Unfortunately, that is extremely rare today.
Too often, patients with a serious illness find themselves in and out of emergency rooms and hospitals, juggling a confusing array of medicines prescribed by different physicians, chaotically bouncing back and forth to doctors’ offices, on average 29 times in the last 6 months of life. This is not for lack of dedicated clinicians or even a lack of insurance. No, it is explained mostly by the historical anomaly whereby our American health care system has evolved on a rigid fee-for-service backbone. This payment mechanism promotes care fragmentation and discourages team-based, person- and family-centered care, provided conveniently and more affordably at home for those with serious illness. In addition, our health care system continues to emphasize treatment for acute illness rather than quality of life.
The great news is that today we are at an inflection point where a more rational and successful system of care is possible. And some pioneering, independent initiatives are leading the way to bring a sense of order and reason to the care experienced by those with advanced illness. It is called community-based palliative care.
Life’s journey, simplistically viewed as a series of chapters, requires different sensitivities and types of care during each chapter. The final chapter, wherein death is certain and imminent, usually lasts days or weeks and is best addressed with hospice care. Thankfully, a mature hospice network is in place across the country today to meet the needs of most patients at the very end-of-life. However, with the explosion of chronic disease over the past two decades, most apparent in our aging population, it is the chapter just before that final chapter that has the worst gap between what patients need and deserve, and what they actually experience.
A 2015 New England Journal of Medicine article noted that, over the past decade, palliative care program access has increased 150%, with availability in almost 90% of large hospitals of more than 300 beds and in two thirds with 50 or more beds. Palliative care has been formally recognized by the American Board of Medical Specialties, and in 2008, the Accreditation Council for Graduate Medical Education began accrediting medical fellowship programs in palliative and hospice care. But most Americans are still unaware of palliative care, and even most physicians do not fully understand what this new specialization of care encompasses.
The superior value of palliative care for patients with serious illness has been demonstrated in myriad studies. For those with cancer, not only is satisfaction and quality of life markedly improved, but for some types of cancers patients actually live longer. But palliative care today is for the most part limited to hospitals and their immediate surroundings. A few hospices have tried to expand their services into the palliative care arena, but they have met only limited success because the nature of practice is so different. So today community-based palliative care is almost nonexistent. Yet it is in the community where the need is the greatest!
Palliative care is not hospice. Although many patients who benefit from palliative care are eventually transferred to hospice to live out their last months or weeks of life, patients do not have to give up diseased-focused therapy when they enroll in palliative care. Palliative care focuses on treating the whole person—not just the disease—with a team of caregivers that generally includes a specialty-trained palliative care physician, nurse or nurse practitioner, social worker, and chaplain. It emphasizes long-term shared care planning and improving a patient’s quality of life.
In the last three decades, a number of hurdles have stood in the way of bringing palliative care to the forefront of accepted medical treatment. A 6-year study conducted by the Robert Wood Johnson Foundation in the 1990s to better understand dying in the U.S. found that many doctors did not even know their own terminal patients’ care preferences. We physicians traditionally have been trained to treat acute illness and to never give up on a patient; to tell a person that they are out of treatment options is to admit defeat. This mentality has led many patients who would prefer to spend the last months or years of their lives in the comfort of their own homes to instead spend precious hours and resources being shuttled in and out of hospitals for tests and procedures that are often futile, and almost always inconvenient and chaotic. Tellingly, surveys have shown that physicians themselves would not choose the rigorous treatment regimens they prescribe for their seriously ill and dying patients.
Bringing Back House Calls
To address this egregious gap in our health system where people with chronic disease continue to be uncomfortable and inconvenienced, leading to confusion, chaos, and costly care, some exciting and transformative independent initiatives have emerged, an example of which is Aspire Health. We founded Aspire almost four years ago to specifically address the needs of individuals in this next to last chapter of their lives. Today, Aspire is the largest non-hospice, community-based palliative care organization in the country.
Aspire’s formation was the product of an opportune convergence of two narratives, one my own and the other, and far more important in terms of strategy and execution, is that of Brad Smith.
Brad and I had worked together before. In 2009 we started what since has become a nationally recognized nonprofit to improve educational opportunities for Tennessee children, called the State Collaborative on Reform of Education (SCORE). Brad, always interested in the intersection of policy, public service and social good, then spent the next two years working in state government.
In 2013 Brad’s brother was in medical school conducting research on home-based palliative care with Harvard’s Atul Gwande, and his brother’s research struck a strong chord with Brad. Around the same time, Brad’s grandmother was dying, and this very personal experience put in clear perspective the challenges that face nearly every family in navigating the complexities of end of life care. Brad saw that cutting-edge research was demonstrating the valuable benefits of palliative care for patients and their families in hospitals and he believed that the same service should be available in communities, and especially in homes, across the country. He saw the gap between what patients wanted and needed and what they were experiencing. So at the age of 31, he set out to lead the way.
Meeting the Needs of Transplant Patients
The second story line was my own. My conclusion that those in the last chapters of life were being left behind was, naturally, based on my personal experience with thousands of patients I cared for with advanced heart and lung disease over my 20 years in medicine. This was coupled with the health policy perspective of 12 years in the U.S. Senate, aware of the limits of what government realistically can and cannot do. As a child I loved making house calls with my dad. As a physician practicing from the 1930s through the 1980s, Dad tailored his clinical practice around caring for the aged, especially those with advanced heart disease. He was on President Dwight Eisenhower’s first commission on aging, started through our church a senior living home, and later founded American Retirement Corporation, a nationwide network of assisted living centers, later to become Brookdale, Senior Living Solutions. His consistent, lifelong, driving passion was his love for caring for seniors, and I felt it as a child.
My own focus on those with advanced chronic disease grew through processes we developed to care for the many hundreds of seriously ill patients referred to me in the 1980s and 1990s, initially at Stanford and then at Vanderbilt, for either heart or lung transplantation. All had a terminal diagnosis, with an expected survival of less than six months. We developed specialized, highly integrated clinical teams that included nurses, chaplains, social workers, nutritionists, and ethicists—all focused on the patient and their family. With this new approach built around the desires and wishes of the patient, we saw these seriously ill patients dramatically improve, become pain free, and live better and more fulfilled lives, even though they had a “terminal diagnosis.” Interestingly, after we performed the transplant procedure, we continued this new palliative approach postoperatively long after discharge to home since the individual would continue with a chronic condition of lifelong surveillance for infection and organ rejection.
The movement of palliative care was just in its infancy in the 1980s when we founded the Vanderbilt Multi-Organ Transplant Center, but we witnessed then how much better our patients fared if we together discussed their expectations and together outlined a treatment plan that addressed all possible outcomes including death. Preparing them mentally, emotionally, and spiritually—not just physically—was essential to success in those early days of lung and heart transplantation.
So it was a simple question: If this was the standard we found so valuable for patients with advanced chronic disease awaiting transplant at Vanderbilt, why 30 years later was it not available to the millions of others with equally serious illnesses who were living in communities far away from inpatient health centers?
Building a New Model
And here is where Brad’s narrative and mine converge. One day in the fall of 2011, Brad came to me with a detailed proposal for launching a home-based palliative care company and asked me, “Would you be willing to partner together to take this challenge on? Government can’t do it, no non-profits have the scale to do it, and the private sector today is not doing it, but I believe we can do it.”
I immediately said yes, and we spent the next year taking Brad’s proposal to 20 of the leading healthcare minds in the country to see if it had legs. Without exception, they agreed that the model was workable and that the real challenge would be overcoming the fee-for-service structure which incentivized fragmented and disjointed care. But what was most remarkable was that each person we spoke to had a personal story. Each listened to Brad’s proposal, then immediately shared their own personal story of a death in their family that was difficult, sometimes painful, oftentimes expensive, and almost always emotionally taxing.
Aspire has demonstrated it can substantially improve the lives of those with advanced disease. In less than four years, Aspire Health has grown from an idea to now serving communities in 24 states and 58 cities. Over this period, the company has served more than 30,000 patients and is currently on a pace to complete over 150,000 home visits this year alone.
Aspire Health is successful because it taps into a real patient need and void in the larger healthcare system. Most individuals don’t know the word “palliative,” so we describe ourselves as a “house call physician practice” available around the clock for persons who are battling cancer, suffering from multiple hospital readmissions, or living with a debilitating chronic illness. We send doctors and nurse practitioners to patients’ homes to guide them and their caregivers through difficult and complex treatment choices, aggressively manage symptoms, and provide emotional and spiritual support. By meeting the patient in the home-setting, we get to know them and their families, and we build trust that is vital when tough conversations arise, or chronic or terminal conditions get progressively worse. Communication is key. We listen to our patients, and it allows us to deliver the care they want, which typically means helping patients stay at home and out of the hospital. When we talk to patients we find it is quality of life that often matters most: being able to attend a graduation or be present at Christmas or spend more time with the grandkids. With the elimination of unnecessary trips to the emergency rooms and hospitals, it’s a lower cost model of care, but that’s never the main point of what we do. Our focus is giving people the care, respect, and compassion that they deserve.
Aspire is successful because it can wrap its comprehensive services around those specific patients who will benefit. That requires sophisticated analytics and use of information technology. We identify our patients by partnering with health plans—including Aetna, Anthem, Cigna, Humana, several large BlueCross plans, and a number of smaller regional plans—that are at risk for total cost of care. Aspire’s intervention achieves exceptionally high patient and family satisfaction, with an average patient satisfaction score of 4.8 (on a 5.0 score) and is reducing hospitalizations by over 50%.
System Shortfalls and Next Steps
Changes must be made to our medical system to ensure that everyone who might benefit from a palliative approach has access.
First, we need more medical students to choose a palliative or hospice specialty. Right now, it’s estimated we have a shortage of 6,000 physicians in this field, and the demand is growing as the Baby Boomer generation ages. Palliative care needs to be a central part of the medical education our future doctors, nurses and caregivers receive.
Second, we must incentivize our physicians to have difficult but meaningful advanced care planning discussions with their patients. We cannot expect every one of these conversations to be conducted by a palliative specialist, so we must equip our oncologists, cardiologists, neurologists, and others, to approach patients with compassion, but be willing to pose tough questions. Medicare recently began reimbursing doctors for in-depth conversations with terminally ill patients, which is a step in the right direction. Other insurers should follow suit.
Finally, we must accelerate the restructuring of our reimbursement system to pay for team-based care in the home setting that prioritizes the quality of life of the individual. Aspire is a success because we meet the patient where they are, and take an approach that cares for the whole person. But spiritual counseling or a visit with a social worker, for example, currently doesn’t have a medical billing code. Fortunately, we believe this will increasingly be covered as care transitions to value-based care. Some of the alternative payment models the Center for Medicare and Medicaid Services (CMS) is piloting, such as the Oncology Care Model, allow for palliative care to be within the bundle of services that is reimbursed, and there are also several advanced illness care payment models currently being considered by CMS.
We all want to spend our final chapters comfortably and happily, and it is time to close the gap between what we want and need, and what we actually experience. Community-based palliative care is the solution, and we must continue to increase its accessibility and affordability for the millions and millions of patients who it can benefit.
This article originally ran at Forbes.