'Unbearable suffering': a qualitative study on the perspectives of patients who request assistance in dying

BACKGROUND One of the objectives of medicine is to relieve patients' suffering. As a consequence, it is important to understand patients' perspectives of suffering and their ability to cope. However, there is poor insight into what determines their suffering and their ability to bear it. PURPOSE To explore the constituent elements of suffering of patients who explicitly request euthanasia or physician-assisted suicide (EAS) and to better understand unbearable suffering from the patients' perspective. PATIENTS AND METHODS A qualitative study using in-depth face-to-face interviews was conducted with 31 patients who had requested EAS. The grounded theory approach was used to analyse the data. RESULTS Medical, psycho-emotional, socio-environmental and existential themes contributed to suffering. Especially fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness and being tired of living were constituent elements of unbearable suffering. Only patients with a psychiatric (co)diagnosis suffered unbearably all the time. CONCLUSIONS Unbearable suffering is the outcome of an intensive process that originates in the symptoms of illness and/or ageing. According to patients, hopelessness is an essential element of unbearable suffering. Medical and social elements may cause suffering, but especially when accompanied by psycho-emotional and existential problems suffering will become 'unbearable'. Personality characteristics and biographical aspects greatly influence the burden of suffering. Unbearable suffering can only be understood in the continuum of the patients' perspectives of the past, the present and expectations of the future.This study was supported by the Dutch Cancer Society (grant number KUN2007-03736)

Factors Affecting The Efficiency Of Fox (Vulpes Vulpes) Baiting Practices On The Central Tablelands Of New South Wales

The European red fox (Vulpes vulpes L.) is a well known predator of native species and domestic stock, and is recognised as one of Australia’s most devastating vertebrate pests. Current fox management relies heavily on poisoning using baits impregnated with sodium monofluoroacetate (1080). This reliance on 1080 is likely to continue given the lack of viable alternatives for controlling foxes, so that, in the meanwhile, it is important to improve the efficiency of the current techniques. Factors affecting the susceptibility of individual foxes to bait include their ability to locate it, as well as the bait’s palatability and toxicity. The economic costs associated with using different bait types, the pattern and density of their distribution will also affect the efficiency of control programs. It is essential to examine and refine all such issues to ensure efficient use of the 1080 baiting technique. This thesis focuses generally on problems associated with management of the fox in eastern Australia. More specifically, I investigate the factors affecting the efficiency of fox baiting practices on the central tablelands of New South Wales. The study was conducted largely on agricultural lands near the town of Molong (33010’ 37”S, 148087’15”E) on the central tablelands of New South Wales. This area was chosen as it is broadly representative, in terms of land use, of a large region of eastern Australia. The highly modified, predominantly agricultural landscapes near Molong are well suited to foxes, and conflict with the predominantly pastoral community means that fox management is widely undertaken. I determined the persistence of 1080 in two commonly used bait types, Foxoff® and chicken wingettes, under different climatic and rainfall conditions. The rate of 1080 degradation did not change significantly between the central tablelands and the relatively hotter and drier western slopes. Foxoff® baits remained lethal for longer than wingettes under all conditions, although their rate of degradation generally increased with increasing rainfall. I confirmed the presence of defluorinating micro-organisms in thesoils of eastern Australia for the first time, and suggest that, following removal from the bait, 1080 would not persist in the environment for long. Bait should be attractive and highly palatable to ensure that the target species will find and consume it upon discovery. Caching, where discovered food is removed but not immediately consumed, may potentially reduce the efficacy and cost-effectiveness of baiting campaigns. I quantified the caching of chicken wingette, day-old chick and Foxoff® baits by inserting transmitters into bait material and assessing whether it was eaten or cached following removal. The intensity of caching did not change significantly between seasons. Type of bait had the largest influence on caching intensity, with a greater percentage of non-toxic Foxoff® baits (66.9%) being cached than either wingettes (5.7%) or day-old chicks (4.5%). The percentage of toxic (1080) baits cached was even greater, suggesting that 1080 bait may be less palatable, and detectable to foxes. I also investigated the use of conditioned taste aversion to reduce multiple bait uptake by foxes. Levamisole, an illness-inducing chemical, was added to bait and the fate of removed bait was again monitored via radio-telemetry. Following consumption of a levamisole-treated bait, foxes avoided eating treated baits but consumed untreated baits. I concluded that a reduction in bait consumption was achieved through learned aversion to levamisole rather than via conditioned taste aversion to baits. Adding levamisole to baits, especially non-toxic bait such as rabies vaccines, could potentially be used to reduce bait monopolisation by individual foxes. Fox density and den site preferences were assessed by investigating the distribution and density of fox natal dens on one property (9.6 km2) over three consecutive years. A total of 9 natal dens were located in 2000 and 2001, declining to 6 in 2002. No preference was shown for den sites on the basis of habitat, slope or aspect, but more dens were located under, or adjacent to cover. Assuming that each natal den represents a breeding pair and that the population sex ratio did not differ from parity (1:1), the site contained a prebreeding density of 1.9 foxes/km2 in 2000 and 2001, and 1.25 foxes/km2 in 2002. Given that the mean number of cubs is 4.0, the post-breeding density was estimated at 5.6 and 3.75 foxes/km2 in 2000/2001 and 2002, respectively. The results demonstrated that high densities of foxes occur on agricultural lands. The success and likely accuracy of the technique to monitor fox density suggests that it may be used to calibrate more efficient abundance estimates that will be essential for the strategic management of foxes in future. Pest animal management strategies are traditionally assessed for their effectiveness, with less consideration being given to the efficiency or cost of achieving the desired effect. I used cost-effectiveness analyses to compare between different baiting strategies based on the longevity, palatability and handling/replacement costs associated with each bait type. The results indicated that, when measured on a total cost-per-bait-consumed basis, wingettes and day-old chicks were the most cost-effective baits for campaigns of up to 4 weeks duration. This demonstrates the importance of including the longevity, and particularly the palatability of bait, when assessing cost-effectiveness. However, it is recognised that other factors, including the consistency of dosage and uptake by nontarget species, may be equally or more important in deciding the appropriate baiting strategy. The spatial and temporal application of fox baiting in the region overseen by the Molong Rural Lands Protection Board was examined between January 1998 and December 2002 as a case study to evaluate the apparent effectiveness of cooperative management practices. Most landholders (78.8%) did not bait for foxes during this period. Based on known dispersal distances, the effect of fox immigration into baited areas was determined. The results indicated that no areas baited for foxes were separated by a sufficient buffer distance (>9.58 km) from unbaited areas to be protected from fox immigration. This suggests that, at current levels of coordination, the effectiveness of most baiting operations in eastern Australia is compromised over the long term by fox immigration. However, it is recognised that short-term reductions in fox density may sometimes be all that are required to reduce predation to acceptable levels, especially for seasonally-susceptible prey. Ultimately, the cost-effectiveness of control should be evaluated in terms of the response of the prey rather than that of the predator. This study has highlighted deficiencies in current ‘best-practice’ baiting techniques. Specific recommendations for current baiting practices, in addition to future research, are also given. In brief, these include minimising free-feed baiting, increasing the minimum distance between bait stations, and, where possible, presenting the most palatable bait. Continued research into conditioned taste aversion, aerial baiting, and techniques to reduce caching are recommended as potential techniques to improve the efficiency of baiting practices

Low temperature adaption of wheat post head-emergence in northern Australia

OBJECTIVE: More than 50% of patients with cancer experience pain. Patient empowerment has been highlighted as central to success in pain management. Up to now, no clear model for this patient group exists, yet several strategies to empower patients have been used in clinical practice. This review examines how empowerment or related concepts have been described in relation to pain management in patients with cancer. With the help of a conceptual model, recommendations for clinical practice are provided. METHODS: An integrative review was conducted, using the databases PubMed, CINAHL and PsycINFO. We evaluated papers discussing empowerment or related concepts in relation to pain management in patients with cancer. We analyzed the term 'empowerment' semantically. RESULTS: From a total of 5984 identified papers, 34 were included for analysis. Empowerment has been described with the concepts self-efficacy, active patient participation, increasing abilities, and control of life. Most papers focus on pain treatment induced by the professional caregiver or on the active involvement of the patient, and not on the combination of both. The following elements of empowerment could be discriminated: role of the patient, role of the professional, resources, self-efficacy, active coping, and shared decision making. CONCLUSIONS: On the basis of these findings, we propose a conceptual model to empower patients in controlling cancer pain. We recommend focusing on pain treatment given by the professional, on the active involvement of the patient, and on the interaction of both. Our model might also be useful for other patient groups or specific contexts, especially in symptom management. Copyright (c) 2014 John Wiley & Sons, Ltd

Calendar 2015

Item does not contain fulltextBACKGROUND: Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs. METHODS: Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes. RESULTS: The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services. CONCLUSION: In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach

Systematic care for caregivers of people with dementia in the ambulatory mental health service: designing a multicentre, cluster, randomized, controlled trial

Contains fulltext : 81435.pdf (publisher's version ) (Open Access)BACKGROUND: Care for people with dementia and their informal caregivers is a challenging aim in healthcare. There is an urgent need for cost-effective support programs that prevent informal caregivers of people with dementia from becoming overburdened, which might result in a delay or decrease of patient institutionalization. For this reason, we have developed the Systematic Care Program for Dementia (SCPD). The SCPD consists of an assessment of caregiver's sense of competence and suggestions on how to deal with competence deficiencies. The efficiency of the SCPD will be evaluated in our study. METHODS AND DESIGN: In our ongoing, cluster, randomized, single-blind, controlled trial, the participants in six mental health services in four regions of the Netherlands have been randomized per service. Professionals of the ambulatory mental health services (psychologists and social psychiatric nurses) have been randomly allocated to either the intervention group or the control group. The study population consists of community-dwelling people with dementia and their informal caregivers (patient-caregiver dyads) coming into the health service. The dyads have been clustered to the professionals. The primary outcome measure is the patient's admission to a nursing home or home for the elderly at 12 months of follow-up. This measure is the most important variable for estimating cost differences between the intervention group and the control group. The secondary outcome measure is the quality of the patient's and caregiver's lives. DISCUSSION: A novelty in the SCPD is the pro-active and systematic approach. The focus on the caregiver's sense of competence is relevant to economical healthcare, since this sense of competence is an important determinant of delay of institutionalization of people with dementia. The SCPD might be able to facilitate this with a relatively small cost investment for caregivers' support, which could result in a major decrease in costs in the management of dementia. Implementation on a national level will be started if the SCPD proves to be efficient. TRIAL REGISTRATION: NCT00147693

No difference in effects of ‘PACE steps to success’ palliative care program for nursing home residents with and without dementia : a pre-planned subgroup analysis of the seven-country PACE trial

Background: 'PACE Steps to Success' is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents' comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia. Methods: Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous 4 months. The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying-End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome). Results: At baseline, we included 177 residents with advanced dementia, 126 with non-advanced dementia and 156 without dementia. Post-intervention, respectively in the control and the intervention group, we included 136 and 104 residents with advanced dementia, 167 and 110 with non-advanced dementia and 157 and 137 without dementia. We found no subgroup differences on comfort in the last week of life, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value = 0.177), non-advanced versus without dementia (2.7; p = 0.092), and advanced versus non-advanced dementia (- 0.6; p = 0.698); or on quality of care and dying in the last month of life, comparing advanced and without dementia (- 0.6; p = 0.741), non-advanced and without dementia (- 1.5; p = 0.428), and advanced and non-advanced dementia (0.9; p = 0.632). Conclusions: The lack of subgroup difference suggests that while the program did not improve comfort in dying residents with or without dementia, it appeared to equally improve quality of care and dying in the last month of life for residents with dementia (regardless of the stage) and those without dementia. A generalist and non-disease-specific palliative care program, such as PACE Steps to Success, is a useful starting point for future palliative care improvement in nursing homes, but to effectively improve residents' comfort, this program needs further development

General Practitioners’ perceptions of the stigma of dementia and the role of reciprocity

YesA qualitative exploration of the stigma of dementia reported that GPs described lack of reciprocity as one way in which people with dementia are perceived within society. This was closely linked to their perception of dementia as a stigma. In this paper, we explore whether GPs perceive people with dementia as lacking reciprocity and, so, if this is linked with societal opinions about dementia as a stigma. The implications of both perceptions of people with dementia failing to reciprocate and of stigma for timely diagnosis are explored. GPs’ perceptions of societal views of people with dementia included a perception of a lack of reciprocity. Specifically, an absence of reciprocity was linked with; failing to respond to human contact, the absence of an appropriate return on social investment and failing to contribute to, or being a burden to, society. GPs reported a link between societal perceptions of lack of reciprocity and stereotypes about advanced dementia, difficulties communicating with people with dementia and lack of opportunities for people with dementia to reciprocate. GPs occupy a key position, they can challenge stereotypes and, with support and targeted training about communicating with people living with dementia, can emphasise the ways in which people with dementia can communicate, thereby enhancing their potential to reciprocate. Such changes have implications for improved care and quality of life through the continued maintenance of social inclusion and perceptions of personhood.non

Appropriate disclosure of a diagnosis of dementia : identifying the key behaviours of 'best practice'

Background: Despite growing evidence that many people with dementia want to know their diagnosis, there is wide variation in attitudes of professionals towards disclosure. The disclosure of the diagnosis of dementia is increasingly recognised as being a process rather than a one-off behaviour. However, the different behaviours that contribute to this process have not been comprehensively defined. No intervention studies to improve diagnostic disclosure in dementia have been reported to date. As part of a larger study to develop an intervention to promote appropriate disclosure, we sought to identify important disclosure behaviours and explore whether supplementing a literature review with other methods would result in the identification of new behaviours. Methods: To identify a comprehensive list of behaviours in disclosure we conducted a literature review, interviewed people with dementia and informal carers, and used a consensus process involving health and social care professionals. Content analysis of the full list of behaviours was carried out. Results: Interviews were conducted with four people with dementia and six informal carers. Eight health and social care professionals took part in the consensus panel. From the interviews, consensus panel and literature review 220 behaviours were elicited, with 109 behaviours over-lapping. The interviews and consensus panel elicited 27 behaviours supplementary to the review. Those from the interviews appeared to be self-evident but highlighted deficiencies in current practice and from the panel focused largely on balancing the needs of people with dementia and family members. Behaviours were grouped into eight categories: preparing for disclosure; integrating family members; exploring the patient's perspective; disclosing the diagnosis; responding to patient reactions; focusing on quality of life and well-being; planning for the future; and communicating effectively. Conclusion: This exercise has highlighted the complexity of the process of disclosing a diagnosis of dementia in an appropriate manner. It confirms that many of the behaviours identified in the literature (often based on professional opinion rather than empirical evidence) also resonate with people with dementia and informal carers. The presence of contradictory behaviours emphasises the need to tailor the process of disclosure to individual patients and carers. Our combined methods may be relevant to other efforts to identify and define complex clinical practices for further study.This project is funded by UK Medical Research Council, Grant reference number G0300999