Tip Sheet
Patient and Family Centered Care
Emancipation Proclamation: How patients and families can take leadership for
their care.
Victoria L. Rich PhD, RN FAAN and Mary K. Walton MSN, MBE, RN
Cultural transformation from provider centric to one that is patient and family centered
(PFCC) is underway in many acute care settings. Dr V Rich launched such an initiative at
Hospital of University of Pennsylvania (HUP) in 2008.
Just as President Lincoln’s Emancipation Proclamation lent new moral force to the Civil War
by making it a fight not to just preserve the Union but also to empower “all persons held as
slaves” "shall be then, thenceforward, and forever free " so too does the movement for
patient and family centered care seek to empower patients and their loved ones.
Did you know that President Obama issued a memorandum – in April 2010 - focused on the
rights of patients to receive “compassionate care and equal treatment during their hospital
stays?” Patients have the right to identify a friend or family member to be with them in the
inpatient setting – even in critical care setting.
This transformation of hospital/organizational culture is well underway at HUP - promoting
both family presence and participation at the level the patient. Not a nursing initiative per
se – PFCC requires every hospital employee to recognize and respond as possible to the
values, preferences and expressed needs of patients and their family members. Nursing
has led the way given their holistic view of individuals within the context of the family –
“family” as the patient defines it. Nurses are central to the quality and safety of the patient
experience in the inpatient setting.
Why PFCC?

Consumer demand

Quality and safety movement

Regulatory and accrediting bodies
What is Patient Centered Care?
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Tip Sheet
Patient and Family Centered Care
Emancipation Proclamation: How patients and families can take leadership for
their care.

IOM: providing care that is respectful of and responsive to individual patient
preferences, needs and values and ensuring that patient values guide all clinical
decisions.

Clinical staff recognize the important role of a patient’s loved ones - they are allies
for patient safety and quality care – as well as help to meet the emotional needs of
the patient.
What did we do at HUP to launch this initiative?

Remove restrictions to family presence.

Working to help staff understand the value in engaging the patient actively in their
inpatient experience and how to do it (history, speaking up, rounds, patient
education).

Establishing a new volunteer role – Patient and Family Advisor and integrating them
into the work of the organization – bring the perspective of the patient to the clinical
and administrative work efforts.
What does PCC look like in the acute care setting/Hallmarks of PFCC?

Patients and their support person are active members of the care team.

Patients know their team members and understand their roles: attending physician,
nurse responsible for care, therapists, social workers etc.

Hospital staff consistently seeks the patient/support person input into goals of care,
evaluation of treatment options and care plans.

Patients feel there are treated with respect and dignity (examples –introductions,
active listening to patient questions and concerns etc).

Routine systems and structures include the patient at the level the patient wants and
needs: examples: participation in interdisciplinary rounds and nursing transitions and
discharge planning meetings etc.
How can a patient take leadership for their care?
1) Prepare for the hospital stay if possible/elective admission.
a. Why do you need to be admitted? What are the goals? How am I expected
to be at discharge? Am I expected to need rehab or other assistance when I
am discharged?
b. Who will be supervising my medical plan of care? Does my physician expect
other specialists to be involved in my care? If so who/why?
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Tip Sheet
Patient and Family Centered Care
Emancipation Proclamation: How patients and families can take leadership for
their care.
c. Identify a key support person who can be with you as you need while an
inpatient.
d. Take a list of your home medications. Know/have a summary of your medical
history.
e. Take a notebook with you to record important events, names, information –
for future reference.
f.
Tell your physician and/or hospital admission staff if you have identified a
support person for your inpatient staff. Ask what provisions are available –
sleep chairs, education sessions, etc.
2) Seek to recognize and understand the important work role of the nurses:
a. Ongoing surveillance: assessment, evaluations, monitoring. Nurses help keep
you safe. Ask why they are doing some of the visible tasks: vital signs. Know
that some of their work might be invisible to you. Ask if they are concerned
about anything that you or your support person should know. Are there any
particular changes or symptoms you/support person should be on the alert for
– can watch for and let them know?
b. Recognize the coordination role of the nurse. Talk about the goals for the shift
or day. Ask about schedules for testing or procedures. Let your nurse know if
you want someone to be with you when you go for a test/procedure or hear
about results that are important to you.
c. Ask for list of your medications in the hospital and their purpose. Know this
may change frequently. Help prevent medication mix ups or errors.
i. Check that any allergies are known
ii. Don’t talk or distract the nurse when your medications are being
prepared. You want your nurse to be completely focused on
calculating/checking your medications.
iii. Do ask questions before taking any medication that seems unfamiliar.
iv. Learn about your medications: purpose, dose, side effects, and
interactions with food or other medications, contraindications. Ask
your nurse or hospital pharmacist questions about any new
medications.
d. Helping manage pain: with medication and other interventions.
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Tip Sheet
Patient and Family Centered Care
Emancipation Proclamation: How patients and families can take leadership for
their care.
i. Let your nurse know if you are having pain. Talk with your doctor and
nurse about plans for managing your pain with medications. Ask if
there are other things that they know can help ease your pain.
ii. If there are any interventions that you know help you – ask your nurse
– repositioning, heat, diversion such as music.
iii. Keep your doctor and nurse apprised of how your pain is being
managed.
e. Help prevent falling while in the hospital.
i. Ask your nurse about preventing falls. Are you at an increased risk for
falling because of your hospital treatment/medications/room
environment etc.? What does your nurse recommend? How can your
support person help prevent your falling?
f.
Help prevent infection.
i. Ask staff to wash their hands!
ii. Do not let sick friends and families visit.
iii. Ask your nurse and doctor what you can do to prevent infection.
g. Ask where your support person can sit/sleep so as not to impede nurses
coming and going to check as they check on you throughout the 24 hour day.
h. Take notes – and/or ask your support person take notes. Ask your nurse or
physician to write things down when they are explaining things that you want
to remember. Details can be important later. Show your notes to your nurses
and physicians and ask if you have the correct information. Invite them to
make notes for you – or draw illustrations etc

Nurses are responsible for surveillance and vigilance to detect any downturn in a
patient’s health status or the advent of an adverse event, and to initiation activities
to “rescue” the patient and restore health. When this does not happen, known as
“failure to rescue”, it is an indicator of the quality of acute hospital care. (IOM, 2004
p35)
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Tip Sheet
Patient and Family Centered Care
Emancipation Proclamation: How patients and families can take leadership for
their care.
What is the role of your support person?

Person who cares about you and you trust to help you with your health care. Let
your doctors and nurses know to what extent you want them involved in your care
and decisions. Think of them as your care partner. Are they present for emotional
support? Do you want them to know about your medical condition and to be involved
in any education that happens in the hospital? If so let your nurse know. If they will
be helping you after discharge – ask that they be included in planning for your care
at home.

They can be extra pair of eyes and ears and hands to help prevent the most potential
problems that nurses watch for:
o
Hand washing
o
Help you keep track of who’s who – names and roles.
o
Early recognition of subtle changes from your baseline – can alert the nurse.
o
Help you think about your condition and what you want to know. They can
write your questions down and help remind you to ask etc.
o
Help prevent falls.
o
Help with your pain management
o
Help communicate with other friends and family members about how you are
doing.
o
Help keep a record of what happens in the hospital – keeping your notebook
up to date.
o
Help you plan for your care after you leave the hospital.
Resources:
The Joint Commission – www.thejointcommission.org


Speak up Series for example: Speak Up: Know Your Rights:
http://www.jointcommission.org/multimedia/speak-up-know-your-rights/
Safer Patient Newsletter – sign up (free)
Planetree – www.planetree.org
Patient Notebook: http://planetree.org/wp-content/uploads/2012/06/Planetree-SamePage-Patient-Notebook.pdf
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Tip Sheet
Patient and Family Centered Care
Emancipation Proclamation: How patients and families can take leadership for
their care.
Institute for Patient and Family Centered Care www.ipfcc.org
Picker www.nrcpicker.com
Overview of Patient-Centered Dimensions: http://www.nrcpicker.com/memberservices/eight-dimensions-of-pcc/
The Eight Dimensions of Patient-Centered Care grew out of years of research by the Picker Institute and
Harvard Medical School, thousands of interviews, and the experiences of caregivers and patients.
Analysis of this industry-changing research showed that there are certain things, certain behaviors no
less, that are instrumental to patients’ healing, feeling cared for, and having a positive patient experience.
From that research, we now understand what matters most to patients.
Authors:


Victoria L. Rich PhD, RN, FAAN
Chief Nurse Executive, University of Pennsylvania Medical Center. Associate Executive
Director, Hospital of the University of Pennsylvania
Associate Professor, Nursing Administration, University of Pennsylvania School of Nursing .
Philadelphia, PA
Mary K. Walton, MSN, MBE, RN
Nurse Ethicist and Director, Patient and Family Centered Care at the Hospital of the
University of Pennsylvania. Hospital of the University of Pennsylvania. Philadelphia, PA
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