Opting Out of Dialysis

Last week, Steve Belcher RN interviewed me on his new podcast Health Talk: Conversations For A Better Life Podcast. During the podcast, he mentioned Renal Conservative Therapy. I didn’t know what that was. Listeners’ questions about it started appearing on the screen, too. Of course, it then became clear what the topic of today’s blog would be.

As to what Renal Conservative Therapy is, let’s turn to the UK’s National Kidney Foundation for their easily understood explanation:

“The aim of treatment conservative care is your wellbeing and quality of life.

Conservative care (also called supportive care) aims to:

• treat and reduce any physical symptoms of CKD such as:
– tiredness
– feeling sick
– itching
– swelling and breathlessness

• protect and maintain any remaining kidney function (where possible) by:
– controlling your blood pressure
– changes to your diet
– changes to your medication

• provide emotional, social and spiritual support
• plan for the future

Your care will be shared between the Renal Unit, your GP [Gail here: that’s what we call PCP or primary care provider here in the US.] and community services you may need. You will be seen in clinic, or have an appointment by telephone or video call, by a doctor and/or a specialist nurse, who will see you as little or as often as needed. The nurse specialist for supportive care will support you and your family at home and liaise with other services you may need.”

I understand what it means now, but honestly, I couldn’t figure out why anyone would choose this rather than dialysis or a transplant. Now, you’ve got to remember that I have neither been on dialysis nor had a transplant, so I didn’t really know what I was talking about.

The National Institute of Diabetes and Digestive and Kidney Diseases made the reasoning behind this choice clear to me:

“People who wish to focus their care on the quality of their life may choose conservative management.

For most people, dialysis may extend and improve quality of life. For others, this is not true. Dialysis may not lengthen life for all people who have kidney failure and can feel like an added burden, especially for people who have other serious health problems. Dialysis may not prolong or improve the quality of life for people who

• are elderly and frail
• have other serious health problems, such as dementia, heart failure, or cancer”

I couldn’t help but wonder if choosing Renal Conservative Therapy would shorten your life. I turned to KidneyCare UK for help in answering my question:

“It is difficult to be accurate about life expectancy, as this depends on your individual medical conditions, general level of health and the speed that your kidney disease has progressed.”

I found that interesting since some trusted sites mentioned a year or two, while others made it clear that your age, general health, comorbidities, and living conditions all will affect how long you may live with Renal Conservative Therapy.  

Steve mentioned that Renal Conservative Therapy is not palliative care. The National Institutes of Health explained why:

“You may hear conservative management called comprehensive conservative care, supportive care, nondialytic care, and comfort care. You also might hear the term ‘palliative care,’ which is one part of conservative management. Palliative care addresses the physical, psychological, and spiritual needs of someone with a serious illness.”

Frankly, I found this confusing since some of the sites I looked at considered the two to be synonymous.

Hospice kept popping up in my searches. That made no sense to me since Renal Conservative Therapy is to keep you comfortably alive as long as possible, while hospice exists to help you die comfortably. Back to The National Institute of Diabetes and Digestive and Kidney Diseases for a definition of hospice:

“Hospice is a program of care and support for people at the end of life. A trained team of health professionals and caregivers provide symptom and pain relief as well as emotional and spiritual support. The hospice team also supports family caregivers.

With hospice care, you may choose to die at home or in a home-like hospice setting instead of in a hospital.

Medicare, the federal health insurance program, covers hospice care.”

What we’ve figured out here is that Renal Conservative Therapy is not hospice and may or may not be considered palliative care depending upon your source.

Let’s see what else I can find out about Renal Conservative Therapy for us. PubMed seems to summarize the information I’d been looking for:

“At a certain point, patients with kidney failure will need to decide whether or not to start kidney replacement therapy, i.e. dialysis or kidney transplantation. An increasing number of patients choose to forgo dialysis or transplantation and opt for conservative care. In part, this trend is explained by the ageing population of patients with kidney failure and a more limited survival benefit for dialysis in older patients. Conservative care is a holistic, patient-orientated treatment, aimed at quality of life, advance care planning, reducing symptom burden, and slowing the deterioration of kidney function. As such, conservative care is an active treatment and not merely forgoing kidney replacement therapy….”

I’m interested in the history of this type of kidney failure treatment but was unable to find any information about that. Please let me know if you have any information about this. However, the following from the Mayo Clinic posted last month may be a clue:

“If your kidneys can’t keep up with waste and fluid clearance on their own and you develop complete or near-complete kidney failure, you have end-stage kidney disease. At that point, you need dialysis or a kidney transplant.

• Dialysis. Dialysis artificially removes waste products and extra fluid from your blood when your kidneys can no longer do this. In hemodialysis, a machine filters waste and excess fluids from your blood.

In peritoneal dialysis, a thin tube inserted into your abdomen fills your abdominal cavity with a dialysis solution that absorbs waste and excess fluids. After a time, the dialysis solution drains from your body, carrying the waste with it.

• Kidney transplant. A kidney transplant involves surgically placing a healthy kidney from a donor into your body. Transplanted kidneys can come from deceased or living donors.

After a transplant, you’ll need to take medications for the rest of your life to keep your body from rejecting the new organ. You don’t need to be on dialysis to have a kidney transplant.

For some who choose not to have dialysis or a kidney transplant, a third option is to treat your kidney failure with conservative measures. Conservative measures likely will include symptom management, advance care planning and care to keep you comfortable (palliative care).”

Notice that conservative measures, what we’ve been referring to as Renal Conservative Therapy, is treated as an add on rather than an established therapy.

Until next week,

Keep living your life!