How Palliative and Hospice Care Enhance End-of-Life Quality for Minorities and Saves $1.33 Billion

Making informed end-of-life care decisions is crucial for ensuring that your final days are spent in comfort and dignity. The choices you make can significantly affect your quality of life and the emotional and financial burden on your loved ones. This is particularly important in the context of health equity, as minority communities often face disparities in access to quality end-of-life care.

Why End-of-Life Choices Matter

Healthcare spending in the U.S. is concentrated on the sickest and neediest patients, with the top 5% of spenders accounting for nearly 50% of all healthcare costs. This group, characterized by serious medical illnesses, functional dependency, cognitive impairment, frailty, and a heavy reliance on caregivers, often includes individuals not just in the last twelve months of life, but those living with chronic, serious illnesses. The need for equitable access to palliative and hospice care is evident, as these services can provide significant relief and improve the quality of life for these patients.

As the U.S. population ages, the number of Medicare beneficiaries is projected to rise significantly, from 65 million in 2022 to 75 million in 2029. With fewer workers supporting each beneficiary, Medicare faces financial challenges, with Congressional Budget Office 2023 projections indicating it could become insolvent by 2035. This underscores the necessity of efficient healthcare spending and the potential benefits of palliative and hospice care in reducing costs while improving patient outcomes.

Engaging in advance care planning (ACP) and utilizing palliative and hospice care can help you achieve a "good death," aligning medical care with your values and wishes. These services not only honor your end-of-life care preferences but also have the potential to reduce unnecessary medical interventions. Despite these benefits, many minorities are less likely to be aware of or utilize these services. For instance, 74% of Black adults in the U.S. report not knowing about palliative care, and those who are somewhat aware often confuse it with hospice care.

Minorities also experience higher rates of potentially preventable medical encounters in the last month of life, highlighting the need for better access to and understanding of palliative and hospice care. These disparities are often driven by unfamiliarity with hospice care, family-centered cultures that prefer aggressive end-of-life treatments, and delayed transitions to hospice care compared to their insured White counterparts.

It's imperative to recognize that palliative and hospice care should be equally accessible and of high quality for all races and ethnicities. By making informed end-of-life care decisions, you can ensure that your final days are spent in comfort, reducing the emotional and financial burden on your family, and potentially easing the strain on healthcare systems like Medicare. Taking control of your care means making choices that align with your values and ensure a dignified and meaningful end-of-life experience.

The Reality of Intensive End-of-Life Treatments

At the end of life, Black and Hispanic individuals are more likely to be admitted to the hospital and receive intensive life-sustaining treatments compared to their White counterparts. This trend is evident in various statistics, highlighting significant racial disparities in end-of-life care.

For example, Black patients are more likely to die while receiving maximal life-supporting treatment (36%) compared to White patients (21%) and Hispanic patients (26%). Furthermore, Hispanic patients are more likely to die following a trial of life-supporting treatment (43%) compared to White (26%) and Black patients (28%). These differences underscore the higher prevalence of aggressive treatments among minority populations at the end of life.

Moreover, adjusted in-hospital mortality rates are slightly higher for Black patients (9%) than White patients (8%), with Hispanic patients having the lowest rate (6%). However, Black (28%) and Hispanic (27%) patients are significantly more likely to be treated in the ICU compared to White patients (23%). Similarly, mechanical ventilation is used more frequently among Black (16%) and Hispanic (17%) patients compared to White patients (12%).

Despite similar rates of advance care planning (ACP) across racial groups, the likelihood of having a do-not-resuscitate (DNR) order is lower among Black (7%) and Hispanic (8%) patients compared to White patients (13%). This indicates that minority patients are less likely to have documented their wishes to forego aggressive interventions at the end of life, potentially leading to more intensive treatments.

These statistics reveal a troubling trend: Black and Hispanic patients are more likely to receive invasive treatments like mechanical ventilation and ICU care in their final days. This can lead to what is often termed a "bad" death, characterized by prolonged suffering and a lower quality of life. The pursuit of aggressive treatments, even when they offer little chance of benefit, can impose significant burdens on both patients and their families. It can also lead to increased emotional and financial stress, contributing to the overall expense of healthcare.

In contrast, White patients are more likely to have treatment limitations and die without extensive life-support interventions, suggesting a more managed approach to end-of-life care that often involves earlier integration of palliative and hospice services. This approach tends to focus more on comfort and quality of life rather than extending life at all costs.

The preference for more aggressive treatments among Black and Hispanic patients may stem from several factors, including cultural beliefs, mistrust in the healthcare system, and a lack of adequate communication about the benefits of palliative and hospice care. Additionally, implicit biases among healthcare providers can influence these decisions, leading to disparities in the care provided to minority patients. For more background on these factors, we encourage you to read several of the other posts in our Ensuring Health Equity: Closing the Gap series:

• How Your Race and Ethnicity May Shape End-Of-Live Choices

• Closing Health Equity Gaps: Why You Should Lead Your End-Of-Life Care Planning

• ACP Numbers Are Low for Everyone, Especially Minorities

Overall, the current patterns of end-of-life care for Black and Hispanic patients highlight a critical need for more equitable and culturally sensitive approaches to advance care planning. By understanding and addressing these disparities, you can ensure that your end-of-life care aligns with your values and preferences, leading to a higher quality of life in your final days and reducing unnecessary suffering and financial burdens.

What Doctors Choose for End-of-Life Care

When it comes to their own end-of-life care, doctors overwhelmingly prefer to avoid the intensive, hospital-based treatments that many patients receive. Studies reveal that physicians, equipped with intimate knowledge of the healthcare system and the effects of aggressive medical interventions, tend to choose a different path for themselves.

For instance, a 2016 Cornell Medicine study found that physicians are significantly less likely to die in a hospital compared to the general population (27.9 percent vs. 32 percent, respectively). They are also less likely to undergo surgery (25.1 percent vs. 27.4 percent) and be admitted to the ICU (25.8 percent vs. 27.6 percent). These findings suggest that doctors, aware of the often violent and futile nature of high-intensity treatments, opt for a more comfortable and dignified end-of-life experience.

Similarly, a 2014 Stanford Medicine study surveyed 2,013 doctors and found that an overwhelming 88.3 percent would choose a "no-code" or do-not-resuscitate (DNR) order for themselves. This preference is not driven by financial incentives or insensitivity but stems from a deep understanding of the medical system. Dr. Periyakoil from Stanford noted, "Our current default is ‘doing,’ but in any serious illness there comes a tipping point where the high-intensity treatment becomes more of a burden than the disease itself."

Doctors' choices reflect their awareness that aggressive treatments at the end of life often do not improve quality of life and can even prolong suffering. Instead, they favor palliative care and hospice services, which focus on comfort, pain management, and emotional support. These services aim to provide a "good death" by prioritizing the patient's quality of life and respecting their end-of-life wishes.

Given that doctors, who have extensive medical knowledge and firsthand experience with end-of-life care, tend to avoid aggressive treatments for themselves, it raises an important question: Should you consider following their example? By exploring palliative care and hospice options, you can ensure that your end-of-life experience aligns with your personal values and priorities, potentially avoiding the pitfalls of intensive, often futile medical interventions.

Current Trends in Palliative and Hospice Care Utilization

Overall Trends in the U.S. (2018-2022)

From 2018 to 2022, the United States saw modest improvements in the utilization of palliative services and hospice care, reflecting a growing awareness of the benefits of these services for end-of-life care. In 2022, approximately 1.72 million Medicare beneficiaries received hospice services, a significant increase from previous years. This 50% rise from 2010 outpaced the 33% increase in the number of Medicare decedents over the same period, highlighting a positive shift towards more patients accessing hospice care.

However, the percentage of Medicare decedents using hospice care has seen a slight decline. In 2018, nearly 51% of Medicare decedents utilized hospice services, compared to 49% in 2022. This dip could be attributed to disruptions caused by the COVID-19 pandemic, which affected healthcare access and delivery across the board. Despite these challenges, the overall number of hospice users has remained relatively stable, hovering around 1.7 million from 2020 to 2022.

Medicare hospice spending has also steadily increased, rising from $19.2 billion in 2018 to $23.7 billion in 2022. This increase in spending reflects both the growing number of users and the recognition of hospice care's value in providing compassionate end-of-life care while managing healthcare costs.

The Value of Hospice in Medicare Report (March 2023) highlighted that for hospice stays between 91–180 days, the proportion of total care costs attributed to hospice was 40%, yet the overall costs of care were $9,057 less than those for non-hospice users ($58,117 vs. $67,192 in 2019). This statistic underscores the cost-effectiveness of hospice care while emphasizing its role in enhancing the quality of life for patients during their final days.

Overall, these trends indicate a gradual but steady move towards embracing palliative and hospice care, which not only supports better quality end-of-life care but also offers significant financial benefits by reducing overall healthcare costs.

Disparities in Palliative and Hospice Utilization Among Minority Communities

Despite the known benefits of palliative and hospice care, there remains a significant disparity in utilization rates among different racial and ethnic groups. Over the past five years, an average of 52% of White Medicare decedents were enrolled in hospice care, compared to just 38% for minority communities. This discrepancy highlights the ongoing challenges in achieving health equity at the end of life.

The lower utilization rates among Black, Hispanic, and Asian communities can be attributed to various factors, including cultural preferences for more aggressive treatments, lack of awareness about the benefits of hospice care, and systemic barriers within the healthcare system. For instance, in 2018, 43% of Hispanic Medicare decedents used hospice care, but this figure dropped to 33% in 2020 before slightly rebounding to 38% in 2022. Similarly, Black and Asian communities have consistently lower enrollment rates compared to their White counterparts.

If hospice utilization among minority groups increased to the level of White decedents (52%), the potential annual cost savings would be substantial. Using the estimated cost saving of $9,057 per person, the healthcare system could save approximately $690 million annually by increasing Minority population hospice enrollment. Additionally, increasing the hospice utilization rate among White decedents to 55% could generate an additional $643 million in savings, bringing the total potential annual savings attributed hospice utilization to $1.33 billion.

These statistics underscore the importance of addressing the disparities in hospice care utilization. By improving access and education around palliative and hospice care for minority communities, not only can we enhance the quality of end-of-life care, but we can also achieve significant cost savings for the healthcare system. This dual benefit highlights the urgent need to promote equitable access to these critical services.

Barriers to Hospice and Palliative Care Utilization in Minority Populations

Despite the clear benefits of hospice and palliative care, their use remains significantly lower among minority populations. This underutilization can be attributed to several interrelated factors that create substantial barriers.

7 Barriers to Hospice and Palliative Care for Minority Populations

1. Personal and Cultural Values. Many individuals from minority communities hold personal or cultural values that conflict with the hospice philosophy. Hospice care, which often emphasizes comfort over curative treatments, can be seen as giving up or hastening death. For instance,  Blacks are more likely than Whites to leave hospice care to pursue aggressive treatments and less likely to return after disenrollment.

2. Lack of Awareness. A significant number of minority patients and their families are simply unaware of the availability and benefits of hospice services. A study of home health clients found that many  Black and White patients who refused hospice enrollment had incorrect information about hospice care and had not discussed this option with their healthcare providers. Increased awareness and timely referrals can help bridge this gap.

3. Economic Concerns. Concerns about the financial burden of hospice care on the family can deter minority patients from enrolling in these services. This economic anxiety, coupled with inconsistent access to healthcare due to economic constraints, further exacerbates the issue.

4. Mistrust in the Healthcare System. Historical and ongoing experiences of discrimination contribute to a deep-seated mistrust in the healthcare system among minority populations. This mistrust extends to hospice care, with some viewing it as a way for the healthcare system to abdicate responsibility or hasten death.

5. Lack of Minority Representation. The expected lack of ethnic minority employees in hospice agencies can also be a deterrent. Patients from minority backgrounds may feel more comfortable and understood when cared for by staff who share their cultural and ethnic background. The absence of such representation can lead to a perception that hospice services are not designed with their needs in mind.

6. Poor Communication and Bureaucratic Challenges. Effective communication between healthcare providers and patients is crucial for understanding and utilizing hospice services. However, minority patients often report poor communication and perceived discrimination, which hinders their willingness to engage in hospice care. Additionally, the bureaucratic complexity of receiving Medicare hospice benefits can pose significant obstacles.

7. Timely Referrals. Timely referrals to hospice care are crucial for maximizing its benefits. Unfortunately, minority patients often receive referrals very late, during the last weeks or days of life, which limits the effectiveness of hospice care. Ensuring that referrals are made earlier can help patients and their families make more informed decisions.

Understanding these barriers is the first step towards addressing them. Healthcare providers must work towards building trust, improving communication, and increasing awareness about hospice and palliative care. By doing so, we can ensure that more patients from minority communities can benefit from these services, leading to better end-of-life experiences and improved health equity.

The Opportunity for Improvement

Positive Impact of Palliative and Hospice Care on Patient and Family Experience

Increasing the use of palliative and hospice care has the potential to significantly improve the end-of-life experience for both patients and their loved ones. These services are designed to provide comprehensive support, addressing not only physical symptoms but also emotional, social, and spiritual needs. Here are some key benefits:

6 Positive Impacts of Palliative and Hospice Care on Patient and Family Experience

1. Protects Patient Autonomy and Sense of Control. Palliative and hospice care enable patients to make informed decisions about their care, ensuring that their wishes are respected. This empowerment can enhance their sense of control over their final days, which is crucial for maintaining dignity and autonomy.

2. Lowers Surrogate Decision-Maker Stress. End-of-life decisions can be incredibly stressful for family members acting as surrogate decision-makers. Clear advance directives and involvement in palliative care can reduce this burden, making it easier for loved ones to honor the patient’s wishes without the weight of making these decisions alone.

3. Lessens Burden on Patient and Family Members. Palliative care provides symptom management that alleviates pain and discomfort, which not only benefits the patient but also reduces the emotional and physical strain on family members who provide care. This holistic approach supports the entire family unit.

4. Reduces Futile Medical Treatments. By focusing on comfort rather than cure, palliative and hospice care help avoid unnecessary and often burdensome medical interventions. This approach can prevent the prolongation of the dying process with treatments that offer no real benefit to the patient’s quality of life.

5. Prevents Unnecessary Prolongation of the Dying Process. Avoiding aggressive treatments that extend life without enhancing its quality can prevent prolonged suffering. This ensures that patients spend their final days in peace and comfort, rather than undergoing invasive procedures.

6. Increases Proportion of Patients Who Die at Home or Under Hospice Care. Many patients prefer to spend their last days in the comfort of their own home surrounded by loved ones. Hospice care facilitates this choice, providing the necessary medical support to manage symptoms and maintain comfort outside of a hospital setting.

A systematic search of 124 randomized controlled trials shows that palliative care improves outcomes for many end-of-life conditions, including cancer, chronic heart failure, chronic obstructive pulmonary disease, and dementia. These reviews highlight the effectiveness of palliative care in enhancing communication and providing psychosocial support.

Moreover, palliative care interventions are associated with improvements in patient quality of life and symptom burden. For instance, inpatient palliative care consultations can lead to better patient outcomes and encourage transitions to community settings, which helps alleviate the pressure on acute care facilities. Studies have shown that receiving palliative care is linked to lower emergency department attendance in the last year of life for older adults. Additionally, initiating palliative care consults within 24 hours of hospital admission can reduce hospital length of stay and related expenses.

Despite these benefits, disparities in the utilization of palliative care persist. A retrospective cohort study of over 5 million hospitalizations of dialysis patients revealed that  Black and Hispanic patients were less likely than  White patients to receive palliative care services in the hospital, even in facilities with a high proportion of minority patients.

Understanding the reasons why patients choose hospice care is also crucial. Two common motivations are the desire to stay at home and to avoid curative treatments that are painful or require hospitalization. By addressing these preferences, hospice care can provide a more compassionate and patient-centered approach to end-of-life care, ultimately improving the overall experience for both patients and their families.

Financial Benefits of Increased Palliative and Hospice Care Utilization

Increasing the use of palliative and hospice care among minority communities can lead to significant financial benefits, both for individual families and the healthcare system. Here are some key points:

Financial Benefits of Increased Palliative and Hospice Care Utilization

1. Medicare Spending. Currently, Medicare spends about 20% more on the last year of life for Black and Hispanic individuals than for White individuals. This disparity is largely due to the lower utilization rates of hospice care among minority groups, resulting in fewer hospice-related benefits and higher overall costs.

2. Cost Savings. Hospice care offers a cost-effective alternative to intensive, life-sustaining treatments. With an average savings of about $9,057 per Medicare hospice enrollee, increasing hospice utilization among minority populations to match that of White populations could result in nearly $690 million in annual cost savings. This significant reduction in expenses highlights the potential economic impact of improving hospice care access and acceptance.

3. Lower Cost Care Options. Hospice care emphasizes quality of life and aligns with many patients’ end-of-life wishes, such as dying at home and being comfortable and pain-free. For terminally ill Medicare patients, hospice often provides a lower-cost care option that still meets their needs and preferences, avoiding the financial and emotional burdens of prolonged hospital stays and aggressive treatments.

4. Out-of-Pocket Expenses. Families of terminally ill patients can face substantial out-of-pocket expenses, which can amount to up to 3% of their total healthcare costs. By increasing hospice utilization, these costs can be significantly reduced. On average, families could save about $272 each, resulting in a national savings of approximately $39 million annually. This reduction in financial burden can provide much-needed relief to families during a difficult time.

5. Resource Allocation. Racial and ethnic minorities are more likely to expend their financial resources to extend life, often opting for costly, life-sustaining strategies. Encouraging hospice enrollment can provide a more sustainable and compassionate alternative, ensuring that resources are used in a way that benefits both patients and their families without unnecessary financial strain.

Overall, increasing the utilization of palliative and hospice care among minority communities not only enhances the quality of end-of-life care but also offers substantial financial benefits. By addressing disparities in hospice care access and acceptance, we can help ensure that all patients receive the compassionate, cost-effective care they deserve at the end of life.

Taking Control of Your End-of-Life Decisions

Throughout this series, we have explored crucial aspects of end-of-life care and the impact of informed decision-making. We learned that intensive treatments at the end of life are more common among Black and Hispanic individuals, often leading to higher costs and lower quality of life. For instance, Black patients are more likely to die on maximal life support (36%) compared to White patients (21%). Understanding these dynamics highlights the importance of considering palliative and hospice care to ensure a "good" death, where comfort and dignity are prioritized.

We also discovered that doctors, with their extensive medical knowledge, overwhelmingly prefer to avoid intensive treatments and hospital deaths, opting instead for palliative and hospice care. According to a Stanford Medicine study, 88.3% of doctors would choose a "do-not-resuscitate" order for themselves. This insight emphasizes the value of these care options, which include protecting patient autonomy, reducing stress for surrogate decision-makers, and preventing unnecessary medical interventions. Palliative care has been shown to improve patient quality of life and reduce emergency department visits, while hospice care can save about $9,057 per Medicare enrollee.

By addressing barriers such as cultural and religious beliefs, lack of awareness, and mistrust in the healthcare system, you can take proactive steps to ensure your end-of-life care aligns with your values. Increasing hospice utilization by all communities could save nearly $1.3 billion annually. Engaging in advance care planning, discussing your preferences with loved ones and healthcare providers, and understanding the financial benefits of palliative and hospice care can significantly enhance your end-of-life experience. These measures not only improve quality of life in your final days but also provide substantial financial benefits for you and your family, ensuring your care is on your terms.