Nurses Engage Family in Care Decisions

Patient-centered care is a term that we’re hearing more and more. It was originally coined by the Picker Institute to describe a model of care that actively involves patients and their families in treatment decisions.

Studies have demonstrated that involving the patient and family as partners in care planning improves patient satisfaction and decreases length of stay (Hickman, et al., 2007; Walker, Hogstel, and Curry, 2007). It’s a concept that has been strongly supported by nurses and healthcare organizations seeking a more inclusive approach to improving the outcomes and experiences of patients and their families.

One such organization is Nurses Improving Care for Healthsystem Elders (NICHE), a program at New York University College of Nursing designed to help hospitals improve the care of older adults. NICHE’s mission is to provide principles and tools to stimulate a change in the culture of healthcare facilities to achieve patient-centered care for older adults. NICHE-designated hospitals have found their relationship with the NICHE program to be helpful in improving their ability to deliver patient-centered care.

NICHE recently collaborated with AARP, a premier advocacy group for older adults. AARP also supports patient-centered care. Susan Reinhard, PhD, RN, is a senior vice president for Public Policy at AARP and director of AARP’s Public Policy Institute-a group that develops policies to improve healthcare for older Americans. As a nurse, Reinhard believes that nurses and other healthcare providers need to actively seek out caregivers and understand the importance of including them in care decisions because, in most cases, it’s the caregiver who is the decision maker.

“When you’re talking about a patient with chronic conditions, typically a family member or friend is helping that person,” Reinhard explains. “They’re coming into the hospital and visiting. They’re engaged. Healthcare providers need to listen to them. If they don’t, they are looking at a 1 in 4 probability that the patient will be readmitted.”

When that happens, the patient has deteriorated, the family feels guilty, and the organization may not receive Medicare reimbursement to cover the readmission. Nobody wins.

A report supporting this statistic was published by the Robert Wood Johnson Foundation, a leading philanthropic organization dedicated to improving healthcare. The report affirms that “patients, families, friends, and the entire community have a role to play in transitions and reducing avoidable readmissions.” (Robert Wood Johnson Foundation Policy Brief. “Improving Care Transitions,” September 2012). The foundation set the cost of poorly managed care transitions that resulted in avoidable complications and unnecessary hospital readmissions at $25-$45 billion in 2011. Discharge planning, which should involve the patient and family members, is a major contributor to efficient care transition from the hospital setting to home.

To better understand the caregiver’s needs, NICHE and a number of other healthcare organizations have championed the creation of patient and family advisory councils (PFACs), which provide a formal structure to ensure that care providers hear the voice of the patients they serve. Many of the first PFACs were implemented in children’s hospitals and pediatric or neonatal units. However, the movement has expanded to include adult patients and family members in healthcare decision making.

PFACs have done much to advance patient-centered care. These councils provide a platform for healthcare organizations to partner with previous and current patients and family members to obtain ongoing input on how to improve care. A PFAC examines the processes and the services that the hospital provides, offering patient and family perspectives that may vary widely from those of care providers. Hearing the patient’s point of view can reveal issues that care providers had not considered, consequently enabling them to make the hospital experience better.


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Carolinas Medical Center-Mercy: Differentiating Through Patient-Centered Care

In 2007, Phyllis Wingate Jones, MHA, FASCHE, then the president of Carolinas Medical Center-Mercy in Charlotte, N.C, was looking for a way to differentiate the hospital and found it by focusing on patient-centered care initiatives.

Carolinas Medical Center-Mercy sought and earned Planetree designation – recognition for meaningful progress in patient- and family-centered care – less than three years later. Planetree’s philosophy is based on a simple premise: Care should be organized first and foremost around the needs of patients.

Chief Nurse Executive Janet Handy, MSN, RN, NEA-BC, FACHE, explains that “Planetree was able to provide structure for what worked and what didn’t in how we approached patient- and family-centered care principles. Both Handy and Maureen Fogle, EdD, RN, NE-BC, director of Nursing for Professional Practice, have been champions for bringing patient-centered care to Carolinas Medical Center-Mercy.

The journey has demanded a serious commitment and has brought about a major culture change across the organization. Fogle explains that “engaging the patient and family in care has always been part of our philosophy, but we have taken it to the next level because our nurses assumed the role of change agents by embracing bedside report and shared medical records, both of which are tenets of the Planetree philosophy.”

As part of its patient-centered care initiatives, Carolinas Medical Center-Mercy supports a PFAC. The council – named the Community Advisory Council – is comprised of former patients, family caregivers of patients, and members of the community who have an interest in healthcare. The council has offered feedback on a myriad of issues – from the initial hospital letters on bedside report and the shared medical record that were sent to patients and family members to ways to showcase the benefits of the electronic health record in gathering critical health information.

Fogle notes that “although the feedback is not necessarily always what we expect to hear or want to hear, it’s what we need to hear about patient needs.” Council members have been a valuable source of knowledge. “What I really enjoy about this council is the members’ intent to make us better,” she says. “They’re really honest.”

About the same time that Carolinas Medical Center-Mercy was instituting patient-centered care initiatives, the hospital administration committed to becoming a senior-friendly facility. Roughly 50% of its patient population is made up of seniors. Seeking NICHE designation was the next logical step.

Because of a commitment to funding and educational infrastructure on the part of the hospital, 14 nurses received formal training in geriatric care through NICHE webinars and other evidence-based tools. Nurses completed the curriculum to become geriatric resource nurses (GRNs). In turn, they helped to educate their colleagues about evidence-based practices to incorporate into the patient’s plan of care. The entire hospital staff received a one-hour hands-on simulation class in caring for older adults in the hospital setting, an effort that earned them a community award from the Mecklenburg Council on Aging.

Carolinas Medical Center-Mercy became a designated NICHE hospital in 2011 and is participating in a project with NICHE and AARP to develop a family caregiver toolkit. “Having this relationship with NICHE has been valuable for us because of the caregiver focus that is critical to the successful transition of the patient,” says Handy.

Handy emphasizes the depth of the commitment needed to bring about a culture change of this magnitude because it requires nurses to perform in new and different roles – to round, to evaluate, to make patient-centered care a priority. “Going forward,” she says, “the need is going to be taking up the cause of older adults and their caregivers both inside and outside the hospital because this is the population we will be serving.”

Patients have noticed the culture change and offered positive feedback. Patient and nurse satisfaction scores at Carolinas Medical Center-Mercy have exceeded national benchmarks since the hospital’s patient-centered care initiatives began. Not all of the increase can be directly attributed to the Community Advisory Council’s work and NICHE designation, but administrators believe these initiatives deserve a fair share of the credit.

University Hospitals Case Medical Center: A Passion for Engaging Patients and Families

At University Hospitals (UH) Case Medical Center in Cleveland, patient-centered care has become a passion, especially for Caryl Eyre, MSN, RN, medical-surgical clinical nurse specialist, and Janet Kloos, PhD, RN, CCRN, cardiology clinical nurse specialist.

About six years ago, Kloos, who was already interested in patient-centered care, listened to a presentation by Beverly Johnson, president of the Institute for Patient- and Family-centered Care. Johnson talked about expanding the work that had already been done in the UH Rainbow Babies and Children’s Hospital to make the patient care experience more open by allowing rooming in and including family members in rounding. Kloos recalls, “I remember thinking that wouldn’t patients of any age want a family member involved in their care?”

Eyre and Kloos had been working on improving visitor waiting in their ICUs. They conducted a survey to study how they might become more family friendly. The results helped them revise the visiting policy and make their waiting rooms more welcoming by including amenities for family members.

An outgrowth of their work in this area-coupled with what they had learned from Beverly Johnson’s presentation-spurred them to move quickly toward developing a PFAC focused specifically on medical-surgical patients. The hospital now has three councils: the pediatric family advisory council begun 20 years ago, the medical-surgical council launched six years ago, and a third council established three years ago when the hospital opened its Seidman Cancer Center. Eyre and Kloos spearheaded the medical-surgical PFAC and continue working as its co-facilitators.

Recommendations from council members to improve accessibility, communication, and coordination of care have led to significant improvements at UH Case Medical Center. Some of the council’s work has included updating the visitation policy, serving as a focus group for the electronic health record, providing feedback in selecting patient telephones, revising the hospital-acquired infection education sheets, and reviewing and updating the stroke, heart attack, and diabetes teaching books.

“Our council is particularly thoughtful about feedback,” Eyre explains. “Council members take it seriously, and they offer ideas that people here may not have thought about before.”

UH Case Medical Center recently earned the AHA McKesson Quality Award. The appraisers noted that the hospital’s impressive patient-care initiatives played a role in granting the award.

According to the Institute for Patient- and Family-centered Care, perspectives from patients and families are necessary in all aspects of patient care, but especially in the care of the elderly. Like most health systems, UH Case Medical Center has a high patient population over 65 years of age. Initially, more than 60% of its council members were older adults who could offer insights specific to this patient population.

As part of its effort to deliver the highest quality patient care to older adults, UH Case Medical Center also sought NICHE designation. NICHE’s focus on patient-centered care aligns perfectly with the hospital’s patient care model. The focus on improving care for older adults began in concentrated areas within the hospital but is now expanding with the intent of bringing NICHE principles to additional patient areas.

NICHE resource materials have helped the hospital to improve its discharge process and, in particular, treat patients with dementia. “We’ve looked at developing resources-dementia kits, diversionary activities, and such – and NICHE has been a valuable resource for us,” Eyre says.

One message that has come through clearly is the importance of listening to what patients and family members have to say-an effort that has contributed to improvements in the hospital’s patient satisfaction scores. “I think we’ve changed the culture,” Eyre says. “We’ve become known for asking the question, ‘Have you asked the patient or the patient-family advisory council about this?'”


Consumer-Driven Healthcare

Patient engagement is critical to meeting quality initiatives.

St. Mary Mercy Hospital: Special Interest for Senior Services

As part of its organizational strategy, St. Mary Mercy Hospital in Livonia, Mich., formulated a PFAC specifically to serve the needs of its senior patients and to ensure that the voice of these older customers was heard.

St. Joseph Mercy Hospital in Ann Arbor, a sister hospital, had begun a push for patient involvement-beginning with a parent council for its neonatal population. The person who led that effort assembled a task force in mid-2010 to look at how the organization could become more patient-centered.

Carrie Hays McElroy, MSN-HCA, RN, was brought into that task force. McElroy is the senior service line administrator/director of case management and NICHE coordinator at St. Mary Mercy Hospital. “One of the outcomes of those discussions was that we needed to commit to an advisory council,” she recalls.

The council was launched later the same year. A number of patients and family members were invited to join. McElroy was working with an Alzheimer’s support group at the time and invited some of its members as well. “I explained that we were moving in a direction of improving the care we provide and that we needed input from people like them,” she says.

The council fulfills three functions:

  • It provides an avenue to hear the voice of the customer.
  • Hospital staff comes to the council to share new initiatives, programs, and materials that are being developed that relate to older patients and obtain feedback.
  • Council members act as ambassadors for new hospital progra

The council has provided input on the hospital’s Care Transitions Program, which involves having coaches follow patients for 30 days after discharge to reduce readmission rates. “We have changed and modified programs and tools based on the council’s input,” McElroy says.

As the council has progressed in its journey, its scope has broadened from an initial focus on patient safety issues to include input on service delivery-the care and compassion side of health care.

About the time that the hospital was formalizing its senior service line structure and introducing a number of new services for the senior population-including the first ever senior ED in the area-the organization sought NICHE designation.

For St. Mary Mercy Hospital-whose patient population is an average of 10 years older than the population that the typical acute-care hospital serves-NICHE was a perfect fit. Among other functions, NICHE provided resources to understand patient-centered care and to operationalize it. In fact, McElroy created NICHE’s organizational strategy that provides guidance to other hospitals in developing a PFAC and recruiting council members. The tool also provides a roadmap for implementation and evaluation.

NICHE designation gives hospitals, nurses, and other staff access to NICHE staff education modules, assessment tools, and organizational strategies to improve the staff’s ability to work with families, patients, and hospital administration.

“NICHE is about nurses improving care to elders. It supports patient-centered concepts by sharing information among organizations,” McElroy explains. Being a NICHE-designated organization allows access to the resources available through the NICHE website. “We showed our PFAC members some of the NICHE resources for patients and caregivers, and they encouraged us to include this information in our information guide,” McElroy explains. She firmly believes that the work of the PFAC and the NICHE program go hand in hand. “How do you know how to improve care if you don’t hear the voice of the people who are using your service?” she says. “Having a council that is closely related to NICHE is essential.”

Some of St. Mary Mercy’s nurses attended PFAC meetings to talk about how the education had changed their perspectives. “When these nurses meet with the council, the feedback they receive makes them feel that they’re doing worthwhile work,” another benefit that McElroy emphasizes.

Hospital administrators have found that NICHE principles help clinicians deliver patient-centered and evidence-based, high-quality care to its fast-growing older patient population. They also credit NICHE for its part in helping to improve care to meet Medicare reimbursement requirements.


Preparing Nurses to Care for Older Adults

Nurses turn to NICHE for help ensuring exceptional care for older patients was being provide system wide.

Christ Hospital: From Gap Analysis to Patient-Centered Care

At Christ Hospital in Cincinnati, the journey toward more patient-centered care began in 2005-first by performing a gap analysis followed by forming a steering committee to help guide the organization toward achieving its goals. Committee members looked at a range of options, including a PFAC. Stephanie Meade, MSN, RN, NEA-BC, executive director, patient care services, was a member of the steering committee.

“We examined the actions we needed to take and the culture changes that would be necessary,” she says. One vital component was incorporating patients and family members into decision making. The patient and family advisory council definitely fit in this category. They modeled the council on one that was already operating at Cincinnati Children’s Hospital Medical Center nearby.

Sandi Wright, MS, BSN, RN, clinical nurse manager on the geriatric medical-surgical unit and the hospital’s NICHE coordinator, joined Meade to become the founding members of the hospital’s PFAC. Sandi believes that patient and family advisory councils are a strength that is needed for health care syste “Much of the literature supported this type of change,” she says. Their literature search pointed to evidence of enhanced coordination of care and improved patient satisfaction scores resulting from PFACs. PFACs can also help improve clinical outcomes and patient safety.

Christ Hospital’s PFAC has been up and running since 2007. Half of the council is made up of family members of former patients; the other half is hospital staff drawn from nursing and various other hospital departments. The council holds monthly meetings.


At least one new idea is presented each month to the council. Past council projects include feedback on angel carts for end-of-life care, the new fall prevention program signage, use of white boards in patient rooms, and a caregiver notebook along with input during the development of the hospital’s electronic “My Chart” that allows patients to see lab results and medication instructions after discharge.

In 2008, Christ Hospital separated from its parent health system and became an independent hospital, acquiring a number of physician practices in the process. The council is now looking at how attention can be focused on patient-centered care outside the hospital setting as well.

In transitioning to patient-centered care, Christ Hospital also turned to NICHE for support, earning NICHE designation in 2008. In performing an initial Geriatric Institutional Assessment Profile (GIAP), nurse administrators saw that they needed education in geriatric nursing care. NICHE resources helped fill the gap by providing evidence-based practice education and raising awareness of the specific needs of the geriatric population.

Nurses were educated on dementia, medication administration for older patients, and fall prevention initiatives among other topics. Within six months, the hospital’s geriatric unit saw the patient fall rate drop by 82%. All of the hospital’s patient care assistants who worked on this unit were also educated on the specific care needs of older adults.

Echoing what other hospitals have found, Christ Hospital has seen its patient-centered care initiatives result in a significant improvement in patient satisfaction with scores in the 90th percentile. As Meade explains, “We can’t say specifically that this improvement is because of the work of the PFAC, but patient satisfaction scores have increased each year. We believe that getting input from the PFAC has helped us make a difference.”

Scott Bugg is affiliated with the NICHE program.

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