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Virginia LeBaron is an Assistant Professor at the University of Virginia School of Nursing. She holds advance practice certifications as an acute care nurse practitioner (ACNP-BC) and in palliative care (ACHPN) and oncology nursing (AOCN). Virginia has been engaged in global health work since 2004 when she joined the Palliative Access Team of the International Network for Cancer Treatment and Research. She is passionate about improving the delivery of oncology palliative care services in low-and-middle income countries and supporting nurses who care for patients with advanced cancer. Virginia spent 9 months in India as a Fulbright Fellow studying cancer care at a government hospital, and is working on publishing a book related to her research.

Dignity Awareness: The Ultimate Targeted Therapy

The man I found standing in the women's restroom looked uneasy, like he was about to get in trouble.
PUBLISHED: 4:43 PM, MON JANUARY 5, 2015
Talk about this article with nurses and others in the oncology community in the General Discussions Oncology Nursing News discussion group.
The man I found standing in the women’s restroom looked uneasy, like he was about to get in trouble.

I had just attended a talk in the swanky boardroom of a prestigious cancer center, and afterwards stopped in the restroom. There, I saw a woman in a wheelchair positioned in front of the counter of sinks.  She was clearly very ill, her face full and flushed with the unmistakable mark of steroid therapy.  A faded yellow scarf was wrapped around her head, a few wisps of black hair peeking out.
 
The man standing awkwardly behind the wheelchair—her husband? her son?—was trying to figure out how to help the woman wash her hands.  He looked completely at a loss, confused and frustrated, watching the woman repeatedly and weakly stretch out her thin arms, in a futile effort to get her hands under the faucet to activate the automatic stream of water.  From the angle of her wheelchair, and the distance between her and the sink, she wasn’t even coming close. It was logistically impossible.
 
“Can I help you?”  I asked.
 
The man looked up at me, his expression exhausted, spent.  Utterly depleted. It was a look I instantly recognized.  I’ve seen it in the countless haggard faces of spouses and children and nieces and friends who are doing their best to care for a loved one with cancer.  I’ve worn that look myself.
 
“I’m embarrassed enough already,” the man responded matter-of-factly, his brown eyes catching mine briefly before glancing away.  He didn’t say this unkindly, but his frank and raw reply caught me off-guard.
 
What I wish I’d said: It’s okay.  Please don’t feel embarrassed.  Helping someone is never a reason to be embarrassed.  It’s not your fault these bathrooms are designed terribly.
 
What I said:  Here, let me help.
 
I then proceeded to take a wad of paper towels, dampen them under the faucet and clean the woman’s hands. 
 
“Thank you,” the woman whispered.

“Oh. I should have thought of that,” said the man. 
 
“It’s no problem,” I said.  And then I left.
 
The man’s pained expression troubled me for weeks afterwards. I relayed the story to my sister one evening on the phone.
 
“It was awful, to see this man so humiliated, standing there in the woman’s bathroom, trying to help his wife just wash her hands.  He looked so sad, so lost, I don’t know--” I trailed off, unable to articulate what I was trying to convey.
 
“His dignity. He lost his dignity,” interjected my sister (who, incidentally, is not a healthcare provider).
 
Exactly.  She nailed it.
 
The man was robbed of his dignity, that intangible, yet irrefutable, stabilizing core of who we are as humans. Unnecessarily.  In this brand-spanking new comprehensive cancer center with its Zen meditation garden and gourmet coffee bar where on earth was the family bathroom? Where was the wheelchair accessible sink?   
 
Thankfully, the concept of dignity has gained increased attention in healthcare, but we still have a long way to go.  At the inaugural American Society of Clinical Oncologists Palliative Care Symposium an entire general session presentation was dedicated to Dignity Therapy and how we can better honor individual personhood at the end of life. To me, the excellent book Being Mortal by Atul Gawande is really a book about dignity. In it, Gawande describes the U.S. healthcare system as one designed for safety, control, efficiency and the convenience of healthcare providers—all at the expense of a person’s dignity.

Faced with a potentially serious illness we want our healthcare providers to care for us compassionately and competently.  But perhaps even more importantly: we want to be known. To have our individual experiences valued and acknowledged, to have those injecting us with drugs and ordering tests to understand, at least to some degree, the backstories that shape our choices, fears and greatest needs.  To not get swallowed up and funneled into an institutional abyss that sees us as medical record numbers and insurance ID cards.  During one healthcare visit, the physician asked me question after question, but never once made eye contact as she typed my responses directly into a small laptop computer.  I’m sure her documentation was superb; I felt irrelevant.
 
We as healthcare providers (along with policy makers and administrators) must do better. Dignity matters for every patient and caregiver, regardless of diagnosis or prognosis.  It matters in every healthcare encounter.  Preserving patient dignity does not have to involve major, costly interventions (although sometimes it may, like renovating bathrooms). It starts with resisting the socialized norm to institutionalize people and illness and instead asks us to thoughtfully consider how we can best help people feel as empowered as possible in the most difficult of circumstances.  It requires that we see patients as people and ask ourselves, ‘how can I approach this situation to preserve someone’s dignity?  How can I value them as an individual person? How would I want to be treated in this situation?’  These are not radical questions and concepts, but sadly they are often dismissed or forgotten in our current healthcare system. The Patient Dignity Question is a simple, open-ended question to prompt this important conversation: "What do I need to know about you as a person to give you the best care possible?" Imagine how transformative it could be if we routinely posed this question to patients and their caregivers and incorporated the response into our plan of care.  Talk about targeted therapy and personalized medicine!
 
I believe most oncology nurses instinctively understand and incorporate principles of dignity into their practice.  In fact, I would argue this is what nurses in general excel at—honoring the humanity amid illness.  But there is always room to improve. I challenge each of us to be more ‘dignity aware’ and to be more cognizant and deliberate about honoring patient dignity in our daily practice.  Can you recognize situations where a patient’s dignity is being compromised? Do you and your organization take opportunities to preserve dignity for patients and caregivers?  If not, what are the obstacles, and how can you work to address them? Being 'dignity aware' is as important as competence in accessing central lines or safely administering chemotherapy. Perhaps even more so. Just ask the man in the women’s restroom.

Talk about this article with nurses and others in the oncology community in the General Discussions Oncology Nursing News discussion group.
More from Virginia LeBaron, APRN, PhD, FAANP
Sometimes the most productive thing we can do is to stop.
PUBLISHED: Fri January 22 2016
As I patted myself on the back for having no trash to put out for the 2nd week in the row it occurred to me: healthcare needs more of this.
PUBLISHED: Tue September 01 2015
Yes, that dress. The one that blew up social media and has the world squinting over laptops, accusing friends, co-workers, and family members of color blindness as they ask: ‘so, what color is this dress?'
PUBLISHED: Tue March 03 2015
"I'd love to do global oncology work! But I don't know where to start. What should I do?"
PUBLISHED: Mon December 08 2014
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