New Clinical Model to Manage Terminally Ill IPF Patients Decreases Suffering and Costs

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

Share this article:

Share article via email
clinical model for IPF

A new clinical model for terminal idiopathic pulmonary fibrosis (IPF) that allows patients to receive treatment at home has increased patient satisfaction, decreased hospital deaths, led to better symptom management, and lowered healthcare costs.

Those outcomes of this new clinical model were published recently in the journal NEJM Catalyst, in a study titled “From Consulting to Caring: Care Redesign in Idiopathic Pulmonary Fibrosis.”

The clinic that introduced this new model in 2012, the Alberta Health Services’ Kaye Edmonton Interstitial Lung Disease Clinic, was chosen as an emerging innovation in palliative care in 2017 by the Canadian Foundation for Healthcare Improvement. The clinic delivers palliative care, and encourages at-home treatment for IPF patients.

Both patients and caregivers have been highly satisfied with the care and training given to enable them to manage IPF at home. Specifically, the clinical model has allowed 67% of patients to die at home, according to the patients’ wishes, compared to only 33% in the hospital.

These results are in clear contrast to data reported from clinics across the United States and the United Kingdom, where only up to 14% of patients have had home deaths, while 57–80% died in the hospital.

The Edmonton clinical model also has resulted in a reduction in the number of emergency visits and hospital admissions during the past six months of a patient’s life. This led to a 27% decrease in costs of caring for the patients, compared with IPF patients cared by other respiratory specialists or non-specialists in the province.

The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!

“Not only are we delivering improved quality of care, the cost to the system is lower,” Meena Kalluri, MD, the study’s author, said in a press release written by Gillian Rutherford. Kalluri is associate professor of pulmonary medicine at the University of Alberta, Canada, and the one who introduced the new clinical model.

One of the most critical symptoms for IPF is shortness of breath (dyspnea); however, it often is overlooked and not treated accordingly. Furthermore, according to the team, when a patient enters the hospital with dyspnea, multiple tests for illnesses such as embolism, pneumonia, and heart attacks, are carried out.

“These tests and treatments are futile, and are often harmful to the patient and traumatic for their caregivers,” said Janice Richman-Eisenstat, MD, a study author, and associate clinical professor in pulmonary medicine at the University of Alberta.

“I realized there was an urgent need to start doing things differently,” said Kalluri. “We must not only make the right diagnosis, but also focus on what the patients are really going through with these incapacitating symptoms and provide relief.”

In the Edmonton clinic, 95% of patients receive opiate treatment in their last months (on average four months), while this is available to only 71% of patients in other clinics and only within the last week of life.

Furthermore, patients and their caregivers (such as family members, home care nurse practitioners, respiratory therapists, and family physicians) are given training to be able to administer therapies and oxygen whenever patients experience shortness of breath. This can prevent a crisis, and the need for patients to go to the hospital. The clinic also offers patients strategies to manage breathlessness, allowing them to carry on with life activities.

The clinic team believes in starting advance care planning with patients early, sometimes even during the first visit. This contrasts with the view of some medical practitioners, who may limit discussions about death with their patients for fear that patients may lose hope.

“By talking about death and acknowledging what is coming, patients have time to prepare,” said Richman-Eisenstat.

“Having open, honest information is actually empowering to patients. The families are able to rally around and say what they want to say to each other, do some of the things they want to do,” Kalluri added. “Creating memories is a very good way of coping at end of life. It lessens grief.”

While the clinic focuses on IPF, the team believes the same model potentially can be applied to treat other chronic and terminal illnesses.

“It brings me so much hope that we can totally revamp our healthcare system to be patient-centric,” Kalluri said.

“Even though we don’t cure, even though the patient passes away, there is beauty at the end of life when you can meet patients’ needs, give them some dignity back, and support families positively,” Kalluri said.

Your PF Community

Woman laying down reading

Visit the Pulmonary Fibrosis News forums to connect with others in the PF community.

View Forums