The need for palliative care for patients with non-cancer diseases: a review of the evidence

Luddington, Lisa; Cox, Sarah; Higginson, Irene J; Livesley, Brian

doi:10.12968/ijpn.2001.7.5.12635

Cited by 90 publications

(69 citation statements)

References 19 publications

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“…Evolving partnerships between hospitals and hospices can facilitate an enhanced continuum of care for patients, allowing decisions around the most appropriate course of action, including the question of "the right place to die" and comfort care, to be best made. 23 Unlike adult palliative care, where nonmalignant diagnoses contribute to as few as 5% of inpatient hospice admissions and 23% of outpatient referrals, [24][25][26] our findings demonstrate that the population of children served on a PPC program present with a wide variety of conditions. This is consistent with the findings of a multicenter study describing the clinical and demographic characteristics of patients seen by 6 North American palliative care teams, where 80.2% presented with noncancer diagnoses.…”

Section: E770mentioning

confidence: 76%

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

et al. 2014

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WHAT'S KNOWN ON THIS SUBJECT: Palliative care is an increasingly important element of pediatric care for children with noncurable, terminal conditions. Freestanding hospices represent one model of care provision; however, little research on this approach has been conducted. WHAT THIS STUDY ADDS:This report documents the experience of North America' s first freestanding hospice over 15 years to better understand the characteristics of children and families enrolled and to establish baseline information for future studies and program planning. abstract OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children' s Hospice (CPCH) is North America' s first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS:A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS:The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%).CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric lifethreatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served. Pediatrics 2014;134:e765-e772 Dr Siden conceptualized and designed the study, guided the analysis, and reviewed and revised the manuscript; Ms Chavoshi drafted the initial manuscript, carried out the analysis, and finalized the manuscript; Ms Harvey was responsible for data review and entry and database management; Ms Parker reentered data and reviewed data for accuracy; Ms Miller reviewed and revised the manuscript and provided content pertaining to program description and budget; and all authors approved the final manuscript as submitted.www.pediatrics.org/cgi

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Section: E770mentioning

confidence: 76%

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

et al. 2014

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“…Comparison between COPD and cancer is relevant because cancer patients have well-established palliative care programmes. Despite having extensive and similar end-of-life (EOL) needs to cancer patients, studies report unrelieved symptoms and low referral rates to palliative care in advanced COPD patients [4].Knowledge about symptoms and symptomatic treatments near death are vital to identify healthcare inequalities, and to identify ways to improve EOL care in advanced COPD. The aim of this study was to estimate the prevalence of symptoms and their management in the last week of life in people with oxygen-dependent COPD or cancer.…”

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confidence: 99%

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confidence: 99%

“…We aimed to evaluate the PRM technique in a cohort of well-characterised, respiratory-healthy subjects with a wide age range. As smoking and ageing are both risk factors in the development of COPD [4], we hypothesised that 1) an older age is associated with more PRM . Finally, we investigated the association between PRM measurements and pulmonary function measurements.…”

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confidence: 99%

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End-of-life care in oxygen-dependent COPD and cancer: a national population-based study

et al. 2015

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Chronic obstructive pulmonary disease (COPD) is the third leading cause of mortality worldwide [1], and is associated with high morbidity and poor symptom control for long periods of time as the disease progresses [2]. At the end of life, COPD patients have a symptom burden comparable to, and often greater than, that associated with cancer [3]. Comparison between COPD and cancer is relevant because cancer patients have well-established palliative care programmes. Despite having extensive and similar end-of-life (EOL) needs to cancer patients, studies report unrelieved symptoms and low referral rates to palliative care in advanced COPD patients [4].Knowledge about symptoms and symptomatic treatments near death are vital to identify healthcare inequalities, and to identify ways to improve EOL care in advanced COPD. The aim of this study was to estimate the prevalence of symptoms and their management in the last week of life in people with oxygen-dependent COPD or cancer.This was a nationwide, registry-based cohort study including all patients starting long-term oxygen therapy (LTOT) for physician-diagnosed COPD in the national Swedevox register who died between January 1, 2011 and October 14, 2013. The Swedevox register prospectively includes patients starting LTOT in Sweden with a population-based coverage of ∼85% [5]. Details of the register are described elsewhere [6].Data on people with oxygen-dependent COPD were cross-linked using each patient's unique Swedish identification number with data in the Swedish Register of Palliative Care (SRPC). Patients in SRPC who died from cancer during the same time period were included as the comparator group. SRPC is a national quality register of the care of patients during their last week of life regardless of place of care or diagnosis, with a coverage of 87.4% of all cancer deaths nationwide in 2013 [7].The SRPC collects data through an end-of-life questionnaire (ELQ) completed retrospectively by the responsible nurse and/or physician within a week of the patient's death, based on the patient record and experience of the care that may not have been documented, preferably after a team discussion, therefore including the experience of all team members. The ELQ includes data on the presence of breathlessness, pain, death rattle, nausea, anxiety and confusion, and prevalence of prescribing "as-needed" medications for pain, nausea, anxiety and death rattle during the last 7 days of life. A previous study supported the validity of the ELQ [8].Prevalence was considered for each symptom in the questions of the ELQ: "Were any of the following symptoms prevalent at some time during the last week of life?" (yes or no). For any reported symptom, the level of symptom relief was graded as relieved, partially relieved or unrelieved. Prevalence of as-needed medication prescriptions was analysed among symptomatic patients for each identified symptom according to the question "Was medication prescribed for use 'as needed' in the form of injections before death for pain, death rattle, nau...

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“…Palliative care specialists often lack the knowledge and skills necessary to communicate effectively with persons with intellectual disability and may have limited experience in working with persons with dementia . Although generally accepted that palliative care principles should be extended to other groups with terminal illnesses such as dementia, much work remains from a policy, resource and educational perspective to operationalize this intent (Luddington et al, 2001;LloydWilliams & Payne, 2002).…”

Section: Responding To End Of Life Issuesmentioning

confidence: 99%