key: cord-0857658-29mdku22
authors: Bronsther, Rachel
title: Visitor Restrictions During COVID-19 Pandemic May Impact Surrogate Medical Decision-Making
date: 2020-06-30
journal: J Patient Exp
DOI: 10.1177/2374373520938489
sha: 835f67e66973d4e1d8f9234dc4c43bc74e592365
doc_id: 857658
cord_uid: 29mdku22

nan

I was recently rounding as a hospitalist on a general medical floor. A patient who had been in the hospital for nearly three weeks showed up on my list. His chart was dense; it was surprising he had survived thus far, in and out of intensive care to intermediate units with hemorrhagic shock, respiratory issues, and sepsis. At baseline, he was on chronic steroids for an autoimmune disease and was tracheostomy and dialysis dependent. He had also had a Roux-en-Y gastric bypass years before.

During the course of his hospitalization, he was found to have severe dysphasia, and despite efforts of our speech and swallow therapists, he was unable to regain any safe swallow function and was made strict nothing by mouth status. While he was mostly lucid, but he had pulled out at least 3 nasogastric tubes during periods of confusion and frustration and refused to have another placed. Surgery was consulted for a possible feeding tube. Given his poor overall functional status and his history of having gastric bypass, the surgery team felt he was not an appropriate candidate for this surgery and raised the question of initiating total parental nutrition (TPN).

This patient was in his late 60s but he appeared to be in his 90s and on death's door. His body mass index could not have been more than 13 or 14 and he was covered in ecchymoses and had more skin tears than I could count. He was extremely weak; even to hold his tracheostomy tube closed so that he could speak seemed to take great effort. When I examined him I did so with great caution because it seemed like I could break his bones if I pushed my stethoscope in too deeply to listen to his rhonchus lungs. Also, he was a full code.

Palliative care was already on board when the patient was transferred to my floor. There had been questions about the patient's capacity to make decisions at times, but he mostly seemed extremely anxious but cognitively intact. However, when he received small doses of lorazepam to treat his anxiety, he would become nearly unresponsive for hours. Family was included in all decision-making, but the patient seemed to just agree with whatever his daughter, who had power of attorney, said regardless of his cognitive status at the time.

A complicating factor was that visitor restrictions had been put in place due to COVID-19 while the patient had been admitted. His family was able to visit early in his hospital stay, but once restrictions were placed, they were unable to visit him. This was not a COVID-positive patient, but COVID was certainly affecting his care. Family would primarily talk on the phone with the patient, but again, speaking seemed to take a great deal of effort for him and so the conversations were short. In addition, the palliative care team had arranged multiple video family meeting calls using FaceTime. Despite being updated by providers regularly and the direct communication she had with her father, the daughter did not seem to comprehend, or perhaps did not want to, her father's poor functional status and prognosis.

A fourth FaceTime call was arranged with myself, the patient, palliative care, and his family on a late afternoon. He tended to be calmer and more alert in the afternoons and I had changed his as-needed medication for anxiety to lowdose quetiapine, which he tolerated much better than lorazepam which I believed was causing symptoms of hypoactive delirium in this patient (1) . The patient was mentally clear during this time, and given my psychiatric background, I made sure to assess his capacity during the conversation as well. We discussed his full code status and the unlikelihood he would survive resuscitation. We also discussed the risks of TPN and that it also meant the patient would probably never be able to enjoy his favorite salty snack foods again. Many tears were shed, but ultimately, the patient voiced his desire to stop dialysis, to go on hospice, and to eat. The daughter was able to agree with this because her father had actually said the words out loud. Also, she witnessed my capacity evaluation and felt he finally understood the implications.

Efforts were made to FaceTime between the patient and family with staff's personal phones before this last call, but I believe if the daughter could have seen her father's frail and very still body in the bed, the decision to move toward hospice could have been made sooner. Anxiety is notorious for affecting one's ability to make decisions, both big and small. And, perhaps, the patient's anxiety would have been lessened if he could have sat with his family, thereby allowing him to be better able to participate in his own decisionmaking sooner.

Per hospital policy, hospice patients were an exception to the no-visitor policy and were allowed one visitor at a time. All visitors were screened for viral symptoms, had their temperature checked, and were required to wear a mask at all times while in the hospital. Besides hospice being what I believed to be the best choice for this patient, it also meant that he would not have to die alone and his family would have a chance to say good bye.

I saw him one last morning with a giant bag of cheese puffs (apparently his favorite) and a smile on his face. He looked healthier than he had the day before. I laughed and told him I had no idea junk food could be so therapeutic. He was comfortable, grateful to be able to enjoy food, and felt relief having seen his daughter in person for the first time in weeks. He was transferred to inpatient hospice later that day.

In my patient's case, he was ultimately able to be a part of his final goals-of-care discussion. However, patients are at increased risk of delirium if they do not receive visitors, which can ultimately affect their capacity to make decisions (2) . For surrogate decision makers, restricted visitation also presents a big challenge. There have been multiple cases since these restrictions were put into effect at our institution where families and treatment teams disagree on how aggressive care should be moving forward and the patients are too sick to participate in these discussions. While of course during normal times there are instances where families and providers disagree, but I believe not having the ability to be physically at a loved one's bedside, coupled with societal fear and perceived helpless during this pandemic, may be affecting families' unwillingness to accept poor prognoses. It is hard to accept an undesirable situation when one cannot really see it. Platforms such as FaceTime and Skype provide means of communication, but they are an incomplete substitute for being present in many situations. The sights, sounds, and even smells of a hospital room cannot be fully experienced via a screen.

As such, not having the ability to be in the presence of a sick loved one has the potential to prolong suffering and futile care, as it I believe it did for a period in my patient's case. Luckily, my patient was able to make the right decision for himself in that it was inline with his previously stated goals and his current wishes and that family was in agreement, but he may not have come to this conclusion without the help of a persistent team that insisted on multiple family meetings to make sure all necessary information was communicated to involved parties.

As medical providers, it is our responsibility to keep lines of communication as open as possible between the treatment team and the patient and their families during this strange time. In many cases, this is going to take both extra effort and novel uses of technology. Hospital visitor restrictions are an obvious necessary precaution to slow the spread of COVID-19, but these restrictions come at a price. The implications for shared medical decision-making is but one of the many costs.

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ruling out delirium: therapeutic principles of withdrawing and changing medications

Levy MM Visiting hours policies in New England intensive care units: strategies for improvement

Author Biography

She practices in Delaware as a Consult-Liaison Psychiatrist and as a Hospitalist in the Christiana Care Hospital System. She is also very involved in the teaching of residents and serves as the associate program director for the Psychiatry Residency Program at her institution

Rachel Bronsther, MD https://orcid.org/0000-0003-4217-1636