Hospice patients on Medicare would have greater access to advance care planning and end-of-life discussions with their care teams under proposed legislation. Care Dimensions staff members and more than 200 hospice supporters from across the U.S. championed the bills this week during the Hospice Action Network’s two-day “advocacy intensive” meeting in Washington, D.C.
After a full day of preparatory meetings and workshops, hospice advocates met with legislative aides to U.S. senators and representatives to educate them about hospice and urge support of the Care Planning Act (S.1549) and the Personalize Your Care Act of 2016 (HR 5555). The bills increase accessibility to and public awareness of advance care planning, which will help patients and families better navigate the end-of-life journey with the information and support they need.
“A few people we met with had some limited experience with or knowledge of hospice,” said Sarah Shepard, LICSW, Care Dimensions manager of psycho-social support services. “Our meetings provided a good opportunity to inform congressional aides how hospice helps people through their end-of-life chapter, and how legislators can help make that journey a dignified one.”
In the Senate, Shepard and two representatives of other Massachusetts-based hospices met with Meghan McCafferty, legislative correspondent for U.S. Sen. Elizabeth Warren (D-MA). Nate Lamkin, LICSW, ACHP-SW, senior director of patient and family services, and other Bay State hospice advocates met with Alex Jones, legislative correspondent for U.S. Sen. Edward Markey (D-MA). They stressed the Senate bill’s provision that creates a Medicare Planning Services benefit for those with serious or life-threatening illness. The benefit would include a team-based discussion of values, care goals, disease progression, treatment options, and a documented plan that reflects the individual’s preferences. Lamkin drew a parallel between preparing for life and preparing for death.
“People who are about to become parents for the first time have many planning discussions with their obstetrics team,” said Lamkin. “Where do you want to have the baby? Who do you want with you? What do you want this (birthing process) to look like? At the other end of life, you have a process that can be frightening, patients who are fragile and dependent on other people, and we’re still asking the same type of questions: Where do you want to be when you die? Who do you want with you? What’s important to you?
“The big difference,” Lamkin continued, “is that while provider teams are reimbursed to talk to people about how to prepare for a birth, they are not paid to have the type of discussions that people need to plan their end-of-life journey. During the limited time of an office visit, they tend to focus on the medical conditions and procedures that are reimbursed, rather than open-ended discussions about the patient’s end-of-life wishes that aren’t reimbursed. We’re urging senators to fix that.”
In the House, hospice advocates pushed for the Personalize Your Care Act, which includes provisions that:
- Provide advance care planning and palliative care education and training for clinicians who care for people with advanced serious illness
- Allow advance directives to be portable across state lines
- Require that current advance directives can be included within a patient’s electronic health record
Lamkin and Shepard met with Margo Brown, legislative assistant to U.S. Rep. Seth Moulton (D-MA), in whose district Care Dimensions and the Kaplan Family Hospice House are based. Individually, they also met with assistants to other members of the Massachusetts congressional delegation: U.S. Reps. Katherine Clark and Joseph P. Kennedy, III.
Although the meetings in Washington are over, you can still make a difference. Share your support for hospice with your representative or senator by participating in the Hospice Action Network’s Virtual Hill Day.
To learn about advance directives in Massachusetts, see our Planning Ahead page.