Context: Previous work has found that facilitated advance care planning (ACP) interventions are effective in increasing ACP uptake among patients with severe respiratory disease.
Objectives: The objective of this study was to investigate whether a nurse-led, facilitated ACP intervention among participants with severe respiratory disease impacts self-reported or clinical outcomes.
Methods: A multicenter, open-label, patient-preference, randomized controlled trial of a nurse-led facilitated ACP intervention was performed. Outcome measures included self-report scales (health care satisfaction and EQ-5D-5L health-related quality of life at three- and six-month follow-up), 12-month mortality, and health care utilization during the final 90 days of life.
Results: One hundred forty-nine participants were recruited across two study settings (metropolitan tertiary hospital respiratory department and rural sites) and 106 were allocated to receive the ACP intervention. There was no effect of the intervention on satisfaction with health care, health-related quality of life, or 12-month mortality rates. Among those participants who died during the follow-up period (N = 54), those allocated to the ACP intervention had significantly fewer outpatient consultations (7.51 vs. 13.6, P < 0.001). There were no changes in emergency department attendances, total hospital admissions or length of stay, or home nursing visits. Among those allocated to the ACP intervention, there was a reduced length of stay in acute hospital settings (7.76 vs. 11.5 nights, P < 0.001) and increased length of stay in palliative hospital settings (5.54 vs. 2.08, P < 0.001) during the final 90 days of life.
Conclusion: A facilitated ACP intervention among patients with severe respiratory disease did not have an impact on satisfaction, health-related quality of life, or 12-month mortality rate. Facilitated ACP may be associated with a different type of health care utilization during the end-of-life period.
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.
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.
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.
Aim: To pilot test a home end-of-life and palliative care intervention for family caregivers and patients with rare advanced lung diseases and estimate effect-size for the power analysis in a future clinical trial.
Design: This study uses a parallel randomized control trial. Families are randomly assigned to the intervention group or the control group in a 1:1 fashion.
Methods: The study population includes patients with rare advanced lung diseases and their family caregivers who are involved in patients’ home care. The control group receives standard care through their hospital or outpatient clinics. The intervention group receives standard care plus 2-weekly home end-of-life and palliative care coaching by experienced community nurses. Primary outcome is breathlessness measured by shortness of breath scale. Secondary outcomes are: (1) caregivers’ anxiety and depression measures; (2) the presence of patient’s signed advance directives in the medical record or not; and (3) Helpfulness of intervention measured by self-report Helpfulness scale. The study was funded in October 2018 and received ethical Institutional Review Board approval in February 2019.
Discussion: West Virginia has one of the highest incidence rates of lung disease deaths in the nation. However, there is inadequate home end-of-life and palliative care for this underserved population. This is an initial interventional study of nurse-led coaching home-based palliative care for rare advanced lung diseases in rural Appalachia. Developing research collaboration with clinicians is essential for enrollment. Enrollment was successful due to regular meetings with pulmonologists who screened patients per the study inclusion criteria in their specialty clinic and made direct referrals to the research assistants. Results of this study will be used in the future trial.
Impact: The findings will contribute to the evidence-based home nursing care, planning for family/patient preferences and supportive end-of-life palliative care for managing advanced lung diseases at home.
INTRODUCTION: Advance care planning (ACP) discussions help guide future medical care consistent with patient wishes. These discussions should be a part of routine care and should be readdressed frequently as a patient's medical condition changes. Limited literature exists supporting structured processes for identifying persons who may benefit from these conversations. The purpose of this integrative review was to understand whether targeting patients with episodic disease trajectories in the acute care setting will increase their willingness to participate in ACP discussions.
METHODS: Using the Johns Hopkins Nursing Evidence-Based Practice Model as a guideline, this integrative review focused on the research query "In the acute care setting, does targeting patients with heart failure or chronic obstructive pulmonary disease for ACP lead to increased willingness to participate in these discussions." Articles from 2009 to September 2019 were considered for review.
RESULTS: Six articles met inclusion criteria for final analysis. Articles outside of the United States were excluded. Four themes emerged from the literature: (1) improved patient attitudes toward ACP, (2) effective communication surrounding care preferences, (3) strengthened connection between preferred and delivered care, and (4) increased patient involvement in ACP.
CONCLUSION: Chronic diseases such as heart failure and COPD have a high symptom burden punctuated by exacerbations, making it difficult to know when introduction of ACP discussions would be most beneficial. Future research should focus on a deeper evaluation of when to introduce ACP conversations in this population and which ACP interventions are effective to facilitate these discussions.
RATIONALE: Even though Idiopathic pulmonary fibrosis (IPF) is a disease with high morbidity and mortality and no cure, palliative care is rarely implemented, leading to high symptom burden and unmet care needs. In 2012 we implemented a Multidisciplinary Collaborative (MDC) care model linking clinic and community multidisciplinary teams to provide an early-integrated palliative approach, focusing on early symptom management and advanced care planning (ACP).
OBJECTIVES: This study evaluates the differences in resource utilization and associated costs of end-of-life care between early-integrated palliative and conventionally treated IPF patients.
METHODS: Using administrative health data, we identified all patients in Alberta who presented to hospital with an IPF diagnosis between Jan 1, 2012 and Dec 31, 2018 and died within this timeframe. We compared 3 groups of patients: those who received (1) MDC care (our clinic patients), (2) specialist care (SC; respirologist), and (3) non-specialist care (NSC; no contact with a respiratory clinic). The primary outcomes were health care resource utilization and costs in the year before death.
RESULTS: Of 2,768 patients across three groups, MDC patients were over 3 times more likely to have received anti-fibrotic therapies over SC patients (OR=3.0; 95%CI 1.8-5.2), almost twice as likely to receive pulmonary rehab (OR=1.9; 95%CI 1.1-3.4) and 36% more likely to receive opiates (OR=1.4; 95%CI 0.8-2.3) in the last year of life. The median total health care costs in the last 3 months of life were approximately $7,700 CDN lower for MDC patients compared to those receiving specialist care, driven primarily by fewer hospitalizations and ED visits. MDC patients were also less likely to die in hospital (44.9% MDC vs 64.9% SC vs 66.8% NSC, p<0.001) and had the highest rates of no hospitalization in the last year of life.
CONCLUSIONS: An integrated palliative approach in IPF is associated with improvements in the quality of end-of-life care and reduction in costs. Transformation of care models is required to deliver a palliative approach in IPF. Multidisciplinary collaborative teams within such models can address the high burden of unmet needs for symptom management, advance care planning (ACP) and community support in this complex population.
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.
Chronic respiratory diseases are progressive and often life-limiting illnesses. Patients experience debilitating and troubling symptoms that impact on their quality of life. Despite this, there is under-recognition of patients who may be entering the final year of their life and require palliative care services. The Royal Wolverhampton NHS Trust in partnership with Compton Care has established chronic respiratory disease multidisciplinary team meetings and a combined respiratory and palliative care outpatient clinic to address these issues. This article presents the impact of this service, now in to its fourth year, of delivering palliative care services to patients with chronic respiratory disease.
Objectives: While guidelines recommend palliative care in non-cancer conditions, this has not been widely implemented. We examined whether the recording of a palliative care approach and the numbers of hospital deaths for deceased patients with heart failure, dementia, chronic obstructive pulmonary disease (COPD) and cancer have changed since the UK End-of-Life Care Strategy was introduced.
Methods: We conducted sequential cross-sectional studies of decedents within the UK’s Clinical Practice Research Datalink and Hospital Episode Statistics. All adults with a primary care record of COPD (n=5426), dementia (n=7339), heart failure (n=6409) or cancer (n=18 668) who died during three 1 year periods (April 2009 to March 2014) were included. Evidence of a palliative care approach was identified from primary care records, and death in hospital from secondary care data.
Results: From 2009 to 2014, proportions with a primary care record of palliative care increased for COPD from 13.6% to 21.2%; dementia from 20.9% to 40.7%; and heart failure from 12.6% to 21.2%; but remained substantially lower than for cancer (57.6% to 61.9%). Median days before death of recording improved for COPD (145 to 224) and dementia (44 to 209); but not for heart failure (168.5 to 153) and cancer (123 to 114). Trends in hospital deaths were not consistently downward, although the proportions of patients dying in hospital were lower in the last period compared with the first.
Conclusions: Recording of a palliative care approach for non-cancer conditions has increased since the introduction of the UK End-of-Life Care Strategy, but remains inadequate.
Background: Idiopathic pulmonary fibrosis (IPF) is a fatal disease that results in poor quality of life due to progressive respiratory symptoms, anxiety, and depression. Palliative care improves quality of life and survival in other progressive diseases. No randomized controlled trials have investigated the impact of palliative care on quality of life, anxiety, or depression in IPF.
Methods: We conducted a randomized, controlled, pilot study to assess the feasibility of measuring the effect of a palliative care clinic referral on quality of life, anxiety, and depression in IPF. Patients were randomized to usual care (UC) or usual care + palliative care (UC + PC) with routine pulmonary follow up at 3 and 6 months. The UC + PC group received a minimum of one PC clinic visit. Primary outcome was change from baseline in quality of life, anxiety, and depression as measured by the St. George’s Respiratory Questionnaire (SGRQ), the Hospital Anxiety and Depression Index (HADS), and the Patient Health Questionnaire (PHQ-9) at 6 months.
Results: Twenty-two patients were randomized between September 2017 through July 2018; 11 to UC and 11 to UC + PC. There was no difference in the change in SGRQ score at 3 months or 6 months, however, the symptom score trended towards a significant worsening for UC + PC at both 3 and 6 months (mean change at 3 months for UC and UC + PC was - 7.8 and + 10.7, respectively, p = 0.066; mean change at 6 months for UC and UC + PC was - 6.0 and + 4.6, respectively, p = 0.055). There was no difference in the change in HADS anxiety or depression scores. There was a significant transient worsening in PHQ-9 scores for UC + PC at 3 months (UC: -1.6, UC + PC: + 0.9, p = 0.008); this effect did not persist at 6 months.
Conclusion: This pilot study demonstrated that a randomized controlled trial of palliative care in idiopathic pulmonary fibrosis patients is feasible. Receiving palliative care did not lead to improved quality of life, anxiety, or depression compared to usual care after 6 months. Patients in the UC + PC group trended towards worsening symptoms and a small but statistically significant transient worsening in depression. These findings should be interpreted with caution, and need to be evaluated in adequately powered clinical trials. NCT03981406, June 10, 2019, retrospectively registered.
Background: End-of-life spending and health care utilization in older adults with COPD have not been previously described.
Methods: We examined data from Medicare beneficiaries =65 years with COPD who died between 2013-2014. End-of-life measures were retrospectively reviewed for two years prior to death. Hospital referral regions (HRRs) were categorized into quintiles of age-sex-race-adjusted overall spending during the last two years of life. We examined geographic and spending quintile variation in spending and health care utilization across the continuum.
Results: We investigated data from 146,240 decedents with COPD from 306 HRRs. Age-sex-race-adjusted overall spending per-decedent during the last two years of life varied significantly nationwide ($61,271±$11,639 per decedent; range: $48,288±$3,665 to $79,453±$9,242). Inpatient care accounted for 40.2% of spending ($24,626±$6,192 per decedent). Overall, 82%±4% of decedents were admitted to the hospital for 13.7±3.1 days and 55%±11% to an intensive care unit for 5.4±2.5 days. Compared to HRRs in the lowest spending quintile, HRRs in the highest spending quintile had 1.5-fold longer hospital length of stay. Skilled nursing facilities accounted for 11.6% of spending ($7101±$2403 per decedent) and were used by 38%±7% of decedents for 18.7±4.9 days. Hospice accounted for 10.3% of spending ($6,307±$2,201 per decedent) and was used by 47%±9% of decedents for 39.7±14.8 days. Significant geographic variation in hospice use existed nationwide.
Conclusions: End-of-life spending and healthcare utilization in older adults with COPD varied substantially nationwide. Decedents with COPD frequently used acute and post-acute care near the end of life. Hospice use was higher than expected, with significant geographic disparities.
Chronic obstructive pulmonary disease (COPD) is common chronic respiratory disorder, predominantly caused by exposure to cigarette smoke or biomass fuels, and it usually affects older adults. Dyspnea in COPD that is unresponsive to traditional management is a challenging disease complication for both the patient and the health care professional. Off-label use of opioids has been advocated as a pharmacotherapy strategy for refractory dyspnea. However, negative respiratory outcomes are a potential concern with opioids drugs, especially among individuals with COPD. In this review, randomized controlled trials evaluating opioid efficacy among individuals with COPD are reviewed and critically analyzed, and data from observational drug safety studies is also presented. In summary, the evidence in support of using opioids for refractory dyspnea in COPD is minimal and weak, and there is mounting data demonstrating that opioids are associated with increased respiratory-related morbidity and mortality in this population. Therefore, current evidence does not support the broad application of opioids for refractory dyspnea among individuals with COPD. However, there may be subsets of individuals that experience modest improvement in dyspnea with opioids, and better understanding predictors and mechanisms of such opioid responsiveness should be a focus of future research endeavours.
CONTEXT: Individuals with chronic obstructive pulmonary disease (COPD) typically experience a gradual worsening of the illness in the years prior to death. Due to difficulties in predicting the disease trajectory or the timing of acute exacerbations, advance care planning (ACP) may be of particular importance for individuals with COPD.
OBJECTIVES: To review and summarise the available literature on current practices around ACP in COPD.
METHODS: A scoping review of the literature was conducted following the Arksey and O'Malley framework . Original research studies of any design were included.
RESULTS: Twenty-eight studies were included. Across studies, there was agreement that ACP should be incorporated into routine COPD management. There was evidence that this does not occur in everyday practice, with conversations tending to focus on day-to-day symptom management. Barriers included prognosis uncertainty, insufficient time and training, and a lack of protocols for who is responsible for initiating ACP. Facilitators included the use of transition points for identifying the appropriate time to initiate ACP, and an increased focus on ACP in professional education. The occurrence of repeated episodes of acute care was identified as a key transition point for identifying the palliative stage of COPD and an appropriate time to initiate ACP.
CONCLUSION: The findings of this review confirm agreement among healthcare professionals and patients with COPD and their carers that ACP should be incorporated into routine COPD management. The use of transition points may help healthcare professionals overcome the barrier of prognosis uncertainty, and identify patients that might benefit from ACP.
Objectives: To examine current practices, attitudes and levels of confidence related to advance care planning (ACP) in patients with chronic obstructive pulmonary disease (COPD) among healthcare professionals working in Ireland. This will inform future clinical guidance development.
Methods: A cross-sectional survey of healthcare professionals.
Results: There were 143 participants (109 general practitioners, 25 nurses, 7 physiotherapists and 2 consultant physicians). The majority (82%, n=117) cared for patients with COPD weekly, but only 23% (n=33) had initiated ACP with a patient with COPD over the previous 6 months. Overall, 59% (n=85) answered =6 of 8 general knowledge questions correctly. Participants demonstrated positive attitudes towards ACP (mean score 3.6/5.0), but confidence levels were low (2.2/4.0). Most thought ACP was appropriate for patients with severe or very severe COPD (71%, n=101%, and 91%, n=130, respectively) but were unsure or felt that it was not appropriate for those with mild–moderate COPD. However, almost all participants (97%, n=139) stated that if a patient expressed a desire to have ACP discussions, they would comply. Topics most likely to be discussed related to diagnosis and treatment options. Death and end-of-life issues were rarely discussed. The death of a family member or friend and participation in support groups were identified as new ‘triggers’ for initiating ACP.
Conclusions: Targeted education to improve general knowledge and confidence levels among healthcare professionals, together with initiatives to increase public awareness of ACP so that patients themselves might be more inclined to start the discussion, may help increase the uptake of ACP for this patient group.
Background: Guidelines recommend that pulmonary clinicians involve palliative care in chronic obstructive pulmonary disease (COPD); however, integration before advanced stage, that is, early palliative care, is rare.
Objective: To explore and compare pulmonary and palliative care clinician perspectives on barriers, facilitators, and potential referral criteria for early palliative care in COPD.
Design: Qualitative descriptive formative evaluation study.
Setting/Subjects: pulmonary and palliative care clinicians at a tertiary academic medical center.
Measurements: Transcribed interviews were thematically analyzed by specialty to identify within- and across-specialty perspectives on barriers, facilitators, and referral criteria.
Results: Twelve clinicians (n = 6 pulmonary, n = 6 palliative care) participated. Clinicians from both specialties agreed that early palliative care could add value to disease-focused COPD care. Perspectives on many barriers and facilitators were shared between specialties along broad educational, clinical, and operational categories. Pulmonary and palliative care clinicians shared concerns about the misconception that palliative care was synonymous to end-of-life care. Pulmonologists were particularly concerned about the potential risks of opioids and benzodiazepines in COPD. Both specialties stressed the need for clearly defined roles, consensus referral criteria, and novel delivery models. Although no single referral criterion was discussed by all, frequent hospitalizations and emotional symptoms were raised by most across disciplines. Multimorbidity and poor prognosis were discussed only by palliative care clinicians, whereas medication adherence was discussed only by pulmonary clinicians.
Conclusions: Pulmonary and palliative care clinicians supported early palliative care in COPD. Continued needs include addressing pulmonologists' misconceptions of palliative care, establishing consensus referral criteria, and implementing novel early palliative care models.
BACKGROUND: While early-integrated palliative home care (PHC) is believed to be beneficial for COPD patients, trials testing this hypothesis are rare and show inconclusive results.
AIM: To test feasibility, acceptability and preliminary effectiveness of early-integrated PHC for end-stage COPD.
METHOD: Testing a six-month early-integrated PHC pilot RCT given by PHC nurses for end-stage COPD with five components: (1) pre-inclusion COPD support training for PHC nurses; (2) monthly PHC visits; (3) leaflets on coping mechanisms; (4) a protocol on symptom management and support, a care and action plan; (5) integration of PHC and usual care through reporting and communication mechanisms. Patient-reported outcomes were assessed six-weekly. Participants and healthcare professionals involved were interviewed.
RESULTS: Of 70 eligible patients, 39 (56%) participated (20:19 intervention-control) and 64% completed the trial. A patient received on average 3.4 PHC visits, mainly for disease insight, symptom management and care planning. Nurses distributed all reports but hardly connected with health professionals except general practitioners (GPs); 8/10 interviewed patients referred to the psychosocial support, breathing exercises and care decisions as helpful. Some GPs criticised PHC being given too early but pulmonologists and PHC nurses did not. Effectiveness analysis showed no overall intervention effect for the outcomes, but between baseline and week 24 fewer hospitalisations in the control group (p=0.03) and a trend of higher perceived quality of care in the intervention group (p=0.06) was found. A clinically relevant difference was observed at week 24 for health-related quality of life in favour of the control group.
CONCLUSION: Our intervention on early-integrated PHC for end-stage COPD is feasible and accepted but did not yield the anticipated preliminary effectiveness. Before moving to a Phase III-trial, enhanced coordination of care, more GP involvement, more intensive training for PHC nurses in COPD support and revision of the trial design, e.g. of targeted outcomes in line with individual patient goals and care preferences should be improved.
Introduction: End-stage chronic obstructive pulmonary disease (COPD) patients with acute respiratory failure are often treated by representatives from different medical specialties. This study investigates if the choice of treatment is influenced by the medical specialty.
Methods: An online cross-sectional survey among four Austrian medical societies was performed, accompanied by a case vignette of a geriatric end-stage COPD patient with acute respiratory failure. Respondents had to choose between noninvasive ventilation (NIV), a conservative treatment attempt (without NIV) and a palliative approach. Ethical considerations and their impact on decision making were also assessed.
Results: Responses of 162 physicians (67 from intensive care units (ICUs), 51 from pulmonology or internal departments and 44 from geriatric or palliative care) were included. The decision for NIV (instead of a conservative or palliative approach) was associated with working in an ICU (OR 14.9, 95% CI 1.87-118.8) and in a pulmonology or internal department (OR 9.4, 95% CI 1.14-78.42) compared with working in geriatric or palliative care (Model 1). The decision for palliative care was negatively associated with working in a pulmonology or internal department (OR 0.16, 95% CI 0.05-0.47) and (nonsignificantly) in an ICU (OR 0.41, 95% CI 0.15-1.12) (Model 2).
Conclusions: Department association was shown to be an independent predictor for treatment decisions in end-stage COPD with acute respiratory failure. Further research on these differences and influential factors is necessary.
Purpose: Among individuals with COPD and/or lung cancer, to describe end-of-life health service utilization, costs, and place of death; to identify predictors of home palliative care use, and to assess benefits associated with palliative care use.
Patients and methods: We conducted a retrospective population-based study using provincial linked health administrative data (Ontario, Canada) between 2010 and 2015. We examined health care use in the last 90 days of life in adults 35 years and older with physician-diagnosed COPD and/or lung cancer identified using a validated algorithm and the Ontario Cancer Registry, respectively. Four mutually exclusive groups were considered: (i) COPD only, (ii) lung cancer only, (iii) COPD and lung cancer, and (iv) neither COPD nor lung cancer. Multivariable generalized linear models were employed.
Results: Of 445,488 eligible deaths, 34% had COPD only, 4% had lung cancer only, 5% had both and 57% had neither. Individuals with COPD only received less palliative care (20% vs 57%) than those with lung cancer only. After adjustment, people with lung cancer only were far more likely to receive palliative care (OR=4.22, 4.08-4.37) compared to those with neither diagnosis, while individuals with COPD only were less likely to receive palliative care (OR=0.82, 0.81-0.84). Home palliative care use was associated with reduced death and fewer days in acute care, and less cost, regardless of the diagnosis.
Conclusion: Although individuals with lung cancer were much more likely to receive palliative care than those with COPD, both populations were underserviced. Results suggest greater involvement of palliative care may improve the dying experience of these populations and reduce costs.