End of Life Care: Cultural Values in the Latinx Community (Panameño, 3/3/2021)

Dr. Karla Panemeño gave thought-provoking and important Grand Rounds this week on End of Life Care: Cultural Values in the Latinx Community. You can watch a recording of her presentation here: video to be uploaded.

Dr. Panemeño began her presentation with a brief history of hospice, and she pointed out that hospice is very much a "western phenomenon" with much of Latin America is still lacking the concepts of hospice and palliative care principles embedded in their own healthcare systems. She also reminded us that the Latinx community is the fastest growing ethnic minority group in the US, and that the COVID-19 Pandemic has disproportionately affected Latinx in our country (3x the hospitalization rate) and our own local community (while Latinos make up 27% of our SoCo population, they comprise 67% of our cases).

There is mixed evidence on Latinx use of end of life services, but generally the Latinx community tends to be less likely to have an advanced care plan and less likely to take advantage of hospice service. There are many reasons why this may be true, including: language barriers, financial barriers (many immigrants are not eligible for Medicare), knowledge about the resources, and cultural values.

Dr. Panameno then spent a good percentage of her remaining time describing key Latinx cultural values that may influence the interactions of Latinx patients with end of life care. She encouraged us that recognizing these cultural values may help us give better care. She reminded us, however, to be careful not to generalize, as the Latinx population in the US is itself a diverse group of people. Also, being aware of an immigrant patient's level of acculturation is important in understanding how these values shape their decisions

• Familismo (family unit)
• Personalismo (personal interactions)
• Respeto (respect)
• Confianza (trust)
• Fatalismo (fatalism)
• Dignidad (dignity)

For me, exploring these cultural values and how to integrate them into the care of acutely and chronically ill and dying patients is such an important take home message.

Here are a few pearls:

Familismo is a family centered model of decision-making highly valued in the Latinx community, may be valued more than autonomy (whereas medical system often values autonomy over all else), involves broad networks of support that extend beyond the nuclear family 

• this may be seen in medical decisions being made as a family unit, rather than by an individual
• also family members very much see themselves as caretakers and often have a strong sense of duty to care for their dying family member
• How do we navigate familismo in the care of patients?
• identify the family spokesperson
• actively engage family members in decisions
• educate and support the whole family

Respeto is a notion that relationships are based in common humanity, and one must establish respect as part of that relationship

• this may be seen in hierarchy within families as to who is designated spokesperson
• patient and family may not be assertive in expressing their concerns, disagreements with clinicians

Personalismo is a value that places an emphasis on your personal interactions, rapport is built on warmth and regard

• pleasant and agreeable conversations with healthcare provider (even when they disagree)
• may not want to disclose poor prognosis to the patient
• How do we navigate personalismo and respecto in the care of patients?
• Be respectful (in the language you use, who you address, etc)
• Respect the familial hierarchy
• Give families time to process
• Take time to know each member of the family -- don't underestimate the value of family 

Confianza is trust in a person with the belief that the other person in the relationship has your best interests in mind.

• many Latinx patients have experienced discrimination based on race, language, etc in the healthcare setting
• How do we navigate confianza?
• follow up on promises, spend additional time with patient/family, make small talk, have open dialogue about prejudice, discrimination, language barriers
• use important key community members (e.g. pastor)

Dignidad: feeling worthy and valued

• may manifest as anxiety at time of death, fear/anger around dying, 
• How to navigate? Open conversation with family members, be curious about the feelings in the room

Fatalismo: a belief ones future is not in your own hands, not in your own control

• patients may seek care late in their illness
• may express hope for a miracle
• How to navigate? Explore thoughts/feelings/values, validate the role of others' control

I encourage all of us who take care of Latinx patients to consider how these cultural values may influence our patients' interactions with us and with the healthcare system, and not to overgeneralize but rather apply this lens humbly in how we care for patients.