The hospice industry needs major reforms. It should start with apologies

“How has the clinical work you do affected you personally?” We’d come to the Q&A part of the evening in an historic church in eastern Pennsylvania. I had traveled there at the request of a local hospice to talk about my perspective as a doctor with a long career of caring for seriously ill and dying patients.

I smiled at the casually dressed older man who asked the question. It’s one I’d asked myself many times. I told him that my work has taught me the importance of apologies. Today is a good day to admit my mistakes and ask people for forgiveness, because tomorrow isn’t guaranteed. I’ve learned that there is no place for the passive voice when apologizing. “I’m sorry your feelings were hurt” is cringeworthy. An apology is about taking personal responsibility for things you now regret.

I am not unique in absorbing this life lesson. Clinicians who care for seriously ill and dying people regularly witness and embrace the importance of apologies in mending and maintaining personal relationships.

The same holds true for professional and business relationships. Whether you are a storeowner or regular customer, a boss or an employee, a physician or a patient, if you admit a mistake and express regret, despite the cost to your pride, trust in you is sure to grow.

Unfortunately, the associations that represent hospice and palliative care in the United States have not absorbed, or have chosen to reject, this relational wisdom. Last November, ProPublica and The New Yorker jointly published an extensive investigation into predatory business practices by several large, investor-owned hospice corporations that resulted in needless physical and emotional distress for thousands of seriously ill patients.

National groups, including the American Academy of Hospice and Palliative Medicine (AAHPM) and the National Hospice and Palliative Care Organization (NHPCO), at first complained about being unfairly treated by the press. Hospice News, a de facto communications outlet for the industry, ran an article asserting that “the few examples brought up by the New Yorker and ProPublica, are outlier cases.” After I and other senior figures in the field strongly criticized their defensive stance, association leaders pivoted to decrying instances of fraud and deficient care. But they notably avoided admitting any responsibility for this long-brewing crisis. Nor did they announce any steps to ameliorate ongoing risks to vulnerable patients and families.

After further internal prodding, in January 2023, NHPCO and three other national associations issued a set of 34 policy recommendations to Medicare and Congress aimed at improving oversight and hospice program integrity. AAHPM separately sent similar recommendations to Rep. Earl Blumenauer, a Democrat from Oregon, who had convened a roundtable on hospice oversight to address the issues raised by the exposé.

Three things can be said about these recommendations. First, they are all worthy of being enacted. For instance, they call on Medicare to develop “red flag” criteria for heightened scrutiny, such as multiple hospices co-located at a single address; a single administrator, patient care manager, or other leadership overseeing multiple hospices; and a hospice company that appears to be hidden behind a shell company. They also suggest Medicare impose a moratorium on certifying new hospices in states like California, Nevada, Arizona, and Texas that have seen an explosion of questionable hospice startups.

Second, many of these recommendations, such as requiring surveyors to confirm that hospices can provide all four levels of hospice care, including General Inpatient, and Continuous Home Care, could have been issued a decade ago.

Third, whenever an industry’s principal response to ongoing problems within its purview is to write Congress or Medicare, you can expect little to change.

Hospice, which began in the 1970s through mid-1980s as a grassroots movement and clinical calling, has become essential to American health care. Unfortunately, along the way, hospice has fallen victim to the greed that infects American health care. Well-run hospice programs can thrive on Medicare rates, which are currently $203.40 per day. But a hospice company can make more money by avoiding high-cost, acutely ill patients while enrolling those more likely to live longer and require fewer services. The New Yorker-ProPublica investigation exposed instances of some hospice companies which recruited patients who were not terminally ill, effectively depriving them of acute medical services. More generally, corporations that put profits first also employ fewer nurses, social workers, and doctors than are necessary to effectively care for patients and families with complex needs.

By the early 2000s, clinicians and administrators in the field all knew that the quest for margins over mission was taking a toll on the quality of hospice care. Worrisome trends were evident in Medicare utilization and program survey data, coinciding with the rise in publicly traded, investor-owned hospice companies. Most of us didn’t need data to know that things were amiss.

Throughout the 1980s and the 1990s, stories about a family member receiving hospice care were uniformly glowing. By the early aughts, those of us who were educating the public about hospice care began hearing different comments that were hard to ignore. “We called the hospice number because my father was in agony, and they sent me to the emergency room where he suffered more, before dying miserably.” Or: “My mother kept asking to see the hospice doctor, but we were told it wasn’t possible.”

The nation’s hospice and palliative care associations were once the vanguards of a social movement and driving forces for improving care for dying people within mainstream American healthcare. As the field succeeded, they became shackled by the investor-owned hospice companies that hold seats on their boards of directors and sponsor projects and conferences. Corporate influences have led to tepid responses to scathing federal and state government reports. Consistently missing are any expressions of responsibility or commitments to set standards and monitor the quality of hospice programs. Perhaps inadvertently, they have followed a public relations strategy commonly used by Big Oil and Big Chemical: Bemoan the befouling of the environment as if it were a natural disaster. Repeatedly assert the industry’s commitment to helping government fix the problem. Propose an anodyne set of public policy recommendations. Refrain from taking independent corrective actions.

Another corporate public relations strategy is reflected in the agendas of recent and upcoming national meetings. One might expect that preventing unethical business practices and ensuring high quality hospice care would be a hot topic. Instead, the AAHPM annual symposium was keynoted by a motivational speaker, addressing “What’s Going Well? The Question That Changes Everything.” NHPCO’s annual conference in October will open with another motivational talk, this one on embracing innovation.

Lest these choices appear innocuous rather than tactical, here’s a personal anecdote that peeks behind the public relations curtain. In November 2022, a few weeks before the ProPublica-New Yorker article appeared, NHPCO invited me to give the keynote at their October 2023 Leadership Conference. I suggested and they formally agreed to the topic and title of, “Can We Handle the Truth? Responding to Existential Threats to Our Field.” Two months later, they let me know that they had decided to go in a different direction.

As a founding member of both AAHPM and NHPCO, I’m a reluctant public critic. However, patient safety concerns demand public scrutiny. Rather than responding to this public health crisis, the hospice industry is managing this as a public relations crisis. Until national hospice associations and their for-profit provider members acknowledge their part in tolerating shoddy business and clinical practices, their lobbying efforts can be seen primarily as efforts to preserve the status quo.

There is a way forward. It shouldn’t matter what entity owns a hospice program as long as patients and families are well served. To begin with, we need increased government attention to program integrity and quality. The Centers for Medicare & Medicaid Services took an important step in January 2023 by updating training for hospice surveyors. Oversight and accountability processes depend on well-developed clinical and programmatic standards and meaningful quality measures. In April the U.S. Department of Health and Human Services began releasing ownership data for all Medicare-certified hospice agencies. (Instead of applauding this move, NHPCO wrote CMS recommending the agency “limit the extent of demographic and ownership information that is publicly available” until procedure challenges can be sorted out.)

Physicians have begun to speak up, independent of the health systems and companies we work for and the associations we belong to. In May, I was joined by 325 individual hospice and palliative medicine physicians, including 20 AAHPM past presidents, in publishing a statement of Core Roles and Responsibilities of Physicians in Hospice Care. The statement articulates basic requirements for safe and effective hospice care, and circumstances that should raise physicians’ concerns. It is intended to be a reference for fellow physicians, as well as for Medicare and private insurers, regulators, and legislatures.

High-quality hospice programs can be difficult for patients, families, and even professionals to identify. Simple ways for distinguishing good hospice programs from ones that are bad or merely mediocre would enable all involved to make informed choices. Cordt Kassner, a veteran hospice analytic consultant, recently retooled the public-facing National Hospice Locator to rank programs in each ZIP code by quality. It will evolve as new data sources are integrated in the quality algorithm.

We need credible industry groups to work with government, payers, and the public to repair the damage to hospice care. In a public letter to the New Yorker last December, the president of AAHPM wrote, “We will continue to fight for a system that allows patients and families living with serious illness to receive the care that they deserve.” This sentiment strongly resonates with me and many of my colleagues. As a statement of our field’s commitment, however, it would have been more believable if it had been preceded by saying, “We are sorry that we allowed this crisis to occur.” Because that is what responsible people do, and because without an honest apology, there is little reason for the public to trust us going forward.

Ira Byock is a past president of the American Academy of Hospice and Palliative Medicine and an emeritus professor of medicine and community & family medicine at the Dartmouth Geisel School of Medicine.