The pandemic and its subsequent social distancing rules have brought into sharp focus a long-standing grievance in quality of healthcare design: the experience of patients dying alone in hospitals. As a recent editorial in the “Journal of Intensive Care Medicine” declares “…of all the harrowing images of the COVID-19 pandemic, perhaps none is more heart-wrenching than that of a patient dying alone, without loved ones at their side, amidst chaos and fear….Age-old cultural and religious traditions surrounding death that comfort the dying and sustain the living, have also fallen victim to the pandemic.”
In their book on “Innovations in Hospice Architecture,” Verderber & Refuerzo have long criticized the hospital experience as a sterile, noisy environment, with visiting restrictions and inadequate symptom control and pain management. This issue is exacerbated due to the additional social distancing rules brought about by the pandemic, banning visitors into hospitals even in the extreme cases of dying. As the “New England Journal of Medicine” points out that such hospital policy has become an ethical and health care dilemma. Yet, as per an editorial in “Intensive Care Medicine,” the authors believe that infection control, public health concerns and family-centered care can coexist and urge reconsideration of adult family members’ presence at the bedside of patients. Given that typical bereavement support, spiritual/religious customs and funeral services are not available during COVID-19, they believe that the psychological benefit of family presence becomes that much more providing positive grief resolution and reduction of post-traumatic stress.
The authors point out that because families beg to see their loved ones before they die, hospital staff have tried to creatively accommodate these requests within their workplace limitations. Examples include nurses holding the bedside phone up to the patient’s ear, or lending their personal smartphones to communicate via Skype, WhatsApp or FaceTime. However, virtual technologies, while being a tolerable substitute during these times have several limitations. Many nurses, owing to concern about HIPAA privacy rules, a heavy workload or poor connectivity are on several occasions unable to offer such basic communication with family. The authors argue that virtual and in-person visits are also a false equivalent because it limits the human connection that provides meaningful elements of end-of-life decision-making and care. Additionally, virtual visits may perpetuate disparities in care for low income and elderly family members who may have limited access to these technologies.
Erin Peavey and Sheila Ruder, researchers and practitioners of healthcare design outline some guidelines to hospital design for the dead and dying. Among their recommendations are creating a degree of privacy so that each patient can say goodbye to loved ones or have religious rites, providing for family visits (establishing protocols for visits so patients and family know what to expect), supporting two-way communication (video communication, or visual contact through a protective barrier, like a window), creating positive distractions (personalized acoustics or comforting nature sounds, access to sunlight, nature or images of nature), establishing a dedicated entry (mobile handwashing stations, donning and doffing zones) and back-of-house access (for dignified and safe extraction of bodies).
While the pandemic has placed spaces for dying in sharp focus, the question of ideal environments for the dying has been long addressed in the areas of nursing care, environment-behavior studies, end of life and hospice settings. Hospice care is a type of health care that focuses on the terminally ill patient’s pain and symptoms and attending to their emotional and spiritual needs at the end of life. Traditional hospice care models provide nursing homes an alternative to curative or restorative care and offers emotional/spiritual support for residents and their families. However, as Schwarz and colleagues observe that much of the nursing home experience is one of rejection, loss and in some extreme accounts, a “double burial” that equates relocation to a nursing home with a person’s final terminus of life.
By contrast, “home-like environments” are preferred in hospice settings as it is less institutionalized. However, as Benson and colleagues caution that the realities of a “home death” experience present challenges for family members, especially those with limited resources and social support. They conclude that “home death” does not automatically equate a “good death,” although it might be easier on both the dying individual and the caregiver to make a plan that carries the concept of “home” to wherever they end up dying.
In describing ideal places for dying among hospice patients, Professor Ruth Tofle, an environment-Behavior researcher describes that the deathbed is where the individual exerts preferences and desires for a wide range of connectedness to their environment. Referring to places for dying as “Gerontopia,” she observes that connectedness could be manifested in many forms such as connections to the outside world (telephone, email, Skype, favorite music, television, radio, video) ; connection to nature (windows and balconies with natural light and a view, plants, protective pets, linens air-dried outside, sunsets, snow and falling rain, garden, decades old freshly picked from family garden); connections to people (visitations from friends, mail delivery, family routines, journal writing, singing & poetry recitals with, watching passing neighbors, watching children building snowmen from window); connections to home (being part of holiday celebrations and traditions, privacy, autonomy to do what one wants); memorabilia giving identity (acknowledgements of a rich life lived—sentimental gifts from loved ones triggering memories, hand-stitched patchwork, quilt of childhood dresses, heirloom linens, photographs of loved ones and places travelled, meaningful things); and spiritual transcendence (rainbows, candlelit meals, religious materials, burning incense).
While such architectural and behavioral factors can certainly improve the quality of end-of-life, the urgency of pandemic has care-givers and doctors appeal for shift in paradigm in how we view hospital care. One proposed model is to move away from a patient-centered model and adopt a community-centered model and continuity of care. Facing the pandemic more strategically at a community level reduces hospitals being overwhelmed and avoiding many of the pitfalls that helps create ethical dilemmas of end-of-life care. These models rightly observe that pandemic solutions are required for the entire population, not only for hospitals, and one needs to look at the whole system of continuity between health and disease, cure and well-being, community and hospitals and life and death.