Hospice care in the United States has been evolving significantly over the past few decades. Data from the National Hospice and Palliative Care Organization (NHPCO) reveals a notable shift in the primary reasons why individuals are choosing hospice, moving away from cancer as the predominant diagnosis to a rise in non-cancer related conditions. This trend highlights the expanding role of hospice in providing comfort and comprehensive support for a broader spectrum of life-limiting illnesses.
One of the most striking changes reported by NHPCO’s 2021 Facts and Figures is the growth in hospice patients with principal diagnoses other than cancer. Specifically, conditions like Alzheimer’s disease, dementia, and Parkinson’s disease now represent a significantly larger proportion of hospice patients compared to cancer. In fact, the number of hospice patients with Alzheimer’s, dementia, or Parkinson’s is more than four times greater than those with cancer diagnoses. This marks a dramatic departure from historical trends. As recently as 2007, cancer was still the leading primary diagnosis for individuals receiving hospice care.
This shift in common diagnoses in hospice care reflects several important factors. Firstly, advancements in cancer treatments have led to increased survival rates for many cancer types. While cancer remains a serious illness, individuals are living longer with cancer, and in some cases, treatments are more effective in managing the disease for extended periods. Secondly, the aging population in the U.S. is contributing to a rise in neurodegenerative diseases like Alzheimer’s and Parkinson’s. These conditions, while not curable, significantly impact quality of life in their later stages, making hospice care an increasingly relevant and beneficial option.
Understanding these changing diagnosis trends is crucial for healthcare providers, policymakers, and families. It underscores the need for hospice services to be equipped to address the complex needs of patients with a wider range of conditions beyond cancer. This includes specialized care approaches, staff training, and resources tailored to the unique challenges presented by diseases like dementia and Parkinson’s.
The NHPCO data also sheds light on hospice utilization across different communities. While there has been progress in reaching diverse populations, disparities still exist. In 2019, a higher percentage of white Medicare beneficiaries utilized hospice care compared to Hispanic and Black beneficiaries. This highlights the ongoing need for outreach and culturally sensitive hospice services to ensure equitable access for all individuals who could benefit from end-of-life support, regardless of their background or primary diagnosis.
Late access to hospice care remains a concern, irrespective of the primary diagnosis. The NHPCO report indicates that a significant proportion of Medicare decedents receive hospice care for very short durations. A concerning 10 percent received hospice for only two days or less, and 25 percent for five days or less. These brief hospice stays limit the ability of patients and families to fully benefit from the comprehensive, person-centered care model that hospice provides. Education and earlier conversations about hospice as a care option are essential to ensure timely access and maximize the benefits of hospice services for individuals with all types of life-limiting illnesses.
Overall, the data from NHPCO’s Facts and Figures report provides valuable insights into the evolving landscape of hospice care. The shift in common diagnoses towards non-cancer conditions, particularly neurodegenerative diseases, underscores the broadening scope of hospice and its increasing relevance in addressing the needs of a diverse patient population facing life-limiting illnesses. Continued efforts to improve access, promote earlier hospice referrals, and tailor services to meet the specific needs of patients with various diagnoses are crucial for ensuring that hospice care remains a vital and effective component of the healthcare system.
