Conference Theme: Clinical, Legal and Administrative ChallengesFree Paper Presentation IIpublished_or_final_versio

Chan, CLW

Chan, CWK

Chan, FHW

Ho, AHY

Kwok, CKK

Luk, JKH

Ng, WC

Tam, MYJ

Yuen, JHL

HKU Scholars Hub

TitleDignified Care in LTC Settings: A Systemic- InterpretiveFramework for Community-Based End-of-Life Care Pathway inHong KongAuthor(s) Ho, AHY; Luk, JKH; Chan, FHW; Chan, CWK; Kwok, CKK; Ng,WC; Yuen, JHL; Tam, MYJ; Chan, CLWCitationThe 2013 Asia Pacific Regional Conference on End of Life andPalliative Care in Long Term Care Settings, Hong Kong, China,26-28 September 2013.Issued Date 2013URL http://hdl.handle.net/10722/205527Rights Creative Commons: Attribution 3.0 Hong Kong LicenseAndy H.Y. HoMSocSc, MFT, FT, PhD CandidateFellow in Thanatology, Association for Death Education and Counseling.Honorary Lecturer, Department of Social Work and Social Administration; Research Officer, Centre on Behavioral Health; The University of Hong Kong. with James K.H. LUK, Felix H.W. CHAN, Camis W.K. CHAN, Catherine K.K. KWOK, W.C. NG,  Joseph H.L. YUEN, Michelle Y.J. TAM, & Cecilia L.W. CHANA Systemic-Interpretive Framework for Community-Based                   End-of-Life Care Pathway in Hong KongDignified Care in LTC Settings:The Challenges of an Aging Population Persons aged 65+ is projected to increase from 13% of total population in Hong Kong in 2009, to 28% in 2039, accounting for more than 2.4 million peopleWorld ranking: 1/195 World ranking: 2/195Life expectancy at birth:83.42 yearsLife expectancy at age 60:25 yearsGlobal AgeWatch (2013)Old Age Dependency & Health Care Needs Under the context of population ageing, elderly dependency ratiowill dramatically increase from 180 to 450 in the next 30 years Currently, the Institutional rate of people aged 65+ stood at 6.8%Compared to 2.8% in Japan, 2.9% in Singapore, 1.4% in Taiwan051015202530354045505560652001 2004 2007 2016YearHA In-Patient Days of People aged 65+%01234567892007 2016HA In-Patient Days of Total Population0-64 65-79millionYearHospital Authority (2009)Integrated End-of-Life Care Pathway StrategyIntegrated End-of-Life Care Pathway Strategy has emerged as the gold standard of holistic and dignified care for older people facing terminal illness.  Multidisciplinary person-centered care Improving care and support for dying patients in the final years of life Starting as early as terminal diagnosis and continuing into bereavement A System-wide community-based approach  Moving beyond hospitals to include all health and social care agencies  Promote best practice, standardized care, multi-agency collaborationNational Health Services (2007)晚晴照顧先導計劃EoL Care Pathway for RCHE in HKWCIn 2009, the HKWC Community Geriatric Assessment Team, together with the TWGHs Jockey Club Care and Attention Home, Queen Mary Hospital and TWGHs Fung YiuKing Hospital piloted the “End of Life Program for RCHE in HKWC”. Providing Palliative Long-Term-Care to RCHE residents with irreversible chronic medical diseases and terminal Illness via a Structured End-of-Life Care pathway  Established upon existing medical and psycho-social care framework Residents remain in a familiar environment during their last days of life Manage care transition between RCHE and Hospitals  Reduce acute hospital admissions  Facilitate a dignified deathAED Pathway & FYHK Pathway Queen Mary Hospital Accident & Emergency (AED) Pathway (N=10) AD and DNR are discussed and made to patients’ electronic medical records Patients receive care at the RCHE until their very last moment of life Thereafter, transfer to the AED of Queen Mary Hospital  Involved medical staffs respect patients’ wishes and autonomy Death certificates are issued by the hospital to prevent unnecessary postpartum Body is stored at the QMH mortuary and transported directly to funeral homes TWGHs Fung Yiu King Hospital (FYKH) Pathway (N=32) Patients receive care at the RCHE until their last days of life Transfer to the palliative and hospice ward of FYKH through an expedite pathway until they pass away Death certificates are issued by FYKH where the body is stored until being transported to the funeral home Current Study: Systemic-Interpretive FrameworkA total of 32 RCHE residents have participated in programme, 10 in the AED Pathway and 32 in the FYKH Pathway. 3 residents had passed away with peace and dignity.  System-Interpretive Focus Groups with multiple-levels stakeholders  To examine the concept of dignified care in LTC settings from multiple perspectives  To explore the 1) inter-relationships, 2) perspectives, and 3) boundaries between different stakeholders and institutions that either enhance or impede decision making, care coordination, service delivery and programme implementation To provide a platform for multiple interpretations and debates on a single phenomenon from different system perspectives Data collection & analysis  All focus groups were conducted between October 2011 to April 2012 Each focus group was 90-120 minutes long, they were recorded, transcribed verbatim, edited for accuracy and coded independently by 3 researchers using Framework Analysis Fuenmayer (1996a, 1996b)Characteristics of Focus Groups Participants (N=30)Stakeholder Groups Male:Female Ratio Stakeholder RolesService Users 3:3 Family Caregivers (n=6)RCHE Staffs 1:5 3 Social Workers(n=6) 2 Personal Care Workers1 RCHE Supervisor Medical Professionals 4:5 4 Geriatric Nurses(n=9) 2 A&E Nurses3 Doctors Management Administrators 4:5 1 Government Official (n=9) 1 Health Professor3 Hospital Superintendents1 Hospital Supervisor1 Hospital Manager1 Hospital Cluster Chief1 Hospital Chief ExecutiveThemes Emerged from Focus Groups10 themes that elucidated the system dynamics required for successful implementation of dignified community-based EoL care pathway in Hong Kong have emerged from the analysis. These 10 themes are further organized into 3 major categories. 1. Regulatory Empowerment  Interdisciplinary Teamwork  Resource Allocation  Culture Building  Collaborative Policy Making 2. Family Centered Care  Continuity of Care  Family Care Conference  Care Partnership3. Collective Compassion  Devotion in Care  Empathic Understanding  Compassionate Action Regulatory Empowerment – Theme 1Interdisciplinary Teamwork Interdisciplinary Teamwork includes the standardization of care procedures through effective communication and support between different care professionals, as well as enhanced care management coordination across all involved agencies. ”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 EoLcare pathway program, every care personnel involved knows about it and can take appropriate actions for best possible care rather than introducing unnecessary medical procedures.”Natty [Nurse, Medical Professionals group]Regulatory Empowerment – Theme 2Resource AllocationResource Allocation includes enhancing patients’ privacy and greater accessibility to medical care, as well as the need to allocate more funding to sustain a consistent team of personal care workers in RCHE. “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.”  Josh [Doctor, Medical Professional group]Regulatory Empowerment – Theme 3Culture BuildingCulture Building includes the development of more knowledge capital in palliative long-term-care care via life and death education for professional caregivers, patients and their families.“We need to educate patients and families early on in their illness trajectory about palliative care, starting with frontline staff training at RCHEs and hospitals, and have them pass on the knowledge to the patients and families that they serve… letting them know how to prepare for death with peace and dignity.”Jose [Hospital Manager, Management Administrators group] Regulatory Empowerment – Theme 4Collaborative Policy MakingCollaborative Policymaking includes management support and leadership, evidence-based practice to guide program development, as well as a government-led policy initiative with a sustainable legal structure that supports EoL Care Pathways. “I believe having a supportive leader is fundamental as workers need to know that they have someone to depend on when dealing with life and death situations… We also need to build up a strong data base to show the work that we are doing is useful and meaningful, this is the only way to obtained more funding and policy support.”  Kathy [Supervisor, RCHE Staffs group]Family-Centered Care – Theme 1Continuity of CareContinuity of Care considers the patient and family as one unit of care, placing them at the forefront of holistic and personalized EoL care planning and deliver with one consistent care team for achieving the best care outcome possible.“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 taxing… It is wonderful that my wife can receive all the care that she needs with the same care team.”Peter [Family Caregiver, Service Users group]Family-Centered Care – Theme 2Family ConferenceFamily Conference requires professional care teams to meet and communicate accurate information with patients and families constructively with utmost respect and dignity, empowering them to reach care consensus that best address their needs.“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 conference with patients and famlies… and we organize of our work around their needs and wishes… It is imperative that we respect their choices.” Fong [Geriatric Nurse, Medical Professionals group]Family-Centered Care – Theme 3Care PartnershipCare Partnership encourages patients and families to be actively involved and participate in every level of care, as their unique strengths are recognized and honored by their professional care team for forming care partnerships.“Every patient and family are unique, they have their needs as well as their strengths. We have to identify their strengths and work with them as a team towards building it… We want them to be strong psychologically and emotionally so that they can support themselves during difficult times…”Kathy [Supervisor, RCHE Staffs group]Collective Compassion – Theme 1Devotion in CareDevotion in Care entails stakeholders’ undivided devotion to achieving dignified care for dying patients and their families at the end-of-life.“I think we are involved in this project because we all have a passion to help those facing death and dying, rather than a set of laws and regulations that requires us to … We all shared the same devotion and passion in helping elderly patients and their families… It will not work if don’t share the same vision, the same passion.”Mann [Hospital Supervisor, Management Administrators group]Collective Compassion – Theme 2Empathic UnderstandingEmpathic Understanding requires stakeholders to truly understand the worlds of those facing mortality so as to derived at shared, relational understanding on the experience of death and dying.“Being involved in the EoL care pathway program allowed me to see things from multiple perspectives, seeing things from my patients’ eyes had opened my eyes… I now know what I want when I reached the age of my patients… In a way, I am setting my own path and helping myself in later life by pushing forth this meaningful program.” Hailey [Hospital Superintendent, Management Administrators group]Collective Compassion – Theme 3Compassionate ActionsCompassionate Action requires all stakeholders to act in harmony and in unison to provide dignified care to dying patient at the end-of-life. “Everyone of us has put a lot of effort into this, as we really do want to make a difference in the lives of our patients… And we can clearly see the changes and benefits, that the quality of life of older dying patients have improved at the end-of-life because of the care pathway programme.”Wendy [Doctor, Medical Professionals group]Frequency of Themes & Categories OccurrencesService Users (n=6)RCHE Staffs (n=6)Med. Professionals (n=9)Man. Administrators (n=9)Interdisciplinary Teamwork 6 8 18 5Resource Allocation 10 8 18 33Knowledge Cultivation 3 21 10 8Collaborative Policymaking 2 9 24 44Regulatory Empowerment 21 46 70 90Continuity of Care 13 13 19 6Family Conference 10 7 9 4Care Partnership 10 9 4 2Family-Centered Care 33 29 32 12Devotion in Care 22 20 28 22Empathic Understanding 19 17 16 12Compassionate Action 18 16 12 16Collective Compassion 59 53 56 50An Interpretive-Systemic Framework for Community-Based EoL Care Pathway (Ho, 2013)Collective Compassion• Devotion in Care• Empathic Understanding• Compassionate ActionRegulatory Empowerment• Interdisciplinary Teamwork• Resource Allocation• Knowledge Cultivation• Collaborative Policy MakingFamily-Centered Care• Continuity of Care• Family Conference• Care PartnershipSocio-Political EnvironmentSocial-Cultural Fabric Social-Spiritual ForcesDiscourseDiscussionPromoting Dignified Palliative Care in LTC SettingsTo push forth the aspiration of dignified care, a common discourse is needed among all stakeholders involved in the EoL care pathway program, one that penetrates all layers of structures and boundaries within a health and social care system.  Discourse serves as an important channel of power and social control that governs interactions and dynamics between different societal members (Foucault 1926-1984; Barth, 1998; Powell, 2011) The discourse of Compassion can provide a connecting platform for all stakeholders to: Share concerns openly with understanding  Build trust and partnership Derive at a resolution that would addresses that needs of all parties   Conclusion The notion that long-term care facilities will become future hospices to care for older terminally ill people is fast becoming a reality. The sustainability of palliative long-term-care rested upon: Holistic health care policies and practices that are rid of the pragmatic piecemeal approach Commitment to the promotion of healthy ageing with that of appropriate end-of-life care A public health discourse of compassion for it reminds us of our cultural, spiritual and political responsibilities towards one another in our shared experience of death and moralityKellehear (2005);  Kellehear & O’Conner (2008)Reference Barth, L. (1998). Michel Foucault. In R. Stones (eds.) Key Sociological Thinkers (pp.252-265). New York: New York University Press. Fuenmayor, R. (1991a). The Self-Referential Structure of Everyday-Living Situation. A Phenomenological Ontology for Interpretive Systemology. Systems Practice, 4, 449-472.Fuenmayor, R. (1991b). Truth and Openness. An Epistemology for Interpretive Systemology. System Practice, 4, 473-489. Global Age Watch (2013). Data and analysis on population ageing. Retrieved from http://www.helpage.org/global-agewatch/Hospital Authority (2009). Health People Stay Health: Strategic Service Plan 2009-2012. Hong Kong: Hospital Authority. Ho, A.H.Y. (2013). Living and Dying with Dignity: An Systemic-Interpretive Framework. Unpublished Doctoral Thesis. The University of Hong Kong. Kellehear, A. (2005). Compassionate Cities: Public Health and End of Life Care. New York: Routledge. Kellehear, A., & O’Conner, D. (2008). Health-promoting palliative care: A practice example. Critical Public Health, 18, 111-115. National Health Service (2012). National End of Life Care Programme: The Care Pathway. Retrieved from http://www.endoflifecare.nhs.uk/care-pathway.aspxPowell, J.L. (2011) Foucault, Discourse of Death and Institutional Power. Illness, Crisis & Loss, 19(4), 351-61.andyho@hku.hkThank you. This body of work is funded by the Seed Funding Programme for Basic Research (Ref no: 201111159126) of the University of Hong Kong.We would like to express our deepest appreciation and gratitude to all of our participants for sharing their stories on life’s most precious moments; this has truly been a rewarding and humbling experience. 

Dignified Care in LTC Settings: A Systemic- Interpretive Framework for Community-Based End-of-Life Care Pathway in Hong Kong

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Dignified Care in LTC Settings: A Systemic- Interpretive Framework for Community-Based End-of-Life Care Pathway in Hong Kong

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