BACKGROUND: While early-integrated palliative home care (PHC) is believed to be beneficial for COPD patients, trials testing this hypothesis are rare and show inconclusive results.
AIM: To test feasibility, acceptability and preliminary effectiveness of early-integrated PHC for end-stage COPD.
METHOD: Testing a six-month early-integrated PHC pilot RCT given by PHC nurses for end-stage COPD with five components: (1) pre-inclusion COPD support training for PHC nurses; (2) monthly PHC visits; (3) leaflets on coping mechanisms; (4) a protocol on symptom management and support, a care and action plan; (5) integration of PHC and usual care through reporting and communication mechanisms. Patient-reported outcomes were assessed six-weekly. Participants and healthcare professionals involved were interviewed.
RESULTS: Of 70 eligible patients, 39 (56%) participated (20:19 intervention-control) and 64% completed the trial. A patient received on average 3.4 PHC visits, mainly for disease insight, symptom management and care planning. Nurses distributed all reports but hardly connected with health professionals except general practitioners (GPs); 8/10 interviewed patients referred to the psychosocial support, breathing exercises and care decisions as helpful. Some GPs criticised PHC being given too early but pulmonologists and PHC nurses did not. Effectiveness analysis showed no overall intervention effect for the outcomes, but between baseline and week 24 fewer hospitalisations in the control group (p=0.03) and a trend of higher perceived quality of care in the intervention group (p=0.06) was found. A clinically relevant difference was observed at week 24 for health-related quality of life in favour of the control group.
CONCLUSION: Our intervention on early-integrated PHC for end-stage COPD is feasible and accepted but did not yield the anticipated preliminary effectiveness. Before moving to a Phase III-trial, enhanced coordination of care, more GP involvement, more intensive training for PHC nurses in COPD support and revision of the trial design, e.g. of targeted outcomes in line with individual patient goals and care preferences should be improved.
Background: One widely accepted approach to identify children with life-limiting health problems is the complex chronic conditions (CCCs) classification system. Although considered the “gold standard” for classifying children with serious illness, little is known about its performance, especially among infants.
Objective/Hypothesis: This research examined the prevalence of CCCs and the infant characteristics related to a CCC classification.
Methods: Multivariate regression analysis was conducted with 2012 Kids’ Inpatient Database, Healthcare Cost and Utilization Project data files, using a national sample of infant decedents less than 1 year.
Results: Our findings showed that 40% of the infants were classified with a CCC. African Americans were negatively associated with a CCC classification (adjusted odds ratio [aOR] = 0.63; 95% confidence interval [CI] = 0.543-0.731). When infants had other insurance coverage, they were less likely (aOR = 0.63; 95% CI = 0.537-0.748) to have a CCC classification. Infants who resided in nonurban areas (aOR = 1.21; 95% CI =1.034-1.415) and had comorbidities (aOR = 38.19; 95% CI = 33.12-44.04) had greater odds of having a CCC classification.
Conclusions: The findings suggested that the infants are not commonly classified with a CCC and highlighted the significant variation in race with African American infants exhibiting different CCC classifications than Caucasian infants. Given the importance of reducing disparities in palliative care, critical attention to using CCC classifications in research is warranted.
Introduction: End-stage chronic obstructive pulmonary disease (COPD) patients with acute respiratory failure are often treated by representatives from different medical specialties. This study investigates if the choice of treatment is influenced by the medical specialty.
Methods: An online cross-sectional survey among four Austrian medical societies was performed, accompanied by a case vignette of a geriatric end-stage COPD patient with acute respiratory failure. Respondents had to choose between noninvasive ventilation (NIV), a conservative treatment attempt (without NIV) and a palliative approach. Ethical considerations and their impact on decision making were also assessed.
Results: Responses of 162 physicians (67 from intensive care units (ICUs), 51 from pulmonology or internal departments and 44 from geriatric or palliative care) were included. The decision for NIV (instead of a conservative or palliative approach) was associated with working in an ICU (OR 14.9, 95% CI 1.87-118.8) and in a pulmonology or internal department (OR 9.4, 95% CI 1.14-78.42) compared with working in geriatric or palliative care (Model 1). The decision for palliative care was negatively associated with working in a pulmonology or internal department (OR 0.16, 95% CI 0.05-0.47) and (nonsignificantly) in an ICU (OR 0.41, 95% CI 0.15-1.12) (Model 2).
Conclusions: Department association was shown to be an independent predictor for treatment decisions in end-stage COPD with acute respiratory failure. Further research on these differences and influential factors is necessary.
Purpose: Among individuals with COPD and/or lung cancer, to describe end-of-life health service utilization, costs, and place of death; to identify predictors of home palliative care use, and to assess benefits associated with palliative care use.
Patients and methods: We conducted a retrospective population-based study using provincial linked health administrative data (Ontario, Canada) between 2010 and 2015. We examined health care use in the last 90 days of life in adults 35 years and older with physician-diagnosed COPD and/or lung cancer identified using a validated algorithm and the Ontario Cancer Registry, respectively. Four mutually exclusive groups were considered: (i) COPD only, (ii) lung cancer only, (iii) COPD and lung cancer, and (iv) neither COPD nor lung cancer. Multivariable generalized linear models were employed.
Results: Of 445,488 eligible deaths, 34% had COPD only, 4% had lung cancer only, 5% had both and 57% had neither. Individuals with COPD only received less palliative care (20% vs 57%) than those with lung cancer only. After adjustment, people with lung cancer only were far more likely to receive palliative care (OR=4.22, 4.08-4.37) compared to those with neither diagnosis, while individuals with COPD only were less likely to receive palliative care (OR=0.82, 0.81-0.84). Home palliative care use was associated with reduced death and fewer days in acute care, and less cost, regardless of the diagnosis.
Conclusion: Although individuals with lung cancer were much more likely to receive palliative care than those with COPD, both populations were underserviced. Results suggest greater involvement of palliative care may improve the dying experience of these populations and reduce costs.
Les maladies inflammatoires chroniques intestinales (MICI) sont
encore peu connues du grand public. Invalidantes, elles touchent
essentiellement le tube digestif et se présentent sous deux pathologies : la maladie de Crohn et la rectocolite hémorragique.
Tout d’abord, je souhaite remercier l’ASP fondatrice de son invitation
car il est important de faire témoigner les malades.
Je suis atteint d’une rectocolite hémorragique depuis l’âge de 14 ans
et ai ensuite dû faire face à trois cancers : côlon, rectum, vésicule
biliaire. J’ai été "iléostomisé" et remis en continuité un an après
et « urostomisé » avec deux sondes bilatérales.
J’ai subi des radiothérapies, chimiothérapies. Je vais vous décrire
comment j’ai vécu ma maladie et comment je suis devenu patient
CONTEXT: Nearly 70% of do-not-resuscitate (DNR) directives for chronic obstructive pulmonary disease (COPD) patients are established during their terminal hospitalization. Whether patient use of end-of-life resources differs between early and late establishment of a DNR is unknown.
OBJECTIVES: To compare end-of-life resource use between patients according to DNR directive status: no DNR, early DNR (EDNR) (established before terminal hospitalization), and late DNR (LDNR) (established during terminal hospitalization).
METHODS: Electronic health records from all COPD decedents in a teaching hospital in Taiwan were analyzed retrospectively with respect to medical resource use during the last year of life and medical expenditures during the last hospitalization. Multivariate linear regression analysis was used to determine independent predictors of cost.
RESULTS: Of the 361 COPD patients enrolled, 318 (88.1%) died with a DNR directive, 31.4% of which were EDNR. COPD decedents with EDNR were less likely to be admitted to intensive care units (12.0 %, 55.5%, and 60.5% for EDNR, LDNR, and no DNR, respectively), had lower total medical expenditures, and were less likely to undergo invasive mechanical ventilator support during their terminal hospitalization. The average total medical cost during the last hospitalization was nearly 2-fold greater for LDNR than for EDNR decedents. Multivariate linear regression analysis revealed that nearly 60% of medical expenses incurred were significantly attributable to no EDNR, younger age, longer length of hospital stay, and more comorbidities.
CONCLUSION: Although 88% of COPD decedents died with a DNR directive, 70% of these directives were established late. LDNR results in lower quality of care and greater intensive care resource use in end-of-life COPD patients.
This dissertation provided population-based insights in the use and timing of palliative home care for end-stage COPD in Belgium and tested the applicability of a model of early-integrated palliative home care for end-stage COPD in the Flemish health care setting.
[Extrait résumé éditeur]
BACKGROUND: Patients with advanced chronic obstructive pulmonary disease (COPD) have a significant symptom burden despite maximal medical therapy, yet few are referred for concomitant palliative care.
OBJECTIVE: To evaluate the utilization and impact of palliative care on the location of death and to identify clinical variables associated with palliative care contact.
DESIGN: Retrospective chart review from 2010 to 2016 at the VA Western New York Healthcare System using ICD-9/10 diagnosis of COPD. Palliative care contact was identified by Z51.5 or stop code 353.
RESULTS: Only 0.5% to 2% of living patients received palliative care, increasing abruptly at death (6%). Lower diffusion capacity for carbon monoxide (DLCO) (greater emphysema) was associated with palliative care contact, independent of comorbid disease burden or age. Initial outpatient contact was associated with a longer duration of palliative care (P = .003) and death in a home-like setting. Outpatient palliative care was associated with more severe airflow obstruction (forced expiratory volume in 1 second, percent predicted [FEV1%]), whereas greater disease exacerbation frequency was associated with inpatient contact. COPD patients not referred to palliative care had a greater comorbid disease burden, similar FEV1%, fewer disease exacerbations, and a greater DLCO.
CONCLUSION: Few patients with COPD received palliative care, similar to national trends. Initial outpatient palliative contact had the longest duration of care and death in the preferred home environment. The extent of emphysema (DLCO reduction) and more frequent disease exacerbations identified in patients were more likely to receive palliative care. Our study begins to define the benefits of palliative care in advanced COPD and confirms underutilization in the years before death, where a prolonged impact on the quality of life may be realized.
AIMS AND OBJECTIVES: To uncover what is known about nurse-led models or interventions that have integrated palliative care into the care of patients with Chronic Obstructive Pulmonary Disease (COPD).
BACKGROUND: COPD is a highly symptomatic, incurable disease characterised by chronic symptoms that without appropriate palliation, can lead to unnecessary suffering for patients and their caregivers. While palliative care practices can relieve suffering and improve quality of life, most palliative models of care remain cancer-focused. New models, including nurse-led care that integrate palliative care for patients with COPD could address patient suffering and therefore need to be explored.
METHOD: A mixed-studies integrative review was undertaken. Seven databases were searched for articles published between 2008 and 2018. The PRISMA framework was applied to the search and six studies met the review eligibility criteria. Content analysis of the articles was undertaken and data were compared, looking for different nurse-led models and outcomes related to palliative care in COPD.
RESULTS: Nurse-led, integrated palliative care models for patients with COPD are rare and just four of the six articles found in this review had published results. Advance Care Planning was found to be the most common focus for nurse-led interventions in COPD and in all cases, results demonstrated an improvement in end of life discussions and completion of advance care directives. Of the reviewed articles, none used a qualitative framework to explore nurse-led models that integrated palliative care in COPD.
CONCLUSION: While nurse-led Advance Care Planning was one type of palliative care practice associated with positive patient outcomes, there is a need for deeper exploration of nurse-led models that holistically address the bio-psycho-social-spiritual needs of patients with COPD, and their caregivers.
RELEVANCE TO CLINICAL PRACTICE: Integrating nurse led supportive care clinics into COPD services could be a way forward to address the unmet bio-psycho-social-spiritual needs of patients with COPD, and their caregivers.
Although the use of palliative care has increased in recent years, chronically ill Americans within a racial/ethnic minority (non-White) population underutilize this supportive and comfort-giving healthcare service. Consequently, chronically ill minority Americans experience increased pain, symptom burden, and inappropriate use of healthcare resources compared to their white counterparts. A literature review was conducted to compile and synthesize the current state of research pertinent to improving the use of palliative care among chronically ill minority Americans. Selection criteria produced 18 relevant publications, which aided in developing a conceptual model that assimilated early, episodic, and late palliative care phases along the chronic illness continuum. The goal of the conceptual model was to provide a roadmap for healthcare professionals to use when designing, implementing, managing, and/or evaluating palliative care services for chronically ill minority Americans. The literature review demonstrated that minority patients benefitted the most from culturally tailored, systematic interventions (such as advanced care planning education) in all phases of palliative care, which led to increases in advance directive completion, better symptom control, and hospice utilization. The article concludes with a discussion and fictional case study portraying the importance of culturally tailored early palliative care as a catalyst for engaging minority patients in palliative care services.
Background: With growing expense in chronic illness and end-of-life (EOL) care, population-based interventions are needed to reduce the health care cost and improve patients' quality of life. The authors believe that promotion of palliative medicine is one such intervention and this promotion depends on the acceptance of palliative medicine concepts by health care professionals.
Aims of the studies: Perception of palliative medicine in chronic illness and in EOL care by health care professionals was learned in two studies carried out at a teaching community hospital 14 years apart.
Participants and methods: Voluntary and anonymous surveys were randomly distributed among physicians, nurses, and social workers/case managers. Participants in the two studies presented two different groups of health care providers.
Results of the studies: Results of the two studies were essentially similar. On most of the issues, respondents' perceptions were consistent with palliative medicine concepts and confidence in palliation grew over the 14-year period. The authors call this approach a "palliative attitude." Physicians with greater experience performed better in care planning. Younger physicians were more perceptive to withdrawal of care in futile cases. Participants' religion had no influence on perception of palliative medicine. Attendance of educational activities did not influence attitudes of health care professionals. Health care providers who favored involvement of palliative care teams in patients' management were better in care planning, interpretation of the DNR consent, use of opioids at the EOL, use of intensive care, and evaluation of the disease trajectory.
Conclusion: The authors conclude that direct interaction between palliative and interdisciplinary teams in clinical practice is the key factor in the education of health care professionals, in the development of a "palliative attitude," and in the promotion of palliative medicine.
The concept of roles has been crucial to the theoretical understanding of the construction of the dying process and the subjective experience of dying. Talcott Parsons first outlined the sick role in 1951. Beginning in the early 1960s, the academic literature recognized that those with chronic illness do not fit the criteria for the sick role as Parsons defined it. Since the introduction of hospice and palliative care, a new intermediate role has been constructed by the medical system. This role has been designated the chronic sick role. Formally defining the intermediate role between the sick and dying roles will help alleviate the issue of role confusion and serves to define what is now a gray and liminal phase between sickness and dying.
Background: Advanced care planning (ACP) is a process that involves thinking about what medical care one would like should individuals be seriously ill and cannot communicate decisions about treatment for themselves. The literature indicates that ACP leads to increased satisfaction from both patients and healthcare professionals. Despite the well-known benefits of ACP, it is still underutilised in Australia.
Methods: The aim of this study is to investigate the effects of normalising ACP in acute and community settings with the use of specially trained normalisation agents. This is a quasi-experimental study, involving 16 sites (8 intervention and 8 control) in two health districts in Australia. A minimum of total 288 participants will be recruited (144 intervention, 144 control). We will train four registered nurses as normalisation agents in the intervention sites, who will promote and facilitate ACP discussions with adult patients with chronic conditions in hospital and community settings. An audit of the prevalence of ACP and Advanced Care Directives (ACDs) will be conducted before and after the 6-month intervention period at the 16 sites to assess the effects of the ACP service delivered by these agents. We will also collect interview and survey data from patients and families who participate, and healthcare professionals who are involved in this service to capture their experiences with ACP.
Discussion: This study will potentially contribute to better patient outcomes with their health care services. Completion of ACDs will allow patients to express their wishes for care and receive the care that they wish for, as well as ease their family from the burden of making difficult decisions. The study will contribute to development of a new best practice model to normalise ACP that is sustainable and transferable in the processes of: 1) initiation of conversation; 2) discussion of important issues; 3) documentation of the wishes; 4) storage of the documented wishes; and 5) access and execution of the documented wishes. The study will generate new evidence on the challenges, strategies and benefits of normalising ACP into practice in acute and community settings.
Background: Breathlessness, a common symptom in advanced disease, is a distressing, complex symptom that can profoundly affect the quality of one's life. Evidence suggests that specialist palliative care breathlessness intervention services can improve physical well-being, personal coping strategies and quality of life. In the UK, the use of quality improvement methods is well documented in the National Health Service. However, within the independent hospice sector there is a lack of published evidence of using such methods to improve service provision.
Aim: The aim of this project was to reduce the waiting time from referral to service commencement for a hospice breathlessness service by 40%-from a median of 19.5 to 11.5 working days.
Methods: Using a quality planning and systems thinking approach staff identified barriers and blockages in the current system and undertook plan-do-study-act cycles to test change ideas. The ideas tested included offering home visits to patients on long-term oxygen, using weekly team 'huddles', streamlining the internal referral process and reallocating staff resources.
Results: Using quality improvement methods enabled staff to proactively engage in positive changes to improve the service provided to people living with chronic breathlessness. Offering alternatives to morning appointments; using staff time more efficiently and introducing accurate data collection enabled staff to monitor waiting times in real time. The reduction achieved in the median waiting time from referral to service commencement exceeded the project aim.
Conclusions: This project demonstrates that quality improvement methodologies can be successfully used in a hospice setting to improve waiting times and meet the specific needs of people receiving specialist palliative care.
OBJECTIVE: Patients with chronic heart failure (CHF) may be insufficiently treated pharmacologically. Recently, we presented a person-centred integrated Palliative advanced homecaRE and heart FailurE caRe (PREFER) strategy and compared it with usual care (control). Patients managed according to PREFER had improved health-related quality of life and markedly reduced hospitalisations compared with the control group. We hypothesised that these improvements may have been partly due to better drug treatments within the PREFER strategy. Thus, our aim in this study was to explore the management of drug treatments in the PREFER group compared with the control group.
METHODS: Doses and numbers of drugs and the number of patients receiving the target doses based on current guidelines were measured and compared between the groups at the start and finish of the study.
RESULTS: The percentages of ACE inhibitors (ACEIs) or mineralocorticoid receptor antagonists (MRAs) increased, while loop diuretics decreased in the PREFER arm during the study, although the differences were not significant. Beta-receptor blockers (BBs) decreased somewhat in both groups. The number of patients treated with MRAs differed the most between groups, and increased from 10 (28%) to 15 (48%) in the PREFER arm compared with 13 (35%) vs 13 (39%) in the control group. The change in patients receiving full target doses (+8 vs. +1) of the ACEIs/angiotensin receptor blockers, BBs and MRAs were significantly higher (p=0009) in the PREFER arm than in the control arm.
CONCLUSIONS: Person-centred integrated care of patients with severe CHF was associated with increased evidence-based drug treatments, especially MRAs.
CLINICAL TRIAL NUMBER: NCT01304381.
BACKGROUND: Economic evaluations of advance care planning (ACP) in people with chronic kidney disease are scarce. However, past studies suggest ACP may reduce healthcare costs in other settings. We aimed to examine hospital costs and outcomes of a nurse-led ACP intervention compared with usual care in the last 12 months of life for older people with end-stage kidney disease managed with haemodialysis.
METHODS: We simulated the natural history of decedents on dialysis, using hospital data, and modelled the effect of nurse-led ACP on end-of-life care. Outcomes were assessed in terms of patients' end-of-life treatment preferences being met or not, and costs included all hospital-based care. Model inputs were obtained from a prospective ACP cohort study among dialysis patients; renal registries and the published literature. Cost-effectiveness of ACP was assessed by calculating an incremental cost-effectiveness ratio (ICER), expressed in dollars per additional case of end-of-life preferences being met. Robustness of model results was tested through sensitivity analyses.
RESULTS: The mean cost of ACP was AUD$519 per patient. The mean hospital costs of care in last 12 months of life were $100,579 for those who received ACP versus $87,282 for those who did not. The proportion of patients in the model who received end-of-life care according to their preferences was higher in the ACP group compared with usual care (68% vs. 24%). The incremental cost per additional case of end-of-life preferences being met was $28,421. The greatest influence on the cost-effectiveness of ACP was the probability of dying in hospital following dialysis withdrawal, and costs of acute care.
CONCLUSION: Our model suggests nurse-led ACP leads to receipt of patient preferences for end-of-life care, but at an increased cost.
Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process.
BACKGROUND: End-of-life (EOL) care for Latinos with chronic illness is a critically important problem. Latinos with chronic illness suffer worse health outcomes and poorer quality of care due to various issues occurring in care delivery systems. Latinos are less likely than non-Hispanic whites to prepare an advance directive (AD) for health-care decision-making that impacts treatment decisions for when EOL is near. Advance care planning (ACP) interventions tailored specifically for Latinos have rarely been implemented.
OBJECTIVE: The primary aim examines whether a motivational interviewing (MI) intervention increased rates of AD documentation among older Latinos. The secondary aim was to examine whether MI improved communication with providers and family members.
METHODS: We pilot tested a randomized controlled trial with older Latinos >50 years with one or more chronic illnesses, including cancer. Participants were randomly assigned to usual care (UC) receiving ACP education alone versus treatment (TX), which received ACP education, plus MI counseling including interactive decisional support, emotional support, and barrier navigation.
RESULTS: Results of logistic regression indicate TX group participants were significantly more likely to document an AD than UC, however were less ready to talk with health-care providers or family members. Those reporting navigational barriers for talking about dying is difficult showed a significant negative relationship for AD completion even with significant intervention effects.
CONCLUSION: When using MI to motivate individuals toward ACP EOL conversations other factors are important to consider. Further research is needed, especially among Latinos to understand best practices for ACP education and counseling for EOL care.
BACKGROUND: Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. The aim of this study was to compare symptoms before death in LTC for those with cancer, dementia or chronic illness.
METHODS: After-death prospective staff survey of resident deaths with random cluster sampling in 61 representative LTC facilities across New Zealand (3709 beds). Deaths (n = 286) were studied over 3 months in each facility. Standardised questionnaires - Symptom Management (SM-EOLD) and Comfort Assessment in End of life with Dementia (CAD-EOLD) - were administered to staff after the resident’s death.
RESULTS: Primary diagnoses at the time of death were dementia (49%), chronic illness (30%), cancer (17%), and dementia and cancer (4%). Residents with cancer had more community hospice involvement (30%) than those with chronic illness (12%) or dementia (5%). There was no difference in mean SM-EOLD in the last month of life by diagnosis (cancer 26.9 (8.6), dementia 26.5(8.2), chronic illness 26.9(8.6). Planned contrast analyses of individual items found people with dementia had more pain and those with cancer had less anxiety. There was no difference in mean CAD-EOLD scores in the week before death by diagnosis (total sample 33.7(SD 5.2), dementia 34.4(SD 5.2), chronic illness 33.0(SD 5.1), cancer 33.3(5.1)). Planned contrast analyses showed significantly more physical symptoms for those with dementia and chronic illness in the last month of life than those with cancer.
CONCLUSIONS: Overall, symptoms in the last week and month of life did not vary by diagnosis. However, sub-group planned contrast analyses found those with dementia and chronic illness experienced more physical distress during the last weeks and months of life than those with cancer. These results highlight the complex nature of LTC end of life care that requires an integrated gerontology/palliative care approach.
RATIONALE: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).
OBJECTIVES: To identify patient and family caregiver early palliative care needs across stages of COPD severity.
METHODS: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation study of patients with moderate to very severe COPD (FEV1/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life (QOL), anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages.
RESULTS: Patients (n=10) were a mean (±SD) age of 60.4±7.5 years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n=10) were a mean age of 58.3±8.7 years, 40% African American, and 10% male. Overall, 30% (n=6) of participants had poor QOL, 45% (n=9) had moderate-severe anxiety symptoms, 25% (n=5) had moderate-severe depressive symptoms, and 40% (n=8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared to those with moderate-severe COPD.
CONCLUSIONS: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage disease. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.