Due to the disease's progressive nature, advance care planning (ACP) is recommended for people with early stage dementia. General practitioners (GPs) should initiate ACP because of their longstanding ...relationships with their patients and their early involvement with the disease, however ACP is seldom applied.
To determine the barriers and facilitators faced by GPs related to ACP with people with dementia.
We systematically searched the relevant databases for papers published between January 1995 and December 2016, using the terms: primary healthcare, GP, dementia, and ACP. We conducted a systematic integrative review following Whittemore and Knafl's method. Papers containing empirical data about GP barriers and/or facilitators regarding ACP for people with dementia were included. We evaluated quality using the Mixed-Method-Appraisal-Tool and analyzed data using qualitative content analysis.
Ten qualitative, five quantitative, and one mixed-method paper revealed four themes: timely initiation of ACP, stakeholder engagement, important aspects of ACP the conversation, and prerequisites for ACP. Important barriers were: uncertainty about the timing of ACP, how to plan for an uncertain future, lack of knowledge about dementia, difficulties assessing people with dementia's decisional capacities, and changing preferences. Facilitators for ACP were: an early start when cognitive decline is still mild, inclusion of all stakeholders, and discussing social and medical issues aimed at maintaining normal life.
Discussing future care is difficult due to uncertainties about the future and the decisional capacities of people with dementia. Based on the facilitators, we recommend that GPs use a timely and goal-oriented approach and involve all stakeholders. ACP discussions should focus on the ability of people with dementia to maintain normal daily function as well as on their quality of life, instead of end-of-life-discussions only. GPs need training to acquire knowledge and skills to timely initiate collaborative ACP discussions.
ACP enables individuals to define and discuss goals and preferences for future medical treatment and care with family and healthcare providers, and to record these goals and preferences if ...appropriate. Because general practitioners (GPs) often have long-lasting relationships with people with dementia, GPs seem most suited to initiate ACP. However, ACP with people with dementia in primary care is uncommon. Although several barriers and facilitators to ACP with people with dementia have already been identified in earlier research, evidence gaps still exist. We therefore aimed to further explore barriers and facilitators for ACP with community-dwelling people with dementia.
A qualitative design, involving all stakeholders in the care for community-dwelling people with dementia, was used. We conducted semi-structured interviews with community dwelling people with dementia and their family caregivers, semi structured interviews by telephone with GPs and a focus group meeting with practice nurses and case managers. Content analysis was used to define codes, categories and themes.
Ten face to face interviews, 10 interviews by telephone and one focus group interview were conducted. From this data, three themes were derived: development of a trust-based relationship, characteristics of an ACP conversation and the primary care setting. ACP is facilitated by a therapeutic relationship between the person with dementia/family caregiver and the GP built on trust, preferably in the context of home visits. Addressing not only medical but also non-medical issues soon after the dementia diagnosis is given is an important facilitator during conversation. Key barriers were: the wish of some participants to postpone ACP until problems arise, GPs' time restraints, concerns about the documentation of ACP outcomes and concerns about the availability of these outcomes to other healthcare providers.
ACP is facilitated by an open relationship based on trust between the GP, the person with dementia and his/her family caregiver, in which both medical and non-medical issues are addressed. GPs' availability and time restraints are barriers to ACP. Transferring ACP tasks to case managers or practice nurses may contribute to overcoming these barriers.
Abstract
Background
Expectations can enhance the intensity and the neural processing of breathlessness. Previous breathlessness episodes may influence the perception of subsequent episodes because of ...psycho-traumatic consequences. In post-traumatic stress disorder, eye movement desensitization and reprocessing (EMDR) is the therapy of choice.
Aims and objectives
We explored the hypothesis that EMDR in patients with chronic obstructive pulmonary disease (COPD) and previous severe breathlessness episodes, improves breathlessness mastery by decreasing the anxiety component.
Methods
As we found no literature on previous research on this subject, we undertook a qualitative case series on four patients with COPD GOLD 4/D and refractory breathlessness who wished to undergo EMDR for psychotraumatic breathlessness episodes. Amongst others, we used the Chronic Respiratory Disease Questionnaire (CRQ) before and after EMDR, and semi-structured, face-to-face, in-depth interviews.
Results
All patients had between three and five EMDR sessions. On CRQ, subset mastery, three patients had a large improvement and one patient a moderate improvement. On subset emotional functioning, three patients showed a large improvement and one showed no change. All patients made a distinction between ‘regular’ breathlessness and breathlessness intertwined with anxiety. They all stated that the anxiety component of their breathlessness diminished or disappeared. All four would recommend EMDR for other COPD patients.
Conclusion
There is ground for a randomized controlled clinical trial to test the effects of EMDR on breathlessness mastery in a subset of COPD patients with previous severe breathlessness episodes and high levels of anxiety.
Background:
Nursing homes are among the most common places of death in many countries.
Aim:
To determine the quality of dying and end-of-life care of nursing home residents in six European countries.
...Design:
Epidemiological survey in a proportionally stratified random sample of nursing homes. We identified all deaths of residents of the preceding 3-month period. Main outcomes: quality of dying in the last week of life (measured using End-of-Life in Dementia Scales – Comfort Assessment while Dying (EOLD-CAD)); quality of end-of-life care in the last month of life (measured using Quality of Dying in Long-Term Care (QoD-LTC) scale). Higher scores indicate better quality.
Setting/participants:
Three hundred and twenty-two nursing homes in Belgium, Finland, Italy, the Netherlands, Poland and England. Participants were staff (nurses or care assistants) most involved in each resident’s care.
Results:
Staff returned questionnaires regarding 1384 (81.6%) of 1696 deceased residents. The End-of-Life in Dementia Scales – Comfort Assessment while Dying mean score (95% confidence interval) (theoretical 14–42) ranged from 29.9 (27.6; 32.2) in Italy to 33.9 (31.5; 36.3) in England. The Quality of Dying in Long-Term Care mean score (95% confidence interval) (theoretical 11–55) ranged from 35.0 (31.8; 38.3) in Italy to 44.1 (40.7; 47.4) in England. A higher End-of-Life in Dementia Scales – Comfort Assessment while Dying score was associated with country (p = 0.027), older age (p = 0.012), length of stay ⩾1 year (p = 0.034), higher functional status (p < 0.001). A higher Quality of Dying in Long-Term Care score was associated with country (p < 0.001), older age (p < 0.001), length of stay ⩾1 year (p < 0.001), higher functional status (p = 0.002), absence of dementia (p = 0.001), death in nursing home (p = 0.033).
Conclusion:
The quality of dying and quality of end-of-life care in nursing homes in the countries studied are not optimal. This includes countries with high levels of palliative care development in nursing homes such as Belgium, the Netherlands and England.
Background: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an ...important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands.
Methods: Focus group interviews were conducted with healthcare professionals who, after being trained, applied the SDM framework. Content analysis was used to analyze the data.
Results: Six months after the feasibility trial, focus group interviews with healthcare professionals (n = 10 in Italy; n = 9 in the Netherlands) were held. We found 6 themes and 15 categories. Within these themes, facilitators and barriers were identified. The categories of team collaboration, communication skills and nursing home policy were found to be facilitators to the implementation process, whereas regulations, lack of funding and of involvement of family caregivers were the main barriers. Family attitudes towards SDM could be both. The main difference between countries concerned the residents' cognitive status that influenced their degree of involvement.
Conclusion: Communication skills training for professionals, training of family caregivers, and involvement of the management in the implementation process seem to be crucial factors in successfully implementing SDM in nursing homes, and increasing the involvement of families and dementia residents in decision-making.
Advance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general ...practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care.
A single-blinded cluster randomized controlled trial.
In 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged ≥65 years at any stage and with any type of dementia, from their practice.
Intervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering.
38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) odds ratio (OR) 1.99; P = .002. Intervention group GPs discussed 0.8 more medical 95% confidence interval (CI) 0.3, 1.3; P = .003 and 1.5 more nonmedical (95% CI 0.8, 2.3; P < .001) preferences per person with dementia than control group GPs.
Our educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown.
Refractory breathlessness is a devastating symptom in chronic obstructive pulmonary disease (COPD). Symptom-focused breathlessness services, involving palliative care teams, offer individualized ...support but are not yet widely available for people with nonmalignant disease among which COPD. Our primary aim was to demonstrate the feasibility of setting up a breathlessness service specifically for COPD patients within a respiratory outpatient clinic. Our secondary aims were to assess how many sessions patients need to complete the intervention; to obtain an indication of effect size (on the Chronic Respiratory Questionnaire (CRQ), subset mastery domain); and to evaluate patient and professional satisfaction. We conducted a non-randomized single-center feasibility study. Participants had COPD and refractory breathlessness. During at least one session with a respiratory nurse and a pulmonologist, and one session with a physiotherapist, patients learned non-pharmacological interventions to manage breathlessness. Of 34 screened patients, 19 were included. All completed the intervention. A median of two clinical visits and two telephone calls were needed to complete the intervention. The mean improvement of 1.55 in CRQ, mastery domain, significantly exceeded the clinically important difference of 0.5. The service was rated as excellent by the eight patients who completed the survey. The health professional team gave positive feedback on the experience of delivering the intervention. Delivery of a breathlessness service for COPD outpatients with refractory breathlessness appears feasible, easy to implement in a respiratory outpatient clinic, and has the potential to be effective. A randomized controlled clinical trial is needed to test effectiveness and cost-effectiveness in this context.
Abstract The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ ...failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system.
The clinical outcomes of Spinal Cord Stimulation (SCS) therapy in patients with a Failed Back Surgery Syndrome (FBSS) is mostly done by standardized pain and quality of life measurements instruments ...and hardly account for personal feelings and needs as a basis for a patient-centred approach and shared decision making.
The objective of this study is to explore perspectives on personal health and quality of life (QoL) in FBSS patients concerning their physical-, psychological and spiritual well-being prior to receiving an SCS system.
We performed face-to-face, semi-structured, in-depth interviews to obtain descriptive and detailed data on personal health, guided by the Web diagram of Positive Health (Huber et al.) and a topic list. The following main topics were assessed qualitatively: 1) Bodily functioning, 2) Mental function and perception 3) Spiritual dimension, 4) Quality of life, 5) Social and societal participation and 6) Daily functioning.
Seventeen FBSS patients (eight male, nine female) were included from April-November 2019 at the department of pain medicine in the Albert Schweitzer Hospital in the Netherlands. Median age 49 years; range 28 to 67 years, and patients underwent between one and five lumbar surgical operations. The duration of their chronic pain was between four and 22 years. After analyzing the interviews, three themes emerged: 1) dealing with chronic pain, 2) the current situation regarding aspects of positive health, and 3) future perspectives on health and quality of life. These themes arose from eleven categories and a hundred ninety codes.
This qualitative study explored FBSS patients 'views on their health and the ability to adapt to daily life having complex chronic pain, and showed that patients experienced shortcomings in daily life within the six dimensions of the Web diagram of Positive Health before the SCS implant.
According to the World Health Organization (WHO) definition, palliative care should be initiated in an early phase and not be restricted to terminal care. In the literature, no validated tools ...predicting the optimal timing for initiating palliative care have been determined.
The aim of this study was to systematically develop a tool for GPs with which they can identify patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and cancer respectively, who could benefit from proactive palliative care.
A three-step procedure, including a literature review, focus group interviews with input from the multidisciplinary field of palliative healthcare professionals, and a modified Rand Delphi process with GPs.
The three-step procedure was used to develop sets of indicators for the early identification of CHF, COPD, and cancer patients who could benefit from palliative care.
Three comprehensive sets of indicators were developed to support GPs in identifying patients with CHF, COPD, and cancer in need of palliative care. For CHF, seven indicators were found: for example, frequent hospital admissions. For COPD, six indicators were found: such as, Karnofsky score ≤50%. For cancer, eight indicators were found: for example, worse prognosis of the primary tumour.
The RADboud indicators for PAlliative Care Needs (RADPAC) is the first tool developed from a combination of scientific evidence and practice experience that can help GPs in the identification of patients with CHF, COPD, or cancer, in need of palliative care. Applying the RADPAC facilitates the start of proactive palliative care and aims to improve the quality of palliative care in general practice.
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