Background: patients with palliative needs often experience high symptom burden which causes suffering to themselves and their families. Depression and psychological distress should not be considered a “normal event” in advanced disease patients and should be screened, diagnosed, acted on and followed-up. Psychological distress has been associated with greater physical symptom severity, suffering, and mortality in cancer patients. A holistic, but short measure should be used for physical and non-physical needs assessment. The Integrated Palliative care Outcome Scale is one such measure. This work aims to determine palliative needs of patients and explore screening accuracy of two items pertaining to psychological needs.
Methods: multi-centred observational study using convenience sampling. Data were collected in 9 Portuguese centres. Inclusion criteria: =18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness. Exclusion criteria: patient in distress (“unable to converse for a period of time”), cognitively impaired. Descriptive statistics used for demographics. Receiving Operator Characteristics curves and Area Under the Curve for anxiety and depression discriminant properties against the Hospital Anxiety and Depression Scale.
Results: 1703 individuals were screened between July 1st, 2015 and February 2016. A total of 135 (7.9%) were included. Main reason for exclusion was being healthy (75.2%). The primary care centre screened most individuals, as they have the highest rates of daily patients and the majority are healthy. Mean age is 66.8 years (SD 12.7), 58 (43%) are female. Most patients had a cancer diagnosis 109 (80.7%). Items scoring highest (=4) were: family or friends anxious or worried (36.3%); feeling anxious or worried about illness (13.3%); feeling depressed (9.6%). Using a cut-off score of 2/3, Area Under the Curve for depression and anxiety items were above 70%.
Conclusions: main palliative needs were psychological, family related and spiritual. This suggests that clinical teams may better manage physical issues and there is room for improvement regarding non-physical needs. Using the Integrated Palliative care Outcome Scale systematically could aid clinical teams screening patients for distressing needs and track their progress in assisting patients and families with those issues.
Introduction: the concept of total suffering is well known to palliative care, and it indicates that there are several complex and correlated factors, which contribute to a dynamic and unique experience of one's illness trajectory. Research on terminally ill patients' will to live (WtL) has revealed important insights on its fluctuations over time and its correlated factors. We report an N-of-1 case study with the aim of examining the concept of total suffering objectively, and the WtL trajectory over time, its fluctuations, as well as its possible correlation with other distressing symptoms in a terminally ill cancer patient.
Case Description: souffrA 72-year-old cancer patient who verbalized total suffering and a low WtL. We used the Edmonton Symptom Assessment Scale (ESAS), added an additional WtL question, and asked the patient to rate her suffering using the ESAS twice daily (morning and afternoon) for a period of 28 days. Spearman's correlation coefficients between all physical and psychosocial ESAS items were statistical significant in 34 of the 45 performed correlations (30 highly significantly correlations and 4 in a lesser degree). WtL trajectory was fluctuant through the course of the illness, and significant correlations between WtL and all ESAS items were found, except for shortness of breath and drowsiness (after Bonferroni correction). High positive correlations were found between WtL and ESAS total score and ESAS physical and psychological subscores.
Discussion: Developing evidence-based understanding of total suffering and WtL in the terminally ill will lead to better approaches to patients and their loved ones.
BACKGROUND: Renal Supportive/Palliative Care is gaining gradual recognition as a patient-centered care approach that should be integrated to the traditional disease-centered model of care, mainly in elder patients with advanced chronic kidney disease (CKD). The objective of this study was to assess knowledge, perceptions, attitude, experience and interest in palliative care among renal care providers.
METHODS: Online survey, administered between May 23 to June 13, 2017 to members of the Brazilian Society of Nephrology (BSN). Participants self-reported knowledge and behaviors regarding renal palliative care.
RESULTS: A total of 3,738 e-mails were sent, 224 (6%) providers completed the survey. Most respondents were under 50 years old (68.5%) and were nephrologists (98.2%). A request from a competent patient to discontinue dialysis would not be honored by 46% and 63% would probably continue dialysis if a patient become severely demented. On the other hand, respondents with =15 years of experience were more prone to stop dialysis (P=0.01) in patients who became permanently and severely demented. Respondents working only in private practice were more willing to continue dialysis in a severely demented patient than those working in a public healthcare system or both (P=0.02). Additionally, 87% of respondents would probably withhold dialysis in a permanently unconscious patient and 92% probably would not resuscitate a patient with a Do Not Resuscitate (DNR) order. Among factors that would have importance on a decision to not initiate dialysis, patient preferences (98.2%), advanced dementia (95%), poor clinical conditions (93.7%) and family wishes (92.3%) were top ranked by respondents. Most respondents routinely evaluate HRQoL (62%), pain and other symptoms (79%) and were very interested (96%) in improving knowledge about renal supportive care.
CONCLUSIONS: Brazilian nephrologists are often unaware of patient autonomy, more prone to withholding than withdrawing dialysis and deem wishes of the family quasi as important as patient preferences in the shared decision making process. Most Participants answered to evaluate pain and quality of life related to health (HRQoL) routinely and have great interest to learn about renal palliative care.
The aim of this scoping review is to give an overview and appraisal of the development of outcome measurement throughout time and its present importance to healthcare and specifically to palliative care clinical practice. It is based on a search and search results of a published systematic review on implementing patient reported outcome measures in palliative care clinical practice. Medline, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, Embase and British Nursing Index were systematically searched from 1985. Hand searching of reference lists for all included articles and relevant review articles was performed. A total of 3,863 articles were screened. Sixty were included in this scoping review. Outcome measurement has a long history in health care and some of the strongest advocates were Florence Nightingale for using patient outcomes besides mortality rates, Codman for the "end result idea" of evaluating the patient status one year after orthopaedic surgery, and Donabedian for taking Codman's work further and developing the structure-process-outcome model. The contribution of patient-centred outcome measurement is vast and paramount in education, audit and as an informative tool for healthcare professionals and decision makers. It is possible to collect these data nationwide which would then allow for cross country comparisons, as well as, economic evaluations in palliative care interventions to contribute to appropriate resource allocation.