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Ellen Kolton

"He's just expired," said the nurse as I approached Ray's room in the large inner-city hospital where I work as a patient advocate. "And his wife has just arrived. Why don't you go in?"

I found Natalie bent over Ray's body. His hollow cheek was drenched with her tears.

"I'm so sor--"

"I told him yesterday to talk to Jesus," Natalie interrupted, speaking quickly. "I told him if the two of them decided it was time for him to go, then it was okay with me. I guess they had their talk," she said, glancing at Ray as though expecting an answer.

"I stayed with him all night," she went on. "This morning, I went home to take a shower. When I got back, Ray had just taken his last breath." She looked down at him almost accusingly.

Natalie was petite and stylishly dressed. Her black hair fell sleekly to her shoulders. Around her neck, swinging from a long gold chain, was her husband's wedding ring. It looked just like the one I wore all through high school, signifying that I was going steady.

I thought back to when I'd first seen Ray. A strikingly handsome man in his mid-fifties, he had only recently been diagnosed with advanced liver cancer, and his eyes were still bright despite the illness that was stealing his flesh and stamina. Gripping a walker, he walked slowly alongside a nurse. His rich purple robe, far too large for him, nearly grazed the floor, giving him an aura of royalty, or holiness.

As we chatted, he told me about his family--especially his wife, Natalie. They'd been married for twenty-seven years.

"We walk to work every day," he said. "I'm a tailor, and she's a beautician." During one walk, he'd suffered severe abdominal pain and had come to the emergency room, where his cancer was diagnosed. The ensuing chemotherapy had made him very sick and weak; he'd been admitted for rehydration and blood transfusions.

"I'd like to meet Natalie," I said.

"Oh, she'll be in later," he said.

I left her a note asking her to contact me, but she never called. I wondered if, like many families, she and Ray were dissatisfied with the rehab facilities covered by their limited insurance and so preferred to have Ray stay in the hospital. I hated these situations; I sympathized both with the patients' desire for a high-quality rehab facility and with the hospital's need to discharge patients who no longer qualified for acute care.

Ray finally went to rehab, but a few weeks later he was back in the hospital. His clinicians asked me to join them for their conversation with the family about end-of-life decision-making.

I felt a bit hesitant, but as I entered Ray's room, Natalie approached and introduced herself.

"It's so nice to finally meet you," she said. I hadn't expected her to be so warm and charming.

Ray lay in bed, eyes closed. He'd gotten even thinner. An oncologist, a palliative-care physician, a social worker and several residents and interns crowded around the bed.

The oncologist spoke quietly and matter-of-factly: "Unfortunately, the chemotherapy hasn't stopped the cancer from spreading, and there are no further treatment options."

After a silence, the palliative-care physician began, "We have medications that can be used to keep you comfortable in the time remaining--"

"You didn't listen to him!" Natalie interrupted sharply, jabbing her index finger at the oncologist. "You forced him to get more treatment. You took away the little time we have left together!"

I'd thought Ray was asleep, but he opened his eyes.

"That's right," he said. "Everyone was telling me I had to have the treatments. But they didn't help; they only made me sick. You didn't tell me that was going to happen." He closed his eyes again.

The oncologist's face was impassive. I couldn't tell if he felt disappointed over the failed treatment, upset at being yelled at, or simply eager to end the conversation. I could appreciate that he found delivering the news as hard as Ray and Natalie found hearing it.

I blinked hard to keep the tears from spilling over, remembering my own devastation when my mother's doctors had told me that she was dying of lung cancer. I understood Natalie's impulse to blame someone, just as I had blamed my mother's surgeon. I wished the oncologist would speak; Natalie needed solace, not silence.

The doctors filed out. I stayed behind, struggling to find something comforting to say. "I understand how upsetting this must be for you," I finally managed.

Now, just days later, Natalie and I stood gazing at Ray's lifeless body swathed in the purple robe.

"He kissed me three times last night," Natalie told me. "That's how we always said goodbye. Whether we were happy, sad or angry, it didn't matter." She made the sound with her lips: smack, smack, smack.

Laughing and crying at the same time, she said, "Ray and I first met at a friend's barbecue. She never stopped reminding us of that day."

Feeling her emotions wash over me, I felt an answering surge of feeling. Almost instinctively, I tried to stifle it. Although I've always tried to hide my responses, Natalie's uncensored grief touched something inside me.

I want that, I thought suddenly. I want to love and be loved as fiercely and deeply as she loves him. I want to express my feelings that freely...

I recalled the day my mother died. Like Natalie, I had arrived just moments too late. I'd felt that raw pain when the nurse told me my mother's last words, but I'd just nodded and said "Thank you."

Now, more than ever, I envied Natalie her unrestrained grief.

"Does the hospital help with funeral arrangements?" Natalie asked. I told her that I'd have the social worker come talk with her.

Now it was time for me to go.

"Can I give you a hug?" I asked Natalie. Part of me wanted to comfort her; part of me, in truth, also craved a bit of her emotional power for myself.

When she hugged me, I felt the strength beneath her pain.

"Do you think you could style my hair?" I asked. The words just popped out.

Have I overstepped a professional boundary? I wondered, wishing that I could take them back. Natalie looked sharply at me, clearly surprised.

There was a long pause.

"Of course," she said. She stirred the contents of her purse and fished out her card to give me.

Thanking her, I took the card back to my office and put it in my desk drawer.

Since then I've often wondered, Did I cross a line between being compassionate and being unprofessional? And I've reflected on my wish to hold onto the intense connection I felt with this strong, vibrant woman--perhaps as a way of healing myself.

I've thought how challenging it can be to connect on a human level while still maintaining a professional distance. In opening my heart to Ray and Natalie, I also opened it to my own hurts.

Months later, I see her card whenever I open the top drawer. I'm still embarrassed at having asked for it. And I'm wondering if I will ever call.


About the author:

Ellen Kolton was a journalist before becoming a patient advocate fifteen years ago. For the past six years she has worked at Boston Medical Center, where she is a member of the ethics committee and also helps to facilitate narrative writing workshops for clinicians and staff. "It's a privilege to be allowed into the intimate lives of patients and their families. Although I talk to people all day, I often try to mask my feelings so that I can be attentive to theirs. It's only when I sit down to write that I can truly absorb the emotional magnitude of these encounters."

Story editor:

Diane Guernsey

 

 

Comments   

# Carol Santalucia 2015-03-28 09:30
Thank you for this thoughtful article, Ellen. I have been a patient advocate for over 30 years, and can really identify with your story. Currently, I work with hospitals about their patient experience initiatives, and one of the things that I focus on is the importance of the emotional connection with patients, their families, and each other. And you have given such a beautiful example of making the emotional connection. It means the world to people. Thank you for the wonderful work that you are doing.
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# Jaqueline 2015-03-28 01:36
I found this story deep, tender. The teller of the story shares candidly and with vulnerability her responses, her questions, the dilemma she faces as a professional who hasw been touched and memories triggered, by her relationship with her patient and his wife. Moving and really valuable. Naming something that happens to many of us working in this area. Thank you Ellen.
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# Diane Greig 2015-03-27 23:49
A total human and real response. The best. Real, True. Blessings.
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# ellen diamond 2015-03-27 20:26
My oncologist made a choice for me that resulted in far too much suffering on my part. He was out of his field and should not have taken on that decision. Unfortunately, I had no say in the matter. I have so wished for him to apologize to me. We are well past the time when any action might have been taken, so an apology could not be turned against him, and that's the last thing I would ever have done. Even now, 5 yrs later, I know if he could ever bring himself to say he's sorry,it would help me to breathe a little more freely. He wanted me to accept, like the doctor in your story, that he did what he thought was best and therefore no apology was required. Perhaps he thought it would be unprofessional! How little so many doctors understand about the human heart. Thank you for a wonderful story about that heart..
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# Robert Finlay 2015-03-27 19:10
Nice story. I am pleased that it didn't turn into an exposition on Jesus, and as an ethicist hope that you don't invite him into your work either, unless asked, then refer to a specialist.

How so many people can believe in an allegedly loving god who if he/she was omnipotent, could have prevented cancer in the first place.

When my son died, I finally came out as an atheist, and once left a surgery that I was to observe when the whole OR (7th day adventist) circled and started a prayer. I said, sorry I was hoping for an education in science, not mythology. And left.

Best wishes.
Sure this won't stay up, so I hope you get to read it.
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# ellen diamond 2015-03-27 20:32
I'm not sure that you understood it was he wife who made he religious statement to her husband, not the author, so there was no real need to caution her against bringing religion into her counseling, as she' hadn't done so.
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# Robert Finlay 2015-03-28 00:23
Understood it. Complimented on not picking up that thread. Great story
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# Pris Campbell 2015-03-27 17:22
I hope she calls. The oncologist walked away. Asking for, then not following through might feel like the same kind of rejection. Who can answer the question about when lines were crossed. Maybe she needs a kind face now. The card is a perfect opening.
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# Charlene 2015-03-29 00:26
Prise C,. I imagine it would feel like a false comfort measure,and not heartfelt like it was intended.
As when buying a home, Doctors should provide patients and family with Full disclosure, of All treatments and medications adverse side effects. Not just the benefits.
I think when doctors take the oath "to due no harm", they need to consider the psychological harm done to patients and family, for the (undisclosed) consequences of the treatment or medication they receive. Some of which can not even be found on the drug manufactures website.
Ellen, I believe this is your calling, you obviously have your heart in it.
PS, if you can, call the family back after giving them your calling card. Sometimes when you are overwhelmed with circumstances, you become paralyzed and frozen in time. And tunnel vision doesn't lend itself to new things or more things to do...even if it means help. And Ellen, keep writing & thank you.
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