PAlliative Care in chronic Kidney diSease: the PACKS study—quality of life, decision making, costs and impact on carers in people managed without dialysis

BACKGROUND: The number of patients with advanced chronic kidney disease opting for conservative management rather than dialysis is unknown but likely to be growing as increasingly frail patients with advanced renal disease present to renal services. Conservative kidney management includes ongoing medical input and support from a multidisciplinary team. There is limited evidence concerning patient and carer experience of this choice. This study will explore quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers in people with advanced chronic kidney disease managed without dialysis and is funded by the National Institute of Health Research in the UK.

METHODS: In this prospective, multicentre, longitudinal study, patients will be recruited in the UK, by renal research nurses, once they have made the decision not to embark on dialysis. Carers will be asked to 'opt-in' with consent from patients. The approach includes longitudinal quantitative surveys of quality of life, symptoms, decision making and costs for patients and quality of life and costs for carers, with questionnaires administered quarterly over 12 months. Additionally, the decision making process will be explored via qualitative interviews with renal physicians/clinical nurse specialists.

DISCUSSION: The study is designed to capture patient and carer profiles when conservative kidney management is implemented, and understand trajectories of care-receiving and care-giving with the aim of optimising palliative care for this population. It will explore the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the experiences of care givers.

Genomic markers for decision making:What is preventing us from using markers?

The advent of novel genomic technologies that enable the evaluation of genomic alterations on a genome-wide scale has significantly altered the field of genomic marker research in solid tumors. Researchers have moved away from the traditional model of identifying a particular genomic alteration and evaluating the association between this finding and a clinical outcome measure to a new approach involving the identification and measurement of multiple genomic markers simultaneously within clinical studies. This in turn has presented additional challenges in considering the use of genomic markers in oncology, such as clinical study design, reproducibility and interpretation and reporting of results. This Review will explore these challenges, focusing on microarray-based gene-expression profiling, and highlights some common failings in study design that have impacted on the use of putative genomic markers in the clinic. Despite these rapid technological advances there is still a paucity of genomic markers in routine clinical use at present. A rational and focused approach to the evaluation and validation of genomic markers is needed, whereby analytically validated markers are investigated in clinical studies that are adequately powered and have pre-defined patient populations and study endpoints. Furthermore, novel adaptive clinical trial designs, incorporating putative genomic markers into prospective clinical trials, will enable the evaluation of these markers in a rigorous and timely fashion. Such approaches have the potential to facilitate the implementation of such markers into routine clinical practice and consequently enable the rational and tailored use of cancer therapies for individual patients. © 2010 Macmillan Publishers Limited. All rights reserved.

Exercise Prescription for Patients with Non-specific Chronic Low Back Pain: a Qualitative Exploration of Decision Making in Physiotherapy Practice

Background: Providing an effective exercise prescription process for patients with non-specific chronic low back pain (NSCLBP) is a challenging task. Emerging research has indicated that partnership in care and shared decision making are important for people with NSCLBP and calls for further investigation into the approaches used to prescribe exercise. Objective: To explore how shared decision making and patient partnership are addressed by physiotherapists in the process of exercise prescription for patients with NSCLBP. Design: A qualitative study using a philosophical hermeneutic approach. Methods: Eight physiotherapists were each observed on three occasions undertaking their usual clinical activities (total n=24 observations). They conducted brief interviews after each observation and a later in depth semi-structured interview. Iterative hermeneutic strategies were used to interpret the texts and identify the characteristics and processes of exercise prescription for patients with NSCLBP. Findings: The findings revealed how physiotherapy practice often resulted in unequal possibilities for patient participation which were in turn linked to the physiotherapists? assumptions about the patients, clinical orientation, cognitive and decision making processes. Three linked themes emerged: (1) I want them to exercise, (2) Which exercise? - the tension between evidence and everyday practice and (3) Compliance-orientated more than concordance based. Conclusions: This research, by focusing on a patient-centred approach, makes an important contribution to the body of evidence relating to the management of NSCLBP. It challenges physiotherapists to critically appraise their approaches to the prescription of exercise therapy in order to improve outcomes for these patients.

A theoretical and experimental dissociation of two models of decision‐making

La prise de décision est un processus computationnel fondamental dans de nombreux aspects du comportement animal. Le modèle le plus souvent rencontré dans les études portant sur la prise de décision est appelé modèle de diffusion. Depuis longtemps, il explique une grande variété de données comportementales et neurophysiologiques dans ce domaine. Cependant, un autre modèle, le modèle d’urgence, explique tout aussi bien ces mêmes données et ce de façon parcimonieuse et davantage encrée sur la théorie. Dans ce travail, nous aborderons tout d’abord les origines et le développement du modèle de diffusion et nous verrons comment il a été établi en tant que cadre de travail pour l’interprétation de la plupart des données expérimentales liées à la prise de décision. Ce faisant, nous relèveront ses points forts afin de le comparer ensuite de manière objective et rigoureuse à des modèles alternatifs. Nous réexaminerons un nombre d’assomptions implicites et explicites faites par ce modèle et nous mettrons alors l’accent sur certains de ses défauts. Cette analyse servira de cadre à notre introduction et notre discussion du modèle d’urgence. Enfin, nous présenterons une expérience dont la méthodologie permet de dissocier les deux modèles, et dont les résultats illustrent les limites empiriques et théoriques du modèle de diffusion et démontrent en revanche clairement la validité du modèle d'urgence. Nous terminerons en discutant l'apport potentiel du modèle d'urgence pour l'étude de certaines pathologies cérébrales, en mettant l'accent sur de nouvelles perspectives de recherche.

Incorporating semiotics into fuzzy logic to enhance Clinical Decision Support Systems

In order to enhance the quality of care, healthcare organisations are increasingly resorting to clinical decision support systems (CDSSs), which provide physicians with appropriate health care decisions or recommendations. However, how to explicitly represent the diverse vague medical knowledge and effectively reason in the decision-making process are still problems we are confronted. In this paper, we incorporate semiotics into fuzzy logic to enhance CDSSs with the aim of providing both the abilities of describing medical domain concepts contextually and reasoning with vague knowledge. A semiotically inspired fuzzy CDSSs framework is presented, based on which the vague knowledge representation and reasoning process are demonstrated.

Shared decision-making in mental health care : a user perspective on decisional needs in community-based services

BACKGROUND: Shared decision-making (SDM) is an emergent research topic in the field of mental health care and is considered to be a central component of a recovery-oriented system. Despite the evidence suggesting the benefits of this change in the power relationship between users and practitioners, the method has not been widely implemented in clinical practice. OBJECTIVE: The objective of this study was to investigate decisional and information needs among users with mental illness as a prerequisite for the development of a decision support tool aimed at supporting SDM in community-based mental health services in Sweden. METHODS: Three semi-structured focus group interviews were conducted with 22 adult users with mental illness. The transcribed interviews were analyzed using a directed content analysis. This method was used to develop an in-depth understanding of the decisional process as well as to validate and conceptually extend Elwyn et al.'s model of SDM. RESULTS: The model Elwyn et al. have created for SDM in somatic care fits well for mental health services, both in terms of process and content. However, the results also suggest an extension of the model because decisions related to mental illness are often complex and involve a number of life domains. Issues related to social context and individual recovery point to the need for a preparation phase focused on establishing cooperation and mutual understanding as well as a clear follow-up phase that allows for feedback and adjustments to the decision-making process. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The current study contributes to a deeper understanding of decisional and information needs among users of community-based mental health services that may reduce barriers to participation in decision-making. The results also shed light on attitudinal, relationship-based, and cognitive factors that are important to consider in adapting SDM in the mental health system.

Hemodynamic team decision making in the cardiac surgical intensive care context

Purpose
The purpose of this study was to explore the extent and sources of variability of critical care nurses’ hemodynamic decision making as a function of contextual factors in the immediate 2-hour period after cardiac surgery.

Methods
A qualitative exploratory design with observation and interview was used. Eight critical care nurses were observed on different occasions in clinical practice for a 2-hour period. A brief interview immediately followed each observation to clarify observation data.

Findings
Analysis of the data revealed that patient management decisions were made both by individual nurses and by a team of nurses and health professionals. Team decision making (TDM) is described in this study as integrated or non-integrated and refers to an intra-professional nursing team. During displays of integrated TDM, the primary nurse, who was assigned to care for the patient, made most hemodynamic decisions and nurses who assisted the primary nurse deferred decisions. During displays of non-integrated TDM, nurses assisting the primary nurse assumed responsibilities for most patient-related decisions. Non-integrated TDM occurred more frequently when inexperienced cardiac surgical intensive care nurses were in the role of primary nurse, whereas integrated TDM was more common among experienced cardiac surgical intensive care nurses.

Conclusions
This observed variability can occur in multiple ways and in hemodynamic decision making has implications for patient outcomes as behaviors of non-integrated TDM led to nurses sensing a loss of control of patient management.

Naturalistic decision making: a model to overcome methodological challenges in the study of critical care nurses` decision making about patients` hemodynamic status

The quality of critical care nurses' decision making about patients' hemodynamic status in the immediate period after cardiac surgery is important for the patients' well-being and, at times, survival. The way nurses respond to hemodynamic cues varies according to the nurses' skills, experiences, and knowledge. Variability in decisions is also associated with the inherent complexity of hemodynamic monitoring. Previous methodological approaches to the study of hemodynamic assessment and treatment decisions have ignored the important interplay between nurses, the task, and the environment in which these decisions are made. The advantages of naturalistic decision making as a framework for studying the manner in which nurses make decisions are presented.

The influence of patient complexity and nurses` experience on haemodynamic decision-making following cardiac surgery

Critical care nurses’ haemodynamic decision-making in the immediate postoperative cardiac surgical context is complex. To optimise patient outcomes, nurses of varying levels of experience are required to make complex decisions rapidly and accurately. In a dynamic clinical context such as critical care, the quality of such decision-making is likely to vary considerably. The aim of this study was to describe variability of nurses’ haemodynamic decision-making in the 2-hour period after cardiac surgery as a function of interplay between decision complexity, nurses’ levels of experience, and the support provided. A descriptive study based on naturalistic decision-making was used. Data were collected using continuous non-participant observation of clinical practice for a 2-hour period and follow-up interview. Purposive sampling was used to recruit 38 nurses for inclusion in the study. The quality of nurses’ decision-making was influenced by interplay between the complexity of patients’ haemodynamic presentations, nurses’ levels of cardiac surgical intensive care experience, and the form of decision support provided by nursing colleagues. Two factors specifically influenced decision-making quality: nurses’ utilisation of evidence for practice and the experience levels of both nurses and their colleagues. The findings have implications for staff resourcing decisions and postoperative patient management, and may be used to inform nurses’ professional development and education.

Do knowledge and experience have specific roles in triage decision-making?

Accuracy of triage decisions is a major influence on patient outcomes. Triage nurses' knowledge and experience have been cited as influential factors in triage decision-making. The aim of this article is to examine the independent roles of factual knowledge and experience in triage decisions. All of the articles cited in this review were research papers that examined the relationship between triage decisions and knowledge and/or experience of triage nurses. Numerous studies have shown that factual knowledge is an important factor in improving triage decisions. Although a number of studies have examined the role of experience as an independent influence on triage decisions, none have found a significant relationship between experience and triage decision-making. Factual knowledge appears to be more important than years of emergency nursing or triage experience in triage decision accuracy. Many triage education programs are underpinned by the assumption that knowledge acquisition will result in improved triage decisions. A better understanding of the relationships between clinical decisions, knowledge, and experience is pivotal for the rigorous evaluation of education programs.

Decision-making models used by `graduate nurses` managing patients` medications

Background. Nurses in a graduate programme in Australia are those who are in the first year of clinical practice following completion of a 3-year undergraduate nursing degree. When working in an acute care setting, they need to make complex and ever-changing decisions about patients' medications in a clinical environment affected by multifaceted, contextual issues. It is important that comprehensive information about graduate nurses' decision-making processes and the contextual influences affecting these processes are obtained in order to prepare them to meet patients' needs.
Aim. The purpose of this paper is to report a study that sought to answer the following questions: What are the barriers that impede graduate nurses' clinical judgement in their medication management activities? How do contextual issues impact on graduate nurses' medication management activities? The decision-making models considered were: hypothetico-deductive reasoning, pattern recognition and intuition.
Methods. Twelve graduate nurses who were involved in direct patient care in medical and surgical wards of a metropolitan teaching hospital located in Melbourne, Australia participated in the study. Participant observations were conducted with the graduate nurses during a 2-hour period during the times when medications were being administered to patients. Graduate nurses were also interviewed to elicit further information about how they made decisions about patients' medications.
Results. The most common model used was hypothetico-deductive reasoning, followed by pattern recognition and then intuition. The study showed that graduate nurses had a good understanding of how physical assessment affected whether medications should be administered or not. When negotiating treatment options, graduate nurses readily consulted with more experienced nursing colleagues and doctors.
Study limitations. It is possible that graduate nurses demonstrated a raised awareness of managing patients' medications as a consequence of being observed.
Conclusions. The complexity of the clinical practice setting means that graduate nurses need to adapt rapidly to make sound and appropriate decisions about patient care.

Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) : decision-making about 'ongoing change and adaptation

Aims and objectives. To present a model that explicates the dimensions of change and adaptation as revealed by people who are diagnosed and live with amyotrophic lateral sclerosis/motor neurone disease.

Background. Most research about amyotrophic lateral sclerosis/motor neurone disease is medically focused on cause and cure for the illness. Although psychological studies have sought to understand the illness experience through questionnaires, little is known about the experience of living with amyotrophic lateral sclerosis/motor neurone disease as described by people with the disease.

Design. A grounded theory method of simultaneous data collection and constant comparative analysis was chosen for the conduct of this study.

Methods. Data collection involved in-depth interviews, electronic correspondence, field notes, as well as stories, prose, songs and photographs important to participants. QSR NVivo 2® software was used to manage the data and modelling used to illustrate concepts.

Findings. Participants used a cyclic, decision-making pattern about 'ongoing change and adaptation' as they lived with the disease. This pattern formed the basis of the model that is presented in this paper.

Conclusion. The lives of people living with amyotrophic lateral sclerosis/motor neurone disease revolve around the need to make decisions about how to live with the disease progression and their deteriorating abilities. Life decisions were negotiated by participants to maintain a sense of self and well-being in the face of change.

Relevance to clinical practice. The 'ongoing change and adaptation' model is a framework that can guide practitioners to understand the decision-making processes of people living with amyotrophic lateral sclerosis/motor neurone disease. Such understanding will enhance caring and promote models of care that are person-centred. The model may also have relevance for people with other life limiting diseases and their care.

The influence of medical enduring power of attorney and advance directives on decision making by Australian intensive care doctors

OBJECTIVE: Despite government encouragement for patients to make advance plans for medical treatment, and the increasing numbers of patients who have done this, there is little research that examines how doctors regard these plans.
DESIGN: We surveyed Australian intensive care doctors, using a hypothetical clinical scenario, to evaluate how potential end-of-life treatment decisions might be influenced by advance planning - the appointment of a medical enduring power of attorney (MEPA) or an advance care plan (ACP). Using open-ended questions we sought to explore the reasoning behind the doctors' decisions.
RESULTS: 275 surveys were returned (18.3% response rate). We found that opinions expressed by an MEPA and ACP have some influence on treatment decisions, but that intensive care doctors had major reservations. Most did not follow the request for palliation made by the MEPA in the hypothetical scenario.
CONCLUSIONS: Many intensive care doctors believe end-of-life decisions remain medical decisions, and MEPAs and ACPs need only be respected when they accord with the doctor's treatment decision. This study suggests a need for further education of doctors, particularly those working in intensive care, who are responsible for initiating and maintaining life support treatment.

Critical care nurses' haemodynamic decision making

For cardiac surgical patients, the immediate 2-hour recovery period is distinguished by potentially life-threatening haemodynamic instability. To ensure optimum patient outcomes, nurses of varying levels of experience must make rapid and accurate decisions in response to episodes of haemodynamic instability. Decision complexity, nurses’ characteristics, and environmental characteristics, have each been found to influence nurses' decision making in some form. However, the effect of the interplay between these influences on decision outcomes has not been investigated. The aim of the research reported in this thesis was to explore variability in critical care nurses' haemodynamic decision making as a function of interplay between haemodynamic decision complexity, nurses' experience, and specific environmental characteristics by applying a naturalistic decision making design. Thirty-eight nurses were observed recovering patients in the immediate 2-hour period after cardiac surgery. A follow-up semi-structured interview was conducted. A naturalistic decision making approach was used. An organising framework for the goals of therapy related to maintaining haemodynamic stability after cardiac surgery was developed to assist the observation and analysis of practice. The three goals of therapy were the optimisation of cardiovascular performance, the promotion of haemostasia, and the reestablishment of normothermia. The research was conducted in two phases. Phase One explored issues related to observation as method, and identified emergent themes. Phase Two incorporated findings of Phase 1, investigating the variability in nurses' haemodynamic decision making in relation to the three goals of therapy. The findings showed that patients had a high acuity after cardiac surgery and suffered numerous episodes of haemodynamic instability during the immediate 2-hour recovery period. The quality of nurses' decision making in relation to the three goals of therapy was influenced by the experience of the nurse and social interactions with colleagues. Experienced nurses demonstrated decision making that reflected the ability to recognise subtle changes in haemodynamic cues, integrate complex combinations of cues, and respond rapidly to instability. The quality of inexperienced nurses' decision making varied according to the level and form of decision support as well as the complexity of the task. When assistance was provided by nursing colleagues during the reception and recovery of patients, the characteristics of team decision making were observed. Team decision making in this context was categorised as either integrated or non integrated. Team decision making influenced nurses' emotions and actions and decision making practices. Findings revealed nurses' experience affected interactions with other team members and their perceptions of assuming responsibility for complex patients. Interplay between decision complexity, nurses' experience, and the environment in which decisions were made influenced the quality of nurses' decision making and created an environment of team decision making, which, in turn, influenced nurses' emotional responses and practice outcomes. The observed variability in haemodynamic decision making has implications for nurse education, nursing practice, and system processes regarding patient allocation and clinical supervision.

The ethics of surrogate decision making in medicine : autonomy, paternalism, or a different approach?

Knowing who to involve in treatment decisions when a patient is incapacitated has been the subject of discussion in bioethical, health law and clinical research. The major issues tend to revolve around the tension between exercising a degree of medical paternalism and respecting patient autonomy. Patients are encouraged to exert their autonomy even when they may not be capable of doing so, by means of surrogate consent or advanced directives. While liberal concepts of autonomy are exemplified in western bioethics and legal systems, clinically these decisions remain difficult, and input from medical professionals is sought, raising the issue of paternalism. A framework of bioethics, which places the patient in a relational context rather than a strictly autonomous one, may be a more helpful way of deliberating these difficult decisions