This is what true patient care is about


Heart of summer. Early August. All of Holland is on holiday. We are sitting in the flesh-colored morning light, in his back room, stuffed away behind the nurses’ station.

He is sick as hell and just 32. I am sitting next to his mother and his girlfriend. The intern and nurse are standing behind me, breathing carefully. He sits with his back to us, at his table. Visibly fighting for air. Short of wind. Hands covering his eyes. I notice his bent back. Track his breathing. 30? 35 times a minute.

The window is open. The sweet smell of summer is wafting in. The contrast between the beauty of outside and the cruelty here inside takes me off guard.

A few weeks ago, I admitted to him that I liked him. Probably not the most professional thing to say. But he clearly appreciated it. He had charisma. The kind of guy who lights up a boring party.

Death is always brutal. But the death of someone so young, at the peak of his life, is one of nature’s most heinous acts. That’s how I felt.

“Of course, I’m bringing this home with me,” was my blatant reply to one of the team residents.

He has an enormous tumor in his lungs that has spread to his bones, liver, and brain.

“My head?” he’d questioned hopelessly, after I’d flipped over the MRI of his cerebrum.

The past few months, we had tried chemo after chemo. Called in renowned professors. The fear was always palpable. Dexamethasone. Pemetrexed. Etoposide. Erlotinib. Some other exotic names. All useless. The cancer continued to spread, mercilessly, gnawing away at his once notable physique, to leave this broken man sitting before us.

His breathing had become even more difficult the last weeks. He could no longer lie down, because it made him feel like he was suffocating. That was because it had spread into the anterior chamber of his heart, cruelly assuring that any decent way of pumping his blood forward was impossible. Decent. A word absent from cancer’s vocabulary.

The diagnoses was chilling. Pericarditis carcinomatosa. Latin for gruesome.

He had spent the last two days resting against his table. And that was where he sat, 24 hours a day. He slept with his head on that table. When I told him, I found it a rather humiliating option, he snapped: “I will stay by my girlfriend until the very end. In full consciousness.” Time and time again, he’d turned down morphine, even though I had made it clear it would not make him drowsy. He’d reply with stoic silence. Regardless of how ridiculous his refusal to take the morphine was to me, I truly admired his character.

His girlfriend glanced over at me. Late 20s. Pretty. She squeezed his hand. Her face, devastated. And then asked she the question that had initially brought us here: “Can we, still? Get married?”

We’d just taken several minutes talk about The End. His very imminent death. “So, the final couplet has resounded,” he restated. Symbolically. Painfully. He brazenly admitted his time was up. Finally. Death had already begun. He was looking despondent. He had known it for a while now. I shifted my gaze to the tag around his arm. We shared a birth year. I knew this. 1977.

“We can hold your wedding here, of course,” I said. “But then we have to hurry up a bit. Actually, we have to move pretty quickly. Today. Not a day later.”

In actuality, I had no darn clue if it was even possible. So there we stood. In the hall. The intern directly dials city hall in the neighboring town. We get the registry office on the line, and I brace myself for a bunch of bureaucratic nonsense and the kind of questions only God knows the answer to. But what happens next is completely different.

After telling the whole story, suddenly all the doors seem to be open. The mayor is pulled out of an important council meeting to sign the necessary papers. An army of civil servants is suddenly available at every beck and call. “Passport missing?” says the councilwoman. “Who cares …” she adds in one breath. Wow. In no more than 50 minutes we manage to arrange an entire wedding ceremony, from the witnesses to the officiant. This is not in my job description. But who cares. They can marry that afternoon.

In the meantime, half of the hospital’s support staff is pulling together to turn the sitting room into a virtual wedding chapel. Even the kitchen starts making a cake. I am astounded. This is care. This is what care is about.

The sun sets behind the trees in the distance. She is standing next to him in its soft rays. He, sitting, fighting for air. Intensely happy. They fold their hands together. This leaves an everlasting impression. In the few short months since he became sick, they have reached a remarkable level of unity. Full of strength and love they say their wedding vows, swearing to be faithful ‘til long, long after death has parted them.

In the end, nothing remains but love.

The intern winks to me, teary eyed. Together, we leave them. We cry. In the hallway. This, of course, is very unprofessional. I couldn’t give a damn.

He dies that very night. At his table. But next to his wife.

Sander de Hosson is a pulmonary physician in the Netherlands.  He can be reached on twitter @shossontwits.  This story received the a Global Lung Cancer Journalism award.

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