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Reclaiming patient-centered care from the grip of COVID-19
Over a year has passed since the first case of COVID-19 was reported in the United States, with over 114 million cases now reported worldwide, and over 2.5 million deaths at the time of this writing (Dong E, et al. Lancet Infect Dis. doi: 10.1016/S1473-3099[20]30120-1). While our vaccination efforts here in the United States have provided a much-needed glimmer of hope, it has been bittersweet, as we recently surpassed the grim milestone of 500,000 COVID-19-related deaths.
The infectious nature of SARS-CoV-2, coupled with the lack of adequate PPE early in the pandemic, led to radical changes in most hospital visitor policies. Rather than welcoming families into the care setting as we have been accustomed, we were forced to restrict access. While well-intentioned, the impact of this on patients, their families – and as we later learned, ourselves – has been devastating. Patients found themselves alone in an unfamiliar environment, infected with a disease there was no effective treatment for, hearing dismal news regarding inpatient and ICU mortality rates on news networks, and families could not see for themselves how their loved ones were progressing in their hospital course.
The impact on patient-centered care
The impact of this pandemic on patients and health care providers alike cannot be overstated. Arguably, one of the greatest challenges created by COVID-19 has been its direct assault on the core values of patient-centered care that we have spent decades striving to promote and embody.
Since its identification as a quality gap by the Institute of Medicine in 2001, the definition of patient-centered care has been tweaked over the past 20 years (Institute of Medicine (IOM). Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D.C: National Academy Press; 2001). Most frameworks include the active participation of patients and their families as part of the health care team, encouraging and facilitating the presence of family members in the care setting, and focusing on patients’ physical comfort and emotional well-being as fundamental tenets of patient centeredness (NEJM Catalyst: What is Patient-Centered Care? Explore the definition, benefits, and examples of patient-centered care. How does patient-centered care translate to new delivery models? January 1,2017).
Families, the “F” in the ABCDEF Bundle, have been recognized as an integral part of care in the ICU setting (Ely EW. Crit Care Med. 2017;45[2]:321). While engagement of family members began with our recognition of their role in emotionally supporting patients and efforts to improve communication, we have also seen the impact of family participation on reducing ICU delirium through frequent re-orientation and encouragement of early mobility (McKenzie J, et al. Australas J Ageing. 2020;39:21). In fact, a recent study has suggested that family members could play an even more active role in detecting and assessing ICU delirium using objective assessment tools (Fiest K, et al. Crit Care Med. 2020;48[7]:954). Post-ICU PTSD has been well described in both ICU survivors as well as in their family members, with evidence that family participation in care of patients during their ICU stay leads to its reduction (Amass TH, et al. Crit Care Med. 2020[Feb];48[2]:176).
The emotional toll
Comforting patients and families in times of distress and suffering is something that comes naturally to many in critical care, and our training further improves our ability to do this effectively. No amount of training, however, could have prepared us for the degree and volume of suffering we bore witness to this past year and the resulting moral injury many are still dealing with. We were present for families’ most intimate moments, holding phones and tablets up to patients so their families could say their goodbyes, listening to the “I love yous,” “I’ll miss yous,” “I’m sorrys,” and “Please don’t gos.” Nurses held patients’ hands as they took their last breaths so they wouldn’t die alone and worked to move husbands and wives into the same room so they could be together in their final moments. Entrenched in each of our identities is the role of healer, and we found ourselves questioning our effectiveness in rising to meet suffering on a scale we had never seen before. Little did we understand that while our paradigms were reinforcing the benefits of patient-centered care for patients and their families, that framework was also serving to facilitate our role as healers – that without it, we all suffer.
Rising to the challenge
These unprecedented circumstances led to creative efforts to bridge some of these barriers. Health systems created photo lanyards that providers wore over their PPE so patients could identify their health care team and connect with them on a more human level. Video conferencing technology was brought to the patient bedside using smartphones and tablets to assist them in communicating with their families. Doctors and nurses coordinated multiple calls throughout the day to ensure families felt included in the care plans and were always abreast of any new developments.
All these initiatives were our way of attempting to alleviate some of the suffering we were witnessing, and in some ways felt complicit in. It is in hindsight that we can look back and question if we could have done things differently. We treated family as visitors, when in fact, they are fundamental members of the care team who play an active and critical role in patient care. This was, in part, driven by national unpreparedness when it came to PPE supplies, in addition to misinformation and inconsistent messaging early in the pandemic with regards to the mechanism of transmission of disease from various health organizations. While we did our best given the circumstances, we must not allow this experience to lead us away from the tenets we know to be essential to patient, family, and health care provider well-being.
All in health care met the call to action – nurses, physicians, advanced practice providers, respiratory therapists, nutritionists, pharmacists, physical therapists, patient transporters, environmental service workers, and all others who kept our hospitals and patient care facilities open through this pandemic and embarked on what amounted to a collective, global, ongoing “code-blue alert,” resuscitating patient after patient, hotspot after hotspot, region after region, and country after country. We expanded hospital bed capacities, created ICU beds where there were none, developed novel process protocols, and learned in real time what seemed to help (or not) in treating this novel disease, all while participating in incredible international scientific collaboration and information sharing that has contributed in getting the collective “us” through this first year of the pandemic. We did what we were trained and called to do.
Preparing for the future
There will inevitably be another public health crisis, and we must advocate for better preparedness next time, insisting on overall stronger public health systems and pandemic preparedness. We must address our PPE stores and supply chains. We must have disaster preparedness plans that go beyond the scope of mass casualty events and bioterrorism. Beyond physical recovery, we must tend to the factors that impact patients’ long-term recovery, with attention to emotional and psychological well-being. We must advocate for all of this now, while the memories are fresh and before the impact of this collective suffering begins to fade. It can never again be acceptable to exclude families from the health care setting. We must advocate for our patients and for the resources, systems, processes, and support that will allow us to do better.
Dr. Hegab is Associate Director, Pulmonary Hypertension Program, Medical Director, Pulmonary Embolism Response Team, Division of Pulmonary and Critical Care Medicine, Henry Ford Hospital; and Assistant Professor, Wayne State University School of Medicine, Detroit.
Over a year has passed since the first case of COVID-19 was reported in the United States, with over 114 million cases now reported worldwide, and over 2.5 million deaths at the time of this writing (Dong E, et al. Lancet Infect Dis. doi: 10.1016/S1473-3099[20]30120-1). While our vaccination efforts here in the United States have provided a much-needed glimmer of hope, it has been bittersweet, as we recently surpassed the grim milestone of 500,000 COVID-19-related deaths.
The infectious nature of SARS-CoV-2, coupled with the lack of adequate PPE early in the pandemic, led to radical changes in most hospital visitor policies. Rather than welcoming families into the care setting as we have been accustomed, we were forced to restrict access. While well-intentioned, the impact of this on patients, their families – and as we later learned, ourselves – has been devastating. Patients found themselves alone in an unfamiliar environment, infected with a disease there was no effective treatment for, hearing dismal news regarding inpatient and ICU mortality rates on news networks, and families could not see for themselves how their loved ones were progressing in their hospital course.
The impact on patient-centered care
The impact of this pandemic on patients and health care providers alike cannot be overstated. Arguably, one of the greatest challenges created by COVID-19 has been its direct assault on the core values of patient-centered care that we have spent decades striving to promote and embody.
Since its identification as a quality gap by the Institute of Medicine in 2001, the definition of patient-centered care has been tweaked over the past 20 years (Institute of Medicine (IOM). Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D.C: National Academy Press; 2001). Most frameworks include the active participation of patients and their families as part of the health care team, encouraging and facilitating the presence of family members in the care setting, and focusing on patients’ physical comfort and emotional well-being as fundamental tenets of patient centeredness (NEJM Catalyst: What is Patient-Centered Care? Explore the definition, benefits, and examples of patient-centered care. How does patient-centered care translate to new delivery models? January 1,2017).
Families, the “F” in the ABCDEF Bundle, have been recognized as an integral part of care in the ICU setting (Ely EW. Crit Care Med. 2017;45[2]:321). While engagement of family members began with our recognition of their role in emotionally supporting patients and efforts to improve communication, we have also seen the impact of family participation on reducing ICU delirium through frequent re-orientation and encouragement of early mobility (McKenzie J, et al. Australas J Ageing. 2020;39:21). In fact, a recent study has suggested that family members could play an even more active role in detecting and assessing ICU delirium using objective assessment tools (Fiest K, et al. Crit Care Med. 2020;48[7]:954). Post-ICU PTSD has been well described in both ICU survivors as well as in their family members, with evidence that family participation in care of patients during their ICU stay leads to its reduction (Amass TH, et al. Crit Care Med. 2020[Feb];48[2]:176).
The emotional toll
Comforting patients and families in times of distress and suffering is something that comes naturally to many in critical care, and our training further improves our ability to do this effectively. No amount of training, however, could have prepared us for the degree and volume of suffering we bore witness to this past year and the resulting moral injury many are still dealing with. We were present for families’ most intimate moments, holding phones and tablets up to patients so their families could say their goodbyes, listening to the “I love yous,” “I’ll miss yous,” “I’m sorrys,” and “Please don’t gos.” Nurses held patients’ hands as they took their last breaths so they wouldn’t die alone and worked to move husbands and wives into the same room so they could be together in their final moments. Entrenched in each of our identities is the role of healer, and we found ourselves questioning our effectiveness in rising to meet suffering on a scale we had never seen before. Little did we understand that while our paradigms were reinforcing the benefits of patient-centered care for patients and their families, that framework was also serving to facilitate our role as healers – that without it, we all suffer.
Rising to the challenge
These unprecedented circumstances led to creative efforts to bridge some of these barriers. Health systems created photo lanyards that providers wore over their PPE so patients could identify their health care team and connect with them on a more human level. Video conferencing technology was brought to the patient bedside using smartphones and tablets to assist them in communicating with their families. Doctors and nurses coordinated multiple calls throughout the day to ensure families felt included in the care plans and were always abreast of any new developments.
All these initiatives were our way of attempting to alleviate some of the suffering we were witnessing, and in some ways felt complicit in. It is in hindsight that we can look back and question if we could have done things differently. We treated family as visitors, when in fact, they are fundamental members of the care team who play an active and critical role in patient care. This was, in part, driven by national unpreparedness when it came to PPE supplies, in addition to misinformation and inconsistent messaging early in the pandemic with regards to the mechanism of transmission of disease from various health organizations. While we did our best given the circumstances, we must not allow this experience to lead us away from the tenets we know to be essential to patient, family, and health care provider well-being.
All in health care met the call to action – nurses, physicians, advanced practice providers, respiratory therapists, nutritionists, pharmacists, physical therapists, patient transporters, environmental service workers, and all others who kept our hospitals and patient care facilities open through this pandemic and embarked on what amounted to a collective, global, ongoing “code-blue alert,” resuscitating patient after patient, hotspot after hotspot, region after region, and country after country. We expanded hospital bed capacities, created ICU beds where there were none, developed novel process protocols, and learned in real time what seemed to help (or not) in treating this novel disease, all while participating in incredible international scientific collaboration and information sharing that has contributed in getting the collective “us” through this first year of the pandemic. We did what we were trained and called to do.
Preparing for the future
There will inevitably be another public health crisis, and we must advocate for better preparedness next time, insisting on overall stronger public health systems and pandemic preparedness. We must address our PPE stores and supply chains. We must have disaster preparedness plans that go beyond the scope of mass casualty events and bioterrorism. Beyond physical recovery, we must tend to the factors that impact patients’ long-term recovery, with attention to emotional and psychological well-being. We must advocate for all of this now, while the memories are fresh and before the impact of this collective suffering begins to fade. It can never again be acceptable to exclude families from the health care setting. We must advocate for our patients and for the resources, systems, processes, and support that will allow us to do better.
Dr. Hegab is Associate Director, Pulmonary Hypertension Program, Medical Director, Pulmonary Embolism Response Team, Division of Pulmonary and Critical Care Medicine, Henry Ford Hospital; and Assistant Professor, Wayne State University School of Medicine, Detroit.
Over a year has passed since the first case of COVID-19 was reported in the United States, with over 114 million cases now reported worldwide, and over 2.5 million deaths at the time of this writing (Dong E, et al. Lancet Infect Dis. doi: 10.1016/S1473-3099[20]30120-1). While our vaccination efforts here in the United States have provided a much-needed glimmer of hope, it has been bittersweet, as we recently surpassed the grim milestone of 500,000 COVID-19-related deaths.
The infectious nature of SARS-CoV-2, coupled with the lack of adequate PPE early in the pandemic, led to radical changes in most hospital visitor policies. Rather than welcoming families into the care setting as we have been accustomed, we were forced to restrict access. While well-intentioned, the impact of this on patients, their families – and as we later learned, ourselves – has been devastating. Patients found themselves alone in an unfamiliar environment, infected with a disease there was no effective treatment for, hearing dismal news regarding inpatient and ICU mortality rates on news networks, and families could not see for themselves how their loved ones were progressing in their hospital course.
The impact on patient-centered care
The impact of this pandemic on patients and health care providers alike cannot be overstated. Arguably, one of the greatest challenges created by COVID-19 has been its direct assault on the core values of patient-centered care that we have spent decades striving to promote and embody.
Since its identification as a quality gap by the Institute of Medicine in 2001, the definition of patient-centered care has been tweaked over the past 20 years (Institute of Medicine (IOM). Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D.C: National Academy Press; 2001). Most frameworks include the active participation of patients and their families as part of the health care team, encouraging and facilitating the presence of family members in the care setting, and focusing on patients’ physical comfort and emotional well-being as fundamental tenets of patient centeredness (NEJM Catalyst: What is Patient-Centered Care? Explore the definition, benefits, and examples of patient-centered care. How does patient-centered care translate to new delivery models? January 1,2017).
Families, the “F” in the ABCDEF Bundle, have been recognized as an integral part of care in the ICU setting (Ely EW. Crit Care Med. 2017;45[2]:321). While engagement of family members began with our recognition of their role in emotionally supporting patients and efforts to improve communication, we have also seen the impact of family participation on reducing ICU delirium through frequent re-orientation and encouragement of early mobility (McKenzie J, et al. Australas J Ageing. 2020;39:21). In fact, a recent study has suggested that family members could play an even more active role in detecting and assessing ICU delirium using objective assessment tools (Fiest K, et al. Crit Care Med. 2020;48[7]:954). Post-ICU PTSD has been well described in both ICU survivors as well as in their family members, with evidence that family participation in care of patients during their ICU stay leads to its reduction (Amass TH, et al. Crit Care Med. 2020[Feb];48[2]:176).
The emotional toll
Comforting patients and families in times of distress and suffering is something that comes naturally to many in critical care, and our training further improves our ability to do this effectively. No amount of training, however, could have prepared us for the degree and volume of suffering we bore witness to this past year and the resulting moral injury many are still dealing with. We were present for families’ most intimate moments, holding phones and tablets up to patients so their families could say their goodbyes, listening to the “I love yous,” “I’ll miss yous,” “I’m sorrys,” and “Please don’t gos.” Nurses held patients’ hands as they took their last breaths so they wouldn’t die alone and worked to move husbands and wives into the same room so they could be together in their final moments. Entrenched in each of our identities is the role of healer, and we found ourselves questioning our effectiveness in rising to meet suffering on a scale we had never seen before. Little did we understand that while our paradigms were reinforcing the benefits of patient-centered care for patients and their families, that framework was also serving to facilitate our role as healers – that without it, we all suffer.
Rising to the challenge
These unprecedented circumstances led to creative efforts to bridge some of these barriers. Health systems created photo lanyards that providers wore over their PPE so patients could identify their health care team and connect with them on a more human level. Video conferencing technology was brought to the patient bedside using smartphones and tablets to assist them in communicating with their families. Doctors and nurses coordinated multiple calls throughout the day to ensure families felt included in the care plans and were always abreast of any new developments.
All these initiatives were our way of attempting to alleviate some of the suffering we were witnessing, and in some ways felt complicit in. It is in hindsight that we can look back and question if we could have done things differently. We treated family as visitors, when in fact, they are fundamental members of the care team who play an active and critical role in patient care. This was, in part, driven by national unpreparedness when it came to PPE supplies, in addition to misinformation and inconsistent messaging early in the pandemic with regards to the mechanism of transmission of disease from various health organizations. While we did our best given the circumstances, we must not allow this experience to lead us away from the tenets we know to be essential to patient, family, and health care provider well-being.
All in health care met the call to action – nurses, physicians, advanced practice providers, respiratory therapists, nutritionists, pharmacists, physical therapists, patient transporters, environmental service workers, and all others who kept our hospitals and patient care facilities open through this pandemic and embarked on what amounted to a collective, global, ongoing “code-blue alert,” resuscitating patient after patient, hotspot after hotspot, region after region, and country after country. We expanded hospital bed capacities, created ICU beds where there were none, developed novel process protocols, and learned in real time what seemed to help (or not) in treating this novel disease, all while participating in incredible international scientific collaboration and information sharing that has contributed in getting the collective “us” through this first year of the pandemic. We did what we were trained and called to do.
Preparing for the future
There will inevitably be another public health crisis, and we must advocate for better preparedness next time, insisting on overall stronger public health systems and pandemic preparedness. We must address our PPE stores and supply chains. We must have disaster preparedness plans that go beyond the scope of mass casualty events and bioterrorism. Beyond physical recovery, we must tend to the factors that impact patients’ long-term recovery, with attention to emotional and psychological well-being. We must advocate for all of this now, while the memories are fresh and before the impact of this collective suffering begins to fade. It can never again be acceptable to exclude families from the health care setting. We must advocate for our patients and for the resources, systems, processes, and support that will allow us to do better.
Dr. Hegab is Associate Director, Pulmonary Hypertension Program, Medical Director, Pulmonary Embolism Response Team, Division of Pulmonary and Critical Care Medicine, Henry Ford Hospital; and Assistant Professor, Wayne State University School of Medicine, Detroit.
