Sepsis cannot be addressed by a single scientific or healthcare discipline. Care for critically ill patients is complex and requires team members from across the health provider spectrum. This can include those in emergency medicine, critical care, surgery, oncology, transplant and a variety of other disciplines. Yet silos in our health system can reduce the quality of care experienced by patients and their families, both in-hospital and post-discharge – and this experience can be magnified for indivuduals with existing medical challenges or conditions, as Beth & Tony’s story highlights:
Our journey is not a straightforward tale of 'life before sepsis --> sepsis --> create a 'new normal''. Tony is a lung transplant recipient and we were beginning to readjust to life after the transplant in Victoria when he was struck by a car and hospitalized two years ago. Due to his status as a transplant recipient, he was transferred to a hospital in Vancouver, where he developed sepsis due to a perforated bowel. We’ve since learned he was a prime candidate for its development due to his immunosuppressed status.
Tony was in the hospital for 6 weeks. He experienced significant delirium while in the ICU and it remained even back in the step-down unit. I was asked a number of times when his last colonoscopy had been – despite this being done at the same hospital. He was discharged back to Victoria without a GP and without prescriptions for pain medications, and it took us 2 weeks to find appropriate care from a local rehabilitation center, as the only referrals we received in Vancouver were located in Vancouver. While he was in the hospital, he received an ileostomy (surgical opening between the small intestine and abdomen), due to the bowel surgery. Unfortunately, after discharge I couldn't look at the wound without becoming light-headed and my inability to help Tony when he needed it is still a point of pain for me. We both felt unseen and unsupported. I honestly don't know how we got through that time. We certainly aren't unscathed.
Due to the emergency with his perforated bowel, his bone fractures were put on the back burner and he has lingering, sometimes shooting/debilitating pain in his left shoulder that radiates up into his left ear. However, this is only the tip of the iceberg. Tony now feels like a different person – with chronic fatigue, cognitive issues (poor recall, issues putting sentences together, remembering words), and unprovoked and constant anger now regular parts of his life.
Unfortunately, our story hasn’t ended here. In 2021, he was once again hospitalized for a hernia repair surgery (after his previous ileostomy had been reversed and subsequently herniated). His planned 2-day stay led to a 9-day stay after he had aspirational pneumonia and I heard the word ‘sepsis’ again in the ICU. Because of the COVID-19 pandemic, I wasn’t allowed on the first ward he was placed on during the first 24 hours after surgery. I could only contact him by phone and it took me a number of hours to notify hospital staff that his belongings - including his phone - had gone missing. When I was able to speak with him I found he was not doing well because his pain wasn’t being controlled. The surgical team hadn’t wanted to refer Tony to the Complex Pain Team in the hospital because his stay was only supposed to be 2 days and the pain team apparently takes 3 days to respond.
During this time Tony was in the worst pain of life, even telling me he would have jumped out the window if he could. It was on this ward that Tony aspirated while trying to eat lying down and developed pneumonia. It was a relief to both of us when he landed in the ICU and received the care he needed.
Our story is one of navigating a healthcare system that is massively siloed, and can overlook the mental health or social supports that are integral to the lives of patients and families. We are still chasing down diagnoses for his cognitive issues and the fact he sleeps most of the time. Tony is also now on his 4th primary care provider in Victoria in as many years - his last GP and his new NP are not equipped or supported in dealing with the many aspects of his care. We respect the frontline health workers who are supporting patients like Tony – but also hope that by sharing this story we can drive progress on policies and practice that improve patient-provider communication, break down silos and support improved follow-up care for those who need it.