OBJECTIVE: Describe the knowledge of physicians in an Oncology Clinic and a school hospital, of both the private health network, located in Manaus-AM about palliative care (PC), and define the role of religion in medical care of patients with advanced severe illness, with no disease modifying therapy.
METHOD: This is a cross-sectional, descriptive, and observational study. After signing the Free and Informed Consent Term, the physicians included completed a professional membership record and answered questions about a hypothetical clinical case through multiple choice answers. The clinical case described a patient with advanced chronic disease not a candidate for disease-modifying therapy in the final phase of life. The questions involved aspects related to nutrition, venous access, and hospitalization in the intensive care unit (ICU).
RESULTS: A total of 31 physicians from different specialties were included. About 67.7% consider their knowledge about PC insufficient, and none of the participants is unaware of this modality of care. The prevalence of invasive behaviors related to patient nutrition, venous access, and indication of ICU and cardiopulmonary resuscitation (CPR) was higher among physicians without religion (HR = 1.84; HR = 2.89; HR = 1.04, respectively) than among those who follow a religion.
CONCLUSION: Absence of religion is associated with higher invasive behaviors on the part of physicians. Further studies are needed to better define this relationship.
Prolonged seizures and status epilepticus (SE) are relevant problems in palliative care. Timely recognition and effective early treatment with first- and second-line antiepileptic drugs (AEDs) may prevent unnecessary hospitalizations. Seizures should be recognized and addressed like any other symptom that causes discomfort or reduces quality of life. Use of alternative AED administration routes (buccal, intranasal, or subcutaneous) may offer possibilities for effective and individualized AED therapy, even during the last days of life. In hospice or home care, however, also intravenous treatment is possible via vascular access devices for long-term use. Aggressive unlimited intensive care unit (ICU) treatment of refractory SE in palliative patients is mostly not indicated. At worst, intensive care can be futile and possibly harmful: death in the ICU is often preceded by long and aggressive treatments. Metastatic cancer, old age, high severity of acute illness, overall frailty, poor functional status before hospital admission, and the presence of severe comorbidities all increase the probability of poor outcome of intensive care. When several of these factors are present, consideration of withholding intensive care may be in the patient's best interests. Anticipated outcomes influence patients' preferences. A majority of patients with a limited life expectancy because of an incurable disease would not want aggressive treatment, if the anticipated outcome was survival but with severe functional impairment. Doctors' perceptions about their patients' wishes are often incorrect, and therefore, advance care planning including seizure management should be done early in the course of the disease. This article is part of the Special Issue "Proceedings of the 7th London-Innsbruck Colloquium on Status Epilepticus and Acute Seizures".
Advanced chronic obstructive pulmonary disease (COPD), is characterized by high morbidity and mortality. Patients with COPD and their families experience a range of stresses and suffering from a variety of sources throughout the disease's progression. COPD is the fourth leading cause of death in the world. It exists as a significant contributor to global morbidity and mortality, and it results in substantial economic and social burden. This review provides some key facts regarding disease burden and encourages clinician to familiarize themselves and use both conventional and palliative approach early in the disease progression for a better quality of life.
OBJECTIVES: As the US population ages and healthcare reimbursement shifts, identifying new patient-centred, cost-effective models to address acute medical needs will become increasingly important. This study examined whether community paramedics can evaluate and treat, under the direction of a credentialed physician, high acuity medical conditions in the home within an advanced illness management (AIM) practice.
METHODS: A prospective observational study of an urban/suburban community paramedicine (CP) programme, with responses initiated based on AIM-practice protocols and triaged prior to dispatch using the Advanced Medical Priority Dispatch System (AMPDS). Primary outcome was association between AMPDS acuity levels and emergency department (ED) transport rates. Secondary outcomes were ED presentations at 24 and 48 hours post-visit, and patient/caregiver survey results.
RESULTS: 1159 individuals received 2378 CP responses over 4 years. Average age was 86 years; dementia, heart failure and asthma/chronic obstructive pulmonary disease were prevalent. Using AMPDS, most common reasons for dispatch included 'breathing problems' (28.2%), 'sick person' (26.5%) and 'falls' (13.1%). High acuity responses were most prevalent. 17.9% of all responses and 21.0% of high acuity responses resulted in ED transport. Within 48 hours of the visit, only 5.7% of the high acuity responses not initially transported were transported to the ED. Patient/caregiver satisfaction rates were high.
CONCLUSION: Community paramedics, operating within an AIM programme, can evaluate and treat a range of conditions, including high acuity conditions, in the home that would typically result in ED transport in a conventional 911 system. This model may provide an effective means for avoiding hospital-based care, allowing older adults to age in place.
Many patients with cancer live in rural areas and research is lacking on the efficacy of palliative care programs in rural community settings. This pilot study was conducted in a primarily rural setting where healthcare professionals delivered palliative care to 52 mostly lower income patients with a variety of cancers. They were assessed for physical, financial, psychosocial and overall symptom intensity at baseline and at three consequent assessments. This pilot study demonstrated the potential efficacy of an outpatient palliative care program in a mostly rural setting in the reduction of physical, psychosocial, and overall symptom intensity in patients with cancer.
Patients often affirm the goal to pursue comfort at the end of life, although clinicians may struggle with how best to provide comfort and face the ethical dilemma of treating or allowing a suspected infection to unfold. Treating an infection at the end of life does not allow for uniform improvement in symptoms and more time with family and friends. Additionally, there is potential for burden to the patient or health care system and treatment may occur to the exclusion of other comfort measures. Currently, the practice of providing or forgoing antibiotics at the end of life is variable, and literature supporting best practices can be contradictory. Data to support the use or withholding of treatment have been scant and vary across settings and patient populations. We review common obstacles providers face, prognostication tools that may assist in clinical decision making, the ethical support for withholding therapy, and how to factor in potential burdens of treatment. We propose that nurses, whether at the bedside in an acute care or nursing facility or in the home setting as a member of the interdisciplinary home hospice team, are uniquely qualified to help patients and families navigate this challenging clinical decision.
OBJECTIVE: In Indonesia, palliative care has not been uniformly implemented at all levels of healthcare facilities. Healthcare personnel play an important role in providing that care. This study aimed to explore the current conditions and expectations regarding palliative care from the perspective of healthcare personnel.
RESULTS: A qualitative study was conducted with 12 physicians and five nurses from December 2017 to June 2018. In-depth interviews of these professionals were conducted. The responses were subjected to inductive thematic analysis, generating five themes and 24 subthemes. The themes were (1) family and environment, including barriers and contributions to palliative care; (2) numbers and competence of healthcare providers; (3) accessibility of palliative care; (4) case management of patient's and family's problems by healthcare personnel; and (5) barriers or enabling factors from the healthcare system. Patients, family members, and healthcare personnel contribute to case management. Attention must be paid to improving access and the healthcare system for thorough implementation of palliative care.
OBJECTIVE: Terminally ill patients at their end-of-life (EOL) phase attending the emergency department (ED) may have complex and specialized care needs frequently overlooked by ED physicians. To tailor to the needs of this unique group, the ED in a tertiary hospital implemented an EOL pathway since 2014. The objective of our study is to describe the epidemiological characteristics, symptom burden and management of patients using a protocolized management care bundle.
METHODS: We conducted an observational study on the database of EOL patients over a 28-month period. Patients aged 21 years and above, who attended the ED and were managed according to these guidelines, were included. Clinical data were extracted from the hospital's electronic medical records system.
RESULTS: Two hundred five patients were managed under the EOL pathway, with a slight male predominance (106/205, 51.7%) and a median age of 78 (interquartile range 69-87) years. The majority were chronically frail (42.0%) or diagnosed with cancer or other terminal illnesses (32.7%). The 3 most commonly experienced symptoms were drowsiness (66.3%), dyspnea (61.5%), and fever (29.7%). Through the protocolized management care bundle, 74.1% of patients with dyspnea and/or pain received opiates while 59.5% with copious secretions received hyoscine butylbromide for symptomatic relief.
CONCLUSION: The institution of a protocolized care bundle is feasible and provides ED physicians with a guide in managing EOL patients. Though still suboptimal, considerable advances in EOL care at the ED have been achieved and may be further improved through continual education and enhancements in the care bundle.
Introduction: This case-control study evaluates the success of indwelling pain catheters in nonoperatively treated femoral neck fractures (FNFs) for end-of-life pain management.
Methods: Patients older than 65 years with nonoperatively treated FNFs were retrospectively identified at a level 1 trauma center between March 2012 and September 2015. Twenty-three received indwelling continuous peripheral pain catheters (experimental) and 10 received traditional pain control modalities (control). Pain scores 24 hours before/after pain management interventions, ambulation status at admission and discharge, mortality at 30 days/1 year, and length of hospital stay (LOS) were compared between treatment groups.
Results: The experimental and control groups were similar with respect to demographics, differing only in pre-fracture ambulatory status (P = .03). The 30-day mortality was 52% versus 50% (odds ratio, OR: 1.1 [95% confidence interval, CI: 0.25-4.82], P = .99) and 1-year mortality was 87% versus 80% (OR: 1.67 [95% CI: 0.23-11.9], P = .63) for experimental and control groups, respectively. The LOS did not statistically significantly differ for experimental and control groups (5.3 ± 3.56 days vs 3.8 ± 1.81 days, P = .15), respectively. The experimental group experienced twice the improvement in ambulation status (1.0 ± 0.56 vs 0.5 ± 0.71, P = 0.03) and greater improvement in pain scores (4.5 ± 2.19 vs 1.2 ± 2.72, P = .002).
Discussion: Operative management of FNFs may not be indicated in patients with advanced age and comorbidities. Regardless, these patients require pain palliation and early mobilization while minimizing hospital LOS and opiate consumption.
Conclusion: This case-control study demonstrates significant improvement in both pain level and ambulatory status for patients treated with indwelling continuous peripheral catheters. Future studies should further evaluate with a larger sample size; however, this study provides an excellent launching point for palliative management of this complex population.
BACKGROUND: The use of advance care planning and advance decisions for psychiatric care is growing. However, there is limited guidance on clinical management when a patient presents with suicidal behaviour and an advance decision and no systematic reviews of the extant literature.
OBJECTIVES: To synthesise existing literature on the management of advance decisions and suicidal behaviour.
DESIGN: A systematic search of seven bibliographic databases was conducted to identify studies relating to advance decisions and suicidal behaviour. Studies on terminal illness or end-of-life care were excluded to focus on the use of advance decisions in the context of suicidal behaviour. A textual synthesis of data was conducted, and themes were identified by using an adapted thematic framework analysis approach.
RESULTS: Overall 634 articles were identified, of which 35 were retained for full text screening. Fifteen relevant articles were identified following screening. Those articles pertained to actual clinical cases or fictional scenarios. Clinical practice and rationale for management decisions varied. Five themes were identified: (1) tension between patient autonomy and protecting a vulnerable person, (2) appropriateness of advance decisions for suicidal behaviour, (3) uncertainty about the application of legislation, (4) the length of time needed to consider all the evidence versus rapid decision-making for treatment and (5) importance of seeking support and sharing decision-making.
CONCLUSIONS: Advance decisions present particular challenges for clinicians when associated with suicidal behaviour. Recommendations for practice and supervision for clinicians may help to reduce the variation in clinical practice.
BACKGROUND: Neoplastic pericardial effusion (NPE) is a life-threatening condition that can worsen clinical outcome in cancer patients. The optimal management of NPE has yet to be defined because randomized studies are lacking.
OBJECTIVE: We report a retrospective monoinstitutional experience describing characteristics, management and prognostic factors in NPE patients.
DESIGN: We reviewed clinical, pathological, and echocardiographic features, therapeutic strategies, and outcome in NPE patients referred to our institute from August 2011 to December 2017.
MEASUREMENTS: Twenty-nine patients with NPE from solid tumors have been identified: 21 lung, 5 breast, and 3 other cancer patients.
RESULTS: Median age was 62 years. Most of the patients had Eastern Cooperative Oncology Group (ECOG) performance status (PS) =2 (69%) and a symptomatic NPE (69%). In 52% of patients NPE was detected at first diagnosis of metastatic disease, and in 20% of patients pericardium was the only site of metastases. Most of the patients (62%) received systemic therapy, 28% received combined locoregional and systemic therapy, and 10% received locoregional therapy alone. Median overall survival (OS) from NPE diagnosis was 3.9 months. Patients with PS =2 had worse OS than patients with better PS <2 (hazard ratio [HR] 3.56, IC 95% 1.19–10.65, p 0.02). Older age, extrapericardial disease, and NPE at progression showed a trend of association with worse OS. Patients treated with locoregional therapy alone showed the shortest median OS (p 0.05).
CONCLUSIONS: NPE is related to dismal prognosis. Poor PS significantly worsens survival and influences therapeutic approaches. Randomized studies are required to investigate prognostic factors and appropriate clinical management for patients with NPE.
BACKGROUND: Patients with advanced cancer have an elevated risk of venous thromboembolism. Increasingly, patients are admitted to palliative care settings for brief admissions, with greater numbers of discharges (vs deaths) reported internationally. There is limited guidance around the use of thromboprophylaxis or incidence of venous thromboembolism for these patients.
AIM: The aim of this study was to review the use of thromboprophylaxis as well as incidence of venous thromboembolism and bleeding in palliative care units or residential hospices for patients with advanced cancer.
DESIGN: A systematic review using Cochrane methods.
DATA SOURCES: Medline, Embase and the Cochrane Library were searched up to 28 September 2018 along with a grey literature search; the reference lists of selected papers were hand-searched. Inclusion criteria were original papers assessing thromboprophylaxis use in palliative care units or residential hospices for adult inpatients with cancer. Two reviewers independently selected and appraised papers using a tool designed for disparate data. Heterogeneity in study design made a meta-analysis not possible.
RESULTS:: A total of 11 full-text papers (9 quantitative and 2 qualitative) and 11 abstracts were included. Thromboprophylaxis use ranged between 4% and 53%; venous thromboembolism rates between 0.5% and 20%; and bleeding incidence was between 0.01% and 9.8%. Risk assessment tools were used infrequently and adherence to international thromboprophylaxis guidelines ranged between 5% and 71%. Physician opinions differed around the use of thromboprophylaxis; patients were largely accepting of thromboprophylaxis if it was offered.
CONCLUSION: There is limited evidence around the optimal use of thromboprophylaxis for patients with advanced cancer admitted to palliative care settings. Although some patients may derive benefit, further research in this area is warranted.
BACKGROUND: Pressure injury is a common clinical parameter of patient care outcome. Various risk factors increase the risk of palliative care patients to pressure injuries and difficult wound healing. Healthcare professionals are aware that wound healing is difficult, but they still focus on this process instead of providing the needs of patients with unhealed wounds.
METHODS: This study aims to identify the clinical parameters of pressure injuries in relation to patients with advanced illness. A retrospective analysis of the records of patients with pressure injuries admitted over 18 months was performed. Descriptive analysis and Spearman's correlation coefficient were used.
RESULTS: A total of 127 clinical records were reviewed. The study revealed that patients of old age, high creatinine level, advanced wound age, reduced palliative performance scale (PPS) and low Norton scores are prone to suffer from unhealed wounds.
CONCLUSIONS: Pressure injuries are prone to non-healing in patients with old age, high creatinine level, advanced wound stage, low PPS and low Norton scores. Further studies involving patients in earlier stage can be considered.
INTRODUCTION: There is evidence that people with non-malignant disease receive poorer end-of-life (EOL) care compared to people with cancer. OBJECTIVES To assess the selected aspects of symptomatic treatment and communication between physicians and patients diagnosed with either advanced chronic obstructive pulmonary disease (COPD) or lung cancer.
METHODS: A questionnaire survey was conducted on-line among members of Polish Respiratory Society (PRS).
RESULTS: Correctly filled-in questionnaires were returned by 174 respondents (27.2% of those proved to be contacted by e-mail). In COPD, 32% of respondents always/often used opioids in chronic breathlessness and 18.3% always/often referred patients to palliative care (PC) specialist. Nearly 80% of respondents regarded bedside talks with people with COPD on EOL issues as essential, although only 20% would always/often initiate them. In people with lung cancer, opioids were routinely used for relief of chronic breathlessness by 80.0% of physicians; 81.7% referred patients to PC. More than half of the respondents always/often discussed EOL issues with only the patient's caregivers/relatives. Younger physicians, those caring for higher numbers of people with lung cancer and those who were better acquainted with PRS recommendations for PC in chronic lung diseases seemed to provide better EOL care for COPD patients.
CONCLUSIONS: People with COPD were seldom treated with opioids to relieve chronic breathlessness, or referred to PC consultation compared to people with lung cancer. Discussing the EOL issues with a patient was generally found challenging by physicians, and most often pursued with caregivers instead. COPD recommendations on PC may help to provide better EOL care by pulmonologists.
The death of a loved one is a stressful experience that can lead to the onset of a range of mental disorders, including major depressive disorder (MDD) and complicated grief (CG). CG is a disorder characterized by persistent and impairing grief symptoms (e.g., yearning, preoccupation with the deceased). Though MDD and CG frequently co-occur, factor-analytic studies and treatment research support their classification as separate disorders. In this chapter, we review biological, psychological, and loss-related risk factors for CG in relationship to MDD. Some of these factors appear to be shared by both disorders (e.g., factors associated with poor stress-regulation and coping). However, some factors appear specific to CG (e.g., the loss of an attachment figure). We then discuss research pertinent to the clinical management of both disorders. Differential diagnosis of MDD and CG among bereaved individuals is paramount, as these disorders appear to respond to different treatments.
Palliative care has a very important role in the care of patients with motor neurone disease and their families. There is increasing emphasis on the multidisciplinary assessment and support of patients within guidelines, supported by research. This includes the telling of the diagnosis, the assessment and management of symptoms, consideration of interventions, such as gastrostomy and ventilatory support, and care at the end of life. The aim of palliative care is to enable patients, and their families, to maintain as good a quality of life as possible and helping to ensure a peaceful death.
BACKGROUND: Intractable pruritus affects an estimated 83% of patients with advanced cutaneous T-cell lymphoma. Palliative care strategies to improve outcomes for these patients are lacking. Lignocaine antagonises kappa opioid antagonist-induced scratching in mice models and may relieve cutaneous T-cell lymphoma-pruritus.
PRACTICE CHALLENGE: The aim of this retrospective case series was to evaluate our clinical experience with low-dose continuous subcutaneous infusion lignocaine for intractable pruritus associated with cutaneous T-cell lymphoma, from 2000 to 2015. The study received approval from Retrospective Review Panel, Division Cancer Medicine, 12 October 2015, V1.1.
METHOD: Baseline demographics including cutaneous T-cell lymphoma diagnosis and management, comorbidities, and pruritus-related evaluation including onset, severity, past and current therapies were collected. Response categories (Complete, Partial, No, Unknown) were devised for the study, based on severity of pruritus, impact on sleep and mood. The mean of responses was calculated for each patient and across the series.
OUTCOME: Nineteen patients received continuous subcutaneous infusion lignocaine, in 45 treatment episodes, ranging from 1 to 70 days (interquartile range = 5). Baseline mean number of adjuvants was 3.9 (range, 1–9). Across the series, complete response was achieved, on average, 26.7% days, partial response 49.4%, no response 16.1% and unknown response 9.2%. Drowsiness was documented in four patients. Three patients died during continuous subcutaneous infusion due to disease progression.
LESSONS: Continuous subcutaneous infusion lignocaine offers another therapeutic option in cutaneous T-Cell lymphoma-related intractable pruritus.
FUTURE RESEARCH: Prospective studies using validated assessment tools and systematic approaches to pruritus management are required.
Patients with neurologic illnesses are commonly encountered by palliative care (PC) clinicians though many clinicians feel uncomfortable caring for these patients. Understanding how to diagnose, treat, communicate with, and prognosticate for neurology patients will improve the confidence and competence of PC providers in the neurology setting. This article offers PC providers 10 useful tips that neurologists with PC training think all PC providers should know to improve care for patients with neurologic illness.
Background and aim: More than 50% of the liver should be drained in case of unresectable hilar liver stenosis; however, it remains unclear if the use of several types of drainage (endoscopic retrograde cholangiography and pancreatography, percutaneous-biliary drainage, endoscopic ultrasound biliary drainage (EUS-BD)), allowing better drainage, has an impact on survival. The aim of our study was to evaluate the percentage of liver drained and its correlation on survival whatever the drainage technique used.
Patients and methods: This study was a retrospective analysis of a prospective registry of patients with malignant drainage stenosis of the hilum. The quality of drainage was evaluated based on the percentage of liver segments drained, which was calculated by dividing the number of liver segments drained by the total number of liver segments. Drainage could be achieved via an endoscopic, EUS-guided or percutaneous route not associated with the procedure.
Results: Sixty patients (38 men) were included from January 2015 to July 2016. The mean patient age was 69.84 years. Stenosis was classified as type II for 17 (29%) patients, type III for 20 (34%) patients, and type IV for 22 (37%) patients. Histology revealed cholangiocarcinoma for 26 (43%) patients, metastatic disease from colorectal cancer for 15 (25%) patients and another cancer for 19 (32%) patients. The median survival time was five (2.3–12.3) months.
The percentage of liver segments drained had a significant prognostic impact on overall survival regardless of the technique used to drain the liver. The percentage of liver segments drained was dichotomized based on a threshold value of 80%, resulting in two groups (<80% and =80%). Univariate analysis of overall survival revealed that the patients with <80% of liver segments drained had significantly worse prognoses (hazard ratio (HR) = 3.25 (1.66–6.36), p < 0.001) than the patients with =80% of liver segments drained. This effect was confirmed in multivariate analysis (HR = 2.46 (1.16–5.23), p = 0.02).
The other factor that affected survival was invasion of <50% of the liver by the tumor.
A receiver operating characteristic curve was used to establish a correlation between patients receiving chemotherapy and the percentage of liver drained (area under the curve = 0.77 (0.65–0.88)).
Conclusion: The survival of patients with malignant stenosis of the biliary confluence is highly correlated with the percentage of liver segments drained, regardless of the technique used.