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  • Writer's pictureCindy Davis

How Your Race and Ethnicity May Shape End-of-Life Choices

Updated: Jun 4


Image of diverse group of senior citizens with hands in agreement

Making end-of-life care decisions can be emotional and daunting, especially when personal beliefs, cultural backgrounds, and limited knowledge intersect. Your perspectives and experiences not only shape how you approach these decisions but may also create invisible barriers that prevent you from fully exploring and understanding your options, potentially leading to futile treatments that negatively impact your quality of life.

 

Here, we will explore the factors that may be holding you back from having meaningful conversations about the care you want towards the end of your life. Whether it’s a lack of clear information, cultural beliefs, or the role of your family in making decisions, recognizing these influences is the first step towards ensuring your wishes are respected. We aim to empower you with knowledge and encourage you to take control of your care on your terms.

Overcoming Knowledge Gaps to Informed End-of-Life Decisions

A lack of information can create blind spots in your understanding of available end-of-life care options. Many individuals in the Black, Hispanic, and Asian communities are less familiar with advance care planning (ACP) compared to their White counterparts, which directly impacts their engagement. For instance, research shows that Blacks are about three times more likely than Whites to have never considered completing advance care planning. Hispanics are two times more likely than Blacks and eight times more likely than Whites to be completely unaware of ACP.

 

Furthermore, if your family or community has limited exposure to making life-sustaining treatment decisions due to geographic separation or financial constraints, you might find it challenging to initiate conversations about your own end-of-life preferences. For example, a study of Latino patients revealed that minimal exposure to ageing and dying among relatives—often due to immigration or financial issues—limited their understanding and engagement in future care planning. However, those with experience caring for an unwell relative were often more receptive to discussing their own end-of-life care.

 

The general lack of awareness and understanding about ACP, palliative services, and hospice care can leave you uncertain about the aims, options, and procedures involved. This uncertainty may also extend to the legal aspects of ACP, such as understanding the role and authority of each participant in the decision-making process, and whether decisions once made can be altered later.

 

To eliminate blind spots, consider exploring several other GeriScope posts that detail ACP, palliative services, and hospice care. These resources are designed to equip you with the knowledge needed to make informed decisions.



Cultural and Religious Influences on End-of-Life Decisions

Minority person holding aa religious text

Your cultural background and religious beliefs play a big role in shaping your approach to advance care planning and end-of-life care choices. Studies show that Black and Hispanic individuals are more likely to receive life-prolonging care even when the chances of recovery are minimal, driven by cultural and religious norms that value the extension of life as a manifestation of faith. More specifically, Blacks are more likely to believe that their health outcomes are in God's hands. This religious perspective often leads to a lesser perceived need for ACP, as many feel that the timing and nature of one’s death should be left to divine will.

 

Additional studies suggest that this belief that God determines the time of death is a key reason why Black and Hispanic individuals may be less likely to complete advance directives compared to their White counterparts. For example, evangelical and Catholic communities often show lower engagement in advance care planning, influenced by the belief that such planning might presume the timing of death, which is seen as the domain of the divine. The complex relationship between religiosity and ACP shows that these decisions are not just medical but are influenced by deeper spiritual and cultural convictions.

 

In many Asian cultures, the diagnosis of a terminal illness often strengthens the commitment to care within the family, viewed not just as a duty but as an integral part of familial honor and responsibility. So, engaging in advance care planning or considering hospice care might be seen as shirking these familial duties. Such perceptions can lead to reluctance to utilize hospice services, as doing so may be interpreted as an abandonment of a family member in their time of greatest need, potentially bringing shame to the family.

 

While you may not control the specifics of your illness or the timing of your death, you can have a say in the ways your cultural and religious beliefs determine how and where you might spend your final days. That’s why exploring palliative care options and understanding hospice services as part of goals of care conversations can allow you to make end-of-life decisions that not only align with your cultural and religious values but also enhance your quality of life.

 

For all racial and ethnic communities, it’s essential to recognize that advance care planning is not about choosing the time of your death or shirking your responsibilities, but about detailing how you wish to be treated when you might not be able to make your voice heard. This planning is about making sure the care you receive aligns with your values and is managed by someone you trust, should you be unable to make decisions yourself. Such discussions are especially crucial for anyone with strong views on how their end of life should be handled, including those within the pro-life community who advocate strongly for preserving life through all available means, even if unconscious. The best way to ensure the care you receive aligns with your religious convictions is to document what you want in an advance directive and designate a healthcare agent.

Role of Family in End-of-Life Care

Muktigenerational Asian family sharing a meal

Considering end-of-life care within minority communities where collective decision-making is deeply ingrained can be complicated. The integration of family perspectives in these discussions is often seen not just as a preference but as a crucial component of the decision-making process.

 

Yet, one of the biggest challenges is the widespread reluctance to initiate discussions about end-of-life care. Interestingly, 90% of respondents in a national survey acknowledged the need to discuss end-of-life care with loved ones but less than 30% had actually engaged in such conversations. Further, a majority (77%) of respondents felt that their loved ones would support them in completing ACP. These disparities suggest a hesitancy that may be compounded by a lack of knowledge about what ACP entails and the benefits it provides, not only to the individual but to the family as a whole.

 

Many in the Black and Hispanic communities might delay or avoid formalizing end-of-life preferences to prevent causing distress among family members. Older Black adults, for instance, often prefer not to burden their children with distressing conversations about end-of-life care, choosing instead to rely on trusted family members or clergy to communicate their wishes informally. This approach, while respecting the emotional well-being of family members, risks leaving significant decisions open to interpretation, which can lead to outcomes that might not align with the individual’s original intentions.

 

To overcome these barriers, it is crucial for you to take proactive steps. Initiating these difficult but necessary conversations can greatly alleviate the burden on your family by ensuring that your healthcare preferences are clearly understood and respected. Discussing end-of-life options openly allows for a comprehensive understanding among all family members, which is particularly important in cultures that value collective decision-making.

 

Encouragingly, the majority of surveyed individuals believed their family members would support their decision to engage in ACP, with 72% stating they would complete ACP if their loved ones expressed a desire for it. This demonstrates a readiness within families to honor such decisions when they are made known and also provides your family with clear guidance, reducing the emotional and logistical stress often associated with end-of-life care decisions.

Making Choices Between Longevity and Quality of Life

Two images of seniors contrasting longevity with quality of life decisions

End-of-life decision making requires evaluation of the trade-offs between longevity and quality of life. For many in Black and Hispanic communities, there's a significant emphasis on extending life, often regardless of the potential decline in quality of life. This perspective can sometimes overshadow other vital considerations that might better align with your personal values and overall satisfaction.

Understanding the Trade-offs Between Longevity and Quality of Life

As we have seen, choosing to extend life at any cost is a decision deeply rooted in personal and cultural values. However, it's important to reflect on what living longer might entail regarding your overall quality of life. Medical interventions meant to prolong life often come with meaningful consequences, which might include:


  • Prolonged suffering. For example, aggressive treatments like chemotherapy can extend life but may also lead to severe side effects such as chronic pain, fatigue, and nausea, significantly diminishing daily enjoyment and comfort.

  • Reduced mental awareness. Treatments aimed at prolonging life, especially those involving intensive care, can sometimes result in a reduced state of consciousness. Medications like heavy sedatives can keep you alive but might prevent meaningful interaction with your surroundings and loved ones.

  • Limited time spent with friends and family. Hospital stays and frequent trips to receive medical treatments can take away from precious moments that could otherwise be spent at home or in more comforting environments with loved ones.

  • Increasing burdens on loved ones. The physical, emotional, and financial strain of extended medical care can significantly impact your family and caregivers, sometimes leading to caregiver burnout and financial hardship.


In this context, understanding palliative services and hospice care may be beneficial in decision making. These care options focus on improving quality of life by managing pain and other distressing symptoms of serious illness. Palliative care can be provided alongside curative treatment, helping you manage symptoms while still pursuing treatments aimed at prolonging life. Hospice care, on the other hand, is generally reserved for when curative treatment is no longer expected to be beneficial, focusing entirely on comfort and quality of life in the final months or days.

 

By considering the trade-offs in light of your current prognosis, you can better weigh the benefits and drawbacks of pursuing extensive medical interventions. Understanding these trade-offs helps ensure that any decision to extend life aligns not just with the goal of longevity but also with maintaining a dignified and meaningful quality of life according to your values.

Subjective Life Expectancy (SLE) and Its Impact

Your subjective life expectancy or how long you think you will live may also be influenced by personal and cultural perceptions. Generally, studies indicate:


  • Black older adults often report optimistic survival expectations, despite statistically shorter life expectancies.

  • Hispanics may exhibit more pessimistic survival expectations, even though they have a survival advantage over their peers.

  • With the longest life expectancy of any group, Asians philosophy reflects an acceptance of death’s inevitability and commitment to stay positive.

 

More specifically, Black individuals display the highest optimism about survival, with 21% being completely certain of living another decade—significantly higher than both Whites (5%) and Hispanics (9%). In stark contrast, Hispanics exhibit the most pessimistic outlook, with 20% believing they have no chance of surviving the next ten years, approximately double the rate of Whites and Blacks. Additionally, a notable portion one in five respondents uncertain about their longevity, with Hispanics more likely than Whites to report this uncertainty.

 

These perceptions influence when and how individuals engage in advance care planning. If you believe you have many years ahead, you might delay ACP, focusing instead on immediate goals. Conversely, if you perceive your time as limited, the urgency to settle your medical and personal affairs becomes more pressing.

Getting Your Care on Your Terms

Ultimately, the decision to prioritize longevity or quality of life in your care should reflect your deepest values and life goals. By becoming more informed about the implications of various medical interventions and the realities of end-of-life care, you can make choices that ensure your final years, months, or days are lived on your terms. This empowerment through knowledge and planning allows you to approach the end of life not with fear, but with a sense of peace and dignity, knowing that your wishes will be honored in accordance with your cultural perspective.

 

To truly honor your beliefs and ensure your care is on your terms, it's vital to learn about and discuss palliative and hospice care options with your healthcare providers. Advance care planning is a powerful tool for exploring these options, discussing them thoroughly with your medical team and loved ones, and documenting your preferences in a way that they can advocate for your wishes should you become unable to communicate them. This approach helps you avoid futile curative care that may diminish your quality of life, while ensuring that your end-of-life care respects your cultural and spiritual values.

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