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?

How we can overcome doctor burnout

Dr. Eric Reinhart’s recent New York Times guest essay, Doctors Aren’t Burned Out From Overwork. We’re Demoralized by Our Health System, makes three astute observations:

First, people are losing faith in our increasingly dysfunctional health system. Second, physicians are demoralized, feeling “helplessness and [experiencing a] loss of purpose.” Third, the billing system is to blame, dictating "...every aspect of medical practice, producing not just endless paperwork, but also subtly shaping treatment choices.”

We desperately need solutions to these problems. However, before seeking solutions we need to understand the cause of our problems.

After 45 years of working on all aspects of healthcare, my view is that coding and Fee For Service payment is the underlying problem. This payment model depends on volume of care not quality of care. This payment model does not compensate physicians for talking with patients nor does it compensate physicians for talking with one another about common patients. A payment system designed to push the volume of tests and procedures while discouraging conversation is our core problem. Conversations are a critical element of quality healthcare. Discouraging these conversations has caused both patients and caregivers to lose faith in the system.

The second underlying problem is a payment model that is based upon cross subsidization. The inequities outlined in this article largely stem from a cross-subsidized payments system. Specifically, some insurers pay slightly less than the healthcare provider's cost (Medicare), and some pay substantially less than a provider's cost (Medicaid and the uninsured). Meanwhile, commercial insurers pick up the difference. Providers are forced to control their mix of patients from these differing payment levels from insurers. This system obviously is not good for patients or providers. It requires providers to avoid poorly paying insurance - which means avoiding poor patients. Our payment model inevitably forces inequality.

Our coding system also forces cross-subsidization by treatments. Some treatment services like surgery pay well. Other treatment services like primary care pay poorly. The result is that surgery is easily available and primary care is not. Coding creates inequality by illness. This payment model is depressing for doctors and patients.

The third underlying problem is that the administrative requirements in healthcare are excessive and complex. Today, physicians spend 49 percent of their time on these administrative burdens compared to 29 percent of their time with patients. No wonder everyone has lost faith in the system. There are two primary causes of this administrative burden: one is coding and the second is fear of violating fraud and abuse regulations. Coding and fraud and abuse regulations today are so complex that a new industry was created to manage it: revenue cycle management. It is a lucrative business - last year we spent $140.4 billion on it. As a source of comparison, the entire US auto industry generated $100.4 billion last year. All this unnecessary cost is incurred because of coding and fraud and abuse documentation.

You might ask why we need fraud and abuse oversight. It’s because our payment model encourages volume and coding manipulation. Is fraud and abuse oversight effective? Based on the growing costs in healthcare, it doesn't seem so. I do know its regulations are extremely expensive. If we did not pay providers based on coding and volume we would not need coding or fraud and abuse oversight. If we didn't use this payment model, physicians would have time to talk with patients, coordinate care, and have a career doing what they spent so many years learning to do.

There is an alternative payment model. The solution is to have insurers pay the physicians a salary based on their expertise and quality. Virtually all other professionals are paid on this formula.

The mechanics of this solution is well beyond the scope of this letter. My forthcoming book, The Journey’s End: An Investigation of Death and Dying in Modern America, offers a more thorough explanation. Consider it a morale booster.