Fraud adds extra layer of worry to end-of-life care

Nathan Gray, a Professor at Johns Hopkins School of Medicine, authored a powerful comic strip illustrating the challenges facing doctors transitioning patients to hospice care - one of healthcare’s most critical end-of-life care options. Gray’s comic starts with an excellent perspective on why hospice is misunderstood: Hospice does not mean giving up. It means the current treatments may be doing more harm than good, and it means honoring the patient's wish to be at home.

He goes on to explain why healthcare has historically struggled with the hospice care option.

“Doctors...struggle to acknowledge that it’s time for a change in strategy, and entrusting

their patients in their final months to a new team can be difficult.”

Overcoming these barriers has been a challenge for decades, but recently, a new set of challenges are being faced by hospice. Confidence in the credibility of hospice care is being challenged by a series of powerful articles exposing fraud in the hospice sector.

What caused fraud to surface in the hospice sector? Changes to the payment model for hospice. Medicare decided to apply “coding” to hospice services. Medicare created “bundled payments” to make this service ‘more efficient.’ Bundled payments depend on the use of a complex coding system. Coding is not only complex, but it distracts caregivers from time with their patients. Miscoding can be fraud, so providers go through elaborate processes to document the codes being used. Manipulating these payment codes is very lucrative.

For profit healthcare focuses on coding to maximize revenues. For-profit healthcare has become increasingly interested in hospice because “bundled payment” and coding make hospice a new profit opportunity for those providers focused on coding and patient selection. Coding invites fraud because of its complexity. Coding makes no sense for a simple labor-intensive and low-technology service like hospice. Bundled payments have increased cost, not decreased costs.

The growth of fraud in hospice is another challenge that this important care option doesn't need. Fraud could be virtually eliminated in hospice by removing coding from their payment formula.

We need to simplify how Medicare pays for Hospice. We also need to simplify access to the benefit for patients. My book The Journey’s End offers pragmatic and comprehensive solutions to these concerns.

It's time we make dying at home easier

Sarah Romanelli, a geriatric nurse practitioner, wrote an important article about how difficult it is for families to care for someone at home. There are two powerful takeaways:

1. Research demonstrates that most individuals would strongly prefer to die at home. Yet, Medicare insurance will spend hundreds of thousands of dollars on ICU and other expensive coverage for futile care without a question and then pay nothing for the much more important and substantially less expensive home care that families need. This nurse has been recommending Hospice to her patients for years because it is their best care option. However, she learned firsthand with her 89-year grandmother’s death the cost to her family.

2. Hospice does not offer sufficient home care coverage for families. Sarah suggests that Medicare should restructure Hospice coverage to provide more home care. She then highlighted a legislative bill called the WISH ACT (well-being insurance for long-term care). This bill went nowhere because our Congress uses an incomplete approach to evaluating real costs. The Congressional cost analysis does not look at the savings they would have achieved by avoiding unnecessary hospital care because it is difficult to document. However, it is common sense that it would cost less for people to die at home than in ICU.

We should legislatively make it easier for individuals to die at home, because in aggregate it is less expensive and it is better care for the patient. My book, The Journey’s End, offers recommendations for solutions to this problem through changes to Hospice and Medicare. Research evidence demonstrates that these recommendations would save money for Medicare and improve end-of-life care for families.

What makes end-of-life care so interesting?

Many people have asked me why I wrote a book about end-of-life care. On the surface, the answer is simple: I've been passionate about this topic for decades.

But digging deeper, one wonders--what is it that makes end-of-life care so interesting? Now that question deserves additional reflection, and perhaps some priestly wisdom. And for that, I'd like to turn to none other than Ivan Illich.

For context, Ivan Illich (1926-2022) was a priest, philosopher, and social critic - quite the combination! But for me, he was an inspiration.

Back in 1976, I was fortunate enough to hear him deliver a special lecture at the University of Wisconsin-Madison, where I was a graduate student. At the time, Illich was an internationally recognized thought leader and was touring the US to lecture on his new book Medical Nemesis: The Expropriation of Health.

I remember the turnout for the lecture was extraordinary--perhaps one thousand were in attendance. The lecture was mesmerizing, and although his book was controversial, I knew I had to read it. This book has held a special place in my mind, and library, ever since.

It's a challenge to summarize any great thinker, but here is a representative example of Illich's thinking: “Technology can benefit many, yet, modern medicine has gone too far, launching into a godlike battle to eradicate death, pain, and sickness. In so doing, it turns people into risk-averse consuming objects, turning healing into mere science, turning medical healers into mere drug-surgical technicians.”

This is a profound observation about human nature and the limits of medical care. In many ways, this quote has been with me for 47 years. And while I could not have said it better myself, that did not stop me from trying with The Journey's End: An Investigation into Death and Dying in America. I can't promise it's as inspirational as Ivan Illich, but it will answer the question--what is it that makes end-of-life care so interesting?