The term “palliative care” was coined in the 1970s to describe the proactive, intelligent, rigorous work that goes into symptom control and the establishment of mutually understood “goals of care” between doctor and patient. Above all, it is nimble and dynamic work, neither a passive defeatism nor a Panglossian attempt to persuade patients that they must find good cheer even in the face of the worst. It has historical origins that stretch back at least to Sir William Osler’s injunction that doctors “do what is best for the relief of [patient] sufferings,” or to the Elizabethan Robert Burton’s insight that isolation lay at the root of much disease and that doctors who failed to address this were hardly better than quacks. Today, experts in palliative medicine work with patients not just at the end of life, but also for patients with decades of life left, but whose chronic disease — be it multiple sclerosis, Parkinson’s, renal failure or sickle cell disease — throws up new obstacles, new potential forms of suffering, that shape-shift over time.
Doctors in coronavirus hot spots have witnessed more bewilderment and fear in less than two months than we would typically encounter in years of practice. Especially when hospitals have barred almost all visitors to prevent further infections, patients are rightly terrified of the shut door or the drawn curtain — of the idea that they will languish unseen and unheard by their doctors and the world at large. They understandably fear that they might die both in solitary confinement and in physical agony.
One of doctors’ many urgent jobs — even as many of us relearn the intricacies of ventilators, or the proper care of tracheostomies, or the calculations needed to nourish and hydrate critically debilitated bodies — is to assuage our patients’ fears and physical symptoms, honestly and thoroughly.
I want each of my patients to feel — and more importantly, to be — seen, recognized and attended to. The door may be shut, and the careful economy of personal protective equipment may mean fewer physical trips into patient rooms, but clinicians spend collective hours on the phone and on video chat with our patients, all the while watching the exquisite detail of cardiac and respiratory monitors that feed us quantitative information. We spend hours talking with their loved ones, relaying vital information and coming up with creative ways for families and patients to share each other’s presence, even when speech becomes impossible.
Perhaps even more importantly, we gather qualitative information about our patients, too: the philosophy of palliative care has taught us how crucial it is to align our care with patients’ values and priorities, synthesizing this with our prognostic judgment to give them candid and heartfelt clinical recommendations that never assume one size fits all — and then respecting whatever the patient says next, whether that be an endorsement or rejection of our recommendation about how to proceed. Patients may bring a lifetime’s worth of philosophic or religious reflection, or memories of a loved one’s ICU stay, or their worst fears reflected in the day’s headline news. For our part, doctors are trying to assimilate research data that rarely matches the exact person in front of us: for an elderly patient in respiratory failure who has hypertension, diabetes and cancer, for example, there are studies that offer prognostic or therapeutic insights into several of these demographics but rarely all of them at once. This dance of listening and deduction is, of course, part of bedside manner, covid-19 or not — but the paradoxical need for both swiftness and depth is making unparalleled demands on doctors to communicate wisely, long and often.
Doctors from all specialties are also becoming more attentive to and expert at managing symptoms such as shortness of breath, as well as the delirium and agitation that can accompany significant illness. A 2010 study in the New England Journal of Medicine found as a secondary outcome that patients with lung cancer who received earlier palliative care actually lived slightly longer than their counterparts — perhaps suggesting that attentiveness itself could have multiple downstream effects, from catching clinically significant details to doctors’ simple recognition of a patient’s idiosyncratic strengths.
In my hospital, our team of internists and palliative care specialists came together quickly to develop an inpatient ward tailored specifically to covid-19 patients with special end-of-life care needs, some enrolled in inpatient hospice. Hospice is a subset of palliative care that focuses even more intensively on symptom management and the psychological toll of death and dying. It is often associated with home care and the desire to be free of the hospital and its institutional trappings, but sometimes when patients’ health is too fragile, providing a hospice model inside the physical hospital is the best way to provide maximally attentive, patient-centered care.
Dedicated palliative care — and, in some cases, hospice — should be available to all patients regardless of covid-19 status, but this isn’t the case. Many facilities that provide hospice care have limited capability to take covid-19 patients, partly out of concern for the safety of covid-negative patients already vulnerable at the end of life. Inside many hospitals, resources remain so scarce that it feels like an impossible luxury to dedicate time, space and staffing to create wards for this purpose.
And yet this is no luxury: bearing witness and easing suffering has always been the heart of medicine, without which our endless calculations and research become simply the clever arraying of numbers, the deft processing of flesh. There is so much more to be done — so much more of our patients’ lives, symptoms and experiences to be attended to and apprehended.