Many people struggle with the life issues and the small decisions that occur every day when one is dealing with an illness or a family member’s impairment. Whether financial issues related to the medical bills, attempting to make sense of insurance statements, trying to figure out who will walk a dog when going for a test or therapy, or just balancing a job schedule with appointments for doctors, the challenges are real and affect the quality of care and the cost of care. All this is true whether you have a critical illness, a chronic disease, or an acute “minor” problem (I always teach that a minor illness is something someone else has and that everything I or someone I love has is major).
Most attempts to address high health care costs do not address these small decisions that, in aggregate, have an outsized effect. Current paradigms in the quest to lower health care costs usually ignore this approach of addressing the small everyday life disruption of all illness. In the healthcare and health benefits world, we are told that focusing on the 20% of people who generate 80% of disease costs or people spending healthcare dollars in the last six months of life should be the focus. Yet focusing only on the 20% of people and those in the last six months of life means we ignore many who are in need and who are flailing around a confusing and often impersonal system. We are told that computer medicine driven by Dr. Watson from IBM is the answer and that the best doctor is a computer. But computers cannot comfort someone who is dying or understand that an evidence based guideline that requires one to have daily therapy instead of picking up children at school is untenable. Current paradigms often imply that the problem is that doctors don’t follow evidence based guidelines or patients are not doing what they should be doing. Yet assuming doctors don’t know what to do and that patients are not acting in their own best interest is likely to be an overly simplistic and false assumption.
We need new paradigms. Often the issues are a lot smaller. Like the man who could not go into the hospital for his worsening congestive heart failure because there was no one available to feed his cats, or the single mother who could not go to a specialist appointment for her worsening diabetes because she could not afford to lose another day of work since she had used up her sick time when her children had the flu, or the gentleman who went to the ER for a sore throat at 2 AM because his only free time while working two jobs is between midnight and 6 AM.
The right paradigms should address how to eliminate unnecessary health care costs and look at the world of health care through a patient’s eyes – a patient who has a family, friends and other priorities that are not health related. The right paradigms should look at what really drives doctors and patients to make decisions that may drive up costs and bring little or no value to patients and families. Perhaps the real answer is to create new ways to look at the problems.
In a recent post in Forbes, Elaine Shattner uses the term, “logistical toxicity” (first coined by Shelley Fund Nasso of the National Coalition for Cancer Survivorship) to describe the ill effects that the “administrative burden of healthcare” has on patient care and on cost. While the article focuses on cancer care the logistical toxicity is seen with all illness. These administrative burdens, and the competing life priorities that are often even more important, are difficult to manage when one is ill. Physicians and other health professions cannot be expected to help with these life issues as they are ill prepared to recognize and address those factors. Elaine Shattner in her post says,
“Chores – like processing medical bills, holding on the phone for providers, filling out and submitting paperwork to insurers – can chew at a healthy person’s time, causing annoyance. For someone who’s chronically ill, these tasks and additional, long-term responsibilities – coordinating frequent medical appointments, and arranging for time off at work, and for childcare or caregiving of another adult – compound the physical and financial toll of disease.”
It also goes beyond the chores themselves. Those increased burdens and those competing life priorities create tremendous emotional turmoil and can cause a sense of social isolation. One feels as though there is no one to help, because the benefits and the health delivery systems have become so disjointed that they cause headaches instead of help. As Ms. Shattner says, “The potential failure to take care of everyday tasks can lead to feelings of defeat or helplessness, besides exhaustion.” Your doctor does not really understand your health benefits, and may or may not even ask you about the life challenges that are getting in the way of the treatment of your illness – that logistical toxicity. Your healthplan is willing to help you understand your benefits and claims, but not deal with the life issues that are sitting in the background affecting everything else.
When we started Accolade, we realized that the health care system had become so complex and so difficult to deal with that it could be dangerous to people’s health and could actually increase costs. As we looked into the problems from a patient’s point of view, we found two parallel systems at play – a health benefits system that was attempting to put incentives, rules and regulations in place to police care, and a health care delivery system that was attempting to become more efficient and of higher quality by a division of labor approach in which higher paid team members, such as physicians, were only involved in activities that made the most of their expensive time. The algorithms driving care were designed to prevent errors and theoretically improve care. However, from the patient’s point of view, all this created fragmentation and a movement towards “one-size fits all” medical and health benefits approaches with its associated depersonalization. If you didn’t fit in to the rules and algorithms, you suffered. The paradigms for efficiency, we found, were often contributing to inefficiency and lower quality care from the patient’s perspective. Those paradigms that were being used were often not helping people in need.
We decided to create a new approach and a new profession based on a belief that all people with illness of any type need help, not just those people with high cost complex illness. Our hypothesis was that costs would be lowered by immunizing against logistical toxicity, and supporting people through the emotional roller coaster that is associated with illness. We tested whether we could impact the changes in the social structure of family and the life challenges that are associated with illness of any kind. All illness, even “minor” illness can be disruptive and interfere with life context while inducing fear, sadness and anger. So we built databases, trained professionals to deal with this toxicity, and developed operational processes. In a sense we went about building immunization, antidotes and treatments for logistical toxicity and the social and emotional toll it takes. We knew that this was not a simple problem but something that demanded a new profession based on trust, with specific expertise and the support of proper data and information systems.
We determined early that just solving the problems as they occurred would not be effective. We had to provide ongoing assistance to help people avoid these problems in order to be able to solve issues early so their toxic effects would not multiply and become petrified and even more difficult to reverse. We learned that when people are faced with logistical toxicity, they develop suspicion and lose trust in the system to a point at which it is hard to overcome. We found that we had to form trust early in the process and even before the problems occurred. In the 8 years since starting this new model, we have proved it works – costs are lower and from a patient’s point of view, care is better.
I am fundamentally optimistic about health care as long as we continue to challenge existing paradigms. I believe that our initial experiment at Accolade, and other similar approaches that address patients as people and not diseases, will become the norm. New professionals will help address all of the challenges of illness, not only the disease pathology, providing value from a patient’s point of view. We will continue to find new approaches that will eliminate the scourge of logistical toxicity. Most importantly, we will not allow health care to become so rigid that it ignores the infinite tapestry of our diverse population and the unique life issues that each person brings.