key: cord-306421-r8wzvpn5
authors: Sizoo, Eefje M.; Monnier, Annelie A.; Bloemen, Maryam; Hertogh, Cees M.P.M.; Smalbrugge, Martin
title: Dilemmas with restrictive visiting policies in Dutch nursing homes during the COVID-19 pandemic: a qualitative analysis of an open-ended questionnaire with elderly care physicians
date: 2020-10-23
journal: J Am Med Dir Assoc
DOI: 10.1016/j.jamda.2020.10.024
sha: 
doc_id: 306421
cord_uid: r8wzvpn5

Objectives To mitigate the spread of COVID-19, a nationwide restriction for all visitors of residents of long-term care facilities including nursing homes (NHs) was established in the Netherlands. The aim of this study was an exploration of dilemmas experienced by Elderly Care Physicians (ECPs) as a result of the COVID-19 driven restrictive visiting policy. Setting and Participants ECPs working in Dutch NHs. Methods A qualitative exploratory study was performed using an open-ended questionnaire. A thematic analysis was applied. Data was collected between April 17 and May 10, 2020. Results Seventy-six ECPs answered the questionnaire describing a total of 114 cases in which they experienced a dilemma. Thematic analysis revealed four major themes: (1) The need for balancing safety for all through infection prevention measures versus quality of life of the individual residents and their loved ones; (2) The challenge of assessing the dying phase and how the allowed exception to the strict visitor restriction in the dying phase could be implemented; (3) The profound emotional impact on ECPs; (4) Many alternatives for visits highlight the wish to compensate for the absence of face to face contact opportunities. However, given the diversity of NH residents, alternatives were often only suitable for some of them. Conclusions and Implications ECPs reported that the restrictive visitor policy deeply impacts NHs residents, their loved ones and care professionals. The dilemmas encountered as a result of the policy highlight the wish by ECPs to offer solutions tailored to the individual residents. We identified an overview of aspects to consider when drafting future visiting policies for NHs during the COVID-19 pandemic.

In the Netherlands, the first COVID-19 confirmed case in a nursing home (NH) was reported 24 on March 12, 2020, 1 and by the first week of April, about 40% of Dutch NHs reported COVID-25 19 infections (Figure 1 ). 2 About 115000 people reside in one of the estimated 1000 NHs or 26 care homes across the Netherlands, 3 for whom medical care is provided by physicians with 27 an elderly care medicine specialty (i.e., elderly care physicians). 4 To mitigate the spread of 28 COVID-19, strict social distancing policies were implemented by the Dutch government as of 29

March 12, 2020. By March 19, a nationwide restriction for all visitors of residents of long 30 term care facilities (LTCFs) including NHs was established ( Figure 1 ). 5 This decision was made 31 in view of a lack of alternatives as the Netherlands was facing shortages of personal 32 protection equipment (PPE) and a lack of diagnostic capacities. The only exception of this 33 restrictive policy included residents in the dying phase to allow a farewell moment for family 34 members (i.e., maximum two visitors per 24 hours). 6 

It is inevitable this policy has consequences for the residents, their families and their formal 36 caregivers. Involvement of the resident's family through visits to the NH has previously been 37 described to be beneficial for the quality of life of residents. 7, 8 Indeed, family has been 38 reported to promote social engagement and to strengthen identity and dignity of residents. 9 39

Family visits to the NH allow for the monitoring of the provided formal care as well as for 40 additional care tasks for the institutionalized older adults. 7 

While the rationale for the restrictive visiting policy imposed to the NHs in the Netherlands 42 the data. 15 The analysis included the following steps: (1) familiarizing with the data, (2) 68 inductive thematic coding, (3) searching for themes, (4) reviewing of themes and (5) 69 finalization of themes. 15 An iterative approach (i.e., the process of going back and forth 70 between the data, the codes and themes) was followed across the different steps to ensure 71 a systematic analysis. 72

The coding of the first 14 cases was performed independently by two researchers trained in 73 qualitative research methods (ES and AM). The results of the two independent codings were 74 then merged into a single codebook. The codebook was used to code the remaining 75 questionnaire data. The cases collected within the first two weeks were coded by one of the 76 two researchers (ES and AM). Changes to the codebook (e.g., renaming of codes and 77 addition of codes) were made in consensus between the two researchers during research 78 meetings (ES and AM). A third researcher (MB) validated the coding by checking for 79 inconsistencies to make sure no relevant information was missed and coded the last 20 80 cases. Doubts were discussed with two other researchers (ES and AM). Regular meetings 81 between the researchers involved with the coding allowed for frequent reflections on the 82 data analysis including the collation of codes into themes and the evolution of the identified 83 themes. The questionnaire data were analyzed using Microsoft Word and Microsoft Excel. 84

All participants were informed about the aim of the study and the purpose of data 85 collection. Formal ethical approval from a medical ethical committee was not required for 86 this research in the Netherlands since it did not subject participants to any medical 87 treatment or impose any specific rules of conduct on participants. 88

The questionnaire was sent to 103 ECPs-in-training and 92 ECPs and anonymously returned 89 by 76 physicians (ECPs or ECPs-in-training). These 76 physicians, further referred to as 'ECPs', 90 described a total of 114 cases in which they experienced a dilemmas. 91

Thematic analysis of open-ended questions revealed four major themes related to the 92 restrictive visiting policy. Quotes illustrating the four themes are shown in Table 1 . 93

Furthermore, we identified dilemmas related to other COVID-19 measures in nursing homes 94 (Appendix 2). 95

The core dilemma experienced was that on the one hand, ECPs wanted to protect residents 96 against COVID-19 infections -implying adherence to the strict visitor restrictions -but on 97 the other hand, as a consequence quality of life of most residents seriously decreased (quote 98 1 and 2). 99

ECPs encountered serious suffering as a result of COVID-19. Hence, they wanted to 100 minimalize the risk of contamination (quote 3). According to ECPs, for some residents, the 101 risk of contamination was acceptable but it was not just about the individual resident (quote 102 4). ECPs emphasized infection prevention concerned safety of all residents (quote 5) and 103 health care professionals (quote 6). 104

The visitor restriction policy contributed to limiting the further spread of COVID-19. Most 105

ECPs encountered understanding of the dilemmas they were facing among family members 106 (quote 7 and 8), although not in all cases (quote 9). 107 J o u r n a l P r e -p r o o f

ECPs used the words 'loved ones', 'partner', 'family members' and 'next-of-kin' instead of 108 'visitors'. ECPs considered the presence of these 'visitors' as essential to quality of life. As the 109 majority of residents of NHs has limited life-expectancy, ECPs estimated quality of life was 110 often considered more important than life duration (quote 10 -12). Furthermore, according 111

to ECPs, next of kin could have provided company and support in uncertain times (quote 13). 112

Moreover, ECPs described cases where they missed additional care otherwise provided by 113 next-of-kin (quote 14) . 114

ECPs described cases where the visitor restriction had profound impact on residents. ECPs 115 observed loneliness, depressive symptoms (quote 15), decreased intake (quote 16), increase 116 in somatic symptoms (i.e. pain) (quote 17), physical deterioration and in psychogeriatric 117 residents rapid cognitive decline (quote 18, 19) and changes in neuropsychiatric symptoms 118 including agitation and aggression (quote 20). The latter was even reported to result in 119 increased psychotropic drug prescriptions for some of the residents. On the other hand, 120

ECPs observed visitor restrictions brought peace for some of the psychogeriatric residents 121 (quote 21). In addition, the restrictions impacted next-of-kin and nursing staff (Appendix 3). 122

ECPs noted that although protection against contamination was irrelevant for a resident in 123 the dying phase, protection of other residents in the institution, health care providers, next-124 of-kin and society remained notwithstanding important (quote 22). ECPs described the 125 presence of visitors in the dying phase implies being surrounded with loved ones and being 126 J o u r n a l P r e -p r o o f able to say farewell (quote 23 and 24). We distinguished two types of issues raised by ECPs: 127 assessing the dying phase and implementing of the exception. 128

ECPs struggle with the timing to diagnose 'dying'. The beginning of the dying phase is not 129 always clear (quote 25). ECPs describe a grey area classified as 'preterminal phase': life 130 expectancy is short, but the resident is not yet in the dying phase (quote 26). In these 131 scenario's, ECPs observed residents whose last days, weeks or months were lonely (quote 132 27) and residents with a rapid course of the dying phase, thereby not being able to say 133 farewell to their loved ones (quote 25). ECPs described that next-of-kin were missing the 134 process of decline and feared this might impact their mourning process (quote 28). ECPs 135 remarked that concluding too early that the resident was in a dying phase implies more 136 visitors (i.e., higher risk of infection) and may set a precedent for others (quote 29). 137 Furthermore, in practice several requirements for visits were pointed out by ECPs. First, ECPs 142 were aware that PPE was scarce, increasing the urgency to limit the exceptions (quote 32). The exception allowing for visitors in the dying phase caused struggles with the assessment 202 of dying phase. Dutch guidelines for palliative care define dying phase as last days of life. 23 It 203 is well-known that diagnosing dying is a highly complex process. 24 The examples of alternatives for visits (technical and at distance) underscore the urgency to 227 compensate for the absence of visits and in the Dutch media was parallel reported on 228 various creative solutions to allow contact at distance (e.g., using a cherry picker, 229 'coronatainers'). 27, 28 However, alternative solutions are only suitable for some residents as 230 J o u r n a l P r e -p r o o f many have cognitive impairments, visual or hearing disabilities and/or speech disorders. In 231 addition, the effect of technical solutions in decreasing social isolation in NH is limited. 29 30 In 232 the dying phase these alternatives could not replace the presence of close loved ones who 233 wanted to say goodbye. Consequently, ECPs deliberately weighed, whether or not a tailored 234 exception could be made in individual cases. ECPs find it reassuring to take these decisions 235 with a group of colleagues. 236

After a significant peak in the number of deaths in early April, the number of COVID-19 cases 237 and deaths in NHs has been declining in the Netherlands. 31 On May 11th, a pilot in 26 NHs 238 allowed for one fixed visitor, which as of May 26 applied to all COVID-free NHs; restrictions 239 were further relaxed June 15 to allow for more than one fixed visitor and more frequent 240 visits under certain conditions (Figure 1 ). 12 In our study ECPs struggled with on the one hand 241 the pressure to adhere to the national visiting policy and on the other hand their wish for 242 tailoring for the individual. At first, they experienced largely understanding for the situation. 243

However, since May families have increasingly been expressing resistance against the visitor 244 policies. 13, 14 Although there is no 'one size fits all' solution for the complex dilemmas faced 245 here, our analysis provides several insights worth considering in assessing and reviewing 246 current and future visiting policies. We observed that the nationwide 'top-down' restrictive 247 visitor policy resulted in resistance and a need for more regional and local tailored visiting 248 policies. Important aspects emerging from our study to be considered by policy makers 249 when issuing visiting policies are the regional and local COVID-19 prevalence, the availability 250 of sufficient PPE, the possibility to streamline visits (e.g., separate visiting areas, schedules 251 for visitors), and the possibility to isolate residents. Nevertheless, even with visiting policies 252 tailored to the regional and to the local NH organization context, dilemmas may still occur on 253 J o u r n a l P r e -p r o o f an individual level. Health care professionals may still have to weigh whether or not the local 254 visiting policy is proportional to the specific circumstances of the resident and his or her 255 visitors. Relevant aspects emerging from our analysis to take into account when decisions 256 have to made for those dilemmas are summarized in Table 2 . We believe explicitly 257 considering these aspects by health care professionals should contribute to cautious 

• "Covid negative client, displays no symptoms, has to stay in his room because the care unit is closed due to a covid positive client, family member wants to put on PPE and pick up client in PPE, to take them outside so they are no longer in a sad mood and will eat and drink again" • "Yes, that too, it would be more pleasant to be able to go outside with a few people to keep the situation on the care unit bearable. In many cases, this prevents agitation and behavioral problems among clients with dementia."

Isolation and psychotropic drugs • "Sedating patients who are infected and don't remain in their rooms. Isolating and sedating 'walkers', with as a result:

an unpleasant end of life."

• "Severe agitation with a PG-resident who can be calmed by family and requires more sedating medication out of necessity."

• "Psychiatric drugs became necessary to improve the quality of life, with drowsiness and decreased mobility as a result." • "Sir now receives an increase of clozapine-medication, while it is unclear whether a non-medicated visit of family could be more effective."

• The residents' world was already small, now it is even more limited because they can no longer receive family and friends, and are also locked inside the nursing home.

The fact that residents cannot go outside themselves is very restrictive and increases psychological complaints.

Freedom restriction and tailoring to residents

• "It would be nice if national policy would be that those to whom it relates, and to whom sitting in the courtyard is not enough, could go for a daily walk around the house or (duo)cycling accompanied by a member of staff." • "I find it difficult that they are not allowed to go outside under the condition that they have no social contact, don't go to the supermarket etc. A stroll around the block of a client with dementia accompanied by a member of staff, without any other form of social contact, should be possible."

• "The client with the spinal cord injury has complete autonomy over his life, despite the dependence on care. He would be capable of adhering to social rules. However, he is in a total lockdown and I am in an intelligent lockdown". • "It feels unethical to restrict someone in their freedom, if your expectation is that he would act responsibly."

• "In my opinion, riding around on empty parking lots or visiting quiet parks barely increases the risk of infection, but increases the feeling of freedom."

• "Taking away the option of going out for fresh air from a cognitively competent person on an uninfected care unit, even J o u r n a l P r e -p r o o f when they adhere well to regulations, is something I consider a strong intervention of their right to lead their own life.

The risk of spreading corona verses the restriction of freedom is, in my opinion, disproportional. "

• "What is difficult is that most of the contact is through telephone, there is no face-to-face contact. It makes communicating different, and more difficult." • "Immediate incident with a resident, rectal blood loss. Considering the stage of dementia, we will wait and see, and temporarily stop using anticoagulants Scared wife on the phone, fears cancer, cries. Reassured with difficulty. A personal conversation would have been better."

• "There is little deployment of volunteers, spiritual care or psychologists possible, because they are also required to work from a distance as much as possible. This has caused the deployment of help with her mood to be slowed down."

Alternatives for therapies and care

• "She currently does receive a psychologist and spiritual caretaker in her room because of the urgency, but visitors are still not allowed. An attempt will be made to improve that through videocalling or standing on the blacony with a baby monitor."

J o u r n a l P r e -p r o o f

Impact on next-of-kin

• "Family also found it very hard to hear her speech was declining as a result of ALS and they could not come to see her, to talk to her about it."

• "Family is losing autonomy: I can see this is painful for them." • "The powerlessness and frustration of partner and the major worries this caused." Impact on nursing staff

• "Informing families more often and better, many extra reports by nursing staff, use of video calls etcetera. Nursing staff experience this impotence too and are not always able to provide extra care."

• "The team is more at ease as there is no traffic of various people and professionals across the care units •

. Therefore, they have more time for residents. "

• "This took a lot of effort by phone from my side to maintain a good doctor-patient relationship. " • "Guidance of care-teams and explaining decisions take a lot of time. " 

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What affected you most in this situation? Could you describe what impact it had on you? 3. Did considerations relating to the resident play a role? If yes, which ones? 4. Did considerations relating to the resident's family play a role? If yes, which ones? 5. Did considerations relating to the nursing staff play a role? If yes, which ones? 6. Did considerations relating to the care unit play a role? If yes, which ones? 7. Did considerations relating to the organization play a role? If yes, which ones? 8. Did any other considerations play a role? 9. What was decided upon regarding the dilemma and who was involved in the decision? 10. Are there any other

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

Measures also protect the professionals in particular: they are very vulnerable to be infected or to spread the coronavirus

Patient was terminal and visitors were allowed, a maximum of 2 people per day. Except, these two would walk in and out throughout the day (…) This made me realise that the policy of 'two 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

for example: • Loneliness • Depressive symptoms, depression • Decreased intake • Neuropsychiatric symptoms (increased or decreased) • Physical complaints (for example pain) proportional? Visitor COVID-19 confirmed? COVID-19 related symptoms? Connotation of visiting the resident for specific visitor: • Being able to say goodbye to loved one • Being involved in resident's disease process/ process of decline • Being involved in resident's care process • Being involved in resident

First confirmed COVID-19 case in national nursing home registry

Social distancing policies implemented by the Dutch government

2020: Nationwide restriction for all visitors of residents of LTCFs including NHs

Start of data collection/questionnaire sent to ECPs

End of data collection/questionnaire closed

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Eased visiting policies (i.e., allowing for one fixed visitor) in all NHs free from

First monitoring results of the pilot published by the Collaboration of Academic University Networks for Older Adult Care in the Netherlands

Stepwise lifting of restrictive visiting policy (i.e., allowing for more than one fixed visitor and more frequent visits) for all NHs under certain conditions including COVID epidemiology and organizational factors

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