公共政策研究資助計劃 - policy innovation and co-ordination officepdf)/2016... · 2018. 5....

PUBLIC POLICY RESEARCH FUNDING SCHEME

公共政策研究資助計劃 Project Number : 項目編號：

2016.A4.022.16C

Project Title : 項目名稱：

A Study on the Development of Palliative and End-of-Life Care Services in Hong Kong 有關本地紓緩及臨終照顧服務發展之研究

Principal Investigator : 首席研究員：

Professor CHAN Yue Lai Helen 陳裕麗教授

Institution/Think Tank : 院校／智庫：

The Chinese University of Hong Kong 香港中文大學

Project Duration (Month): 推行期 (月) ：

12

Funding (HK$) : 總金額 (HK$)：

480,801.00

This research report is uploaded onto the Policy Innovation and Co-ordination Office’s (PICO’s) website for public reference. The views expressed in this report are those of the Research Team of this project and do not represent the views of PICO and/or the Assessment Panel. PICO and/or the Assessment Panel do not guarantee the accuracy of the data included in this report.

Please observe the “Intellectual Property Rights & Use of Project Data” as stipulated in

the Guidance Notes of the Public Policy Research Funding Scheme. A suitable acknowledgement of the funding from PICO should be included in any

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The English version shall prevail whenever there is any discrepancy between the

English and Chinese versions. 此研究報告已上載至政策創新與統籌辦事處（創新辦）網站，供公眾查閱。報告內所表

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Final Report

A Study on the Development of Palliative and End-of-Life Care Services in Hong Kong

(Project code: 2016.A4.022.16C)

Submitted to

Central Policy Unit

The Government of Hong Kong Special Administrative Region

By

Helen YL Chan, RN, PhD

Diana TF Lee, RN, PhD

Jean Woo, MD, FRCP, FRACP, FFPH

Huso Yi, PhD

December 2017

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RESEARCH TEAM

Principal Investigator: Dr Helen Yue-lai Chan, Associate Professor, The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong.

Co-Investigators: Professor Diana Tze-fan Lee, Professor of Nursing, The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong; Director, Y.K. Pao Foundation Centre for Nursing Excellence in Chronic Illness Care; Deputy Director, CUHK Jockey Club Institute of Aging.

Professor Jean Woo, Henry G Leong Research Professor of Gerontology and Geriatrics, Emeritus Professor of Medicine; Director, CUHK Jockey Club Institute of Ageing, The Chinese University of Hong Kong.

Dr Huso Yi, Assistant Professor, The Jockey Club School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong; Director of Research, CUHK Centre for Bioethics.

ACKNOWLEDGEMENTS

This research project (Project Number: 2016.A4.022.16C) is funded by the Public Policy Research Funding Scheme from the Central Policy Unit of the Hong Kong Special Administrative Region Government. We would like to express our heartfelt gratitude to all the participants for their support to the study. We would also like to thank Ms Leung Yin Shan for her help with the project management.

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Table of Contents

Page

ABSTRACT 6

(ABSTRACT IN CHINESE) 8

LAYMAN SUMMARY 10

(LAYMAN SUMMARY IN CHINESE) 11

1. BACKGROUND 12 1.1 Definition of palliative and end-of-life care 12 1.2 Development of palliative and end-of-life care 12 1.3 Impacts of palliative and end-of-life care 13 1.4 Palliative and end-of-life care services in Hong Kong 13 1.5 Research gap 16

2. STUDY OBJECTIVES 16 3. RESEARCH METHODOLOGY 17

3.1 Study design 17 3.2 Participants 17 3.3 Sampling strategy 18 3.4 Interview 18 3.5 Data collection procedures 19 3.6 Data analysis 19 3.7 Rigor 20 3.8 Study limitations 20

4. PARTICIPANTS’ PROFILES 21 4.1 Types of participants 21 4.2 Characteristics of patients 22 4.3 Characteristics of family carers 22 4.4 Characteristics of health professionals 24 4.5 Characteristics of administrators 25 4.6 Characteristics of frontline care staff 26 4.7 Characteristics of others 27

5. FINDINGS 28 5.1 Strengths 28

High-quality services 28 Comfortable environment 28 Interdisciplinary collaboration 28 Committed staff 29

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5.2 Weaknesses 29 Physical environment 29

Cramped environment 29 System and processes 29

Limited coverage 29 Poor accessibility 30 Incongruent opinions 30 Inconsistent practices 30 Fragmentation of care 31 Delayed referral 31 Rigid operations 31 Unpreparedness for bad news 31 Family influence 32 Inattention to dignity 32

Human resources 33 Lack of knowledge about palliative care 33 Lack of recognition in the field 33 Lack of clarity in roles and responsibilities 33

5.3 Opportunities 34 Leaders’ support 34 Changes in demographic and morbidity patterns 34 Highlighted in corporate direction 34 Gaining mass media attention 35

5.4 Threats 35 Curative-oriented approach 35 Heavy clinical workload 35 Moral distress among healthcare providers 36 Inadequate coverage in professional education 36 On-the-job training on preference basis 36 Lack of primary care 37 Inadequate community and home care support 37

5.5 Barriers or challenges to the service development 37 Political 37

Lack of an overall policy framework 37 Economic 38

Unstable financial support 38 Socio-cultural 38

Death-denial culture 38 Myths about filial piety 39 Strong belief in medical authority 39

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Misunderstandings about the palliative care approach

40

Technological 40 Inconvenient transportation 40 Unsupportive climate for research 41

Environmental 41 Unfavourable environment for dying in place 42

Legal 42 Concern about liability and accountability 42 Uncertainty about advance directives 44

6. POLICY IMPLICATIONS AND RECOMMENDATIONS 45 6.1 Key principles for services development 45

i. Fair access 45 ii. Compassionate care 45 iii. Early integration 46 iv. Shared decision-making 46 v. Continuity of care 46

6.2 Recommendations 46

REFERENCES 50

PUBLIC DISSEMINATION 52

APPENDICES Appendix A. Interview guides 53 Appendix B. Sharing of the study findings in a local newspaper 55

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ABSTRACT

Background: Palliative and end-of-life care has received unprecedented and wide-ranging attention at the medical and societal levels due to changes in morbidity and mortality patterns. Although relevant care services has been initiated in Hong Kong for nearly four decades, a recent report found that its quality lagged behind that of other high-income economies, including the UK, Australia, Singapore, Japan and Taiwan. Study aim: This study explored the views, experiences and expectations towards the local development of palliative and end-of-life care services from different perspectives. Methods: This study adopted a qualitative exploratory approach. Individual and focus group interviews were conducted to solicit views from a range of stakeholders, including patients, family carers, health professionals, administrators, lawyers, policymakers, volunteers, scholars and journalist. Thematic analysis was based on a situational analysis framework. Purposive and snowball sampling strategies were used to maximize variation in the sample. All participation was conducted on a voluntary and anonymous basis. Findings: A total of 131 participants were recruited from different care settings. Three gaps in the existing palliative and end-of-life care were identified from the findings. These were the lack of consensus among specialties and disciplines; poor continuity of care between hospital and community care; and inadequate communication between health professionals and lay public. The subthemes which emerged from their sharing were further categorized in terms of strengths, weaknesses, opportunities and threats at the individual, organizational and micro-environment levels and barriers or challenges at the macro-environment level.

Strengths: The existing palliative and end-of-life care was highly commendable in terms of its quality, environment, and committed staff with the support of interdisciplinary collaboration. Weaknesses: However, the care service was limited by a range of operational and system issues that affected its coverage, accessibility, practices, continuity, and quality. On the other hand, its provision was also influenced by public awareness and staff readiness. Opportunities: Four major opportunities were identified to support care service development. These were leaders’ support; changes in demographic and

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morbidity patterns; new corporate and government direction; and gaining mass media attention. Threats: Its development may be threatened by various factors, ranging from the curative-oriented approach, heavy clinical workload, moral distress among health care providers, and inadequate professional training, together with insufficient primary care, community care and home care support. Barriers and challenges to the service development: From a wider perspective, a number of political, economic, socio-cultural, technological, environmental and legal factors were also identified as hindering the further development of the service.

Policy implications: The findings of this study demonstrated that the development of palliative and end-of-life care service involved a paradigm shift relating to society as a whole.

Key principles for service development: Five principles emerged from the participants’ expectations towards the local development of palliative and end-of-life care. These are fair access; compassionate care; early integration; shared decision-making; and continuity of care. Recommendations: Based on the five principles which emerged from the findings, ten recommendations on the key elements to be included in the future service developments were formulated. These are:

1. Revisiting the goal of medicine 2. Ensuring health equity in the access to palliative and end-of-life care 3. Advocating for leadership to guide the policy framework development 4. Addressing the legal barriers to the development of palliative and end-of-

life care 5. Maintaining adequate and continuous funding in the provision of quality

palliative and end-of-life care 6. Building professional capacity in the service provision 7. Increasing public awareness and knowledge about palliative and end-of-

life care 8. Integrating the palliative care approach into different specialties and care

settings 9. Fostering inter-professional partnerships 10. Developing evidence to inform the practice

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LAYMAN SUMMARY

Optimising the care for people with serious chronic progressive health problems until the end of life has been prioritized in the policy agenda globally over the recent years. This study aimed to explore different perspectives from a range of stakeholders, including patients, family carers, health professionals, administrators and frontline care staff, on the development of palliative and end-of-life care in Hong Kong. There were 131 participants being interviewed in individual or group format. Three gaps which hindered the local service development were identified from the findings. These were the lack of consensus among specialties and disciplines; poor continuity of care between hospital and community care; and inadequate communication between health professionals and lay public. It appeared that the services were limited in terms of coverage, acceptability and continuity. The various influencing factors ranged from individual awareness towards the concept to factors relating to system and operations at the organizational level in various health care settings. A number of political, economic, socio-cultural, technological, environmental, and legal factors were also identified as hindering the further development of the service. Therefore, it is imperative to have a government-led policy framework to guide the development in a comprehensive and systematic manner, reallocate the resources, devise culturally appropriate support, manpower planning and public education. All these strategies would help to promote the coverage and sustainability of the care services.

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1. BACKGROUND

1.1 Definition of palliative and end-of-life care

Palliative care is defined as a care approach broadly for people with “serious chronic, complex or life-limiting health problems” (Gomez-Batiste et al., 2017, p.51). The major goals are to optimise the quality of life and maximize the dignity of patients and their family members throughout the course of illness (Gomez-Batiste et al., 2017). Palliative care covers the management of pain and distressing symptoms, issues related to psychological, social and spiritual aspects arising along the illness trajectory, and support which helps the patients to live as actively as possible in the last phase of life and which also helps family members to cope with the patient’s illness and death (World Health Organization [WHO], 2016). The definition of end-of-life care vary. It has been used to describe the total care provided in the last phase of life (Worldwide Palliative Care Alliance, 2014), but the British Medical Association suggested that end-of-life care “does not just equate with dying…[because] the care phase may last for days, week, months, or even longer” (British Medical Association [BMA], 2016, p.5).

1.2 Development of palliative and end-of-life care

The concept of palliative care originated in the hospice care movement in the late 1960s in recognition of the complex care needs of people with terminal cancer (Clark, 2007). Dame Cicely Saunders asserted that these dying patients suffered from “total pain” (this includes physical, psychological, social and spiritual distress) at the end of their life. The St Christopher’s Hospice in London, built in 1967, was the first modern hospice (Richmond, 2005). After 20 years, palliative care was formally recognized as a medical specialty by the Royal College of Physicians and thereafter formal training for palliative medicine was established (Clark & Graham, 2011; Keeley, 2011). In recent years, it has been advocated that palliative care should be integrated into the care of people with chronic progressive conditions, including but not limited to cardiovascular diseases, heart or kidney failure, chronic obstructive pulmonary disease, neurological degenerative diseases, dementia, and some congenital anomalies (Gomez-Batiste et al., 2017, Murray, Kendall, Mitchell, Moine, Amblas-Novellas, & Boyd, 2017). Evidence shows that people with chronic progressive conditions also experience complex care needs along their illness trajectories and that their symptom distress was comparable or worse than those with terminal

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cancer (World Health Organization, 2012; Scottish Partnership for Palliative Care, 2015). Hence, the 2014 World Health Assembly Resolution highlighted that the provision of palliative care “is an ethical responsibility of health systems” that should be expanded to a wider population. Palliative care services should no longer be based solely within a hospice, but integrated into primary and secondary care in hospital care and community care services (Keeley, 2011). Therefore, a number of well-developed regions and countries are formulating national policies to guide the development of palliative and end-of-life care. For example, the National Palliative and End of Life Care Partnership of the UK issued a national framework for local action 2015-2020, entitled Ambitions for Palliative and End of Life Care, in 2015. The Scottish Government also published a national Strategic Framework for Action on Palliative and End of Life Care 2016-2021. The Australian Commission on Safety and Quality in Health Care issued the National Consensus Statement: Essential Elements for Safe and High-quality End-of-life care in 2015. The Institute of Medicine of the US also released a report namely Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life in 2014. Likewise, in the Asian regions, the Ministry of Health in Singapore commissioned the Lien Centre for Palliative Care and Duke-NUS Graduate Medical School to formulate a National Strategy for Palliative Care in 2011. In Taiwan, the Patient Self-Determination Act and the Hospice Palliative Care Act were passed in 2015 and 2016 respectively that allow patients to refuse life-sustaining treatments in certain illness conditions. Similar initiatives and policy discussions are underway in many other regions and countries. 1.3 Impacts of palliative and end-of-life care

Empirical studies across different care settings and countries have consistently found that the quality of life of patients with various serious illnesses is improved through palliative care, when compared to patients receiving usual care only (Lorenz et al., 2008; Rocque & Clearly, 2013; Rubin, 2015). Furthermore, the early integration of palliative care is effective in managing pain and distressing symptoms, resulting in reduced health care utilization and improved survival rates (Dionne-Odorn et al., 2015; Rubin, 2015; Seow et al., 2014; Smith, Brick, O’Hara & Normand, 2014; Temel et al., 2010, Zimmermann et al., 2014). It has also been noted that palliative care helps to alleviate the caregiver burden of family members (Lorenz et al., 2008).

1.4 Palliative and end-of-life care services in Hong Kong

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Palliative care was introduced into Hong Kong as a specialist service in the 1980s. The first palliative care team and home care programme was pioneered for patients with terminal cancer at Our Lady of Maryknoll Hospital, a general hospital, in 1982. Thereafter, hospice services were also provided in four other hospitals (Nam Long Hospital, Haven of Hope Hospital, United Christian Hospital and Ruttonjee Hospital) between 1986 and 1988 (Chan, 2002; Sham, 2003). In 1985, a voluntary organization, the Society for the Promotion of Hospice Care, was founded to promote the concept of palliative care and build the first independent hospice in Hong Kong, namely, the Bradbury Hospice, in 1992 (Chan, 2002). Now, there are approximately 500 palliative care beds, with around 360 provided by 16 public hospitals in different regions and the remaining provided by three private hospices. In the past, doctors and nurses received palliative care training in the United Kingdom. Formal training for nurses was then organized by the Hospital Authority and Bradbury Hospice as post registration certificate course since 1995. In recent years, education and training had also been provided to health professionals in general wards and care home staff by the Hospital Authority, NGOs and professional societies to equip them with skills and knowledge about palliative and end-of-life care (Legislative Council of Hong Kong, 2016). Up to 2011, there were 23 physician fellows in the specialty of physician fellows accounting for 1.3% of total number of physician fellows, whereas around 300 nurses (including 230 registered/enrolled nurses and 60 nurses at the grade of advanced practice nurse or above) engaged in the provision of palliative care, accounting for around 1.3% of total number of nursing staff in Hospital Authority. Of them, half (52%) had received specialty training. As the palliative care needs of patients are usually complex, it has been widely recognized the importance of having multidisciplinary team support. At present, the palliative care teams are usually composed of doctors, nurses, physiotherapies, occupational therapist, and pastoral services. Clinical psychologists and medical social workers were also added in public healthcare sector since 2012, which incurred an additional funding of about $12 million per year, to address the psychosocial needs of terminally ill patients and their carers (Legislative Council of Hong Kong, 2016). During these years, palliative care service has expanded its breadth. In addition to inpatient care, there are a range of services, such as specialist outpatient clinics, palliative nurse-led clinics, day care centres, phone consultation services, home care services, and bereavement counselling. The services have also extended

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from cancer patients to patients with end-stage organ failure. Different end-of-life care models have been developed in clinical settings (Hui et al., 2014; Lo et al., 2010; Woo, Lo, Cheng, Wong, & Mak, 2011). Several non-government organizations (NGOs) and professional organizations in Hong Kong have launched various programmes to promote or enhance palliative and end-of-life care in their services. Charitable foundations, including but not limited to The Li Ka Shing Foundation, The Jockey Club Charities Trust and The Board of Management of The Chinese Permanent Cemeteries had invested substantial funding to support the development and capacity building in the past few years. Research studies to examine the palliative and end-of-life care on patients in the local community are growing in number (Wang & Chan, 2015). In addition, the Social Welfare Department now also requires the contract care homes for the elderly to integrate end-of-life care into their care services (Legislative Council of Hong Kong, 2014). At the governance level, the Law Reform Commission (LRC) and the Food and Health Bureau (FHB) had published consultation papers on introducing the concept of advance directives in 2004 and 2009 respectively (LRC, 2004, 2006; FHB, 2009). To provide guidance for clinicians on various end-of-life care issues, the Hospital Authority (HA) has issued various guidelines, including Guidance for clinicians on advance directives in 2010 (updated in 2014), Do-Not-Attempt Cardiopulmonary Resuscitation (DNACPR) in 2014, and updated the Guidelines on Life-sustaining treatments for severely ill patients in 2015. This year, the Hospital Authority which managed most of the hospitals in Hong Kong formulated a strategic service framework for palliative care to guide the service development in the coming years (HA, 2017). However, the impacts of these efforts on the clinical practices have not been studied systematically. Despite these efforts, the 2015 Quality of Death Report published by the Economist Intelligence Unit showed that palliative and end-of-life care in Hong Kong lagged behind that of many other high-income countries. Out of 80 regions, Hong Kong ranked at position 22, lower than several other Asia-Pacific economies, including Taiwan (at position 6), Singapore (at position 12), Japan (at position 14) and South Korea (at position 18). The Quality of Death Index comprised 20 indicators in five aspects. It was highlighted in the report that the ranking of Hong Kong in the aspect of its palliative and healthcare environment was relatively low among the high-income regions. It is situated at position 28 because of its low scorings “in terms of overall healthcare spending, the availability of research-based policy evaluation, and its capacity to deliver palliative care services” (p.22).

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Another category in which Hong Kong was rated relatively low was “community engagement” (at position 38). 1.5 Research gap

This study made a timely examination of the existing local palliative and end-of-life care services in a systematic and comprehensive manner. While palliative care was introduced into Hong Kong nearly 40 years ago and a number of initiatives have been launched by public sector bodies and NGOs to promote its coverage and acceptability throughout these decades, the ranking of its quality was unsatisfactory. In this study, a range of stakeholders were invited to share their views towards the existing services and their expectations towards its development. The findings will be important in formulating strategies and culturally specific recommendations so as to maximize the synergistic effects of various endeavours and to enhance their sustainability.

2. STUDY OBJECTIVES

The study objectives are:

1) to conduct a comprehensive and systematic situation analysis of the existing palliative and end-of-life care services in Hong Kong;

2) to define the key principles and elements for guiding the development of palliative and end-of-life care in Hong Kong;

3) to identify the barriers or challenges at individual, organizational, and micro- and macro-environmental levels that hinder the development of palliative and end-of-life care in Hong Kong; and

4) to devise a strategic framework for palliative and end-of-life care in Hong Kong in terms of service provision, capacity building, public awareness and governance

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3. RESEARCH METHODOLOGY

3.1 Study design

This study adopted a qualitative exploratory approach to gain a fuller understanding of the current situation of palliative and end-of-life care in Hong Kong. Interviews were conducted to solicit views from a range of stakeholders and to thereby enable a rich understanding of the phenomenon. The focus of the interview was based on two situation analysis approaches. Through SWOT analysis, the strengths, weaknesses, opportunities and threats related to the local palliative and end-of-life care were identified. PESTEL analysis further provided a framework for identifying barriers and challenges in the political, economic, socio-cultural, technological, environmental and legal aspects in the macro-environment.

3.2 Participants

A range of stakeholders were recruited for the study. These included people who have been involved in providing palliative and end-of-life care to patients with terminal cancer or end-stage diseases at different positions in a range of care settings; people who worked in organizations which have promoted or studied the concept of palliative and end-of-life care in the community; and potential and actual care recipients of palliative and end-of-life care. It was planned that a heterogeneous sample of participants, including clinicians of different levels, care recipients and all relevant parties involved in the care provision and development or promotion, were recruited. The specific inclusion criteria for each group of participants are described as follows:

1) Patients: Patients who are aged over 18 years and diagnosed with advanced cancer or chronic progressive diseases, and who had received care at a palliative care unit or an oncology unit or geriatric care in hospitals or residential care homes for the elderly (RCHEs);

2) Family carers: Informal carers who are aged over 18 years and have been actively involved in the care of their spouses, parents or significant others with a diagnosis of terminal cancer or end-stage disease;

3) Medical doctors: Medical doctors of various ranks involved in palliative care or end-of-life care services either in hospital or in community care services;

4) Nurses: Nurses of various ranks, including those at frontline care (Enrolled Nurse, Registered Nurse, Advanced Practice Nurse/Nurse Specialist), in administrative and managerial roles (Senior Nursing Officer, Manager, Superintendent, Nurse Consultant) who are involved in patient care and management in hospitals, RCHEs or NGOs;

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5) Allied health professionals: Allied health professionals from different disciplines, including physiotherapists, occupational therapists, speech therapists, dieticians, social workers and clinical psychologists, in hospitals, RCHEs or NGOs;

6) Frontline care staff: Frontline care staff, including healthcare assistants, personal care workers, health workers and ambulance men, either in hospitals or RCHEs;

7) Administrators: Administrators of NGOs or RCHEs who have launched initiatives or projects related to palliative and end-of-life care in their services; and

8) Others: Academics or researchers in the disciplines of health, social science and law who have been involved in teaching or research studies related to palliative and end-of-life care, journalists who have reported about palliative and end-of-life care in Hong Kong through the mass media, and policymakers involved in related services. Chaplain and representatives of different religious groups involved in client care in hospitals, RCHEs or NGOs were also included.

3.3 Sampling strategy

Purposive and snowball sampling strategies were used to maximize variation in terms of clinical/illness/caring experience, age, gender, educational and training level, disciplines, care settings, family structure (for patients and carers) in the sample. Participant recruitment was based on the investigators’ established networks, including palliative care units, oncology units, medical and geriatric wards, community geriatric assessment teams and intensive care units in different hospitals, subvented and private RCHEs, community care services, NGOs, universities, relevant research centres and professional societies. Quota sampling was used to ensure the representativeness of each category in the sample.

3.4 Interviews

Individual interviews were conducted with representatives and leaders with deep experience of palliative and end-of-life care in the field, potential care recipients, family members, and other stakeholders who are interested in the field to explore more in-depth information. Individual interviews allowed more time for each participant to give in-depth sharing and so it was used as the data collection strategy for key representatives and clinicians with rich experience in the field, and people who have experienced receiving the care or taking care of relatives who had received the care. On the contrary, frontline staff members, allied health

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professionals or people not having been involved in the care directly may have relatively fewer insights into the field, and therefore focus group interviews were used as a data collection strategy. The focus group interviews enabled the investigators to reach out and gather views from a larger and heterogeneous sample of participants within a short period. The interaction between the participants in the group may also stimulate them to share more information between each other. To ensure that the participants are comfortable about sharing their views within the group, they were divided into groups based on their positions, ranks, disciplines or seniority. Participants with a similar background were placed together in the same group.

3.5 Data collection procedures

Ethical approval for this study was sought from the CUHK Survey and Behavioural Research Ethics Committee. All of the interviews were conducted in Cantonese by the Principal Investigator and a trained research assistant. The interview questions were written both in English and Chinese, and printed in hardcopies for participants’ reference. The interviews were arranged at times and places convenient to the participants. Initially, the investigators sent individual invitations by email or post to health professionals and administrators in different hospitals and organizations, and to members of professional groups to invite them to participate in the study. A poster about the study was designed and posted in social media to invite people in different capacities to join. This was to ensure a heterogeneous group with different voices could be included in the sample. Upon obtaining their written consent, participants were asked to complete a data collection form about their personal demographic, such as age, gender, and educational level. The interviews were audio-recorded with the participant’s consent and transcribed verbatim to ensure an accurate record of the sharing. Each individual interview lasted for about 45 to 60 minutes, whereas each focus group interview lasted for about 90 to 120 minutes.

3.6 Data analysis

Data collection and analysis were conducted in an iterative process. Descriptive statistics were used to summarize the demographic background of the participants. Thematic analysis was used to identify the key issues which emerged from the qualitative data analysis (Braun & Clarke, 2006). Firstly, the investigators read through the transcripts to gain a whole picture. Then, an initial list of codes was identified based on the framework of the SWOT and the PESTEL analyses. The codes were compared constantly for similarities and differences to identify

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ambiguities and overlaps. This facilitated the identification of persistent patterns and differences within and across the codes. The codes were collated into themes at a broader level that exhibited the latent content in the context. The process required repeated reviewing and refinement. QSR NVivo version 10.0 was used to support data management. Extracts from transcripts that reflected and epitomized the themes in the findings were selected. These data were later contrasted with additional data until a saturation point was reached.

3.7 Rigor

The trustworthiness of the study was enhanced through various strategies (Lincoln & Guba, 1985). All the audio-recordings, transcripts, field notes following the interviews, and data reconstruction products during the study process were kept, so as to provide an audit trail. The research team reviewed the findings to prevent idiosyncratic data interpretations. Member checking was conducted to ensure the accuracy in data interpretation. Peer debriefing with other scholars in the field was conducted to achieve external validation. Rich and thick description of each subtheme were provided, to enable transferability.

3.8 Study limitations

We acknowledged participation bias as a limitation of this study. People who were willing to participate in this study were more interested in the topic. We try to address this problem by inviting a wide range of people with different background and experiences with the palliative and end-of-life care services through purposive sampling. During the study process, contradictory or disconfirming evidence were sought to explore conflicting accounts or viewpoints and rival explanations. This approach contributed to a more comprehensive understanding of the phenomenon of interest and thus avoid premature closure.

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4. PARTICIPANTS’ PROFILES

4.1 Types of participants

We interviewed a total of 131 participants through 20 focus group interviews and 43 individual interviews. As listed in Table 1, the participants included 25 patients, 15 family carers, 50 health professionals from different specialties, 15 administrators of different care settings, 15 frontline care staff, and other stakeholders who were interested in the topic in the disciplines of law, research, policy, voluntary services and mass media. The demographic characteristics of the participants are shown in Tables 2 to 7.

Table 1. Types of participants

Categories Subcategories Patients / Family carers / Health professionals Doctors

Nurses Social workers Physiotherapists Speech therapists Clinical psychologists

Administrators / Frontline care staff Personal care workers / assistants

Health workers Chaplain / Pastoral care Ambulance men

Others Researchers Lawyers Policy-makers Journalists Volunteers

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4.2 Characteristics of patients

Twenty-five patients were recruited through hospitals and community services. All of them had diagnosed with cancer or chronic progressive condition, but most of them were uncertain if they had been referred to or they were receiving palliative care services.

Table 2. Characteristics of patients (n=25)

n (%) Gender Female 14 (56) Male

11 (44)

Age < 65 6 (24) > 65

18 (72)

Education Primary or below 8 (32) Secondary 13 (52) Tertiary

2 (8)

Religion Worship ancestor 1 (4) Catholic 2 (8) Christian 7 (28) Buddhist 1 (5.3) Not specified

14 (62.3)

Living status Alone 5 (20) Family 20 (80) Duration of receiving PC service

1 – 3 months 2 (8.0) Uncertain 23 (92.0)

4.3 Characteristics of family carers

All the fifteen family carers were female, in the relationship with the patient as wife or girlfriend, daughters, granddaughters or daughter-in-law. The team had tried to invite male family carers to the study to avoid gender bias but unsuccessful. Most of the participants had completed tertiary education and their involvement in the providing care to the sick family members were less than one year. Approximately half of the participants knew that their family members had been referred to palliative care services.

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Table 3. Characteristics of family carers (n=15)

n (%) Gender Female 15 (100) Male

0 (0)

Relationship with the patient

Partner/Spouse 3 (20.1) Children 6 (40)

Grandchildren 3 (20.1) Daughter-in law

3 (20)

Age < 30 1 (6.7) 31-40 8 (53.3) 41-50 3 (20.0) 51-60 2 (13.3) > 60 1 (6.7) Education Secondary education 2 (13.3) Tertiary education

13 (86.7)

Religion Christian 7 (46.7) Catholic 1 (6.7) Buddhist 1 (6.7) Not specified

6 (40.0)

Residence of patient Home 12 (80.4) Alone at home

Family members 1 (6.7) 11 (73.7)

Residential care homes for the elderly 3 (20.1) Duration of receiving PC service

>12 months 2 (13.4) 1 – 3 months 3 (20.1) < 1 month 1 (6.7) 1 week 2 (13.3)

Uncertain 2 (13.3) No PC service referral 5 (33.5) Duration of providing care to the patient

1 month 1 (6.7) 2 – 6 months 9 (60.3)

1 year 1 (6.7) > 3 years 4 (26.8)

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4.4 Characteristics of health professionals

The health professionals who participated in the study were from different disciplines and positions from a wide range of specialties, including geriatrics, paediatrics, oncology, palliative care, family medicine, rehabilitation, and community services. They were currently working at hospitals, residential care homes for the elderly, non-government organizations, or in private practice. All of them were involved in the treatment and care of patients and their family members. Around two-thirds of them had received training about palliative care, although the types varied from attending seminar to overseas placement.

Table 4. Characteristics of health professionals (n=50)

n(%) Professions Doctors 15 (30.0) Nurses 16 (32.0) Physiotherapist 7 (14.0) Social Worker 7 (14.0) Speech Therapist 3 (6.0) Clinical Psychologist 2 (4.0) Gender Female 18 (36.0) Male 32 (64.0) Age < 30 8 (16.0) 31-40 13 (26.0) 41-50 9 (18.0) 51-60 16 (32.0) > 60 4 (8.0) Education Bachelor 19 (38.0) Master 24 (48.0) Doctoral 7 (14.0) Clinical experience (year) (Mean ± SD) 17.9 11.9

(Range: 8 months – 30 years) Experience on palliative care (year) (Mean ± SD) 9.3 9.1

(Range: 0 – 30 years) Had received training related to palliative care 35 (70.0) Place to receive training

Local 19 (38.0) Local and overseas 12 (24.0)

Overseas 4 (8.0)

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4.5 Characteristics of administrators

The administrators included staff at management levels at hospitals, residential care homes for the elderly and non-government organizations. They had the experience of providing support to the development of palliative or end-of-life care services in different capacities, for example supervising or coordinating projects related to palliative care services. Around one-third of them had received training related to palliative care.

Table 5. Characteristics of administrators (n=15)

N (%) Gender Female 9 (60.0) Male 6 (40.0) Age < 30 1 (6.7) 31-40 3 (20.0) 41-50 6 (26.7) 51-60 7 (46.7) > 60 0 Education Bachelor 4 (26.7)

Master 11 (73.3)

Clinical experience (year) (Mean ± SD) 16.9 10.4 (Range: 0 months – 35 years)

Experience on palliative care (year) (Mean ± SD) 4.4 5.9

(Range: 0 – 20 years) Had received training related to palliative care 6 (40.0) Place to receive training


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4.6 Characteristics of frontline care staff

The frontline care staff participated in the study were also recruited from different hospitals, residential care homes for the elderly and non-government organizations. All of them were mainly responsible for direct care, such as bedside care or personal care, for patients. The majority of them were female. Approximately half of them received local training about palliative care.

Table 6. Characteristics of frontline care staff (n=15)

N (%) Gender Female 13 (86.7) Male 2 (13.3) Age < 30 1 (6.7) 31-40 2 (13.3) 41-50 4 (26.7) 51-60 7 (46.7) > 60 1 (6.7) Education

Primary education 1 (6.7) Secondary education 6 (40.0) Bachelor 7 (46.7) Master 1 (6.7)

Clinical experience (year) (Mean ± SD) 12.8 9.4

(Range: 15 months – 30 years) Experience on palliative care (year) (Mean ± SD) 2.2 3.82

(Range: 0 – 15 years) Had received training related to palliative care 8 (72.7) Place to receive training Local 8 (72.7)

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4.7 Characteristics of others

The participants in the category of others representative a diverse group of stakeholders in the community who were interested in promoting the development of palliative and end-of-life care though their works were not limited to this focus. While some of them were working in universities, non-government organizations or private organizations, some were for voluntary services. Two thirds of them had received training related to palliative care, usually on their own expenses.

Table 7. Characteristics of others (n=11)

N (%) Gender Female 8 (72.7) Male 3 (27.3) Age 31-40 3 (27.3) 41-50 2 (18.2) 51-60 6 (54.5) Education Secondary education 2 (18.2) Bachelor 3 (27.30 Master 1 (9.1) Doctoral 5 (45.5) Had received training related to palliative care 7 (63.6) Place to receive training


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5. FINDINGS

Three major gaps were identified in the existing palliative and end-of-life care based on the findings, namely the lack of consensus among specialties and disciplines, poor continuity of care between hospital and community care, and inadequate communication between health professionals and lay public This section summarizes the strengths, weakness, opportunities and threats at individual, organizational and micro-environment levels related to the local palliative and end-of-life care service development and the barriers or challenges in the political, economic, socio-cultural, technological, environmental and legal aspects at the macro-environment level. The findings reported are based on the majority views unless otherwise specified.

5.1 Strengths

High-quality services The participants who had had direct contact with palliative care services found them to be generally commendable. One participant said she was astonished by the differences between the acute ward and the palliative care ward when her grandmother was transferred to the palliative care ward. She described the transition as like moving from hell to heaven. Comfortable environment Many participants described the palliative care settings, including the palliative care wards and hospices, as snug and homely places. For example, sofas were placed in quiet corners, or there was a living room where people could sit and chat. They were also able to make some simple dishes in a kitchen. Some of these places were linked to a garden outside, which, although small, was relaxing and refreshing. There were usually no restrictions on visiting hours. Family members could accompany the patients overnight if they are critically ill, and the staff try to arrange a single bedroom for them, if necessary. Interdisciplinary collaboration The participants emphasized the importance of interdisciplinary collaboration in palliative care services to address the needs of the patients and their family members. Case discussion was a common practice. During such discussions, the health professionals from different disciplines, including medical doctors, nurses,

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social workers, allied health professionals and sometimes chaplains, met and discussed the care plan. Other examples were the pharmacist who conducted ward rounds to assess the patients’ responses to medication, the chef who conducted ward rounds to find out the patient’s favourite food, and the volunteers who walked around in the ward to chat with the patients and their family members. Committed staff The attitudes of the staff working in the palliative care services were highly appreciated. They were characterized by the participants as caring, gentle and patient. One carer was grateful to a palliative care nurse because, when her mother was in a critical condition, the nurse explained how her mother may react during the dying process, taught what she could do patiently, and accompanied her during the process. All these things psychologically prepared her and thus reduced her anxiety and fear about death. Some participants also appreciated the health professionals for being willing to respond to their calls outside their working hours whenever they encountered problems with home care. However, some participants also viewed this merit as a limitation of the current service development and promotion because its sustainability should not be reliant on a group of committed and passionate staff only.

5.2 Weaknesses

Physical environment

Cramped environment A general criticism made by the participants was that the public hospital environment is packed and busy. Not only are the wards fully occupied, but the emergency department, lift lobby, and corridors of the wards are filled with patients in beds. There were occasions when the hospitals ran out of beds and the patients could stay only on stretchers during their hospitalization. Participants who work in a hospital setting used the term “battlefield” to describe the contemporary local hospital environment. Some said this problem had affected the palliative care services because some palliative care beds were situated in acute wards. System and processes

Limited coverage Palliative and end-of-life care services have been expanded to non-cancer patients, including those with renal failure, chronic respiratory diseases, and long-term

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neurological diseases. However, their coverage of the non-cancer groups was much lower than for the cancer patients. Participants believed that the lower coverage was due to several reasons, such as a lack of understanding about the palliative care approach among both laypersons and healthcare providers in other specialties, limited manpower and limited resources. Poor accessibility Since its introduction into Hong Kong, palliative care has expanded its services through different delivery modes, in addition to inpatient services. However, its provision is mainly shouldered by the public hospitals. Participants both from lay and professional groups were upset with its limited services. The palliative care beds are often fully occupied. Knowing the extended waiting period, one medical doctor queried that the existing number of beds was estimated based merely on the prevalence of terminal cancer a few decades ago. Several carers recalled that their now-deceased relatives could not be admitted to palliative care wards after referral until their last few days of life. Although outreach home care services are available, they are limited to office hours and weekdays only. Some patients indeed hated staying in hospital, but there was no alternative when they and their family members could no longer manage the patient’s symptoms at home. Some participants have tried to provide a palliative care service in the private sector, but because of its limited market value this has not been successful. They believe that the private sectors are more interested in curative modalities for profit-making. Incongruent opinions Some participants asserted that the hierarchical structure and power imbalances in the healthcare team or between teams also affected accessibility to palliative care services. They were sometimes hesitant to discuss with patients their future care or to refer patients to palliative care services if the team has incongruent opinions on the goal of care. The lack of team consensus on treatment modalities sometimes also resulted in contradictory advices that confuse the patients and family members. Several participants stated that they had the experiences of receiving different medical advices and thus they did not know which to follow. Inconsistent practices Apart from differences in the experts’ opinions, participants noticed that the health-care services provided in different hospitals also differed. At present, only some hospitals within the same geographical region had developed cluster-based palliative care services, otherwise palliative care was bound by specialty and

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hospital. Some of the participants joked that the kind of care offered to the patient depended on which hospital he or she was being admitted to. Some participants had the experience of helping friends or relatives to seek palliative care service because it was not available in the hospital they were staying at. Fragmentation of care Many participants pointed out that the current services are limited within individual organizations. Communication between different healthcare sectors or even between public hospitals is absent. The healthcare providers in the primary care or community care services find it difficult to communicate their observations of the patient’s needs and conditions to the hospital team, and vice versa. One carer stated her frustration that her mother had to undergo repetitive assessments and investigations after being referred to another hospital. Delayed referral Although there is a referral system in place, the timing of referral largely depended on the decisions of the parent team. The referral sometimes was delayed to the last stage of the illness trajectory if the parent team had misunderstood the meaning of palliative care. It appears that patients and palliative care teams were in a passive role. In recent years, some palliative care teams have been more active in achieving the consultative role through outreaching and collaborating with different medical teams and sectors, but this has yet been developed as a territory-wide practice. Rigid operations The rigidity in management and logistics in the general wards increased the participants’ irritation. Several carers had experienced being prohibited by ward staff from visiting their dying relatives out of visiting hours or of not having time to mourn for their loved ones at the bedside after their death. Likewise, the ambulance men were rigid in following the resuscitation procedures and the police were rigid in investigating the patient’s death outside hospital, regardless of the patient’s conditions and wishes. One participant stated that the police interrogation method made them feel humiliated. Unpreparedness for bad news Some carers were emotionally unprepared to receive bad news, particularly when members of the medical team explained the diagnosis and treatment plan hurriedly. Generally, they had never thought of end-of-life care issues or that the patient’s condition may deteriorate. So, they felt overwhelmed by the explanation by the medical doctor. They did not know how to organize their ideas and how to ask

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questions at that particular moment. One participant recalled that she felt dejected when the doctor teased her about what he considered her silly questions. Some participants also found difficulty in meeting the doctor-in-charge to clarify the patient’s condition afterwards. One stated her experiences of calling friends and relatives to ask their opinions when her husband was terminally ill. On the contrary, some doctors were surprised that the carers have little knowledge about the patient’s condition and also little awareness about the patient’s worsening trend. Family influence From the stories stated by the participants, it can be noted that the family often takes an active role in medical decisions in the local context. Some participants in the patient group relinquished their right to self-determination because they believed that the family members would be more competent to make the best decisions for them. Some participants were afraid of sharing their thoughts about future care with family members to avoid tension. On the other hand, some participants said that they felt rejected by other members of their family when they shared their thoughts. Their family members urged them not to think about the negative side and said that they would know what to do when the time comes. From the clinical experiences of the participants in the health professional group, it was unusual that the family had never thought of the matters when the patient became critically ill and when they had to eventually make a decision for the patient based on their own values. The decision-making process may be further complicated by family dynamics, familial relationships, or the patriarchal culture. For example, one participant, as a family carer, overrode the end-of-life care decision for comfort care previously made by the patient. She insisted on trying every means to save the patient’s life because she believed that the patient’s decision was influenced by depressive mood and medication. Inattention to dignity Palliative and end-of-life care is targeted both to patients and their family members. Some hospitals have redecorated their corridors to the mortuary to make them comfortable for the bereaved family members, but the quality of care is more than the physical environment. One carer’s father died from a sudden and massive stroke. She was shocked about his unexpected death, and even more upset at how her father was treated immediately after his death. The personal care assistants cleaned his body and sent him to the mortuary in a hurried manner. She and her family members did not have the time to mourn for her father at the bedside. Other participants also mentioned that the process of transporting patients to the mortuary in some public hospitals was dehumanizing. The trolley for carrying the

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deceased patients was made of stainless steel and thus it looks impersonal. Also, the workers sometimes were rude when placing the dead bodies onto the trolley leading to a bombardment with noise. The location of the mortuary sometimes also made the bereaved family members uncomfortable, for example if it is on a lower ground level, or next to laundry, or next to garbage dump. Human resources Lack of knowledge about palliative care Some participants noticed that the awareness or knowledge about the concept of palliative care or end-of-life care issues among their colleagues in the healthcare field were not better than that of laypersons. For example, one healthcare team argued whether forgoing mechanical ventilation in a patient with advanced motor neurone disease, who had clearly refused it in advance, was equivalent to euthanasia. Participants noted that the level of awareness was particularly low in more specific units or specialties, such as surgical departments, intensive care units, paediatric units, and emergency departments, even though patients with serious illness also accounted for a high proportion of their clients. Lack of recognition in the field Manpower shortage remained unresolved in the healthcare system generally, but this problem was even worse in palliative care. Many participants in the healthcare field noted that only a small group of fresh graduates and junior colleagues are interested in this field. The majority were keen on developing careers in areas involving advanced technologies and complicated medical procedures. Palliative care was less appealing for several reasons. Firstly, the young health professionals are less interested in it due to its limited market value in the private sector. Secondly, the career pathway, particularly for allied health professionals, in the field of palliative care was unclear. Thirdly, palliative care was often trivialized in terms of skills and knowledge that undermined its professionalism. It may be simply understood as pain and symptom management which was familiar to every health professional. Lack of clarity in roles and responsibilities Some participants also noticed that some patients have palliative care needs, but they also felt powerless about what they could do. For example, the nurses or social workers knew that the patients were aware of their poor prognosis but they lacked the confidence to discuss end-of-life care if the medical team had not initiated the discussion. Some healthcare providers in the community settings also

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procrastinated if end-of-life planning had not been brought to attention during the hospitalization period.

5.3 Opportunities

Leaders support In recent years, many government officials and administrators in the top management levels of the public sector openly stated their support for the development of end-of-life care. While some participants were sceptical that palliative and end-of-life care had been considered as a means of relieving the healthcare utilization and costs, many appreciated that it is nevertheless a step forward that heightens the awareness towards the quality of care for patients with serious illness. Some participants also believed that the hospital accreditation system, which was recently introduced from Australia to Hong Kong, is a new opportunity for service development because the provision of end-of-life care is one of the indicators in the quality appraisal.

Changes in demographic and morbidity patterns With improvement in medical services, the life expectancy of people in Hong Kong has been much extended, but chronic progressive diseases are still also highly prevalent. The leading causes of deaths were dominated by malignant neoplasm, organ failure, senility, or frailty. Many participants viewed this as an opportunity to promote the concept of end-of-life care to a wider spectrum of healthcare services. Therefore, some health professional participants stated their experiences of interdepartmental collaboration to enhance end-of-life care between the palliative care team and other specialties, for example, oncology, obstetrics and gynaecology, respiratory, and geriatrics, and also in different settings, such as infirmary care and residential care homes for the elderly. They expected that competency in end-of-life care would become a prerequisite for all healthcare providers of different departments and in acute, subacute and community care settings. Highlighted in corporate direction Some participants appreciated that the Hospital Authority has recently formulated a strategic service framework to guide the development of palliative care because

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this may highlight the importance of palliative care in the healthcare system, although the framework is a corporate initiative that focused only on the service development within the organization. Moreover, some were pleased that the framework has identified the need to develop paediatric palliative care. This was underdeveloped locally and therefore they hoped that its being recognized in the framework would attract more attention, resources, and support to this area. Gaining mass media attention Participants noticed that palliative and end-of-life care has attracted increasing attention from the mass media in recent years. Some considered that it is an opportunity for improving public awareness, but some worried that it may also be a threat. If the people working in the mass media also have misunderstandings about these concepts, they may convey incorrect messages to the public. Previously, some journalists have confused forgoing treatment and advance directives with euthanasia in newspaper reports.

5.4 Threats

Curative-oriented approach The health-professional participants generally noted that the importance of palliative and end-of-life care had not previously been recognized by their organizations. They stated that much attention has been given to curative treatments which may usually be supported by top-notch medical devices and advanced technology. On the other hand, because the mortality rate is a major key performance indicator (KPI) of medical services, a patient’s death appears as a failure of the healthcare team and even of the hospital. A medical doctor stated that the discussion about mortality in monthly departmental meetings focused on what treatments have been attempted before a patient’s death, but not on the quality of end-of-life care for that person. Likewise, the mass media often compare the quality of care of various hospital based on the mortality rate reported. Heavy clinical workload Owing to the high patient volume, participants who were healthcare providers (i.e., in the health-professional group and frontline care staff group) found it difficult to balance between quality of care and work efficiency. On average, the doctors meet each patient briefly for several minutes only during outpatient clinic follow-up. The nurse-to-patient ratio in Hong Kong was high; for instance, a ward nurse generally has to take care of more than ten patients in a day shift and around three-fold to

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four-fold in a night shift. With such a heavy clinical workload, they could focus only on completing the clinical tasks and turn a blind eye to the psycho-socio-spiritual needs of patients and family members, even though they were aware of these. They worried that it would require too much time to handle their emotions and manage their concerns, and that these efforts would not be appreciated at the administrative levels. Moral distress among healthcare providers On the other hand, some of these participants challenged the meaning of these cares. They expressed frustrations concerning the quality of care because their busy work had numerous unsuccessful episodes of resuscitation and family complaints about unsatisfactory care. It was disheartening when they had to deliver life-sustaining treatments which they knew from clinical experience would be futile to patients with end-stage disease, just out of family wishes or for the sake of convenience. In face of these situations, while some participants said they avoided putting personal emotions into the matter, others stated their intention to leave the job because they could not see the meaning of what they were doing. Inadequate coverage in professional education Most of the participants in the health-professional groups had a limited recollection of the concept of palliative care being taught in their undergraduate education. Some knew that this component had been added or recommended to be added in the existing undergraduate curriculum for health professionals some years ago, but the component probably remains insignificant or limited to didactic learning. Therefore, some participants admitted that they lacked confidence in communication related to end-of-life care issues and handling the ensuing emotions, even though they recognized the need. On-the-job training on preference basis On-the-job training related to palliative and end-of-life care is now enrolled on a self-selective basis and so it attracted only those healthcare providers who were already interested in the topic. In other words, the training could not reach out to those who were not interested in the topic and found it irrelevant to their specialities or care settings. Also, due to the limited quotas, some participants learnt it through self-directed learning or attended courses or overseas exchange programmes at their own expense. Some participants who were allied health professionals frankly stated that they knew little about palliative and end-of-life care. They were interested in joining this study because they believe that their expertise was important in

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symptom management and psycho-social support for people with palliative care needs. However, there was inadequate professional training. To the best of their knowledge, there was so far only one commissioned training course specifically for allied health professionals offered by the Institute of Advanced Studies (IANS) in recent years. Lack of primary care The current palliative and end-of-life care is mainly concentrated in secondary and tertiary care, and there has been little attention to clarifying the roles and responsibilities of primary care providers in this area. The care for people with serious illnesses in RCHEs had been strengthened by VMO and CGAT through the collaboration between hospitals and care homes, but the care for those living at home remains underdeveloped. Some participants asked why the general practitioners (GPs) had not been mobilized to support the home care for patients with serious illnesses. Inadequate community and home care support Not only was primary care inadequate, but the support for care in the community and at home was inadequate also. Some family members were anxious when the patients were discharged home because they lacked care-giving skills training and support. A social worker said the family carers may not know the resources available for home care because these resources were scattered across different organizations. She always needed to help them with borrowing equipment, such as a wheelchair, or arranging home-care support, but the demand for services was quite large. The patient and family may not receive the support before the death occurs. Some family members said the bed and mattress specifically bought for their sick relatives were wasted after having been used several times only.

5.5 Barriers or challenges to the service development

Political

Lack of an overall policy framework Participants generally consider the development of palliative and end-of-life care services in the local community to be fragmented and limited. Many of them ascribed the underdeveloped service to the absence of a policy framework to direct the overall service development. Several participants who were experienced in this field described this as a bottleneck situation resulting in lose-lose results for the

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healthcare system, the healthcare providers, and the clients. They believed that developing a specific policy framework for palliative and end-of-life care can help to guide its development in a more structured and organized manner. However, it always appears that there are many other pressing social issues, for example, housing and education, and therefore the priority of palliative and end-of-life care is low on the public agenda.

Economic

Unstable financial support Since policies to recognize the importance of palliative and end-of-life care services are absent in the community, the government funding for this aspect has fluctuated. Participants noted that the percentage of GDP being injected into the local health expenditure was very limited when compared with that in other developed countries, of which the portion for palliative and end-of-life care is of a lower priority. Some participants recalled that the funding for this aspect was among the first to be suspended during an economic downturn. Similarly, the sustainability of various palliative and end-of-life care models in the community is one of the major concerns of the participants. They acknowledged that many initiatives have been launched by different organizations to provide palliative and end-of-life care in the community over these years, but the operations of these projects are mainly funded by charitable foundations or competitive funding schemes for several years only. Because these funding bodies avoid supporting similar projects, the organizations cannot continue those projects once the funding has ended, even if the services are beneficial for society. The one-off funding mode also affects the staff stability, especially in the last phase of project implementation.

Socio-cultural

Death-denial culture Almost all participants, regardless of their background, pointed out that more life and death education in Hong Kong is needed. Death is a cultural taboo. People generally avoid talking about it for fear that it would attract bad luck, and it is therefore considered impolite and intrusive to raise the topic for discussion. Such avoidance had even diffused into daily life. For example, the number “four” which has the same pronunciation as death is avoided in the block numbers on an estate or in the floor number of a building. Hence, some healthcare providers were

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hesitant to discuss end-of-life care wishes with patients or their family members as this may be viewed as bringing bad luck or depriving them of their sense of hope. The rapid advancement in medicine further contributes to the death-denial culture. Some patients were active in searching for information on various treatments for their conditions, such as target therapy, immunotherapy, transplantation, and also complementary and alternative therapies, as if there should be a cure for all conditions. Some participants in the professional group had been challenged by the patient or family members for their knowledge about various treatments. The death-denial culture is also described by a carer whose mother died in a palliative care ward. She recalled that a family member of another patient scolded her for crying loudly at the bedside. That woman criticized her for her uncontrolled behaviour and said that it would affect the sense of hope of the other patients in the same cubicle. She felt embarrassed but pondered why she could not express her sadness towards her lost mother. On the contrary, some patients and elderly people stated that they understood the limitations of medicine. To them, the dying process is more worrisome than death itself and so they wished to make an end-of-life care plan in advance. Rather, they found that it was their family members and the healthcare providers who felt uncomfortable with the discussion. They felt powerless not only because they could not find listeners, but also because they worried that they will have to undergo many invasive yet futile treatments in their last days of life. Myths about filial piety Some participants believed that the traditional belief of filial piety is also a reason that contributes to the death-denial culture. It was noted that many family members felt obliged not to give up but to try every means to maintain the patient’s life, regardless of the cost. There were family members who decided to let the patients try some innovative treatments although the results may not be promising. One participant stated that she brought her mother, who had an advanced stage of cancer, to a private hospital for treatment, even though she had to incur debt thereby, because the treatments offered by the public hospitals were not effective. For whatever reason, their motive was to offer the best they could to their loved ones. Strong belief in medical authority There is a strong belief in society that medical doctors are authoritative in treatment decisions. There is an old Chinese saying, “Medical doctors possess parents’

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heart.” So, people generally have trust in medical doctors not only because they have the knowledge to make decisions, but, more importantly, because they believe that they are able to make the best decision for the patient as when parents love their children. Some participants found it difficult to promote advance care planning because some patients and family carers as laypersons were over-reliant on medical advice and were not aware of any need to plan for future care. Furthermore, this belief might deprive the patients’ right to palliative care if the medical team had never introduced the concept during the course of the illness. Misunderstanding about the palliative care approach Some participants said when they first learnt the terms “palliative care” or “comfort care”, they thought that they equated with euthanasia or abandoning the patients. They imagined that a palliative care ward is a place where patients wait for death. One participant recalled that a doctor referred her family member to a palliative care service in another hospital. When she first visited that hospital, she was hesitant because the location was inconvenient. It was as if she was dumping her loved one in a far-distant place. Then, she was shocked by the hospital’s appearance because it looked dull, faded and old. Another participant shared the conversation with the taxi driver when she went to a hospital with palliative care services. It appeared that the driver had stigmatized the hospital as a place where patients “with no way to return” after they were admitted. Several patients and carers said they accepted the referral to palliative care services just because they have relatives who were health professionals who had helped to clarify the concept and their misunderstandings. There was also one participant who had refused the palliative care referral for her mother because she imagined that the atmosphere would be miserable. After the death of her mother, she searched for information about palliative care through the internet and books and was remorseful about her decision. She wished that she could have had more information about the services at the time of referral.

Technological

Inconvenient transportation Many participants observed that it was very difficult for patients with a serious illness to travel around. A non-emergency ambulance transfer service (NEATS) was arranged for some patients to attend outpatient clinics and day care centres, but the experience was unsatisfactory because the shuttle bus usually went around many different places when picking up different patients. When they returned home, they usually had to wait for a long time until everyone was ready to leave.

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Some family members tried to take a taxi in order to prevent patients experiencing fatigue, but the experience was not pleasant. These patients usually were wheelchair-bound and had impaired movement, but some taxi drivers were not compassionate and even rejected them or showed annoyance towards them. Due to such hindrance, some of the patients defaulted in their follow-up visits or attendance at day care centres. Unsupportive climate for research Some participants stated the challenges in conducting empirical research to evaluate the effects and impacts of palliative and end-of-life care services on patients and their family members in the local culture. The local service development was now mainly based on the literature and the overseas experience, but they questioned these care models and said that interventions may not be culturally appropriate for the local context. Unlike in other developed regions where there were specific research funding schemes, research fellows training, philanthropic foundation and research centres devoted to this field, participants had received comments and criticisms from donors and reviewers on the value of this kind of research. They supposed that these interventions would result in an obviously significant improvement in the patients’ outcomes. They suggested that these interventions could be rolled out as services directly rather than spending time and resources on research. Despite this, participants found that the difficulty in accessing the research subjects is more challenging. From the participants’ experience, although family rejection may decrease the participation rate, the rejection from organizations and ethics committees for conducting the research is the lethal cause of these incubated ideas. Often, family members who lack knowledge about palliative and end-of-life care wanted to protect the patients and not allow them to participate in the study. However, the difficulty of seeking approval for conducting the research is the major hindrance. The target population of research studies in this field tends to be patients who were seriously ill and may have become mentally incapacitated. Seeking approval for recruiting people who were mentally incapacitated to be research subjects was deemed impossible, since proxy informed consent from family members was not accepted. This means that it is hardly possible to conduct a prospective study in a rigorous manner to measure the effects of interventions on people who had palliative care needs but who are too mentally incapacitated to give informed consent to participate in the study; for example, people with advanced dementia. Likewise, the organizations and ethics committee were also conservative on this kind of research due to its sensitive nature, for example, initiating discussion about end-of-life care or spiritual concerns.

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Environmental

Unfavourable environment for dying in place While the hospital environment is cramped, some participants cautioned about the presumption that home would be a better place of care than the ward environment. In most cases, the patients’ homes were also crowded and were more poorly equipped than a hospital ward. They stated examples where the patients had to lie on the floor after discharge home or could not wash or bathe because of the limited space. Other difficulties identified by the participants included the lack of equipment or facilities for taking care of the patients and the difficulty of transporting the dead body in a small lift in a residential building. Furthermore, the legal requirements and logistic arrangements for dying at home or in residential care homes challenged its practicality. The issues included: whether the patient had been diagnosed as terminally ill and been seen by a doctor in the last 14 days of life; whether there is a medical doctor on site to certify death; whether the family members were familiar with the administrative procedures of obtaining a death certificate; and whether a funeral company had been contacted to move the dead person to the funeral parlour directly rather than to the public mortuary. The experience stated by a participant who helped to facilitate dying at home uncovered that it was luxurious and as a privilege in the local context. Family members were also worried that allowing patients to die at home may be unwelcome to neighbours because this may be considered as bad luck and also affect the property price. Hence, the participants found it premature to promote dying in place in the local community.

Legal

Concern about liability and accountability Many participants in the professional group were uncertain whether they might be accused of negligence or malpractice if they honoured the patients’ or carers’ wishes of forgoing life-sustaining treatment. This is particularly challenging when prognostication is hard to determine, the risk–benefit balance of treatment is open to interpretation, or when the patients and their family members have different treatment preferences. Hence, they made an ardent argument for revisiting various laws and regulations that hinder the development of palliative and end-of-life care in Hong Kong.

- The powers of attorney and guardians The Powers of Attorney Ordinance (Cap. 31) allow the attorney to manage financial matters only if the donor becomes mentally incapacitated. Although the Law Reform Committee recommended the expansion of the

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power of attorney to personal care after consultation, the decisions related to life-sustaining treatments were excluded from its scope (LRC, 2012). In other words, a patient could not designate a person to legally represent him or her to make proxy decisions on end-of-life care. On the other hand, the legal power of guardians was limited to providing consent to medical and dental treatment in the interests of the mentally incapacitated person concerned, according to the Part IVC of the Mental Health Ordinance (Cap. 136). The guardian cannot refuse the treatment on the patient’s behalf if the medical team considered it to be in the patient’s best interests.

At present, the medical team often consults family members on end-of-life care matters for the patient, but many participants believed that these decisions may not align with the patient’s preference in the absence of open and thorough discussions with the patient in advance. Moreover, some participants were confused with the practice of consulting family members on treatment decision for patients because the HA guidelines stated clearly that these are medical decisions based on the patient’s best interests and that the family members indeed have no legal right to be consulted. There were occasions that the family members overridden the patients’ care wishes or denied their prior decisions, resulting in disputes. The participants pointed out that the issue that treatment decision-making for the end of life is sometimes value-laden. The goal of care in the last phase of life may not merely be for life sustenance and so whether it is in the patient’s best interests would be subject to individual interpretation.

- The duties of ambulancemen The ambulance services are under the Fire Services Department and abide by the Ordinance (Cap. 95 – the Ambulance Command). Participants who were working as ambulance men generally said that they have limited knowledge about palliative and end-of-life services. While some had never heard of advance directives, some were worried that the treatment refusal order in the advance directives is contradictory to their duties.

- The aftermath of dying in place

The Coroners’ Ordinance (Cap. 504) requires deaths which occur outside hospital or nursing home settings to be reported to the Coroner unless the deceased had been diagnosed with a terminal illness or had been attended by a medical doctor within 14 days before his or her death. However, the term “terminally ill” does not cover advanced or progressive diseases. Participants were uncertain about the idea of dying in place even if they

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knew it was the patient’s wish because these reportable deaths are subject to police investigation, autopsy and post-mortem examination, and the dead bodies had to be kept in a public mortuary for a period of time.

Likewise, deaths in care and attention homes, a type of RCHE, are reportable to the Coroner, according to the Residential Care Homes Ordinance (Cap. 459). The care home staff stated that this is one of the barriers to integrating end-of-life care services in the care home service. They were that the process of police investigation at the RCHE and removal of dead residents may make other residents, relatives or neighbourhood be sceptical about the quality of care.

Uncertainty about advance directives There was no specific legislation on the advance directive in Hong Kong. Some participants said such legislation may not help because experience in overseas countries suggested that it cannot help to promote its awareness and completion. Nevertheless, some participants urged the need to have a specific law to protect the health professionals who follow the document, as well as to protect the patient’s right to self-determination in treatment decision-making.

Some participants shared their unsuccessful experience of seeking a medical doctor to witness their process of signing an advance directive. They wished to complete advance directives because some of them were alone and wanted to document their care wishes before their condition became critical, or they wanted to relieve their family members from the decisional conflict. However, the doctors in the outpatient clinics did not help because they said they were not familiar with the concept or they were too busy. Also, there were doctors telling them not to bother about this at this early stage as advance directives were for people who were in a critical condition. They wondered whether they could ask a private doctor to be the witness, but the major concern is that such a process was costly.

On the other hand, some participants challenged whether the advance directive forms usually used in the current practice would be widely honoured across different settings. Since the forms were developed by the Hospital Authority, an independent organization, they may be considered by other government departments or organizations as being internal records and for reference within public hospitals only. Participants also suggest the importance of indicating the presence of advance directives in the electronic medical records to facilitate communication between different organizations.

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6 POLICY IMPLICATIONS AND RECOMMENDATIONS

The findings of this study uncovered the fact that the development of a palliative and end-of-life care service is not only about the service itself but about how the whole of society affects its development. Paradigm shift

The introduction of palliative care services to Hong Kong four decades ago constituted a revolution in the territory’s healthcare system. Since then, palliative care has gradually evolved to serve a wider population across care settings. The care services would be shifted from a specialist approach to a public health approach in which people with palliative care needs and their family members are entitled to appropriate, coordinated and holistic care. This paradigm shift involves various issues at the levels of socio-cultural systems, health systems, organizations, and individuals. Our recommendations therefore cover social, legal, and economic strategies that support the continuing development of palliative care services through the collaboration of government, public and private sectors and training institutions. 6.1 Key principles for service development

Five principles emerged from the participants’ expectations towards the local development of palliative and end-of-life care:

i. Fair access Access to palliative and end-of-life care services is a basic human right, regardless of the diagnosis and place of care. To this end, all health care providers should be equipped with the necessary knowledge and skills related to palliative and end-of-life care services. The general public should also be empowered with the relevant health literacy, which is defined as the ability to obtain, understand and use information and services for making health-related decisions, in relation to palliative and end-of-life care.

ii. Compassionate care

Death and dying are a natural and unavoidable part of life. All human beings must eventually confront the reality of both their own deaths and the deaths of others whom they hold dear. The experience of the dying process or taking care of significant others is not only influenced by the care services in the health-care system, but by numerous other matters. Given that the death of

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a person will have life-long impacts on the bereaved, it is highly important to cultivate a compassionate culture in the whole of society to support people with serious illness and the people surrounding them.

iii. Early integration

Palliative care should be provided on a need basis, regardless of the diagnosis and prognosis. It can be integrated with various specialties and provided in parallel with curative treatments as well as rehabilitation services to optimize the quality of life of people with progressive conditions during the course of their illness.

iv. Shared decision-making

Likewise, advance care planning which enables patients to communicate their care wishes to their family members and healthcare team should be initiated early in the course of illness. Medical decisions are often considered to be made collectively by the family in the local cultural context. Given the difficulty in making decisions concerning end-of-life care, starting the conversation early allows time for patients to learn the illness trajectory and different treatment options, reflecting on personal values regarding end-of-life care, and clarifying their own care wishes with significant others in a less stressful atmosphere.

v. Continuity of care

The coordination of care between different healthcare teams, care settings and organizations should be strengthened to facilitate the continuity of care along the illness trajectory. The coordination and communication are not limited to health-care organizations but also involve all other relevant parties, including ambulance services, long-term care facilities, social welfare departments, and funeral services.

6.2 Recommendations Based on the five principles which emerged from the findings, ten recommendations about the key elements to be included in the future service developments have been formulated. Recommendation 1: Revisiting the goal of medicine In today’s prevailing pluralist culture, the goal of medicine may not focus only on life preservation, but also on dignity and comfort. With the shift from a pathology-based biomedical model to a holistic care model, health professionals may not

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necessarily be regarded as being in an authoritative position to make medical decisions for patients, particularly in the face of complex health conditions and diverse needs. Person-centred care should be advocated to honour individual preferences for healthcare, in which the health professionals and patients and family members are in a partnership relationship to plan for the care. Recommendation 2: Ensuring health equity in the access to palliative and end-of-life care The provision of palliative and end-of-life care is regarded as an ethical practice that should be widely available and accessible for the health of the population. It is imperative for healthcare providers to identify palliative care needs in a timely manner and to introduce the services early to address the needs which emerge during the course of an illness, parallel with curative treatments and rehabilitation services. Recommendation 3: Advocating for leadership to guide the policy framework development Since the paradigm shift involves a wide range of issues, from organizational to societal levels, a structured and comprehensive government-led policy framework to guide the overall service development and promotion and to define the key milestones is urgently need. This also facilitates policymakers to clarify their mission and vision in the healthcare services for the entire population’s health.

Recommendation 4: Addressing the legal barriers to the development of palliative and end-of-life care A number of laws and guidelines need to be revisited and revised because they have been identified as legal barriers to the further development of end-of-life care practices in the community care settings. The existing legal points of view seem to convey a message that deaths outside hospital settings were prohibited and susceptible to trial. In addition, specific legislation about advance directive may safeguard the patient’s right to self-determination in end-of-life care and relieve health professionals from the fear of being accused of negligence. Recommendation 5: Maintaining adequate and continuous funding in the provision of quality palliative and end-of-life care Recurrent government funding is needed to support and sustain the service and its quality. The funding for the existing services is limited and subject to change depending on society’s economic development. The development of a policy framework for palliative and end-of-life care will signify the continuous support for service in terms of healthcare spending, manpower and resources.

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Recommendation 6: Building professional capacity in the service provision Knowledge and skills related to palliative and end-of-life care are the core competencies of every healthcare provider, regardless of the care settings and specialties. The capabilities concerned are all-rounded and not merely about the clinical skills. Communication skills for explaining the care options and exploring individual concerns are equally important. Hence, training in this regard should be provided at all levels, starting from pre-licensure, to achieve a general public health approach. Moreover, the format of training should include experiential learning and reflection to facilitate in-depth and mutual understanding. Recommendation 7: Increasing public awareness and knowledge about palliative and end-of-life care Life and death education for the public is an important foundation for promoting the concept of palliative and end-of-life care and for cultivating a compassionate culture in the community. This would empower people to make health-related decisions in alignment with individual values and preferences, inform the surrounding people about the importance of respecting their care wishes, and prepare the general public with the right attitude about the process of dying and death. Recommendation 8: Integrating the palliative care approach into different specialties and care settings The findings underscored the fact that palliative and end-of-life care is a broader concept that should be integrated into the care given by every ward or unit for adults as well as paediatric patients. The shared care model proposed by the HA is a solution to foster collaboration between palliative care specialists and generalists. This model can help to clarify the roles and responsibilities of different health-care providers. At the social policy level, the shared care model should be expanded to cross-sectoral collaboration and public–private partnership to further facilitate the continuity of care across primary, secondary and tertiary care. Recommendation 9: Fostering interprofessional partnerships Following the previous recommendations, interprofessional partnerships are a key to its successful implementation. Medical–social collaboration which has been highlighted in recent healthcare policy is an example that facilitates the coordination of care between hospital settings and community care settings. To achieve the aforementioned recommendations, interprofessional education between health-care disciplines and with other disciplines, such as law, social sciences and engineering, is essential for building these partnerships.

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Recommendation 10: Developing evidence to inform the practice Last but not least, research studies to examine the effects and impacts of various interventions and policy strategies are vital for informing culturally specific and cost-effective practices. The evidence will help to enhance the quality of the practices and standards, and maintain them at an internationally recognized level.

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PUBLIC DISSEMINATION

Chan, H. Y. L., Lee, D.T.F., Yi, H., & Woo, J. (2017). How to Improve Our Palliative Care Services? Voices of Different Stakeholders. Presented in the 12th Asia Pacific Hospice Conference, Singapore. Jul 2017.

Published in the Hong Kong Economic Journal on 7 December 2017 Retrieved from http://www.nur.cuhk.edu.hk/en/about-us/news/lang_en/20171207-hkej (see Appendix B)

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Appendix A. Interview Guides

For Professionals

1. / Can you share the strengths of your organization/profession when you planned for or provided, or seek support for palliative and end-of-life care in your work / practice?

2. /

Can you also share the weakness of your organization/profession in this regard?

3. / ? Can you identify opportunities and threats that may facilitate or hinder the care development in your work / practice?

4. /

Can you share any practices / care services about palliative and end-of-life care in other countries/ regions that we can learn?

5.

From your point of view, how can other organizations or government departments collaborate to support the care service development in the local society?

6. ,

From your point of view, how the climate (including political, legal, regulatory, economic and technological factors) in the local society affect the care service or development?

7. ?

Please share your views or experience how socio-cultural factors may have affected the care.

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For care recipients or lay persons

1.

Please share your views and experience with the palliative and end-of-life care.

2. How well has the care address your needs or concerns?

3. What are your expectations towards the care?

4. How the care can be improved in order to better address your needs and concerns?

5. How the socio-cultural factors have affected your experience or views towards the care?

6. What other external factors may have affected your experience or views towards the care?

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Appendix B. Sharing of the study findings in a local newspaper (Hong Kong Economic Journal dated 7 December 2017)

公共政策研究資助計劃 - policy innovation and co-ordination officepdf)/2016... · 2018. 5....

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