Jack was the very first palliative care patient I met. Visiting him in his home, I feared the worst: emaciation, pain, a fluxing state of consciousness, and the otherwise bed-bound shadow of a former life. Instead, the first sight I was greeted with was a beaming smile beneath a bushy moustache. But for his IV lines and analgesia pump, Jack might have passed for a completely well middle-aged man, certainly not a patient that was dying.
As we spoke, I was disarmed by his positivity and the simple normalcy of our interaction. We could have been in a coffee shop somewhere, anywhere, discussing any topic other than death. He lifted his shirt to show me the masses protruding from his abdomen: His own personal harbingers of death, and each, a marker of the trials he’s had to endure. Yet, he was completely pain free due to a steady infusion of opiates. His activities were limited, he was easily fatigable, and he was mostly bedridden, but his spirits were high, he spoke clearly, and he was completely lucid. His wit seemed as sharp as ever as I watched him easily recall the jokes, the smiles, and the laughter of a more carefree time.
He told me that nurses and doctors visited him regularly to address his medical needs while his wife and the rest of his family kept him company within the comforts of their own home. There is no countdown or the specter of impending death. Instead, the goal of palliation, for Jack and for others like him, is to maximize quality of life for the rest of life, however long that might be. For some, that could be days or weeks whereas for others, months or even years. Jack was optimistic that he would be in the latter group.
To many, the idea of palliative care is one of melancholy and pain, an unenviable path to an imminent and inevitable death. The reality however, is that palliative care might be one of the most compassionate fields in medicine, pure in its intentions to relieve suffering and to promote dignity in its patients.
Today, there remains a well intentioned, albeit sometimes misguided priority for preserving life at nearly any cost. Health care professionals are asked to do everything to “save” patients: to keep them tethered to life by artificial strings, maneuvering tubes down orifices, pushing IVs through collapsing vessels, subjecting bodies to harsh treatments such that patients remain alive, but hardly living, and with only shreds of their former dignity. With palliative care, patients are given some measure of autonomy and control over the most inevitable element of life: death itself. Patients are allowed to dictate the terms of their final exit, sparing their dignity, their values and the faculties they hold most dear in the process.
While Jack’s story is special, it is also one of nearly countless others. As in all of medicine, some patients in palliative care do better, while others do worse. However, Jack stands as an example of what end-of-life care can offer others in a rapidly aging patient population: a dignified means of closing a dignified life.
Justin Wang is a medical student.
