Patient- and Family-Centered Cancer Care

Madison, Wisconsin – What is ideal cancer care?


At the UW Carbone Cancer Center symposium, "Cancer: Testing the Family Bond," that question was posed in a unique and increasingly relevant way. Ideal cancer care certainly involves the complete and competent address of physical ailment, but it doesn't stop with the surgeon's scalpel, the radiologist's MRI readings, or the chemotherapy dose.


Ideal cancer care is patient- and family-centered care, which is "an approach to care that's grounded in mutually beneficial partnerships with patients, families and health care," said Beverley Johnson, President/CEO, Institute for Patient- and Family-Centered Care.


In her work, Johnson has talked extensively with cancer patients and their families, and she's found that their greatest concerns involve information.


"They want practical, useful information in a way that works for them, that has meaning for them," Johnson said. "We need to share information with patients and families in ways they find useful and affirming."


It's a seemingly simple tenet that in practice is changing the way health care is organized and delivered. Providers must rid themselves of the notion that they're doing something to or for patients. Instead, patients and their families should be considered part of the care team, which might be more accurately described as the care environment.


"It's about respecting patients' and families' choices for participation and encouraging and supporting their involvement," Johnson said. "We get better clinical outcomes when patients and families are actively involved in their care, so we have to connect where patients want us, at the level they choose."


That connection is built upon the four principles of patient- and family-centered care: respect and dignity, information, participation in care and decision-making, and collaboration amongst patients and providers.


It can be as simple, Johnson said, as asking the parents of a young cancer patient if they know how to change the bed sheets in a way that's most comfortable for their daughter when she's at home.


And it can be as ambitious as involving patients' families in the design details of a new cancer institute by asking them to describe the type of physical structure they'd bring their child to for care.


"Patient perspectives should guide system redesign," Johnson said. "The partnerships I'm talking about are when patients work side by side with physicians and staff. There's an amazing opportunity to bring different perspectives to the table and build ideas together that mutually work for everyone."


Johnson mentioned an Emory Health Care initiative as an example of an effective collaboration between patients and care providers. Patients had complained of a disconnect during shift changes. The doctors and patients who were taking care of them disappeared, to be replaced by different clinicians without introduction or smooth transition.


"'They were all over there, talking about me, and I had no idea what they were saying. I felt isolated,'" Johnson reported one patient as saying.


The solution? Emory instituted bedside shift changes, and placed invitations on tables next to the beds to encourage patient participation.


That small change in behavior opened up a new avenue for communication and resulted in higher patient satisfaction scores and even reports of increased morale amongst unit nurses.


Programs with a similar, patient-centered focus are popping up all over the country. The H. Lee Moffit Cancer Center in Tampa solicits patient input with invitations to coffee hours and has a newsletter edited by patient and family advisors. The Dana Farber Cancer Institute in Boston asked for patient and family counsel in the reorganization of its pain management team. And the Harvard Medical Center has patients with severe illnesses teach a class about communicating with patients to first-year medical school students.


The UW Carbone Cancer Center has embraced a patient- and family-centered care approach, as well. More than 70 of UW Health's executives and patient and family advisors have attended the Institute for Patient- and Family-Centered Care, and the organization has instituted a number of initiatives as a result.


A patient's primary support person is identified and given a badge so all hospital staff know they, unlike other visitors, are welcome to stay with the patient day and night, without restriction.


Patients sit on safety and quality committees and speak to new employees during orientation, and patient input is sought for all construction projects.


"We truly partner with our patients and their families," said Stephanie Orzechowski, the Carbone Cancer Center's director of clinical oncology services.


Orzechowski also said that during the design and construction of a new cancer clinic, one patient attended every architectural planning meeting. He suggested placing recliners in the waiting room to improve patient comfort, and a vent above the coffee machine, because the aroma sometimes bothers patients undergoing chemotherapy.


"I believe we designed a better clinic because of his input," Orzechowski said. "Because he was a patient he had a perspective that the rest of us can only guess at. He was able to guide us to design that clinic in a different, better way."


Which is an example of focusing on the one word that explains this new era of cancer care.


"With," Johnson said. "Does your organization have that word? With is the expectation in all phases of cancer care."

Date Published: 10/22/2013

News tag(s):  cancer

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