CNO Conference
27 November 2013
Dignified Person Centred
Care - Learning from the USA
Alan Corry Finn, Executive Director of Nursing
Anne Witherow, Assistant Director of Nursing
Visit to Dana-Farber Boston
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Sponsored by a Florence Nightingale Travel
Scholarship
Compare the culture of care in an insurance
based health care economy versus direct
taxation system
Experience and understand Dana-Farber
focus on patient involvement, respect &
dignity.
Dana-Farber Cancer Institute
Dana-Farber Cancer Institute Values
Beliefs & Mission Statement
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The delivery of safe, effective, dignified &
compassionate patient centred care.
Patients and families have: experience;
expertise; insights; and perspectives that
can be invaluable to bringing about
transformational change in health care and
enhancing quality and safety.
Dana-Farber Cancer Institute
Dana-Farber is the largest Cancer Institute
funded by the National Cancer Institute,
USA.
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Located downtown Boston.
Adult and Paediatric Outpatient Clinic Visits
and Infusions – 353,641
Adult Inpatient Discharges – 1,060
Shared In-patient Facilities with Brigham
Woman and Children's Hospital
2011 Fiscal Year Statistics
Registered Nurses
 Outpatient Departments – 248
 In-patient Units (BWH) – 229
Overall Number of Employees
 3,325 WTE & 438 PTE
 Satellite Centres – 49 Employees
694 Research Projects
Dignified Care
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Dignity is a complex subject but it is at the
heart and value of caring.
People will always know when they have
NOT been treated with dignity and respect.
Dignified care allows people to feel in
control, informed, valued & confident to
make decisions for themselves.
Dana-Farber’s Dignified Safe Patient
Care Journey
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News & World Report’s Best Hospitals 2010
Guide ranked Dana-Farber Cancer Institute
number 1 top Cancer Centre in New England
and 5th overall in the USA.
The overall score is based on professional
reputation, mortality rates, patient safety, and a
grouping of care-related factors such as
nursing and patient services.
However, this was not always the case in 1995
1994 - Betsy Lehman
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39 year old mother of two young children
Wife of a cancer researcher at Dana-Farber
Boston Globe Health Reporter
Had advanced breast cancer experimental bone marrow
transplant
Opted to be treated at Dana-Farber after her own research
into cancer care
Suddenly died the day before discharge
No one had any idea of the cause of death
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Billing clerk discovered the error 2 months
later
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Over 100 people involved
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Betsy Lehman received an overdose of
chemotherapy x 4
Boston Globe Response 1994
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When 39-year-old Betsy A. Lehman died suddenly last
Dec. 3 at Boston's Dana-Farber Cancer Institute, near
the end of a gruelling three-month treatment for breast
cancer, it seemed a tragic reminder of the risks and
limits of high-stakes cancer care. In fact, it was
something very different. The death of Lehman, a
Boston Globe health columnist, was due to a
horrendous mistake: a massive overdose of a powerful
anticancer drug that ravaged her heart, causing it to
fail suddenly….
External Findings
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Failure of Governance and leadership
Arrogance of excellence
No focus on Quality, Safety or Risk
Overdependence on - perfect people in broken systems
Punitive culture
Virtuoso performers with neither conductor nor score
Clinical practice - lost in the organization
The voice of the patient wasn’t respected
No systems for error discovery, communication, support, resolution or
learning
Response
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Knowledge of the incident – organisational decision to
disclose
Acknowledgement of their error
Internally damaging and disruptive
Reputation destroyed - public confidence lost
Restructured executive leadership
Systems review
Engagement with the patients and public
Rebuild trust, confidence and reputation.
Patient and Family Voices
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Established Patient and Family Council
Promote communication and collaboration among
patients, families, care givers, and staff
Participate in oncology programmes, services, and
policies.
Central place for the voice of patients and families,
the Council is fully recognized by the clinical and
administrative staff, and there is an PFC member
all major hospital committees.
Patient and Family Council (PFC)
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The PFC membership has approx. 15-17 patients and/or
family members & 4 staff members
Membership is by application and interview
Patients or family members must be 2 years post treatment
or loss
PFC members must be committed to building a partnership
of advisors and advocates representing patients and their
families
Voting patient and family members serve up to three oneyear terms. After three years, patient and family members
are welcome to continue their involvement; however, they
are no longer voting members.
Patient and Family Council
Examples include:
 Art and Environment
 Recruitment and Retention Committee
 Care Improvement Committee
 Committee for Minority Recruitment
 Facilities
 Outpatient Care Improvement
 Patient/Family Education Council
 Involved in ‘Rounding’ – the experience element
of care
Patient and Family Council
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Central in the redesign and rebuild of the Dana-Farber
appointed the architect
Developed and launched the “Patients as Educators”
programme to share experiences and feelings about
oncology patient / provider relationships with small groups of
nurses and doctors
Advocated for increased psychosocial support services
Worked with the Patient Accounting to create more patientfriendly billing letters
Launched Side by Side, a quarterly newsletter for patients
Served as a national model for patient family participation in
clinical care services
Patient and Family Council Work
Preparing for your first appointment
booklet
- How to prepare
- How to talk to your doctor
Financial and Legal Matters
- Developed guidance on issues of insurance and legal
aspects of care.
Etched glass railings in the lobby of the Centre for Cancer
Care depict nature and science mingled with words of hope
and encouragement
Patient and Family Council
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Developed Booklets for New Patients
– Directions to Dana-Farber
– Public Transportation Advice
– Where to Park
– Places to Eat and Stay
– Guidelines for Visitors
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Specialist Assistance
– Interpreters
– Patient Navigators
– Disability Services.
Volunteering
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284 volunteers
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Combined hours of service in 2011 = 22,452
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Volunteers are required to complete ‘time sheet’
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Commit to at least one four-hour shift each week for
six months
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Strong ethos of involvement and ‘giving back’
Western HSC Trust Response
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Develop Trust’s Vision for Patient and Family
involvement (opportunity with new Radiotherapy
Centre to test model).
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Assess the values and beliefs of staff to person
centred care.
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Review of PPI and Patient Experience Volunteers
& work of Chaplains.
Western HSC Trust
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Establish systems for senior leaders to engage
with patients and their families in defining
quality and determining quality goals.
Development of systems for patients and
families to easily report safety and risk
concerns.
Training for patient and family centred care,
and for creating partnerships with patients and
families
Western HSC Trust
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Job descriptions reflect the values of patient and
family partnership
Integration into appraisal
Develop systems for on-going performance monitoring
regarding communication; shared decision-making
and continuity of care.
Physical environment designed to create welcoming
first impressions, enhance access to information, and
support family presence and participation
RESOURCES, SKILLS & WILL
Report in the Boston Globe 2004
A decade after Lehman's death, on Dec. 3, 1994, DanaFarber has emerged as one of the most safety-conscious &
person focused hospital in America, with computers that
trigger alarms at potential overdoses, a hyper-vigilant errorreporting system, and a top executive who pushes measures
in pursuit of the old physician's promise to "first do no harm."
Once a symbol of medicine's dark side, Dana-Farber's
experience is now used in instructional brochures and videos.
2001: Enactment of the Betsy Lehman statute
2004: Launch of the Lehman Patient Safety Cancer
Center
It is all too easy to welcome patient or family participation
onto a committee or two and then call a hospital “patient
and family centred.”
As seen at Dana-Farber - true change occurs only when
patients and families are equal collaborators in the wide
range of decisions that are made in health care settings,
from establishing vision for the organization and design
of the facilities to hiring, policy development, quality
improvement effort and beside care.
In the Words of Florence
Nightingale …
It may seem a strange principle to enunciate as the
very first requirement in a Hospital that it should do
the sick no harm. I think one's feelings waste
themselves in words, they ought all to be distilled
into actions and into actions which bring results.
(Florence Nightingale, 1859)
(With thanks to the Florence Nightingale Foundation for their support and Travel Scholarship
Alan Corry Finn & Anne Witherow)
Thank you for listening