BMC Palliative Care - Latest Articles

Is the effect of non-invasive ventilation on survival in amyotrophic lateral sclerosis age-dependent? retrospective cohort study

Waltteri Siirala — 2013-05-24T00:00:00Z

Background: Hypoventilation due to respiratory muscle atrophy is the most common cause of death as a result of amyotrophic lateral sclerosis (ALS). Patients aged over 65 years and presenting bulbar symptoms are likely to have a poorer prognosis. The aim of the study was to assess the possible impact of age and treatment with non-invasive ventilation (NIV) on survival in ALS. Based on evidence from earlier studies, it was hypothesized that NIV increases rates of survival regardless of age. Methods: Eighty-four patients diagnosed with ALS were followed up on from January 2001 to June 2012. These patients were retrospectively divided into two groups according to their age at the time of diagnosis: Group 1 comprised patients aged <= 65 years while Group 2 comprised those aged > 65 years. Each group included 42 patients. NIV was tolerated by 23 patients in Group 1 and 18 patients in Group 2. Survival was measured in months from the date of diagnosis. Results: The median age in Group 1 was 59 years (range 49 -- 65) and 76 years in Group 2 (range 66 -- 85). Among patients in Group 1 there was no difference in probability of survival between the NIV users and non-users (Hazard Ratio = 0.88, 95% CI 0.44 -- 1.77, p = 0.7). NIV users in Group 2 survived longer than those following conventional treatment (Hazard Ratio = 0.25, CI 95% 0.11 -- 0.55, p <0.001). ALS patients in Group 2 who did not use NIV had a 4-fold higher risk for death compared with NIV users. Conclusions: This retrospective study found that NIV use was associated with improved survival outcomes in ALS patients older than 65 years. Further studies in larger patient populations are warranted to determine which factors modify survival outcomes in ALS.

Home-based functional walking program for advanced cancer patients receiving palliative care: a case series

Sonya Lowe — 2013-05-11T00:00:00Z

Background: Although meta-analyses have demonstrated that physical activity can positively impact quality of life outcomes in early stage cancer patients, it is not yet known whether these benefits can be extended to patients with advanced cancer. In a previous pilot survey of patients with advanced cancer with a median survival of 104 days, participants felt willing and able to participate in a physical activity intervention, and reported a strong preference for walking and home-based programming. Here, we report on the initial development and feasibility of a home-based functional walking program in patients with advanced cancer receiving palliative care. Methods: Nine adult patients were recruited from outpatient palliative care clinics and palliative home care. A pilot intervention trial was conducted over a 6-week period. The McGill Quality of Life Questionnaire (MQOL), Late Life Function and Disability Instrument (LLFDI), Edmonton Symptom Assessment System (ESAS), Seniors Fitness Test, four-test balance scale, and grip strength, were performed pre- and post-intervention. Participants wore activPAL™ accelerometers to monitor ambulatory activity levels. Results: Of the nine recruited participants, three participants dropped out prior to baseline testing due to hospital admission and feeling overwhelmed, and three participants dropped out during the intervention due to severe symptoms. Only three participants completed the intervention program, pre- and post-intervention assessments: two reported improvements in total MQOL scores, yet all three shared an overall trend towards worsening symptom and total fatigue scores post-intervention. Two participants passed away within 90 days of completing the intervention. Conclusions: This case series demonstrates the challenges of a physical activity intervention in patients with advanced cancer receiving palliative care. Further feasibility research is required in this patient population.Trial registrationThis study is registered under ClinicalTrials.gov as NCT00438620.

Dysphagia as a predictor of outcome and transition to palliative care among middle cerebral artery ischemic stroke patients

Christa San Luis — 2013-05-10T00:00:00Z

Background: Middle Cerebral Artery (MCA) territory strokes can be disabling and may leave patients unable to swallow safely. Decisions regarding artificial nutrition and goals of care often arise in patients with severe strokes leading to dysphagia. This study determined some predictors of early transition to palliative level of care among patients with acute ischemic MCA stroke with dysphagia. Methods: This is a retrospective cohort study. Demographic and clinical data of patients presenting to Hartford Hospital with an acute ischemic stroke between January 2005-December 2010 were gathered utilizing the Stroke Center at Hartford Hospital Database. The 236 patients included were divided into "early transition" and "not transitioned" to palliative care cohorts. Primary outcome was transition to palliative care. Factors that were significantly associated with an early transition to palliative level of care in univariate analysis were then entered into a multivariate logistic regression analysis to identify potential independent predictors of early transition to palliative level of care. The significance level was set at p < 0.05. Results: 79 patients (34%) were transitioned to palliative level of care after failing the first swallow evaluation within a median of 3 days. Factors predictive of an early transition to palliative level of care after multivariate logistic regression analysis included advancing age (p < 0.001; OR: 1.10; 95% CI :1.056-1.155) , left MCA infarct (p = 0.039; OR: 0.417; 95% CI:0.182-0.956), a high NIHSS score on admission (p = 0.017; OR: 3.038; 95% CI: 1.22-7.555), administration of intra-arterial tPA (p < 0.001; OR: 7.106; 955 CI 2.541-19.873) and the inability to be assessed on the 1st swallow evaluation (p < 0.001; OR 0.053; 95% CI 0.022-0.131). Conclusions: The severity of dysphagia influences early transition to palliative level of care in acute stroke patients. Independent predictors of an early transition to palliative level of care among patients with an acute MCA territory stroke and dysphagia included advancing age, a left MCA infarct, a high NIHSS score on admission, administration of intra-arterial tPA and the inability to be assessed on the 1st swallow evaluation. This information may guide discussions with families of patients with MCA territory strokes regarding artificial nutrition and goals of care.

The development of an instrument that can identify children with palliative care needs: the Paediatric Palliative Screening Scale (PaPaS Scale): a qualitative study approach

Eva Bergstraesser — 2013-05-08T00:00:00Z

Background: The introduction of paediatric palliative care and referral to specialised teams still occurs late in the illness trajectory of children with life-limiting diseases. The aim of this ongoing multipart study was to develop a screening instrument for paediatricians that would improve the timely identification of children who could benefit from a palliative care approach. Methods: We used a qualitative study approach with semi-structured interviews (Part 1) and a focus group discussion (Part 2) to define the domains and items of the screening instrument. Seven international paediatric palliative care experts from the UK, France, USA, and Canada took part in face-to-face interviews, and eleven paediatric health professionals from the University Children’s Hospital, Zurich, participated in a subsequent focus group discussion. Results: This preliminary phase of development and validation of the instrument revealed five domains relevant to identifying children with life-limiting diseases, who could benefit from palliative care: 1) trajectory of disease and impact on daily activities of the child; 2) expected outcome of disease-directed treatment and burden of treatment; 3) symptom and problem burden; 4) preferences of patient, parents or healthcare professional; and 5) estimated life expectancy. Where palliative care seems to be necessary, it would be introduced in a stepwise or graduated manner. Conclusions: This study is a preliminary report of the development of an instrument to facilitate timely introduction of palliative care in the illness trajectory of a severely ill child. The instrument demonstrated early validity and was evaluated as being a valuable approach towards effective paediatric palliative care.

Determinants of place of death: a population-based retrospective cohort study

Jyothi Jayaraman — 2013-05-01T00:00:00Z

Background: As Canada’s population ages, the location of end of life care (whether at home, extended care facility or hospital) may change depending on the location of death. We carried out a study to identify determinants of the place of death. Methods: Data on deaths in British Columbia between 2004 and 2008 were obtained from the Vital Statistics Agency. Place of death was categorized into home, extended care facility, hospital or other. Logistic regression analyses were used to estimate the effects of age, sex, marital status, residence, place of birth and cause of death on place of death using adjusted odds ratios and 95% confidence intervals (95% CI). Results: Of the 153,111 deaths in the study, 16.5% occurred at home, 29.0% in extended care, 51.0% in hospital and 3.5% occurred elsewhere. Male deaths were less likely to occur in extended care as compared with female deaths (odds ratio 0.73, 95% CI 0.71–0.75). Age (odds ratio 3.31, 95% CI 3.19–3.45 for those for ≥90 vs 70–79 years), marital status (odds ratio 1.42, 95% CI 1.38–1.47 widowed vs married), residence (odds ratio 0.80, 95% CI 0.76–0.83 rural vs Vancouver), place of birth (odds ratio 0.80, 95% CI 0.75–0.86 China vs Canada) and cause of death (odds ratio 3.91, 95% CI 3.69–4.13 dementia vs cancer) were also associated with death in extended care. Conclusions: Information on determinants of place of death can inform public health policy regarding care at the end of life and make resource allocation more efficient.

BMC Palliative Care reviewer acknowledgement, 2012

Hayley Henderson — 2013-04-25T00:00:00Z

Contributing reviewersThe editors of BMC Palliative Care would like to thank all our reviewers who have contributed to the journal in Volume 11 (2012).

Evidence-based planning and costing palliative care services for children: novel multi-method epidemiological and economic exemplar

Jane Noyes — 2013-04-25T00:00:00Z

Background: Children’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. Methods: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. Results: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). Conclusions: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings.

Using aggregated single patient (N-of-1) trials to determine the effectiveness of psychostimulants to reduce fatigue in advanced cancer patients: a rationale and protocol

Hugh Senior — 2013-04-23T00:00:00Z

Background: It is estimated that 29% of deaths in Australia are caused by malignant disease each year and can be expected to increase with population ageing. In advanced cancer, the prevalence of fatigue is high at 70–90%, and can be related to the disease and/or the treatment. The negative impact of fatigue on function (physical, mental, social and spiritual) and quality of life is substantial for many palliative patients as well as their families/carers.Method/designThis paper describes the design of single patient trials (n-of-1 s or SPTs) of a psychostimulant, methylphenidate hydrochloride (MPH) (5 mg bd), compared to placebo as a treatment for fatigue, with a population estimate of the benefit by the aggregation of multiple SPTs. Forty patients who have advanced cancer will be enrolled through specialist palliative care services in Australia. Patients will complete up to 3 cycles of treatment. Each cycle is 6 days long and has 3 days treatment and 3 days placebo. The order of treatment and placebo is randomly allocated for each cycle. The primary outcome is a reduction in fatigue severity as measured by the Functional Assessment of Cancer Therapy-fatigue subscale (FACIT-F). Secondary outcomes include adverse events, quality of life, additional fatigue assessments, depression and Australian Karnovsky Performance Scale.DiscussionThis study will provide high-level evidence using a novel methodological approach about the effectiveness of psychostimulants for cancer-related fatigue. If effective, the findings will guide clinical practice in reducing this prevalent condition to improve function and quality of life.Trial registrationAustralian New Zealand Clinical Trials Registry ACTRN12609000794202

Palliative care need and management in the acute hospital setting: a census of one New Zealand Hospital

Merryn Gott — 2013-03-28T00:00:00Z

Background: Improving palliative care management in acute hospital settings has been identified as a priority internationally. The aim of this study was to establish the proportion of inpatients within one acute hospital in New Zealand who meet prognostic criteria for palliative care need and explore key aspects of their management. Methods: A prospective survey of adult hospital inpatients (n = 501) was undertaken. Case notes were examined for evidence that the patient might be in their last year of life according to Gold Standards Framework (GSF) prognostic indicator criteria. For patients who met GSF criteria, clinical and socio-demographic information were recorded. Results: Ninety-nine inpatients met GSF criteria, representing 19.8% of the total census population. The patients’ average age was 70 years; 47% had a primary diagnosis of cancer. Two thirds had died within 6 months of their admission. Seventy-eight of the 99 cases demonstrated evidence that a palliative approach to care had been adopted; however documentation of discussion about goals of care was very limited and only one patient had evidence of an advance care plan. Conclusion: One fifth of hospital inpatients met criteria for palliative care need, the majority of whom were aged >70 years. Whilst over three quarters were concluded to be receiving care in line with a palliative care approach, very little documented evidence of discussion with patients and families regarding end of life issues was evident. Future research needs to explore how best to support ‘generalist’ palliative care providers in initiating, and appropriately recording, such discussions.

Factors associated with place of death in Addis Ababa, Ethiopia

Aderaw Anteneh — 2013-03-26T00:00:00Z

Background: Dying at home is highly prevalent in Africa partly due to lack of accessibility of modern health services. In turn, limited infrastructure and health care deliveries in Africa complicate access to health services. A weak infrastructure and limited health facilities with lower quality in Ethiopia resulted poor health service utilization and coverage, high morbidity and mortality rates. We examined whether people in Addis Ababa died in health facilities and investigated the basic factors associated with place of death. Methods: We used verbal autopsy data of 4,776 adults (age>14 years) for the years 2006–2010 from the Addis Ababa Mortality Surveillance Program (AAMSP). The main data source of AAMSP is the burial surveillance from all cemeteries in Addis Ababa. We provide descriptive statistics of place of adult deaths and discussed their covariates using multivariate analyses. Results: Only 28.7% died at health facilities, while the remaining died out of health facilities. There was an increase trend in the proportion of health facility deaths from 25.3% in 2006 to 32.5% in 2010. The risk of health facility death versus out of health facility deaths decreased with age. Compared with those who had no education educated people were more likely to die at health facilities. The chance of in health facility death was a little higher for females than males while religion, occupational status and ethnicity of the deceased had no any significance difference in place of death. Conclusion: Both demographic and social factors determine where adults will die in Addis Ababa, Ethiopia. The majority of people in Addis Ababa died out of health facilities. The health system should also give special attention to the emerging non communicable diseases like cancer for effective treatment of patients.