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What’s Important: The Institutionalization of Loneliness

2020; Wolters Kluwer; Volume: 102; Issue: 18 Linguagem: Inglês

10.2106/jbjs.20.01451

1535-1386

Frank Cutitta,

Mental Health and Patient Involvement

Before my wife could park the car after dropping me off at the emergency department at Newton-Wellesley Hospital in suburban Boston, I had texted her to say that they were admitting me, intubating me, and medevac'ing me to the Mass General COVID unit. I had gone through denial that my condition was this serious, having argued with my wife that my fever and exhaustion were a result of severe allergies. This was the first hour of what would result in 100 days of hospitalization for COVID-19, including 45 days in an induced coma and another 50 days of medical care and rehabilitation. Thanks to the "milk of amnesia" effects of propofol, I have no recollection of my intubation period outside of the horrifying anecdotes that my family has told me, which thankfully involved the many angels who cared for me in the high-risk COVID unit. All I recall is that one of the lead COVID specialists said, "We're not letting him go. Let's throw the kitchen sink at this." As background, I've spent my recent life as a health-care technology journalist and researcher for the trade organization HIMSS (Healthcare Information and Management Systems Society) and as a professor at Northeastern University and University of New England. Much of my work as a health-care content creator has focused on the latest trends in patient engagement and population health. I have also had the honor of being a nonmedical member of the JBJS Board of Trustees, providing guidance on the latest media trends. Little did I know that, in late March, my life would change dramatically such that I would get to view COVID-19 through the patient's lens as opposed to my previous vicarious perspective. In May, I was lucid enough to understand the necrotizing effects that the virus had on my lungs and the loss of motion in my legs. I was blessed in that the virus spared my brain and upper limbs. Most important was that I could still use a computer keyboard. My options were to wallow in my disabilities or to embrace the challenges that I had to overcome and to document, first-hand, the COVID patient experience at 2 prestigious hospitals: Massachusetts General Hospital and Spaulding Rehabilitation Hospital. My prior experience with hospitalization had been limited to 2 rotator cuff procedures and treatment for an Achilles rupture in my younger years. As the readers of this journal know, the orthopaedic patient experience can vary wildly from that of patients with highly contagious epidemic diseases. Ironically, my experience in a rehabilitation hospital brought me to the nexus of a variety of specialties. From my first week in a quarantined clinical environment, I learned how challenging this recovery would be from a medical perspective, but even more so at an emotional level. Because of the highly contagious nature of COVID, health-care providers assigned to COVID units have been forced to seriously limit clinical interactions with their patients in the interest of safety. This has resulted in what I've referred to as the "institutionalization of loneliness" from the COVID patient's perspective. I'd like to reinforce that this is not the fault of any particular person in the provider organization. The short time that we have battled this epidemic has limited the best practices employed, so most risk-averse providers have rightfully erred on the side of caution. Unfortunately, unlike those undergoing traditional elective surgery, COVID patients are suddenly thrown into a world of extreme isolation where one can have little to no direct human contact for 22 hours a day. Granted, platforms such as FaceTime and Zoom create the illusion of human interaction, but they by no means replicate direct human contact. Research shows that loneliness can be as deadly as diabetes and heart disease, especially in elderly populations1. It further reinforces that loneliness can slow the recovery process. As a very active and emotionally secure individual prior to contracting the virus, I never dreamt that I would be drawn into the dark depths of loneliness as a result of the extreme isolation that I experienced every day. Adding to my distress was the fact that, even under an optimum recovery time frame, I would be trapped in this situation for a very long time. Hopelessness and loneliness became a part of my day-to-day thinking, with little tangible progress. I learned that the reason my nurses seemed to be so task-oriented was that they were under strict orders to spend no more than 10 minutes with COVID patients so as to avoid contamination. Most doctors were under the same time restrictions. Patient engagement was limited to explaining the medications being pumped into my body and the results of my vitals as well as asking whether I was experiencing any pain. Human interaction beyond these "housekeeping" aspects was rare. Some caregivers became visibly uncomfortable if I tried to turn the bedside conversation into something more emotionally fulfilling. Weekends were especially empty given that many of my regular care team were not working and their itinerant replacements were not in a position to establish deeper relationships. In fairness, some clinicians ventured into short conversations about my professional life. Not surprisingly, some became more interested when they learned that I was documenting my patient experiences for a book and journal articles. But on the whole, the system limited the time that they could spend with me for meaningful conversation. After 70 days, the isolation became so overwhelming that I finally reached out for professional help to cope with the problem. I was fortunate to be assigned a social worker who led me out of the darkness by simply sitting at my bedside and talking face-to-face about topics ranging from sports to politics. This could have arguably been accomplished by Zoom or FaceTime, but the experience of looking at, and interacting with, a human in my room was incredibly powerful. Unfortunately, as related to me by one of my physicians, a disproportionate number of COVID patients come from large immigrant families who live in tight quarters. These patients face 2 challenges related to isolation: (1) the shortage of translators in acute-care settings and (2) the fact that they may be "digitally disadvantaged" and unable to leverage communication platforms to communicate with their families. My experience taught me that there is a blind spot in the continuum of care involving human interaction with quarantined or isolated patients. Granted, the economics of having a counselor for every patient are prohibitive, but the qualitative aspects of these interactions relate directly to reducing loneliness and increasing the speed of recovery. A system that discourages meaningful communications can expect longer hospital stays and subsequent mental health issues similar to posttraumatic stress syndrome. In my early attempts to engage members of my care team from my bed, I approached my situation as a "pity party" of sorts. It was all about me. As I got deeper into my work of researching COVID recovery, and as I developed a sense of trust with my own caregivers, I was repeatedly reminded how lonely they were in the COVID clinics. Many had been reassigned from oncology units where they had developed deep and meaningful relationships with patients from the time of diagnosis to the day of remission or, in some cases, death. They took great pride in their finely honed empathic communication skills. Being transferred to the COVID unit completely limited the intimate conversations that they had with patients and families and forced them into truncated, more transactional conversations that magnified the loneliness that they too were experiencing as a result of COVID restrictions. In addition, many of my nurses and doctors were emotional about the number of friends that they had lost contact with as a result of the fear of getting COVID. Others talked about the loneliness that they experienced in deciding between being quarantined from their family for a month versus leaving their job and not being able to make their mortgage payment. Finally, along with loneliness came the anonymity that COVID has added to the health-care setting. This is embodied by every caregiver being required to wear a mask. In my 100 days of hospitalization, with upward of 100 clinicians looking over me, I saw only 4 faces. Two of these were nurses who broke the rules and wanted me to be able to recognize them if I ever saw them in public. Most of my engagements involved asking my caregivers what their names were and whether we had ever met, only to find out that I simply did not recognize them because they had pulled their hair back or changed their PPE (personal protective equipment) from the previous day. Imagine any other industry where you could have 100 days of extremely personal procedures and yet see only the eyes of the provider of the service. Experience tells me that anonymity limits the intimacy of patient engagement and can fuel increased loneliness. With respect to the rehabilitation experience itself, one of the more striking observations that I made during my month at Spaulding was how "old school" many of the therapy sessions were. As a health-care technology writer based in Boston, I had in mind that my treatment would be driven largely by 21st-century musculoskeletal devices to enhance the traditional modalities. These traditional methods, when coupled with the care of physical therapists who understand the fine line between empathy and clinical tough love, taught me very quickly that low-tech therapy was just as effective in getting me back on my feet and eventually discharged ahead of schedule. I must also add that because of the nature of their role in the rehabilitation process, the physical and occupational therapists did offer a temporary, albeit grueling, respite from the loneliness and isolation during the 1 hour I spent with them outside of my room each every day. I was miraculously released on Independence Day, leaving the sterile cocoon that gave me the ability to walk and breathe. While the homecoming was truly joyous, I've come to realize that the swing from extreme loneliness to constant attention comes with its own new challenges and that a long road is still ahead of me.