BACKGROUND: Children with serious illness suffer from symptoms at the end of life that often fail to be relieved. An overview is required of healthcare interventions improving and decreasing quality of life (QOL) for children with serious illness at the end of life.
METHODS: A systematic review was performed in five databases, January 2000 to July 2018 without language limit. Reviewers selected quantitative studies with a healthcare intervention, for example, medication or treatment, and QOL outcomes or QOL-related measures, for example, symptoms, for children aged 1-17 years with serious illness. One author assessed outcomes with the QualSyst and GRADE (Grades of Recommendation, Assessment, Development, and Evaluation) Framework; two authors checked a 25% sample. QOL improvement or reduction was categorized.
RESULTS: Thirty-six studies met the eligibility criteria studying 20 unique interventions. Designs included 1 randomized controlled trial, 1 cross-sectional study, and 34 cohort studies. Patient-reported symptom monitoring increased QOL significantly in cancer patients in a randomized controlled trial. Dexmedetomidine, methadone, ventilation, pleurodesis, and palliative care were significantly associated with improved QOL, and chemotherapy, stem cell transplant, and hospitalization with reduced QOL, in cohort studies.
CONCLUSIONS: Use of patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication may improve QOL. Curative therapy may reduce QOL.
IMPACT: QOL for children at the end of life may be improved with patient-controlled symptom feedback, multidisciplinary palliative care teams with full-time practical support, inhalation therapy, and off-label sedative medication.QOL for children at the end of life may be reduced with therapy with a curative intent, such as curative chemotherapy or stem cell transplant.A comprehensive overview of current evidence to elevate currently often-failing QOL management for children at the end of life.New paradigm-level indicators for appropriate and inappropriate QOL management in children at the end of life.New hypotheses for future research, guided by the current knowledge within the field.Various healthcare interventions (as described above) could or might be employed as tools to provide relief in QOL management for children with serious illness, such as cancer, at the end of life, and therefore could be discussed in pediatrician end-of-life training to limit the often failed QOL management in this population, cave the one-size-fits-all approach for individual cases.Multidisciplinary team efforts and 24/7 presence, especially practical support for parents, might characterize effective palliative care team interventions for children with serious illness at the end of life, suggesting a co-regulating link between well-being of the child partly to that of the parentsHypothesis-oriented research is needed, especially for children with nonmalignant disorders, such as genetic or neurological disorders at the end of life, as well as QOL outcomes for intervention research and psychosocial or spiritual outcomes.
OBJECTIVE: Communication and patient-centred care are important determinants for timely initiation of palliative care. Therefore, we aimed to understand and explain the behaviour "starting a conversation about palliative care with a professional carer" from the perspective of people with incurable cancer.
METHODS: A qualitative study using semi-structured face-to-face interviews with 25 people with incurable cancer: 13 not (yet) receiving palliative care and 12 receiving palliative care; 4 started the conversation themselves. Determinants related to the defined behaviour were matched with concepts in existing behavioural theories.
RESULTS: Both positive and negative stances towards starting a conversation about palliative care with a professional carer were found. Influencing behavioural factors were identified, such as knowledge (e.g. about palliative care), attitude (e.g. association of palliative care with quality of life) and social influence (e.g. relationship with the professional carer). We modelled the determinants into a behavioural model.
CONCLUSION: The behavioural model developed helps to explain why people with incurable cancer do or do not start a conversation about palliative care with their professional carer. By targeting the modifiable determinants of the model, promising interventions can be developed to help patients taken the initiative in communication about palliative care with a professional carer.
BACKGROUND: COPD patients often use many medical resources, such as hospital admissions and medical imaging, inappropriately close to death. Palliative home care (PHC) could beneficially affect his.
AIM: To study the effect of use and timing of PHC on medical resource use and costs in the last 30 }days before death (DBD) for COPD.
METHODS: Retrospective study of all Belgian decedents in 2010-2015 with COPD and a primary cause of death being COPD or cardiovascular diseases. Odds ratios (OR) for medical resources were calculated between using and four PHC timing categories (>360; 360-181; 180-91; 90-31 DBD) versus not using. Confounders were socio-demographic, care intensity and disease severity variables.
RESULTS: Of the 58 527 decedents with COPD, 644 patients (1.1%) received PHC earlier than 30 DBD. Using PHC (versus not using) decreased the OR for hospitalisation (0.35), intensive care unit admission (0.16), specialist contacts (0.58), invasive ventilation (IV) (0.13), medical imaging including chest radiograph (0.34), sedatives (0.48) and hospital death (0.14). It increased the OR for home care (3.27), general practitioner contact (4.65), palliative care unit admission (2.61), non-IV (2.65), gastric tube (2.15), oxygen (2.22) and opioids (4.04) (p<0.001). Mean total healthcare costs were €1569 lower for using PHC. All PHC timing categories showed a benefit in medical resource use and costs. However, we observed the largest benefit in the category PHC 90-31 DBD.
CONCLUSION: Health policy and services should focus on increasing PHC access, while research should further explore early PHC initiation for COPD. Funding SBO IWT nr. 140009.
BACKGROUND: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.
AIM: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient.
DESIGN/PARTICIPANTS: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support.
RESULTS: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support.
CONCLUSION: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.
Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined.
Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009).
Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories.
Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning.
Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.
CONTEXT: Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice.
OBJECTIVES: This study aimed to identify barriers to and facilitators of the end-of-life decision-making process as perceived by neonatologists and nurses.
METHODS: We conducted semi-structured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous end-of-life decision-making processes. Two researchers independently analysed the data, using thematic content analysis to extract and summarize barriers and facilitators.
RESULTS: Barriers and facilitators were found at three distinct levels: the case-specific context (e.g. uncertainty of the diagnosis and specific characteristics of the child, the parents and the healthcare providers which make decision-making more difficult), the decision-making process (e.g. multidisciplinary consultations and advance care planning (ACP) which make decision-making easier), and the overarching structure (e.g. lack of privacy and complex legislation making decision-making more challenging).
CONCLUSIONS: Barriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex end-of-life decision making process. Recommendations include establishing regular multidisciplinary meetings to include all healthcare providers and reduce unnecessary uncertainty, routinely implementing ACP in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents and reviewing the complex legal framework of perinatal end-of-life decision-making.
BACKGROUND: ALS is an incurable neurodegenerative disorder, with the recommendation that symptom management and palliative care start immediately or soon after diagnosis. However, little is known about healthcare utilization at the end of life in this patient group.
AIM: To describe healthcare utilization at the end of life in patients who died from ALS.
DESIGN: We performed a retrospective cohort study using population-level administrative databases. The description of healthcare utilization was based on (1) validated quality indicators for end-of-life care, and (2) the European Federation of Neurological Societies guidelines on the clinical management of ALS.
SETTING: We included all people who died from ALS in Belgium between 2010 and 2015 (using ICD-10 code G12.2).
RESULTS: 1636 people died from ALS in Belgium between 2010 and 2015. The mean age at death was 71 years (SD11.3), and 56% were men. Specialized palliative care was used by 44% at some point in the last two years of life. In the last month of life, 13% received tube feeding, 48% received diagnostic testing, 41% were admitted to a hospital, and 25% were admitted to an emergency department. Medications were used mainly to treat pain (43%), insomnia and fatigue (33%) and thrombosis (32%); 39% used riluzole. Non-invasive ventilation was used by 18%. 39% died at home.
CONCLUSION: Administrative data provide a valuable source to describe healthcare utilization in small populations such as ALS, but more clinical evidence is needed on the advantages and disadvantages initiating or terminating treatments at the end of life.
BACKGROUND: Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have proven detrimental effects on the quality of life of children in an end-of-life context. In order to identify potential quality indicators to eventually improve care, a systematic review of available evidence is needed. The aim of the current systematic review will be to make an overview of the influence of health interventions on associated outcomes related to quality of life at the end of life in seriously ill children.
METHODS: A systematic search will be conducted in MEDLINE, Embase, CENTRAL, CINAHL, and Web of Science. We will include quantitative empirical designs looking into the influence of a health intervention on (proxies of) quality of life at the end of life in seriously ill children. Three independent authors will review titles and abstracts and screen full texts against eligibility criteria. One reviewer will carry out full data extraction and quality assessment, and a 20% random sample will be extracted and assessed by two independent reviewers. We will use the QualSyst Tool for assessment of the quality of the included studies (QualSyst Tool) for quality assessment; overall strength of the body of evidence will be assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. An overview table of health interventions will be discussed through narrative synthesis. Should sufficient homogeneous publications arise, we will perform meta-analyses with a random-effects model. Our protocol adheres to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist for study protocols.
DISCUSSION: As part of a larger project, we will use the results of this review to identify a first set of quality indicators for the care for children at the end of life. Reviewing the current span of evidence and identifying research gaps will uncover future research priorities into the care for children at the end of life.
CONTEXT: The need for increased use and earlier initiation of palliative home care has been advocated by several international organizations.
OBJECTIVES: To investigate time trends in the use and timing of initiating palliative home care support (PHCS).
METHODS: Observational study using routinely collected population-level databases linked with health claims data for the entire population living at home that died from diseases indicative of palliative care needs in Belgium between 2010 and 2015 (n=230,704). Trends and trends by cause of death and age were measured through changes over time in prevalence of use of PHCS. Rates were standardized for age, sex and cause of death distribution in 2010. The median number of days before death when PHCS was initiated was calculated for each year.
RESULTS: Uptake of PHCS increased from 31.7% to 34.9% between 2010 and 2015. Trends were similar in size for all groups, except for people who died from dementia (smallest increase with 1.9 percent-point). The timing of initiating PHCS advanced from 41 days to 46 days before death, with the smallest increase observed among people who died from dementia (+2.5 days). The proportion of people receiving PHCS only in the last week of life changed from 15.3% to 13.9%.
CONCLUSION: This population-level study found a slight trend towards more and earlier initiation of PHCS between 2010 and 2015. However, uptake of PHCS remained below estimated needs in the population and the proportion of people receiving PHCS very late in life remained stable over time.
BACKGROUND: Many countries developed supportive measures for palliative home care, such as financial incentives or multidisciplinary palliative home care teams. For policy makers, it is important to evaluate the use of these national palliative home care supportive measures on a population level.
METHODS AND FINDINGS: Using routinely-collected data on all deaths in Belgium in 2012 (n = 107,847) we measured the use of four statutory supportive measures, specifically intended for patients who have obtained the legal palliative status, and three non-statutory supportive measures. Factors associated with uptake were analysed using multivariable logistic regression. Of all deaths of adult home-dwelling persons in Belgium (n = 87,007), 17.9 percent used at least one statutory supportive measure and 51.5 percent used at least one non-statutory supportive measure. In those who died of an illness indicative of palliative care needs 33.1 percent used at least one statutory supportive measure and 62.2 percent used at least one non-statutory supportive measure. Younger people and persons dying from cancer were more likely to use a statutory policy measure. Older people and persons dying from COPD were most likely to use a non-statutory policy measure. Women, non-single people, and those living in less urbanised areas were most likely to use any supportive measure.
CONCLUSIONS: Statutory supportive measures for palliative home care are underused, even in a subpopulation of persons with potential palliative care needs. Policy makers should stimulate an equitable uptake, and reducing the observed inequalities is an important focus for health care policy.
Objectives: To evaluate the impact of palliative home care support on the quality of care and costs in the last 14 days of life.
Design: Matched cohort study using linked administrative databases.
Setting: All people who died in Belgium in 2012 (n=107 847).
Participants: 8837 people who received palliative home care support in the last 720 to 15 days of life matched 1:1 by propensity score to 8837 people who received usual care.
Intervention: Receiving the allowance for palliative home patients, multidisciplinary palliative home care team visit or palliative nurse or physiotherapist visit at home.
Main outcome measures: Home death, number of family physician contacts, number of primary caregiver contacts, hospital death, hospital admission, intensive care unit (ICU) admission, emergency department (ED) admission, diagnostic testing, blood transfusion and surgery. Total inpatient and outpatient costs. All outcomes were measured in the last 14 days of life.
Results: In the unmatched cohort, 11 149 (13.5%) people received palliative home care support in the last 720 to 15 days of life. After matching, those using palliative home care support had, compared with those who did not, more family physician contacts (mean 3.1 [SD=6.5] vs 0.8 [SD=1.2]), more chance of home death (56.2%vs13.8%; relative risk [RR]=4.08, 95% CI 3.86 to 4.31), lower risk of hospital admission (27.4%vs60.8%; RR=0.45, 95% CI 0.43 to 0.46), ICU admission (18.3%vs40.4%; RR=0.45, 95% CI 0.43 to 0.48) or ED admission (15.2%vs28.1%; RR=0.54, 95% CI 0.51 to 0.57). Mean total costs of care were lower for those using palliative home care support (€3081 [95% CI €3025 to €3136] vs €4698 [95% CI €4610 to €4787]; incremental cost: -€1617 [p<0.001]).
Conclusions: Palliative home care support use positively impacts quality of care and reduces total costs of care at the end of life in Belgium. Policy makers and healthcare practitioners should increasingly focus on communicating the existing options for palliative home care support to patients and their caregivers.
BACKGROUND: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period (> 22 weeks of gestation – 1 year) including both neonates and stillborns, are non-existent. However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap.
METHODS: First, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained.
DISCUSSION: This research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.
BACKGROUND: It is necessary to understand behaviours that contribute to improvement in the quality of end-of-life care; use of behavioural theories allows identification of factors underlying end-of-life care behaviour, but little is known about the extent to which, and in what manner, these theories are used in an end-of-life care research context.
AIM: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined.
DESIGN: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009).
DATA SOURCES: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories.
RESULTS: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies - 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative - for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning.
CONCLUSION: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.
Purpose Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children's distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons' and daughters' distrust in the care that was provided to a dying parent. Methods We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey. Results In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire-9 [RR, 2.3; 95% CI, 1.5 to 3.5]). Conclusion In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.
Objective: We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients.
Methods: Cancer patients consulting a university hospital (N=620) filled out a questionnaire. Their cancer related data were collected through the treating oncologist. This study is performed in Belgium, where “palliative care for all” is a patient’s right embedded in the law and euthanasia is possible under certain conditions.
Results: Around 80% received information about their illness course and treatments. Ten percent received information about palliative care and euthanasia. Most information about palliative care and euthanasia was given when the patient had a life expectancy of less than six months. However, a quarter of those in earlier phases in their illness trajectory, particularly those who experienced high pain, fatigue or nausea requested more information on these topics.
Conclusion: Many patients want more information about palliative care and euthanasia than what is currently provided, also those in an earlier than terminal phase of their disease.
Practice implications: Healthcare professionals should be more responsive, already from diagnosis, to the information needs about palliative care and possible end-of-life decisions. This should be patient-tailored, as some patients want more and some patients want less information.
Background: Over 50% of elderly people die in acute hospital settings, where the quality of end-of-life care is often suboptimum. The authors aimed to assess the effectiveness of the Care Programme for the Last Days of Life (CAREFuL) at improving comfort and quality of care in the dying phase in elderly people.
Methods: they did a cluster randomised controlled trial in acute geriatric wards in ten hospitals in Flemish Region, Belgium, between Oct 1, 2012, and March 31, 2015. Hospitals were randomly assigned to implementation of CAREFuL (CAREFuL group) or to standard care (control group) using a random number generator. Patients and families were masked to interventaion allocation; hospital staff were unmasked. CAREFuL comprised a care guide for the last days of life, training, supportive documentation, and an implementation guide. Primary outcomes were comfort around dying, measured with the End-of-Life in Dementia–Comfort Assessment in Dying (CAD-EOLD), and symptom management, measured with the End-of-Life in Dementia–Symptom Management (SM-EOLD), by nurses and family carers. Analyses were by intention to treat. This trial is registered with ClinicalTrials.gov, number NCT01890239. Findings: 451 (11%) of 4241 beds in ten hospitals were included in the analyses. Five hospitals were randomly assigned to standard health care practice and five to the CAREFuL programme; 118 patients in the control group and 164 in the CAREFuL group were eligible for assessment. Assessments were done for 132 (80%) of 164 patients in the CAREFuL group and 109 (92%) of 118 in the control group by nurses, and 48 (29%) in the CAREFuL group and 23 (19%) in the control group by family carers. Implementation of CAREFuL compared with control significantly improved nurse-assessed comfort (CAD-EOLD baseline-adjusted mean difference 4·30, 95% CI 2·07–6·53; p<0·0001). No significant differences were noted for the CAD-EOLD assessed by family carers (baseline-adjusted mean difference -0·62, 95% CI -6·07 to 4·82; p=0·82) or the SM-EOLD assessed by nurses -0·41, -1·86 to 1·05; p=0·58) or by family carers -0·59, -3·75 to 2·57; p=0·71). Interpretation: Although a continuous monitoring of the programme is warranted, these results suggest that implementation of CAREFuL might improve care during the last days of life for patients in acute geriatric hospital wards. Funding: The Flemish Government Agency for Innovation by Science and Technology and the Belgian Cancer Society “Kom Op Tegen Kanker”.
BACKGROUND: The proportion of people in need of palliative care worldwide is rising, and the majority wish to receive this care at home. Many countries have created policy measures to support palliative care at home. AIM: To list and compare existing policy measures designed to support palliative care at home in addition to available primary care services in Belgium, France and Germany.
METHODS: A cross-country case comparison based on expert consultation, governmental policy documents and relevant scientific literature.
RESULTS: All three countries have policy measures that allow informal caregivers to adapt their working patterns or take leave of absence to provide care without losing employee rights; however, only Belgium offers specific paid palliative care leave. All three countries offer various allowances to people who are dying at home and their caregivers. Cost-reductions for out-of-pocket expenses are available, based on the level of care dependency in Germany and on prognosis in Belgium, but are not provided in France. Mobile home support teams exist in all three countries and are free of charge for patients and caregivers but only in Belgium and Germany are they specialist multidisciplinary palliative home care teams. Belgium and Germany provide respite care for palliative patients. CONCLUSION: European countries with similar contextual characteristics offer comparable policy measures to support palliative care at home in addition to the available primary care services. However, important differences exist in the criteria for access and the extent of what is offered.