Doctors and their patients : A context for understanding the wish to hasten death

There is a paucity of research that has directly examined the role of the health professional in dealing with a terminally ill patient's wish to hasten death (WTHD) and the implications of this for the support and services needed in the care for a dying patient. Themes to emerge from a qualitative analysis of interviews conducted on doctors (n=24) involved in the treatment and care of terminally ill patients were (i) the doctors' experiences in caring for their patients (including themes of emotional demands/expectations, the duration of illness, and the availability of palliative care services); (ii) the doctors' perception of the care provided to their respective patients (comprising themes concerning satisfaction with the care for physical symptoms, for emotional symptoms, or overall care); (iii) the doctors' attitudes to euthanasia and (iv) the doctors' perception of their patients' views/beliefs regarding euthanasia and hastened death. When responses were categorised according to the patients' level of a WTHD, the theme concerning the prolonged nature of the patients' illnesses was prominent in the doctor group who had patients with the highest WTHD, whereas there was only a minority of responses concerning support from palliative care services and satisfaction with the level of emotional care in this group. This exploratory study presents a set of descriptive findings identifying themes among a small group of doctors who have been involved in the care of terminally ill cancer patients, to investigate factors that may be associated with the WTHD among these patients. The pattern of findings suggest that research investigating the doctor-patient interaction in this setting may add to our understanding of the problems (for patients and their doctors) that underpins the wish to hasten death in the terminally ill.

Terminally ill cancer patients’ wish to hasten death

This exploratory study investigated factors associated with the wish to hasten death among a sample of terminally ill cancer patients. Semi-structured interviews conducted on a total of 72 hospice and home palliative care patients were subjected to qualitative analysis using QSRNUDIST. The main themes to emerge suggested that patients with a high wish to hasten death had greater concerns with physical symptoms and psychologica l suffering, perceived themselves to be more of a burden to others, and experienced higher levels of demoralization, while also reporting less confidence in symptom control, fewer social supports, less satisfaction with life experiences and fewer religious beliefs when compared with patients who had a moderate or no wish to hasten death. The implications of these findings will be discussed.

Emergency department nurses' understanding and experiences of implementing discharge planning

Aim: This paper is a report of a study conducted to describe emergency department nurses' understanding and experiences of implementing discharge planning. ---------- Background: Discharge planning in the emergency department is an important issue because of increased healthcare costs and greater emphasis on continuity of care. When executed as a collaborative process involving a multi-disciplinary team with the patient and family, discharge planning provides continuity of care for patients, less demand on hospitals, improvement in community services and in the services of other healthcare organizations. ---------- Method: The qualitative approach of phenomenography was used in this study. Thirty-two emergency department nurses were recruited between July and September 2005. Semi-structured interviews were conducted. ---------- Findings: From interviewees' descriptions of implementing discharge planning, six categories were established: implementing discharge planning as 'getting rid of my patients', completing routines, being involved in patient education, professionally accountable practice, autonomous practice and demonstrating professional emergency department nursing care. The referential meaning of implementing discharge planning 'in the outcome space' was the professional commitment to emergency department provision of effective discharge services. ---------- Conclusion: The results of this research contribute to knowledge of emergency department nurses' experience in the implementation of the discharge planning process. Key requirements for the provision of manageable discharge services both in Taiwan and worldwide highlighted by this study include adequate workloads, sufficient time, clear policies and standards of discharge planning and enhancement of professional commitment.

Evaluating the effect of a patient education brochure on patients’ expectations and satisfaction with emergency department service

Introduction: The purpose of this study was to assess the capacity of a written intervention, in this case a patient information brochure, to improve patient satisfaction during an Emergency Department (ED) visit. For the purpose of measuring the effect of the intervention the ED journey was conceptualised as a series of distinct areas of service comprising waiting time, service by the triage nurse, care from doctors and nurses and information giving Background of study: Research into patient satisfaction has become a widespread activity endorsed by both governments and hospital administrations. The literature on ED patient satisfaction has consistently indicated three primary areas of patient dissatisfaction: waiting time, nursing care and communication. Recent developments in the literature on patient satisfaction studies however have highlighted the relationship between patients. expectations of a service encounter and their consequent assessment of the experience as dissatisfying or satisfying. Disconfirmation theory posits that the degree to which expectations are confirmed will affect subsequent levels of satisfaction. The conceptual framework utilised in this study is Coye.s (2004) model of disconfirmation. Coye while reiterating satisfaction is a consequence of the degree expectations are either confirmed or disconfirmed also posits that expectations can be modified by interventions. Coye.s work conceptualises these interventions as intra encounter experiences (cues) which function to adjust expectations. Coye suggests some cues are unintended and may have a negative impact which also reinforces the value of planned cues intended to meet or exceed consumer expectations. Consequently the brochure can be characterized as a potentially positive cue, encouraging the patient to understand processes and to orient them in what can be a confronting environment. Only a limited number of studies have examined the effect of written interventions within an ED. No studies could be located which have tested the effect of ED interventions using a conceptual framework which relates the effect of the degree to which expectations are confirmed or disconfirmed in terms of satisfaction with services. Method: Two studies were conducted. Study One used qualitative methods to explore patients. expectations of the ED from the perspective of both patients and health care professionals. Study One was used in part to direct the development of the intervention (brochure) in Study Two. The brochure was an intervention designed to modify patients. expectations thus increasing their satisfaction with the provision of ED service. As there was no existing tools to measure ED patients. expectations and satisfaction a new tool was also developed based on the findings and the literature of Study One. Study Two used a non-randomised, quasi-experimental approach using a non-equivalent post-test only comparison group design used to investigate the effect of the patient education brochure (Stommel and Wills, 2004). The brochure was disseminated to one of two study groups (the intervention group). The effect of the brochure was assessed by comparing the data obtained from both the intervention and control group. These two groups consisted of 150 participants each. It was expected that any differences in the relevant domains selected for examination would indicate the effect of the brochure both on expectation and potentially satisfaction. Results: Study One revealed several areas of common ground between patients and nurses in terms of relevant content for the written intervention, including the need for information on the triage system and waiting times. Areas of difference were also found with patients emphasizing communication issues, whereas focus group members expressed concern that patients were often unable to assimilate verbal information. The findings suggested the potential utility of written material to reinforce verbal communication particularly in terms of the triage process and other ED protocols. This material was synthesized within the final version of the written intervention. Overall the results of Study Two indicated no significant differences between the two groups. The intervention group did indicate a significant number of participants who viewed the brochure of having changed their expectations. The effect of the brochure may have been obscured by a lack of parity between the two groups as the control group presented with statistically significantly higher levels of acuity and experienced significantly shorter waiting times. In terms of disconfirmation theory this would suggest expectations that had been met or exceeded. The results confirmed the correlation of expectations with satisfaction. Several domains also indicated age as a significant predictor with older patients tending to score higher satisfaction results. Other significant predictors of satisfaction established were waiting time and care from nurses, reinforcing the combination of efficient service and positive interpersonal experiences as being valued by patients. Conclusions: Information presented in written form appears to benefit a significant number of ED users in terms of orientation and explaining systems and procedures. The degree to which these effects may interact with other dimensions of satisfaction however is likely to be limited. Waiting time and interpersonal behaviours from staff also provide influential cues in determining satisfaction. Written material is likely to be one element in a series of coordinated strategies to improve patient satisfaction during periods of peak demand.

Colorectal cancer survivors’ exercise experiences and preferences : qualitative findings from an exercise rehabilitation programme immediately after chemotherapy

Little is known about cancer survivors’ experiences with and preferences for exercise programmes offered during rehabilitation (immediately after cancer treatment). This study documented colorectal cancer survivors’ experiences in an exercise rehabilitation programme and their preferences for programme content and delivery. At the completion of 12-weeks of supervised exercise, 10 participants took part in one-on-one semi-structured interviews. Data from these interviews were coded, and themes were identified using qualitative software. Key findings were that most participants experienced improvements in treatment symptoms, including reduced fatigue and increased energy and confidence to do activities of daily living. They also reported that interactions with the exercise trainer and a flexible programme delivery were important aspects of the intervention. Most participants reported that they preferred having a choice of exercise, starting to exercise within a month after completing treatment, having supervision and maintaining a one-on-one format. Frustrations included scheduling conflicts and a lack of a transition out of the programme. The findings indicate that colorectal cancers experience benefits from exercise offered immediately after treatment and prefer individual attention from exercise staff. They further indicate directions for the implementation of future exercise programmes with this population.

Childhood experiences of cancer : an interpretative phenomenological analysis approach

Pediatric oncology has emerged as one of the great medical success stories of the last 4 decades. The cure rate of childhood cancer has increased from approximately 25% in the 1960’s to more than 75% in more recent years. However, very little is known about how children actually experience the diagnosis and treatment of their illness. A total of 9 families in which a child was diagnosed with cancer were interviewed twice over a 12-month period. Using the qualitative methodology of interpretative phenomenological analysis (IPA), children’s experiences of being patients with a diagnosis of cancer were explicated. The results revealed 5 significant themes: the experience of illness, the upside of being sick, refocusing on what is important, acquiring a new perspective, and the experience of returning to wellbeing. Changes over time were noted because children’s experiences’ were often pertinent to the stage of treatment the child had reached. These results revealed rich and intimate information about a sensitive issue with implications for understanding child development and medical and psychosocial treatment.

Life impact of ankle fractures : qualitative analysis of patient and clinician experiences

Background: Ankle fractures are one of the more commonly occurring forms of trauma managed by orthopaedic teams worldwide. The impacts of these injuries are not restricted to pain and disability caused at the time of the incident, but may also result in long term physical, psychological, and social consequences. There are currently no ankle fracture specific patient-reported outcome measures with a robust content foundation. This investigation aimed to develop a thematic conceptual framework of life impacts following ankle fracture from the experiences of people who have suffered ankle fractures as well as the health professionals who treat them. Methods: A qualitative investigation was undertaken using in-depth semi-structured interviews with people (n=12) who had previously sustained an ankle fracture (patients) and health professionals (n=6) that treat people with ankle fractures. Interviews were audio-recorded and transcribed. Each phrase was individually coded and grouped in categories and aligned under emerging themes by two independent researchers. Results: Saturation occurred after 10 in-depth patient interviews. Time since injury for patients ranged from 6 weeks to more than 2 years. Experience of health professionals ranged from 1 year to 16 years working with people with ankle fractures. Health professionals included an Orthopaedic surgeon (1), physiotherapists (3), a podiatrist (1) and an occupational therapist (1). The emerging framework derived from patient data included eight themes (Physical, Psychological, Daily Living, Social, Occupational and Domestic, Financial, Aesthetic and Medication Taking). Health professional responses did not reveal any additional themes, but tended to focus on physical and occupational themes. Conclusions: The nature of life impact following ankle fractures can extend beyond short term pain and discomfort into many areas of life. The findings from this research have provided an empirically derived framework from which a condition-specific patient-reported outcome measure can be developed.

Weight stigma in maternity care : women's experiences and care providers' attitudes

Background: Weight stigma is pervasive in Western society and in healthcare settings, and has a negative impact on victims’ psychological and physical health. In the context of an increasing focus on the management of overweight and obese women during and after pregnancy in research and clinical practice, the current studies aimed to examine the presence of weight stigma in maternity care. Addressing previous limitations in the weight stigma literature, this paper quantitatively explores the presence of weight stigma from both patient and care provider perspectives. Methods: Study One investigated associations between pre-pregnancy body mass index (BMI) and experiences of maternity care from a state-wide, self-reported survey of 627 Australian women who gave birth in 2009. Study Two involved administration of an online survey to 248 Australian pre-service medical and maternity care providers, to investigate their perceptions of, and attitudes towards, providing care for pregnant patients of differing body sizes. Both studies used linear regression analyses. Results: Women with a higher BMI were more likely to report negative experiences of care during pregnancy and after birth, compared to lower weight women. Pre-service maternity care providers perceived overweight and obese women as having poorer self-management behaviours, and reported less positive attitudes towards caring for overweight or obese pregnant women, than normal weight pregnant women. Even care providers who reported few weight-stigmatising attitudes responded less positively to overweight and obese pregnant women. Conclusions: Overall, these results provide preliminary evidence that weight stigma is present in maternity care settings in Australia. They suggest a need for further research into the nature and consequences of weight stigma in maternity care, and for the inclusion of strategies to recognise and combat weight stigma in maternity care professionals’ training.

Fatigue self-management : a survey of Chinese cancer patients undergoing chemotherapy

Aims and objectives. To examine Chinese cancer patients’ fatigue self-management, including the types of self-management behaviours used, their confidence in using these behaviours, the degree of relief obtained and the factors associated with patients’ use of fatigue self-management behaviours. Background. Fatigue places significant burden on patients with cancer undergoing chemotherapy. While some studies have explored fatigue self-management in Western settings, very few studies have explored self-management behaviours in China. Design. Cross-sectional self- and/or interviewer-administered survey. Methods. A total of 271 participants with self-reported fatigue in the past week were recruited from a specialist cancer hospital in south-east China. Participants completed measures assessing the use of fatigue self-management behaviours, corresponding self-efficacy, perceived relief levels plus items assessing demographic characteristics, fatigue experiences, distress and social support. Results. A mean of 4_94 (_2_07; range 1–10) fatigue self-management behaviours was reported. Most behaviours were rated as providing moderate relief and were implemented with moderate self-efficacy. Regression analyses identified that having more support from one’s neighbourhood and better functional status predicted the use of a greater number of self-management behaviours. Separate regression analyses identified that greater neighbourhood support predicted greater relief from ‘activity enhancement behaviours’ and that better functional status predicted greater relief from ‘rest and sleep behaviours’. Higher self-efficacy scores predicted greater relief from corresponding behaviours. Conclusions. A range of fatigue self-management behaviours were initiated by Chinese patients with cancer. Individual, condition and environmental factors were found to influence engagement in and relief from fatigue self-managementbehaviours. Relevance to clinical practice. Findings highlight the need for nurses to explore patients’ use of fatigue self-management behaviours and the effectiveness of these behaviours in reducing fatigue. Interventions that improve patients’ self-efficacy and neighbourhood supports have the potential to improve outcomes from fatigue self-management behaviours.

Study protocol : establishing good relationships between patients and health care providers while providing cardiac care. Exploring how patient-clinician engagement contributes to health disparities between indigenous and non-indigenous Australians in South Australia

Abstract Background: Studies that compare Indigenous Australian and non-Indigenous patients who experience a cardiac event or chest pain are inconclusive about the reasons for the differences in-hospital and survival rates. The advances in diagnostic accuracy, medication and specialised workforce has contributed to a lower case fatality and lengthen survival rates however this is not evident in the Indigenous Australian population. A possible driver contributing to this disparity may be the impact of patient-clinician interface during key interactions during the health care process. Methods/Design: This study will apply an Indigenous framework to describe the interaction between Indigenous patients and clinicians during the continuum of cardiac health care, i.e. from acute admission, secondary and rehabilitative care. Adopting an Indigenous framework is more aligned with Indigenous realities, knowledge, intellects, histories and experiences. A triple layered designed focus group will be employed to discuss patient-clinician engagement. Focus groups will be arranged by geographic clusters i.e. metropolitan and a regional centre. Patient informants will be identified by Indigenous status (i.e. Indigenous and non-Indigenous) and the focus groups will be convened separately. The health care provider focus groups will be convened on an organisational basis i.e. state health providers and Aboriginal Community Controlled Health Services. Yarning will be used as a research method to facilitate discussion. Yarning is in congruence with the oral traditions that are still a reality in day-to-day Indigenous lives. Discussion: This study is nestled in a larger research program that explores the drivers to the disparity of care and health outcomes for Indigenous and non-Indigenous Australians who experience an acute cardiac admission. A focus on health status, risk factors and clinical interventions may camouflage critical issues within a patient-clinician exchange. This approach may provide a way forward to reduce the appalling health disadvantage experienced within the Indigenous Australian communities. Keywords: Patient-clinician engagement, Qualitative, Cardiovascular disease, Focus groups, Indigenous

Self-management of chemotherapy-related nausea and vomiting : a cross-sectional survey of Chinese cancer patients

BACKGROUND Chemotherapy-induced nausea and vomiting (CINV) remain prevalent among cancer patients despite pharmacological advances in CINV therapy. Patients can initiate nonpharmacologic strategies, which potentially play an important role as adjuncts to pharmacological agents in alleviating CINV. Some studies have explored nausea and vomiting self-management (NVSM) behaviors among patients in Western settings; however, little is known about the NVSM behaviors of patients in China. OBJECTIVES This study examines NVSM behaviors of Chinese cancer patients. METHODS A cross-sectional survey was conducted in a specialist cancer hospital in southeast China. RESULTS A sample of 255 cancer patients was recruited. A mean of 8.56 (±3.15) NVSM behaviors was reported. Most NVSM behaviors were rated as moderately effective and were implemented with moderate self-efficacy. Higher distress levels, better functional status, previous similar symptom experiences, receiving chemotherapy as an inpatient, and greater support from multiple levels were related to greater engagement in NVSM; higher self-efficacy levels pertaining to NVSM behaviors were associated with reports of more relief from specific NVSM behaviors. CONCLUSIONS A range of NVSM strategies was initiated by Chinese cancer patients and provided some relief. A range of individual, health status, and environmental factors influenced engagement with and relief from NVSM behaviors. IMPLICATIONS FOR PRACTICE To enhance Chinese patients' NVSM, patients should be supported to engage in behaviors including taking antiemetics, modifying their diet, using psychological strategies, and creating a pleasant environment. The findings highlight the importance of enhancing patients' self-efficacy in NVSM, alleviating symptom distress, and improving social support to achieve better outcomes.

Rural self-reliance: the impact on health experiences of people living with type II diabetes in rural Queensland, Australia

Objective: The objective of the study was to explore whether and how rural culture influences type II diabetes management and to better understand the social processes that rural people construct in coping with diabetes and its complications. In particular, the study aimed to analyse the interface and interactions between rural people with type II diabetes and the Australian health care system, and to develop a theoretical understanding that reflects constructs that may be more broadly applicable. Methods: The study applied constructivist grounded theory methods within an interpretive interactionist framework. Data from 39 semi-structured interviews with rural and urban type II diabetes patients and a mix of rural health care providers were analysed to develop a theoretical understanding of the social processes that define diabetes management in that context. Results: The analysis suggests that although type II diabetes imposes limitations that require adjustment and adaptation, these processes are actively negotiated by rural people within the environmental context to fit the salient social understandings of autonomy and self-reliance. Thus, people normalized self-reliant diabetes management behaviours because this was congruent with the rural culture. Factors that informed the actions of normalization were relationships between participants and health care professionals, support, and access to individual resources. Conclusions: The findings point to ways in which rural self-reliance is conceived as the primary strategy of diabetes management. People face the paradox of engaging with a health care system that at the same time maximizes individual responsibility for health and minimizes the social support by which individuals manage the condition. The emphasis on self-reliance gives some legitimacy to a lack of prevention and chronic care services. Success of diabetes management behaviours is, however, contingent on relative resources. Where there is good primary care, there develops a number of downstream effects including a sense of empowerment to manage difficult rural environmental circumstances. This has particular bearing on health outcomes for people with fewer resources.

Pharmacist, general practitioner, and nurse perceptions, experiences, and knowledge of medication dosage form modification

Background: People often modify oral solid dosage forms when they experience difficulty swallowing them. Modifying dosage forms may cause adverse effects to the patient, and the person undertaking the modification. Pharmacists are often the first point of contact for people in the general community seeking advice regarding medications. Nurses are at the forefront of administering medications to patients and are likely to be most directly affected by a patient’s swallowing ability, while general practitioners (GPs) are expected to consider swallowing abilities when prescribing medications. Objective: To compare the perspectives and experiences of GPs, pharmacists, and nurses regarding medication dosage form modification and their knowledge of medication modification. Method: Questionnaires tailored to each profession were posted to 630 GPs, and links to an online version were distributed to 2,090 pharmacists and 505 nurses. Results: When compared to pharmacists and GPs, nurses perceived that a greater proportion of the general community modified solid dosage forms. Pharmacists and GPs were most likely to consider allergies and medical history when deciding whether to prescribe or dispense a medicine, while nurses’ priorities were allergies and swallowing problems when administering medications. While nurses were more likely to ask their patients about their ability to swallow medications, most health professionals reported that patients “rarely” or “never” volunteered information about swallowing difficulties. The majority of health professionals would advise a patient to crush or split noncoated non-sustained-release tablets, and would consult colleagues or reference sources for sustained-release or coated tablets. Health professionals appeared to rely heavily upon the suffix attached to medication names (which suggest modified release properties) to identify potential problems associated with modifying medications. Conclusion: The different professional roles and responsibilities of GPs, pharmacists, and nurses are associated with different perspectives of, and experiences with, people modifying medications in the general community and knowledge about consequences of medication modification.

End-of-life care in the intensive care unit : a systematic review of qualitative studies investigating the experiences and perceptions of the patient's family

Review question/objective The review objective is to synthesise the best available evidence on experiences and perceptions of family members of intensive care unit patients on the adequacy of end-of-life care, where life-support modalities have been withheld or withdrawn. Inclusion criteria Types of participants This review will consider studies that report on the experiences and perceptions of patients’ families on EOLC in the ICU, where life-support modalities have been withheld or withdrawn. The family is defined as “those who are closest to the patient... the family may include the biological family, family by acquisition, and the family of choice and friends”. Phenomena of interest The phenomena of interest for this review are the patients’ families experiences, perceptions or views on the adequacy of EOLC delivered in the ICU, where life-support modalities were withheld or withdrawn. These experiences may refer to the following views on domains of care considered important at the end-of-life in the ICU, which have been described already in the existing literature: timely, consistent, and compassionate communication, clinician availability, clinical decision making based on patients’ preferences, goals and values, physical care implemented to maintain patient comfort, holistic interdisciplinary care and bereavement care for families of patients who died.

Latent class analysis reveals distinct subgroups of patients based on symptom occurrence and demographic and clinical characteristics

Context Cancer patients experience a broad range of physical and psychological symptoms as a result of their disease and its treatment. On average, these patients report ten unrelieved and co-occurring symptoms. Objectives To determine if subgroups of oncology outpatients receiving active treatment (n=582) could be identified based on their distinct experience with thirteen commonly occurring symptoms; to determine whether these subgroups differed on select demographic, and clinical characteristics; and to determine if these subgroups differed on quality of life (QOL) outcomes. Methods Demographic, clinical, and symptom data from one Australian and two U.S. studies were combined. Latent class analysis (LCA) was used to identify patient subgroups with distinct symptom experiences based on self-report data on symptom occurrence using the Memorial Symptom Assessment Scale (MSAS). Results Four distinct latent classes were identified (i.e., All Low (28.0%), Moderate Physical and Lower Psych (26.3%), Moderate Physical and Higher Psych (25.4%), All High (20.3%)). Age, gender, education, cancer diagnosis, and presence of metastatic disease differentiated among the latent classes. Patients in the All High class had the worst QOL scores. Conclusion Findings from this study confirm the large amount of interindividual variability in the symptom experience of oncology patients. The identification of demographic and clinical characteristics that place patients are risk for a higher symptom burden can be used to guide more aggressive and individualized symptom management interventions.