Context: Uremic pruritus (UP) affects up to half of all patients with kidney disease and has been independently associated with poor patient outcomes. UP is a challenging symptom for clinicians to manage as there are no validated guidelines for its treatment.
Objectives: The study aimed to develop and validate an algorithm and patient information toolkit for the treatment of UP in patients with kidney disease.
Methods: The study involved a literature search and development of an initial draft algorithm, followed by content and face validation of this algorithm. Validation entailed three rounds of interviews with six nephrology clinicians per round. Participants assessed the relevance of each component of the algorithm and then rated a series of statements on a scale of 1-5 to assess face validity of the algorithm. After each round, the content validity index (CVI) of each algorithm component was calculated, and the algorithm was revised by the study team in response to findings. This process was followed by a second study that developed and validated a patient information pamphlet and video.
Results: Algorithm validation participants were affiliated with three institutions and included seven physicians, four registered nurses, three nurse practitioners, three pharmacists, and a dietician. The average CVI of the algorithm components across all three rounds was 0.89, with 0.80 commonly cited as the lower acceptable limit for content validation. More than 78% of participants rated each face validity statement as “Agree” or “Strongly Agree”. For the patient information tools, five clinicians and 15 patients were included in validation. The average CVI was 1.00 for both tools, and the average face validity was 92%.
Conclusion: A treatment algorithm and patient information toolkit for managing UP in patients with kidney disease were developed and validated through expert review. Further research will be conducted on implementation of the treatment algorithm and evaluating patient-reported outcomes.
Background: Advance directives towards end of life decisions are seldom used among Arabs.
Aims: This study aimed at investigating advance care preferences among a sample of Arab patients.
Method: This cross-sectional study was undertaken over the period March 2012-March 2013 on a sample of 300 patients with chronic illness in King Fahad National Guard Hospital, Riyadh, a major tertiary care hospital in Saudi Arabia.
Results: Mean age of patients in the study was 48.7 years (standard deviation 16.4). There were 104 patients on haemodialysis, 73 with advanced malignancy, 81 with chronic liver disease and 35 with chronic respiratory disease. More than 80% of the respondents felt that the physician should make the decision about cardiopulmonary resuscitation. Over 60% wished to remain at home when their condition deteriorated to impending death. There were no significant correlations between the patients' end of life decision preferences and religiosity, quality of life, disease duration, or other demographic characteristics.
Conclusion: Despite a significant lack of knowledge among our participants regarding resuscitation, a majority of patients with chronic illness were willing to discuss the options and were capable of making advance directive plans regarding their health status.
The mortality rate from chronic liver disease in the UK is rising rapidly, and patients with advanced disease have a symptom burden comparable to or higher than that experienced in other life-limiting illnesses. While evidence is limited, there is growing recognition that care of patients with advanced disease needs to improve. Many factors limit widespread provision of good palliative care to these patients, including the unpredictable trajectory of chronic liver disease, the misconception that palliative care and end-of-life care are synonymous, lack of confidence in prescribing and lack of time and resources. Healthcare professionals managing these patients need to develop the skills to ensure effective delivery of core palliative care, with referral to specialist palliative care services reserved for those with complex needs. Core palliative care is best delivered by the hepatology team in parallel with active disease management. This includes ensuring that discussions about disease trajectory and advance care planning occur alongside active management of disease complications. Liver disease is strongly associated with significant social, psychological and financial hardships for patients and their carers; strategies that involve the wider multidisciplinary team at an early stage in the disease trajectory help ensure proactive management of such issues. This review summarises the evidence supporting palliative care for patients with advanced chronic liver disease, presents examples of current best practice and provides pragmatic suggestions for how palliative and disease-modifying care can be run in parallel, such that patients do not miss opportunities for interventions that improve their quality of life.
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.
Objectives: An increasing number of children are living with complex chronic diseases (CCDs) due to medical advances. Despite a need for code status discussions (CSDs), there is great variability in the frequency and documentation of such conversations. The objective was to identify gaps in the documentation of CSDs within the electronic health record (EHR), focusing on patients with CCDs.
Methods: This was a retrospective review of all patients admitted from the emergency department of a tertiary care children's hospital in 2016. An EHR query using the Apache Hadoop cluster and manual review identified documentation of CSDs, including (1) code status orders, (2) advance directives, and (3) CSDs in provider notes. Patient complexity was stratified using the Pediatric Medical Complexity Algorithm 3.0. Comparative analysis was performed using chi-square, Kruskal–Wallis tests and multivariable logistic regression.
Results: There were 12,648 unique patients of whom 4157 (32.9%) had CCD. Only 209 (1.7%) patients had a code status documented, of whom 200 (95.7%) had CCD. Of 528 (4.2%) patients =18 years of age, 428 (81.1%) had CCD and only 65 (12.3%) had CSDs. Palliative care consultation increased odds of CSDs (OR: 21.4, 95% CI: 13.8–33.2, p < 0.0001), whereas African American race decreased odds of CSDs (OR: 0.42, 95% CI: 0.27–0.64, p < 0.0001).
Conclusions: Among admitted pediatric patients, most do not have documentation of CSDs, including those with CCD and patients =18 years of age. Improvements in both frequency and consistency of CSD documentation are needed to inform the family-centered care of patients living with CCDs.
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.
Objective: To develop a proposal for a 2-year mortality prognostic approach for patients with advanced chronic conditions based on the palliative care need (PCN) items of the
NECesidades PALiativas (NECPAL) CCOMS-ICO V.3.1 2017 tool.
Methods: A phase 1 study using three components based on the NECPAL items: (1) a rapid review of systematic reviews (SRs) on prognostic factors of mortality in patients with advanced chronic diseases and PCNs; (2) a clinician and statistician experts' consensus based on the Delphi technique on the selection of mortality prognostic factors; and (3) a panel meeting to discuss the findings of components (1) and (2).
Results: Twenty SRs were included in a rapid review, and 50% were considered of moderate quality. Despite methodological issues, nutritional and functional decline, severe and refractory dyspnoea, multimorbidity, use of resources and specific disease indicators were found to be potentially prognostic variables for mortality across four clinical groups and end-of-life (EoL) trajectories: cancer, dementia and neurologic diseases, chronic organ failure and frailty. Experts’ consensus added ‘needs’ identified by health professionals. However, clinicians were less able to discriminate which NECPAL items were more reliable for a ‘general’ model. A retrospective cohort study was designed to evaluate this proposal in phase 2.
Conclusions: We identified several parameters with prognostic value and linked them to the tool’s utility to timely identify PCNs of patients with advanced chronic conditions in all settings of care. Initial results show this is a clinical and feasible tool, that will help with clinical pragmatic decision-making and to define services.
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.
Purpose: Advance care planning is an important component of quality palliative care. In Asian countries, few randomized clinical trials have been reported. This pilot randomized-controlled trial examined the effects of brief nurse intervention with visual materials on the goal-of-care preference, cardiopulmonary resuscitation (CPR) preference, and designation of a health care proxy.
Methods: This randomized clinical trial was performed from January to February 2018 on elderly Japanese patients with chronic disease. The patients were randomly assigned to a control group (brief nurse intervention using verbal descriptions) or intervention group (using visual materials). The primary endpoint was goal-of-care preference, and secondary outcomes included the following: (1) CPR preference, (2) presence of a designated health care proxy, (3) knowledge of CPR, and (4) readiness for advance care planning. Outcome measures were obtained at baseline and just after completion of the intervention.
Results: A total of 220 patients were enrolled (117 in the intervention group and 103 in the control group). All patients completed post-intervention measurement. There was no significant difference between the groups in any of the outcome measures, while <5% of the participants wanted life-prolonging care as the goal of care at the baseline. Before/after comparisons indicated that, in both groups, the number of participants who designated a health care proxy significantly increased (29% to 65% vs. 22% to 52%, respectively; p < 0.001 each); and the knowledge and readiness scores significantly increased. Moreover, there was a significant increase in the number of patients who did not want CPR (55% to 67% with a terminal condition, p = 0.003; 67% to 80% with a bedridden condition, p < 0.001) in the intervention group.
Conclusions: Brief nurse intervention increased documentation of a patient-designated health care proxy and improved the knowledge of CPR and patient readiness. Visual materials might help patients to imagine the actual situation regarding CPR.
Background: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child’s chronic life-threatening illness, there is no such study within the Asian context.
Methods: To bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018.
Results: Data analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants’ lived experience of their child’s chronic life-threatening illness and death, starting from the diagnosis of their child’s chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child’s death and the losses which accompanied the death (Theme 3) and participants’ experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or ‘rituals’ that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7).
Conclusion: These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.
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.
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.
The aim of the study is to evaluate the intensity of symptoms, and any treatment and therapeutic procedures received by advanced chronic patients in nursing homes. A multi-centre prospective study was conducted in six nursing homes for five months. A nurse trainer selected palliative care patients from whom the sample was randomly selected for inclusion. The Edmonton Symptoms Assessment Scale, therapeutic procedures, and treatment were evaluated. Parametric and non-parametric tests were used to evaluate month-to-month differences and differences between those who died and those who did not. A total of 107 residents were evaluated. At the end of the follow-up, 39 had (34.6%) died. All symptoms (p < 0.050) increased in intensity in the last week of life. Symptoms were more intense in those who had died at follow-up (p < 0.05). The use of aerosol sprays (p = 0.008), oxygen therapy (p < 0.001), opioids (p < 0.001), antibiotics (p = 0.004), and bronchodilators (p = 0.003) increased in the last week of life. Peripheral venous catheters (p = 0.022), corticoids (p = 0.007), antiemetics (p < 0.001), and antidepressants (p < 0.05) were used more in the patients who died. In conclusion, the use of therapeutic procedures (such as urinary catheters, peripheral venous catheter placement, and enteral feeding) and drugs (such as antibiotics, anxiolytics, and new antidepressant prescriptions) should be carefully considered in this clinical setting.
In this issue of JAMA, Lee and colleagues examine the association between Physician Orders for Life-Sustaining Treatment (POLST), which involve portable medical orders that document treatment limitations for out-of-hospital emergency care and for limiting overtreatment at the end of life. The authors studied adults with chronic life-limiting illnesses who were hospitalized within the last 6 months of life and who had completed a POLST before their last inpatient admission. Among 1818 patients enrolled, 656 (36%) had POLST orders for “full treatment” and 1162 had orders for either “limited additional interventions” (761 [42%]) or “comfort measures only” (401 [22%]). Among the combined latter 2 groups, 472 (41%) were admitted to the intensive care unit (ICU), 436 (38%) received POLST-discordant intensive care, and 204 (18%) received POLST-discordant life-sustaining treatments, defined as mechanical ventilation, vasoactive infusions, new renal replacement therapy, or cardiopulmonary resuscitation. Patients with cancer or dementia were less likely to receive POLST-discordant intensive care, whereas patients hospitalized for traumatic injuries were more likely to receive POLST-discordant intensive care. These results are sobering.
[Début de l'article]
Importance: Patients with chronic illness frequently use Physician Orders for Life-Sustaining Treatment (POLST) to document treatment limitations.
Objectives: To evaluate the association between POLST order for medical interventions and intensive care unit (ICU) admission for patients hospitalized near the end of life.
Design, Setting, and Participants: Retrospective cohort study of patients with POLSTs and with chronic illness who died between January 1, 2010, and December 31, 2017, and were hospitalized 6 months or less before death in a 2-hospital academic health care system.
Exposures: POLST order for medical interventions (“comfort measures only” vs “limited additional interventions” vs “full treatment”), age, race/ethnicity, education, days from POLST completion to admission, histories of cancer or dementia, and admission for traumatic injury.
Main Outcomes and Measures: The primary outcome was the association between POLST order and ICU admission during the last hospitalization of life; the secondary outcome was receipt of a composite of 4 life-sustaining treatments: mechanical ventilation, vasopressors, dialysis, and cardiopulmonary resuscitation. For evaluating factors associated with POLST-discordant care, the outcome was ICU admission contrary to POLST order for medical interventions during the last hospitalization of life.
Results: Among 1818 decedents (mean age, 70.8 [SD, 14.7] years; 41% women), 401 (22%) had POLST orders for comfort measures only, 761 (42%) had orders for limited additional interventions, and 656 (36%) had orders for full treatment. ICU admissions occurred in 31% (95% CI, 26%-35%) of patients with comfort-only orders, 46% (95% CI, 42%-49%) with limited-interventions orders, and 62% (95% CI, 58%-66%) with full-treatment orders. One or more life-sustaining treatments were delivered to 14% (95% CI, 11%-17%) of patients with comfort-only orders and to 20% (95% CI, 17%-23%) of patients with limited-interventions orders. Compared with patients with full-treatment POLSTs, those with comfort-only and limited-interventions orders were significantly less likely to receive ICU admission (comfort only: 123/401 [31%] vs 406/656 [62%], aRR, 0.53 [95% CI, 0.45-0.62]; limited interventions: 349/761 [46%] vs 406/656 [62%], aRR, 0.79 [95% CI, 0.71-0.87]). Across patients with comfort-only and limited-interventions POLSTs, 38% (95% CI, 35%-40%) received POLST-discordant care. Patients with cancer were significantly less likely to receive POLST-discordant care than those without cancer (comfort only: 41/181 [23%] vs 80/220 [36%], aRR, 0.60 [95% CI, 0.43-0.85]; limited interventions: 100/321 [31%] vs 215/440 [49%], aRR, 0.63 [95% CI, 0.51-0.78]). Patients with dementia and comfort-only orders were significantly less likely to receive POLST-discordant care than those without dementia (23/111 [21%] vs 98/290 [34%], aRR, 0.44 [95% CI, 0.29-0.67]). Patients admitted for traumatic injury were significantly more likely to receive POLST-discordant care (comfort only: 29/64 [45%] vs 92/337 [27%], aRR, 1.52 [95% CI, 1.08-2.14]; limited interventions: 51/91 [56%] vs 264/670 [39%], aRR, 1.36 [95% CI, 1.09-1.68]). In patients with limited-interventions orders, older age was significantly associated with less POLST-discordant care (aRR, 0.93 per 10 years [95% CI, 0.88-1.00]).
Conclusions and Relevance: Among patients with POLSTs and with chronic life-limiting illness who were hospitalized within 6 months of death, treatment-limiting POLSTs were significantly associated with lower rates of ICU admission compared with full-treatment POLSTs. However, 38% of patients with treatment-limiting POLSTs received intensive care that was potentially discordant with their POLST.
Background: End-of-life spending and health care utilization in older adults with COPD have not been previously described.
Methods: We examined data from Medicare beneficiaries =65 years with COPD who died between 2013-2014. End-of-life measures were retrospectively reviewed for two years prior to death. Hospital referral regions (HRRs) were categorized into quintiles of age-sex-race-adjusted overall spending during the last two years of life. We examined geographic and spending quintile variation in spending and health care utilization across the continuum.
Results: We investigated data from 146,240 decedents with COPD from 306 HRRs. Age-sex-race-adjusted overall spending per-decedent during the last two years of life varied significantly nationwide ($61,271±$11,639 per decedent; range: $48,288±$3,665 to $79,453±$9,242). Inpatient care accounted for 40.2% of spending ($24,626±$6,192 per decedent). Overall, 82%±4% of decedents were admitted to the hospital for 13.7±3.1 days and 55%±11% to an intensive care unit for 5.4±2.5 days. Compared to HRRs in the lowest spending quintile, HRRs in the highest spending quintile had 1.5-fold longer hospital length of stay. Skilled nursing facilities accounted for 11.6% of spending ($7101±$2403 per decedent) and were used by 38%±7% of decedents for 18.7±4.9 days. Hospice accounted for 10.3% of spending ($6,307±$2,201 per decedent) and was used by 47%±9% of decedents for 39.7±14.8 days. Significant geographic variation in hospice use existed nationwide.
Conclusions: End-of-life spending and healthcare utilization in older adults with COPD varied substantially nationwide. Decedents with COPD frequently used acute and post-acute care near the end of life. Hospice use was higher than expected, with significant geographic disparities.
Chronic obstructive pulmonary disease (COPD) is common chronic respiratory disorder, predominantly caused by exposure to cigarette smoke or biomass fuels, and it usually affects older adults. Dyspnea in COPD that is unresponsive to traditional management is a challenging disease complication for both the patient and the health care professional. Off-label use of opioids has been advocated as a pharmacotherapy strategy for refractory dyspnea. However, negative respiratory outcomes are a potential concern with opioids drugs, especially among individuals with COPD. In this review, randomized controlled trials evaluating opioid efficacy among individuals with COPD are reviewed and critically analyzed, and data from observational drug safety studies is also presented. In summary, the evidence in support of using opioids for refractory dyspnea in COPD is minimal and weak, and there is mounting data demonstrating that opioids are associated with increased respiratory-related morbidity and mortality in this population. Therefore, current evidence does not support the broad application of opioids for refractory dyspnea among individuals with COPD. However, there may be subsets of individuals that experience modest improvement in dyspnea with opioids, and better understanding predictors and mechanisms of such opioid responsiveness should be a focus of future research endeavours.