Patient-Provider Communication: Contextual Observations of Kaiser Permanente s. Oncologists and Directions for Future Research

Transcription

1 Patient-Provider Communication: Contextual Observations of Kaiser Permanente s Oncologists and Directions for Future Research Cancer Communication Fellowship Paper Rachel Faulkenberry August 15, 2011

2 High-quality patient-provider communication is often associated with improved health, effective chronic disease management, and better quality of life (Aurora, 2003). The discourse between doctor and patient is particularly salient during the cancer treatment experience, since it involves long durations of treatment with multiple modalities, complex information, the need for long term clinical relationships, and periods of uncertainty (Epstein and Street, 2007). To fully understand the communication between patients and providers, it is important to consider the multiple layers of context surrounding the discourse, including disease factors, media environment, and the healthcare system (Epstein and Street, 2007). Kaiser Permanente, Colorado is a large healthcare organization that provides several levels of cancer care to patients throughout the cancer continuum. Witnessing the day-to-day interactions of oncologists and their patients within a large organizational setting provides a unique opportunity to view a system that places the patient as central within layers of a larger structural context. The purpose of this paper is to report on the observations that were recorded and to provide a theoretical basis for future research that would benefit both oncologist and patient. Observations Two mornings in July 2011 were spent shadowing oncologists in the Kaiser Permanente Denver location as they conducted their patient visits and other duties. Electronic Medical Records The Department of Health and Human Services asserts that meaningful use of electronic medical records (EMRs) will improve medical care in the US through providing complete and accurate health information, better access to information, and patient empowerment (U.S. Department of Health and Human Services, 2011). Others have also lauded the ability of EMRs

3 to improve the safety, quality, and efficiency of the healthcare system (Bonander & Gates, 2010; Chopra & McMahon, 2011). Kaiser has adopted the use of a comprehensive EMR system that links patient data and communication across healthcare teams to improve the patient experience. Kaiser oncologists interact with the EMR to perform several functions, including to check patient vital signs, recent lab tests, trends, and to write notes from recent patient consultations. For inpatient visits, this technology was utilized before and after a visit to a patients room. For outpatient visits, patients and oncologist often viewed the medical record together, looking at items such as recent labs or trends in outcomes. EMRs seemed particularly useful in orienting oncologists to newly referred patients; medical records could be reviewed prior to the first meeting for details such as past courses of treatment, co-morbid conditions, recent lab data, and any relevant notes from previous oncologists. EMRs also offered useful ways to visually depict data, including line graphs illustrating trends, that could be used internally as a quick snapshot for outcomes or to provide a frame of reference for patients. Communication Channels Oncologists are constantly in communication with patients, doctors, and members of the healthcare team. This communication can range from simple face-to-face actions to phone calls or electronic queries. Oncologist to patient- A significant portion of the oncologists day involves checking in with patients (both inpatient, by visiting hospital rooms, and outpatient, by seeing scheduled patients throughout the day). The details of these interactions vary depending on the needs of the patient. Oncologists tailor their approach to align their communication styles with the patients comprehension level of their disease, severity of their cancer, treatment needs, levels of anxiety,

4 and length of time as a patient with the oncologist. Often more time was spent with new patients to orient the oncologists to the patient s treatment needs and goals, with frequent referral to data stored in the EMR to provide context. In outpatient settings, patients often called in with questions about ordered treatments and labs. Oncologists also often deliver the news of a terminal diagnosis, and may be the first to suggest hospice care or the creation of do not resuscitate orders. Oncologist to caregiver- In addition to the complex patient relationship, oncologists often interact with patients caregivers. Oncologists must answer questions and concerns of caregivers and in many cases involve them in patient care or the decision-making process about cancer treatment and end of life options. Oncologist to oncologist- Information flows between oncologists through a variety of channels, including tumor board meetings, patient rounds, informal discussions, and phone consultations. Oncologist information exchanges most often revolve around treatment options and patient medical characteristics. Within patient round settings, reporting current status updates on hospitalized patients also serve as a learning opportunity for junior residents. The EMR also provides options for information sharing of labs and other medical details to other Denver hospitals. Oncologist to healthcare team- Oncologists often converse with other members of the healthcare team, including nurses, physicians assistants, and members of the palliative care team to discuss patient lab results and other outcomes or patient concerns. Oncologist to external healthcare personnel- Oncologists may write prescriptions that are documented in the system and sent to pharmacists, and can send requests for blood work directly

5 to the lab. Coordination between versions of the EMR software also allow for oncologists working on the inpatient wing to keep up with their patients at offsite clinics. Oncologist interaction with technology- The oncologists frequently interact with the EMR system, both to check medical records for patients and to answer questions submitted electronically by members of the healthcare team. When preparing for a patient visit, oncologists may also search trusted web resources for algorithms and charts to discover possible explanations for an abnormal lab result. Oncologists often must interpret these lab results in context with information from outside sources to determine what values might be cause for concern or what might be attributed to other lifestyle behaviors or co-morbid conditions. Crisis communication. In between patient visits, reviewing and updating charts, and answering queries, emergencies and urgent matters involving patients health status and treatment often interrupt the usual day-to-day flow of the office. Oncologists may have their attention diverted to these issues and often attend to them immediately. Organizational structure of Kaiser Permanente Kaiser Permanente Colorado is a high-functioning network filled with several levels of cancer care. A key advantage of the Kaiser network involves having many of the components for cancer treatment and care within one system that is linked through the EMR. The organizational structure also allows for constant information exchange and opportunities to learn new treatment advances and confer with other professionals within the Kaiser network. Kaiser also employs palliative care teams and social workers that can help coordinate long-term care and hospice options, creating an efficient way to assist patients in their care outside of the hospital doors.

6 Theoretical Applications Coordinating care for cancer patients is complex and requires many channels of communication, information, and support. There are several characteristics of the direct communication between oncologist and patient that may influence decision-making and final health outcomes. However, these discourses do not occur in a vacuum and are subject to both parties operating within complex systems that exist beyond the doors of the examining room. By situating both the direct communication and the larger context within a theoretical lens, it becomes apparent that two models may best situate this complex encounter for further study. Such a combined framework may imbed the oncologist-patient relationship within a model that can attend to the ecological scope of factors that may influence the final health outcomes for the patient. Model 1- Pathways to health outcomes of patient-provider communication In an explanation of the patient-provider relationship, Street and Epstein (2008) suggest a model that illustrates the different mechanisms that can account for ways in which patientprovider communication may impact patient health outcomes (Figure 1). According to the authors, this communication may work through direct and indirect pathways to influence final health outcomes, which include survival, reduction of suffering, emotional well-being, and pain control. The use of both direct and indirect pathways to patient outcomes was observed within the oncologist-patient encounters. In some instances, oncologists were able to alleviate emotional distress directly by reassuring patients that test results were improving and fostering immediate information exchange. Situations were also observed where physicians aided in more indirect pathways, such as building a new relationship with a patient, to lead to shared decision-making

7 and a commitment to certain forms of treatment. Both direct and indirect pathways were often aided by the EMR. In outpatient settings, EMRs could often facilitate instant reduction of distress by producing a visual display of improved lab results. EMRs were also heavily involved with building new relationships, with oncologists referring to the record to learn more about the patient s condition and letting the patient feel understood and involved in their medical history and future treatment. Within the model, the authors acknowledge both intrinsic and extrinsic moderators that may influence this communication, including a number of cognitive, behavioral, cultural, organizational, and economic factors. An overarching framework that can best organize these moderators may be useful in understanding the complete range of factors that may influence the oncologist-patient relationship. Model 2- The Ecological Model The Ecological Model by McLeroy, Bibeau, Steckler, and Glanz (1988) accounts for individual and interpersonal factors that impact behavior and places them within the context of the social environment. McLeroy and colleagues identify five sources of influence on health behaviors, including intrapersonal factors, interpersonal processes, institutional factors, community factors, and public policy (Table 1). The model posits that these multiple dimensions of influence on behaviors interact across and within each other, over time. The use of the constructs of the Ecological Model may provide a larger context for exploratory research or for the design of interventions that may occur within the Kaiser system. Intrapersonal- Both patients and oncologists bring a range of personal experiences, behaviors, attitudes, and knowledge to the healthcare discussion. Factors such as a patient s level of health literacy or their cancer knowledge may play a part in their communication with their

8 oncologist. Their beliefs and value systems may influence their decisions for courses of treatment or end of life options. Additionally, an oncologist s previous training and current knowledge of treatments and other advances in cancer care may impact how they view the encounter and the influence the suggestions they provide. Interpersonal- The channels of communication listed above are examples of the complex web of relationships that may exist for oncologists as they coordinate care for the patient. Central to this construct is the relationship between an oncologist and their patient (as detailed by the patient-provider communication model), but this interaction is also influenced by the patient s support network, such as the beliefs and opinions of their primary caregiver, and other institutional partners of the oncologist (below). Institutional. Oncologists operate within the larger Kaiser network, and work within the rules and structure of the organization. Characteristics of the organization s work flow (for example, the structure of the oncologist s patient schedule, time needed to interact with the EMR interface, and time to deal with other questions and obligations) must be considered when understanding the larger context for the oncologists interactions with patients. These factors may be key when designing sustainable interventions that deliver communication support to oncologists. Kaiser also has the benefits of other departments within the organization, including health research and community outreach, which increase the community s trust in Kaiser and work to better the network s internal processes. Additionally, researchers that are located within the organization are better situated to act to address the challenges or needs that oncologists and other providers identify. Community. Both oncologists and patients operate within the larger community of Denver and its available resources. Often follow-up instructions for patients may include several

9 to-do items that involve consideration of the patient s work schedule, transportation arrangements, and ability to access relevant clinics and labs. Another key piece of the larger community environment involves outside sources of information. This may include information available to the patient in the form of advice and articles on treatments, herbal remedies, and descriptions of the cancer experience, with a particular emphasis on information available on the internet. Oncologists also utilize information that is made available online, at conferences, and through dialogues with peers. Policy. Larger healthcare policies and changes in healthcare access may also impact the types of care available and the drugs that are approved for use. Areas for Future Research In addition to the strengths of the Kaiser system, observations revealed opportunities to continue to support oncologists as they work with patients. Topic 1- Information through the EMR available to patients Within Kaiser s EMR system, patients have access to a version of their health record that provides a limited scope of information, including lab test results. Within the patient-provider communication framework, Street and Epstein (2008) suggest that decision making and information exchange facilitated through patient-provider communication can impact a patients health through proximal outcomes such as patient understanding of information and clinicianpatient agreement. However, as the patients access to information moves beyond the walls of the clinic, there may be a greater chance for misinterpreting health data, particularly if they do not understand the contents of their EMR.

10 Patients ability to fully interpret their EMR data may involve high levels of health literacy and numeracy. Low health literacy may restrict patients ability to be an active participant in their medical care because of limited familiarity with health related terms (Davis et al., 2002). Confusion about lab results, particularly when taken out of context, were cited to cause increased patient anxiety as well as increased time the oncologist must allot to easing worry and explaining test results. Further, patient misunderstanding of lab results or other notes may lead to accessing of incorrect data from mistrusted websites. For example, oncologists cited tensions between a recommended course of treatment and incorrect information that the patient had found from an online source. Cancer patients may be exposed to a bewildering amount of confusing or contradictory advice, and may find it challenging to interpret (Viswanath, 2005). Such misunderstanding or misinformation may add complexity to the ability for patients and oncologists to reach agreement on a certain treatment path. Research questions could be crafted to better understand the usage of the EMR by patients and how this may impact their encounters with physicians. Resulting projects could work to play on the strengths of the EMR system while reducing physician time answering questions and alleviating patient anxiety from interpreting complex details. Some questions could be explored from existing EMR data: What is the reading level of the current EMR data that patients can access? Are there certain patient characteristics (demographics, cancer type, illness stage) that are associated with the number of questions asked to the oncologist about EMR data? Other questions may require additional quantitative and qualitative data: What are the strengths of the patient EMR? How do they facilitate better communication during office visits?

11 Are a patient s levels of literacy and numeracy associated with their anxiety level over EMR data? Are certain patient characteristics (demographics, cancer type, illness stage) associated with anxiety over items in the EMR? Are certain patient characteristics associated with supplementing EMR data from outside information sources? What aspects of the EMR do patients find the most confusing? What aspects of the EMR do oncologists perceive are the most confusing for patients? Topic 2- Support for oncologists in end of life discussions Within both inpatient and outpatient settings, oncologists are often working with patients who have terminal diagnoses. Compared to other terminally ill individuals, patients with cancer often face greater end of life challenges and steeper quality of life declines (Downey & Engelberg, 2010). Communication challenges between caregivers, patients, and doctors have been a significant barrier in coordinating and providing end-of-life care (Eues, 2007). Identifying possible barriers and providing ways to facilitate open communication may offer patients and oncologists the chance to define the goals and expectations for the medical care that the patient desires near death (Wright et al., 2008). Key theoretical constructs such as managing uncertainty by providing a realistic picture of survival and helping patients and their families make decisions for a dignified death may decrease suffering, increase pain control and improve emotional wellbeing for patients near the end of life. Despite the complexities of end of life discussions, many oncologists have not had the opportunity for extensive formal training in this area and instead learn through practice and observation. It may be beneficial for oncologists to receive further training to understand the

12 larger, ecological scope of factors that may create barriers or facilitators to a dignified death. Possible factors include how to address patient denial or acceptance of their condition, influences from caregivers and family networks, institution-wide resources for palliative care, and hospice resources available in the community. Future research and interventions should address ways to combat compassion fatigue and uncertainty of how to deliver the news of a terminal diagnosis. Oncologists also mentioned challenges with patients and their families holding onto miracle cure stories they found in the media and requesting further treatment based on hope generated from the article. Strategies involving how to help families set realistic expectations may also be beneficial to future oncologist-based interventions. It is proposed that exploratory research with oncologists within the Kaiser network may illuminate some areas for continued support as they deliver the news of a terminal diagnosis and make further recommendations for a dignified death. A qualitative study involving oncologists identified needs for end of life communication support that fully considers their workload and competing priorities may be best suited to provide a system to structure end of life discussions. Potential research questions may explore oncologists wishes for further end of life training, how best to deliver end of life education to them, ways to involve the EMR for end of life care, and what further support systems or links to palliative care would be beneficial as they engaged in these discussions. Discussion and Conclusion The opportunity for observation within the Kaiser Permanente network provided unique insight into the daily schedules of oncologists and an opportunity to observe how different levels

13 of the organization come together to improve the lives of Kaiser patients and their community. Observations revealed that Kaiser s oncologists employ many communication channels, particularly the EMR, to remain closely connected to their patients. They also closely tailor their communication to the needs of the patient and their family and take opportunities to facilitate their own education of cancer advances as well as the education of their peers. Information exchange also occurs across levels of the Ecological Model, particularly for patients accessing outside media sources for supplemental information. Opportunities for future research emerged from themes of addressing information exchange with patients and supporting oncologists in end of life discussions. Placing these themes in a theoretical context deepened the understanding of the multiple factors that must be included when conducting research and designing interventions within the system. Furthermore, these observations provide a rich background for future dissertation research in the field of patient-provider communication.

14 Figure 1. Pathways of Patient-Provider Communication (Street and Epstein, 2008)

15 Table 1. Constructs and Definitions of the Ecological Model (McLeroy et al., 1988) Level Intrapersonal Factors Interpersonal Processes Institutional Factors Community Factors Public Policy Definition Characteristics of the individual, such as knowledge, attitudes, behavior, self-concepts. This includes the developmental history of the individual Formal and informal social network and social support systems, including the family, work group, and friendship networks. Social institutions with organizational characteristics and formal (and informal) rules and regulations for operation. Relationships among organizations, institutions, and informal networks with defined boundaries. Local, state, and national laws and policies.

16 References Aurora, N.K. (2003). Interacting with cancer patients: The significance of physicians communication behavior. Social Science & Medicine, 57, Bonander, J., & Gates, S. (2010). Public health in an era of personal health records: opportunities for innovation and new partnerships. J Med Internet Res, 12(3), e33. Chopra, V., & McMahon, L. F., Jr. (2011). HITECH, Electronic Health Records, and Facebook: A Health Information Trifecta. Am J Med, 124(6), Department of Health and Human Services (2011) Electronic Health Records and Meaningful Use. Retrieved August 10, 2011, from Downey, L., & Engelberg, R.A. (2010) Quality-of-life trajectories at the end of life: Assessments over time by patients with and without cancer. Journal of the American Geriatric Society, 58(3): Epstein RM, Street RL Jr. Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering. National Cancer Institute, NIH Publication No Bethesda, MD, Eues, S.K. (2007) End-of-life care: Improving quality of life at the end of life. Professional Case Management, 12(6): Davis, T.C., Williams, M.V., Marin, E., Parker, R.M., & Glass, J. (2002) Health literacy and cancer communication. CA: A Cancer Journal for Clinicians, 52, McLeroy, K.R., Bibeau, D., Steckler, A. & Glanz, K. (1988). An ecological perspective on health promotion programs. Health Education Quarterly, 15(4): Street, R.L. and Epstein, R.M. (2008). Key interpersonal functions and health outcomes: Lessons from theory and research on clinician-patient communication. In Health Behavior and Health Education: Theory, Research, and Practice. Eds. Glanz, K., Rimer, B., & Viswanath, K. Jossey Bass, San Francisco. Viswanath, V. (2005). The communications revolution and cancer control. Nature Reviews, Cancer, 5(10): Wright, A.A., Zhang, B., Ray, A., Mack, J.W., Trice, E., Balboni, T., Mitchell, S.L., Jackson, V.A., Block, S.D., Maciejewski, P.K., & Prigerson, H.G. (2008) Associations between end-oflife discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300(14):