More care, better care. Is there a difference?
Healthcare delivery in the United States— it is overly complicated and heading in the wrong direction. Theresa Brown RN, in her letter to the editor of the New York Times1 uses the institution of barcode scanning for patient medication administration to illustrate this important point. She reveals that barcoding, like other purported safety- and efficiency-enhancing measures, perpetuates and further complicates an inherently flawed system whose complexity is highlighted by need for workarounds.
Short cuts in care? The workarounds are necessary, she explains, to serve and care for patients in real-time but they add other burdens, risks and cost to an inefficient system that is already lacking value; the US healthcare system is known to be inferior to those of other developed nations when it comes to outcomes. Nurse Brown reminds us that, “The United States spends more per person on health care than any other industrialized country, yet our health outcomes, including overall life expectancy, are worse. And interventions like bar code scanning are a drop in the bucket when it comes to preventable medical mistakes, which are now the third leading cause of death in the country. Our health care nonsystem is literally killing us.”
Who is at risk? Anyone could be at risk from preventable mistakes, but those who are most frail (those with dementia, serious or terminal illness) are necessarily most at risk. They spend more time in the healthcare system and have the least capacity to tolerate additional physical burdens brought about by adverse events and complications. These individuals have the lease ability to advocate for their own care. Thinking more broadly about our most vulnerable patients, any list of preventable medical mistakes surely includes the delivery of care (treatments and interventions) that are in excess of what is wanted or warranted. How do we recognize unwanted care? These excessive and burdensome treatments or interventions are not tied to patient-centered goals.
Let’s define patient-centered goals. Medical treatments are developed with specific outcomes in mind. Take for example a new blood pressure medicine. This new medication will be studied and reviewed for its efficacy (whether or not it actually lowers blood pressure) and also for its safety. It will be evaluated in terms of its potential toxicities and side effects. Whether or not it is deemed to be a safe and effective treatment will depend on the outcomes of these studies which are designed to look at measurable targets, things like blood pressure levels. The studies will also look at other medical outcomes we know to be linked to high blood pressure; these include cardiovascular disease and stroke. A person who takes the blood pressure medication will do so to achieve certain goals. They will want the short-term outcome of lower blood pressure and the long-term outcome of avoiding cardiovascular disease and stroke. These outcomes (goals) are medical events. In contrast, patient-centered goals are defined by the patient, not by the healthcare system. Patient-centered goals are individually or family-oriented. In this scenario, for example, a patient-centered goal might be to avoid bothersome side effects of a new medication or to maintain a sense of health and well-being or to feel well while leading an active life, despite having high blood pressure.
When stakes are high. Most people agree that serious disease warrants aggressive care. We accept that some care and treatment is accompanied by serious or harmful side effects and higher risk for lasting harms. Presumably, we take these higher risks in order to achieve successful eradication or management of the serious disease. In other words, the hoped-for outcome is to sustain and prolong life. In this setting, we often sacrifice some level of quality of life, at least temporarily, in order to achieve the desired outcome. Cancer care fits into this pattern. Many forms of cancer are now treatable. But the treatment is often tough and associated with high risk. People who are younger or more robust often respond and do well with treatments that are burdensome or toxic. But what about those with serious, advanced, or terminal illness? These frailer folks (those with serious illness, terminal illness or dementia) cannot expect the same outcomes as their younger or more robust neighbors can. When time ahead of us is shorter or when treatments bring excessive burdens, patient-centered goals should take center stage in guiding choices in care.
The importance of perspective. In a healthcare system such as ours, overly burdened by inefficient processes and their contingent workarounds, where preventable and potentially lethal medical errors regularly occur, the frailest patients are the most at risk. Healthcare delivery systems roll along in ways that make it very easy to lose sight of Why we do What we do. Patients with serious illness or terminal conditions, even dementia, are often on a conveyor belt of care. That conveyor belt leads directly towards specific system-defined outcomes: disease eradication or suppression, or management. In their sincere attempts to save or treat people, providers often fail to consider the role of patient-centered outcomes. They forget to consider, “Why are we doing this?” In the face of advancing or terminal illness, the patient’s perspective becomes ever more important. Sadly, it is often less likely to be sought out or to influence the choice of treatments once someone is on a conveyor belt of care. This results in avoidable suffering for the individual, their family and often for the medical team providing the care.
See part two of this blog for information on How to Prevent Avoidable Suffering in Serious Illness or at End of Life.
Brown, T This American Medical System Is One Giant Workaround New York Times September 5, 2019 https://nyti.ms/2m223bC