UVA Promotes a Better Way to Live and Die

Nov 28, 2018

Ken White and Clareen Wiencek
Credit University of Virginia

As Baby Boomers move through their senior years, experts say we’re spending big bucks on medical care, often without improving quality of that life. That’s why nursing students at the University of Virginia are getting more training in what is known as palliative care.

When I met 59-year-old Teresa Friend, she was waiting for an ambulance to take her to hospice.  For months she’d been treated for esophageal cancer, and during that time – still very much alive – she got palliative care to keep her comfortable, and allow her to do the things she still wanted to do. 

“I would feel so disheartened, I would feel really lost if I didn’t have people to talk to about this, and not just try and pretend that you’re going to get better when you know you’re not,” she says.

Palliative care is a multi-disciplinary mission that combines medicine, psychology and spiritual support -- all focused on the patient.  Doctors may be too busy diagnosing disease and plotting medical strategy. Not so nurses like Ken White, an associate dean who spends one day a week as a palliative care nurse-practitioner. 

He might adjust medication to better relieve pain, listen to patients’ worries, and talk frankly with them about death, or the conversation might be light – like the time Friend was desperate for a popsicle.

“Ken went everywhere in the hospital to find me a popsicle," she recalls. "Nobody else would have gone to that trouble, and he did it for me.”  

“It had to be the ones in the plastic sleeve,” he adds. “She wanted the one with the stick, so I found them --  I just took them out of the freezer, and then I put them in the 3-East freezer with her name on them.”

“That was a wonderful day,” Friend says with a smile.  “I can’t tell you how much I enjoyed that popsicle.”

Palliative team members also serve as a bridge between families, the medical team and the patient.

“At the most intimate time of their lives we’re invited in to this space that’s packed with fear, worry, longing for what I’ve left undone, longing for hope, longing for a miracle,” White explains. “Sometimes it’s about turning hope from hope for a heart that I had when I was 20 to hope for all my family being able to get here.  The miracle might be not that they snap out of it.  The miracle might be that that long lost son who has never made peace with the dad shows up.”

And he counsels family members – uncertain what to say.

“You need to say, ‘I forgive you for whatever.  I hope you’ll forgive me for whatever.  Thank you.’  If you can’t think of anything to thank them for, thank them for having you.’  And then, ‘I love you,’ which is more difficult for some people.” 

Even if a relative or friend is near death, even if they’re not conscious, he suggests loved ones tell them it’s okay to die.

“‘Don’t hang on for us.  We’ll be sad, and we’ll miss you, but it’s okay.’” 

He strongly believes that some people have the ability to control their time of death.

“The number one predictor of a person’s end days is the will to live. A person can prolong their life if they have a special event.  I’ve propped people up for weddings.  I’ve gotten people home, because they wanted to die at home, and as soon as they got home they did.” 

Part Two

Some people choose to study medicine, because they hope to make patients better – to prevent or cure disease, but a growing number of students are looking at another goal – helping patients to live well with chronic illness and to die with dignity and in comfort.

Ken White is an Associate Dean of Nursing at the University of Virginia – but he takes one day a week away from administration and teaching to provide palliative care as a nurse practitioner. 

“We can keep people alive longer, but at what cost to the quality of life?” he wonders. 

It’s not hospice – which is reserved for people at the end of life – but a kind of care provided to people suffering from chronic conditions.

“Palliative care can be offered to any person with any serious diagnosis, at any phase of their illness -- somebody focusing on their goals, what’s important to them, relieving whatever is most bothersome to them,” says nursing professor Clareen Wiencek.

The key to providing effective palliative care, according to UVA nurse Meg Barclay, is to ask questions and to listen.

“Listening to what gives them joy, listening to what they see their life unfolding as. It’s trying to maximize how well they do – as long as they can do well,” she explains.

The patients may have heart trouble, incurable cancers, lung disease or dementia.  Some need relief from pain, but Clareen Wiencek says other symptoms can also spoil quality of life.

“A more common symptom is fatigue – just an overwhelming, in their bones fatigue where they can hardly get out of bed.  Another one is shortness of breath where, again, they can’t even get out of a chair or go to see their grandson’s soccer game or something like that.”

About a third of doctors and nurses already provide palliative care without any special training. As a resident specializing in internal medicine, Dr. Sumner Abraham says palliative care makes a huge difference.

“I was amazed what an impact it makes.  It totally revolutionized the relationship that our team had with the patient.”

But Liane Okada, who has spent five years nursing in the ICU, says training is key to effective palliative care.

“I’ve seen it done well.  I’ve seen it done not as well, sometimes not all, brought in too late sometimes, but again  when you’ve seen it done well, it’s really inspiring.”

She joins Rachel Ostberg, Sara McClelland and Jazmynn Orellana-Noia who have also enrolled in the first of two graduate nursing courses on the subject.

“I personally am comfortable talking about end of life, but I know it’s still taboo in our culture, and that’s another big thing learning how to cross those barriers,” Ostberg says. 

“Medical science is coming so far, and our technologies are huge, and we’re saving kids and helping them survive against insurmountable odds, but with that they are left with many chronic needs,” says McClelland.

“I work in the ER currently,” Orellana-Noia explains, “and a lot of patients are diagnosed with cancer, and they think it’s over.”

A palliative care team could emphasize that life will go on – sometimes for years – and they’re there to make it as comfortable and enjoyable as possible.

Graduate nursing student Ariana Staffen hopes to help patients make good decisions about their treatment – decisions that may result in lower overall costs and less suffering.

“You hear a lot about patients who didn’t understand all of the options that they were presented with. Maybe they got a surgery that was really hard on their body. Maybe they didn’t have to do that.  We could have kept them comfortable with medicine and less probing interventions,” she says.

Experts say 90 million Americans are living with a serious illness, and that number is expected to grow over the next 25 years, so it’s a safe bet that demand for palliative care professionals will grow.