel into his room every day. She sprinkled the holy water on his pillowcase without his knowledge, pretending the holy water she dabbed on her face were her tears. She would kiss Rick and anoint him through sacred kisses. She felt almost free of the narrowly defined code of behavior for military wives and she smiled joyfully when Rick was too tired to argue with her. Her love of the ritual of the rosary and her freedom from having to suppress overtly loving her husband were joyous to her. Their children saw them interacting on a level they’d never seen before.
Rick’s funeral was a fully decorated military ceremony with honors. Rick’s daughter carried the Medal of Honor he was awarded in 1977. His son supported the entire weight of his mother when she collapsed to her knees as she navigated the long aisle of Saint Catherine of Siena Church. Over twelve hundred people signed the guest books.
The Eagle, the Globe, and the Anchor were well represented by current and past Marines, and many remaining members of his platoons made the journey to honor their leader.
Courage has so many layers. Rick and his family had respect for one another, and their love was as deep as any love I have witnessed. Rick’s ability to trust another form of courage—letting go of control—was a lesson I learned from him. I wondered if I could die as well as he did.
As I headed home the evening of Rick’s death, I reminded myself to focus on driving. It’s a surreal feeling every time I leave work after a death. I feel as though I have to get back into the game of life too abruptly. When I stop for something to eat on my way home, my senses are highly attuned to people’s scent, accents, conversations and movements. I feel as though I’m invisible and watching a movie. I notice everyone rushing, heads down, going somewhere. I want to tell them to look around, stop, and say hello to each other. I want to beg them not to wait to tell someone they love them; that waiting is a luxury and a gamble with excruciatingly high stakes.
When I got home, I hugged my children’s father just a little longer than usual and visited each sleeping child, kissing their sweet faces.