About a third of patients in Australia’s hospitals are living with advanced progressive illness and likely to be in the last year of their life – but the quality of care they receive is inconsistent, and fails to address the type of care wanted by many of those patients, or their families.
Dr Claudia Virdun, a Senior Lecturer in Palliative and End-of-Life Care and part of the Flinders’ Research Centre for Palliative Care, Death and Dying, has been conducting research in hospitals to help rectify this.
“We have a solid evidence base from asking patients with palliative care needs, and their families, what they require for safe and high-quality care in the hospital setting,” she says.
However, ongoing research shows our hospital system struggles to consistently provide care for this group of patients in alignment with what matters most for their care.
“There was great enthusiasm for patients to have their thoughts heard, and we found that even very sick patients were keen to participate in our research. They want to ensure change for the better, and they had such rich, sensible ideas about how to improve care provision.”
Her research was prompted by questions that emerged during her work as a clinical nurse. “I was looking for consistency in the type of palliative care being delivered, so I had to ask why there was so much variance in the outcomes between different hospitals and even between wards,” says Dr Virdun.
“I wanted to learn what needed to improve at scale, so that the right type of assistance is being provided across the hospital system. To do this, I needed to take off my nursing hat and look at palliative care through the eyes of the patients and their families.”
Beyond taking simple measurements of palliative care data – such as length of stay in hospitals, or whether existing care plans are in place at hospitals – Dr Virdun’s research asked more pointed questions to address any barriers that exist to prevent optimal care, and to better address what matters most for patients with palliative care needs, and their families.
This included the importance of effective, compassionate communication between clinicians and patients that was honest, clear and explained situations in layman’s language – and placing an emphasis on shared decision-making.
“Patients living with advanced serious illnesses said that better communication is needed in hospitals so they can make better decisions about their futures, especially if they have limited time,” says Dr Virdun.
Also deemed important is the need for care and involvement of family members in palliative care, the maintenance of self-identity for patients, privacy issues, and factors affecting patient safety.
“Patient reported experience measures (PREMs) may provide one method to enable improvements – but current ones used by hospitals don’t tend to be completed by the most frail and vulnerable people, those who are elderly with advanced disease or those with palliative care needs. So, we wanted to test using a PREM that is designed for these people, and understand how to best support them to complete these questions if they want to.
“I have worked to find which measures best amplify patient concerns for people with palliative care needs, to inform better design and implementation of improvements.”
Dr Virdun’s study shows that collecting patient experience data and feeding this back to clinicians regularly, alongside working groups focused on improvement, enabled significant improvements in the quality of palliative care provided at ward level. “This is great, but we now need to better understand if this can be replicated in other settings and also whether such improvements can be sustained.”
This improvement approach is called the LEAP bundle – Listen, Empower, Act to improve Palliative Care – and has the potential to support clinical teams to provide optimal palliative care. Importantly, this bundle requires resources and executive support for clinicians to design and implement changes suggested by patient feedback.
A key area of focus is the LEAP facilitator who assists clinical teams to reflect on the PREM data, develop a shared vision in a clinical workplace and drive collective action. This critical role requires skill development and ongoing mentorship support.
Dr Virdun hopes Flinders University will be able to provide a national training program for clinicians to learn how to take on the role of LEAP bundle facilitators at their facility.
“We are now preparing for how this system can grow, how to ensure patients with palliative care needs are heard clearly, provide care that is tailored to their needs, and also support busy clinical teams striving to enable this within complex organisations,” says Dr Virdun.
“Importantly, we want to make sure these changes have full organisational support within hospitals and adequate resourcing – and then we will see significant change for the better for patients, their families and the health workforce.”