One day while I was rounding in the hospital, a physician described her patient as having “the dwindles”. That wasn’t a medical term I’d encountered, nor have I heard others use it since, but I adopted the notion. In pediatrics, failure to thrive describes children who are not developing adequately. In adults, we don't compare growth and functioning from one visit to the next, failure to thrive is often missed until the patient has become frail. The arc of life sets us all on a path to the dwindles, but doctors often don’t appreciate how much we cause the dwindles.
Modern medical technology has increased longevity, but often at a price of reduced personal fulfillment and loss of physical functioning. For instance, interventional cardiology and statins have greatly reduced mortality from coronary artery disease, only to increase the prevalence of heart failure. Instead of dying from heart attacks, patients survive but with a diminished capacity to exercise. This is common with many chronic conditions, often leading to disability - a sobering side of the dwindles.
Researchers have semi-quantitated the integration of cognitive and physical functioning in measures like activities of daily living, created many methods to assess quality-of-life (QoL), measure the burden of chronic disease in quality-adjusted-life-years (QALY) or years lived with disability. But in clinical practice, I’ve rarely heard talk about how a particular clinical choice affects QoL or QALY.
Some have posited that assessing QoL is too complex to be simply quantitated, that it is impossible to compare widely disparate aspects of life, makes invalid assumptions and that QoL might be used as another biometric to restrict access to care. Very valid points, all, but these arguments miss the issue that we are not even asking the question “What can I do (for your health) that would make your quality-of-life better”?
Medicine needs to address QoL much earlier in the arc of life, when patients progress to the dwindles phase. Too many QoL discussions are end-of-life discussions, or with patients who are well along the pathway to a nursing home. Senior centers and assisted living facilties work to maintain QoL, but poorer folks often have no such resources. With the epidemic of diabesity (diabetes & obesity), there are many surprisingly young adults who are disabled and on Medicaid or uninsured and who have no resources to help restore QoL.
Is QoL Beyond Monetary Valuation?
Is QoL so precious as to be priceless? Maybe. People talk in generalities about this topic, and a very common sentiment is: “If can’t have a good quality-of-life, I would rather be dead”. The problem is that doctors are very skilled at keeping patients from making it all the way to dead. In abstract discussions, people think about this issue in a binary mode (life in the present state -vs- dead), but the reality is that chronic disease and disability can be a slow and dreary decline.
Few people want to go on after they’ve lost the ability to take care of themselves. Parents especially resist becoming a burden and financial strain on their children. But almost everyone makes compromises, ever so gradually, to become a shell of his or her former being. There is much concern about cognitive decline, but loss of physical functioning is just as concerning. Much of this diminution in physical functioning is not necessary - especially if our health care system were designed to guide the patient to an appropriate exercise program.
We need to do better at preserving traits that keep patients out of the nursing home and physically capable of doing all the things they need or want to do. An important part of chronic care management is a discussion about preserving fulfillment, self-determination and independence. Special emphasis should be placed on how the patient’s chronic conditions impact those issues, and what can be done to protect and preserve QoL. Such discussions need to happen long before a patient is a nursing home candidate.
Why QoL is Missing From Health Care?
Why are so few patients who have diabetes or heart disease referred to rehabilitation programs, programs known to be among the best values in health care, that guard against further losses of fulfillment, self-determination and independence?
Why are the allied health professionals who trained to do this work – physical and occupational therapists, nutritionists, social workers, clinical exercise physiologists, psychologists – so underused and many of these professions so underpaid?
Why are disease self-management education programs often run by lay person volunteers and funded on short-term grants, rather than being provided in a stable model of commerce that pays allied health professionals for what they learned to do in graduate school? I’ve personally met several dietitians and exercise physiologists to became drug reps simply because they couldn’t get a good job doing what they were trained to do - this in an era where healthy diet and physical activity are key interventions for obesity and diabetes.
The root cause of these gaps in care is that our reductionist medical model pays to maintain a proper molecular milieu, but pays little-to-nothing for preserving QoL. The biopsychosocial model of disease has devolved into a de-facto reductionist biotech model, all but ignoring QoL. Well, all except for TV ads and spam emails for medications to treat erectile dysfunction...
The sad truth is that our health care system assigns negligible value to the central aspect of health and well-being - quality-of-life. Volunteer-led psychosocial programs for disease self-management education, most of which are helpful but underfunded and underused, are a patchwork that serves to cover over our health system’s enormous gap in not caring about QoL. We’ll pay for managing biometric outcomes - blood pressure, A1c, medication guidelines - but won’t pay a dime for preserving that element of health most people consider to be priceless.
AS Kelley, K McGarry, S Fahle, SM Marshall, Q Du, JS Skinner. Out-of-Pocket Spending in the Last Five Years of Life. J Gen Intern Med, 2012; DOI: 10.1007/s11606-012-2199-x
US Burden of Disease Collaborators. The state of us health, 1990-2010: Burden of diseases, injuries, and risk factors. JAMA 310(6):591-606, 2013. DOI 10.1001/jama.2013.13805
JS Wyatt. What's Wrong with Quality of Life as a Clinical Tool? J Ethics 2005; 7(2). http://journalofethics.ama-assn.org/2005/02/pfor1-0502.html (accessed 11/22/2016)