GPs' recognition of death in the foreseeable future and diagnosis of a fatal condition: a national survey

Background: Nowadays, palliative care is considered as a care continuum that may start early in the course of the disease. In order to address the evolving needs of patients for palliative care in time, GPs should be aware in good time of the diagnosis and of the imminence of death. The aim of the study was to gain insight into how long before a non-sudden death the diagnosis of the disease ultimately leading to death is made and on what kind of information the diagnosis is based. In addition, we aimed to explore when, and based on what kind of information, GPs become aware that death of a patient will be in the foreseeable future. Methods: A written questionnaire focusing on the GPs' experiences with their last patient who died non-suddenly was sent to a random representative sample of 850 GPs in the Netherlands. Results: The data were analysed of the 297 GPs who responded. 76% of the reported cases were cancer patients and 24% were patients with another non-sudden cause of death. The diagnosis was made only in the last week of life for 15% of the non-cancer patients and 1% of the patients with cancer. GPs were most likely to have been informed of the diagnosis by the medical specialist, although particularly in the case of non-cancer patients GPs also relied on their own assessment of the diagnosis or on other information sources. The GP remained unaware that the patient would die in the foreseeable future until the last week of life in 26% of the non-cancer group, while this was the case for only 6% of the cancer patients. GP's awareness was most likely to be based on the GP's own observations of problems and/or symptoms. Conclusions: The GP often only becomes aware of a fatal diagnosis and of death in the foreseeable future at a late stage in the disease trajectory, particularly in the case of non-cancer patients. It can be assumed that if the diagnosis and the nearing death are only recognised at a late stage, palliative care is either started at a very late stage or not at all

Is individual educational level related to end-of-life care use? : results from a nationwide retrospective cohort study in Belgium

Background: Educational level has repeatedly been identified as an important determinant of access to health care, but little is known about its influence on end-of-life care use. Objectives: To examine the relationship between individual educational attainment and end-of-life care use and to assess the importance of individual educational attainment in explaining differential end-of-life care use. Research Design: A retrospective cohort study via a nationwide sentinel network of general practitioners (GPs; SENTI-MELC Study) provided data on end-of-life care utilization. Multilevel analysis was used to model the association between educational level and health care use, adjusting for individual and contextual confounders based upon Andersen's behavioral model of health services use. Subjects: A Belgian nationwide representative sample of people who died not suddenly in 2005-2007. Results: In comparison to their less educated counterparts, higher educated people equally often had a palliative treatment goal but more often used multidisciplinary palliative care services (odds ratios [OR] for lower secondary education 1.28 [1.04-1.59] and for higher [secondary] education: 1.31 [1.02-1.68]), moved between care settings more frequently (OR: 1.68 [1.13-2.48] for lower secondary education and 1.51 [0.93-2.48] for higher [secondary] education) and had more contacts with the GP in the final 3 months of life. Conclusions: Less well-educated people appear to be disadvantaged in terms of access to specialist palliative care services, and GP contacts at the end of life, suggesting a need for empowerment of less well-educated terminally ill people regarding specialist palliative and general end-of-life care use

Physician reports of medication use with explicit intention of hastening the end of life in the absence of explicit patient request in general practice in Belgium

<p>Abstract</p> <p>Background</p> <p>Although the incidence of the use of life-ending drugs without explicit patient request has been estimated in several studies, in-depth empirical research on this controversial practice is nonexistent. Based on face-to-face interviews with the clinicians involved in cases where patients died following such a decision in general practice in Belgium, we investigated the clinical characteristics of the patients, the decision-making process, and the way the practice was conducted.</p> <p>Methods</p> <p>Mortality follow-back study in 2005-2006 using the nationwide Sentinel Network of General Practitioners, a surveillance instrument representative of all GPs in Belgium. Standardised face-to-face interviews were conducted with all GPs who reported a non-sudden death in their practice, at home or in a care home, which was preceded by the use of a drug prescribed, supplied or administered by a physican without an explicit patient request.</p> <p>Results</p> <p>Of the 2690 deaths registered by the GPs, 17 were eligible to be included in the study. Thirteen interviews were conducted. GPs indicated that at the time of the decision all patients were without prospect of improvement, with persistent and unbearable suffering to a (very) high degree in nine cases. Twelve patients were judged to lack the competence to make decisions. GPs were unaware of their patient's end-of-life wishes in nine cases, but always discussed the practice with other caregivers and/or the patient's relatives. All but one patient received opioids to hasten death. All GPs believed that end-of-life quality had been "improved considerably".</p> <p>Conclusions</p> <p>The practice of using life-ending drugs without explicit patient request in general practice in Belgium mainly involves non-competent patients experiencing persistent and unbearable suffering whose end-of-life wishes can no longer be ascertained. GPs do not act as isolated decision-makers and they believe they act in the best interests of the patient. Advance care planning could help to inform GPs about patients' wishes prior to their loss of competence.</p

Biochemical measures and frailty in people with intellectual disabilities

Introduction: People with intellectual disabilities (ID) are earlier frail than people in the general population. Although this may be explained by lifelong unfavourable social, psychological and clinical causes, underlying physiological pathways might be considered too. Biological measures can help identify pathophysiological pathways. Therefore, we examined the association between frailty and a range of serum markers on inflammation, anaemia, the metabolic system, micronutrients and renal functioning. Methods: Participants (n = 757) with borderline to severe ID (50+) were recruited from three Dutch ID care and support services. Results: Frailty was measured with a frailty index, a measure based on the accumulation of deficits. Linear regression analyses were performed to identify associations between frailty and biochemical measures independent of age, gender, level of ID and the presence of Down syndrome. Frailty appears associated with inflammation (IL-6 and CRP), anaemia, metabolic markers (glucose, cholesterol and albumin) and renal functioning (cystatin-C and creatinine). Discussion: These results are in line with results observed in the general population. Future research needs to investigate the causal relation between biochemical measures and frailty, with a special focus on inflammation and nutrition. Furthermore, the possibility to screen for frailty using biochemical measures needs to be used

Implementation of a group-based physical activity programme for ageing adults with ID: A process evaluation

Rationale, aim and objectives This paper describes the results of the process evaluation of a physical activity programme for people with intellectual disabilities (ID), including information about the concepts 'fidelity', 'dose delivered', 'satisfaction' and 'context'. Methods Qualitative and quantitative methods among participants and programme leaders were used. Results The programme was well accepted, feasible and applicable to ageing people with ID. It was successfully implemented in terms of fidelity and dose delivered, although differences between day-activity centres were observed. Conclusions The hampering factors that are revealed in this study and the facilitating activities that were part of the implementation plan may be used by care provider services for (ageing) people with ID and other groups of people with cognitive and/or physical deficits, such as frail elderly people or people with dementia when developing and or preparing implementation of health promotion programmes

Kwetsbaarheid bij ouderen met een verstandelijke beperking: operationalisering, risico en opsporing

Ondanks een toename in levensverwachting, is er in de oudere populatie met verstandelijke beperkingen nogal eens sprake van multipele gezondheidsproblemen en vroegtijdige functionele achteruitgang. Wij maakten gebruik van de data van de studie Gezond Ouder met een verstandelijke beperking (GOUD), om in deze populatie de kwetsbaarheid in kaart te brengen, geoperationaliseerd als een speciaal ontwikkelde kwetsbaarheidsindex van 50 items. Omdat nog niet eerder een kwetsbaarheidsindex was toegepast in een vroeg-gehandicapte populatie, moest vastgesteld worden of deze even voorspellend is voor achteruitgang van gezondheid en zelfstandigheid als in de algemene oudere populatie. In dit artikel geven wij een samenvatting van de opzet en resultaten. In een bijna-representatieve studiepopulatie van 982 50-plus cliënten van de verstandelijk gehandicaptenzorg bestudeerden wij cross-sectioneel de verdeling van kwetsbaarheid, en gedurende een follow-up van 3 jaar de predictieve validiteit. De resultaten tonen dat deze populatie gemiddeld eerder en ernstiger kwetsbaar is dan de algemene 50-plus populatie. Een hogere mate van kwetsbaarheid is voorspellend voor achteruitgang van (instrumentele) ADL en mobiliteit, toename van het medicijngebruik, hogere zorgbehoefte, en hogere sterfte, maar niet voor toename in ziekenhuisopnames. In een hypothetisch model van potentiële oorzaken van kwetsbaarheid maken wij duidelijk, waarop preventie en interventie zich moeten richten, om te komen tot meer gezonde, zelfstandige en kwalitatief bevredigende levensjaren voor deze groep

Developing Core Sets for Persons With Traumatic Brain Injury Based on the International Classification of Functioning, Disability, and Health

The authors outline the process for developing the International Classification of Functioning, Disability, and Health (ICF) Core Sets for traumatic brain injury (TBI). ICF Core Sets are selections of categories of the ICF that identify relevant categories of patients affected by specific diseases. Comprehensive and brief ICF Core Sets for TBI should become useful for clinical practice and for research. The final definition of the ICF Core Sets for TBI will be determined at an ICF Core Sets Consensus Conference, which will integrate evidence from preliminary studies. The development of ICF Core Sets is an inclusive and open process and rehabilitation professionals are invited to participate

Change in what matters to palliative patients: Eliciting information about adaptation with SEIQoL-DW

This study was carried out to investigate the usefulness of the SEIQoL-DW to elicit information about response shifts in palliative patients. The instrument measures individual quality of life and allows respondents to choose, rate and weight important areas of life (cues). We explored patients' reconceptualizations (ie, change in cues) and their value change (ie, change of cues weights). Results of 21 patients showed what mattered to these patients and how they had adjusted to deteriorating health. There is a risk that repeated measurements do not provide all the information that is potentially present and relevant to explore response shifts. But clear instructions to interviewers, such as careful listening, probing self-evident cues such as health and family, and accurate recording of cues on the forms may overcome this risk. Future research is recommended to explore the possibilities of regular assessments to facilitate better adjustment of patients