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Tuesday, January 21, 2020  

End of life study ongoing at Kaiser PermanentePublished 12/22/2004

by Mike Lee

Staff Writer

When it comes to how a person wants to do, everybody is different.

That’s what licensed clinical social worker Becky Niemeyer is finding out from the nurses who work with patients who are nearing the end of their life.

The Effectiveness and Efficancy of the Advanced Illness Coordinated Care Project is ongoing at Kaiser Permanente Colorado and in three other regions in the healthcare system.

Niemeyer said the study started consenting patients in July of 2003 and should be finalized by the middle of next year.

In a nutshell, everyone wants to die in their own way. Some want round-the-clock care from the best nurses and physicians in a hospital setting. Others want family members to take care of them as they finish out their lives.

Finding this balance, and finding a cost effective way to meet the patient’s dying needs is the goal for Niemeyer and the nurses she works with.

"Here in Colorado, the desire has been to improve the range of services for palliative care through the region and the different settings," Niemeyer said. "There has been research on the best way to do that."

The research is a clinic-based project with patients coming in to talk with nurses on a regular basis. The patients are neither home-bound nor hospitalized, which broadens this particular study.

The patient’s condition makes it possible for them to have a greater say in how they choose to pass.

"A lot of the people I work with are pretty functional and in fact there is no real, clear prognosis people have to meet to be able to meet during the study," Niemeyer said.

The only common denominator for these people is that they are dying.

An intervention group and a control group of more than 150 has been established, with Niemeyer having seen about half of those in the intervention group.

"We cover a lot of different issues," she said. "They are related to getting to know that person individually and what their psychosocial needs are related to their illness. Every person is unique and even among those with COPD (Chronic Obstructive Pulmonary Disorder) their response to that is unique."

"We run through a number of concerns – communication with healthcare providers, family adjustments, family needs. This might be needs inside or outside of Kaiser. We try to determine what their needs are and match them with programs.

"The whole intervention is really a value-based and empowerment based intervention."

Giving someone control over something they ultimately are powerless against can be an amazing experience for some patients, Niemeyer said.

Niemeyer said she works closely with nurses who work with these patients to see what their individual needs are. Sometimes the patients open up more to Niemeyer and reveal something they might not to a nurse.

"I do a lot of reporting back to the nurses," she said. "The report goes back to a nurse or doctor. Sometimes people are nervous about bringing something up.

"When the members feel like they are really being listened to and they get a quick response back from a nurse on a question I relayed to them or a symptom they told me about … I think both for the member and the nurse the relationship is enhanced.

"One of my main jobs is to facilitate communication and keep it going and make sure nothing falls through the cracks."

Niemeyer said one of the advantages she has is being able to spend more one-on-one time with a patient.

"Nurses are busy and they have a huge caseload," she said. "I’m able to focus on a few members and am able to make the job of the nurses easier."

For Kaiser Permanente, the health system is looking at the effectiveness of an intervention program and seeing whether or not a program should be implemented.

A social worker since 1998, Niemeyer said she became interested in counseling back in high school. In college, she started out as an English major before finally pursuing her passion.

Seeing people who are near the end of their life and how they deal with that has given her a different perspective.

Finding out what dying with dignity means is different in every person. For some it’s spending their final days at home with a loved one. For others, dignity is seeking out an aggressive care plan and fighting their illness up until the final moments.

"That means different things to different people," Niemeyer said. "It’s all a matter of identifying for each individual what’s important at the end of their life."

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