This is the third in a series on this blog: “Looking Back, Looking Forward: Our Legacy in Improving End-of-Life and Serious Illness Care.”
Culture plays an important part in how we experience serious illness and the end of life. It influences how we think about, approach, address, respond to, and process what is for most of us an unfamiliar terrain. During such stressful times, culture can provide us with guidance, direction, and comfort.
But what is culture and how does it influence us? Culture is often defined as a learned set of values, norms, and beliefs that give meaning to daily life. These values, norms and beliefs shape how we process information and interact with others. They are expressed through a shared system of symbols, language, rituals, roles, and rules of behavior.
Traditionally, we think of culture as something “different” from the ways of the dominant society. We have an implicit bias that what we see as “normal” – such as the normal way to handle a health problem, or the normal way to grieve, or the normal way to communicate with a healthcare provider – is the “right way” and that anything else, while not “wrong” per se, is a deviation and “deviant.” This also leads to the belief that someone who is part of the dominant culture doesn’t even have a “culture.” Culture is only for “others.”
This traditional approach to culture has not served us well. It is the very foundation through which racism, genderism, ageism, and all other “isms” have been built into the very fabric of our institutions and society as a whole.
The Diversity of Diversity
So what is another way we can think about culture that is more inclusive and respectful – and may actually be helpful? In the early days of the Coalition for Compassionate Care of California, we learned from some thought leaders on culture about the “diversity of diversity.” They opened our eyes to the myriad factors that may shape a person’s culture. For example, culture isn’t just race and ethnicity. Rather, it includes religion and spirituality, gender, sexual orientation, age, physical or mental disability, socio-economic status, geographic identification, and many other factors. It’s this diversity of diversity that is often referred to as “intersectionality.” A person’s culture is a reflection of the intersection of all the different cultural influences on that person.
And so we cannot assume that, just because people are part of a particular cultural community, we know their specific culture. Even people in the same family may vary culturally because of intersectionality. This means that, when interacting with people around sensitive subjects such as serious illness or end of life, it’s important to not make assumptions. Bringing cultural curiosity, humility, and sensitivity to the interaction is more effective. To borrow a concept from Zen Buddhism, we should bring a beginner’s mind, the mindset and curiosity you have when you’re learning something for the very first time.
Bringing a Beginner's Mind to Cultural Awareness
As we try to become more culturally sensitive and responsive while supporting people during serious illness or their end of life, it can be helpful to know where our blind spots might be. The more we know about where and how culture might show up, the better we can prevent unintentionally imposing our cultural beliefs and assumptions on others.
Here are some aspects about serious illness or end of life that may be influenced by a person’s culture:
- Making medical decisions. What philosophical value is the foundation for the person’s approach to medical decision making? Is it personal autonomy? Could it be familism, a strong identification with and prioritization of family over personal needs? Would they prefer a physician or medical team make all the decisions? Or something else?
- Choosing a surrogate. What does the person’s culture say about who should be involved in making medical decisions for them? For example, is the oldest male child automatically responsible for being the surrogate? Should the person’s religious leader be consulted about medical decisions? Or others?
- Surrogate responsibilities. What are the cultural expectations about how to be a good family member or decision maker? For example, is filial piety – the expectation that children take care of parents and show them respect, love, loyalty and reverence – a cultural value? Does honoring the person mean advocating for aggressive and invasive care?
- Truth telling. How does culture influence the degree of candor and directness in talking with a person about medical issues? Is candid information about a condition the person’s right to know? Does sharing this information show respect for the person? Or should the patient be “protected” from the truth? Is sharing bad news inviting bad spirits, such as sadness or hastening death?
- Trust of the healthcare system. What is the individual’s personal or historical experience with the healthcare system? Have they, their family members or their ancestors experienced medical discrimination or harm? Have they lacked medical insurance most of their life? Do they perceive providers as trustworthy?
- Culture provides a framework for making sense of our lives. What is the meaning of the person’s disease? What is the role of suffering in our lives? What is the meaning of death?
- Death in the home. Cultural beliefs may impact where a person wants to spend their last days. Many view “dying peacefully at home surrounded by loved ones” as the gold standard. But in some cultures, it is considered bad luck to have a death in the house.
- Home-based care. Culture may impact a person’s feelings about hospice or other care provided at home. For example, is it appropriate to allow strangers – who may not know your language or culture – into your house to help care for a vulnerable loved one?
- Rituals. Culture often provides guidance on rituals to help people process important events in their lives, including handling of the body, honoring the person, and expressing grief and bereavement.
- How do we help ensure patients receive culturally congruent care? Here are some ways to help build a culturally responsive healthcare system:
- Team-based care increases diversity among care providers, increasing the chance that providers and patients will share similar cultural experiences.
- Community Health Workers, who come from and reflect the community being served, play an important role in helping patients feel culturally honored.
- Training that gives providers the opportunity to reflect on their culture and become more aware of their cultural biases and assumptions goes a long way in increasing cultural sensitivity.
- Technology developed to enhance the personal connection between providers and patients can help providers be fully present with their patients.
Building Bridges to Better Care
At the Coalition for Compassionate Care, we have developed “Building Bridges,” training on cultural sensitivity at the end of life. Our goal is to equip healthcare professionals with the insight and tools needed to provide patients and family members with care that is culturally congruent. More than 500 people have attended Building Bridges.
Having the opportunity to explore one’s own culture can be transformative. Some feedback we’ve received from attendees includes:
- “I thought my patient was non-compliant. Now I realize that it was actually a cultural misunderstanding on my part.”
- “This course has changed how I view all of my interactions with people, including my next-door neighbor.”
Depending on how much cultural exploration an organization wants to engage in, Building Bridges can be provided as a full-day training or one-hour module. Approaching end of life care with these considerations around culture can help improve serious illness care for all, in a way that honors patients’ individual cultures and experiences.
