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 at WHO for Patients For Patient Safety, and facilitated by the Health Services Executive (HSE) Advocacy Unit.
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 in trying to understand aspects of his care had been a lonely road. I was disappointed by the lack of transparent engagement and felt 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. When I met Margaret Murphy I knew she had experienced something similar.
Open disclosure was discussed at the first PFPSI meeting I attended. In 2013, the HSE 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. Open disclosure 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. Learning from errors begins with acknowledgement.
In April 2015, Jane Pillinger, a researcher and policy adviser, 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, and improve understanding of patient perspectives and needs, including how incidents are viewed from the perspective of the patient and their families.
She also saw that healthcare staff learnt a lot from managing open disclosure. It encouraged a culture of honesty and openness, confidence, and a framework and organisational endorsement for open disclosure. It improved patient-clinician trust, professional responsibility, and 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.
Jane Pillinger also saw challenges, for example, medico-legal issues, fear of loss of reputation, fear of being reported to fitness to practice panels, a hostile environment resulting from media reporting, and differences in expectations between staff and patients and their 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.
To date, over 15,000 staff across the acute hospitals and community services have been briefed on open disclosure, according to yet to be published HSE data. Numerous resources to assist training and implementation have been established. “Train the trainer” courses were set up and patient advocates were invited to take part. PFPSI members have discussed patient stories at a number of venues and have shared their experiences and the importance of transparency and unencumbered honesty. When harm is done patients’ questions should be answered with candour. I believe that in the past honesty was sometimes suppressed and patients and families got an edited version. This cast doubt on the veracity of the information given to them. The 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. The bill went through Report Stage in the Seanad (Senate) in April and is now ready for final stages of adoption. It will protect 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? Opinion on this is divided. I feel that we should first engage with what we have and give it a chance.
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.
Bernie O’Reilly is a patient advocate and part of Patients for Patient Safety Ireland.
Competing interests: None declared.