The for-profit sector of the industry too often does not live up to the hospice promise of profoundly personal and compassionate care.

As established by the great medical humanitarian, the late Dame Cecily Saunders, hospice was designed to treat “total pain” of patients — whether physical, emotional, or spiritual — to the end of ensuring that the care offered is about living, not just death. When it works as intended, as it did for both my parents, the beneficence offered to patients and their families cannot be quantified.

Alas, the hospice movement is in serious trouble. I can’t tell you how often now people approach me after a speech or call in on talk radio to tell me that they do not trust hospice to properly care for their loved ones.

Why has this happened? My friend Ira Byock, the great palliative care doctor and author of Dying Well, has noted that the for-profit sector of the industry too often does not live up to the hospice promise of profoundly personal and compassionate care. Also, there is a problem with fraud and abuse, about which, Byock insists, there must be institutional “zero tolerance.” In addition, the integration of palliative care within the American health system has stalled, despite demonstrating that quality care for seriously ill and dying people is both feasible and affordable.

And from my perspective — not Byock’s — the assisted suicide movement has been a body blow to the hospice movement. Partly this is because the media is so besotted with “aid in dying” propaganda that there is little room left to tell good hospice stories. But I also blame institutional hospice organizations, which pretend that assisted suicide isn’t a mortal threat to the hospice philosophy. As a consequence of this institutional cowardice, all one hears from hospice organizations about legalizing assisted suicide is the proverbial sound of silence, further diminishing the importance of the sector.

Byock isn’t just complaining. He has authored an extensive white paper setting forth a specific plan for reform to remedy this most unfortunate crisis. First, he identifies the problem. From “A Strategic Path Forward for Hospice and Palliative Care,” published in Palliative Medicine Reports (citations omitted):

Fueled by Medicare reimbursements, hospice quickly grew from a social movement in the 1970s to a mission-driven nonprofit community service, and then to an industry. In the first years of the 21st century, anecdotal instances of problems with hospice care gradually became more frequent. By the mid-2010s, accounts of hospice patients being poorly treated or neglected were no longer uncommon. Government oversight agencies, such as the Office of the Inspector General (OIG) of the U.S. Department of Health and Human Services, began reporting alarming numbers of hospice programs with dangerous structural or operational problems. In its 2019 report entitled, “Hospice Deficiencies Pose Risks to Medicare Beneficiaries,” the OIG found that among 4500 hospices, nearly 20% had one or more serious deficiencies and over 300 were poor performers.

Byock offers four remedials. The first is to publish clinical and programmatic standards:

Standards provide the basis for meaningful evaluation of quality and accountability in hospice and palliative care. Without operational specificity—including minimum staffing ratios, training hours, and response times—existing published guidelines fall short of what this strategy requires.

Second, make meaningful data readily available:

Data and measurement allow assessment of performance against published standards. Accessible, reliable, and user-friendly public-facing data enable patients, referring providers, and payers to make informed choices.

Third, drive competition based on quality:

Currently, financial interests dominate competition in hospice and palliative care. Reorienting market success to align with measured quality of services and patient–family experience is essential. For-profit and nonprofit providers alike must compete by delivering demonstrably excellent care.

Finally, promote the authentic hospice experience:

Public perceptions are of prime importance to quality-based competition. The field is distinguished by intentionally fostering well-being for people it serves. In embracing this distinctive identity, hospice and palliative care can establish itself as an essential service for people with serious illness.

There is much more to this important paper than I can offer here. I hope you will take the time to read it and that the industry takes heed and begins the necessary process of reform.

Postscript: I interviewed Byock about the hospice crisis a few months ago on my Humanize podcast. For a deeper dive into these matters, take a listen.