Equitable Palliative Care

Categories: Leadership and Opinion.

About the Author:

Dr Joris Gielen, PhD, is the Director of the Center for Global Health Ethics at Duquesne University, Pittsburgh (PA, USA). In his research, he focuses on religion, spirituality and ethics in palliative care from a global perspective. He has conducted research projects in Belgium, the US, and India.

 

March 21 has been marked by the United Nations as the “International Day for the Elimination of Racial Discrimination.” When people commonly reflect upon racial discrimination, they often think in the first place about instances in which people openly deny other people goods, services, or job opportunities because of the way these other people look, dress or behave. While such acts of open racial discrimination are bad and obviously need to be condemned, they are unfortunately only the tip of the proverbial iceberg. Racial discrimination most often happens in ways that are, at first, ostensibly less visible and harder to detect.

For instance, when an employer rejects a candidate to a vacant position because of the candidate’s racial, ethnic, or even religious background, that employer will rarely acknowledge the true reason why the candidate did not get the job. Other reasons may be cited: “The candidate was not a good fit,” or “Her qualifications were no match for those of the other candidates.” All over the world, people know that racism is unacceptable and no one wants to be known as a racist. That does not mean, however, that people may not perform racist acts consciously or unconsciously. Much racial discrimination, indeed, happens unconsciously, without the perpetrators even being aware that they are committing racial discrimination. To illustrate this, one could think about the feeling of discomfort a person may feel when dealing with a person from another racial background. Such irrational feelings of discomfort may result from stereotypes and biases towards people belonging to that racial minority that circulate in the community and that people belonging to the racial majority may have internalized without being aware. Although feelings of discomfort may sound harmless, such feelings may have very profound impacts on people’s lives: they may impede human relationships, communication, and business and professional transactions. Even healthcare and palliative care have not escaped the consequences of unconscious racism.

In the US, countless studies have shown substantial disparities between people belonging to the white majority and people belonging to racial and ethnic minorities, such as African Americans and native Americans. These minorities have poorer health outcomes: they have less healthy years and die sooner. To some extent, these health disparities are caused by disparities in healthcare. Racial and ethnic minorities in the US have less access to quality healthcare than people belonging to the majority white population. The reasons for these disparities in healthcare access are manifold. Racial and ethnic minorities tend to be poorer, and thus have less money to spare for healthcare. They are less likely to have good jobs that come with health insurance and are more likely to live in areas that are less healthy as a living environment because they have been contaminated by industry. The list does not end there.

However, even when racial and ethnic minorities do receive healthcare, the outcomes tend to be poorer. The reasons are, again, manifold, but studies have been unable to exclude healthcare provider bias and possibly even racism as a cause. The data seem to show that healthcare providers treat racial majority and minority populations differently, to the obvious disadvantage of the minority populations. Pain management and palliative care have not been spared. In the US, African Americans are less likely to use palliative care services than the majority white population. Because of a history of slavery, abuse of African Americans in healthcare research, and a long history of discrimination and racism in healthcare, many African Americans distrust healthcare, including palliative care. Even regarding pain management, studies have shown that African Americans are less likely to receive adequate care. The lower quality of care in the area of pain is said to be rooted, among other reasons, in racial stereotypes according to which African Americans would feel less pain (and, thus, need less pain medication), and according to which African Americans are more likely to become addicts and abuse pain medication.

This brief description of racial discrimination in healthcare illustrates that much data that we have on this topic comes from the US. Due to the particular history of slavery and racial segregation in the US, the findings from these studies cannot be extrapolated to other countries. However, there are things that palliative care organizations in India can learn from these findings. In India, like everywhere in the world, there are populations that are historically disadvantaged and, sometimes, still experience discrimination. The International Day for the Elimination of Racial Discrimination may be an excellent Opportunity for palliative care professionals to reflect upon which groups of people are the subject of discrimination or racism within the area or region in which their palliative care program is active. In a next step, it may be good to evaluate whether these populations are adequately represented among the patients that the palliative care program is serving. If they are not, we will need to know why they are less likely to receive palliative care and what kind of outreach or education can be undertaken to make palliative care more accessible to them. This exercise may help us achieve truly equitable palliative care that is free of discrimination.

 

Note: This article is a republication from the Indian Association of Palliative Care‘s (IAPC) free monthly e-newsletter (April edition).

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