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 Bringing Closure, Peace When Saying Good-bye

A Pennsylvania-based program raises the bar on end-of-life care.

 

Jerry Pannell welcomed an elderly couple to the Pittsburgh-based nursing center where he is a registered nurse and administrator. He had known them for years. The husband, a pastor at Pannell’s local church, reminisced with his ill wife and rarely left her bedside during her stay. They laughed; they prayed. But husband and wife didn’t discuss the worst-kept secret in the room. 

She was dying from a brain tumor. Her body progressively failing, she had weeks to live. The wife asked nurses not to tell her husband, but he noticed her getting weaker. “It was a conversation neither wanted to have,” Pannell says.

So Pannell and other care team members helped them have the conversation. The team laid out the wife’s prognosis and possible treatment options. They encouraged the couple to confront uncomfortable, yet critical topics. What were the wife’s goals of care? What, at this point, mattered most in the couple’s lives? They decided it was time to go home.

“She spent time with her granddaughter,” Pannell says. “She passed away peacefully, surrounded by family, and her husband and children are in a good place. It was a good death.”

Program Promotes Planning

Pannell shared his experience as part of Closure, an education, planning, and outreach effort launched by the Jewish Healthcare Foundation (JHF) to raise expectations for end-of-life care.

Since 2007, Closure has gathered patients, loved ones, health care professionals, clergy, and policymakers to talk about what’s most important at the end of life and provide the information, resources, and support needed to honor patients’ wishes and values.

“Closure made me look at death straight on,” Pannell says. “It’s a reality of life, and it’s best we prepare for it by making decisions when we are healthy enough to decide what we would like to happen when we approach that time.”

Such decisions are often deferred until a health crisis arises. Seventy percent of Americans over age 65 will use some form of long term care, according to the U.S. Department of Health and Human Services.
Yet, a 2011 National Center for Health Statistics Data Brief found that only 65 percent of nursing home residents have an advanced care directive on record. Without documented treatment preferences, patients may receive painful, unnecessary, and costly treatments that diminish quality of life without extending life.

End-of-life conversations must become a routine, rather than a taboo, subject to ensure patients receive desired care, says Maureen Saxon-Gioia, RN, BSN, senior quality improvement specialist with the Pittsburgh Regional Health Initiative (PRHI), an operating arm of JHF.

“Long term care facilities are moving to incorporate this into daily care of residents,” says Saxon-Gioia. “But we need to do more than identify residents’ goals—we also need to train and prepare staff so they’re comfortable having these conversations.”

Helping patients, families, and providers reach closure requires many things—teamwork, across-the-continuum training, and an appreciation of the spiritual and cultural values that give life meaning.

Palliative Care Nurses Deployed

Since 2008, the Fine Awards for Teamwork Excellence in Health Care have recognized and rewarded western Pennsylvania health care teams taking a collaborative approach to treating patients. The theme of this year’s Fine Awards, sponsored by the Fine Foundation and JHF, built upon lessons learned in Closure by honoring 10 teams helping patients make informed decisions and easing physical, emotional, and financial burdens at the end of life.

The University of Pittsburgh Medical Center (UPMC) Palliative and Supportive Institute (PSI) won the Silver Award by creating interdisciplinary palliative care programs across the continuum and helping seriously ill patients navigate a once-fragmented system.

Previously, hospitalized nursing home residents rarely met with a clinician specially trained in palliative care.

Providers had no consistent, reliable way to know whether a hospitalized resident had been consulted about palliative care during a previous hospital admission. Upon discharge, nursing home staff often struggled to meet the increasingly complex needs of their residents.

“Our nurses treat chronically frail patients,” says Denise Stahl, RN, MSN, PSI executive director. “We’re talking acute change in mental status, a fall, an infection—things that if there’s not a higher level of resources, staff often had no option but to send the patient back for possible admission.”

To reduce resident transfers, PSI deployed nursing practitioners (NPs) trained in a combined palliative care/geriatric curriculum at each facility. The NPs coordinate care for residents, facilitate goals of care meetings, document treatment wishes, and contact hospitals when patients are admitted or discharged.
The NPs also train other staff in palliative care and lead quarterly educational sessions where all team members explore subjects ranging from comorbid health conditions to symptom management, to pharmacology. Staff now collect the same data on pain management and palliative care conversations, and a revamped information technology system alerts the care team when patients are readmitted.

Transfers Reduced

PSI’s interventions reduced unplanned transfers from UPMC communities (from 5.9 per 1,000 resident days in 2011 to 2.1 in 2013). Patients who received palliative care and passed away in 2012 were better able to control symptoms (87 percent satisfaction in the first quarter to 94 percent in the third quarter) and felt their input was valued (89 percent to 97 percent).

“Our staff always want to do the right thing,” says Bob Arnold, MD, PSI medical director and a committee member of the Coalition for Quality at the End of Life, a consortium of stakeholders dedicated to improving end-of-life care across Pennsylvania established and steered by JHF.

“The goal is to give them the training and resources to do the right thing.”

Frontline education and teamwork were also crucial for Fine Award finalist Kane Regional Center in Scott Township, part of a four-site skilled nursing and rehabilitation network.

Nursing, social services, and health care providers rarely discussed advanced care options with residents or relayed those conversations to other staff. Physician Orders for Life-Sustaining Treatment (POLST) forms often documented a resident’s cardiopulmonary resuscitation preferences, but little else.

To facilitate advanced care discussions, the center trained doctors, nurses, social workers, and dietitians on the POLST paradigm, hospice criteria, enrollment and services, and ways to identify residents with a higher risk of mortality.

A multidisciplinary team holds regular care conferences with new residents and those with a change in health status and notifies the attending doctor of the consult.

“When people are working in an isolated fashion, it’s hard to develop a plan and form a consensus on goals of treatment,” says Mario Fatigati, MD, chief medical officer of the Kane centers. “But when you do it in a multidisciplinary fashion, you’re going to have meaningful conversations with patients.”

The center’s work led to an 80 percent increase in advanced care discussions for high-risk patients and a 23 percent decrease in resident emergency room visits and hospitalizations. Fatigati plans to expand the center’s program to the other three network sites.

“End of life has to be part of the culture,” Fatigati says. “It defines the complete goals of treatment and provides families and patients with options so they can make informed choices.”

Acknowledging Grief

Making end-of-life conversations part of the culture requires more than enhanced clinical skills and streamlined care—it also requires providers to understand residents’ world views and process their own losses when a resident passes away.

Pannell’s center is part of the Jewish Association on Aging (JAA), which has offered social, residential, rehabilitation, and nutrition services in accordance with Jewish values for over a century. Most of the staff participating in Closure were non-Jewish, so Pannell arranged for Rabbi Eli Seidman, JAA’s director of pastoral care, to discuss how spirituality influences views on death.

“People saw that being religious doesn’t necessarily mean that you pursue every last treatment,” says Jonathan Weinkle, MD, who facilitated JAA’s Closure sessions. “But it does give priority to comfort and dignity—preserving life without being made to suffer more than you can tolerate.”

Frontline workers at JAA are better able to recognize changes in a resident’s health, Pannell says, thanks to coaching and quality improvement training provided through the Long-Term Care Champions program, a JHF initiative to reduce unplanned transfers in skilled nursing facilities. The talks on spirituality helped staff see the resident as much more than their condition.

“We’re comfortable broaching these subjects,” Pannell says. “We know where residents and families are coming from.”

It’s Personal

JAA’s Closure sessions have also encouraged providers to share stories about the bonds formed with residents and the sorrow experienced when a friend moves on.

“We know these people intimately,” says Nadine Kruman, JAA’s care navigator. “How can you not form an attachment when you care for them daily for months or years? Sometimes you need a shoulder to lean on.”

Sivitz Jewish Hospice and Palliative Care, part of JAA, is lending a shoulder in a health care environment that rarely acknowledges the effect of a patient’s death on workers.

“When someone passes away, nurses often suppress their grief and move on to the next patient,” Pannell says. “That’s not healthy. So now, our hospice has volunteered to send over their grief counselor to help our staff come to terms with their loss. Giving both the staff and family support leads to the best outcome for the patient.”

David Golebiewski is communications specialist at Jewish Healthcare Foundation/Pittsburgh Regional Health Initiative/Health Careers Futures, Pittsburgh. He can be reached at (412) 594-2553.

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