While the strict regulations in hospital in Hong Kong effectively controlled the
outbreaks of COVID-19, they caused challenges in the care of our hospitalized cancer patients. Four clinical cases based on true encounter during the COVID-19 period with mitigations were summarised. These four cases reflected the unanticipated impacts of the extreme measures and
highlighted the deficiencies of our existing system. The pandemics offered us opportunities to explore new ways to improve our cancer care, especially concerning the psychological support to both patients and caretakers.
Background: Advance care planning (ACP) facilitates identification and documentation of patients’ treatment preferences. Its goal aligns with that of palliative care – optimizing quality of life of seriously ill patients. However, concepts of ACP and palliative care remain poorly recognized in Chinese population. This study aims at exploring barriers to ACP from perspective of seriously ill patients and their family caregivers.
Methods: This is a qualitative study conducted in a Palliative Day Care Centre of Hong Kong between October 2016 and July 2017. We carried out focus groups and individual interviews for the seriously ill patients and their family caregivers. A semi-structured interview guide was used to explore participants’ experiences and attitudes about ACP. Qualitative content analysis was adopted to analyze both manifest content and latent content.
Results: A total of 17 patients and 13 family caregivers participated in our study. The qualitative analysis identified four barriers to ACP: 1) limited patients’ participation in autonomous decision making, 2) cognitive and emotional barriers to discussion, 3) lack of readiness and awareness of early discussion, and 4) unprepared healthcare professionals and healthcare system.
Conclusions: Participations of seriously ill patients, family caregivers and healthcare workers in ACP initiation are lacking respectively. A series of interventions are necessary to resolve the barriers.
BACKGROUND: Achieving the preference of place of care and place of death of patients is a quality marker in palliative care. From a recent study, around 30% of the Hong Kong general population wished to die at home. In our study, residential care home for the elderly (RCHE) was also considered as home. The objective of this study was to investigate the preference of place of care and place of death of terminal cancer patients who received palliative care service in Hong Kong. We would also investigate the facilitating and obstructing factors for home death. Common factors associating with the preference of home death would also be examined.
METHODS: A hospital-based cross-sectional questionnaire survey was conducted in a local palliative care unit from 3 December 2018 to 10 January 2019. Univariate analysis was performed to evaluate factors associated with the preference of home death.
RESULTS: Total 72 patients were recruited. Overall, 22 (30.6%) patients wished to die at home ideally. After concerning reality and different choices, only 13 (18.1%) patients preferred home death. The most common chosen facilitating factor for home death was to provide support to carers (12 patients, 92.3%). Five patients (38.5%) chose it as the most significant facilitating factor for home death. It was inconclusive for the most common chosen and most significant obstructing factor for home death. There were no statistically significant factors found to be associated with the preference of home death.
CONCLUSIONS: The preference of home death of terminal cancer patients in Hong Kong is low. We hope that understanding more of the obstructing and relieving factors for home death can facilitate home death in the future.
A global report found that the quality of dying in Hong Kong lagged behind that of other high-income economies. This study aims to examine the service gaps by conducting a qualitative exploratory study from multiple stakeholders' perspectives. Purposive and snowball sampling strategies were used to maximize variation in the sample. We interviewed 131 participants, including patients, family members, health care providers, administrators, lawyers, and policy makers. The situation analysis helped identify the facilitators and barriers at individual, organizational, and socio-cultural levels that affect service development. Findings showed that awareness on palliative and end-of-life care is growing, but the existing care is limited in terms of acceptability, coverage, variation in practices, continuity, and sustainability. A number of policy, economic, socio-cultural, environmental, and legal factors were also found to hinder service development. Findings of this study demonstrated that the development of palliative and end-of-life care services involved a paradigm shift relating to society as a whole. The overarching theme is to formulate a government-led policy framework. Furthermore, a public health approach has been advocated to create a supportive environment for service development.
The current study examined Posttraumatic Growth (PTG) experienced by bereaved pet owners in the United States, French-Canada, Japan, and Hong Kong following the death of their pet. Using qualitative methodology, we analyzed responses of participants who answered “yes” to a question about experiencing PTG and explored to what extent the cross-cultural responses mapped onto the five factors of the Posttraumatic Growth Inventory (PTGI). For the U.S. sample, 58% of responses mapped onto the PTGI. For French-Canada, 72% of responses mapped onto the PTGI. For Japan, 50% of responses mapped onto the PTGI and for Hong Kong, 39% of responses mapped onto the PTGI. We also explored emergent categories related to PTG for individuals who have lost a pet and discerned the unique aspects for PTG across cultures.
Death metaphors are a meaningful way to understand personal perceptions of death, an important construct affecting how people live. This study collected death metaphor data among 100 university students in Hong Kong in 2016 and compared the findings with another study reported in 2004. Interpersonally oriented death metaphors were still popular among students a decade later. There was a general decrease in positive perception of death and an increase in negative perception of death from 2004 to 2016. Death metaphors are useful tools in death education programs, especially in cultures where death is a taboo topic.
Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient-centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision-making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end-of-life care.
Cancer is the most common cause of mortality worldwide. Although recent advances of multiple modality cancer management have significantly improved the cure and control rates, a significant proportion of patients are still refractory to the standard and available treatments. Early initiation of palliative care can reduce cancer suffering, improve health-related quality of life and possibly prolong survival. It also allows patients and their caretakers to perceive the trajectory of their cancer, so that better and advanced care planning can be contemplated and implemented. The traditional beliefs and perceptions of cancer also differ significantly between the East and the West, which may also affect the preferential approach to palliative care. This review provides an overview of palliative care services in Hong Kong, as compared with other parts of the world. In addition, we shall also explore how cancer perceptions affect the decision-making on palliative care.
Introduction: The perceptions of medical futility and decisions about termination of resuscitation (TOR) for out-of-hospital cardiac arrest (OHCA) are highly heterogeneous and dependent on the practice of the attending emergency physicians. The objective of this study was to report and investigate the knowledge, attitudes, and practices regarding medical futility and TOR during management of OHCA in Hong Kong.
Methods: A cross-sectional survey was conducted among emergency medicine physicians in Hong Kong. The questionnaire assessed participants’ background, knowledge, attitudes, and behaviours concerning medical futility and TOR in management of OHCA. Composite scores were calculated to reflect knowledge, attitudes, and practices of OHCA treatment. Subgroup analysis and multiple regression analysis were used to explore the relationship between participants’ background, knowledge, attitudes, and behaviours.
Results: The response rate to this survey was 57% (140/247). Independent predictors of less aggressive resuscitation in OHCA patients included status as a Fellow of the Hong Kong College of Emergency Medicine (ß= -0.314, P=0.028) and being an Advanced Cardiac Life Support instructor (ß= -0.217, P=0.032). There was no difference in aggressiveness of resuscitation in terms of years of clinical experience (ß=0.015, P=0.921), knowledge of TOR (ß=0.057, P=0.509), or attitudes about TOR (ß= -0.103, P=0.214). The correlation between knowledge and attitudes was low (Spearman’s coefficient=0.02, P=0.795).
Conclusion: Clinical practice and behaviour of TOR was not demonstrated to have associations with knowledge or attitude. Status as a Fellow of the Hong Kong College of Emergency Medicine or Advanced Cardiac Life Support instructor were the only two parameters identified that had significant relationships with earlier TOR in medically futile patients with OHCA.
Relatively little is known about the experiences of Chinese widows, especially those living outside China. This qualitative study examines the experiences of eight Chinese or Hong Kong-born widows living in the UK. Using a semistructured approach to interviewing, participants were asked about their lives before, during, and after their spousal bereavement. Five major themes emerged: (1) complexity of marital lives; (2) experiences around the time of the death including fate; (3) loneliness and isolation; (4) the challenges of practical tasks; and finally, (5) current life. The implications of the findings for social policy and practice are briefly discussed.
AIMS: To develop a culturally relevant conceptual map to discover perceptions of a statutory form of advance directive for Hong Kong Chinese.
DESIGN: This was the first study on advance directive using a concept mapping approach with two phases.
METHODS: The data collection of the two phases were conducted from February 2016 - February 2017. In Phase I, 96 participants were recruited using purposive sampling. In Phase II, multi-dimensional scaling and hierarchical cluster analysis were used to create a concept map based on quantitative data.
RESULTS: The map depicted six clusters of factors affecting the acceptance of advance directive, with their importance rating in decreasing order: Conditional factor, value system, process of AD, physical and illness factor, personal situation factor and socio-cultural factor.
CONCLUSION: The study adopted a comprehensive approach to unfolding the multi-faceted factors affecting the acceptance of advance directives by stakeholders. Strategies targeting the clusters could be developed to facilitate the discussion and completion of advance directive.
It is common for patients with cancers in Hong Kong seeking Chinese Medicine (CM) therapies as supportive care during cancer treatment and to manage treatment-related side effects. This article provides clinical practice guideline (CPG) on the use of CM for specific clinical indications caused by cancer and during cancer treatment, including pain, constipation, and insomnia, and aims to guide local licensed CM practitioners and provide beneficial reference for social medical decision makers and patients. In this manuscript, we summarize the clinical manifestation, CM pattern classification, and CM intervention including herbal treatment, acupuncture treatment, regulating, and nursing based on pattern differentiation.
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.
BACKGROUND: Noncancer patients with life-limiting diseases often receive more intensive level of care in their final days of life, with more cardiopulmonary resuscitation performed and less do-not-resuscitate (DNR) orders in place. Nevertheless, death is still often a taboo across Chinese culture, and ethnic disparities could negatively affect DNR directives completion rates.
OBJECTIVES: We aim to explore whether Chinese noncancer patients are willing to sign their own DNR directives in a palliative specialist clinic, under a multidisciplinary team approach.
DESIGN: Retrospective chart review of all noncancer patients with life-limiting diseases referred to palliative specialist clinic at a tertiary hospital in Hong Kong over a 4-year period.
RESULTS: Over the study period, a total of 566 noncancer patients were seen, 119 of them completed their own DNR directives. Patients had a mean age of 74.9. Top 3 diagnoses were chronic renal failure (37%), congestive heart failure (16%), and motor neuron disease (11%). Forty-two percent of patients signed their DNR directives at first clinic attendance. Most Chinese patients (76.5%) invited family caregivers at DNR decision-making, especially for female gender (84.4% vs 69.1%; P = .047) and older (age >75) age group (86.2% vs 66.7%; P = .012). Of the 40 deceased patients, median time from signed directives to death was 5 months. Vast majority (95%) had their DNR directives being honored.
CONCLUSION: Health-care workers should be sensitive toward the cultural influence during advance care planning. Role of family for ethnic Chinese remains crucial and professionals should respect this family oriented decision-making.
Background: A life review is a promising intervention to enhance spiritual well-being in older people. Conventional life review interventions are lengthy and often led by psychologists.
Objectives: This is the first randomised controlled trial study to examine the effectiveness and applicability of a nurse-led short term life-review intervention in people with life limiting diseases, the purpose being to enhance their spiritual well-being and lower their anxiety and depression.
Design: A sequential mixed method approach, randomised controlled trial and qualitative evaluation, was adopted. The intervention group received the short version life review, and the control group attention placebo. Participants were randomly assigned to either intervention or control groups by computerised randomisation. Both participants and outcome assessors were blinded to the group assignment.
Settings: The study was conducted in three publicly funded regional hospitals in Hong Kong.
Participants: The target population were people suffering from life-limiting diseases, and receiving hospitalised, day hospice or outreach home care from the palliative care team.
Methods: Two sets of questionnaires were used: the spiritual sub-scale of the McGill Quality of Life Questionnaire, Hong Kong version and the Hospital Anxiety and Depression Scale, Chinese version. The intervention process was assessed by means of observation log sheets and semi-structured interviews of 12 participants.
Results: A total of 109 participants were recruited (54 in the intervention group, 55 in the control group). The intervention group showed significantly more improvement in spiritual well-being than the control group, with a Cohen’s d-effect size of 0.65. Although there were improvements in both anxiety and depression levels in the intervention group, statistical significance in between-group comparisons was not reached. The process evaluation found that most participants were highly involved (92.6%), interested (77.8 %) and participated in the intervention (79.6%). The participants described the intervention process as ‘comfortable’, ‘relaxing’ and ‘interesting’, and felt enlightened, with raised self-awareness, after it.
Conclusion: The nurse-led short term life-review intervention demonstrated significant improvement effects in spiritual well-being. Participant feedback on nurses’ performance was positive, finding the intervention acceptable and useful. The setting of the intervention has now been extended from bedside to home. It is recommended to incorporate life review into palliative nursing specialty training, empowering more nurses to deliver the intervention in their daily practice.
BACKGROUND: End-of-life (EOL) care in neonatal intensive care units (NICUs) can vary depending on religious beliefs of health care providers and families as well as the sociocultural environment. Although guidelines exist for EOL care in NICUs, most are based on Western studies, and little is known about such care in Asian countries, which have different religious and social background.
OBJECTIVE: This review synthesized empirical research to reveal the state of the science on infant EOL care in Asian countries.
DESIGN: This was an integrative review.
SETTING/SUBJECTS: Data were collected from studies identified in CINAHL, Embase, PsycINFO, and PubMed. The search was limited to current empirical studies involving infant EOL care in Asian countries and published in English between 2007 and 2016.
RESULTS: Of 286 studies initially identified, 11 empirical studies conducted in Hong Kong, India, Israel, Japan, Mongolia, Taiwan, and Turkey were included in the review. Four themes were captured: factors influencing decision making, trends in decision making, practical aspects of EOL care, and health care providers' preparation. In most NICUs, health care providers controlled decisions regarding use of life-sustaining treatment, with parents participating in decision making no more than 60% of the time. Although care decisions were gradually changing from "do everything" for patient survival to a more palliative approach, comfort care at the EOL was chosen no more than 63% of the time.
CONCLUSION: While infant EOL care practice and research vary by country, few articles address these matters in Asia. This integrative review characterizes infant EOL care in Asia and explores cultural influences on such care.
Long-term care (LTC) planning is important in helping the older people tackle their future needs better. The needs for LTC services represent generational characteristics as they may be different between the current and upcoming cohorts of older adults. However, very few studies have examined the cohort differences in terms of their expected utilisation of LTC services, while understanding the patterns is crucial in helping policy makers prepare for the development of LTC services. This study fills the research gap by examining the plans and expectations for LTC services of 1,613 middle-aged and older persons in Hong Kong with data collected from a telephone survey. By applying the Andersen Model to examine LTC expectations, this study analyses the LTC needs and plans of the middle-aged and older cohorts of Hong Kong adults, as well as their associated factors, with a multiple logistic regression method. Both gender and birth cohort were examined individually and in combination. Birth cohort and gender have been found to exert an impact on all aspects of LTC needs and planning to varying degrees. The findings are interpreted and contrasted with those of a key study based in the West, with reference to the contextual characteristics of Hong Kong. This study furthers the scholarly understanding on LTC needs and planning and their cohort effect, and draws evidence-based recommendations for LTC development in Hong Kong, a rapidly ageing East Asian society.
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.
BACKGROUND: Advanced neurology diseases including motor neuron disease (MND) are usually progressive life-limiting illness and could be devastating for patients, families and caregivers. Although medical technologies, such as enteral feeding and non-invasive ventilation, may prolong life expectancy of the patients, their utilization prompts important ethical questions in regard to their quality of life (QoL). Little attention had been paid on how ACP practice would practically help with patients suffering from different neurology diseases. We are unaware of any published studies on ACP practice among patients with different neurology diseases. In our study, we assessed end-of-life (EOL) care preferences, documentation, and communication in patients with various types of advanced neurology diseases.
METHODS: This was a retrospective chart review of all patients referred to the neuro-palliative care team (NPCT) in a local acute hospital in Hong Kong. The study was approved by the institutional review board of the University of Hong Kong. NPCT consultation was hand abstracted from the electronic health record if there was a subspecialty palliative care (PC) consultation note during the study period. Hand abstraction of data also included any content related to advance care planning (ACP) [advance directive (AD), resuscitation order, ventilator support, artificial feeding, patient wishes, legacy].
RESULTS: For patient who signed AD, items including cardiopulmonary resuscitation (100%), mechanical ventilation (100%), arti cial nutrition and hydration (80%) were mentioned more frequently than other EOL interventions. For patients who had ACP but without AD, the most common diagnosis is bad stroke (60%). Place of death, arti cial nutrition and hydration were most mentioned EOL interventions.
CONCLUSIONS: EOL decision making in patients with advanced neurology disease is often delayed. This study showed that MND patients are readier to discuss their EOL issues and signed their AD. The NPCT can play a valuable role in EOL discussions in patients with advanced neurology diseases under collaboration between the PC and the neurology teams.
BACKGROUND: To promote better care at the end stage of life in long-term care facilities, a culturally appropriate tool for identifying residents at the end of life is crucial.
OBJECTIVE: This study aimed to develop and validate a prognostic tool, the increased risk of death (IRD) scale, based on the minimum data set (MDS).
DESIGN: A retrospective study using data between 2005 and 2013 from six nursing homes in Hong Kong.
SETTING/SUBJECTS: A total of 2380 individuals were randomly divided into two equal-sized subsamples: Sample 1 was used for the development of the IRD scale and Sample 2 for validation.
MEASUREMENTS: The measures were MDS 2.0 items and mortality data from the discharge tracking forms. The nine items in the IRD scale (decline in cognitive status, decline in activities of daily living, cancer, renal failure, congestive heart failure, emphysema/chronic obstructive pulmonary disease, edema, shortness of breath, and loss of weight), were selected based on bivariate Cox proportional hazards regression.
RESULTS: The IRD scale was a strong predictor of mortality in both Sample 1 (HRsample1 = 1.50, 95% confidence interval [CI]: 1.37–1.65) and Sample 2 (HRsample2 = 1.31, 1.19–1.43), after adjusting for covariates. Hazard ratios (HRs) for residents who had an IRD score of 3 or above for Sample 1 and Sample 2 were 3.32 (2.12–5.21) and 2.00 (1.30–3.09), respectively.
CONCLUSIONS: The IRD scale is a promising tool for identifying nursing home residents at increased risk of death. We recommend the tool to be incorporated into the care protocol of long-term care facilities in Hong Kong.