Prevalence, causes, and consequences of moral distress in healthcare providers caring for people living with dementia in long-term care during a pandemic

Abstract

Healthcare providers caring for people living with dementia may experience moral distress when faced with ethically challenging situations, such as the inability to provide care that is consistent with their values. The COVID-19 pandemic produced conditions in long-term care homes (hereafter referred to as ‘care homes’) that could potentially contribute to moral distress. We conducted an online survey to examine changes in moral distress during the pandemic, its contributing factors and correlates, and its impact on the well-being of care home staff. Survey participants (n = 227) working in care homes across Ontario, Canada were recruited through provincial care home organizations. Using a Bayesian approach, we examined the association between moral distress and staff demographics and roles, and characteristics of the long-term care home. We performed a qualitative analysis of the survey’s free-text responses. More than 80% of care home healthcare providers working with people with dementia reported an increase in moral distress since the start of the pandemic. There was no difference in the severity of distress by age, sex, role, or years of experience. The most common factors associated with moral distress were lack of activities and family visits, insufficient staffing and high turnover, and having to follow policies and procedures that were perceived to harm residents with dementia. At least two-thirds of respondents reported feelings of physical exhaustion, sadness/anxiety, frustration, powerlessness, and guilt due to the moral distress experienced during the pandemic. Respondents working in not-for-profit or municipal homes reported less sadness/anxiety and feelings of not wanting to go to work than those in for-profit homes. Front-line staff were more likely to report not wanting to work than those in management or administrative positions. Overall, we found that increases in moral distress during the pandemic negatively affected the well-being of healthcare providers in care homes, with preliminary evidence suggesting that individual and systemic factors may intensify the negative effect.

A descriptive study of the multidisciplinary healthcare experiences of inpatient resuscitation events

“…Additionally, years in the profession and patient’s length of stay did not correlate with moral distress. These findings are consistent with prior lack of association with moral distress, 26 but are in contrast to other findings associated with profession, age, and years of experience. 27 Because our multidisciplinary study did not stratify by profession due to small sample size, variation across professions may not have been evident.…”

“You treat what you have to treat, and you don’t care as much if they understand or if they feel good about it”: Communication barriers and perceptions of moral distress among doctors in emergency departments

“…[28] In accordance with the informants worry regarding making incorrect clinical judgements and assessments, previous research has found that dementia indeed is associated with decreased accuracy of the older patient presenting illness, [29] and that communication barriers pose risks for patients. [13,[15][16][17][18] Specifically for PLwD, whose ED visits are associated with adverse outcomes including functional decline, hospitalization, and mortality, [3,10,11,30,31] with one of the found reasons for adverse outcomes being communication barriers. [11] Indeed, PLwD are less likely to comprehend their discharge diagnosis and instructions.…”

“…[2] Language barriers and communication barriers are known to increase the risk for patients and cause an increased work burden and moral distress for the healthcare provider. [13,[15][16][17][18] Moral distress describes the feelings of unease that arise in situations when someone knows the morally correct action to take but is constrained in some way from taking this action. It is related to malpractice, reduced quality of care, and poor communication, negatively affecting the patient.…”

“…It is related to malpractice, reduced quality of care, and poor communication, negatively affecting the patient. [ 18 , 19 ] For doctors, moral distress is related to mental illness and decreased work motivation. [ 19 ] In a nationwide survey on moral distress among doctors in the United Kingdom during the Covid-19 pandemic, 59.6% reported having experienced moral distress prior to the pandemic.…”

Long‐term care facilities' response to the COVID‐19 pandemic: An international, cross‐sectional survey

“…Residents' social isolation, hopelessness and emotional exhaustion during the pandemic were frequently reported (Palacios‐Ceña et al, 2021; Smith et al, 2023). Among staff, increased workload and shortage, high burnout and exhaustion, fears of infection, stress, anxiety, panic disorders, depression and moral distress were prevalent (Haslam‐Larmer et al, 2022; Sarabia‐Cobo et al, 2021; White et al, 2021). The pandemic also limited resident–family connectedness, which negatively affected residents' and families' psychosocial and emotional well‐being (Palacios‐Ceña et al, 2021; Pirhonen et al, 2022; Salcedo‐Pérez‐Juana et al, 2022).…”