End of Life Equity
Who We Are
End of Life Choices New York is a non-profit organization with a mission to expand end of life options, improve end of life care, and promote healthcare equity at the end of life. Our goal is for all New Yorkers to have a peaceful death and receive end of life care in alignment with their wishes and values.
We advance our mission through three approaches:
- Providing free counseling and support to individuals and families planning for the end of life, caring for someone at the end of life, or who are navigating the end of life themselves
- Advocating for expanded end of life options and the enforcement of patient rights
- Educating the public and health care professionals on end of life planning, options, and care
For more than two decades, End of Life Choices New York (EOLCNY) has worked to achieve better care and more choices for the dying through advocacy and education and free counseling for patients and their families. We are committed to fighting for the right of terminally ill New Yorkers to control the circumstances and timing of their deaths. Our goal is to promote quality health care, health care choices, and human rights, autonomy, justice and the relief of suffering.
Need for End of Life Equity Work
Our country is in the midst of a careful interrogation of the way personal biases and systemic inequalities actively threaten lives, and end of life care is far from exempt. There are numerous disparities in end of life care evident in both patient preparedness prior to illness and their actual experience of dying. The pandemic and recent acts of violence demonstrate that a person’s circumstances of death often depend, unfortunately, on how they look, who they love, and where they live. New York has the lowest rate of hospice utilization in the country, and only approximately 30% of adults have directives in place to ensure their healthcare wishes would be known if they become too ill to communicate their own wishes. This means that New Yorkers are disproportionately likely to suffer at the end of life compared to other states.
Furthermore, minoritized New Yorkers who are more likely to suffer. At the end of life, when individuals are often at their most vulnerable, discrimination takes several forms including poor pain management, inadequate communication between healthcare providers and families, and medical interventions without informed consent. The data is damning. People of color are less likely to have appointed a health care agent or to have had conversations about their end of life wishes. Black Americans are 75% less and Hispanic Americans 70% less likely to have completed an advance directive—and these inequalities persist even when adjusting for other factors such as education. A study found that only approximately 10% of LGBT people discuss advance care planning with the primary care provider. Even within communities, there are further disparities; for example, transgender people are 50-70% less likely than their LGBQ+ counterparts to have advance directives. According to the Center to Advance Palliative Care, “Ninety percent of hospitals with palliative care are in urban areas. Only 17% of rural hospitals with fifth or more beds report palliative care programs.” Doctors are also less likely to provide adequate pain management to their patients of color. When experiencing pain at the same severity levels, Black, Latinx, and Asian American patients are more likely to be prescribed weaker pain treatment medications. Black patients have lower rates of hospice enrollment and spend more time in the ICU while receiving more aggressive care. Even when Black patients have DNR orders in place, they are more likely to receive life-prolonging treatments such as mechanical ventilation anyways, meaning that their end of life wishes are not being respected.
It is every patient’s right to determine their own end of life care, and it is true that different communities have different ways of handling death and grief that may also affect their end of life choices. But studies reveal that patients’ core wishes tend to be universal. At the end of life, we would all like to avoid pain, maintain dignity, be with loved ones, and have our individual wishes and beliefs honored. “Culture” is not an excuse for a lower standard of end of life care. Understanding and respecting culture is a key aspect of the work to ensure that everyone can have the same knowledge and trust, so that they can make the best-educated decisions for themselves. It is essential to address misconceptions about the nature of end of life care and serious illness to increase the utilization of services such as hospice, palliative care, and other legal options to hasten one’s death. Community-driven programs are critical, but there is currently no unified and organized effort in New York to do this work.
What We’re Doing
End of Life Choices New York is partnering with other organizations and community groups to develop community-led programs and resources, and to recommend policy changes when needed. As part of this effort, EOLCNY has been conducting research and holding focus groups with Black New Yorkers. For more information about these research efforts please click here, and check our our special reports here.
In addition, over the next year, we will be launching a formal institute to further explore and address these issues, that will:
- Offer a pipeline for students and early career professionals, especially those from underrepresented communities, to engage in work to promote healthcare equity through internships and fellowships
- Conduct community-based participatory research on the end of life needs and experiences of communities often overlooked
- Develop and implement outreach and educational initiatives, resources, and programs to empower New Yorkers and train healthcare providers and service professionals to become end of life care advocates.
- Partner with other organizations and groups promoting social justice.
Partnership and collaboration is critical to advance equity. Interested in joining us? Please send an email to email@example.com to discuss ways to collaborate.