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Achieving equity and agreement: The importance of inclusion of marginalized groups in hospital policy initiatives
Pageen Manolis Small, BSN, MS
As people adjust to the impacts of the COVID-19 pandemic, many have expressed a myriad of diverse views regarding pandemic policies and who should be included in the decision-making process. The dispute may stem from lack of trust, inadequate communication, and lack of transparency. Certain groups and individuals may be underrepresented in response planning. This is particularly relevant at the community level where individual institutions serve unique populations, multiple minority groups, and those with diverse needs. Improving communication and increasing inclusion in decision-making discussions are necessary to develop management plans that are appropriate and acceptable for diverse, unique communities. As a nurse and an ethicist who has been involved in many discussions within both my community and its local healthcare institutions, I recognize a distinct need for input from diverse healthcare workers and community members.
Including more voices in the discussions would improve decision making and broaden agreement with pandemic management plans. Some may initially think that adding more voices would exacerbate disagreements and would be prohibitive to operationalizing responses in two ways. First, the logistics of larger group meetings can be challenging, particularly when many are currently facing new burdens and changing roles. Second, additional points of view add time to discussion and negotiation of decisions. This paper asserts the logistics and added time are worth the efforts. If we can promote inclusion and solicit buy-in early in the process, more comprehensive and meaningful plans can be made that will prevent disagreements that call for revision or reconsideration after the policies are in place. Individual hospitals, medical centers, and other healthcare facilities have an obligation to create plans that meet the specific and unique needs of their community.
We are an individualistic society, and while the pandemic shifts us toward a more pluralistic public health foundation for decision making, members of our society still want to know that their individual needs will be met, particularly by their community healthcare providers. For example, members of disabled groups report a decrease in access to care during pandemic related restrictions[i] and express concern that management plans may exacerbate discrimination against those with disabilities.[ii] Members of certain racial and ethnic groups have already been and continue to be disproportionately impacted by COVID-19.[iii] Additionally, many community members who feel alienated by government processes are more vulnerable to the economic and social downsides of stay-at-home orders and restrictions,[iv] and in some cases, they face counter-protests from healthcare workers exacerbating the divide.[v] Transparency and representation in decision making foster trust. An organized opportunity to engage in discourse allows all to consider multiple points of view.
A main tenet of an ethically appropriate response to a pandemic, broadly or at the hospital or community level, is a shift from prioritizing individualized care to public health needs.[vi] Some individuals are being asked to sacrifice for the good of everyone. Their less pressing medical needs may be temporarily put on hold while the crisis consumes more healthcare resources. As healthcare providers, our goal is to do “for” patients, rather than to do “to” patients. Healthcare institutions should incorporate the perspectives, goals, and recommendations of multidisciplinary staff and community members and consider all potential hardships to create policies that encourage public health goals. In developing policies, organizations, hospital systems, and the government may overlook special considerations of marginalized communities if those communities are not brought into the discussion.
Hospitals must try to find a member or members of a marginalized group who can truly represent the group and its interests. It is both presumptive and discriminatory to suggest that a member of any one group is willing and able to speak for that entire group. The goal, creation of a diverse decision-making group, can be met by engaging diverse interprofessional staff, the institution’s diversity department, the institution’s patient advisory group, local social justice groups, and other community leaders to identify appropriate representatives of marginalized groups. Hospital planning leaders should invite representatives to planning meetings and seek their input through forums and questionnaires that ensure their voices are heard and respected.
One of the goals of ethical discussions is to create “moral spaces” where ethicists facilitate discussion and reflection and foster broader and deeper ethical discussions.[vii] To create an ideal moral space, the goal should be discussion rather than debate. People will not always agree with each other, but they can seek to understand each other opening the possibility of consensus in important policies. The goal of pandemic management discussions should be understanding others and coming together to meet the needs of the public in an equitable and non-discriminatory way. All participants should be empowered to share their views and know that those views will be respected, they belong in the meeting, and can truly influence the outcome. Institutions must include voices of marginalized groups in final decisions. This is particularly relevant at the community level where members of marginalized groups are our co-workers, family, friends, and neighbors.
Society’s response to the pandemic provides insights into inequity within our healthcare structure and highlights community concerns about public health responses. At the local level, there is an opportunity to shift toward more inclusive public health policies creating a more fair and well-accepted system and improving outcomes. By reaching out to the broader community as well as including diverse health professionals from within the hospital system, local healthcare facilities are well positioned to create meaningful change ensuring that marginalized groups drive the policies that affect them.
Photo credit Benjamin Child on Unsplash
[i] Abigail Abrams, “’This is Really Life or Death.’ For People With Disabilities, Coronavirus Is Making It Harder Than Ever to Receive Care,” Time, April 24, 2020, retrieved from https://time.com/5826098/coronavirus-people-with-disabilities/
[ii] Stephanie Collins and Jane Buchanan, “US Disability Groups Push for Equality in Covid-19 Response: Successful Challenge to Discriminatory Language in Alabama’s Emergency Care Plans,” Human Rights Watch, April 22, 2020, retrieved from https://www.hrw.org/news/2020/04/22/us-disability-groups-push-equality-covid-19-response#
[iii] APM Research Lab Staff, “The Color of Coronavirus: COVID-19 Deaths by Race and Ethnicity in the U.S.,” APM Research Lab, April 28, 2020, retrieved from https://www.apmresearchlab.org/covid/deaths-by-race; Centers for Disease Control and Prevention (CDC), “Provisional Death Counts for Coronavirus Disease (COVID-19): Data Updates by Select Demographic and Geographic Characteristics,” National Center for Health Statistics, April 21, 2020, retrieved from https://www.cdc.gov/nchs/nvss/vsrr/covid_weekly/
[iv] Kirk Siegler, “Across America, Frustrated Protesters Rally to Reopen the Economy,” NPR, April 18, 2020, retrieved from https://www.npr.org/2020/04/18/837776218/across-america-frustrated-protesters-rally-to-reopen-the-economy
[vi] Douglas B. White, Mitchell H. Katz, John M. Luce, and Bernard Lo, “Who Should Receive Life Support During a Public Health Emergency? Using Ethical Principles to Improve Allocation Decisions,” Annals of Internal Medicine 150, no. 2 (2009): 132-138. doi:10.7326/0003-4819-150-2-200901200-00011
[vii] Margaret Urban Walker, “Keeping Moral Space Open: New Images of Ethics Consulting,” The Hastings Center Report 23, no. 2 (Mar-Apr, 1993): 33-40, doi:10.2307/3562818; Ann B. Hamric and Lucia D. Wocial, “Institutional Ethics Resources: Creating Moral Spaces,” The Hastings Center Report 46, no. S1 (2016): S22-S27, doi:10.1002/hast327