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.
Background: Fibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals’ perspectives.
Methods: A survey study of healthcare professionals, including respiratory physicians, interstitial lung disease nurse specialists, respiratory nurse specialists and palliative care physicians, was conducted using a questionnaire, entailing 17 questions.
Results: Thirty-six respondents, including 15 interstitial lung disease nurse specialists completed the questionnaire. Symptom control, psychological/spiritual support, general deterioration and end-of-life care were the most common reasons for referrals to specialist palliative care services. Most respondents felt confident in addressing palliative care needs and discussing palliative care with patients. A few participants emphasised that experienced respiratory nurse specialists are well placed to provide symptom management and to ensure continuity of patient care. Participants reported that access to palliative care could be improved by increasing collaborative work between respiratory and palliative care teams.
Conclusions: Most respondents felt that enhancing access to specialist palliative care services would benefit patients. However, palliative care and respiratory care should not be considered as mutually exclusive and multidisciplinary approach is recommended.
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 and objective: Though idiopathic pulmonary fibrosis (IPF) has worse outcomes compared to most malignancies, patients with IPF receive poor access to optimal palliative care. This study aimed to characterise the practice of pulmonologist’s regarding palliative care and end of life communication for patients with IPF and identify perceived difficulties and barriers thereto.
Methods: Self-administered questionnaires were sent by mail to representative pulmonologists from Shizuoka prefecture, Japan. Physician-reported practice, difficulties, timing of end of life communication and barriers related to palliative care were investigated.
Results: Among the 135 participants, 130 (96%) completed the questionnaire. Most of the participants reported that patients with IPF complained of dyspnoea and cough. However, less morphine was prescribed for IPF than for lung cancer. The participants experienced greater difficulty in providing palliative care for IPF than for lung cancer. Moreover, actual end of life discussions in patients with IPF were conducted later than the physician-perceived ideal timing. Among the barriers identified, few established treatment and difficulty in predicting prognosis [odds ratio (OR) 2.0; p = 0.04], discrepancies in understanding and care goals among patients, family and medical staff (OR 2.2; p = 0.03) and inadequate communication about goal of care (OR 2.3; p = 0.003) were significantly associated with the physician-perceived difficulties in providing palliative care for patients with IPF.
Conclusions: Pulmonologists experienced greater difficulty in providing palliative care to patients with IPF than to those with lung cancer. Clinical studies on the optimal palliative care for patients with IPF are urgently required.
Introduction: Patients with chronic obstructive pulmonary disease and interstitial lung disease have a significant burden of symptoms. Many are not offered palliative care (PC). Our aim was to investigate the attitudes to and barriers for PC among physicians.
Method: A web-based survey was conducted among members of the Danish Respiratory Society. The questionnaire included contextual (gender, age, clinical experience, type of center, patient caseload) and outcome questions (knowledge and use of statements for PC and advance care planning [ACP], practice of communication about end-of-life decisions, practice for referral to PC, barriers regarding structural surroundings, clinical skills, and organization).
Results: One hundred fifty-six (45%) physicians responded. Median age was 40 - 49 years and 55% were female. Fifty-two percent were specialists; 71% worked at a university hospital. The majority of physicians (60%) reported barriers for discussions about PC and ACP; 63% reported lack of time, 52% lack of multidisciplinary staff settings, 63% reported the unpredictability of the prognosis, and 20% insufficient awareness of patient's culture, religion, or spirituality. Fewer specialists than nonspecialists reported barriers toward ACP. The majority had knowledge of guidelines in PC and ACP, but only a minority used these in daily clinical practice.
Conclusion: The attitude toward PC and ACP conversations was positive and implementation was regarded as important, but only a minority performed these conversations in practice. Main barriers were lack of time and staff. Palliative care guidelines were known but only scarcely used. Structural changes at the organizational level to improve access to palliation for patients with nonmalignant chronic lung diseases are needed.
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.
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.