Abstract
Over the past 20 years in theUSA, increased insurance control of healthcare decisions, litigation and regulations, have contributed to a dramatic shift in the doctor‐patient relationship and respective responsibilities. This paper presents an autoethnographic study of the self‐directed learning (SDL) strategies and patterns used by an individual navigating the complexities of not only chronic pain, but also healthcare decision making over ten years. The study and discussion examine the experience within the lens ofSDL(Self Directed Learning) and demonstrate its power to transform passive patient behavior to proactive responsibility. This study specifically revealsSDLstrategies used in a chronic pain healthcare journey including, self‐planned learning, inquiry methods, self‐education, self‐instruction, self‐teaching, and self‐study. My travels through urgent and confounding situations were propelled by healthcare processes that failed. The paradigm of self‐directed learning holds promise for mainstream recognition in personal healthcare.
Since the 1990s, medical healthcare has experienced an onslaught of challenges in changing practices, policies and responsibilities as multiple players try to preserve their financial strength amidst rising costs, litigation, regulations and rapid innovation (Kooijman, ). Consider the impact of continuous proposed changes in healthcare reform swinging back and forth like a pendulum amongst different administrations among the most recent Presidents from Clinton, to Bush, and now Obama. There have been a multitude of constellations of insurance company plan vehicles (HMO, PPO, etc.), that included basic coverage, exclusions, and limitations. These factors contribute greatly to changing the traditional doctor‐patient relationship.
There was once a time when most health care patients thought they could rely on their physicians to honestly protect their best interests. Doctors were believed to spend ample time examining, treating and advising them; however, these approaches have mostly disappeared. The cause of the change in treatment practices include: the need for physicians to comply with extensive and frequent healthcare insurance demands, legal claims, new federal healthcare regulations and policies, changing laws, and increased restraints placed on them by malpractice insurers(Porter & Olmsted Teisberg, ; Schuster, McGlynn, & Brook, ).
The following example illustrates one such pressure which directly affects patient care. Healthcare insurers (i.e., BlueCross, United Health Care, Humana, Medicare, etc.) have negotiated rates for each procedure and service which healthcare professionals provide. These negotiated rates are far below the billed rates that the medical field charges for the services. That is, an office visit to a family doctor charged at $150 may be paid by the insurance company at a set rate of $50. Therefore, to better make medical practice monetarily feasible it is not uncommon for a physician to cover their office overhead, staff, equipment, insurance and needed salary expense to schedule three patients in every 15 minute time slot. The doctor‐patient exchange for each visit is now limited to a maximum of five minutes. This is one example of why the traditional image of the expert, caring physician examining the patient, providing explanations, treatment, and comfort now are rarely encountered.
In addition to these many outside factors creating a potentially conflicting environment for the practice of medicine, it is widely documented that doctors today practice in a climate of fear rather than trust (Gold, ; Saunders, ). They fear patients’ retribution and insurance companies’ refusal to allow treatment or pay incurred costs (Gold; Yee, ). In turn, several states passed laws limiting how much can be sought in malpractice lawsuits (Saunders). In 2009, the United States Secretary of Health and Human Services, Kathleen Sebelius, urged the American public that in seeking healthcare they must constantly re‐examine their assumptions about their doctors’ offered treatments (Harris, ); reports also reveal that many doctors use falsified credentials (Hill, ; Lyons, ) and practice with suspended licenses (Jones, ). Therefore, adults must increase responsibility for their healthcare by proactively evaluating assumptions, gathering and analyzing available information that would assist them in making informed health care decisions. Yet, few healthcare or educational professionals provide direction or models of viable solutions
This article addresses these issues through an autoethnographic study of an individual navigating the complexities of several medical issues, including chronic pain, and her approach to healthcare decision making. In this research, SDL (Self Directed Learning) is the framework for examining the healthcare experiences which span a period of ten years. The focus is to explore whether SDL strategies were used in a chronic pain healthcare journey to transform traditional passive patient behavior to proactive responsibility and action.
Literature Review
Self‐Directed Learning
The literature has developed over the years to describe self‐directed learning (SDL) in many ways and in many contexts (e.g., formal, informal, lifelong learning, etc.; Merriam, Caffarella, & Baumgartner, ). A widely referenced definition of SDL from Brockett and Hiemstra ( ) focuses on the central and primary role of individuals in their learning. Self directed learning includes choices and actions regarding the means and timeline for identifying a topic of learning, gathering information, deciding what is relevant, analyzing new information, forming new understandings by determining analyses, interpretations and applications. Taylor ( ) accurately identifies a frequent distinction in the SDL discussions among the process of SDL and the learner's personality. This paper addresses the process of SDL.
Part of the SDL discussion over the years has been whether self‐teaching and self‐directed learning are synonymous. Indeed Candy's ( ) work and others (for example, Silen & Uhlin, ) clearly demonstrate self‐directed learning within formal educational settings. Others demonstrate that self‐teaching is a frequent element of SDL for people in specific settings or circumstances (Miflin, ). The context of self‐directed learning in this study is one of independent learning, rather than that of having an instructional guide.
Social Norms and Social Justice
The second major area of literature to be considered emerges from the context of the autoethnography research method in this study: the inherent struggle of questioning or contradicting culturally ascribed norms and authority. Social norms are best described as the specific rules a particular society “expects” individuals to follow in different situations. Social norms are collectively determined and enforced. However, their enforcement may be explicit or implicit. In some cases, one does not know a social norm has been transgressed, except by the withdrawal of support or communication of others. In other situations, a straightforward reprimand will be immediately delivered when social norms are transgressed. (Mead, )
In the context of this study, the social norms of interest relate to the doctor‐patient relationship and the role of the patient in their healthcare. For most of modern history, patients have left all decisions regarding their healthcare to the medical experts whom they implicitly and completely trusted. To do otherwise, would be to insult the medical professional and risk termination of treatment, as well as reprimand by one's immediate social circle.
The work of Kohlberg ( ), described the process by which individuals navigated moral judgment. Building upon the work of Piaget ( ), Kohlberg's model expanded the timeline of moral development beyond childhood years and determined that four major areas were included. His four stages included the development of understanding of justice, rights, equality and human welfare, while Gilligan's ( ) research yielded a greater understanding of the interplay among moral judgment, caring and social norms. Specifically, Gilligan compared moral judgment decisions among males and females and found that social expectations/norms resulted in conditioned behaviors and therefore different choices/options between the genders. A major contribution of Gilligan's work has been that caring is now included as a critical element of moral judgment development. Extending this finding to the present study, not only will genders have different responses to the conflicts faced in medical decision making, but the social norms regarding the doctor‐patient relationship and the authority of healthcare providers will influence the choices patients make.
This latter issue is reminiscent of the social justice work of Freire ( , ). While Freire advocated for oppressed street people and others without literacy skills and/or political voice, the frameworks of social justice and radical pedagogy aptly inform our understanding of the patients who are increasingly oppressed by decisions about their healthcare made by others. The decisions of insurers to limit treatments and reduce payments to doctors, and by malpractice insurance companies to continuously increase rates greatly contribute to the lack of time, treatment, information, and advice patients now receive. Control of healthcare decisions has been reassigned to corporate entities, no longer decided in doctor‐patient consultations. Both physicians and patients experience the oppression of these companies and agencies. Just as Freire recognized the need for new skills for empowerment of the oppressed in literacy concerns, the USA healthcare climate requires empowerment and new skills of all adults regarding their medical care.
Research Method
In this study, a qualitative autoethnographic research model (Chang, ; Ellis, ) reveals a SDL experience of coping with the challenges of navigating healthcare solutions. Having developed as an alternative form of ethnographic research within the field of anthropology, autoethnography has been increasingly used in sociology, communications, and education (Ellis, ). Common data collection tools in autoethnographic studies include journals, photographs, recordings, documents, memoires, and interviews (Ellis, ). There are many ways to pursue and present autoethnographic research which may lead to rich discovery of life experience.
Among the benefits of the autoethnographic lens and method particularly applicable to the study of SDL are the abilities to develop new understandings of ourselves and move beyond our prior interpretations. Self‐reflection is a major function of participant‐researchers in recording current experiences and considering past experiences, their roles and perspectives (Chang, ). Moreover, this self‐reflection must be done simultaneously and from different vantage points or lenses. The complex self‐reflection of autoethnography cultivates new perspectives of prior experiences, which may not have otherwise surfaced.
Also, it is interesting to consider how autoethnography includes self‐directed learning, because of the primary role of self‐reflection in data development and analysis. In this study, the subject includes the foundation of the research method (i.e., self‐directed learning research about self‐directed learning).
Participant
The participant in this study is a white female who was diagnosed with severe degenerative disc disease in her mid‐ forties (2003) when severe neck pain rapidly progressed to partial paralysis. The first seven years of treatment was provided in the northeastern United States, while the last three years of this study was conducted in a southeastern state. Tabledocuments her medical history pertinent to this study.
She is highly educated having earned a doctoral degree, and has extensive medical background and experience given her family background and early career and academic pursuits. In her youth and teenage years, she was the primary caregiver and medical decision maker for her mother, who experienced diabetic shock frequently. In addition, she held numerous jobs in the healthcare field in her teens and young adulthood as she pursued a degree in the Biological sciences. In her early years of teaching in higher education, she taught many courses including Anatomy and Physiology, Medical Terminology, Medical History and Chemistry. This personal, educational, and professional history is important in understanding that the participant may approach the context of personal healthcare with more technical information and empowerment than average Americans.
Regarding social norms, the context of this study includes the cultural values and understandings of a female adult born in the USA in the 1950's regarding the nature of the medical profession and how to interact with physicians and other medical providers. More specifically, the data covers the period of 2003–2013 as this individual with severe physical needs must navigate a medical healthcare system which continues to experience great change, controversy and shortcomings.
Data Collection
Just as the use of varied data collection formats in autoethnographic research are described by Chang ( ), I used a several means to generate these data: personal and medical journals, focused writing for several articles about holistic medicine and learning (King, , ), for an adult learning article, and now this paper. Moreover, journals were kept throughout illness and treatment (currently totaling four volumes). The personal and medical journals served not only as records of doctor visits, treatment plans, and medical results, but also as a means to organize the disparate sources and information, and cope with the frustrations and struggle of chronic pain, fear, and discouragement. The process of writing (Elbow, ) about the experience in preparation for and in actual publications, are also vital contributors to the SDL meaning making.
Analysis
Qualitative data analysis of the several data sources included constant comparison of themes to determine patterns (Creswell, ). The many sets of data were analyzed individually and then collectively reviewing them for individual and aggregate themes and patterns with data reduction (Onwuegbuzie, & Teddlie, ). Data displays (Onwuegbuzie, & Teddlie) and timelines were created to discern any patterns among events, decisions, treatments and/or conflicts. An iterative process of constant comparison continued until the data analysis was saturated. Strategies, clusters and patterns emerged which helped in organizing the themes conceptually and, occasionally, chronologically.
Findings: SDL Process and Strategies
The evidence collected from the journals, reflections and records reveal that the participant used strategies of self directed learning skills to identify resources, consider alternatives, discuss options and advocate for treatments. In addition, in this individual's experience there was a sequence of development from self‐awareness, to self‐advocacy and self‐agency to navigate the healthcare process.
There are several different vantage points from which this healthcare journey may be viewed. A chronological view walks one through the events, conflicts and learning as they occurred. Thematic views illustrate the development or patterns of one particular theme from the data set or sets. In examining the data for this study both perspectives are necessary for the reader to understand the journey and the SDL process. During data analysis, initial data displays and timelines were created to discern any patterns among events, decisions, treatments and/or conflicts. This section presents composite graphical and tabular representations of the process, and different themes of the SDL process.
Process: Discovering Empowered Healthcare Choices
Figure depicts an overview of the pervasive dilemma identified innumerable times throughout these data. The six stages progress from the top (12 o'clock position) through the full circle. Each stage describes what the participant did in responses to presented healthcare conditions or conflicts. SDL strategies which were evident in this journey of chronic pain included self‐planned learning, inquiry method, self‐education, self‐instruction, self‐teaching, and self‐study (Knowles, ). The names of these strategies will be identified throughout this section of the Findings.
This cycle typically initiated when the patient recognized the limitations of the
physician. In the case of this study, this meant that the doctor did one of the
following: Provided inappropriate treatment, Presented inaccurate diagnoses, Failed to provide any or sufficient answers to her questions, Provided inaccurate responses to her questions, Ignored or trivialized the symptoms she shared, or Intimidates the patient.
The journal data reveal that the patient recognized inappropriate treatment
and inaccurate diagnoses, based on her observations of frequent treatment of her
condition and healthcare protocol . [Self‐education] For example, several
times new doctors prescribed multiple medications without conducting a physical exam
or considering her existing medication regimen. Issues regarding patient questions
were among the most common stimulants of changing physicians. The journal describes
the dialogue when a doctor refuses to provide sufficient answers regarding the
neurosurgery he insists is urgently needed and intimidates the patient.
Patient Have long term trials been conducted on these artificial discs? Doctor Yes they have. Patient How long term have the trials been? Doctor Very long. Patient Exactly, how long term have the trials been? Doctor Very long. Patient Specifically, how long term have the trials been? Doctor The trials have been as long as six to nine months. Patient Do we know if the body will reject the artificial discs? Doctor The trials have been long and never rejected them. Patient What other surgical or nonsurgical options are there? Doctor There are none. Patient What other surgical or nonsurgical options do you and your office
provide? Doctor None. The nurse will sign you up for surgery next week. Patient I need longer to think about it. Doctor There is no time, you need these replaced. It is the only option. Patient I want to seek a second opinion. Doctor You don't need a second opinion. I am telling you the nurse will sign you up
for surgery next week.
For patients suffering from chronic pain, the doctor‐patient relationship is especially difficult. The widespread abuse of prescription pain killers, as well as stiff law enforcement and sanctions against doctors who overprescribe (Current Science, 2012; Phillips, In Press), create an antagonistic environment where doctors assume chronic pain patients to be drug seeking. Another result of this situation is that doctors ignore, dismiss, and/or trivialize symptoms of chronic pain patients. Evidence of this lack of trust in patient claims is the efficacy of a second person's witness to their severe and/or persistent pain, or changes in their behavior. Once an advocate speaks to physicians, they often begin to legitimatize the complaints and take action. This participant had to resort to the external advocate strategy several times throughout the ten years of treatment. [Self‐education]
From the Journal
It is humiliating to realize the Dr. ____ will not listen to me. But if I bring in my partner then suddenly things begin to happen. Do doctors think we love to complain? Are they deaf to us? Why does a different person speaking about MY pain make it legitimate?
Recognizing Physician Limitation and Seeking Different Doctors
The cycle demonstrates our participant becoming sufficiently frustrated with insults, lack of respect and responsiveness, poor treatment, etc. that she would eventually begin to investigate options of having a new physician. In cases when there was an established doctor‐patient relationship, this decision was resisted by deeply engrained social norms of loyalty to one's physician. Based on the belief that the “Doctor knows best.” The decision could only be executed once patient treatment had become a persistent, frustrating, and increasingly painful pattern.
One would think that over the ten years this decision to switch doctors would become easier for the patient, but it did not. This excerpt is from an incident that occurred in the ninth year.
Patient He won't listen to me. It's been eight months of the same thing. I need
him to treat the pain in my knees. It is excruciating. Partner He doesn't listen to you. Maybe we need to switch doctors. Patient But he has done so much for me. I trust him. I can't bail on him.
In this particular case, the patient only switched doctors once she had an unrelated accident and a surgeon told her she had been misdiagnosed for nine months and under treated for two years. She needed the authority of another physician to sever the strong social norm of doctor‐physician loyalty even though she was enduring debilitating pain.
Seeking Information and Treatment Options
In the accounts of this journey with chronic pain, a frequent activity of the participant is seeking information and treatment options. These actions are critical elements of self‐directed learning and many people today use the Internet to search for health information. This individual used several sources to guide her search for information: credible medical web sites, professional association web sites, and specialty medical research sites. [Inquiry method, self study, self‐planned learning] Early in her journey, she visited discussion boards where people with similar conditions posted questions and answers, shared experiences, and sought peer support. However, the idiosyncratic nature of the conditions, as well as the lack of authority or documentation for offered advice compromised the value of these sources in her quest for valid information. [Self‐planned learning]
Persistent Informed Decision Making
Her persistent informed decision making manifested in strategies for choosing physicians and treatments. One paradigm that she developed in about the second year of the journey and about the third doctor was to look for physicians who had more that one treatment option to offer chronic back pain patients. Many doctors were eliminated from consideration after one visit when they revealed that they had a single treatment to solve all back pain. The oversimplification of this approach frustrated her given the extent of her experience of failed attempts with different treatments, her scientific training, and independent research. Instead, she sought skilled doctors who would listen to her symptoms and develop multiple plans of action/treatment that could be used if one failed. [Inquiry method, self education]
Implement Instructions
In year nine, this paradigm was extended to include characteristics of doctor‐patient relationships. Not only were the multiple approaches needed, but respect of patient complaints and explanation of treatments and instructions were considered essential traits for her physicians. The latter element was especially important in her being able to fully implement instructions pre and post treatments. [Inquiry method, self education]
This discussion of Figureprovides a comprehensive view of the cycle of questioning, information seeking and persistence which the participant followed for ten years. One measure of the prevalence of the issues and the frequency with which this cycle was applied is that the participant visited over 60 doctors in that period of time.
Themes of Self Directed Learning
Another analysis conducted in this study developed a detailed chronology of symptoms, diagnoses, conflicts and learning. Doing so revealed several patterns. Tablelists the themes (and corresponding codes), the order of their occurrence (column 1) in the journey. These learning themes include both attitudes (non‐highlighted) and actions (highlighted). In addition, the frequency of the themes as listed in the chronology is indicated in the third column. A further pattern emerged in that the later themes were used less frequently than the early themes. Therefore, many of the early learning themes persisted through the journey.
Retrospective Observation
The impact of recent health crises with a loved one in December 2012 and writing this article has helped me realize that I have developed another SDL strategy through this journey with chronic pain. Now, when I choose a new doctor, I do not solely rely on recommendations from a referring physician. Instead, before making an appointment, I access and evaluate reputable online resources to review potential physicians’ state records, credentials and patient reviews. In addition, during the first few appointments, I consider whether doctors conduct full physical exams, demonstrate patient respect in listening and speaking, answer questions, and provide sufficient information about potential treatment plans. My assessment of doctors’ professional expertise, as well as communication and interpersonal skills help determine whether indeed there is a good doctor‐patient “fit”.
Discussion
Looking at the larger view of the patient's role in the healthcare system, this study reveals that the ever changing challenges to our health care systems make SDL paramount in navigating ones own healthcare. Individuals can no longer rely upon the antiquated social norm of “the doctor knows best”. This account reveals that the participant used SDL strategies to become a critical consumer of several different aspects of healthcare services. Guglielmino's ( ) work further confirms the existence of SDL in these data. Tablecompares the characteristics of persons employing SDL revealed in Guglielmino's research to the account presented in this study.
In the case of SDL and healthcare navigation, first and foremost is the need to obtain pertinent information regarding individual needs. Accurate medical information can be readily available through a multitude of medical professional Internet sites. Equipped with information that they understand, they need to find physicians who will respect them and discuss their treatment options. The ability to make informed healthcare decisions for ourselves can no longer be relegated to the physician alone. Instead, the patient needs to be involved in the decision process and be willing to turn away from poor professional advice or behavior when encountered.
In addition, this study demonstrates that a chronic pain patient can obtain needed healthcare and treatments when she persistently utilizes SDL skills and overrides social norms. However, it also reveals that few physicians or medical practices encourage self education and fail to discuss treatment options with them. While some medical practices have medical information available in waiting rooms (i.e., pamphlets, videos), few patients seem to access it at this time. In part, their expectation may be that, like the participant, such literature is produced by pharmaceutical companies for marketing purposes. The new wave of health education needs different delivery modes for patients to notice and utilize it. In addition, these materials need to be written in accessible language, include accurate content, and be funded by organizations independent of healthcare investment.
The impetus to adopting SDL in healthcare situations is certainly a personal choice; therefore, mainstream cultural change could be slow. The contradiction to this slow trajectory is the crisis of healthcare currently being experienced in the USA: the atrocious errors yielding large lawsuits, and poor treatment of patients. Considering Gilligan's ( ) insight on caring and moral reasoning, the patient exercised more care regarding physician loyalty than her well being. As conditions worsened and/or this individual had to encounter the system many times, she finally broke with social norms and appropriated her SDL skills to make an informed decision of self‐advocacy.
Social justice is of great concern in this adoption of SDL skills for healthcare purposes. Just as the field of adult education has recognized the limitations for empowerment of persons with low or no literacy skills in political (Freire, ) and economic realms (Alfred, ), the same is true regarding healthcare treatment and informed self‐advocacy. Low literate individuals will find the transition to SDL and self‐advocate in healthcare areas very difficult alone because of the technical context. Currently, patient advocates are only available through social work networks or hospitals. Those individuals seeking office and out patient treatment do not encounter such support and must rely solely on the doctor, friends or family.
Directions for Future Research
Additional research in the area of SDL in USA personal healthcare education and empowerment is especially needed given the continued control of medical decisions by corporations and agencies. While this autoethnographic study explores one person's extensive experience with healthcare providers and the challenges to find responsible and responsive care.
Specific topics for this SDL research may include (1) exploring the similarities and differences of patient experiences of SDL, (2) examining the differences of SDL in healthcare across educational and literacy levels, and (3) conducting large studies to determine patterns across various demographic, personality, or learning style variables.
Study Limitations
At least three limitations of this study result from the single sample and the research method. First, different people have unique personal histories, personalities, learning preferences and learning styles. Therefore the specific SDL strategies revealed in this study may not be the best choices for all people. Additional research can provide direction for more generalizable recommendations. Secondly, given the unique personal, educational, and professional history of the participant, she has more information and empowerment than most Americans in approaching medical emergencies, understanding technical information, and navigating the healthcare system. Thirdly, many of the issues for which the participant sought treatment were related to chronic pain. Given the enduring public controversy (Phillips, In Press) about abuse of medications in this area, “chronic pain patients” may encounter more difficulties in the healthcare system and disrespect than others. These limitations need to be investigated in further studies.
Conclusion
This study and discussion are especially significant as we recognize the power of SDL across our culture and the specific lifelong learning context of healthcare. With the multiple demands of decreased dedicated medical care and an increased health needs in an aging society, there is a great need for new models of responsibility for personal healthcare. The paradigm of self‐directed learning holds great promise if introduced in ways that will support mainstream adoption in the lifelong experiences of personal healthcare.
Individuals utilizing SDL to gather factual healthcare information, and using it to make informed decisions, have the potential to be self‐advocates in a system which no longer serves their needs first. The present time may be “a perfect storm” to encourage individuals to become more self‐directed learners and self‐advocates when interacting with the healthcare system. We cannot depend on the system to teach the skills; instead individuals either need to develop them or seek those who will advocate for them.