People have wondered what it would be like to face the unimaginable: hearing a physician read off a hopeless list of test results, being forced to make an inconceivable decision regarding intubation and life support, while questioning what their beloved friend or family member would have wanted. Health providers often avoid and families often put off discussing end-of-life care. Yet, death is an inevitable and inescapable reality.
For some people faced with chronic conditions, end-of-life planning and palliative care must be considered with more immediacy. The two most common methods for the official establishment of advance directives or end-of-life decisions are through legal documents, such as a living will, or durable power of attorney. A living will records a patient’s wishes regarding use of medical intervention technology in cases where the patient loses immediate decision-making capability. Advance directive codes like DNR (do not resuscitate) and DNI (do not intubate) make a patient’s wishes clear and preserves their self-determination in moments when they cannot advocate for themselves. A durable power of attorney grants power to a proxy, usually a family member, who then has legal power to act on the patient’s behalf if the patient becomes unable to communicate.
Those with terminal or life limiting illnesses are often informed of these legal options in advance of an emergency situation. The Patient Self Determination Act of 1990 affirmed that advance directives must be a routine part of the hospital admittance process. Even so, for marginalized and minority populations, the importance of end-of-life planning and advance directive completion is often ignored. This oversight is a tragic infringement on human integrity. Dignity in death and equity in self-determination should be accessible for all.
An example illustrates the issue in action: a 98-year-old woman arrives at an emergency room with no advance directive. In this situation, the legal responsibility of physicians is to resuscitate her at all costs. While they manage to save her from dying, she very well may also be spending her last moments unable to walk, talk, eat, or communicate with loved ones. Would this woman in her late-nineties have wanted to be intubated, spending her dying moments immobilized and powerless? Perhaps not. However, the moment this patient arrived through the hospital doors without legal documentation about her end-of-life desires, she no longer had autonomy in this decision.
While more than 25% of Medicare beneficiaries have not submitted any official legal advance directives, a study has shown that the medical field’s neglect of marginalized communities are more grave that this statistic alone. The detailed analysis concluded that minority and marginalized groups are at a greater risk for not even having a advance care planning discussion with their healthcare provider, which is the legal minimum for all patients.
A study funded by the Center for Disease Control and done by Dr. Krista L. Harrison et al (2016) used data from the National Health and Aging Trends Study (NHATS) incorporated three self-report measures that detailed the extent of their advance care planning conversation. The study also included concrete initiatives toward filing an advance directive. The 65 and older participants were asked the following questions: 1. If they had discussed the medical treatment they wished to have if seriously ill in the future, 2. if they had any legal arrangements for a surrogate decision maker in an emergency, or 3. if they have formal written instructions about medical treatment desired if incapacitated (1).
Age, sex, race/ethnicity, and income were used as subgroup characteristics for further analysis. Four subgroups had significantly different results then the average (2). The study identified Latino, African-American, low-level of education, and low-income patients as communities that have a higher risk for not only failing to file an advance directive, but not having an end-of-life conversation.
Another study done led by Ivy A. Huang (2016) (3) builds upon this research through considering how religious affiliation and personal health values may affect these results. Religious groups may advocate for specific end-of-life decisions, and personal health values vary along with race and ethnicity. Even accounting for these as potential confounding variables, African-American populations are at a greater risk for not possessing an advance directive; African-Americans are also almost half as likely to have a living will or power of attorney (4).
Additionally, studies show that one size does not fit all when it comes to end-of-life planning. Past research documents the difference between end-of-life care preferences between ethnic groups. African American and Latino populations report desires for more aggressive care interventions and life extending options over comfort-care, compared to Caucasians (5).
Discrepancies as large as these cannot be explained as a mere coincidence. These studies highlight a particularly alarming derivative of broader healthcare inequality. We know that comprehensive healthcare is not even-handed. There are systemic inequities that have deep rooted historical origins. Yet, people often fail to consider that these discrepancies persists all the way to decisions on death. Although the U.S considers a human death as worthy of respect, the U.S healthcare system does not make this standard accessible for all groups. By not extending end-of-life conversation to marginalized communities, our healthcare system is implicitly asserting that certain privileged groups are more deserving of autonomy than others in their final moments. This disparity in end-of-life autonomy exhibits the extent that healthcare discrimination reaches.
Efforts must continue to make end-of-life discussion a priority in patients with chronic illness. In addition, health providers of end-of-life care must consider a patient’s health-literacy and revise the current conversations to each individual’s specific level of understanding. No individual faced with an already painful situation should be stripped of their autonomy simply due to their minority status. Death is a fundamental part of existence; it should be fundamentally dignified for all as well.
Edited by: Jessica Yu
Illustrated by: Victoria Xu