A Survey of Patients’ Experiences with the Cancer Genetic Counseling Process: Recommendations for Cancer Genetics Programs

In order to promote ongoing quality improvement of not only the Penn State Cancer Genetics Program, but also other cancer risk assessment programs throughout the country, we developed, piloted and conducted a survey to explore patient expectations, experiences, and satisfaction with the cancer genetic counseling process. The comprehensive survey was mailed to 340 eligible patients, 156 (45.9%) of whom returned the completed survey within the allotted time. Responses to closed-ended questions were tallied and open-ended questions were content analyzed. Major findings show that: (1) Patients were seeking cancer-related information and support throughout the cancer risk assessment process and were interested in participating in available research studies; (2) The setting in which patients are seen for cancer risk assessment may pose potential emotional ramifications; (3) Misperceptions regarding insurance discrimination and lack of insurance coverage persist; (4) Patients view the genetic counselor as responsible for updating them about new discoveries. Specific recommendations for cancer genetics programs are included.     

Physicians' Silent Decisions: Because Patient Autonomy Does Not Always Come First

Physicians make some medical decisions without disclosure to their patients. Nondisclosure is possible because these are silent decisions to refrain from screening, diagnostic or therapeutic interventions. Nondisclosure is ethically permissible when the usual presumption that the patient should be involved in decisions is defeated by considerations of clinical utility or patient emotional and physical well-being. Some silent decisions—not all—are ethically justified by this standard. Justified silent decisions are typically dependent on the physician's professional judgment, experience and knowledge, and are not likely to be changed by patient preferences. We condemn the inappropriate exclusion of the patient from the decision-making process. However, if a test or treatment is unlikely to yield a net benefit, disclosure and discussion are at times unnecessary. Appropriate silent decisions are ethically justified by such considerations as patient benefit or economy of time.     

Requirements and Implementation of Maintaining Patient Records

Summary

This article will discuss the need for psychotherapists to document the statements of patients, the techniques they use, and other aspects of their work to avoid ethical and legal problems. Elements of session notes and written informed consent will be identified. No informed consent can legitimize some actions and they will be addressed.     

Patient Adherence With Medical Treatment Regimens: An Interactive Approach

Inadequate patient adherence to treatment regimens is a ubiquitous problem in health care and carries a profound personal, societal, and economic cost. This article illustrates a general theoretical framework we believe to be useful for the interpretation, conception, and design of adherence research. The core tenet of this framework is that factors that influence adherence can be better understood by considering the interactive effects of patients' characteristics, type of adherence intervention, and characteristics of the illness and medical treatment context. This framework represents an extension and application of previous theory and research from personality, social, and clinical psychology concerning the value of an interactionalist perspective. We illustrate the framework using some of our past work involving treatment adherence among patients with chronic renal failure.     

Guidelines for Writing Letters to Patients

Patient letters provide a permanent record of the genetic counseling that was provided and are unique in medical care; rarely do other health care providers send summaries written specifically to their patients and families. We surveyed genetic counseling training program directors and found that while the acquisition of patient letter-writing skills was considered important, there were no specific guidelines made available to students. To develop letter-writing guidelines, we evaluated patient letters, reviewed references on professional correspondence, surveyed the medical literature, and worked with a writing consultant. The guidelines we subsequently developed and present here include a format for writing patient letters, suggestions on presenting medical information in understandable terms, and wording considerations. These patient letter-writing guidelines are intended to serve as a guide for teaching students this important skill and as a resource for practicing health care professionals.     

Therapist responses to requests for disclosure of therapeutic records: An introductory study

This paper describes a questionnaire survey of therapists in the UK who have been subject to requests for disclosure of client records as part of a legal process. Therapist responses are outlined in terms of the perceived effect of such disclosure on the client, therapist and the therapeutic relationship. Negative effects included the experience of exposure of sensitive client material in an adversarial legal system, of powerful emotional responses by therapists, and a sense of feeling professionally de‐skilled in an unfamiliar and often challenging legal environment. Positive effects for the client included the achievement of valued outcomes such as compensation, and, for the therapist, the facilitation of support for the client in this process. These findings are discussed in terms of a contrast between therapist perceptions of consensual and contested disclosure. In the former, therapist and client are in agreement about the restorative value and outcome of disclosure. In contested disclosure, the process is experienced as disrupting therapeutic privacy, undermining professional self‐confidence and introducing an unwelcome element of critical re‐evaluation of client motives for undertaking therapy.     

Genetic Counselors' Judgments of Patient Concerns: Concordance and Consequences

The aims of this prospective study were to determine (a) the concordance between patient concerns and genetic counselors' judgments of these concerns, (b) the predictors of patient and counselor judgments, and (c) the relationship between concordance and patient outcomes. Patients' and counselors' views were sought before and after 131 routine genetic consultations. Before consultations, there was concordance about level of patient concern to within one point in 63% (82/131) of consultations and about type of patient concern in 60–84% of consultations. Lack of concordance in judging level and type of concern was associated with lower satisfaction with information and higher anxiety after the consultation. The biggest predictor of counselor judgment of concern was professional background: doctors judged patients to be more concerned than did nurses. Concordance of concern was predicted by counselors' experience in genetics: less experienced counselors overestimated patient concern. Future research needs to determine whether improving judgment of concern improves patient outcome.     

Depth of Field: Using photographs and narratives to explore and reflect on ageing

The learning landscape of the higher education environment is changing, with an increased focus over the past decade on how educators might begin to cultivate reflective skills in health professions students. In addition, changing professional requirements demand that health professionals are adequately prepared to practise in today’s complex healthcare systems, including responding to changing demographics of population ageing. In this educational case study, we will share how we (a group of education, medical and nursing academics) developed ‘Depth of Field: Exploring Ageing’ a digital, consumer-driven, interprofessional reflective learning resource that uses photographs, narrative and small-group work to strengthen reflective capacity in current and/or future health professionals.