The Role of Individual Advocacy in State Efforts to Promote Palliative Care

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!

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