Indian Journal of Palliative Care
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   Table of Contents - Current issue
April-June 2019
Volume 25 | Issue 2
Page Nos. 169-357

Online since Tuesday, April 16, 2019

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Pharmacogenomics in palliative medicine p. 169
Mahadev Rao
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A survey of medical professionals in an apex tertiary care hospital to assess awareness, interest, practices, and knowledge in palliative care: A descriptive cross-sectional study p. 172
Anuradha Patel, SVS Deo, Sushma Bhatnagar
Background: Medical discipline in India focuses on cure rather than comfort care. Palliative care is concerned with improving quality of life and relieving sufferings in patients with advanced incurable terminal diseases. Palliative care in India is still in infancy stage due to lack of knowledge, attitude and skills among health care providers. The reason being lack of training in under graduate as well as postgraduate teaching curriculum and lack of sensitization among policy makers. Aims and Objectives: To assess the awareness, interest, practices and knowledge in palliative care among medical professionals working in a tertiary care hospital. Materials and Methods: All participants were mailed proforma to be filled in a fixed format including details of their qualification, demographic data, their field of work, their training in palliative care and multiple choice questions regarding awareness interest, practices and knowledge of palliative care. Results: Out of 186 respondents, 56% had not received any basic training in palliative care. 81% wanted palliative care education to be included in undergraduate curriculum. Poor program was identified as the most common barrier in learning palliative care. 77% respondents had no idea about home based palliative care services. 50.8% patients dies in hospital in their terminal stage. 88% were interested in learning safe opioid practices. Although 89.8% were aware of the need of palliative care in metastatic cancer but less than 50% were aware of the fact that palliative care is also required in MDR-TB and mental illness. Conclusion: This study reflects data of an apex cancer institute of the country. The result of awareness is not very encouraging despite a dedicated palliative care department. So, we can assume what will be the palliative care status in other parts of India where there is no palliative care at all. Recommendation: We strongly recommends that palliative care teaching should be incorporated in undergraduate curriculum to sensitize the students from the beginning. Budding residents in their learning phase can play an important role by learning and providing palliative care as the first person to come into contact with the patients are residents. There is a strong need of spreading palliative care awareness all over the country.
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A qualitative evaluation of a home-based palliative care program utilizing community health workers in India p. 181
Maryellen Potts, Kathleen B Cartmell, Lynne S Nemeth, Suparna Qanungo
Aim: In India, the need for rural palliative care is increasing with the rising number of people diagnosed with late-stage cancers. Rural areas also have a shortage of trained medical personnel to deliver palliative care. To address these needs, a home-based palliative care program using community health workers (CHWs) to facilitate care delivery was developed to extend the reach of a cancer center's palliative care services outside of Kolkata, India. The research question guiding this qualitative study was, how feasible, useful, and acceptable was this program from the perspectives of the clinical team and CHWs who delivered the intervention? Methods: This qualitative descriptive study used a grounded theory approach and the iterative constant comparative method to collect and analyze data from the key stakeholder interviews. Ten qualitative interviews took place at the Saroj Gupta Cancer Center and Research Institute and were conducted with the CHWs who delivered the home-based palliative care intervention (n = 3) and the clinical team who provided them with training, support, and supervision (n = 7). Results: Three major themes emerged (a) CHWs' desire and need for more training, (b) the need for tailoring of existing intervention protocols and modifying expectations of stakeholders, and (c) the need for considerations for ensuring program sustainability. Conclusions: The study provided evidence that the utilization of CHWs to facilitate delivery of palliative care is a feasible model worthy of consideration and further research testing in low-resource settings.
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The correlation between respecting the dignity of cancer patients and the quality of nurse-patient communication p. 190
Zoleikha Avestan, Vahid Pakpour, Azad Rahmani, Robab Mohammadian, Amin Soheili
Context: Nurse–patient communication is one of the important factors affects the promotion and maintenance of the dignity of cancer patients in the hospital settings. Aims: This study aimed to determine the perceptions of cancer patients regarding respecting their dignity and its correlation with nurse–patient communication in the hospital settings. Subjects and Methods: This correlational study was conducted on 250 cancer patients admitted to the Oncology Departments of Tabriz Shahid Ghazi University Hospital, Iran. These patients were selected using a convenience sampling method. The Patient Dignity Inventory and Nurse Quality of Communication with Patient Questionnaire were used for collecting the data. Statistical Analysis Used: Descriptive and inferential statistics were applied to the data. Results: The score of nurse–patient relationship is significantly correlated with patient's dignity score (R = −0.21, P = 0.001). Conclusions: Due to the importance of nurse–patient communication on maintenance of the dignity of cancer patients, it is a necessary requirement to take proper actions in this area, particularly by promoting “nurse's communication skills.”
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Functional status of older adults with dementia at the end of life: Is there still anything to do? p. 197
Mehmet Ilkin Naharci, Oznur Buyukturan, Umit Cintosun, Huseyin Doruk, Ilker Tasci
Aims: There is a lack of data on physical functional status near death of patients with different types of dementia that can contribute to decisions about what kind of care is needed. The aim of this study was to investigate the course of functional status along with the documented reasons for death in participants with dementia who had regularly been followed at a geriatric outpatient unit. Setting and Design: A retrospective observational cohort study was done using the database of a geriatric outpatient clinic. Subjects and Methods: Sociodemographic and medical records of patients with Alzheimer's disease (AD), vascular dementia, mixed dementia, and dementia with Lewy bodies (DLB)/Parkinson's disease dementia (PDD) who had received routine care in a geriatrics outpatient setting for a minimum of 12 months before death were analyzed. Scores for activities of daily living and documented probable causes of death were recorded. Results: Of the 258 participants, 111 (42 female and 69 male) were included in this study. AD was the leading cause of dementia (51.8%). The median duration of survival with dementia was 4 years. The leading causes of death were cardiovascular disease (CVD) (27.0%) and dementia (27.0%) followed by infections (21.6%) and stroke (10.8%). Disability was the highest in patients with DLB/PDD. Conclusions: This study found relatively shorter survival after the diagnosis of dementia when compared to other populations. CVD still appeared as a major cause of that in this particular disease. Most debilitating type of dementia was DLB/PDD.
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Barriers to effective use of palliative care services in the acute care setting with emphasis on terminal noncancer diseases p. 203
Randol Kennedy, Nabilah Abdullah, Rhajarshi Bhadra, Nana Osei Bonsu, Mojtaba Fayezizadeh, Harold Ickes
Introduction: This study assessed the views of nurses, resident doctors, and attending physicians of the use of a readily available pain and palliative care specialty at their institution while assessing their ability to recognize terminal noncancer illnesses. Methodology: In community hospital consisting of an in-patient pain and palliative specialty, attending physicians, residents, and nurses participate in a survey highlighting the following: parameters for referral/consultation, definition of noncancer-related terminal illnesses, role of pain and palliative care in acute care, consult/referral delay, barriers to effective referral, recognition and withdrawal of futile care, and opioid prescription. Patterns of responses by each professional group were compared and contrasted. Results: The most common accepted reasons for referral were that of hospice care, terminal cancer, and uncontrolled pain, while reasons related to terminal noncancer illnesses were less accepted. A majority of approved physical and social parameters to define terminal noncancer illnesses were not universally accepted among the groups-especially among attendings and residents. While most participants agreed that the best time to refer to palliative care specialty was at the point of diagnosis of a terminal illness, >25% of participants from each group felt that referrals should be done later in the course of the illness. The most highlighted reasons expressed by attendings and residents for the delay in consult were either that of excessive withdrawal of modalities of care or interference with ongoing management that may benefit the patient. Most residents and nurses agreed that attendings' reluctance to consult is a major barrier to its utilization. Conclusion: Barriers to effective utilization are multifactorial, mostly relating to perceptions of the specialty as well as ineffective communication within specialties.
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The effect of positive psychotherapy on the meaning of life in patients with cancer: A randomized clinical trial p. 210
Batool Saeedi, Zohreh Khoshnood, Mahlagha Dehghan, Farokh Abazari, Ali Saeedi
Background and Aim: Cancer, as a social phenomenon, disrupts the daily functions and social activities of a person and changes his ability to perform roles and responsibilities and reach the meaning of life. The purpose of this study was to investigate the effect of positive psychotherapy on understanding the meaning of life in patients with cancer. Materials and Methods: This was a randomized clinical trial study. Sixty-one patients with cancer were selected by convenience sampling method and were assigned randomly into two positive psychotherapeutic (n = 30) and control (n = 31) groups. Positive psychotherapy included eight 90-min sessions held weekly in group form. The life attitude profile-Gary Reker was completed before and after the intervention. Results: The results showed that there was no significant difference between the mean scores of meaning of life and all its dimensions (purposes, existential vacuum, death acceptance, goal seeking, coherence and responsibility choice) before intervention, but there was a significant difference between the two groups after intervention (P < 0.05). Also in the control group, the mean score was reduced after the intervention. Conclusion: The positive psychotherapy is effective in increasing the level of meaningful life, enjoyable and committed life of people with cancer. Therefore, based on the results of this study, health-care managers can plan to train and increase the empowerment of nurses in providing these interventions to patients in need.
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Understanding the organization of hospital-based palliative care in a Nigerian Hospital: An ethnographic study p. 218
David A Agom, Helen Poole, Stuart Allen, Tonia C Onyeka, Jude Ominyi
Context: Organization and delivery of palliative care (PC) services vary from one country to another. In Nigeria, PC has continued to develop, yet the organization and scope of PC is not widely known by most clinicians and the public. Objectives: The aim of the study is to identify PC services available in a Nigerian Hospital and how they are organized. Methods: This ethnographic study, utilized documentary analysis, participant observation, and ethnographic interviews (causal chat during observation and individual interviews) to gather data from members of PC team comprising doctors (n = 10), nurses (n = 4), medical social workers (n = 2), a physiotherapist, and a pharmacist, as well nurses from the oncology department (n = 3). Data were analyzed using Spradley's framework for ethnographic data analysis. Results: PC was found to be largely adult patient-centered. A hospital-based care delivery model, in the forms of family meetings, in- and out-patients' consultation services, and a home-based delivery model which is primarily home visits conducted once in a week, were the two models of care available in the studied hospital. The members of the PC team operated two shift patterns from 7:00 am to 2.00 pm and a late shift from 2:00 pm to 7:00 pm instead of 24 h service provision. Conclusions: Although PC in this hospital has made significant developmental progress, the organization and scope of services are suggestive of the need for more development, especially in manpower and collaborative care. This study provided knowledge that could be used to improve the clinical practice of PC in various cross-cultural Nigerian societies and other African context, as well as revealing areas for PC development.
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End-of-life practices in rural South India: SocioCultural determinants p. 224
Sudha Ramalingam, Subhashini Ganesan
Introduction: End of life care of terminally ill is a sensitive topic in our socio cultural ethos. In a country where Euthanasia policies are widely debated, dignified death is a desired form of death. Euthanasia literally means “good death”. In India the debate still continues on practices related to euthanasia and its legalization until recently when the verdict on the passive euthanasia has been passed by the supreme court. In addition, lack of an effective palliative care system has led to complex situations towards the end of life. Globally, it is estimated that palliative care is needed in 40-60% of all deaths. However there is no training or facility to meet this demand. Methodology: A focus group discussion (FGD) was carried out among 22 residents in a rural area of Tamilnadu to identify the social and cultural determinants of end of life care practices. A FGD guide was prepared and after an informed consent the study was undertaken. An in depth interview was carried out among a sub group of participants. Results: The FGD and the IDI revealed several end of life practices in the rural areas such as Thalaikoothal, Feeding the ill with holy water and sand etc. The study also revealed the major determinants leading to such practices such as the social, and cultural beliefs in addition to economical and emotional factors. Conclusion: Several factors determine the end of life decisions in a family ranging from economical to social and cultural factors. While we are examining these factors, it is important to strengthen the palliative care provision in the country by building capacity and integrating it in primary care.
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Assessment of caregivers' strain during radiation therapy of head-and-neck cancer patients: An institutional report using modified caregivers' strain index scale p. 228
Kazi S Manir, Sourav Ghosh
Aims: Very little works have been reported on the issues of burden perceived by the caregivers of head-and-neck cancer (HNC) patients. Job of the caregiver is complex, and it limits their social, psychological, and economical well-being. Our study aims at assessing caregivers' strain during radiation therapy (RT) of HNC patients using the Modified Caregivers' Strain Index (MCSI) Scale. Materials and Methods: In this single-institutional cross-sectional study, we interviewed caregivers of HNC patients undergoing curative RT. Along with MCSI, a 13-point questionnaire, which was self-administered in local languages; we collected baseline data of patients and their caregivers. Scores were evaluated. For each question, score varies 0–2. Higher the Median Hazard Score (H Score), more was the level of the strain. Results: We interviewed 24 participants. Response rate was 100%. About 45.8% of patients were in Stage III. The median age of caregivers was 40 years; 58.3% were male, 79.2% were employed, and 58.3% were belonging to the upper-lower class. Nearly 66.6% were spouse of the patients and 70.8% belong to joint family. In MCSI score analysis, H Score was 22 (range 14) with a minimum score of 14 and maximum score of 26. The most common score was 20. About 65.1% of participants responded Score 2 in all aspects of strain indices. Travel time had a significant positive association with total H Scores (Pearson's r = 0.663, P < 0.05). Conclusion: Majority of the caregivers was suffering from severe physical, personal, emotional, and social/financial strain. This issue must be addressed in holistic cancer care.
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The analysis of spirituality of patients with HIV/AIDS in taking lessons and self-acceptance p. 232
Neila Sulung, Rahmi Asyura
Context: Nursing care on the spiritual aspect is focusing on the patients' acceptance of their diseases; thus, people living with HIV (PLWH) are able to accept their diseases and are able to take the lesson. PLWH do not only deal with the condition of the disease but also by discriminative social stigma. Aim: The aim of this study was to explore, describe, and interpret the experience of spirituality to self-acceptance in patients with HIV/AIDS. Research Methodology: This research is a qualitative approach by descriptive phenomenology of participants involving as many as 10 people, consisting of 5 men and 5 women. All paticipants are muslim with the education level range from junior high school to university. The ages ranged from 29 to 46 years. Results: This research identifi ed the two themes which are: (1) being able to take the lesson from their diseases, and (2) self acceptance as people living with HIV-AIDS. There were 10 participants participated in this study. A method of in-depth interviews and observation is a help of data collection. Data analysis used was Creswell method. Conclusion: Results of the study suggested the patients to get motivated and to develop aspects of spirituality so that it can help to ease in the process of self acceptance, asgetting closer to God through pray, read the Quran, fasting, etc.
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Exploring the experiences of oncology nurses about the factors facilitating their presence at the bedside of patients with cancer: A qualitative study p. 236
Fereshteh Araghian Mojarad, Akram Sanagoo, Leila Jouybari
Background: The presence of nurses at patients' bedside is regarded as an indication of the quality of care. There is not enough evidence on facilitators of nurses' presence at cancer patients' bedside. Aim: The present study aimed to investigate nurses' experiences of factors facilitating their presence at patients' bedside in oncology ward. Subjects and Methods: In this qualitative study, data were collected using purposeful sampling and semi-structured individual interviews with 25 oncology nurses from two teaching hospitals in Sari, Northern Iran, between 2016 and 2017. Interviews were digitally recorded, handwritten, coded, classified, and analyzed using conventional content analysis approach. Results: Data analysis led to the development of three main categories and seven subcategories. The first category, namely, “leverage spirituality” with two subcategories (motivational beliefs and religious motives). “Being with patient with compassion and commitment” is the second category with two subcategories (sense of altruism and compassionate care and adherence to the profession). The third category is “effective communication” with three subcategories (initial methods being patient, soothing communication, and intimate communication). Conclusion: The results of this study showed that nurses' spiritual beliefs, kindness, and professional commitment and establishing human-friendly relationships with the patient and family would help the nurses of the oncology unit to have a more effective presence in the patients' bed. It seems that further studies are needed to examine the facilitators of the presence of oncology nurses on patients' bedside based on severity of illness.
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A qualitative study to assess collusion and psychological distress in cancer patients p. 242
Roshan Sutar, Prabha S Chandra, Prabha Seshachar, Linge Gowda, Santosh K Chaturvedi
Introduction: Collusion is frequently encountered but least studied entity in palliative care services in India. Impact of collusion is manifold and identifying it requires good communication skills. Once identified, it gives an indication for existing healthy versus developing unhealthy collusion to be dealt within families. Objective: The objective of this study was to identify the prevalence of collusion and its clinical and psychological correlates among patients and caregivers in a palliative cancer care. Materials and Methods: We describe systematic identification and unraveling of collusion across multiple levels in a palliative cancer care eventually drafting an algorithm to unravel the collusion. Patients and families were recruited from in-patient palliative care services after obtaining written informed consent. Qualitative interviews were conducted using collusion questionnaire, EQ5D, Visual Analog Scale, and NIMHANS psychiatric morbidity screen. Results: Among 62 cancer families interviewed, we identified that 71% collusion exists between doctor and patient, 61.3% between doctor and caregiver, and 75.83% between patient and caregiver. Around 50% collusions were unraveled systematically. Collusion was more prevalent in patients with rapid progression of illness (<6 months), patients with poor coping skills, and preference of being interviewed alone. Conclusion: This statistics suggests that collusion goes unnoticed in terminal illnesses and communication skills play a major role in identifying and dealing with collusion. This also unearths need to formulate interview techniques and structured assessment tools or questionnaire in palliative cancer care which are sparse.
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Effect of palliative bronchoscopic interventions on symptom burden in patients with central airway narrowing: A retrospective review p. 250
Anuja Pandit, Nishkarsh Gupta, Vinod Kumar, Sachidanand Jee Bharati, Rakesh Garg, Karan Madan, Seema Mishra, Sushma Bhatnagar
Introduction: Early integration of palliative interventions in patients with central airway obstruction (CAO) has shown to reduce patients' distress due to breathlessness and achieve better outcomes at lower cost. This retrospective review was performed to determine whether rigid bronchoscopic interventions alleviated the symptom burden and the requirement for continued mechanical ventilation in patients with CAO in a tertiary care hospital. Materials and Methods: Detailed records of 105 patients with CAO were retrospectively studied. The Numerical Rating Scale (NRS) score for cough and dyspnea before and after the intervention was noted. A need for an escalation or reduction in level of care was also noted. Results: The mean NRS score for dyspnea (n = 84) reduced from 7.5 (4–9) (before procedure) to 2.5 (2–6) after intervention (P < 0.01). The mean NRS score for cough (n = 68) also reduced from 6.5 (4–8) (before procedure) to 4 (3–7) after intervention (P < 0.01). Of these patients, bronchoscopic intervention allowed transfer out of the ICU in 14 patients (42%) and immediate withdrawal of mechanical ventilation in 8 patients (42%). Conclusion: There is an instantaneous valuable palliation of symptoms and improved health-care utilization with airway tumor debulking and stenting. Multidisciplinary interventions with emphasis delivery of palliative care provide better care of patients with CAO.
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Conference Editorial p. 254
Chitra Venkateswaran
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IAPCONKochi 2019 Proceedings p. 255
Sunitha Daniel, Chitra Venkateswaran
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IAPCONKochi 2019 Abstracts Highly accessed article p. 260

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