It’s All About Getting the Care You Want

Edo Banach, JD, President and CEO of NHPCO, shares his thoughts about the importance of Advance Care Planning: 

To twist a familiar expression attributed to Benjamin Franklin: “In this world nothing can be said to be certain, except ‘life’ and taxes.” I only wish people would put as much effort into planning for their future healthcare needs as they do on their annual tax returns. As we near tax day, I hope that we can all pause to consider or re-consider our health care wishes.

Advance care planning is not about the end…it’s about having heart to heart conversations with our loved ones, talking about our values, priorities and wishes. It’s about documenting those wishes in an advance directive and sharing that with friends, family and healthcare providers so that we will get the care we want should we not be able to speak for ourselves. It’s about giving a gift to our loved ones who will know what’s important to us long before we ever face a serious illness or medical emergency.

All forms of advance directives – which can include a living will, healthcare proxy or health care power of attorney, or even a POLST or MOLST form from our physician – are tools one can use to make healthcare preferences known and help ensure we get the care we want.

These conversations and an advance directive do not have to be done in a lawyer’s office, but can take place around the kitchen table or in the family room, during calm times, not in the midst of a healthcare crisis. A recent bipartisan report from The Aspen Institute Health Strategy Group, “Improving Care at the End of Life,” offers five big ideas to improve care during this challenging time and will help take away some of the fear about having these important conversations. I support the five ideas, particularly the concept of “building the development and updating of an advance care plan into the fabric of life.” This includes the integration of advance directives and planning tools into smart phones, and utilizing employee on-boarding and insurance sign-up periods to provide advance planning tools and allow individuals to execute an advance directive.

I would like these conversations to be part of a person’s annual physical or a natural step when applying for insurance or starting a new job. Even a birthday or annual event like Thanksgiving can be a time to talk and make these conversations part of our family routine. And, yes, even the tax season can be a good time to have conversations about our health care wishes.
Like taxes, these conversations can be difficult to begin but once we have, we’ve already gotten over the biggest hurdle.

National Hospice and Palliative Care Organization offers a range of materials to help people understand advance care planning and begin the discussion, all available free of charge at This includes state-specific advance directive forms.

Cabernet over Chemo: Lessons from four doctors

Check out this great article over at California Health Report.

“Medicine is not a science,” said Dr. Eric Cassell to a packed room at the annual Coalition for Compassionate Care of California conference in Sacramento last week. “Clinical medicine, the care of the sick, takes place between the doctor and patient in an almost magical, interpersonal relationship.”

Dr. B.J. Miller of UCSF Medical Center spoke at the Coalition for Compassionate Care of California conference about how palliative care can go deeper. Photo: Owen Egan


What follows is four unique perspectives from four doctors immersed in palliative and end-of-life care. It also includes several links to additional resources. Well worth a read!

Trump’s Budget and the Hospice Community

HAN is happy to be hosting Dr. Noam Stern, a Fellow in Pediatric Palliative Care at Akron Children’s Hospital in Akron, Ohio. During his time with us, Dr. Stern will be learning about the intersection of clinical practice and policy-making, with an eye towards improving advocacy for pediatric palliative care. As a part of his experience, he will be writing the occasional guest blog post:

President Trump released his budget proposal on Thursday and there have been lots of reports in the media of drastic changes to government programs, so let’s take a look at what this proposal would mean to us.

Importantly this proposal is only regarding discretionary spending, meaning that mandatory spending including Medicare, Medicaid, and Social Security are not addressed in this budget.  This is also a “skinny budget” of 62 pages so many details still remain to be seen, but here is what we do know.

There are two relevant increases for the health care community. The first is an increase of $4.4 billion dollars to Veteran Affairs which would increase their budget by 5.9% and could improve the services our patients receive. Second is a $500 million increase to opioid abuse prevention and treatment, an area very relevant to our practice. Beyond those increases which will affect us directly, big ticket items that would need to be balanced out with cuts include an increase of $54 billion (10%) to the department of defense, $2.6 billion to start work on boarder wall, and $1.4 billion for school choice programs.

So how would this all be paid for? In dollars the biggest cuts come to the Department of Health and Human Services,  which would lose $15.1 billion or 17.9%. A large part of this would come from the National institutes of Health (NIH) which provides for medical research funding. Also cut are $403 million to health professions and nursing training programs. The Community Development Block Grant program which provides Meals on Wheels would lose all $3 Billion of federal funding, although much of that program’s funding is from other sources.

While the President’s budget is an important part of the process, it is important to note that it is only the first step.  Congress will either adopt these recommendations or reject them as it moves through the annual budgeting and appropriations cycle.  Many Members of Congress, including some Republicans, have declared the budget “dead on arrival.”  So this is not the final word on federal spending, to be sure.

And as noted earlier, this budget does not affect the Medicare Hospice benefit, payment rates, or anything of the like – that is something that would need to be addressed separately.  If anything happens on that front, we’ll be sure to let you know.


Kaweah Delta Hospice hosts Congressional Staff

Mr. Rudy Mendoza (center) meets with Dena Cochran (Left) and Susan Buscaglia (right) of Kaweah Delta Hospice.

Mr. Rudy Mendoza from Congressman Devin Nunes’s office met with Susan Buscaglia, MSN, RN, CHPN, Director of Hospice Services, and Dena Cochran, VP of Development for Kaweah Delta Health Care District at the Kaweah Delta Hospice in Visalia, California. 

Susan used the template Introduction Letter to connect with Rep. Nunes’s office, and was able to get a meeting with a staffer right away! She reports that Mr. Mendoza was engaged and interested, particularly in learning more about the We Honor Veterans program, as well as the Rural Access to Hospice Act. 

 “Even though I was a bit hesitant to send the Introduction Letter, I did it because I am always looking for opportunities to talk about hospice and advocate for our services.” says Susan.  “I was very pleasantly surprised and gratified to have such a quick response from Mr. Mendoza.  It was a great experience”

Thank you to Kaweah Delta Hospice, and to Mr. Rudy Mendoza for taking the time to learn more about hospice!

Do you want to be featured on our blog? You can learn about inviting a Member of Congress to your program or requesting a meeting in our Advocacy Toolkit. Then, make sure you tell us about the meeting, and snap some pictures! For more information, feel free to email me!

Latest Policy Podcast

NHPCO’s Health Policy Team members, Jon Keyserling and Sharon Scribner Pearce, share their key takeaways from President Donald Trump’s first Joint Address to Congress. Learn more about what has been unfolding on the Hill, how it could impact the hospice community, and free resources that can help you become a better advocate for hospice.

Quick Links to Resources Mentioned in this Podcast