++
The philosophy of patient and family-centered care is founded
on the belief that health outcomes are improved by partnering among
health care providers, patients, and their families. This belief
permeates the health care system and does not represent a specific
therapy that is applied as part of a treatment plan. The
patient/family-centered care (P/FCC) approach
affects nearly every interaction and decision in our health care
system. In the literature, there is no uniform definition
of patient and family-centered care. Therefore, it is best described
by its fundamental principles: respect and dignity, information,
participation, collaboration, and flexibility.
++
Treat each family with respect. Although individual physicians
and nurses typically are respectful in their interaction with patients,
the health care system was not designed to afford dignity and respect
to patients. The system often values providers’ needs and
time over that of patients (waiting rooms, double-booked schedules,
etc). Patients are often referred to by numbers or diagnoses. Patients
in a hospital setting are often asked to wear uncomfortable clothing
and are subject to rules beyond their control. Many of the routine
policies and procedures that seemingly disregard patients’ comfort
and dignity are now changing. Treating patients and families with
honor, addressing them as they wish to be addressed, asking permission
to examine, and learning about their strengths and human history
in addition to their medical history exemplifies this core principle
of respect and dignity. Consideration must be given to physical
comfort and modesty of patients and families. Families must be included
in discussions regarding their care and treatment plan. This was
successfully accomplished at one major children's hospital by instituting
a system of “family-centered rounds” that included
the family in all discussions and planning decisions regarding diagnosis
and care. Family and care team satisfaction improved.1
++
Access to health information is a basic right of patients. Implementing
the patient and family-centered care philosophy involves transfer
of control of information from the health care system to the patient
and family. Respecting the absolute confidentiality of information
as it is used by the health care system is imperative.
++
Traditional paper charts kept separately by each provider and
hospital are being replaced by interconnected electronic health
records and databases. As the electronic system is implemented,
designers are faced with the decision of who “owns” the
information. Many hospitals now give patients complete access to their
charts during a hospital stay. Some give the patient control of
all information, and the patient or family grants access to hospitals
or physicians. This is particularly helpful for families of children
with chronic conditions who previously needed to wait for busy professionals
to contact them with test results. They worried about delays in
care and information being overlooked. Access promoted improved
self-management and interaction with providers.2 The
Internet allows patients to have nearly the same access as physicians
to the health literature. Patients and their families are coming
to expect access to all pertinent information. Not all patients
read available literature, but most want the access. Access also
includes information regarding the performance of the health care
system, such as comparative outcome data and patient safety issues. More
expectations are being placed on the health care system to increase
transparency and share outcome results with the public.
++
Perhaps this principle can best be summed up by the phrase “Nothing
about me, without me.” Families and patients have the fundamental
right to make decisions regarding their care. Therefore, families
need to be presented with choices. Shared decision making is gaining
attention as an important aspect of caring for children with chronic
and serious conditions. Increasing emphasis is placed on presenting
information in a clear manner and allowing patients to make choices
when they desire. Involving families actively in making choices
regarding care approaches appears to improve engagement and compliance.3
++
Collaborate with families to improve the health care system.
Many health care organizations have found families are a great resource
of energy and expertise that often goes underutilized. Most pediatric
hospitals have developed family advisory councils; some have patient
advisory councils for teens. Families are more frequently becoming
members of governing boards of hospitals. Several hospitals have
families serving on quality improvement teams and facility design
teams. For individual patients, there is increasing awareness
of the benefits of support by family and friends during acute hospital
stays. In addition, there is support from the literature that parent-to-parent
support may be crucial for families whose child has a chronic or
serious condition. Parents state that fears and anxiety can sometimes
be better allayed by parents who have experienced similar situations.4
++
It is important to recognize that illness places a significant
burden on families. To truly partner with patients and families,
systems must be flexible and address families’ and patients’ unique
circumstances and needs. Offering expanded and flexible hours for
office visits, tests, and even surgery may be necessary. Of course, the
needs of the families of physicians and nurses and staff must also
be considered. Some chronic care clinics are allowing patients to
determine the content and focus of a clinic visit. Most patients
choose the routine aspects of a visit, but some have more individual
needs. Alternative methods of interacting with patients are becoming
common place. Phone visits, e-mail advice, text messaging, and alternative sites
of care (eg, school-based health centers) all allow for flexibility.
More patients want to use alternative medicine. Physicians must
be flexible in accommodating the choices families make. In
hospital settings, flexibility that allows increased control of
daily schedules by the patient can both assure that appropriate
care is provided in a timely manner and can empower patients to
become more engaged in their care. This is of particular value
for care of adolescents with chronic disorders requiring frequent hospitalization
such as cystic fibrosis.5
++
As entire organizations, health care clinics, hospital units
(microsystems), and individual providers work toward the principles
of patient and family-centered care, a paradigm shift takes place
(Table 7-1).
++
+++
Implementation
of Patient and Family-Centered Care
++
Because each practice, clinic, and other health care facility
has its unique norms and culture, the approach to implement the
philosophy of patient and family-centered care must be customized
to the environment: There is no one-size-fits-all approach.
++
To ensure sustainability of your patient and family-centered
care strategies, a 3-pronged approach is recommended. Strategies
must be aimed at the strategic or organizational level, the microsystem
or point-of-care level (eg, on the unit, in the clinic), and the
individual practitioner level. Short-term gains may be achieved
if one of these levels of care is targeted in a specific clinical
setting but families can become frustrated by variances in care
approaches across an organization. Thus, full implementation of
a patient and family-centered care approach requires organizational
change, as discussed in the additional material provided electronically. Ideas
for establishing a culture of patient and family-centered care are
presented in eTable 7.1.
++
+++
Strategic or Organizational Level
++
On an organizational level, support from senior leadership is
a key component of success. Identifying executive champions, including the
chief executive officer, chief nursing officer, and chief of staff,
enables a culture change that is solidly built on the principles
of patient and family–centered care. This group of leaders
sets the tone for the organization by weaving the core concepts
of patient and family–centered care throughout the vision
and mission statements and strategic plans. Families, physicians,
and staff should collaborate in the design of behaviors supporting
the concepts embedded in the strategic plan.
++
Partnering with patients and families at the organization level
can be realized in many ways. Collaboration is recommended for any point
at which families interact with the health care system. Such collaboration
might mean family involvement in areas as diverse as policy and
procedure development, human resources practices, and facilities
renovation and design.
++
At the strategic level, “more is better” in terms
of family involvement. Consider a high-level family and/or
patient advisory council. These groups should play an active role
in designing strategies to support the family role while children
are hospitalized (eg, a monthly “Family Friday at the Movies,” where
hospitalized children and their families meet for popcorn and a
movie in the hospital auditorium), in selection and design of electronic health
records, and in the development of statements of hospitalwide core
values. In addition, standing committees benefit from the perspective
that family members bring: infusing a dose of reality into discussions
about wrong-site surgeries at patient safety meetings or helping
staff design the process of family engagement in child safety. Families
have been an integral part of many quality improvement initiatives:
from discharge planning to improving the care of patients with cystic
fibrosis. When working with patients and families in an advisory
capacity, consider allocating resources for stipends for family
involvement to cover their travel and childcare costs.
+++
Microsystem or Point of Care Level
++
Strategic P/FCC expectations are operationalized at
the microsystem level: whether on a nursing unit or in a clinic.
Leaders of the microsystem must embrace the P/FCC philosophy,
create a culture where patient and family–centered care
can flourish, identify champions on the unit, hold staff accountable to
actualize the P/FCC behaviors, and celebrate successes.
Unit leaders and staff partner with families on microsystem-specific
quality initiatives. Systems must be put in place to support staff
both during the transition to patient and family–centered
care and in coping with challenges as they arise.
++
An implementation plan should be established: Set measures, design
strategies, celebrate successes, and aim for sustainability. The
implementation plan usually begins with education on the core principles.
Educational content shared with all levels of caregivers and utilizing
many approaches has been found to be successful. Consider inviting
family members to staff meetings to tell their stories, highlight
an actual family experience demonstrating exemplary patient and
family–centered care at monthly staff meetings, and conduct
physician and nursing grand rounds. Education must be ongoing because
of staff turnover and the need to reinforce positive behaviors.
Consider reinforcing the concepts of patient and family–centered
care in all staff educational offerings as appropriate.
++
Measurement of progress over time is key from both quantitative
and qualitative perspectives. Consider both overall measures of patient
and family satisfaction with their involvement in care (eg, “Did
the staff listen to your concerns about your child?”) and
specific measures of unit strategies (eg, “Was the adolescent
involved in the daily plan of care discussions at the bedside?”).
Staff satisfaction should also be considered. Having staff define and
interpret their practice within the framework of patient and family–centered
care can be helpful. Informal discussions about challenging situations
help the staff to understand family behaviors and coping mechanisms
during stressful times and to identify family strengths. Repeating
these discussions over time enables staff to take a proactive approach and
equips them to support family choices where appropriate.
++
To maintain enthusiasm for patient and family–centered
care, celebration of both small and large gains is important. When
individual practitioners are “caught” demonstrating
top-notch patient and family–centered care, consider a
written award highlighting their practice. These awards can be displayed for
all to see. Especially meaningful for staff is when family advisors
arrive on the unit and distribute a small token of appreciation
to them, such as a poem or a rose made of chocolate kisses.
++
Sustainability of progress involves incorporating P/FCC
principles into work processes. Patient and family–centered
care is not a separate entity: It is how health care business should
be conducted every minute of every day. Decisions on a personal
level, a unit level, and an organizational level need to be made within
the framework of patient and family–centered care, not
alongside it.
+++
Individual Practitioner Level
++
It is imperative to remember that the health care experience
is chosen by the health care providers and imposed upon families.
The providers, not the family, are the true “visitors” in
the child’s life. To a great extent, the family role is
regulated by the staff. To change the role of the family, individual
practitioners must first change their own approach and role. For
example, all interactions with patients and families must emanate
courtesy and respect: Staff members treat the patient and family
the way they themselves would want to be treated; they maintain
eye contact during conversations and address patients and family
members by their preferred name.
++
Staff must support the family/parental role at the point
of care. Parents bring to the care experience their intimate knowledge
of the child’s responses, cues, and patterns of behavior.
Staff must recognize this strength, capitalize on the family’s
knowledge, and partner with the family in the care of the child.
Parental choices for involvement in the child’s care need
to be explored, supported, and communicated to all caregivers. Parental
involvement might range from administering a medication to being
present during resuscitation in the emergency department or intensive
care unit. On an ongoing basis, families need to have opportunities
to share their insights, observations, and questions. While their
child is hospitalized, this might involve charting in the medical
record or being an active participant in daily rounds.
++
At the individual practitioner level, information that families
need and want must be provided. With a wealth of information at
the public’s fingertips through the Internet, discussions
about value-added information are more important than ever. Individual
practitioners must develop a new appreciation of the effort involved
when a family hands them a stack of computer printouts on the information they
have researched and the plan of care they are proposing. Practitioners
should recognize this as the new way of doing business and view
it as an opportunity to learn and to collaborate on a different
dimension.