Caregiver Burden-Within and Without.

This essay describes the experience of an oncologist in India and palliative care involving grieving families and coconuts.

Impact of the Lockdown on Patients Receiving Maintenance Hemodialysis at a Tertiary Care Facility in Southern India - A Mixed-methods Approach.

Aims: The mass quarantine measures adopted to control the COVID-19 pandemic greatly impacted the lives of patients on haemodialysis in India. We used a mixed methods approach to study its effect on dialysis outcomes and the lived experience of haemodialysis patients during the lockdown. Methods: Quantitative data was collected from 141 subjects using a structured proforma to determine the impact of the lockdown on dialysis outcomes and travel expenses. Qualitative data collected through in-depth interviews with 9 patients by purposive sampling were recorded and transcribed to explore the lived experience of haemodialysis patients during lockdown. The cohort was followed up till October 31st 2020 for incidence of COVID-19, deaths, and dropouts. Results: The median increase in per day travel expense was 25%. Due to decrease in dialysis frequency, patients previously on thrice weekly haemodialysis experienced significant increase in pre-dialysis systolic blood pressure (P = 0.005) compared to those on twice weekly haemodialysis. Between March 25th and July 15th 2020, 12 patients (8.5%) required emergency dialysis sessions, and 4 patients (2.8%) required admissions for hypertensive emergencies. Four main themes emerged from thematic analysis of transcribed interviews: Travel inconveniences, uncertainty resulting in anxiety, financial burden and frequency change in dialysis leading to worsening of symptoms. Twenty-two patients (15.6%) were diagnosed with COVID-19, the first case diagnosed 33 days after the first 'unlock' phase. Conclusion: The lockdown was successful in delaying infection transmission but had unintended physical and psychosocial effects on haemodialysis patients.

'Sufficient Pain relief ' as a Practical Benchmark in Cancer Pain Management: A Prospective Study of Serial Pain Scores, Patient-rated Pain Relief and Perceived Sufficiency of Analgesics.

Objectives: Serial pain scores are used to guide pain management but there can be variability in what constitutes 'adequate' pain relief for an individual patient. We aimed to evaluate how patient-rated sufficiency of pain relief corresponded to pain scores, pain relief scores, and the felt need for increasing analgesics. Material and Methods: Baseline and follow-up scores on the 11-point numerical rating scale (11-NRS) and verbal rating scale were obtained for116 patients with cancer pain. Patients used the pain relief sufficiency rating (PRSR) to rate pain relief as 'no reduction,' 'some reduction, but not enough,' 'sufficient reduction,' and 'very good reduction.' They also rated analgesics as 'sufficient' or 'insufficient.' Receiver-operating characteristic (ROC) curve analysis was used to compare PRSR responses with follow-up pain scores, patient rated percentage pain relief, and the perceived need for an increase in analgesics. Results: The 11-NRS had an area under the ROC curve of 94.2% against the PRSR. A pain score of three provided the best cutoff to identify adequate pain relief (88.2% sensitivity and 85.7% specificity). Follow-up verbal pain scores corresponded to PRSR categories (severe pain: no reduction; moderate pain: some reduction; mild pain: sufficient reduction and no pain: very good reduction). The PRSR identified 97.3% of patients who wanted analgesics increased and 85% of those who said pain medications were sufficient. Conclusion: The PRSR is a brief, simple and intuitive measure to elicit patient perceptions on the sufficiency of pain relief. Our findings suggest that it might be a useful tool in pain and symptom management.

Choosing wisely: protocols, priorities and a postcard.

Can a young doctor without training in communication skills use empathy as a compass for making ethical decisions? This narrative reflects on a young boy left alone with a paralyzed dying father after six months of 'free' but futile treatment. Protocols should be weighed against prognosis and priorities when the disease is incurable.

Practical aspects of palliative care & palliative radiotherapy in incurable cervical cancer.

Cervical cancer is the most common cause of cancer-related deaths among economically disadvantaged women. The symptoms of pain, discharge, constipation, foul smell, insomnia and depression can be controlled with inexpensive medicines such as oral morphine, maintenance oral metronidazole, antidepressants and laxatives. These medications should be prescribed according to the palliative care guidelines and titrated to the individual patient's clinical response, pathophysiology, and metabolic parameters. A hypothetical clinical scenario illustrates some aspects of pain and symptom management, inter-disciplinary palliative care, medical ethics and communication needs in low-resource settings. Palliative radiotherapy is a cost-effective intervention to reduce vaginal discharge, bleeding, pressure effects and nociceptive or neuropathic pain caused by pelvic and para-aortic disease. The role of palliative radiotherapy in patients with malignant fistulae is discussed and the literature on hypo-fractionated pelvic radiotherapy is briefly reviewed.

Regular Low-Dose Oral Metronidazole Is Associated With Fewer Vesicovaginal and Rectovaginal Fistulae in Recurrent Cervical Cancer: Results From a 10-Year Retrospective Cohort.

PURPOSE: Anaerobic necrosis in cervical cancer can lead to malodor, fistulae, and treatment abandonment. In this retrospective cohort study, we examined the association between maintenance metronidazole and the incidence of malignant fistulae in recurrent cervical cancer. METHODS: We screened all cervical cancer records registered between 2007 and 2016 in the local palliative care database at Christian Medical College, Vellore, India. There were 208 eligible patients with post-treatment residual/recurrent pelvic disease. Among them, 76 had received oral maintenance metronidazole 200 mg once per day for 2 to 86 weeks (interquartile range, 4-16 weeks). RESULTS: Seventy-two patients developed at least one fistula. Forty-nine had vesicovaginal fistulae, 10 had rectovaginal fistuale, and 13 developed both types of fistulae. Patients on maintenance metronidazole had fewer fistulae (22.4% v 41.7%; P = .005), a longer median fistula-free survival (42.9 months v 14.1 months; P < .001), and a postrecurrence survival of 11.5 months versus 8.7 months (P = .112). We performed Cox multivariable proportional hazards regression analysis on the data from the subset of 146 patients observed until death. Bladder/rectal infiltration had a higher risk of fistula (HR, 5.24; P = .011), whereas distant metastases (HR, 2.46; P = .012) and Eastern Cooperative Oncology Group performance status greater than 1 (HR, 1.64; P = .008) were associated with a higher risk of death. Maintenance metronidazole was associated with a lower risk of fistula (hazard ratio [HR], 0.33; 95% CI, 0.16 to 0.67; P = .002) and a lower risk of death (HR, 0.56; 95% CI, 0.39 to 0.81; P = .002). CONCLUSION: Our data indicate that there is a significant inverse association between oral maintenance metronidazole and malignant fistulae in locally recurrent cervical cancer. The impact of this simple intervention on pelvic symptoms, fistulae, and survival should be evaluated in prospective studies.

Prognostic Factors of Malignant Pleural Effusion among Palliative Care Outpatients: A Retrospective Study.

BACKGROUND: Malignant pleural effusion (MPE) has varied survival and indicates advanced disease. LENT prognostic score is the first validated score used for MPE. This study assessed the role of LENT among palliative care cancer patients and assessed different patient, tumor, and treatment related factors that may affect survival. METHODS: A retrospective study of advanced cancer patients with MPE, seen in palliative care outpatient clinic (2013-2015) until death, was done. LENT prognostic score could be calculated in 15 patients. Patient, tumor, and treatment related factors that affect survival were assessed. RESULTS: The study included 48 patients (70.8% female; 29.2% male) with a median age of 53 years. Lung (41.7%) was the most common primary, and adenocarcinoma (44.7%) was the most common histology. The median overall survival (OS) was 14.5 months (interquartile range [IQR]: 5.25-32.75) and median survival time (ST) was 3 months (IQR: 1-7.75). ST was significantly low with poor Eastern Cooperative Oncology Group (ECOG) performance status (P = 0.002), bilateral effusion (P < 0.001), and with no oncological treatment after MPE diagnosis (P < 0.001). OS and ST were significantly low with lung primary (P = 0.006 and 0.02, respectively). Age, gender, breathlessness, tumor histology, lung metastasis, and interventions for MPE did not significantly affect survival. The median ST in the moderate and high risk LENT groups was 6 and 3 months, respectively (P = 0.16). CONCLUSION: ECOG performance status, bilateral effusion, and no oncological treatment after diagnosis of MPE were associated with poor ST. Lung primary was associated with shorter OS and ST. Small numbers precluded any definitive conclusion on the prognostic value of LENT in our group of patients, and hence larger studies are recommended.

Beyond Competence: Perspectives From Two Centuries.

A sense of failure and guilt can often be associated with the death of a patient. Using the Serenity Prayer as a framework, we present autobiographical narratives describing encounters that happened in Vellore, India over a hundred years apart. Powerlessness in the face of death, we suggest, is not the same as ignorance or incompetence. It could well be the breakthrough to a deeper wisdom and lasting empowerment.

Improving malodour management in advanced cancer: a 10-year retrospective study of topical, oral and maintenance metronidazole.

OBJECTIVES: To explore the relative effectiveness of topical or oral metronidazole used for malodour in necrotic cancers and to propose a protocol for metronidazole usage in managing malodour. METHODS: A retrospective case note review of the management of malodour over 10 years comparing outcomes with topical, intermittent and maintenance oral metronidazole. RESULTS: Among 179 patients treated for malodour, the commonest primaries were cervical (45%), and head and neck cancers (40%). Outcomes were poor during the period when only topical or intermittent oral metronidazole was used. Topical use gradually decreased (97% vs 55%) and the proportion of patients receiving maintenance oral metronidazole increased (0% in 2003-2004 vs 93% in 2011). Concurrently, there was reduction in documented malodour (12.5% of visits per patient in 2003-2004 vs 1.5% in 2011, p<0.01). CONCLUSIONS: Our data support formulary guidelines recommending maintenance metronidazole for recurrent malodour. Dimethyl trisulfide, a product of anaerobic necrosis causes malodour and can attract maggot-producing flies to decaying tissues. Therefore, to reduce anaerobic malodour in vulnerable settings, we propose a ladder for metronidazole titration. High-risk patients should start with 400 mg thrice daily ×7 days and continue 200 mg once daily. The SNIFFF severity (Smell-Nil, Faint, Foul or Forbidding) can guide follow-up dosage: 200 mg once daily to continue for nil or faint smell; breakthrough courses of 400 mg thrice daily ×1 week for foul smell and 2 weeks for forbidding smell, followed by 200 mg once daily.The effectiveness and limitations of maintenance metronidazole and the SNIFFF ladder should be prospectively evaluated.

The patient who 'must not be told': demographic factors associated with collusion in a retrospective study in South India.

BACKGROUND: Patients with cancer need adequate information about diagnosis, treatment options, and possible outcomes and prognosis to make therapeutic decisions. In cultures where the family plays the dominant role in healthcare decisions, doctors are often requested to collude in withholding distressing information from the patient. This challenging situation has not been well studied and there is limited knowledge on the different factors that may contribute to collusion. OBJECTIVE: To study the prevalence of collusion among adult cancer patients attending a palliative care outpatient clinic and the contributing factors. METHODS: The healthcare records of 306 adult cancer patients who had visited the palliative care outpatient clinic at least three times with follow-up until death were retrospectively reviewed. Details on information shared and why it was not shared were retrieved from the documentation in the communication sheet in the patient chart. The prevalence, sociodemographic and clinical factors that could contribute to collusion in doctor-patient communication were studied. RESULTS: Collusion was present in 40% of cases at the time of referral to the palliative care outpatient clinic (collusion regarding diagnosis in 18%; collusion regarding prognosis in 40%). Collusion was later addressed in 35%. Collusion was significantly higher among female patients (p=0.005), manual workers (p=0.035), those not accompanied by a spouse (p=0.000) and with no oncological treatment (p=0.001). CONCLUSIONS: Collusion regarding diagnosis or prognosis is common among cancer patients referred for palliative care. It was more prevalent among female patients, manual workers, patients who had not received oncological treatment, and patients not accompanied by a spouse.

Interventions for the treatment of metastatic extradural spinal cord compression in adults.

BACKGROUND: Metastatic extradural spinal cord compression (MESCC) is treated with radiotherapy, corticosteroids, and surgery, but there is uncertainty regarding their comparative effects. This is an updated version of the original Cochrane review published in theCochrane Database of Systematic Reviews (Issue 4, 2008). OBJECTIVES: To determine the efficacy and safety of radiotherapy, surgery and corticosteroids in MESCC. SEARCH METHODS: In March 2015, we updated previous searches (July 2008 and December 2013) of the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, EMBASE, CINAHL, LILACS, CANCERLIT, clinical trials registries, conference proceedings, and references, without language restrictions. We also contacted experts for relevant published, unpublished and ongoing trials. SELECTION CRITERIA: Randomised controlled trials (RCTs) of radiotherapy, surgery and corticosteroids in adults with MESCC. DATA COLLECTION AND ANALYSIS: Three authors independently screened and selected trials, assessed risk of bias, and extracted data. We sought clarifications from trial authors. Where possible, we pooled relative risks with their 95% confidence intervals, using a random effects model if heterogeneity was significant. We assessed overall evidence-quality using the GRADE approach. MAIN RESULTS: This update includes seven trials involving 876 (723 evaluable) adult participants (19 to 87 years) in high-income countries. Most were free of the risk of bias. Different radiotherapy doses and schedulesTwo equivalence trials in people with MESCC and a poor prognosis evaluated different radiotherapy doses and schedules. In one, a single dose (8 Gray (Gy)) of radiotherapy (RT) was as effective as short-course RT (16 Gy in two fractions over one week) in enhancing ambulation in the short term (65% versus 69%; risk ratio (RR) was 0.93, (95% confidence interval (CI) 0.82 to 1.04); 303 participants; moderate quality evidence). The regimens were also equally effective in reducing analgesic and narcotic use (34% versus 40%; RR 0.85, 95% CI 0.62 to 1.16; 271 participants), and in maintaining urinary continence (90% versus 87%; RR 1.03, 95% CI 0.96 to 1.1; 303 participants) in the short term (moderate quality evidence). In the other trial, split-course RT (30 Gy in eight fractions over two weeks) was no different from short-course RT in enhancing ambulation (70% versus 68%; RR 1.02, 95% CI 0.9 to 1.15; 276 participants); reducing analgesic and narcotic use (49% versus 38%; RR 1.27, 95% CI 0.96 to 1.67; 262 participants); and in maintaining urinary continence (87% versus 90%; RR 0.97, 0.93 to 1.02; 275 participants) in the short term (moderate quality evidence). Median survival was similar with the three RT regimens (four months). Local tumour recurrence may be more common with single-dose compared to short-course RT (6% versus 3%; RR 2.21, 95% CI 0.69 to 7.01; 303 participants) and with short-course compared to split-course RT (4% versus 0%; RR 0.1, 95% CI 0.01 to 1.72; 276 participants), but these differences were not statistically significant (low quality evidence). Gastrointestinal adverse effects were infrequent with the three RT regimens (moderate quality evidence), and serious adverse events or post-radiotherapy myelopathy were not noted.We did not find trials comparing radiotherapy schedules in people with MESCC and a good prognosis. Surgery plus radiotherapy compared to radiotherapyLaminectomy plus RT offered no advantage over RT in one small trial with 29 participants (very low quality evidence). In another trial that was stopped early for apparent benefit, decompressive surgery plus RT resulted in better ambulatory rates (84% versus 57%; RR 1.48, 95% CI 1.16 to 1.90; 101 participants, low quality evidence). Narcotic use may also be lower, and bladder control may also be maintained longer than with than RT in selected patients (low quality evidence). Median survival was longer after surgery (126 days versus 100 days), but the proportions surviving at one month (94% versus 86%; RR 1.09, 95% CI 0.96 to 1.24; 101 participants) did not differ significantly (low quality evidence). Serious adverse events were not noted. Significant benefits with surgery occurred only in people younger than 65 years. High dose corticosteroids compared to moderate dose or no corticosteroidsData from three small trials suggest that high-dose steroids may not differ from moderate-dose or no corticosteroids in enhancing ambulation (60% versus 55%; RR 1.08, 95% CI 0.81 to 1.45; 3 RCTs, 105 participants); survival over two years (11% versus 10%; RR 1.11, 95% CI 0.24 to 5.05; 1 RCT, 57 participants); pain reduction (78% versus 91%; RR 0.86, 95% CI 0.62 to 1.20; 1 RCT, 25 participants); or urinary continence (63% versus 53%; RR 1.18, 95% CI 0.66 to 2.13; 1 RCT, 34 participants; low quality evidence). Serious adverse effects were more frequent with high-dose corticosteroids (17% versus 0%; RR 8.02, 95% CI 1.03 to 62.37; 2 RCTs, 77 participants; moderate quality evidence).None of the trials reported satisfaction with care or quality of life in participants. AUTHORS' CONCLUSIONS: Based on current evidence, ambulant adults with MESCC with stable spines and predicted survival of less than six months will probably benefit as much from one dose of radiation (8 Gy) as from two doses (16 Gy) or eight doses (30 Gy). We are unsure if a single dose is as effective as two or more doses in preventing local tumour recurrence. Laminectomy preceding radiotherapy may offer no benefits over radiotherapy alone. Decompressive surgery followed by radiotherapy may benefit ambulant and non-ambulant adults younger than 65 years of age, with poor prognostic factors for radiotherapy, a single area of compression, paraplegia for less than 48 hours, and a predicted survival of more than six months. We are uncertain whether high doses of corticosteroids offer any benefits over moderate doses or indeed no corticosteroids; but high-dose steroids probably significantly increases the risk of serious adverse effects. Early detection; and treatment based on neurological status, age and estimated survival, are crucial with all treatment modalities. Most of the evidence was of low quality. High-quality evidence from more trials is needed to clarify current uncertainties, and some studies are in progress.

Creation of Minimum Standard Tool for Palliative Care in India and Self-evaluation of Palliative Care Programs Using It.

BACKGROUND: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. AIMS: (1) Creation of minimum National Standards for Palliative Care for India. (2) Development of a tool for self-evaluation of palliative care organizations. (3) Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. MATERIALS AND METHODS: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. RESULTS: Forty-nine (57%) palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. CONCLUSIONS: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services.

Nebulised furosemide in the palliation of dyspnoea in cancer: a systematic review.

BACKGROUND: Dyspnoea is experienced by approximately two-thirds of cancer patients at the end-of-life. Despite the use and assessment of various interventions, palliation of dyspnoea poses a clinical challenge. The benefit of nebulised furosemide in the palliation of dyspnoea among cancer patients remains uncertain. This systematic review was conducted to study the effectiveness of nebulised furosemide for dyspnoea in cancer, to ascertain the most appropriate dose and adverse effects, and to quantify the effects on respiratory rate, oxygenation status, observer-rated dyspnoea and opioid dose. METHODS: A systematic literature search of four databases (Ovid MEDLINE, EMBASE, the Cochrane Central Register of Controlled Trials database and CINAHL) was carried out to identify randomised controlled trials (RCTs) on the effectiveness of nebulised furosemide for dyspnoea in cancer patients. RESULTS: The review identified 91 articles of which two RCTs met the inclusion criteria. The included RCTs had sample sizes of 7 and 15, respectively. Neither of the RCTs showed an improvement in dyspnoea with nebulised furosemide. Meta-analysis was not possible as the RCTs measured different domains of dyspnoea using different tools. Neither RCT highlighted significant adverse effects. Other outcomes of interest were not studied in the RCTs. CONCLUSIONS: Evidence from this review, which is limited by the small number of RCTs and small sample size, does not show benefit with nebulised furosemide for the alleviation of dyspnoea in cancer. Adequately powered multicentre double-blinded RCTs are warranted to further define the potential role of this drug in the palliation of dyspnoea in advanced cancer.

Can symptom relief be provided in the home to palliative care cancer patients by the primary caregivers? An Indian study.

BACKGROUND: A large proportion of cancer deaths occur in the developing world, with limited resources for palliative care. Many patients dying at home experience difficult symptoms. OBJECTIVE: The objective of this study was to assess the feasibility of a structured training program on symptom management along with an acute symptom management kit for primary caregivers of cancer patients receiving home care. METHODS: Descriptive design was used. Thirty primary caregivers of cancer patients attending the palliative care clinic in Vellore, South India, were provided training on the administration of drugs for acute symptoms. A plastic box with partitions for drugs specific to symptom was provided. On follow-up visits, the usage of the kit, drugs used, and routes of administration were noted. A structured questionnaire with a 4-point scale was used to assess primary caregiver views and satisfaction. RESULTS: Of primary caregivers, 96.7% used a kit. The common medications used were morphine, metoclopramide, dexamethasone, and benzodiazepines. Seventy-three percent of primary caregivers administered subcutaneous injections at home. Hospital visits for acute symptoms reduced by 80%; 90% were satisfied with the training received; 73% stated it was not a burden to treat the patient at home. CONCLUSION: The training program and acute symptom management kit were favorably received and appropriately used by caregivers of diverse backgrounds. Rural backgrounds and illiteracy were not barriers to acceptance. IMPLICATION FOR PRACTICE: Healthcare professionals should train caregivers during hospital visits, empowering them to manage acute symptoms and provide simple nursing care. This is doubly important in countries where resources are limited and palliative care facilities scarce.

Neuropathic Pain due to Fibromatosis: Does Anticancer Treatment Help?

Desmoid fibromatosis, although histologically benign, infiltrates local structures. The involvement of neural structures can lead to difficult neuropathic pain and the escalating use of analgesics. We report a patient with desmoid fibromatosis of the chest wall causing brachial plexus infiltration. As the tumor was locally invasive and unresectable, he was treated with radiation therapy and oral tamoxifen. On follow-up, there was significant pain relief, sustained reduction in the tumor size, and reduced analgesic requirement. Antineoplastic treatments like local radiation therapy and targeted systemic therapy with hormones or other agents can be considered in the management of selected unresectable desmoid fibromatosis to improve symptom control and reduce polypharmacy.