Hospice care is a vital form of healthcare dedicated to providing comfort and support to patients in their final stages of life. While it’s a relatively recent concept in the United States, with its inception in 1974, it has gained significant popularity, with over half of Medicare beneficiaries 2020 receiving hospice services. Nevertheless, as we delve into 2023, hospice care confronts several formidable challenges. These include labor shortages, concerns about the quality of care, and the notable presence of for-profit entities in the industry. In this article, we will navigate the history of hospice care in the United States, its present state in 2023, and the challenges that affect not only hospice patients but also the dedicated staff and providers.
History of Hospice Care in the United States
The pioneering spirit of hospice care in the United States can be traced back to 1974 when Florence Wald, a nurse, founded the nation’s first hospice in Connecticut. Inspired by the groundbreaking work of British physician Cicely Saunders, who established the first modern hospice in London in 1967, Wald recognized the need for improved care for patients approaching the end of life. Her vision aimed to provide solace and support to patients and their families, a concept that marked the birth of hospice care in the U.S.
In subsequent decades, hospice care gained momentum across the nation. In 1982, Medicare started covering hospice care, significantly enhancing patient accessibility. Today, hospice care is available in most regions and is delivered by nonprofit and for-profit organizations.
Here are some key milestones in the history of hospice care in the United States:
1963: Dr. Cicely Saunders introduces her idea of specialized care for the dying during a lecture at Yale University.
1969: Senators Frank Church and Frank E. Moss introduced the first hospice legislation to provide federal funds for hospice programs, but the legislation was not enacted.
1974: Connecticut Hospice, America’s first hospice, is founded by Florence Wald and a group of nurses, doctors, and clergy.
1982: Medicare begins covering hospice care, which helps to make it more accessible to patients.
Today, hospice care is available in most parts of the country, provided by nonprofit and for-profit organizations.
The Medicare Hospice Benefit was authorized by the Tax Equity and Fiscal Responsibility Act (TEFRA) of 1982. It is the single major expansion of the Medicare benefit structure since 1972, when disability and end-stage renal disease (ESRD) were included as bases for Medicare entitlement. The Medicare hospice benefit allows a beneficiary with a terminal illness to forgo curative treatment for the illness and instead receive palliative care. Once a patient gets hospice care, Original Medicare will cover the care for the terminal illness and related conditions. The Medicare Hospice Benefit played a significant role in developing hospice care in the United States. It helped to make hospice care more accessible to patients by covering the cost of care, which allowed more patients to receive hospice care. The Medicare Hospice Benefit also helped to establish hospice care as a legitimate and recognized form of healthcare in the United States, which helped to increase public awareness and acceptance of hospice care.
The Medicare Hospice Benefit has significantly impacted the availability of hospice care in the United States. Here are some ways in which the Medicare Hospice Benefit has impacted the availability of hospice care:
Increased access to care: The Medicare Hospice Benefit has made hospice care more accessible to patients by covering the cost of care. This has allowed more patients to receive hospice care, which has helped to increase the availability of hospice care in the United States.
Increased utilization of hospice care: The Medicare Hospice Benefit has also led to an increase in the utilization of hospice care in the United States. Medicare spending for hospice increased from approximately $2.9 billion in 2000 to $15.1 billion in 2014. This increase in utilization has helped to increase the availability of hospice care in the United States.
Compliance with Medicare coverage requirements: The Medicare Hospice Benefit requires compliance with Medicare coverage requirements. This helps ensure that patients receive high-quality care and increases the availability of hospice care in the United States.
Improved quality of care: The Medicare Hospice Benefit has helped to improve the quality of hospice care in the United States by requiring compliance with quality standards. This has helped to increase the availability of high-quality hospice care in the United States.
Overall, the Medicare Hospice Benefit has played a significant role in increasing the availability of hospice care in the United States by making hospice care more accessible to patients, increasing utilization of hospice care, requiring compliance with Medicare coverage requirements, and improving the quality of hospice care.
Current State of Hospice Care in 2023
In the year 2023, hospice care faces multifaceted challenges. Foremost among them is a critical shortage of healthcare personnel, including nurses and aides, who play pivotal roles in caring for hospice patients. This shortage has been exacerbated by the ongoing COVID-19 pandemic, leading to burnout and heightened stress among healthcare workers.
Another pressing issue confronting hospice care in 2023 is the ascendancy of for-profit corporations within the industry. For-profit hospices currently provide the majority of hospice services in the United States, with private equity firms making substantial investments. Concerns have arisen that the profit motive may compromise the quality of care delivered to patients.
Here are some of the differences between for-profit and not-for-profit hospices in the United States:
For-profit hospices:
The goal is to provide hospice care while offering an annual stakeholder profit share (or return on investment).
Financial decisions are made and measured by the need to deliver a profit along with the delivery of patient care.
Engage in patient selection through significantly different referral networks than non-profits.
Receive more patients from long-term care facilities and fewer through more traditional paths, such as physician referrals.
Have fewer cancer patients and more patients with longer lengths of stay.
Must pay tax on its profits and provide a financial return to its shareholders.
Are prohibited from using charitable donations from the community for direct patient care.
Not-for-profit hospices:
Reinvest all proceeds to the hospice program to further enhance patient and family care.
Provide better care experiences on average than for-profit hospices.
Provide patients with 10 percent more nursing visits, 35 percent more social worker visits, and twice as many therapy visits per patient day than for-profit hospices.
Admit more critically ill patients immediately after a hospital stay than for-profit hospices.
They are not required to pay taxes to state or federal governments on the funds they receive from Medicare.
May hold fundraisers, solicit donations from the community, and use the funds for direct patient care.
These differences between for-profit and not-for-profit hospices highlight the importance of understanding the type of hospice care provider when deciding which hospice should care for a patient or their loved one.
There are regulations in place to ensure that hospices provide high-quality care regardless of their profit status:
The Medicare Hospice Benefit requires compliance with quality standards. Hospice providers must meet specific requirements to participate in the Medicare Hospice Benefit program, including providing high-quality care to patients. The Centers for Medicare & Medicaid Services (CMS) also conducts regular surveys of hospice providers to ensure they meet quality standards. Additionally, the Office of Inspector General (OIG) of the U.S. Department of Health and Human Services (HHS) audits and investigations of hospice providers to ensure they comply with Medicare coverage requirements and provide high-quality care to patients. However, research suggests that for-profit hospices may provide lower-quality care than non-profit hospices. Therefore, patients and their families must research and compare hospice providers to ensure they receive high-quality care, regardless of whether they receive care from a nonprofit or for-profit hospice.
Challenges Facing Hospice Patients
Hospice patients encounter several challenges in 2023, including:
Access to Care: Many hospice patients may struggle to access hospice services due to shortages of providers in their geographic area. This can make it difficult for patients to receive the care they need, especially if they live in rural or remote areas.
Quality of Care: Patients may be concerned about the quality of their care, particularly those from for-profit hospices. Some for-profit companies dominate hospice care in the U.S., and private equity firms are entering the market. This trend has raised concerns about the quality of patient care, as for-profit hospices may prioritize profits over patient care.
Cost of Care: Hospice care can be financially burdensome, posing affordability challenges for some patients and their families. This can be especially challenging for patients who require long-term hospice care, as the costs can quickly add up.
Hospice patients and their families can take several steps to ensure they receive high-quality care:
Research hospice providers: Patients and their families can research hospice providers in their area to find ones with a good reputation for providing quality care. They can also look for hospices accredited by organizations like the Joint Commission on Accreditation of Hospitals.
Ask questions: Patients and their families should not be afraid to ask questions about the care they will receive. They can ask about the qualifications of the hospice staff, the types of services provided, and the availability of support for both the patient and their family.
Participate in quality assurance programs: Hospice providers may offer quality assurance programs that allow patients and their families to provide feedback on their care. This feedback can help providers identify areas for improvement and make changes to improve the quality of care.
Monitor care: Patients and their families can monitor their care to meet their needs. They can keep track of medications, ask questions about treatment plans, and report any concerns to the hospice staff.
Participate in hospice quality reporting programs: The Hospice Quality Reporting Program (HQRP) collects data on the quality of care provided by hospices. Patients and their families can participate in this program by providing feedback on the care they receive, which can help improve the quality of care for future patients.
Challenges Facing Hospice Staff
Hospice staff also confront numerous challenges in 2023, such as:
Labor Shortages: Hospice providers may face the daunting task of recruiting adequate nurses and aides to meet patient needs.
Burnout: Healthcare workers often experience burnout and heightened stress levels due to the emotionally demanding nature of caring for terminally ill patients.
Training: Hospice staff may require additional training to provide top-tier patient care, furthering the demand for skilled healthcare professionals.
Maintaining a positive and supportive work environment is essential for hospice staff to provide high-quality care to patients. Here are some best practices that hospice providers can implement to create a positive work environment:
Foster teamwork: Hospice providers can foster a strong sense of teamwork by mastering the IDG team meeting and encouraging collaboration among staff.
Address staffing shortages: Hospice providers can address staffing shortages by investing in recruitment and retention strategies, such as offering competitive salaries and benefits and creating a supportive work environment.
Provide opportunities for professional development: Hospice providers can provide opportunities for professional development, such as training and continuing education, to help staff improve their skills and knowledge.
Create a culture of appreciation: Hospice providers can create a culture of appreciation by recognizing staff for their hard work and contributions and providing opportunities for staff to give feedback and share their ideas.
Prioritize staff well-being: Hospice providers can prioritize staff well-being by offering support programs, such as employee assistance programs and mental health resources, to help staff manage stress and prevent burnout.
Creating a positive and supportive work environment is essential for hospice staff to provide high-quality patient care and maintain job satisfaction and well-being. Hospice providers may need to invest in recruitment and retention strategies, professional development opportunities, and support programs to attract and retain skilled healthcare professionals.
Challenges Facing Hospice Providers
Finally, hospice providers themselves face their own set of challenges in 2023, which include:
Competition: The hospice industry is increasingly dominated by for-profit organizations, making it challenging for nonprofit hospices to compete.
Quality of Care: Hospice providers must prioritize delivering high-quality care to patients, irrespective of their profit status, to maintain the integrity of the hospice care field.
Funding: Securing funding to sustain operations remains a formidable challenge for hospice providers, regardless of their organizational structure.
Workforce Pressures: Hospices are contending with workforce pressures, including labor shortages and pandemic-related challenges.
Regulatory Pressure: Government oversight of hospice providers is increasing, a significant source of change in the hospice industry.
Inflationary Headwinds: Hospice providers face inflationary headwinds, impacting their ability to provide high-quality care.
Need for Improvement: Some doctors believe that the hospice industry is in urgent need of fixing, as half of all Americans are dying in hospice care.
Nonprofit hospices can use the following strategies to compete with for-profit hospices:
Mergers and Acquisitions: Nonprofit hospices can adopt strategies often seen in the for-profit space, such as mergers and acquisitions, to improve their competitiveness.
Focus on Quality of Care: Nonprofit hospices can prioritize delivering high-quality care to patients, which is critical in differentiating themselves from for-profit hospices.
Target Patients Requiring Higher Levels of Care: Nonprofit hospices can target patients requiring higher levels of care for shorter periods, such as cancer patients, to differentiate themselves from for-profit hospices that tend to target patients who need less intensive care for more extended periods, such as dementia patients and those in assisted living facilities.
Advocate for Regulation: Nonprofit hospices can advocate for increased government oversight of hospice providers to level the playing field and ensure that all hospices are held to the same standards of care.
Strategic Planning: Nonprofit hospices can engage in strategic planning to develop a simple but powerful approach to strategy, objective, tactic, and deployment, which can help them to better compete with for-profit hospices.
Conclusion
The journey of hospice care since its inception in 1974 in the United States has been marked by remarkable progress. However, as we navigate the landscape of 2023, hospice care confronts critical hurdles, including labor shortages, quality concerns, and the preeminence of for-profit entities. To address these challenges, hospice providers must remain steadfast in their commitment to delivering high-quality care while exploring strategies to attract and retain healthcare professionals and secure the necessary funding for continued service provision.
