BY SARA DADO, BSW, MSW, LCSW
November has always been one of my favorite months of the year. Partially because of fall and Thanksgiving and family time and all the things that come along with preparing for the holiday season. But also because it is National Hospice and Palliative Care Month, a time of year when the focus turns to the sector of our healthcare system where much of my professional career has been spent. In my current position, I serve as the executive director of the Illinois Hospice and Palliative Care Organization, the state’s only trade organization focused solely on supporting the provision of high-quality hospice and palliative care. My work focuses primarily on member engagement, education, advocacy and outreach to improve access to this critical part of every person’s eventual healthcare experience—end of life. But my journey started as a bedside social worker in hospice, which, to this very day, is my most beloved job that I have had the honor to hold. Sitting bedside, holding hands and space with the dying and their loved ones. I truly believe there is no greater honor than listening to stories, providing presence and offering a safe space for people to grieve and celebrate the lives of those whom they love.
The history of hospice care can be traced all the way back to the Middle Ages, when hospices were places of hospitality for the sick and dying. The modern hospice movement was founded by Dame Cicely Saunders in 1967, when she opened the first hospice program, St Christopher’s Hospice, in London. By the mid 1970s, the concept of hospice was becoming more and more popular in the United States. In 1979, under President Jimmy Carter, a demonstration project was launched across 26 states to evaluate the cost effectiveness of hospice care. This project led to the creation of the Medicare Hospice Benefit, which was signed into law by President Ronald Reagan in 1983. The Medicare Hospice Benefit is one of the longest-standing, most comprehensive and holistic models of care that is still in existence in America today.
Hospice has not been immune to the changes in the healthcare industry over the past several decades. We have seen an influx of private equity, mergers, acquisitions, corporate buy-outs and, perhaps most startling, a significant decline in non-for-profit hospices across the country. For example, in 2001, there were just under 2,000 hospice providers across the country in operation. Of those, 1,200 were non-for-profit organizations. By 2022, the number of total hospices in operation had grown to close to 6,000, 75% of which are now for-profit hospices. That is a seismic shift for a relatively small industry within the healthcare marketplace, which may or may not feel all that concerning. After all, tax status does not necessarily imply better or worse quality of care or provision of service. The media has taken notice of these changes, publishing several articles over the past few years outlining an increase in fraud and abuse within the hospice industry. The most notable of these articles is “Endgame: How the Visionary Hospice Movement Became a For Profit Hustle,” written by Ava Kofman and co-published by ProPublica and The New Yorker in Nov 2022. This article outlines examples of disturbing fraud and exploitation by a handful of hospice providers across a handful of states: hospices enrolling patients without their knowledge or without a qualifying terminal illness, hospices incentivizing patients and referral sources with promises of free care and extravagant gifts, hospices preying upon vulnerable people by providing unnecessary drugs and interventions to drive up profit margins and lower cost. One hospice in California was said to be operating 15 separate hospices out of one office location!
The cases and information in these articles left me saddened and stunned. Could the hospice care that I had loved and supported for so many years really have turned into this—nothing more than a for-profit hustle? I had to find out, and my role as executive director at the state’s sole hospice only focused trade association allowed me the opportunity to better understand where my state stood in the mix of this perceived change and sudden chaos. I have spent the past 18 months talking to hospice providers, making site visits, having real conversations with real people who are doing this important work every day and, more importantly, the patients and families who are receiving this care. I traveled to conferences, meetings and various speaking engagements, talking to experts the field and following trends as they made their way to my inbox or across my desk.
Several important things became apparent as I navigated my way through this journey. My state, Illinois, has not been immune to these national trends of change. We are down to just a handful of non-for-profit hospices left standing. We have seen a significant rise in private equity-backed and/or corporate-owned hospice providers. We have a significant number of small for-profit privately owned hospices, and new licenses are being issued every year. Within the state and beyond, there is general agreement that the Medicare Hospice Benefit does need reform. A benefit that was first written in the early 1980s and primarily crafted to care for patients dying of cancer, in many ways, no longer fits into our complex system of chronic illness and advanced aging. Our population is living longer but is also living longer with more serious illness and chronic conditions. The intricacies of multiple complex health conditions have taxed the system and made the hospice “six-month prognostication” rule nearly impossible to effectively manage. Another clear concern as a direct result of increased media scrutiny has been the increased audit burden and compliance concerns. Many (often small) providers are not staffed to meet the burden of increased regulatory oversight and the work that is needed to ensure timely payment to provide timely care.
But I also discovered something equally if not more important. Nurses still sitting vigil for dying patients, holding hands and ensuring comfort as final breaths are drawn. Social workers comforting grieving family members as they prepare to say a final goodbye, Chaplains praying over bedsides and helping usher patients from one life into the next, certified nurses’ aides providing loving hands-on care, music therapists playing instruments and singing, volunteers volunteering, administrators and office staff working behind the scenes to ensure patients’ needs are met. The list goes on and on—people dedicating their lives to ensure the care of patients at end of life is compassionate, ethical and high quality. This is the hospice that I fell in love with over 20 years ago and was relieved to discover does still exist in homes, facilities and hospitals across the state and country each and every day. So, my work continues to ensure that hospices have access to the resources that they need to continue to do this valuable work.
Your work continues as well. We can’t be naïve to assume that all hospices provide the best care. We must be armed with knowledge and facts to support patients and families in making such an important decision for the care of a loved one. When talking to patients about hospice, I encourage you to consider the following questions, which may assist them in locating the best hospice provider to meet their needs:
Does the hospice offer same day admissions?
How does the hospice handle after-hour calls?
What services does the hospice provide (outside of the required services)? Do they offer music therapy, massage, pet visits, art therapy, etc.?
On average, how many patients will each nurse be caring for? Usually, lower is better.
How large of a geographic area does my hospice team cover?
How quickly will medications, equipment and supplies be delivered?
What happens if symptoms cannot be managed safely at home?
Of course, these are just a few examples of questions to ask. Understanding what is important to your patient and their family is the key indicator to finding the right hospice. I also encourage families to visit www.medicare.gov/carecompare to identify hospices with high quality scores within their area. This tool is not without flaws, but it can be a good starting point to identify local providers with a high star rating.
Hospice has always been and continues to be a critical part of the healthcare system, just as death will always be a part of the journey of life. As we navigate changing waters and new landscapes, my hope continues to be that hospice will remain focused on its original mission, as outlined by Dame Cicely Saunders so many decades ago:
“You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”
Sara Dado BSW, MSW, LCSW, is currently serving in a dual role as executive director at both The HAP Foundation and the Illinois Hospice and Palliative Care Organization (IL-HPCO). She has over 20 years of experience in various leadership positions across the healthcare continuum. Prior to her current roles, Sara served as the senior director of clinical programs at Lightways Hospice and Serious Illness Care, where she was responsible for daily operational oversight of multiple clinical departments and was instrumental in the development of the agency’s palliative care and pediatric program growth. In addition, Sara led several key strategic projects, including direct contracting, value based insurance design contracts and the introduction and implementation of remote patient monitoring. Prior to joining Lightways, Sara served as the chief compliance officer and executive director at Transitions Care, where she was responsible for the oversight of daily operations and compliance for a multi-state post-acute care organization.
Sara is the immediate past chair of the Illinois Hospice Government Affairs Committee, where she led advocacy efforts in the passage of several key pieces of legislation to support improvements to quality and access to end-of-life care for all ages across the state. She is a four-time state of Illinois delegate leader in Washington, D.C., leading teams of advocates both in Springfield and on Capitol Hill. Sara is a nationally recognized speaker and expert on a variety of topics including quality improvements to end-of-life care, how to reduce barriers to conversations on goals of care and advance care planning. Sara has held several key board and committee positions, including the Illinois Hospice and Palliative Care Organization, The Greater Illinois Pediatric Palliative Care Coalition, National Hospice and Palliative Care Organization’s Steering Committee and Leading Age Clinical Advisory Committee.
Sara received her master’s degree in social work from the University of New York at Albany and her bachelor’s degree in social work from the University of Northern Iowa. She is a Licensed Clinical Social Worker in the state of Illinois. She resides in the northwest suburbs with her husband and three children.
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