Nursing Manuscript
Dignified Palliative Long-Term Care: An Interpretive Systemic Framework of End-of-Life Integrated Care Pathway for Terminally Ill Chinese Older Adults
American Journal of Hospice & Palliative Medicine® 1-9 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114565789 ajhpm.sagepub.com
Andy Hau Yan Ho, PhD, MFT, FT1,2,3, James K. H. Luk, FHKCP, FHKAM4, Felix H. W. Chan, FHKCP, FHKAM4, Wing Chun Ng, MN5, Catherine K. K. Kwok, BSW6, Joseph H. L. Yuen, MSS6, Michelle Y. J. Tam, MSc3, Wing W. S. Kan, MSW2, and Cecilia L. W. Chan, PhD3
Abstract Purpose: To critically examine the system dynamics necessary for successfully implementing a novel end-of-life integrated care pathway (EoL-ICP) program in promoting dignity and quality of life among terminally-ill Chinese nursing home residents. Methods: Thirty stakeholders were recruited to participate in 4 interpretive-systemic focus groups. Results: Framework analysis revealed 10 themes, organized into 3 categories, namely, (1) Regulatory Empowerment (interdisciplinary teamwork, resource allocation, culture building, collaborative policy making), (2) Family-Centered Care (continuity of care, family care conference, partnership in care), and (3) Collective Compassion (devotion in care, empathic understanding, compassionate actions). Conclusions: These findings highlight the importance of organizational structure, social discourse, and shared meaning in the provision of EoL-ICP in Chinese societies, underscoring the significant triangulation between political, cultural, and spiritual contexts embodied in the experience of dignity. Keywords death and dying, dignity, long-term care, transitional models, qualitative methods
Introduction By year 2050, 22% of the world’s population will be older than 60 years.1 Such dramatic rise in the number of older people will inevitably translate into much greater demands for long-term care services, as their ability to live independently will gradually diminish with increasing health deteriorations and disabilities. Although the ideals of ‘‘aging in place’’ facilitated through enhanced community and home care services are widely promoted and advocated through old-age policies around the globe, nursing homes (NHs) still play a vital role in meeting the supportive care needs of older adults, especially those who are weak and terminally ill. The vast significance of NH in caring of the frail and dying is reflected by the relatively high institutionalized rate worldwide, where Hong Kong ranked top with over 6.8% of its elderly population dependent on residential care, when compared to the other developed countries such as the United Kingdom at 4.2%, Australia at 4.4%, and the United States at 3.9%.2 Hong Kong is also facing the unprecedented challenge of rapid population aging, whereby the number of persons older than 65 years has surged over 40% in the past 2 decades and is expected
to reach 2.58 million within the next 30 years to account for 30% of its total population.3 These drastic demographic changes reflect an imminent and continuous proliferation of supportive and palliative care needs among the aged. Not surprisingly, increasing attention has been directed toward developing and enhancing end-of-life (EoL) care provisions in NHs for
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Division of Psychology, School of Humanities and Social Sciences, Nangyang Technological University, Singapore 2 Sau Po Centre on Ageing, The University of Hong Kong, Hong Kong 3 Centre on Behavioral Health, The University of Hong Kong, Hong Kong 4 Tung Wah Group of Hospitals, Fung Yiu King Hospital, Hong Kong 5 Community Care Services, Hong Kong West Cluster, Hospital Authority, Hong Kong 6 Tung Wah Group of Hospitals, Jockey Club Care and Attention Home, Hong Kong Corresponding Author: Andy Hau Yan Ho, PhD, MFT, FT, Division of Psychology, School of Humanities and Social Sciences, Nangyang Technological University, 14 Nanyang Drive, HSS-04-03, Singapore 637332. Email: [email protected]
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2 promoting dignity and quality of life among terminally-ill older adults.4,5 End-of-life integrated care pathway (EoL-ICP) is considered the gold standard for quality and holistic care for those facing mortality in most Western societies including the United Kingdom, Australia, and the United States.6-8 Founded upon a whole-system, person-centered approach to care that emphasizes interagency collaboration, EoL-ICP enables and empowers hospitals, long-term care facilities, and social service institutions to develop and implement a seamless spectrum of well-planned, coordinated, and monitored care for older patients with terminal illnesses and their families.9 Combining a continuum of intervention elements that include palliative care registration, advanced care planning and review, interdisciplinary care coordination and delivery, care in the last days of life, family support as well as bereavement care, the ultimate goal of EoL-ICP is to provide unceasing services while being responsive to individual and family needs, wishes, autonomy, and dignity.10 Although repeated studies in the West have shown that EoL-ICP is effective for improving patients’ quality of life, process of care, clinical documentation and assessment as well as bereavement levels of relatives,11-13 much less is known about its applicability and efficiency in the Chinese context. In a step toward the highest provisional standards of palliative long-term care, the Hong Kong West Community Geriatric Assessment Team together with the Tung Wah Group of Hospitals Jockey Club Care and Attention Home had piloted a novel EoL-ICP program in 2009. This first-of-its-kind program set out to provide palliative care for older NH residents with life-limiting illnesses and irreversible chronic diseases (ie advanced dementia, terminal cancer, end-stage heart disease, advanced chronic lung diseases with respiratory failure, and renal failure), to enable them to remain in a familiar environment during their last days of life and to facilitate a dignified and comfortable death. The program offered 2 pathways, namely, the Accident & Emergency (A&E) Pathway and the Hospital Pathway, both of which involved palliative care registration, advanced care planning, family carers support, and bereavement care. Elders who registered for the A&E Pathway receive care in the NH until the last moments of life; thereafter, they are transferred to the A&E department of the collaborating Queen Mary Hospital (an acute hospital) instead of being admitted to the chaos of an acute ward. Their advance care plans are strictly followed and a quiet environment is provided to allow them to die peacefully. Elders who registered for the Hospital Pathway go through an expedite pathway and are admitted to Fung Yiu King Hospital (a rehabilitation and convalescence hospital) for EoL care when they deteriorate instead of going to acute hospitals. A recent audit showed that the novel EoL-ICP program was effective in managing care coordination between NH and the collaborating hospitals, and had successfully facilitated a dignified and peaceful death for 10 residents who had undergone the A&E pathway while providing comfort and respite for their surviving family members.14 The aim of this study is to critically examine the underpinnings of palliative long-term care
provision from the perspectives of multi-stakeholders involved in the program, as well as, to identify the interplaying dynamics, mechanisms, and systemic factors that underscore the implementation practice of EoL-ICP in the Chinese context of Hong Kong.
Methods Study Design This pilot study adopted a qualitative design to examine the provision of dignified palliative care in long-term care facilities in Hong Kong. Ethics approval was obtained through the Institutional Review Board of the Hospital Authority Hong Kong West Cluster. In order to obtain a holistic understanding of the intricacies and dynamics of the novel EoL-ICP program, we adopted the interpretive-systemic framework (IFS) to guide our process of inquiry. This involved eliciting the views and perspectives of all stakeholders, including family caregivers, health care professionals, and policy makers who had played critical roles in and were significantly affected by the design, implementation, and care outcomes of the EoL-ICP program. The goal for adopting such multi-level framework of inquiry is to allow a systemic comprehension of the EoL-ICP program through the interpretive lens of different stakeholders that belong to the diverse contextual systems of palliative care and long-term care.15,16 While the IFS is an appropriate approach for studying organizational structure,17 it also facilitates the examination of interrelationships and boundaries between specific groups of stakeholders that affect the experience and manifestation of dignity and quality of life in EoL caregiving.
Recruitment and Sampling Guided by the ISF, participants representing 4 specific stakeholder groups involved in the novel EoL-ICP program were recruited to participate in the study. Specifically, 9 Medical Professionals, 9 Management Administrators, 6 NH Staffs, and 6 primary Family Caregivers of the old-age NH residents were recruited through purposive sampling (N ¼ 30). The inclusion criteria included those older than 18 years who have been involved in the EoL-ICP program for at least 1 year and have the ability to communicate in Chinese as well as to provide informed consent.
Interpretive-Systemic Focus Groups Independent focus groups were conducted with the 4 specific groups of stakeholders to collect rich experiential narratives and multiple interpretations on the novel EoL-ICP program. Based on the systemic inquiry guideline which emphasizes the 3 a priori of interrelationships, common perspectives, and decision-making processes for understanding the intertwined dynamics of a phenomenon,18 participants were asked to comment on 5 major areas. These include (1) their roles and experiences with the EoL-ICP program; (2) their interaction and relationships with the rest of the care system; (3) factors that
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enhance or hinder their experiences; (4) support and resources they need and they have; and (5) ways that may facilitate decision making and program implementation. Each focus group took approximately 120 minutes to complete, they were recorded, transcribed verbatim, and translated from Chinese into English by a professional translator. All focus groups took place between October 2011 and April 2012.
Table 1. Characteristics of Key Stakeholders.a Stakeholder groups
N
Family caregivers
6 3 females Primary family carers of NH 3 males residents 6 5 females 3 social workers 1 male 2 personal care workers 1 nursing home supervisor 9 5 females 4 geriatric nurses 4 males 3 doctors 2 accident and emergency nurses 9 5 females 3 nursing home superintendents 4 males 2 hospital managers 1 hospital chief executive 1 hospital cluster chief 1 government official 1 health professor
Nursing home staffs
Medical professionals
Data Analysis Framework analysis with both deductive and inductive approaches were adopted to analyze the data for generating important factors and themes that illuminate the successful implementation of EoL-ICP. Framework analysis is specifically developed in the context of applied policy research, one that has specific questions, a predesigned sample and a priori issue, and aims to meet specific information needs and provide outcomes or recommendations.19 The NVivo software assisted in coding, cross-referencing, storing, and retrieval of data. The particular process of exploring experimental narratives involved several steps of coding and data reduction. First, multiple readings and line-by-line coding were carried out by 3 members of the research team; written summaries and codes of the system dynamics that led to effective or ineffective implementation of the novel EoL-ICP program were created using the 3 a priori of interrelationships, common perspectives, and decision-making processes. Second, axial coding was conducted to develop and refine possible categories of responses; text files containing illustrative and descriptive quotes supplementing the emergent themes and subthemes were also created. Third, 3 members of the research team individually reviewed and defined the emergent themes and presented to one another for confirmation; once consensus was reached, operational definitions were created. Finally, relationships between categories, themes, and subthemes were proposed and mapped with supporting quotes from transcripts. Distribution of theme occurrences and frequency counts were also tabulated to provide further support of our interpretive results. To address issues of rigor and trustworthiness, emergent themes were constantly compared and contrasted within and across groups during regular meetings, while the final theme categorization and definitions were agreed upon by all members of the research team.
Findings Table 1 presents the background information of all stakeholders. Our analysis reveals 10 themes that elucidate the systemic factors required for the successful implementation of EoL-ICP in the Chinese context of Hong Kong. These themes overlap across all 4 groups of stakeholders, reflecting the important roles that organizational structure, social discourse, and shared meaning play in the effective provision and delivery of dignified palliative care in long-term care facilities. These 10 themes are further organized into the 3 categories of (1) Regulatory Empowerment, (2) Family-Centered Care,
Management administrators
Gender
Roles
Abbreviation: NH, nursing home. a N ¼ 30.
and (3) Collective Compassion. Each of these categories is considered in turn and supported by illustrative quotes from all stakeholder groups.
Regulatory Empowerment The first major theme category that delineates the system dynamics for implementing EoL-ICP is Regulatory Empowerment, which encompasses 4 subthemes relevant to the decisionmaking processes among all stakeholders groups. The first subtheme, Interdisciplinary Teamwork, includes the standardization of care procedures through effective communication between care professionals as well as enhanced care management coordination across all involved agencies to ensure highquality care and avoid unnecessary treatments for residents. In fact, standardizing procedures between all care departments was seen as one of the most critical aspects of the interdisciplinary approach, and in order to facilitate standardization, effective communication between care personnel was deemed indispensable. Patients suffering from terminal illness are not just dealing with one symptom but multiple symptoms . . . The current care structure requires them to visit different hospital departments for different types of treatment . . . not only do care procedures varies greatly, they are often intrusive and time-consuming, therefore the experience of care can be horrifying to terminal patients and their families . . . we need to standardize care procedures between different departments so that people can feel more at peace and dignified at the end-of-life. (Male, management administrator) We need to strengthen the system of communication between different care departments including the RCHE, the hospital as well as ambulance services, so that when a patient has registered for the EoL-ICP, every care personnel involved knows about it and can take
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4 appropriate actions for best possible care rather than introducing unnecessary medical procedures. (Female, medical professional)
sustain the provision of palliative care in NHs was also expressed by numerous stakeholders:
The second subtheme, Resource Allocation, involves infrastructure integration between NHs and hospitals so as to enhance medical accessibility among residents, as well as, the need to allocate more funding to sustain a consistent team of personal care workers for ensuring quality and familiarity in care. In fact, infrastructure reintegration to improve privacy was one of the most important facets for the promotion of dignity through the EoL-ICP.
We are very fortunate to have full support from the president of our organization as well as all members of the director board . . . From as early as the planning phase, they have shown their leadership and commitment in providing us with adequate resources and manpower to launch the EoL care pathway program. (Male, medical professional)
One of the reasons why our EoL care pathway program has been successful is because we are collaborating with a nearby hospital; this reduces the time and space between nursing home care and medical care, making medical services much more accessible to our patients. (Male, medical professional) We try to create a better living environment for patients at their final phase of life, the goal is to provide them with a peaceful and dignified place to die . . . When a patient is reaching the end-of-life, we try our best to provide them with a single room with a consistent personal care team so that they can be with their family in a private and familiar context to say their final goodbyes and farewells, outside of the busy care environment in normal resident rooms. (Female, medical professional)
The third subtheme, Culture Building, includes the development of greater knowledge capital in palliative long-term care via life and death education and training for professional caregivers, residents, and their families. Moreover, many stakeholders believed that educative programs that emphasized both practical and emotional competence are critical for preparing clinicians and frontline staffs to work proficiently with families facing death and loss: Before we formally launched the EoL care pathway program, we provided a lot of life and death education and palliative care training for our staffs, especially frontline and personal care workers, to let them become more familiar and comfortable with death and dying . . . These courses focused on communication, clinical care, and emotional self-care so as to better prepare them work with dying residents. (Female, medical professional) We used to be afraid to talk about death because it is a big taboo in our culture, but I think we have now become advocates for good deaths . . . Sometimes we even educate our residents and families about death, letting them know that it is a natural process of lifeWe now feel much more competent in dealing with life and death situations. (Female, nursing home staff)
The final subtheme that defines regulatory empowerment is Collaborative Policy-Making, and it involves management support and leadership to guide the implementation of EoLICP as well as government-led policy initiatives that support the further development palliative long-term care. Furthermore, the need for evidence-based practice to inform and
I understand that everybody wants to provide high quality EoL care to patients and families, but we often do not know how to improve or move forward . . . We need to build up a strong data base to show the government that work that we are doing is useful and meaningful so that they can begin to develop an actual policy for palliative long-term-care, this is the only way to obtain more public support and funding. (Male, management administrator)
Family-Centered Care The second major theme category that defines the systemic factors required for the implementation of EoL-ICP is FamilyCentered Care, which includes 3 themes relevant to the common perspectives of different groups of stakeholders. The first subtheme, Continuity of Care, considers individual resident and his or her family as 1 unit of care, whereby tailored family-focused care planning with timely and recurrent assessment are conduced to guide the delivery of holistic care from as early as program intake and well into bereavement. Such continuity is imperative for achieving the best possible care outcomes, while preventing unnecessary, futile, and harmful treatments. From the very start of clinical admission, our entire team of doctors, nurses and social workers would go through the patient medical records together, identify his or her needs as well as those of the family, and coordinate care that best reflect their wishes . . . Such a procedure ensures that every worker involved knows that this is a family facing the end-of-life, and that the care they receive will be consistence across the board . . . Our team also coordinates with different hospital departments so that when patients require their attention, no unnecessary or futile treatments will be done. (Male, medical professional) I think the consistency of care a patient receives is very important . . . If my wife is not in the EoL care pathway programme, she will need to go to different hospital departments to get the care that she needs . . . All the traveling, the waiting, the need to go to A&E can be very texting on the patient as well as their families . . . It is wonderful that my wife can receive all the care that she needs with the same care team from the very beginning till her very last days. (Male, family caregivers)
The second subtheme, Family Conference, requires professional care team to meet and communicate accurate information with residents and families constructively and respectfully so as to empower them in making care decisions that best address their needs and concerns. Numerous stakeholders had further pointed out the necessity to consider the
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different points of views of every family member including those from involved extended families so as to derive at an effective consensus in EoL care planning and management (Quote 12). Family members play a critical role in the overall planning and delivery of EoL care, we involve them as much as we can in the care decision making process. We hold regular care conferences . . . with honest and open communication with the entire family . . . It requires time, respect and a lot of patience, but It is utmost important for them to reach a consensus because that would minimize a lot of arguments and grudges in the future. (Female, medical professional) When my wife got sick, my children and I all talked to her about how she would like to be cared for . . . She said she doesn’t want to suffer . . . we talked about it more as a family and worked it out with the nurses and doctors here . . . I think it was very important to her that all of us were involved in the process. (Male, family caregiver)
The third subtheme that defines family-centered care is Care Partnership, and it involves the encouragement of active participation of residents and families in every level of care, where their unique strengths are honored and recognized for enhancing the overall supportive care capacity between professional and family carers. Many stakeholders also maintained that a strong working alliance would ultimately provide the much-needed sense of support, encouragement, and dignity to residents and their families during life’s most fragile moments. We need to work with residents and their family to develop the best care plan possible together . . . We need to change the mindset and the culture where patients and families are only seen as care recipients, because they have their strengths too . . . We can build partnerships with them to enhance the overall experience of care at the end-of-life. (Male, management administrator) The doctors and nurses are very patience . . . they will explain to you everything that you need to know about the illness . . . I can ask them for clarifications on things that I don’t understand and I feel comfortable telling them about my wishes and concerns. I think this form of partnership is very important. It makes me feel dignified because they value my opinions and take the time to address my needs. (Male, family caregiver)
Collective Compassion The third major theme category that illuminates the system dynamics of EoL-ICP is Collective Compassion, which contains 3 themes that exemplifies the interrelationships between all groups of stakeholders. The first subtheme, Devotion in Care, entails all stakeholders’ passion and dedication in helping NH residents and their families to cope with the existential pain of mortality as well as to achieve dignity at the EoL. In fact, stakeholders from all 4 groups spoke of the paramount importance of such undivided commitment, love, and patience, which in turn gave significant meaning to their work.
I believe we are involved in this project because we all have a passion to help those facing death and dying . . . We are all busy with our work, but we are not doing this just this because it is our job, but because we truly want our patients to find peace and comfort, we want them to find meaning at the end, and seeing that they do, we too can find meaning in our work. (Female, nursing home staff) My mother used lived in a privately-ran nursing home. The care that they provided were horrible, I always saw bruises and cuts on my mother’s hands and arms . . . The nurses and personal care workers in this new home are so caring . . . Every one of them are filled with love and looked after my mother with great patience and devotion . . . I feel much more at peace and dignified now than compared to before. (Female, family caregiver)
The second subtheme, Empathic Understanding, requires stakeholders to comprehend and truly appreciate the existential needs and sufferings of residents and families confronted by the pain of morality so as to derive a genuine understanding on life and death. Many stakeholders also pointed out that this understanding had illuminating effect on their own lives, as they begin to see a common humanity linking all mortal beings. Empathy is really important in our line of work; I always share with my colleagues about the life changing effects of empathy . . . It is about entering the worlds of our patents and the family that we care for, seeing things from their perspectives . . . and somehow I being to see myself, and understanding how I want to be treated when I reach the end of my life. (Male, medical professional) I once had a patient who told me she was had excoriating pain and she could not sleep. The first thing that I thought of was giving her a higher dose of morphine . . . But then she said, can you stay with me for a while? So I stayed by her bedside, and gradually, she was able to fell asleep. I realized then, all she ever wanted was some company. This understanding was so valuable . . . this experience worth more money than anyone could ever give me. (Female, nursing home staff)
The third subtheme that defines collective compassion is Compassionate Action, and it necessitates all stakeholders to translate their shared empathic understanding into unifying actions to provide residents and families with compassionate care to foster greater sense of dignity and solace at life’s most precious and vulnerable moments. A resident once who told us that he wanted Jell-O, and although our kitchen do not make them, one of our staff actually got home and prepared a box of Jell-O and brought it to him to share with his roommates the next day . . . Simple things like these can be most meaningful to people who are dying.’’ (Female, nursing home staff) The most important thing is what we do . . . we need to act with compassion, we need to treasure the time that we get to spend with our residents, and be mindful of how we can best care for them so that they feel dignified at the end of life. (Female, nursing home staff)
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Table 2. Frequency of Themes and Subthemes Occurrences Among All Stakeholder Groups.
Interdisciplinary teamwork Resource allocation Knowledge Cultivation Collaborative policymaking Regulatory empowerment Continuity of care Family conference Care partnership Family-centered care Devotion in care Empathic understanding Compassionate action Collective compassion
Family caregivers (n ¼ 6)
RCHE staffs (n ¼ 6)
Medical professionals (n ¼ 9)
Management administrators (n ¼ 9)
6 5 3 2 16 13 10 8 31 22 19 18 59
8 7 12 9 36 13 8 9 30 20 17 16 53
10 11 11 13 45 17 9 4 30 23 16 12 51
7 16 8 19 50 6 4 5 15 22 18 16 56
Abbreviation: RCHE, Residential Care Home for the Elderly.
Contesting Priorities Between Different Stakeholders
Discussion
Although the 4 stakeholder groups shared similar interpretations over the significance of regulatory empowerment, family-centered care, and collective compassion for the provision of dignified care through EoL-ICP, there are clear contesting priorities. As shown in Table 2, management administrators were much more concerned over regulatory empowerment when compared to family caregivers and NH staffs. Particularly, the themes of collaborative policy making and resource allocation appeared most frequently in the discussions among management administrators and medical professionals, while the themes of interdisciplinary teamwork and knowledge cultivation appeared most frequently among NH staffs. Moreover, family-centered care was of similar importance to family caregivers, NH staffs, and medical professionals but less so to management administrators. This result is comprehensible, given the fact that managerial and professional staffs are often more involved in policy development and service, whereas families and frontline workers are more concerned over the clinical competence and quality of care. Despite the various competing priorities between different stakeholders, it is evident that all stakeholders shared a common language in understanding and elucidating EoL-ICP. This common language is that of compassion, the deep awareness and intrinsic understanding of the suffering of others. The frequency of occurrences within the themes of devotion in care, empathic understanding, and compassionate action are vastly similar across all 4 stakeholder groups. Evidently, this link of compassion can provide a connecting platform for all stakeholders to express their concerns openly with the understanding that they all have the common goals of providing dignified care to NH residents facing the EoL, to build trust and partnership, and ultimately, to find cooperation and resolutions that address the needs of all involved parties.
This is the first study to critically examine a novel EoL-ICP program in Hong Kong which effectively manages care transitions between NH and public hospitals to promote dignity and quality of life among older residents facing terminal illness. By adopting an ISF of inquiry that elicited experiential narratives and multiple interpretations from 30 participants of 4 key stakeholder groups involved in the program, 10 themes have emerged to elucidate the system dynamics that underpin the successful implementation of EoL-ICP in the Chinese context. These 10 themes are further organized into 3 major theme categories that reflect the sociopolitical, socialcultural, and sociospiritual contexts that are embodied in the experience of dignity at the EoL, highlighting the importance of organizational structure, social discourse, and shared meaning in the planning, provision, and delivery of EoLICP in the Chinese context (Figure 1). The first theme category of regulatory empowerment characterizes the essential sociopolitical context for implementing palliative care in residential care facilities, and defines the organizational structures required for effective decision making and interagency collaborations within an EoL-ICP program. Our findings reveal that interdisciplinary teamwork is fundamental for achieving optimal care coordination and care management, which can be enhanced through culture building among professional and informal caregivers with greater life and death education.20,21 Moreover, collaborative policy making is crucially needed, as management leadership and evidence-based programming can better guide resource allocation to improve infrastructure integration, staff training, and retention for enhancing NH residents’ quality of care and dignity at life’s final margin. All of these underline the imperative of a government-led policy initiative to support the sustainable development of palliative long-term care in Hong Kong.22,23 The second theme category of family-centered care accentuates the sociocultural context that facilitates dignified palliative
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Figure 1. An interpretive-system framework of end-of-life integrated care pathway (EoL-ICP) for Chinese older adults.
care in NHs and illustrates the shared needs and perspectives of Chinese families coping with the EoL. Many stakeholders in our study emphasized the pivotal roles that family conference and care partnership play in safeguarding the dignity of terminally ill residents and their families, as the requisite for sustaining continuity of care is nowhere more important than in the provision of palliative long-term care.9,10 These findings are consistent with previous literature demonstrating that honest and constructive communications between professional caregivers and family carers, those that encourage participation and collaboration, are indispensable in alleviating dying patients’ pain, anxiety, and depression, as well as reducing unnecessary treatments and clinician–family conflicts.24,25 These findings further underscore the vital significance of family discourse for advancing care quality and equity.26-28 The final theme category of collective compassion illuminates the sociospiritual context that cultivates dignified EoL
care practices and clarifies the interrelationships between all stakeholders of the EoL-ICP program. United through the empathic understanding of terminally ill residents’ existential pain of mortality, all stakeholders aspired to ease such pain through compassionate actions, as their devotion in care grew strong and unshakeable with increasing involvement. Evidently, compassion is a critical thread woven through the many layers of systemic boundaries, mobilizing all stakeholders through a collective consciousness of shared meaning, compelling them to work tirelessly to alleviate the suffering of the dying and the bereaved. These findings are in line with the mounting evidence suggesting that empathy and compassion are qualities that enhance clinicians’ level of energy and effectiveness in working with patients with life-limiting illnesses.29,30 Thus, they highlight the quintessence of medical humanities training in the sustainable development of palliative long-term care.31,32
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Conclusion Although the generalizability of this pilot study is limited by its qualitative nature, the findings generated have provided an important framework to guide the implementation and advancement of EoL-ICP in the Chinese context. Additional research is now required to further explore the issues identified in this article and specifically include policy-driven initiatives to expand interdisciplinary palliative care provisions in longterm care facilities, education and training initiatives to inculcate a culture of family-centered practices for promoting dignified EoL care, as well as, public health initiatives to cultivate collective compassion and self-understanding in experience of death, dying, and bereavement. Under the rubric of population aging, the success of care for those facing mortality no longer rests on a small group of specialists or even the medical profession alone, but the concerted efforts and vested interest in living and dying with dignity of every individual, groups, communities, and government bodies of our global society. Acknowledgments The authors would like to express our deepest appreciation and gratitude to all of our key informants for sharing their stories on life’s most vulnerable yet precious moments.
Authors’ note A. H. Y. Ho planned the study, conducted the data analysis, and wrote the article. J. K. H. Luk, F. H. W. Chan, W. C. Ng, C. K. K. Kwok, J. H. L. Yuen, and C. L. W. Chan planned the study, coordinated subject recruitment, and revise the article. M. Y. J. Tam and W. W. S. Kan helped conduct the data analysis and contributed to revising the article.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Seed Funding Program for Basic Research of The University of Hong Kong (grant number 201111159126).
References 1. World Health Organization. Interesting facts about ageing. World Health Organization. Web site. http://www.who.int/ageing/about/ facts/en/index.html. Published September 30, 2014. Accessed December 30, 2014. 2. Chui EWT, Chong AML, Ko LSF, et al. Elderly Commission’s Study on Residential Care Services for the Elderly Final Report. Hong Kong: Elderly Commission; 2009. 3. Census and Statistics Department. Hong Kong Population Projections 2012-2014. Hong Kong: Hong Kong Special Administrative Region Government; 2012. 4. Tse DMW. Palliative Care: Setting the Scene for the Future. Hong Kong: Synapse, Hong Kong College of Physicians; 2013; 12-16.
5. Lo RS, Kwan BH, Lau KP, Kwan CW, Lam LM, Woo J. The needs, current knowledge, and attitudes of care staff toward the implementation of palliative care in old age homes. Am J Hosp Palliat Med. 2009;27(4):266-271. 6. Department of Health. End of Life Care Strategy: Promoting High Quality Care for all Adults at the End of Life. London: Department of Health; 2009. 7. Department of Health and Ageing. Supporting Australians to live well at the end of life: National Palliative Care Strategy. Canberra: Department of Health and Ageing; 2010. 8. National Consensus Project for Quality Palliative Care. Clinical Practice Guideline for Quality Palliative Care, 2nd ed. Pittsburgh, PA: National Consensus project for Quality Palliative Care; 2009. 9. The King’s Fund. Delivering Better Care at End of Life: The Next Steps. London: The King’s Fund; 2010. 10. Department of Health. End of Life Care Strategy: Quality Markers and Measures for End of Life Care. London: Department of Health; 2009. 11. Lhussier M, Carr SM, Wilcockson J. The evaluation of an end-oflife integrated care pathway. Int J Palliat Nurs. 2007;12(2):74-81. 12. Luhrs CA, Penrod JD. End-of-life care pathways. Curr Opin Support and Palliat Care. 2007;1(3):198-201. 13. Johnstone RP, Jones A, Fowell A, Burton CR, Rycroft-Malone J. End of life care in Wales: evaluation of a care pathway-based implementation strategy. BMJ Support Palliat Care. 2012;2(2): 150-155. 14. Luk JKH, Liu A, Ng WC, Beh P, Chan FHW. End-of-life care in Hong Kong. Asian J Gerontol Geriatr. 2011;6(2):103-106. 15. Fuenmayor R. The self-referential structure of everyday-Living situation. A phenomenological ontology for interpretive systemology. Syst Practice. 1991;4(5):449-472. 16. Fuenmayor R. Truth and openness. An epistemology for interpretive systemology. Syst Pract. 1991;4(5):473-489. 17. Ochoa-Arias AE. An Interpretive-Systemic Framework for the study of community organizations. Syst Pract Act Res. 1998; 11(5):543-562. 18. William B. Systems Concepts in Action: A Practitioner’s Toolkit. Stanford, CA: Stanford University Press; 2010. 19. Ritchie J, Spencer E. Qualitative data analysis for applied policy research: In: Bryman A, Burgess RG., editors. Analyzing Qualitative Data. London: Routledge; 1993. 20. Ho AHY, Chan CLW. Liberating bereaved persons from the oppression of death and loss in Chinese societies: example of public health approach. In: Conway S., ed. Governing Death and Loss: Empowerment, Involvement and Participation. UK: Oxford University Press; 2011:198-228. 21. Ho AHY, Leung PPY, Chan CLW. Dignity and quality of life in community palliative care. In: Fong S, Tong KW., eds. Community Care in Hong Kong: Current practices, Practice-Research Studies and Future Directions. Hong Kong: City University of Hong Kong Press; 2014:319-341. 22. Chan CLW, Ho AHY, Leung PPY, et al. The blessing and curses of filial piety on dignity at the end-of-life: lived experience of Hong Kong Chinese adult children caregivers. J Ethn Cult Divers Soc Work. 2012;21(4):277-296.
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23. Hong Kong College of Physicians. Palliative Care: Setting the Scene for the Future. Hong Kong: Hong Kong College of Physicians; 2008. 24. Wiegand DL, Grant MS, Cheon J, Gergis MA. Family-centered end-of-life care in the ICU. J Gerontol Nurs. 2013;39(8):60-68. 25. Ho AH, Chan CL, Leung PP, et al. Living and dying with dignity in Chinese society: perspectives of older palliative care patients in Hong Kong. Age Ageing. 2013;42(4):455-461. 26. Scott AM, Caughlin JP. Managing multiple goals in family discourse about end-of-life health decisions. Res Aging. 2012; 24(6):670-691. 27. Powazki RD, Walsh D. The family conference in palliative medicine: a practical approach. Am J Hosp Palliat Care. 2014;31(6):678-684. 28. Kearney MK, Weininger RV, Vachon ML, Harrison RL, Mount BN. Self-care of physicians caring for patients at the end-of-
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life: ‘‘Being connected . . . a key to my survival’’. J Am Med Assoc. 2009;301(11):1155-1164. Ho AHY, Leung PPY, Tse DMW, et al. Dignity amidst liminality: suffering within healing among Chinese terminal cancer patients. Death Stud. 2013;37(10):953-970. Shih CY, Hu WY, Lee LT, Yao CA, Chen CY, Chiu TY. Effect of a compassion-focused training program in palliative care education for Medical Students. Am J Hospice Palliat Med. 2012; 30(2):114-120. Potash JS, Chan F, Ho AH, Wang XL, Cheng C. A model for art therapy based supervision for end-of-life-care workers in Hong Kong [published online May 28, 2014]. Death Stud. 2014. doi: 10.1080/07481187.2013.859187. Kellehear A. Compassionate Cities: Public Health and End of Life Care. New York: Routledge; 2005.
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Dignified Palliative Long-Term Care: An Interpretive Systemic Framework of End-of-Life Integrated Care Pathway for Terminally Ill Chinese Older Adults
American Journal of Hospice & Palliative Medicine® 1-9 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114565789 ajhpm.sagepub.com
Andy Hau Yan Ho, PhD, MFT, FT1,2,3, James K. H. Luk, FHKCP, FHKAM4, Felix H. W. Chan, FHKCP, FHKAM4, Wing Chun Ng, MN5, Catherine K. K. Kwok, BSW6, Joseph H. L. Yuen, MSS6, Michelle Y. J. Tam, MSc3, Wing W. S. Kan, MSW2, and Cecilia L. W. Chan, PhD3
Abstract Purpose: To critically examine the system dynamics necessary for successfully implementing a novel end-of-life integrated care pathway (EoL-ICP) program in promoting dignity and quality of life among terminally-ill Chinese nursing home residents. Methods: Thirty stakeholders were recruited to participate in 4 interpretive-systemic focus groups. Results: Framework analysis revealed 10 themes, organized into 3 categories, namely, (1) Regulatory Empowerment (interdisciplinary teamwork, resource allocation, culture building, collaborative policy making), (2) Family-Centered Care (continuity of care, family care conference, partnership in care), and (3) Collective Compassion (devotion in care, empathic understanding, compassionate actions). Conclusions: These findings highlight the importance of organizational structure, social discourse, and shared meaning in the provision of EoL-ICP in Chinese societies, underscoring the significant triangulation between political, cultural, and spiritual contexts embodied in the experience of dignity. Keywords death and dying, dignity, long-term care, transitional models, qualitative methods
Introduction By year 2050, 22% of the world’s population will be older than 60 years.1 Such dramatic rise in the number of older people will inevitably translate into much greater demands for long-term care services, as their ability to live independently will gradually diminish with increasing health deteriorations and disabilities. Although the ideals of ‘‘aging in place’’ facilitated through enhanced community and home care services are widely promoted and advocated through old-age policies around the globe, nursing homes (NHs) still play a vital role in meeting the supportive care needs of older adults, especially those who are weak and terminally ill. The vast significance of NH in caring of the frail and dying is reflected by the relatively high institutionalized rate worldwide, where Hong Kong ranked top with over 6.8% of its elderly population dependent on residential care, when compared to the other developed countries such as the United Kingdom at 4.2%, Australia at 4.4%, and the United States at 3.9%.2 Hong Kong is also facing the unprecedented challenge of rapid population aging, whereby the number of persons older than 65 years has surged over 40% in the past 2 decades and is expected
to reach 2.58 million within the next 30 years to account for 30% of its total population.3 These drastic demographic changes reflect an imminent and continuous proliferation of supportive and palliative care needs among the aged. Not surprisingly, increasing attention has been directed toward developing and enhancing end-of-life (EoL) care provisions in NHs for
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Division of Psychology, School of Humanities and Social Sciences, Nangyang Technological University, Singapore 2 Sau Po Centre on Ageing, The University of Hong Kong, Hong Kong 3 Centre on Behavioral Health, The University of Hong Kong, Hong Kong 4 Tung Wah Group of Hospitals, Fung Yiu King Hospital, Hong Kong 5 Community Care Services, Hong Kong West Cluster, Hospital Authority, Hong Kong 6 Tung Wah Group of Hospitals, Jockey Club Care and Attention Home, Hong Kong Corresponding Author: Andy Hau Yan Ho, PhD, MFT, FT, Division of Psychology, School of Humanities and Social Sciences, Nangyang Technological University, 14 Nanyang Drive, HSS-04-03, Singapore 637332. Email: [email protected]
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2 promoting dignity and quality of life among terminally-ill older adults.4,5 End-of-life integrated care pathway (EoL-ICP) is considered the gold standard for quality and holistic care for those facing mortality in most Western societies including the United Kingdom, Australia, and the United States.6-8 Founded upon a whole-system, person-centered approach to care that emphasizes interagency collaboration, EoL-ICP enables and empowers hospitals, long-term care facilities, and social service institutions to develop and implement a seamless spectrum of well-planned, coordinated, and monitored care for older patients with terminal illnesses and their families.9 Combining a continuum of intervention elements that include palliative care registration, advanced care planning and review, interdisciplinary care coordination and delivery, care in the last days of life, family support as well as bereavement care, the ultimate goal of EoL-ICP is to provide unceasing services while being responsive to individual and family needs, wishes, autonomy, and dignity.10 Although repeated studies in the West have shown that EoL-ICP is effective for improving patients’ quality of life, process of care, clinical documentation and assessment as well as bereavement levels of relatives,11-13 much less is known about its applicability and efficiency in the Chinese context. In a step toward the highest provisional standards of palliative long-term care, the Hong Kong West Community Geriatric Assessment Team together with the Tung Wah Group of Hospitals Jockey Club Care and Attention Home had piloted a novel EoL-ICP program in 2009. This first-of-its-kind program set out to provide palliative care for older NH residents with life-limiting illnesses and irreversible chronic diseases (ie advanced dementia, terminal cancer, end-stage heart disease, advanced chronic lung diseases with respiratory failure, and renal failure), to enable them to remain in a familiar environment during their last days of life and to facilitate a dignified and comfortable death. The program offered 2 pathways, namely, the Accident & Emergency (A&E) Pathway and the Hospital Pathway, both of which involved palliative care registration, advanced care planning, family carers support, and bereavement care. Elders who registered for the A&E Pathway receive care in the NH until the last moments of life; thereafter, they are transferred to the A&E department of the collaborating Queen Mary Hospital (an acute hospital) instead of being admitted to the chaos of an acute ward. Their advance care plans are strictly followed and a quiet environment is provided to allow them to die peacefully. Elders who registered for the Hospital Pathway go through an expedite pathway and are admitted to Fung Yiu King Hospital (a rehabilitation and convalescence hospital) for EoL care when they deteriorate instead of going to acute hospitals. A recent audit showed that the novel EoL-ICP program was effective in managing care coordination between NH and the collaborating hospitals, and had successfully facilitated a dignified and peaceful death for 10 residents who had undergone the A&E pathway while providing comfort and respite for their surviving family members.14 The aim of this study is to critically examine the underpinnings of palliative long-term care
provision from the perspectives of multi-stakeholders involved in the program, as well as, to identify the interplaying dynamics, mechanisms, and systemic factors that underscore the implementation practice of EoL-ICP in the Chinese context of Hong Kong.
Methods Study Design This pilot study adopted a qualitative design to examine the provision of dignified palliative care in long-term care facilities in Hong Kong. Ethics approval was obtained through the Institutional Review Board of the Hospital Authority Hong Kong West Cluster. In order to obtain a holistic understanding of the intricacies and dynamics of the novel EoL-ICP program, we adopted the interpretive-systemic framework (IFS) to guide our process of inquiry. This involved eliciting the views and perspectives of all stakeholders, including family caregivers, health care professionals, and policy makers who had played critical roles in and were significantly affected by the design, implementation, and care outcomes of the EoL-ICP program. The goal for adopting such multi-level framework of inquiry is to allow a systemic comprehension of the EoL-ICP program through the interpretive lens of different stakeholders that belong to the diverse contextual systems of palliative care and long-term care.15,16 While the IFS is an appropriate approach for studying organizational structure,17 it also facilitates the examination of interrelationships and boundaries between specific groups of stakeholders that affect the experience and manifestation of dignity and quality of life in EoL caregiving.
Recruitment and Sampling Guided by the ISF, participants representing 4 specific stakeholder groups involved in the novel EoL-ICP program were recruited to participate in the study. Specifically, 9 Medical Professionals, 9 Management Administrators, 6 NH Staffs, and 6 primary Family Caregivers of the old-age NH residents were recruited through purposive sampling (N ¼ 30). The inclusion criteria included those older than 18 years who have been involved in the EoL-ICP program for at least 1 year and have the ability to communicate in Chinese as well as to provide informed consent.
Interpretive-Systemic Focus Groups Independent focus groups were conducted with the 4 specific groups of stakeholders to collect rich experiential narratives and multiple interpretations on the novel EoL-ICP program. Based on the systemic inquiry guideline which emphasizes the 3 a priori of interrelationships, common perspectives, and decision-making processes for understanding the intertwined dynamics of a phenomenon,18 participants were asked to comment on 5 major areas. These include (1) their roles and experiences with the EoL-ICP program; (2) their interaction and relationships with the rest of the care system; (3) factors that
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enhance or hinder their experiences; (4) support and resources they need and they have; and (5) ways that may facilitate decision making and program implementation. Each focus group took approximately 120 minutes to complete, they were recorded, transcribed verbatim, and translated from Chinese into English by a professional translator. All focus groups took place between October 2011 and April 2012.
Table 1. Characteristics of Key Stakeholders.a Stakeholder groups
N
Family caregivers
6 3 females Primary family carers of NH 3 males residents 6 5 females 3 social workers 1 male 2 personal care workers 1 nursing home supervisor 9 5 females 4 geriatric nurses 4 males 3 doctors 2 accident and emergency nurses 9 5 females 3 nursing home superintendents 4 males 2 hospital managers 1 hospital chief executive 1 hospital cluster chief 1 government official 1 health professor
Nursing home staffs
Medical professionals
Data Analysis Framework analysis with both deductive and inductive approaches were adopted to analyze the data for generating important factors and themes that illuminate the successful implementation of EoL-ICP. Framework analysis is specifically developed in the context of applied policy research, one that has specific questions, a predesigned sample and a priori issue, and aims to meet specific information needs and provide outcomes or recommendations.19 The NVivo software assisted in coding, cross-referencing, storing, and retrieval of data. The particular process of exploring experimental narratives involved several steps of coding and data reduction. First, multiple readings and line-by-line coding were carried out by 3 members of the research team; written summaries and codes of the system dynamics that led to effective or ineffective implementation of the novel EoL-ICP program were created using the 3 a priori of interrelationships, common perspectives, and decision-making processes. Second, axial coding was conducted to develop and refine possible categories of responses; text files containing illustrative and descriptive quotes supplementing the emergent themes and subthemes were also created. Third, 3 members of the research team individually reviewed and defined the emergent themes and presented to one another for confirmation; once consensus was reached, operational definitions were created. Finally, relationships between categories, themes, and subthemes were proposed and mapped with supporting quotes from transcripts. Distribution of theme occurrences and frequency counts were also tabulated to provide further support of our interpretive results. To address issues of rigor and trustworthiness, emergent themes were constantly compared and contrasted within and across groups during regular meetings, while the final theme categorization and definitions were agreed upon by all members of the research team.
Findings Table 1 presents the background information of all stakeholders. Our analysis reveals 10 themes that elucidate the systemic factors required for the successful implementation of EoL-ICP in the Chinese context of Hong Kong. These themes overlap across all 4 groups of stakeholders, reflecting the important roles that organizational structure, social discourse, and shared meaning play in the effective provision and delivery of dignified palliative care in long-term care facilities. These 10 themes are further organized into the 3 categories of (1) Regulatory Empowerment, (2) Family-Centered Care,
Management administrators
Gender
Roles
Abbreviation: NH, nursing home. a N ¼ 30.
and (3) Collective Compassion. Each of these categories is considered in turn and supported by illustrative quotes from all stakeholder groups.
Regulatory Empowerment The first major theme category that delineates the system dynamics for implementing EoL-ICP is Regulatory Empowerment, which encompasses 4 subthemes relevant to the decisionmaking processes among all stakeholders groups. The first subtheme, Interdisciplinary Teamwork, includes the standardization of care procedures through effective communication between care professionals as well as enhanced care management coordination across all involved agencies to ensure highquality care and avoid unnecessary treatments for residents. In fact, standardizing procedures between all care departments was seen as one of the most critical aspects of the interdisciplinary approach, and in order to facilitate standardization, effective communication between care personnel was deemed indispensable. Patients suffering from terminal illness are not just dealing with one symptom but multiple symptoms . . . The current care structure requires them to visit different hospital departments for different types of treatment . . . not only do care procedures varies greatly, they are often intrusive and time-consuming, therefore the experience of care can be horrifying to terminal patients and their families . . . we need to standardize care procedures between different departments so that people can feel more at peace and dignified at the end-of-life. (Male, management administrator) We need to strengthen the system of communication between different care departments including the RCHE, the hospital as well as ambulance services, so that when a patient has registered for the EoL-ICP, every care personnel involved knows about it and can take
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4 appropriate actions for best possible care rather than introducing unnecessary medical procedures. (Female, medical professional)
sustain the provision of palliative care in NHs was also expressed by numerous stakeholders:
The second subtheme, Resource Allocation, involves infrastructure integration between NHs and hospitals so as to enhance medical accessibility among residents, as well as, the need to allocate more funding to sustain a consistent team of personal care workers for ensuring quality and familiarity in care. In fact, infrastructure reintegration to improve privacy was one of the most important facets for the promotion of dignity through the EoL-ICP.
We are very fortunate to have full support from the president of our organization as well as all members of the director board . . . From as early as the planning phase, they have shown their leadership and commitment in providing us with adequate resources and manpower to launch the EoL care pathway program. (Male, medical professional)
One of the reasons why our EoL care pathway program has been successful is because we are collaborating with a nearby hospital; this reduces the time and space between nursing home care and medical care, making medical services much more accessible to our patients. (Male, medical professional) We try to create a better living environment for patients at their final phase of life, the goal is to provide them with a peaceful and dignified place to die . . . When a patient is reaching the end-of-life, we try our best to provide them with a single room with a consistent personal care team so that they can be with their family in a private and familiar context to say their final goodbyes and farewells, outside of the busy care environment in normal resident rooms. (Female, medical professional)
The third subtheme, Culture Building, includes the development of greater knowledge capital in palliative long-term care via life and death education and training for professional caregivers, residents, and their families. Moreover, many stakeholders believed that educative programs that emphasized both practical and emotional competence are critical for preparing clinicians and frontline staffs to work proficiently with families facing death and loss: Before we formally launched the EoL care pathway program, we provided a lot of life and death education and palliative care training for our staffs, especially frontline and personal care workers, to let them become more familiar and comfortable with death and dying . . . These courses focused on communication, clinical care, and emotional self-care so as to better prepare them work with dying residents. (Female, medical professional) We used to be afraid to talk about death because it is a big taboo in our culture, but I think we have now become advocates for good deaths . . . Sometimes we even educate our residents and families about death, letting them know that it is a natural process of lifeWe now feel much more competent in dealing with life and death situations. (Female, nursing home staff)
The final subtheme that defines regulatory empowerment is Collaborative Policy-Making, and it involves management support and leadership to guide the implementation of EoLICP as well as government-led policy initiatives that support the further development palliative long-term care. Furthermore, the need for evidence-based practice to inform and
I understand that everybody wants to provide high quality EoL care to patients and families, but we often do not know how to improve or move forward . . . We need to build up a strong data base to show the government that work that we are doing is useful and meaningful so that they can begin to develop an actual policy for palliative long-term-care, this is the only way to obtain more public support and funding. (Male, management administrator)
Family-Centered Care The second major theme category that defines the systemic factors required for the implementation of EoL-ICP is FamilyCentered Care, which includes 3 themes relevant to the common perspectives of different groups of stakeholders. The first subtheme, Continuity of Care, considers individual resident and his or her family as 1 unit of care, whereby tailored family-focused care planning with timely and recurrent assessment are conduced to guide the delivery of holistic care from as early as program intake and well into bereavement. Such continuity is imperative for achieving the best possible care outcomes, while preventing unnecessary, futile, and harmful treatments. From the very start of clinical admission, our entire team of doctors, nurses and social workers would go through the patient medical records together, identify his or her needs as well as those of the family, and coordinate care that best reflect their wishes . . . Such a procedure ensures that every worker involved knows that this is a family facing the end-of-life, and that the care they receive will be consistence across the board . . . Our team also coordinates with different hospital departments so that when patients require their attention, no unnecessary or futile treatments will be done. (Male, medical professional) I think the consistency of care a patient receives is very important . . . If my wife is not in the EoL care pathway programme, she will need to go to different hospital departments to get the care that she needs . . . All the traveling, the waiting, the need to go to A&E can be very texting on the patient as well as their families . . . It is wonderful that my wife can receive all the care that she needs with the same care team from the very beginning till her very last days. (Male, family caregivers)
The second subtheme, Family Conference, requires professional care team to meet and communicate accurate information with residents and families constructively and respectfully so as to empower them in making care decisions that best address their needs and concerns. Numerous stakeholders had further pointed out the necessity to consider the
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different points of views of every family member including those from involved extended families so as to derive at an effective consensus in EoL care planning and management (Quote 12). Family members play a critical role in the overall planning and delivery of EoL care, we involve them as much as we can in the care decision making process. We hold regular care conferences . . . with honest and open communication with the entire family . . . It requires time, respect and a lot of patience, but It is utmost important for them to reach a consensus because that would minimize a lot of arguments and grudges in the future. (Female, medical professional) When my wife got sick, my children and I all talked to her about how she would like to be cared for . . . She said she doesn’t want to suffer . . . we talked about it more as a family and worked it out with the nurses and doctors here . . . I think it was very important to her that all of us were involved in the process. (Male, family caregiver)
The third subtheme that defines family-centered care is Care Partnership, and it involves the encouragement of active participation of residents and families in every level of care, where their unique strengths are honored and recognized for enhancing the overall supportive care capacity between professional and family carers. Many stakeholders also maintained that a strong working alliance would ultimately provide the much-needed sense of support, encouragement, and dignity to residents and their families during life’s most fragile moments. We need to work with residents and their family to develop the best care plan possible together . . . We need to change the mindset and the culture where patients and families are only seen as care recipients, because they have their strengths too . . . We can build partnerships with them to enhance the overall experience of care at the end-of-life. (Male, management administrator) The doctors and nurses are very patience . . . they will explain to you everything that you need to know about the illness . . . I can ask them for clarifications on things that I don’t understand and I feel comfortable telling them about my wishes and concerns. I think this form of partnership is very important. It makes me feel dignified because they value my opinions and take the time to address my needs. (Male, family caregiver)
Collective Compassion The third major theme category that illuminates the system dynamics of EoL-ICP is Collective Compassion, which contains 3 themes that exemplifies the interrelationships between all groups of stakeholders. The first subtheme, Devotion in Care, entails all stakeholders’ passion and dedication in helping NH residents and their families to cope with the existential pain of mortality as well as to achieve dignity at the EoL. In fact, stakeholders from all 4 groups spoke of the paramount importance of such undivided commitment, love, and patience, which in turn gave significant meaning to their work.
I believe we are involved in this project because we all have a passion to help those facing death and dying . . . We are all busy with our work, but we are not doing this just this because it is our job, but because we truly want our patients to find peace and comfort, we want them to find meaning at the end, and seeing that they do, we too can find meaning in our work. (Female, nursing home staff) My mother used lived in a privately-ran nursing home. The care that they provided were horrible, I always saw bruises and cuts on my mother’s hands and arms . . . The nurses and personal care workers in this new home are so caring . . . Every one of them are filled with love and looked after my mother with great patience and devotion . . . I feel much more at peace and dignified now than compared to before. (Female, family caregiver)
The second subtheme, Empathic Understanding, requires stakeholders to comprehend and truly appreciate the existential needs and sufferings of residents and families confronted by the pain of morality so as to derive a genuine understanding on life and death. Many stakeholders also pointed out that this understanding had illuminating effect on their own lives, as they begin to see a common humanity linking all mortal beings. Empathy is really important in our line of work; I always share with my colleagues about the life changing effects of empathy . . . It is about entering the worlds of our patents and the family that we care for, seeing things from their perspectives . . . and somehow I being to see myself, and understanding how I want to be treated when I reach the end of my life. (Male, medical professional) I once had a patient who told me she was had excoriating pain and she could not sleep. The first thing that I thought of was giving her a higher dose of morphine . . . But then she said, can you stay with me for a while? So I stayed by her bedside, and gradually, she was able to fell asleep. I realized then, all she ever wanted was some company. This understanding was so valuable . . . this experience worth more money than anyone could ever give me. (Female, nursing home staff)
The third subtheme that defines collective compassion is Compassionate Action, and it necessitates all stakeholders to translate their shared empathic understanding into unifying actions to provide residents and families with compassionate care to foster greater sense of dignity and solace at life’s most precious and vulnerable moments. A resident once who told us that he wanted Jell-O, and although our kitchen do not make them, one of our staff actually got home and prepared a box of Jell-O and brought it to him to share with his roommates the next day . . . Simple things like these can be most meaningful to people who are dying.’’ (Female, nursing home staff) The most important thing is what we do . . . we need to act with compassion, we need to treasure the time that we get to spend with our residents, and be mindful of how we can best care for them so that they feel dignified at the end of life. (Female, nursing home staff)
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Table 2. Frequency of Themes and Subthemes Occurrences Among All Stakeholder Groups.
Interdisciplinary teamwork Resource allocation Knowledge Cultivation Collaborative policymaking Regulatory empowerment Continuity of care Family conference Care partnership Family-centered care Devotion in care Empathic understanding Compassionate action Collective compassion
Family caregivers (n ¼ 6)
RCHE staffs (n ¼ 6)
Medical professionals (n ¼ 9)
Management administrators (n ¼ 9)
6 5 3 2 16 13 10 8 31 22 19 18 59
8 7 12 9 36 13 8 9 30 20 17 16 53
10 11 11 13 45 17 9 4 30 23 16 12 51
7 16 8 19 50 6 4 5 15 22 18 16 56
Abbreviation: RCHE, Residential Care Home for the Elderly.
Contesting Priorities Between Different Stakeholders
Discussion
Although the 4 stakeholder groups shared similar interpretations over the significance of regulatory empowerment, family-centered care, and collective compassion for the provision of dignified care through EoL-ICP, there are clear contesting priorities. As shown in Table 2, management administrators were much more concerned over regulatory empowerment when compared to family caregivers and NH staffs. Particularly, the themes of collaborative policy making and resource allocation appeared most frequently in the discussions among management administrators and medical professionals, while the themes of interdisciplinary teamwork and knowledge cultivation appeared most frequently among NH staffs. Moreover, family-centered care was of similar importance to family caregivers, NH staffs, and medical professionals but less so to management administrators. This result is comprehensible, given the fact that managerial and professional staffs are often more involved in policy development and service, whereas families and frontline workers are more concerned over the clinical competence and quality of care. Despite the various competing priorities between different stakeholders, it is evident that all stakeholders shared a common language in understanding and elucidating EoL-ICP. This common language is that of compassion, the deep awareness and intrinsic understanding of the suffering of others. The frequency of occurrences within the themes of devotion in care, empathic understanding, and compassionate action are vastly similar across all 4 stakeholder groups. Evidently, this link of compassion can provide a connecting platform for all stakeholders to express their concerns openly with the understanding that they all have the common goals of providing dignified care to NH residents facing the EoL, to build trust and partnership, and ultimately, to find cooperation and resolutions that address the needs of all involved parties.
This is the first study to critically examine a novel EoL-ICP program in Hong Kong which effectively manages care transitions between NH and public hospitals to promote dignity and quality of life among older residents facing terminal illness. By adopting an ISF of inquiry that elicited experiential narratives and multiple interpretations from 30 participants of 4 key stakeholder groups involved in the program, 10 themes have emerged to elucidate the system dynamics that underpin the successful implementation of EoL-ICP in the Chinese context. These 10 themes are further organized into 3 major theme categories that reflect the sociopolitical, socialcultural, and sociospiritual contexts that are embodied in the experience of dignity at the EoL, highlighting the importance of organizational structure, social discourse, and shared meaning in the planning, provision, and delivery of EoLICP in the Chinese context (Figure 1). The first theme category of regulatory empowerment characterizes the essential sociopolitical context for implementing palliative care in residential care facilities, and defines the organizational structures required for effective decision making and interagency collaborations within an EoL-ICP program. Our findings reveal that interdisciplinary teamwork is fundamental for achieving optimal care coordination and care management, which can be enhanced through culture building among professional and informal caregivers with greater life and death education.20,21 Moreover, collaborative policy making is crucially needed, as management leadership and evidence-based programming can better guide resource allocation to improve infrastructure integration, staff training, and retention for enhancing NH residents’ quality of care and dignity at life’s final margin. All of these underline the imperative of a government-led policy initiative to support the sustainable development of palliative long-term care in Hong Kong.22,23 The second theme category of family-centered care accentuates the sociocultural context that facilitates dignified palliative
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Figure 1. An interpretive-system framework of end-of-life integrated care pathway (EoL-ICP) for Chinese older adults.
care in NHs and illustrates the shared needs and perspectives of Chinese families coping with the EoL. Many stakeholders in our study emphasized the pivotal roles that family conference and care partnership play in safeguarding the dignity of terminally ill residents and their families, as the requisite for sustaining continuity of care is nowhere more important than in the provision of palliative long-term care.9,10 These findings are consistent with previous literature demonstrating that honest and constructive communications between professional caregivers and family carers, those that encourage participation and collaboration, are indispensable in alleviating dying patients’ pain, anxiety, and depression, as well as reducing unnecessary treatments and clinician–family conflicts.24,25 These findings further underscore the vital significance of family discourse for advancing care quality and equity.26-28 The final theme category of collective compassion illuminates the sociospiritual context that cultivates dignified EoL
care practices and clarifies the interrelationships between all stakeholders of the EoL-ICP program. United through the empathic understanding of terminally ill residents’ existential pain of mortality, all stakeholders aspired to ease such pain through compassionate actions, as their devotion in care grew strong and unshakeable with increasing involvement. Evidently, compassion is a critical thread woven through the many layers of systemic boundaries, mobilizing all stakeholders through a collective consciousness of shared meaning, compelling them to work tirelessly to alleviate the suffering of the dying and the bereaved. These findings are in line with the mounting evidence suggesting that empathy and compassion are qualities that enhance clinicians’ level of energy and effectiveness in working with patients with life-limiting illnesses.29,30 Thus, they highlight the quintessence of medical humanities training in the sustainable development of palliative long-term care.31,32
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Conclusion Although the generalizability of this pilot study is limited by its qualitative nature, the findings generated have provided an important framework to guide the implementation and advancement of EoL-ICP in the Chinese context. Additional research is now required to further explore the issues identified in this article and specifically include policy-driven initiatives to expand interdisciplinary palliative care provisions in longterm care facilities, education and training initiatives to inculcate a culture of family-centered practices for promoting dignified EoL care, as well as, public health initiatives to cultivate collective compassion and self-understanding in experience of death, dying, and bereavement. Under the rubric of population aging, the success of care for those facing mortality no longer rests on a small group of specialists or even the medical profession alone, but the concerted efforts and vested interest in living and dying with dignity of every individual, groups, communities, and government bodies of our global society. Acknowledgments The authors would like to express our deepest appreciation and gratitude to all of our key informants for sharing their stories on life’s most vulnerable yet precious moments.
Authors’ note A. H. Y. Ho planned the study, conducted the data analysis, and wrote the article. J. K. H. Luk, F. H. W. Chan, W. C. Ng, C. K. K. Kwok, J. H. L. Yuen, and C. L. W. Chan planned the study, coordinated subject recruitment, and revise the article. M. Y. J. Tam and W. W. S. Kan helped conduct the data analysis and contributed to revising the article.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Seed Funding Program for Basic Research of The University of Hong Kong (grant number 201111159126).
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