COPD is a significant health issue around the world. It is ultimately a fatal disease. Patients are under-referred to palliative care. Palliative care can improve breathlessness and provide other psychosocial interventions that can improve quality of life.
BACKGROUND: The provision of palliative care for severe chronic obstructive pulmonary disease (COPD) remains low resulting in unmet needs in patients and carers.
RESEARCH QUESTION: This study aimed to 1) explore palliative care needs of patients living with severe COPD and their caregivers, 2) understand views of accessing and providing palliative care and factors influencing these experiences, and 3) explore to what extent palliative care and COPD services have been integrated.
STUDY DESIGN AND METHODS: A multicentre qualitative study was undertaken in COPD services and specialist palliative care in the UK, involving patients with severe COPD, their carers and health professionals. Data were collected using semi-structured interviews and analysed using framework analysis. Themes were integrated using the constant comparison process, enabling systematic data synthesis.
RESULTS: Four themes were generated from interviews with 20 patients, six carers and 25 health professionals: management of exacerbations, palliative care needs, access to palliative care and pathways, and integration of palliative care support. Uncertainty and fear were common in patients and carers, with identified needs for reassurance, rapid medical access, home care and finance advice. Timely palliative care was perceived as important by health professionals. Palliative care was integrated into COPD services although models of working varied across regions. Reliable screening tools and needs assessment, embedded psychological care and enhanced training in palliative care and communication skills were perceived important by health professionals for timely palliative care referrals and optimised management.
INTERPRETATION: Palliative care is increasingly being implemented for non malignant diseases including COPD throughout the UK although models of working vary. A theoretical model is developed to illustrate the concept and pathway of the integration of palliative care support. A standardised screening and needs assessment tool is required to improve timely palliative care and address the significant needs of this population.
BACKGROUND: Patients with chronic obstructive pulmonary disease (COPD) often receive burdensome care at end-of-life (EOL) and infrequently complete advance care planning (ACP). The surprise question (SQ) is a prognostic tool that may facilitate ACP.
OBJECTIVE: To assess how well the SQ predicts mortality and prompts ACP for COPD patients.
DESIGN: Retrospective cohort study.
SUBJECTS: Patients admitted to the hospital for an acute exacerbation of COPD between July 2015 and September 2018.
MAIN MEASURES: Emergency department (ED) and inpatient clinicians answered, "Would you be surprised if this patient died in the next 30 days (ED)/one year (inpatient)?" The primary outcome measure was the accuracy of the SQ in predicting 30-day and 1-year mortality. The secondary outcome was the correlation between SQ and ACP (palliative care consultation, documented goals-of-care conversation, change in code status, or completion of ACP document).
KEY RESULTS: The 30-day SQ had a high specificity but low sensitivity for predicting 30-day mortality: sensitivity 12%, specificity 95%, PPV 11%, and NPV 96%. The 1-year SQ demonstrated better accuracy for predicting 1-year mortality: sensitivity 47%, specificity 75%, PPV 35%, and NPV 83%. After multivariable adjustment for age, sex, and prior 6-month admissions, 1-year SQ+ responses were associated with greater odds of 1-year mortality (OR 2.38, 95% CI 1.39-4.08) versus SQ-. One-year SQ+ patients were more likely to have a goals-of-care conversation (25% vs. 11%, p < 0.01) and complete an advance directive or POLST (46% vs. 23%, p < 0.01). After multivariable adjustment, SQ+ responses to the 1-year SQ were associated with greater odds of ACP receipt (OR 2.67, 95% CI 1.64-4.36).
CONCLUSIONS: The 1-year surprise question may be an effective component of prognostication and advance care planning for COPD patients in the inpatient setting.
OBJECTIVES: This study aimed to describe and compare symptoms, care needs and types of diagnoses in hospitalised patients with palliative care needs in Spain and Sweden.
METHODS: A cross-sectional, population-based study was carried out at two hospitals in both Spain and Sweden. Using a questionnaire, we performed 154 one-day inventories (n=4213) in Spain and 139 in Sweden (n=3356) to register symptoms, care needs and diagnoses. Descriptive analyses were used.
RESULTS: The proportion of patients with care needs in the two countries differed (Spain 7.7% vs Sweden 12.4%, p<0.001); however, the percentage of patients with cancer and non-cancer patients was similar. The most prevalent symptoms in cancer and non-cancer patients in both countries were deterioration, pain, fatigue and infection. The most common cancer diagnosis in both countries was lung cancer, although it was more common in Spain (p<0.01), whereas prostate cancer was more common among Swedish men (p<0.001). Congestive heart failure (p<0.001) was a predominant non-cancer diagnosis in Sweden, whereas in Spain, the most frequent diagnosis was dementia (p<0.001). Chronic obstructive pulmonary disease was common in both countries, although its frequency was higher in Spain (p<0.05). In total, patients with cancer had higher frequencies of pain (p<0.001) and nausea (p<0.001), whereas non-cancer patients had higher frequencies of deterioration (p<0.001) and infections (p<0.01).
CONCLUSIONS: The similarities in symptoms among the patients indicate that the main focus in care should be on patient care needs rather than diagnoses. Integrating palliative care in hospitals and increasing healthcare professional competency can result in providing optimal palliative care.
BACKGROUND: Elderly patients frequently experience deteriorating health after critical illness, which may threaten their independence and predispose them to unplanned hospital readmissions and premature death.
OBJECTIVES: To evaluate the operational feasibility of a 90-day home-based palliative care intervention in multimorbid elderly Veteran survivors of critical illness.
METHODS: A multidisciplinary home-based palliative care intervention was provided for multimorbid elderly veterans who were discharged home after admission to the intensive care unit for sepsis, pneumonia, heart failure, or exacerbation of chronic obstructive lung disease.
RESULTS: Fifteen patients enrolled in the study, 11 (73%) of whom completed all visits; thus the prespecified goal of >70% completion was met. Median (interquartile range [IQR]) age of the patients was 76 (69-87) years. Participants had a median (IQR) of 8 (7-8) concurrent chronic health conditions, were moderately debilitated at baseline, and were all male. The median (IQR) time to the first study visit was 8 (5-12) days. Patients had a median (IQR) of 8 (5-11) in-home visits and 6 (3-7) telephone encounters during the 90-day study period. Nurses spent a median (IQR) cumulative time of 330 (240-585) minutes on home visits and 30 (10-70) minutes on telephone visits. The median (IQR) time per home provider visit was 90 (75-90) minutes. We estimated the median (IQR) cost per patient to be $2321 ($1901-$3331).
CONCLUSION: A comprehensive home-based palliative care intervention is operationally feasible in elderly multi-morbid survivors of critical illness and may result in improved physical functioning and quality of life and fewer unplanned emergency department visits.
Background: Although guidelines recommend palliative care for patients with chronic obstructive pulmonary disease, there is little evidence for the effectiveness of palliative care interventions for this patient group specifically.
Aim: To describe the characteristics of palliative care interventions for patients with COPD and their informal caregivers and review the available evidence on effectiveness and implementation outcomes.
Design: Systematic review and narrative synthesis (PROSPERO CRD42017079962).
Data sources: Seven databases were searched for articles reporting on multi-component palliative care interventions for study populations containing >= 30% patients with COPD. Quantitative as well as qualitative and mixed-method studies were included. Intervention characteristics, effect outcomes, implementation outcomes and barriers and facilitators for successful implementation were extracted and synthesized qualitatively.
Results: Thirty-one articles reporting on twenty unique interventions were included. Only four interventions (20%) were evaluated in an adequately powered controlled trial. Most interventions comprised of longitudinal palliative care, including care coordination and comprehensive needs assessments. Results on effectiveness were mixed and inconclusive. The feasibility level varied and was context-dependent. Acceptability of the interventions was high; having someone to call for support and education about breathlessness were most valued characteristics. Most frequently named barriers were uncertainty about the timing of referral due to the unpredictable disease trajectory (referrers), time availability (providers) and accessibility (patients).
Conclusion: Little high-quality evidence is yet available on the effectiveness and implementation of palliative care interventions for patients with COPD. There is a need for well-conducted effectiveness studies and adequate process evaluations using standardized methodologies to create higher-level evidence and inform successful implementation.
OBJECTIVES: Although general practice is an ideal setting for ensuring timely initiation of advance care planning (ACP) in people with chronic life-limiting illness, evidence on the effectiveness of ACP in general practice and how it can be implemented is lacking. This study aims to evaluate feasibility and acceptability of study procedures and intervention components of an intervention to facilitate the initiation of ACP in general practice for people with chronic life-limiting illness.
METHODS: Pilot cluster-randomised controlled trial testing a complex ACP intervention in general practice versus usual care (ClinicalTrials.gov: NCT02775032). We used a mixed methods approach using detailed documentation of the recruitment process, questionnaires and semi-structured interviews.
RESULTS: A total of 25 general practitioners (GPs) and 38 patients were enrolled in the study. The intervention was acceptable to GPs and patients, with GPs valuing the interactive training and patients finding ACP conversations useful. However, we found a number of challenges regarding feasibility of recruitment procedures, such GP as recruitment proceeding more slowly than anticipated as well as difficulty applying the inclusion criteria for patients. Some GPs found initiating ACP conversations difficult. The content of the patient booklet was determined to potentially be too complex for patients with a lower health literacy.
CONCLUSION: Although the intervention was well-accepted by GPs and patients, we identified critical points for improvement with regard to the study procedures as well as potential improvements of the intervention components. When these points are addressed, the intervention can proceed to a large-scale, phase III trial to test its effectiveness.
Background: Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients’ medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire for proxy informants was developed in order to retrospectively assess patient-centeredness in care during the whole LYOL. This study aimed to evaluate the feasibility and validity of an adapted version of the German Patient Assessment of Chronic Illness Care (PACIC) for surveying bereaved persons in order to assess PCC during the decedents’ LYOL.
Methods: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent’s LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach’s alpha.
Results: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed =5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item” Given a copy of their treatment plan” highest (mean 3.96), whereas “encouragement to get to a specific group or class to cope with the condition” (mean 1.74) was rated lowest. Cronbach’s alpha was 0.84. A unidimensional structure of the questionnaire was found (Kaiser-Meyer-Olkin 0.86, Bartlett’s test for sphericity p < 0.001), with items’ factor loadings ranging from 0.46 to 0.82.
Conclusions: The nine-item questionnaire can be used as efficient tool for assessing PCC during the LYOL retrospectively and by proxies.
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.
AIMS: This study explored perceptions on a good-life, good-death, and advance care planning in Koreans with non-cancerous chronic diseases with the goal to develop a culture-specific advance care planning intervention in this population.
DESIGN: A qualitative descriptive design was used.
METHODS: Data collections were conducted between September 2017 - June 2018. Twenty-nine patients aged 41-82 years (85.8% men) participated in the interviews lasting 40-60 min. The verbatim transcriptions of the semi-structured interview data were analysed using conventional content analysis.
RESULTS: Good-life was described as 'present with physical and financial independence,' 'not burdensome to the family,' 'completed life responsibility', and 'helping others.' Some participants described good-death as 'prepared death' while others considered it as 'sudden death during sleep.' All participants wanted to have a painless death and not burden the family. Advance care planning was a new concept to many participants. It was likened to 'insurance.' Some participants believed that decision-making on life-sustaining treatment should be done by their family, not themselves, because of economic or emotional distress. Some participants wanted to discuss medical and non-medical care services to reduce the burden on self and family.
CONCLUSION: Family is key when it comes to the meaning of good-life and good-death. Cultural adaptation is necessary to meet the advance care planning needs of Koreans with non-cancerous chronic diseases.
IMPACT: Successfully implementing advance care planning in Koreans with non-cancerous chronic diseases depends on how it is adapted to the disease-specific characteristics compared with cancer, and the cultural norms and social context. Nurses need to be prepared to offer advance care planning to persons with non-cancerous chronic diseases based on a keen sense of and empathetic cultural competence.
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.
Importance: The evidence for palliative care exists predominantly for patients with cancer. The effect of palliative care on important end-of-life outcomes in patients with noncancer illness is unclear.
Objective: To measure the association between palliative care and acute health care use, quality of life (QOL), and symptom burden in adults with chronic noncancer illnesses.
Data Sources: MEDLINE, Embase, CINAHL, PsycINFO, and PubMed from inception to April 18, 2020.
Study Selection: Randomized clinical trials of palliative care interventions in adults with chronic noncancer illness. Studies involving at least 50% of patients with cancer were excluded.
Data Extraction and Synthesis: Two reviewers independently screened, selected, and extracted data from studies. Narrative synthesis was conducted for all trials. All outcomes were analyzed using random-effects meta-analysis.
Main Outcomes and Measures: Acute health care use (hospitalizations and emergency department use), disease-generic and disease-specific quality of life (QOL), and symptoms, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-Palliative Care scale (range, 0 [worst] to 184 [best]; minimal clinically important difference, 9 points) and symptoms translated to units of the Edmonton Symptom Assessment Scale global distress score (range, 0 [best] to 90 [worst]; minimal clinically important difference, 5.7 points).
Results: Twenty-eight trials provided data on 13 664 patients (mean age, 74 years; 46% were women). Ten trials were of heart failure (n = 4068 patients), 11 of mixed disease (n = 8119), 4 of dementia (n = 1036), and 3 of chronic obstructive pulmonary disease (n = 441). Palliative care, compared with usual care, was statistically significantly associated with less emergency department use (9 trials [n = 2712]; 20% vs 24%; odds ratio, 0.82 [95% CI, 0.68-1.00]; I2 = 3%), less hospitalization (14 trials [n = 3706]; 38% vs 42%; odds ratio, 0.80 [95% CI, 0.65-0.99]; I2 = 41%), and modestly lower symptom burden (11 trials [n = 2598]; pooled standardized mean difference (SMD), -0.12; [95% CI, -0.20 to -0.03]; I2 = 0%; Edmonton Symptom Assessment Scale score mean difference, -1.6 [95% CI, -2.6 to -0.4]). Palliative care was not significantly associated with disease-generic QOL (6 trials [n = 1334]; SMD, 0.18 [95% CI, -0.24 to 0.61]; I2 = 87%; Functional Assessment of Chronic Illness Therapy-Palliative Care score mean difference, 4.7 [95% CI, -6.3 to 15.9]) or disease-specific measures of QOL (11 trials [n = 2204]; SMD, 0.07 [95% CI, -0.09 to 0.23]; I2 = 68%).
Conclusions and Relevance: In this systematic review and meta-analysis of randomized clinical trials of patients with primarily noncancer illness, palliative care, compared with usual care, was statistically significantly associated with less acute health care use and modestly lower symptom burden, but there was no significant difference in quality of life. Analyses for some outcomes were based predominantly on studies of patients with heart failure, which may limit generalizability to other chronic illnesses.
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.
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.