Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time.
Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data.
Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time.
Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.
Hospital palliative care is an essential part of the COVID-19 response but data are lacking. We identified symptom burden, management, response to treatment, and outcomes for a case series of 101 in-patients with confirmed COVID-19 referred to hospital palliative care. Patients (64 male, median [IQR] age 82 [72-89] years, Elixhauser Comorbidity Index 6 [2-10], Australian-modified Karnofsky Performance Status 20 [10-20]), were most frequently referred for end of life care or symptom control. Median [IQR] days from hospital admission to referral was 4 [1-12] days. Most prevalent symptoms (n) were breathlessness (67), agitation (43), drowsiness (36), pain (23) and delirium (24). Fifty-eight patients were prescribed a subcutaneous infusion. Frequently used medicines (median-maximum dose/24h) were opioids (morphine, 10-30mg; fentanyl, 100-200mcg; alfentanil 500-1000 mcg) and midazolam (10-20mg). Infusions were assessed as at least partially effective for 40/58 patients, while 13 patients died before review. Patients spent a median [IQR] of 2 [1-4] days under the palliative care team, who made 3 [2-5] contacts across patient, family and clinicians. At March 30 2020, 75 patients had died, 13 been discharged back to team, home or hospice, and 13 continued to receive inpatient palliative care. Palliative care is an essential component to the COVID-19 response, and teams must rapidly adapt with new ways of working. Breathlessness and agitation are common but respond well to opioids and benzodiazepines. Availability of subcutaneous infusion pumps is essential. An international minimum dataset for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops.
Good symptom management in oncology is associated with improved patient and family quality of life, greater treatment compliance, and may even offer survival advantages. With population growth and aging, the proportion of patients with multiple symptoms-both related and unrelated to their cancer-is anticipated to increase, supporting calls for a more routine and integrated approach to symptom management. This article presents a summary of the literature for the use of symptom assessment tools and reviews the management of four common and distressing symptoms commonly experienced by people with advanced cancer: pain, breathlessness, nausea and vomiting, and fatigue. We also discuss the role of palliative care in supporting a holistic approach to symptom management throughout the cancer trajectory.
BACKGROUND: Pain of a moderate or severe intensity affects over half of patients with advanced cancer and remains undertreated in at least one-third of these patients.
AIM: The aim of this study was to provide a pragmatic overview of the evidence supporting the use of interventions in pain management in advanced cancer and to identify where encouraging preliminary results are demonstrated but further research is required.
DESIGN: A scoping review approach was used to examine the evidence supporting the use of guideline-recommended interventions in pain management practice.
DATA SOURCES: National or international guidelines were selected if they described pain management in adult cancer patients and were written within the last 5 years in English. The Cochrane Database of Systematic Reviews (January 2014 to January 2019) was searched for 'cancer' AND 'pain' in the title, abstract or keywords. A MEDLINE search was also made.
RESULTS: A strong opioid remains the drug of choice for treating moderate or severe pain. Bisphosphonates and radiotherapy are also effective for cancer-related bone pain. Optimal management requires a tailored approach, support for self-management and review of treatment outcomes. There is likely a role for non-pharmacological approaches. Paracetamol should not be used in patients taking a strong opioid to treat pain. Cannabis-based medicines are not recommended. Weak opioids, ketamine and lidocaine are indicated in specific situations only.
CONCLUSION: Interventions commonly recommended by guidelines are not always supported by a robust evidence base. Research is required to evaluate the efficacy of non-steroidal anti-inflammatory drugs, anti-convulsants, anti-depressants, corticosteroids, some invasive anaesthetic techniques, complementary therapies and transcutaneous electrical nerve stimulation.
BACKGROUND: Low socioeconomic position (SEP) is recognized as a risk factor for worse health outcomes. How socioeconomic factors influence end-of-life care, and the magnitude of their effect, is not understood. This review aimed to synthesise and quantify the associations between measures of SEP and use of healthcare in the last year of life.
METHODS AND FINDINGS: MEDLINE, EMBASE, PsycINFO, CINAHL, and ASSIA databases were searched without language restrictions from inception to 1 February 2019. We included empirical observational studies from high-income countries reporting an association between SEP (e.g., income, education, occupation, private medical insurance status, housing tenure, housing quality, or area-based deprivation) and place of death, plus use of acute care, specialist and nonspecialist end-of-life care, advance care planning, and quality of care in the last year of life. Methodological quality was evaluated using the Newcastle-Ottawa Quality Assessment Scale (NOS). The overall strength and direction of associations was summarised, and where sufficient comparable data were available, adjusted odds ratios (ORs) were pooled and dose-response meta-regression performed. A total of 209 studies were included (mean NOS quality score of 4.8); 112 high- to medium-quality observational studies were used in the meta-synthesis and meta-analysis (53.5% from North America, 31.0% from Europe, 8.5% from Australia, and 7.0% from Asia). Compared to people living in the least deprived neighbourhoods, people living in the most deprived neighbourhoods were more likely to die in hospital versus home (OR 1.30, 95% CI 1.23-1.38, p < 0.001), to receive acute hospital-based care in the last 3 months of life (OR 1.16, 95% CI 1.08-1.25, p < 0.001), and to not receive specialist palliative care (OR 1.13, 95% CI 1.07-1.19, p < 0.001). For every quintile increase in area deprivation, hospital versus home death was more likely (OR 1.07, 95% CI 1.05-1.08, p < 0.001), and not receiving specialist palliative care was more likely (OR 1.03, 95% CI 1.02-1.05, p < 0.001). Compared to the most educated (qualifications or years of education completed), the least educated people were more likely to not receive specialist palliative care (OR 1.26, 95% CI 1.07-1.49, p = 0.005). The observational nature of the studies included and the focus on high-income countries limit the conclusions of this review.
CONCLUSIONS: In high-income countries, low SEP is a risk factor for hospital death as well as other indicators of potentially poor-quality end-of-life care, with evidence of a dose response indicating that inequality persists across the social stratum. These findings should stimulate widespread efforts to reduce socioeconomic inequality towards the end of life.
Policy Points: We identified two overarching classifications of integrated geriatric and palliative care to maximize older people's quality of life at the end of life. Both are oriented to person-centered care, but with differing emphasis on either function or symptoms and concerns. Policymakers should both improve access to palliative care beyond just the last months of life and increase geriatric care provision to maintain and optimize function. This would ensure that continuity and coordination for potentially complex care needs across the continuum of late life would be maintained, where the demarcation of boundaries between healthy aging and healthy dying become increasingly blurred. Our findings highlight the urgent need for health system change to improve end-of-life care as part of universal health coverage. The use of health services should be informed by the likelihood of benefits and intended outcomes rather than on prognosis.
CONTEXT: In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide.
METHODS: We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively.
RESULTS: Of the 2,238 reviews identified, we included 72, with 20 reporting meta-analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person-centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta-analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well-being. Economic analysis and its implications were poorly considered.
CONCLUSIONS: Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.
Background: Holistic breathlessness services have been developed for people with advanced disease and chronic breathlessness, leading to improved psychological aspects of breathlessness and health. The extent to which patient characteristics influence outcomes is unclear.
Aim: To identify patient characteristics predicting outcomes of mastery and distress due to breathlessness following holistic breathlessness services.
Design: Secondary analysis of pooled individual patient data from three clinical trials. Our primary analysis assessed predictors of clinically important improvements in Chronic Respiratory Questionnaire mastery scores (+0.5 point), and our secondary analysis predictors of improvements in Numerical Rating Scale distress due to breathlessness (-1 point). Variables significantly related to improvement in univariate models were considered in separate backwards stepwise logistic regression models.
Participants: The dataset comprised 259 participants (118 female; mean (standard deviation) age 69.2 (10.6) years) with primary diagnoses of chronic obstructive pulmonary disease (49.8%), cancer (34.7%) and interstitial lung disease (10.4%).
Results: Controlling for age, sex and trial, baseline mastery remained the only significant independent predictor of improvement in mastery (odds ratio 0.57, 95% confidence intervals 0.43–0.74; p < 0.001), and baseline distress remained the only significant predictor of improvement in distress (odds ratio 1.64; 95% confidence intervals 1.35–2.03; p < 0.001). Baseline lung function, breathlessness severity, health status, mild anxiety and depression, and diagnosis did not predict outcomes.
Conclusions: Outcomes of mastery and distress following holistic breathlessness services are influenced by baseline scores for these variables, and not by diagnosis, lung function or health status. Stratifying patients by levels of mastery and/or distress due to breathlessness appears appropriate for clinical trials and services.
Context: Symptom management is a priority area within palliative care core competencies for generalist providers. While several educational initiatives exist, a comprehensive evidence synthesis on the effectiveness of symptom management training on trainees’ learning and patient-reported outcomes is lacking.
Objectives: To determine the effectiveness of training in symptom management in palliative care providers in non-palliative specialities.
Methods: A systematic review following Best Evidence Medical Education (BEME) methods from searches of MEDLINE, EMBASE, ERIC, CINAHL, PsycINFO, Cochrane database of systematic, Clinical Trials.gov and ISRCTN databases to September 2017. Prospective controlled studies testing the impact of symptom management educational interventions on physicians in training in non-palliative specialities were included. Data were summarised narratively, grouped by curriculum description, and effectiveness on trainees’ learning or patient-reported outcomes.
Results: Of 5062 records identified, 6 studies met the inclusion criteria: two randomised controlled trials and four quasi-experimental. Pain management, use of opioids and their side effects were most frequently covered. Clinical decision support tools, web-based teaching, palliative care rotation and mixed educational methods were used. Most studies used self-reported, original or modified evaluation instruments, though psychometric properties were seldom reported. Despite methodological considerations, all educational methods improved trainees' learning outcomes. However, the effects on trainees’ behaviour and patient-related outcomes were not evaluated.
Conclusion: Current educational training programmes in symptom management appear to improve trainees' comfort, preparedness, and knowledge in assessing and managing patients’ symptoms at the end of life. More rigorous research to evaluate the impact of this training on residents and organisational performance is now required.
BACKGROUND: Breathlessness remains a common and distressing symptom in people with advanced disease with few effective treatment options. Repurposing of existing medicines has been effective in other areas of palliative care, for example, antidepressants to treat pain, and offers an opportunity to deliver improved symptom control in a timely manner. Previous case series have shown reduced breathlessness following the use of sertraline (a selective serotonin reuptake inhibitor) in people with chronic obstructive pulmonary disease.
CASES: Six cases where mirtazapine, a noradrenergic and specific serotonergic antidepressant, was used to treat chronic breathlessness in advanced lung disease. Case management: All cases received mirtazapine at a starting dose of 15 mg, prescribed under the care of their primary care physician. Cases had been receiving mirtazapine for a variable time period (2 weeks to 5 months) at the time of the interviews. Case outcome: All cases reported less breathlessness and being able to do more. They described feeling more in control of their breathing, and being able to recover more quickly from episodes of breathlessness. Some cases also reported beneficial effects on anxiety, panic, appetite and sleep. No adverse effects were reported.
DISCUSSION: Patients with chronic breathlessness in this case series reported benefits during mirtazapine treatment. To determine the effectiveness of mirtazapine in alleviating breathlessness and improving quality of life in chronic lung disease, blinded randomised trials are warranted.
Cancer cachexia is a multifactorial syndrome characterised by an ongoing loss of skeletal muscle mass that cannot be fully reversed by conventional nutritional support alone. Cachexia has a high prevalence in cancer and a major impact on patient physical function, morbidity and mortality. Despite the consequences of cachexia, there is no licensed treatment for cachexia and no accepted standard of care. It has been argued that the multifactorial genesis of cachexia lends itself to therapeutic targeting through a multimodal treatment. Following a successful phase II trial, a phase III randomised controlled trial of a multimodal cachexia intervention is under way. Termed the MENAC trial (Multimodal-Exercise, Nutrition and Anti-inflammatory medication for Cachexia), this intervention is based on evidence to date and consists of non-steroidal anti-inflammatory drugs and eicosapentaenoic acid to reduce inflammation, a physical exercise programme using resistance and aerobic training to increase anabolism, as well as dietary counselling and oral nutritional supplements to promote energy and protein balance. Herein we describe the development of this trial.
TRIAL REGISTRATION NUMBER: NCT02330926.
Background: Patients with advanced cancer frequently experience functional impairment and reduced quality of life. Therapeutic exercise can provide benefit and be made accessible through the use of tailored programmes. Most studies examining exercise programmes for people with advanced cancer have used quantitative outcome measures and focussed on objective physical function, therefore offer a limited perspective on the experience of exercise participation.Methods: This qualitative study explored patients' experiences of an exercise programme within a palliative care setting. The interviews focussed on the perceived impact on all aspects of quality of life.Results: Nine people with advanced cancer, attending a hospice-based exercise programme, completed a one-to-one interview with a senior physiotherapist to explore the physical, emotional, and social impacts of their participation. Interviews were audiotaped, transcribed verbatim and analysed using interpretive phenomenological analysis. Patients reported an awareness of the positive physical, psychological, and social consequences of exercising. Their experiences reflected on all dimensions of quality of life, the impact of others and the sense of meaning gained through participation in exercise.Conclusion: Our findings highlight that exercise in palliative care should not be viewed solely a physical intervention, but one that has potential to enhance many aspects of patients' quality of life.
People with advanced chronic obstructive pulmonary disease (COPD) have distressing physical and psychological symptoms, often have limited understanding of their disease, and infrequently discuss end-of-life issues in routine clinical care. These are strong indicators for expert multidisciplinary palliative care, which incorporates assessment and management of symptoms and concerns, patient and caregiver education, and sensitive communication to elicit preferences for care towards the end of life. The unpredictable course of COPD and the difficulty of predicting survival are barriers to timely referral and receipt of palliative care. Early integration of palliative care with respiratory, primary care, and rehabilitation services, with referral on the basis of the complexity of symptoms and concerns, rather than prognosis, can improve patient and caregiver outcomes. Models of integrated working in COPD could include: services triggered by troublesome symptoms such as refractory breathlessness; short-term palliative care; and, in settings with limited access to palliative care, consultation only in specific circumstances or for the most complex patients.
Objectives: To identify factors associated with end-of-life (EoL) transition from usual place of care to the hospital as place of death for people aged 75 and older.
Design: Population-based mortality follow-back survey.
Setting: Deaths over 6 months in 2012 in two unitary authorities in England covering 800 square miles with more than 1 million residents.
Participants: A random sample of people aged 75 and older who died in a care home or hospital and all those who died at home or in a hospice unit (N = 882). Cases were identified from death registrations. The person who registered the death (a relative for 98.9%) completed the survey.
Measurements: The main outcome was EoL transition to the hospital as place of death versus no EoL transition to the hospital. Multivariable modified Poisson regression was used to examine factors (illness, demographic, environmental) related to EoL transition to the hospital.
Results: Four hundred forty-three (50.2%) individuals responded, describing the care of the people who died. Most died from nonmalignant conditions (76.3%) at a mean age of 87.4 ± 6.4. One hundred forty-six (32.3%) transitioned to the hospital and died there. Transition was more likely for individuals with respiratory disease than for those with cancer (prevalence ratio (PR) = 2.07, 95% confidence interval (CI) = 1.42-3.01) and for people with severe breathlessness (PR = 1.96, 95% CI = 1.12-3.43). Transition was less likely if EoL preferences had been discussed with a healthcare professional (PR = 0.60, 95% CI = 0.42-0.88) and when there was a key healthcare professional (PR = 0.74, 95% CI = 0.58-0.95).
Conclusion: To reduce EoL transition to the hospital for older people, there needs to be improved management of breathlessness in the community and better access to a key healthcare professional skilled in coordinating care, communication, facilitating complex discussions, and in planning for future care.
Les auteurs décrivent les impressions des patients et l'impact d'un programme d'exercie physique en ambulatoire de 9 séances. Ce programme est une voie pour offrir une activité physique à des patients gravement malades. Malgré un excellent retour, seule la moitié des patients ont complété ce programme dans son intégralité et la preuve de son bénéfice est limitée.