Marianne Dees

Comprehensive and Integrated Palliative Care for People With Advanced Chronic Conditions: An Update From Several European Initiatives and Recommendations for Policy

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.

Understanding the Continuation of Potentially Inappropriate Medications at the End of Life: Perspectives from Individuals and Their Relatives and Physicians

To the Editor: Individuals with limited life expectancy often use a range of medications. These can be roughly divided into medications to treat or prevent (chronic) illnesses and those to reduce the burden of symptoms. The administration of medication with a focus on the prevention and treatment of illnesses should be reconsidered in the final stages of life (when a person’s life expectancy is months or weeks). In practice, reconsidering an individual’s medication use in the last phase of life seems to be rare. Therefore, people often take multiple medications that may not have beneficial effects in view of their limited life expectancy and changing organ function: potentially inappropriate medications (PIMs). PIMs may cause different side effects and place the burden of taking them on people. In addition, the use of PIMs involves costs. Factors contributing to the use of PIMs in the last stage of life are largely unknown. An interview study was performed to identify such factors from the perspectives of older adults and their relatives and physicians.

Evaluation of nurses' changing perceptions when trained to implement a self-management programme for dual sensory impaired older adults in long-term care: a qualitative study

Objectives To gain insights into the process of nurses’ changing perceptions when trained to implement a self-management programme for dual sensory impaired older adults in long-term care, and into the factors that contributed to these changes in their perceptions. Design Qualitative study alongside a cluster randomised controlled trial. Setting 17 long-term care homes spread across the Netherlands. Participants 34 licensed practical nurses supporting 54 dual sensory impaired older adults. Intervention A 5-month training programme designed to enable nurses to support the self-management of dual sensory impaired older adults in long-term care. Primary outcomes Nurses’ perceptions on relevance and feasibility of the self-management programme collected from nurses’ semistructured coaching diaries over the 5-month training and intervention period, as well as from trainers’ reports. Results Nurses’ initial negative perceptions on relevance and feasibility of the intervention changed to positive as nurses better understood the concept of autonomy. Through interactions with older adults and by self-evaluations of the effect of their behaviour, nurses discovered that their usual care conflicted with client autonomy. From that moment, nurses felt encouraged to adapt their behaviour to the older adults’ autonomy needs. However, nurses’ initial unfamiliarity with conversation techniques required a longer exploration period than planned. Once client autonomy was understood, nurses recommended expanding the intervention as a generic approach to all their clients, whether dual sensory impaired or not. Conclusions Longitudinal data collection enabled exploration of nurses’ changes in perceptions when moving towards self-management support. The training programme stimulated nurses to go beyond ‘protocol thinking’, discovering client autonomy and exploring the need for their own behavioural adaptations. Educational programmes for practical nurses should offer more longitudinal coaching of autonomy supportive conversational skills. Intervention programming should acknowledge that change is a process rather than an event, and should include self-evaluations of professional behaviours over a period of time. Trial registration number NCT01217502, Post-results.

General practitioners’ perspectives on management of early-stage chronic kidney disease: a focus group study

BackgroundGuideline adherence in chronic kidney disease management is low, despite guideline implementation initiatives. Knowing general practitioners’ (GPs’) perspectives of management of early-stage chronic kidney disease (CKD) and the applicability of the national interdisciplinary guideline could support strategies to improve quality of care.MethodQualitative focus group study with 27 GPs in the Netherlands. Three analysts open-coded and comparatively analysed the data. Mind-mapping sessions were performed after data-saturation.ResultsFive themes emerged: defining CKD, knowledge and awareness, patient-physician interaction, organisation of CKD care and value of the guideline. A key finding was the abstractness of the CKD concept. The GPs expressed various perspectives about defining CKD and interpreting estimated glomerular filtration rates. Views about clinical relevance influenced the decision-making, although factual knowledge seems lacking. Striving to inform well enough without creating anxiety and to explain suitably for the intellectual ability of the patient caused tension in the patient-physician interaction. Integration with cardiovascular disease-management programmes was mentioned as a way of implementing CKD care in the future. The guideline was perceived as a rough guide rather than a leading document.ConclusionCKD is perceived as an abstract rather than a clinical concept. Abstractness plays a role in all formulated themes. Management of CKD patients in primary care is complex and is influenced by physician-bound considerations related to individual knowledge and perception of the importance of CKD. Strategies are needed to improve GPs’ understanding of the concept of CKD by education, a holistic approach to guidelines, and integration of CKD care into cardiovascular programmes.Trial registrationNot applicable.

Problems identified by dual sensory impaired older adults in long-term care when using a self-management program: A qualitative study

Objective To gain insights into the problems of dual sensory impaired older adults in long-term care. Insights into these problems are essential for developing adequate policies which address the needs of the increasing population of dual sensory impaired older adults in long-term care. Methods A qualitative study was conducted in parallel with a cluster randomized controlled trial. Dual sensory impaired older adults in the intervention group (n = 47, age range 82–98) were invited by a familiar nurse to identify the problems they wanted to address. Data were taken from the semi-structured intervention diaries in which nurses noted the older adults’ verbal responses during a five-month intervention period in 17 long-term care homes across the Netherlands. The data were analyzed using descriptive statistics and qualitative content analysis based on the Grounded Theory. Findings The 47 dual sensory impaired older adults identified a total of 122 problems. Qualitative content analysis showed that the older adults encountered participation problems and problems controlling what happens in their personal environment. Three categories of participation problems emerged: (1) existential concerns of not belonging or not being able to connect with other people, (2) lack of access to communication, information and mobility, and (3) the desire to be actively involved in care delivery. Two categories of control-in-personal-space problems emerged: (1) lack of control of their own physical belongings, and (2) lack of control regarding the behavior of nurses providing daily care in their personal environment. Conclusions The invasive problems identified indicate that dual sensory impaired older adults experience great existential pressures on their lives. Long-term care providers need to develop and implement policies that identify and address these problems, and be aware of adverse consequences of usual care, in order to improve dual sensory impaired residents’ autonomy and quality of life.

Teleconsultatie: optimalisering van palliatieve thuiszorg?

SamenvattingVan Gurp J, Dees M. Teleconsultatie: optimalisering van palliatieve thuiszorg? Huisarts Wet 2017;60(11):573-6. Moderne communicatietechnologieën, zoals e-mail, internet en de mobiele telefoon, hebben de afgelopen drie decennia snel hun intrede in de huisartsenpraktijk gedaan. Allemaal vragen ze om nieuwe communicatievormen en -normen. Zo ook een van de meest recente toepassingen: videoconsultatie met patiënten. Deze beschouwing beschrijft de ervaringen met videoconsultaties in een context waarin technologie alom gevreesd wordt om zijn onpersoonlijke karakter: bij palliatieve zorg thuis. We laten zien hoe, in deze context, videoconsultatie zorg- en werkrelaties beïnvloedt.

Shared decision making bij huisartsconsulten

SamenvattingBij shared decision making (SDM) participeren patiënt en arts beiden in het besluitvormingsproces om gezamenlijk tot een behandeling te komen. Uit Utrechts onderzoek blijkt dat SDM-training effect heeft op de intakefase. Bij het nemen van het behandelingsbesluit zelf grijpen artsen terug op een paternalistische, richtlijngeoriënteerde attitude. De SDM-consulten duurden 20% langer.

Ja, dat moet nu

SamenvattingHet is de laatste patiënt in de dienst. U opent het dossier en zucht. Een vrouw die suïcidaal is. Dan bekruipt je soms het gevoel: moet dat nu? Kan dat niet wachten tot morgen?

Stilstaan bij gezondheid

SamenvattingVraagt u patiënten weleens wat zij onder gezondheid verstaan? Ik heb dat recent gedaan en zij bleken daar heel andere ideeën over te hebben dan ik.

Rol huisarts bij palliatieve zorg voor kinderen met kanker

SamenvattingVan de kinderen met kanker overlijdt 25%. De meesten sterven thuis. De emotionele impact op naasten en huisarts is groot en de incidentie is laag. Huisartsen hebben weinig ervaring met deze indringende gebeurtenis. Pediatrische palliatieve zorg in de thuissituatie vraagt intensieve samenwerking tussen de eerste en tweede lijn en binnen de eerste lijn. De beschikbaarheid van pediatrisch palliatieve consultatie is een vereiste.