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Ethical Issues

The Moral Distress of Nurses When Patients Forgo Treatment Because of Cost

Olsen, Douglas P. PhD, RN; Keilman, Linda J. DNP, MSN, GNP-BC, FAANP

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AJN, American Journal of Nursing: September 2020 - Volume 120 - Issue 9 - p 61-66
doi: 10.1097/01.NAJ.0000697668.09031.71
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Figure
Figure:
Ricardo Seaeñez Jakuez stands outside the Denver Health building where he receives dialysis. In February 2019, Colorado changed its rules to expand its emergency Medicaid coverage, allowing undocumented immigrants to receive regular dialysis treatment. Prior to that, when things got bad, Seaeñez Jakuez could only get treatment in an ED. Photo by Kevin J. Beaty / Denverite / Colorado Public Radio.

Every day in the United States, nurses watch patients forgo beneficial treatment they cannot afford despite nursing's moral standard to treat patients without regard to financial condition. Nurses struggle to give suffering patients the best care possible within the constraints of a health care system that allocates much of health care as a consumer product instead of as a right. Patients who cannot afford the costs of care or insurance suffer needlessly; this is among the primary reasons that American nursing as a profession is often described as in a state of moral distress, as defined by Jameton: “Moral distress arises when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action.”1 The American Nurses Association (ANA) Code of Ethics for Nurses with Interpretive Statements is unambiguous: The nursing profession holds that health care is a “universal human right” (provision 8.1), and that nursing care should be given “according to need, setting aside any bias or prejudice” (provision 1.2) regarding personal attributes or life circumstances.2 This includes financial circumstances.

Moral inclination as well as the ANA Code of Ethics obligate nurses to provide care regardless of the patient's ability to pay; yet because many work in hospitals, nursing homes, and other facilities that withhold care without payment,3, 4 nurses are vulnerable to moral distress at the individual and collective professional level.

This article's purpose is not simply to identify yet another factor causing distress, moral or otherwise, in individual nurses, but to argue that the U.S. health care system places nurses, individually and collectively, in a catch-22 of moral compromise. While the literature offers nurses steps to cope with their experience of moral distress,5 the nurse's moral obligation to care for all patients in need cannot be satisfied in the current system. Systemic change is required—applying individual coping skills is not sufficient to address this source of moral distress. This article is an appeal to nurses and the nursing profession to use that distress to advocate for systematic change.

NURSES' DISTRESS

There are two compelling reasons for nurses to feel distressed about the lack of patient care due to patients' issues with cost. First, nurses feel concern for their patients and thus have a moral interest in their well-being; when this moral interest is stifled, they feel distress. Second, formalizing nurses' moral intuition to care, the ANA Code of Ethics does not support providing lesser care based on a patient's financial situation. Therefore, the unease and disquiet arising from this situation is a moral distress as felt by individual nurses and, because of its systemic nature, also experienced collectively by the profession.

Nurses care. Research confirms that people choose nursing as a career primarily as a way to help others6-9 and that helping continues to be a primary motivation for working nurses.10 While motivations for entering any profession have a strong practical element, past research on motivation for nursing as a career shows strong support among nurses for concepts of caring and nurturance, such as bringing relief or hope11 and having a “desire to help comfort others.”12 Potential nurses are often attracted by the intimate personal contact with those in need.

Research also shows that students who chose nursing as a career did so despite awareness of the profession's relatively low prestige.13, 14 Nursing is not an easy job. It combines demanding physical work, critical thinking and decision-making, and responsibility for the welfare of others, often in a fast-paced environment. Nurses work with toxic substances, bloodborne pathogens, and human waste. They are exposed to infectious diseases—as we've seen so vividly during the current pandemic—and workplace stress and violence, as well as psychosocial and spiritual challenges. Many nurses chose nursing as a profession with a core value of helping others, and in many U.S. hospitals and other facilities they find themselves stymied in carrying out that mission.

Nurses are affected when patients must forgo care. While moral distress related to patients forgoing care because of cost has not been widely discussed or studied, there are indications that nurses in the United States experience the discrepancy between the dictates of their personal and professional values and the realities of the health care system. Cervantes and colleagues interviewed clinicians who had intense sustained contact with patients receiving suboptimal care due to systemic constraints.15 The patients were undocumented immigrants with end-stage renal disease who were covered by Medicaid only for emergency dialysis—that is, meeting the criterion for “an emergent, life-threatening illness (such as high potassium level, electrocardiogram abnormalities, volume overload, or uremic symptoms).” The physicians and nurses in this study reported emotional exhaustion from witnessing needless suffering, as well as emotional detachment, a sense of lack of control, and physical exhaustion—all usually associated with moral distress.16 In addition, the researchers identified the theme of “moral distress from propagating injustice” in the clinicians' responses.

A qualitative study by Cabin described nurses' decision-making process in justifying Medicare applications for home care resource allocation for patients with Alzheimer's disease.17 Cabin states, “The nurses indicate client needs go unmet because they perceive Medicare does not allow or want care delivered to Alzheimer's disease and dementia patients receiving the Medicare home health benefit.” In the words of one nurse participant, “I was taught in nursing school to assess and treat the whole person. That's not how Medicare is structured.”

We are currently engaged in a study interviewing nurses about the experience of caring for patients who do not receive optimum care because of cost barriers. Preliminary analysis based on 20 interviews indicates that nurses do feel a moral burden related to their inability to provide the best care. In the words of one participant, “When they go home at the end of the day it's hard to think you did something worthwhile. . . . We need a health care system that takes care of people.”

Media reports of patients unable to afford care have recently provided striking illustrations of injustice resulting from health care costs. Examples include reports of patients taking extreme risks, some because of the cost of their insulin,18 and a patient told to try a GoFundMe account to raise funds to pay for lifesaving treatment.3

Patients forgoing treatment and the ANA Code. The ANA Code of Ethics states: “The need for and right to healthcare is universal, transcending all individual differences . . . nurses provide nursing services according to need, setting aside any bias or prejudice.”2 In the ANA's official explication of the code, Fowler states, “The directives are resolute and crystal clear: patient personal attributes, circumstances or life choices are never grounds for prejudice and may be used only to individualize care in accord with patient needs.”19 Poverty or other reasons for inability to pay for care fit the category of personal circumstances that should not influence the provision of nursing care.

It might be argued that inability to pay and receive beneficial care is simply one more circumstance that the nurse considers in planning care and is not constitutive of biased treatment of the patient. However, we can gain more insight into the ANA Code's intention that inability to pay should not incur bias by examining the history of the code. Earlier iterations specified patient characteristics that should not restrict nursing care, such as race and creed. “Economic status” was added to the version of the code issued in 2001. However, according to Fowler, in the 2015 version, specifications of various types of bias were dropped in favor of more comprehensive language so that no particular source of inappropriate prejudice was left out.19

The experience of moral distress can be destructive at the individual level. Since Jameton first identified the phenomenon, research has demonstrated multiple negative emotional, behavioral, physical, and spiritual effects on nurses that can have an impact on providing quality of care to patients, including depression, substance use, gastrointestinal disturbances, insomnia, and dampened moral sensitivity.16 Moral distress has been linked to burnout, compassion fatigue, nurse turnover, poor morale, ineffective teamwork, lower quality of care, and patient safety concerns.16, 20 Knowledge of these effects at the individual level points to an even more compelling concern regarding the cumulative effects on the entire profession, which finds its core vision of fairness at odds with the realities of the current system.

MORAL DISTRESS AND THE NEED FOR SYSTEM CHANGE

Nurses' advocacy for a system that would allow them to practice ethically and comply with a nursing code of ethics requiring optimum care to all, according to need and within available resources, is essential for two reasons:

  • Health care in the United States is extraordinarily expensive, creating financial burden for individual patients.
  • As a consequence of the personal expense of treatment, many Americans forgo health care, adversely influencing clinical outcomes.

The high cost of U.S. health care creates individual financial burden. Despite abundant evidence that health care in the United States is far more expensive than in other countries, effective cost control has proven challenging. It's been widely reported that health care prices continue to grow faster than prices of other services. These costs can be overwhelming even for patients with insurance coverage. The rate of increase in health care spending, while slowing in recent years, continues to outpace inflation and accounts for an increasing percentage of the gross domestic product. In 2018, over $11,000 was spent on health care for each person in the United States, 10% of which represented out-of-pocket spending.21 Out-of-pocket spending grew 2.8%, in keeping with a pattern of steady growth in recent years (see Figure 1).

Figure 1.
Figure 1.:
Per Capita Out-of-Pocket Expenditures, 1970-2018

The financial burden of medical care falls disproportionately on vulnerable populations. It is estimated that by 2035, older adults will spend one out of every seven dollars of retirement income on health care, a 40% increase from 2012.22 Young adults, even those with moderate incomes, also face difficulty paying medical costs.23 In addition, higher rates of financial barriers to paying medical bills were found among the poor and disabled, even when insured.24

Self-financing of both serious and chronic conditions is prohibitive for all but the extremely wealthy. Medical expenses are the most common cause of debt sent to collection agencies25 and according to GoFundMe.com, the site hosts over 250,000 medical campaigns each year from people seeking help with medical expenses. Further complicating matters for patients who are insured as well as those who lack insurance is that prices vary widely, often for no clear reason. Rosenthal and colleagues found that the cost of a total hip replacement, including hospital and physician charges, varied from $11,100 to $125,798 in a small sample of U.S. hospitals.26 Medical costs associated with diabetes are estimated to be $9,600 per year.27 According to the Alzheimer's Association, costs during the last five years of life for a person with dementia are about $287,000.28 Treatment for cancer, especially with newer chemotherapies, is extremely costly. The average cost of cancer treatment for a patient with insurance coverage in 2014 was $58,097 per year, up 19% from 2013.29 In 2014, the average annual financial responsibility of patients with coverage who received IV chemotherapy in a hospital was $7,040.29 Consider that the 2017 median household income in the United States was $61,372.30

Patients forgo beneficial treatment because of cost. Research confirms that patients do forgo and modify beneficial treatment because of financial considerations and that their health suffers as a result. Medication adherence is the most documented area for forgoing treatment because of cost. According to the Kaiser Family Foundation, 29% of all adults reported that, at some point in the past year, they chose not to take medications as prescribed, owing to their cost.31 A relationship between cost and nonadherence has been found in patients with cancer,32, 33 in patients with diabetes,34 among older adults,35 among adults younger than 65,36 and among the disabled.37 Poverty and lack of coverage have been consistently associated with cost-based nonadherence.36 Negative health effects, including higher mortality due to cost-related nonadherence, have been observed and widely reported in people with multiple conditions, among them diabetes34 and cardiovascular disease.38

CONFLICTING VALUES IN U.S. HEALTH CARE POLICY

Moral distress over care that's denied or modified because of cost is a reaction to a system of health care delivery that has two driving values that often conflict. While in some respects, society and public policy treat health care as a public good, in many others it's treated as a marketplace commodity available for a price. The Emergency Medical Treatment and Labor Act provides an example of how U.S. law actualizes this dichotomous perspective. Hospitals are required to provide ED patients with treatment to stabilize their condition regardless of ability to pay, thus treating health care as an essential public good. However, the hospital can discharge indigent patients after stabilization and pursue payment long into the future, treating health care much as consumer goods. In the United States, a person has a “right” to emergency care, at least, but is liable for the cost, much as if she or he had overspent on furniture. A medically “stable” but poor person who cannot show ability to pay may fail to secure life-preserving care, leading to a sense of failed moral obligation for the nurses concerned and a growing conviction among individual nurses and some nursing organizations and unions that the continuing rule of free market values in U.S. health care is the heart of the problem.39

RECOMMENDATIONS

To effect change, nurses first need to recognize the destructive effect of the current system on themselves, their patients, and society. Then there are three approaches to address the problem at each level: that of the individual nurse, the patient, and society. The nurse and patient levels constitute efforts to cope and adapt within the constraints of the current system, but with the recognition that the underlying problem will only be solved by changing social policy.

Self-care. Nothing can be accomplished at the systemic level if nurses do not stay healthy and resilient. The experience of moral distress debilitates nurses and adversely affects patient care. Nurses have an obligation under the ANA Code of Ethics, provision 5.2, “to promote and maintain their own health and well-being” in order to sustain optimum conditions for providing patient care.2 Measures that can build individual nurses' ability to maintain integrity under difficult conditions, or moral resilience, include individual ethics education, improving interprofessional communication, and addressing institutional moral climate.5, 16

Do what you can for patients within the current system. Despite the commodification of health care, there is considerable recognition as well that health is a foundational social good and that a variety of mechanisms for mitigating the effects of a market-based approach exist. Nurses can research and access institutional programs designed to assist indigent patients. Most pharmaceutical companies offer programs to assist eligible patients with costs for prescribed medications. In addition, numerous nonprofit organizations also assist with health care costs. One example is RIP Medical Debt (www.ripmedicaldebt.org), which targets the medical debt of patients by using donors' funds to pay the debt. While accessing such programs constitutes ethical action in relation to the individual patient, from a societal perspective these are stopgaps in a system that is fundamentally at odds with the aspirations of the ANA Code.

System change advocacy. Nurses have a tradition of identifying as patient advocates and have historically advocated for patients when social problems are the cause of their suffering. Nurses recognize that patients forgoing care because of cost is a moral problem. Therefore they have an obligation under the ANA Code of Ethics provision 9.1 to articulate and assert “shared values both within the profession and to the public,” and under provision 8.3 to “collaborate with others to change unjust structures and processes.”2 Advocacy includes staying informed, volunteering on hospital committees, attending town halls, and speaking with government and industry representatives. Continued documentation and research into the conditions leading to inequality and related patient suffering and nurses' moral distress will add to the power of nurse policy advocacy. In addition, nurses must educate themselves on specific policy solutions to the problem and work with their professional organizations, such as the ANA, as well as community and political organizations to speak out individually at every opportunity.

CONCLUSION

Moral distress felt by nurses compelled to practice in a system that forces the entire profession into a position of moral compromise is a symptom. The greater suffering is that of patients forgoing care and suffering the financial hardship caused by the way health care is allocated.

Society sanctions nurses to provide care and privileges nurses through licensure with the exclusive right to the title “nurse.” In return, the profession is responsible for ensuring that those granted this title are competent in a set of physical and cognitive skills that have distinct value to individual patients and society as a whole and that they apply those skills ethically. To fulfill the obligation, nursing has developed as a rigorous discipline. However, nursing can also be understood as a moral practice.40 Therefore, the discipline seeks knowledge to enact its morally derived central value: caring concern for the health of others.41 Nurses seek what is best for patients, not simply to alter physiology for its own sake. Society entrusts nursing with determining what constitutes the most effective, ethical care. Nurses have determined and affirmed that best ethical practice is giving optimum care regardless of financial status.2 The United Nations has likewise supported this value and expressed concern about the health care systems of countries that fall short.42, 43

Providing optimum care without regard to ability to pay is not the same as giving every individual the most expensive care possible. Instead, it means distributing health care resources by need within the limitations of what's available, not distributing limited resources by degree of wealth as is done with consumer goods and under the current health care system. When a resource is considered a public good, as health care is in many countries, and inequitable distribution harms some individuals, then the approach many would argue for is that distribution should be managed to optimize public benefit and not left to market forces alone.

The challenges are embedded within the health care delivery system and cannot be resolved by individual effort. Substantial changes in the system of health care distribution by reforming social policy are required. The concept that health care is a commodity is deeply ingrained in the U.S. health care system. Americans who generally value individual responsibility in solving personal problems find it easy to overlook lack of care because of inability to pay, often viewing it as a moral failing. Any systemic change will be difficult and may take many years of collective effort by nurses and many others.

Moral distress is associated with negative consequences for nurses, including depression, disgust, depersonalization, acting out, physical problems, and spiritual distress with loss of meaning, self-worth, and moral sensitivity.16 Nurses must contemplate the consequences when their entire profession suffers moral distress.

There are signs of hope. The previously cited study of clinicians giving only emergency dialysis to undocumented immigrants found that nurse participants were inspired by their experiences to engage in advocacy.15 It's possible that increasingly pervasive moral distress related to patients' ability to afford treatment may inspire many nurses to greater advocacy.

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