Expert Insights: Cultural Considerations in Hospice Goals-of-Care Conversations

VITAS Healthcare’s panel webinar, Perspectives on Cultural Considerations in Goals-of-Care Conversations, offered practical insights from industry experts Maite Hernandez, RN, Senior Director, Patient Access Development; Diane Deese, Vice President of Community Affairs; Joseph Shega, MD, Executive Vice President and Chief Medical Officer; Sandhya Bhalla-Regev, MD, Regional Medical Director; and Larry Hetu-Robert, Veteran Liaison and Bereavement Manager.

Here’s a summary of what we learned:

Culture plays a significant role in shaping how patients and families approach end-of-life decisions. It influences preferences for care, decision-making approaches, and views on key aspects of care such as pain management and advanced directives.

For hospice care to truly serve its purpose, healthcare professionals must approach each patient, family, and conversation with an open mind. By creating an environment of trust and respect, healthcare professionals can address the complexities surrounding culture and ensure care plans align with patients’ values and wishes.

Viewing Culture Through a Wider Lens

VITAS Vice President of Community Affairs Diane Deese offered her perspective on why keeping an open mind is critical to enhancing cultural awareness during goals-of-care conversations. She described some of the principles at the heart of culturally sensitive care and how they form the foundation of effective communication: humility, sensitivity, acceptance, and respect.

Diane explained that while the cultural stigma surrounding end-of-life care is often viewed through the lens of race and ethnicity, “culture” can be defined in a variety of ways: by age, education, country of origin, gender, generation, religious or spiritual preferences, military service, sexual orientation, and socioeconomic status.

Demonstrating respect and cultural humility—no matter how a patient defines it—helps healthcare professionals build the trust and rapport necessary to facilitate effective goals-of-care conversations and, ultimately, provide support tailored to their wishes.

When and How to Initiate Goals-of-Care Conversations

A nurse sits at a table and talks with an elderly husband and wife

When discussing end-of-life care, healthcare professionals must approach the dialogue with sensitivity, cultural awareness, and a structured framework. Although hospice improves outcomes for patients, families, and caregivers, misconceptions and cultural differences can create barriers.

VITAS Executive Vice President and Chief Medical Officer Joseph Shega, MD, explained how thoughtful communication is key to addressing these challenges and outlined the SPIKES protocol to facilitate effective goals-of-care conversations.

Goals-of-care conversations help patients and families make empowered, informed decisions about their end-of-life experience, so it’s important that healthcare professionals explain the benefits of hospice. One of the main benefits, he explained, which is often shared across cultures, is the desire for the patient to remain in the comfort of their own home, surrounded by family and loved ones.

Patients who receive hospice support also reported better satisfaction, pain and symptom management, fewer hospitalizations, less physical and emotional distress, and overall better quality of life compared to those who did not. Caregivers were also significantly less likely to have prolonged grief disorders, severe anxiety, and post-traumatic stress disorder symptoms after their loved one died.

Cultural Sensitivity: Practical Application

VITAS Regional Medical Director Sandhya Bhalla-Regev, MD, and Veteran Liaison and Bereavement Manager Larry Hetu-Robert provided real-life examples of culturally sensitive care and how the VITAS team incorporated families into the decision-making process while honoring the patient’s wishes (scroll through to read four case studies):

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Addressing Common Misconceptions Through Empathetic Education

A patient of Hispanic descent in their 80s presented to the emergency department and was diagnosed with acute myeloid leukemia. Opting not to pursue chemotherapy, the patient chose hospice care at home. The patient’s adult children, however, advocated for continued medical interventions, including transfusions. They were concerned that hospice care meant ceasing all medical treatment, a common misconception. Additionally, cultural values emphasizing family centered decision-making and the Spanish term "hospicio" (which translates to "orphanage") added layers of complexity to the discussion.

Key Interventions:

Family Engagement: A home-based meeting was arranged, involving the patient’s adult children, their spouses, the patient’s brother, a hospice nurse, and a social worker. The SPIKES protocol helped guide the discussion, ensuring empathy, open communication, and cultural sensitivity.
Education With Empathy: The team addressed misconceptions about hospice and clarified that hospice care permits treatments like transfusions when appropriate. The team balanced the family’s desire for interventions with the patient’s declining condition, explaining the temporary benefits and risks of transfusions.
Cultural Sensitivity: Recognizing the family’s central role in decision-making, the team explored their concerns with humility and curiosity, fostering trust and understanding.

Outcome

The patient’s children supported the patient’s decision once they understood that hospice care focused on comfort and quality of life. The patient remained at home with the support of additional interventions and a period of continuous care monitoring when a high level of care was needed. The hospice team managed symptoms, including shortness of breath, allowing the patient to pass away peacefully at home, surrounded by family.

Overcoming Language Barriers and Cultural Hesitation

A patient of Chinese descent in their 60s, experienced a decline due to vascular dementia. The patient lived with their spouse and adult child and son until worsening symptoms led to a fall and subsequent transfer to a nursing home. The patient and the patient’s spouse spoke only Mandarin, while their adult child, fluent in both Mandarin and English, acted as the primary communicator with the medical team. After a hospitalization and additional complications, the patient was referred to hospice.

The family’s Chinese cultural values, emphasizing filial duty, familial harmony, and the symbolic importance of food as care, played a central role in decision-making. The adult child, balancing the role as translator and decision-maker, faced a significant emotional burden.

Key Interventions:

Use of Interpreters: The team engaged a Mandarin-speaking interpreter for accurate communication, cultural insights, and emotional support during family meetings.
Family Engagement: Recognizing the family unit as the decision-maker, the team addressed concerns about nutrition and explained the potential harm of excessive fluids in a declining body.
Cultural Sensitivity: The team navigated cultural hesitations around pain management, helping the family accept morphine for the patient’s comfort.

Outcome

The patient returned to the nursing facility, where the family, supported by the hospice team, embraced culturally sensitive care. He passed away peacefully, surrounded by loved ones.

Honoring Dual Cultures and Family in Decision-Making Process

A Chinese American patient and Vietnam War veteran was diagnosed with advanced ischemic heart disease. The patient was referred to hospice following multiple hospitalizations. One of the patient’s adult children supported their wish for comfort care at home, but other adult children advocated for aggressive treatments, citing cultural and familial values.

The patient’s dual cultural identities—Chinese heritage and military background—required unique consideration. Cultural barriers, such as the stigma around topics like death and the stoicism ingrained in both Chinese and military cultures, complicated the goals-of-care discussions.

Key Interventions:

Patient-Centered Approach: The team began by asking the patient what mattered most to her, emphasizing her values, dignity, and comfort.
Family Engagement: The team acknowledged the family’s cultural values, explaining that seeking every treatment can show love, but honoring the patient’s wishes can also bring peace. They clarified that hospice care focuses on quality of life.
Cultural Sensitivity: Recognizing the sensitivity around discussing death in Chinese culture, the team framed conversations around life-threatening illness rather than explicitly mentioning dying. They used empathy to illustrate that choosing hospice is not giving up, but a different kind of care grounded in respect and dignity.
Veteran-Specific Support: The team highlighted the patient’s veteran status, ensuring she received all appropriate benefits. They also addressed the military culture of stoicism, helping the patient and family understand that pain management is not a sign of weakness but a way to ensure dignity in her final days.

Outcome

The patient’s family came to understand the scope and benefits of hospice care, including its alignment with the patient’s wishes for comfort and dignity. The patient remained at home, supported by hospice and veteran-specific services. The patient passed away peacefully, surrounded by family, with their military service and cultural values honored.

Reframing End-of-Life Care for a Devout Family

A Black patient with advanced Hodgkin's lymphoma was raised in a devout Christian household, but the progression of illness and prolonged treatments led to a crisis of faith. The patient sought comfort-focused hospice care, but deeply religious parents and grandparents held onto hope for a miracle and advocated for continued aggressive treatments. The patient hesitated to express their wishes openly, fearing disappointment.

Balancing the patient’s spiritual distress and desire for autonomy with the family’s strong faith was challenging. Cultural considerations, including the centrality of the family unit and the role of clergy in the Black community, further complicated the goals-of-care discussions.

Key Interventions:

Patient-Centered Approach: The team acknowledged the patient’s physical, emotional, and spiritual burdens, creating a safe space to explore feelings and needs without judgment.
Family Engagement: The team respected the family’s faith, framing hospice as a sacred space for healing relationships and meaningful time, rather than “giving up.” Open-ended questions, such as “What does hope look like for you now?” helped facilitate dialogue.
Spiritual Support: Recognizing the patient’s crisis of faith as a valid and common experience, the team encouraged spiritual exploration. They involved chaplains and, with permission, trusted clergy to provide non-directive support, ensuring the patient’s beliefs were honored without imposition.

Outcome

Through compassionate listening and culturally sensitive care, the hospice team supported the patient in expressing wishes for comfort-focused care. The family began to understand that hospice could provide a sacred space for healing and peace, even in the absence of a cure. The patient was able to explore faith on their own terms, finding moments of clarity and connection in his final days.

To deliver culturally sensitive care, healthcare professionals must keep an open mind and adopt a broad view of culture that extends beyond race and ethnicity. Respecting cultural diversity and individuality helps build trust, improve communication, and ensure that care aligns with a patient’s wishes.