Comment: Rule must change to allow dialysis as end-of-life care

An outdated rule may change to allow patients in palliative care to receive the comfort of kidney dialysis.

By Matthew Rivara and Mackenzie Daniek / For The Herald

More than 1 in 7 American adults live with chronic kidney disease, making it one of the most common chronic disease conditions in the United States.

Further, chronic kidney disease (CKD) disproportionately affects racial and ethnic minority groups, including members of Black or African American, Asian, Latinx and Pacific Islander communities. Those with advanced kidney disease that leads to end-stage renal disease (ESRD) have only two ways of surviving: receiving regular dialysis treatments to clean the blood of waste and water — replacing the work of healthy kidneys — or receive a kidney transplant. Unfortunately, dialysis does not replace all of the kidney’s functions and not everyone qualifies for or can find a kidney for transplant.

To make matters worse, the way the Medicare system pays for end-of-life care puts patients dying from ESRD at a significant disadvantage over people who are dying from other causes. Medicare, the federal health insurance program for people 65 and or for those with certain disabilities, covers dialysis treatments for people with ESRD. Medicare also covers end-of-life hospice care through the Medicare hospice benefit program. However, with the way the reimbursements are set up, Medicare will generally not reimburse health care providers for dialysis treatments if a patient has elected to enter hospice care, as dialysis treatments are considered by Medicare to be “curative” rather than “palliative” care.

Because of this, most patients getting dialysis for ESRD must forego all dialysis treatment after entering a hospice program.

The U.S. Department of Health and Human Services’ Centers for Medicare & Medicaid Services (CMS), which sets the rules for Medicare and Medicaid reimbursements, has observed that “hospice enrollment for Medicare beneficiaries receiving maintenance dialysis for end-stage renal disease occurs less than half as often and much closer to the time of death compared to the general Medicare population.” This can result in pain and distress for these dialysis patients and their families.

This is not only harmful to patients, but studies conducted locally by non-profit organizations, including Northwest Kidney Centers and Providence Hospice of Seattle have concluded that this system that tries to save money upfront may actually cost more money down the line.

That’s because dying dialysis patients spend more time in intensive care units and emergency rooms and more time in the hospital. If they could receive palliative comfort care and hospice care while receiving dialysis treatments — even if they choose to have fewer treatments than they would to stay alive — they would be more comfortable at the end of their lives, and it would cost less.

In a pilot study, these two local organizations found that by offering end-stage kidney patients the option to receive hospice care and dialysis at the same time, this allowed them to have more control at the end of their lives in the dying process.

The lack of a smooth transition off dialysis and inadequate end-of-life support can lead to significant unmet comfort care needs, including pain, shortness of breath, itching, confusion, nausea and other symptoms. And because it may take some time to organize appropriate hospice services for an individual, stopping dialysis suddenly leads to a particularly chaotic end-of-life transition, complicating not only physical symptom management but also the emotional and spiritual distress for patients and family members at such a vulnerable time. Rather than providing comfort care for pain relief and symptom management, the denial of all dialysis services actually imposes pain and thwarts symptom management.

A well-constructed, funded and promoted federally endorsed palliative dialysis program aimed at comfort care rather than curative care could improve quality of care and reduce costs.

The Centers for Medicare & Medicaid Services is working toward changing its rules to make it easier for dying dialysis patients to receive hospice care without immediately foregoing all dialysis treatments. These new rules include specifically stating that dialysis patients can get both services with a payment plan that covers the cost of hospice and dialysis care, so patients receive the best care possible, and the dialysis and hospice providers are paid for their services.

We strongly support these rule changes that would offer financial reimbursements for both hospice and dialysis care. We not only urge CMS to continue to make changes that will ultimately help dying dialysis patients and their families, but to proactively inform dialysis providers, hospice providers, physicians, patients and their families that they now have this humane end-of-life option.

Dr. Matthew Rivar is chief medical officer of Northwest Kidney Centers. Mackenzie Daniek, master of health administration, bachelor of science in nursing, RN, certified hospice and pallative nurse and administrator, is director of Providence Hospice of Snohomish County.

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