Visitor Restrictions and Health Care Decision-Making Rights in BC: Comments on the Seniors Advocate Report, Staying Apart to Stay Safe
November 16, 2020
BY Sara Pon
The Seniors Advocate conducted a survey about the COVID-19 visitor restrictions in long-term care and assisted living. The results of this survey were released on November 3, 2020. The survey was open to the public, and respondents were largely family visitors of residents in long-term care (49%). Other respondents included family visitors of assisted living (14.4%), residents of long-term care (6.1%), and assisted living residents (7.7%).
This blog will outline the results of the survey and the Seniors Advocate’s recommendations to changes to the visitor policy. This blog will then outline the laws on support with decision-making and consent for medication as they apply to the visitor policy. See the CCEL’s past blog post for a description of the visitor policies long-term care (LTC) and assisted living (AL).
Pre-pandemic, 55% of the survey respondents were visiting their family members several times per week, and these visits usually lasted at least an hour. These visitors usually performed a variety of personal care tasks as well as social visits.
The survey asked respondents about their experience with the visitor restrictions at the beginning of the pandemic of only allowing essential visitors. Only 48% of people were informed about the fact that they could apply to be an essential visitor. Only 14% of respondents were designated essential visitors. These visits were typically once per week or less, and only 30 to 60 minutes long. 42% of the respondents said they or another person had applied to be an essential visitor. 45% of these applications were denied. Half of respondents appealed the denial, and half of these appeals were denied.
The survey asked respondents about their experience with the current visitor policy of one designated visitor per resident. 61% of respondents were designated visitors, and half were the adult child of the resident. Most of the visits were happening in indoor common rooms, with 30% occurring outdoors, and only 21% in the resident’s room. Most of these visits were observed by a staff member. Half of respondents said visits were limited to once per week and were for 30 to 60 minutes. Most people had to use masks, go through health screenings, follow hygiene measures, and have their temperature checked. 77% of respondents were not allowed to touch their loved ones.
The survey asked specific questions if the respondent’s family member was designated palliative or had died during COVID-19, which occurred for 10% of survey respondents. Respondents found the measures too restrictive during the time the resident was palliative. Half of respondents did not get enough time with their loved one. 83% of respondents reported that they were limited on how many people could visit, with 48% of respondents only being allowed one visitor and 10% allowed no visitors. This occurred despite palliative care being an essential visit, and the visitor policy allowing more than one visitor when the resident is palliative. 84% of respondents had to stay at least 6 feet away from their loved one even in the last few days of life, and 23% were not allowed to touch their loved one even in the final days. In most cases, the resident died within a week of being declared palliative. Palliative care is not an uncommon occurrence in long-term care – the Seniors Advocate noted that while 151 residents of AL and LTC have died of COVID-19, 4,500 have died from other illnesses or conditions during this period.
The survey asked respondents how concerned they were about contracting COVID-19 (if a resident) or having a loved one contract covid (if a visitor). The majority of respondents said they were not very concerned about contracting the virus, and respondents were less concerned about the virus now than they were at the beginning of the pandemic. For visitors, 20% were not worried, 38% were a little worried, 29% were somewhat worried, and only 12% were very worried. Among residents, 41% were not worried, 31% were a little worried, 19% were somewhat worried, and only 6% were very worried.
The Seniors Advocate asked respondents whether a resident was removed from their residence during COVID-19, as there was a lot of discussion at the beginning of the pandemic of whether residents of AL or LTC should leave and live in the community. For AL, 20% of respondents said the resident left AL. For LTC, only 5% of respondents said the resident left LTC.
Impact of Visitor Restrictions
The survey and report examined the impact of the visitor restrictions on the residents. The survey asked family members how the resident’s health and well-being had changed from the beginning of the pandemic. 61% of family members reported that the resident was worse than the last time they saw them, including the resident’s physical health, cognitive health, and emotional well-being. This is a larger number than should be expected. Data on LTC (InteRAI) typically finds that 25% of residents have their condition worsen over that period, so the self-reported numbers during COVID-19 are double what is expected. Additionally, the Seniors Advocate looked at prescribing data, and found a 7% increase in antipsychotic medication prescriptions during the COVID-19 period, which was a significant increase from pre-COVID levels.
Most of the survey respondents believed there should be some form of visitor restrictions in place for LTC and AL, but thought the current restrictions are too harsh. Most respondents believed there should be more visitors allowed per resident, visits should be occurring more often per week, be of longer durations, and be less monitored by staff. Respondents were supportive of having more relaxed restrictions for the spouse of the resident and for residents who are palliative.
The Seniors Advocate noted in the report that the government needs to listen to residents when making visitor restrictions. Residents are less afraid of contracting COVID-19 than of being alone at the end of their lives. Residents in LTC often have limited time left in their lives and want to spend this time with loved ones. The Seniors Advocate asked why the protective measures are in place if residents cannot have a good quality of life and enjoy their remaining time with the ones they love. The Seniors Advocate strongly recommended increasing the visitors allowed, reflecting the wishes of residents and their loved ones.
The Seniors Advocate made three recommendations:
- Every resident should be able to designate an essential care partner, who can visit multiple times for week and stay longer. These essential care partners are the people providing needed personal care, mobility assistance, and communication assistance, and decision-making support. This would take some of the burden off staff by allowing families to resume the care they provided to their loved one pre-pandemic
- Residents should also be able to designate separate social visitors, who would visit less frequently than essential care partners. The exact number of social visitors would be determined based on the risk of covid in the specific community compared to the risk to the person’s health and quality of life.
- The voices of residents and families should be heard at the health authority and provincial level through the creation of a resident and family council association. Currently, only the voices of staff and industry are reflected as they have provincial associations that meet with the health authorities and government. A resident and family council association can represent the perspectives of residents and families.
The Seniors Advocate also recommended that visits be allowed to occur in a resident’s room if the resident is living in a single room (which 75% are). This would reduce the burden on staff because there would be less monitoring needed, and more visits could occur.
The Law on Support with Decision-Making and Consent
This section will outline the legislation on the rights to supported decision-making, obtaining consent from a substitute decision-maker, and consent to antipsychotic medication. Any limits on visitors in LTC and AL must still respect a resident’s right to supported decision-making, consent to medical treatments, and agreement for chemical restraints. Substitute decision-making is considered essential, and substitute decision-makers must still have access to the resident and be included in health care decisions, even during the pandemic.
Supported Decision-Making in Health Care
In BC, health care consent law includes a right to have a supporter assist with communication and decision-making. The Health Care (Consent) and Care Facility (Admission) Act (HCCA) states that all adults have the right to have a supporter help them make decisions. This right exists whether or not a person has designated a representative under a representation agreement.
Substitute Decision-Making and the Duty to Consult
The rules to consent to medication are outlined in the HCCA. All capable adults have a right to consult or refuse health care treatment, which includes antipsychotic medication. Under section 16 of the HCCA, if the adult does not have capacity to make a particular health care decisions, the health care provider must make reasonable efforts to obtain consent from the appropriate substitute decision-maker before providing medical care. The substitute decision-maker could be a representative under a representation agreement, a committee or personal guardian, or a temporary substitute decision-maker. The substitute decision-maker must consult with the person they represent, which may necessitate in-person contact. If there is an emergency, the adult is not capable, and a substitute decision-maker cannot be located, treatment can be provided without consent.
The Community Care and Assisted Living Act sets out the residents’ Bill of Rights in Assisted Living. These include the right to have visitors, to communicate with their visitors in private, and to have their family be involved in their care plans.
Agreement to Use of Antipsychotics in Long-Term Care
The Seniors Advocate Report notes that antipsychotic prescriptions in LTC have increased during the pandemic. Health care consent law discussed above applies to antipsychotic use in LTC, as it involves use of medication. However, additional rules apply to practice when medication is used as a form of restraint.
If the antipsychotic medication is being given as a form of chemical restraint, not medical treatment, the Residential Care Regulations set out the restraint requirements. Restraints can only be used when they are needed to protect adults or others from imminent harm, and not for the convenience of staff. Restraints must be as minimal as possible, and other options must have been tried first. If the restraints are being used in non-emergency situations, the adult must agree, and if the adult does not have decision-making capacity, a substitute decision-maker must agree in writing. If the chemical restraint is being used in an emergency situation where there is imminent harm, prior agreement is not needed. If the emergency restraint continues for more than 24 hours, agreement must be obtained from the adult and their substitute decision-maker.
Our 2019 report Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia revealed that health care providers do not universally understand and properly apply health care consent law in BC. Contact between a LTC or AL resident and a member of their family is a statutorily protected right in some instances. Isolation of residents from family during the pandemic raises concerns regarding how facilities and health care professionals can ensure compliance with health care consent law.
- To view BC’s current LTC and AL visitor policy, see the BC CDC website.
- For more information on health care decision-making rights, see the CCEL’s decision-making resources.
- For more information on the use of chemical restrains, see CCEL’s Conversations About Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia report.
- Alzheimer Society of B.C has created a resource to help people prepare for visits to long-term care.