key: cord-1013638-n3kln33i authors: Brugge, B.P.H ter; van Atteveld, V. A.; Fleuren, N.; Douma, M. H.; van der Ploeg, M. B.; Hoeksma, J. E.; Smalbrugge, M.; Sizoo, E. M. title: Advance care planning in Dutch nursing homes during the first wave of the COVID-19 pandemic date: 2021-11-03 journal: J Am Med Dir Assoc DOI: 10.1016/j.jamda.2021.10.014 sha: d3d3c614298465e35b00b17c75d12a2e29b5b626 doc_id: 1013638 cord_uid: n3kln33i Objectives To explore how physicians in Dutch nursing homes practiced advance care planning (ACP) during the first wave of the COVID-19 pandemic, and to explore whether and how ACP changed during the first wave of the pandemic. Design Qualitative analysis of an online, mainly open-ended questionnaire on ACP among physicians working in nursing homes in the Netherlands during the first wave of the COVID-19 pandemic. Setting and participants Physicians in Dutch nursing homes. Methods Respondents were asked to describe a recent case in which they had a discussion on anticipatory medical care decisions, and to indicate whether ACP was influenced by the COVID-19 pandemic in that specific case and in general. Answers were independently coded and a codebook was compiled in which the codes were ordered by themes that emerged from the data. Results A total of 129 questionnaires were filled out. Saturation was reached after analyzing 60 questionnaires. Four main themes evolved after coding the questionnaires: reasons for ACP discussion, discussing ACP, topics discussed in ACP and decision-making in ACP. COVID-19 specific changes in ACP indicated by respondents included: (1) COVID-19 infection as a reason for initiating ACP, (2) a higher frequency of ACP discussions, (3) less face-to-face contact with surrogate decision makers, and (4) intensive care unit admission as an additional topic in anticipatory medical decision making. Conclusions and implications ACP in Dutch nursing homes has changed due to the COVID-19 pandemic. Maintaining frequent and informal contact with surrogate decision makers fosters mutual understanding and aids the decision making process in ACP. Advance care planning (ACP) has changed in Dutch nursing homes due to the COVID-19 pandemic regarding the reasons for ACP discussion, how ACP was discussed, the topics discussed in ACP and decision-making in ACP. Worldwide, nursing homes have been hotspots of COVID-19 mortality. 1 During the first wave of the COVID-19 26 pandemic, mortality rates in long-term care facilities in the Netherlands doubled, with an excess mortality of 27 5200 deaths between the 9 th of March and the 10 th of May, 2020. 2 Of nursing home residents who tested 28 positive for the novel coronavirus (SARS-CoV-2) during the first wave, 42% died within 30 days. 3 The high 29 morbidity and mortality rates among this population underline the importance of advance care planning (ACP) 30 during the COVID-19 pandemic. 4,5 31 Advance care planning (ACP) enables individuals to align their future medical treatment and care with their 32 personal goals and preferences. 6,7 ACP becomes increasingly important with increasing frailty. 8 Residents of 33 nursing homes comprise a frail population, for whom ACP is of the utmost importance. 34 In Dutch nursing homes, proactive on-site medical care during office hours as well as on-call 24-hour medical 35 care is provided by elderly care physicians, a medical specialty that encompasses generalist and specialist 36 competencies. 9, 10 The three year vocational training for elderly care physicians focuses mainly on primary and 37 specialized care for frail older people including ACP with patients and their surrogate decision makers. 10 Hence, 38 elderly care physicians have broad experience in practicing ACP with nursing home residents. 39 According to the Dutch association of elderly care physicians, typical occasions for ACP are admission to a 40 nursing home, regular biannual multidisciplinary meetings and acute illness or decline in health including 41 imminent death. 11 ACP is practiced by an elderly care physician or by other physicians or nurse practitioners 42 under supervision of the elderly care physician. 43 An important part of ACP is discussing preferences and wishes regarding future medical treatment decisions. 7 44 Probably, the COVID-19 pandemic affects ACP discussions and specifically anticipatory medical care decision 45 making in nursing homes. Physicians, residents, and their surrogates noticed the limited treatment options in 46 severe cases and the poor prognosis of SARS-CoV-2 infections among residents of nursing homes. 8 The questionnaire consisted of three parts (Appendix 1). First, sociodemographic characteristics were assessed. 74 Second, we asked to describe the last case in which the respondent had an ACP discussion. We asked whether 75 the treatment policy before the ACP discussion was curative (the treatment goal is to cure disease), palliative 76 (the treatment goal is to optimize the quality of life, prolonging life is acceptable), or symptomatic (the 77 treatment goal is to optimize quality of life, prolonging life is unacceptable). Next, we asked whether or not the 78 ACP discussion resulted in change of physician treatment orders. We asked who participated in this discussion 79 and in which way the discussion had technically taken place. Next, we asked whether the following factors 80 played a role in the ACP discussion: medical situation, preference of the resident, preference of the surrogate, 81 professional view of other professionals, and COVID-19 related factors. Finally, we asked respondents whether 82 J o u r n a l P r e -p r o o f they judged that ACP had been influenced by the COVID-19 pandemic in the specific case they described, and 83 whether the pandemic was of influence on ACP in general. 84 All questionnaires were distributed amongst five researchers, who were all practicing physicians in nursing 86 homes at the time of the data collection. The analysis encompassed five steps: (1) introduced, all previously coded questionnaires were checked again. An iterative approach (the process of 92 going back and forth between the data, the codes and themes) was followed across the different steps to 93 ensure a systematic analysis. This approach was followed until saturation had been reached. After saturation 94 had been reached at 60 questionnaires, ten more questionnaires were checked to make sure no new 95 information was missed. After that, all remaining questionnaires were screened for new information to ensure 96 saturation. 97 Descriptive statistics were used to report characteristics of the respondents. We used Microsoft Word and 98 Microsoft Excel to create the codebook and themes. 99 Respondents 102 We received 129 questionnaires from practitioners. One practitioner did not work in a nursing home at the 103 time of the questionnaire and was therefore excluded. One respondent was a medical student and therefore 104 excluded. Respondent characteristics (n = 127) are shown in Table 1 . Answers to the multiple choice questions 105 regarding the cases described by the respondents (n = 127) are shown in Table 2 . 106 J o u r n a l P r e -p r o o f † Multiple attendees could be present. In all but six cases, the patient and/or the surrogate was present. ‡ Multiple means of communication could be used in one case. § Multiple topics could be discussed in one case. Advance care planning 109 The respondents' answers to the questionnaire could be arranged in four themes. The four themes are: 110 reasons for ACP discussions, discussing ACP, topics discussed in ACP and decision-making in ACP. Within these 111 themes, we distinguished how ACP was practiced, and what had changed due to the COVID-19 pandemic. We 112 included all cases, without adjudicating whether the case referred to an ACP discussion (regarding a medical 113 problem that might evolve in the future), or to a discussion on actual decision-making (regarding a medical 114 problem that is already there). In the following paragraphs we will elaborate on the respondents' answers on 115 the four themes. 116 In some cases, the COVID-19 pandemic served as a trigger for an ACP discussion. In other cases, the reasons for 118 the ACP discussion were not related to the COVID-19 pandemic. Generally, ACP was started at an earlier stage 119 because of the pandemic. 120 Respondents were clear about their reasons for starting an ACP discussion. 121 Some described a case in which the reason to start this discussion was not affected by the COVID-19 pandemic. 122 Those reasons included admission to a nursing home, a biannual multidisciplinary meeting, acute illness or 123 decline in health, including imminent death. 124 Generally, there was a tendency to start an ACP discussion in an earlier stage during the COVID-19 pandemic. 138 However, some respondents explicitly mentioned that their decision making did not change at all, for example 140 as they were very keen on early anticipatory medical care decision making beforehand. 141 am a very cautious physician and make agreements on policy as restrictive as possible." CID 234 143 The theme discussing ACP concerns contact with surrogates, mode of conversation with surrogates and the 145 decision making process. 146 Visiting restrictions were implemented to minimize the traffic on nursing home units and thus reduce the 147 introduction of COVID-19. Due to the visiting restrictions, frequent face-to-face contact with surrogates was 148 impossible. On top of that, respondents indicated that they themselves visited nursing home units only when 149 this was strictly necessary. Our respondents indicated these restrictions had two implications. 150 The first implication was that ACP discussions with surrogate decision makers more commonly took place by 151 phone or video calling. When having the ACP discussion with the patient themselves, it was a bedside 152 discussion frequently using full personal protective equipment (PPE). Sometimes surrogates and other family 153 members joined that discussion by phone. Respondents mentioned upsides and downsides of this way of communicating. The upsides of having ACP discussions by (video)phone were the ability to speak to more 155 family members simultaneously, and the convenience of scheduling calls, as compared to face to face 156 meetings. Over time, respondents became more experienced in making decisions by phone or online. The second implication was that due to the visiting restrictions, all multidisciplinary meetings -in which ACP 174 was routinely performed -were postponed. Our respondents mentioned this as an impeding factor, as ACP 175 could not be performed regularly as usual. In this study, we explored how physicians working in Dutch nursing homes practiced ACP during the COVID-19 257 pandemic, and whether this had changed compared to before the COVID-19 pandemic. Four themes emerged 258 from the data: (1) reasons for ACP discussion, (2) discussing ACP, (3) topics discussed in ACP, and (4) The media coverage on the COVID-19 pandemic facilitated ACP discussions regarding anticipatory medical care 275 decisions in several ways. First, our study shows that surrogate decision-makers were generally well-informed 276 concerning the poor prognosis of COVID-19 for frail older people and receptive for ACP discussions. Also, our 277 respondents, elderly care physicians, noted they started discussing ICU admission more regularly during the 278 COVID-19 pandemic. Other studies have shown that before the COVID-19 pandemic, elderly care physicians 279 hesitated to discuss ICU admission in advance and that during the COVID-19 pandemic, anticipatory medical 280 care discussions were discussed more often. 18,19 281 This is corroborated by a study, which also points out the difficulties in assessing the best interest and risk of 283 decision making not in the patients' best interest during a pandemic. 20 Factors of influence were: the patients' 284 frailty and prognosis, the patients' personal convictions and behavior, and perceived individual benefits and 285 risks of different treatment options and treatment settings. These factors also played a role before the COVID-286 19 pandemic. 21 The COVID-19 pandemic increased surrogate's awareness of the possibility to forego 287 burdensome life-prolonging treatments with little potential benefit. Also, the more lenient visitor restriction 288 policies in nursing homes during terminal illness were taken into consideration. Some respondents mentioned 289 pressure on hospitals and ICU as a factor, probably because they became more aware of their gatekeeper 290 function during the pandemic. 22 The results from this study underline the importance and fluidity of ACP 291 discussions in nursing homes as to facilitate discussions on the right care for the individual patient. This is an 292 endorsement for the advancement of ACP worldwide in care for older patients and nursing home residents. 293 Our study has several strengths. First, by distributing the questionnaire via the professional newsletter of 295 Verenso we were able to potentially reach nearly all of the elderly care physicians in the Netherlands. We 296 surveyed many elderly care physicians simultaneously, despite social distancing measures and the high 297 workload of elderly care physicians during the COVID-19 pandemic. 298 Second, because the questionnaire was sent out at the end of the first wave of the COVID-19 pandemic, the 299 described ACP discussions for nursing home residents in The Netherlands took place during the COVID-19 300 pandemic. Third, because of the timing (during the pandemic) and the study design (description of the most 301 recent ACP discussion), there was a limited recall bias. Finally, saturation had been reached after analyzing half 302 of the questionnaires, indicating that all relevant topics were explored. 303 There are also some limitations. First, due to the use of a questionnaire, we were not able to respond to the 304 answers of our respondents and ask further questions, although the questionnaire was open-ended with ample 305 possibility to elaborate on the topics. Second, the results are based on self-reported answers with the risk of 306 limited self-reflection. Third, despite pilot-testing the questionnaire, some respondents have misunderstood 307 the questions as we could see that theirs answers did not relate to the question that we meant to ask. 308 Are you (or were you during the COVID-19 pandemic) a practitioner in a nursing home? We are asking you to first fill in some information about yourself. After that, the questionnaire will continue. You indicated that you were not a practitioner in a nursing home during the COVID-19 pandemic. You are not required to fill in this questionnaire. Thank you for your interest. We would like to ask you to look back on the way you made anticipatory medical decisions concerning residents of nursing homes during the COVID-19 pandemic. Imagine the last case in which you intentionally started the conversation on anticipatory medical decisions. What was the treatment policy in this case? On which ward did the patient in this case reside? Describe the last case in which you intentionally started the discussion on anticipatory medical decisions. What was the reason for the discussion? How was the discussion conducted 'technique wise'? Did communication happen via telephone, or, for example, a videocall? How did the means of communication mentioned above affect the process of anticipatory medical decision making? There will now follow a few questions about the factors that possibly played a role in making anticipatory medical decisions in the case. In what manner did the medical situation of a resident play a role in the anticipatory medical decision making? In what manner did the personal preference of the resident play a role in the anticipatory medical decision making? In what manner did the personal preference of the resident's next of kin play a role in the anticipatory medical decision making? In what manner did other professionals (care, practitioners, etc.) play a role in the anticipatory medical decision making? In what manner did COVID-19 related factors play a role in the anticipatory medical decision making? Please provide an explanation for your answer In the questions above, we asked you to describe one case. To what extent do you think the anticipatory medical decision making in this case was affected by the COVID-19 pandemic? To what extent do you think the general anticipatory medical decision making in your daily practice was affected by the COVID-19 pandemic? Please provide an explanation for your answer You have now reached the end of this questionnaire. We thank you kindly for your answers. 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An exploratory report about 343 multidisciplinary collaboration concerning advance care planning in the nursing home The Impact of COVID-19 Pandemic on Long-Term Care Facilities 347 Worldwide: An Overview on International Issues Dilemmas With Restrictive Visiting Policies in Dutch Nursing 349 Homes During the COVID-19 Pandemic: A Qualitative Analysis of an Open-Ended Questionnaire With 350 Evaluating Perspectives of Relatives of Nursing Home 352 Residents on the Nursing Home Visiting Restrictions During the COVID-19 Crisis: A Dutch Cross-353 Sectional Survey Study A Structured Tool for Communication and 355 Care Planning in the Era of the COVID-19 Pandemic Allowing Visitors Back in the Nursing Home During the 357 COVID-19 Crisis: A Dutch National Study Into First Experiences and Impact on Well-Being Reopening the doors of Dutch nursing homes during 360 the COVID-19 crisis: results of an in-depth monitoring How COVID-19 Changed Advance Care Planning: Insights From the West 362 Virginia Center for End-of-Life Care Discussing ICU admission in the nursing home. The role of the elderly care 364 physician in decision making about IC for nursing home residents: literature study on the Best interests versus resource allocation: could COVID-19 cloud decision-making 368 for the cognitively impaired Experiences and involvement of family members in transfer 370 decisions from nursing home to hospital: a systematic review of qualitative research Unmet needs, health policies, and actions during the 373 COVID-19 pandemic: a report from six European countries This study shows that ACP in Dutch nursing homes has changed due to the COVID-19 pandemic. In ACP 310 discussions by elderly care physicians, ICU admission has become a regular topic of discussion. Awareness of 311 the impact of ICU admission for nursing home residents might have a lasting effect on ACP. There was less face-312 to-face contact with surrogate decision makers due to visitor restrictions and social distancing measures. This 313 prompted the use of technologies for frequent, low-threshold, informal contact between physicians and 314 surrogate decision makers. Maintaining these practices after the COVID-19 pandemic may foster mutual 315 understanding and aid the decision making process. 316 J o u r n a l P r e -p r o o f None 318