Delivering Great Care: Engaging Patients and Families as Partners

From a distance, it looks like health care has always been patient-centered. After all, the focus is on healing the patient. But up close, the view is very different, as anyone who has ever received or delivered care knows. “When you have 9,000 things going on, you don’t want to sit down and figure out how to partner with your patients,” says Jim Conway, an IHI Senior Fellow with a long career in hospital administration. “The paternalistic model of care is the way we’ve organized ourselves, simply to get the work done.”
But it’s a model that’s increasingly being rejected in every corner of health care. Patients and family members feel that their questions, concerns or preferences are ignored or never sought, and committed caregivers feel overworked and under-appreciated. Worse, a growing body of research suggests that the lack of productive communication between patients and caregivers contributes to ineffective or inappropriate care, or even fatal errors.
To address these issues, in 2001 the Institute of Medicine (IOM) established patient-centered care as one of its six aims for the health care system. In Crossing the Quality Chasm: A New Health System for the 21st Century, the IOM defined patient-centered care this way: “Providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.”
A growing number of hospitals and health systems in the US and elsewhere believe that creating processes that reflect the IOM’s vision improves care and outcomes, and paves the way for greater success with important safety and clinical initiatives such as the six interventions in IHI’s 100,000 Lives Campaign.
“We include parents in clinical rounds not because we believe in patient-centered care, but because we believe in great care, and we can’t deliver great care if the person who knows the patient best isn’t in the room,” says Mark Helfaer, MD, Chief of Critical Care at Children’s Hospital of Philadelphia. Pediatric hospitals have been ahead of the curve on some aspects of family-centered care, for instance, having long ago provided accommodations for parents to sleep next to their children.
But there is a difference between giving parents 24-hour access to their hospitalized children, and truly embracing them as valuable and contributing partners in their child’s care. Sorrel King knows this too well. Her 18-month-old daughter Josie died at Johns Hopkins Children’s Center in March 2001 from a combination of medical errors, all of which would most certainly have been avoided with better communication. “When I talk with other families who’ve been through this, they all say the same thing: ‘They didn’t listen to me,’” says Sorrel King, who, along with her husband and other family members, has turned her grief into action by establishing the Josie King Foundation for improved patient safety through better communications.

Patients and Families Are Leading the Way

Learning to work with patients and families as true partners in their own care is neither easy nor intuitive. It involves significant changes, both cultural and logistical. But pressure to do so is increasing. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has joined the IOM in setting goals concerning patient involvement, and the Centers for Medicare & Medicaid Services (CMS) is looking at doing so. But pressure from patients and family members such as Sorrel King makes this change inevitable, says Jim Conway. “It is not ours to decide. Our patients and families are taking us there.”

Conway has his own painful memories of how a medical error can shatter trust at the institutional level. He served as the Chief Operating Officer at Dana-Farber Cancer Institute in Boston in 1995 after Boston Globe health columnist Betsy Lehman was given an accidental overdose of chemotherapy drugs and died. The incident received widespread media coverage, and focused the Dana-Farber as never before on finding and fixing communication gaps, and on re-establishing trust and respect among patients, families, and caregivers. Conway underscores this notion: “Patient-centered care is grounded in respect.”
So how does that respect get put into action? Hospitals working with IHI are finding many and varied ways, including placing patients or family members on key committees beyond the traditional grievance committee; teaching caregivers how to listen and communicate more effectively, especially in difficult clinical situations; permitting family members to call the hospital’s Rapid Response Team if they feel a loved one is in danger; opening ICUs for 24-hour visitation and including family members in daily rounds; offering family members opportunities to provide some direct care when appropriate; enlisting the help of family members and patients themselves in reviewing daily medication lists; and even allowing family members to remain in the room during resuscitations. 

Moving Beyond Good Intentions

Changes such as these require a new way of thinking. “Most people truly believe they are thinking about and for the patient,” says Susan Grant, MS, RN, CNAA, Chief Nursing Officer at Emory Healthcare. “But there is a difference between assuming you know what’s right for the patient and engaging in discussions where you have the patient define that.” Patient-centered care, says Grant, moves beyond good intentions to include the patient’s and the family’s preferences. 

The best way to know what those preferences are, says Audrey Fisk, RN, MBA, CPHQ, is to ask. Fisk is the Administrative Director of Neurological Sciences at Memorial Hermann Hospital in Houston, Texas, with responsibility for the neuro-trauma unit. With patients who are either unconscious for much of their stay or otherwise unable to communicate well, Fisk says, “It’s difficult to get our patients’ perspectives, but we wanted to know how their families were feeling about our services.” So the hospital invited an advisory group of family members to dinner and asked lots of questions. They got lots of answers, particularly about the way physicians provide information to families.
“They want the physician to ask them what their concerns are first, before launching into a speech about the patient’s status,” says Fisk. This is not just good manners. “If there is a specific concern on their minds, they don’t hear anything the doctor says until he gets to that particular issue.” Misunderstandings are also more likely under stressful conditions. One family member recalled the surgeon telling her the percentage of patients that survive with injuries similar to her husband’s, and the percentages who are paralyzed, who walk again, and who function at different levels. “She was doing the math in her head,” says Fisk, “and when the numbers passed 100 percent, she assumed her husband had died.” Fisk reports that when the surgeon eventually received this feedback, he appeared in her office with tears in his eyes. “He said, ‘You have to teach me how to talk to these people.’”
Now Audrey Fisk meets monthly with the trauma surgeons to talk about patient and family issues and discuss feedback gathered from surveys and group discussions. “We have learned a lot about how to communicate more effectively,” says Fisk, “how to take cues from families about when to repeat things, or when to back off and give them a break from all the information they‘re asked to absorb.”
At the University of Washington Medical Center more than 100 patient and family advisors — patients and/or family members who can share the lessons from their experiences — sit on committees and specialty-specific advisory councils. Among other tasks, these councils work with faculty members to create training programs for residents on how to talk with patients. “Some of it is basic, like remembering to introduce yourself to patients,” says Chief Nursing Officer Susan Grant. “Some of it is more complicated, like when and how to break bad news.”
At Allen Health System in Waterloo, Iowa, part of the Iowa Health System (IHS), the focus is on providing patient-friendly written information, and on coaching physicians to talk to patients in lay terms and gauge their understanding in a way that doesn’t embarrass them. Jeffrey Crandall, MD, FACP, Allen’s Chief Medical Officer and interim Chief Medical Officer for IHS, says physicians shouldn’t talk with patients as they would talk to other physicians, using arcane terms and medical jargon.
“People think they’re supposed to understand, so they don’t ask questions. Something like 35 to 40 percent of patients in most areas of the country do not have what we call health literacy,” he says. “They either don’t understand or don’t follow with accuracy information and instructions about their health, and then they get labeled ‘non-compliant.’” Allen Health System, which recently received an American Medical Association award recognizing its leadership in improving patient-centered communications, relies heavily on its patient advisory group for feedback about how patients best receive information. 

Learning To Listen

But a true partnership involves more than just giving information. Caregivers must also be willing to seek and respect input from patients and family members on issues both broad and specific. This, says IHI’s Jim Conway, is where the greatest challenges often lie, and where strong leadership is essential. “We haven’t been trained to share responsibility or to trust in the perspectives of other partners,” he says.

In the aftermath of Betsy Lehman’s death at Dana-Farber, Conway says the organization embarked on an ambitious and sometimes humbling effort to formally seek and learn from patients’ and family members’ feedback about their care experiences. “The first year is unbelievably hard because there is so much anger and finally an opportunity to vent,” he says. But, he says, the effort is worth it. “When we invited patients to sit on our planning committees, our physicians thought we had lost it. Within two weeks one physician said, ‘They are teaching us things we didn’t know.’”
Learning to listen to and trust patients and family members at the individual patient-care level can also require a significant adjustment, says Susan Fuchs, RN, BSN, Nursing Director at Our Lady of Lourdes Hospital, an Ascension Health hospital in Binghamton, New York. But it is important and necessary. “Patients and families are much more aware of health issues now,” she says. “They are reviewing medications, they know the core measures for heart failure, they are looking things up on the Internet, asking good questions. If you can’t accept that, if you take it as a sign of mistrust, then you just set up an adversarial relationship.”
Sorrel King and The Josie King Foundation established the Josie King Pediatric Patient Safety Program at the Johns Hopkins Children's Center to improve the quality of communication between families and caregivers and provide safeguards for families if and when that communication breaks down. Working with the University of Pittsburgh Medical Center (UPMC) Shadyside, a 486-bed tertiary care hospital, King has helped to implement The Josie King Call Line – Condition Help (H), a program that enables patients and family members to call for immediate help if they feel the patient is not receiving adequate medical attention.
Modeled on the Rapid Response Team, a group of clinicians available to rush to a patient’s bedside whenever a nurse or other caregiver feels a patient’s condition is deteriorating, UPMC’s Condition H gives patients and families a way to alert a similar team who will come and assess the situation. “When families are unsure of how care is being given, managed or planned, or if something just doesn’t seem right and they feel they aren’t getting anyone’s attention, they can call a Condition H,” says Beth Kuzminsky, RN, MSN, Improvement Specialist in the hospital’s Clinical Design Initiative. All inpatients are given a brochure that describes the service, and a video is in the works for patients that tells the Josie King story and why UPMC Shadyside is committed to encouraging the use of Condition H.
Since July 2005, when Condition H was implemented, UPMC Shadyside has received 16 Condition H calls. “Usually the root cause is confusion about the care plan or breaks in communication,” says Kuzminsky. Although there is not enough data yet to detect strong patterns or trends, Kuzminsky says that all of the calls have been carefully reviewed and found to have been appropriate. Sorrel King says the mere existence of Condition H helps to change the culture. “Now when a parent asks a question, the nurses and doctors will listen more carefully,” she says. And the benefits could be profound. “Josie would be alive today if Hopkins had had Condition H,” says Sorrel King. 

Everybody Benefits

Communicating effectively with patients and families means giving them easy access to relevant information. Typically, the best and most complete information about a patient’s condition and care plan is exchanged during daily rounds, from which family members have traditionally been excluded. Lynn Maguire, RN, MSN, CNA, Administrative Director of the Trauma, Transplant and General Surgery Services at Memorial Hermann Hospital in Houston, Texas, says her organization realized that this practice was not patient-centered. “We thought we had open visiting in the ICU, but when we really looked at it, we didn’t,” she says. “Families were asked to leave during rounds, and that amounted to about four hours a day.”

Allowing families to remain in the room during rounds was not an easy sell among some clinical staff, says Maguire, especially in a teaching hospital such as Memorial Hermann. She recalls one Fellow asking, “How can I yell at a resident during rounds if there are family members there?” Others felt that family members wouldn’t understand the discussion or worried that the value of rounds would be diminished for staff by family members’ questions and interruptions. Some also worried about HIPAA privacy violations. 
“There was a lot of concern,” Maguire recalls. But when a pilot test went well, attitudes softened, and eventually the practice spread to all ICUs. Now, three years later, Maguire says the effort has been “tremendously successful,” because the benefits are clear.
“Family members get the information they want, and they don’t have to sit in the waiting room for hours hoping the doctor will come by so they can ask questions,” she says. “The attending physicians like it because when they are finished with rounds, they are truly finished. They don’t have to spend another hour or more talking with families. And there is no more dressing down of residents, which was inappropriate anyway.”
Maguire says that participation in daily rounds is particularly beneficial for family members of trauma patients, who may themselves be in a state of emotional overload because of the sudden and sometimes severe nature of most traumas. “Trauma patients’ families often don’t hear things the first time,” she says. “At rounds they hear the same thing every day, so if things aren’t going well, if recovery will be long, if there are barriers to discharge, they start to get that message. There are fewer surprises for them.”
This is far different from what families used to experience, says Maguire. “In the old days, when family members were allowed in for 15 minutes every few hours, we made sure the patients in the unit were pristine and well-sedated. It was sometimes a shock when the patient was moved out of the ICU and the family gained more access, and realized for the first time how much care the patient required,” recalls Maguire. 
Not only do family members have a more realistic understanding of the patients’ needs, they learn to meet some of them in the ICU setting. “You feel pretty helpless standing by the bedside,” says Maguire, “so there are small things we teach family members to do, especially for our ventilator patients.” To prevent ventilator-associated pneumonia (VAP), ICU staff at Memorial Hermann use the steps in the Ventilator Bundle, one of the six interventions in the 100,000 Lives Campaign.
“We are pretty aggressive with the VAP bundle, and we include family members in the process when they are willing, especially with oral care and suctioning oral secretions,” says Maguire. “It helps orient everyone to the patient’s condition, and prepare for the eventual transition out of the hospital when families will be more responsible for daily care.”
At Allen Hospital in Iowa and Our Lady of Lourdes Hospital in Binghamton, New York, family members are also enlisted to help ensure that the elements of the Ventilator Bundle are carried out. “We post the bundle steps right in the room, and we ask family members to remind us if the head of the bed isn’t elevated,” says Lourdes Nursing Director Susan Fuchs, referring to the optimal 30 to 45 degrees that’s crucial to preventing ventilator-associated pneumonia.
Families have been included in rounds in the ICU at Lourdes since early 2004, and Fuchs says it has worked well, saving nurses time and making patients and families happier. “The more they know, the better,” she says. For especially complex patients or situations in which daily rounds are not sufficient to cover the patient’s and family’s needs, separate patient care conferences are scheduled for families with all the relevant specialists.
All this work to improve patient-centeredness has a common foundation, says Susan Grant. “It requires organizational courage. It takes a belief in transparency, an ability to let go of fears of litigation, a willingness to walk the talk and be a true learning organization.”
Paula Agosto, RN, MHA, Director of Nursing, Critical Care, and Emergency Transport Team at Children’s Hospital of Philadelphia, says most clinicians’ fears about opening the gates to patients and their families disappear if there is respectful give and take. “It’s not that the customer is always right. It has to be a true partnership, where everyone respects each other’s rights and responsibilities. As you get better at it, you experience fewer and fewer problems.”
The culture of partnership and trust between caregivers and families at Children’s in Philadelphia has grown strong enough that physicians are increasingly allowing parents to stay in the room if their child needs to be resuscitated. “We encourage it,” say Critical Care Chief Mark Helfaer. Physicians who are uncomfortable with this scenario are coached on appropriate ways to ask parents to step out of the room.
IHI Senior Fellow Jim Conway says steps such as these are scary at first, but pay off hugely in the end. “Every hospital that moves toward patient-centeredness says the same thing at first: ‘This is crazy.’ But soon they all say, ‘This is the best thing we ever did.’”
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