Head and neck cancer affects vital functions of speech, swallowing, breathing, and appearance. Overall survival remains poor and symptom burden is high for both patients with incurable disease at the end of life and for long-term survivors. Early and concurrent palliative care helps guide treatment decision making and support quality of life during and after treatment. Both narrative competence and directive counsel can affect the concordance of patient goals and tolerance of treatment and outcomes.
Background: Palliative care (PC) improves the quality of life of patients with advanced cancer. Our aim was to describe PC referral among patients with advanced cancer, and associated outcomes in an academic medical centre.
Methods: We reviewed the medical records of 536 inpatients with cancer who had died in 2010. Our retrospective study compared patients who accessed PC services with those who did not. Statistical analysis was conducted using non-parametric tests due to non-normal distribution. We also conducted a multivariate analysis using a logistic regression model including age, gender, type of cancer and metastatic status.
Results: Out of 536 patients, 239 (45%) had PC referral. The most common cancer types were respiratory (22%) and gastrointestinal (19%). Patients with breast cancer (OR 23.76; CI 6.12 to 92.18) and gynaecological cancer (OR 7.64; CI 2.61 to 22.35) had greater PC access than patients with respiratory or haematological cancer. Patients referred to PC had significantly less chemotherapy in the last 2 weeks of life than non-referred patients, with 22 patients (9%) vs 59 (19%; p<0.001). PC-referred patients had significantly fewer admissions to intensive care units in the last month of life than non-referred patients, with 14 (6%) vs 58 (20%; p<0.001).
Conclusions: There was a large variation in access to PC according to the type of cancer. There is a need to improve collaboration between the PC service and the respiratory, cancer and haematology specialists. Further research will be required to determine the modality and the impact of this collaboration.
PURPOSE: To describe the practices and opinions of specialized palliative care (SPC) physicians regarding early palliative care for patients with cancer, determine characteristics associated with receiving early referrals; and solicit opinions regarding renaming the specialty "supportive care."
METHODS: The survey was distributed by mail and e-mail to physicians who had previously self-identified as providing palliative care. SPC physicians were defined as receiving palliative care referrals from other physicians and not providing palliative care only for their own patients.
RESULTS: The response rate was 71% (531/746), of whom 257 (48.4%) practiced SPC. Of these SPC physicians, 84% provided mainly cancer care; >90% supported early palliative care referral in oncology and had referral criteria facilitating this, but only 20% received early referrals (>6-month prognosis). There was ambivalence regarding caring for patients with full resuscitation status and responsibility for managing cancer treatment-related complications. SPC physicians receiving early referrals were more likely to be female (p=0.02) and have a postgraduate degree (p=0.02), and less likely to provide mainly cancer care (p=0.03) and to agree that patients should stop chemotherapy before referral (p=0.009). Although 60% agreed that patients perceive the term "palliative care" negatively and 39% believed a name change to supportive care would encourage early referral, only 21% supported renaming the specialty.
CONCLUSIONS: Although most SPC physicians supported early palliative care in oncology, the timing of referrals was often late, and was associated with characteristics of SPC physicians. Few SPC physicians supported renaming palliative care.
Heart failure remains an ultimately fatal condition that causes significant symptoms as it progresses. The involvement by palliative services in this patient group has been suboptimal despite many years of guidance from international cardiac societies who recommend a palliative focus for these patients. At Hutt hospital, we have implemented a cardiology supportive care clinic in an attempt to improve the care of our advanced heart failure patients. Our initial experience is that the clinic has resulted in improvements in communication with patients and their families. Management plans and goals of care have been clearly documented, and there has been clarification of roles between the key stakeholders who manage end-stage heart failure patients. A formal integrated palliative approach has been helpful for our end-stage heart failure patients and there is potential for this concept to be beneficial for other end-stage medical conditions.
Background: Early specialized palliative care improves quality of life of patients with advanced cancer, and guidelines encourage its integration into standard oncology care. However, many patients fail to obtain timely palliative/supportive care evaluations, particularly in limited-resource settings. We aimed to determine the proportion of patients with advanced cancer who received an assessment of symptoms and were referred to supportive and palliative care services during the first year after diagnosis in a Mexican hospital.
Methods: Individuals with newly diagnosed advanced solid tumors and 1 year of follow-up at the oncology clinics in the Instituto Nacional de Ciencias Medicas y Nutricion Salvador Zubiran in Mexico City from October 2015 to April 2016 were included in this retrospective study.
Results: Seventy-seven patients were included. Forty-two (54.5%) were referred to the various supportive care services during the first year after diagnosis, and 23 (29.8%) were referred to the palliative care clinic. The most commonly assessed symptoms by oncologists were pain (77.9%), anorexia (74.0%), fatigue (68.8%), and nausea (55.8%), while depression/anxiety were evaluated in 10 (12.9%) patients. The oncologist offered to clarify treatment goals in 39 (50.6%) cases and evaluated the understanding of diagnosis/illness and prognosis in 22 (28.5%).
Conclusion: Palliative and supportive care services were widely underutilized, which may be related to a lack of standardized symptom assessments and poor end-of-life communication. Novel strategies are needed to improve the implementation of tools for systematic symptom assessment and to optimize the integration of supportive care interventions into oncology care in developing countries.
BACKGROUND: The use of cannabis by cancer patients has become increasingly common. With expanding access to medical cannabis, unsanctioned cannabis use is likely to increase. Despite this, the extent to which patients seeking specialized palliative or supportive care for cancer-related symptoms are actively using cannabis has not been well established.
OBJECTIVE: We sought to determine the extent to which patients seeking specialized symptom management were using cannabis and to compare the severity of cancer-related symptoms between users and nonusers.
METHODS: We conducted a retrospective review of objectively measured tetrahydrocannabinol (THC) and subjectively reported cannabis use, its demographic and clinical correlates, and patient-reported symptoms in 816 cancer patients in active treatment referred to a supportive/palliative care outpatient clinic for specialized symptom management between January 2014 and May 2017.
RESULTS: Nearly one-fifth (19.12%) tested positive for THC on urine drug testing. Users were younger, more likely to be men, single, and to not have a history of cigarette smoking. Users also were likely to be more recently diagnosed and to have received radiotherapy. Certain moderate-to-severe symptoms, such as lack of appetite, shortness of breath, tiredness, difficulty sleeping, anxiety, and depression, were associated with use after accounting for sociodemographic and clinical differences between cannabis users and nonusers.
CONCLUSIONS: Findings suggest patients seeking specialized symptom management are self-treating with cannabis, despite the lack of high-quality evidence for its use in palliative care. Unsanctioned use is likely to increase in cancer patients. Accurate information is urgently needed to help manage patient expectations for its use and increase understanding of risks and benefits.
PURPOSE: Traditional and complementary medicine (T&CM) use in children with cancer is well established among high-income, upper middle-income, low-middle-income, and low-income countries (HIC, UMIC, LMIC, LIC, respectively). In HIC, a developing body of evidence exists for several T&CM therapies; however, evidence in other income settings is less well described despite a significantly higher use when compared to reports from HIC. The aim of this systematic review was to evaluate the evidence for T&CM for a variety of supportive care indications among children with cancer.
METHODS: We performed a systematic review following the PRISMA guidelines of randomized, controlled clinical trials from inception through September 2016. Our eligibility criteria were limited to T&CM studies performed in children and adolescents undergoing treatment for a pediatric malignancy.
RESULTS: Of 6342 studies identified, 44 met inclusion criteria. Two clinical trials reported on acupuncture, 1 reported on aromatherapy, 9 evaluated massage therapy, and 32 reported on dietary supplements. Twenty-two studies were performed in HIC, 15 in UMIC, and 7 in LMIC. T&CM therapies were most commonly investigated for the prevention or management of mucositis, weight loss, and febrile neutropenia. Encouraging results were reported for select interventions; however, the majority of studies were classified as poor to fair quality.
CONCLUSION: Our search revealed numerous clinical studies investigating the use of T&CM for supportive care purposes in pediatric oncology in HIC, UMIC, and LMIC. Although limited, these results could inform supportive care resource allocation and indicate where T&CM may serve to fill gaps where access to care may be limited.
The Supportive Care Nursing Clinical Protocol (SCNCP) was developed to guide holistic nursing care for seriously ill hospitalized patients. The SCNCP uses national guidelines and evidence-based interventions as its foundation. Seriously ill patients may require palliative care, which is synonymous with supportive care. Acute care nurses may not be proficient in providing holistic supportive care for patients with life-limiting illness. At a 670-bed public acute care hospital, palliative care consultation requires a physician order and palliation may arrive late in an illness. Independent nursing interventions can contribute to the alleviation of suffering. Evidence-based interventions used in the SCNCP include using computer applications for breathing exercise (relaxation and mindfulness), topical applications for alleviating thirst, and hand-held fans for dyspnea. The SCNCP is projected for implementation (Spring 2017). The SCNCP will be evaluated for effectiveness after 6 months of implementation. Key indicators for successful implementation include increased nursing knowledge of supportive care and the frequency of protocol implementation as evidenced in the electronic health record. Eventually, the SCNCP will be implemented as the standard for supportive care of the seriously ill for all hospitals in the health system network.
Purpose: The aim of this study was to compare symptom expression in advanced cancer patients with depression and anxiety and in patients with no such symptoms.
Methods: Secondary analysis of a previous study assessing the role of an acute palliative supportive care unit (APSCU) in a comprehensive cancer center. Patients completed the Edmonton Symptom Assessment System (ESAS) at admission (T0) and 7 days after or at discharge (T7).
Results: Three hundred-fourteen consecutive cancer patients admitted to the APSCU were surveyed. Eighty-six and 66 patients improved their level of depression and anxiety, respectively (passing from = 4 to 0â€“3, from T0 to T7), after that palliative care intervention resulted in a significant improvement of the other symptoms. Changes were statistically significant for both symptoms (P < 0.0005). Patients admitted for uncontrolled pain were more likely to be anxious, while patients admitted for other symptoms or end-of-life care were more likely to be depressed. The presence of anxiety and depression (= 4/10 on ESAS) was significantly associated with a higher level of symptom expression at admission and at T7 (P < 0.0005). In patients presenting both psychological symptoms, symptom expression was significantly more relevant in comparison with patients not reporting moderate-severe psychological symptoms. Pain and depression were independently associated with anxiety at T0. Variables independently associated with depression at T0 were drowsiness, appetite, and anxiety.
Conclusions: Psychological symptoms of ESAS concur to hyper-express some symptoms and make symptom control more difficult. A clear association between anxiety and depression exists.
AIM: The aim of this study was to assess the factors which influence the care pathway after discharge from an acute palliative supportive care unit (APSCU).
METHODS: Patients' demographics, indications for admission, kind of admission, the presence of a caregiver, awareness of prognosis, data on anticancer treatments in the last 30 days, ongoing treatment (on/off or uncertain), the previous care setting, analgesic consumption, and duration of admission were recorded. The Edmonton Symptom Assessment Scale (ESAS) at admission and at time of discharge (or the day before death), CAGE (cut down, annoy, guilt, eye-opener), and the Memorial Delirium Assessment Scale (MDAS), were used. At time of discharge, the subsequent referral to other care settings (death, home, home care, hospice, oncology), and the pathway of oncologic treatment were reconsidered (on/off, uncertain).
RESULTS: A total of 314 consecutive cancer patients admitted to the APSCU were surveyed. Factors independently associated with on-therapy were the lack of a caregiver, home discharge, and short hospital admission, in comparison with off-treatment, and less admission for other symptoms, shorter hospital admission, discharge at home, and better well-being, when compared with "uncertain." Similarly, many factors were associated with discharge setting, but the only factor independently associated with discharge home was being "on-therapy."
CONCLUSIONS: The finding of this study is consistent with an appropriate selection of patients after being discharged by an APSCU, that works as a bridge between active treatments and supportive/palliative care, according the concept of early and simultaneous care.
Purpose: Few studies have investigated nutrition impact symptoms and eating-related distress among advanced cancer patients and their families. This is a questionnaire survey to examine the severity of nutrition impact symptoms and the prevalence of eating-related distress among them in palliative and supportive care settings.
Methods: Questionnaires for patients and their families were preliminarily developed. We selected 16 common symptoms of advanced cancer, i.e., 9 symptoms of the ESAS-r and 7 of the PG-SGA. Each questionnaire concerning eating-related distress consisted of 12 items.
Results: A total of 140 out of 147 patients responded (95.2%). They were classified into two groups: (1) non-cachexia/pre-cachexia (n = 57) and (2) cachexia/refractory cachexia (n = 83). The top 3 out of 16 symptoms in all patients were feeling of well-being, lack of appetite, and tiredness. Significant differences were observed in 8 symptoms between the two groups: tiredness (p = 0.007), drowsiness (p = 0.007), lack of appetite (p < 0.001), early satiety (p = 0.001), diarrhea (p = 0.025), abnormal taste (p = 0.02), difficulty swallowing (p = 0.002), and feeling of well-being (p = 0.003). Regarding eating-related distress in patients, significant differences were observed in all items, except for 2, between the two groups. Concerning eating-related distress in families, significant differences were observed in all items between the two groups.
Conclusion: Advanced cancer patients with cachexia have more severe nutrition impact symptoms than those without cachexia, and patients with cachexia and their families have greater eating-related distress than those without cachexia.
Objectives: To determine the extent of end-of-life suffering and predictors of high symptom prevalence in the last one year of life in patients with systemic rheumatic diseases (SRDs) and the extent of supportive care received.
Methods: We identified adult patients with SRDs who died between 1 April 2006 and 1 April 2016. We collected data within 1 year before their death, on the following: (i) cumulative symptom prevalence, (ii) rates of Advance Care Planning (ACP), Do-Not-Resuscitate (DNR) orders and referral to a palliative physician. We analyzed the predictors of total symptom prevalence and palliative physician referral.
Results: Of the 161 patients studied, 34.2% had rheumatoid arthritis and 21.6% had systemic lupus erythematosus. Pain (81.4%), anorexia (80.1%) and dyspnea (77%) afflicted the majority of patients. On multivariate analysis, patients of the following profile had higher total symptom prevalence: (i) older age (ß = 0.027, SE = 0.013, p = 0.044); (ii) more comorbidities measured by the Charlson Comorbidity Index (ß = 0.192, SE = 0.159, p = 0.044); (iii) more admissions (ß = 0.263, SE = 0.090, p = 0.004) and (iv) recurrent infections (ß = 0.923, SE = 0.423, p = 0.031). Five patients (3.1%) received ACP and 25 (15.5%) were referred to a palliative physician. The median time between referral to palliative medicine and death was 8 days (IQR0-19). Of the 106 (67.5%) who had DNR orders, the median time between DNR and death was 3 days (IQR 0–10).
Conclusions: Palliative and supportive care is relevant to patients with SRDs at the end-of-life. These patients experienced high physical suffering, particularly those who were elderly, with more comorbidities, hospital admissions and recurrent infections. Rheumatologists and physicians caring for patients with SRDs must be empowered to provide supportive care to these patients at the last phase of life, particularly by facilitating early ACP.
The aim of this study is to determine the accuracy, feasibility and acceptability of the surprise question (SQ) in combination with a clinical prediction tool (Supportive and Palliative Care Indicator Tool (SPICT)) in identifying residents who have palliative care needs in residential aged care facilities (RACFs) in Australia. A prospective cohort study in two RACFs containing both high-level care (including dementia) and low-level care beds. Directors of Nursing screened 187 residents at risk of dying by 12 months using first the SQ, and if positive, then the SPICT. At 12-months follow-up, deaths, hospitalisations, use of palliative care services, end-of-life care and clinical indicators were recorded. The SQ had a sensitivity of 70%, a specificity of 69.6%, a positive predictive value of 40.6% and a negative predictive value of 88.7% for death. All residents identified by the SQ had at least two general indicators of deterioration, while 98.8% had at least one disease-specific indicator on the SPICT. The SPICT marginally increased the ability to identify residents in need of proactive end-of-life planning. A combination of the SQ and the SPICT is effective in predicting palliative care needs in residents of aged care facilities, and may trigger timely care planning.
AIM: The aim of this study was to investigate the relationship between delirium and symptom expression in patients with advanced cancer admitted to an acute supportive/palliative care unit (ASPCU).
METHODS: A consecutive sample of patients with advanced cancer who were admitted to an ASPCU was prospectively assessed for a period of 10 months. The Edmonton Symptom Assessment Scale (ESAS) and the MDAS (Memorial Delirium Assessment Scale) were measured at admission (T0) and after 7 days of palliative care (T7).
RESULTS: Two hundred forty-six patients had complete data regarding MDAS measurements, at either T0 and T7. Of these, 75 (30.5%) and 63 patients (25.6%) had delirium at T0 and after a week of palliative care (T7), with a decrease in the frequency of delirium of 4.9% (from 30.5% to 25.6%); that means that 16% of patients with delirium improved their cognitive status after initiation of palliative care. Intensities of pain, depression, poor well-being, and global ESAS were significantly higher in patients with delirium. Patients who did not have delirium at T0 but developed delirium during admission after 1 week of palliative care had a higher level of symptom expression for pain, weakness, nausea, anxiety, dyspnea, appetite, and consequently global ESAS. Patients who did not develop delirium at any time had a relevant decrease in intensity of all ESAS items after 1 week of palliative care. The decrease of symptom intensity was significant for pain, insomnia, appetite, poor well-being, and global ESAS in patients with delirium either at T0 and T7, although these differences were less relevant than those observed in patients without delirium. In patients with delirium at T0 who improved their cognitive function at T7 (no delirium), significant changes were found in most ESAS items.
CONCLUSION: Symptom expression is amplified in patients with delirium, whereas patients without delirium may be more responsive to palliative treatments with a significant decrease in intensity of ESAS items.
IMPLICATIONS FOR PRACTICE: Symptom expression is amplified in patients with cancer who have delirium, whereas patients without delirium may be more responsive to palliative treatments with a significant decrease in symptom intensity.
BACKGROUND:: Enhanced supportive care (ESC) promotes the earlier implementation of supportive care within cancer care. While earlier supportive care has been demonstrated to improve patient outcomes, the model of delivery is variable. The Clatterbridge Cancer Centre has developed a multi-professional delivered model with clinical nurse specialists providing ongoing patient review and care.
METHOD:: A retrospective single-system design was used to assess longitudinal changes in Integrated Palliative Care Outcome Scale (IPOS) scores as indicators of quality of life. For other outcomes, a retrospective case control analysis was undertaken.
RESULTS:: Statistically significant improvements in all IPOS scores were observed for patients attending ESC. Compared to controls, quantitative outcomes included prolonged survival and reduced chemotherapy-related mortality. Multi-professional delivered ESC successfully improves quality of life and outcomes.
BACKGROUND: To assess the response to ketamine in patients with difficult pain syndromes.
METHODS: The charts of patients with uncontrolled pain despite opioid dose escalation of at least two opioids or a combination of them, selected for a burst of ketamine and midazolam were reviewed. One hundred mg/day of ketamine and midazolam 15 mg/day by a continuous intravenous infusion for about 48 hours was offered to patients.
RESULTS: Forty-four patients received a burst of ketamine. Ten patients did not achieve any improvement. Pain intensity decreased from a mean of 7.8 (SD, 1.6) to 2.8 (SD, 1.3) (P<0.0005). The outcome was considered optimal, good, and mild in 24, 9, and 1 patients, respectively. Adverse effects attributable to ketamine did not have relevant intensity and no patient discontinued the treatment due to psychomimetic adverse effects.
CONCLUSIONS: This data suggests that a burst of ketamine and midazolam at low doses, may reverse an unfavourable opioid response, assisting the opioid switching. Although the role of ketamine remains controversial, it should not deter physicians to do not use that in specific conditions.
CONTEXT: In the intensive care unit (ICU), 14% of patients meet criteria for specialized palliative care, but whether subgroups of patients differ in their palliative care needs is unknown.
OBJECTIVES: To use latent class analysis (LCA) to separate ICU patients into different classes of palliative care needs, and determine if such classes differ in their palliative care resource requirements.
METHODS: Retrospective cohort study of ICU patients who received specialized palliative care, August 2013 – August 2015. Reason(s) for consultation were extracted from the initial note and entered into a LCA model to generate mutually exclusive patient classes. Differences in “high use” of palliative care (defined as having = 5 palliative care visits) between classes was assessed using logistic regression, adjusting for age, race, Charlson comorbidity index and length of stay.
RESULTS: In a sample of 689 patients, a four-class model provided the most meaningful groupings: 1) Pain and Symptom Management (n=218, 31.6%), 2) Goals of Care and Advance Directives (GCAD) (n=131, 19.0%), 3) All Needs (n=112, 16.3%) and 4) Supportive Care (n=228, 33.1%). In comparison to GCAD patients, all other classes were more likely to require "high use" of palliative care, (adjusted odds ratio (aOR) 2.61, [1.41-4.83] for "All Needs", aOR 2.01 [1.16-3.50] for "Pain and Symptom Management", aOR 1.94 [1.12-3.34] for "Supportive Care").
CONCLUSION: Based on the initial reason for consultation, we identified four classes of palliative care needs amongst critically ill patients, and GCAD patients were least likely to be high-utilizers. These findings may help inform allocation of palliative care resources for this population.
INTRODUCTION: Palliative care remains underutilized despite evidence supporting its value. Multiple professional organizations have endorsed broader and earlier access to palliative care, yet barriers exist that impede successful implementation of palliative care. We report on development of an ambulatory palliative medicine practice (Supportive Oncology) embedded within an academic cancer center.
METHODS: An incremental strategy was used to ensure the sustainability of the practice. A needs assessment of oncologists gauged perceptions of unmet patient needs, attitudes toward palliative care, reasons for referrals, and vision of a relationship with palliative care. Clinical outcomes included practice volume, healthcare utilization, and hospice enrollment.
RESULTS: Key themes identified included diverse palliative care needs, variable reasons for referral, and lack of consensus on palliative care's role as a consultant or comanagement model. Supportive oncology visits were associated with a 12% reduction in emergency department visits and a 39% decrease in the cost of each visit. Percentage of hospice enrollment 30 days before death exceeded the national average, and was twice the local average.
CONCLUSION: Providing ambulatory palliative care simultaneously with disease-directed oncologic care improves healthcare value. Despite regional variations in hospital culture and patient populations, the model described here can be adapted in a variety of settings. More research is needed to identify the optimal model of ambulatory palliative care delivery, including type and structure of integration, needs of patients, and level of generalist-level palliative care provided by oncologists.