Background: The major growth of mobile technologies in the recent years has led to the development of medical-monitoring applications, particularly on smartphones.
Aim: The aim of this study was to review the use of m-health in the monitoring of patients with chronic pathologies in order to consider what could be adapted for palliative care patients at home.
Design: A systematic review of the English and French literature was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria.
Date Sources: The review screened the following databases: PUBMED, SCOPUS, COCHRANE, SCIENCE DIRECT, SUDOC, and EM-Premium, screening studies published between 2008 and 2018. The selection of articles was done by the main investigator. All studies concerning the use of m-Health apps for patients with chronic diseases were included.
Results: From the 337 selected publications, 8 systematic reviews and 14 original studies were included. The main uses of m-Health apps were biological and clinical monitoring (particularly concerning the symptoms) in 75% of the applications, disease self-management in 64% of the applications, and therapeutic patient education in 50% of the applications, with remote monitoring.
Conclusions: The development of an m-Health application could become a complementary monitoring tool during palliative care. However, it seems important to question the impact of technique in the professional–patient relationship and avoid the pitfalls of standardizing palliative care and reducing the patient to a “sick” health technician. A future step would then be to define which health-care professional would be in charge of this “m-monitoring.”
Elderly patients with advanced chronic kidney disease have high symptom burden, despite the progress in renal replacement therapy. Dialysis is not a good option especially for frail elderly patients with higher comorbidity rate. Integration of palliative and supportive care to conservative management improves quality of life and prolongs survival of these patients. Conservative management of symptoms, prognostication, communication of advance care plans and shared-decision making should be a part of physicians skills. There are some recommended prognostication systems in nephrology, which can help to facilitate the physician-patient communication about therapeutic goals of care. Ethical and jural aspects of the process are also very important.
Context: Patients with advanced chronic obstructive pulmonary disease (COPD) can develop increasing breathlessness, which can persist despite optimal medical management—refractory breathlessness. Management can be challenging for all clinicians and requires a broad approach that includes optimization of disease directed therapies, non-pharmacological strategies to manage breathlessness and for some patients opioids.
Objectives: To explore the approaches to breathlessness management and palliative care undertaken by Australian General Practitioners (GP) for patients with severe COPD and refractory breathlessness.
Methods: A case-vignette based survey was conducted with Australian GPs to determine their approaches to breathlessness management and palliative care in COPD.
Results: Of the 137 GPs, 66% recommended commencing an additional medication to manage refractory breathlessness. Thirty-eight GPs (28%) recommended opioids and 26 (19%) recommended guideline discordant treatments. Two-thirds of GPs had concerns regarding the use of opioids in COPD. Half (55%) of GPs were comfortable providing general palliative care to patients with COPD and 62 (45%) had referred patients with COPD to specialist palliative care services. Most respondents wanted further training to manage severe COPD and severe chronic breathlessness.
Conclusion: Most GPs recognized and were willing to add specific treatments for severe chronic breathlessness. However, experience prescribing opioids for severe chronic breathlessness was low, with many practitioners holding significant concerns regarding adverse effects. Many GPs are uncomfortable offering a palliative approach to their COPD patients, yet these patients are not routinely referred to specialist palliative care services despite their immense needs. GPs therefore desire education and support to overcome these barriers.
Non-communicable chronic diseases (NCCDs) are the main cause of morbidity and mortality globally. Demographic aging has resulted in older populations with more complex healthcare needs. This necessitates a multilevel rethinking of healthcare policies, health education and community support systems with digitalization of technologies playing a central role. The European Innovation Partnership on Active and Healthy Aging (A3) working group focuses on well-being for older adults, with an emphasis on quality of life and healthy aging. A subgroup of A3, including multidisciplinary stakeholders in health care across Europe, focuses on the palliative care (PC) model as a paradigm to be modified to meet the needs of older persons with NCCDs. This development paper delineates the key parameters we identified as critical in creating a public health model of PC directed to the needs of persons with NCCDs. This paradigm shift should affect horizontal components of public health models. Furthermore, our model includes vertical components often neglected, such as nutrition, resilience, well-being and leisure activities. The main enablers identified are information and communication technologies, education and training programs, communities of compassion, twinning activities, promoting research and increasing awareness amongst policymakers. We also identified key 'bottlenecks': inequity of access, insufficient research, inadequate development of advance care planning and a lack of co-creation of relevant technologies and shared decision-making. Rethinking PC within a public health context must focus on developing policies, training and technologies to enhance person-centered quality life for those with NCCD, while ensuring that they and those important to them experience death with dignity.
PURPOSE: To investigate the effectiveness of a structured death education program for older adults with chronic illness and their family caregivers.
METHODS: This study adopted two-group, non-randomized quasi-experimental design. Patient-caregiver dyads in the intervention group (N=40 dyads) engaged in the death education program at the bedside once a week for five weeks, were compared with participants (N=40 dyads) in the control group received usual health education. The program consisted of five sessions based on the Interaction Model of Client Health Behavior. Death attitude, death competence, well-being, family function and satisfaction were measured at baseline (T0), immediately after the intervention (T1) and one month later (T2). Data collection was conducted from July 30, 2019 to December 30, 2019.
RESULTS: The intention-to-treat analysis of between groups at 1-month follow-up revealed that the intervention group had greater decreases in the fear of death (p=.002, p<.001) and death avoidance (p<.001, p<.001), had greater increases in the neutral acceptance (p=.032, p<.001) and death competence (p<.001, p<.001) in patients and caregivers, respectively. There were significant intergroup differences over time for patient well-being of 6.40 (3.06, 9.74) and satisfaction of 3.30 (2.01, 4.59), with both p<.001. Results were consistent with the results from the sensitivity analysis.
CONCLUSIONS: This study demonstrated the feasibility and benefits of death education in hospitals and provided an implementation plan for nursing professionals. Nurses should consider providing death education for older adults with chronic diseases and their families to promote the development of palliative care and the quality of end-of-life.
BACKGROUND: Chronic obstructive pulmonary disease is associated with an uncertain trajectory, which challenges prognostication and means that most patients are not involved in advance care planning and do not receive palliative and end-of-life care.
AIM: To understand the preferences of patients with chronic obstructive pulmonary disease for discussions about palliative and advance care planning with clinicians.
DESIGN: Semi-structured interviews were conducted with patients with chronic obstructive pulmonary disease. Data analysis was guided by principles of interpretative phenomenological analysis, of which symbolic interactionism and interpretation principles were employed throughout.
SETTING/PARTICIPANTS: A total of 33 British patients with chronic obstructive pulmonary disease at different stages of their disease trajectory were recruited.
RESULTS: Patients preferred to discuss palliative care with clinicians they perceived had greater levels of competency and authority in care and with whom they had an established relationship, usually a specialist. Patients favoured large amounts of information about treatments and care, but reported a lack of illness-related information and problems accessing appointments with clinicians. Consequently, patients deferred discussions to the future, usually once their condition had deteriorated significantly or planned to wait for clinicians to initiate conversations. This was not rooted in patient preferences, but related to clinicians' lack of time, absence of an established relationship and belief that appointments were for managing current symptoms, exacerbations and disease factors rather than future care and preferences.
CONCLUSION: Different perceptions, competing priorities and service rationing inhibit patients from initiating early discussions with clinicians, so palliative care conversations should be initiated by respiratory-expert clinicians who know the patient well. After a sudden deterioration in the patient's condition may be a suitable time.
BACKGROUND: A previous study found that care provided by a nurse practitioner (NP) during oncological or palliative care was highly regarded. These patients, however, were considered a special population due to suffering from life-threatening illnesses. It remains unclear whether the results are transferable to patients with chronic conditions. Patient's perceptions of the quality of NP care have reflected that it equals or exceeds that of physicians, but the root causes of these remarks remain unclear.
PURPOSE: To describe the difference in perception of NP care by patients suffering from chronic heart failure (CHF) or inflammatory bowel disease (IBD) in contrast with NP oncological or palliative care.
METHODOLOGICAL ORIENTATION: A qualitative study from a phenomenological perspective was conducted. Data were analyzed using Colaizzi's seven-step method and the Metaphor Identification Procedure.
SAMPLE: In 2018 and 2019, 16 outpatients receiving CHF or IBD care were interviewed.
CONCLUSIONS: Although chronic and life-threatening diseases may differentiate patients' perspectives, it can be generally stated that patients value NPs to be reliable, helpful, and empathic. Patients feel empowered, at peace and in control thanks to integrated care by dedicated experts.
IMPLICATIONS FOR PRACTICE: Outpatients highly appreciate the "communicator role" and "skilled companionship" performed by NPs, to fulfill their needs for attention to the "complete picture." Therefore, further consideration of these competencies is recommended.
BACKGROUND: People living with long-term neurological conditions (LTNC) often require palliative care. Rehabilitation medicine specialists often coordinate the long-term care of these patients.
OBJECTIVE: The aim of the present review was to undertake systematic literature searches to identify the evidence on palliative care for people with LTNC to guide rehabilitation medicine specialists caring for these patients in the UK.
METHODS: We searched for evidence for (1) discussion of end of life, (2) planning for end-of-life care, (3) brief specialist palliative care interventions, (4) support for family and carers, (5) training of rehabilitation medicine specialists in palliative care, and (6) commissioning of services. The databases searched were MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, NHS Economic Evaluation Database and Health Technology Assessment Database. Evidence was assimilated using a simplified version of the Grading of Recommendations Assessment, Development and Evaluation method.
RESULTS: We identified 2961 records through database searching for neurological conditions and 1261 additional records through database searches for specific symptoms. We removed duplicate records and conference presentations. We screened 3234 titles and identified 330 potentially relevant abstracts. After reading the abstracts we selected 34 studies for inclusion in the evidence synthesis.
CONCLUSIONS: From the evidence reviewed we would like to recommend that we move forward by establishing a closer working relationship with specialists in palliative care and rehabilitation medicine and explore the implications for cross-specialty training.
Background: Latinos are the largest minority group in the United States and when compared with non-Latino whites suffer from higher rates of certain chronic diseases. Latino community health workers (promotores de salud) are successful in improving the health of their communities. However, evidence of their effectiveness in increasing awareness of palliative care (PC) is limited.
Objective: To evaluate the feasibility of applying a promotores de salud model to improve PC awareness among Latinos within the context of chronic disease management.
Methods: Bilingual promotores from Familias en Acción trained 76 southern California promotores on PC and chronic disease management. Promotores agreed to disseminate the information learned to 10+ Latino community members. The strengths of the curriculum and the community's needs were identified during phone interviews six months post-training.
Results: In 406 diverse settings, 69 promotores trained 2734 community members. Interviews with promotores at follow-up established four themes: (1) holistic health in chronic disease management; (2) communication with doctors; (3) shared decision making, patients' rights, and control; and (4) need for PC information (awareness, access, and support groups).
Conclusion: Promotores proved effective at disseminating information related to PC within chronic disease management to Latino community members. Future training should include information on support groups and where caregivers can seek help while caring for those with a terminal disease.
Despite the progressive nature of chronic obstructive pulmonary disease (COPD), its association of high morbidity and mortality with severe COPD, and the view that discussions between patients and clinicians about palliative care plans should be grounded in patients' preferences, many older patients do not receive timely end-of-life care (EOLC) discussions with healthcare professionals (HPs), potentially risking inadequate care at the advanced stages of the disease. The aim of this pilot study was to evaluate EOLC discussions and resuscitation issues as a representative and illustrative part within EOLC in older patients with COPD in the University Hospital Center Osijek, Slavonia (Eastern Region), Croatia, as such data have not yet been explored. The study was designed as cross-sectional research. Two groups of participants, namely, patients at least 65 years old with COPD and healthcare professionals, were interviewed anonymously. In total, 83 participants (22 HPs and 61 patients with COPD) were included in the study. According to the results, 77% of patients reported that they had not had EOLC discussions with HPs, 64% expressed the opinion that they would like such conversations, and the best timing for such discussion would be during frequent hospital admissions. Furthermore, 77% of HPs thought that EOLC communication is important, but only 14% actually discussed such issues with their patients because most of them felt uncomfortable starting such a topic. The majority of older patients with COPD did not discuss advanced care planning with their HPs, even though the majority of them would like to have such a discussion. EOLC between HPs and older patients with COPD should be encouraged in line with patients' wishes, with the aim to improve their quality of care by anticipating patients' likely future needs in a timely manner and thereby providing proactive support in accordance with patients' preferences.
OBJECTIVE: This review will explore definitions of early palliative care and describe how it has been implemented for those diagnosed with a life-limiting chronic illness.
INTRODUCTION: People with life-limiting chronic illnesses who receive palliative care interventions have increased quality of life, better symptom management, and are more likely to have advance care plans than patients who do not. It is therefore best practice to encourage early identification of those in need of palliative care services. However, there is uncertainty over what is considered to be "early palliative care" and this presents a barrier to evaluating outcomes associated with it.
INCLUSION CRITERIA: All literature that defines an early palliative care approach in adults (aged 18+) with a life-limiting chronic illness will be included in this review.
METHODS: This scoping review will be completed using the JBI scoping review methodology. A comprehensive search of academic and gray literature using MEDLINE (Ovid), CINAHL (EBSCO), Embase (Ovid), PsycINFO (Ovid), Web of Science Core Collection, Ovid Cochrane Library, and ProQuest (Health and Medicine and Sociology Collections) will be utilized. Once screened by two reviewers, results will be extracted using a customized tool and summarized into a final report using a narrative synthesis presented in table form.
Most older adults living with chronic illness prefer palliation of symptoms at home rather than invasive therapies or hospitalization at the end of life. In the United States, death occurring at home has become more common than death occurring in the hospital. However, national patterns may overlook important regional variation in end-of-life (EOL) care. Additionally, research is lacking on these patterns among the increasing population of older adults with chronic illness. Therefore, we sought to assess recent temporal patterns and regional variation in end-of-life health care use by Medicare beneficiaries with chronic illness.
Chronic obstructive pulmonary disease (COPD) is a chronic disease that burdens patients worldwide. This study aims to discover the burdens of health services among COPD patients who received palliative care (PC). Study subjects were identified as COPD patients with ICU and PC records between 2009 and 2013 in Taiwan's National Health Insurance Research Database. The burdens of healthcare utilization were analyzed using logistic regression to estimate the difference between those with and without cancer. Of all 1215 COPD patients receiving PC, patients without cancer were older and had more comorbidities, higher rates of ICU admissions, and longer ICU stays than those with cancer. COPD patients with cancer received significantly more blood transfusions (Odds Ratio, OR: 1.66; 95% C.I.: 1.11-2.49) and computed tomography scans (OR: 1.88; 95% C.I.: 1.10-3.22) compared with those without cancer. Bronchoscopic interventions (OR: 0.26; 95% C.I.: 0.07-0.97) and inpatient physical restraints (OR: 0.24; 95% C.I.: 0.08-0.72) were significantly more utilized in patients without cancer. COPD patients without cancer appeared to receive more invasive healthcare interventions than those without cancer. The unmet needs and preferences of patients in the life-limiting stage should be taken into consideration for the quality of care in the ICU environment.
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.