OBJECTIVES: End-of-life hospitalisations may not be associated with improved quality of life. Studies indicate differences in end-of-life care for cancer and non-cancer patients; however, data on hospital utilisation are sparse. This study aimed to compare end-of-life hospitalisation and place of death among patients dying from cancer, heart failure or chronic obstructive pulmonary disease (COPD).
DESIGN: A nationwide register-based cohort study.
SETTING: Data on all in-hospital admissions obtained from nationwide Danish medical registries.
PARTICIPANTS: All decedents dying from cancer, heart failure or COPD disease in Denmark between 2006 and 2015.
OUTCOME MEASURES: Data on all in-hospital admissions within 6 months and 30 days before death as well as place of death. Comparisons were made according to cause of death while adjusting for age, sex, comorbidity, partner status and residential region.
RESULTS: Among 154 235 decedents, the median total bed days in hospital within 6 months before death was 19 days for cancer patients, 10 days for patients with heart failure and 11 days for patients with COPD. Within 30 days before death, this was 9 days for cancer patients, and 6 days for patients with heart failure and COPD. Compared with cancer patients, the adjusted relative bed day use was 0.65 (95% CI, 0.63 to 0.68) for heart failure patients and 0.68 (95% CI, 0.66 to 0.69) for patients with COPD within 6 months before death. Correspondingly, this was 0.65 (95% CI, 0.63 to 0.68) and 0.70 (95% CI, 0.68 to 0.71) within 30 days before death.Patients had almost the same risk of dying in hospital independently of death cause (46.2% to 56.0%).
CONCLUSION: Patients with cancer, heart failure and COPD all spent considerable part of their end of life in hospital. Hospital use was highest among cancer patients; however, absolute differences were small.
CONTEXT: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL).
OBJECTIVES: This study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs.
METHODS: In this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006-2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multi-stage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness.
RESULTS: 110/114 parents responded to open-ended items; 63% (n=69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8-18.1) prior to death. 71% (n=78/110) had palliative care involvement and 65% (n=69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond 'readiness' for their child's death. Three domains emerged that contributed to parents' lack of preparedness: (1) chronic illness experiences; (2) pretense of preparedness; and (3) circumstances and emotions surrounding their child's death.
CONCLUSIONS: Most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond 'readiness.' More research is needed to identify supportive elements among parents facing their child's EOL.
Objective: Seriously ill adults with multiple chronic conditions (MCC) who receive palliative care may benefit from improved symptom burden, health care utilization and cost, caregiver stress, and quality of life. To guide research involving serious illness and MCC, palliative care can be integrated into a conceptual model to develop future research studies to improve care strategies and outcomes in this population.
Methods: The adapted conceptual model was developed based on a thorough review of the literature, in which current evidence and conceptual models related to serious illness, MCC, and palliative care were appraised. Factors contributing to patients’ needs, services received, and service-related variables were identified. Relevant patient outcomes and evidence gaps are also highlighted.
Results: Fifty-eight articles were synthesized to inform the development of an adapted conceptual model including serious illness, MCC, and palliative care. Concepts were organized into 4 main conceptual groups, including Factors Affecting Needs (sociodemographic and social determinants of health), Factors Affecting Services Received (health system; research, evidence base, dissemination, and health policy; community resources), Service-Related Variables (patient visits, service mix, quality of care, patient information, experience), and Outcomes (symptom burden, quality of life, function, advance care planning, goal-concordant care, utilization, cost, death, site of death, satisfaction).
Discussion: The adapted conceptual model integrates palliative care with serious illness and multiple chronic conditions. The model is intended to guide the development of research studies involving seriously ill adults with MCC and aid researchers in addressing relevant evidence gaps.
Background: Palliative care has been widely implemented in clinical practice for patients with cancer but is not routinely provided to people with chronic obstructive pulmonary disease.
Aim: The study aims were to compare palliative care services, medications, life-sustaining interventions, place of death, symptom burden and health-related quality of life among chronic obstructive pulmonary disease and lung cancer populations.
Design: Systematic review with meta-analysis (PROSPERO: CRD42019139425).
Data sources: MEDLINE, EMBASE, PubMed, CINAHL and PsycINFO were searched for studies comparing palliative care, symptom burden or health-related quality of life among chronic obstructive pulmonary disease, lung cancer or populations with both conditions. Quality scores were assigned using the QualSyst tool.
Results: Nineteen studies were included. There was significant heterogeneity in study design and sample size. A random effects meta-analysis ( n = 3–7) determined that people with lung cancer had higher odds of receiving hospital (odds ratio: 9.95, 95% confidence interval: 6.37–15.55, p < 0.001) or home-based palliative care (8.79, 6.76–11.43, p < 0.001), opioids (4.76, 1.87–12.11, p = 0.001), sedatives (2.03, 1.78–2.32, p < 0.001) and dying at home (1.47, 1.14–1.89, p = 0.003) compared to people with chronic obstructive pulmonary disease. People with lung cancer had lower odds of receiving invasive ventilation (0.26, 0.22–0.32, p < 0.001), non-invasive ventilation (0.63, 0.44–0.89, p = 0.009), cardiopulmonary resuscitation (0.29, 0.18–0.47, p < 0.001) or dying at a nursing home/long-term care facility (0.32, 0.16–0.64, p < 0.001) than people with chronic obstructive pulmonary disease. Symptom burden and health-related quality of life were relatively similar between the two populations.
Conclusion: People with chronic obstructive pulmonary disease receive less palliative measures at the end of life compared to people with lung cancer, despite a relatively similar symptom profile.
Background: Chronic obstructive pulmonary disease (COPD) is an incurable, chronic condition that leads to significant morbidity and mortality, with most patients dying in hospital. While diagnostic tests are important for actively managing patients during hospital admissions, the balance between benefit and harm should always be considered. This is particularly important when patients reach the end-of-life, when the focus is to reduce burdensome interventions. This study aimed to examine the use of diagnostic testing in a cohort of people with COPD who died in hospital.
Methods: Retrospective medical record audits were completed at two Australian hospitals (Royal Melbourne Hospital and Northeast Health Wangaratta), with all patients who died from COPD over twelve years between 1/1/2004 and 31/12/2015 included.
Results: Three hundred and forty-three patients were included, with a median of 11 diagnostic testing episodes per patient. Undergoing higher numbers of diagnostic tests was associated with younger age, ICU admission and non-invasive ventilation use. Reduced testing was associated with recent hospital admission for COPD, domiciliary oxygen use and a prior admission with documentation limiting medical treatment. Most patients underwent diagnostic tests in the last two days of life, and 12% of patients had ongoing diagnostic tests performed after a documented decision was made to change the goal of care to provide comfort care only.
Conclusion: There were missed opportunities to reduce the burden of diagnostic tests and focus on comfort at the end of life. Increased physician education regarding communication and en-of-life care, including recognising active dying may address these issues.
Background: It is important to understand the total burden of COPD and thereby be able to identify patients who need more intensive palliative care to avoid deteriorated quality of life. The aim of this study was to describe the psychosocial and demographic characteristics of a population with advanced COPD in a stable phase of the disease.
Methods: This study was cross-sectional based on a prospective observational cohort. The following questionnaires were administered: Chronic Respiratory Disease Questionnaire (CRQ), The COPD Assessment Test (CAT), The Hospital and Anxiety and Depression Scale (HADS), The Medical Research Council dyspnoea scale (MRC), and self-rate general health.
Results: We included 242 patients with advanced COPD from a Danish pulmonary outpatient clinic. Their mean FEV1 was 38% (±12.7) and 19% were treated with long term oxygen. The mean CRQ domain score was CRQ-dyspnea 4.21 (±1.4), CRQ-Mastery 4.88 (±1.3), CRQ-Emotional 4.81 (±1.2), CRQ-Fatigue 3.93 (±1.3). The mean CAT-score was 18.4 (± 6.7), and 44% had a CAT score > 20. The mean score on the subscale for anxiety (HADS-A) and depression (HADS-D) was 5.07 (±3.9) and 5.77 (±3.9), respectively. Thirty percent self-rated their health as bad or very bad and 19.8% were current smokers.
Conclusions: This study describes the characteristics of a population with advanced COPD in a stable phase of their disease. Our results illustrate how the population although treated in an outpatient structure already focusing on palliative needs, still live with unmet palliative needs and impaired quality of life.
Objectives: Hospice use reduces costly aggressive end-of-life (EOL) care (eg, repeated hospitalizations, intensive care unit care, and emergency department visits). Nevertheless, associations between hospice stays and EOL expenditures in prior research have been inconsistent. We examined the differential associations between hospice stay duration and EOL expenditures among newly diagnosed patients with cancer, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and dementia.
Methods: In the Surveillance, Epidemiology, and End Results–Medicare data, we identified 240 246 decedents diagnosed with the aforementioned conditions during 2001 to 2013. We used zero-inflated negative binomial regression models to examine the differential associations between hospice length of services and EOL expenditures incurred during the last 90, 180, and 360 days of life.
Results: For the last 360 days of expenditures, hospice stays beyond 30 days were positively associated with expenditures for decedents with COPD, CHF, and dementia but were negatively associated for cancer decedents (all P<.001) after adjusting for demographic and medical covariates. In contrast, for the last 90 days of expenditures, hospice stay duration and expenditures were consistently negatively associated for each of the 4 patient disease groups.
Conclusions: Longer hospice stays were associated with lower 360-day expenditures for cancer patients but higher expenditures for other patients. We recommend that Medicare hospice payment reforms take distinct disease trajectories into account. The relationship between expenditures and hospice stay length also depended on the measurement duration, such that measuring expenditures for the last 6 months of life or less overstates the cost-saving benefit of lengthy hospice stays.
Background: Post-acute rehabiitation is recommended in the treatment of chronic obstructive pulmonary disease (COPD). It enhances the sense of control by education, which should focus on patient information needs. However, it is unknown whether a geriatric rehabilitation programme for older patients with advanced COPD and severely impaired health status (the GR-COPD programme) does fit these patient information needs.
Objectives: The study aimed to identify the information needs of patients who were eligible for the GR-COPD programme, and investigated if health-related knowledge improved during rehabilitation.
Methods: All patients indicated for the GR-COPD programme were eligible for this study. The information needs were measured with the Lung Information Needs Questionnaire (LINQ).
Findings: The 158 patients (mean age 70.8 years; FEV1 %predicted: 35.5) showed relatively high baseline information needs (mean LINQ overall score: 8.6 [SD 3.1]), with the greatest need in the domains ‘diet’ and ‘self-management’. After follow-up, the mean LINQ overall score significantly improved in patients who completed the GR-COPD programme (p=0.001).
Conclusion: Patients' knowledge showed a statistically significant improvement in some areas during the GR-COPD programme.
Introduction : Les patients présentant une ischémie critique chronique des membres inférieurs ne sont pas toujours accessibles à un traitement curatif vasculaire. Les seules possibilités deviennent l’amputation, ou un traitement conservateur, limités pour soulager la douleur, et mal tolérés/acceptés. Dans cette approche palliative de l’ICC, l’objectif du travail est d’évaluer l’impact d’une neurolyse alcoolique du nerf sciatique, sur la qualité de vie (antalgie, retour à domicile), et d’évaluer le processus aboutissant à cette décision.
Méthode : Étude descriptive rétrospective sur dossiers médicaux de 13 patients en lits identifiés de soins palliatifs (LISP), entre 2017 et 2019.
Résultats : Les motivations pour la neurolyse étaient l’analgésie pérenne, le retour à domicile, le refus de l’amputation, et le caractère peu fonctionnel du membre atteint. L’analgésie était retrouvée chez tous les patients : après le geste, à J3, et à la sortie. Huit patients regagnaient le domicile (médiane de survie : 41jours). Deux étaient ré-hospitalisés. Cinq patients décédaient en LISP (médiane de 7jours postneurolyse). Un geste complémentaire était parfois nécessaire devant l’apparition d’un nouveau territoire douloureux. Des complications, attendues, étaient retrouvées. La recherche de collégialité existait pour tous les patients. La réflexion pluridisciplinaire, dans une démarche formalisée, était décrite pour la majorité.
Discussion : Cette étude suggère un bénéfice de la neurolyse, à contraster avec les limites évoquées : méthodologiques, et celles inhérentes à la technique. Elle s’envisage après évaluation et délibération pluridisciplinaire collégiale. Des travaux ultérieurs devraient préciser ces conclusions.
Context: Uremic pruritus (UP) affects up to half of all patients with kidney disease and has been independently associated with poor patient outcomes. UP is a challenging symptom for clinicians to manage as there are no validated guidelines for its treatment.
Objectives: The study aimed to develop and validate an algorithm and patient information toolkit for the treatment of UP in patients with kidney disease.
Methods: The study involved a literature search and development of an initial draft algorithm, followed by content and face validation of this algorithm. Validation entailed three rounds of interviews with six nephrology clinicians per round. Participants assessed the relevance of each component of the algorithm and then rated a series of statements on a scale of 1-5 to assess face validity of the algorithm. After each round, the content validity index (CVI) of each algorithm component was calculated, and the algorithm was revised by the study team in response to findings. This process was followed by a second study that developed and validated a patient information pamphlet and video.
Results: Algorithm validation participants were affiliated with three institutions and included seven physicians, four registered nurses, three nurse practitioners, three pharmacists, and a dietician. The average CVI of the algorithm components across all three rounds was 0.89, with 0.80 commonly cited as the lower acceptable limit for content validation. More than 78% of participants rated each face validity statement as “Agree” or “Strongly Agree”. For the patient information tools, five clinicians and 15 patients were included in validation. The average CVI was 1.00 for both tools, and the average face validity was 92%.
Conclusion: A treatment algorithm and patient information toolkit for managing UP in patients with kidney disease were developed and validated through expert review. Further research will be conducted on implementation of the treatment algorithm and evaluating patient-reported outcomes.
Background: Advance directives towards end of life decisions are seldom used among Arabs.
Aims: This study aimed at investigating advance care preferences among a sample of Arab patients.
Method: This cross-sectional study was undertaken over the period March 2012-March 2013 on a sample of 300 patients with chronic illness in King Fahad National Guard Hospital, Riyadh, a major tertiary care hospital in Saudi Arabia.
Results: Mean age of patients in the study was 48.7 years (standard deviation 16.4). There were 104 patients on haemodialysis, 73 with advanced malignancy, 81 with chronic liver disease and 35 with chronic respiratory disease. More than 80% of the respondents felt that the physician should make the decision about cardiopulmonary resuscitation. Over 60% wished to remain at home when their condition deteriorated to impending death. There were no significant correlations between the patients' end of life decision preferences and religiosity, quality of life, disease duration, or other demographic characteristics.
Conclusion: Despite a significant lack of knowledge among our participants regarding resuscitation, a majority of patients with chronic illness were willing to discuss the options and were capable of making advance directive plans regarding their health status.
The mortality rate from chronic liver disease in the UK is rising rapidly, and patients with advanced disease have a symptom burden comparable to or higher than that experienced in other life-limiting illnesses. While evidence is limited, there is growing recognition that care of patients with advanced disease needs to improve. Many factors limit widespread provision of good palliative care to these patients, including the unpredictable trajectory of chronic liver disease, the misconception that palliative care and end-of-life care are synonymous, lack of confidence in prescribing and lack of time and resources. Healthcare professionals managing these patients need to develop the skills to ensure effective delivery of core palliative care, with referral to specialist palliative care services reserved for those with complex needs. Core palliative care is best delivered by the hepatology team in parallel with active disease management. This includes ensuring that discussions about disease trajectory and advance care planning occur alongside active management of disease complications. Liver disease is strongly associated with significant social, psychological and financial hardships for patients and their carers; strategies that involve the wider multidisciplinary team at an early stage in the disease trajectory help ensure proactive management of such issues. This review summarises the evidence supporting palliative care for patients with advanced chronic liver disease, presents examples of current best practice and provides pragmatic suggestions for how palliative and disease-modifying care can be run in parallel, such that patients do not miss opportunities for interventions that improve their quality of life.
Half of adults with chronic obstructive pulmonary disease (COPD) in the US will be 75 years or older by 2030. Patients with COPD often have years of debilitating symptoms that accelerate their loss of independence and well-being. COPD is progressive and incurable; many patients are frail and socially isolated and struggle with long lists of medications. Their care is often chaotic and fragmented, with frequent emergency department visits and hospitalizations. Given the limited numbers of geriatricians and palliative care specialists, clinicians who routinely care for patients with COPD should proactively integrate geriatrics and palliative care principles into their daily practice.
BACKGROUND: Developing recommendations for how we deliver healthcare is often left to leading experts in a field. Findings from the Integrated Palliative Care in cancer and chronic conditions (InSup-C) study, which aimed to identify best practice in integrated palliative care in cancer, chronic obstructive pulmonary disease (COPD) and heart failure, led to recommendations developed through an expert consultation process. We also wanted to develop these recommendations further with participants who were largely clinicians and members of the public.
METHODS: Results from the InSup-C study were disseminated through a three-week massive open online course (MOOC) which ran in 2016, 2017 and 2019. The first course helped develop the final recommendations, which were ranked by MOOC participants in the subsequent courses. MOOC participants were predominantly clinicians, but also academics and members of the public. They rated how important each recommendation was on a 9 point scale (9 most important). Descriptive statistics were used to analyse the ratings. The results were compared to findings from the consultation.
RESULTS: Five hundred fifteen completed the last part of the course where the recommendations were ranked, of which 195 (38%) completed the ratings. The top recommendations related to: need to expand palliative care to non-malignant conditions; palliative care needs to include different dimensions of care including physical, psychological and spiritual; policies and regulations assessments should be made regularly; palliative care integration should be mandatory; and there should be greater availability of medicines. These differed compared to the top ranked recommendations by the consultation panel in relation to the importance of leadership and policy making. This may indicate that clinicians are more focused on daily care rather than the (inter) national agenda.
CONCLUSIONS: Whilst both sets of recommendations are important, our study shows that we need to include the views of clinicians and the public rather than rely upon leading expert opinion alone. To keep recommendations fresh we need both the input of clinicians, the public and experts. When disseminating findings, MOOCs offer a useful way to gain greater reach with clinicians and the public, and importantly could be a vehicle to validate recommendations made by leading expert panels.
Objectives: An increasing number of children are living with complex chronic diseases (CCDs) due to medical advances. Despite a need for code status discussions (CSDs), there is great variability in the frequency and documentation of such conversations. The objective was to identify gaps in the documentation of CSDs within the electronic health record (EHR), focusing on patients with CCDs.
Methods: This was a retrospective review of all patients admitted from the emergency department of a tertiary care children's hospital in 2016. An EHR query using the Apache Hadoop cluster and manual review identified documentation of CSDs, including (1) code status orders, (2) advance directives, and (3) CSDs in provider notes. Patient complexity was stratified using the Pediatric Medical Complexity Algorithm 3.0. Comparative analysis was performed using chi-square, Kruskal–Wallis tests and multivariable logistic regression.
Results: There were 12,648 unique patients of whom 4157 (32.9%) had CCD. Only 209 (1.7%) patients had a code status documented, of whom 200 (95.7%) had CCD. Of 528 (4.2%) patients =18 years of age, 428 (81.1%) had CCD and only 65 (12.3%) had CSDs. Palliative care consultation increased odds of CSDs (OR: 21.4, 95% CI: 13.8–33.2, p < 0.0001), whereas African American race decreased odds of CSDs (OR: 0.42, 95% CI: 0.27–0.64, p < 0.0001).
Conclusions: Among admitted pediatric patients, most do not have documentation of CSDs, including those with CCD and patients =18 years of age. Improvements in both frequency and consistency of CSD documentation are needed to inform the family-centered care of patients living with CCDs.
Background: Chronic lung disease is a common cause of mortality, yet little is known about where individuals with chronic lung disease die.
Research Question: What are the trends and factors associated with place of death among individuals with chronic lung disease?
Study Design and Methods: We conducted a cross-sectional analysis of natural deaths using the Centers for Disease Control and Prevention Wide-ranging OnLine Data for Epidemiologic Research from 2003 to 2017 for which chronic obstructive pulmonary disease (COPD), interstitial lung disease (ILD), or cystic fibrosis (CF) was the underlying cause. Place of death was categorized as hospital, home, nursing facility, hospice facility, and other.
Results: From 2003 to 2017, more than 2.2. million deaths were primarily attributed to chronic lung disease (51.6% female, 92.4% white). Most were attributed to COPD (88.9%), followed by ILD (10.8.%), and CF (0.3%). Hospital and nursing facility deaths declined from 44.4% (n= 59,470) and 22.6% (n= 30,285) to 28.3% (n= 49,6555) and 19.7% (n= 34,495) while home and hospice facility deaths increased from 23.3% (n=31,296) and 0.1% (n=192) to 34.7% (n=60851) and 9.0% (n=15,861) respectively. Male sex, being married, and having some college education were associated with increased odds of home death while non-white race and Hispanic ethnicity were associated with increased odds of hospital death. Compared to decedents with COPD, individuals with ILD and CF had increased odds of hospital death and reduced odds of home, nursing facility or hospice facility death.
Interpretation: Home deaths are increasing among decedents from chronic lung disease increasing the need for quality end-of-life care in this setting. Further research should explore the end-of-life needs and preferences of these patients and their caregivers with particular attention paid to patients with ILD and CF who continue to have high rates of hospital death.
Objective: To develop a proposal for a 2-year mortality prognostic approach for patients with advanced chronic conditions based on the palliative care need (PCN) items of the
NECesidades PALiativas (NECPAL) CCOMS-ICO V.3.1 2017 tool.
Methods: A phase 1 study using three components based on the NECPAL items: (1) a rapid review of systematic reviews (SRs) on prognostic factors of mortality in patients with advanced chronic diseases and PCNs; (2) a clinician and statistician experts' consensus based on the Delphi technique on the selection of mortality prognostic factors; and (3) a panel meeting to discuss the findings of components (1) and (2).
Results: Twenty SRs were included in a rapid review, and 50% were considered of moderate quality. Despite methodological issues, nutritional and functional decline, severe and refractory dyspnoea, multimorbidity, use of resources and specific disease indicators were found to be potentially prognostic variables for mortality across four clinical groups and end-of-life (EoL) trajectories: cancer, dementia and neurologic diseases, chronic organ failure and frailty. Experts’ consensus added ‘needs’ identified by health professionals. However, clinicians were less able to discriminate which NECPAL items were more reliable for a ‘general’ model. A retrospective cohort study was designed to evaluate this proposal in phase 2.
Conclusions: We identified several parameters with prognostic value and linked them to the tool’s utility to timely identify PCNs of patients with advanced chronic conditions in all settings of care. Initial results show this is a clinical and feasible tool, that will help with clinical pragmatic decision-making and to define services.
Background: End-stage chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF) and chronic renal failure (CRF) are characterized by a high burden of daily symptoms that, irrespective of the primary organ failure, are widely shared.
Aims: To evaluate whether and to which extent symptom-based clusters of patients with end-stage COPD, CHF and CRF associate with patients’ health status, mobility, care dependency and life-sustaining treatment preferences.
Methods: 255 outpatients with a diagnosis of advanced COPD (n = 95), advanced CHF (n = 80) or CRF requiring dialysis (n = 80) were visited in their home environment and underwent a multidimensional assessment: clinical characteristics, symptom burden using Visual Analog Scale (VAS), health status questionnaires, timed “Up and Go” test, Care Dependency Scale and willingness to undergo mechanical ventilation or cardiopulmonary resuscitation. Three clusters were obtained applying K-means cluster analysis on symptoms’ severity assessed via VAS. Cluster characteristics were compared using non-parametric tests.
Results: Cluster 1 patients, with the least symptom burden, had a better quality of life, lower care dependency and were more willing to accept life-sustaining treatments than others. Cluster 2, with a high presence and severity of dyspnea, fatigue, cough, muscle weakness and mood problems, and Cluster 3, with the highest occurrence and severity of symptoms, reported similar care dependency and life-sustaining treatment preferences, while Cluster 3 reported the worst physical health status.
Discussion: Symptom-based clusters identify patients with different health needs and might help to develop palliative care programs.
Conclusion: Clustering by symptoms identifies patients with different health status, care dependency and life-sustaining treatment preferences.
Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy.
Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention.
Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group.
Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.
Background: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child’s chronic life-threatening illness, there is no such study within the Asian context.
Methods: To bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018.
Results: Data analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants’ lived experience of their child’s chronic life-threatening illness and death, starting from the diagnosis of their child’s chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child’s death and the losses which accompanied the death (Theme 3) and participants’ experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or ‘rituals’ that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7).
Conclusion: These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.