Dignified Person Centred Care - Learning from the USA Alan Corry Finn, Executive Director of Nursing Anne Witherow, Assistant Director of Nursing CNO Conference 27 November 2013

Visit to Dana-Farber Boston 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 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. 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 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 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

Betsy Lehman

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

Billing clerk discovered the error 2 months later Over 100 people involved Betsy Lehman received an overdose of chemotherapy x 4

Boston Globe Response 1994 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 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 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 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) Patient and Family Council (PFC) The PFC membership has approx 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 one- year 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 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 patient- friendly 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 Developed Booklets for New Patients – Directions to Dana-Farber – Public Transportation Advice – Where to Park – Places to Eat and Stay – Guidelines for Visitors Specialist Assistance – Interpreters – Patient Navigators – Disability Services.

Volunteering 284 volunteers Combined hours of service in 2011 = 22,452 Volunteers are required to complete ‘time sheet’ Commit to at least one four-hour shift each week for six months Strong ethos of involvement and ‘giving back’

Western HSC Trust Response Develop Trust’s Vision for Patient and Family involvement (opportunity with new Radiotherapy Centre to test model). Assess the values and beliefs of staff to person centred care. Review of PPI and Patient Experience Volunteers & work of Chaplains.

Western HSC Trust 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

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 Western HSC Trust

Report in the Boston Globe 2004 A decade after Lehman's death, on Dec. 3, 1994, Dana- Farber 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 error- reporting 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