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.
Background: End-stage chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF) and chronic renal failure (CRF) are characterized by a high burden of daily symptoms that, irrespective of the primary organ failure, are widely shared.
Aims: To evaluate whether and to which extent symptom-based clusters of patients with end-stage COPD, CHF and CRF associate with patients’ health status, mobility, care dependency and life-sustaining treatment preferences.
Methods: 255 outpatients with a diagnosis of advanced COPD (n = 95), advanced CHF (n = 80) or CRF requiring dialysis (n = 80) were visited in their home environment and underwent a multidimensional assessment: clinical characteristics, symptom burden using Visual Analog Scale (VAS), health status questionnaires, timed “Up and Go” test, Care Dependency Scale and willingness to undergo mechanical ventilation or cardiopulmonary resuscitation. Three clusters were obtained applying K-means cluster analysis on symptoms’ severity assessed via VAS. Cluster characteristics were compared using non-parametric tests.
Results: Cluster 1 patients, with the least symptom burden, had a better quality of life, lower care dependency and were more willing to accept life-sustaining treatments than others. Cluster 2, with a high presence and severity of dyspnea, fatigue, cough, muscle weakness and mood problems, and Cluster 3, with the highest occurrence and severity of symptoms, reported similar care dependency and life-sustaining treatment preferences, while Cluster 3 reported the worst physical health status.
Discussion: Symptom-based clusters identify patients with different health needs and might help to develop palliative care programs.
Conclusion: Clustering by symptoms identifies patients with different health status, care dependency and life-sustaining treatment preferences.
Objective: The aim of this study was to characterize nutritional status, body composition, oxidative stress, and inflammatory activity and to determine the possible associations between nutritional status and clinical variables in advanced cancer patients.
Method: This was a cross-sectional study of 46 elderly cancer patients under palliative care with a prognosis of 30 days or more. Nutritional status, food intake, anthropometry, body composition (deuterium oxide method), metabolic profile, inflammation damage (C-reactive protein), oxidative damage (8-hydroxy-2’-deoxyguanosine), and symptom intensity were evaluated.
Results: Among elderly cancer patients, 36.9% were malnourished or at risk of malnutrition. Systemic inflammation was detected, with a correlation between worse nutritional status and higher C-reactive protein levels (p < 0.01, r= -0.57), while lower lean mass (p < 0.01, r = 0.62) and higher fat mass percentages (p < 0.01, r = 0.62) correlated with higher levels of 8-hydroxy-2’-deoxyguanosine. Furthermore, daily energy (n = 25; 57.4%) and protein intake (n = 24; 52.2%) were lower than recommended in more than half the patients. The most prevalent symptoms were anxiety, impairment of well-being, drowsiness, tiredness, and lack of appetite.
Conclusions: Despite preserved functionality, patients already had clinical and laboratory changes that, together with inadequate food intake, risk of malnutrition, systemic inflammation, and the presence of uncontrolled symptoms, alerted to the importance of an early and comprehensive palliative approach.
CONTEXT: Symptom management is essential in the end of life care of long-term care facility residents.
OBJECTIVES: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.
METHODS: A post mortem survey in Belgium, the Netherlands and Finland: staff and family carers completed the "End-Of-Life in Dementia - Comfort Assessment in Dying" scale (EOLD-CAD), rating 14 symptoms on a 1 to 3-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale and total scores at a group level and interrater agreement and percentage of perfect agreement at a resident level.
RESULTS: Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia—Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.
CONCLUSION: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.
Aims: To examine the impact of palliative care on acute care hospitalizations, survival, symptoms, and quality of life (QOL) in patients with advanced heart failure.
Methods and results: We conducted a systematic search of publications through CENTRAL, CINAHL, EMBASE, and MEDLINE originally up to July 2017, and then updated to June 2019. The study was registered (PROSPERO ID: CRD42017069685) prior to its initiation. Randomized controlled trials (RCTs) were included that tested an interdisciplinary palliative care intervention (compared to usual care) primarily in a heart failure population. Main outcomes assessed were hospitalizations, mortality, QOL, and symptom burden. Ten independent RCTs were selected, representing a total of 1050 participants (921 with a diagnosis of heart failure). Compared with usual care, palliative care interventions were associated with a substantial reduction in hospitalizations [odds ratio 0.56 (0.33–0.94); four trials; I2 = 27%], modest improvement in QOL [standardized mean difference (SMD) 0.25; 95% confidence interval (CI) 0.06–0.45; seven trials; I2 = 15%], and modest reduction in symptom burden (SMD -0.29; 95% CI -0.54–0.03; three trials; I2 = 15%). There was no clear adverse impact on mortality. Most studies had methodological limitations that increased the risk of biases.
Conclusion: Compared to usual care, palliative care interventions substantially reduce hospitalizations, with no clear adverse effect on survival. Effects on QOL and symptom burden appear to be modest, and indicate that further efforts to improve these patient centred outcomes are needed.
OBJECTIVES: Little is known about the relationship between loneliness and end-of-life (EOL) experience including symptom burden, intensity of care, and advance care planning among older adults.
DESIGN: Secondary analysis of the Health and Retirement Study (HRS).
SETTING: Population based.
PARTICIPANTS: Decedents older than 50 years who died between 2004 and 2014 (n = 8700). Exclusions included those who were ineligible for surveys assessing loneliness (n = 2932) or had missing or incomplete loneliness or symptom data (n = 2872).
MEASUREMENTS: Individuals were characterized as lonely based on responses to the three-item Revised University of California, Los Angeles Loneliness Scale in the most recent HRS survey before death. Outcomes were proxy reports of total EOL symptom burden, intensity of EOL care (eg, late hospice enrollment, place of death, hospitalizations, use of life support), and advance care planning. Results were expressed as adjusted odds ratios (aORs) with 95% confidence intervals (CIs).
RESULTS: One-third of 2896 decedents (n = 942) were lonely. After adjusting for demographics, socioeconomic status, multimorbidity, depressive symptoms, family and friends, and social support, loneliness was independently associated with increased total symptom burden at EOL (ß = .13; P = .004). Compared with nonlonely individuals, lonely decedents were more likely to use life support in the last 2 years of life (35.5% vs 29.4%; aOR = 1.36; 95% CI = 1.08-1.71) and more likely to die in a nursing home (18.4% vs 14.2%; aOR = 1.78; 95% CI = 1.30-2.42). No significant differences in other measures of intense care (late hospice enrollment, number of hospitalizations, or dialysis use) or likelihood of advance care planning were observed.
CONCLUSION: Lonely older people may be burdened by more symptoms and may be exposed to more intense EOL care compared with nonlonely people. Interventions aiming to screen for, prevent, and mitigate loneliness during the vulnerable EOL period are necessary.
Terminal delirium is a common occurrence in patients at the end of life, and its presence is widely accepted as a poor prognostic indicator. The hyperactive subtype is characterized by psychomotor agitation that is distressing to patients, caregivers, and providers. The purpose of this study was to determine whether physical, psychosocial, or spiritual data collected at hospice admission are associated with development of hyperactive terminal delirium. In this retrospective cohort study, 154 patients were assigned to one of two cohorts depending on whether or not they had signs of hyperactive terminal delirium. Hospice admission data from the Hospice Item Set, psychosocial assessment, and spiritual assessment were analyzed using descriptive statistics, inferential statistics, and logistic regression. Although there were no statistically significant relationships among the physical, psychosocial, and spiritual variables and hyperactive terminal delirium, there were some findings that are clinically significant for nurses caring for patients at the end of life. Specifically, this study highlights the importance of ongoing physical, psychosocial, and spiritual assessment throughout the end-of-life trajectory, as well as prompt management of symptoms.
Background/Aim: Previous research has suggested that palliative radiotherapy is a useful measure, unless short survival reduces the time spent without active treatment, and in the case of a low likelihood of experiencing a net benefit in quality of life. Patients with reduced performance status (PS) may be especially at risk of futile treatment, despite having a relatively high symptom burden and thus a potential benefit. Therefore, we analyzed the symptom burden of patients with Eastern Cooperative Oncology Group (ECOG) PS 3-4 in our center. Patients and Methods: A retrospective study was performed of 102 consecutive patients who received palliative radiotherapy for different indications. The Edmonton Symptom Assessment Scale (ESAS) was employed to assess the pre-radiotherapy symptoms.
Results: When applying the lowest threshold (ESAS =1), up to 97% of patients with PS 3-4 reported symptoms, such as fatigue and dry mouth. When focusing on moderate/severe symptoms (ESAS =4), still up to 77% of patients with PS 3-4 reported such a burden. The largest differences between patients with PS 3-4 and those with 0-1 were seen with regard to nausea, fatigue, dry mouth and reduced appetite. The median survival of patients with PS 3-4 was 2 months.
Conclusion: Given that many of the symptoms reported by patients with PS 3-4 tend to worsen temporarily after radiotherapy, patients with short survival may not experience a net benefit during the few weeks before death. However, if other symptoms such as dyspnea or pain prevail, short-course radiotherapy may result in worthwhile palliation and should, therefore, be considered on a case-by-case basis and after estimation of the remaining lifespan.
The aim of this study was to compare the symptomatology, palliative care outcomes, therapeutic procedures, diagnostic tests, and pharmacological treatments for people with dementia (PWD) and without dementia (PW/OD) admitted to Spanish nursing homes.
DESIGN: This was a cross-sectional study which is part of a long-term prospective follow-up of elderly people performed in nursing homes to measure end-of-life care processes.
PARTICIPANTS: 107 nursing home patients with advanced or terminal chronic diseases were selected according to the criteria of the Palliative Care Spanish Society.
SETTING: Two trained nurses from each nursing home were responsible for participant selection and data collection. They must have treated the residents and had a minimum seniority of 6 months in the nursing home.
MEASUREMENTS: Sociodemographic data; Edmonton Symptom Assessment Scale; Palliative Care Outcome Scale; and prevalence of diagnostic tests, pharmacological treatments, and therapeutic procedures were evaluated.
RESULTS: Pain, fatigue, and nausea were found to be significantly higher in the nondementia group and insomnia, poor appetite, and drowsiness were significantly higher in the dementia group. Patient anxiety, support, feeling that life was worth living, self-worth, and practical matters management were higher in the nondementia group. Regarding drugs, use of corticoids was higher in the nondementia group, while use of anxiolytics was higher in the dementia group. Diagnostic procedures such as urine analysis and X-ray were higher in the dementia group.
CONCLUSIONS: Differences in symptom perception, diagnostic tests, and pharmacological procedures were found between patients with and without dementia. Specific diagnostic tools need to be developed for patients with dementia.
BACKGROUND/AIM: Recent studies suggested that patients with oligometastases have a better prognosis compared with those who have widespread dissemination. In both groups, radiotherapy is a commonly applied treatment. Patient-reported symptoms might depend on the burden of disease. Possibly, oligometastatic patients report lower scores for symptoms, such as fatigue or reduced appetite, which tend to worsen as the disease progresses to a later stage. Therefore, we analyzed the symptom scores in two groups of patients with or without oligometastatic disease.
PATIENTS AND METHODS: A retrospective study was performed in 83 patients who received palliative, non-ablative radiotherapy for distant metastases. The Edmonton Symptom Assessment Scale (ESAS) was employed to assess the pre-radiotherapy symptoms.
RESULTS: The oligometastatic group was smaller than anticipated (n=11). The ESAS score differences were not statistically significant. However, oligometastatic patients reported less fatigue, pain and dry mouth (p<0.2). They also had a better performance status. The median survival of oligometastatic patients was longer (8.1 vs. 5.5 months, p=0.17), in the absence of ablative metastases-directed treatment.
CONCLUSION: The oligometastatic state is not a major contributor to the variable patient-reported symptom scores.
Children with cancer experience multiple symptoms at end of life (EOL) that impair their health-related quality of life. Using the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines, this integrative literature review comprehensively summarized symptom experiences of children with cancer at EOL. The Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, and Academic Premier were searched between January 2007 to September 2019 for articles published in English using the MeSH terms: symptom burden or distress AND children with cancer or pediatric cancer or cancer children or oncology and pediatrics AND EOL care or palliative care or death or dying or terminally ill. The inclusion criteria were the following: (a) study designs [randomized controlled trials, nonexperimental, secondary analysis (if aims were distinct from primary studies) and qualitative]; (b) participants <18 years old (died of cancer, had no realistic chance of cure, or had advanced cancer); and (c) focused on symptom experiences/burden at EOL. Exclusion criteria were nonresearch articles, systematic reviews, case studies, reports, and studies that focused on cancer survivors and/or those receiving curative therapies. Twenty-seven articles met inclusion criteria. The most prevalent symptoms-pain, fatigue, dyspnea, and loss of appetitewere associated with impairments in health-related quality of life. Children with brain tumors experienced higher symptom burden compared to those with hematologic/solid malignancies. Children who received cancer-directed therapies experienced disproportionate symptoms and were more likely to die in the intensive care unit compared with those who did not receive cancer-directed therapies. Most common location of death was home. This integrative review indicated that children with cancer were polysymptomatic at EOL. Strategies facilitating effective symptom management at EOL are needed.
The aim of the study is to evaluate the intensity of symptoms, and any treatment and therapeutic procedures received by advanced chronic patients in nursing homes. A multi-centre prospective study was conducted in six nursing homes for five months. A nurse trainer selected palliative care patients from whom the sample was randomly selected for inclusion. The Edmonton Symptoms Assessment Scale, therapeutic procedures, and treatment were evaluated. Parametric and non-parametric tests were used to evaluate month-to-month differences and differences between those who died and those who did not. A total of 107 residents were evaluated. At the end of the follow-up, 39 had (34.6%) died. All symptoms (p < 0.050) increased in intensity in the last week of life. Symptoms were more intense in those who had died at follow-up (p < 0.05). The use of aerosol sprays (p = 0.008), oxygen therapy (p < 0.001), opioids (p < 0.001), antibiotics (p = 0.004), and bronchodilators (p = 0.003) increased in the last week of life. Peripheral venous catheters (p = 0.022), corticoids (p = 0.007), antiemetics (p < 0.001), and antidepressants (p < 0.05) were used more in the patients who died. In conclusion, the use of therapeutic procedures (such as urinary catheters, peripheral venous catheter placement, and enteral feeding) and drugs (such as antibiotics, anxiolytics, and new antidepressant prescriptions) should be carefully considered in this clinical setting.
Background: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns.
Aim: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa.
Setting and participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0–17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report.
Results: A total of 120 interviews were conducted with children with life-limiting conditions (n = 61; age range: 7–17 years), and where self-report was not possible, caregivers (n = 59) of children (age range: 0–17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns – pain and symptom distress; psycho-social concerns – family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns – worry about death, and loss of ambitions; health care quality – child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age.
Conclusion: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.
The majority of patients with esophagus cancer have advanced-stage disease without curative options. For these patients, treatment is focused on improving symptoms and quality of life. Despite this, little work has been done to quantify symptom burden for incurable patients. We describe symptoms using the Edmonton Symptom Assessment System (ESAS) among esophagus cancer patients treated for incurable disease. This retrospective cohort study linked administrative datasets to prospectively collected ESAS data of non-curatively treated adult esophagus cancer patients diagnosed between January 1, 2009 and September 30, 2016. ESAS measures nine common cancer-related symptoms: anxiety, depression, drowsiness, lack of appetite, nausea, pain, shortness of breath, tiredness, and impaired well-being. Frequency of severe symptoms (score = 7/10) was described by month for the 6 months from diagnosis for all patients and by treatment type (chemotherapy alone, radiotherapy alone, both chemotherapy and radiotherapy, and best supportive care). A sensitivity analysis limited to patients who survived at least 6 months was performed to assess robustness of the results to proximity to death and resulting variation in follow-up time. Among 2,989 esophagus cancer patients diagnosed during the study period and meeting inclusion criteria, 2,103 reported at least one ESAS assessment in the 6 months following diagnosis and comprised the final cohort. Patients reported a median of three (IQR 2–7) ESAS assessments in the study period. Median survival was 7.6 (IQR 4.1–13.7) months. Severe lack of appetite (53.1%), tiredness (51.1%), and impaired well-being (42.7%) were the most commonly reported symptoms. Severe symptoms persisted throughout the 6 months after the diagnosis. Subgroup analysis by treatment showed no worsening of symptoms over time in those treated by either chemotherapy alone, or both chemotherapy and radiation. Results followed a similar pattern on sensitivity analysis. Patients diagnosed with incurable esophagus cancer experience considerable symptom burden in the first 6 months after diagnosis and the frequency of severe symptoms remains high throughout this period. Patients with this disease require early palliative care and psychosocial support upon diagnosis and support throughout the course of their cancer journey.
CONTEXT: Psychological symptoms are common among palliative care patients with advanced illness, and their effect on quality of life can be as significant as physical illness. The demand to address these issues in palliative care is evident, yet barriers exist to adequately meet patients' psychological needs.
OBJECTIVES: This article provides an overview of mental health issues encountered in palliative care, highlights the ways psychologists and psychiatrists care for these issues, describes current approaches to mental health services in palliative care, and reviews barriers and facilitators to psychology and psychiatry services in palliative care, along with recommendations to overcome barriers.
RESULTS: Patients in palliative care can present with specific mental health concerns that may exceed palliative care teams' available resources. Palliative care teams in the USA typically do not include psychologists or psychiatrists, but in palliative care teams where psychologists and psychiatrists are core members of the treatment team, patient well-being is improved.
CONCLUSION: Psychologists and psychiatrists can help meet the complex mental health needs of palliative care patients, reduce demands on treatment teams to meet these needs and are interested in doing so; however, barriers to providing this care exist. The focus on integrated care teams, changing attitudes about mental health, and increasing interest and training opportunities for psychologists and psychiatrists to be involved in palliative care, may help facilitate the integration of psychology and psychiatry into palliative care teams.
Background: Given a slow course of disease, end-of-life issues are understudied in neuroendocrine tumors (NETs). To date, there are no data regarding symptoms at the end of life. This study examined symptom trajectories and factors associated with high symptom burden in NETs at the end of life.
Methods: We conducted a retrospective cohort study of NET patients diagnosed from 2004 to 2015 and who died between 2007 and 2016, in Ontario, Canada. Prospectively collected patient-reported Edmonton Symptom Assessment System scores were linked to administrative healthcare datasets. Moderate-to-severe symptom scores (= 4 out of 10) in the 6 months before death were analyzed, with multivariable modified Poisson regression identifying factors associated with moderate-to-severe symptoms scores.
Results: Among 677 NET decedents, 2579 symptom assessments were recorded. Overall, moderate-to-severe scores were most common for tiredness (86%), wellbeing (81%), lack of appetite (75%), and drowsiness (68%), with these proportions increasing as death approached. For symptoms of lack of appetite, drowsiness, and shortness of breath, the increase was steepest in the 8 weeks before death. On multivariable analyses, the risk of moderate-to-severe symptoms was significantly higher in the last 2 months before death and for patients with shorter survival (< 6 months). Women had higher risks of anxiety, nausea, and pain.
Conclusion: A high prevalence of moderate-to-severe symptoms was observed for NETs at the end of life, not previously described. The proportion of moderate-to-severe symptoms increases steeply as death nears, highlighting an opportunity for improved management. Combined with identified factors associated with moderate-to-severe symptoms, this information is important to improve patient-centred and personalized supportive care for NETs at the end of life.
OBJECTIVE: The objective of this review was to synthesize the experiences of health professionals who have experienced grief as a result of a pediatric patient dying.
INTRODUCTION: There has been some research into health professionals' grief experiences, but there has not been a review that synthesizes the findings of these experiences. Other related reviews have focused on prenatal, perinatal or adult deaths or the coping strategies employed by health professionals. This review highlights the complexities of experiences faced by pediatric health professionals.
INCLUSION CRITERIA: Qualitative studies involving pediatric health professionals working in any healthcare setting who had experienced grief from the death of a patient were considered for inclusion. Studies were conducted in any country, at any time and published in English.
METHODS: The search was conducted in PubMed, CINAHL, Embase, PsycINFO, Scopus and ProQuest Dissertations and Theses. The search was completed in January 2019. The review followed principles of meta-aggregation in line with the JBI approach. Methodological quality assessment was based on representation of participants' voices and congruence between research methodology and both research question and analysis of data.
RESULTS: Meta-aggregation led to three synthesized findings from 12 qualitative studies that met the inclusion and methodological quality criteria. Studies predominantly included nurses working in a hospital, with sample sizes ranging from six to 25 participants. The synthesized findings were physical, behavioral, psychological or spiritual symptoms; compounding grief; and alleviating grief. Physical, behavioral, psychological, or spiritual symptoms highlighted the various characteristics of grief experiences by health professionals. Compounding grief was the largest synthesized finding and incorporated the various factors that contributed to a poorer experience of grief. Alleviating grief showed the limited identified factors that improved the experience of grief. Methodological quality led to synthesized findings receiving a ConQual rating of low or moderate.
CONCLUSIONS: The synthesized findings from this review highlight the varied reported experience of grief in health professionals. The methodological quality and reporting of studies, however, led to decreased confidence in the synthesized findings and recommendations arising from this review. Healthcare professionals should be aware of the potential for experiencing grief when a patient dies and the compounding and alleviating factors associated with this. Further research could expand participant and language limitations, and improve methodological quality and reporting.
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.
Objectif: L’objectif principal de l’étude était de décrire les prescriptions médicales et les symptômes survenant dans les 7 derniers jours de vie, chez des patients atteints d’un cancer et pris en charge en soins palliatifs en hospitalisation à domicile.
Patients et méthode: Tous les patients, en soins palliatifs, pris en charge et décédés entre mai 2011 et mai 2018 en hospitalisation à domicile du centre Georges-François-Leclerc, à Dijon en Bourgogne (France) ont été inclus dans cette étude rétrospective monocentrique.
Résultats: Un total de 90 patients a été inclus dans cette étude. Il s’agissait majoritairement de femmes (deux tiers des patients), l’âge médian était de 65 ans. Les principaux symptômes retrouvés lors de la dernière semaine de vie étaient : les troubles de conscience (91 %, n=79), l’anxiété (81 %, n=70), la douleur (78 %, n=70), la dyspnée (61 %, n=50) et l’agitation (41 %, n=31). On retrouvait un traitement antalgique chez 97 % des patients, une corticothérapie dans 81 % des cas (n=73), de la scopolamine par voie transdermique dans 49 % des cas (n=44). Le midazolam était prescrit chez 61 % (n=65) des patients. Une hydratation intraveineuse était administrée chez 40 % des patients (n=36). La moyenne d’âge chez les patients sous hydratation intraveineuse était significativement plus faible que chez les autres (60,7 ans contre 67,4 ans p=0,0255). Parmi les patients ayant bénéficié de chimiothérapie (n=80), 27 % ont reçu une cure dans le dernier mois de vie. Ces mêmes patients avaient un score pronostique élevé (13 avaient un score Pronopall supérieur ou égal à 8).
Conclusion: La prise en charge en hospitalisation à domicile est conforme aux recommandations nationales de l’Agence national de sécurité du médicament et des produits de santé et comparable aux données de la littérature.
Le cancer du col utérin est fréquent chez les jeunes femmes en zone rurale et vu souvent au stade tardif. La présente étude avait pour objectif de questionner les facteurs responsables des souffrances physiques et psychologiques de ces patients en fin de vie. La question de la fin de vie qui fait référence ici aux soins palliatifs reste une des perspectives non négligeable de sa prise en charge. Il s'agit d'une étude qualitative et rétrospective à visée descriptive et concerne une série de trois cas de cancer du col de l'utérus suivis à l'hôpital Saint Vincent de Paul au cours de l'année 2017. Les données ont été collectées à partir des dossiers de soins des patientes. Ces données ont été analysées selon la méthode de création et gestion de code-books et plus particulièrement le codage par catégories ontologiques. Les résultats de ce travail nous ont permis d'accuser les facteurs tels que le retard de la suspicion et du diagnostic du cancer du col utérin, la difficulté d'accès aux soins holistiques ainsi que la précarité sociale comme prétexte des souffrances physiques et psychologiques que connaissent ces patientes reçues dans le milieu éloigné des métropoles en fin de vie. Cette étude permet d'insister sur les approches de soins palliatifs comme composante incontournable de la prise en charge en milieu rural.