Congresswoman Diana DeGette

Representing the First District of Colorado
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Lawmakers Push Stronger Kids’ Hospice Coverage (Bloomberg)

Aug 1, 2018
In The News

A bipartisan coalition of lawmakers wants to patch up holes in hospice and palliative care for seriously ill children.

Rep. Diana DeGette (D-Colo.), alongside the co-chairs of the Congressional Childhood Cancer Caucus, is pushing a proposal (H.R. 6560) to allow states to develop comprehensive care programs tailored to critically ill patients who qualify for Medicaid and their families. The programs would offer a full support package, including palliative care, counseling, respite, expressive therapy, and bereavement benefits.

Medicaid’s coverage of these quality-of-life services for the critically ill is limited, according to the representatives. The plan would strengthen care for the patients and families of many of the 44,000 children who die each year and potentially decrease health-care costs. 

Underrepresented in Hospice

Studies show children nearing the end of their lives are underrepresented in hospice care, with fewer than 10 percent enrolled.

Lori Bishop, vice president of palliative and advanced care at the National Hospice and Palliative Care Organization, told Bloomberg Law misconceptions can hurt access when families wrongly believe they have to forgo aggressive or curative treatment to access comfort and end-of-life care.

Meanwhile, participation in pediatric palliative and hospice care programs—like the ones H.R. 6560 is prioritizing—decreased per-patient health-care costs by 11 percent ($1,677) in one month and the average length of hospital stays by 32 percent, according to a 2012 UCLA Center for Health Policy study.

“When you start to talk about where someone’s at in their disease and you also stop to listen to what matters most to them and ... start to go on this journey with them through their eyes, it makes a big difference,” Bishop said.

That leads to reduced emergency room and hospital usage and better symptom management as a team works to address barriers patients and families face, such as financial concerns, communication, and rest, she told Bloomberg Law.

The safety net health insurance program includes an optional hospice benefit states can opt into, but critics say it’s inadequate.

“Families with children facing life-limiting illnesses need all the support they can get, and they should be empowered to seek out that support,” Reps. DeGette, Jackie Speier (D-Calif.), Michael McCaul (R-Texas), G.K. Butterfield (D-N.C.), and Mike Kelly (R-Pa,) said in a statement. 

A ‘Targeted Message’

The Children’s Program of All-Inclusive Coordinated Care Act has been referred to the House Energy and Commerce Committee, where DeGette is a senior member.

Bloomberg Intelligence analyst Brian Rye told Bloomberg Law in an email that the timing of the bill’s introduction—at the beginning of a six-week summer congressional recess and less than 100 days before midterm elections—shows the proposal is “perhaps more of a targeted message to the group’s voters and less of an effort to fast-track a bill.”

The lawmakers could still pursue the same goals by working with the Centers for Medicare & Medicaid Services on administrative changes without congressional action, he added.

DeGette told Bloomberg Law in an emailed statement the plan “addresses a need on which just about everyone agrees, and it deserves widespread support.”

The bipartisan changes would come after a year of heated partisan debate over putting Medicaid on a budget.

Speier pointed out that her state of California is “leading the way” on these types of comprehensive care programs through a Medicaid waiver but said the process can be “onerous.” 

Holes in Care

Lifting Title XIX of the Social Security Act to allow state Medicaid to cover the programs would “fill existing gaps in Medicaid’s hospice and palliative care that add a needless, heavy burden to families facing their most trying times—when what they need is greater comfort and peace of mind,” DeGette said.

Kids “have different hospice and palliative care needs than adults given their changing physiology, and we must appropriately accommodate our laws to fit their needs,” Republican Rep. McCaul said in an emailed statement.

Palliative care includes support services for critical diseases like cancer. Hospice is reserved for the six-month end stages of disease. They typically are combined into one program for children, Bishop said. But support before a patient is staring down a fatal prognosis is harder to come by.

“There isn’t a benefit essentially for palliative care,” Bishop said.

There’s currently no mechanism for billing palliative care services, which instead are often reimbursed as provider visits or through contracts with accountable care or managed care organizations.

That means there are few regulations and standards over what palliative care should look like—leaving holes such as bereavement services or in the holistic approach that requires a team of doctors, nurses, social workers, chaplains, and volunteers, Bishop said.

“We appreciate the need to take that model of hospice care and move that model upstream so that any child with a serious illness and their family have access to services sooner and comprehensive services like the hospice model provides,” she said.