In hospice care, as the care team is crafting a treatment plan, multiple factors are considered for each individual patient. Pain management, best communication processes, and the patient’s views on doctors, hospice care, or dying are all evaluated to provide the best possible care during end of life.

One thing that all these factors have in common is their connection to the patient’s cultural background. Often a patient’s religion is a part of the care conversation, but their cultural background is not always factored. This can cause major issues for a patient in hospice, and oftentimes leads to patients leaving hospice care prematurely. 

According to a recent study, while hospice use has increased significantly over the past 2 decades, racial and ethnic minorities continue to use hospice at a significantly lower rate than white patients (40% black patients/43% hispanic patients vs 53% of white patients). The study also found that minority patients may receive lower quality care than white patients, as well as greater disenrollment and fewer visits from hospice staff in the last days of life for minority patients.

One hospice leader stated, “Ignoring culture is ignoring who the patient is, at their core, and it often results in the patient feeling less comfortable and less engaged in their care experience.” Because culture can be so important to the conversation surrounding care, here are a few key areas where it’s important the patient’s culture is considered when making decisions regarding end of life care.

Pain Management

Many cultures have different views when it comes to pain and the experience of pain. Some cultures view the exhibiting of pain as a sign of weakness, so they will try to downplay or not show signs at all of the severity of pain. For some cultures, their faith plays a big role in their pain. They view pain as a way of God showing them how to experience their disease. In both these situations, providing medications could lead them to distrust treatment or would “lessen their relationship with their faith.” 

Therefore, it is important for the care team to speak with the patient and their family about what pain means for them and what medication is appropriate. If they want to feel the pain as a grounding in their faith, then perhaps you can discuss treatment that simply lessens the pain. This is important since hospice care is about quality of life in the final days, so you may need to find a process where the pain exists but lets the patient still move, eat, and communicate.

Conversations Surrounding Hospice

As we’ve discussed previously, the conversation surrounding hospice care for a loved one can be difficult. Many patients and families can view hospice care as giving up or allowing a patient to suffer. This is especially true for patients from minority backgrounds who already have a somewhat fraught relationship with the medical establishment.

One of the most important things to do is to educate patients and their families about what hospice can do for them. However, the conversation shouldn’t stop there. Some cultures have different hierarchies or trusted people they look to for advice and help in situations like this. This means reaching out to cultural leaders, faith leaders, community leaders, or ask the families directly, “who do you trust the most? Who do you look to for guidance?” Ask if it’s ok to reach out to that person, and then you can bring those people in the conversation for assistance. The more everyone is educated about what hospice is and what it can provide, the more informed the decision can be for everyone involved. 

Death

It may seem obvious, but views on death across cultures can vary wildly. Not just views, however, but the topic itself. Many cultures view speaking about death at all as frowned upon – thinking it can hasten death or make it worse. There’s also the belief that it’s up to God, not a doctor, to decide when life will and should end. 

What some hospice professionals do to honor this belief is avoid talking about death and focus conversations around what is most important to patients and their families. They ask how the team can acknowledge and uplift life as time is getting shorter. Who would they like around them? What does quality of life look like for them as they may become sicker? This way the conversation of death can be circled without a questioning of beliefs, and focusing, as hospice care always does, on the patient and their quality of life.

No matter the patient’s cultural background, education about hospice care and what it provides should be a key part of the conversation. Making sure everyone involved knows what options are provided, and that they can trust the team to do everything for the patient and their caregivers. At Heart to Heart, we make sure everyone on our team takes cultural competency training so they can better understand how different cultures view medical professionals, death, and the process of dying. This helps them be more prepared to navigate difficult conversations no matter the background. Because hospice care is about treating the entire patient, and not just their symptoms.