Indian Journal of Palliative Care
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Coverpage
January-March 2019
Volume 25 | Issue 1
Page Nos. 1-167

Online since Thursday, January 31, 2019

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EDITORIAL  

Bringing palliative care and neurology together: Stroke by stroke Highly accessed article p. 1
Roop Gursahani
DOI:10.4103/IJPC.IJPC_3_19  
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ORIGINAL ARTICLES Top

Factors associated with surrogate self-efficacy in decision-making for patients with end-stage renal disease p. 3
Stefanie Danielle Piña-Escudero, Roberto De Jesús García-Avilés, Armando Iván Fajardo-Juárez, César Urtiz López, Ana Karene Del Moral-Trejo, Pedro Manuel Ramírez-Ambriz, Alejandro Tovar-Serrano, García-Lara Juan Miguel Antonio
DOI:10.4103/IJPC.IJPC_147_18  
Aim: The aim of the study is to assess which factors are associated with self-efficacy for making these decisions in surrogates of end-stage kidney disease patients. Materials and Methods: Cross-sectional study conducted in the hemodialysis clinic of a private hospital in Mexico City. A total of 124 surrogates of patients in hemodialysis were included in the study. Self-efficacy for decision-making was assessed with the Family Decision-Making Self-Efficacy Scale. As factors related to decision-making self-efficacy, sociodemographic data, health information, and professional help received for dealing with end-of-life issues were assessed in both patients and surrogates. Functional status and advanced directives of the patient as well as prior experience in decision-making of the surrogates were also included. Logistic regression models were used to establish the associations. Results: The mean age of participants was 49.4 years (standard deviation: 14). Factors associated to decision-making self-efficacy were awareness of the surrogate about the terminal disease of the patient (P < 0.001), prior conversation between the surrogate and the patient about end-of-life preferences (P = 0.037), time between the patient was told dialysis was required and accepting it inferior to 1 month (P = 0.016), and visual impairment of the patient (0.040). Conclusions: This study provides information of which factors are associated with self-effectiveness in surrogates of terminally ill renal patients so that strategies based on these considerations might be implemented in the future.
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Communication, the key in creating dignified encounters in unexpected sudden death – With stroke as example p. 9
Ĺsa CU Rejnö, Linda K Berg
DOI:10.4103/IJPC.IJPC_117_18  
Aim: The aim of this study was to illuminate the communication and its meaning in unexpected sudden death with stroke as example, as experienced by stroke team members and next of kin. Subject and Methods: The study has a qualitative design. Secondary analysis of data from four previous interview studies with stroke team members; physicians, registered nurses, and enrolled nurses from the stroke units (SU) and next of kin of patients who had died due to acute stroke during hospital stay were utilized. Results: Communication is revealed as the foundation for care and caring with the overarching theme foundation for dignified encounters in care built-up by six themes illuminating the meaning of communication in unexpected sudden death by stroke. Conclusion: Communication shown as the foundation for dignified encounters in care as experienced by stroke team members and next of kin enables the patient to come forth as a unique person and uphold absolute dignity in care. Acknowledging the next of kin's familiarity with the severely ill patient will contribute to personalizing the patient and in this way be the ground for a person centeredness in care despite the patients' inability to defend their own interests. Through knowledge about the patient as a person, the foundation for dignified care is given, expressed through respect for the patient's will and desires and derived through conversations between carers and next of kin.
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Factors associated with physical and psychosocial problems among Indian stroke survivors p. 18
Mohit Sharma, Mohan Lal, Tejbir Singh, Shyam Sundar Deepti
DOI:10.4103/IJPC.IJPC_106_18  
Background: Rehabilitative services in India are inadequate in dealing with the physical and psychosocial problems faced by stroke survivors. The present study assessed these problems and the associated sociodemographic factors. Methods: Discharged stroke patients were interviewed at home. Logistic regression analysis assessed associations between patient variables and their problems. Results: We interviewed 127 stroke patients. Patients with modified Rankin Scale score higher than 3 were more likely to have complaints of pain (odds ratio [OR] = 2.21, 95% confidence interval [CI] = 1.03–4.33), sleeping difficulties (OR = 2.78, 95% CI = 1.34–5.78), and feelings of hopelessness (OR = 2.92, 95% CI = 1.23–6.93). Patients aged 60 years or above were more likely to have feelings of helplessness (OR = 3.64, 95% CI = 1.23–10.75) and hopelessness (OR = 3.28, 95% CI = 1.02–10.54). Male patients were more likely to have feelings of hopelessness (OR = 2.88, 95% CI = 1.06–7.80). Patients residing in rural areas had higher odds of having thoughts of death (OR = 17.18, 95% CI = 1.98–153.93). Married patients were more likely to face difficulty in asking for help (OR = 4.39, 95% CI = 1.19–16.15) and preferred home-based care (OR = 3.95, 95% CI = 1.11–14.05). Patients educated above 2nd grade were more likely to have feelings of hopelessness (OR = 6.31, 95% CI = 2.17–17.29) and anger (OR = 3.35, 95% CI = 1.39–8.07). Employed patients were more likely to have feelings of helplessness (OR = 1.13, 95% CI = 1.03–8.54). Conclusions: Sociodemographic variables of stroke patients can predict their physical and psychosocial problems, which can help the health-care professionals optimize rehabilitation strategies. There is an urgent need of expert rehabilitative and palliative services in India.
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Conspiracy of silence in palliative care: A concept analysis Highly accessed article p. 24
Paula Lemus-Riscanevo, Sonia Carreño-Moreno, Mauricio Arias-Rojas
DOI:10.4103/IJPC.IJPC_183_18  
Background and Aim: With chronic diseases on the rise, there is a growing demand for palliative care. The global landscape of the integration of palliative care into health-care systems is incipient, which leads to a lack of social awareness of this reality and consequently, to communication failures, particularly a conspiracy of silence. The aim of this study was to analyze the concept of conspiracy of silence in palliative care. Materials and Methods: Walker and Avant method of concept analysis was used. Review and synthesis of literature supported the analysis process. Forty-seven articles were analyzed. Results: Results showed that the conspiracy of silence in palliative care is a communication failure, typical of limited life expectancy prognosis, and involves patients, their families, and health-care teams. Lack of autonomy, overburden, family malfunctioning and coping, and health-care dehumanization are consequences of the conspiracy of silence in palliative care. Conclusions: The present study had found that scales to measure this concept as well as interventions that consider important factors in the communication process in palliative care identified in this analysis are needed.
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Development of a consensus syllabus of palliative medicine for physicians in Japan using a modified Delphi method Highly accessed article p. 30
Akihiro Sakashita, Mariko Shutoh, Ryuichi Sekine, Takayuki Hisanaga, Ryo Yamamoto
DOI:10.4103/IJPC.IJPC_122_18  
Context: Although palliative care is rapidly being disseminated throughout Japan as a result of government policy, a systematic syllabus of palliative medicine for physicians has not been developed. Aims: This study aimed to develop a Japanese national consensus syllabus of palliative medicine for physicians. Design: We used a modified Delphi method to develop the consensus syllabus. Methods and Setting: We created a Delphi panel by selecting 20 expert eligible panelists consisting of Diplomate or Faculty of the Specialty Board of Palliative Medicine and certified by the Japanese Society for Palliative Medicine. We inducted external reviewers from 11 palliative care-related organizations. Results: Among 20 experts surveyed, 20 (100%) responded over all rounds. Ten (50%) participated in a panel meeting. In the first round, 179 of 179 (100%) learning objectives were judged to be appropriate and 5 of 179 (3%) learning objectives were judged to be too difficult. In the panel meeting, 25 learning objectives were excluded, three new learning objectives were added, and 15 learning objectives were reworded. In the second round, 18 of 18 (100%) learning objectives were judged to be appropriate. The final version of the syllabus developed consists of 157 specific behavioural objectives and 22 general instructional objectives across 22 courses. Conclusions: We have developed the first national consensus syllabus of palliative medicine for physicians in Japan. Based on this syllabus, a training program on palliative medicine will be established by training facilities in Japan, and physicians will be able to practice specific palliative care.
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The need for palliative care in adults in Nepal: Projections based on modeling mortality data p. 41
Eleanor M Swarbrick, Mark AC Pietroni, Daniel M Munday
DOI:10.4103/IJPC.IJPC_177_18  
Aims: With noncommunicable diseases rising in prevalence, Nepal has a significant need for palliative care, but little research has been conducted to evaluate this in depth. This study aimed to generate a quantified estimate of the projected need for palliative care in Nepal. Subjects and Methods: The World Health Organization mortality rates were multiplied by the percentage pain prevalence for each disease, to produce an estimate, by disease, of the number of adults requiring palliative care at the end of life. These projections were then broken down for the rural and urban populations. Experts were consulted on the findings to explore how their insight from experience compared to the figures generated. Results: Estimates found that there were a total of 58,000 adults needing palliative care in Nepal in 2012. Cardiovascular disease represented the greatest need (21,249) followed by cancer and chronic obstructive pulmonary disease. The majority of those requiring palliative care were found to be in rural areas. However, the majority of provision currently is for cancer in urban areas. Professionals consulted felt that the results were likely to be representative, although many responded that this was a minimum estimate and with more raw data and more diseases included, the figures could be far higher. Conclusions: The need for palliative care is great and is mostly represented by cardiovascular and respiratory disease in rural areas. Provision must be adapted and developed to meet this need, but more primary data is needed to inform such decisions.
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Validity and reliability of 11-face faces pain scale in the Iranian elderly community with chronic pain p. 46
Reza Fadayevatan, Mahtab Alizadeh-Khoei, Salaheddin Taleb Hessami-Azar, Farshad Sharifi, Marjan Haghi, Bijan Kaboudi
DOI:10.4103/IJPC.IJPC_126_18  
Background: Accurate pain assessment in elderly population is essential for pain management and nurses have a pivotal role. The 11-face Faces Pain Scale (FPS-11) is a well-established pain assessment measure that has not been validated in the Iranian elderly. Aim: The aim was to study the property assessment of the Iranian version of FPS-11 (FPS-11-IR) among elderly outpatients with chronic pain. Methods: This is a cross-sectional validation study that conducted in three outpatient clinics in Tehran, Iran, in 2017. Older people aged ≥60 years (n = 217) with chronic knee pain due to degenerative joint disease were participated. The construct validity was examined by applying contrast constructs, and the face validity was determined by rank-ordering test. To assess concurrent validity, the Spearman's correlation coefficient was calculated between the scores of 11-point Numeric Rating Scale (NRS) and FPS-11-IR. Test–retest reliability was determined in 1-week interval. Results: Most of elderly participants (72%) agreed that pain construct displays in faces of the FPS-11-IR and participants” agreement on face rank ordering were vary for each face, ranging from 80% to 100%. Spearman's correlation coefficient between FPS-11-IR and NRS scores was very strong (r = 0.91, P < 0.01). Intraclass correlation coefficient between test–retest scores was 0.96 that indicates excellent reliability. Conclusions: The FPS-11-IR is a reliable and valid pain assessment scale to use in geriatric patients chronic pain.
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COMMENTARY Top

Commentary p. 51
Arunangshu Ghoshal
DOI:10.4103/IJPC.IJPC_176_18  
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ORIGINAL ARTICLES Top

Role of percutaneous nephrostomy in bladder carcinoma with obstructive uropathy: A story revisited p. 53
Gaurav Garg, Nupur Bansal, Manmeet Singh, Satya Narayan Sankhwar
DOI:10.4103/IJPC.IJPC_102_18  
Objective: To evaluate the role of percutaneous nephrostomy (PCN) in patients of carcinoma bladder presenting with obstructive uropathy. Material and Methods: We evaluated medical records of 33 patients of bladder cancer with obstructive uropathy that presented to a tertiary care hospital in north India from January 2015 to December 2016. Outcome measures included technical success rates, change in blood urea and serum creatinine (measured on Day 1, 7, and 14); and complications of PCN according to Society of Interventional Radiology Guidelines for Percutaneous Nephrostomy. Results: PCN was done in 30 patients. The mean age of patients was 51 years (range 42-67). 24 patients were male and 6 patients were female. The technical success rates for PCN placement were 93.33%. In 12 patients there was no improvement after PCN insertion. Improvement in clinical condition/kidney function occurred in 18 patients. Out of these 6 patients underwent radical cystectomy with ileal conduit formation and palliative radiotherapy/chemotherapy was given to 5 cases. In the remaining 7 patients, after an initial improvement that lasted for 2 weeks after PCN progressive renal dysfunction developed due to malignancy. Minor complications of PCN were seen in 16.6% of patients and major complications were seen in 10 % of cases. Conclusion: In selected patients with bladder carcinoma with obstructive uropathy, PCN insertion may improve kidney function tests to normal levels and enable them to receive tumor-specific curative/palliative treatment.
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Central venous catheter as peritoneal indwelling catheter for the management of recurrent malignant ascites: A case series p. 57
Brajesh Kumar Ratre, Praneeth Suvvari, Wasimul Hoda, Priodarshi Roychoudhury, Sachidanand Jee Bharti, Sushma Bhatnagar
DOI:10.4103/IJPC.IJPC_145_18  
Background: Malignant ascites is an accumulation of fluid in the peritoneal cavity due to the manifestation of terminal metastatic malignancies. Accumulation of ascitic fluid could cause abdominal distention, early satiety, and shortness of breath. The onset and progression of these symptoms are not only distressing but also cause deterioration of the quality of life. Malignant ascites is associated with poor prognosis with anticipated life expectancy ranging from 1 to 4 months. Therapeutic paracentesis is the mainstay of palliation for malignant ascites. It only provides a temporary relief of symptoms, ascites re-accumulates, and paracentesis has to be repeated. Objectives: The aim of this case series was to evaluate our experiences when treating malignant ascites with placement of central venous catheter in the peritoneal cavity, with special emphasis on patient satisfaction, comfort of caregiver, technical success, and adverse events. Methods: Five patients with advanced disease and recurrent malignant ascites who required multiple paracentesis were selected for placement of 7-FG triple-port Central venous catheter in the peritoneal cavity. Maximum fluids that can be tapped were removed in ward. Patients and their relatives were assessed for satisfaction with the procedure. Results: Out of 5 patients, 3 were female and 2 male (age between 46 and 62 years). Two patients had carcinoma gallbladder and one each of carcinoma ovary, breast, and prostate. All patients were followed up till 1 month from catheter placement. Patients and their relatives were well satisfied in terms of frequent hospital visit for paracentesis. Conclusion: In summary, we suggest that central venous catheter may be used as indwelling peritoneal catheter for the symptom management of recurrent malignant ascites. It provides a relatively safe and cost-effective alternative to serial large-volume paracentesis that requires multiple hospital admissions.
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Pain beliefs and perceptions and their relationship with coping strategies, stress, anxiety, and depression in patients with cancer p. 61
Elahe Ramezanzade Tabriz, Reza Mohammadi, Gholam Reza Roshandel, Razieh Talebi
DOI:10.4103/IJPC.IJPC_137_18  
Objective: The current study was conducted aiming at the investigation of pain beliefs and perceptions and their relationship with coping strategies, stress, anxiety, and depression in patients with cancer. Materials and Methods: Study design: This was a descriptive-correlational and cross-sectional study. Data collection tools – Demographic questionnaire, Pain Beliefs and Perceptions Inventory, Pain Coping Strategies Questionnaire (Rosenstiel and Keefe), and Depression, Anxiety, and Stress Scale were used in this study. The dataset was analyzed using descriptive and infreretial statistics that included the chi-square and one-way ANOVA with software SPSS v.16 analysis. Results: Findings of the study indicated that the most common belief about pain in patients is pain permanence. In addition, the most commonly used strategies for coping pain in patients were praying/hoping (25.82 ± 7.86) and self-statements (22.3 ± 10.34). Results indicated that there is a significant difference between pain coping strategies and pain control (P = 0.02). No significant difference was observed between the pain beliefs and the coping strategies (P = 0.15). Depression and anxiety level of patients was estimated as moderate, and their stress was estimated as mild. It was specified that there is a significant difference between self-blame belief and depression of patients (P = 0.01). Conclusion: Understanding and identifying emotional-psychological variables in patients with chronic pains may provide a basis for implementing educational cognitive-behavioral programs for patients and the ground for increasing the ability to control the pain in nonpharmacological methods leading to promoting quality of life in these patients.
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The impact of breast cancer on the patient and the family in Indian perspective p. 66
Annie Alexander, Rohini Kaluve, Jyothi S Prabhu, Aruna Korlimarla, BS Srinath, Suraj Manjunath, Shekar Patil, KS Gopinath, TS Sridhar
DOI:10.4103/IJPC.IJPC_158_18  
Purpose: To understand the role played by the immediate family in treatment decision and support in patients diagnosed with breast cancer, the influence of demographic factors on psychosocial roles of women within the family. Methods: A mixed method design used for data collection on family support, financial arrangement and psychosocial impact of cancer from 378 women with breast cancer recruited at first diagnosis between 2008 and 2012, during multiple counseling sessions. The median follow-up is 7 years with only 2% lost to follow-up. Results: Most patients (99%) had support from family members. 57% of patients met the costs of treatment through personal savings and health insurance. The rest (43%) had difficulty and had to resort to desperate measures such as selling their property or taking on high-interest personal loans. Patients with higher education and urban settings had better financial management. A male member of the family (husband or son) was the main decision maker in half of the cases. Concerns over women's responsibilities within the family varied by the age of the patient. The vast majority of women (90%) experienced social embarrassment in dealing with the disease and its aftermath. Conclusion: In India, it is the family that provides crucial support to a woman with breast cancer during her ordeal with the disease and its treatment. This study has implications on the psychosocial support beyond the cancer patients alone, to include the immediate family and consider aspects of finance and social adjustments as critical in addition to the routine medical aspects of the disease.
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Predictors of quality of life in patients with breast cancer p. 73
Fahimeh Sehhatie Shafaie, Mojgan Mirghafourvand, Jalileh Amirzehni
DOI:10.4103/IJPC.IJPC_119_18  
Introduction: Breast cancer is one of the most common cancers among women and is responsible for physical and sociomental problems. Evaluation of life quality is considered as an important issue in studying chronic diseases, especially cancer. Cancer affects the life quality of the patients in different degrees. Therefore, the effect of disease on life quality of these patients is an important consequence. Therefore, this study was conducted to determine the predictors of quality of life in patients with breasts cancer. Methods: This descriptive-analytical cross-sectional study was conducted in 2017 on 166 female under treatment for breast cancer who referred to Ghazi, Alzahra, Valiasr, and Shams hospitals in Tabriz city, Iran. Samples were selected through convenience method. Sociodemographic and quality of life questionnaires-Cancer 30 in breast cancer patients were completed through interview. Data analysis was performed using Pearson's correlation, independent t, analysis of variance, and linear multivariate regression tests. Results: The mean ± standard deviation of total quality of life score was 59.1 ± 17.4 from the achievable range of 0 to 100. The highest mean score was obtained for cognitive performance subscale (74.9 ± 23.8), and the lowest mean score was achieved for emotional performance subscale (51.4 ± 21.1). According to the results obtained from the linear multivariate regression, variables of time of disease diagnosis, lifestyle, caregiver person, caregiver health status, and matrimonial satisfaction were among the predictors of total quality of life score. Conclusion: The results showed that quality of life in patients under treatment for breast cancer was moderate; therefore, special attention must be paid by caregivers to improve the quality of life in these patients considering its sociodemographic predictors.
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Resilience and its predictors among the parents of children with cancer: A descriptive-correlational study p. 79
Zeinab Habibpour, Hosein Mahmoudi, Masoud Sirati Nir, Hossein Namdar Areshtanab
DOI:10.4103/IJPC.IJPC_128_18  
Context: As a common debilitating illness, cancer is among the leading causes of child mortality in developed and developing countries. Cancer diagnosis for children is considerably stressful for their parents. Resilience is a key factor behind effective coping with cancer-related problems. This study evaluated resilience and its predictors among the parents of children with cancer. Aim: This study evaluated resilience and its predictors among the parents of children with cancer. Settings and Design: This cross-sectional descriptive-analytical study was conducted in 2017 on 400 parents of children with cancer in Tabriz Children's Hospital, Iran. Methods: A demographic questionnaire and the Connor-Davidson Resilience Scale were used to collect the data. Parents were conveniently recruited from Tabriz Children's Hospital. Statistical Analysis: Data were analyzed using the SPSS for Windows program (v. 16) via descriptive and inferential statistical methods. Results: The mean score of parents' resilience was 66.83 ± 14.28. Fathers obtained significantly higher resilience scores than mothers (P < 0.001). The predictors of parents' resilience were financial status, parents' gender, fathers' employment status, and children's gender. Conclusion: The parents of cancer-afflicted children, particularly their mothers, have low resilience and therefore may be at risk for different physical and mental health problems. Health-care providers need to identify at-risk parents and provide them with greater psychological and educational support.
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A qualitative study on palliative needs of stroke patients in an Indian tertiary care setting - Doctors' perspective p. 84
Jacob Lloyd, Ashna Maria Pinto, Shoba Nair, Subhash Tarey
DOI:10.4103/IJPC.IJPC_161_18  
Introduction: Stroke is the development of a focal neurological disturbance lasting >24 h, of vascular origin. In India, stroke is one of the leading causes of morbidity and mortality. Most stroke patients, during their duration of treatment and posthospitalization, want relief of suffering, a sense of control and minimized burden on the family. Aim: The aim of this study is to describe treating doctors' perspectives on the palliative needs of stroke patients in India. Methodology: This qualitative study was conducted at a tertiary care hospital in South India. A total of 17 doctors involved in the care of stroke patients were interviewed, using an interview guide. The interviews were audio recorded simultaneously. The audio recording was transcribed verbatim, and the data were coded using a grounded theory approach. An inductive approach using thematic analysis was used to manually analyze the data. Results: Eight themes emerged. (1) Functional disability: loss of independence due to immobility, speech deficits, visual disturbances, feeding difficulties, and incontinence cause immense distress. (2) Physical burden: pain in the form of central poststroke pain, periarthritic shoulder, psychogenic pain, and various sequela of chronic bed bound state like bed sores and pneumonia add to the burden. (3) Psychological needs: depression is common in stroke patients along with other psychological issues such as anxiety, agitation, apathetic state, and behavioral disturbances (4) Social issues: Cost of treatment of stroke patients coupled with their loss of employment leads to huge economic burden. They also face abandonment by children or spouse, in all sections of socioeconomic strata. (5) Caregiver burden: caregiver has a major role in a setting of stroke and in the long-term affects all domains of their lives, compromising their psychological and physical health. (6) Counseling-an unmet need: counseling is particularly important in a setting of stroke for the patient as well as the caregivers and results in a better patient outcome. However, clinicians expressed that it was inadequate due to the huge patient load, time constraints, and lack of effective counseling skills. (7) Spiritual needs: few clinicians stated that existential distress and spiritual struggle are seen in debilitated stroke victims and are often unaddressed. (8) Issues at the end of life care: patients with massive stroke, multiple comorbidities, and poor rehabilitative potential requires end of life care. Conclusions: From the interviews of the clinicians, we can conclude that care of a stroke patient is more than medical management and rehabilitation, as several other aspects of the patient's life are affected by the condition. The quality of life aspect has to be looked upon as an area that requires active intervention in a setting of stroke. Physical disabilities were viewed as the most significant factor in reducing the quality of life. Spiritual needs have a low priority in comparison to other physical needs. Due to high patient load and time constraints, many of the needs are unaddressed. Two important areas where palliative medicine has a major role in a setting of stroke are counseling and alleviating caregiver burden. However, referral of stroke patients to palliative medicine is low and further research to identify barriers to specialist palliative care of stroke patients will help in promoting the referrals to palliative medicine.
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COMMENTARY Top

Commentary p. 91
Santosh K Chaturvedi
DOI:10.4103/IJPC.IJPC_204_18  
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Ultrasound-guided dry needling as a treatment for postmastectomy pain syndrome – A case series of twenty patients p. 93
Lakshmi Vas, Renuka Pai
DOI:10.4103/IJPC.IJPC_24_18  
Context: Existing interventions for postmastectomy pain syndrome (PMPS) address the neural component while overlooking a possible myofascial component. Aim: The aim of the study is to investigate the myofascial contribution to PMPS, by examining the effectiveness of myofascial trigger point release by ultrasound-guided dry needling (USGDN). Patients and Methods: This retrospective review assessed the efficacy of USGDN in addressing myofascial pain in twenty consecutive patients with treatment-refractory PMPS. Patients in Group 1 (n = 16) received USGDN after neural interventions (NIs) such as neuraxial blocks, intrathecal pump implant, or pulsed radiofrequency, while those in Group 2 (n = 4) received USGDN alone. Outcome measures were changes in Numerical Rating Scale (NRS), PainDETECT (PD), Disabilities of Arm, Shoulder, and Hand (DASH), Patient Health Questionnaire-9 (PHQ-9) scores, and opioid use. Results: In Group 1, the mean (standard deviation) NRS and PD scores (9.6 [0.9] and 28.3 [4.3], respectively, at baseline) reduced to 5.2 (1.1) and 16.1 (3.7) at 1-week post-NI. The post-NI DASH reduction was below the cutoff for clinical relevance (80.9 [10.5] at baseline vs. 71.1 [10.5] post-NI). The opioid dose remained unchanged. Following USGDN, NRS, PD, and DASH scores further reduced to 2.3 (0.8), 6.6 (1.2), and 34.6 (14.4), respectively. Patients receiving USGDN alone also showed reduction in NRS, PD, and DASH (7.8 [1.7], 20.0 [8.0], and 61.0 [14.4] at baseline vs. 1.3 [0.5], 6.0 [1.6], and 22.5 [10.4] post-USGDN, respectively). In all patients, opioid use and PHQ-9 scores reduced only post-USGDN. Conclusions: USGDN reduced pain, disability, and opioid use, whereas NI reduced only pain. This suggests a myofascial contribution to pain and disability in PMPS.
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How patients of oral cancer cope up with impact of the disease? A qualitative study in central India p. 103
Sourav Goswami, Subodh Saran Gupta
DOI:10.4103/IJPC.IJPC_118_18  
Background: Oral cancer is an important cause of mortality and morbidity in India. The disease per se and side effects of different treatment modalities impart a negative physical and psychosocial impact on the patients. This study was designed to have a better understanding of patients concerns. Materials and Methods: This is a qualitative study using in-depth interviews on 24 purposively selected oral cancer patients who have completed their treatment. The study was conducted from January 2016 to September 2017 in both urban and rural community development block in a district in Central India. Participants were selected irrespective of age, sex, occupation, education, stage of disease, and treatments received. The recorded interviews were transcribed for analysis, done using ATLAS ti. The study was conducted after ethical approval. Results: Concerns regarding quality of life, social constraints, financial security, and eating problems were the four major themes, which evolved from the analysis. Emotional and physical distress, disfigurement, dependency, feeling blamed, and avoidance are the evolved subthemes that had a negative psychosocial impact. Spiritualism, acceptance of the disease and increased public attention and support are the factors that increase the confidence among the cancer patients. Conclusion: Quality of life of oral cancer patients should be given prime focus along with continuum of care starting from early means of diagnosis by screening to treatment completion. Nevertheless, it is the family support that seems to play the most vital role in helping cancer patients cope up with the problems.
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Explaining postdischarge care needs of cancer patients: A qualitative study p. 110
Mansooreh Rooeintan, Mojgan Khademi, Tahereh Toulabi, Fatemeh Heshmati Nabavi, Mojtaba Gorji
DOI:10.4103/IJPC.IJPC_164_18  
Aim: This study aimed to explain the postdischarge care needs of cancer patients. Materials and Methods: In this qualitative content analysis, nine cancer patients presenting to the department of chemotherapy or an oncologist's office, four of patients' accompaniments, four nurses, and two oncologists were selected purposefully until data saturation. They underwent deep individual interviews. Data were collected from October 2016 to June 2017. Data were analyzed using Zhang's method with an inductive approach to extract the themes. Results: Data analysis led to the formation of two main categories of healing and relaxation needs (with subcategories of “respect and friendship,” “trust and confidence,” “relief,” “patience and tolerance,” “empowerment,” and “protection from tension and excessive pressure”) and monitoring and balancing conditions (with subcategories of “care monitoring” and “protection”). Conclusions: Postdischarge needs are a set of needs for primary exposure to diagnosis, outpatient attendance at the hospital and treatment centers, access to the treatment team, family readiness, and care systems and community needs for acceptance and care of these patients. The discharge plan should be designed in accordance with the needs set out above, so that the patients can meet the needs of the acute and disease encounter phase and also can manage the emerging postdischarge needs, such as empowerment.
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The meaning of spirituality and spiritual well-being among thai breast cancer patients: A qualitative study p. 119
Tharin Phenwan, Thanarpan Peerawong, Kandawsri Tulathamkij
DOI:10.4103/IJPC.IJPC_101_18  
Context: Spirituality is the essence of a human being. Patients who have good spiritual well-being (SWB) will also have better quality of life. However, health-care providers usually under-assess this aspect due to lack of practical guideline. In Thailand, the validated survey came from a different cultural background and was heavily based on Buddhism approach. Aims: The aim of the study is to assess the meaning of spirituality and SWB in Thai breast cancer patients in Southern Thailand where people have more diverse cultural and religious background. Settings and Design: Descriptive qualitative phenomenology design. Subjects and Methods: In-depth interview with stratified purposive sampling method. The interviews took place in the oncology outpatient unit department and participants' home. Inclusion criteria were being diagnosed with breast cancer, age over 18 years old, able to communicate in Thai, has a Palliative Performance Scale more than 50, and was not diagnosed with any psychological disorder. Statistical Analysis Used: Descriptive statistic. Results: From October 2016 to February 2018, 16 women joined the study. Three themes emerged with five subthemes: (1) feeling life worthwhile, (2) sense of belonging in the community, and (3) feeling connected to the nature. Conclusions: For Thai women, who have breast cancer, their spirituality focuses on family, mainly their children. They also have better SWB if they have good family relationship, social support, or feeling connected with nature or higher being in a religious or nonreligious way. Future survey design needs to be broader in a secular view and on another perspective rather than the religious approach.
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The use of antidiabetic, antihypertensive, and lipid-lowering medications in the elderly dying with advanced cancer p. 124
Mohammad Zafir Al-Shahri, Mahmoud Yassein Sroor, Wael Ali Ghareeb, Enas Noshy Aboulela, Wael Edesa
DOI:10.4103/IJPC.IJPC_96_18  
Background: Maintenance of medications that are unconducive to the quality of life is difficult to justify in dying terminally-ill cancer patients. Objective: We aimed at determining the prevalence of administering antidiabetic, antihypertensive, and lipid-lowering medications to elderly patients dying with cancer. Methods: We reviewed the medical records of patients above 60 years of age with advanced cancer who died in a palliative care unit. The collected data included the use of antidiabetic, antihypertensive, and lipid-lowering medications during the last week of life. Results: Of 103 patients, 51.5% were female and the median age was 69 years. The most common cancers included gastrointestinal (40.8%), gynecological (13.6%), and head and neck (12.6%). All patients had advanced cancer and 59.2% had hypertension, 52.4% had diabetes mellitus, and 19.4% had dyslipidemia. During their last week of life, 38.8% received antidiabetic, 23.3% received antihypertensive, and 3.9% received lipid-lowering agents. The data showed that 68.5% of people with diabetes received antidiabetic medications, 37.7% of hypertensive patients received antihypertensive medications, and 20% of dyslipidemics received lipid-lowering agents. Hypoglycemia was reported in 7.5% of patients receiving antidiabetic drugs, while hypotension was reported in 66.7% of patients receiving antihypertensive agents. Conclusion: Many elderly patients dying with advanced cancer in a palliative care unit were maintained on medications for chronic conditions until the very late stages of their lives. For such imminently dying patients, benefits of such medications are unlikely and burdens are possible. Further research is needed to explore physicians' justifications, if any, for maintaining such patients on apparently futile medications.
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A reflection on the experience with conducting a clinical audit aimed at optimizing pain assessment in cancer patients in Sri Lanka p. 127
Gunasekara Vidana Mestrige Chamath Fernando, Fiona Rawlinson
DOI:10.4103/IJPC.IJPC_110_18  
Context: One of the principle obstacles identified in suboptimal management of pain in worldwide cancer patients is inadequate assessment of pain which in turn leads to poor management. In Sri Lanka, this is heralded by the lack of medical or nursing professionals qualified in Palliative Medicine/Care to date in Sri Lanka. Aim: The aims of this clinical audit were to raise awareness and optimize the assessment of pain among resident patients of a tertiary care cancer hospital by oncology doctors. Methods: A simple “pain and associated symptom chart” was designed for the doctors of the tertiary care cancer institution to document pain experienced by resident cancer patients in terms of intensity, both upon admission and on daily clerking. The expected standards were 100% documentation for each, regardless of the presence of pain on a visual analog scale (0–10). Documentation of the site and character of pain were expected to be 80% each. Results: Despite conducting three audit cycles with staff training and clarifications in between, the pain assessment practices did not be improve significantly (P > 0.05). In the third/ultimate audit cycle, it was noted that 23.5% of the charts were marked as “0” pain intensity upon admission and have been neglected thereafter. Conclusions: Pain assessment practices of the tertiary care oncology unit concerned was suboptimal. Therefore, it is of utmost importance to explore obstacles and incorporate pain assessment as a mandatory routine practice in clinical oncology units.
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National pediatric palliative care needs from hospital deaths p. 135
Farah Khalid, Lee Ai Chong
DOI:10.4103/IJPC.IJPC_111_18  
Objective: The objective of this study was to estimate palliative care needs and to describe the cohort of children with life-limiting illnesses (LLI) dying in hospitals. Design: This study was a retrospective cohort study. The national hospital admissions database was reviewed and children who had died who had life-limiting illnesses were identified. Setting: This study was conducted at Ministry of Health hospitals, Malaysia. Patients: Children aged 18 years and below who had died between January 1, 2012 and December 31, 2014. Main Outcome Measures: Life-limiting diagnoses based on Hain et al.'s directory of LLI or the ACT/RCPCH categories of life-limiting disease trajectories. Results: There were 8907 deaths and 3958 (44.4%) were that of children with LLI. The majority, 2531 (63.9%) of children with LLI were neonates, and the most common diagnosis was extreme prematurity <28 weeks with 676 children (26.7%). For the nonneonatal age group, the median age at admission was 42 months (1–216 months). A majority, 456 (32.0%) had diagnoses from the ICD-10 chapter “Neoplasms” followed by 360 (25.3%) who had a diagnoses from “Congenital malformations, deformations, and chromosomal abnormalities” and 139 (9.7%) with diagnoses from “Disease of the nervous system.” While a majority of the terminal admissions were to the general ward, there were children from the nonneonatal age group, 202 (14.2%) who died in nonpediatric wards. Conclusion: Understanding the characteristics of children with LLI who die in hospitals could contribute toward a more efficient pediatric palliative care (PPC) service development. PPC service should include perinatal and neonatal palliative care. Palliative care education needs to extend to nonpediatric healthcare providers who also have to manage children with LLI.
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Creating a positive attitude toward dying patients among nursing students: Is the current curriculum adequate? p. 142
Sherin Susan Paul, G Renu, PT Thampi
DOI:10.4103/IJPC.IJPC_148_18  
Context: Nurses play an inevitable role in providing compassionate care and support to dying patients and their families. However, it has been a bone of contention that whether the nursing curriculum is sufficiently set to achieve this goal. Aims: The primary objective of this study is to assess the attitude of nursing students attending a private nursing school in Central Travancore region toward the care of dying using the Frommelt Attitude Toward Care of the Dying Scale Form-B (FATCOD-B). Methodology: FATCOD-B was introduced among 146 participants and an arbitrary cutoff of 65% of the total score were chosen with those scoring more than that were assumed to have a positive attitude. A principal component analysis was done to identify the key constructs and mean score of the items within these identified constructs were calculated. Results: The positive attitude toward dying was shown by 39% of participants. Most of the students' responses were averaging toward the option uncertain. A statistically significant increase in mean score by 3.15 (P = 0.02) was noticed among those who completed palliative care postings. The keys constructs identified included perception toward the end-of-life care, emotional engagement with the dying, and perceptions with respect to professional engagement with subgroup analysis showing an average mean score (standard deviation) of 4.36 (0.144), 2.25 (0.874), and 3.39 (0.85), respectively. Conclusion: The revision of the current curriculum incorporating more palliative care postings with specific attention toward handling emotional engagement with the dying may help in developing a positive attitude.
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SYSTEMATIC REVIEW Top

Return to work in cancer patients: A systematic review and meta-analysis p. 147
Hamed Tavan, Arman Azadi, Yousef Veisani
DOI:10.4103/IJPC.IJPC_114_18  
Context: Diseases and accidents bring about the disorder at someone's job insofar as one is not able to return to her/his previous work. These cases are related to the amount of occurred accidents, type of disease, and one's job. Aim: The aim of this study was to evaluate the factors that affect return to work (RTW) in cancer survivors using a systematic review and meta-analysis design.Methods: This is a systematic review and meta-analysis study. We searched the PubMed, Scopus, SID, Google, Elsevier, Google Scholar and Web of Science databases using following keywords: Return to work, cancer patients, employment status, cancer survivors from 2002 to 2017. The rate of return to work in cancer patients based on age group and risk factors was calculated using subgroup analysis. Data were analyzed using STATA software (version 11.1). Results: The total sample size was 4675 people with a mean of 668 in each study. The frequency of studies in the world consists mainly of five studies (71.5%) from Europe continent (the Netherlands and Denmark) and two studies (28.5%) from Asia continent (Iran and Japan). The overall rate of RTW estimated at 72% (68%–77%). The percentage of RTW in Asia and Europe was 57% (50%–65%) and 52% (43%–60%), respectively. Surgery had the highest percentage of treatment options in patients with cancer with 46% (25%–68%), followed by radiotherapy and chemotherapy with 37% (29%–46%) and 36% (23%–49%), respectively. Breast cancer and gastrointestinal cancer were the most and less common type of cancers with 36% (19%–54%) and 16% (7%–26%), respectively. Conclusion: The overall rate of RTW estimated at 57%. Nonetheless, the faster diagnosis and regular screening could improve the survival rate of cancer patients and the increase of RTW.
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PERSPECTIVES Top

Role of early palliative care in advanced head-and-neck cancers patients p. 153
Aanchal Satija, Karl Lorenz, Michelle DeNatale, Odette Spruyt, S V. S. Deo, Sushma Bhatnagar
DOI:10.4103/IJPC.IJPC_142_18  
Head-and-neck cancers (HNCs) are significant in India. Poverty, illiteracy, lack of access to healthcare, and poor treatment infrastructure pose a major challenge in the management of these cancers. The majority of these patients present with advanced stage and are not amenable to curative treatment. The majority have the potential to benefit from palliative care (PC) interventions. Our experience has been that usually the referrals from HNC clinic for PC are at the end-of-life or terminal stage. Unfortunately, in the state of intractable suffering, it is difficult for patients to understand and fully benefit from the role of PC. Developing an effective working relationship and communication between the PC service and referring surgeons or oncologists is a key to foster more timely, appropriate referral, as both patients and clinicians often misunderstand or fail to recognize the role of PC. In preparation for a quality improvement project to improve access to PC for HNC patients at the All India Institute of Medical Sciences, we reviewed the needs, challenges, conceptual models, and potential of early integration of PC in advanced HNC patients.
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CASE REPORT Top

The portrait of a dying child p. 156
RR Pravin, Tan Ee Kar Enrica, Tan Ah Moy
DOI:10.4103/IJPC.IJPC_133_18  
The portrait of a dying child is an homage to a child's journey from initial diagnosis to the terminal stages of illness in metastatic neuroblastoma, raising the critical question of the importance of defining a beautiful death – a concept I first came across as a literature student in Henrik Ibsen's renowned tragedy Hedda Gabler. In this article, we discuss a case study of a child named Peter (real names have been changed to maintain the confidentiality of the patient) and his family, whom I met during my oncology rotation as a junior pediatric resident, and various aspects of care – ranging from symptom management, pain control, the family as an emotional and spiritual unit and complications of metastatic disease. Interlaced amidst references of current practices related to pain control and palliation of symptoms are quotes from Dr Myra BluebondLangner's books and a personal encounter with the child to construct the child as a child and not another dying patient. The enigma of the definition of a beautiful death is also discussed from the patient and the family's point of view. An ideal medical death would be one without pain and with optimal symptom control; however, a beautiful death is so much more – encompassing a peaceful passing surrounded not by machines but by happiness around and at heart. We hope this article would encourage pediatricians to continue to practice pediatric palliative care in the daily setting when dealing with critically ill patients or children in their final stages of life.
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LETTERS TO EDITOR Top

Efficacy of memantine hydrochloride in neuropathic pain p. 161
Abhijit S Nair, Rajendra Kumar Sahoo
DOI:10.4103/IJPC.IJPC_189_18  
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Using CIRUPA to help foster communication with families about brain death in Sub-Saharan Africa p. 162
Sayed K Ali, Anthony Ochola, Fatimah Juma, Feroza Daroowalla
DOI:10.4103/IJPC.IJPC_167_18  
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Cardiovascular safety of naproxen for treating cancer and noncancer chronic pain p. 164
Abhijit S Nair
DOI:10.4103/IJPC.IJPC_143_18  
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Nonpharmacological modality of treating opioid withdrawal p. 165
Abhijit S Nair
DOI:10.4103/IJPC.IJPC_116_18  
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ERRATUM Top

Erratum: What does the informal caregiver of a terminally ill cancer patient need? A study from a cancer centre p. 167

DOI:10.4103/0973-1075.251090  
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