Table 1.

Quotations of Elderly Care Physicians Illustrating the Emerging Themes

I. Dilemmas as a result of the general strict visitor restriction

1.“It remains a ‘Devil's bargain’: protecting clients from infection (keeping the outside world out) and having contact with the people you love.” 2.“The dilemma concerns allowing visits for the patient's quality of life versus the risk of loved ones becoming ill and further spread in society.”

Infection prevention 3.“In my nursing home, I observe how much suffering Corona causes and how many people fall victim to it. The risk of spreading should really not be taken.” 4.“… for that person, it does not actually matter whether corona is an added condition (although I understand that it is about the protection of the institution and not of the individual patient).” 5.“Obviously, you want to ensure the safety of the residents in the department.” 6.“Measures also protect the professionals in particular: they are very vulnerable to be infected or to spread the coronavirus.” 7.“Society knows what is going on. You do not need to explain to loved ones they are not allowed to come.” 8.“Remarkable how much understanding we receive from family members when we explain the dilemmas we face.” 9.“Relatives who continue to argue about the framework in which visits are possible.”

Quality of life Importance of visitors 10. “In this phase of life, quality is most important. Living secluded, away from loved ones in quarantine is not appropriate for quality of life.” 11. “For patients on the psychogeriatric care units, maximizing quality of life is the main aim. To this respect, visiting and contact with loved ones is the most important thing.” 12. “She literally said: now that I can no longer see my family, I have nothing left to live for.” 13. “The need to allow her to be supported her in her suffering.” 14. “The partner visits a patient with dementia daily. Partner helps the patient with feeding, among other things.” Impact of visitor restriction 15. “Her fear, sadness and loneliness, very tangible and strongly present, mimicking depression.” 16. “Partner explained he visited his wife with dementia daily, helped her feeding for hours. Since he has not been allowed back, she did not eat and drink enough.” 17. “Several other residents who suffer more psychologically and even experience more physical pain as a result of the social suffering. As a doctor, you try to treat this but the solution is elsewhere.” 18. “Still, there are several poignant cases with severe cognitive decline, partly as a result of the absence of daily contact with family, which is an essential factor.” 19. “The resident is in danger of not recognizing the partner after a long time, in particular when video calls are not understood.” 20. “Increase of behavior problems, in particular agitation and physical contact towards nursing staff after the wife was not allowed to be with her husband in the afternoon. Causes an increase in psychotropic drug use and major pressure on nursing staff.” 21. “No visits also results in peace on the care units. For some of the people it is very hard, but another part is more calm and thrives.”

II. Dilemmas as a result of the exception in the dying phase

22.“The dilemma is allowing visitors from the angle of quality of life for the patient, versus the risk of infection from loved ones and further contamination into society.” 23.“The right to being surrounded by family as you pass away.” 24.“A goodbye in person is something I see as very valuable.”

Assessing the dying phase 25.“Wife was asked to husband short before he passed away, sometimes it is hard to estimate being terminal. Then we are too late. This occurs sometimes, also during normal times, but then the family would already have had the opportunity to say goodbye when the patient became ill.” 26.“Is the daughter allowed to visit her mother despite the mother not being terminal yet, but while she is still communicative.” 27.“His last days/weeks/months are lonely.” 28.“I would not be surprised if this resident passes away during the corona crisis from something other than corona. It is tough for the family that they are not able to follow this process, not until he is on his deathbed. The processes of saying goodbye and acceptance are much harder to start.” 29.“If we allow visitors now, we might have to allow it with others as well.”

Implementation the exception 30.“That I have to decide how many family members can say goodbye or not. Conflict between adhering to policy and rules and the human dimension.” 31.“Mrs with 4 daughters (…) You can't let children decide amongst themselves who is allowed to visit, right?” 32.“Allowing low-threshold visitation (if life expectancy is uncertain) we will have even fewer PPE at our disposal, since family also needs to wear PPE.” 33.“Patient was terminal and visitors were allowed, a maximum of 2 people per day. Except, these 2 would walk in and out throughout the day (…) This made me realize that the policy of ‘2 people a day in the terminal phase’ is not specific enough. Are they allowed to walk in and out? How long are they allowed to stay?” 34.“Nursing was given the job and responsibility to lead the process of visiting which went well, but it was scary for them.” 35.“The care unit was still covid-free at that point. The risk of infection coming in with this family was deemed high, due to contact with the covid-positive wife who had passed away.” 36.“Family was invited to come visit sir (a maximum of 2 people at a time, without symptoms and without a fever). The eldest daughter has coughing complaints, chronically according to her. How do you make a decision in a case like that.”

III. Impact on Elderly Care Physicians

37.“The fact that I had to decide whether a son could see his mother was something I found agonizing, while it wasn't even necessarily my decision in the first place, it was the government's decision.” 38.“Suboptimal care. Normally in these situations, family that could help with care are now shut out. Is this a good decision?” 39.“Seeing agitation increase, and knowing that family could have a positive influence but not being allowed to allow them in and having to explain that to the family. Feels terrible. Painful. Poor quality of care.” 40.“But sometimes it is so unexpected when it comes to COVID, it makes me feel scared that I am withholding a goodbye from family and patient.” 41.“Impotence to find a good solution. It occupies my mind, day and night.” 42.“This is unacceptable, I feel I am falling short, powerless and also angry at this entire situation. Inhumanly sad, it deeply affects me.” 43.“Very poignant, this should not have happened this way.” 44.“So tangible (…) it is such an inhumane happening and I am personally having a really difficult time with this decision.” 45.“It gives you a real feeling of injustice and doubt about whether something weighs up against the risk that comes with allowing visitation.”

IV. Diversity calls for tailored solutions

Diversity 46.“It is a young man with a one-sided paralysis after a CVA, but he is cognitively well. He can make informed considerations and express himself well.” 47.“Relatively young patient, with MS with severe paraparesis (…) She is able to communicate with loved ones via several forms of media.” 48.“She can't express herself well, verbally, which makes communication through the telephone or video calls not possible, which creates more emotions and frustrations.” 49.“Communication with daughter through video calls led to more agitation, paranoia and delirious phenomena.” Tailoring 50.“Really account for the humanity. As per usual, also in this case, we weigh the risks, not only to the patient but also to their loved ones and the nursing staff.” 51.“The government policy is not pleasant. There is too little attention for proportional decision-making and tailoring.” 52.“Individual tailoring is strongly preferred, especially when considering the rights of the hospitalized patient.” Solutions 53.“It also depends on location. Some places have gardens where visitation ‘at the gates’ works really well.” 54.“On the ground floor we were able to make arrangements that the rest of the family could stand at the window to be a part of the moment [ritual when passing away] with the pastor.” 55.“Audiofiles of sir, that could then be played back.” 56.“On scaffolding in front of a window also won't work, Mrs does not understand that and it will only end in drama.” 57.“When you're sick, a videocall is not enough.” 58.“Allowing the husband onto the care unit would most likely have caused such unrest and aggravation with other patients that we decided against it.” 59.“If you make an exception for one person, then why not for the other. Who is suffering the most under this measure.” 60.“Because then more cases would qualify for this exemption which would make it hard to safeguard the boundaries (in consultation with the local crisis team).” 61.“A decision was made with all involved disciplines (nurse, supervising elderly care physician, teamleader, psychologist).” 62.“Eventually the husband decided to take the patient home for an indefinite amount of time. Not ideal because of the severity of care, but when weighing the risks they still made this decision.” 63.“Client with many children discharged themselves for terminal care at home so that everyone could say goodbye at home. Eventually satisfactory for the family, though still hectic in a terminal phase.”