Nanette Elster, JD, MPH
Bioethicist and octogenarian Daniel Callahan wrote an op-ed in the New York Times this week about society’s quest to extend life. He opined, “Adding years to a life doesn’t necessarily make it any fuller.” I understand Callahan’s view. I recently assumed the role of healthcare power of attorney for an elderly relative who suffered a traumatic brain injury compounding a previously existing dementia. I have posed a similar question to Callahan’s observation to every healthcare provider I have encountered during my relative’s most recent hospitalization. Test after test to identify the reason for his weakness and the cause of his exacerbated confusion have yielded no answers, yet there is still the push to keep looking. I keep asking, “why?” Will finding a cause allow us to reverse or alter the outcome? I am consistently answered with “no.” So, do we really need a diagnosis if there is no treatment let alone a cure?
In just a few short months my relative has gone from an active, albeit dour man, who exercised five days a week, volunteered at a local animal shelter and ate more chocolate than Willy Wonka to an emaciated shell of a person wearing adult diapers, having his food cut up for him, and unable to walk unassisted. I cannot help but wonder what is enriching his life now when every minute of every day he needs assistance to do even the simplest task, when in his seventies he has become so infantilized that nurses are singing childhood nursery rhymes to him and doctors are referring to him in juvenile terms like “buddy,” or “pal.”
All of the technology and pharmacology available today will not bring back his shrinking brain tissue, yet hundreds and thousands of dollars and hours and hours of physicians’ time are being expended in a quest to identify why this is happening to him. It becomes abundantly clear why our healthcare system is in such a morass. As his surrogate decision maker, I feel a great responsibility to make decisions that he would make if he were capable, but the truth of the matter is that he is not capable, nor is it possible to imagine what he might want to do in a situation that he had never experienced when he had capacity and likely never even contemplated prior to executing his advance directive. His body and his decision making are no longer controlled by him but by others.
Beyond the never-ending quest for answers or simply doing nothing, the doctors have not offered any other courses of action–a middle ground –a solution that may allow his disease to make its natural progression. This middle ground does seem to exist but is in its infancy according to a recent article by Jonathan Rauch in The Atlantic, entitled “The Hospital is no Place for the Elderly.” Rauch asserts that “For years, many people in medicine have understood that late-life care for the chronically sick is not only expensive but also, much too often, ineffective and inhumane.” The article then goes on to discuss an approach that is more integrated and multidisciplinary, with the goal of avoiding hospitalization. Rauch argues for home-based care with a treatment model that “begins from the counterintuitive premise that health care should not always be medical care.” Instead this model focuses on the person and that person’s needs and goals.
Will this model take hold? It is hard to say especially given that as a society we are so driven by biotechnology to extend life that we seem to have lost sight of finding ways to give that life meaning. This obsession with technology has medicalized the aging process, not to mention the dying process. And, given that we have already medicalized the birthing process, how far must we go before we have medicalized the entire process of living? We know that the last years of life tend to be the costliest from a medical perspective. According to the Dartmouth Atlas of Healthcare, “Patients with chronic illness in their last two years of life account for about 32% of total Medicare spending, much of it going toward physician and hospital fees associated with repeated hospitalizations.” This does not include the dollars that the patient might additionally be paying out of pocket. The question we must ask ourselves not only as a society but as surrogate decision makers and caregivers is whether hospitalizations and medical interventions are the best use of these resources. While extending life is generally a good thing, we need to reflect on whether it’s always a good thing. If those extra days or months are not extra days of interacting with life and loved ones and are instead days being poked and prodded, medicated and losing one’s sense of dignity, should we reconsider how we respond to the processes of aging and dying? Daniel Callahan’s hope is one that I as a mother, caregiver, and a middle-aged adult also share: “We may properly hope that scientific advances help ensure, with ever greater reliability, that young people manage to become old people. We are not, however, obliged to help the old become indefinitely older. Indeed, our duty may be just the reverse: to let death have its day.” After all, this might be the ultimate balancing of autonomy, justice, and beneficence.