Contextualising professional ethics: the impact of the prison context on the practices and norms of health care practitioners.

Health care is provided in many contexts—not just hospitals, clinics, and community health settings. Different institutional settings may significantly influence the design and delivery of health care and the ethical obligations and practices of health care practitioners working within them. This is particularly true in institutions that are established to constrain freedom, ensure security and authority, and restrict movement and choice. We describe the results of a qualitative study of the experiences of doctors and nurses working within two women’s prisons in the state of New South Wales (NSW), Australia. Their accounts make clear how the provision and ethics of health care may be compromised by the physical design of the prison, the institutional policies and practices restricting movement of prisoners and practitioners, the focus on maintaining control and security, and the very purpose of the prison and prison system itself. The results of this study make clear the impact that context has on professional practice and illustrate the importance of sociology and anthropology to bioethics and to the development of a more nuanced account of professional ethics. Keywords Prisoners, Health care, Human rights, Professional practice, Professional ethics, Nursing ethic

Trouble in the gap: a bioethical and sociological analysis of informed consent for high-risk medical procedures.

Concerns are frequently raised about the extent to which formal consent procedures actually lead to “informed” consent. As part of a study of consent to high-risk medical procedures, we analyzed in-depth interviews with 16 health care professionals working in bone-marrow transplantation in Sydney, Australia. We find that these professionals recognize and act on their responsibility to inform and educate patients and that they expect patients to reciprocate these efforts by demonstrably engaging in the education process. This expectation is largely implicit, however, and when it is not met, this can give rise to trouble that can have adverse consequences for patients, physicians, and relationships within the clinic. We revisit the concept of the sick role to formalize this new role expectation, and we argue that “informed” consent is a process that is usually incomplete, despite trappings and assumptions that help to create the illusion of completeness. Keywords Informed consent; Sick role; Bioethics; Sociology, Medical; Bone marrow transplantation; Qualitative research; AustraliaNHMR

The long haul: Caring for bone marrow transplant patients in regional Australia

Objective To evaluate the experience of, and services to, patients from rural and regional Australia referred to a large urban tertiary referral hospital for allogeneic haematopoietic cell transplantation (allo‑HCT) and to compare their quality of life with similar populations. Design and setting A cross‑sectional survey of allo‑HCT recipients referred from the Calvary Mater Newcastle to Westmead Hospital, Sydney, NSW. Subjects Thirty‑seven of forty adult survivors of allo‑HCT (92.5%) who underwent transplant between 1999 and 2008 and were at least three months post transplant. Intervention All subjects completed a validated measure of quality‑of‑life (QoL) in bone marrow transplant recipients ( FACT‑BMT Version 4) and the Regional/Rural BMT Needs Assessment Survey. Results Most patients (79%) were between one and five years post transplant. Almost all reported having been sufficiently prepared for transplant and received most information and support from the Nurse Coordinator. Despite the fact that 89% of patients reported significant adverse effects of allo‑HCT, >60% still reported an acceptable quality of life. Importantly, however, about a third of patients experienced financial difficulties associated with transplantation and felt pressure to return to work. Conclusion Patients referred for allo‑HCT should be advised about the arduousness of transplant but also reassured that most survivors will experience acceptable levels of functioning and QoL one to two years after transplant. With sufficient local support and with appropriate nursing care and coordination the experiences of regional/rural patients is comparable with other allo‑HCT patient populations. Further investigation into vocational rehabilitation is warranted due to the significant financial and occupational pressures reported by survivors of allo‑HC

The long haul: Caring for bone marrow transplant patients in regional Australia

Objective To evaluate the experience of, and services to, patients from rural and regional Australia referred to a large urban tertiary referral hospital for allogeneic haematopoietic cell transplantation (allo‑HCT) and to compare their quality of life with similar populations. Design and setting A cross‑sectional survey of allo‑HCT recipients referred from the Calvary Mater Newcastle to Westmead Hospital, Sydney, NSW. Subjects Thirty‑seven of forty adult survivors of allo‑HCT (92.5%) who underwent transplant between 1999 and 2008 and were at least three months post transplant. Intervention All subjects completed a validated measure of quality‑of‑life (QoL) in bone marrow transplant recipients ( FACT‑BMT Version 4) and the Regional/Rural BMT Needs Assessment Survey. Results Most patients (79%) were between one and five years post transplant. Almost all reported having been sufficiently prepared for transplant and received most information and support from the Nurse Coordinator. Despite the fact that 89% of patients reported significant adverse effects of allo‑HCT, >60% still reported an acceptable quality of life. Importantly, however, about a third of patients experienced financial difficulties associated with transplantation and felt pressure to return to work. Conclusion Patients referred for allo‑HCT should be advised about the arduousness of transplant but also reassured that most survivors will experience acceptable levels of functioning and QoL one to two years after transplant. With sufficient local support and with appropriate nursing care and coordination the experiences of regional/rural patients is comparable with other allo‑HCT patient populations. Further investigation into vocational rehabilitation is warranted due to the significant financial and occupational pressures reported by survivors of allo‑HC

Informed consent and medical ordeal: a qualitative study

Background Informed consent is a mainstay of clinical practice, with both moral and legal force. Material disclosure about extreme treatments, however, is unlikely to convey the full impact of the experience of treatment. Informed consent may be flawed under such cir-cumstances. Aims To compare expressed satisfaction with pre-treatment information to satisfaction af-ter experiencing autologous stem cell transplantation (ASCT) for recurrent lymphoma. Methods A qualitative, narrative-based cohort study has been conducted in a Teaching hospital Bone Marrow Transplant unit at Westmead Hospital, Sydney, Australia. The cohort consisted of ten transplant recipients and nine of their nominated lay carers. The Outcome measure was satisfaction expressed in narrative interviews at the time of transplantation and three months later. We used discourse analytic techniques to examine the narratives. Results Both patients and carers expressed high satisfaction with the information given by individual clinicians and by speakers at a formal Information Day held before transplanta-tion. At the first interview, neither patients nor carers commented much on the forthcom-ing ordeal of chemotherapy and bone marrow ablation, although all patients had under-gone previous chemotherapy. At the second interview, the ordeal dominated the narratives, and retrospective dissatisfaction with information was common. Conclusions This study suggests that information about treatment theories and protocols can be satisfactorily communicated, but personal experience of suffering defies communi-cation. This finding has serious implications for the practices involved in obtaining informed consent and for the very notion of informed consent. KEY WORDS Autologous stem cell transplantation; haematological malignancies; extreme treatment; medical communication; informed consent

Beyond evidence: reappraising use of CA-125 as post-therapy surveillance for ovarian cancer

omen who have completed primary chemotherapy for ovarian cancer commonly have serial assessment of the serum tumour marker cancer antigen 125 (CA-125).1 This practice has been based on the proven utility of CA-125 in diagnostic algorithms and as a marker of response to therapy. Serial CA-125 assessment is also used because there is evidence that in women who have completed treatment for ovarian cancer, the serum CA-125 rises 2–6 months before symptoms or signs of relapse develop. The assumption underlying this and other similar studies is that serial monitoring of CA-125 would enable early diagnosis and treatment of relapse. This would thus lead to delay or reduction of cancer-related symptoms, psychological reassurance and, in theory, improved survival. Some studies have suggested that CA-125 may have some benefit in post-treatment surveillance. However, many others have demonstrated that although a rising CA-125 level is highly predictive of relapse, surveillance monitoring of CA-125 levels after remission from primary chemotherapy confers little benefit over standard clinical examination and does not improve duration of survival or quality of life

The perils of a vanishing cohort: A study of social comparisons by women with advanced ovarian cancer

Objective: To examine the role social comparisons play in the experience of ovarian cancer patients and to consider the implications this may have for provision of supportive care services for ovarian cancer patients. Methods: We conducted a longitudinal qualitative study of women with advanced ovarian cancer in Sydney, Australia. Semi-structured interviews were conducted with women with advanced ovarian cancer over a period of 2.5 years. Social comparisons made by 13 study participants in 33 interviews were extracted and analysed using coding categories based on social comparison theory. Results: Participants favoured downward contrasts and lateral comparisons and avoided downward identifications, upward contrasts and upward identifications. Participants expressed a preference for avoiding contact with ovarian cancer patients, for the company of “normal” others, for normalizing information and information that facilitated upward identifications. Conclusions: We suggest that social comparisons made by women with ovarian cancer are influenced by specific clinical factors associated with their diagnosis – in particular their status as a member of a “vanishing cohort” – and argue for further research examining the specific comparison needs and preferences of patients with advanced disease and types of cancer with poor prognoses. Practice implications: These findings raise questions about uniform approaches to the provision of cancer care and suggest that further research may be required to ensure that interventions are appropriately tailored to the supportive care needs of patients with different types and stages of disease. KEYWORDS Cancer; Oncology; Ovarian neoplasms; Social comparison theory; Social support; Self-help groupsNational Health & Medical Research Council Project Grant 40260

Beyond evidence: reappraising use of CA-125 as post-therapy surveillance for ovarian cancer

omen who have completed primary chemotherapy for ovarian cancer commonly have serial assessment of the serum tumour marker cancer antigen 125 (CA-125).1 This practice has been based on the proven utility of CA-125 in diagnostic algorithms and as a marker of response to therapy. Serial CA-125 assessment is also used because there is evidence that in women who have completed treatment for ovarian cancer, the serum CA-125 rises 2–6 months before symptoms or signs of relapse develop. The assumption underlying this and other similar studies is that serial monitoring of CA-125 would enable early diagnosis and treatment of relapse. This would thus lead to delay or reduction of cancer-related symptoms, psychological reassurance and, in theory, improved survival. Some studies have suggested that CA-125 may have some benefit in post-treatment surveillance. However, many others have demonstrated that although a rising CA-125 level is highly predictive of relapse, surveillance monitoring of CA-125 levels after remission from primary chemotherapy confers little benefit over standard clinical examination and does not improve duration of survival or quality of life

Informed consent and medical ordeal: a qualitative study

Background Informed consent is a mainstay of clinical practice, with both moral and legal force. Material disclosure about extreme treatments, however, is unlikely to convey the full impact of the experience of treatment. Informed consent may be flawed under such cir-cumstances. Aims To compare expressed satisfaction with pre-treatment information to satisfaction af-ter experiencing autologous stem cell transplantation (ASCT) for recurrent lymphoma. Methods A qualitative, narrative-based cohort study has been conducted in a Teaching hospital Bone Marrow Transplant unit at Westmead Hospital, Sydney, Australia. The cohort consisted of ten transplant recipients and nine of their nominated lay carers. The Outcome measure was satisfaction expressed in narrative interviews at the time of transplantation and three months later. We used discourse analytic techniques to examine the narratives. Results Both patients and carers expressed high satisfaction with the information given by individual clinicians and by speakers at a formal Information Day held before transplanta-tion. At the first interview, neither patients nor carers commented much on the forthcom-ing ordeal of chemotherapy and bone marrow ablation, although all patients had under-gone previous chemotherapy. At the second interview, the ordeal dominated the narratives, and retrospective dissatisfaction with information was common. Conclusions This study suggests that information about treatment theories and protocols can be satisfactorily communicated, but personal experience of suffering defies communi-cation. This finding has serious implications for the practices involved in obtaining informed consent and for the very notion of informed consent. KEY WORDS Autologous stem cell transplantation; haematological malignancies; extreme treatment; medical communication; informed consent

Cancergazing? CA125 and post-treatment surveillance in advanced ovarian cancer.

Post-treatment surveillance of advanced ovarian cancer involves regular testing of asymptomatic patients using the CA125 test. This practice is based on a rationale that is not supported by evidence from clinical trials. This paper aims to stimulate critical reflection concerning the effect of investigative tests on clinical decisions and interactions, and the experience of illness, particularly in the context of advanced malignant disease. Drawing on the idea of the “medical gaze”, and building on previous health communication research, we present an analysis of in-depth interviews and psychometric tests collected in a prospective study of 20 Australian women with advanced ovarian cancer conducted between 2006 and 2009. We describe the demands placed on patients by the use of the CA125 test, some hazards it creates for decision-making, and some of the test’s subjective benefits. It is widely believed that the CA125 test generates anxiety among patients, and the proposed solution is to educate women more about the test. We found no evidence that anxiety was a problem requiring a response over and above existing services. We conclude that the current debate is simplistic and limited. Focussing on patient anxiety does not account for other important effects of post-treatment surveillance, and educating patients about the test is unlikely to mitigate anxiety because testing is part of a wider process by which patients become aware of a disease that – once it has relapsed – will certainly kill them in the near future.National Health and Medical Research Council Project Grant number 40260