In 2014, the Hospice and Palliative Care Association of New York State and the American Cancer Society Cancer Action Network began meeting to discuss our shared concerns about the quality of care for those with life limiting illnesses. As a result of those meetings, the New York State Palliative Care Collaborative was formed to promote, educate and advocate the importance of better integrating palliative care into a patient-centered health care system. To kickoff public efforts for the collaborative, Collaborative founders hosted a webinar to discuss the essential components of palliative care and detail some action steps which are being proposed to better coordinate advocacy to promote the integration of palliative care. The webinar objectives were:
- To convene an engaged collaborative where entities take on active role.
- To introduce the mission and platform of the collaborative to new and potential members
- To discuss the definition of palliative care and how it is operationalized in NY State
- To discuss how collaborative partners can engage their constituents and organizations in their community
The mission of the Collaborative is to “foster individual, family, and community support for education about access to quality palliative care for all New Yorkers upon diagnosis of a chronic, progressive, or life-limiting illness.”
In March, 2014 Collaborative Founders sent out a letter of invitation to join the Collaborative to 72 organizations statewide. If you or your organization are interested in joining this grassroots effort. Interested organizations can download the letter and submission form here.
This is a list of the organizations who have formally joined the Collaborative as of January, 2016. As Membership in the Collaborative continues to grow the list will be updated as new organizations and individuals join the effort.
The Collaborative will be developing a ‘Palliative Care Story Bank.’ Individuals and organizations across the state are invited to submit their Palliative Care stories. These stories will serve as the cornerstone of local sustainability work. They are a very powerful advocacy tool with legislators and are crucial for generating media coverage on the issue. We have developed this ‘Story Template’ to help outline and document the story. Use the link above to access the template.
Collaborative Members are asked to:
- Identify and communicate real life stories of individuals who have benefited from palliative care and can relate how it improved their care or that of a loved one
- Work with your constituents to develop case studies that demonstrate the benefit of palliative care from a personal, family story perspective.
- Invite members of your organization to share stories concerning the challenges of managing chronic illness with care as it is usually offered, for use for legislative action and possible newspaper article or op-ed
Institute of Medicine (IOM) Report ‘Dying in America’
In September 2014, the IOM released a consensus report “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,” which found that neither individuals nor the health-care system are at all ready for the inevitable