Final Costume Change

Barring trauma, people die on their own terms, regardless of what the rest of the world might have to say about it.

I often say people die the way they’ve lived. Mysterious as it may sound, angry people die fighting, loving people die effusing gratitude, and even in silence, people seem to know what they need. Barring trauma, people die on their own terms, regardless of what the rest of the world might have to say about it. 

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Evan Wilson's face is the only part of his body unexplored by color and art. The rest is covered in tattoos.

“I have worked on sets for the Met and band albums my whole life.” His pride is as palpable as the boggy heart thumping in his chest. 

“I have an art show I need to set up before I go.” Evan’s eyes dart from mine to the room door, then to his feet and finally rest on the head of hair buried in his chest. 

“She loves me so. I’m totally relaxed. I don’t need nothin’. But please, what can you do to help her?” Evan’s eyes continue their dance, mimicking the staccato of his struggling heart.

The cardiology team has asked palliative care to meet with Evan to discuss his goals of care. It seems they are not entirely in agreement about what interventions to offer. 

“You see,” Marcus, the junior doctor on the cardiology team begins to explain on the phone before I meet Evan, “Mr. Wilson complains to us every day that his legs hurt because they are so swollen and that his breathing is difficult because his lungs have fluid in them. Yet, when the nurses bring him the medication to help with these symptoms, he refuses to take it!” The exasperation in the young doctor’s voice is unmistakable.

“Why is that?” I ask.

“He says he doesn’t like how much it makes him pee.”

The challenge of balancing the side effects of any medical intervention with its gain cannot be underestimated. Yet, even before the risks and benefits can be weighed, the care team must first consider the patient’s goal. Otherwise, we run the risk of offering solutions (with their associated drawbacks) to problems a person never intended us to focus on. 

Such is the case for Evan.

“So many people around me are arguing. I wish they could all just be as relaxed as I am.” Evan’s calm seems to distract from what would otherwise be a very intrusive cough that punctuates his every other word. Instead, he sees it differently.

“I’m tired. No one else has had to live in this body. I’ve been living with this (his arms motion up and down along his chest) for years.” Evan’s face conjures that of a worn circus contortionist finally allowed to unwind after endless performances designed to display grace and ease under unimaginable tension and distress.

“I’m an artist,” Evan resumes in an emphatic tone, speaking with pride. “I have work I need to complete. I’m not ready to lay it all down.” 

I begin to sense a need for clarity. Is Evan interested in medical care that could extend his life so he can work on his art? Or is he saying something else? 

“Mr. Wilson, if you were not in the hospital right now and were feeling as well as you wanted, what would you be doing?”

He looks down at his lover, Beverly, as he rubs her shoulder. “I love the light. There’s nothing like it, right honey? Seeing the sunset over the desert, that is where I want to be. That is where Beverly and I are heading. First to see my parents and then to Joshua Tree.”

Beverly nods, “That’s what he wants. That’s all he’s talkin’ about.” Rotating her head to look into his eyes, I watch her tears flatten as her cheek brushes against his hospital gown. 

Evan chimes in, as if drinking her tears for sustenance, “See, I’ve been spiritual my whole life. I’ve seen people go to the desert with just a wool coat and a candle. And if they make it through the night without the divine spirit taking them, then that is what happens. And if they don’t, well they don’t.” His smile returns and his eyes resume their dance of curiosity. “I ain’t never liked being cooped up inside. I need to be in the light. I need to feel the sand. Whatever happens, happens.”

“It sounds like you don’t much like being here in the hospital?” I ask only slightly rhetorically.

“Nope, I sure don’t,” his straightforward reply.

“And I’m hearing you are most concerned about Beverly, and how she’s doing.” My eyes began to mirror his as if locked in a game of Pong, bouncing between his gaze on me, his gaze on Beverly, and her gaze on him.

“What can you do for her? That’s what I want to know.” Evan's focus is immutable.

“Well, I wonder if either of you have heard about hospice?” Beverly’s body shifts as she straightens to listen. Evan’s nod of affirmation seems to be reassuring to them both.

I describe the structure and function of the hospice team, “You don’t have to take any medications you don’t want to, and they don’t move into your home with you. They just visit, like we are now. And you can call them any time, day or night, if you need anything at all. No question too small.”

“Sounds good to me," Evan says with a smile. 

“They can also provide any equipment you might find helpful, like a wheelchair or commode or shower chair, or an adjustable bed like the one you are in here.” I notice that Evan is slowly shaking his head. “Nope, none of that is for me.” He wraps his arms around Beverly and gives a gentle squeeze. “She knows exactly how I want to die. And it isn’t lying down in a bed.” This forces Beverly to smile which causes her to relax, which is exactly the medication Evan has been seeking.

I ask their permission to have a hospice team meet with them then excuse myself to call the cardiologists to fill them in on Evan’s request.

“What?” Marcus' startled surprise rattles around in my eardrum. “He doesn’t want surgery?”

“No. He doesn’t,” I calmly reply. “He wants to go to the desert. He wants to complete his art. He has no interest in being in the hospital. He is relaxed and quite matter-of-fact about dying.”

Marcus is anything but.

The next morning, I receive a frantic message from the cardiology team, “Mr. Wilson is asking what we are doing so he can live longer. Please call me.”

Marcus' voice is shaking as he tells me of Evan’s visit with his best friend. “He’s his other surrogate decision-maker. And he wants us to do everything. He wants us to do the surgery.”

“What does Mr. Wilson want? I ask.

“Well, I’m not sure he can answer.”

“What do you mean? Has he had a change in condition? Can he no longer speak?” As a doctor who specializes in caring for people who are seriously ill as well as those nearing the end of life, I am accustomed to some of my patients becoming suddenly unresponsive or dying. I am not clear that that is what Marcus is telling me, and I have learned to avoid assuming.

“No, no, he is still talking. I’m just not sure he’s making sense. His partner and friend are pretty upset.”

“Okay. I’ll go see him now, and I’ll call you back.”

As I enter Evan’s room, neither Beverly nor his other surrogate decision-maker/friend is present. Instead, Evan is sitting in an armchair at the side of his bed, dressed in his own clothes, facing a woman about his age. She has a large book in her lap and a very kind face.

“Hey doc, good to see ya’. Look here and meet my friend, Mary.”

Mary nods to me and extends her hand out from under the book. “I haven’t seen Evan for over, what is it, 40 years?” 

Evan mutters about art and school and riding bicycles before he adds, “Mary and I were in kindergarten together.” He smiles as if he has a secret he can’t wait to spill. 

Mary then adds, “I brought him this book because he has always loved art." 

“And suffering,” Evan interjects. “But not anymore.”

I look at him inquiringly and wait for further clarification. Evan obliges.

“I want to let you know I’m leaving today. I’m just tellin’ you that because I like ya’. I don’t want you to feel like ya’ could’ve done something differently to keep me. You understand?” 

I nod and say, “I appreciate that. Does Beverly know you are leaving today?” 

“Yep, she sure does,” a brisk clap of his hands on his thighs mirrors the emphatic tone of his reply.

“And your friend that was here earlier?” I am curious to hear as I have yet to meet him.

“He left because he doesn’t understand. I wish they could all just relax.” This last thought seems to make him more frustrated than anything else we’ve talked about. He motions to Mary to hold up her book.

“Turn it over. There! See? On the back.” 

We all stare in silence at the three paintings featured on the back cover of the book. Three faces of the same person. Self-portraits, I presume, of Frida Kahlo. Their significance escapes me.  

“Look at her!” he implores. "Look at all her suffering.”

As I know nothing of the life story of the artist I wait for enlightenment. 

Evan intuitively complies. “She had to work so hard to leave this life. You can see it in her faces, each one of them, as she aged. Just look at all those costume changes!” Evan marvels and then seems to visibly ache with empathy, “I’m all out of costume changes.”

I now understand and excuse myself to call Beverly and Marcus. His bedside nurse follows me out the door and sits next to me as I reach for the phone. 

“Hey, uh, are you going to call the cardiology team?” he asks with a panicked tone in his voice.

“I’m first going to call his girlfriend, just to make sure she knows his plan. Then I’ll call the team.”

“Well," he hesitates, “I wonder if you'd feel comfortable letting the team know how he’s feeling. I mean, what he’s saying he wants?”

“Of course,” I say, “What are you concerned about?”

“Well, it’s just that, I hear what he’s saying, and it seems like you hear what he’s saying.” He looks around us before speaking the rest of his thought out loud. “The cardiology team just keeps asking us to do things to him that he doesn’t want and, well, maybe they will listen to you.” His anxiety is visible and all too familiar. 

I reassure him while acknowledging him for his commitment to the patient and respect of the team, “I think several people are having a hard time letting Evan go.”

Beverly’s voice seems to affirm my assertion. “Hi, Dr. Gross. Have you seen Evan today? I just talked with Brian, his best friend. He and I are both thinking he should stay in the hospital. That he should have the surgery.”

I am amazed, yet not surprised. 

“Beverly, I just came from his room." I deliberately slow my speech in an effort to slow Beverly's racing mind. "He is visiting with a childhood friend he hasn’t seen in decades."

"Oh, he mentioned someone might come by."

"He is clear that he is leaving the hospital today.”

“I know that is what he is saying," Beverly sighs, “but do you think he can? I mean, do you think he can make that decision? Is that a rational choice?”

I imagine holding her hand at this moment. “Honestly, Beverly, it doesn’t matter what you or I or Brian think. He has the capacity to make his own decisions. And yes, it is a perfectly reasonable choice. And it seems to me he has been consistent in this choice for what sounds like his entire life.”

Beverly’s smile transmits over the phone line as a deep sigh mixed with a strained laugh, “Yeah, I know. You’re right. This is Evan.” And then the tears take over as she concludes with some muffled sniffles, "I just … cannot … imagine him … not being here."

While the power of love to heal may sound cliché, I can say after witnessing it time and again, I know of no better medicine.

Evan went home with Beverly and hospice support. They made plans to go to the desert. He died sitting upright in her arms—exactly the way he had wanted.

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