71% of Americans don't know what palliative care is even though it can save patients thousands—a new tool aims to change that


About 37 million Americans — more than one in seven — are estimated to have chronic kidney disease, according to the Centers for Disease Control and Prevention.

For those on the severe end of the spectrum with kidney failure, the most common treatment option is dialysis. But dialysis is not a cure for kidney disease, and it can be expensive. The total out-of-pocket cost for a year of dialysis treatment is about $15,300 for those in New York City who can get in-network coverage, according to estimates from the independent nonprofit FAIR Health. That includes a range of costs that you may or may not incur, including outpatient procedures, doctor's fees, labs and medications. 

Those who seek out-of-network treatment, or are uninsured, should expect to pay more than double: $36,600. That is a high cost for a treatment that, for some, may not maintain or improve their quality of life. 

Depending on the stage of kidney disease, and your overall health, patients may instead be able to manage their symptoms through medications and other therapies — a medical approach referred to as palliative care. FAIR Health estimates that patients opting to go this route will spend between $700 and $2,100, depending on their insurance situation, significantly less than dialysis. 

Of course, deciding to make significant changes to your treatment plan can be fraught for patients and their families, especially if they are dealing with a chronic and/or life-threatening illness. To help make it easier to compare treatment options, outcomes, expected symptoms and even costs, FAIR Health released a new tool called "shared decision making."  

A screenshot of FAIR Health's tool giving patients and their families and overview of what palliative care entails. 

FAIR Health's tool, though still limited at roll out, walks users through the types of available treatments and palliative care options for three scenarios: kidney dialysis, breathing assistance and nutrition options when swallowing is difficult. 

The tool outlines what patients should expect if they undergo the treatment, what to expect if they opt not to take a certain treatment route and the estimated in-network and out-of-network and/or insured costs for facilities near them. 

FAIR tells CNBC Make It that these three treatments are just the start and that the organization is planning care and cost breakdowns for cancer treatments and orthopedic surgery.

What is palliative care? 

Palliative care is a medical approach that focuses on symptom management and improving patients' quality of life, and it's not just for those who are given a late-stage diagnosis or who are dying. It's a medical specialty that works to put patients and their families in touch with a team of doctors, nurses and social workers who are all on the same page.

"Palliative care can help reduce pain or the effects of treatment," Ellen Hummel, a palliative care specialist with the U-M Palliative and Supportive Care, said in an interview. "It can also help the patient and his or her family to understand the illness, talk more openly about their feelings and decide on a plan for ongoing care."

While more doctors and specialized teams may sound expensive, those who utilize palliative care actually can save money. On average, hospital costs are about $3,000 lower if patients start on palliative care within three days of being admitted, according to a study published in the Journal of the American Medical Association's JAMA Internal Medicine. The study found that palliative care led to shorter hospital stays, which can results in significant savings when you consider each day can cost hundreds of dollars.

And yet 71% of Americans say they know nothing about palliative care, according to an analysis of the 2018 National Cancer Institute's Health Information National Trends Survey.  

A screenshot of FAIR Health's tool showing the cost breakdown for dialysis treatments in New York City. 

How families can incorporate palliative care into treatments

For many Americans, medical decisions are a shared responsibility — either with their spouse or with other family members. And increasingly, it's a conversation that includes millennials and their aging parents. 

About one in four millennials are caregivers for parents and other family members with chronic, disabling or otherwise serious health conditions, according to a 2018 AARP report, which defined the generation as those 18 to 34. About two thirds of those millennials are shouldering these responsibilities before they turn 30. 

But helping out with that care and making decisions around treatment can be challenging, both emotionally and financially — so having accessible tools like FAIR Health's shared decision making site makes it easier to research the options and have open, informed conversations.

Families looking for guidance on where to find palliative care can use the Center to Advance Palliative Care's helpful provider directory to locate palliative programs close to your home or office. The Center also has a helpful questionnaire to determine if a palliative approach makes sense for your situation.

At the end of the day, it's about "empowering consumers and arming them with information to make smart decisions for them and their families," Robin Gelburd, president of FAIR Health tells CNBC Make It

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