Welcome to our series on Ensuring Health Equity: Closing the Gap. At the core of this exploration is a fundamental belief that when it comes to the last chapters of life, everyone deserves the right to choose, the right to care, and the right to change. These rights are paramount, especially for marginalized and underserved communities.
To kick off this series, we'll delve into the latest data and forecasts from the Centers for Disease Control (CDC), the U.S. Census Bureau, Centers for Medicare & Medicaid Services (CMS), and Health Affairs for seniors aged 65 and older. This data sheds light on the demographic trends, racial and ethnic diversity, and the economic aspects of elder care. By providing this important background on the older adult population—especially focusing on minorities—we aim to equip you with the knowledge to make informed decisions that honor your rights to choose, care, and change.
Demographic Trends in the Older Adult Population 2022-2060
As of 2022, the total U.S. population has reached approximately 333 million, with a modest annual growth rate hovering around 1%.
Notably, the demographic landscape is shifting dramatically, particularly within the older adult population as illustrated in Figure 1. The last decade witnessed the most significant and fastest growth of the population aged 65 and over since the period from 1880 to 1890. By 2020, this age group had expanded to 55.8 million individuals, accounting for 16.8 percent of the total population. This surge is largely attributable to the aging Baby Boomers, those born between 1946 and 1964, who began turning 65 in 2011.
Current projections anticipate that the number of Americans aged 65 and older will climb from 58 million in 2022 to 89 million by 2060, marking a 54% increase. Consequently, the older population share within the total U.S. demographic is forecast to rise from 17% to 24%.
Racial and Ethnic Diversity Among Older Adult Population 2022-2060
As we move towards 2060, the elderly America landscape is set to undergo major changes, particularly in terms of racial and ethnic composition. Over the next four decades, the growth rate of minority elders will substantially exceed that of their White counterparts. Specifically, the population of older Whites is anticipated to see a relatively modest increase of 16%. In stark contrast, the number of minority elders is expected to surge dramatically—Hispanics by approximately 3.7 times, Asians by 3.1 times, and Blacks by 2.6 times their current numbers.
By 2060, projections estimate that there will be around 18 million Hispanic, 13 million Black, and 7.6 million Asian older adults aged 65 and over as shown in Figure 2. These groups will constitute about 44% of the total elderly population in 2060. This shift underscores the growing need for culturally sensitive end-of-life care and conversations.
Older Adult Death Statistics with Focus on Racial and Ethnic Diversity
The mortality landscape among older adults in the U.S. has evolved. Today, most people live into old age but often suffer from chronic illnesses for an average of two to four years before death, facing these challenges without a reliable caregiving system. This shift underscores the importance of understanding the trends and factors influencing elder mortality, particularly as they relate to racial and ethnic diversity.
Trends in Elder Mortality Over the Last Decade 2013-2022
Since 2013, the annual number of deaths has been on an upward trajectory, primarily driven by an aging population. Annual deaths rose from approximately 2.60 million in 2013 to 2.85 million in 2019.
The year 2020 saw the largest annual increase in deaths in the last 100 years—a 19% rise from 2019, primarily due to the pandemic. Between 2020 and 2022, annual deaths exceeded 3.3 million, peaking at nearly 3.5 million in 2021. This was a stark departure from the norm, where the average annual increase from 2010 through 2019 was 1.6%, or about 43,000 deaths.
According to 2022 National Center for Health Statistics, the U.S. registered 3,279,857 resident deaths—184,374 fewer than in 2021. The decline resulted in an extension in life expectancy at age 65 to 18.9 years, up by 0.5 year from 2021.
Increasing Prevalence of Chronic Conditions
Genetics, lifestyle, and gender significantly influence your likelihood of developing chronic diseases. According to research by the National Council on Aging (NCOA), an overwhelming 94.9% of adults aged 60 and older are diagnosed with at least one chronic condition, and nearly 80% have two or more chronic conditions, making the treatment of chronic illnesses a dominant part of their healthcare experience.
Obesity, another significant health concern, affects about 42% of adults aged 60 and older. This condition not only contributes to discomfort and mobility issues but also substantially increases the risk of developing other serious health problems, including heart disease, type 2 diabetes, and various cancers.
The 10 most common maladies that plague the U.S. older adult population include:
Hypertension (High Blood Pressure) - 60%
High Cholesterol - 51%
Obesity - 42%
Arthritis (including various musculoskeletal pain syndromes) - 35%
Ischemic/Coronary Heart Disease - 29%
Diabetes - 27%
Chronic Kidney Disease - 25%
Heart Failure - 15%
Depression - 16%
Alzheimer’s Disease and Dementia - 12%
These statistics highlight the alarmingly high prevalence of chronic conditions among older adults, which poses substantial challenges for healthcare systems and impacts the quality of life for this population. Each not only affect the health and mobility of seniors but also have significant implications for their end-of-life care. Managing these diseases requires a coordinated approach to healthcare that includes regular monitoring, medication management, lifestyle adjustments, and potentially long-term treatment plans.
The Growing Impact of Multimorbidity on Elder Health
Multimorbidity—the presence of two or more chronic conditions in an individual—is a growing concern in the health of older adults. This complex health issue is linked to several adverse outcomes, including increased mortality, a decline in quality of life and functional status, higher utilization of health services, and a significant rise in healthcare costs.
Recent analysis projects a significant increase in the prevalence of chronic conditions and multimorbidity among the aging population. By 2035, it is estimated that 36% of adults aged 50 and older will have at least one chronic condition, with this figure expected to rise to 48% by 2050. Simultaneously, the percentage of adults experiencing multimorbidity is predicted to grow from 3.7% to 5.0% in the same period.
The bulk of individuals suffering from either a single chronic condition or multimorbidity fall within the 60 to 79 age range. However, the most dramatic increases are projected among those aged 80 years and older, where the prevalence of one chronic condition is expected to surge by 244%, and multimorbidity by 203%, from 2020 to 2050.
Causes of Death Trends 2013-2022
In 2022, the Centers for Disease Control and Prevention (CDC) reported that 3.28 million people died in the U.S., with the top ten causes accounting for 73% of all deaths. Among these, heart disease and cancer remain the leading causes, though their incidence has decreased due to factors such as reduced smoking rates, better cancer screenings, and improved treatments for cardiovascular issues. However, unintentional injuries, including car accidents, falls, and accidental poisonings (notably drug overdoses), have returned to the third leading cause of death spot when adjusting for COVID-19. The causes of death from distribution for adults aged 65 and older from 2013-2022 is illustrated in Figure 3.
When viewed over the last decade the distribution of cause of death is illustrated in Figure 4 demonstrating that heart disease and cancer represent nearly 60% of the top 12 causes of death.
Racial and Ethnic Disease Prevalence
Dying is an inevitable part of life, but healthcare needs at the end of life can vary significantly across different ethnic and racial groups. End-of-life care is not limited to managing pain and symptoms; it also encompasses psychological, social, spiritual, and practical support. In the United States, the growing diversity of the aging population highlights the urgent need for end-of-life care systems that are equipped to meet the unique needs of diverse groups. A summary of the 2022 top 16 causes of death by race and ethnicity for adults 65 years of age and older is charted in Figure 5.
In the U.S., non-White races and Hispanic ethnicity are often linked with adverse health exposures, poorer access to healthcare, and experiences of discrimination within the healthcare system due to systemic racism. Such disparities meaningfully affect the quality of healthcare received and, by extension, the quality of end-of-life care.
For instance, the Dartmouth study on the impact of COVID-19 revealed distinct patterns in disease prevalence among different racial and ethnic groups. White patients generally exhibited higher rates of cancer, heart disease, and dementia compared to their Hispanic or Black counterparts. Conversely, Black patients were found to have higher rates of conditions such as obesity, diabetes, hypertension, renal failure, and asthma than White or Hispanic patients. These trends were similarly reflected among the deceased, indicating that racial and ethnic disparities persist throughout the lifecycle and even into the patterns of end-of-life health issues.
Place of Death Trends from 2018-2022
Experiencing a "good" death often conjures an image of passing away peacefully at home, surrounded by loved ones, as frequently depicted in obituaries. However, the reality of dying at home can be far more complex and demanding. Family caregivers, often unprepared, find themselves tasked with managing severe symptoms such as pain, agitation, and dyspnea, administering medications, and providing intimate personal care to bedbound patients. These are tasks typically handled by trained clinicians in other care settings. As the realities of dying at home become apparent, some patient and family preferences for a home death may change.
Older Adult Place of Death Statistics 2018-2022
The landscape of where Americans die has seen significant changes in recent decades. By 2017, 31% of Americans died at home, marking the first time in many years that home became the most common site of death. This trend has continued, with the proportion of older adults (ages 65 and older) dying at home increasing from 32% in 2018 to 36% in 2022 (See Figure 6).
Understandably the pandemic impacted these trends, especially in hospital deaths among older adults. In 2021, hospital deaths peaked at 878,258, accounting for 33% of all deaths. By 2022, this figure had declined to 31%. Over the same period, deaths in nursing homes decreased from 25% to 21%. Interestingly, the proportion of older adults dying in hospice facilities has remained stable at about 8% over the last five years.
Individuals with higher incomes, in-house support, or those suffering from illnesses like cancer have a higher likelihood of dying outside of a hospital setting. Moreover, people covered by multiple insurance plans or enrolled in a Medicare HMO plan are more likely to utilize non-hospital-based end-of-life care options such as hospice or nursing home care. This trend is attributed to more comprehensive insurance coverage, different financial incentives, and better affordability of out-of-hospital, end-of-life care.
Cultural Perceptions Versus the Reality of Home Death
The notion that a good death occurs at home is deeply rooted in our cultural and social history. Surveys show that many patients express a preference for dying at home, though these preferences can vary based on patient characteristics, including race and ethnicity. While many physicians advocate for home death as aligned with high-quality end-of-life care, this perspective has started to be questioned by palliative care clinicians and others who recognize the complexities involved.
Alternative locations for death, such as freestanding inpatient hospice facilities and skilled nursing facilities (SNFs), offer crucial benefits. These settings provide continuous nursing and personal care, which are essential for managing the physically and emotionally demanding needs at the end of life, such as incontinence or agitated delirium. In these inpatient settings, medications can be rapidly adjusted or changed to effectively control symptoms, often more efficiently than in a home setting.
Over the past two decades, hospital-based palliative care has also seen substantial growth, although disparities in access remain significant. Hospitalized patients increasingly have the option to choose comfort-focused end-of-life care, sometimes within dedicated palliative care or hospice units. These settings offer access to palliative interventions, such as transfusions and high-flow oxygen, that are rarely available in non-hospital environments. Bottom line, it’s important to understand all your options and make the choice that work for you and your loved ones.
2022 Racial and Ethnic Variations in Place of Death
The incongruence between preferred and actual place of death in the United States underscores a wide gap in end-of-life care, particularly among racial and ethnic minorities. Despite a clear preference among many older Blacks to die at home or in hospice care, they are more likely to die in a hospital setting. This discrepancy highlights the need for healthcare providers to have open discussions with patients and their families about end-of-life preferences and the realities of fulfilling these preferences.
In 2022 data shown in Figure 7, the disparities in place of death among racial and ethnic groups were evident. A higher proportion of minority older adults—39% of Asians and 37% of Blacks and Hispanics aged 65 and older—died in hospitals compared to 29% of Whites. Conversely, White Americans were more likely to die in nursing homes (22%), compared to 15% of Black and 12% of Hispanic and Asian populations.
Hospice utilization also shows large racial and ethnic disparities. In 2022, hospice facility use was highest among Whites at 8%, compared to 6% for Black and Hispanic older adults, and only 4% among the Asian community. Despite the majority of hospice care occurring in the patient's home (56%) or in a nursing facility (42%), the lower utilization rates among minorities indicate potential barriers to successfully accessing support services.
Racial and ethnic differences in end-of-life care are influenced by more than just income and education. For instance, Blacks and Hispanics typically live in larger households with stronger social networks, providing an infrastructure that could support in-home death. Additionally, these communities often emphasize collective decision-making and family-oriented care, factors that might reduce reliance on hospices and other long-term care services. However, despite these supportive community structures, many minorities still end up dying in hospital settings and receiving overly intensive care in the last six months of life.
Economic Challenges of Elder Care
The financial burden of healthcare also varies significantly across different diseases and populations. The costliest chronic conditions include acute myocardial infarctions (heart attacks), lung cancer, strokes, heart failure, and colorectal cancer. Diagnoses of these serious or chronic conditions are associated with higher healthcare spending across all adults, but the impact is even more pronounced among those over 65.
Choosing to die at home can also have economic implications. Home deaths tend to reduce healthcare costs by avoiding expensive hospital stays. However, this often shifts financial burdens to families through unpaid caregiver labor and out-of-pocket expenses. Aware of these dynamics, payers frequently shape payment policies to discourage hospital deaths.
National Health Expenditures 2022-2031 and Predicted Insolvency by 2027
National health expenditures (NHE) in the United States are on a rapid upward trajectory, with profound implications for the federal budget and the overall economic landscape. According to projections from CMS, the NHE, encompassing both public and private healthcare spending, is expected to rise from $4.4 trillion in 2022 to an estimated $7.2 trillion by 2031. This increase equates to an annual growth rate of 5.4% over this period, eventually accounting for nearly 20% of the nation’s gross domestic product (GDP) by the end of the decade.
This surge in healthcare spending is driven by several factors, including an aging population that necessitates more healthcare services, advancements in medical technology, the impact of inflation, and rising labor costs within the healthcare sector. For instance, individuals aged 65 and older typically spend three times more on healthcare than those of working age and five times more than children.
The financial implications of this growth are stark. Government expenditures on healthcare are projected to increase from $1.9 trillion in 2022, representing 46% of total healthcare spending, to $3.3 trillion, or 49% of healthcare spending, by 2031. This increase is largely attributed to the escalating costs associated with Medicare and Medicaid, programs that are critically important for the older and low-income populations.
One of the most concerning forecasts is the projected insolvency of Medicare by 2027. In recent years, the Medicare trust fund has been depleting its reserves, previously bolstered by surpluses, to cover deficits. To address this looming fiscal challenge, trustees have suggested that the Medicare payroll tax rate might need to be raised from the current 2.9% to 3.7% or that there would need to be a permanent reduction in Part A spending.
Projected Medicare insolvency underscores a broader necessity: the need for effective cost control measures within our healthcare system. As healthcare costs continue to climb, they pose not just a challenge to public health policy but to every American’s financial stability. We all contribute to this system through taxes and insurance premiums, making it imperative that these funds are managed efficiently to ensure both sustainability and equity in healthcare access. This situation calls for concerted efforts from policymakers, healthcare providers, and the public to rein in costs and secure the future of our healthcare system.
Analysis of End-of-Life Care Expenses by Cause of Death
Healthcare spending in the United States is highly concentrated among a small segment of the population, particularly those at the end of their lives or those with serious or chronic illnesses. This pattern underscores the substantial cost disparities within the healthcare system, especially as it pertains to end-of-life care.
In 2021, an astonishing disparity in health expenditures was observed: 5% of the population accounted for nearly half of all health spending. This top 5% incurred an average of $71,067 in health expenditures annually. The spending becomes even more skewed at the upper echelons, with those in the top 1% of health spenders averaging over $166,980 per year in medical expenses. Such figures highlight the intense resource utilization by individuals with extensive healthcare needs, often driven by complex and multiple chronic conditions or severe acute illnesses.
The concentration of health spending is particularly pronounced among populations with inherently higher healthcare needs. For instance, among individuals reporting fair or poor health, the top 10% of spenders accounted for 55% of the total health expenditures. Similarly, in the demographic of adults aged 65 or older, 53% of all health expenditures were concentrated among those in the top 10% of spenders.
The skewed distribution of healthcare spending towards a small percentage of the population, particularly those nearing the end of life, presents significant challenges and opportunities. These statistics reflect the substantial financial burden placed on the healthcare system by end-of-life care.
The Burden of Out-of-Pocket Expenses for End-of-Life Care
High out-of-pocket medical expenditures can severely strain the finances of older households. For example, when one spouse becomes seriously ill, significant medical costs can deplete shared assets, potentially leaving the remaining spouse with limited resources. Risk of high medical expenses plays a crucial role in decisions that households make about saving and spending assets during retirement.
End-of-life care, which includes hospital care, palliative care, and hospice care, typically incurs high costs in the last months of life. For instance, in the last month of life, hospital costs alone can amount to an average of $32,379, and hospice care costs reaching up to $17,845. Despite the high costs, about 85% of these expenses are typically covered by government entities, with Medicare paying most of these bills. The remaining 15% may be covered by a combination of managed care, private insurance, and veterans' benefits, with about 3% of the costs paid out-of-pocket by patients and families. So, everyone has a vested interest in managing end-of-life expenses and delivering culturally sensitive, patient-centered care.
A 2022 study highlighted the cost benefits associated with hospice care for terminal patients with non-sudden illnesses. Patients who spent 15 or more days in hospice incurred about 3.1% less in medical costs than similar patients who did not receive hospice care. On average, end-of-life care costs were $67,192 but dropped to $59,219 for patients who remained in hospice care for 266 days or longer. The study also found variations in costs based on the type of illness and treatment needs. For example, individuals with neurodegenerative diseases averaged $61,004 in medical expenses, while those with chronic kidney disease/end-stage renal disease averaged $82,781. Importantly, the longer a patient remained in hospice, the lower their overall medical care costs, with the most significant reductions observed in the costliest illnesses.
The financial implications of end-of-life care are considerable, with out-of-pocket expenses forming a significant part of the economic burden for many families. While government programs and insurance can alleviate some of this burden, the costs can still be overwhelming, especially for those without adequate coverage. Enhancing access to affordable end-of-life care, particularly hospice and palliative care, could reduce these burdens while providing compassionate and appropriate support for terminally ill patients and their families.
Ensuring Equitable Access to Healthcare
The landscape of elder care, especially at the end of life, is multifaceted and complex, involving public, private, and informal care providers and payers. An effective healthcare system must not only deliver care but also ensure that it is patient-centered—delivered at the right time, at the right place, and aligned with patient preferences.
In this framework, advance care planning services are not just beneficial but essential. It lays the groundwork for goal concordant care, balancing the growing healthcare demand of an aging population with available resources.
While many prefer dying at home, it's vital for patients and families to understand the full implications of this choice. Healthcare providers can facilitate informed decision-making by thoroughly discussing the realities, challenges, and alternatives for care in the last chapters of life. This transparent communication helps align choice with the patient's needs, preferences, and practical care considerations, thereby truly honoring the concept of a "good" death.
Achieving equitable access to healthcare and improving the cultural competence of health providers are essential for reducing minority population disparities in end-of-life care. By understanding and addressing the unique challenges that different communities face, healthcare professionals can offer more supportive, dignified, and comfortable end-of-life experiences.
We share this information to empower you with knowledge, enabling you to make more informed decisions about your care and that of your loved ones. This article also helps healthcare providers gain a clearer understanding of the experiences of various racial and ethnic groups, ensuring that care is grounded in evidence and delivered with cultural sensitivity and respect. In doing so, we can help bridge gaps in end-of-life care and provide compassionate, appropriate support to all individuals.
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