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  • Patient Safety Spotlight interview with Isabela Castro, patient advocate

    • UK
    • Interviews and reflections
    • New
    • Everyone


    This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Isabela shares how her experience of losing her baby daughter to avoidable harm in 2006 led to her involvement in patient safety advocacy. She talks to us about the vital role of patient campaigners in driving the movement to reduce avoidable harm, and why we need to shift from patient inclusion to belonging in order to improve patient safety.

    About the Author

    Isabela became a patient advocate following the death of her newborn daughter in NICU and her own near-death experience with eclampsia. She served for seven years in the Brazilian Air Force as a specialist dentist and worked for 10 years at United Health Group as a specialist dentist and consultant for innovation and patient experience initiatives. She is a global activist with the worldwide movement What Matters to You? (WMTY) and has served on the boards of the Beryl Institute Planetree International and the International Society for Quality in Healthcare (ISQUa). Isabela is an Improvement Advisor and fellow of the Institute for Healthcare Improvement, Planetree and ISQUa.

    Questions & Answers

    Hi Isabela, please can you tell us who you are and what you do?

    My name is Isabela Castro, I’m Brazilian but am currently living between Portugal and Brazil while I complete my PhD in Public Health. My background is in dentistry; I started my career as a paediatric dentist and then started working as a dentist for the airforce.

    In 2006, my daughter Laeticia died four days after her birth, due to avoidable harm in the NICU. About two years after she died, I ended up meeting a family in the NICU at the hospital I worked in as a dentist. As I spoke to the mother, I recognised myself and my own experience. It was then that I started to informally advocate for patients. I didn’t even realise that I was doing advocacy, as it was a little known concept in Brazil at that time! Since then I have become immersed in the world of patient safety and have spoken at events and conferences, including World Health Organization (WHO) events, as well as working regularly with patients.

    How did you first become interested in patient safety?

    Looking back, I think advocacy has always been part of my life. My sister has cerebral palsy after my mother suffered harm at her birth, and my mother always strongly advocated for her. My mother also had bipolar disorder and I was her caregiver for many years. So I have a lot of experience dealing with illness and the healthcare system. My own experience of pregnancy, birth and the death of my daughter in the NICU was a turning point for me, as I started to understand the vital importance of healthcare organisations listening to patients.

    My patient safety advocacy has become more global as I have knocked on doors to connect with others who want to see the same goals achieved—a reduction in healthcare harm and patients being given a central role in every aspect of their care. It brings me a lot of happiness knowing that hopefully I am helping other people, and especially other women, avoid suffering what I experienced.

    Can you tell us about your experience of pregnancy, maternity and labour care?

    In 2006, I was in my third trimester, expecting my first child, and started to feel very unwell. When I tried to walk to the car park to meet my husband, I fainted. I knew that something was very wrong and my husband took me to the closest hospital. It was late morning when we arrived and the hospital did no observations or tests for several hours, even though I now know that I had three classic symptoms of preeclampsia. In the evening, when there was a change of shift, the medical team finally realised the seriousness of the situation and took me for an emergency caesarean section under general anaesthetic. They told members of my family that they could only save one of us—myself or my daughter.

    Amazingly, both of us survived. A nurse told me that my daughter Laeticia was doing well but that she needed to go to the NICU just to gain some weight. The next day I finally got to visit the NICU to see Laeticia—even as her mother I was only able to visit between 3 and 5pm. I was told by hospital staff that the next day we would be able to remove her feeding tube and try to feed her, so I spent the whole night trying to express enough milk.

    But when I arrived the next morning, full of pride that I had managed to express two bottles, the doctor in charge laughed at me in front of the other patients. She was aggressive and told me, “Your daughter is the worst baby in this NICU, why have you brought milk here?” I was shocked and embarrassed, and the memory of that interaction has stayed with me to this day.

    I still don’t know exactly what happened that meant Laeticia deteriorated overnight. I returned home with no answers—nobody communicated what was going on to me or my husband. When I went to the hospital on Thursday they told me they thought her kidneys weren’t working and they were still deciding whether to give her dialysis. On Friday morning, the hospital called and asked us to come in earlier. At that point, I knew that Laeticia had died, even though they hadn’t told me. Sure enough, when we arrived, my fears were confirmed. The doctor on shift that morning was more gentle and compassionate than any other we had seen. She described what had happened to Laeticia and tried to make it easier for us to hear.

    My life has never been the same since. At the time, I was a young mother and had no idea about how mine and Laeticia’s experience should have been different. But after her death I took a deep dive into the world of patient safety and started to understand the missed opportunities—there were lots of ‘what ifs’ that would have made a difference. 

    For example, there had been many opportunities during my pregnancy to detect my preeclampsia, but they were missed. Throughout my pregnancy I had been told everything was going fine, but I was gaining a lot of weight, which worried me. When I raised it with my doctor, she didn’t listen to my concerns—instead she made fun of me, saying I was eating too much. I believe the failure to listen to my concerns and the lack of dignity I was shown by various doctors contributed to my daughter’s death.

    What patient safety issues does the healthcare system face at the moment?

    Although there are now many activists and campaigners trying to make a difference in how the healthcare system views patient safety, we’re still a small minority. How many famous patient safety speakers do you know? People are still dying, mothers are still losing their babies, especially women of colour. We haven’t seen enough progress in the 16 years since my daughter died. 

    The biggest challenge is for institutions to genuinely want to see change. One area where we have made some progress is in designing measures to create the basics of patient safety, such as accreditation. But there needs to be a stronger intent to see these measures actually doing what they were designed to do. Organisations must make themselves accountable in an environment of shared power—it’s not about posting evidence of patient engagement on your website in order to look good. As patient advocates, we know that we can really make a difference when we work in partnership with system leaders, so we need to find leaders who want to see genuine change. On one occasion, I was invited to share my story with a hospital board—I talked about my experience and ended up quite upset. After I had finished, the chair immediately moved on to the next agenda item and it felt so dismissive. Genuinely involving patients, listening to and learning from their stories is something lots of institutions need to work on.

    It’s time to move from inclusion to belonging, and that’s about getting away from tokenism. Patients having a ‘seat at the table’ doesn’t always make a difference. When I had Laeticia, I only had a seat at the table from 3-5pm and that wasn’t enough to allow me to participate, ask questions and have psychological safety. A mother should not be a visitor, they should have the right to be with their baby at all times.

    Patients and their families need to be an integral part of the healthcare team. They need to be given agency to do their part to ensure their care is safe. I believe it’s up to institutions to empower patients to do this. They need to create an environment where patients can be active in their care, having the chance to raise their concerns and participate. There is still a stigma attached to being an ‘aggressive patient’ when you raise concerns, and that needs to change so that patients feel safe to speak up.

    What do you think the next few years hold for patient safety?

    The patient safety movement is being driven by patient advocates like me who have experienced harm, either ourselves or through a family member. We are getting together to push the agenda, where institutions are failing to take patient safety seriously. One example is Patients for Patient Safety US (PfPS) which has a lot of champions pushing for change. Together, we are stronger and we create agency that comes horizontally from civil society, rather than vertically from the governments and healthcare systems. Through small actions, we can build a culture, both locally and worldwide, and there is power in culture.

    Which part of your role do you find the most fulfilling?

    I find it most fulfilling to be in the real world dealing with patients and families. In my work as a dentist I have to deal with MDTs, which is a great opportunity to advocate for patients. I facilitate conversations between patients, their families and healthcare professionals, particularly in difficult areas such as palliative care for the elderly, or where children with neurological disorders are receiving treatment. I’ve been on boards and consultation committees, but nothing beats being with people. Being able to support others is very healing for me. There is no visibility or spotlight on advocacy, but it’s the best part of my work.

    Are there things that you do outside of your work that make you think differently about patient safety?

    I find it important to take time out of my advocacy and academic work to unwind and reconnect with nature. I love travelling and learning about other cultures and do a lot of gardening. I find it very therapeutic to have my feet in the soil!

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