Beyond The Last Lecture

For Randy and Jai Pausch, nurses displayed humanity at its best.

For Randy and Jai Pausch, nurses displayed humanity at its best.

By Amy McGuire

Editor's Note: Randy Pausch was a 45-year-old computer science professor at Carnegie MellonUniversity in Pittsburgh when he was diagnosed with terminal pancreatic cancer in August 2006.His inspirational book about living life to its fullest, The Last Lecture (2008, Hyperion), became aNew York Times best-seller. Pausch died of complications July 25, 2008. In an ADVANCEexclusive, regional editor Amy McGuire talks with Pausch's widow, Jai, who shared her own storyabout those who "live in the moment" - the nurses who cared for her husband. After reading thearticle, participate in a blog discussion.

Randy Pausch, 47, died last year after a 2-year battle with terminal pancreatic cancer. Ultimately he lived longer than his

prognosis, because in dying, he inspired others to live.

For Pausch and his wife, Jai, most of their final days together weren't so magical. Jai stood by her husband's side at several

healthcare facilities spanning five states, in search of the best treatments for Randy's disease; and nurses were always there

supporting them.

"From the very beginning, all the nurses we met were caring, competent and sympathetic," said Jai. "I know they had their own

issues to deal with, but they didn't let their own personal issues interfere with Randy's care."

'In the Moment'

This includes the nurses at the University of Texas M.D. Anderson Cancer Center in Houston, where Randy received "the bulk of

his chemotherapy and radiation treatments." One of the M.D. Anderson nurses taught Jai how to flush her husband's PICC line

even though she admits being "very squeamish about blood and needles" prior to Randy's illness.

"I didn't have any medical training; however, the nurses taught me how to give Randy his chemo shot once a week, although

eventually he started doing it on his own."

Recalling when Randy needed to undergo a procedure at the University of Maryland Medical Center in Baltimore, Jai

remembers a radiology department nurse whose skills she compared to an artist.

"Randy hated to have his blood drawn or an IV put in because it was so painful and caused him so much anxiety," she said.

"This nurse was so patient. She studied Randy's arm like a sculptress studies art. She used a warm towel compress, and very

gently and slowly put the IV in on the first stick. He felt so much peace; his anxiety went way down. We had so many positive

experiences like that."

The common quality of all the nurses was their ability to be "in the moment," Jai said, much like the central theme of her

husband's book The Last Lecture.

Though nighttime hospitalization was frustrating for him, Randy's experiences with the nurses on one shift at M.D. Anderson

showed Jai the true spirit of their profession.

"Randy was so sleep-deprived," she said. "He was an incredible grouch and even put

a 'Do not enter! Refuse all services!' sign on his door. Randy knew one-tenth of what

the nurses did, but told them 12 ways they could be doing their job more efficiently.

"One night, Randy asked the nightshift nurse to do his vitals at midnight rather than 3

a.m. and the nurse said, 'OK. We understand and we can make this happen for you.' It

was no longer the nurses' constraints versus Randy's desires, but a true partnership.

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Michelle Reiss, PhD, RN, CS,

assistant director at the University of

Pittsburgh Medical Center School of

Medicine, helped Randy and Jai

Pausch cope with the psychosocial

affects of his terminal i l lness.

Read more about her.

Drive to Stay Alive

That feisty spirit pushed Randy to write The Last Lecture in October 2007, which Jai

said was therapy for him.

"The project kept him really busy," she recalled. "But once the book was done (in

January 2008), he was done. His quality of life was going downhill. The gemcitabine

stopped working."

Randy had been taking gemcitabine, a nucleoside analog, and Tarceva (erlotinib

hydrochloride) - drugs designed to block tumor cell growth - in an effort to "buy more

time," Jai said. "Gemcitabine works for a lucky 7 percent of pancreatic cancer patients.

Randy began focusing on a 'magic bullet,' but he was becoming so fragile."

Jai said Randy was determined to stay abreast of new cancer research and would call

his physicians regularly for hopeful news.

Preparing for the End

In September 2007, the couple and their three children decided to relocate to

Chesapeake, VA, so they could be close to Jai's family when it came time for Randy to

receive palliative care in the final months of his life. His oncologist referred him to

Sentara Healthcare.

There, the Pausches met Wanda Wyatt, RN, CHPN, clinical supervisor at Sentara Healthcare. Wyatt introduced the couple to the

agency's "bridge" program, which is designed to assist patients who have received a terminal diagnosis with a life expectancy

of 1 year or less. The program protocol allowed Randy to receive the benefits of hospice care while continuing to pursue

aggressive treatment for his illness.

"The bridge program eases the transition from curative to palliative care, and is a way for patients and caregivers to accept the

terminal diagnosis," Jai said. "It also provides support to maintain the best possible quality of life in emotional, social and

spiritual well-being."

The Last Lecture by Randy Pausch - Audio Interview with Jai Pausch:

Help When Needed

Jai quickly formed a bond with Wyatt, who has more than 30 years

experience as a hospice oncology nurse.

"Wanda knew where Randy's quality of life was," she said. "She

helped me make decisions I needed to make."

Wyatt explained the first step of home health/hospice/palliative care

is building a relationship of trust and respect with patients.

"The best gift is the gift of time, simply being present with the

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While her husband Randy was receiving pall iative care

treatment at Sentara Healthcare, Chesapeake, VA, Jai

Pausch (right) said Wanda Wyatt, RN, CHPN (left), was "by

my side every step of the way." (photo by Dale Gauding)

patient," she said. "That is the perfect course of care."

The Pausches were most impressed with how Wyatt was

determined to improve Randy's daily life despite his condition, Jai

said.

"She was good with Randy's personality," Jai recalled. "Wanda didn't

let him set the rules. She would say, 'I respect your opinion, but here

are other ways of doing this.' She never pushed her agenda; Randy

respected that about her."

When the side effects of the chemotherapy became more pronounced, Jai also saw the depth of hospice nursing, notably how

staff managed her husband's pain and the 18 medications he was prescribed.

"I learned there's a real strategy with how to manage the complexity of the daily, weekly and 'as needed' medications to combat

the side effects of the destruction caused by chemotherapy," said Jai.

In the final weeks, she called Wanda every day, sometimes twice.

"Randy experienced so many changes during his last week," Jai said. "It was a delicate time balancing the kidney and heart

medications because of swallowing difficulties. His pain was worsening because he couldn't take any pain pills and he wasn't

officially in hospice at that point. I couldn't assess where he was. I felt like I was walking down a dark tunnel and thinking, 'Are

we at the end?' My guiding light was Wanda."

Learning to Let Go

The Monday before he died, Jai could tell Randy's health had taken a turn for the worse.

"By Thursday, Wanda said it was time," said Jai. "She started cutting down on Randy's meds and grinding the pills in liquid form

to put in applesauce. I felt like I was dancing very fast and the music just kept changing."

"During the last few days of his life, Randy experienced tremendous edema of his abdomen and legs, which was a source of

much discomfort to him," Wyatt said. "He was anxious, sleepless and a bit more irritable. In the last 48 hours, he had nausea,

vomiting and increased pain."

And it was also a time when Jai felt grateful that Randy and Wanda had developed such a strong nurse-patient relationship.

"At that point, we officially enrolled Randy in hospice care for the last 24 hours of his life," said Jai. "Because Randy had grown

to trust Wanda so much, for the first time, he didn't argue."

To help them cope, Wyatt shared a book, Gone From My Sight, by Barbara Karnes, RN, which provides a step-by-step guide to

the dying process, Jai said.

"I went through the book page-by-page to show Randy where he was in the dying process," she said.

In her book, Karnes explains the "letting go" in accepting death: "How we approach death is going to depend upon our fear of

life, how much we participated in that life, and how willing we are to let go of this known expression to venture into a new one.

Fear and unfinished business are two big factors in determining how much resistance we put into meeting death."

(Read more about Michelle Reiss, PhD, RN, CS, a nurse who helped the Pausch family deal with the psychological effects of

pancreatic cancer.)

Jai said Randy died knowing he did everything he could to live.

"He had no regrets," she said. "He died knowing the medical community did everything they could. He was grateful he lived long

enough to see our daughter turn two."

Amy McGuire is regional editor at ADVANCE.

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