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Carey Candrian ~

I am an assistant professor of health communication. Since 2008, as a volunteer, educator and researcher, I have been active in hospice care. As many people know, hospice teams (nurses, social workers, doctors, chaplains, volunteers) help dying patients and their families live as fully as possible during their remaining days together.

In November 2016, right before the presidential election, I started a project aimed at identifying the best practices in communicating about hospice to prospective hospice patients. The intent was to help them make an informed choice about whether or not to enroll.

For six months, I observed hospice nurses, patients and caregivers during prehospice consultations, and interviewed most of them.

I saw a wide array of patients--families, single, divorced, undocumented, gays, straights, African-Americans, Native-Americans, homeless, ex-prisoners--and in many settings, from homes to nursing facilities and hospitals.

Starting out, I knew already that compassion is intrinsic to hospice care. No patient is turned away because of race, sex, age, gender or ability to pay.

But after the election, I became keenly aware of just how many patients, caregivers and nurses harbor social and political values that differ starkly from my own. This raised a series of internal dilemmas that I'd never imagined possible.

To illustrate, here is one of my initial visits.

November 10, 2016: I read my first email of the day.

Hi Carey, we have a hospice visit this afternoon with Becky (RN). Let me know if you want to shadow. Notes about the patient are below.

I scroll down.

Mr. Banks is 75 years old with prostate cancer and no longer seeking treatment. Wife would like to talk about hospice.

"Sounds great," I type. "I'll see Becky at 4."

3:30 pm: "Take a right on Bolton Road and proceed for one-point-five miles," my GPS says. By the roadside, I see one Trump sign, then another. "In a half mile, take a right on Lilac Lane; your destination will be on the left." As I pull up, two more signs pop into view.

Becky is in her car, reviewing the patient's chart. She waves me over.

"He went to the doctor last week and was told that the cancer has spread," she says. "They're worried he doesn't have much time left. His wife and dog are inside, and he's a veteran." We head for the house.

"I've been waiting for you!" Mrs. Banks says, opening the door. An excited Labradoodle leaps up on us.

"Down, Ruby, down!" Mrs. Banks says. "Take the stairs, turn right, and then you'll see Johnny."

His room is filled with displays of war medals, American flags, family photos and a gigantic TV screen. Mr. Banks lies on a hospital bed in the corner.

"Sit down," Mrs. Banks says.

"My man, my man!" Mr. Banks says as Trump flashes across the screen.

For ninety minutes, Becky talks with Johnny and his wife about where they are in the illness journey, what they want, what they need and how hospice might help.

Becky listens to their stories ("We've been married for fifty-three years...We go to Hawaii every summer; this year we're bringing our grandkids") and never rushes. She hears their fears ("I was exposed to Agent Orange in the military, and I'm a decorated vet, but this illness scares me more than anything") and never judges. She understands their goals and wishes ("I don't want to be in pain...I want to die at home, with my wife and kids") and offers solutions.

After discussing everything with Becky, Johnny and his wife decide to start hospice care.

The word "hospice" comes from the Latin hospes, meaning "guest or stranger." In short, hospice takes care of strangers, no matter who they are, where they are or what their illness.

Paradoxically, hospes also means "host." I've realized that my fellow hospice workers and I haven't talked much about how we "hosts" fit into the equation--and how, exactly, the guests and strangers may view us.

I've gone into houses that feature Confederate flags and Trump signs. I've felt less safe there than in some homes racked with squalor and inhabited by ex-prisoners.

Why is that?

Because I'm a woman. Because I'm gay. Because I'm married to a woman who speaks English as her second language.

Walking into a house and knowing that its residents have voted for someone whose stated beliefs deny my basic humanity and worth as a person, I feel it in every cell of my body.

Do I ever choose not to enter one of these houses? No. Because I know that, even in these places, a transformation can take place.

As soon as I enter a patient's space, I look into his or her eyes. Not a fleeting glance, but a long, steady gaze, as if I can see into the person's mind, and vice-versa.

In this moment of deep connection, nothing else matters--and something palpable happens. Something shifts, and something softens.

Meeting a stranger made vulnerable by illness, I see something so real: the deeply wrinkled skin, the faded brown freckles, the oxygen tank and foggy eyeglass lenses. I see the arthritic hands, the bony chest expanding and contracting, the eyes slowly opening and closing as the head twists towards whoever is speaking.

I start to hear things differently, too.

"We'll be married sixty years in April."

"The pain is so bad, I pray I don't wake up in the morning."

"Losing my mom will be tough, but not as tough as burying my own two kids in the Eighties."

"I'll lose my job if I miss another day being here with my dad."

"The hospital says they can't do anything more for me."

When we talk about something as fragile and meaningful as the end of life, it's as if that simple act has the power to tame hate, to tame judgment, and all the noise that goes with them.

I don't fully understand this mysterious power, but I know that it's real--at least, for me.

I felt the softening happen as I listened to Johnny and his wife talk with Becky, and as their eyes met mine. The stereotypes I'd slapped on them slowly unraveled. They, in turn, responded with gratitude and appreciation to us for being there, for listening and for helping them get the care and support they needed.

Feeling their humanity so profoundly, all the while knowing that they might not accept mine, creates an enormous tension within me. And it raises many questions.

Must we talk about something as momentous as life and death for our differences to melt away?

When I give patients like Johnny my compassion, can I hope that it will be reciprocated?

What happens if, when we look into each others' eyes, my anger and resentment turns to empathy, but his doesn't?

And when I give compassion freely, knowing (or fearing) that it won't be reciprocated, what does that do to me?

For caregivers facing this situation, is compassion, in fact, the best practice?

What can we ask ourselves to give? And what can we expect in return?


About the author:

Carey Candrian is an assistant professor in the division of general internal medicine at the University of Colorado School of Medicine, in Aurora. Her book Communicating Care at the End of Life was published in 2014, and her works have appeared in newspapers and medical and social-science journals. "During my training as an ethnographer (one who studies people and cultures), I was taught to write about everything: what I was hearing, seeing, feeling--even what I was smelling. I also learned to write about what wasn't being said, felt, seen, heard or understood. My writing tries to give voice to these silences as a way of rethinking how we care for one another, and vice-versa. I felt compelled to share this story to illuminate the challenges of responding to differences with empathy--and the need to do so, now more than ever. On a personal note, I love being with my family; I also love yellow Labs, the Mediterranean Sea, tall mountains and paella."

Story editor:

Diane Guernsey

Comments   

# Ronna Edelstein 2018-03-19 17:03
Carey, it has taken me time, but I finally understand that all people are basically the same: we all want good health and happiness (at least contentment) for those we love, we all want peace in the world, and we all want tomorrow to be better than today. Hospice takes away our differences and shows that people are people, no matter their sexual orientation, ethnicity, political beliefs, race, etc. If only we lived in a world without judgment! I wish President Trump would read your beautiful essay--and learn from it.
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# Dan Yashinsky 2018-03-18 17:46
Much appreciate your piece, Carey. We need people to build bridges more than fences.
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# janice mancuso 2018-03-17 20:13
I read this soon after reading "People Are Hard to Hate Close Up. Move In." - a chapter in Brene Brown's book, "Braving the Wilderness." A sentence that stood out: "Almost everyone I've ever interviewed or known will tell you that it's easier to be pissed off than it is to be hurt or scared." A few pages later: "Challenging ourselves to live by higher standards requires constant diligence and awareness. ... In addition to [these], we need courage."

I appreciate the questions Ms. Candrian left us with. They stimulate self-reflection and difficult discussions. We need both.

PS Last night on PBS News Hour, Mark Shields talked about how draining & fatiguing the last 15 mos have been for many on a personal level (i.e. our well-being & peace of mind), with all the bullying, meanness & public humiliation emanating from the White House. This is not about "tolerance of differing political viewpoints," as Mr. Rhodes wrote. It's about common decency.
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# Cordon Bittner 2018-03-17 15:40
Mr. Rhodes apparently finds you flawed because you don’t honor some of your clients’ political and social beliefs Perhaps he should “expand his social and political outlook”. Compassion is a one way process. It plants a seed. Often it grows into a beautiful tree that inspires others.
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# Betsy Willis 2018-03-17 10:57
I am a 90 year old gay woman with stage 4 metastasized breast cancer as well as a very left wing democrat and I heard Carey's message clearly. I, too, spend time with others that don't share my political feelings but find them easy to empathize with and feel it coming from them as we spend time together in medical sites. The human side is such a healing place to be and where souls tend to meet.
Thanks, Carey, for you and others like you.
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# Karen Roberts 2018-03-17 10:11
As a former hospice nurse, I can really relate to this. And sometimes, the compassion was not two-way: we had patients who refused to let our African-America n nurse in their house, or receive care from our Japanese social worker. I'm sure if some folks had known one of our staff was lesbian it would have become an issue as well.
It is powerful bigotry indeed when a person refuses care from compassionate people during the hour of their greatest need. Compassion is the answer, in my book, but it's not always able to overcome fear and years of reinforced bigotry and hatred. Thank you for this piece.
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# Dennis Rhodes 2018-03-17 03:52
Ms. Candrian, for all her good work, needs to broaden
her social and political outlook. I am a gay, non-racist,
conservative gay man and a fervent supporter of
President Trump. Ms. Candrian's depiction of her Trump-
supporting clients as somehow "flawed" caused me
concern. Yes, compassion is a two-way street; so is
tolerance of differing political viewpoints.
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# artie 2018-03-16 21:40
Carey, you are both brave and very forgiving. I don't believe I could go into "enemy territory" and suggest solutions to their problems. Somehow I think if they are not part of the solution they are part of the problem. We must have support, economic tax support from all our citizens. Keep up the good work though I don't know how you do it.
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# Susan Turner 2018-03-16 20:33
Thank you for your openness and honesty.
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# Pris Campbell 2018-03-16 19:47
This is a very thought provoking article. Thank you.

The haiku in this issue is excellent, too.
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