Health-services utilisation amongst older persons during the last year of life: a population-based study.

BACKGROUND: Accurate population-based data regarding hospital-based care utilisation by older persons during their last year of life are important in health services planning. We investigated patterns of acute hospital-based service use at the end of life, amongst older decedents in New South Wales (NSW), Australia. METHODS: Data from all persons aged ≥70 years who died in the state of NSW Australia in 2007 were included. Several measures of hospital-based service utilisation during the last year of life were assessed from retrospectively linked data comprising data for all registered deaths, cause of death, hospital care during the last year of life (NSW Admitted Patient Data Collection [APDC] and Emergency Department [ED] Data Collection [EDDC]), and the NSW Cancer Registry. RESULTS: Amongst 34,556 decedents aged ≥70 years, 82% (n = 28,366) had ≥1 hospitalisation during the last year of life (median 2), and 21% > 3 hospitalisations. Twenty-five percent (n = 5485) of decedents attended ED during the last week of life. Overall, 21% had a hospitalisation > 30 days in the last year of life, and 7% spent > 3 months in hospital; 79% had ≥1 ED attendance, 17% > 3. Nine percent (n = 3239) spent time in an intensive care unit. Fifty-three percent (n = 18,437) died in an inpatient setting. Hospital records had referenced palliative care for a fifth (7169) of decedents. Adjusting for age group, sex, place of residence, area-level socioeconomic status, and cause of death, having > 3 hospitalisations during the last year of life was more likely for persons dying from cancer (35% versus 16% non-cancer deaths, adjusted odds ratio [aOR] 2.33), 'younger' old decedents (29% for age 70-79 and 20% for age 80-89 versus 11% for 90+, aOR 2.42 and 1.77 respectively) and males (25% versus 17% females, aOR 1.38). Patterns observed for other hospital-based service use were similar. CONCLUSIONS: This population-based study reveals high use of hospital care among older persons during their last year of life, although this decreased with increasing older age, providing important data to inform health services planning for this population, and highlighting aspects requiring further study.

Perspectives on advance care planning among patients recently requiring non-invasive ventilation for acute respiratory failure: A qualitative study using thematic analysis.

BACKGROUND: Patients requiring non-invasive ventilation for acute-on-chronic respiratory failure due to chronic obstructive pulmonary disease or heart failure exacerbations may have a poor prognosis underscoring the importance of advance care planning. AIM: We aimed to describe attitudes to, and experiences of, discussing the future among patients recently treated with non-invasive ventilation. DESIGN: Qualitative research using thematic analysis. SETTINGS AND PARTICIPANTS: Tertiary teaching hospital. Patients with acute hypercapnic respiratory failure requiring non-invasive ventilation. RESULTS: Individuals recently treated with non-invasive ventilation describe feeling the future is beyond their control and instead controlled by their illness. Participants often recognised their poor prognosis but avoided discussing some difficult topics. The majority preferred not to undergo cardiopulmonary resuscitation but most had not discussed this with healthcare professionals. When participants voiced concerns about their future health to family members, they were met with polarised responses. Some encountered willingness for further discussion, while others met deflection, deterring further conversation. An overarching narrative of 'Looking through my illness to an uncertain but concerning future' unites these themes. CONCLUSION: This study suggests opportunities and barriers for advance care planning in individuals with chronic disease. Patients' understanding of their prognosis and their attitudes to cardiopulmonary resuscitation suggests an opportunity for advance care planning. Structuring discussions around patients' preferences for care during future exacerbations may foster a sense of control over the future despite illness. The diversity of familial responses to patients' concerns about their future health has implications for advance care planning. These findings have the potential to improve care for patients with respiratory failure and suggest an important ongoing research agenda.

Acute hospital-based services used by adults during the last year of life in New South Wales, Australia: a population-based retrospective cohort study.

BACKGROUND: There is limited information about health care utilisation at the end of life for people in Australia. We describe acute hospital-based services utilisation during the last year of life for all adults (aged 18+ years) who died in a 12-month period in Australia's most populous state, New South Wales (NSW). METHODS: Linked administrative health data were analysed for all adults who died in NSW in 2007 (the most recent year for which cause of death information was available for linkage for this study). The data comprised linked death records (2007), hospital admissions and emergency department (ED) presentations (2006-2007) and cancer registrations (1994-2007). Measures of hospital-based service utilisation during the last year of life included: number and length of hospital episodes, ED presentations, admission to an intensive care unit (ICU), palliative-related admissions and place of death. Factors associated with these measures were examined using multivariable logistic regression. RESULTS: Of the 45,749 adult decedents, 82% were admitted to hospital during their last year of life: 24% had >3 care episodes (median 2); 35% stayed a total of >30 days in hospital (median 17); 42% were admitted to 2 or more different hospitals. Twelve percent of decedents spent time in an ICU with median 3 days. In the metropolitan area, 80% of decedents presented to an ED and 18% had >3 presentations. Overall 55% died in a hospital or inpatient hospice. Although we could not quantify the extent and type of palliative care, 24% had mention of "palliative care" in their records. The very elderly and those dying from diseases of the circulatory system or living in the least disadvantaged areas generally had lower hospital service use. CONCLUSIONS: These population-wide health data collections give a highly informative description of NSWhospital-based end-of-life service utilisation. Use of hospital-based services during the last year of life was common, with substantial variation across sociodemographic groups, especially defined by age, cause of death and socioeconomic classification of the decedents' place of residence. Further research is now needed to identify the contributors to these findings. Gaps in data collection were identified - particularly for palliative care and patient-reported outcomes. Addressing these gaps should facilitate improved monitoring and assessment of service use and care.

Retrospective studies of end-of-life resource utilization and costs in cancer care using health administrative data: a systematic review.

BACKGROUND: There has been an increase in observational studies using health administrative data to examine the nature, quality, and costs of care at life's end, particularly in cancer care. AIM: To synthesize retrospective observational studies on resource utilization and/or costs at the end of life in cancer patients. We also examine the methods and outcomes of studies assessing the quality of end-of-life care. DESIGN: A systematic review according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and AMSTAR (A Measurement Tool to Assess Systematic Reviews) methodology. DATA SOURCES: We searched MEDLINE, Embase, CINAHL, and York Centre for Research and Dissemination (1990-2011). Independent reviewers screened abstracts of 14,424 articles, and 835 full-text manuscripts were further reviewed. Inclusion criteria were English-language; at least one resource utilization or cost outcome in adult cancer decedents with solid tumors; outcomes derived from health administrative data; and an exclusive end-of-life focus. RESULTS: We reviewed 78 studies examining end-of-life care in over 3.7 million cancer decedents; 33 were published since 2008. We observed exponential increases in service use and costs as death approached; hospital services being the main cost driver. Palliative services were relatively underutilized and associated with lower expenditures than hospital-based care. The 15 studies using quality indicators demonstrated that up to 38% of patients receive chemotherapy or life-sustaining treatments in the last month of life and up to 66% do not receive hospice/palliative services. CONCLUSION: Observational studies using health administrative data have the potential to drive evidence-based palliative care practice and policy. Further development of quality care markers will enhance benchmarking activities across health care jurisdictions, providers, and patient populations.

The use of non-invasive ventilation for the relief of dyspnoea in exacerbations of chronic obstructive pulmonary disease; a systematic review.

BACKGROUND AND OBJECTIVE: Non-invasive ventilation (NIV) improves outcomes in patients with acute exacerbations of COPD (AECOPD); however, the efficacy in relieving dyspnoea is uncertain. The objective of this systematic review was to identify, synthesize and interpret the data regarding the relief of dyspnoea afforded by NIV in patients admitted with acute respiratory failure occurring during AECOPD. METHODS: Randomized controlled trials (RCTs) comparing usual medical care (UMC) to UMC plus NIV and reporting dyspnoea as a patient-reported outcome were identified by searching relevant databases and manual searching. The full text of potentially relevant articles was retrieved. Data describing the impact of NIV on dyspnoea was extracted. RESULTS: Four RCTs met the review criteria. One found NIV did not relieve dyspnoea. The other three RCTs reported NIV relieving dyspnoea. The degree of dyspnoea relief was clinically significant in two of these three studies. However, in all but one RCT, methodological or reporting limitations constrain the confidence that can be had in this conclusion. CONCLUSIONS: Limited data exist to determine if NIV relieves subjective dyspnoea in AECOPD. Due to limitations in these studies, it is not possible to definitively conclude if NIV relieves dyspnoea. Standardized reporting and analysis of patient reported outcomes will facilitate objective comparisons of interventions with respect to symptom relief. Future studies involving NIV should routinely incorporate patient reported outcomes in order to answer the important clinical question: 'Does NIV relieve dyspnoea?'

Respiratory Failure, Noninvasive Ventilation, and Symptom Burden: An Observational Study.

BACKGROUND: Noninvasive ventilation (NIV) is commonly used to manage acute respiratory failure due to decompensated cardiorespiratory disease. We describe symptom burden in this population. MEASURES: Fifty consecutive, consenting, English-speaking, cognitively intact patients, admitted to wards other than the intensive care unit in a tertiary teaching hospital and treated with NIV for hypercapnic respiratory failure, were recruited. The 14-item Condensed Memorial Symptom Assessment Scale was used to assess physical and psychological symptoms within 36 hours of commencing NIV. Breathlessness (using Borg score), pain location and intensity using a numerical rating scale, and four symptoms potentially prevalent in patients undergoing NIV (cough, sputum, gastric bloating, and dry eyes) were also assessed. OUTCOMES: Patients reported a median of 10 symptoms (IQR 9-13). A median of five symptoms (IQR 3-7) were rated as severe. Breathlessness was the most prevalent and most distressing symptom, with participants reporting a mean maximum Borg score of 7.55 over the 24 hours before admission. Dry mouth, lack of energy, cough, sputum, difficulty sleeping, and psychological symptoms were prevalent. Pain, when reported, was of moderate intensity and contributed to distress. CONCLUSIONS/LESSONS LEARNED: This study describes the patient-reported symptoms occurring during an episode of acute respiratory failure. Understanding the symptom profile of patients in this setting may allow clinicians to target symptom relief while simultaneously managing respiratory failure, enhancing care.

Experience of acute noninvasive ventilation-insights from 'Behind the Mask': a qualitative study.

OBJECTIVE: Non-invasive ventilation (NIV) is widely used in the management of acute and acute-on-chronic respiratory failure. Understanding the experiences of patients treated with NIV is critical to person-centred care. We describe the subjective experiences of individuals treated with NIV for acute hypercapnic respiratory failure. DESIGN: Qualitative face-to-face interviews analysed using thematic analysis. SETTING: Australian tertiary teaching hospital. PARTICIPANTS: Individuals with acute hypercapnic respiratory failure treated with NIV outside the intensive care unit. Individuals who did not speak English or were unable or unwilling to consent were excluded. RESULTS: 13 participants were interviewed. Thematic saturation was achieved. Participants described NIV providing substantial relief from symptoms and causing discomfort. They described enduring NIV to facilitate another chance at life. Although participants sometimes appeared passive, others expressed a strong conviction that they knew which behaviours and treatments relieved their distress. Most participants described gaps in their recollection of acute hospitalisation and placed a great amount of trust in healthcare providers. All participants indicated that they would accept NIV in the future, if clinically indicated, and often expressed a sense of compulsion to accept NIV. Participants' description of their experience of NIV was intertwined with their experience of chronic disease. CONCLUSIONS: Participants described balancing the benefits and burdens of NIV, with the goal of achieving another chance at life. Gaps in recall of their treatment with NIV were frequent, potentially suggesting underlying delirium. The findings of this study inform patient-centred care, have implications for the care of patients requiring NIV and for advance care planning discussions.

Insights from linking routinely collected data across Australian health jurisdictions: a case study of end-of-life health service use.

OBJECTIVES: The jurisdictional nature of routinely collected health data in Australia has created challenges for linking data across state/territory and federal government boundaries. This has impeded understanding of the interplay between service use across hospital and community care. Our objective was to demonstrate the value-add of cross-jurisdictional data using a case study of health service use and the factors associated with healthcare use towards the end of life. STUDY TYPE: Retrospective cohort study using routinely collected health data. METHODS: We used two decedent cohorts of people aged ≥65 years who died in New South Wales (NSW), Australia, in 2006 or 2007. The population cohort comprised the general NSW population linked to NSW data collections; the other cohort comprised Australian Government Department of Veterans' Affairs (DVA) clients (with full healthcare entitlements) linked to NSW and Commonwealth data. We compared information available on health services received during the last 6 months of life and ran multivariable analyses for both cohorts to demonstrate the added value of the Commonwealth data. RESULTS: We included 37 567 decedents in the population cohort and 11 259 in the DVA cohort. Cancer was the cause of death for 27% of the NSW cohort and 22% of the DVA cohort; approximately 40% of decedents in each cohort had a cancer history. We summarise information on hospital services for both cohorts and examine community care (general practitioner consultations, specialist presentations, prescriptions dispensed) for the DVA cohort only. Multivariable analyses in the DVA cohort demonstrated that high rates of emergency department (ED) presentations and hospitalisation were associated with higher rates of use of all health services, including community care. Use of primary care did not reduce ED or hospital use. We were not able to examine the interplay between community and hospital care in the NSW population cohort. CONCLUSIONS: In our case study, we demonstrated the value-add of Commonwealth data for understanding the drivers of hospital services use, which has implications for service delivery and resource allocation. There is an abundance of routinely collected health data in Australia that can be used to describe whole-of-healthcare use for a broad range of issues.

Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers.

Significant demands are being placed on the informal caregivers of chronically ill patients, including those suffering from cancer. Health care professionals need to be aware of these demands, and they need effective tools to assess the impact these demands place on the caregivers. Over the past 25 years, researchers have developed self-report instruments to assess informal caregivers. These instruments assess various aspects of the caregiving experience, including caregiver burden, needs, and quality of life. The purpose of this review was to identify and critically evaluate these instruments. MEDLINE and PUBMED were searched from 1966 to 2002. After an extensive literature search and review, and utilizing specific inclusion criteria, 28 instruments were identified and evaluated in terms of their development, content, and psychometric properties. In addition, a history of the construct and measurement development in the areas of caregiver burden, needs, and quality of life are discussed. Although some further development and refinement of instruments could benefit the field, depending on the questions researchers or clinicians seek to pursue, there are many proven tools available for their use. Future research needs to use these instruments to assess the effectiveness of interventions aimed at improving the care of the caregivers.

Acute hospital-based services utilisation during the last year of life in New South Wales, Australia: methods for a population-based study.

OBJECTIVES: The aim of this study is to describe healthcare utilisation in the last year of life for people in Australia, to help inform health services planning. The methods and datasets that are being used are described in this paper. DESIGN/SETTING: Linked, routinely collected administrative health data are being analysed for all people who died in New South Wales (NSW), Australia's most populous state, in 2007. The data comprised linked death records (2007), hospital admissions and emergency department presentations (2006-2007) and cancer registrations (1994-2007). PARTICIPANTS: There were 46 341 deaths in NSW in 2007. The initial analyses include 45 760 decedents aged 18 years and over. OUTCOME MEASURES: The primary measures address the utilisation of hospital-based services at the end of life, including number and length of hospital admissions, emergency department presentations, intensive care admissions, palliative-related admissions and place of death. RESULTS: The median age at death was 80 years. Cause of death was available for 95% of decedents and 85% were linked to a hospital admission record. In the greater metropolitan area, where data capture was complete, 83% of decedents were linked to an emergency department presentation. 38% of decedents were linked to a cancer diagnosis in 1994-2007. The most common causes of death were diseases of the circulatory system (34%) and neoplasms (29%). CONCLUSIONS: This study is among the first in Australia to give an information-rich census of end-of-life hospital-based experiences. While the administrative datasets have some limitations, these population-wide data can provide a foundation to enable further exploration of needs and barriers in relation to care. They also serve to inform the development of a relatively inexpensive, timely and reliable approach to the ongoing monitoring of acute hospital-based care utilisation near the end of life and inform whether service access and care are optimised.

Specialist respiratory physicians' attitudes to and practice of advance care planning in COPD. A pilot study.

BACKGROUND: Advance care planning (ACP) is increasingly recognised as important in chronic obstructive pulmonary disease (COPD). Specialist respiratory physicians (RPs) are crucial in enabling ACP in patients with COPD. Accordingly, understanding their practice and attitudes regarding ACP is important. METHODS: We developed and piloted a survey to assess RPs practices, attitudes and educational needs in ACP. RESULTS: The response rate was 41% (17/41). The instrument was brief and acceptable to participants. Among respondents, 13% reported they had discussed ACP with "most" of their patients; 31% with "about half"; 50% with "a few" and 6% with "none or almost none". Although 57% of respondents preferred outpatient discussions, most discussions occurred as inpatients. Diagnosis, purpose of treatment and incurability of COPD were reported as commonly discussed but the appointment of a health care proxy, the patients' values and goals, and palliative care options were rarely addressed. Reported barriers to ACP included: difficulty prognosticating; time constraints; and perceived patient reticence. Facilitators included increasing patient frailty and patient willingness to discuss. Most respondents reported receiving some formal training in ACP and refined skills by observing colleagues. Many were interested in further educational opportunities. CONCLUSION: This pilot found the new instrument was acceptable. Findings suggest that ACP discussions are infrequent with the majority occurring in the inpatient setting, with key elements omitted. Participants generally had favourable attitudes to ACP and recognised for the need for ongoing training. These early findings require further investigation.

Caregiving near the end of life: unmet needs and potential solutions.

OBJECTIVE: A key aspect of the role of clinicians caring for patients in the setting of advanced illness focuses on attending to the needs of informal caregivers during the end-of-life period. The purpose of this study was twofold: (1) to complement and enrich existing quantitative findings regarding caregiver burden near the end of life, and (2) to identify potential solutions to caregivers' unmet needs in an effort to assist clinicians in the development of clinical interventions. METHODS: This qualitative study, using focus groups and content analysis of transcripts, was conducted in a comprehensive cancer center in Washington, DC. Seven focus groups were held: three with recently bereaved caregivers and four with active caregivers of patients with metastatic cancer and an expected survival of 6 to 12 months. RESULTS: Data were stratified into two broad categories: (1) general problems and (2) behaviors/activities that were helpful/would have been helpful in alleviating these problems. Within each of these two categories, five subcategories emerged: medical care (including provision of information, coordination of care, bedside manner, satisfaction with care), quality of life (including well-being, role adjustments), help from others (including practical assistance, social support), positives of caregiving, and unsolicited themes (including job flexibility, impact of the disease on the family, informational needs, relationship with patient). SIGNIFICANCE OF RESULTS: Results suggest caregivers may benefit from more information about patient prognosis and hospice, attention to quality-of-life issues, and enhanced, direct communication with clinicians. Although information of this nature is likely to be known to palliative care clinicians, the specific details and verbal insights provided by caregivers give an important voice to existing quantitative data and may provide more detailed information to assist palliative care clinicians seeking to develop interventions to meet caregiver needs during the period near the end of life.