Words Have Power: Strategies to Reduce Stigmatizing Language in Palliative Care Documentation

Sarah, a woman in her 40s with endometrial cancer previously treated with surgery, presented to the palliative care clinic with abdominal pain. She was prescribed acetaminophen, ibuprofen, and oxycodone as needed for pain. Two days later, she reported her oxycodone had been stolen.

In the chart, the physician documented that the medications were “apparently stolen” and quotes the patient as saying, “[she was] not a dopehead.” Her opioids were not re-prescribed. Later imaging showed she had residual cancer at the previous surgical site, suggesting her cancer pain had been undertreated in the interim time.

This patient case is a prime example of how documentation can contribute to painting a picture of the patient that evokes stereotypes while reducing curiosity about the source of pain.

Stigma is a social phenomenon in which labeling, negative stereotyping, and linguistic separation occur in an asymmetric or unbalanced relationship.^[1] It can occur through language where a person or a group of people are marked or signaled as being less worthwhile, thus meriting inferior treatment.^[2] Stigmatizing language can label someone as “other,” assigning responsibility or blame on the person, and invoking danger or peril.^[3] Language transmits intended and unintended meanings, including stigmatizing meanings, which can perpetuate socially constructed power imbalances and become so common that they are invisible.^[4]

In health care, stigmatizing language transmits bias—whether implicit or explicit—that makes people view certain populations negatively.^[5] Clinicians, health care organizations, and health systems risk having bias embedded in their everyday practices.^[5][6][7][8] Whether bias is based on race, ethnicity, socioeconomic status, gender identity, or disability, to name a few, it can affect all aspects of care.

Using stigmatizing language has several negative effects on patients and families, including:

• Placing blame on the patient
• Evoking negative attitudes towards the patient, with possible:
  • Undertreatment of pain and other conditions^[9]
  • Erosion of trust and rapport between the patient and family, and health care team
  • Reduced treatment engagement^[10]; such as missed appointments
  • Reduced access to goal-concordant care
• Overemphasizing a patient’s behavior(s); for instance, perceiving a patient to be at fault or in control to the exclusion of contextual factors, such as whether they are coping with trauma, poverty, or structural inequities^[10]

There’s a long history of bias in medicine, with a notable example being pain and symptom management. Medical journals from the 1800s described differences in skin thickness and pain tolerance between racial groups, and these misperceptions still exist—with resulting discrepancies in pain assessment and management for white compared to minoritized populations.^[11][12] Other false ideas, such as that women^[13] and older people^[14] perceive pain less, also contribute to bias.

In palliative care, we ask our patients to describe what causes them suffering and what brings them strength, such as how they cope. The combination of serious illness complexity and vulnerable conversations often brings up important factors, including marginalized identities and substance use history.

Occasionally, when there is no alignment between a patient’s and the clinical team’s priorities, coping styles are misunderstood. For example, patients who have used substances to cope with trauma and have high opioid tolerance may be labeled as drug-seeking.^[15] In contrast, other patient groups who defer medications due to cultural or religious practices may be labeled as non-compliant.^[16][17]

When stigmatizing language is used in clinical documentation to describe patients, it can influence subsequent clinician attitudes toward the patient and the clinicians’ management and treatment strategies, such as which medications are prescribed. Because the medical record is how health care teams communicate about patients with other clinicians, stigmatizing language in a patient’s chart can unconsciously propagate bias from one care team member to another.

For example, in one study, emergency clinicians who referred to patients with sickle cell disease as “sicklers” were more likely to have negative attitudes toward patients and less likely to adhere to national guidelines on the use of opioids for sickle cell disease-related acute pain episodes.^[18]

In another study, two vignettes were presented, with one patient described as having “substance abuse” and another with “substance use disorder.”^[19] Mental health clinicians felt the “substance abuser” was culpable and required legal implications for the management of their condition.^[19]

Exposure to stigmatizing language in clinical documentation is also associated with undertreatment of pain. In another randomized study, trainees who read a chart note with stigmatizing language treated pain less aggressively compared to those who read a neutral chart note.^[9]

We all play a role in advancing health equity and ensuring high-quality care for our patients. By paying attention to the language used in medical records, clinicians can promote patient-centered care and reduce health care disparities for stigmatized populations. Clinicians can adopt the following strategies to reduce stigmatizing language:

Person-first language reminds readers that people are more than their disease processes or social labels.^[20][21]

Social identifiers can evoke stigma or unfounded assumptions on how “deserving” the patient is of a good outcome or good care.^{[20][21][22][23]}

Clinicians are in a position of power and privilege in choosing what parts of the patient interaction we document. Language that casts doubt on the patient’s credibility is disempowering and may prevent them from being taken seriously or at face value when describing the truth of their experience.^[24][25]

Using language that places blame on patients puts the clinician in a position to make presumptive judgments and to miss the larger picture. Placing blame on individual patients for circumstances that are out of their control—such as health system issues, political, or economic systems, or other structural factors—is untruthful and interferes with rapport.^[20][26]

Using terms like “abuse,” “dirty,” or “relapse” can evoke negative attitudes that result in worse care.^[10][17][27]

Palliative care clinicians are experts in managing symptoms, elucidating values, and using holistic approaches to help patients and their families navigate serious illness. Our documentation and treatment plans should reflect these skills and our role as patient advocates. We have an opportunity to mitigate harmful stereotypes and misconceptions, re-establish the patient’s voice at the center of care, and potentially prevent disparities in treatment by using the strategies above to avoid stigmatizing language.

Thank you to the following people who contributed their expertise to inform the writing of this blog:

• Brittany Chambers MPH MCHES, Director of Health Equity and Special Initiatives, Center to Advance Palliative Care (CAPC)
• Jennifer DiBiase DSW, LCSW-R, APHSW-C, Adjunct Assistant Professor, Silberman School of Social Work at Hunter College, and Advance Care Planning Program Coordinator, NYU Langone Health
• Noelle Marie Javier MD, Associate Professor of Geriatrics and Palliative Medicine at Icahn School of Medicine at Mount Sinai (ISMMS)
• Lauren Kelly MD, Assistant Professor of Geriatrics and Palliative Medicine at Icahn School of Medicine at Mount Sinai (ISMMS)
• Caitlyn Kuwata MD, Associate Program Director at University of Southern California / Los Angeles General Geriatric Fellowship Program
• Beth Popp MD FACP HMDC FAAHPM, Professor of Geriatrics and Palliative Medicine at Icahn School of Medicine at Mount Sinai (ISMMS)

We thank the Mount Sinai Hospice and Palliative Medicine fellowship program for their support of didactics that contributed to the content of this post.

Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.