By Kathleen Flecky, OTD, OTR/L
How to ethically handle patients who do not fit the compliant, motivated patient model. Some words have sticking power. Like a stubborn adhesive price tag, words such as noncompliant, difficult, and uncooperative are difficult labels for patients to shake off and health care professionals to ignore. Patients receive these labels from their caregivers for a variety of reasons, such as not following prescribed medical regimens, not keeping medical appointments, refusing treatment, or not making healthy lifestyle changes. These labeled patients collide with the provision of health care, which requires constant attention to cost and outcome efficiency standards, and beliefs that patients should be active, responsible, and cooperative participants in their own care. But in our concern as health care professionals to manage care, as Gomez states, "The danger we run here, and it is very real, is that we forget that people (especially people who are ill) are inherently messy, and getting messier (as they grow older) all the time.... They arrive not wanting so much to be managed, I think, as to be cared for."1 When patients appear uncooperative in participating in their care, how can caregivers address the potentially conflicting ethical principles of autonomy, beneficence, and justice in relationship to all the players involved-including the patient, family, reimbursement sources, health care institution, other providers, and society as a whole? How can rehabilitation professionals demonstrate caring for "uncooperative" "demanding" patients in a health care environment that can be similarly uncooperative and demanding for the caregiver? The case Mr Geary is a 68-year-old, self-employed businessman who has asthma and diabetes. He recently was admitted to the rehabilitation unit after an acute asthmatic episode that has exacerbated his diabetes. He had a lengthy admission to this same unit after a diabetic crisis 6 months ago, at which time his physician initiated an extensive rehabilitation team education effort to address Mr Geary's medical problems in relationship to his lifestyle risk factors of smoking, drinking, and obesity. At that time, the rehab staff described Mr Geary as uncooperative in therapy sessions, and noncompliant with medication regimens, home exercise protocols, and rehabilitation outpatient appointments. During this current hospitalization, Mr Geary is refusing therapy and is perceived as verbally abusive to staff when they attempt to engage him to participate in his care. As one of Mr Geary's therapists, you are ethically distressed over what you perceive as biased and discriminatory behavior by rehab team members toward Mr Geary. Some members of the rehabilitation staff blame Mr Geary for his current health state, and although they attempt to engage him in goal setting and therapy, they appear relieved when he refuses-there are so many more patients on the rehabilitation floor who require their attention. An ethic of care approach This hypothetical case is representative of the everyday work of rehabilitation ethics. Rehabilitation professionals may frequently experience ethical situations that reflect conflicts in patient rights issues and patient/team disagreements involving the ethical principles of beneficence, autonomy, and justice.2,3 In this case, Mr Geary's right to make autonomous decisions may conflict with the therapists' duty to provide care. In addition, the therapist may struggle with providing equitable services to all the patients, including Mr Geary, who require their services within limited resources of time. Rehabilitation team members, the facility, and third-party payors may have differing values and beliefs on the responsibility of Mr Geary to participate in his own health care and the responsibilities and duties of caregivers to address his lack of participation. Ethical frames of analyses provide a way for professionals to address ethical situations and resolve ethical conflicts. More traditional frames of analysis include utilitarian, deontological, and ethic of justice models, which focus on the rights, duties, and universal ethical principles in ethical decision-making. Alternatively, an ethic of care addresses how these same ethical principles (autonomy, beneficence, justice) apply within a contextually defined, relationship-based approach to ethical decision-making. In describing an ethic of care, Carol Gilligan asserted that not only are masculine and feminine ways of knowing the self different, so also are the masculine and feminine ways of approaching ethical reasoning and decision-making.4 Based on the work of Gilligan, an ethic of care highlights the particular context of relationships and values the subjective, interpersonal aspects of ethical reasoning. This model is in contrast to the traditional Kantian, utilitarian, and justice models of ethical reasoning that emphasize the objective, generalized, individual aspects of duty-based and principle-based ethical decision-making.5,6 Although this type of moral reasoning is not limited to women, an ethic of caring is illustrative of the unique process by which many women learn to engage in moral problems through the "engrossment" of themselves in real, concrete situations and making ethical decisions based on the roles and responsibilities of being in relationship to others.7 This engrossment demands moving beyond objectivity and detachment to understanding the context and relationships of an ethical situation. Compassionate Acts In Mr Geary's case, although a consequence of the right to informed consent and autonomy is the right to refuse participation in therapy, this right can conflict with the best interests of the team for the patient. The team may struggle to avoid what may be considered paternalistic or coercive behavior in engaging the patient in rehabilitation goals that are viewed as best practice care. Balancing patient rights and professional duties is confounded by the urgent needs of other patients and the obligation to meet outcome and clinical pathway standards of care. Additionally, the values and perceptions of the "uncooperative" and "noncompliant" patient play a powerful role in a patient-provider relationship that is already strained by the above factors. Mr Geary's refusal to participate in therapy may reflect a value conflict around the question of who establishes therapeutic goals and how these goals should be implemented. In establishing a caring relationship with Mr Geary, it is advantageous to ascertain what might be the barriers to his participation in his health care goals and then develop strategies to motivate him to take a more active role in therapy. Key questions are: Why is Mr Geary uncooperative? What are values and motivations behind his uncooperative behavior? What is compliance?8,9 Within an ethic of caring, caregivers must be aware of the unequal power inherent to patient-caregiver relationships. Patients come to caregivers within a relational context of vulnerability and dependence on others. Caregivers can exploit this relationship to enhance their own needs and vulnerabilities. Noddings would likely describe this patient-provider relationship as an "unequal meeting," or an "opportunity missed for the caregiver to display a caring attitude essential within an ethic of care."7 In a managed care setting, with an emphasis on cost and outcome efficiency, establishing caring relationships and engaging in compassionate acts with patients that honor them as unique individuals with unique needs and concerns can be challenging. Living within the framework of an ethic of care as a practitioner is no easy task-it requires compassion, sensitivity, and moral courage to be committed to caring relationships. There are risks in establishing caring relationships and practicing compassion with patients. Any relationship involves reciprocity. In a caring patient-provider relationship, although the power is inherently unequal due to the vulnerability of the patient, there is always a response by the patient to the provider.7 As in Mr Geary's case, this response may not be that of a grateful and appreciative patient. The caregiver's challenge then becomes to develop a nurturing and interdependent relationship that is the heart and soul of connected caring.10 Interdependence, rather than dependence or independence, requires an openness of the caregiver to reciprocity and the possibility of rejection. In order to maintain healthy interdependent caring relationships, the caregiver needs to practice self-care and engage in conscious self-reflection by sharing the challenges of caring practice.11 These self-care issues will be explored further in the final section on caring strategies to practice compassionate acts in rehabilitative practice. Practicing compassion Health care professionals engage in compassionate acts when they assert their right to care for themselves while fostering caring relationships of respect, connection, and collaboration with their patients. Compassion acts begin with an awareness of our own worth, strengths, and vulnerabilities as caregivers. Purtilo proposed a six-step guide for caring for difficult patients: 1) the avoidance of blaming the patient; 2) the avoidance of using objectifying labels for patients; 3) remembering that caring is an important function of any intervention; 4) developing realistic views of power in patient relationships; 5) engaging in emotional self-care; and 6) working to change institutional and sociocultural values that interfere with caring. This six-step guide is a useful starting point to creating your own strategies for caring, compassionate practice. I would add the following affirmative steps to Purtilo's guide: 1) engage in regular, reflective dialogue about your caregiving roles with a trusted professional colleague; 2) reflect and act on fulfilling your own needs within the context of your caring relationships; 3) practice being a reciprocal caregiver-be willing to receive from patients; and 4) practice being compassionate within all your patient relationships. The act of creating and acting on your own caring plan for "uncooperative patients" will prove to be morally efficacious and affirm the principles within an ethic of care approach. Kathleen Flecky, OTD, OTR/L, is an assistant professor in the Department of Occupational Therapy at Husson College in Bangor, Me. References
