How Using the Term “Non-Compliant” Keeps Providers From Partnering With Patients

Mama Clara

Before she died, my neighbor, Mama Clara, an elderly African American woman, shared with me her concerns about her health-care provider reporting to her family that she was non-compliant with her medical regimen; she was deeply disturbed that they would think of her as disobedient. Mama Clara was a dedicated and loving woman who always tended to the needs of her children, grandchildren, and loved ones, sometimes at the price of her own physical health. She experienced her bliss and what she saw as “God’s intention” through caring for her family. So, when she missed one of many medical appointments because she was attending to her grandchildren and great-grandchildren when their parents couldn’t pick them up from school, or was assisting an emotional neighbor facing eviction, she maintained a resolve in her heart that her service to her family and community would provide her healing. She was not opposed to the care plan her health-care provider prescribed—not disobeying or refusing to comply. She simply moved toward what fulfilled her—what made her feel better—rather than following a plan that would have kept her from what mattered most to her.

When we consider what the provider’s staff reported as non-compliance, we must question whether Mama Clara’s provider had ever asked her about what effect the plan of care would have on her life or whether she thought the plan could work for her. When it was discovered that the plan was not working for Mama Clara, the discussion should not have been about her lack of compliance; it should have been about how Mama Clara and her provider could partner to devise a plan that would be effective medically while fitting as well as possible into the parameters of what mattered most to Mama Clara.

Larry Brown

Larry Brown took legal custody of his two toddler sons from their drug-addicted mom after she left them unattended while in search of a fix. Larry was illiterate, and often close to homeless, and he suffered from brittle diabetes requiring dialysis. As the boys grew, behavioral difficulties related to their cognitive and neurological delays from prenatal drug exposure became more evident, and he felt compelled to be present for any needs they had. Larry himself went without new clothes or haircuts so his children could have what they needed.

As his sons entered middle school with its many events and conferences, it became more difficult for Larry to get to his dialysis appointments on time, if at all. During one medical appointment for which he was 10 minutes late because the bus he took had detoured, a nurse new to the clinic demanded that he leave due to his history of “non-compliance” and his disheveled appearance. Few of his caregivers even knew of his commitment to his children.

They didn’t know, because they didn’t ask. The label non-compliant put Larry into a category that facilitated an attitude, on the part of the nurse, of, “If you’re not going to do right by us, we’re not going to do right by you.” The label non-compliant, which was documented in his file, marked Larry as a disposable person, and the nurse disposed of him.

Ethical Principles

These two stories of clinicians labeling people as non-compliant, when it was the clinicians who failed to adequately partner with their patients, show that the use of the term non-compliant raises ethical challenges (Browne, n.d.) that can be considered more thoroughly using four principles of biomedical ethics described by Beauchamp and Childress (2012): (a) respect for autonomy, (b) beneficence, (c) non-maleficence, and (d) justice. These principles serve as a foundation for conscientious reasoning, and can help us establish a more clinically sound perspective with which to consider the ethics of using the term non-compliant. In this article, I will discuss only the first three principles; applying the principle of justice to the social and emotional injustices of the use of this term merits singular focus and is beyond the scope of this brief article.

The problem of patients not following—not complying with—an established plan of care (also referred to as non-adherence, a term I see as softer, but ultimately no more helpful than non-compliance), refers to a legitimate concern of health-care professionals. However, the phenomenon of patients not following their care plans can be viewed either as a problem in need of a solution (e.g., clinicians working together with patients to ensure that care plans work within the patients’ personal goals, motivations, and daily activities) or as a problem for which the solution is simply that patients need to comply with the care plans provided to them.

Proponents of the term non-compliance maintain that non-compliant patients generally have less than optimal medical outcomes, and that billions of dollars in excess health-care costs are attributable to non-compliant patients (Iuga & McGuire, 2014). While there is little doubt that patients who choose not to follow their care plans often experience poorer outcomes, the question that will lead us to better outcomes isn’t, “How can we get patients to comply with our plans?” The question is, “How can we partner with patients and families to create care plans they are willing, and perhaps even eager, to follow?”

Nurses’ Ethical Responsibility to Support Autonomy

The American Nurses Association’s (ANA) Code of Ethics for Nurses with Interpretive Statements (Code; American Nurses Association [ANA], 2015) addresses the ethical imperative for nurses to regard patients’ decisions about plans of care without labeling or stereotyping. Provision 1 of the Code is, “The nurse practices with compassion and respect for the inherent dignity, worth, and unique attributes of every person” (p. v). Interpretive Statement 2 of Provision 1 (IS 1.2) states:

The need for health care is universal, transcending all individual differences. The nurse provides care with respect for human needs and values, which should be considered in planning health care with and for each patient. Such consideration does not suggest that the nurse necessarily agrees with or condones certain individual choices, but that the nurse respects the patient as a person. Interpretive Statement 1.3 of the Code states, “Respect is extended to all who require and receive nursing care in the promotion of health, prevention of illness and injury, restoration of health, alleviation of pain and suffering, or provision of supportive care” (p. 2). Part of this respect is recognizing that departures from the plan of care are not necessarily risky or self-destructive. By what criteria do we label patients non-compliant? And why should we question their rights, since they are autonomous individuals, to depart from the recommendations of providers who have created care plans for them that did not take their values, beliefs, goals, interests, habits, routines, or rituals into consideration?

Baby J

During my research for this article, an infant with complex medical conditions was admitted to the pediatric hospital in which I work. While assessing the baby, the physician noticed that the parents were placing her in a prone position for sleep, which is contrary to American Academy of Pediatrics recommendations (National Institutes of Health, 2007). The physician instructed the nurse to strongly encourage the parents to place the baby on her back for sleep. The nurse responded that she already has instructed them to do so, but that the mother refused, stating that the baby sleeps better prone. The physician then enlisted me, the nursing supervisor, hoping that I could be more persuasive in enforcing this standard with these “non-compliant” parents (the physician used this term). The mother again resisted initially, then wearily gave in and said, “Fine, then all of you stay up with her tonight.” Feeling unsettled by this interaction, I went home and researched this infant’s comorbidities. Of her conditions, one of them, Pierre Robin Syndrome, contains a contraindication to placing the baby supine for sleep, because of the potential for respiratory complications (Children’s Hospital of Philadelphia, n.d.).

This mother had something to teach us, even if she didn’t have all the details worked out. She knew that the baby slept better prone. Our eagerness to educate her—to offer her a one-size-fits-all plan for how her baby should sleep—kept us from suspending our own agendas and getting curious instead (Koloroutis & Trout, 2012). The physician’s labeling of the mother as non-compliant slowed the team in finding the best course of action for this mother and baby. A nurse who had come to believe (though perhaps only unconsciously) that people who are labeled as non-compliant are less worthy of our full and continued attention, might have simply walked away from the interaction satisfied that the mother had complied, leaving the baby open to further, possibly fatal, complications. Instead we were able to come back to the mother and baby with a plan that worked best for their exact circumstances.

Mike L

Mike is a combat-wounded Vietnam veteran with major Agent Orange exposure. Among his many health issues are peripheral neuropathy severe enough to confine him to a wheelchair and limit his hand strength and function, and congestive heart failure with significant leg edema and some pulmonary edema. His cardiology nurse practitioner recommends daily furosemide to help control his edema, but taking this diuretic usually necessitates staying close to a bathroom for the next 6 to 8 hours and keeping a urinal close at hand. If he takes it too late in the day, he is up at night voiding. So, on days when Mike has activities planned, he skips the diuretic, departing from that particular aspect of the care plan, even if the edema is worse that day.

This isn’t another story of a patient being labeled non-compliant and having a poor outcome. This is a story in which the patient’s values, beliefs, goals, and interests are considered. His nurse practitioner is completely supportive of Mike’s decision to depart from her diuretic recommendation sometimes, because his quality of life is improved by that decision.

Conclusion

We can never guarantee that the plans of care we develop will turn out to be the right choice for any patient in any situation. However, care plans that actively support individuals’ rights to self-determination and self-efficacy are far more likely to succeed. Our nursing practice may require a paradigm shift that goes beyond advocacy and encourages us to strive for “protection and enhancement of autonomy” (Coy, 1989, p. 829), eliminating any behavior that fails to respect the autonomy of the patient. The assumption of patients’ competence and therefore their capacity for autonomy and self-determination is morally, ethically, and legally established in the concept of informed consent (Coy, 1989).

When a patient who seeks advice from a provider chooses to depart from the resulting plan of care, the provider needs to gain insight into the reason(s) the patient has elected to act this way. Using the noun “compliance” to denote following a plan of care may be a practical, even positive use of this word. Identifying a departure from a plan of care is important for the patient’s well-being, but designating that departure with the noun “non-compliance” and the patient as “non-compliant” clearly implies that the patient is at fault. I propose an alternative way of thinking: When a patient departs from the plan of care, that departure can be our signal to offer additional support for a patient’s self-regulation and autonomous decision-making.

There is a reason that I have focused largely on the elimination of the term non-compliance without offering an easy alternative: It’s that an alternative label will not help us achieve our mission as health-care providers. We might refer to a situation in which we would formerly have labeled the patient as non-compliant by saying the patient is exercising patient prerogative or patient privilege, but that language doesn’t point us at a solution either; it just softens the blow as we keep the focus on how the patient has not done what we said to do.

It is likely that the paradigm won’t shift just because we’ve changed one term anyway, and it’s unlikely that the label non-compliant will go away any time soon. Perhaps the solution is for you and me, and all who read this article, to let the term non-compliant be our personal and professional call to action to get curious about what the patient needs that we have obviously failed, so far, to offer. Our professional code of ethics demands that we demonstrate, in every interaction, that not one of our patients is disposable, and that all of our patients are worthy of our complete attention, whether they do what we ask of them or not.