Background: For most people, the last 12 months of life are spent living in the community, with the support of family and friends for a number of caregiving functions. Previous research has found that managing medicines is challenging for caregivers. Currently there is little information describing which caregivers may struggle with tasks associated with managing a loved one's medicines.
Aim: The aim of this study was to identify factors that flag caregivers who are likely to experience problems when managing someone else's medications.
Setting/Participants: The annual South Australian Health Omnibus Survey provides a face-to-face, cross-sectional, whole-of-population view of health care. Structured interviews, including questions covering palliative care and end-of-life care, were conducted with 14,625 residents in their own homes.
Results: Of the 1068 respondents who had provided care for someone who died of a terminal illness in the last five years, 7.4% identified that additional support with medicine management would have been beneficial. In addition, three factors were predictive of the need for additional support in managing medicines: aged <65 years; lower household income; and living in a metropolitan region.
Conclusion: The findings of this study provide insights to inform the development of palliative care service models to support informal caregivers in the management of medications for people with a life-limiting illness.
Pain in people with advanced cancer is prevalent. When a stable dose of opioids is established, people still experience episodic breakthrough pain for which dosing of an immediate release opioid is usually a proportion of the total daily dose. This multi-site, double blind, randomised trial tested three dose proportions (1/6, 1/8, 1/12 of total daily dose) in two blocks, each block with three dose proportions in random order (6 numbered bottles in total). When participants required opioid breakthrough doses and it was their first breakthrough dose for that study day, they took the next numbered bottle rather than their usual breakthrough dose. (Subsequent doses on that day reverted to their usual dose.) Eighty five people were randomised in this study of whom 81 took at least one dose and 73 (90%) took at least block one (one of each dose proportion). No dose was found to be optimal at 30 min with approximately one third of participants showing maximal reduction with each dose proportion. Median time to pain relief was 120 min. There were no differences in harms: drowsiness, confusion, nausea or vomiting at 30, 60 or 120 min. This adequately powered study did not show any difference with three dose proportions for reduction in pain intensity, time to pain relief, pain control on the subsequent day nor any difference in harms. From first principles, this suggests 1/12 the 24 hourly dose should be used as the lowest dose that delivers benefit. Future studies should include a placebo arm.
BACKGROUND: Some patients do not receive adequate pain and symptom relief at the end of life, causing distress to patients, families and healthcare professionals. It is unclear whether undertreatment of symptoms occurs, in part, because of nurses' concerns about legal and/or disciplinary repercussions if the patient dies after medication is administered.
AIM: The aim was to explore nurses' experiences and knowledge of the law relating to the provision of end-of-life pain and symptom relief.
DESIGN: Semi-structured interviews with nurses were assessed using a six-stage hybrid thematic analysis technique.
SETTING/PARTICIPANTS: Four face-to-face and 21 telephone interviews were conducted with nurses who routinely prescribed and/or administered pain and symptom relief to patients approaching the end of their lives in Queensland and New South Wales, Australia.
RESULTS: While many nurses had no personal experiences with legal or professional repercussions after a patient had died, the fear of hastening death and being held accountable was frequently discussed and regarded as relevant to the provision of inadequate pain and symptom relief. Concerns included potential civil or criminal liability and losing one's job, registration or reputation. Two-thirds of participants believed that pain relief was sometimes withheld because of these legal concerns. Less than half of the interviewed nurses demonstrated knowledge of the doctrine of double effect, the legal protection for health professionals who provide end-of-life pain and symptom relief.
CONCLUSION: Education is urgently required to strengthen nurses' knowledge of the legal protections supporting the provision of appropriate palliative medication, thereby improving their clinical practice with end-of-life patients.
Patient-defined factors that are important at the end of life include being physically independent for as long as possible, good symptom control, and spending quality time with friends and family. Hospice care adds to the quality of care and these patient-centered priorities for people with cancer and their families in the last weeks and days of life. Evidence from large observational studies demonstrate that hospice care can improve outcomes directly and support better and more appropriate health care use for people in the last stages of cancer. Team-based community hospice care has measurable benefits for patients, their family caregivers, and health services. In addition to improved symptom control for patients and a greater likelihood of time spent at home, caregiver outcomes are better when hospice care is accessed: informational needs are better met, and caregivers have an improved ability to move on with life after the patient's death compared with people who did not have access to these services. Hospice care continues to evolve as its reach expands and the needs of patients continue to broaden. This is reflected in the transition from hospice being based on excellence in nursing to teams with a broad range of health professionals to meet the complex and changing needs of patients and their families. Additional integration of cancer services with hospice care will help to provide more seamless care for patients and supporting family caregivers during their caregiving and after the death of the patient.
Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.
Background: The palliative care population is prescribed a large number of drugs, increasing as patients deteriorate. The cumulative effects of these medications combined with underlying symptom burden can result in significant morbidity. There is an urgent need to describe possible symptomatic events that could be exacerbated by commonly prescribed drugs in palliative care and their impact.
Objectives: To trial the feasibility and acceptability of determining baseline symptomatic event rates for community palliative care patients from which a composite measure of symptomatic events can be developed.
Design: This prospective pilot study of patient-reported symptomatic events recruited a convenience cohort of 27 community palliative care patients in a metropolitan specialist palliative care service in Australia.
Results: This study has demonstrated a high prevalence rate of symptomatic events (total crude event/participant day rate 0.87) in the study population.
Conclusion: Data collection of patient-centered symptomatic events was acceptable and feasible to participants. This pilot supports a fully powered study.
Background: Pharmacovigilance studies in hospice/palliative care provide extra information to improve medication safety. Combination controlled release oxycodone-naloxone offers an alternative opioid with less risk of opioid-induced constipation.
Objective: To examine why palliative care clinicians chose to cease oxycodone-naloxone and to explore immediate and short-term benefits and harms of this medication change.
Design: A consecutive cohort study.
Setting: 112 adults from 13 palliative care centers.
Measurements: Reasons for ceasing medication and the harms and benefits that followed this 24 and 72 hours later. Symptom burdens were summarised by the National Cancer Institute Common Terminology Criteria for Adverse Events Toxicity Gradings.
Results: Combination medication was most commonly ceased because of poor pain control or impaired hepatic function. The last median oral morphine equivalent oxycodone dose before the switch was 45 mg (range 7.5–240 mg) with 76 switched to an alternative long-acting opioid (initial median oral morphine equivalent dose being 45 mg [range 5–210 mg]). Subgroup analysis of those switched because of clinicians' concerns about hepatic dysfunction demonstrated this group were receiving significantly lower opioid doses pre-cessation compared to those switched because of other reasons( p = 0.007). Regardless of why the medication was changed, improvements in pain and constipation scores were seen, the latter associated with an attendant increase in laxatives.
Conclusions: This preliminary work suggests that despite theoretical concerns regarding the effect of the naloxone on opioid doses, most people were switched safely to very similar opioid doses with attendant improvements in pain control.
Background: In health care, clinical effectiveness involves evaluating the degree to which clinical interventions achieve beneficial patient and caregiver outcomes.
Objective: To evaluate the clinical effectiveness of care in a specialist palliative care unit (SPCU) in Ireland, including an analysis of the temporal relationship among admission, Phase of Illness and patient and family distress.
Design/Measurements: A consecutive case series with prospectively collected admission data (n = 400). Using a casemix tool (Phase of Illness), pain, other symptoms, psychological and family distress, and performance status were documented on admission and then daily by medical staff.
Results: Three hundred forty-two (85%) patients had complete data recorded on day 1. After admission, there were linear correlations between days since admission and progressive improvements in pain (Cramer's V = 0.131, p < 0.001), other symptoms (V = 0.206, p < 0.001), psychological distress (V = 0.101, p < 0.001), and family distress (V = 0.124, p < 0.001). Forty-three percent were in an unstable phase on admission. Nearly two thirds (60.7%) of these unstable patients converted to a stable phase within 48 hours of admission. Over the first 72 hours, 70.7% of unstable patients converted to a stable phase. There was also a significant correlation between phase stabilization and pain and symptom control (p = 0.007). Stable phase over the first 4 days and first 14 days was associated with significantly higher performance status.
Conclusion: This study demonstrates the significant clinical effectiveness of SPCU admission across the different aspects of patient and family care.
Background: The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty.
Methods: A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty.
Results: Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients' clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P < .0001), greater breathing problems (P < .05) and pain (P < .05), and higher functional status (P < .001) at the beginning of care.
Conclusions: Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.
Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications.
Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis.
Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex.
Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included.
Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts.
Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.
INTRODUCTION: Minimising bias in randomised controlled trials (RCTs) includes intention-to-treat (ITT) analyses. Hospice/palliative care RCTs are constrained by high attrition unpredictable when consenting, including withdrawals between randomisation and first exposure to the intervention. Such withdrawals may systematically bias findings away from the new intervention being evaluated if they are considered non-responders. This study aimed to quantify this impact within ITT principles.
METHODS: A theoretical model was developed to assess the impact of withdrawals between randomisation and first exposure on i) study power and ii) effect sizes. Ten reported hospice/palliative care studies had power recalculated accounting for such withdrawal.
RESULTS: In the theoretical model, when 5% of withdrawals occurred between randomisation and first exposure to the intervention, change in power was demonstrated in binary outcomes (2.0-2.2%), continuous outcomes (0.8-2.0%) and time-to-event outcomes (1.6-2.0%), and odds ratios were changed by 0.06-0.17. Greater power loss was observed with larger effect sizes. Withdrawal rates were 0.9%-10% in the ten reported RCTs, corresponding to power losses of 0.1%-2.2%. For studies with binary outcomes, withdrawal rates were 0.3-1.2%, changing odds ratios by 0.01-0.22.
DISCUSSION: If blinding is maintained and all interventions are available simultaneously, our model suggests that excluding data from withdrawals between randomisation and first exposure to the intervention minimises one bias. This is the safety population as defined by the International Committee on Harmonisation. When planning for future trials, minimising the time between randomisation and first exposure to the intervention will minimise the problem. Power should be calculated on people who receive the intervention.
Introduction: Bereavement support is an integral element of palliative care. Emerging evidence stipulates that bereavement support should be reserved for those most at risk of poor outcomes. While this evidence makes identifying those at risk of experiencing a complex bereavement a necessary first step, it has been difficult to arrive at a consensus as to whom that should be.
Aim: To explore whether palliative care in-patients with advanced disease are concerned about the bereavement needs of others and, if so, is it their next-of-kin.
Design: A qualitative study using semi-structured interviews, and thematic analysis using a constant comparative method.
Setting/participants: Patients identified by their physicians as being aware of their limited prognosis (n = 19) in a specialist palliative care service in Sydney, Australia.
Findings: Three key themes emerged: 1) Families considered close and supportive may not require bereavement follow-up; 2) Families with previous significant losses or who have more complex lives are perceived by patients as having greater risk; and 3) Asking palliative care patients about whom they are most concerned in their network after their death is difficult but possible.
Conclusions: There are potentially people in the palliative patients’ networks who may be in need of bereavement support, but who are unlikely to be informed about available bereavement services. New strategies are needed to identify people who may benefit from bereavement support.
OBJECTIVES: The experience of caregiving may affect carers' well-being into bereavement. We explored associations between mental well-being and previous experience of bereavement of, and caring for, someone close at the end-of-life.
METHODS: An end-of-life set of questions was included in population-based household survey administered to adults (age 16 years and above). We used univariable regression to explore the cross-sectional relationship between our primary outcome (Warwick-Edinburgh Mental Well-being Scale (WEMWBS)) and possible explanatory variables: sociodemographic; death and bereavement including ability to continue with their life; disease and carer characteristics; service use and caregiving experience.
RESULTS: The analysis dataset included 7606 of whom 5849 (77%) were not bereaved, 1174 (15%) were bereaved but provided no care and 583 (8%) were bereaved carers. WEMWBS was lower in the oldest age class (85 years and above) in both bereaved groups compared with not bereaved (p<0.001). The worst WEMWBS scores were seen in the 'bereaved but no care' group who had bad/very bad health self-assessed general health (39.8 (10.1)) vs 41.6 (9.5)) in those not bereaved and 46.4 (10.7) in bereaved carers. Among the bereaved groups, those who would not be willing to care again had lower WEMWBS scores than those who would (48.3 (8.3) vs 51.4 (8.4), p=0.024).
CONCLUSION: Mental well-being in bereavement was worse in people with self-reported poor/very poor general health and those with a worse caregiving experience. Although causality cannot be assumed, interventions to help people with worse mental and physical health to care, so that their experience is as positive as possible, should be explored prospectively.
Objectives: Methotrimeprazine is commonly used for the management of nausea but never tested formally against other drugs used in this setting. The aim was to demonstrate superior antiemetic efficacy.
Design: Double-blind, randomised, controlled trial of methotrimeprazine versus haloperidol.
Setting 11 palliative care sites in Australia.
Participants: Participants were >18 years, had cancer, an average nausea score of =3/10 and able to tolerate oral medications. Ineligible patients had acute nausea related to treatment, nausea for which a specific antiemetic was indicated, were about to undergo a procedure or had received either of the study drugs or a change in glucocorticoid dose within the previous 48 hours.
Interventions: Based on previous studies, haloperidol was used as the control. Participants were randomised to encapsulated methotrimeprazine 6·25 mg or haloperidol 1·5 mg one time or two times per day and assessed every 24 hours for 72 hours.
Main outcome measures: A =two-point reduction in nausea score at 72 hours from baseline. Secondary outcome measures were as follows: complete response at 72 hours (end nausea score less than 3), response at 24 and 48 hours, vomiting episodes, use of rescue antiemetics, harms and global impression of change.
Results: Response to treatment at 72 hours was 75% (44/59) in the haloperidol (H) arm and 63% (36/57) in the methotrimeprazine (M) arm with no difference between groups (intention-to-treat analysis). Complete response rates were 56% (H) and 51% (M). In the per protocol analysis, there was no difference in response rates: (85% (44/52) (H) and 74% (36/49) (M). Complete per protocol response rates were 64% (H) and 59% (M). Toxicity worse than baseline was minimal with a trend towards greater sedation in the methotrimeprazine arm.
Conclusion: This study did not demonstrate any difference in response rate between methotrimeprazine and haloperidol in the control of nausea.
Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social or spiritual nature. This document encourages the use of validated assessment tools to recognise such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person Care concept describes the inseparability of the physical, emotional and spiritual dimensions of the human being. Addressing psychological and spiritual needs, together with medical treatment, maintains personal integrity and promotes emotional healing. Most PC concerns can be addressed by the usual care team, supported by a PC specialist if needed. During dying, the persons' needs may change dynamically and intensive PC is often required. Following the death of a person, bereavement services benefit loved ones. The authors conclude that the inclusion of PC within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying.
Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life.
Aim: To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life.
Design: An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (>=7 Numerical Rating Scale 0–10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months.
Setting/participants: people living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics.
Results: A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point.
Conclusion: A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness.
Background: Diabetes is increasingly prevalent globally, including in palliative care. Guidelines vary as to the ideal glycemic goals for patients near the end of life. The relationship between hyperglycemia and attributable symptoms late in life remains ill defined.
Objective: To pilot the association between blood glucose level (BGL) and symptoms (nausea, fatigue, pain, and appetite) and mortality in palliative care patients with diabetes.
Design: This prospective observational consecutive cohort study consisted of 17 patients with diabetes admitted to an inpatient palliative care unit. Repeat measures of BGL and symptom distress scores using the patient-reported Symptom Assessment Scale (SAS) were recorded during a five-month period as was patient mortality. The association between BGL and SAS domains was assessed using negative binomial regression and the association between mortality and high versus low BGL was determined using log-rank statistics and Kaplan-Meier curves.
Results: All patients had malignancy: 15 had type 2 diabetes and 2 had steroid-induced diabetes. A total of 121 patient observation days were included in the analysis. BGL was inversely associated with patient-reported SAS for nausea (incidence rate ratio [IRR] = 0.83, 95% confidence interval [CI] = 0.70–0.99, p = 0.04), but not other symptoms. Insulin usage was also associated with decreased nausea (IRR = 0.24, 95% CI = 0.09–0.60, p = 0.002). Survival did not differ between low- and high-BGL groups.
Conclusion: These findings warrant a larger multisite consecutive cohort study and a re-exploration of current clinical practice. Ultimately, interventional trials comparing strict versus more liberal glycemic control on symptom management and survival are the ideal design to better understand differing levels of glycemic control at the end of life.
BACKGROUND: Insight into health conditions associated with death can inform healthcare policy. We aimed to cluster 27,525,663 deceased people based on the health conditions associated with death to study the associations between the health condition clusters, demographics, the recorded underlying cause and place of death.
METHODS: Data from all deaths in the United States registered between 2006 and 2016 from the National Vital Statistics System of the National Center for Health Statistics were analyzed. A self-organizing map (SOM) was used to create an ordered representation of the mortality data.
RESULTS: 16 clusters based on the health conditions associated with death were found showing significant differences in socio-demographics, place, and cause of death. Most people died at old age (73.1 (18.0) years) and had multiple health conditions. Chronic ischemic heart disease was the main cause of death. Most people died in the hospital or at home.
CONCLUSIONS: The prevalence of multiple health conditions at death requires a shift from disease-oriented towards person-centred palliative care at the end of life, including timely advance care planning. Understanding differences in population-based patterns and clusters of end-of-life experiences is an important step toward developing a strategy for implementing population-based palliative care.
BACKGROUND: Driving cessation is associated with poor health-related outcomes. People with chronic diseases are often prescribed long-term opioid agonists that have the potential to impair driving. Studies evaluating the impact of opioids on driving-related psychomotor skills report contradictory results likely due to heterogeneous designs, assessment tools and study populations. A better understanding of the effects of regular therapeutic opioid agonists on driving can help to inform the balance between individual's independence and community safety.
AIM: To identify the literature assessing the impact of regular therapeutic opioid agonists on driving-related psychomotor skills for people with chronic pain or chronic breathlessness.
DESIGN: Systematic review reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-analysis statement; PROSPERO Registration CRD42017055909.
DATA SOURCES: Six electronic databases and grey literature were systematically searched up to January, 2017. Inclusion criteria were as follows: (1) empirical studies reporting data on driving simulation, on-the-road driving tasks or driving outcomes; (2) people with chronic pain or chronic breathlessness; and (3) taking regular therapeutic opioid agonists. Critical appraisal used the National Institutes of Health's quality assessment tools.
RESULTS: From 3809 records screened, three studies matched the inclusion criteria. All reported data on people with chronic non-malignant pain. No significant impact of regular therapeutic opioid agonists on people's driving-related psychomotor skills was reported. One study reported more intense pain significantly worsened driving performance.
CONCLUSION: This systematic review does not identify impaired simulated driving performance when people take regular therapeutic opioid agonists for symptom control, although more prospective studies are needed.