COVID-19 Pandemic Measures: Ethical Consequences of Barring Families From Hospitals and Long-term Care Centers
Families Are Not Visitors!
The serious vulnerabilities borne by many older adults — commonly referred to as “seniors” — are being disturbingly revealed amidst the course of this devastating COVID-19 pandemic.
It is already quite widely recognized that some older adults may be significantly disadvantaged, especially when their physical or mental capacities may be compromised by illness or some aging processes. For this reason, a number of legal provisions ensure that some older adults will have “substitute decision-makers” (usually a family member) who can make decisions on their behalf regarding their care, when they cannot make decisions for themselves.
We have government officials (e.g., Public Curator) who are specifically entrusted to oversee and investigate situations where there may be concerns about the safety or well-being of “incapacitated persons” such as some older adults.
In short, it is well-known that some older adults are profoundly vulnerable and have a right to be protected.
This focus has been inadequately highlighted in recent events that reveal disproportionate death rates, as well as other deeply disturbing hardships that are being endured by older adults.
A great deal of media attention has been paid to isolation concerns with regard to older adults living in long-term care centres or seniors’ residences, and the sadness experienced by their family members who are unable to physically spend time with them.
Institutional policies prohibiting “visitors” access to older adults in these settings have been implemented as a physical-distancing measure, with the aim of controlling coronavirus transmission.
Striving to contain a dangerously escalating pandemic that poses a particularly serious threat to older adults, I have no doubt that those who have prepared and implemented these policies have benevolent intentions.
While these measures can be useful in managing one risk — protecting older adults from COVID-19 infection — they undermine other important protections that older adults may require; specifically, representation and advocacy.
Although loneliness is a serious psychological concern that many of these older adults may be experiencing, they are also being subjected to an ethical abandonment of meaningful representation by family members who may be their legal substitute decision-makers regarding their care. At the same time, older adults who are legally capable decision-makers have lost family support in helping them interpret medical information and decide what forms of care are best for them.
Family members are not simply “visitors”. While they can provide deeply cherished company for older adults, some family members are also the most trusted people in their lives.
When I join my 93-year-old mother — whose primary language is Italian — in her encounters with physicians and other professionals, I am not merely an accompaniment. My mother relies on me to help her remember what was told to her, ensure that her own questions were raised, judge the trustworthiness of the recommendations she was given, and to help her decide what is best for her to do. At times, when I’ve noted that she seemed inhibited or intimidated in her health-care encounters, I’ve reviewed her experiences with her and she has sought my support in helping ensure that her wishes are properly heard and considered. If at some time in the future she might lose her capacity to make health care decisions for herself, either temporarily or permanently, then she will rely on me to speak and decide on her behalf by drawing on our previous health-related discussions. Many younger adults also rely on family members for this kind of support.
When older adults are barred from access to trusted family members, their vulnerability is dangerously amplified.
Blocking access to their especially-trusted family members creates a form of ethical abandonment — potentially leaving them without any form of trusted representation and advocacy to help ensure that their needs and rights are adequately respected. In such situations, some extraordinary professionals and staff members sometimes “step up” and try to fill this ethical void. This is, however, an unfair and onerous responsibility for professionals and staff, because a working relationship cannot fully substitute for a family relationship.
I recognize the crucial importance of physical distancing; I have been a health care professional for over 40 years. However, measures to manage infection-transmission risks among older adults have to be balanced with other major risks; especially the risk of losing needed representation and advocacy in ensuring their health care is aligned with their needs and wishes.
Physical distancing measures should include procedures for accommodating access to at least one key family member for each older adult. This must be done while ensuring that these “visitors” are screened for potential infection transmission risk; and they must be guided to follow needed protective measures to ensure the safety of all people within these sometimes precarious settings.
“Seniors” are persons whose dignity and right to representation and advocacy should respected as strongly as their infection risk is being protected.
Franco A. Carnevale, RN, PhD (Psych), PhD (Phil) is a nurse, psychologist and clinical ethicist. He is a Full Professor at the Ingram School of Nursing at McGill University in Montreal, Canada.