Background: Older people in Thailand receive general medical and social care at the end of life, and many rarely access palliative services. In light of this, improving the quality of care for the ageing population relies on addressing the needs of family caregivers, who provide the majority of care in a home setting. Understanding caregivers' perspectives when caring for a friend or relative will help to improve the quality of care that they provide.
Aim: To explore caregivers' perspectives on improving care for older people in Thailand in the palliative stage.
Methods: A qualitative study using in-depth interviews and observation of 10 older people in the palliative stage and their caregivers was undertaken. Data were analysed using content analysis.
Findings: Data analysis revealed three themes: caregivers cared to repay the older person's previous kindness, caregivers cared and changed their caregiving behaviour to minimise the older person's perception of being abandoned or being a burden, and to follow Thai ancestral traditions, so that the older person could die peacefully.
Conclusion: This study provides specific instructions for those who provide care for older Thai people in the palliative stage. Finding ways to address caregivers' perspectives on improving care quality could enhance the experience of care recipients.
BACKGROUND: Delirium, a neuropsychiatric syndrome that occurs throughout medical illness trajectories, is frequently misdiagnosed. The Memorial Delirium Assessment Scale (MDAS) is a commonly used tool in palliative care (PC) settings. Our objective was to establish and validate the Memorial Delirium Assessment Scale-Thai version (MDAS-T) in PC patients.
MATERIALS AND METHODS: The MDAS was translated into Thai. Content validity, inter-rater reliability, and internal consistency were explored. The construct validity of the MDAS-T was analyzed using exploratory factor analysis. Instrument testing of the MDAS-T, the Thai version of the Confusion Assessment Method for the Intensive Care Unit (CAM-ICU-T), and the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition as the gold standard was performed. The receiver operating characteristic (ROC) curve was used to determine the optimal cutoff score. The duration of each assessment was recorded.
RESULTS: The study enrolled 194 patients. The content validity index was 0.97. The intraclass correlation coefficient and Cronbach’s a coefficient were 0.98 and 0.96, respectively. A principal component analysis indicated a homogeneous, one-factor structure. The area under the ROC curve was 0.96 (95% confidence interval [CI], 0.93–0.99). The best combination of sensitivity and specificity (95% CI) of the MDAS-Twere 0.92 (0.85–0.96) and 0.90 (0.82–0.94), respectively,with a cutoff score of 9, whereas the CAM-ICU-T yielded 0.58(0.48–0.67) and 0.98 (0.93–0.99), respectively. The median MDAS-T assessment time was 5 minutes.
CONCLUSION: This study established and validated the MDAS-T as a good and feasible tool for delirium screening and severity rating in PC settings.
IMPLICATIONS FOR PRACTICE: Delirium is prevalent in palliative care (PC) settings and causes distress to patients and families, thereby making delirium screening necessary. This study found that the MDAS-T is a highly objective and feasible test for delirium screening and severity monitoring in PC settings and can greatly improve the quality of care for this population.
Palliative care is a crucial component in improving peoples' end-of-life period. It is important to understand the wishes of people at the end of life and the perceptions of their healthcare providers regarding these wishes. As nurses play a key role in patient care, in this study we set out to determine nurses' perceptions regarding what constitutes a "good death", comparing what they thought their older patients would prefer to their own preferences for their own end-of-life care. Questionnaires asking about various options of end-of-life care were distributed to nurses, and they were asked how they thought older people would respond to each of the questions and what their own preferences would be if they were terminally ill. In total, 656 participants were enrolled and they rated relief from suffering as the most important component, both for themselves and for those in their care. More than 80% of nurses agreed with all of the statements on the questionnaire. However, some of the nurses' preferences for their own end of life differed from those they expected their patients to value.
BACKGROUND: Goal of palliative care is to experience a good death. Understanding the perceptions of elderly patients and their relatives about this issue should provide healthcare professionals with practical guidance in order to achieve this goal.
OBJECTIVES: To determine and compare the perceptions of elderly patients and relatives regarding wishes during their end-of-life (EOL) period.
METHODS: This was a cross-sectional study conducted at Siriraj and Srinagarind Hospital in Thailand from September 2017 to February 2018. A questionnaire was given to elderly patients and the relatives of them. The patients were asked to respond to the questions as though they were terminally-ill patients, and relatives were asked to imagine how elderly people would respond to the questions.
RESULTS: We recruited 608 elderly patients and 607 relatives. The most important issue in both groups was"receiving the full truth about their illnesses". The perceptions of the patients and relatives differed significantly in 8/13 areas covered in the questionnaire. Independent factors associated with preference for home death were elderly from Khon Kaen (adjusted odds ratio (AOR) 2.6;95%CI 1.7,4.1), previous self-employed/general work compared to individuals who did not work (AOR 0.5;95%CI 0.3,0.9), low educational level (AOR 2.3;95%CI 1.3,4.0), low income (AOR 1.7;95%CI 1.1,2.5), greater family size (AOR 1.7;95%CI 1.1,2.6) and dissatisfaction in life (AOR 2.5;95%CI 1.1,5.4).
CONCLUSION: Receiving the full truth about their illnesses was the most important issue for participants in both groups. The major differences between the two groups had to do with autonomy. Factors influencing place of death were location of patients, previous occupation, educational level, family income, family size and dissatisfaction in life.
BACKGROUND: Spinocerebellar ataxia type 1 (SCA1) is an autosomal dominant progressive neurodegenerative disease. Few studies have been conducted regarding advance care planning in this population.
OBJECTIVE: This study explores advance care planning preferences of patients with SCA1 and their association with disease progression and quality of life.
METHODS: The study examined 12 Thai patients with SCA1 from 2 families living in Thailand. The advance care plan followed a Gold Standards Framework. The 12 patients were interviewed and recorded in video. The research team evaluated neurocognitive functions as measured by the following tests; Scale for the Assessment and Rating of Ataxia (SARA), Berg Balance Score, Mini-Mental Status Examination, and Digit Span and Category Fluency. The quality of life was measured by a Short-Form Health Survey-36 (SF-36).
RESULTS: Seven of 12 patients with SCA1 rated communication ability as most important for their quality of life. Patients identified becoming a burden on their family members and ventilator dependence as the most undesirable situations. Half of the patients preferred a hospital as their last place of care. Comparing patients prefer hospital to home has significantly high median SARA (23 vs 11.5; P = .03) and low SF-36 (41.4 vs 72.4; P = .02).
CONCLUSIONS: Those patients preferring a hospital for end-of-life care exhibited more physical disability and lower quality of life than those who preferred home care. Making assisted living health-care services in the home more readily available and affordable may alleviate concerns of patients facing more severe physical challenges.
OBJECTIVES: Studies have shown improved patient quality of life with supportive care rather than aggressive treatment at the end of life. This study evaluated the symptoms that patients in Thailand with gynecologic cancers experienced and the interventions that they received at the end of life.
METHODS: The medical records of patients admitted to a tertiary cancer center in Thailand who died in the hospital from gynecologic malignancies between January 1, 2011 and December 31, 2016 were reviewed. Inclusion criteria were patients who had been been diagnosed with gynecologic cancers (ovarian, endometrial, cervical, vulvar, or peritoneal cancers or uterine sarcomas) and had died in the hospital during that period. Patients whose medical records were incomplete or unavailable were excluded from the study. Data on demographics, symptoms, interventions, and end-of-life care were collected.
RESULTS: A total of 159 patients were included in this analysis. The mean age at death was 54.3 (range 15-91) years. Over half (54.7%) of the patients were diagnosed with ovarian or peritoneal cancer, 26.4% with uterine cancer or sarcoma, 16.4% with cervical cancer, and 1.3% with dual primary cancers. Symptoms at time of admission were poor oral intake (68.6%), abdominal distention or discomfort (63.5%), pain (42.8%), nausea or vomiting (35.2%), and fever or signs of infection (27.0%). The mean number of hospitalizations during the last 6 months was 3.6. Thirty-six patients (22.6%) had major surgery during the last 6 months of life, with 14 patients (8.8%) having it performed during their last admission before death. The mean length of the last hospital stay was 22.3 (range 6-31) days, and 61 patients (38.4%) were admitted to the intensive care unit. Eleven patients (6.9%) had chemotherapy in their last 14 days of life and 10 (6.3%) received cardiopulmonary resuscitation. Almost all patients (153, 96.2%) had do-not-resuscitate (DNR) consents. The mean time between the DNR consent and death was 6.3±9.7 days.
CONCLUSION: Multiple hospital admissions, aggressive treatments, and invasive procedures were common among patients with gynecologic cancer at the end of life. Better symptom management, end-of-life preparation, and communication are needed to enhance patients' quality of life in Thailand.
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.
BACKGROUND: There is limited understanding of the symptoms that older people living with cancer, chronic obstructive pulmonary disease and chronic kidney disease experience during the last year of life in Thailand, in addition to their health service preferences.
AIMS: To survey the symptom experiences and health service preferences at the end of life of older people with chronic illnesses from the perspective of bereaved carers.
METHODS: The study used a retrospective post-bereavement approach to collect quantitative data. Purposive sampling was used to select 76 bereaved relatives of older people living with chronic illnesses who had died in the previous 5 to10 months. Telephone interviews and a translated version of the Views of Informal Carers-Evaluation Services (VOICES) questionnaire were conducted. Data were analysed using the statistical package SPSS version 17.
FINDINGS: The overall quality of care received by older people living with chronic diseases during the last three months of life was described as 'good' (36%). However, in comparing the quality of care from different settings, most of the subjects (63%) thought that the quality of care at home should be rated as 'poor'. During the last twelve months, 35% of the respondents rated pain and poor appetite as the main symptoms, while 25% described experiencing 'worry' related to being at the end of life. The severity of many symptoms increased during the last three months of life; 21% of carers recommended that pain caused the most suffering to their relatives at 'all times', when compared with other symptoms of end of life. Around 21-35% reported that their relatives 'sometimes' experienced worry, low mood, breathlessness and oedema. During the last three days of life, it was reported by 97% of respondents that their relatives spent all of their time in hospital, and no respondents reported that their relatives had died at home.
CONCLUSION: The study indicates that older people living with chronic diseases in Thailand are less likely to access specialist palliative care and are more likely to have poor symptom control at the end of life. It indicates that health services may not be meeting patients' needs and that there was clearly insufficient healthcare provision at home for older people to help them to manage their symptoms such as pain and breathlessness.
BACKGROUND: Few studies exist regarding the perception of medical students toward older adults' wishes during their end-of-life period. Better understanding of students' perceptions regarding this topic could help improve palliative education. The purposes of this study were to examine the perceptions of medical students regarding what constitutes a "good death" and to demonstrate the factors associated with the necessary care decisions in older patients.
METHODS: This is a cross-sectional study. A questionnaire was developed and given to all of the medical students at two medical schools in Thailand (Siriraj and Srinagarind Hospital) from September 2017 to February 2018. They were asked to response to the questions by imagining how older people would think, and their preferences regarding care at the end-of-life period. The anonymous questionnaires were collected and analyzed.
RESULTS: A total of 1029 out of 2990 surveys were returned (34.4%). A minority of the sixth-year medical students rated themselves as being knowledgeable about palliative care (11.3%). According to the survey, desire to have spiritual needs met and have their loved ones present were the most important conditions that contributed to a "good death". Factors associated with reluctance to receive prolonged treatment were female sex (adjusted odds ratio (AOR 1.39), being in the clinical years of training (AOR 1.92), self-rated good health (AOR 1.45), and prior experience of watching someone dying (AOR 1.61). Enrollment in Srinagarind medical school (AOR 2.05), being a clinical student (AOR1.91), and being dissatisfied with life (AOR 1.78) were independent factors related to preference for home death.
CONCLUSIONS: Most medical students signified understanding of concepts of geriatric palliative care but felt that they had insufficient knowledge in this area. Multiple factors related to decision regarding the care that was required were identified. Medical schools should consider this information to improve geriatric palliative medical education in undergraduate training.
BACKGROUND: Achieving a "good death" is a major goal of palliative care. Nurses play a key role in the end-of-life care of older patients. Understanding the perceptions of both older patients and nurses in this area could help improve care during this period.
OBJECTIVES: To examine and compare the preferences and perceptions of older patients and nurses with regard to what they feel constitutes a "good death."
RESEARCH DESIGN:: A cross-sectional study.
PARTICIPANTS AND RESEARCH CONTEXT: This study employed a self-report questionnaire that asked about various options for end-of-life care. It was distributed to older patients who attended the outpatient clinic of internal medicine and nurses who worked at two medical schools in Thailand from September 2017 to February 2018. Patients were asked to respond to the questions as if they were terminally ill, and nurses were asked to imagine how older patients would answer the questions.
ETHICAL CONSIDERATION: Approval from Institutional Review Board was obtained.
FINDINGS: A total of 608 patients and 665 nurses responded to the survey. Nurses agreed with concepts of palliative care, but they rated themselves as having poor knowledge. The patient respondents felt that it was most important that they receive the full truth about their illnesses (29.2%). The nurses thought the most important issue was relief of uncomfortable symptoms (25.2%). On seven out of the 13 questions, nurses overestimated the importance of the relevant issue to patients and underestimated the importance on one question (p < 0.05).
DISCUSSION: Both nurses and older patients signified concepts of palliative care, but nurses felt that they lacked adequate knowledge. Nurses estimated that patients would have positive attitudes toward autonomy and the closure of life affairs to a significantly greater degree than the patient respondents.
CONCLUSIONS: We recommend that palliative care education be improved and that steps be taken to allow for more effective nurse-patient communication with regard to the patients' end-of-life wishes.
BACKGROUND: Family caregivers have a significant role in Thai healthcare, taking on responsibilities of health professionals. The purpose of this research was to explore Thai family caregivers' experiences of providing palliative cancer care.
METHODS: This qualitative study took a phenomenological approach. In-depth interviews were conducted with 14 family caregivers aged 33-72 years in a regional hospital in the north of Thailand. The data was analysed using Colaizzi's phenomenological approach. Rigour was established by following Lincoln and Guba's guidelines for qualitative research.
FINDINGS: The experiences of Thai family caregivers providing palliative cancer care could be categorised into four themes: caring as a team; caring as supportive care; taking care to keep patients happy; and caring for the self while looking after a relative.
CONCLUSION: Health professionals can support family caregivers to deliver the best care for cancer patients and to help them decrease their stress. This study discusses ways how this may be done.
Context: Palliative care (PC) refers to a set of basic health services in Thailand and is in the early stage of implementation.
Aim: The aim of this study is to develop a community-based PC model in a district health system (DHS) based on the form of action and evaluation.
Methods: A three-step action research: look, think, and act was designed with mixed methods of data collection.
Results: A key finding was the confusion on the terminology of the PC, challenge of the referral system of PC patients in DHS, medical equipment and supplies for the PC patients, and insufficient access to opioid analgesics at home. The model of development comprised the training of health professionals, the management of the medical equipment and supplies by people sector, and the development of a referral guideline of the PC patient in DHS. The evaluation showed the higher score of the accessibility to PC than the score of accommodation for patients. It also showed the higher score of the care continuity over the longitudinal continuity for patients. For the carers, the score of guilt is higher than the score of the care burden.
Conclusions: A community-based PC model should be monitored by district health managment. The methods of this study are expected to be useful advice on how to solve similar problems in the other regions of similar context.
This article provides a conceptual framework for understanding the relationship between palliative care and healthy aging using a narrative case study from Thailand. The Thai context is used to clarify two concepts: healthy aging and good death. This case study describes a Thai female older adult's perspective and her drive to stay physically, cognitively, and socially active for as long as possible—strong indicators of healthy aging until the end of life. Family support is a vital part of helping older adults stay active and achieve a good death. The Thai healthy aging model explains a lifelong process of how to be a healthy ager in the Thai context. The model is closely related to a palliative care philosophy, which focuses on dying without unnecessary suffering and promotes closeness to family. This model supports the inclusion of palliative care in healthy aging strategies to maximize quality of life and well-being, particularly in older adults experiencing multimorbidity and health inequalities. Improved healthy aging is integrally related to the provision of high-quality palliative care. The earlier systems and providers can promote healthy aging across contexts, the more effectively interventions can be targeted to encourage and improve the experience of care at the end of life.
BACKGROUND: Palliative care is now part of Universal Health Coverage goals. Measurement of person-centred outcomes is central to determining quality and effectiveness. Guidance in psychometrics requires tools applied in new settings to have their properties tested.
AIMS: To translate staff and patient versions of the Palliative care Outcome Scale (POS version 2) into Thai, and to determine its psychometric properties among cancer patients in a Thai public hospital.
DESIGN: The Thai POS was subjected to cross-cultural translation: forward translation, backward translation, review by experts, and content validity index measurement. The patient-rated version was completed by N=379, and staff-rated version by N=379 nurses. We tested internal consistency, known-group comparison, responsiveness, and agreement.
SETTING: /participants: n=379 Thai cancer patients admitted to Maharaj Nakorn Chiang Mai Hospital.
RESULTS: We found good internal consistency (Cronbach's alpha=0.9), good discrimination between known groups (significant difference in scores between high and low performance status groups, Z ranged from -9.95 to -7.80, p<0.001), good responsiveness (improvements in at time 2, Z ranged from -14.01 to -6.31, p<0.001), and acceptable to good patient-staff agreement on ratings (weighted kappa range 0.31 to 0.73).
CONCLUSION: The Thai POS is valid and reliable. These findings enable researchers and clinicians to apply the POS in primary research and routine clinical practice, to both determine the effectiveness of interventions and improve care. This is the first validation in the region of a multidimensional person-centred outcome measure designed specifically for patients and families with advanced disease.
AIM: To describe Thai nursing students' experiences of providing end-of-life care (EoLC).
METHODS: Data were collected via in-depth interviews with 21 nursing students and were analysed using Van Manen's method.
FINDINGS: Eight themes emerged based on Van Manen's four lived worlds: feeling excited and worried when receiving an assigned case; feeling disappointed with the health-care team's provision of psychosocial support for patients at the end-of-life and their families; being in a time of uncertainty; recognising that EoLC is a time for gaining merit; knowing that a peaceful place and privacy are needed for promoting a peaceful death; knowing that the real-life classroom is around the patient's bedside; feeling lonely and needing help and support; and creating relationships with patients and families as a nurse.
CONCLUSIONS: To promote nursing students' positive clinical experiences in providing EoLC, enhancing staff's competency and closing the theory-practice gap regarding palliative care are necessary objectives.
OBJECTIVES: Patients with advanced disease sometimes express a wish to hasten death (WTHD). In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon. Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide. The aim of the present study was to update our previous review by including new research and to conduct a new analysis of available data on this topic.
SETTING: Eligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA.
PARTICIPANTS: Studies of patients with life-threatening conditions that had expressed the WTHD.
DESIGN: The search strategy combined subject terms with free-text searching of PubMed MEDLINE, Web of Science, CINAHL and PsycInfo. The qualitative synthesis followed the methodology described by Noblit and Hare, using the 'adding to and revising the original' model for updating a meta-ethnography, proposed by France et al. Quality assessment was done using the Critical Appraisal Skills Programme checklist.
RESULTS: 14 studies involving 255 participants with life-threatening illnesses were identified. Five themes emerged from the analysis: suffering (overarching theme), reasons for and meanings and functions of the WTHD and the experience of a timeline towards dying and death. In the context of advanced disease, the WTHD emerges as a reaction to physical, psychological, social and existential suffering, all of which impacts on the patient's sense of self, of dignity and meaning in life.
CONCLUSIONS: The WTHD can hold different meanings for each individual-serving functions other than to communicate a genuine wish to die. Understanding the reasons for, and meanings and functions of, the WTHD is crucial for drawing up and implementing care plans to meet the needs of individual patients.
Introduction: Code Z515, which indicates palliative care, is a part of the International Classification of Diseases and Related Health Problems (ICD). At present, this diagnostic code is still rarely used although the number of patients requiring palliative care is increasing. So many patients forfeit their right to access the best palliative care and all that it entails. Objectives: To determine the prevalence of the code Z515 diagnostis according to ICD-10 in patients diagnosed with cancer as well as the relationship between treatment and costs in Songklanagarind Hospital. Methods: A retrospective descriptive study on patients diagnosed with code Z515 in Songklanagarind Hospital between 2012 and 2016 was conducted. We collected data from our hospital information system (HIS) and divided into 2 groups, In and outpatients department. Then we recorded data using extraction forms. We analyzed the data using percentages, 95% CI and odds ratios.
Results: Prevalence of diagnosis with code Z515 in cancer patients was 1.7 × 10-3 for both in- and outpatients. For outpatients, patients who received radiation and combined treatment were 9.4 and 26.5 times, respectively, to incur medical costs in the range of 4,001 to 6,000 THB (118-177 USD) compared with patients who received supportive treatment or had no cost. The results shows no relationship between the number of medications taken and cost among inpatients, there was no observable difference in statistical significance The same was true for the relationship between treatment and costs as well.
Conclusion: Study found a very low prevalence of coding Z515 use. Although we know that all cancer patients should receive the best palliative care, the greater their benefit from this type of treatment, the Z515 diagnosis remains less pervasive than it should be.
Cette étude suggère que la spiritualité est associée à la qualité de vie ; ce qui est conforme avec une étude semblable menée dans d'autres pays. Fournir des soins spirituels aux personnes âgées souffrant de maladie chronique est important et l'étude des besoins spirituels des personnes âgées devraient être poursuivie dans une future étude.
Cet article décrit les résultats d'une étude pilote menée pour évaluer les besoins en vue du développement d'un modèle de soins palliatifs à domicile pour les patients souffrant d'une insuffisance rénale en phase terminale.