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Racism and casteism: global chasms of access to palliative care and pain relief
  1. William E Rosa1,2,
  2. M R Rajagopal3,4,
  3. Afsan Bhadelia2,5,
  4. Katie Fitzgerald Jones6,
  5. Judy Khanyola7,
  6. Felicia Marie Knaul2,8,9,10,
  7. Joan Marston11,12 and
  8. Dingle Spence13,14,15
  1. 1Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York City, New York, USA
  2. 2Institute for Advanced Study of the Americas, University of Miami, Coral Gables, Florida, USA
  3. 3Trivandrum Institute of Palliative Sciences, Thiruvananthapuram, Kerala, India
  4. 4Pallium India, Trivandrum, India
  5. 5Department of Global Health and Population, Harvard University T.H. Chan School of Public Health, Boston, Massachusetts, USA
  6. 6Boston College William F. Connell School of Nursing, Chestnut Hill, Massachusetts, USA
  7. 7Center for Nursing and Midwifery, University of Global Health Equity, Kigali, Rwanda
  8. 8Department of Public Health Sciences, University of Miami Miller School of Medicine, Miami, Florida, USA
  9. 9Tómatelo a Pecho, Mexico City, Mexico
  10. 10Fundación Mexicana para la Salud, Mexico City, Mexico
  11. 11Palliative Care in Humanitarian Aid Situations and Emergencies, University of Edinburgh, Edinburgh, UK
  12. 12Palliative Care for Children Bloemfontein, Free State, South Africa
  13. 13Hope Institute Hospital, Kingston, Jamaica
  14. 14University of the West Indies, Kingston, Jamaica
  15. 15Cicely Saunders Institute, King's College, London, UK
  1. Correspondence to Dr William E Rosa, Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York City, NY 10065, USA; rosaw{at}mskcc.org

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Minoritised racial, cultural and ethnic groups experience substandard palliative care (PC) and pain-related outcomes across all settings in absolute and relative terms.1–4 The suffering of Black, Indigenous and People of Colour (BIPOC) has been and continues to be frequently silenced through fear, intimidation, abuse, experimentation and eugenics, all of which have then been used to rationalise lack of access, shrouding both deliberate marginalisation and indifference in an argument around a lack of need for palliative care and pain relief (PCPR) based on prejudice rather than evidence.5 As a result, BIPOC are consistently subjugated to grave disparities of suffering through scientific racism and the clinical minimisation and distortion of their experiences, including appalling claims that they experience less pain than their White counterparts—or no pain at all—for the same ailments and injuries.6 Though racism is being discussed with increasing frequency, casteism is a critical factor and is defined as, ‘(a)ny action or structure that seeks to limit, hold back, or put someone in a defined ranking, (or) seeks to keep someone in their place by elevating or denigrating that person on the basis of their perceived category.’7 If racism is the house that shelters the privileged and excludes the marginalised, casteism is the foundation that sustains inequity from the bottom up.

Modern iterations of racism and casteism in PC settings are described in several ways and are largely resultant of structural inequities that prevent fully integrated, accessible, and tailored PC provision for many BIPOC. For instance, Black individuals at the end of life are more likely to die in acute care settings rather than at home, more frequently elect “aggressive”8 and potentially harmful disease-modifying interventions at end of life, have lower rates of hospice use before death, and are less likely to …

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Footnotes

  • Twitter @BRosa_PhD

  • Contributors Conceptualisation: WER. Writing—original draft: all. Writing—revisions: all. Approval of final manuscript: all.

  • Funding Tómatelo a Pecho receives funding from Merck Sharpe & Dohme and Higia. FMK is the senior economist of the Mexican Health Foundation, a Mexican NGO, which receives funding from Fundación Gonzalo Río Arronte and reports consulting fees from EMD Serono, a business of Merck KGaA, Darmstadt, Germany and grants from US Cancer Pain Relief Committee unrelated to the topic of this Comment. WER acknowledges the National Cancer Institute Cancer Center Support Grant (P30 CA008748). KFJ acknowledges the National Institute of Nursing Research Ruth L. Kirschstein National Research Service Award (F31NR019929).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.