Chronic obstructive pulmonary disease is a highly symptomatic disease that may lead to significant morbidity. Even with optimal therapy, the patient's quality of life can be severely affected. These symptoms include dyspnea, anxiety, depression, and malnourishment. Palliative care is a branch of medicine that specializes in the care of patients with a terminal illness no matter what stage of the disease they are in. It implements a family-centered approach to help patients deal with their symptoms. It also helps with shared decision-making and advanced care planning.
CONTEXT: Chronic obstructive pulmonary disease (COPD) and lung cancer patients report several symptoms at the end-of-life, and may share palliative care needs. However, these disease groups have distinct healthcare use.
OBJECTIVE: To compare the frequency and length of hospitalisations during the last month of life between COPD and lung cancer patients, assessing the main characteristics associated with these outcomes.
METHODS: Data was retrieved from the Portuguese Hospital Morbidity Database. Deceased patients in a public hospital from mainland Portugal (2010-2015), with COPD as the main diagnosis of the last hospitalisation (n=2942) were sex- and age-matched (1:1) with patients with lung cancer. The association of patients' main diagnosis, and individual, hospital and area of residence characteristics, on frequency (>1) and length (>14 days) of end-of-life hospitalisations were quantified through adjusted odds ratio (OR), and respective 95% confidence intervals (95%CI).
RESULTS: Hospitalisations for >14 days during the last month of life were more likely for lung cancer than COPD patients (OR=1.12, 95%CI:1.00-1.25). Among COPD patients, male sex (OR=1.50, 95%CI:1.25-1.80) and death in a large hospital (OR=1.82, 95%CI:1.41-2.35) were positively associated with longer hospitalisations; the occurrence of >1 hospitalisation and hospitalisations for >14 days were less likely among those from rural areas (OR=0.72, 95%CI:0.55-0.94; OR=0.67, 95%CI:0.54-0.83, respectively). In lung cancer patients, male sex was negatively associated with longer hospitalisations (OR=0.82, 95%CI:0.69-0.98).
CONCLUSIONS: At the end-of-life, lung cancer patients had longer hospitalisations than COPD patients, and the main characteristics associated with the frequency and length of hospitalisations differed according to the patients' main diagnosis.
Primary palliative care is essential for the continuity of care in severe COPD. This study aimed to identify essential factors and aspects to enhance the quality of primary palliative care for adults with severe COPD living in the community. Interviews with medical professionals from six institutions located in two major metropolitan areas in Japan were conducted, and these interviews were analyzed by using a qualitative content analysis approach. Results indicate that effective collaborative communication among team members, long-term care insurance system and related services, and palliative care techniques were the primary themes.
BACKGROUND: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers.
METHODS: An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional's self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research.
DISCUSSION: The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care.
BACKGROUND: Patients have a 'need to know' (instrumental need) and a 'need to feel known' (affective need). During consultations with patients with limited health literacy (LHL) in the palliative phase of their disease, both the instrumental and the affective communication skills of healthcare providers are important. The study aims to explore instrumental and affective communication between care providers and LHL patients in the palliative phase of COPD or cancer.
METHODS: In 2018, consultations between LHL patients in the palliative phase of cancer or COPD and their healthcare providers were video-recorded in four hospitals in the Netherlands. As there was no observation algorithm available for this setting, several items were created to parameterize healthcare providers' instrumental communication (seven items: understanding, patient priorities, medical status, treatment options, treatment consequences, prognosis, and information about emotional distress) and affective communication (six items: hope, support, reassurance, empathy, appreciation, and emotional coping). The degree of each item was recorded for each consultation, with relevant segments of the observation selected and transcribed to support the items.
RESULTS: Consultations between 17 care providers and 39 patients were video-recorded and analyzed. Care providers primarily used instrumental communication, most often by giving information about treatment options and assessing patients' care priorities. Care providers assessed patients' understanding of their disease less often. The patients' prognosis was not mentioned in half the consultations. Within the affective domain, the care providers did provide support for their patients; providing hope, reassurance, empathy, and appreciation and discussing emotional coping were observed less often.
CONCLUSIONS: Care providers used mostly instrumental communication, especially treatment information, in consultations with LHL patients in the palliative phase of cancer or COPD. Most care providers did not check if the patient understood the information, which is rather crucial, especially given patients' limited level of health literacy. Healthcare providers did provide support for patients, but other expressions of affective communication by care providers were less common. To adapt the communication to LHL patients in palliative care, care providers could be less wordy and reduce the amount of information, use 'teach-back' techniques and pay more attention to affective communication.
Limited evidence suggests carers of people with pulmonary fibrosis (PF) have a variety of information and support needs. This pilot focus group discussion, carried out in 2019, aimed to explore the needs of carers of people with pulmonary fibrosis and evaluate the impact of a UK hospice PF carers’ support group. Analysis revealed: (1) loneliness and connection, (2) negotiating with and motivating their loved-ones, and (3) the importance of the best environment for support as key themes. Participants reported a need for both practical and emotional support with the carers’ own health sometimes neglected. This evaluation concluded that peer support specifically with other PF carers was hugely valuable to the participants, as was the hospice environment itself. It is recommended that PF-specific carer support is considered when designing services for people with pulmonary fibrosis.
BACKGROUND: Few studies have focused on patients' emotional distress with end-stage chronic obstructive pulmonary disease (COPD) and their main family caregivers.
METHODS: Cross-sectional data about emotional, functional, and burden-related variables were collected from 85 patients with end-stage COPD and their 85 respective main family caregivers to determine the variables that could predict their emotional well-being. Descriptive analyses, comparison of means, hierarchical regression models, and comparative quali-quantitative analyses were carried out.
RESULTS: Data show that the great majority of patients with COPD spend years with this diagnosis, and have been admitted to the hospital several times in advance stage of illness the previous year of the moment of end-of-life stage. Furthermore, only a tiny percentage of the patients were functionally independent in the advanced stage of illness.
CONCLUSIONS: The emotional distress and the burden of the family caregiver play an essential role in the distress of the patient, in conjunction with the patient's own functional independence and the time living with the disease, and comorbidity. On the other hand, variables of the patient, such as time since diagnosis, number of hospital admissions, comorbidity, functional dependence, and emotional distress, play an important role in the family caregiver's emotional distress and burden. Understanding how these variables are related is key to designing appropriate programs to reduce the emotional distress the patients with COPD at the end of life and their family caregivers.
Background: Home-based palliative care (HBPC) is an important aspect of care for patients with moderate to advanced stages of chronic obstructive pulmonary disease (COPD) and their caregivers. HBPC provides symptom management, advanced care planning and goals of care conversations in the home, with the goal of maximizing quality of life and minimizing health care utilization. There is a gap in the knowledge of how the patients with COPD and their caregivers experience HBPC. The overall purpose of this study is to describe which aspects of HBPC were the most meaningful to patients with COPD, and their caregivers.
Methods: Through a descriptive design with narrative analysis methodology, we interviewed COPD patients and their caregivers to investigate their experience of HBPC received in the 30 days post hospitalization for a COPD exacerbation. A thematic analysis was conducted and the patient and caregiver interviews were analyzed in dyad using thematic analysis.
Results: A total of 10 dyads were interviewed. Patients and their caregivers perceived 3 times as many facilitators as barriers of receiving home-based palliative care in the 30 days post hospitalization for a COPD exacerbation. The outcomes of this study provide information that describes the aspects of HBPC that patients and their caregivers found most meaningful.
Conclusion: An understanding of the most meaningful aspects of HBPC from the perspectives of the patients with COPD and their caregivers can be used to inform the development of the best model for HBPC for this patient population.
Context: Managing activities of daily living is important to people with advanced cancer or chronic obstructive pulmonary disease (COPD). Understanding disability in activities of daily living may inform service planning.
Objective: To identify the prevalence of disability in activities of daily living, associations and change over time, in older people with advanced cancer or COPD.
Methods: Secondary analysis of International Access, Rights and Empowerment (IARE) studies in adults aged =65 years with advanced disease in the UK, Ireland, and USA. Cross-sectional (IARE I & II) and longitudinal (IARE II, 3 timepoints over 6-months) data. Measures: disability in activities of daily living (Barthel Index), symptom severity (Palliative Outcome Scale), assistive device use (self-reported). Logistic regression was used to identify relationships between disability and age, sex, living alone, diagnosis, and symptom burden; Visual Graphical Analysis explores individual disability trajectories.
Results: 159 participants were included (140 cancer, 19 COPD). 65% had difficulty climbing stairs, 48% bathing, 39% dressing, 36% mobilising. Increased disability was independently associated with increased symptom burden (odds ratio [OR], 1.08 [95% CI:1.02-1.15], p=0.01) and walking unaided (z=2.35, p=0.02), but not with primary diagnosis (z=-0.47, p=0.64). Disability generally increased over time but with wide inter-individual variation.
Conclusion: Disability in activities of daily living in advanced cancer or COPD is common, associated with increased symptom burden, and may be attenuated by use of assistive devices. Individual disability trajectories vary widely, with diverse disability profiles. Services should include rehabilitative interventions, guided by disability in individual activities of daily living.
PURPOSE: Multimorbidity is associated with increased intensity of end-of-life healthcare. This association has been examined by number but not type of conditions. Our purpose was to understand how intensity of care is influenced by multimorbidity within specific chronic conditions to provide guidance for interventions to improve end-of-life care for these patients.
METHODS: We identified adults cared for in a multihospital healthcare system who died between 2010-2017. We categorized patients by 4 primary chronic conditions: heart failure, pulmonary disease, renal disease, or dementia. Within each condition, we examined the effect of multimorbidity (presence of 4 or more chronic conditions) on hospital and ICU admission in the last 30 days of life, in-hospital death, and advance care planning (ACP) documentation >30 days before death. We performed logistic regression to estimate associations between multimorbidity and end-of-life care utilization, stratified by the presence or absence of ACP documentation.
RESULTS: ACP documentation >30 days before death was associated with lower odds of in-hospital death for all 4 conditions both in patients with and without multimorbidity. With the exception of patients with renal disease without multimorbidity, we observed lower odds of hospitalization and ICU admission for all patients with ACP >30 days before death.
CONCLUSIONS: Patients with dementia and multimorbidity had the highest odds of high-intensity end-of-life care. For patients with dementia, heart failure, or pulmonary disease, ACP documentation >30 days before death was associated with lower likelihood of in-hospital death, hospitalization, and ICU use at end-of-life, regardless of multimorbidity.
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.
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: The mortality rate of pulmonary tuberculosis (TB) patients with respiratory failure remains high. This study aimed to identify factors contributing to death in these patients, and develop a mortality prediction model for pulmonary TB patients with respiratory failure.
METHODS: A retrospective study of patients admitted consecutively to the medical ICU of Beijing Chest Hospital, (Beijing, China), Chaoyang Fourth Hospital (Liaoning, China) and Hebi Third People's Hospital (Henan, China) from May 2018 to May 2019 was conducted. 153 patients with pulmonary TB accompanied by respiratory failure were enrolled. A multivariate analysis was performed to identify risk factors for death. A predictive fatality score was determined. The utility of the score for predicting death was evaluated using receiver operating characteristic (ROC) curve analysis.
RESULTS: The patients' median age was 57.82±19.42 years (17.0-87.0 years) and there were 106 males (69.28%). The mortality rate was 39.22% (60 of 153). Independent predictive factors of mortality included the PaO2 (hazard ratio 0.928, 95% CI: 0.882 - 0.976, P=0.004), Albumin (hazard ratio 0.881, 95% CI: 0.792- 0.980, P=0.019), Apache II score (hazard ratio 1.120, 95% CI: 1.017-1.234, P=0.022) and C-reactive protein (hazard ratio 1.012, 95% CI: 1.004-1.019, P=0.003). Establishing a logistic model of the death risk grade of pulmonary TB with respiratory failure was Y=1.710 - 0.068*PaO2-0.163* albumin + 0.215* Apache II +0.012* C-reactive protein. The value was Y=-0.494. If the Y value was greater than or equal to -0.494, the patients belonged to the deceased group, and if less than -0.494 the patients belonged to the survival group. AUC=0.818, The sensitivity was 83.3%; specificity was 73.1%.
CONCLUSIONS: Pulmonary TB patients with respiratory failure have a high mortality rate and poor prognosis, particularly those with high Apache II scores, high C-reactive protein levels, low PaO2 admission to ICU and low albumin level. The prediction model will help assess the risk of death in patients with TB and respiratory failure.
PURPOSE OF REVIEW: People living with serious mental illness are at a higher risk of developing respiratory problems that can lead to increased morbidity and early mortality. This review aimed to identify recent advances in care provision for people with respiratory problems and preexisting serious mental illness to ease symptom burden and reduce the risk of premature mortality.
RECENT FINDINGS: Intervention-based studies in this area are scarce. The evidence reviewed originated from observational studies. Concluding comments from the synthesis suggest there are specific needs for proactive screening of respiratory function as part of routine physical health checks across care settings for people living with serious mental illness, more stringent monitoring of comorbid chronic lung conditions and increased attention in reducing the frequency respiratory infections. Integrated services across care settings are needed to support people with serious mental illness to limit the impact of modifiable lifestyle factors known to be detrimental to respiratory health, such as smoking.
SUMMARY: Key priorities are identified to improve accessibility and inclusivity of respiratory care pathways for people living with serious mental illness to support early detection and proactive monitoring of respiratory problems to help reduce the risk of early mortality.
PURPOSE OF REVIEW: This review seeks to identify the current prevalence of potentially life-limiting respiratory conditions among those who have experienced homelessness, incarceration or had criminal justice involvement, and current developments in, and barriers to, delivery of supportive and palliative respiratory care to these populations. These structurally vulnerable populations are known to be growing, their health behaviours more risky, and their morbidity and mortality higher, with evidence of accelerated ageing.
RECENT FINDINGS: Most studies identified investigated prevalence of respiratory conditions, which were found to be high. In contrast, only one study directly explored supportive and palliative care (in a prison population) and none considered or addressed palliative and end-of-life needs of these populations, or mechanisms to address them. There was an absence of qualitative work and studies of the impact on, or role of, family, friends or informal networks.
SUMMARY: There is a need for evidence-based interventions to reduce the risk of communicable respiratory conditions and a greater understanding of disease trajectories and management for these vulnerable populations, including provision of accessible appropriate supportive, palliative and end-of-life care.
Objective: Malignant Pleural Mesothelioma (MPM) has a poor prognosis and high symptom burden. RESPECT-Meso was a multicenter randomized study examining the role of early specialist palliative care (SPC) on quality of life (QoL) with MPM. This is a post-hoc exploratory analysis of the symptom burden and unmet needs identified from RESPECT-Meso participants.
Methods: Exploratory analysis from 174 participants using the General Health Status (GHS) measure (from the EORTC QLQ-C30 QoL questionnaire) and 87 participants using validated assessment questionnaires in those randomized to SPC. Eligibility for the study included confirmed MPM with diagnosis <6 weeks prior, performance score (PS) 0 or 1, no significant physical or psychological comorbidity. Cox proportional hazards models were derived to examine for relationships with survival. Free text was assessed using content analysis, looking for common themes and words.
Results: Participants were predominantly male (79.9%), mean age 72.8 years, PS was 0 in 38%, 78% of MPM was epithelioid. At least 3 symptoms were reported in 69.8% of participants, including fatigue (81%), dyspnea (73.3%), pain (61.2%), weight loss (59.3%). Anxiety was reported by 54.7% of participants, 52.3% low mood and 48.8% anhedonia symptoms. After multivariable adjustment, only pain remained statistically significant with a hazard ratio (HR) 2.9 (95% CI 1.3-6.7; p = 0.01). For each 1 unit increase in GHS score, the HR for death was 0.987 (0.978-0.996; p = 0.006), indicating a worse reported QoL is related to shorter survival. Unmet needs were common: 25.9% wanted more information about their condition, 24.7% about their care and 21.2% about their treatment. 79.1% were concerned about the effect of their illness on family.
Conclusion: There is a high symptom burden in mesothelioma despite good baseline performance status. A worse QoL is associated with a worse survival. Unmet needs are common, perhaps highlighting a need for improved communication and information sharing.
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.
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.
BACKGROUND: Fibrotic interstitial lung diseases (f-ILDs) are often progressive and incurable. As patients experience significant symptoms and have a poor prognosis, early palliative care referral is recommended.
OBJECTIVE: To examine the care delivered to patients with f-ILD during the terminal hospital admission and the past 2 years of life.
METHODS: A retrospective audit was performed for consecutive patients who died from f-ILD at 2 Australian teaching hospitals between January 1, 2012, and December 31, 2016.
RESULTS: Of 67 patients, 44 (66%) had idiopathic pulmonary fibrosis. Median age was 78 years. Median respiratory function: forced expiratory volume in 1 second 69.0% predicted (interquartile range [IQR]: 58.0%-77.0%), forced vital capacity 64.0% predicted (IQR = 46.8%-74.3%), and diffusing capacity of carbon monoxide 36.0% predicted (IQR = 31.0%-44.0%). In the 2 years prior to the terminal admission, 38 (57%) patients reported severe breathlessness and 17 (25%) used opioids for symptom relief. Twenty-four (36%) patients received specialist palliative care (SPC) and 11 (16%) completed advance care planning. During the terminal admission, 10 (15%) patients were admitted directly under SPC. A further 33 (49%) patients were referred to SPC, on average 1 day prior to death. Sixty-three (94%) patients received opioids and 49 (73%) received benzodiazepines for symptom management. Median starting and final opioid doses were 10 and 23 mg oral morphine equivalent/24 hours, respectively. Opioids were commenced on average 2 (IQR 1-3) days prior to death.
CONCLUSIONS: Although most patients were identified as actively dying in the final admission, referral to SPC and use of palliative medications occurred late. Additionally, few patients accessed symptom palliation earlier in their illness.