Welcome to the second installment of our "Ensuring Health Equity: Closing the Gap" blog series, where we delve into the critical topic of Advance Care Planning (ACP). This post is designed to spotlight the importance of ACP for everyone, particularly for those managing chronic or life-limiting illnesses. Through insights from the comprehensive Health and Retirement Study (HRS), which reflects the experiences of over 20,000 older adults in the U.S., we aim to give you a clear view of who typically engages in ACP and the significant racial and ethnic disparities in both engagement and completion of ACP documents.
In this discussion, we will explore the essential role that ACP plays in ensuring that your healthcare aligns with your values and preferences, especially when you might not be able to communicate your wishes yourself. We'll provide a detailed look at the characteristics of those who are most likely to engage in ACP, examine the challenges and barriers faced by minority groups, and offer tools to help you evaluate what might be holding you back from initiating or completing your own ACP. By understanding these dynamics, you can take proactive steps towards making informed decisions about your healthcare, ensuring peace of mind for both you and your loved ones.
Why engage in advance care planning (ACP)?
Advance Care Planning (ACP) is an essential process, particularly vital if you are dealing with a chronic, life-limiting illness. These conditions often follow a trajectory of gradual health decline, occasionally marked by sudden deteriorations. It is important to remember that having ACP discussions in an outpatient setting isn’t about making premature decisions on potential treatments in hypothetical scenarios. Instead, it's about identifying a surrogate decision-maker and articulating your values, which can guide in-the-moment decisions later, ensuring that your choices are respected even when you might not be able to communicate them yourself.
Generally, ACP involves communicating your healthcare preferences while you are still physically and cognitively able to do so; and then formally documenting your choices. This process is a crucial step towards achieving a "good death," defined by receiving treatment that aligns with both your wishes and those of your loved ones. The overarching goal of ACP is to empower you to "live well and die well," in your preferred setting, upholding your Right to Choose.
The significance of ACP has grown, especially during the COVID-19 pandemic, when many have faced the need to make quick, critical medical decisions. This can be particularly challenging if cognitive impairments are present or if isolation from family prevents collaborative decision-making. By engaging in ACP, you ensure that your healthcare preferences are understood and honored, reflecting your Right to Care. Furthermore, ACP is not set in stone; it adapts with your changing circumstances, preserving your Right to Change as your health needs evolve. This dynamic process supports your autonomy and dignity throughout your healthcare journey.
What are the ACP insights from the Health and Retirement Study (HRS)?
The Health and Retirement Study (HRS) is a vital resource that has provided extensive data on retirement and the health transitions faced by older adults in the United States. With over 20,000 participants representative of the U.S. older adult population, it offers a comprehensive look at the issues that matter most to seniors like yourself. The HRS results have historically provided researchers, medical professionals, and the healthcare system with invaluable information on what is important to seniors, helping to shape better healthcare policies and practices that directly affect your life and well-being. HRS is an important resource providing a collective voice for older adults.
Three Key Questions Addressing Advance Care Planning
Since 2012, HRS has included specific questions about Advance Care Planning (ACP), yielding valuable insights into how your peers approach end-of-life care decisions. The study asked participants three specific ACP questions about their involvement in advance care planning activities that can provide you with valuable insights.
Goals-of-Care Conversations: This question aims to determine if you have engaged in discussions about your care preferences in the event of serious illness.
“Have you discussed with anyone the care or medical treatment you would want to receive if you were to become seriously ill?”
Living Will: This query checks if you have documented your healthcare wishes in a living will, ensuring that your preferences are known even if you become unable to communicate them.
“Have you written instructions about the care or medical treatment that you would want to receive if you cannot make those decisions yourself?”
Durable Power of Attorney: This question assesses whether you have legally appointed someone to make healthcare decisions on your behalf if you are no longer capable.
“Have you completed a legal arrangement for a specific person(s) to make decisions about your care or medical treatment if you cannot make those decisions yourself?”
Classifications of Responses
Based on responses to these questions, researchers in one analysis categorized participants into four groups to better understand the results. This structure highlights the different levels of engagement individuals have with ACP and points to the diverse approaches people take towards planning for their healthcare needs.
No ACP: Participants who reported neither having goals-of-care conversations nor possessing any advance directive (i.e., living will or durable power of attorney).
Informal ACP Only: Participants who had goals-of-care conversations but did not have any form of documented advance directives.
Formal ACP Only: Participants who did not report having goals-of-care conversations but had completed at least one form of advance directive.
Both ACP Types: Participants who reported both having goals-of-care conversations and possessing one or more advance directives.
Why HRS Results Matter
Understanding these classifications and the questions that frame them is crucial for interpreting the statistics presented in the HRS findings and researcher insights. By familiarizing yourself with these aspects of the HRS, you can better understand the landscape of ACP among older adults in the United States and reflect on your own or your loved ones’ preparedness for future healthcare decisions. This knowledge empowers you to take proactive steps to ensure that your healthcare preferences are clearly articulated and respected, no matter what the future holds.
Who typically participates in advance care planning?
As you review the scientific findings presented here, it's important to understand that your engagement can be influenced by various personal and cultural factors. Your perceptions of mortality and readiness to address end-of-life issues play a significant role. You might find that acknowledging the reality of death can spur you to make these essential preparations. Conversely, the anxiety about facing the end of life soon might lead you to delay or avoid ACP.
Your cultural background can also deeply impact your approach to ACP. As an older adult, whether you identify as Black, Hispanic, or White, you face different health outcomes and risks of chronic illnesses, which can affect your views on and participation in ACP. These disparities in health outcomes, combined with diverse family bereavement experiences, contribute to varied levels of knowledge and attitudes towards future survival among different racial and ethnic groups.
Furthermore, the quality and frequency of your goals-of-care conversations with healthcare providers about the progression of any illness you might have are crucial. These discussions can significantly shape your willingness and ability to engage in ACP. Understanding these dynamics helps highlight why different people, influenced by their backgrounds and health situations, might choose to participate in ACP at different rates or in different ways.
It’s essential for you to consider these factors as you think about your own advance care planning. Reflecting on your personal experiences, cultural background, and health status can help you navigate your ACP decisions more effectively, ensuring that your healthcare preferences are understood and respected, no matter what the future holds.
Demographic Overview of Advance Care Planning Participation
It is also beneficial to understand the broader landscape of who typically engages in this important process. ACP participation is influenced by a variety of demographic, socioeconomic, and health-related factors, which can either encourage or hinder individuals from initiating and completing advance directives. Research shows that certain demographic groups are more likely to participate in ACP, here are a few notable details:
Age and Gender: Older adults, particularly women and those over the age of 85, are 1.5 times more likely to engage in ACP.
Marital and Parental Status: Those who are married or have children are generally more involved in ACP than their unmarried or childless counterparts.
Education and Communication: Individuals with at least a high school education and those who have someone to discuss personal matters with are twice as likely to engage in ACP.
Health Status: People with poorer health or multiple health conditions are more inclined to participate in ACP, likely because their health status prompts more frequent interactions with healthcare systems where ACP can be initiated.
Wealth and Homeownership: Wealthier individuals and homeowners often engage in estate planning to protect their assets, which frequently includes health-related ACP.
Access to Information: Internet access has emerged as an independent predictor of advance directive possession, suggesting that the ability to access information plays a critical role in encouraging ACP.
Living Arrangements: Interestingly, living with a partner or children is associated with a lower likelihood of having written end-of-life instructions, possibly due to perceived support systems that may reduce the perceived urgency for formal documentation.
Regional Variations: Logistic regression analysis reveals that older adults living in the Western and Midwestern United States are more likely to engage in ACP than those in the South.
Nationality Differences: There are significant differences in ACP engagement among racial and ethnic groups, with foreign-born individuals less likely to be involved in ACP compared to their U.S.-born counterparts.
Retirement and Disability: The transition into retirement or the onset of a disability noticeably prompts the completion of advance directives. This suggests that such life changes are key moments when individuals consider their long-term health care preferences.
By understanding these characteristics, you can better appreciate how various elements of your identity and situation might influence your approach to ACP. This knowledge not only prepares you to make more informed decisions about your own advance care planning but also helps you understand how your peers might be navigating similar decisions. As we delve into the specifics of ACP activity, remember that these broader insights provide a foundation for recognizing the importance of proactive health care planning, ensuring that your wishes are respected and honored.
What are the health equity disparities in ACP?
If you belong to a minority community, it’s important to recognize that racial and ethnic disparities in advance care planning may affect your experience and decisions regarding end-of-life care. Data indicates that there are significant differences in how various racial and ethnic groups approach ACP. These disparities are a big part of health equity discussions amongst healthcare providers across the country.
Research shows that Whites are significantly more likely to have completed ACP compared to Black and Hispanic individuals. Specifically, Whites are about 20% more likely than Blacks and 40% more likely than Hispanics to report that they have plans to complete ACP. This disparity often stems from a variety of factors, including different historical and cultural experiences with the healthcare system, which can influence trust and perceptions of medical care.
Analyses suggest that when Black and Hispanic individuals engage in end-of-life planning, they tend to do so much closer to the time of death—on average, 19 months closer—compared to their White counterparts. This delay can limit the effectiveness of ACP in ensuring that end-of-life care aligns with your preferences and values.
The Lack of Minority Engagement in Advance Care Planning
Recent analysis of the three HRS ACP questions highlight considerable disparities in ACP activities among racial and ethnic minorities. The data reveals that Black and Hispanic older adults are notably less likely to engage in both informal and formal ACP compared to their White counterparts. Specifically:
Black respondents were 77% more likely and Hispanic respondents 76% more likely than White respondents to report having no ACP.
Hispanic individuals were 45% more likely to engage only in informal ACP, while Black respondents were 58% more likely, to engage only in formal ACP.
Both Black and Hispanic groups were 26% less likely than White individuals to have engaged in both informal and formal ACP.
These disparities are consistent across various U.S. regions. For instance, Blacks in the Northeast, Midwest, and South, and Hispanics in the Northeast and the West, show lower levels of ACP engagement compared to Whites.
Several factors have been identified as possible contributors to the lower rates of ACP among these groups:
Cultural Differences: There may be varying perceptions and discussions around healthcare and end-of-life planning within different cultures.
Access to Healthcare Resources: There might be a lack of access to healthcare resources that facilitate ACP discussions and documentation.
Historical Mistrust: A historical mistrust in medical systems could deter engagement in formal health planning processes.
Although goals-of-care conversations, a key component of informal ACP, are relatively common across all groups, the transition to formal documentation—such as living wills and durable powers of attorney—remains notably insufficient. This gap in formalization is particularly pronounced among Black and Hispanic populations, where crucial end-of-life directives are significantly less likely to be officially recorded.
The Problem of Lower ACP Document Completion Rates Among Minority Groups
The failure to formalize end-of-life wishes can have big implications, particularly seen in the stark disparities in Advance Directive (AD) completion rates among racial and ethnic minorities. For example:
Only 18.0% of Hispanic and 15.0% of Black decedents had completed an AD, compared to 51.7% of White decedents.
Black decedents who completed an AD were significantly more likely to opt for prolonged care, with 23.8% choosing this option compared to 13.3% of Hispanics and merely 3.3% of Whites.
These differences are not just numbers; they reflect deeply ingrained disparities that affect the kind of care you or your loved ones might receive during critical times. Moreover, deeper analysis indicates that Blacks had 75% lower odds, and Hispanics had 70% lower odds of completing an AD compared to their White counterparts.
How might your ACP perspectives impact your engagement?
It’s completely normal to feel hesitant about engaging in advance care planning, and you're certainly not alone in this. In fact, depending on the study, only about 25% to 33% of Americans have documented their advance care plans, which means most people haven’t taken this step yet.
You might be putting off ACP for the future, thinking it’s something you’ll need only when you face a medical crisis. However, life can be unpredictable, and having a plan can relieve a great deal of stress and uncertainty for both you and your loved ones. Consider how a recent hospital stay or a health scare might suddenly make ACP seem more pressing.
Many people believe that because they are currently healthy, they don’t need to worry about ACP just yet. But have you ever considered how your views on health might be shaping your approach to planning? If you’ve seen a loved one struggle without an advance care plan, you might understand the importance of having one.
Questions to Ask Yourself About Why You Haven’t Done ACP
To better understand what might be holding you back or what could motivate you to take action, ask yourself the following questions:
Have I been avoiding ACP because I feel it’s not immediately necessary?
Does the thought of discussing my own mortality make me uncomfortable?
Am I worried that I don’t have enough information to make these decisions?
Could I be assuming that my loved ones already know my wishes?
Have I experienced a situation where ACP would have been helpful for someone close to me?
Do I feel I haven’t gotten around to it because it seems too complex or time-consuming?
Reflecting on these questions can help you pinpoint the reasons behind your hesitation and could be the first step in moving toward a plan that aligns with your values and wishes.
Understanding Common Barriers
It's helpful to recognize that barriers such as discomfort with the topic, lack of information, or simply not finding the right time are very common. In fact, when surveyed:
56% of people haven’t gotten around to it.
23% avoid the discussion due to discomfort.
21% don’t see it as necessary at the moment.
Motivations for Completing ACP
If you have considered having an advance care planning conversation, think about what influenced your thoughts:
Is it the importance of ensuring your wishes are followed?
Was it prompted by a health event, either yours or a loved one’s?
Did a healthcare provider recommend it?
Taking the First Step
These insights and self-reflections are based on findings from the University of Michigan’s Health and Retirement Study and the National Poll on Healthy Aging. Understanding these aspects can empower you to take control of your healthcare decisions, ensuring that your care aligns with your preferences, no matter what the future holds. This proactive approach supports your right to choose, care, and change, fostering a sense of preparedness and peace of mind. Why not take a moment now to begin this vital conversation?
To start or continue to build your knowledge of advance care planning, we suggest you review these GeriScope blog posts:
Cost to complete advance care planning should not be an issue. If you are a traditional Medicare or Medicare Advantage enrollee, ACP is a covered benefit. Even better you can use MyDirectives, a free online service that will walk you through all the elements of the advance care planning process, document your choices, and then securely store the documents in an cloud storage database that is always accessible to your doctors and loved ones.
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