








key: cord-272772-zqmychmr
authors: Stall, Nathan M.; Johnstone, Jennie; McGeer, Allison J.; Dhuper, Misha; Dunning, Julie; Sinha, Samir K.
title: Finding the Right Balance: An Evidence-Informed Guidance Document to Support the Re-Opening of Canadian Nursing Homes to Family Caregivers and Visitors during the COVID-19 Pandemic
date: 2020-08-03
journal: J Am Med Dir Assoc
DOI: 10.1016/j.jamda.2020.07.038
sha: 
doc_id: 272772
cord_uid: zqmychmr

Abstract During the first few months of the COVID-19 pandemic, Canadian nursing homes implemented strict no-visitor policies to reduce the risk of introducing COVID-19 in these settings. There are now growing concerns that the risks associated with restricted access to family caregivers and visitors have started to outweigh the potential benefits associated with preventing COVID-19 infections. Many residents have sustained severe and potentially irreversible physical, functional, cognitive, and mental health declines. As Canada emerges from its first wave of the pandemic, nursing homes across the country have cautiously started to reopen these settings, yet there is broad criticism that emerging visitor policies are overly restrictive, inequitable and potentially harmful. We reviewed the nursing home visitor policies for Canada’s ten provinces and three territories as well as international policies and reports on the topic to develop evidence-informed, data-driven and expert-reviewed guidance for the re-opening of Canadian nursing homes to family caregivers and visitors.

for nursing homes. 2, 3 As the community prevalence of COVID-19 continues to decrease in 23

Canada, and regions across the country begin phased re-openings, experts and advocates have 24 grown increasingly concerned that subsequent visiting policies and family caregiver access to 25 nursing home settings remain overly restrictive, causing substantial and potentially irreversible 26 harm to the health and wellbeing of residents. 4 A more balanced approach is needed that both 27 prevents the introduction of COVID-19 into nursing homes, but also allows family caregivers 28 and visitors to provide much needed contact, support and care to residents, to maintain their 29 overall health and wellbeing. 30 We reviewed the emerging nursing home visitor policies issued by Canada's ten provincial and 32 three territorial governments (see Appendix 1) as well as international policies and guidance on 33 the topic in order to recommend, evidence-informed and data driven guidance to support a 34 balanced, risk-mitigated re-opening of Canadian nursing homes to family caregivers and 35

visitors. 5 While this guidance is specific to nursing homes, many of the guiding principles and 36 planning assumptions presented in this document could be applied to other congregate settings 37 such as retirement homes and group homes. 38 39 These efforts should be executed with the support and input of family caregivers, existing 40 resident and family councils as well as from nursing home medical directors, administrators, 41 involved primary care and specialist providers, and local IPAC and public health leadership. We 42 also recognize that reopening nursing homes will require additional resources including 43 government funding for personal protective equipment (PPE), COVID-19 testing, and addressing 44 chronic staffing shortages to support visitor protocols. Importantly, homes must ensure that 45 existing care resources are not reduced to support this implementation, which could negatively 46 impact resident care, especially for those residents who do not have family caregivers or visitors. 47 48

Family Caregiver: is any person whom the resident and/or substitute decision-maker identifies 51 and designates as their family caregiver. As essential partners in care, they can support feeding, 52 mobility, personal hygiene, cognitive stimulation, communication, meaningful connection, 53 relational continuity, and assistance in decision-making. 4 54 55 Essential Support Worker: is a person performing essential support services (e.g., food delivery, 56 inspector, maintenance, or personal care or health care services such as phlebotomy or medical 57 imaging). 6 

General Visitor: is neither a family caregiver nor an essential support worker and is "visiting" 60 primarily for social reasons. 6 

In reviewing the literature, consulting with national and international experts (see 65 Acknowledgements), and hearing from both residents, and their family caregivers and visitors 66 through various forums, we have identified six core principles and planning assumptions as 67 foundational and fundamental to any current and future guidelines. These recommendations 68 focus on family caregivers and general visitors rather than essential support workers and nursing 69 home staff, and are made with the acknowledgement that the approach to visiting may need to be 70 dynamic based on the community prevalence of COVID-19. 71 72 1. Policies must differentiate between "family caregivers" and "general visitors". Residents, 73

determine who is essential to support them in their care. 75

It is imperative that visitor policies identify and distinguish "family caregivers" from "general 77 visitors" who are visiting primarily for social reasons. While socialization is certainly important, 78 family caregivers as partners in care should be prioritized to support resident health and 79 wellbeing. Family caregivers are those individuals who assume essential caregiving 80 responsibilities for a spouse, family member, or friend who needs help because of limitations in 81 their physical, mental, or cognitive functioning, and are essential to meeting the needs of 82 residents especially in the face of chronic staffing shortages. [8] [9] [10] [11] [12] [13] Family caregivers also help 83 ensure that all residents receive culturally safe and appropriate care, especially for LGBTQ2S+ 84 and Indigenous residents and/or those with language barriers. Importantly, while the term family 85 caregiver is widely used, it is important to recognize that approximately 15% of all caregivers are 86 not related to their care recipients, including some who may be privately hired. 8 The importance 87 of identifying family caregivers is that they are not accessing the nursing home primarily for 88 social reasons, but rather to provide services and care such as assistance with feeding, medical 89 decision-making, and management of responsive behaviours among residents living with 90 dementia. 14 91

While the definition of family caregiver has been operationalized in various ways, in a resident-93 centred and caregiver-partnered long-term care system, residents must have the sole authority 94 and autonomy to determine who is essential to support them in their care; substitute decision 95 makers should make this determination for incapable residents. 4 This differs from approaches 96 such as those used in Australia that have relied on identifying family caregivers as those 97 individuals with a clearly established and regular pattern of involvement in contributing to the 98 care and support of residents prior to the COVID-19 pandemic. 15 This definition fails to 99 recognize that some individuals may be willing and able-or need to-assume caregiving 100 responsibilities to assist with special care needs and staffing shortages that have been further 101 aggravated during the COVID-19 pandemic, or provide care which they may not have been able 102 to previously. It also fails to recognize that as conditions change during a pandemic, so too might 103 a resident's desire or need for support change, and their ability to designate family caregivers 104 must be flexible, consistent with their ongoing right to choose. It also fails to address that 105 limiting or eliminating congregate dining and recreational activities during the COVID-19 106 pandemic may now necessitate that those who were once "general visitors" become "family 107 caregivers" to better address unmet resident needs. 108

Other definitions being proposed also violate the principles of resident-centred and caregiver-110 partnered care, including those that identify family caregivers as those individuals providing 111 services that would otherwise require a private duty caregiver; this definition could be open to 112 interpretation and a source of disagreement between nursing homes, residents and their 113 families. 14,16 114 115 Given there are both diverging definitions and interpretations of who constitutes a family 116 caregiver, residents, substitute decision makers and their families must retain the authority and 117 autonomy to designate their own family caregivers and this should be clearly documented in the 118 resident's care plan and record. 4 Initially, each resident should be supported in allowing the 119 reintroduction of at least two family caregivers, and these individuals should receive a caregiver 120 identification card or badge. 17,18 121

125 Strict blanket 'no visitor' policies were enacted early on during the pandemic with the 126 recognition that visitors were potential vectors for the introduction of COVID-19 infection into 127 nursing homes and transmission back into the wider community. 19 When these policies were 128 implemented, nursing homes were more vulnerable to COVID-19 outbreaks for several reasons: 129 1) the extent of asymptomatic transmission and atypical presentations of COVID-19 were not 130 fully appreciated, 2) access to timely and comprehensive COVID-19 testing was limited, 131

impairing homes ability to identify outbreaks, and determine scale and scope, including 132 symptomatic and asymptomatic cases, 3) many homes had not fully adopted robust IPAC 133 approaches including universal masking of staff and enabling them to work at only one 134 healthcare setting, and 4) access to PPE was more limited. 20-22 135 136 Now that many homes are working to address these deficiencies, it is essential that we also focus 137 on the considerable detrimental effects of the ongoing lockdown of nursing homes and restricted 138 access to family caregivers and general visitors. 23, 24 Many residents have experienced severe and 139 potentially irreversible functional and cognitive declines, deteriorations in physical and mental 140 health, severe loneliness and social isolation, worsening of responsive behaviours and increased 141 use of psychotropic medications and physical restraints. [24] [25] [26] [27] Worse, many residents have died 142 alone without family present to support end-of-life needs. While virtual visiting was 143 implemented to try and meet the psychosocial needs of residents, it is no substitute for family 144 caregivers who prior to the lockdown were providing substantial care and support for many 145 residents. 146 147 These negative outcomes have raised concerns that the risks associated with ongoing blanket 148 visitor restrictions outweigh the benefits associated with preventing COVID-19 outbreaks in 149 nursing homes, particularly in Canadians jurisdictions with low rates of community 150 transmission. 2 Additionally, these restrictions may be violating the autonomy of residents and 151 their right to make informed and risk-based decisions which prioritize their access to visitors 152 over the risks of them contracting COVID-19. In Ontario, the Long-Term Care Homes Act 153 recognizes the right of every resident to "receive visitors of his or her choice…without 154 interference", which is legally required and enforceable under contract as set out in the Act. 28 155

There are also several active legal challenges across the country arguing that fundamental 156 resident and human rights are being violated. 29 Visitor policies must prioritize equity over equality, recognizing that a "one size fits all" 170 approach is neither optimal nor practical. Whereas equality would mean giving all nursing home 171 residents the same access to visitors, equity means giving nursing home residents the right 172 amount of access they need to maintain their health and wellbeing. 7 Importantly, visitor policies 173 must not prioritize the convenience of the nursing homes over the best interests of their residents 174 in receiving the care and support of family caregivers and visitors. 175 176 Nursing homes must reserve the right to create and implement visitor screening protocols 177 consistent with local public health guidance and procedures for visits that maintain the safety and 178 wellbeing of all residents and staff members. However, blanket implementation of policies must 179 be avoided, and instead policies uniquely supporting family caregivers and general visitors must 180 be both flexible and compassionate, recognizing that some of the new conditions and procedures 181 surrounding visiting may not work for all residents, family caregivers and visitors. 15, 31, 32 This 182 includes providing flexibility around the timing of visits (e.g., some visitors may have work and 183 other caregiving duties), the location of visits (e.g., some residents and/or visitors may not be 184 able to tolerate outdoor visits because of inclement weather and/or bedbound status), the length 185 or frequency of visits (e.g., as some visitors may be traveling long distances, longer visits should 186 be considered), absolute restrictions on physical contact (e.g., some residents with cognitive 187 impairment and/or behavioural issues may neither be able to understand nor comply with 188 physical distancing). 15 

It is imperative that individual homes, with the support of local health authorities and public 215 health units, collect and report data on COVID-19 cases as it relates to reopening. In Canada, the 216 National Institute on Ageing Long-Term Care COVID-19 Tracker could support this (https://ltc-217 covid19-tracker.ca). 33 It is recognized that many decisions about balancing different risks to 218 residents, staff, family caregivers and visitors to nursing homes are difficult. However, it is also 219 true that it is less difficult to impose restrictions than it is to remove them. Public health and 220 governmental authorities should also be actively working to use modelling and evidence to 221 remove visitor restrictions as quickly as possible as regional community prevalence declines. In order to find the right balance between infection prevention and supporting resident health and 257 wellbeing, the six core principles and planning assumptions described in this guidance document 258 were used to create recommended, evidence-informed, and expert-reviewed visitor policies for 259 family caregivers (Table 1 ) and general visitors ( Table 2 ) to nursing homes. 260

All authors meet the International Committee of Medical Journal Editors (ICMJE) criteria for authorship and have no competing interests, financial or otherwise.

Recommended policy 1. Defining an "family caregiver"

• Residents, substitute decision makers and their families must retain the authority and autonomy to determine who is essential to support them in their care and designate their own family caregivers. 4 • Governments, public health authorities and homes must not define who is a family caregiver, especially on the basis of either an individual's caregiving involvement and role prior to the pandemic or by identifying those individuals providing services that would otherwise require a private duty caregiver.

• A resident may designate at least two family caregivers.

• Similar to guidance from Alberta Health Services, a resident may identify a temporary replacement family caregiver if the primary designated family caregivers are unable to perform their roles for a period of time; the intent is not for designates to change regularly or multiple times but to enable a replacement, when required. 36 3. Allowable number of family caregivers in the nursing home at one time

• One family caregiver per resident should be allowed in the home at a time.

• Under extenuating circumstances (i.e., end-of-life), this allowable number should be flexible.

• As essential partners in care, family caregivers should have access to areas both outside and inside the home (similar to staff members) but must maintain physical distancing from other residents and staff. They should be provided with an individualized caregiver identification and/or badge, and must abide by all IPAC and PPE requirements and procedures concerning staff members of the home. 17,18

• In order to promote relational continuity and meet the ongoing needs of residents, family caregivers should still have access to the home during a COVID-19 outbreak, as long as the following conditions are met: -The family caregiver attests that they understand and appreciate they are entering a home under outbreak and that they may be at increased risk of COVID-19 infection -They must be trained in IPAC procedures and the proper use of PPE and abide by all outbreak-related policies that apply to staff members of the home.

• No restrictions as long as it does not negatively impact the care of other residents or the ability of other family caregivers to provide care and support.

• As partners in care, family caregivers should be subjected to the same COVID-19 screening requirements as nursing home staff. If asymptomatic COVID-19 testing is recommended, family caregivers should be provided with the same access to testing as staff members of the home.

• As partners in care, family caregivers should receive an orientation and be educated and trained to follow the same IPAC and PPE requirements and procedures as staff members of the home, including remaining masked at all times. 3 The Ottawa Hospital has designed a PPE training video specifically for family caregivers: www.youtube.com/watch?v=GkAYc5wcn0c&feature=youtu.be • Homes must maintain ample PPE supply to enable family caregivers' participation in care.

• Failure of family caregivers to comply with these procedures could be grounds for loss of their rights to participate in care as family caregivers, which should be appealable.

• Outdoors: similar to guidance from the Saskatchewan Health Authority, outdoor visits can include more than one visitor at a time, provided that physical distancing can be maintained. Additionally, family members from the same household and/or bubble should not have to physically distance from one another. • Indoors: one visitor per resident in the home at a time. Similar to guidance from the British Columbia Centre for Disease Control, a visitor who is a child may be accompanied by one parent, guardian or family member. 37

• Outdoor visits should be prioritized, when possible and feasible, to both minimize the risk of COVID-19 transmission and to maximize the number of possible visitors. Provinces like Manitoba plan to construct outdoor, all-season visiting shelters. 38 • When outdoor visits are not feasible for either the resident or the visitor (e.g. for cognitive, psychiatric or physical reasons), the home must provide an indoor alternative which provides ample open space for physical distancing and adequate ventilation. • Exceptional circumstances may sometimes necessitate the visitor meeting the resident in their room, but this should be a last resort if none of the previously noted alternative options are deemed feasible.

• If the home goes into COVID-19 outbreak status, general visits may need to be temporarily suspended (if advised by the local public health authority), but if the outbreak does not involve the entire home, consideration should be given to suspending visits only on the floor or unit under outbreak. Virtual visits must be upscaled during suspensions of in-persons visits.

• As per the Ontario Ministry of Long-Term Care, visits should be at least 60 minutes/visit and residents should have access to visitors at a minimum of once per week. 39 

• Visitors must pass an active screening questionnaire (which may include an on-site temperature check) but there should be no requirement for COVID-19 testing for outdoor and physically distanced visits. If exceptional circumstances necessitate a visitor entering the resident's room, they should be subject to the same screening and testing requirements as family caregivers.

• Visitors must remain masked (cloth or surgical/procedure for outdoor visits and surgical/procedure for indoor visits) at all times and maintain at least 2 metres of physical distance from the resident they are visiting. Visitors should be encouraged to bring their own cloth masks for outdoor visits, but appearing without a mask should not be a barrier to visiting. • If masking of visitors causes distress to the resident (e.g. for cognitive or mental health reasons) or poses difficulties with either recognizing (e.g. cognitive impairment) or understanding the resident (e.g. hearing-impaired residents who rely on lipreading) a face shield which wraps around the chin or a transparent mask can be considered as alternatives. • Consideration may be given to allowing brief hugs and handholding while maintaining as much distance as possible between the faces of the resident and visitor, and ensuring the availability of alcohol-based hand sanitizer for prompt and effective hand hygiene both immediately before and after these encounters. 40 • Homes must maintain ample PPE supply to enable resident visits.

• Failure of visitors to comply with procedures could be grounds for a loss of visiting rights, which should be appealable.

• Visitors must have access to bathrooms (an accessible outdoor sheltered bathroom or designated indoor bathroom).

• Outdoor visiting must occur in weather protected settings (e.g. a shaded area with hydration for hot weather, a sheltered area for rain, or a heated area for colder weather).

• Residents designated as being "critically ill" or at "end-of-life" (<14-day life expectancy) should be provided with the same level of access that would be rendered to a family caregiver. If visitors need to enter the home under these circumstances, they should be subject to the same conditions and procedures as "family caregivers". 

IPAC guidance will be provided. 7. End-of-life considerations:

-Designated Essential Visitor is permitted to visit "as much as required". -There is no limit on the number of different individuals who can visit overall, but visits must be coordinated with the care team and the site. -Up to two Designated Family/ Support Persons at a time are allowed to visit as long as physical distancing can be maintained between the family/support persons.

*May leave the home for medically necessary care or treatment.

Yes, defined as:

-Visits considered paramount to resident care and well being, such as assistance with feeding, communication, personal care, emotional support or mobility.

-Existing registered volunteers providing services as described above only. Yes, defined as:

-"Caregivers who provide or would like to provide significant assistance and support to a loved one to meet their needs and contribute to their integrity and well-being. Assistance and support may include: helping with meals; supervising and being attentive to the person's overall condition; providing support with various daily or recreational activities; assistance with walking; providing moral support or comfort".

-A significant caregiver…residents must have received support from the person before visiting restrictions were put in place due to COVID 19.

-Visitors are only allowed in CHSLDs, intermediate or family-type resources (SAPA program) or private seniors' homes without a COVID-19 outbreak. A visitor is anyone who wants to visit the person in the home and who does not meet the criteria to be identified as a caregiver.

1. May designate more than one essential family caregiver. 2. A maximum of two essential family caregivers from the same household can be in the home at a time. 3. Yes, as of June 18, 2020. 4. No limit on frequency or on length of time. 5. Self-monitoring of symptoms.

No testing requirement. Most sign a consent form stating that "their decision was informed and voluntary, with full knowledge of the associated risks and knowing that they could become infected during their visits or even infect their loved one." 6. Must remain continuously masked and wear PPE as required. Will be given a face shield. Training of visitors and procedural masks must be available in sufficient quantity for visits to be allowed. 7. Compassionate visits will be permitted when death is imminent (24-48 hours). A maximum of two visitors are allowed at one time.

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One person per resident. 3. Not specified. 4. Not specified. 5. Must be screened upon entry and includes temperature checks

Must be supported by staff in appropriately using PPE

Maximum of two visitors at a time

Outdoor visits only in designated areas on the grounds

Must wear a non-medical mask and maintain physical distancing. Must follow IPAC guidelines. May remove mask once at the designated visiting area if physical distancing can be maintained and if needed for effective communication

documents/COVID-19-Management-in-Long-Term-Care-Facilities-Directive.pdf 3

Indoors and outdoors

Self-monitoring of symptoms

Must remain continuously masked in the home and wear PPE as required. Training of visitors and procedural masks must be available in sufficient quantity for visits to be allowed

We gratefully acknowledge the numerous experts who reviewed and commented on this guidance -their names are listed below. None of them received compensation for their contributions. 

*Residents allowed outside as long as they are physically distancing.Yes, defined as:-Where the resident's quality of life and/or care needs cannot be met without the assistance of the "Designated Essential Visitor".-May be a family member, friend, religious and spiritual advisor or paid caregiver. Appendix 1: Nursing home visitor policies for Canada's ten provinces and three territories (as of July 14, 2020) 6 . Creative solutions:-Some homes to set up large, 3-sided plexiglass cube that will shield residents from their visitors to allow for enhanced communication; -Plans to add disposable gloves that would 'poke through' the plexiglass allowing families to hug; -Large, marquis-style tents that will be put up in the gardens and available in the rain or shine. 

