Caregiver Talk on Capitol Hill

Speaking Out for Caregivers

Approximately 250 physicians, nurses, social workers, chaplains, home health aides and volunteers made their way to Capitol Hill this week to meet with members of Congress. They are telling their stories in an effort to affect positive policy change for patients and their family caregivers. Their goal was to meet with policymakers and advocate for best practices in hospice and advance care planning.

The event was planned to coincide with the 2016 Hospice Action Network (HCN) and the National Hospice and Palliative Care Organization’s (NHPCO) annual Advocacy Intensive.

“Since the inaugural HAN Advocacy Intensive in 2012, more than 1,000 hospice advocates have shared their caregiving stories on Capitol Hill,” says NHPCO President and CEO J. Donald Schumacher. “Our advocates make quite an impact on Members of Congress and leave Washington with tools and resources to advocate for hospice in their own community.

More than 300 meetings were scheduled with lawmakers to seek support for three policies: Personalize Your Care Act of 2014, Rural Access to Hospice Act, and the Care Planning Act.

• Personalize Your Care Act of 2016 [HR 5555], sponsored by Congressmen Earl Blumenauer (D-OR) and Phil Roe (R-TN), authorizes an Advanced Illness Management and Choices Demonstration, which allows individuals with chronic and advanced illness to receive both conventional, curative treatments along with hospice and palliative care services. It also provides additional resources to educate consumers and providers about advance care planning, and requires that advance directives be included within a patient's electronic health record in order to increase the likelihood that the documents are kept up-to-date and easy to locate.
• Rural Access to Hospice Act [S 2786], sponsored by Senators Capito (R-WV) and Shaheen (D-NH) in the Senate, introduced by Congresswomen Jenkins (R-KS) and Congressman Ron Kind (D-WI) in the House , will address statutory barriers that restrict some patients' primary care physician from becoming their attending physician during hospice care.
• Care Planning Act [S 1549], sponsored by Senators Warner (D-VA) and Isakson (R-GA) creates a new Medicare benefit for care planning services offered by a hospice-like interdisciplinary team. Research indicates that team-based care planning results in more comprehensive, individualized plans and that individuals who receive counseling are less likely to receive invasive treatments at the end-of-life. The legislation also authorizes a demonstration to offer concurrent hospice and palliative care for individuals with multiple, complex chronic disease and two or more limitations in activities of daily living.

For caregivers of loved ones who are terminally ill, hospice can play a very critical role. So, policy support matters. And who better to seek that from lawmakers than those who work hand-in-hand with patients and their family caregivers?

I look forward to finding out how well Congress listened.

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J. Dietrich Stroeh is author of Three Months: A Caregiving Journey from Heartbreak to Healing (FolkHeart Press) and two free e-books. For more information, click here.