Disparities in Serious Illness Care

New Jersey is the worst state to die in. The Dartmouth Atlas Project revealed that EOL care in NJ is both quantitatively and qualitatively different than that provided to patients in other states. In NJ, patients near the EOL receive more aggressive medical care than those in any other state, at a cost 20% above the national average and often, that high-intensity care is unwanted and burdensome to patients and their families. While there has been some improvement in the last few years, NJ continues to score far below the US average on several EOL care metrics and ranks the worst in the country on important measures including total Medicare spending, days spent in the hospital, and days spent in the ICU, in the last 2 years of life.

Further complicating matters are the facts regarding health disparities in EOL care among minority populations. NJ has the third most diverse patient population of any state in the US. Regrettably, patients from NIH-designated US health disparity populations including Blacks/African Americans, Hispanics/Latinos, Asian Americans, the socioeconomically disadvantaged, and sexual and gender minorities are often diagnosed with late-stage illness and have worse outcomes, leading to consistently higher mortality rates and greater suffering at the end-of-life.

Language barriers and cultural differences negatively impact the care they receive including access to information about palliative and hospice care services. As a result, too many of NJ’s minority patients suffer, experiencing unnecessary or unwanted hospitalizations at the end of life. These disparities have been further amplified during COVID-19 as disproportionate numbers of minorities are infected and are dying as a result of the virus.

Successful end-of-life care requires trusting relationships between healthcare professionals and patients. Trust is associated with higher patient satisfaction, better perceived quality of care, enhanced treatment adherence, improved satisfaction, and higher quality of life with fewer symptoms. Building trust with minority patients may require extra effort due to experiences of racism & discrimination within the healthcare system. Optimal communication skills, knowledge about the patient’s values, beliefs, and preferences along with the use of open-ended questions and two-way communication will facilitate collaborative decision-making, leading to better treatment adherence, health outcomes, and perceived quality of care. Transparency is another means to build trust and includes providing timely and realistic prognostic information, setting realistic expectations about treatment outcomes, and disclosing clinical information.

Disparities at the end of life can be mitigated through improved communication, relationship building, advance care planning, and community outreach. Information regarding diagnosis, treatment, and prognosis should be delivered to every patient in a timely, honest, and sensitive manner. Making advance care planning a standard for every adult patient would ensure that EOL wishes are known before a time of crisis. Following these recommendations can create an environment in which equitable care is provided to all at the end of life.

Links to additional resources:

Most Diverse States 2022

CAPC: Health Equity

C-TAC: Racial Disparity

C-TAC: Advanced Care Transformation Report 2022

Unintended Harm? Race Differences in the Relationship Between ACP and Psychological Distress at the EOL

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