Dr Charles Douglas

Introduction: Meaningfully explaining the risk of an ionising radiation examination is a challenging undertaking. Patients must contextualise the risk against the expected benefit of the imaging examination, often in a situation of heightened emotion. This systematic review seeks to explore the literature to identify what techniques are advocated for disclosing the risk to patients of ionising radiation from clinical medical imaging examinations. Methods: A systematic review of peer-reviewed literature was undertaken. Electronic databases were searched to identify peer-reviewed, full-text articles published in English from 1990. Original articles discussing techniques for disclosing ionising radiation risks in the clinical setting were included. The reference lists of the included articles were searched for unpublished articles and reports of use. Results: Sixteen papers out of 5959 unique titles met the inclusion criteria. The data was extracted independently by two researchers and assessed for quality using the Joanna Briggs Institute critical appraisal tools. Conclusion: The two most commonly cited techniques for disclosing ionising radiation risk is to compare risk to the risk of common life events, and to describe risk as an additive risk to the baseline risk of cancer. The most commonly cited communication strategy was a graphical representation of the data, but simple language is also advocated. The use of a pictograph represents a technique which satisfied the advocated techniques of most articles.

Introduction: Informed consent for ionising radiation medical imaging examinations represents a recent change to medical imaging practice. This practice has not had a definitive and authoritative integration into clinical practice, and lack of direction has caused many health care professionals to be unsure of an appropriate consent methodology. Consent practices have been undertaken inconsistently and sometimes poorly. This research sought to investigate what barriers exist to meaningful informed consent, and what pathways are suggested to overcome these barriers. These views are then discussed in the context of practical health care consent practices. Methods: A semi-structured interview explored the views of radiographers and radiologists on the practice of disclosing the ionising radiation risk of a clinical medical imaging examination. Qualitative data was analysed using a nominal method of quantitative transformation. Responses were reviewed, and a set of definitive themes constructed. Participants considered the influences, logistics and barriers to the informed consent process. Participants were then asked what pathways might be developed that would improve the process. Results: Twenty-one (21) radiographer participants and nine (9) radiologists were interviewed. The barriers to consent identified issues of time constraints, lack of a unified message, and patient presentations. Pathways suggested included limiting the scope of the consent practice, sharing the consent responsibility, and formulation of definitive consent guidelines. Conclusion: A unified, definitive series of guidelines for informed consent for ionising radiation examinations would alleviate many of the identified barriers. Having the consent process consistently begin with the referring doctor would facilitate more meaningful consent.

Background: Neoadjuvant systemic therapy (NAST)is used for large operable or highly proliferative breast cancers. It is not known whether psychological outcomes differ according to the treatment sequence (chemotherapy or surgery first)or tumour response. Methods: This was a planned analysis of a multi-institutional single arm longitudinal study of patients considering NAST for operable breast cancer. Participants completed patient reported outcome questionnaires before and after the decision about NAST, between chemotherapy and surgery, and 12 months after diagnosis. Results: Fifty-nine women enrolled. Fourteen of 51 (28%)who received NAST experienced pathological complete response (pCR). Patients who had surgery first (n = 7)had higher baseline anxiety, and a greater decrease in anxiety at 12 months follow up, compared with patients who received NAST (n = 50)(a decrease from baseline of 34 pts vs 17 points; p = 0.033). Distress declined at a similar rate in surgery first and NAST groups. Mean satisfaction with decision score post-decision was significantly lower in the adjuvant group compared with NAST (22 vs 26, p = 0.02). No differences were seen between patients with pCR vs residual cancer in: distress, anxiety, satisfaction with decision, fear of progression, and decision regret. Conclusion: Most patients in this study proceeded with NAST when their surgeon offered it as an option. This exploratory analysis suggests that patients who chose surgery first tended to be more anxious, and had lower satisfaction with their decision, than those who had NAST. In patients who had NAST, lack of pCR does not appear to correlate with adverse psychological outcomes.

Background: The perceptions of those called on to make decisions on behalf of patients who lack capacity at the end of life must accurately reflect patient preferences. Aims: To establish the extent to which the views of medical oncology outpatients are understood by their support persons, specifically with regards to (i) preferred type and location of end-of-life care, (ii) preferred level of involvement in end-of-life decision-making and (iii) whether the patient has completed an advance care plan or appointed an enduring guardian. Methods: Adults with a confirmed cancer diagnosis and their nominated support persons were approached between September 2015 and January 2016 in the waiting room of an Australian tertiary referral clinic. Consenting participants completed a pen-and-paper survey. Nominated support persons answered the same questions from the patient¿s perspective. Results: In total, 208 participants (39% of eligible dyads) participated. Observed agreement across the five outcomes ranged from 54% to 84%. Kappa values for concordance between patient¿support person responses were fair to moderate (0.24¿0.47) for enduring guardian, decision-making, advance care plan and care location outcomes. A slight level of concordance (k = 0.15; 95% confidence interval: -0.02, 0.32) was found for the type of care outcome. Conclusion: Relying on support persons¿ views does not guarantee that patients¿ actual preferences will be followed. Strategies that make patient preferences known to healthcare providers and support persons while they still have the capacity to do so is a critical next step in improving quality cancer care.

Introduction: Autonomy is a fundamental patient right for ethical practice, and informed consent is the mechanism by which health care professionals ensure this right has been respected. The ethical notion of informed consent has evolved alongside legal developments. Under Australian law, a provider who fails to disclose risk may be found to be in breach of a duty of disclosure, potentially facing legal consequences if the patient experiences harm that is attributable to an undisclosed risk. These consequences may include the common law tort of negligence. Ionising radiation, in the form of a medical imaging examination, has the potential to cause harm. However, stochastic effects cannot be attributable to a specific ionising radiation event. What then is the role of the Australian medical imaging service provider in disclosing ionising radiation risk? Methods: The ethical and legal principles of informed consent, and the duty of information provision to the patient are investigated. These general principles are then applied to the specific and unusual case of ionising radiation, and what responsibilities apply to the medical imaging provider. Finally, the legal, professional and ethical duties of the radiographer to disclose information to their patients are investigated. Results: Australian law is unclear as to whether a radiographer has a common law responsibility to disclose radiation risk. There is ambiguity as to whether stochastic ionising radiation risk could be considered a legal disclosure responsibility. Conclusion: While it is unlikely that not disclosing risk will have medicolegal consequences, doing so represents sound ethical practice.

Objectives: This study surveyed a sample of medical oncology outpatients to determine (1) the proportion who have already discussed and documented their end-of-life (EOL) wishes; (2) when and with whom they would prefer to convey their EOL wishes; (3) the EOL issues they would want to discuss; and (4) the association between perceived cancer status and advance care planning (ACP) participation. Methods: Adult medical oncology outpatients were approached in the waiting room of an Australian tertiary treatment center. Consenting participants completed a pen-and-paper survey assessing participation in ACP, preferences for conveying EOL wishes, timing of EOL discussions, and EOL issues they want to be asked about. Results: A total of 203 patients returned the survey (47% of eligible). EOL discussions occurred more frequently with support persons (47%) than with doctors (7%). Only 14% had recorded their wishes, and 45% had appointed an enduring guardian. Those who perceived their cancer as incurable were more likely to have participated in ACP. If facing EOL, patients indicated that they would want family involved in discussions (85%), to be able to write down EOL wishes (82%), and to appoint enduring guardians (91%). Many (45%) preferred the first discussion to happen when their disease became incurable. Slightly less than one-third thought discussions regarding EOL should be patient-initiated. Most agreed doctors should ask about preferred decision-making involvement (92%), how important it is that pain is managed well (95%), and how important it is to remain conscious (82%). Fewer (55%) wanted to be asked about the importance of care extending life. Conclusions: Many patients would like to have discussions regarding EOL care with their doctor and involve their support persons in this process. Only a small percentage of respondents had discussed EOL care with their doctors, recorded their wishes, or appointed an enduring guardian. The first step requires clinicians to ask whether an individual patient wishes to discuss EOL issues, in what format, and at what level of detail.

Introduction: For radiographers, gaining informed consent with our patients represents a challenging undertaking. Reconciling the need to gain meaningful consent with time pressures represents one challenge, as does differing expectations of how risk communication should be undertaken. Different methods and thresholds of risk disclosure are considered, with the aim of finding a realistic best practice. Methods: A cross-sectional study of radiographers and members of the public was undertaken. Participants were asked their preferences for how they would like to receive ionising radiation risk information. This included the health care professional(s) most suited to provide the information, the media through which the information was delivered, and the technique for delivering the information. In addition, participants were asked to consider hypothetical scenarios in which they were a patient receiving an ionising radiation examination, and to give the threshold of ionising radiation cancer risk which they would consider material. These scenarios considered variations in the cancer-onset time, and the accuracy of the test. Results: One hundred and twenty-one (121) radiographer participants and one hundred and seventy two (172) members of the public met the inclusion criteria and completed the survey. There was strong agreement in the most appropriate media, and person, to disclose risk, as well as what represents a significant risk. There was considerable agreement in risk delivery technique. However, some of the agreed-upon strategies may be challenging to achieve in clinical practice. Conclusion: Radiographers and patients fundamentally agree upon risk communication strategies, but implementing some strategies may prove clinically challenging.

Background: Neoadjuvant systemic therapy (NAST) is an increasingly used treatment option for women with large operable or highly proliferative breast cancer. With equivalent survival outcomes between NAST and up-front surgery, the situation-specific preference-sensitive nature of the decision makes it suitable for a decision aid (DA). This study aimed to develop and evaluate a DA for this population. Methods: A DA booklet was developed according to international standards, including information about adjuvant and neoadjuvant treatment, outcome probabilities, and a values clarification exercise. Eligible women, considered by investigators as candidates for NAST, were enrolled in a multi-institutional, single-arm, longitudinal study. Patient-reported outcome measure questionnaires were completed pre- and post-DA, between chemotherapy and surgery, and at 12 months. Outcomes were feasibility (percentage of eligible patients accessing the DA); acceptability to patients (percentage who would recommend it to others) and clinicians (percentage who would use the DA in routine practice); and decision-related outcomes. Results: From 77 eligible women, 59 were enrolled, of whom 47 (79.7%; 95% CI, 69.4-89.9) reported having read the DA; 51 completed the first post-DA questionnaire. Of these 51, 41 participants (80.4%; 95% CI, 69.5-91.3) found the DA useful for their decision about NAST. Of 18 responding investigators, 16 (88.9%; 95% CI, 74.4-103.4) indicated they would continue to use the DA in routine practice. Post-DA, decisional conflict decreased significantly (P<.01); anxiety and distress decreased significantly; and 86.3% (95% CI, 73.7-94.3) achieved at least as much decisional control as they desired. Conclusions: This DA was feasible and acceptable to patients and clinicians, and improvement in decision-related outcomes was demonstrated when used in combination with clinical consultations. This DA could safely be implemented into routine practice for women considering NAST for operable breast cancer.

Background: Helping people achieve their preferred location of care is an important indicator of quality end-of-life (EOL) care. Using a sample of Australian medical oncology outpatients, this study examined (1) their preferred location of EOL care; (2) their perceived benefits and worries of receiving care in that location; (3) the percentage who had discussed preferences with their doctor and/or support person; and (4) whether they wanted their doctor to ask them where they wanted to die. Methods: Adults with a confirmed diagnosis of cancer were approached between September 2015 and January 2016 in the waiting room of an Australian oncology outpatient clinic. Consenting participants completed a home-based pen-and-paper survey indicating preferred location of care, perceived benefits and worries of that location, whether they had discussed preferences with their doctors, and whether they were willing to be asked about their preferences. Results: A total of 203 patients returned the survey (47% of those eligible). Less than half preferred to be cared for at home (47%), 34% preferred a hospice/palliative care unit, and 19% preferred the hospital. Common benefits and worries associated with locations included perceived burden on others, familiarity of environment, availability of expert medical care, symptom management, and likelihood of having wishes respected. More patients had discussed preferences with their support persons (41%) than doctors (7%). Most wanted a doctor to ask them about preferred location of care (87%) and thought it was important to die in the location of their choice (93%). Conclusions: Patients were willing to have clinicians to ask them where they wanted to die, although few had discussed their preferences with doctors. Although home was the most preferred location for many patients, the overall variation suggests that clinicians should adopt a systematic approach to eliciting patient preferences.

Background: Neoadjuvant systemic therapy (NAST) has become an established treatment option for women with operable breast cancer. Aim: We aimed to better understand NAST treatment patterns, barriers and facilitators in Australia and New Zealand. Methods: We undertook a cross-sectional survey of the current clinical practice of Australian and New Zealand breast cancer specialists. Questions included referral patterns for NAST, patient selection, logistics, decision making and barriers. Results: Of 207 respondents, 162 (78%) reported routinely offering NAST to selected patients with operable breast cancer (median 9% of patients offered NAST). Specialty, location, practice type, gender or years of experience did not predict for offering NAST. In all, 45 and 58% wanted to increase the number of patients who receive NAST in routine care and in clinical trials respectively. Facilitators included the multidisciplinary team meeting and access to NAST clinical trials. Specialist-reported patient barriers included: patient desire for immediate surgery (63% rated as important/very important); lack of awareness of NAST (50%); concern about progression (43%) and disinterest in downstaging (32%). Forty-three per cent of participants experienced system-related barriers to the use of NAST, including other clinicians' lack of interest (27%); lack of clinical trials (24%) and unacceptable wait for a medical oncology appointment (37%). Conclusion: This group of Australian and New Zealand clinicians are interested in NAST for operable breast cancer in routine care and clinical trials. Patient- and system-related barriers that prevent the optimal uptake of this treatment approach will need to be systematically addressed if NAST is to become a more common approach.

In an article somewhat ironically entitled "Disambiguating Clinical Intentions," Lynn Jansen promotes an idea that should be bewildering to anyone familiar with the literature on the intention/foresight distinction. According to Jansen, "intention" has two commonsense meanings, one of which is equivalent to "foresight." Consequently, questions about intention are "infected" with ambiguity-people cannot tell what they mean and do not know how to answer them. This hypothesis is unsupported by evidence, but Jansen states it as if it were accepted fact. In this reply, we make explicit the multiple misrepresentations she has employed to make her hypothesis seem plausible. We also point out the ways in which it defies common sense. In particular, Jansen applies her thesis only to recent empirical research on the intentions of doctors, totally ignoring the widespread confusion that her assertion would imply in everyday life, in law, and indeed in religious and philosophical writings concerning the intention/foresight distinction and the Principle of Double Effect. © 2014 The Author.