Conclusion: the "given" and "therefores" of clinical oncology and medical errors

Antonella Surbone1 and Michael Rowe2

1 Department of Medicine, New York University, New York, USA 2Department ofPsychiatry, Yale School ofMedicine, New Haven, USA In this volume, together with our contributors, we have examined medical errors in oncology from a number of perspectives that require no summing up here. Rather, we wish to briefly review the conceptual and practical implications of our authors' contributions and suggest future directions for practice and research that may contribute to reducing medical errors, enhancing patient safety, and addressing repercussions of medical errors on patients, family members, and oncology professionals.

Our contributors, implicitly or explicitly, have at times gone beyond the standard definition of medical error as patient harm caused by the "failure of a planned action to be completed as intended or the use of a wrong plan to achieve an aim." [1] Their accounts and analysis, taken collectively, have included broader aspects of patient suffering caused not only by medical errors themselves but also by the arrogance that underlies or accompanies silence as a response to errors - the failure to disclose errors empathically - and the suffering related to errors that may continue for years past the medical event. Some have specifically addressed the subjective repercussions of medical errors on oncologists, nurses, and other members of the cancer team. Some have shared or alluded to personal accounts of their own experience as cancer patients and survivors, thus shedding a different light on the discussion of even the most technical aspects of medical errors in clinical oncology.

In closing out this account we choose to look at some recurrent themes of what we are calling the "givens" and "therefores" of medical errors in oncology in the areas of the nature of oncology care and the experience of patients and oncologists; disclosure of errors; and training, education, and research. The "givens" - the context of medical errors in oncology and medicine as a whole - have been covered or implied elsewhere in this volume. The "therefores" - contributions to patient safety and reduced medical error that oncology can make in its own domain and clinical medicine writ large - require some additional considerations here. Although many aspects of patient safety are common across diseases, errors and adverse events have important specialty-specific dimensions. The special contribution of oncology to addressing medical errors both in its own house and in medicine as a whole stems directly from, and is a response to, the special challenges and difficulties it faces due to the nature of cancer itself and its treatments. [2]

The nature of oncology care and patient and oncologist experience in regard to errors The use of experimental anticancer protocols and multiple medications that often, carry a high toxicity, along with the multidisciplinary nature of most cancer treatments, can render more difficult the oncologist's assessment of whether an adverse event is a side-effect of treatment or the result of medical error. This is especially the case when early-phase experimental treatments are used. Further, in both clinical and experimental oncology, numerous checks at various levels are put in place to prevent errors, but the cancer patient's exposure to multiple interactions with different physicians and nurses on multiple specialty teams may also contribute to errors due to fragmentation and complexity of care. A high degree of medical uncertainty still surrounds cancer prognosis and treatment efficacy, and the implications of this uncertainty may, in turn, extend to whether a medical error occurred. Therefore oncology, in "pushing the envelope" of risk to patient safety and of medical error, can take a leadership role in defining high risk areas of care and identifying effective individual, team, and system responses. [3]

The process of cancer diagnosis and treatment is varied and complex. An initial diagnosis of a small cancer with good prognostic factors, accompanied by the reassurance that it will likely not recur after removal or adjuvant treatments, may be followed by the patient's effort to return to normalcy with the hope of being cured. Yet early or late relapse may occur, involving further interventions, complications, and additional interventions with short and long-term sequelae. During such a process, patients struggle to maintain hope and keep searching for the best care with the greatest chance of success. As they become increasingly alert to possible mistakes or other reasons to question the care they receive, patients must become active partners in their care to maximize their safety. At the same time, institutions and individual oncologists and nurses should meet patients' and families' educational needs regarding risks and options in clinical care and support their involvement in a collaborative spirit.

Cancer patients, whether destined to long-term survival or death, are exposed to many sources of physical, existential, and psychosocial suffering. Due to the serious and at times life-threatening nature of their illnesses and to the inherent asymmetry of the patient-doctor relationship, cancer patients may be more vulnerable and dependent on their oncologists than most other patients, and be especially hurt both physically and emotionally when errors or suspected errors occur. For oncology patients, the physical effect of error and the shock of learning about it may be compounded by grief, loss, and a sense of isolation - along with the possible long-term physical effects of error and the stigma of reduced family, social, and occupational roles often associated with the illness. [3] Oncology associations should foster advocacy for cancer patients and the development and implementation of support systems to meet the emotional and psychosocial needs of patients and their families. [4]

Oncologists, who carry emotional and psychological burdens from caring for seriously ill patients over long periods of time, can be deeply affected by their own mistakes. [5] Many have difficulty accepting medical uncertainty in prognostication and risk assessment, as well as regarding the efficacy of therapies in individual patients, and perceive poor treatment outcomes as personal failures. As a result, they may withhold information about errors or deliver it in a blunt, insensitive manner, due to the fact that they are not trained to regard caring itself, not only curing the patient, as a core value of the profession. In addition, coping with emotional distress can be especially challenging for oncologists, who experience high rates of burnout syndromes because they care for sick patients over time, with mortality always at the forefront. Such distress may lead oncologists to inadvertently minimize the impact of an error in a patient with advanced cancer or, on the other hand, experience a heightened sense of personal responsibility for increasing the suffering of their patients. The complexity of oncology care and the stress of witnessing the physical and existential suffering of cancer patients on a daily basis can make it difficult for oncologists to find a balance between an excessive sense of responsibility for the suffering and dying of their patients and an overwhelming sense of impotence that leads them to believe, or to grab at the straw of the excuse, that no medical mistake really matters in the face of advanced stages of cancer. [6]

Clearly, there is a void to fill in designing and implementing effective, safe, and structured support measures for oncology professionals who have committed, or contributed to the commission of, a medical error. Support should be aimed at shifting oncologists' responses to errors from being a source of blame, guilt, and shame to that of being an occasion for humble learning in putting their patients' safety first, without retreating behind the cover of personal failure.

Disclosure In disclosing medical errors it is essential for oncologists to attend to both medical and emotional aspects of information provided and reactions they elicit from patients and families. Most oncologists lack proper training in communication skills and believe that full disclosure may prevent them from maintaining hope with their patients. In certain cultures, oncologists still make paternalistic unilateral decisions to protect their patients from painful medical truths. [7] Even in Western contexts, oncologists' optimism may translate into excessive reliance on continuing chemotherapy or other cancer treatments even when patients would most benefit from palliative care that is attentive to the patients cultural and personal beliefs.

Disclosing and discussing medical errors in clinical oncology requires special communication and interpersonal skills that can be taught and learned, with full understanding of oncologists' difficulties in dealing with ambiguity and fallibility, their fear of blame by peers, and litigation by patients or families. Most medical error disclosure guidelines address clear-cut harmful errors. In oncology practice, multiple active and latent errors may occur at individual and system levels, making it difficult to apply existing disclosure guidelines. Oncologists thus face several decisions about which events to disclose, the goals of disclosure, or the extent of disclosure. In addition, oncologists must confront special challenges regarding errors in clinical research. Decisions about if, when, and how to disclose oncology errors are inextricably linked to the clinical context in which these errors occur. [3, 8] A clinical error is not only about simple facts, then, but also about the complex meanings that every fact acquires when it is contextually lived and interpreted by the patient or the physician. Oncology professionals, for example, may find it difficult to decide whether or not to disclose a medical error when their patient's prognosis is dismal. In such cases, they may see disclosure as 'useless' or 'cruel', or leading only to a bitter ending of the patient-doctor relationship. [3]

While oncologists may be tempted to rationalize away some errors or to question the need to disclose them to patients, they are also well positioned to instruct the field and medicine as a whole in the difficulties and the aftermath of disclosure of medical error. Even in the most difficult cases, including the need to or point of error to a patient with little time to live, and even in the absence of a permanent damage due to the error itself, oncologists should always consider the ethical value of full disclosure and avoid the temptation to justify partial or nondisclosure. [3]

Oncologists' failure to disclose medical errors to their patients betrays the fiduciary nature of the patient-doctor relationship and diminishes the integrity of the oncologist and the profession. [2] Non-disclosure represents not only a poisonous silence on the part of the oncologist, but an effective silencing of patients and family members by withholding information and dismissing their experiences, [9] while obfuscating already difficult efforts to learn more about the occurrence of medical errors in oncology and how to prevent them in future cancer patients.

In many cases, silence or inappropriate communication stem from, or amount to, arrogance on the part of the oncology professional. Whether or not such arrogance may be a reaction to guilt or a form of defensive medicine, it is a violation of the patient-doctor relationship in that the doctor must recognize the patient as an equal individual with inherent dignity and worth. [10] Arrogance can be individual or institutional, or both. In all instances, it undermines the essence of medicine. [11] On the contrary, by communicating with humility and empathy to patients the seriousness of their cancer diagnosis and formulating its prognosis, or disclosing an error, oncologists can draw on the creative power of the reciprocal trust already developed in their relationship with the patient. Patients and their family members can thus know that honest dialogue and true cooperation will take place throughout the course of the illness and feel reassured that they will not be left alone to cope with the hardest truths, including those about medical errors. Finally, at a time when clinical encounters are often framed in terms of a transaction between provider and consumer, there is a place, and a need, for medical forgiveness in a humanistic and spiritually redeeming sense for all partners involved in a medical error.

Oncologists must attend to both medical and emotional aspects of error disclosure for patients and families. The physician's response must be clear at the clinical level and also address the emotional needs of patients and family members, in order to maintain or restore their trust in their doctors and other members of the oncology team. When an error is not disclosed properly and empathically and the error subsequently comes to light, the cancer patient may further suffer from the oncologist's failure to admit the error with humility and a sincere apology.

Education, training, and research Didactic and experiential education and training of oncologists on empathic and accurate communication throughout the course of the patient's illness, including disclosure of medical errors, should be enhanced and provided throughout medical education, from medical school through internship, residency, and fellowship, and offered to senior oncologists as part of their continuous medical education. Emphasis should be placed on the importance of reporting errors immediately and openly to other team members and promptly engaging in all measures that could mitigate or prevent their harmful effects. Emphasis should also be placed on the redemptive value of apology and forgiveness for all parties, on provision of emotional support for patients and family members affected by medical and on getting support for oncologists involved in medical errors. Education and role modeling should also foster oncology professionals' sense of personal accountability in the face of the high risks inherent in caring for cancer patients.

Full disclosure of medical errors to patients, based on respect for their autonomy, may at times clash with cultural rules that favor silence over truth telling to cancer patients. [12, 13] This is a major source of clinical and ethical dilemmas for oncology professionals who care for patients of different cultures being treated at Western institutions. Family members may request that these patients be kept in the dark about their diagnosis or prognosis, or told half-truths. The proper means of handling such situations remains a matter of intense debate and a quandary for oncology professionals. Yet, even so, we must strive to foster our patients' autonomy while respecting their cultural values and norms. [12, 14] Striking a balance between these two ethical tenets of clinical medicine may be especially difficult, however, when disclosure of an error is involved. Difficult as it is to negotiate a proper balance between patient autonomy and cultural values that conflict with it, oncology professionals must remember that all such conflicts are mediated through the relationship that they establish with their cancer patients relationship. This relationship remains our best, if an imperfect, guide for steering the course of care, even as we continue to learn from practice and research about new tools and methods for addressing the clash of contradictory values and mores.

We believe that in light of their experience dealing with patient-physician communication in complex, uncertain, and life-threatening clinical situations, oncologists can contribute to developing strategies and recommendations or guidelines for response to, and disclosure of, medical errors that may also apply to other clinical specialties. [1] Oncology can also play leadership roles in research on the impact of sociocultural factors on quality of care, including medical error reduction, and disclosure. For example, cultural, racial, and gender factors may affect clinicians' attitudes and practices toward medical thus we need to determine if in caring for minority or underprivileged patients, we are less likely to disclose errors to them and their families. Conscious or unconscious biases up to discrimination have been reported with regard to the extent of information provided to cancer patients of different cultures, ethnicities, and socioeconomic status, and these need to be explored also with regard to error disclosure. [15, 16] Honesty about the incidence and the consequences of medical errors in the setting of "poverty medicine" [17] should be fostered and sustained by feasible clinical practices.

Such considerations apply, of course, in all areas of medical care. In clinical oncology, however, the combination of complexity, uncertainty, high patient suffering and mortality, and the intensity of the patient-oncologist relationship may both magnify and make more apparent these critical challenges to providing effective, equal, and respectful care to all people who are suffering. Along with proper assessment of the epidemiology and patterns of errors in clinical oncology and accurate reporting by all healthcare workers, we should continue to study the causes of medical errors in light of new therapeutic developments in clinical oncology, and safety measures to prevent errors in all clinical settings, including home care where anticancer, supportive, and palliative therapies are increasingly being delivered.

As cancer care continues to shift toward a more complex system of healthcare delivery, with growing specialization and potential fragmentation of care, sophisticated technology, and rapidly escalating costs, we need to address the impact of structural transformations and economic pressure on the incidence of medical errors and the factors affecting their recognition. Also, we should further investigate those errors that may occur in the design and conduct of clinical trials with regard to scientific value, integrity of investigators, conflicts of interest, informed consent, and non-discrimination in patients' enrolment. All these elements, while not strictly belonging to the standard definition medical error, have deep repercussions on the clinical practice of oncology. Rectifying ethical and procedural errors in regard to them can benefit oncology and medicine as a whole, and thus patients across all medical disciplines.

To properly address medical errors that may still occur despite our best individual, institutional, and systemic efforts at improving patient's safety, oncology professionals must inform and lead by moral education and example. Discussion of errors as teaching moments should be encouraged also through the use of narratives of medical error with medical students and oncologists in training. We must admit our own vulnerability and advocate for greater access to professional counseling and other sources of support for all clinicians after an error has occurred. Finally, in order to face and address medical errors we must attend to our own well-being, including our mental, psychological, and spiritual health. Keeping connected to close colleagues, family, and friends, and engaged in our communities, are powerful means for maintaining connections to others, and avoiding isolation, in the midst of difficult situations. [18] Nurturing our own well-being can help us cope with the repercussions of medical error on our sense of self and personal integrity, and sustain us in helping our patients through the course of their illness, avoiding the temptation to abandon them emotionally through our silence in the face of medical error.

In closing, we wish to thank all our colleagues who have contributed to this book. We are grateful to them, to all our patients, and to you who have read this book.


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