Am I my students' nurse? Reflections on the nursing ethics of nursing education.

Despite having worked in higher education for over twenty years, I am still, first and foremost, a practicing nurse. My employer requires me to be a nurse and my regulator regards what I do as nursing. My practice is regulated by the Code and informed by nursing ethics. If I am nurse, practicing nursing, does that mean that my students are my patients? This paper considers how the relationship that I have with my students can be informed by the ethics of the nurse/patient relationship. After some initial theoretical preparation concerning argument from analogy, the paper identifies some areas for comparison between the two relationships. Areas of similarity and difference identify two areas of concern: Nurse education and educators regularly engage in coercion and surveillance in an attempt to increase student success, both of which would be considered outside nursing ethics. It is concluded that these coercive practices are not conducive to an environment where character is cultivated. Despite current financial and workforce pressures, nurse lecturers and more especially their managers would do well to return to the professional ethics of nursing to question and guide their practice.

Adult-Diagnosed Nonsyndromic Nephronophthisis in Australian Families Caused by Biallelic NPHP4 Variants.

There is increasing appreciation of nephronophthisis (NPHP) as an autosomal recessive cause of kidney failure and earlier stages of chronic kidney disease among adults. We identified 2 families with presumed adult-diagnosed nonsyndromic NPHP and negative diagnostic genetic testing results from our Renal Genetics Clinic. Both had 2 affected siblings without extrarenal phenotypes. After informed consent, research whole-genome sequencing was undertaken. Biallelic NPHP4 variants were identified in trans and clinically confirmed in all 4 affected individuals, confirming a genetic diagnosis. Participant 1 of the first family (F1P1) had kidney failure diagnosed at 19 years of age. An affected younger sibling (F1P2) reached kidney failure at age 15 years after kidney biopsy suggested NPHP. Pathogenic variants detected in NPHP4 in this family were NM_015102.4:c.3766C>T (p.Gln1256*) and a 31-kb deletion affecting exons 12 to 16. In the second family, F2P3 reached kidney failure at age 27 years having undergone kidney biopsy suggesting NPHP. An affected younger sibling (F2P4) has chronic kidney disease stage 4 at age 39 years. The NPHP4 variants detected were NM_015102.4:c.1998_1999del (p.Tyr667Phefs*23) and c.3646G>T (p.Asp1216Tyr). The latter variant was initially missed in diagnostic sequencing due to inadequate NPHP4 coverage (94.3% exonic coverage). With these reports, we identify NPHP4 as an appreciable genetic cause for adult-diagnosed nonsyndromic NPHP that should be considered by adult nephrologists.

The spiritual concerns of people experiencing homelessness at the end of life.

BACKGROUND:: Spiritual care is a fundamental component of holistic end-of-life (EoL) care. AIM:: To explore what is known about the spiritual concerns of people experiencing homelessness towards the EoL. METHODS:: A narrative literature review was conducted from 1997 to June 2018 using CINAHL Complete, MEDLINE and PubMed. This identified just 11 relevant papers; eight papers report on studies based in the US, one paper reports on a study based in the Republic of Ireland (ROI), and two of the papers are literature reviews. RESULTS:: Both the ROI and US studies report the primacy of religious beliefs and spiritual experience for people experiencing homelessness considering EoL issues. However, the findings of studies from the US and the ROI are not necessarily transferable to the other populations of people experiencing homelessness. Furthermore, it cannot be assumed that the spiritual needs of people experiencing homelessness mirror those of the housed population. CONCLUSION:: There is a need for further research into the international perspective on the spiritual needs of homeless people towards the EoL, especially in secular countries.

The subversion of Mill and the ultimate aim of nursing.

This is lightly edited and referenced version of a presentation given at the 20th International Philosophy of Nursing conference in Quebec on 23rd August 2016. Philosophical texts are not given the same prominence in nurse education as their more valued younger sibling, primary research evidence, but they can influence practice through guidelines, codes and espoused values. John Stuart Mill's harm principle, found in On Liberty, is not a universal law, and only a thoroughgoing libertarian would defend it as such, though it, or its remnants, can be seen can be seen in policy documents. But its influence is weakening. Smoking bans in enclosed spaces were initially justified with other-regarding considerations, but judgements from unsuccessful legal challenges from patients in UK psychiatric hospitals rely on preventing harm to the smoker, even when smoking outside, which does not harm others. In the wake of legislation, no-smoking policies enacted by hospitals are becoming more aggressive, banning smoking both inside and outside, and extending the use of power gained through employment to prevent nurses assisting patients enjoy a lawful habit. Mill's dictum has been subverted, and this speaks to the fundamental purpose of nursing. Should nurses collude and willingly exert their power for their version of the good of the patient? Or should they instead reaffirm values that support and facilitate life choices made by autonomous people? The paper supports the latter option, and this has wider application for nursing which can be illuminated, if not settled, by revisiting Mill and his famous dictum.

Fatal Dialysis Vascular Access Hemorrhage.

Bleeding from dialysis vascular access (arteriovenous fistulas, arteriovenous grafts, and vascular catheters) is uncommon. Death from these bleeds is rare and likely to be under-reported, with incident rates of fewer than 1 episode for every 1,000 patient-years on dialysis, meaning that dialysis units may experience this catastrophic event only once a decade. There is an opportunity to learn from (and therefore prevent) these bleeding deaths. We reviewed all reported episodes of death due to vascular access bleeding in Australia and New Zealand over a 14-year period together with individual dialysis units' root cause analyses on each event. In this perspective, we provide a clinically useful summary of the evidence and knowledge gained from these rare events. Our conclusion is that death due to dialysis vascular access hemorrhage is an uncommon, catastrophic, but potentially preventable event if the right policies and procedures are put in place.

Carvedilol and Cardiac Biomarkers in Dialysis Patients: Secondary Analysis of a Randomized Controlled Trial.

BACKGROUND/AIMS: Cardiac biomarkers are associated with cardiac abnormalities and adverse outcomes in dialysis patients. Our aim was to report the effect of the beta-blocker carvedilol on cardiac biomarkers in adult dialysis patients. METHODS: The Beta-Blocker to Lower Cardiovascular Dialysis Events Feasibility Study was a randomized controlled trial comparing carvedilol to placebo. Serum and plasma were collected before the run-in, then 6 and 12 months post-randomization to measure B-type Natriuretic Peptide (BNP), N-terminal BNP (NT-ProBNP), high-sensitivity cardiac troponins I (hs-TnI) and T (hs-TnT), and galectin-3. Left ventricular global longitudinal strain (GLS) was measured by echocardiography at baseline. RESULTS: Seventy-two participants were recruited of whom 49 completed the run-in and were randomized to carvedilol (n=26) or placebo (n=23). Baseline echocardiography demonstrated median (inter-quartile range) GLS of -14.27% (-16.63 to -11.93). NTproBNP and hs-TnT correlated with GLS (Spearman's rho=0.34 [p=0.018] and rho=0.28 [p=0.049], respectively). Median change scores from baseline to 12 months did not differ significantly between participants with complete biomarker data randomized to carvedilol (n=15) or placebo (n=16) for any biomarkers. CONCLUSIONS: NT-proBNP and hs-TnT were associated with GLS. However, changes in levels of the biomarkers from baseline to 12 months were not different between groups randomized to carvedilol and placebo.

Muscle strength, mobility, quality of life and falls in patients on maintenance haemodialysis: A prospective study.

AIM: The aim is to explore (i) the relationship between quality of life and physical parameters (muscle strength and mobility) among people undergoing maintenance haemodialysis; (ii) changes in strength and mobility over time and predictors of changes; and (iii) whether strength and mobility were associated with falls. METHODS: We recruited 51 maintenance haemodialysis patients to a prospective longitudinal study. Baseline quality of life was assessed using the SF-36 physical component summary and mental component summary scores. Muscle strength (ankle dorsiflexion strength measured with a hand-held dynamometer), mobility (short physical performance battery) and falls history were assessed at baseline, 12 and 36 months. Associations between variables at baseline were assessed with linear regression models. Changes in physical parameters were evaluated with paired t-tests and prediction of falls assessed by negative binominal regression. RESULTS: Fifty and 34 patients completed 12 and 36 month follow-ups, respectively. Baseline mobility but not muscle strength correlated with physical component summary (P = 0.01 and P = 0.23, respectively). Neither baseline mobility nor muscle strength correlated with mental component summary. At 12 months, muscle strength and mobility had significantly deteriorated (mean ankle dorsiflexion strength 11.0 lb (SD 1.5) from 14.0 lb (SD 2.2), P < 0.01; short physical performance battery 8.5 (SD 2.8) from 9.3 (SD 2.6), P < 0.01). Falls at 12 and 36 months were predicted by baseline mobility (P = 0.06 and P = 0.02, respectively) but not muscle strength. CONCLUSION: Physical parameters appear to be associated with meaningful patient outcomes and showed measurable deterioration over relatively short time frames. Interventions, with the potential to slow physical decline in people receiving maintenance dialysis, such as exercise programmes, warrant further investigation.

Difficult conversations: Australian Indigenous patients' views on kidney transplantation.

BACKGROUND: Indigenous Australians suffer a disproportionate burden of end stage kidney disease (ESKD) but are significantly less likely to receive a transplant. This study explores Indigenous ESKD patients' views on transplantation as a treatment option. METHODS: The Improving Access to Kidney Transplants (IMPAKT) research program investigated barriers to kidney transplantation for Indigenous Australians. An interview study, conducted in 2005-2006, elicited illness experience narratives from 146 Indigenous patients, including views on transplant. Interviews were conducted at 26 sites that collectively treat the majority of Indigenous ESKD patients. Key themes were identified via team consensus meetings, providing a flexible framework and focus for continued coding. RESULTS: Four inter-related themes were identified in patient commentary: a very high level (90% of respondents) of positive interest in transplantation; patients experienced a range of communication difficulties and felt uninformed about transplant; family involvement in decision-making was constrained by inadequate information; and patients needed to negotiate cultural and social sensitivities around transplantation. CONCLUSIONS: Indigenous ESKD patients demonstrated an intense interest in transplantation preferring deceased over living kidney donation. Patients believe transplant is the path most likely to support the re-establishment of their 'normal' family life. Patients described themselves as poorly informed; most had only a rudimentary knowledge of the notion of transplant but no understanding of eligibility criteria, the transplant procedure and associated risks. Patients experienced multiple communication barriers that - taken together - undermine their engagement in treatment decision-making. Families and communities are disempowered because they also lack information to reach a shared understanding of transplantation. Cultural sensitivities associated with transplantation were described but these did not appear to constrain patients in making choices about their own health. Transplant units and local treatment providers should collaborate to develop user-friendly, culturally informed and region-specific patient education programs. Quality improvement cycles should underpin the development of national guidelines for patient education. Noting Indigenous patients' intense interest in transplantation, and nephrologists' concerns regarding poor transplant outcomes, research should prioritise exploring the predictors of transplant outcomes for Indigenous Australians.

Can the revised UK code direct practice?

The Nursing and Midwifery Council, the United Kingdom regulator of nursing and midwifery has recently revised its professional code of practice. This article begins by arguing that a professional code must be capable of sustaining close reading and of action guidance. Using four exemplar clauses, it is argued that the new revised code does not meet this purpose. First, I show that in setting out requirements for consent and documentation, the meaning of the relevant clause has changed significantly during the editing process so that a literal reading of the final document bears little relation to established professional practice. Second, I argue that the clause concerning the nature of professional relationships has also been altered during the editing process so that it is inconsistent with other professional groups and established accounts of the professional nurse-patient relationship. Third, I argue that the clause concerning disclosure of confidential information, which survived revision and editing with its meaning intact, is nevertheless factually incorrect and inconsistent with UK law and authoritative guidance. Finally, fourth, I argue that use of the word 'inappropriate' is inappropriate as it amounts to meaningless circularity, discussed in relation to a clause on expressing personal beliefs. Taken together, these examples demonstrate that the Code is seriously flawed and does not fulfil its purpose. One way that simple prescriptive clauses in the Code can be usefully understood is through the provision of detailed guidance. I argue that the Nursing and Midwifery Council has changed its position on its view of the value of guidance and has significantly reduced the amount of written guidance and advice it provides. The article concludes by arguing that in order to meet its action directing function, further clarifying revision and the provision of detailed guidance is required.

The metaethics of nursing codes of ethics and conduct.

Nursing codes of ethics and conduct are features of professional practice across the world, and in the UK, the regulator has recently consulted on and published a new code. Initially part of a professionalising agenda, nursing codes have recently come to represent a managerialist and disciplinary agenda and nursing can no longer be regarded as a self-regulating profession. This paper argues that codes of ethics and codes of conduct are significantly different in form and function similar to the difference between ethics and law in everyday life. Some codes successfully integrate these two functions within the same document, while others, principally the UK Code, conflate them resulting in an ambiguous document unable to fulfil its functions effectively. The paper analyses the differences between ethical-codes and conduct-codes by discussing titles, authorship, level, scope for disagreement, consequences of transgression, language and finally and possibly most importantly agent-centeredness. It is argued that conduct-codes cannot require nurses to be compassionate because compassion involves an emotional response. The concept of kindness provides a plausible alternative for conduct-codes as it is possible to understand it solely in terms of acts. But if kindness is required in conduct-codes, investigation and possible censure follows from its absence. Using examples it is argued that there are at last five possible accounts of the absence of kindness. As well as being potentially problematic for disciplinary panels, difficulty in understanding the features of blameworthy absence of kindness may challenge UK nurses who, following a recently introduced revalidation procedure, are required to reflect on their practice in relation to The Code. It is concluded that closer attention to metaethical concerns by code writers will better support the functions of their issuing organisations.

Who can blame who for what and how in responsibility for health?

This paper starts by introducing a tripartite conception of responsibility for health consisting of a moral agent having moral responsibilities and being held responsible, that is blamed, for failing to meet them and proceeds to a brief discussion of the nature of the blame, noting difficulties in agency and obligation when the concept is applied to health-threatening behaviours. Insights about the obligations that we hold people to and the extent of their moral agency are revealed by interrogating our blaming behavior, and to facilitate this, my own blaming attitudes and actions are analysed in respect of an imagined adult son who seeks thrills by jumping from a pier into the sea, an activity common around coastlines and intended to be analogous in varying degrees to a range of health-threatening behaviours. I consider my responses to this imagined act in relation to some features of moralism, the excess of morality, concluding that blame can be justified when it is proportionate and within interpersonal relationships. There is evidence that some nurses hold negative blaming attitudes towards groups of patients considered to have caused or contributed to their illness, but this is not justified, not only because of impaired agency, but also because if there is responsibility for health, associated obligations are owed to those who share our lives, and it is those people who are entitled to hold individuals responsible. Nurses who hold negative blaming attitudes towards groups of patients are invited to identify the status of moral agency, the precise natures of their (failed) obligations, and of the patient-nurse relationship. It is concluded that reflection on these matters and the difference between justified blame and moralism demonstrates that blaming behaviour in the context of professional health care is built on nothing stronger than prejudice.

Impact of estimated GFR reporting on late referral rates and practice patterns for end-stage kidney disease patients: a multilevel logistic regression analysis using the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA).

BACKGROUND: Late referral for renal replacement therapy (RRT) leads to worse outcomes. In 2005, estimated glomerular filtration rate (eGFR) reporting began in Australasia, with an aim of substantially increasing earlier disease detection. STUDY DESIGN: Observational cohort study using the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) data. SETTING & PARTICIPANTS: All patients commencing RRT in Australasia between January 1, 1999, and December 31, 2010. We excluded the period between December 31, 2004, and January 1, 2007, to allow for practice change. FACTOR: Introduction of eGFR reporting. OUTCOMES: Primary outcome was late referral defined as commencing RRT within 3 months of nephrology referral. Secondary outcomes included initial RRT modality and prepared access at hemodialysis therapy initiation. MEASUREMENTS: Late referral rates per era were determined and multilevel logistic regression was used to identify late referral predictors. RESULTS: We included 25,009 patients. Overall, 3,433 (25.3%) patients were referred late in the pre-eGFR era compared with 2,464 (21.6%) in the post-eGFR era, for an absolute reduction of 3.7% (95% CI, 2.7%-4.8%; P<0.001). After adjustments for age, body mass index, race, comorbid conditions, and primary kidney disease, adjusted late referral rates were 25.8% (95% CI, 23.3%-28.3%) and 21.8% (95% CI, 19.2%-24.4%) in the pre- and post-eGFR eras, respectively, for a difference of 4.0% (95% CI, 1.2%-6.8%; P=0.005). Late referral risk was attenuated significantly post-eGFR reporting (OR, 1.30; 95% CI, 1.12-1.51) compared to pre-eGFR reporting (OR, 2.15; 95% CI, 1.88-2.46) for indigenous patients. Late referral rates decreased for older patients but increased slightly for younger patients (P=0.001 for interaction between age and era). There was no impact on initial RRT modality or prepared access rates at hemodialysis therapy initiation between eras. LIMITATIONS: Residual confounding could not be excluded. CONCLUSIONS: eGFR reporting was associated with small reductions in late referral, but more than 1 in 5 patients are still referred late. Other initiatives to increase timely referral warrant investigation.

How do clinical and psychological variables relate to quality of life in end-stage renal disease? Validating a proximal-distal model.

PURPOSE: The aims of this study were to: (1) validate the proximal-distal (PD) model in predialysis and early dialysis and (2) examine the role of hemoglobin on quality of life (QoL) in these patient groups. METHODS: Cross-sectional observational studies of 475 participants recruited from four major university teaching hospitals were conducted. The multi-sample structural equation modeling with latent composite techniques was employed to test the PD model. Seven factors were measured, including QoL, positive affect, depression, physical functioning, kidney disease symptoms, comorbidity and hemoglobin. RESULTS: The results showed that both the equality-constrained and equality-unconstrained PD models were supported by fit statistics. The chi square difference test of the two models was non-significant, indicating that the PD model was consistent across groups. The alternative models were rejected by fit statistics, suggesting that hemoglobin does not impact on psychological states but QoL. CONCLUSIONS: This study validates the PD model across the end-stage renal disease (ESRD) patient groups and shows a hierarchical causal relationship between clinical factors, physical functioning, psychological states and QoL, with hemoglobin as an exception. This model provides an empirical framework for integrating and studying a range of clinical factors and health outcomes in ESRD.

Challenging the moral status of blood donation.

The World Health Organisation encourages that blood donation becomes voluntary and unremunerated, a system already operated in the UK. Drawing on public documents and videos, this paper argues that blood donation is regarded and presented as altruistic and supererogatory. In advertisements, donation is presented as something undertaken for the benefit of others, a matter attracting considerable gratitude from recipients and the collecting organisation. It is argued that regarding blood donation as an act of supererogation is wrongheaded, and an alternative account of blood donation as moral obligation is presented. Two arguments are offered in support of this position. First, the principle of beneficence, understood in a broad consequentialist framework obliges donation where the benefit to the recipient is large and the cost to the donor relatively small. This argument can be applied, with differing levels of normativity, to various acts of donation. Second, the wrongness of free riding requires individuals to contribute to collective systems from which they benefit. Alone and in combination these arguments present moral reasons for donation, recognised in communication strategies elsewhere. Research is required to evaluate the potential effects on donation of a campaign which presents blood donation as moral obligation, but of wider importance is the recognition that other-regarding considerations in relation to our own as well as others' health result in a range not only of choices but also of obligations.

The Point-of-Care Peritoneal Dialysis System Early Evaluation Study (POC-PDEE): A pilot proof-of-principal study of the Ellen Medical Devices Point-of-Care affordable peritoneal dialysis system.

The global unmet need for kidney replacement therapy means that millions of people die every year as they cannot afford treatment. Peritoneal dialysis (PD) offers comparable survival to haemodialysis and is often more affordable, but one barrier to increasing access is that conventional manufacturing and distribution of PD fluid is costly. Here we report the results from a pilot proof-of-principal study demonstrating for the first time that the Ellen Medical Devices Point-of-Care system can be used by patients to produce sterile PD fluid at the point-of-care. With further development, this low-cost system could offer a solution to the many millions of people around the world who currently cannot afford treatment for kidney failure.

Genomic Testing in Patients with Kidney Failure of an Unknown Cause: a National Australian Study.

BACKGROUND: The cause of kidney failure is unknown in approximately 10% of patients with stage 5 chronic kidney disease (CKD). For those who first present to nephrology care with kidney failure, standard investigations of serology, imaging, urinalysis and kidney biopsy are limited differentiators of etiology. We aimed to determine the diagnostic utility of whole-genome sequencing (WGS) with analysis of a broad kidney gene panel in patients with kidney failure of unknown cause. METHODS: We prospectively recruited 100 participants who reached CKD stage 5 at 50 years of age and had an unknown cause of kidney failure after standard investigation. Clinically-accredited WGS was performed in this national cohort after genetic counselling. The primary analysis was targeted to 388 kidney-related genes with second-tier genome-wide and mitochondrial analysis. RESULTS: The cohort was 61% male and the average age of participants at stage 5 CKD was 32 years (9 months to 50 years). A genetic diagnosis was made in 25% of participants. Disease-causing variants were identified across autosomal dominant tubulointerstitial kidney disease (6), glomerular disorders (4), ciliopathies (3), tubular disorders (2), Alport syndrome (4) and mitochondrial disease (1). Most diagnoses (80%) were in autosomal dominant, X-linked or mitochondrial conditions (UMOD; COL4A5; INF2; CLCN5; TRPC6; COL4A4; EYA1; HNF1B; WT1; NBEA; m.3243A>G). Patients with a family history of CKD were more likely to have a positive result (OR 3.29, 95% CI 1.10-11.29). Thirteen percent of participants without a CKD family history had a positive result. In those who first presented in stage 5 CKD, WGS with broad analysis of a curated kidney-disease gene panel was diagnostically more informative than kidney biopsy, with biopsy being inconclusive in 24 of 25 participants. CONCLUSIONS: In this prospectively ascertained Australian cohort, we identified a genetic diagnosis in 25% of patients with kidney failure of unknown cause.

Comparative efficacy of a team-led treatment protocol for the management of renal anaemia.

AIM: To evaluate the efficacy of a team-led anaemia management protocol based on current guidelines. METHODS: The effect of a treatment protocol in implementing an anaemia guideline was evaluated in a large teaching hospital, encompassing three (two in-hospital and one satellite) dialysis facilities. Quarterly data were collected, over a 6-year period, on all patients dialysing in these facilities, before and after implementation of an anaemia management treatment protocol. This protocol was developed by a physician-led team and implemented by an anaemia coordinator assisted by the unit staff. The primary outcome measure was the proportion of patients receiving erythropoietin with ferritin levels within the national guidelines target range calculated using data on haemoglobin (Hb), iron studies, dry weight and erythropoietin dose. RESULTS: Data was collected on >150 patients every quarter between 2005 and 2010 (inclusive). The proportion of patients within the primary outcome target range increased from a nadir of 17% to 51% with evidence of true systematic change. The proportion of patients with Hb values within the unit target range also increased from 46% to 56% (P = 0.25) between the first and last years of the project. These changes were also associated with reduced erythropoietin drug use down to 0.44 µg/kg per week. CONCLUSION: Implementation of a treatment protocol for anaemia management in haemodialysis patients was associated with greater consistency with guideline evidence and lower drug use. Achieving such guideline recommendations for ferritin targets in more than 50% of patients appears feasible.

Ethical and professional concerns in research utilisation: intentional rounding in the United Kingdom.

Intentional rounding, a process involving the performance of regular checks on all patients following a standardised protocol, is being introduced widely in the United Kingdom. The process has been promoted by the Prime Minister and publicised by the Chief Nursing Officer at the Department of Health as well as by influential think tanks and individual National Health Service organisations. An evidence base is offered in justification. This article subjects the evidence base to critical scrutiny concluding that it consists of poor quality studies and serial misreporting of findings and a failure to consider wider concerns, including transference of evidence to differing health-care systems, and the conflation of perception and quality of care. Political promotion and wide implementation of intentional rounding despite the flimsy and questionable evidence base raise questions about the use of evidence in ethical nursing practice and the status of nursing as an autonomous profession.