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NCPD Article

Care Delivery and Treatment Decision Making: Bioethical and Nursing Considerations During and After the COVID-19 Pandemic

Joseph D. Tariman
Craig M. Klugman
Kashica J. Webber-Ritchey
Kim Siarkowski Amer
CJON 2021, 25(1), 61-68 DOI: 10.1188/21.CJON.61-68

Background: The disruption in the supply chain of resources and interruptions in cancer treatments caused by the pandemic presented tremendous challenges to the healthcare system.

Objectives: This article describes the National Academy of Medicine–defined states of medical and nursing care delivery for which local plans should be drawn and the shifting and evolving systems framework that can guide decisions to optimize the crisis standards of care.

Methods: A case study is presented to describe the process of shifting the state of medical and nursing care delivery and bioethical nursing considerations during the pandemic and beyond.

Findings: An evolving and shifting systems framework for crises rooted in deontology, principlism, and the ethics of care model provide meaningful guidance for establishing priorities for patient care.

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The following case is a depiction of a hypothetical sequence of scenarios that have been developed by the authors based on anecdotal stories shared by oncology nurses and nurse practitioners who were at the front line, simultaneously treating the deadly coronavirus and the various cancers that also threaten the lives of their patients. The scenarios were thoughtfully framed and critically examined to depict a real-life case situation if a crisis like the COVID-19 pandemic continued to soar unabated, reaching the contingency level of a crisis.

C.J. is a 75-year-old Latino man who presented to a suburban emergency department (ED) in the northwestern region of Illinois about 30 miles from Chicago for acute, severe lumbar-sacral pain. The computerized tomographic imaging studies revealed multilevel compression fractures at L3 and S1 with innumerable lytic lesions in the thoracic and lumbosacral vertebrae. His laboratory blood tests showed mild anemia with hemoglobin at 11 mg/dl and mild renal insufficiency with serum creatinine of 1.4 g/dl. While at the ED, his nephrology workup showed monoclonal IgG kappa protein in the immunofixation tests with a corresponding monoclonal spike (M spike) of 4.7 g/dl in the serum protein electrophoresis. The 24-hour urine protein electrophoresis showed 2,100 mg per 24 hours of monoclonal lambda light chain or Bence–Jones proteinuria. C.J. was sent home after the completion of a nephrology consultation and workup, and he was referred to a local hematologist in one week to complete a diagnostic workup for possible diagnosis of multiple myeloma (MM).

A local hematologist evaluated him, and additional tests were performed. They showed a 104 mg/L (0.26–1.65 normal reference range) kappa-lambda free light chains ratio with a normal glomerular filtration rate of 72 (Schmidt-Hieltjes et al., 2016). His unilateral bone marrow biopsy showed 60% kappa-restricted plasma cells consistent with the diagnosis of MM. Genomic expression analysis of bone marrow–derived MM cells showed high-risk MM disease features such as 1q deletion, 17p deletions, chromosome 13 deletion, and translocation in chromosomes 4–14 (t4:14). The plasma cell labeling index was 3. C.J. was diagnosed with symptomatic MM, International Staging System stage II (Palumbo et al., 2015), with high-risk genetic-based classification requiring immediate therapy. C.J.’s MM diagnosis was confirmed and conveyed to him by his hematologist about a month before the emergence of the COVID-19 pandemic in the United States, caused by the novel coronavirus, SARS-CoV-2 (Liu et al., 2020).

The plan for the initial therapy of a relatively healthy, non-frail 75-year-old patient with no severe comorbidity would typically include six-month induction therapy consisting of bortezomib, lenalidomide, and dexamethasone triplet combination therapy (Paner et al., 2018) to be followed with lenalidomide and dexamethasone maintenance therapy. C.J., a widower who lived alone, moved from his suburban home to his brother’s home about six miles away from the city of Chicago to receive MM therapy at an outpatient infusion clinic of a local community hospital that accepts patients with Medicaid-only insurance. During the fourth month of his MM therapy, the community outpatient infusion clinic began to experience shortages of personal protective equipment (PPE) and bortezomib to cover the scheduled treatments of patients needing bortezomib therapy for MM or non-Hodgkin lymphoma. C.J.’s myeloma tumor markers showed he was in a very good partial remission with more than 90% reduction of his baseline M spike and return of his kidney function to normal level.

The shortages were the result of the burden on the healthcare system from treating patients with COVID-19 for the previous three months. Leaders within the local hospital’s outpatient clinic called for a bioethics committee meeting to seek guidance on how to manage future patients with cancer during a pandemic crisis when medication and PPE are in short supply because of the disruptions in the supply chains brought on by the COVID-19 pandemic (Flaatten et al., 2020). The primary question the bioethics committee needed to answer in this scenario was in regard to prioritization of care and treatment between patients with cancer and complications requiring immediate therapy, like C.J., versus patients with COVID-19, which both are potentially fatal conditions without timely care and treatment.

Bioethical Considerations

In 2013, the National Academies of Sciences, Engineering, and Medicine, formerly known as the Institute of Medicine, implemented a toolkit on how to develop an action framework for crisis standards of care (Hanfling et al., 2012). The National Academies defined three states of medical and nursing care delivery—conventional, contingent, and crisis—for which local plans should be drawn. Conventional delivery of care is the everyday mode in which hospital beds are available for individuals in the community and there are ample resources for patients who need them. In this scenario, C.J. would receive his MM induction therapy as an inpatient only if his renal insufficiency got worse while being treated in the hospital’s outpatient infusion center. In contingent mode, the community knows that the disaster is coming and can prepare for it. For example, when COVID-19 case counts within the United States started rising in March 2020, many hospitals started postponing elective surgeries (Sathya, 2020). During this time, plenty of resources were available for treatment, but to prepare for the impending surge in cases, patient care services were limited. Postponing surgeries or maintenance therapies for patients with cancer in remission meant that valuable PPE was not being used; patients would not be in recovery (e.g., making such spaces available to convert to additional intensive care unit beds), drugs would be available, and the medical and nursing staff were available to treat patients with COVID-19.

“‘Crisis standards of care’ is defined as a substantial change in usual healthcare operations and the level of care it is possible to deliver, which is made necessary by a pervasive (e.g., pandemic influenza) or catastrophic (e.g., earthquake, hurricane) disaster” (Committee on Guidance for Establishing Standards of Care for Use in Disaster Situations, 2009, p. 3). In other words, a crisis is when the healthcare system exceeds its capacity to treat patients, such as limited hospital beds, personnel, and other resources, and the emergency medical services system is under distress (Altevogt et al., 2009).

As shown in Figure 1, each stage requires a different ethical framework to be adopted in making healthcare decisions. In conventional times, bioethics defaults to an individual-based approach. Decision making centers on ethical theories such as deontology (family of theories that say what is “right” is following a set of universal standards or rules) and principlism (a set of four guidelines to moral decision making: autonomy, beneficence, nonmaleficence, and justice). Among the goals of healthcare workers are providing care for their patients, maximizing autonomy to patients, and advocating for those in need of care to ensure accessibility to warranted healthcare services. This first stage is the ethics in which nursing students are trained and in which nurses regularly practice their craft. Here is where C.J. would receive his first four months of planned induction chemotherapy to reduce the MM tumor burden rapidly.

Shifting to contingency means moving from a full individual-based decision model to one that thinks more about the needs of others. For example, physical distancing efforts may have a negative effect on the blood donation numbers in a region (Schnell, 2020). If a patient with cancer developed severe anemia with a hemoglobin of 6.5 g/dl post–chemotherapy infusion, will blood also be available for a motor vehicle accident victim or someone who contracts the coronavirus? Are the nurses covering such patients unavailable to help in other areas where patients with COVID-19 may be? A decision regarding treating a single patient has implications around what resources this one patient may need and consume (e.g., tubing, medications, ventilators, PPE, staff time), which may not be available in a crisis. In contingency, one operates from an ethics of care model (i.e., caring and nurturing for others), which is the philosophy most commonly used in nursing. However, in this case, the emphasis is not just on caring for a single patient but also on caring for future patients who may be admitted during the pandemic. In the case scenario, C.J.’s last two remaining months of induction therapy will be critically discussed by the interprofessional team, which includes a bioethicist. When an anticipated surge is imminent, the following are questions that the interprofessional care team needs to answer:

•  What are the implications of C.J.’s remaining two months of chemotherapy in terms of resources, such as limited availability of appointments in the infusion clinic because of social distancing measures and limits on the number of patients and caregivers simultaneously inside the infusion suite in a given time?

•  Is caring for future patients going to be hindered by the resources that he may need and consume during his chemotherapy, particularly in a clinic setting where the resources are scarce, and while still bearing the brunt of unprecedented logistical and financial stresses brought on by the COVID-19 pandemic?

When the point of crisis is reached, decision making moves from focusing on the individual to a more communitarian approach: What benefits the overall population? This stage is when bedside and clinic nurses need to take a public health ethics approach—if a patient gets a resource, then 10 others do not get it. In public health ethics, the focus is on solidarity that consists of reducing morbidity and mortality for a population (e.g., the maximization of the number of lives saved, the number of years of life saved, the quality of lives saved) and efficacy based on the scientific likelihood of success (Goldberg & Klugman, 2016). For bedside nurses, the importance of ethical decision making during a crisis is that decisions are made for a population, not just a single patient. To maximize lives saved may mean withholding aggressive treatment from individual patients; the good of the group outweighs that of the single patient. In addition, decision-making powers change; decisions that may be made by a healthcare worker in conventional times may require interprofessional team decision making during the crisis to ensure that the best communal choices are being thoughtfully made. The maintenance therapy for C.J. would have started on the seventh month of his planned chemotherapy and would have fallen under crisis. His maintenance therapy would have included a once-a-month clinic infusion appointment for bortezomib subcutaneous injection and weekly laboratory appointments to check his blood counts while he was taking the daily dose of lenalidomide at 15 mg once a day on days 1–14 every 28-day cycle. These appointments that require human and logistic resources would have been canceled to prioritize future patients who may require induction chemotherapies that could save more patients’ lives throughout the pandemic.

The move from conventional to contingent to crisis ethics is not a linear progression. In the event of a natural disaster, such as an earthquake, there is an instant move from conventional to crisis, but the crisis is often limited in time and geographic space. Resources from other areas are brought in to allow a return to conventional care quickly. The COVID-19 pandemic is different in that it is hitting most of the globe at once, that it will be around for a substantial amount of time (i.e., years, not days or hours), and supply chains for PPE, medications, and medical supplies have broken, suggesting that relief may not arrive at all.

For oncology practice, this ethical framework means thinking about what essential care is. Because patients without COVID-19 were excluded from medical settings, patients were unable to get their chemotherapy, radiation therapy, and surgical cancer treatments. In some cases, oral medications to be taken at home could be substituted. In other cases, patients were asked to forgo treatment, which is unthinkable under conventional ethics. The result is a bevy of patients with cancer who are receiving suboptimal and delayed care (Cooney, 2020). Patients with cancer are sacrificing their immediate needs for the benefit of the broader population.

In oncology nursing, addressing the holistic needs of patients is a priority while focusing on their physical well-being. For example, for a patient with cancer who is triaged not to have access to treatment, nurses ensure that the patient at least has comfort measures and palliative care. Although the focus moves from the individual patient to the population, the needs of the individual patient are not abandoned.

Although the worst-case surge scenario did not occur in spring 2020, the winter holidays have led to an unprecedented level of infectious disease and death in the United States (Centers for Disease Control and Prevention, 2021). In C.J.’s case, his treatment plan would have been interrupted if the surge had occurred during his treatment. In such conditions, oncology nurses are well positioned to provide patient and caregiver education on the shift of priorities and its potential to save more lives among patients with COVID-19. Oncology nurses can help allay patients’ fear of early cancer recurrence by ensuring that tumor marker monitoring is still scheduled and reassuring patients that they will not be abandoned.

Higher Incidence of COVID-19 in Vulnerable Populations

As has been the case with other infectious disease epidemics, vulnerable populations are bearing the brunt of COVID-19 (Wilson, 2020) and are being disproportionately affected (Langford & Bateman-House, 2020). Vulnerable populations are defined as groups of people who are disproportionately at risk for poor health (Aday, 2001; Lancet, 2020). Vulnerability can be multidimensional, with several characteristics contributing to one’s vulnerability, as outlined in Figure 2 (Havrilla, 2017).

In the presence of COVID-19, vulnerable populations continue to grow, further limiting resources (Kantamneni, 2020; Lancet, 2020). Within the United States, there has been a significant spike in unemployment (Kantamneni, 2020). The number of individuals with a lack of health insurance coverage has increased as a result of higher unemployment rates (Wilson, 2020). African Americans in Chicago have a COVID-19 death rate that is seven times higher than any other demographic, and the Hispanic community has seen a surge in COVID-19 cases (Vital Strategies, 2020). Individuals of Black and Brown communities are essential workers, earning low wages, and are not able to stay home from work, which puts them on the COVID-19 front lines and significantly exposes them to COVID-19 (Centers for Disease Control and Prevention, 2020a, 2020b). Unfortunately, adhering to measures on decreasing transmission of COVID-19, such as social distancing, proper hand washing, staying home from work if feeling ill, and avoiding close contact with people who are sick, are challenges for vulnerable, marginalized populations. In addition, racial/minority groups are already suffering from non–COVID-19 medical conditions at rates higher than the general population, such as cardiovascular diseases, cancer, diabetes, and asthma, increasing their risk of COVID-19. For example, African Americans have higher death rates for some types of cancer, such as breast, cervical, and prostate (National Cancer Institute, 2020). African American women are more likely to die of breast and cervical cancer when compared to White women, whereas African American men are twice as likely to die of prostate cancer when compared to White men (National Cancer Institute, 2020).

With patients with cancer being more vulnerable during this time (Dai et al., 2020), acknowledging the barriers to quality oncology care is recommended. Changes in healthcare accessibility, policy, and research are required to improve the quality of oncology care among vulnerable populations (MacKenzie & Parker, 2015). During the next 10 years, cancer-related deaths are expected to increase because COVID-19 is delaying the diagnosis and treatment of cancerous tumors (Cooney, 2020) and resources are scarce (Marron et al., 2020). The pandemic highlights the urgent need to address health disparities (Vital Strategies, 2020), particularly as it relates to cancer in vulnerable populations.

COVID-19 clinical trial research is needed to determine the efficacy of treatment options for vulnerable populations. However, those who are being affected most by COVID-19 are the same groups of individuals who have been historically absent or underrepresented in clinical trial research (Langford & Bateman-House, 2020). How will the efficacy of COVID-19 treatment options be determined in the absence of research participants from Black and Brown communities? With this pandemic, research work from various disciplines has been halted. As a result of enrollment issues, researchers are faced with many challenges (Cooney, 2020). During the COVID-19 pandemic, cancer clinical trials are needed and should resume. Biomedical research should be safely conducted with the inclusion of vulnerable populations, following basic research principles of research ethics (World Health Organization, 2020; Xafis, 2020). Researchers will need to be creative in researching which data collection for clinical trials can be completed online or via telephone (Cooney, 2020) to decrease face-to-face interactions.

In light of health disparities and health inequality among vulnerable populations related to ensuring quality oncology care, the field of bioethics has not adequately addressed how to meet these patients’ needs. Preserving the integrity of vulnerable individuals, strengthening their fundamental rights (i.e., human dignity and human rights), and respecting their specific needs and life history are the responsibility of all health professionals (de Morais & Monteiro, 2017). In addition, failure to protect these individuals will lead to poorer health outcomes and more deaths. Figure 3 provides some strategies to aid in protecting this vulnerable group, which will be useful in better meeting their needs in future emergencies (Wynne et al., 2020).

Pandemic Preparation: Clinical Care

At the macro level, the unexpected shortages of medical and nursing personnel and healthcare resources, such as PPE and ventilators, are stark reminders that local hospitals and clinics must put in place policies and procedures that ensure open communication to local, state, and national healthcare authorities for a well-coordinated allocation of manpower and patient care–related supplies during a crisis. The outpouring of support from various organizations donating supplies to resource-depleted hospitals because of the surge of COVID-19 cases is admirable but should not be the case in any future pandemic. Private and government agencies must collaborate, and every hospital or clinic must identify one central communication center in every major city or county in the United States. These central communication centers should conduct routine drills to determine strengths and weaknesses in their processes for coordinating all human and logistical resources before the next pandemic. Chopra et al. (2020) outlined five areas that must be addressed by hospital policies and procedures to prepare for a pandemic. They are as follows:

•  Strategy for patient management according to volume and complexity

•  Essential components of a hospital preparedness plan for a pandemic

•  Protection and support for healthcare workers on the front line

•  Strategy for allocation of resources

•  Establishment of a robust, transparent, and open communication policy

Many professional oncology and hematology societies issued guidelines on the management of patients with cancer during the pandemic. Some are calling for redefinitions of diagnostic and treatment algorithms based on fair and ethical prioritization based on expert clinical judgment on decisions that would save as many lives as possible (Vecchione et al., 2020; Weinkove et al,. 2020). Others call for personalized risk–benefit ratio adaptation or individualized decisions based on disease features (Di Ciaccio et al., 2020; Terpos et al., 2020; Viale et al., 2020).

Implications for Nursing

During a pandemic or global threat, oncology nurses can use evidence-based principles to lead ethics discussions and can continue to be in conversations about the ethical and moral context of healthcare delivery. Oncology nurse leaders (both formal and informal) can lead effectively during a pandemic, using evidence-based innovation leadership principles. Those principles can include multimodal communication strategies and awareness of new developments relayed by nursing organizations and institutional and government publications. Nurses can maximize their leadership presence, practice empathy, create avenues to share new ideas, and care for oneself and the team (Raderstorf et al., 2020).

Oncology nurses can participate in bioethics committee meetings. If nursing representation is absent on the bioethics committee, nurses can seek seats at the table among the decision makers. Oncology nurses can ensure holistic management of patients and advocate on behalf of disadvantaged vulnerable patient populations. Oncology nurse managers and leaders are experts in nursing and auxiliary staffing and can provide critical input to staff specialty areas like oncology and stem cell transplantation units (Paterson et al., 2020).

Conclusion

Oncology nurses and all nurses need to be committed to advocating for patients. Advocacy should include more than the immediate environment of the hospital and clinic. Nurses should be aware of global threats to the health of their patients. Being aware of potential shortfalls of equipment or treatments can develop nursing advocacy on an institutional or governmental level. Nurses need to focus attention on current news developments, nursing organization publications, and global health concerns.

About the Author(s)

Joseph D. Tariman, PhD, APN, ANP-BC, FAAN, is an associate professor and the nursing associate director for the DNP program in the School of Nursing in the College of Science and Health, Craig M. Klugman, PhD, is a professor of bioethics in the Department of Health Sciences, and Kashica J. Webber-Ritchey, PhD, MHA, RN, is an assistant professor and Kim Siarkowski Amer, PhD, RN, is an associate professor, both in the School of Nursing, all at DePaul University in Chicago, IL. The authors take full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Tariman can be reached at phdinseattle@gmail.com, with copy to CJONEditor@ons.org. (Submitted July 2020. Accepted October 22, 2020.)

 

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