In the lead up to the Advocacy Intensive, it is important for our advocates (both at home and in DC) to think about their hospice stories. Did you have a patient who would have benefited from having something like the Care Planning Act? Did you know a family that was able to have a beautiful end-of-life experience because their loved one had a clearly established plan? Think about your experiences in the context of this proposed Care Planning Act, and be ready to tell these stories to your Members of Congress, both in person and via our Virtual Hill Day.
Former Senator and heart surgeon Bill Frist published a column in Forbes Magazine yesterday voicing his support for the Care Planning Act, among other initiatives. He makes an important point when he says, “Americans are living longer than ever, and children are increasingly helping aging parents and grandparents manage multiple chronic conditions.”
I am not even thirty-years old, and I know several other people my age who have already had end-of-life conversations with grandparents, parents, and even siblings. However, end-of-life care is not something people my age typically think about, so when we are placed in the caregiver role, we have often never had a conversation about our own wishes, much less the wishes of the person now under our care. Many of us have little to no experience with navigating the healthcare system. It can be a scary, divisive, and lonely time.
But imagine this as a part of standard care: an interdisciplinary team of doctors, nurses, social workers, and others are there to help guide us through this difficult time. We don’t have to spend hours on the phone calling around trying to get questions answered. We don’t have to guess about options or our loved-ones wishes. We don’t have to agonize over making the wrong decision. We have one team, informing and guiding both the caregiver and the patient through making their end-of-life plan.
The Care Planning Act does this. It establishes reimbursement through Medicare for healthcare professionals to provide a voluntary and structured discussion about the goals and treatment options for individuals with serious illness. It facilitates information-sharing and decision-making to ensure that the patient’s wishes are known, and that the caregiver is informed and empowered to carry them out. This is patient-centered care at its heart. And I know for me, as someone whose most serious personal experience with healthcare is limited to getting her wisdom teeth removed, having a team on my side guiding me through this difficult time would be invaluable.
So I know many people my age do not think about death, dying, end-of-life care, or hospice on a regular basis. But that is precisely why we need the Care Planning Act. We need information and support in this difficult time, if not yet for ourselves (though perhaps one day), then for the people in our lives who may someday suffer from advanced illness.
In the past 36 hours, we’ve logged a solid 50 more registrations for the Advocacy Intensive. We are currently at 238 attendees! That’s nuts! We are going to hit our cap of 250 to be sure (which makes boss-man Tony happy). Just to break it down:
We have someone from 47 out of 50 States! Know any caregivers from Alaska, Mississippi, or New Mexico? Send ’em our way!
We have CNAs, RNs, LPNs, MSWs, Chaplains, Bereavement Counselors, Volunteers, Admins, Resident Managers, Care Coordinators….any title you can think of, we’ve got at least one!
LOTS of first-timers too! We can’t wait to meet you!
California is currently leading with the largest delegation, but New York and Virginia are putting in a strong showing as well!
These were our badge supplies…I think we’re going to need a bigger boat…or I mean, container!
Definitely not going to be enough….
Don’t forget, registration CLOSES ON FRIDAY! Feel free to reach out to me at email@example.com with any questions! Tweet us @HospiceAction with what you are excited about learning at the Intensive, and I’ll enter you into our Monuments Tour Drawing! Just use #HAN15 in your Tweet!