Terri Maxwell, Ph.D.

Palliative care is specialized care that focuses on providing individuals relief from the stress, pain and other symptoms of a serious illness, no matter the diagnosis or stage of disease. Offered alongside curative or other treatments, palliative care adds a layer of support that offers symptom management, support and advice, referrals for hospice and advance care planning to meet an individual’s goals and care preferences.

Many Black, Indigenous, Hispanic, Muslim and Asian communities face less access to higher quality care in general. Populations with less access to care are also more likely to be diagnosed with late-stage illness, which leads to worse outcomes, consistently higher mortality rates and greater suffering. Despite the many benefits of palliative care for seriously ill people and their families, deeply held cultural traditions and beliefs of some racial and ethnic groups impact the adoption and utilization of palliative services.

Culturally sensitive palliative care clinicians understand and respect the values, beliefs and traditions related to health and illness, socioeconomic status, family caregiver roles, culturally nuanced decision-making and communication preferences around goals and advance care planning. In the absence of this level of cultural understanding, many individuals may reject palliative or hospice support and receive care that is not aligned with their wishes.

Efforts to reduce barriers to hospice and palliative care should target patients and healthcare professionals —and gain support from governmental structures — to ensure that new models of care accommodate the diverse needs of people from all racial and ethnic backgrounds.

Importance of cultural competency

Culturally competent clinicians help to improve health outcomes, impact care quality and lessen racial and ethnic health disparities. Toward that end, palliative clinicians benefit from cultural competence and cross-cultural training, as well as organizational policies designed to reduce barriers to patient care. It is also critical for clinicians to recognize their own cultural identities, internal biases and experience of privilege and power, and how these factors affect their work.

Overcoming language barriers is important to address medication education, symptom management, advance care planning and other tenets of palliative care.

Understanding communication preferences

When it comes to end-of-life decisions, in many cultures, it is important to engage the patient’s family to improve management of pain and other symptoms, address emotional and other stress associated with serious illness, provide support to caregivers and ensure the care plan matches the patient’s and family’s goals. While some cultures prefer aggressive care at the end of life, many prefer spending their final days at home. By educating patients and their families about in-home care options, the likelihood of dying in the hospital or experiencing frequent hospitalizations during their final weeks or months is lessened.

Understanding communication preferences is critical because racial discrimination and cultural insensitivity can lead to a breakdown in communication and understanding of goals between provider and patient.

Here are some examples of cultural differences:

  • Latinos and Asians are less likely than whites to discuss their end-of-life preferences or engage in advance care planning. Less than 10% of Latinos have announced or written down their preferences about the kind of care they would want at the end of their lives. In general, Latinos and Asians often prefer a family-centered approach to communication and decision-making.
  • For an Islamic family, hospice care can help them fulfill a cultural and religious obligation if the focus is on comforting the patient rather than helping them to accept impending death. It is common for Muslim patients to refuse life-extending care because they believe only God has the power to create life, as well as cause death.
  • Some Filipinos may request that the family member not be told they are dying because of concern for the person’s loss of hope and the belief that only God can decide their fate.
  • For many Southeast Asian families, the dying family member is not to be told about a terminal diagnosis because talking about death is thought to bring it on sooner or is considered disrespectful. 

Living in an ethnically and culturally diverse society requires healthcare providers recognize and respect the profound influence of culture on their communication and end-of-life preferences. Healthcare professionals that learn the nuances of culture understand that they can be more effective in meeting patient and family needs and wishes.

Opportunities to overcome barriers

Palliative care plays an important role in addressing health disparities and forming trusting relationships to support individuals’ goals and wishes toward the end of life. In today’s new normal, health systems and clinicians should strive to meet the holistic needs of patients and family caregivers in the face of serious illness. Education, payment and health equity reforms are needed to hold clinicians accountable to those they serve.

Interdisciplinary palliative care team members should be trained to identify and resolve social, financial, environmental and emotional challenges facing patients and caregivers. This includes having the skills to find resources, coordinate care and enhance communication among all patients, their healthcare providers, health plan case managers and anyone involved in the patient’s care.

Role of home-based palliative care in promoting equitable care

Home-based palliative care (HBPC) by specially trained healthcare professionals fosters quality care in the home and, for those who are terminally ill, timely election of the hospice benefit. This approach is effective for narrowing disparities and promoting more equitable health services through person-centered, family-centered and community-centered engagement based upon individual and family goals. 

By providing culturally competent home-based care and getting to know patients and their caregivers in their homes, HBPC teams can see firsthand social determinants of health (SDOH), including economic and social conditions that may be impacting the patient’s health.

This approach builds trust over time that enables the team to engage patients in sensitive discussions about goals of care, including the concept of potentially placing limitations on non-beneficial treatment, so the care that the patient and family receive may be more concordant with their wishes and result in better quality.

Terri Maxwell, Ph.D., APRN, is chief clinical officer at Turn-Key Health, a CareCentrix company.