Chronic kidney patient and patient family advisor improves experience for dialysis patients in Nova Scotia

Rosemary MacDonald had her first kidney-related surgery at the age of nine and has been a chronic kidney patient since then. At 17 she received her first kidney transplant from her mother. 

The kidney lasted 14 years and then she had to start dialysis. 

Dialysis is a lifesaving procedure where the patient’s blood is circulated through a machine which acts as an artificial kidney to remove waste and excess fluids. The cleansed blood is recirculated back into the body.

Patients on dialysis typically spend three days a week at a hospital dialysis unit for between three to five hours per visit.

“I spent 13 years on dialysis at the Dartmouth General Hospital with the same nurses,” said MacDonald. “We got to know each other quite well and created a unique bond.”

While she was a dialysis patient MacDonald was asked if she would become a Patient Family Advisor (PFA) and join the Kidney Patient Advisory Council (KPAC).

KPAC is made up of PFAs and a few staff members. The role of the council is to provide input on projects and initiatives that improve patient experience.

“It's a privilege to be able to give back in some way,” said MacDonald. “It's important that we're part of the solution. There are doctors, and nurses. And then there's us—the patients.”

Lisa Joya is the director of policy directives initiative planning and development in the Nova Scotia Health Renal Program. 

When she joined Nova Scotia Health three years ago, she was part of the team that revised the Renal Plan—a road map for planned improvements to the Renal program. 

Following consultations with healthcare providers it was decided that a provincial approach was required to orient renal nurses who join the program.

The Renal program went to KPAC and asked the very people with that lived experience, “what do you wish your nurses knew about the experience of living with chronic kidney disease (CKD)?”

“We had really great and engaging conversations, and came up with a number of consistent themes,” said Joya. 

A video, Kidney Care: The Patient Perspective, was created featuring four CKD patients. Each participant was asked these questions:

•    What positive experiences have you had with a renal nurse?
•    What do you think makes a great renal nurse?
•    What is one thing your renal nurse should know about being a patient?
•    What advice do you have for a new renal nurse?

MacDonald said many CKD patients feel really vulnerable going to appointments.

“I’m coming to the chair with an abundance of uncertainty, fear, and I’m relying on nurses taking care of me,” explained MacDonald. “Take time to explain what you’re doing. Don’t come at me and rush to get it done. I’m a person, please treat me like a person.”

Since this video was developed in July 2023 it’s become part of all renal nurse orientation training at Nova Scotia Health. 

Current and experienced Renal nurses at Nova Scotia Health were asked to watch the video and provide feedback. Almost a hundred nurses provided feedback. All were   very positive and echoed the similar sentiments. 

“It is very easy to just do your job. But when we take the time to talk to them and actively listen and hear them, it makes a huge impact on the patient's whole experience. Especially when they are seeing us at their very worst. Empathy and caring go a long way. It's the art of nursing that we sometimes don't make time for in our busy scheduled days. Very touching video series! I hope there are more in the future.”

KPAC has other initiatives underway aimed at improving patient experience including a pamphlet created for patients and families developed by the patients themselves. 

MacDonald was part of the pamphlet initiative. 

“I feel this pamphlet could bridge the gap of medical terminology and make it more readable or understandable to patients.” said MacDonald. “It actually gives patients tools that they could use to help them on this journey.”

Patient Family Advisors (PFAs) are patients, their family members and/or caregivers who volunteer as active members of Nova Scotia Health teams. They provide feedback that helps teams as they set priorities and make decisions that can impact the health care system and the community.

Learn more, or apply to become a PFA here: https://www.nshealth.ca/get-involved/become-patient-family-advisor 

Photo: Rosemary MacDonald is a patient family advisor and sits on the Kidney Patient Advisory Council at Nova Scotia Health.