Last year, the Hospice and Palliative Care Association of New York State (HPCANYS), the Coalition to Transform Advanced Care (C-TAC), C-TAC Innovations, and TFA Analytics announced their collaboration on a project to develop a comprehensive set of policy recommendations to expand access to palliative care services for adults, children, and their caregivers throughout New York State. This initiative is funded through grants from The Fan Fox and Leslie R. Samuels Foundation, the Ralph C Wilson, Jr. Foundation, and the Mother Cabrini Health Foundation.
The aim of this initiative is closely aligned with the New York State Department of Health (NYSDOH) and New York State Office for the Aging (NYSOFA) State Master Plan for Aging (MPA) and with the activities of the National Academy for State Health Policy (NASHP) Serious Illness Institute. The MPA Long Term Care Services Subcommittee Workgroup identified issues of hospice and palliative care access and quality as requiring a special focus. As a result, the Workgroup on End-Of Life Care was created and highlighted palliative care as a priority service in need of expansion, oversight, and accountability to assure health equity and equal access to care.
The state also sees a need to systemically address issues of access, service variability, oversight, and funding. To date, there is no Medicaid reimbursement (and limited Medicare reimbursement) for adult palliative care, no licensing requiring DOH oversight, and a plethora of unmonitored payor initiated and private vendor palliative care providers. Ultimately, the absence of standardization in palliative care services leads to patient confusion, fragmented care, and poor outcomes.
To achieve these goals and address these issues, the joint initiative is convening and engaging a multi-sector group of stakeholders, including patients and caregivers, to develop policy recommendations for palliative care and collecting the feedback necessary to expand access to palliative care services for people with serious illness. Data analytics will be used to inform these recommendations and will also involve collaboration with members of the Department of Health and Office of Medicaid.
On May 22, the Palliative Care Symposium, hosted by HPCANYS, was held and marked the beginning of the stakeholder feedback collection process. The Symposium was attended by over 60 attendees representing a diverse group of stakeholders including hospitals, hospices, palliative care providers, health plans, healthcare associations, health equity organizations, aging and youth services, home care providers, long term care services, healthcare policy, and the NYS Department of Health.
The event kicked off with a welcome from HPCANYS and a word from both The Fan Fox and Leslie R. Samuels Foundationand the New York State Department of Health voicing support for the initiative and why it is important work for the state. Dr. R. Sean Morrison, Ellen and Howard C. Katz Professor and Chair, Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, then discussed the state of palliative care in New York regarding patient needs vs. available services and providers, and shared impactful patient stories highlighting the need for these services. Jeanne Chirico, CEO of HPCANYS further spoke about the gap in care and how the time is right for stakeholders to come together to bridge the gap.
Torrie Fields, CEO of TFA Analytics (TFA), and C-TAC Strategic Advisor, presented the draft policy recommendations to the group to collect questions and comments. The recommendations were previously presented to the initiative’s multi-stakeholder Advisory Council for initial feedback. The recommendations are comprehensive, consider both adults and children, and cover a wide range of areas such as eligibility criteria, covered services, provider qualifications, reimbursement structure, outcomes and performance measures, and the anticipated impact on care. To gain more in-depth feedback, breakout groups for each of these sections were held as well. TFA also reviewed the development process for the draft policy recommendations, including expected outcomes for the work, the development timeline, and existing policies, guidance, laws, and definitions that informed the recommendations.
Following the Symposium, stakeholder feedback was positive and great insights were gained that will inform the policy recommendations moving forward; however, this is just the start of the stakeholder feedback collection process for this effort.
HPCANYS, C-TAC, C-TAC Innovations, and TFA Analytics, along with the Advisory Council, will continue to work with stakeholders through ongoing focus groups and surveys to ensure the collection of broad input from across the state. This feedback, combined with quantitative data on provider and patient location, capacity, and cost, will lead to a set of policy recommendations that can be submitted to CMS, and if approved, will make an enormous positive impact on the lives of those living with serious illness and their caregivers. They plan to present these recommendations to NY DOH leadership in fall 2024.
