6  

Exploring Ethical Issues Related to Person- and Family-Centered Care

MARY K. WALTON

LEARNING OBJECTIVES AND OUTCOMES

As a registered nurse, you have seen the degree of patient and family involvement in decision making regarding nursing care varies depending on the patient’s individual needs, preferences, and values. Nursing practice has always centered on the care of the patient, although the relationship has varied, ranging from the nurse providing total care and making all the decisions to one that can be accurately characterized as a full partnership where the expertise of the patient and family, if the patient wishes, is valued equally with that of the nurse. In such a partnership the patient and nurse jointly identify the problem, establish goals, create a plan of care, and evaluate the success of the plan. The term patient centeredness, introduced in medical literature (Balint, 1969) to characterize the concept of understanding each patient as a unique human being, is now recognized as an essential concept to achieve quality in health care (IOM, 2001). As you read this chapter, think about relationships and concerns you have experienced in caring for patients and families regarding decision making in their nursing care.

CASE SCENARIO

BACKGROUND

Societal changes marked by the quality and patient safety movement, consumer demand, and regulatory and accrediting bodies are forcing health care settings to shift the culture to one truly centered on the needs of patients and families rather than on the preferences of providers. Furthermore, provisions in the American Nurses Association (ANA) Code of Ethics for Nurses, the ethical standard for professional practice, mandate attention to the primacy of the patient’s interests, the right to self-determination, and the recognition of the unique needs of the individual (ANA, 2015a).

Clinical nurses practicing in acute care settings are likely to be challenged to provide PFCC as patient values and preferences may be invisible or alternately not honored as they conflict with clinician or organizational values. However, their proximity to the patient in a therapeutic relationship places them in a pivotal position to promote this cultural transformation albeit requiring significant changes in nursing practice. Ethical concerns will likely arise for clinical nurses with the recognition of professional obligations as well as honoring personal values, the values of their organization, and those of the patient and family. In this chapter, several ethical issues will be identified along with the requisite knowledge, skills, and attitude (KSA) that support the provision of PFCC.

Question to Consider Before Reading On

1.   How would you define PFCC in your current practice setting?

WHAT IS PFCC?

The Institute of Medicine, in its landmark report Crossing the Quality Chasm, identified one of six imperatives for quality as patient-centered care, defined as “providing care that is respectful of and responsive to individual patient preferences, needs and values and ensuring that patient values guide all clinical decisions” (IOM, 2001, p. 40). An extension of the IOM definition of patient-centered care developed for the Quality and Safety Education for Nurses (QSEN) work highlights both nursing’s obligations to patients and the importance of partnership, “recognizing the patient or designee as the source of control and full partner in providing compassionate and coordinated care based on respect for patient’s preferences, values and needs” (Cronenwett et al., 2007, p. 123).

Partnership and engagement are central to achieving an exceptional experience in the inpatient setting:

          Every care interaction is anchored in a respectful partnership, anticipating and responding to patient and family needs (e.g., physical comfort, emotional, informational, cultural, spiritual, and learning).

          Patients are part of the care team and participate at the level the patient chooses.

          Care for each patient is based on a customized interdisciplinary shared care plan with patients educated, enabled, and confident to carry out their care plans. (Balik, Conway, Zipperer, & Watson, 2011, p.14)

Question to Consider Before Reading On

1.   How are the these aspects of partnership and engagement integrated in your current practice?

An analysis of the concept of patient centeredness through the formal theories of ethics justifies the concept as the ethical approach to care (Duggan et al., 2005)

Although the QSEN competency reads patient-centered care, the term person- and family-centered care is more representative of the concept. Many experts have brought forth the idea that in order to treat the patient, one must see the person (Barnsteiner, Disch, & Walton, 2014; Koloroutis & Trout, 2012; Schenck & Churchill, 2012). Moreover, individuals are engaging in health care beyond the hospital walls and family plays a significant role in health care experiences.

ETHICAL ISSUES ARISING IN PFCC

The Code of Ethics for Nurses embraces the ethical demands of respecting the wholeness of the person dwelling in a family and community (ANA, 2015a). However, models of ethical decision making in clinical practice traditionally focus on quandary ethics using formal biomedical principles and theories to examine dilemmas and conflicts often to the exclusion of the importance of everyday skillful ethical comportment (Dreyfus, Dreyfus, & Benner, 2009).

Ethical dilemmas often present with the dramatic events in health care where decisions may have an immediate and irreversible impact on patients and their loved ones—listing for transplant, whether to use invasive life-sustaining technology, or whether to limit or withdraw aggressive care. However, the attention given to these momentous decisions characterized as “quandary ethics” draws attention away from the everyday ethical issues embedded in nursing practice:

Although the challenges that face patients, families, and clinicians at the margins of life require skilled analysis, as the field of bioethics has matured, there is increasing recognition of the ethical aspects of everyday clinical practice—microethics rather than quandary ethics (Churchill, Fanning, & Schenck, 2013; Truog et al., 2015). The constant small decisions made in routine, everyday interactions are inherently ethical in nature; they have significant impact on vulnerable patients and families. Every clinical encounter between a nurse and a patient or his or her family member is an opportunity to care; the act of caring is a moral ideal and foundational to the practice of nursing (ANA, 2015b).

Looking at nursing practice through the lens of PFCC reveals opportunities that arise for ethical issues and conflicts for clinical nurses in the acute care setting. Three ethical issues related to the introductory Case Scenarios for analysis are:

1.   Ensuring that the patient’s voice has primacy over that of the nurse

2.   Honoring the choices of the patient even when they conflict with those of the nurse

3.   Engaging with family as the patient directs

Questions to Consider Before Reading On

1.   What are some microethics issues you have encountered in your daily practice?

2.   How did you identify these as ethical in nature?

Primacy of the Patient’s Voice

The need for patient-centered care is recognized in the Institute of Medicine report The Future of Nursing: Leading Change, Advancing Care, “yet practice still is usually organized around what is most convenient for the provider, the payer, or the health care organization and not the patient. Patients are repeatedly asked, for example, to change their expectations and schedules to fit the needs of the system” (IOM, 2010, p. 51). PFCC calls for clinicians to re-envision how work is accomplished by shifting the power base from the clinician to the patient toward establishing a partnership for safe, high-quality care. In fact, no longer is the clinician’s evaluation of the quality of care considered the ultimate measure of quality. How the individual person experiences care is now a recognized quality metric; patient experience is broadly defined as “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care” (Wolf et al., 2014). However, in the acute-care setting, where professionals from many disciplines are responsible for accomplishing myriad tasks in set chronological 24-hour time blocks, staff schedules and unit routines hold higher priority than patient preferences and dictate practices to achieve standardization, efficiency, and safety. For clinical nurses, individualizing care presents challenges; furthermore, seeing the patient as the source of control and a full partner may seem virtually impossible. Nurses often describe their own inability to have control over schedules, let alone more complex care issues. While standardization can promote safety and efficiency, it is blind to individual needs and preferences. Nurses are uniquely positioned to engage patients in articulating their values and preferences and creating partnerships to ensure clinical decisions reflect the same.

CASE SCENARIO (CONTINUED)

Valuing Patient and Family Choices Over Those of Nurse and/or Organization

For inpatient experiences to be both satisfactory to the patient and achieve quality health outcomes, patients need to be actively engaged in their care. The Nursing Alliance for Quality Care (NAQC), which includes both nursing and patient/consumer representatives, endorses the vision of partnership, competent decision making, and ethical behavior to achieve high-quality and safe care. Nurses must support patients not only in making competent, well-informed decisions, but also in supporting their actions in carrying out those decisions (Sofaer & Schumann, 2013). The nurse is in the ideal position among health care providers to experience the patient as a unique human being with individual strengths and complexities in order to advocate from a patient rather than a provider-centric stance. Gadow’s concept of existential advocacy expresses the ideal that advocacy is “the effort to help persons become clear about what they want to do, by helping them discern and clarify their values in the situation, and on the basis of that self-examination, to reach decisions which express their reaffirmed, perhaps recreated, complex of values” (Gadow, 1980, p. 44). This approach to nursing’s advocacy role can ensure that a patient’s decision is actually self-determined rather than a decision that a clinician would choose for him or her.

The Case Scenario illustrates a lack of coordination and continuity of care among the bedside nurses as well as open conflict about one of the strategies to treat the patient’s cardiac symptoms. The nursing staff is not in agreement about honoring the medical orders and there is no evidence of any collaboration with the patient and/or the interprofessional team about this aspect of care. Given the patient’s years of experience—in fact, his established expertise—the Case Scenario does not indicate that the patient’s perspective on this issue is sought. Clinical nurses will appreciate the frustration of working with physicians who expect medical orders followed; however, can they imagine how a person with an intense thirst feels when begging for fluids? In the Case Scenario, Mr. Jones is clearly not the source of control nor does it seem decisions are based on his preferences and values. Exploring the patient’s experience with managing his cardiac condition and his goals not only for the hospitalization but also for his future is indicated. Did he participate in and agree to the plan for fluid restriction? Is his refusal to adhere to medical recommendations a signal that he wants to renegotiate goals? Is he evaluating the risk/benefit equation and deciding the burden of tight fluid control is not worth the benefit of reduced symptoms? Perhaps he does not believe fluid restriction is effective. Could a care-planning discussion with the patient and the clinical team reveal new goals and/or strategies that the patient can support? Can nurses and physicians accept and honor decisions that Mr. Jones makes based on his values and goals, even if they do not represent standard medical practices?

Questions to Consider Before Reading On

1.   Recognizing the variation in the clinical nurses’ response to Mr. Jones’s requests for fluids, how might you engage your colleagues in coordinating the plan for fluid restriction with the patient? Who could be an ally?

2.   Do you think “giving in” accurately characterizes professional practice? Alternately do you believe following medical orders against the patient’s wishes reflects ethical practice?

Engaging Family in Care

Stay updated, free articles. Join our Telegram channel

Join