Advocacy
The Role of Individual Advocacy in State Efforts to Promote Palliative Care
Apr 23rd
by Amjad Riar, MD
Nearly a decade ago, during my training as a third-year medical resident, one of my rotations in oncology was at Johns Hopkins. One of the responsibilities was to admit patients with advanced cancers, and I saw oncological emergencies for seriously ill cancer patients. This ignited the thought in my mind that — even in this state-of-the-art, world-class hospital providing excellent, disease-focused medical care — we are missing something relating to patient and family needs. Soon after my training was over, I began practicing as an internist but kept on exploring until I found the answer to my question, and that was a palliative care fellowship. I was excited that the answer meant patients in need would benefit from good pain control, effective symptom management, and an approach driven by their goals of care. But I realized that it is more complicated than I thought, when I found myself explaining to patients — and most commonly to other physicians — that palliative care is not about dying and is not only hospice, but is focused on all the things that can come before hospice. There wasn’t — and still is not — a single day in my practice that I don’t find myself explaining and trying to educate other docs about palliative care.
I have seen myself struggling with patients in so much pain and suffering from various symptoms in hospitals, and yet the attending physician is not interested in a palliative care consultation due to a lack of understanding about the focus and expertise of palliative care teams. This motivated me further. In hoping that one day I would see palliative care available to all patients and families and more education made available for all the stakeholders in health care, I realized the need for public policy advocacy and thought to approach the legislators in my home state of Maryland. I started calling their offices and writing letters with facts about palliative care … how it can lower health care spending while improving quality of life as well as quality of care. For two years, I tried to make the case to a few lawmakers. Most of them quickly concluded the conversation by saying that we already have hospice-related legislation, and they didn’t think a palliative care bill would get through that easily. Eventually, my persistence paid off, and I was able get through to one lawmaker who agreed to consider introducing a bill to mandate palliative care services in hospitals statewide. By this time New York’s palliative care legislation was already in place, so I had more real scenario to present.
The problem that I really wanted to address through legislation was patient and family access in acute care settings, along with provider — and general public — education. This required me to learn many new tactics and skills on how to lobby effectively. I had no idea how the legislative process works. I was asked by our state delegate to review the bill he drafted. After many meetings and fine tuning the language, we had crafted a measure we thought would be effective yet not controversial. It was ready for presentation to the House committee.
Now the real work started. This taught me even more, including an appreciation for how hard it can be to achieve something so right in your heart and mind but which may not make much sense to others. I called the office of each member of the committee and asked for an appointment, eventually meeting with all 23 delegates one on one. My goal was to educate each and every member of the committee in person before the bill came up for a hearing, to explain why this bill is needed and how the subject matter is different from what they may think. I created a “one pager” speaking to the issue and need. The bill could only move forward if there was a favorable report from the committee.
This certainly was a strenuous learning process. While the committee members came to have a good understanding of what the palliative care legislation was intended to achieve, we hit a stumbling block when a few members decided to postpone consideration of the bill. But, with continued advocacy and support from other organizations, the committee chair decided to create a workgroup to further discuss the measure. We met on regular basis and, eventually, my advocacy efforts all paid off: in this year’s session, a palliative care bill was passed in both the Maryland House and Senate. It is awaiting the governor’s signature.
The bill requires the establishment of at least five palliative care pilot programs in hospitals with at least 50 beds across the state. The programs are required to collaborate with palliative care or community providers to deliver care; to gather data on costs and savings to hospitals and providers, access to care, and patient choice; and to report to the Maryland Health Care Commission on best practices.
Of course, this is just a first step on the road in right direction… but at least we are on the road! Next steps are really focused on continued education and involvement of stakeholders. I am focused on building coalitions, continuing collaborations, and expanding palliative care services in long-term care and non-acute settings. I will keep you posted!
In the meantime, my message is this: One palliative care provider can make a difference!!
We know the number of patients with serious illnesses is only increasing. In today’s highly specialized and fragmented health care system, these patients walk a fine line from being the beneficiary of modern medicine to becoming its victim. Informed decision making, along with early involvement of palliative care, can potentially help these patients and their families to avoid the latter. Consider advocating for palliative care in your state. Get active in promoting better health care for our future generations. I will be very happy to share more about my experience so you don’t have to go through unnecessary steps that I may have. And if you decide to take action, you might just uncover personal stories where palliative care has impacted the lives of key policymakers and, in doing so, find a champion for your cause. The hard part is first taking the initiative. Once you do, however, remain persistent! You will be surprised to learn that persistence will pave the way to success. If you believe in something right, just go for it — and keep marching until you reach your destination!
Hospice and Palliative Medicine Commit to ‘Choosing Wisely’
Mar 21st
by Larry Beresford
On February 21 AAHPM, on behalf of its members and the specialty of hospice and palliative medicine, joined with 15 other medical societies to introduce Round Two of Choosing Wisely, a major national health care quality initiative sponsored by the ABIM Foundation. In a health care system undergoing rapid reforms, serious turmoil and escalating demands to raise quality and reduce costs, palliative care is often offered as a solution for providing appropriate care more in line with patients’ and families’ goals, with fewer unwanted and unhelpful treatments and, frequently, lower overall costs. But increasingly, HPM will be asked to show the evidence for the quality and efficiency of its own services, just like other sectors of health care.
The Choosing Wisely campaign challenges participating medical societies to name five treatments that are frequently performed but often unsupported by the medical evidence—and to share this list with their members and the public. AAHPM accepted that challenge, and took its place at the podium on February 21 with other societies concerned about their place in the health care value equation. The latest issue of AAHPM’s Quarterly newsletter describes how the academy developed its list, who participated in that work, and how academy members can join in the campaign in their own communities and facilities.
Now we’d like to hear from you. What do you think of the Academy’s Choosing Wisely list? Are there other treatments of questionable value that you think are equally deserving of quality improvement interventions to target unnecessary utilization? What is being done in your work setting to promote the goals and values of the Choosing Wisely campaign?
Larry Beresford is a freelance medical writer from Oakland, CA, who specializes in hospice and palliative care issues.
POTENTIAL ENERGY. ACTIVATION. KINETIC ENERGY.
Mar 14th
Some time ago, my AAHPM teammate (and social media maven) Jennifer Bose asked me if I’d write a blog post on my experience at the Assembly today. I’d be lying if said I was anything less than brimming with excitement about the prospect. You see, this is my second Assembly as a member of the AAHPM staff, and my first came just about a week after I was officially hired last year. Because I was brand new, I was able to experience Denver as an attendee might. I was given cart blanche and attended whatever session or meeting I desired. I saw everything. I met everyone. It was staggering and remarkably educational.
It was also decidedly different than my experience this year.
This year, I have been static, essentially posting up permanently at the Resource Center Advocacy Kiosk (you should check it out!). And, if I’m going to be honest, I have to say that I was a little worried about how my perception of this year’s Assembly might stack up after the exhilaration of last year’s. And if I’m going to be even more honest, I was really, really worried about identifying something interesting to put in a blog post. On its face, my activity at the Assembly thus far has really just amounted to sitting on a stool, behind a desk.
Fortunately, I was reminded today why the phrase “on its face” exists. It is a nod to the simple, yet essential truth that life must be lived to be understood, a warning against prejudgment. I was shown again that this Academy and the members who volunteer their time are, fundamentally, deeply dedicated to the field. I was shown again that I am lucky to work for such a special group of people, that hospice and palliative medicine practitioners are not like other providers.
Where policy and advocacy conversations at other specialties’ annual meetings may focus on increasing reimbursement or protecting turf, HPM practitioners seem to have one, core consideration in the issues they hold dear – the quality of care and life for patients and families facing serious illness. Almost every conversation I had with Assembly attendees today focused on what can be done to increase access to hospice and palliative medicine, to assess and improve the quality of care, to express to health policymakers and health system administrators how hospice and palliative medicine is systemically beneficial, and to increase the HPM workforce. Unsurprisingly, the focus was always outward, always on the needs of others.
I feel sometimes that a part of my job is to fret. The scope of policy activity at the state and federal level is daunting, and the list of areas in which I feel a responsibility to help AAHPM members make an impact seems to grow exponentially. Maybe this is a natural feeling in the information age, with its unsettling ability to turn unknown unknowns into (the far more frightening) known unknowns, but it’s unpleasant nonetheless.
Fortunately, though, I have an antidote – action. I always feel better when we are advancing the ball on an issue. I love listening in on a Public Policy Committee call or helping a member draft a letter or developing a project outline. I love it. It is the only way to turn those known unknowns into known knowns, and working with known knowns is really the only way to get your hands around an undertaking as vast as the one facing hospice and palliative medicine.
And that’s what I saw today – I saw the genesis of that action. I saw people who have been involved in advocacy for years, people who are just beginning and filled with all the zeal you’d expect, and I saw people who are primed and already planning how they are going to step up and advocate for their field. So, even though I was static pretty much all day, I was in the middle of a huge amount of activity. It was a cycle of sorts – Potential energy. Activation. Kinetic energy.
Patrick Hermes
Manager, Health Policy & Advocacy
Choosing Wisely in Hospice and Palliative Medicine
Feb 26th
Has this happened to you? Your elderly patient can’t sleep their last night in the hospital before being discharged home with hospice care so the on-call physician orders a sedative-hypnotic. When the patient becomes confused and agitated, a CT scan of the head is ordered. Or how about this one: Your patient with stage IV non-small cell lung cancer is referred for screening colonoscopy. I’m sure you have your own stories. Experts estimate that one third of US healthcare spending, over $700 billion annually, is for care that is non-beneficial or even harmful.
Seeing treatments and tests reflexively ordered when the potential for benefit is low or the risk of harm is high, particularly for the elderly and people living with serious illness, was a major source of distress to me as a resident. That distress, and a belief that evidence-based medicine could guide us to care that is more effective, accessible, compassionate, and sustainable, lead me to a career in palliative medicine. It is precisely this hope that underlies the American Board of Internal Medicine Foundation’s Choosing Wisely® campaign.
The goal of Choosing Wisely is to challenge medical specialties to come up with their “top five” list of treatments, tests, or procedures that should be questioned because best evidence shows they are non-beneficial or even harmful. As a recovering molecular biologist, I confess, I devoutly believe that science that informs our compassionate care is the best way forward. All this is by way of explanation for the madness that overtook me when I agreed to serve as Chair of the AAHPM Choosing Wisely Task Force.
The challenge was significant. We had a relatively short timeline to build expert consensus on our list of “Five Things Physicians and Patients Should Question” in Hospice and Palliative Medicine. Striving for an inclusive and transparent process, we also wished to incorporate member feedback into the list development process. Fortunately, I was blessed with a wonderfully talented group of Task Force members.
To start the process we elicited suggestions for the list from the AAHPM SIGs as well as Task Force members. We used these to develop a short list of recommendations and then sought feedback from Academy members. We received close to 700 comments from more than 300 members ―vital input that informed the Task Force’s final selection of AAHPM’s recommendations and drafting of the precise supporting language for each item on the list. Finally, last Thursday, our recommendations were revealed – along with those of sixteen other medical specialties – during a press event in Washington, DC. (Visit choosingwisely.org to access the complete lists from all participating specialty societies and watch a video of the Feb. 21 announcement and panel discussion.) Each society, traditional and social media, along with Consumer Reports, Wikipedia, AARP, NHPCO and other consumer advocates are all contributing to the broad dissemination of the campaign.
With the final list announced, the real work now begins: supporting critical conversations between physicians and their patients as they collaborate to ensure the best care possible. To support those conversations, AAHPM has developed a set of talking points for members (login to Members Only required). Our AAHPM Choosing Wisely Task Force has also written a Special Article describing our “Five Things” in greater detail. Look for it in the March issue of The Journal of Pain & Symptom Management.
I’d also like to invite you to attend the Advocacy Forum at the AAHPM & HPNA Annual Assembly in New Orleans next month where my fellow Task Force members and I will discuss our Choosing Wisely recommendations and how you might choose to discuss them with your patients and the public. (Learn more.)
I’d love to hear your thoughts about AAHPM’s Choosing Wisely recommendations. What do you think of the list? Will you use it in the care of your patients? If so, how? What other recommendations would you like to see on any future lists?
Whether or not your “Five Things” list would be identical to AAHPM’s final version, I hope you find it a useful tool to engage patients, families, and the public in choosing wisely.
Daniel Fischberg, MD, PhD
Medical Director, Pain & Palliative Care Department, The Queen’s Medical Center
Chief, Division of Palliative Medicine, and Professor, Department of Geriatric Medicine, John A. Burns School of Medicine of the University of Hawaii
Honolulu, HI
It is time for you to act! Help expand the palliative care workforce.
Jul 20th
Yesterday, July 19, AAHPM’s efforts in crafting legislation aimed at expanding opportunities for interdisciplinary education and training in palliative care came to fruition when the Palliative Care and Hospice Education and Training Act (PCHETA) was introduced in the United States Congress. The bill was introduced as S.3407 by Sen. Ron Wyden (D-OR) and as H.R.6155 by Representative Eliot Engel (D-NY17). (Read a summary of the bill.)
Here I am meeting with Missouri Sen. Roy Blunt on July 17. I was one of 21 Academy physicians to take part in AAHPM’s Capitol Hill Days on July 16-18. We met with our representatives in Congress and their staff to help them learn more about palliative care and hospice and to encourage their support of the PCHETA bill.What do you need to do?
Contact your representatives in Congress and ask them to support the bill. Better yet, ask them to sign on as a cosponsor of the legislation. You can help ensure this legislation has the positive momentum that is so critical to moving it forward.
Contacting your elected officials is easy using AAHPM’s Legislative Action Center.
Got Concerns?
Here are the TOP 5 Myths about policy advocacy debunked-
- Myth: I’m Too Busy: This is important. Imagine how busy you will be in a few years with more patients needing palliative care but no increase in the workforce. Take the time.
- Myth: It will take too long: The Academy has set up a quick and easy-to-use interface to reach your legislators. Have plenty of time? Great, personalize your response. But even if no time, you can do this in just a couple of minutes. Do it now.
- Myth: My voice doesn’t matter: It does. You are a constituent. Hearing your voice is key. Take the time
- Myth: I’m from the wrong political party: This is not a partisan issue. The needs of our patients transcend party. Tell the story of helping patients. This can be done.
- Myth: The timing of the bill is wrong: In truth, moving from a bill to law is going to take time. It will not happen overnight. But it has to start. And you taking the time to develop a relationship with your elected officials and their staff will help speed the process along.
Got More Concerns?
Then getting involved with advocacy may be right up you alley. Contact Patrick Hermes, AAHPM Manager of Health Policy & Advocacy.And the next time you see the AAHPM staff, thank them for their hard work on this.
Paul Tatum, MD FAAHPM
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