Medical researchers developing tool to make end-of-life care more effective

New tool will standardize care while ensuring it remains patient-specific.

A new U of A project is hoping to provide patients and health-care providers with a roadmap for treating the final stages of chronic illnesses that will boost standards of care and help more patients stay out of the ER and hospital.

Led by U of A professor of medicine Sara Davison, the Supportive Care Pathway for Patients with Advanced-Stage Chronic Disease project will develop a standardized process of care, or a clinical pathway, for treating some of the most common chronic diseases seen in emergency rooms and hospitals, like heart failure or late-stage cancers.

The goal is to help primary care physicians and specialists work together to provide better patient care, improve quality of life and reduce the burden on acute care resources like emergency rooms.

"We're trying to really refocus on patient-centred care, and ensuring that care aligns with patient preferences," said Davison. "We're hoping to care for patients where they want to be cared for, at home and not at the hospital."

Clinical pathways are a fundamental tool in managing the quality of health care provided to patients. Similar to standard operating procedures in business environments, a clinical pathway is meant to address a patient's journey throughout their illness and each of the health-care encounters they will have along the way.

The pathway will indicate to any health-care provider what care a patient has already received, as well as the care they are likely to receive in the future. Not only can it help patients understand what they can expect as their disease progresses, it also makes it easier to approach patient care in a more comprehensive way, and improve the use of resources.

End-of-life focus

The web-based tool will include clinical guidelines on how to manage complications and symptoms, and when it's appropriate to refer the patient to home or palliative care. It will be highly interactive, customizing the information based on the individual being treated and helping health-care providers walk patients through the process.

"A doctor can use the tool to say to their patient, 'OK, you have advanced heart failure, and this is what that will likely look like over the next few months. These are the things we need to talk about, and these are the things you need to be prepared for,'" Davison said.

"The doctor is also prompted to determine the aspects of care most important to that particular patient, and can also say, 'These are the ways I can treat your symptoms, and these are the types of things you should go to the emergency room for.'

She said the tool will help physicians identify the point where life-sustaining treatments won't improve survival or quality of life, "where we can actually do better for them at home."

The Supportive Care Pathway project builds on Davison's previous work on the Conservative Kidney Management (CKM) project, designed to help patients with advanced kidney disease. The web-based tool provides patients and health-care providers with a better understanding of treatment options outside of dialysis, and arms them with a roadmap for the disease's progression and what care will be needed along the way. The tool, first introduced in 2016, also includes information about the symptoms of kidney disease and how to manage them.

Davison views the success of the CKM Pathway as a good foundation to expand into creating pathways for other diseases.

"The bottom line is that a patient is not just a kidney failure patient or just a heart failure patient," said Davison. "These patients are complex and can have several chronic diseases. We need something that is disease inclusive. Now seems like the right time to start spreading the kidney pathway to other diseases."

Rewarding success

The Supportive Care Pathway project was recently awarded $2.4 million from the Canadian Institutes of Health Research Rewarding Success Initiative. The project also received matching funding from Alberta Health Services and Alberta Innovates for a total of $4.8 million over the next four years.

Davison said she hopes to be able to launch the tool in the fall of 2020.