The evaluation of a palliative care programme for people suffering from life-limiting diseases.

AIMS AND OBJECTIVES: To report on the effectiveness of an eight-week palliative care programme in Hong Kong. BACKGROUND: A recent survey reported that the quality of palliative care services in Hong Kong ranked the 20th among 40 countries and it is far behind other Asian countries. There are disagreement and inadequate communication in clinical decision-making among patients, families and healthcare professionals, and that the nurses lack sufficient knowledge and skills in providing palliative care and advance care planning. DESIGN: A pretest post-test design and semi-structured interviews were adopted. METHODS: A total of 108 home care patients with life-limiting disease and their family caregivers in Hong Kong were recruited to complete a set of questionnaire including The McGill Quality of Life Questionnaire for Hong Kong Chinese and the Family Satisfaction Scale before and after they attended an eight-week programme. The programme comprised the elements of symptom management, intensive communication on advance care planning and psychosocial intervention. RESULTS: Pearson's chi-square tests and Wilcoxon matched paired tests show a general trend that the patients' quality of life was improved after the programme. Their understanding and active participation in advance care planning was also improved. The hospital readmission rate and the days of hospital stays were significantly reduced. In qualitative interview, four major themes were identified that are as follows: improvement in the communication of treatment plans and after-death arrangements, symptom management, emotional support and suggested areas of improvement. CONCLUSION: The study supports the benefit of implementing a palliative care programme to patients with life-limiting disease. Patients demonstrated improved understanding and changed behaviour as regards the preparation for death and dying after the eight-week programme. RELEVANCE TO CLINICAL PRACTICE: The programme could be replicated in other hospitals and infirmaries that offer home care services.

Experiences of Older Adults with Frailty Not Completing an Advance Directive: A Qualitative Study of ACP Conversations.

Advance care planning (ACP) facilitates individuals to proactively make decisions on their end-of-life care when they are mentally competent. It is highly relevant to older adults with frailty because they are more vulnerable to cognitive impairment, disabilities, and death. Despite devoting effort to promoting ACP among them, ACP and advance directive completion rates remain low. This study aims to explore the experiences among frail older adults who did not complete an advance directive after an ACP conversation. We conducted a thematic analysis of audiotaped nurse-facilitated ACP conversations with frail older adults and their family members. We purposively selected ACP conversations from 22 frail older adults in the intervention group from a randomized controlled trial in Hong Kong who had ACP conversation with a nurse, but did not complete an advance directive upon completing the intervention. Three themes were identified: "Refraining from discussing end-of-life care", "Remaining in the here and now", and "Relinquishing responsibility over end-of-life care decision-making". Participation in ACP conversations among frail older adults and their family members might improve if current care plans are integrated so as to increase patients' motivation and support are provided to family members in their role as surrogate decision-makers.

The role of post-loss anxiety in the development of depressive symptoms and complicated grief symptoms: a longitudinal SEM study.

BACKGROUND: Though grief, anxiety, and depression often co-occur, existing evidence mostly focus on any two of them at a time. Our study examined the relationships among the three clusters of symptoms. METHODS: A Chinese community sample of 101 bereaved individuals participated at T1. We utilized Bayesian Structural Equation Modelling (BSEM) to conduct cross-lagged analyses on three-wave panel data (T1 at one-month post-loss, T2 at four-months, and T3 at seven-months). RESULTS: BSEM findings confirmed the presence of distinctive developmental paths for complicated grief (CG), anxiety, and depressive symptoms. Three simplex models showed that anxiety, CG symptoms, and depressive symptoms maintained high consistency. In cross-lagged models, anxiety at T1 was a significant predictor of depressive symptoms (standardized estimate B=0.386*) and CG symptoms (standardized estimate B=0.300*) at T2. The remaining positive directions (0.338*, 0.256*) in the final model suggest the important role of anxiety at early bereavement, while at a later stage, T2 CG contributed to depressive symptoms at T3 (0.356*). LIMITATIONS: In addition to attrition, the overall sample size was limited. Data were based on self-report. Future research with repeated measures and Bayesian informative priors would be more useful to establish relational patterns of symptoms. CONCLUSIONS: In our models, the reduction in anxiety symptoms contributed to the development of depressive and CG symptoms, and these results should be replicated. Theories of mechanisms underlying post-loss anxiety can be explored as a potential means of reducing later symptoms.

Integrative Palliative Care Service Model Improved End-of-Life Care and Overall Survival of Advanced Cancer Patients in Hong Kong: A Review of Ten-Year Territory-Wide Cohort.

Background: Integrated palliative care in oncology service has been widely implemented in Hong Kong since 2006. Aim: The study aimed to review its impact on end-of-life outcomes and overall survival (OS) of cancer patients, as well as its utilization of health care resources in the past 10 years. Design: Cancer deaths of all 43 public hospitals of Hong Kong were screened. Setting/Participants: Randomly selected 2800 cancer deaths formed a representative cohort in all seven service clusters of Hospital Authority at four time points (2006, 2009, 2012, and 2015). Individual patient records were thoroughly reviewed. Propensity score-matched (PSM) analysis was employed to compare the survival of patients. Results: Palliative care provision was associated with improved palliative care outcome, including more prescription of strong opioid, fewer cardiopulmonary resuscitations and intensive care unit admissions, and less futile chemotherapy usage in the end-of-life period (all p < 0.001). In the PSM analysis, the median OS in patients with palliative service (5.10 months, 95% confidence interval [CI] 4.52-5.68 months) was significantly better than those without palliative service (1.96 months, 95% CI 1.66-2.27 months). Patients in the palliative care group had more specialist clinic visits (p < 0.001) and longer hospital stay (p < 0.001) in the last six months of life, although the duration of last admission stay at acute general ward was shortened (p < 0.001). Conclusion: Our results suggested palliative care has played a role in the remarkable improvement in end-of-life outcomes and OS. However, current palliative care model relied heavily on hospital resources. Future work is needed to strengthen community care and to build up quality monitoring systems.

An exploration of anticipatory grief in advanced cancer patients.

BACKGROUND AND OBJECTIVES: Research on anticipatory grief (AG) has been more focused on the experience of relatives than the terminally ill patients. This study will present qualitative 'thick descriptions' of advanced cancer patient's experience of AG and explore how it is experienced in the family context. METHOD: Seven advanced incurable cancer patients (median 58 years) were recruited from the day hospice and five patients comprised the final sample. Participants were invited to attend focus groups and individual interviews to discuss their experience of terminal illness, thoughts and feelings related to AG and how they cope with losses and grief in the family. Qualitative transcripts were analyzed using interpretative phenomenological analysis. RESULT: Two inter-related themes of AG were identified. The first main theme 'subjective experience of AG' comprises confrontations with death and multiple losses; and resistance against death and loss. The second main theme 'experience of AG in the family' explored the patient's role in the family interaction patterns and interpersonal processes. CONCLUSION: An understanding in the subjective experience of AG in terminally ill patients and their experience of AG in the family may contribute to the development of psychotherapeutic interventions. The generative role of the patient in the family grief process is also highlighted.

Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient's Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers.

Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient's quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family and friends) and the mediating role of caregiving self-efficacy on caregiver burden and patient's quality of life. A convenience sample of 225 patient-caregiver dyads recruited between September 2016 and May 2017 from three hospitals in Hong Kong was included in the current analysis. Results showed that the final model provided a satisfactory fit (SRMR = 0.070, R-RMSEA = 0.055 and R-CFI = 0.926) with the data, as good as the hypothesized model did (p = 0.326). Significant associations were detected. Family support had a significant negative indirect effect on caregiver burden and a significant positive indirect effect on patient's quality of life through caregiving self-efficacy, whereas friend support had a significant positive direct effect on caregiver burden but a minimal effect, if any, on patient's quality of life. These findings emphasized (1) the importance of caregiving self-efficacy in improving caregiver burden and patient's quality of life and that (2) sources of social support may be an important dimension moderating the associations of caregiving self-efficacy with caregiver burden and patient's quality of life.

Changes in arterial oxygen saturation (SaO(2)) before, during, and after meals in stroke patients in a rehabilitation setting.

The aim of this study was to investigate the changes in arterial oxygen saturation (SaO(2)) of stroke patients during mealtime and whether duration of feeding (time to finish a meal) and mode of feeding (self-feed versus being fed) were associated with such changes. This study also investigated whether the consequence of aspiration pneumonia in the stroke patients was associated with SaO(2) drops during mealtime. The findings of this study showed that stroke patients but not the controls had a small but significant SaO(2) drop during meals (0.91%, IQR = 1.53%, p < 0.05 in being fed; 1.04%, IQR = 1.35%, p = 0.013, in self-feed). Duration of feeding and mode of feeding, however, did not have an association with mealtime SaO(2) changes. The SaO(2) drop during mealtime was not an early indicator of aspiration pneumonia.

Prevalence, Perception, and Predictors of Advance Directives among Hong Kong Chinese: A Population-based Survey.

Advance directives (AD) can be used for the communication of healthcare decisions that may be required in the future when individuals have lost their capacity to make such decisions. The aim of this study is to examine the prevalence, perception, and predictors of AD completion in the Hong Kong general population with a diverse culture. Through random-digit dialing, a population-based telephone survey was conducted with participants aged 18 or above. Socio-demographic characteristics, self-perception and health status, prevalence of AD, and perceptions related to AD were assessed. The acceptance on completing AD was measured by the summed score on the level of agreement in making AD. In total, 2002 participants completed the survey, with only 0.5% having made AD. However, the majority of those who had heard about AD had made or intended to make AD (80.2%). Multivariable regression analysis showed that being religious, being optimistic, and agreeing to respect patients' wishes are independently associated with higher AD acceptance. Being a student is associated with lower AD acceptance. The extremely low completion rate of AD, but high acceptance of AD urges for more active promotion of AD to the public and education on end-of-life care among university students.

What Patients, Families, Health Professionals and Hospital Volunteers Told Us about Advance Directives.

OBJECTIVE: An advance directive (AD) is a document that allows mentally competent individuals to make healthcare decisions about their condition that they might no longer be able to make in the future. This study aimed to explore the perceptions of AD decision-making of various stakeholders in the Chinese palliative care setting. METHODS: Patients with life-limiting diseases, family members, health professionals, and hospital volunteers were recruited in the palliative care unit of two hospitals in Hong Kong by purposive sampling on age and sex. Qualitative semi-structured individual interviews were conducted. RESULTS: A total of 96 participants, including 24 participants from each group, completed the study. Most participants were willing to discuss AD but had not heard about it before the interview. Patients regarded the decisions made in the AD as a way to reduce their future sufferings, while they also considered the welfare of their family. Family members were concerned about the psychological burden when discussing about the AD. Health professionals emphasized the logistic and process of the AD. Hospital volunteers pointed out the impact of Chinese culture on AD acceptance and the lack of AD promotion in the community. CONCLUSIONS: The findings of the study indicated the need for more promotion of AD in the society. It is important to consider the opinion of a patient's family during AD discussions in a Chinese culture. Health professionals may need to identify the best timing for the discussion of AD with patients and their families.

Prioritizing Chinese Medicine Clinical Research Questions in Cancer Palliative Care: International Delphi Survey.

CONTEXT: Chinese medicine modalities, including acupuncture and Chinese herbal medicine (CHM), have been used as palliative interventions among cancer patients. More research should be conducted to confirm their effectiveness. OBJECTIVES: The objective of this study was to prioritize Chinese medicine clinical research questions for cancer palliative care. METHODS: Twelve international experts, including physicians, Chinese medicine practitioners, nurses, and clinical research methodologists (n = 3 from each category), from Asia, North America, Australia, and Europe participated in a two-round Delphi survey for prioritizing 29 research questions identified from existing systematic reviews. The experts were asked to 1) rate clinical importance of answering the questions on a nine-point Likert scale; 2) provide qualitative comments on their ratings; and 3) suggest outcome measurement approaches. RESULTS: Eight research priorities reached positive consensus after the two-round Delphi survey. Six of the priorities focused on acupuncture and related therapies, of which median ratings on importance ranged from 7.0 to 8.0 (interquartile range: 1.00 to 2.50), and the percentage agreement ranged from 75.0% to 91.7%. The remaining two priorities related to CHM, with median ratings ranged from 7.0 to 8.0 (interquartile range: 1.00 to 1.50) and percentage agreement ranged from 75.0% to 83.3%. Neither positive nor negative consensus was established among the remaining 21 questions. CONCLUSION: The findings will inform rational allocation of scarce research funding for evaluating the effectiveness of Chinese medicine for cancer palliative care, especially on acupuncture and related therapies. Further research on herb safety and herb-drug interaction should be performed before conducting international trials on CHM.

Handicap and its determinants of change in stroke survivors: one-year follow-up study.

BACKGROUND AND PURPOSE: Stroke, a major health issue affecting the elderly, limits their participation in society. The aim of this study was to investigate changes in stroke survivors' handicap levels and to identify their determinants in the subacute phase from 3 months to 1 year. METHODS: Data were collected from a prospective cohort of 303 Chinese stroke survivors with the use of questionnaires, including the Lawton Instrumental Activities of Daily Living-Chinese Version (IADL-CV), Barthel Index, Chinese Mini-Mental State Examination, Chinese Geriatric Depression Scale, and the Chinese version of the London Handicap Scale. RESULTS: A total of 297 and 268 patients were successfully followed up at 6 and 12 months, respectively. Whereas IADL remained unchanged throughout, we found an improvement in Barthel Index but a deterioration in the Chinese Geriatric Depression Scale score at 12 months. Multilevel modeling revealed improvements in the mobility and social integration handicap domains and a deterioration in the orientation domain at 12 months. Overall handicap remained unchanged. At 12 months, depression was most significantly and independently associated with poststroke handicap, and advanced old age alone (>80 years) was associated with clinically significant deterioration in handicap. CONCLUSIONS: Even though IADL remained static at 1 year, mobility and social integration handicap dimensions can be improved in the early community phase after stroke. Nonphysical factors such as depression were confirmed to be significantly associated with handicap. Rehabilitation should target the high-risk group of very elderly stroke survivors who were 4 times more likely to deteriorate in handicap.

Quality of life of palliative care patients in the last two weeks of life.

Quality of life (QOL) is the main consideration in caring for advanced cancer patients, yet little is known about the QOL in the terminal phase. We profiled the QOL of 58 advanced cancer patients during their last 2 weeks of life using the McGill QOL questionnaire-Hong Kong version. The patients provided ratings of QOL an average of 5.6 (median 6) days pre-death. Palliative care services were successful in maintaining the total QOL score during the dying phase. The mean score was 7.0 of 10. Among the various domains, the physical and existential domains scored relatively poorly at 5.9 and 6 of 10, respectively. The worst physical symptom and meaning of life were the individual items with the poorest scores (4.8 and 5.4 of 10, respectively). Compared with admission, there was statistically significant improvement in the worst physical symptom (P = 0.02) and eating item (P = 0.002), but deterioration in physical well-being (P = 0.03), meaning of existence (P = 0.007), and satisfaction with oneself (P = 0.04). In conclusion, QOL evaluation during the terminal phase identifies important aspects requiring improvement during the last two weeks of life. Physical and existential domains of dying cancer patients needed more attention.

The needs, current knowledge, and attitudes of care staff toward the implementation of palliative care in old age homes.

This study aims to explore in depth the needs, current knowledge, and attitudes of all ranks of old age home staff. A large-scale qualitative study with 13 semistructured focus groups was conducted in Hong Kong. Key themes were extracted by framework analysis. Three major themes were extracted, including role as a service provider, current knowledge, and attitude toward palliative care. There was a marked difference in familiarity with the concept of ''palliative care'' between different groups of staff, yet both shared the motivation for enhancement. The biggest concerns for the staff were elderly residents' readiness to accept palliative care, manpower, and resources. Care staff, regardless of rank, seemed to welcome and be ready to adopt a palliative care approach in caring for old age home residents, though not without worries and concerns.