A recent New York Times article reported an increasing trend in home dialysis and an expectation from US officials that, by 2025, 80 per cent of new end-stage renal disease patients would either be receiving home dialysis or a transplant.
Dr. Abeed Jamal, medical director in the peritoneal dialysis program at St. Paul’s Hospital, confirms a local movement towards home dialysis with almost 30 per cent of St. Paul’s dialysis patients undergoing treatment this way.
“At St. Paul’s, we actively promote a transplant-first initiative followed by home therapies,” says Jamal. “Additionally we continue to broach home-based therapies and options with our patients on in-centre dialysis through our nursing staff and patient navigator.”
Dr. Abeed Jamal
Dialysis is the process of removing waste products and excess fluid from the body. It becomes necessary when the kidneys can’t adequately filter the blood, and enables patients with kidney failure to live productive lives. Hemodialysis uses a machine and filter to accomplish this. Peritoneal dialysis involves a fluid (dialysate) that is placed into the patient’s abdominal cavity to achieve the same result.
Pros and cons of home dialysis
According to Jamal, there are many benefits to home dialysis. Patients are able to dialyze in the comfort of their own homes. They are not tied to as strict a schedule, and travel time to and from dialysis is reduced. They enjoy a better quality of life and often their diet is less restrictive. It’s normally a less costly alternative when compared to in-centre therapy.
Jamal says that the downside of home dialysis is that patients and/or their caregivers must take on the responsibility to perform the dialysis, learning the technique and making care decisions for themselves (with support from their care team). Having a support person at home, such as a spouse or other family member, is a valuable asset.
Accessing dialysis in one of the province’s most remote areas
Atlin resident Grace Sudlow, 42, is an example of home dialysis under atypical circumstances. A child support worker at the Tlingit Family Learning Centre for the Taku River Tlingit First Nation, she lives with her husband, Rick Sudlow, and her daughter in the northwest corner of BC near the Yukon/Alaska border. She has been receiving peritoneal home dialysis through St. Paul’s for a year after undergoing treatment there and being placed on the kidney transplant wait list.
With a latitudinal location slightly south of 60 degrees, the Sudlows face some unusual challenges with delivery of dialysis supplies. They’ve had to build a special storage room to house and support the weight of a large inventory of boxes of dialysate, as well as ensure that the supplies do not freeze and are still usable.
Sudlow says his wife has good days and bad. The dialysis process sometimes results in abdominal pain, and sleep is interrupted. She has memory difficulties, too, but the couple thinks that the medications and stress may be at the root of this.
“Grace embraced this therapy because she knew she had no choice, that this therapy would keep her alive,” said Sudlow. “It was scary, but we both knew we needed to jump in and learn as much as we could. Most of all we get our life back. But nothing will be greater than the day Grace gets her transplant and things go back to normal.”
The price of life-sustaining therapy
Jamal admits that the overall toll of dialysis on patients – whether at home or in-centre – can be great. The mortality associated with dialysis is significant with death rates higher than those for both colon and breast cancer. In-centre dialysis is physically demanding as patients often feel fatigued and wiped out after therapy, spending their off days merely recovering from the prior day’s treatment. While home-based therapies are, generally speaking, an improvement, the burden of performing dialysis as a life-sustaining therapy remains heavy.
“We continue to see caregiver stress and burnout,” says Jamal. “While transplant affords a great option for many patients, the wait times for deceased donor transplants are still long and patients certainly feel emotional stress waiting for a transplant as they hope they don’t become too ill during that waiting period to receive a transplant.”
The future of home dialysis
Home dialysis technology is improving. New machines for peritoneal dialysis with remote monitoring are entering the market, allowing care providers to monitor and help patients adjust dialysis from a distance. Smaller home hemodialysis machines have also been introduced, which enable ease of travel and utilize smaller amounts of water, allowing for more widespread use and reducing the need for plumbing modifications to the home.
As for the future of the home dialysis program, Jamal says that St. Paul’s will continue to advocate for and promote independent therapies as well as for pre-emptive renal transplants with its transplant-first initiative.
“An integrated focus on patient-centred choices with ongoing advocacy for home-based therapies will remain our focus moving forward,” says Jamal.
