Indian Journal of Palliative Care最新文献

Objectives: Providing excellent care for a dying patient is something all patients deserve. The Institute of Medicine Committee defined good death as one that is in accord with the patient's and family's wishes. End-of-Life (EOL) care preferences of terminally ill patients vary with culture, which is reported by various researchers around the globe. The aim of the study was to explore the EOL care preferences among terminally ill patients from a selected setting in Tamil Nadu, India.

Materials and methods: A descriptive design was adopted. 120 terminally ill patients were interviewed using a structured questionnaire on EOL care preferences in a selected hospice.

Results: EOL is a naive concept in India; interestingly, 16.6% had communicated their EOL wishes to family members. Terminally ill patients valued a sense of dignity more than controlling pain through medications if it muddled them. Nearly 72.5% of patients did not prefer life-prolonging treatment if they did not have a hope of recovery. Nearly 40.83% and 77.5% of patients preferred home for EOL care and death, respectively. Nearly 73.33% of patients preferred that their spiritual beliefs be considered for EOL care. Majority preferred to fill out a living will or an advanced directive. 40.83% agreed that euthanasia to be legally available.

Conclusion: EOL care preferences vary in different cultures and crafting EOL care pathways tailored to cultural preferences will enhance the quality of EOL care. Persistent investment in EOL research promises to pave the way for superior EOL care standards in India.

Among the many barriers to universal access to palliative care is the lack of research. This is most prominent in low-to-middle-income countries such as the Philippines. The objective of this study is to examine the literature undertaken in the Philippines regarding palliative care and identify the characteristics of the studies and gaps in the literature. A scoping review methodology was utilised to identify and examine publications regarding palliative care in the Philippines from January 1994 to November 2024. Data were charted with respect to year of publication, research methodologies used, study population demographics, area of palliative care focused on and author characteristics. This review identified 46 publications in the Philippines regarding palliative care. Approximately 32% of the studies were cross-sectional studies involving questionnaires, while the rest were literature reviews, editorials and retrospective analyses. Half of the identified studies were conducted in collaboration with authors from other countries. The majority of the Filipino authors were affiliated with institutions in the National Capital Region where training programs are held. Most of the studies focused on the domains of pain management and end-of-life care. Eighty-eight percent of the publications were about adult patients. This study identified factors that could empower research development as well as barriers that hinder the growth of palliative care in the Philippines. This highlights the impact of global initiatives on the progress of the country in terms of palliative care. The data show the positive impact of established training programs and the development of standardised tools for assessing quality of life in the production of research and delivery of palliative care services. This study also identified gaps in knowledge, especially regarding the holistic role of palliative care.

Objectives: Cancer can lead to social isolation as patients and families may withdraw from social activities due to physical symptoms or the emotional distress of the disease. The purpose of the study was to assess the social issues and emotional distress amongst palliative care patients with cancer, to identify the correlation between social issues and emotional distress and to find the association between emotional distress and sociodemographic variables amongst palliative care patients with cancer attending the Department of Cancer Palliative Medicine, Tertiary Cancer Centre.

Materials and methods: The study used a descriptive survey design with a consecutive sampling technique. Social issues were assessed using a five-point Likert scale that the researcher developed and validated, and emotional distress was measured using the standardised National Comprehensive Cancer Network Distress thermometer scale. The validity and reliability of the rating scale were assessed, and the content validity index is 0.8, and Cronbach's alpha is >0.07, respectively. Between October and December 2023, data were collected from 68 patients with cancer who satisfied the inclusion criteria after obtaining Institutional Ethical Clearance and informed consent from study participants. The data were analysed using descriptive and inferential statistics.

Results: Majority (54.4%) of them were under the age of 60-75 years, 60.3% were men, and 83.3% belonged to a low socioeconomic position. About 2.9% of them had distant metastases, and about 27.9% of them had a primary tumour site in the pulmonary region. Ninety-one percent of survey participants reported experiencing moderate-to-severe emotional distress due to cancer, and around 50% of them felt that cancer was a manageable social issue. On further subanalysis of moderate-to-severe emotional distress, the majority of them faced moderate emotional distress (69.1%), while 25% faced severe emotional distress. In addition, social difficulties and emotional distress amongst cancer patients were found to be significantly correlated (P < 0.01; r = 0.47).

Conclusion: The study reiterates the fact that social issues have a relationship with emotional distress amongst patients with cancer. Nurses and healthcare workers should take timely efforts to address the underlying issues which result in enhanced patient well-being.

Objectives: The complex and varied needs that people with dementia experience as they approach the advanced stage are context-specific and often unfulfilled. Caregiving is usually family-led and at home, with limited institutional support in low- and middle-income countries like India. The beginning of advanced stages can go under-recognised in the avalanche of overall caregiving demands unique to the prolonged disease trajectory. Limited understanding exists of the unmet needs at this stage. The present study aimed to gain insight into the caregivers' experiences and unmet needs in advanced dementia.

Materials and methods: A qualitative exploratory study with semi-structured interviews was conducted. Eight bereaved primary caregivers of people with dementia who were registered in the Cognitive Disorders Clinic and approached through the recently initiated Neuropalliative care clinic in a tertiary hospital in South India were cared for at their own homes till the end and were interviewed telephonically. A semi-structured interview guide was used, but the interviews were generally participant-led. The interviews with the caregivers were transcribed and analysed manually using reflexive thematic analysis.

Results: Participants acknowledged the need for comprehensive care management with a holistic approach as the disease advances. The overall theme from the caregiver interviews was unpreparedness for advanced dementia care, which encompassed informational, emotional and social support, multifaceted care requirements, assistance with daily activities, support for caregiving, symptoms requiring better management, cultural aspects of care and the need for future care planning.

Conclusion: In the absence of organised advanced care support for dementia, recognising the challenges faced by the informal caregivers and providing targeted support enhances the quality of care and acknowledges the crucial role caregivers play in facilitating a dignified and compassionate end-of-life.

Objectives: A human being is a social animal, and social interactions are pivotal in his life. After traumatic amputation, a normal and able human being becomes disabled for the rest of his entire life. Despite affecting all aspects of life, this unanticipated disability results in undeniable effects on the social relationships and social behaviour of the person. This qualitative study was conducted to explore the aftermath of traumatic amputation on the social lives of lower limb amputees.

Materials and methods: A qualitative approach with a phenomenological research design was employed. The study was conducted at an amputee clinic of a leading tertiary care hospital in North India. A purposive sampling technique was used to recruit the participants who had undergone lower limb amputation due to trauma and were attending an amputee clinic for their follow-ups. We conducted 16 in-depth, face-to-face interviews using a pre-validated interview guide until we reached data saturation.

Results: Data were analysed using the Colaizzi method of thematic analysis, and three main themes emerged: (a) self-isolation (perceived social isolation); (b) support - the core of rehabilitation and (c) spirituality - a major factor in Indian culture.

Conclusion: The findings highlighted that there is a perceived social isolation in amputees instead of actual social isolation by others in society. The study revealed spiritual support as a substantial supportive factor for the holistic rehabilitation of lower limb amputees, specifically in countries with spiritually rich traditions like India. Need-based counselling in the acute stage, family-centred care and support group intervention are the key factors for the comprehensive rehabilitation of lower limb amputees.

Objectives: This study aimed to examine the relationship between spiritual care needs, psychological distress (depression, anxiety and stress) and quality of life in Turkish women diagnosed with gynaecological cancer.

Materials and methods: A descriptive cross-sectional study was conducted with 111 women receiving treatment at a university hospital in Ankara, Turkey, between April and October 2023. Data were collected using the Personal Information Form, spiritual needs assessment scale of patients with cancer (SNASPC), depression anxiety stress scales-21 (DASS-21) and functional assessment of cancer therapy-general (FACT-G). Statistical analyses were performed using IBM Statistical Package for the Social Sciences Statistics version 20.0 (Chicago, IL, USA). Frequencies, percentages, mean values, standard deviations (SDs) and Pearson Correlation Analysis were used to evaluate the data. P < 0.05 was considered statistically significant.

Results: The mean SNASPC score was 233.70 (SD = 30.02). The DASS-21 scores were 8.28 (SD = 5.02) for depression, 8.50 (SD = 5.91) for anxiety and 8.62 (SD = 5.04) for stress. The mean total FACT-G score was 65.67 (SD = 20.18). Significant positive correlations were found between unmet spiritual needs and depression (r = 0.283, P = 0.004), anxiety (r = 0.271, P = 0.006) and stress (r = 0.280, P = 0.005). In addition, spiritual needs were negatively correlated with quality of life (r = -0.584, P = 0.001).

Conclusion: The study revealed that higher unmet spiritual needs are associated with increased psychological distress and decreased quality of life in women with gynaecological cancer. Integrating spiritual care into treatment plans could improve both mental health outcomes and overall quality of life for this population.

Objectives: Clinician-predicted survival for patients with hepatopancreaticobiliary cancers referred for specialist palliative care (SPC) has not been established. This study aimed to estimate and compare the three approaches of clinician predicted survival- temporal, probabilistic and surprise question (SQ) approaches at 7, 30, 60 and 90 days.

Materials and methods: A prospective observational study was conducted following ethical approval, involving 160 adult patients with metastatic cancers of the liver, pancreas, gallbladder and biliary system, who were not receiving any cancer-directed treatment and were referred to SPC from September 2022 to May 2023. Patients were prospectively followed up for 90 days.

Results: A total of 160 patients were recruited, 134 (83.8%) of whom died by the end of the study period. The overall accuracy (OA) for the 7-day temporal, categorical and SQ approaches of Clinician Predicted Survival were 83.5%, 65.4% and 89.5%, respectively, whereas the 90-day OA was 86.5%, 86.3% and 93.4%, respectively. The c-statistic value for 60- and 90-day was 0.62 (95% confidence interval [CI]: 0.52-0.72) and 0.73 (95% CI: 0.60-0.86).

Conclusion: The SQ approach was more accurate than the temporal and probabilistic approaches at all timepoints, in our study of patients with advanced hepatopancreaticobiliary cancers. The temporal approach displayed significantly moderate diagnostic accuracy on days 60 and 90. The least accurate prognostic estimation was recorded on day 30 for all three approaches. We further emphasise employing SQ as the preferred approach for determining the Clinician Predicted Survival.

Objectives: To study the documentation of breathlessness and the Non-Pharmacological Interventions (NPIs) before and after implementation of the Standard Operating Procedure (SOP). The set standard was 100% for both. The secondary aim is to study the symptom cluster.

Materials and methods: Breathlessness is a distressing symptom in patients with cancer. Management principles are based on the empirical Breathing-Thinking-Functioning model with NPI as the first line of treatment. Multidisciplinary Team (MDT) interventions are crucial for lifestyle adjustments to preserve functionality, alleviate anxiety, and train in breathing techniques. The MDT was inducted in the Department of Palliative Medicine in 2022. To assess the impact of MDT on documentation of breathlessness and NPIs, case records of adult patients with cancer, in March 2021 and March 2022 were audited. Statistical analysis was done using Epi Info. Along with documenting the severity of breathlessness, an SOP for NPI in mild, moderate, and severe breathlessness was implemented in December 2022 and the department staff were trained and sensitized. The data was collected for adult patients diagnosed with cancer over two periods; a month after the introduction of SOP for 2 consecutive months (February and March 2023) and after 8 months (September 2023). Data over the cycle was studied and analyzed using Epi Info software (version 7.2.6).

Results: In 2021, (n = 391), 68% had documented breathlessness, with no documentation of NPIs. In 2022, (n = 433), breathlessness documentation increased to 80%, and NPIs to 16%. In February and March 2023, 93.4% of cases had documented breathlessness, with NPIs documented in 91.4%. In September 2023, breathlessness documentation reached 96.7%, with NPIs at 93.5%. Common symptom clusters were fatigue and anxiety.

Conclusion: There was a significant improvement in the documentation of breathlessness and NPIs following MDT induction and SOP implementation. Symptom clusters such as fatigue and anxiety were commonly associated with breathlessness, highlighting the need for integrated multidisciplinary approaches in palliative care settings.

Understanding the definition of a good death in the intensive care unit (ICU) is crucial for the effective implementation of end-of-life care. Existing reviews often focus on terminal patients and overlook the ICU setting. This study aimed to investigate the definitions of a good death in the ICU. The systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines and was registered with PROSPERO. The database searched included PubMed, ScienceDirect and EBSCOhost. Inclusion criteria encompassed English-language quantitative or qualitative studies published from inception until August 30, 2024, that reported definitions of a good death in the ICU and were available in full text. Exclusion criteria included studies that focused exclusively on euthanasia. The risk of bias was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for quantitative or qualitative studies, and a narrative synthesis was performed. Definitions were categorised into themes and subthemes, with the frequency of each theme determined from the perspectives of patients, family members and healthcare professionals (HCPs). Thirty-five high-quality studies were included, with 60% of the articles representing family members perspectives. We identified five themes of a good death: Being free from suffering, withdrawing and withholdinglife-sustaining technologies in ICU settings, privacy, family involvement, and receiving spiritual and cultural support. However, discrepancies among the respondent groups were noted in the core themes: Family members emphasised being free from suffering, while patients reported family involvement more frequently. HCPs highlighted the importance of spiritual and cultural support. This review highlights the definitions of a good death in the ICU. These findings can aid HCPs in gaining a better understanding of a good death in the ICU. Future research should focus on determining the factors influencing a good death.