The notion that death and old age are beyond our control, and that sometimes we need to let go sounds archaic– Of course, it does. We live in a world that is highly technocentric, and the thought that “we are all going to age and die one day” has lost its value. This value loss is even more pronounced in biomedicine. Over the years, biomedicine has come to be dominated by a mechanical system of treating patients. Doctors are trained to see patients as fixable bodies. The practice of medicine should be situated at the interface between treatment and quality of life, but the balance of health care has shifted disproportionately to “treatment no matter the cost.” This imbalance is particularly evident in medical fields that mostly deal with terminal illnesses– such as oncology– where medical interventions are focused on treatment, leading to an accumulation of toxins until the body succumbs. Modern health care fails dying patients because it tries so hard to fix the unfixable– death. As Dr. Gawande explains in “Being Mortal,” this futile effort only prolongs the decline of patients and turns final days into nightmares. A good approach should weigh both the benefits and cost of treatment. As Dr. Gawande says doctors should help patients to think about “What do we forego?” by following treatment. But before we go deep into the failures of biomedicine, let’s first define quality of life and how we can maintain it for dying patients.
Quality of life is best understood when looking at the hospice model of patient care. The hospice model is not focused on physical symptoms or drug-mediated pain relief; instead, it focuses on all dimensions of human suffering. This approach addresses physical pain, but it doesn’t stop there. It also sees all the psychological and spiritual distress that comes with it. Even when pain is unappeasable, there is just so much that this model can do to help a patient feel good. The hospice model “is a shift in perspective…turning anguish into a flower” as Dr. BJ Miller explains in his Ted Talk. For example, at the Zen Hospice where Dr. BJ Miller works, the most “poignant room” is the kitchen. In this case, the kitchen provides sustenance and beauty. Even though terminally ill patients usually can’t eat or smell, the kitchen provides aesthetic gratification, “rewarding patients for just being.” “Yvonne”, a nurse working for Ascend at Chestnut Ridge, also mentioned “my primary concern is to make sure that [a patient] is happy, safe, and comfortable…and ask questions… How is the air in the room?… Are you well hydrated?” All this shows how subtle things that pay attention to our senses (e.g. good smell in a room), our connections (e.g. how is your family doing?), our spirituality (e.g. would you like the last sacrament), and our culture (e.g. holding a Mardi-Gras party) can go a long way in improving our experience with death. I believe that this is the right way of caring for dying patients, paying attention to their humanity. It all starts within medical schools: an education reform that views a patient as a whole (i.e., soul, feelings, and body) not just the host of a disease that needs to be eradicated at any cost. The only way that hospitals and/or doctors can address their unintended dehumanizing effect is by adopting the hospice model of patient care.
Going back to the failures of biomedicine: the prioritization of medical technology and aggressive interventions is often perceived as an objective way of addressing illnesses, rather than a reflection of biomedicine’s cultural system. Janelle Taylor, in her article “Confronting Culture in Medicine’s Culture of no Culture,” describes medicine as a practice that perceives itself as objective and non-cultural, “a culture of no culture.” Taylor argues that biomedicine has a culture of disconnecting a patient from his/her experience with an illness, in search of disease agents (Taylor 2003, 557). Lydia Munoz, Reverend at Swarthmore United Methodist Church, during an interview, told me that patients are often treated like pieces of machinery, as though they don’t have souls. She said that when a patient is screaming of pain– for instance due to cancer– hospitals give them drugs (Interview, Dec 8th, 2021). She believes that drugs/painkillers are imperative to healing a patient and reducing pain, but biomedicine should also attend to a patients’ soul, which is also targeted by pain. Dr. BJ Miller draws a morbid picture of a hospital’s “floodlit room lined with tubes and beeping machines and blinking lights that don’t stop even when the patient’s life has; the cleaning crew swoops in, the body’s whisked away, and it all feels as though that person has never really existed…the most we might hope for within those walls is numbness– anesthetic, literally the opposite of aesthetic.” Dr. BJ Miller’s answer to pain is not anesthetics which only “numbs the body” but aesthetic gratification which attends to the soul, something that Pastor Lydia agrees with. Taking care of the soul means addressing pain not by injecting drugs but by bringing beauty and comfort into the lives of patients. My new goal as an aspiring doctor is to bring comfort in the lives of my patients.