Patient advocacy was new to me when I joined Patients for Patient Safety Ireland (PFPSI) in 2015. It was established in 2013 by Margaret Murphy, External Lead Advisor WHO Patients For Patient Safety and facilitated by the Health Services Executive (HSE) Advocacy Unit with the support of Dr. Philip Crowley, National Director of Quality and Patient Safety.
My introduction to the group followed an external HSE review, in 2013, of the circumstances of my late husband’s death following a medical misadventure in 2006. My journey trying to understand aspects of his care had been a lonely road. I was disappointed by the lack of transparent engagement and sensed that barriers had been erected to deny me access to answers. I lost my trust in medical professionals, and the words “health” and care” became estranged. Meeting Margaret Murphy I knew she had experienced something similar.
Open Disclosure was discussed at the first PFPSI meeting I attended. In 2013 the HSE and its indemnifiers, the State Claims Agency, launched national policy and guidelines on Open Disclosure. The documents were developed following a two year pilot programme in two acute hospitals, the Mater Hospital Dublin and Cork University Hospital. The Health Information and Quality Authority (HIQA) made Open Disclosure a requirement in the “National Standards for Safer Better Healthcare 2012”. It is also a professional and ethical requirement for nurses, midwives and doctors in their professional codes of conduct and ethics. The failure to disclose following adverse events and the impact on patients and their families had been highlighted in many high profile adverse event cases, such as the infant deaths in the Midland Regional Hospital, Portlaoise and Portiuncula hospital. Learning from errors begins with acknowledgement.
In April 2015, Dr. Jane Pillinger presented her evaluation of the National Open Disclosure Pilot Programme. She highlighted the impact of the pilot for patients. Openness and transparency increases trust and confidence and enhances the patient-clinician relationship. It can help recovery and closure following an adverse event; improve understanding of patient perspectives and needs, including how incidents are viewed from the perspective of the patient and their families.
For healthcare staff she saw significant learning in managing Open Disclosure. It encouraged a culture of honesty and openness, confidence, a framework and organisational endorsement for open disclosure. It improved clinician-patient trust, professional responsibility, integrity and respect for patients. Staff were more able to deal with the personal impact of an adverse event if open disclosure was carried out in a timely way. Appropriate care and plans for resolving and preventing future errors were identified at an early stage.
Dr. Pillinger also saw challenges: medical-legal issues; fear of loss of reputation, of being reported to fitness to practice; a hostile environment resulting from media reporting; differences in expectations between staff and patients/families.
Finally, she made recommendations for the roll out and embedding of Open Disclosure in Irish healthcare. The cultural change, to be achieved by leadership, training, staff support, organisation and peer learning, creates a supportive culture.
The work of briefing staff on the delivery of Open Disclosure across the acute hospitals and community services is ongoing. Numerous resources to assist training and implementation have been established. “Train the trainer” courses were set up and patient advocates where invited to take part. PFPSI members delivered the patient story at a number of venues to share their experiences and the importance of transparency and unencumbered honesty. When harm is done our questions should be answered with candour. In the past honesty was suppressed, I believe patients and families got an edited version which cast doubt on the veracity of the information given to them. Outside influences managed honesty and fear of the repercussions of telling the truth, silenced it.
Protective legislation for medical professionals has been included in the Civil Liabilities Amendments Bill 2017. It protects medical staff in the Open Disclosure process, disclosure and an apology are not an admission of liability, which is a separate legal process. From the patient’s point of view should there be a statutory obligation to tell patients the truth with penal sanctions for breach of duty? Many would say yes. I feel that we should first engage with what we have and give it a chance. Give the truth a clear passage and avoid more reasons for defensiveness.
Honesty is the basis for trust and patients need to know that when they place their care in the hands of a medical professional, honesty is assured.