Background: Palliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.
Aim: To identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.
Design: Within the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.
Setting/participants: Loved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.
Results: 993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.
Conclusions: It is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.
Trial registration number This study was registered at the German Clinical Trials Register (DRKS00013916).
Objectives: To set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life.
Design: Cross-sectional postbereavement survey.
Setting: Regional health services research and development structure representing all health and social care providers involved in the last year of life in Cologne, a city with 1 million inhabitants in Germany.
Participants: 351 bereaved relatives of adult decedents, representative for age and gender, accidental and suspicious deaths excluded.
Results: For the majority (89%) of patients, home was the main place of care during their last year of life. Nevertheless, 91% of patients had at least one hospital admission and 42% died in hospital. Only 60% of informants reported that the decedent had been told that the disease was leading to death. Hospital physicians broke the news most often (58%), with their communication style often (30%) being rated as ‘not sensitive’. Informants indicated highly positive experiences with care provided by hospices (89% ‘good’) and specialist palliative home care teams (87% ‘good’). This proportion dropped to 41% for acute care hospitals, this rating being determined by the feeling of not being treated with respect and dignity (OR=23.80, 95% CI 7.503 to 75.498) and the impression that hospitals did not work well together with other services (OR=8.37, 95% CI 2.141 to 32.71).
Conclusions: Following those data, our regional priority for action now is improvement of care in acute hospitals, with two new projects starting, first, how to recognise and communicate a limited life span, and second, how to improve care during the dying phase. Results and further improvement projects will be discussed in a working group with the city of Cologne, and repeating this survey in 2 years will be able to measure regional achievements.
Trial registration number DRKS00011925.
OBJECTIVES: This study presents the design of an integrated, proactive palliative care pathway covering the full care cycle and evaluates its effects using 3 types of outcomes: (1) physician-reported outcomes, (2) outcomes reported by family, and (3) (utilization of) health care outcomes.
DESIGN: A clustered, partially controlled before-after study with a multidisciplinary integrated palliative care pathway as its main intervention.
SETTING AND PARTICIPANTS: after assessment in hospital departments of oncology, and geriatrics, and in 13 primary care facilities, terminally ill patients were proactively included into the pathway. Patients' relatives and patients' general practitioners (GPs) participated in a before/after survey and in interviews and focus groups.
INTERVENTION: A multidisciplinary, integrated palliative care pathway encompassing (among others) early identification of the palliative phase, multidisciplinary consultation and coordination, and continuous monitoring of outcomes.
MEASURES: Measures included GP questionnaire: perceived quality of palliative care; questionnaires by family members: FAMCARE, QOD-LTC, EDIZ; and 3 types of health care outcomes: (1) utilization of primary care: consultations, intensive care, communication, palliative home visits, consultations and home visits during weekends and out-of-office-hours, ambulance, admission to hospital; (2) utilization of hospital care: outpatient ward consultations, day care, emergency room visits, inpatient care, (radio) diagnostics, surgical procedures, other therapeutic activities, intensive care unit activities; (3) pharmaceutical care utilization.
RESULTS: GPs reported that palliative patients die more often at their preferred place of death, and that they now act more proactively toward palliative patients. Relatives of included, deceased patients reported clinically relevant improved quality of dying, and more timely palliative care. Patients in the pathway received more (intensive) primary care, less unexpected care during out-of-office hours, and more often received hospital care in the form of day care.
CONCLUSIONS AND IMPLICATIONS: An integrated palliative care pathway improves a variety of clinical outcomes important to patients, their families, physicians, and the health care system. The integration of palliative care into multidisciplinary, proactive palliative care pathways, is therefore a desirable future development.
Context: Guardians are surrogate decision makers appointed by a court when other health care decision-makers are unable, unwilling, or unavailable to make decisions. Prior studies suggest that persons under guardianship may experience delays in transitions of care.
Objectives: To compare quality of end-of-life care for persons under guardianship to a matched group on objective indicators and to identify narrative themes characterizing potential obstacles to quality end-of-life care.
Methods: One hundred sixty-seven persons under guardianship who died between 2003 and 2019 within the Veterans Healthcare Administration in Massachusetts and Connecticut matched on a 1:1 basis to persons without guardians. The groups were compared on treatment specialty at death, days of hospice and intensive care unit care, and receipt of palliative care consultation. Additionally, patient narratives for those under guardianship with extended lengths in intensive care unit were subjected to qualitative analysis.
Results: Overall, <1% were under guardianship. Within this sample of persons who died within the Veterans Health Administration, persons under guardianship were as likely as patients in the comparison group to receive palliative care consultation (odds ratio [CI] = 0.93 [.590-1.46], P = .359), but were more likely to have ethics consultation (odds ratio [CI] = 0.25 [0.66–0.92], P = .036) and have longer lengths of ICU admission (ß = -.34, t = -2.70, P = .009). Qualitative findings suggest that issues related to family conflict, fluctuating medical course, and limitations in guardian authority may underlie extended lengths of stay.
Conclusion: Guardianship appears to be rare, and as a rule, those under guardianship have equal access to hospice and palliative care within Veterans Health Administration. Guardianship may be associated with health-care challenges in a small number of cases, and this may drive perceptions of adverse outcomes.
Continuity of care (COC) has been emphasized in research on terminal cancer patients to increase the quality of end-of-life care; however, limited research has been conducted on end-stage renal disease patients. We applied a retrospective cohort design on 29,095 elderly patients with end-stage renal disease who died between 2005 and 2013. These patients were identified from the National Health Insurance Research Database of Taiwan. The provider Continuity of Care Index (COCI) and site COCI were calculated on the basis of outpatient visits during the 6-12 months before death. We discovered that increases in the provider COCI were significantly associated with reductions in health expenditures after adjusting for confounders, especially in inpatient and emergency departments, where the treatment intensity is high. Higher provider and site COC were also associated with lower utilization of acute care and invasive treatments in the last month before death. Provider COC had a greater effect on end-of-life care expenditures than site COC did, which indicated significant care coordination gaps within the same facility. Our findings support the recommendation of prioritizing the continuity of end-of-life care, especially provider continuity, for patients with end-stage renal disease.
OBJECTIVES: Assess whether frequently-used claims-based end-o-life (EOL) measures are associated with higher ratings of care quality.
DESIGN: Retrospective cohort study.
SETTING/PARTICIPANTS: Deceased fee--for-service Medicare beneficiaries with cancer who underwent chemotherapy during July 2016 to January 2017 and died within 12 months and their caregiver respondents to an after-death survey (n = 2,559).
MEASUREMENTS: We examined claims-based measures of EOL care: chemotherapy 14 days or more before death; inpatient admissions, intensive care unit (ICU) use, and emergency department (ED) visits 30 days or more before death; hospice election and the timing of election before death. Primary outcomes are family ratings of “excellent” care in the last month of life and reports that hospice care began “at the right time.” Associations were assessed with logistic regression, adjusted by patient characteristics.
RESULTS: Family rated EOL care as excellent less often, if within 30 days before death the cancer patient had inpatient admissions (1 hospitalization = 41.5% vs 51.5% none, adjusted difference -10.1 percentage points), ICU use (38.6% for any ICU use vs 47.4% none; adjusted difference -8.8 percentage points), ED visits (41.0% 1 visit vs 51.6% no visits; adjusted difference -10.6 percentage points), or elected hospice within 7 days before death. Among hospice enrollees, family more often reported that hospice began at the right time if it started at least 7 days before death (hospice 1–2 days before death 60.2% vs hospice 7–13 days 74.9%; adjusted difference +14.7 percentage points).
CONCLUSIONS: Claims-based measures of EOL care for cancer patients that reflect avoidance of hospital-based care and earlier hospice enrollment are associated with higher ratings of care quality by bereaved family members.
Primary palliative care is essential for the continuity of care in severe COPD. This study aimed to identify essential factors and aspects to enhance the quality of primary palliative care for adults with severe COPD living in the community. Interviews with medical professionals from six institutions located in two major metropolitan areas in Japan were conducted, and these interviews were analyzed by using a qualitative content analysis approach. Results indicate that effective collaborative communication among team members, long-term care insurance system and related services, and palliative care techniques were the primary themes.
Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality.
Methods: Mortality follow-back postal survey.
Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco).
Participants: Informal carers (ICrs) of decedents who had received palliative care.
Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG).
Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief.
Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66–76 h per week from ICrs for ‘being on call’, 52–55 h for ICrs being with them, 19–21 h for personal care, 17–21 h for household tasks, 15–18 h for medical procedures and 7–10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden.
Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.
BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a fatal disease requiring palliative care. End-of-life care has been well studied in patients with incurable cancer, but less is known about the quality of such care for patients with ALS.
AIM: To study whether the quality of end-of-life care the last week in life for patients dying from ALS differed compared to patients with cancer in terms of registered symptoms, symptom management and communication.
DESIGN: This retrospective comparative registry study used data from the Swedish Registry of Palliative Care for 2012-2016. Each patient with ALS (n = 825) was matched to 4 patients with cancer (n = 3300).
RESULTS: Between-group differences in assessments for pain and other symptoms were significant (p < 0.01), and patients with ALS had fewer as-needed injection drugs prescribed than patients with cancer. Patients with ALS also had dyspnoea and anxiety significantly more often than patients with cancer. There was no significant difference in communication about transition to end-of-life care between the two groups. Patients dying from ALS received artificial nutrition on their last day of life significantly more often than patients with cancer.
CONCLUSIONS: The results indicate that patients with ALS receive poorer end-of-life care than patients dying from cancer in terms of validated symptom assessments, prescription of as-needed drugs, and timely cessation of artificial nutrition. Educational efforts seem needed to facilitate equal care of dying patients, regardless of diagnosis.
OBJECTIVES: The aim was to review evidence from all randomized controlled trials (RCTs) using palliative care education or staff training as an intervention to improve nursing home residents' quality of life (QOL) or quality of dying (QOD) or to reduce burdensome hospitalizations.
DESIGN: A systematic review with a narrative summary.
SETTING AND PARTICIPANTS: Residents in nursing homes and other long-term care facilities.
METHODS: We searched MEDLINE, CINAHL, PsycINFO, the Cochrane Library, Scopus, and Google Scholar, references of known articles, previous reviews, and recent volumes of key journals. RCTs were included in the review. Methodologic quality was assessed.
RESULTS: The search yielded 932 articles after removing the duplicates. Of them, 16 cluster RCTs fulfilled inclusion criteria for analysis. There was a great variety in the interventions with respect to learning methods, intensity, complexity, and length of staff training. Most interventions featured other elements besides staff training. In the 6 high-quality trials, only 1 showed a reduction in hospitalizations, whereas among 6 moderate-quality trials 2 suggested a reduction in hospitalizations. None of the high-quality trials showed effects on residents' QOL or QOD. Staff reported an improved QOD in 1 moderate-quality trial.
CONCLUSIONS AND IMPLICATIONS: Irrespective of the means of staff training, there were surprisingly few effects of education on residents' QOL, QOD, or burdensome hospitalizations. Further studies are needed to explore the reasons behind these findings.
End of life discussions frequently take place in surgical intensive care units, as a significant number of patients die while admitted to the hospital, and surgery is common during the last month of life. Multiple barriers exist to the initiation of these conversations, including: miscommunication between clinicians and surrogates, a paternalistic approach to surgical patients, and perhaps, conflicts of interest as an unwanted consequence of surgical quality reporting. Goal discordant care refers to the care that is provided to a patient that is incapacitated and that is not concordant to his/her wishes. This is a largely unrecognized medical error with devastating consequences, including inappropriate prolongation of life and non-beneficial therapy utilization. Importantly, hospice and palliative care needs to be recognized as quality care in order to deter the incentives that might persuade clinicians from offering these services.
Objectives: Evidence linking end-of-life-care quality in ICUs to bereaved family members’ psychologic distress remains limited by methodological insufficiencies of the few studies on this topic. To examine comprehensively the associations of family surrogates’ severe anxiety and depressive symptoms with end-of-life-care quality in ICUs over their first 6 months of bereavement.
Design: Prospective, longitudinal, observational study.
Setting/Participants: Family surrogates (n = 278) were consecutively recruited from seven medical ICUs at two academically affiliated medical centers in Taiwan.
Measurements and Statistical Analysis: Family surrogates’ anxiety and depressive symptoms were assessed 1, 3, and 6 months postloss using the Hospital Anxiety and Depression Scale. Family satisfaction with end-of-life care in ICUs was assessed 1-month postloss by the Family Satisfaction in the ICU questionnaire. Patients’ end-of-life care was documented over the patient’s ICU stay. Associations of severe anxiety and depressive symptoms (scores = 8 for each subscale) with end-of-life-care quality in ICUs (documented by patient care received and family satisfaction with end-of-life care in ICUs) were examined by multivariate logistic regression models with generalized estimating equation.
Main Results: Prevalence of severe anxiety and depressive symptoms decreased significantly over time. Surrogates’ lower likelihood of severe anxiety or depressive symptoms 3–6 month postloss was associated with death without cardiopulmonary resuscitation, withdrawing life-sustaining treatments, and higher family satisfaction with end-of-life care in ICUs. Bereaved surrogates’ higher likelihood of these symptoms was associated with physician-surrogate prognostic communication and conducting family meetings before patients died.
Conclusions: End-of-life-care quality in ICUs is associated with bereaved surrogates’ psychologic well-being. Enhancing end-of-life-care quality in ICUs by improving the process of end-of-life care, for example, promoting death without cardiopulmonary resuscitation, withdrawing life-sustaining treatments, and increasing family satisfaction with end-of-life care, can lighten bereaved family surrogates’ severe anxiety symptoms and severe depressive symptoms.
PURPOSE: The Oncology Care Model (OCM) was developed to improve care while also supporting patient-centered practices. This model could significantly affect experiences of patients with cancer; however, previous studies have not explored patient perspectives.
PATIENTS AND METHODS: This cross-sectional study used focus group and survey methodology to explore patient experiences in the OCM. The sample included 213 patients (OCM patients, n = 130 recruited within OCM practices; non-OCM patients, n = 83 recruited via e-mail from the Cancer Support Community Cancer Experience Registry).
RESULTS: Findings suggest that patients in OCM practices were more likely to report that their cancer care team asked about social/emotional distress or concerns and more likely to have social/emotional resources offered. OCM patients were also more likely to have discussed advance directives with providers. They were also more likely to be satisfied with provider explanations of treatment benefits as well as treatment risks and adverse effects. Lastly, OCM patients were significantly more satisfied with discussion of treatment costs and provided higher ratings of preparation by their cancer care team for management of adverse effects.
CONCLUSION: Patients in this study reported experiences consistent with many of the key goals of the OCM. This is promising and may indicate the need to expand the model. However, because of the potential selection bias of our sampling method, more research is needed.
Importance: Medicare Advantage (MA) insures an increasing proportion of Medicare beneficiaries, but evidence is lacking on patient or family perceptions of the quality of end-of-life care in MA vs traditional Medicare.
Objective: To determine if there is a difference in quality of care reported by family and friends of individuals who died while insured by MA vs traditional Medicare at the end of life.
Design, Setting, and Participants: This cross-sectional study used the 2011 to 2017 Medicare-linked National Health and Aging Trends Study to conduct population-based survey research representing 8 668 829 Medicare enrollees. Included individuals were 2119 enrollees who died when aged 65 years or older, with quality of care reported by a family member or close friend familiar with the individual’s last month of life. Analysis was conducted in July 2020.
Exposures: MA enrollment at the time of death or before hospice enrollment.
Main Outcomes and Measures: Perception of end-of-life care was measured with 9 validated items, with the primary outcome variable being overall care rated not excellent. We conducted a propensity score–weighted multivariable model to examine the association of each item with MA vs traditional Medicare enrollment. The propensity score and multivariable model included covariates capturing demographic and socioeconomic factors, function and health, and relationship of the respondent to the individual who died. The sample was then stratified by hospice enrollment and setting of care in the last month.
Results: Of 2119 people in the sample, 670 individuals were enrolled in MA at the time of death or prior to hospice (32.7%) and 1449 were enrolled in traditional Medicare (67.3%). In survey-weighted percentages, 53.6% (95% CI, 51.0% to 56.1%) were women and 43.4% (95% CI, 41.5% to 45.3%) were older than 85 years at the time of death. In the adjusted model, family and friends of individuals in MA were more likely to report that care was not excellent (odds ratio, 1.28; 95% CI, 1.01 to 1.61; P = .04) and that they were not kept informed (odds ratio, 1.48; 95% CI, 1.06 to 2.05; P = .02). For those in nursing homes, there was an estimated probability of 57.2% of respondents reporting that care was not excellent for individuals with traditional Medicare, compared with 77.9% of respondents for individuals with MA (marginal increase for those in MA, 0.21; 95% CI, 0.08 to 0.32; P = .001).
Conclusions and Relevance: In this cross-sectional study of people who died while enrolled in Medicare, friends and family of those in MA reported lower-quality end-of-life care compared with friends and family of those enrolled in traditional Medicare. These findings suggest that, given the rapid growth of MA, Medicare should take steps to ensure that MA plans are held accountable for quality of care at the end of life.
BACKGROUND: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer's disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD).
OBJECTIVE: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team.
DESIGN: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA.
SUBJECTS: Hospice social workers currently practicing in the United States with at least 1 year of experience.
MEASUREMENTS: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form.
RESULTS: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p < .0001) and confidence in managing behavioral symptoms (16.86%, p = .01) and depression (25.18%, p < .0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program.
CONCLUSIONS: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.
Background: Palliative care interventions in the ED capture high-risk patients at a time of crisis and can dramatically improve patient-centered outcomes.
Objective: To understand the facilitators that contributed to the success of the Primary Palliative Care for Emergency Medicine (PRIM-ER) quality improvement pilot intervention.
Design: Effectiveness was evaluated through semi-structured interviews. Reach outcomes were measured by percent of all full-time emergency providers (physicians, physician assistants, nurses) who completed the intervention education components and baseline survey assessing attitudes and knowledge on end-of-life care.
Participants: Emergency medicine providers affiliated with two medical centers (N = 197). Interviews conducted with six key informants at both institutions.
Approach: Interviews were recorded, transcribed, and analyzed using deductive and inductive approaches. Descriptive statistics include reach outcomes and baseline survey results.
Key Results: Both sites successfully implemented all components of the intervention and achieved a high level (> 75%) of intervention reach. Two themes emerged as facilitators to successful effectiveness facilitators of PRIM-ER: (1) institutional leadership support and (2) leveraging established quality improvement (QI) processes. Institutional support included leveraging leadership with authority to (a) mandate trainings; (b) substitute PRIM-ER education for normally scheduled education; and (c) provide protected time to implement intervention components. Effectiveness was also enhanced by capitalizing on existing QI processes which included (a) leveraging interdisciplinary partnerships and communication plans and (b) monitoring performance improvement data.
Conclusions: Capitalizing on strong institutional leadership support and established QI processes enhanced the reach and effectiveness of the PRIM-ER pilot. These findings will guide the PRIM-ER researchers in scaling up the intervention in the remaining 33 sites, as well as enhance the planning of other complex quality improvement interventions in clinical settings.
Registration Details: ClinicalTrials.gov Identifier: NCT03424109; Grant Number: AT009844-01
CONTEXT: Although the COVID-19 pandemic might affect important clinical routines, few studies have focused on the maintenance of good quality in end-of-life care.
OBJECTIVES: The objective was to examine whether adherence to clinical routines for good end-of-life care differed for deaths due to COVID-19 compared to a reference cohort from 2019, and whether they differed between nursing homes and hospitals.
METHODS: Data about five items reflecting clinical routines for persons who died an expected death from COVID-19 during the first three months of the pandemic (March-May 2020) were collected from the Swedish Register of Palliative Care. The items were compared between the COVID-19 group and the reference cohort, and between the nursing home and hospital COVID-19 deaths.
RESULTS: 1316 expected deaths were identified in nursing homes and 685 in hospitals. Four of the five items differed for total COVID-19 group compared to the reference cohort: fewer were examined by a physician during the last days before death, pain and oral health were less likely to be assessed, and fewer had had a specialised palliative care team consultation (p < .0001, respectively). Assessment of symptoms other than pain did not differ significantly. The five items differed between the nursing homes and hospitals in the COVID-19 group, most notably regarding the proportion of persons examined by a physician during the last days (nursing homes - 18%, hospitals - 100%).
CONCLUSION: This national register study shows that several clinical routines for end-of-life care did not meet the usual standards during the first three months of the COVID-19 pandemic in Sweden. Higher preparedness for and monitoring of end-of-life care quality should be integrated into future pandemic plans.
Background: A major goal of hospice care is to provide individually tailored emotional and spiritual support to caregivers of hospice patients.
Objectives: Examine the association between reported emotional support and caregivers' overall rating of hospice care, overall and by race/ethnicity/language.
Subjects: We analyzed survey data corresponding to 657,805 decedents/caregivers who received care from 3160 hospice programs during January 2017–December 2018.
Measurements: Linear regression models examined the association between caregiver-reported receipt of emotional and spiritual support (“too little” vs. “right amount” vs. “too much”) and overall rating of the hospice (0 vs. 100 rating). Interaction terms assessed variation in this association by race/ethnicity/language.
Results: “Too much” emotional support was less common than “too little,” except for caregivers of Hispanic decedents responding in Spanish. “Too little” support was strongly associated with lower hospice ratings for all groups (compared to “right amount” of support, p < 0.001). In contrast, the negative association between “too much” support and hospice rating was much smaller (p < 0.001) among caregivers of white and black decedents. “Too much” support was associated with more positive ratings among caregivers of Hispanic decedents (p < 0.001).
Conclusions: Receipt of “too much” support is a less common and much weaker driver of poor hospice ratings than receipt of “too little” support for all groups, and is not always viewed negatively. This suggests that for hospice evaluation, “too much” support should not be scored equivalently to “too little” support and that providing enough support should be a hospice priority.
Background: International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin.
The aim of the study was to translate and validate the “Care of the Dying Evaluation” (CODE) into German (CODE-GER).
Methods: Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient’s death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0–10).
Results: Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, a = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = -.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low.
Conclusion: The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research.
Lung cancer is the most common cancer and leading cause of cancer mortality globally. Lung cancer is associated with significant morbidity, with symptoms often being poorly managed, causing significant symptom burden for both patients and their family caregivers. In people with life-limiting illnesses including advanced cancer, palliative care has been effective in improving symptom control, physical and mental wellbeing, quality of life, and survivorship; with benefits extending to caregivers while in the role and subsequently. Earlier integration of palliative care within oncology may be associated with improved patient outcomes, and has been supported by two Lancet commissions and national guidelines. The evidence for its effectiveness, however, has been mixed across the cancer spectrum. The aim of this review was to evaluate the current evidence for the effectiveness of early integrated palliative care in improving outcomes for people with lung cancer and their caregivers. Meta-analyses were performed where studies used the same measure. Otherwise, synthesis used a narrative approach. Similar to other types of advanced cancer, this review reveals mixed evidence for the effectiveness of early referral to palliative care and for the effectiveness of individual palliative interventions for people with lung cancer and their caregivers. Evidence that on-demand palliative care is equally, if not more effective than palliative care that is routinely provided, raises the question whether initiation and provision of palliative care as part of multidisciplinary lung cancer care ought to be guided by an early referral or need-based referral. Better understanding of what constitutes palliative care when delivered to people with lung cancer and their caregivers will help delineate the correlation with reported outcomes for these populations.