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Best Practices for Working with the Dying and the Family in End-

of-Life Care

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© Sau Po Centre on Aging, University of Hong Kong

Commissioned by the Salvation Army in 2017

Principal Investigator

Dr. Lou, Vivian

(Sau Po Centre on Aging & Social Work and Social Administration, University of Hong Kong)

Co-Investigator

Prof. Fang, M.S. Christine (Faculty of Social Sciences, University of Hong Kong)

Dr. Kong, Sui-Ting (Faculty of Social Sciences, University of Hong Kong)

Research Team Member

Miss Leung, Shirley (Sau Po Centre on Aging, University of Hong Kong)

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Content

Executive Summary ........................................................................................................ 4

Dying with Dignity is a Challenge in Hong Kong ............................................................ 6

Objectives of this study .......................................................................................... 7

Achieving Dignified Death in Hong Kong: Rejuvenating Relational Personhood

through Psychosocial End-of-Life Care ........................................................................... 9

Practical and Organizational Capacity Building for Sustaining Relational

Personhood ............................................................................................................ 9

Consolidation of Practice Knowledge for Working with the Dying and the Family

.............................................................................................................................. 10

Family Intervention in EoL Care ................................................................... 10

Narrative Therapy in EoL Care ...................................................................... 11

Investigation Framework and Research Methods ....................................................... 13

Research Methods ................................................................................................ 13

Best Practices in Sustaining Personhood in End-of-Life Care – The CORE-UPHOLD

Model of Step Care ...................................................................................................... 15

Multi-dimensional and Multi-layered Intervention: IRS + SEE ............................. 17

Multi-dimensional Intervention: Individual-Relational-Societal (IRS) ......... 17

Multi-Layered Intervention: Sensory-Emotional-Existential (SEE) ............... 19

The Seven Principles for Best Practice in CORE-UPHOLD ..................................... 20

CORE-UPHOLD Across Time: Step Care Model in the Context of Dying and

Changing Personhood .......................................................................................... 22

Step 1 Identifying Personhood Configuration .............................................................. 23

Protocol 1: Relational Personhood & Care Capacity Assessment (RPCCA-Long) . 26

Step 2 Rejuvenating Relational Personhood ................................................................ 37

Protocol 2: Relational Personhood Advance Care Intervention (RPACI)^ ............ 39

The 9-Grid Square for Achieving Relational Personhood: Good Practices/Skills . 41

Step 3 Upholding Personhood + Legacy ....................................................................... 48

Protocol 3: The Lasting Agenda ........................................................................... 50

Recommendations ....................................................................................................... 54

Reference ..................................................................................................................... 55

Appendix I Consent ...................................................................................................... 58

Appendix II Interview Guidelines for Family Members ................................................ 59

Appendix III Demographics of Analysed Cases and Interviewees ............................... 60

Appendix IV List of Emotions and Correspondent Practices for Distress Alleviations .....

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Appendix V Relational Personhood & Care Capacity Assessment (RPCCA - Short) ..... 65

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Executive Summary

This study has contributed to the development of a culturally appropriate model, CORE-UPHOLD, for

psychosocial end-of-life care by extending the concept of personhood and translating relevant

theories into learnable best practices. Examining case recordings of end-of-life care cases, to look for

practices that promote the personhood of institutionalized dying older adults, informs the

construction of the CORE-UPHOLD as a step-care model. CORE-UPHOLD consists of three major care

steps namely (1) Identifying Personhood Configuration, (2) Rejuvenating Relational Personhood and

(3) Upholding personhood + legacy. It delineates a process of intervention for sustaining the

diminishing sense of self due to physical deterioration, shrinking cognitive ability and expressiveness,

with a focus on supporting the relational personhood of the older adult pre-, peri- and post-death

care to achieve optimal psychosocial EoL care

To facilitate the optimal application of CORE-UPHOLD, seven principles are also generated to shed

light on the (1) foundation, (2) clinical process, (3) timing, (4) inter-disciplinarity and (5) sustainability

of the model in practice (p.19). CORE-UPHOLD further proposes a ‘multi-dimensional and multi-

layered intervention’ – IRS-SEE (Individual-relational-societal/institutional personhood & sensory-

emotional-existential support) – in promoting dignity and sustaining personhood in end-of-life care.

Case analysis has also yielded three protocols for supporting psychosocial care practitioner in

configuring the personhood of the dying, rejuvenating and upholding the personhood, to inform the

future and further reproduction of good practices in promoting quality end of life care.

Step 1: ‘Identifying Personhood Configuration’ – characterized by holistic assessment (see Protocol

1 – Relational Personhood and Care Capacity Assessment (RPCCA)), and it requires the care manager

(professional care workers) to complete the baseline and concurrent assessment (RPCCA),

provide/support Advanced Care Intervention (Protocol 2), set the expectations right for different

parties for the nearing of death of the older adult, facilitate the participation of the family in the

future care planning and implementation, and coordinate different aspects of care and cross-system

transition.

Step 2: ‘Rejuvenating Relational Personhood’ – cross-system and cross-disciplinary collaboration and

coordination underpin the success of this step of care. Proper pain and symptom management lays

the foundation for the realization self through personhood-rejuvenating activities (see Protocol 2 –

Relational Personhood Advance Care Intervention) as indicated by Protocol 1.

Step 3: ‘Upholding Personhood + Legacy’ – the goal is to map out the psychosocial care plans and

care preferences of the dying elder; to empower the family and institutions to deliver appropriate,

person-centered care. For doing so, medical intervention for pain and symptom control as well as

handling and monitoring of body fluctuations remain to be essential, particularly for enabling the

older adults to stay in the RCHE as long as possible. Hence, cross-system and cross-disciplinary

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collaboration and coordination underpin the success of this step of care. Protocol 3 – The Lasting

Agenda provides a checklist of interventions in the last few days of life of the older adults, so as to

uphold both the personhood and the legacy of the dying beyond death.

CORE-UPHOLD is a cultural-sensitive evidence-based psychosocial social care model developed to

guide EoL care in RCHEs. It is currently the first theory-driven protocol that aims at improving medical-

social integration and early psychosocial end-of-life care in Hong Kong. The 3-step process, orientated

around IRS-SEE, provides well defined protocols that EoL practitioners can follow to achieve optimal

dignity at the end-of-life stage of institutionalized older adults. Not only the individual self but also

relational self are profoundly nurtured and empowered through clinical skills which are distilled from

practice data and enriched by compatible narrative therapy and family intervention practices. We

recommend training for psychosocial practitioners of participating RCHEs, on essential and advanced

competence for pushing a pilot on the CORE-UPHOLD model in a larger scale. This further

investigation also allows us to confirm the model’s applicability in societies with similar cultural

concerns over the participation of family and significance of relational self, being relevant to many

Asian cultures but not limited to those.

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Dying with Dignity is a Challenge in Hong Kong

In Hong Kong, 93% of deaths happen in the hospital; among which, 79% are over 65 years old and

nearly half are over 80. Ageing population has already re-shaped the demographics of the dying.

Deterioration in physical functioning with age creates demands for intensive care which partially

contributes to a comparatively high institutional rate of older adults in Hong Kong (7% of the older

adults in Hong Kong live in care institutions) (WHO, 2015). 68% of institutionalized older adults are

over 80 years old; 81% are living with co-morbidities of two or more kinds of chronic illnesses

(hypertension, stroke and dementia being the top three chronic illnesses) and 44.6% suffers the

highest level of impairment in managing activities of daily living (ADL), needing help with mobility,

eating, toileting, bathing, dressing and transferring (Census and Statistics Department of HKSAR,

2009). For older adults with high level of frailty, institutional care seems to be inevitable particularly

for families of low care capacity.

To improve the quality of EoL care in Residential Care Homes for the Elderly (RCHEs), (1) enhancing

medical-social partnership between RCHEs and public health system, and (2) facilitating knowledge

development in psychosocial care are they two major strategies. The first strategy is partially realized

by conducting an ‘Analytical Study on the Four Medical-Social Shared Care Model Cases in Providing

EoL Care in Elderly Residential Care Homes’, commissioned to the Faculty of Social Sciences of the

University of Hong Kong in 2015 (Fang et al., 2016; Kong et al., 2016; Kong et al., 2017). In this 1st

phase of the research, findings cast light on the importance of ‘social dignity’ and ‘relational

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personhood’ in providing quality EoL care in RCHEs. We have also identified parameters and the

unique functions of psychosocial care in achieving a socially and culturally desirable form of dignity,

when death is approaching. Through transforming the formal care systems and empowering families

and friends, Salvation Army’s EoL project marks a balance from a medical care model to a social care

model which is also considered as an international trend (Brown & Walter, 2013).

The 2nd phase of the research is hence focusing on the second strategy of EoL care service

development – knowledge development of psychosocial care practices as implemented in the EoL

cases of the Salvation Army’s Project on Palliative Care in Residential Care Homes for the Elderly. This

study responds to the surging demand for holistic care and the rising concern of transforming the

medical-led EoL care model into a more psycho-social-cultural oriented model of care.

Objectives of this study

Fig. 1 The 6-Step Care Framework of the Salvation Army Palliative Care in RCHE Project

This study aims at deepening our understanding of the best practices of involving the RCHE residents

and their families (family-alike) in EoL care in Hong Kong. The ultimate goal of attending to these

practices is to honour the dying’s dignity by sustaining their relational personhood despite the

dwindling physical and mental capacities in different steps of care, including Step 2: case assessment,

Step 3: care planning and implementation, and Step 4: service delivery in the last few weeks/days

of life.

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1. To examine how the practice models and protocols of the SA Palliative Care Project effectively

involve the dying and the families in assessment and care planning, in the context of providing

end of life care in Hong Kong residential care homes for the elderly (RCHEs), with a specific focus

on promoting psychosocial well-being of users.

2. To systematically capture how the culturally-appropriate (a) ‘relational personhood’ and (b)

extensive family engagement are sustained in the SA Palliative Care Project, and their impact on

the quality of care, proxy empowerment and the psychosocial outcomes of both the residents

and the families (e.g. the preparation for death and departure).

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Achieving Dignified Death in Hong Kong: Rejuvenating Relational

Personhood through Psychosocial End-of-Life Care

Holistic well-being of dying older adults requires both quality medical and psychosocial

care to achieve. In addition to pain and symptom control, psychosocial care focuses on

smoothing out the problems encountered in the interactions of the individual with the

social environment, in order to improve one’s quality of life. Therefore, psychosocial

care discipline believes that the well-being of people relies heavily on self-actualization,

supportive relationships and proper psychosocial functioning for coping with risks and

contingencies. The latest development in social work and social care promotes the

recognition of ‘relational self’ and ‘relational autonomy’(Ribbens-McCarthy, Hooper, &

Gillies, 2013), alongside the resuming of the bodily functions in end-of-life care. Social

care professionals therefore attend more to meeting the psycho-social and spiritual

need, so to allow the dying persons to experience a sense of fulfilment through self-

actualization and relationship reconciliation (Ho, Chan, & Leung, 2014).

Practical and Organizational Capacity Building for Sustaining Relational

Personhood

By examining the sufferings of the dying older adults in RCHEs and how their concept

of ‘self’ was constructed in time and in relationships, Kong et al. (2016) proposed three

categories of strategies which are found to effectively sustain the preferred sense of

self of the dying and bring psychological comfort to them. The strategies are (1)

resuming social connectedness, (2) expression of the self in supportive relationships

and (3) bringing psychological comfort alongside medical care. All these strategies

share the identical assumption that nurturing and supportive relationships built

around the dying elderly are the primary condition for achieving dignity at the end of

life.

Nonetheless, to conserve the personhood of Chinese residents, it is found that

empowering RCHEs with an appropriate environment, structure and resources is

critically important. Kong et al. (2017) further propose that (1) equipping the

environment with an appropriately located palliative care room that has sufficient

space and privacy for family participation, (2) streamlining the structure to ensure

continuous flexible, personalized and chosen care and (3) cultivating a common vision,

mutual trust and suitable manpower for culturally appropriate relational personhood-

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focused EoL care in RCHEs are effective strategies for enhancing RCHE’s capacity in

promoting dignified death of older adults. EoL care practices were also transformed by

these organizational capacity building strategies: conventional geriatric assessment

was extended to include communicability, spirituality, family dynamics, trust,

conflicts/disagreements, understanding of the family’s roles, and the identification

and the care capacity of the proxy; the individualistic model of care could be

transformed into a culturally appropriate relational model.

Consolidation of Practice Knowledge for Working with the Dying and the Family

To promote quality end-of-life care, we have found the pivotal role of Narrative

Therapy and Family Intervention, as clinical skills, to support practices of ‘Life Review’,

‘Family Conferences’, ‘Coordinated Care’, ‘Advanced Care Planning’ and ‘Grief and

Remembering’. These practices further enhance self-articulation and expression of the

dying, family love and care, multi-stakeholder communication, cross-discipline

coordination and care transitions that mark the features and challenges of end-of-life

care.

Family Intervention in EoL Care

Dying is not just a process experienced by the individual, but also family carers. The

importance of working with family carers and support them to take up the proxy role

and perform well in care and decision making is undeniable. Caregiver Family Therapy

has been applied to address a wide range of problems experienced by the family carers,

for the alleviation of family caregiver stress (carers’ burden) and coping with palliative

care demands when death is imminent (Allen, 2009; Qualls & Williams, 2013).

The problems experienced in caregiving usually drive the role (re-)structuring in the

family to accommodate to the emerging care needs. Sufficient self-care of the carers

has to be ensured in the adaptation processes, and the changes in role (re)structuring

will not deleteriously affect the development of other members in the family

(widening the lens). These processes affect the way the problems are framed and

reframed, leading to different ways of adaptations; while these adaptations should

work to support the enhancement of the relational personhood to sustain individuality

of the dying despite deterioration. In this regard, caregiver family therapy has offered

a framework for analysing the family adaptations to provide quality and sufficient care

for the ageing and dying member(s) in the family. The Caregiver Family Therapy has

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proven effectiveness in working with families which are at risk of dysfunctional

relationships (low communicating, low involvement, and high conflict) when one of

their relatives has advanced cancer. It also led to improved outcome in complicated

grief and depression.

Other family-based interventions in EoL care are also examined by Allen (2009), for

example the Legacy Project Intervention. The goal of the project is promoting the

needs and growth of all family members in accordance with family values. From

baseline to post-intervention assessment, it usually lasts from nine to ten weeks. It is

tried out with dyads with different educational level and different degree of

functionality with 17 dyads in total. All participants revealed improved family

communication, reduced sense of carers’ burden and enhanced meaning making. This

approach has potential to be combined with narrative techniques as applied in couple

or family relationships.

Narrative Therapy in EoL Care

In view of the need to look at promoting articulation of self in relation to significance

others, be it family members, friends, colleagues and neighbours, through

conversations, the application of narrative techniques/therapy in EoL care is reviewed

here. Narrative therapy has been applied to working with older adults with early stage

of memory loss (Young, 2010; Scherrer, Ingersoll-Dayton & Spencer, 2014), patients

with advanced cancer (Lloyd-Williams et al., 2012), COPD patients (Elofsson & Ohlen,

2004), users in the adult hospice in the form of dramatherapy (Rehouse, 2014) and

bereaved families (O'Connor et al., 2003; Ando et al., 2011). Both positive effects and

no difference with control groups are seen in the literature, while in this report,

narrative techniques which are effective in promoting self-expression, bonding and

communication are captured with the help of the Ring Theory of Personhood (Krishna,

2015).

The evidence of the application of narrative therapy in EoL care shows that ‘patients

whose narratives had high emotional disclosure had significantly less pain and

reported higher well-being scores than patients whose narratives were less emotional’

for COPD adults (Cepeda et al., 2008). Engaging older adults who display strong

emotional distresses in narrative therapy could therefore help improve their overall

http://www.ncbi.nlm.nih.gov/pubmed/?term=Lloyd-Williams%20M%5BAuthor%5D&cauthor=true&cauthor_uid=23219061

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well-being. There is also evidence on the effectiveness of narrative therapy for working

with advanced cancer patients that it can improve depression and anxiety (Lloyd-

Williams et al., 2012). It further helps adult hospice users, as shown in a qualitative

evaluative study, to achieve existential well-being by discovering meaning at the end

of life - palliative care patient uses dramatherapy to create a life-story, in the form of

a book, for her grandchildren (Redhouse, 2014). These techniques can be used on

couples as demonstrated in the Couples Life Story Approach – it is applied to working

with couples with a spouse having memory loss to help them narrate the

story of their life together. This narrative approach is augmented by mementoes (e.g.,

photos, cards) that are collected by the couple during the intervention. Significant

memories are elicited from both partners and developed into a Life Story Book. This is

how existential well-being could be achieved through not only the individual ring of

personhood but also the relational ring.

These stories, or narratives, offer individuals, ‘‘a framework for understanding a

purpose of life, connecting past events, and planning future actions’’ (Clark 2001, p.

275). Hence, narrative therapy enables practitioners to attend to the temporality of

lived experiences and to enable the older adults to realize that there is no one way to

make sense of his/her complex lived experiences, and thus, ‘‘there is always room to

alter stories’’ to one’s preference (Lawson and Prevatt 1999, p. 288)’ (p.92). The

discovery of the person-in-time and the person-in-relationship have already found to

be important to help the older adult in self expression and also in the articulation of

likes and dislikes in planning for care (Kong et al, 2016).



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Investigation Framework and Research Methods

The investigation of best practices of involving the residents and their families (family-alike) in EoL

care, alongside the deterioration process of the dying elders in Residential Care Homes (RCHEs) are

analysed at both the procedural and the practice levels. To be specific, two types (type A and type B)

of practices will be captured and conceptualized in this study.

Type A: The procedural level looks at (a) principles, (b) procedures and (c) mechanisms for

assessing the personhood of the dying resident and the care dynamics/capacity of the

family, as well as those for ensuring quality service delivery for enhancing psychosocial

outcomes. Underlying this attention, we hope to distil the effective principles, procedures

and mechanisms in this EoL care model pioneered in RCHEs.

Type B: The practice level focuses on how the practitioners respond to the care demand

arising from practice and interact with the dying residents and the family, so that the dying

and the family can be genuinely involved in assessment and care delivery in residential EoL

care for improving the psychosocial outcomes.

Fig. 2 Investigation Framework for Capturing Practices that Sustain the Personhood of the Dying

Research Methods

This qualitative study aims at identifying strategies and processes involved in achieving and realizing

relational personhood of dying older adults in RCHEs. As the Ring Theory of Personhood (Krishna et

al., 2015) is found to have an ‘emergent fit’ to categorize components for realizing ‘relational

personhood’ of dying Chinese adults, it is employed in this study for assisting the categorization of

good practices for further analysis and conceptualization of good practices. This layer of coding is to

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test the applicability of the Ring Theory of Personhood in making sense of EoL care practices in Hong

Kong. While, practices which are unable to be categorized by the Ring Theory of Personhood are

subject also coded to shed light on the distinctiveness of local EoL care.

Constant comparative analysis (Strauss & Glaser, 1967) is conducted in this study to conceptualize

the practices of social workers involved in the handling of EoL cases in the SA Palliative Care Project.

Links of concepts are developed to look at the major work processes carried out at different stages,

namely ‘case assessment’, ‘care planning and implementation’, and ‘service delivery in the last few

weeks/days of life’. Psychosocial interventions for promoting relational personhood, empowering

family to perform EoL care and become personhood-proxy, and making necessary institutional

changes are systematically captured, and sensory, emotional and existential inventions for removing

barriers are also discovered.

Sampling and Data Collection

Case recordings of 18 EoL cases contribute to the majority of the data. They are selected by

experienced social workers in the SA Palliative Care Team, that they are either completed cases

(with a full range of experiences of EoL care) or those identified as rich in older adult and family

participation. This set of data consists 900+ pages of anonymised documentation on

multidisciplinary work, medical and psychosocial interventions for EoL cases from a variety of

participating RCHEs in this project. (Ethical Approval Number: EA1506054 )

3 focus group interviews with social work practitioners and major family carers were conducted

to saturate the concepts, themes and processes emerging from the analysis of the case

recordings (1.5-2 hrs each) (See Appendix I, II & III)

Rigours

Triangulation with different sources of data and divergent analysis between analysts

Clear documentation of the development of analysis for forming a transparent audit trail

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Best Practices in Sustaining Personhood in End-of-Life Care –

The CORE-UPHOLD Model of Step Care

End-of-life care (EoL care) is a continuous process for promoting dignified death which is argued to

be defined by the realization of personhood (Chochinov, 2002; 2014; Chochinov et al., 2014). To

rebalance the focuses on medical treatment choices, pain and symptom management options and

the exercise/withdrawal of life sustaining treatments, we have to revisit the idea of ‘total pain’ of the

dying, extending EoL care beyond the medical model to embrace the psychosocial needs of older

adult. Taken into account the Chinese culture that prevails in Hong Kong, family participation in the

different steps of care is not only preferable but also constitutive to the construction of self of the

dying older adults (Kong et al., 2016). The Ring Theory of Personhood developed in the Singaporean

Asian culture (Krishna & Alsuwaigh, 2015) therefore finds its cultural fit in the Hong Kong Chinese

familial culture which highlights the dialectical relationship between individual and relational

personhood, and is able to inform the development of culturally appropriate intervention model for

EoL care.

In this study, best practices for promoting the personhood of institutionalized older adults in EoL care

are systematically captured and analysed, arriving at the CORE-UPHOLD model of step care. This

model maps out the steps for performing ‘multi-dimensional and multi-layered intervention’ (IRS-

SEE: Individual-relational-societal/institutional personhood & sensory-emotional-existential support)

in promoting dignity and sustaining personhood in end-of-life care. CORE-UPHOLD consists of three

major care steps namely (1) Identifying Personhood Configuration, (2) Rejuvenating Relational

Personhood and (3) Upholding personhood + legacy. It delineates a process of intervention for

sustaining the diminishing sense of self due to physical deterioration, shrinking cognitive ability and

expressiveness, with a focus on supporting the relational personhood of the older adult pre-, peri-

and post-death care. The model of CORE-UPHOLD is therefore to reiterate the significance of

personhood as the ‘core element’ of psychosocial EoL care, and to demonstrate how this core can be

upheld in the process of physical deterioration.

The model of CORE-UPHOLD therefore aims at achieving optimal personhood, which is treated as the

‘core element’ of psychosocial EoL care, during the process of physical deterioration in the context of

long-term care facilities. The model of CORE-UPHOLD is developed under the Ring Theory of

Personhood and systematic analyses of Chinese dying process at RCHS (Fang et al., 2017; Krishna &

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Alsuwaigh, 2015), which has demonstrated its merits in making sense of the psychosocial care

rendered to the dying older adults, and the construction of ‘self’ of older adults in EoL care in Hong

Kong RCHEs. Adding on the Ring theory of personhood, we are proposing that personhood shall be

defined as a construction featured as multi-dimensional (IRS, Individual-Relational-Societal) and

Multi-layered (SEE, Sensory-Emotional-Existential). The Ring Theory captures the fluid and changing

nature of ‘self’ as constructed in the deterioration of health and consciousness, which is common in

people facing the end of life. ‘Engaged and compassionate care’ is a concept extended by our research

team under the CORE-UPHOLD model to show that the ultimate goal of promoting the ‘relational

personhood’ is to prime the family carers and empower them to become the ‘personhood-proxy’ of

the dying older adult in the context of RCHEs. In the following, components of each ring are

elaborated. As refer to fig. 3, the three rings, namely individual ring (yellow), relational ring (green &

blue) and societal ring (grey), are bilaterally influencing each other, while the influence of each ring is

context- and perspective-dependent (Krishna & Alsuwaigh, 2016). Hence, interventions to promote

and sustain the preferred personhood of the dying belong to IRS, while, at the sensory, emotional

and existential (SEE) levels are to tackle barriers to the realization of the personhood as co-

constructed with the dying and the family in the context of EoL care.

The model of CORE-UPHOLD is the first attempt to develop a psychosocial care model, complimented

by protocols that aim to enhance psychosocial and existential well-being of dying person and his/her

family.

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Multi-dimensional and Multi-layered Intervention: IRS + SEE

Psychosocial interventions as guided by the CORE-UPHOLD model is found to be multi-dimensional

(IRS, Individual-Relational-Societal) and Multi-layered (SEE, Sensory-Emotional-Existential). As

identified in this study, interventions to promote and sustain the preferred personhood of the dying

belong to IRS, while, at the sensory, emotional and existential (SEE) levels are to tackle barriers to the

realization of the personhood as co-constructed with the dying and the family in the context of EoL

care.

Multi-dimensional Intervention: Individual-Relational-Societal (IRS)

The individual ring, the relational ring and the societal ring are bilaterally influencing each other

The achievement of the individual ring is supporting the development of engaged and

compassionate care

Fig. 3 Personhood and Family-oriented Care Framework

development in the “Analytical Study”

Societal Ring – care tenor, care

practitioners’ roles, professional

rules and guidelines for practice

and social-medical interface

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Individual Ring of Personhood involves (a) realization of self, (b) expression of self through verbal,

action and material forms.

a. Realization of Self – helping the individual to come to understand and ascertain his/her value

about life and death, beliefs (moral, religious and spiritual), goals of life, experienced illness

and deterioration (diagnosis & prognosis) and care preferences when death is nearing.

b. Expression of Self – to discover the personality traits and preferences of the individual and to

empower the individual to express and live out the ‘individuality’ in the care setting through

verbal, action and material means, e.g. talking, singing, going to places, eating, cooking etc.

Relational Ring of Personhood involves (c) bonding, (d) reciprocity and (e) engaged and

compassionate care.

c. Bonding with Significant Others - Attain understanding, appreciation, love and acceptance for

the dying older adult's Self (as discovered in the individual ring); continue to perform family

practices (Smart, 2011; Lau, 1981) (e.g. yum cha together, cooking, spending CNY together

etc.) and nurture caring attitudes of the family particularly when reciprocity is sabotaged by

dwindling communicability and health.

d. Reciprocity - Communication and negotiation of mutually acceptable goals (synchronization)

and preferences with trust and compassion

e. Engaged and compassionate care (priming) - involved in care, act as proxy and support care

decisions according to the Self (as discovered in the individual ring and in the process of doing

(c) and (d)) when ‘individual ring’ is shrunk to the minimal.

Societal Ring of Personhood consists of two elements, (1) people who are relevant to but not

considered as part of the relational ring of the older adults and (2) norms, roles, expectations, rules

and guidelines which exist outside the person while residing in the societal, professional or

institutional culture. In this study, the focus of the societal ring will be on (f) the care tenor -

environment, resources and culture in the RCHEs, and (g) the roles of care practitioners, rules and

guidelines for practices in the RCHEs and also (h) the social-medical interface care as adjusted to

accommodate the changing personhood of the older adult in the process of dying.

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Multi-Layered Intervention: Sensory-Emotional-Existential (SEE)

Fig. 4 Multi-dimensional and Multi-layered Intervention for Achieving Relational Personhood in End-of-Life Care

Interventions at the sensory level majorly aim at handling the deprived sense of self and hindered

reciprocity due to physical deterioration, dementia and hence low communicability. While, the

process of dying also triggers negative emotions of both the older adults and their families, including

Depression-Anxiety/Anger-Loss (DAL) and Guilt-Ambivalence-Disagreement (GAD) respectively.

Existential interventions are to relieve older adults and their families’ sense of hopelessness,

enmeshed self, and to facilitate the passing on of one’s legacy (details, please refer to Appendix IV).

SEE are categorises of practices that are to promote dignity of the dying through sustaining different

rings of personhood.

Societal Ring

(1) Assessment of residual sensory functioning,

(2) Appropriate sensory practices, and

(3) Innovating non-verbal form of communication

through sensory engagements

(1) Anticipation of possible emotions,

(2) Ventilation of negative emotions, and

(3) Promoting moments of joy

(1) Connecting to the past,

(2) Connecting to the significant others (e.g. family

and friends), and

(3) Connecting to the spiritual self

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The Seven Principles for Best Practice in CORE-UPHOLD

Common Mission / Vision:

Achieving optimal dignity of the dying older adults through honouring one’s individual and relational personhood

Foundation 1. Trust Building & Expectation Alignment – Trust building (information, intention, insistence and involvement) and alignment of expectations lay the foundation for collaboration among stakeholders. It has to start as early as the case is admitted to the end-of-life care programme, and continue in the care process with the help of continuous assessment of expectation alignment (Protocol 1).

System Integration

2. Cross-system and Cross-discipline Collaboration and Coordination – Smooth admission into the hospital, seamless honouring of Advanced Care Plan, and synchronization of understanding about the residents’ care needs and preferences across systems are important to honour the choice of the dying. It entails transparent, continuous, and on time communications among stakeholders at all stages of care. From the beginning to the end, both professional and family carers should be involved in planning, delivering and revising the care for the dying.

Care manager (professional care workers) plays a key role in completing the baseline and concurrent assessment (Protocol 1—RPCCA), provide/support Advanced Care Intervention (Protocol 2), set the expectations right for different parties for the nearing of death of the older adult, facilitate the participation of the family in the future care planning and implementation and coordinating different aspects of care by designating manpower for personalized care plans. Nonetheless, s/he is the one responsible for sorting out system barriers for ensuring seamless transitions between RCHE and hospital.

Clinical Strategy 3. Continuous Assessment – Physical, psychological, relational and existential changes feature the end stage of life where both the dying and the family inevitably need to cope with increased caring demands. IRS+SEE assessment developed in this research has to be coupled with the assessment on ‘family care capacity’ for continuous assessment (Protocol 1), so to inform targeted intervention.

4. Personalized and Targeted Intervention — Each dying older adult has his/her unique character, habits, preferences, histories and relationships, hence differing perception of quality care and quality end-of-life. Use Protocol 1 to map out the content and the degree to which the dying could live out the way s/he likes can help the practitioner devise targeted intervention (Protocol 2).

5. Early Preparation for Separation and Remembrance – Anticipation of loss and emotions that might be induced in the process of dying is important to prepare both the older adults and family carers in facing separation. This also reserve more time for the older adults and the families to produce and stock up mementos for future remembrance.

21

Care Quality 6. Training of Professional and Family Carers to Support Emerging Care Needs – Empowering both RCHE carers and family carers to perform the currently unusual/additional end-of-life care practices. Knowledge and skill trainings are critical for generating more relevant and feasible care options according to the preferences and choices of the residents in care.

7. Promote Integration of Practice and Research – Include research as part of the service development so that practice knowledge can be systematically capture for wider dissemination.

22

CORE-UPHOLD Across Time: Step Care Model in the Context of Dying and Changing Personhood

The framework of CORE-UPHOLD is summarized in this follow table to show the features of different care steps, intervention goals and protocols developed

from integrated analysis of psychosocial practices for sustaining the dying older adults’ personhood beyond the arrival of death.

STEP 1: Identifying Personhood Configuration

STEP 2: Rejuvenating Relational Personhood

STEP 3: Upholding Personhood + Legacy

Goals 1.1 Comprehensive Holistic Assessment (IRS,

SEE & family care capacity)

1.2 Identify the Threshold of Intervention for

EoL care and Aligning Care Expectations

of all parties

2.1 Maintaining and Enhancing Personhood of

the Older Adults despite Increasing Frailty

2.2 Supporting and Enabling the Family to

Engage and Provide Care (personhood-

proxy)

2.3 Empowering the RCHE to Provide

Appropriate and Sustainable Personalized

Care & Options for Dying Well

3.1 Maintaining Physical Comfort & Realizing

the Choice of the Older Adult

3.2 Keeping the Older Adult Company by the

Beloved Ones in the Last Journey

3.3 Preparing the Individual and the Family for

a Peaceful Departure and Living in

Remembrance of the Dying

Contextualized features

Frailty is experienced by nearly all cases as it is

part of the natural course of ageing. In addition

to the impact of frailty, other intersecting

factors, such as (life-limiting) illness and pace

of deterioration, attribute to the varied

degree of communicability of the older adult.

Communicability delimits the extent to which

the older adult could understand and express

oneself (I-Ring), talk to his/her loved ones (R-

Ring-Bonding/Appreciation), and communicate

and negotiate with significant others on their

care preferences and medical choice (R-Ring-

Reciprocity).

This step of care can be marked by sudden or

gradual physical deterioration and fluctuating

bodily changes. Depends on the illness or life

limiting causes, the trajectory of deterioration

can vary significantly.

Therefore, symptom and pain management

serves as the pre-requisite for supporting and

stabilising the individual ring of personhood,

and to reduce unpredictability in care hence

reserving the family care capacity for bonding,

communicating and priming oneself to be the

personhood proxy. Coordinated and integrated

medical-social care is especially critical, in this

step of care, for honouring the ‘self’ of the

older adults.

At this stage of life, older adults are usually very

frail and less able to communicate, while

family becomes the key to support the older

adults to die with dignity and quality.

Executing the care preferences, medical

choices and peri-mortem and post-mortem

arrangements as planned is a way to live out

the I-Ring of the older adults, while family

participation in care and family union around

the death bed are critical not just to

maintaining the R-Ring of the dying’s

personhood but to families saying goodbye and

recollecting the good memories they have lived

with the older adults. The latter sets the

foundation for a better grief and bereavement

process for the family. Corresponding Protocol

Protocol 1: Relational Personhood & Care Capacity

Assessment (RPCCA-Long)

Protocol 2: Relational Personhood Advance Care Intervention (RPACI)

Protocol 3: The Lasting Agenda

23

Step 1 Identifying Personhood Configuration

‘Identifying Personhood Configuration’ is characterized by holistic assessment (see Protocol 1 –

Relational Personhood & Care Capacity Assessment, RPCCA). Meanwhile, this step requires the care

manager1 to set the expectations right for different parties, including older adult, family and the

RCHE staff, so that they can be more prepared for the nearing of death of the older adult as well as

their participation in the future care planning and implementation. Alignment of expectations

nonetheless determines how far the RCHE and the family are willing to communicate and negotiate

with the older adults, so that they gradually learn to become a ‘personhood proxy’ of the dying.

Goals 1 Assessing IRS, SEE & family care capacity for devising holistic and appropriate psychosocial care

plan

Holistic assessment includes:

1.1 assessment of the individual, relational and societal ring of personhood of the older adult

(IRS),

1.2 assessment of sensory functioning, emotional distress and existential crisis (SEE), and

1.3 assessment of family care capacity & alignment of expectations

2 Identify the threshold of intervention for EoL care and aligning care expectations of all parties

2.1 Acceptance: Sensitize the older adult and the family that death is nearing, promote their

acceptance and anticipation of grief towards the nearing of death of the older adult

2.2 Orientation: Orientate the older adult, the family and the RCHE staff that the handling of

the case is to enhance comfort, this may be the preference of some residents; for some

residents who wish to sustain life at all cost, we shall honor their care preferences

2.3 Anticipation: Get the older adult and the family prepared for the possible trajectory of

deterioration and dying, and support a common vision on how to die well and identify

choices for the care decisions that have to be made in the dying process

Use of Protocol 1 This assessment has to be carried out by the care manager (who should be a professional social care

worker), well trained in understanding individuals, family dynamics and system interactions. As

1 Should be a professional care worker who plays a key role in completing the baseline and concurrent assessment (Protocol 1—RPCCA), provide/support Advanced Care Intervention (Protocol 2), set the expectations right for different parties for the nearing of death of the older adult, facilitate the participation of the family in the future care planning and implementation and coordinating different aspects of care by designating manpower for personalized care plans. Nonetheless, s/he is the one responsible for sorting out system barriers for ensuring seamless transitions between RCHE and hospital.

24

assessment is comprehensive and it covers the individual, relational and societal rings of the dying’s

personhood, extensive data collection through various means is necessary in order to conduct

accurate assessment on the configuration of the relational personhood of the dying.

For completing section 1.1 (individual and relational), mixed methods for data collection are needed,

i.e. individual interviews with the dying and the proxy/major family carer, family meeting and family

home visits. While on the part of societal, training sessions for RCHEs, bi-monthly ACP meetings, daily

interaction with the RCHEs and attending the shift handover (交更) sessions are recommended as

good sources of data to make sense of the organizational readiness and capacities for rendering

personhood-oriented intervention.

For completing section 1.2, cross-disciplinary collaboration is needed or recommended. For instance,

occupational therapist/CGAT nurses or doctors, psychologists, religious professionals are helpful

collaborators in assessing the sensory, emotional and existential status of the dying respectively. The

collaboration facilitates a fuller understanding of the sensory, emotional and existential needs of the

dying, as well as the development of feasible intervention activities for multi-layered psychosocial

care.

For completing 1.3., the assessor has to bear in mind that the realization of personhood and hence

optimal dignity of the dying depends heavily on the relationship environment where the dying is

embedded in. Mixed methods for data collection (i.e. individual interviews with the dying and the

proxy/major family carer, family meeting and family home visits) and the competence to use the data

to make sense of family dynamics, care attitudes and capacity are key to accurate assessment.

Identification of Challenges Protocol 1 is for identifying strengths and weaknesses in the personhood configuration of the older

adult, through which, we could have targeted intervention to promote a fuller realization of his/her

relational self in the setting of RCHE. Protocol 1 consists of a detailed assessment for locating and

documenting IRS-SEE needs of the older adults. Some common problems such as ‘low

communicability’, ‘enmeshed self’, ‘unaligned expectations’, ‘mismatch understandings’ and ‘low

family care capacity’ can all be identify through specific questions in the detailed assessment.

Q1.1, c – Low communicability is considered as a barrier to promoting the relational personhood of

the older adult. Assessment of residual sensory functioning (Q1.2, a) and appropriate sensory

interventions, such as food tasting, aromatic massage and playing Chinese opera, were conducted in

these cases, leading to improvement in the older adult’s sense of self (enjoyment, happiness and

continuity of personal life style), as well as in connectedness between the older adults and their

families.

25

Q1.1, j-l – Assessed enmeshed self (自己無所謂, 仔女話事就得) is another challenge encountered

as early as at the stage of admission and assessment. It was observed when older adults were invited

to talk about their own views on care and medical options, while they found it difficult to make choice

and would rather rest their decisions/choices on their children. This hampers the development of I-

Ring and reciprocity in R-Ring. However, this problem once observed was made known to the SA team

and the RCHE staff, but not addressed until Step 3 of EoL care.

Q1.1, m – Unaligned expectations/ preferences of care & Inability to carrying out chosen care are

not uncommon, such as use of feeding tube and lack of time for taking the older adult to outing

activities. These two challenges were very often identified at this stage but worked on in the next

stage of EoL care. Reserving the rights of retrieval of unaligned choice of treatment for both the older

adult and the family is important to foster mutual understanding, and even further alignment of

expectations and choice.

Q1.2, c – understanding conviction of the older adult would help construction of I-Ring. If the

answers of the older adult (Q1.2, c, i, 3) and the family (Q1.2, c, ii, 3) are the same, it is apparent that

the family has empathetic understanding of the older adult and the latter’s values and continuity of

self would be sustainable. Otherwise, facilitating effective and rational communication between the

older adult and the family will help improve development of both I and R-rings.

Q1.3 – Family care capacity is assessed to estimate the likelihood the preferred choice of care and

medical treatment can be realized and sustainably honoured in the later steps of psychosocial EoL

care. For example, taking the older adults to yumcha and comfort feeding due to rejection of feeding

tube insertion. Cases with low family care capacity will be brought into attention at this stage, and is

dealt with by volunteer visits, SA team care – (1) entering the R-ring of the older adults, to keep

him/her social connected & (2) entering the R-ring of the family carer to enhance his/her social

support for coping with care stresses.

26

Protocol 1: Relational Personhood & Care Capacity Assessment (RPCCA-Long)

1.1 Assessing the relational personhood of the older adult – Individual- Relational-

Societal (IRS) Assessment Individual (a-c)

a. Does the older adult know her/his:

i. Physical status?

ii. Diagnosis?

iii. Prognosis?

What is not known _________________________________

0. No 1. Partial 2. Yes

□ □ □

□ □ □

□ □ □

b. Does the older adult express her/his choices of care which reflect her/his

life style/personalities/values?

Choices of care:

i. Personal care (with reference to ADL assessment components)

___________________________________________________

ii. Medical care (with reference to pain and symptom management, drug

intake and hospital admission)

____________________________________________________

iii. Psychosocial care (sensory, emotional & existential comfort)

____________________________________________________


□ □ □

c. In respect to a - c above, to what extend can the older adult communicate

with:

i. Cognitive ability

ii. Expressive ability

0. Hardly 1. Partly 2. Mostly

□ □ □

□ □ □

Relational – Bonding (d-i), Reciprocity (j - l) & Personhood-proxy (m)

d. Does the older adult feel s/he is loved and cared by the key family

members?

Remarks/Reasons_________________________

0. No 1. Sometimes 2. Yes

□ □ □

e. Does the proxy/do the family members demonstrate care and love to the

older adult?

Remarks/Reasons___________________________


□ □ □

f. Frequency of visit (Adapted from 安老院舍臨終照顧實務手冊 ,

2015:34)

1. by proxy or caregiver

No. of times per week _____________________

0. No 1. Sometimes 2. Always

□ □ □

27

2. by other family members

No. of times per week _____________________

0. No 1. Sometimes 2. Always

□ □ □

g. Is the frequency of visits by the family appropriate as perceived by the older

adult?

Remarks/Reasons________________________


□ □ □

h. Is the frequency of visits by the family appropriate as perceived by the

proxy/family members?

Remarks/Reasons________________________


□ □ □

i. To what extent the family can maintain their usual family practices (e.g. feeding, cooking together, yum cha,

praying etc.) in the RCHE care routine?

1. As perceived by the older adult:

0. Hardly 1. Occasionally 2. Always

□ □ □

Problems encountered_________________________________________

2. As perceived by the proxy/family members:

0. Hardly 1. Occasionally 2.Always

□ □ □


j. Does the older adult find her/his views being able to communicate to the

proxy/family members?

Remarks/Reason___________________________


□ □ □

k. In case of conflict, does the older adult find her/himself able to ensure

her/his preferences are respected by the proxy/family members?

Remarks/Reason___________________________


□ □ □

l. Does the older adult feel able to care for the proxy/family members?

Remarks/Reason___________________________


□ □ □

m. Preparation for the personhood-proxy:

proxy/family

member clearly

understand the

care preferences

of the older

proxy/family

members have

difficulty in

accepting the

choice of the

expectations

and preferences

aligned

proxy/family

members find

themselves able

to execute the

care preferences

Reasons

28

adult older adult of the older

adult

Personal care, e.g.

daily care, feeding,

bathing, physical

exercise assistance

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

Medical care, e.g.

medical treatment

preferences

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

Psychosocial care, e.g.

religious support,

family practices,

sensory practices,

outdoor activities

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

Post-mortem

arrangement, e.g.

funeral, burial

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

0. No

□

1. Partial

□

2. Yes

□

Societal - the environment, resources and culture (n-q); roles of care practitioners, rules and

guidelines for practices (r-t)

n. To what extent is the organizational atmosphere supportive of learning carrying out preferred personalized

care? (by observation and/or asking frontline care workers)


□ □ □

29

Problems encountered__________________________________________

o. To what extent is the organizational atmosphere supportive of flexibility in carrying out preferred personalized

care? (by observation and/or asking frontline care workers)


□ □ □


p. To what extent does the RCHE have enough environment/resources to carry out the additional personalized

care options preferred (preferred care) by the older adult? (by observation and/or asking frontline care

workers)


□ □ □

Problems encountered__________________________________________

q. Are there designated persons in the RCHE to take up the responsibility to

befriend, make close observation & deliver the preferred daily care of the

older adult? (with reference to the different types of care preferences,

question (b), e.g. Playing Chinese opera CD/DVD, sunbathing, walking etc.)

Remarks/Reason___________________________


□ □ □

r. Are the instructions/guidelines for the delivery of preferred care clear

enough for the frontline workers?

Remarks/Reason___________________________


□ □ □

s. Are the instructions/guidelines for the delivery of preferred care

operational enough for the frontline workers?

Remarks/Reason___________________________

May be to streamline & combine sand t as “clear and operational

enough”, the importance is problems encountered & easier to

answer as one question


□ □ □

1.2 Assessing sensory functioning, emotional distress and existential crisis

experienced by the dying – Sensory-Emotional-Existential (SEE) Assessment

a. Sensory practices and functioning – (for preferences, to check with the family if necessary)

i. Hearing –

The older adult’s preference of music or other hearing comfort to be played (e.g. Canton pop,

Chinese opera, prayers, hymns, nursery rhyme and family talk): (1)______________

(2)______________ (3)______________

30

I. Effectiveness in improving the older adult’s sense of self (enjoyment, happiness and

continuity of personal life style)

0. No □ 1. Sometimes □ 2. Yes □

II. Effectiveness in connecting the older adults and their families


ii. Taste –

The older adult’s preference of taste and food (e.g. Candies, sweet soup, sesame roll, biscuits, milk tea,

jelly and ice-cream): (1)______________ (2)______________ (3)______________






iii. Vision –

The older adult’s favourite photos/pictures/DVD (e.g. Family photos, religious pictures, Cantonese

movies and Chinese opera): (1)______________ (2)______________ (3)______________






iv. Smell –

The older adult’s favourite smell (e.g. Flowers, herbs and food):

(1)______________ (2)______________ (3)______________






v. Touch –

Suitable for or required by the older adult (e.g. Massage, applying cream and cleaning mouth/

face/body): (1)______________ (2)______________ (3)______________



31




vi. Movement –

After assessment of palliative performance (安老院舍臨終照顧實務手冊, 2015:33), preferred

activities can be arranged for the older adult (e.g. Walking around, standing, sitting, sunbathing

and going out to garden): (1)______________ (2)______________ (3)______________






b. Emotions of both older adult and the family (in addition to items referencing 安老院舍臨終照

顧實務手冊, 2015:35) –

i. Older adult

1. Negative emotions: not at all/barely moderate serious/severe

Depression

□ 1 2 3

Anxiety

□ 1 2 3

Anger

□ 1 2 3

Sadness

□ 1 2 3

No control

□ 1 2 3

Helplessness

□ 1 2 3

Uselessness

□ 1 2 3

Hopelessness/

Desperate

□

1 2 3

Bargaining

□ 1 2 3

32

Denial/ Unacceptance

□ 1 2 3

Isolation

□ 1 2 3

Triggers of negative emotions: ____________________________________

Pacifiers of negative emotions: ____________________________________

2. Positive emotions:

Joy

□

Happiness

□

Being Excited

□

Satisfaction

□

Acceptance

□

Other emotions _____________________________________________________

Not able to answer □

ii. Family

1. Negative emotions: not at all/barely moderate serious/severe

Depression

□ 1 2 3

Anxiety

□ 1 2 3

Anger

□ 1 2 3

Sadness

□ 1 2 3

No control

□ 1 2 3

Helplessness

□ 1 2 3

Uselessness

□ 1 2 3

Hopelessness/

Desperate

□

1 2 3

Bargaining

□ 1 2 3

Denial/ Unacceptance

□ 1 2 3

33

Isolation

□ 1 2 3

Triggers of negative emotions: ____________________________________

Pacifiers of negative emotions: ____________________________________

2. Positive emotions:

Joy

□

Happiness

□

Being Excited

□

Satisfaction

□

Acceptance

□

Other emotions _____________________________________________________

Not able to answer □

c. Existential crisis - Articulation and construction of self by the older adult & Empathetic

understanding of the older adult by the family (value on care, value on death and continuity of

self of both older adult and the proxy) (adapted from 安老院舍臨終照顧實務手冊, 2015:36)

i. Older adult

1. Religion：

□No □Christian □Catholic □Buddhist □Islamic

□Japanese Shinto □Traditional Chinese/Taoist □

Others________________

2. View on relation between own religion and terminal illness:

□Giving power □Giving peace □Helping treatments □Punishing □Meaning in

suffering

□God being unfair □No relation □Not able to answer □Others________________

3. Older adult’s spiritual belief: Up to this stage of life, what do you think about the current

situation?

□Disturbed □Suffering □Shame/Guilt □Unacceptable □No choice/Just

take it

□Acceptance □Not able to answer □Others____________________

4. Where do you think people would go after death?

□Eternal life/Heaven □ Pure Land/ Paradise (Shkhavati) □Reincarnation

□Like a light off □Don’t know □Never thought of that □Not able to

answer

□Others _________________________

34

5. What do you think about your

life?

0

Totally

disagree

1 2 3 4 5

Totally

agree

a. Satisfied

b. No regret

c. Living a good one (不枉此生)

6. What’s your view on life and death?

________________________________________________________________

7. What can we do to help you complete your life with no regret?

________________________________________________________________

ii. Family

1. Religion of the older adult：

□No □ Christian □Catholic □Buddhist □Islamic

□Japanese Shinto □Traditional Chinese/Taoist □Others________________

2. The family member/major caregiver has same religion as the older adult.

□Yes □No - Please choose below:

□No religion □ Christian □Catholic □Buddhist □Islamic

□Japanese Shinto □Traditional Chinese/Taoist □Others________________

3. Family member/major caregiver thinks that the spiritual distress/relief of the older adult is:

□ Disturbed □ Suffering □ Shame/Guilt □ Unacceptable □ No choice/Just

take it

□ Acceptance □ Not able to answer □Others____________________

The above answer is same as the older adult.

□Yes □No_____________________________________

4. What can we do to help you (family carer) and the older adult to complete his/her life with

no regret?

_________________________________________________________________

1.3 Assessing the family care capacity – attitude towards caregiving, care dynamics

35

and practical capacity for actual care delivery

a. Family decision making pattern

Collective Independent

□ □

b. Besides the proxy, how often can other family members share the role of caregiver?

Rarely Sometimes Often

□ □ □

c. Family dynamics

Conflicting Harmony

□ □

d. Proxy/family member’s availability of to carry out preferred care chosen by the older adult.

Low Average High

□ □ □

e. Proxy/family member’s ability to carry out preferred care chosen by the older adult, i.e. physical

strength, skills, caring attitude etc.

Low Average High

□ □ □

f. Proxy/family member’s ability to understand the diagnosis and prognosis

Low Average High

□ □ □

g. Proxy/Family’s understanding/knowledge about the care preferences of the older adult

No Shallow Deep

□ □ □

h. Attitudes of family members towards the nearing of death of the older adult – Anticipatory grief,

change of behaviours and responses to ‘bad news’

Uncertain Reactive/denying Accepting/calm

□ □ □

i. Genogram - mapping family structure including following details (to help understand options

and challenges for caregiving from the family):

1. Members in both extended and nuclear family of the older adult

2. Relationships between the older adult and key family members

3. Annotations include

boundary issues – such as enmeshments, overburdened individual, under-benefitted

individual

resource issues – such as poverty, immigration, acculturation

geographic dispersion

36

4. Fictive kin – nonrelatives who function as family, e.g. close friends, neighbours, members

of a religious congregation, co-workers

Example of a basic genogram (Qualls & Williams, p.111):

j. Role Map of the major family caregiver (to help understanding of caregiver’s role strains and

evaluate care capacity to the older adult)

Example of a Role Map (Qualls & Williams, p.151):

Extra reference on assessing caregiver capacity:

Caregiver Reaction Scale

Qualls, S. H. & Williams, A. A. (2013). Caregiver Family Therapy: Empowering Families to Meet

the Challenges of Aging. Washington, DC: American Psychological Association. Appendix A

37

Step 2 Rejuvenating Relational Personhood

Cross-system and cross-disciplinary collaboration and coordination underpin the success of this step

of care. Rejuvenating relational personhood requires proper pain and symptom management,

nonetheless, realization of medical treatment and personal care choices. Psychosocial care

practitioners, in the capacity of a care manager, should facilitate communication and collaboration,

so that dying can be a smoother and peaceful process for the dying and the family.

Goals

1 Maintaining and enhancing personhood of the older adults despite increasing frailty

1.1 Soothing and disarming the older adults from physical discomfort

1.2 Boosting and energizing the “self” through SEE intervention – sensory engagement, emotional

ventilation and making meaning of the dying experience

1.3 Facilitate and enhance (Individual Ring of Personhood) self-articulation of values, beliefs, and care

and treatment preferences in the presence of the family

1.4 Handle emotions of both the older adult and the family arising from the process of end-of-life

care (Appendix I)

2 Supporting and enabling the family to engage and provide care

2.1 Enabling the family to bond with the older adult (finding the connection points despite minimal

communicability)

2.2 Enabling the family to communicate with the deteriorating older adult

2.3 Empowering the family to understand and agree on an Advance Care Plan (ACP) and burial

arrangements as preferred by the older adult Carrying out the agreed chosen care

2.4 Empower the family to anticipate, prepare and handle emotions and logistics while going through

frequent hospitalization, signing AD and medical interventions in the dying process

3 Empowering the RCHE to provide sustainable personalized care & options for dying well

3.1 Modification of care environment and care protocols for dying well

3.2 Flexible but sustainable provision of additional and personalized care for dying older adults

3.3 Facilitate and pre-plan smooth care transitions through integrating and coordinating medical and

social care systems

Use of Protocol 2 Expected Challenges

To rejuvenate the relational personhood of the dying, Protocol 2 (Relational Personhood Advance

Care Intervention, RPACI) is developed to support social care practitioners for maintaining the older

38

adults’ self-expression, bonding and communication with the family and people around. It is also for

preparing the family carer to become a ‘personhood proxy’, so that they could carry out care as

preferred and reflective of the personhood of the dying older adults. Alongside deterioration and

dying, family participation in care and in collecting mementos in understanding the values,

preferences, beliefs, histories, relationships, achievements etc. that characterise the dying is critical

for sustaining and securing the personhood of the older adults through care arrangements and

decisions. Rather, organizational barriers for achieving personalized care are more fully explored in

‘An Analytical Study on the Four Medical-Social Partnerships in Providing End-of-Life Care in the

Residential Care Homes’ and papers published out of the same project (Fang, Lou & Kong, 2016; Kong,

Fang & Lou, 2016) (see also p.7).

Guided by the Seven Principles for Best Practice, Psychosocial practitioners should use Protocol 1 to

assess relational personhood & care capacity, so as to locate areas where special interventions are

needed. Protocol 2 is a matrix for locating good mechanisms/activities which are found to have

helped solving challenges identified by Protocol 1. Good practices/clinical skills employed for

executing those mechanism/activities in the matrix are detailed in ‘The 9-Grid Square for Achieving

Relational Personhood: Good Practices/Skills’ (p.42, item 3). Low family care capacity, if identified

through Protocol 1, is usually resolved by enhanced support and services by the SA team or drawing

on the help of volunteers.

In ‘the 9-Grid Square for Achieving Relational Personhood : Good Practices/Skills’(p.42), there is a

9-grid square on the right edge, for showing the scope of application of a particular technique/skill

in tackling problems as identified with Protocol 1 and located by the 9-grid table of Protocol 2.

Narrative techniques and Caregiver Family Approach are observed in the analysed cases. The former

is found to have supported self-articulation, expression, communication and even reciprocity by

recognizing each other’s contribution in making each other happy; while the latter helped us see how

psychosocial care practitioners attend to the sense of burden of the proxy and the dynamics of the

family in adjusting to the increasing care challenges. For emotional and relational distresses identified

in both the dying and the family member, page 44 item 7 gives details about practices for handling

them.

It is expected that changes on IRS, SEE, and care capacity can be changed from time to time,

Relationship Personhood & Care Capacity Assessment (RPCCA-Short) is recommend (Appendix V).

39

Protocol 2: Relational Personhood Advance Care Intervention (RPACI)^

Individual Relational Societal

RCHE Medical/Social Interface #

Sensory

• Sensory stimulation/ practices (FOOD and Entertainment) for self-realization

• Pain and symptom relief

• Promote family-older adult communication through sensory practices/engagement (Innovating non-verbal engagement methods)

• Family conferences/ ACP meetings for realizing sensory practices in routine care

• Providing extra manpower and resources to trigger practice changes to support additional and personalized EoL care in RCHE

Emotional

(see 9 Grid Practices) • Individual sessions: (i) anticipate the loss

of self and (ii) ventilate the distresses and/or (iii) acknowledge/resolve the negative emotions induced by the dying process – Depression-Anxiety/Anger-Loss (DAL)

• Practices devised to promote positive emotions – Joy-Content-Tranquillity (JCT) , e.g. Sensory practices liked by the older adults, loved activities, family practices etc.

(see 9 Grid practices) • Individual sessions with the proxy: (i)

anticipate the grief, loss and caring burden, (ii) ventilate and/or (iii) acknowledge/resolve the negative emotions induced by caring in the dying process – Guilt-Ambivalence-Disagreement (GAD)

• Practices devised to promote positive emotions – Joy-Content-Tranquillity (JCT) [e.g. Family gathering for cooking together or bible reading group in the RCHE)

• Palliative care room with flexibility and appropriate facilities for recreating family practices, and with appropriate distance from the other older adults

• Trained manpower and extra resources/ programmes for promoting moments of joy

• Building partnership with care home staff members and family carers to recreate intimacy practices in RCHEs

On

site C

GA

T visits

(ne

gotiatin

g pa

lliative care

pro

vision

in

the

con

text of R

CH

Es)

- Exte

nd

ing ge

riatric assessm

en

t to fin

d o

ut

(1) resid

ual se

nso

ry fun

ction

ing, (2

) care

capacity o

f family an

d p

roxy an

d (3

) staff su

pp

ort o

f con

tinu

ou

s senso

ry

engagem

ent

- Fam

ily con

fere

nce

s for n

egotiatin

g su

stainab

le pro

vision

of m

om

ents o

f

joy/p

sycho

social care

- Eo

L care train

ings fo

r RC

HE staff

Ad

vance

Dire

ctives + A

CP

(o

ngo

ing re

view

in re

spo

nse

to

ph

ysical and

em

otio

nal

chan

ges)

- Fam

ily con

fere

nce

s for

nego

tiating m

edical treatm

ent

op

tion

s(DN

AC

PR

, AD

etc.) that

reflect the p

references an

d

values o

f the d

ying &

for

han

dlin

g of d

ifferen

t

expectatio

ns am

on

g

stakeho

lders

40

Existential

• Life review – connection the ‘person-in-time’ and the ‘person-in-relationship’ (Narrative Techniques, see p.40)

• Last wishes – expressed and materialized

• Religious support

• Life review – promote appreciation (enabling the family to understand the older adult’s preferred narratives of life) and ‘Re-Membering’ with the older adults when they miss him/her (living on with the legacy (Narrative Techniques, see p.41)

• Family gathering: saying the last words/expressing appreciation or confession/’saying’ goodbye (see also Caregiver Family Approach, p.43)

• Family conferences for reconfirming/making urgent decisions on PC room/hospital admission, the care for the last few days and post-mortem arrangements, in line with the wishes of the older adults

• Palliative care room that allows flexible visitation, family life practices and creation of (relative) positive memories of the dying moment, e.g. singing folk songs, skype calls, massage, comfort feeding etc.

^ In this report, clinical practices/skills for conducting activities listed in the above 9-grid table are documented in ‘the 9-Grid Square for Achieving Relational Personhood: Good Practices/Skills’ (p.42). On the right edge of the ‘the 9-Grid Square’ document, a corresponding 9-grid table is inserted to represent the applicability of those practices/skills in resolving challenges and in supporting activities as located by Protocol 2: Relational Personhood Advance Care Intervention. # Medical-social interfacing should happen at both institutional and practice levels. Emerging good practices of medical-social collaboration are innovative solutions for systemic gaps, while they should be acknowledged and even formalized to increase sustainability of those practices. Formalization could direct proper resources (re)allocation and support development of common vision on what should be done to improve medical-social interface in end-of-life care. ‘Clinical admission’, ‘outreach medical/psychosocial support’, ‘family conference’ and ‘multidisciplinary ACP meeting’ are the mechanisms/activities involved in making institutional changes in care routine and tenor, nonetheless, in facilitating a better medical-social interface in major cross-system practices – ‘CCAT/ PC doctor visits – onsite palliative care support’, ‘signing Advance Directive’ and ‘transitions to hospitals’. These two areas of work if conducted properly can help maximizing the space for personhood-focused and family-oriented psychosocial end-of-life care. For example, by stabilizing and managing the physical conditions of the dying older adults, through ‘onsite palliative care’, more personalized activities and visits could be planned and realized, despite inevitable bodily fluctuations. Nonetheless, in situations where ‘what is the best interest of the older adults’ is unclear/diversely understood, multidisciplinary ACP meetings could help deliberate and reach consensus on best care (see the red box in the graph). ‘Outreach medical/psychosocial support’ and ‘clinical admission’ could ensure that the best interest of the dying older adults can be continuously achieved when any of the care systems is experiencing reduced care capacity (see NAAC01).

Transitio

n to

Ho

spitals

- C

linical A

dm

ission

: pain

and

symp

tom

relief

and

necessary tre

atmen

t to p

rom

ote

com

fort, sm

oo

ther p

rocess o

f ho

spitalizatio

n

and

better en

d-o

f-life care enviro

nm

ent,

respectin

g the ch

oice o

f DN

AC

PR

and

w

ithd

rawal o

f selected life-su

stainin

g

treatmen

ts

- M

ultid

isciplin

ary AC

P m

eetin

gs for

com

mu

nicated

transitio

ns an

d in

form

ed

decisio

n m

aking, sp

ecial attentio

n to

info

rmatio

n exch

ange o

n p

ost-d

ischarge care

-

Familiarizin

g the

family w

ith th

e lo

gistics

for see

ing th

e o

lde

r adu

lt the

last time

41

The 9-Grid Square for Achieving Relational Personhood: Good Practices/Skills

1. Sensory stimulation/practices Step 1: Identifying Personhood Configuration

Identification of residual sensory functioning – Hearing, Taste, Vision, Smell

and Touch & Movement - to devise sensory practices suitable for the older

adults

Extending geriatric assessment to find out (1) residual sensory functioning, (2)

care capacity of family and proxy and (3) staff support of continuous sensory

engagement


Reinforcing the sense of self through enjoyable sensory stimulation

Family involvement in sensory soothing, to communicate bonding and reciprocity

Personalized care protocols incorporating sensory care needs

Step 3 Upholding Personhood + Legacy

Translation of residual functioning into realization and expression of self, and

social connection points –Practices of sensory stimulation/ satisfaction

For example,

Hearing – radio broadcast, nursery rhymes, Cantonese old pop songs,

Chinese opera, hymns, prayers.

Taste – lollipops, desserts (sesame cake, jelly), sweet biscuits

Vision – Chinese opera, TV shows, movies

Smell – flowers, scented oil

Touch – massage, putting on hand cream, using towel to wipe face,

cleaning mouth, sunbathing

Movement – walking, standing, going out to the garden

Family conferences for realizing sensory practices and future upholding of

personhood when death of the older adult is imminent

2. Narrative techniques with older adults and family Step 1: Identifying Personhood Configuration

Narrative techniques with older adults and family—realization and expression of self

through exploring illness experiences, care preferences and treatment options;

facilitate empathetic understanding of the elder including choice of burial

arrangement, care preferences and treatment

Value on Care –by care preferences and treatment options

Value on death – by burial arrangement and religion

I R S

S

E

E

I R S

S

E

E

42

Continuity of life– by Family Life Review


Narrative techniques with the older adults: realization and expression of self

through exploring illness experiences, care preferences and treatment options;

facilitate empathetic understanding of the elder including choice of burial

arrangement, care preferences and treatment

Illness experiences : Not knowing comparing care and illness experiences

scaffolding the preference and values about care options soliciting preferred

care and medical treatments

Achievement in life : Exploring person-in-time connecting the past to the

achievement at present

Religious self: Exploring his/her religious beliefs (through observation)

Relating his/herself to the religious practices e.g. advantages and impact

Supporting the elder to explicate the religious beliefs to the proxy/carer (e.g. 你

乜乜咁睇, 你又覺得點呢?)

Social self: exploring moments of being with the family (such as yumcha with

children) making sense of how the older adults perceive themselves in

relation to their family members (person-in-relationships)

Concept of death: Views about death medical treatment and burial

preferences

Articulation of life enjoyment: food, songs etc.

Narrative techniques with family— facilitate empathetic understanding of the elder

including choice of burial arrangement, care preferences and treatment

Value on Care – by making sense of the older adult’s care preferences and

treatment options

Value on death – by making sense of the older adult’s burial arrangement and

religion choice

Continuity of life/ Upholding legacy – by participating in the Life Review process


Reflective space for the family/significant others – identify and handle unfinished

relational issues

talking to the elder and express gratitude/reconciliation and revealing hidden

information

for the family/significant others to recollect the memories about the dying older

adults for buffering the impact of the loss

43

3. Caregiver Family Approach in EOL care Step 1: Identifying Personhood Configuration

Understanding, appreciation and support in sustaining the personhood of the

dying elders

Continuity of social self – by Family Gathering (festive food preparation)

Supporting the provision of enjoyment/ creation of moments of joy by the family

carer


Anticipating grief and life after departure

Continuity of social self – by Family Gathering (festive food preparation)

Supporting the provision of enjoyment/ creation of moments of joy by the family

carer


Reflective space for the family/significant others – identify and handle unfinished

relational issues

talking to the older and express gratitude/reconciliation and revealing hidden

information

for the family/significant others to recollect the memories about the dying older

adults for buffering the impact of the loss

4. Techniques for Life Review Step 2 Rejuvenating Relational Personhood


This is to facilitate bonding between the older adults and the significant others

Carried out alongside residential care home visits (with and without the presence

of the family) aided by narrative techniques

Ended with a ‘ life journey sharing ’ (family gathering) where his/her

significant others, including family members, friends, former colleagues and

resident friends in the RCHE, are invited to share and contribute to the

construction and affirmation of the preferable ‘self’ as previously co-created by

the older adults and the social work practitioner

5. Caregiver Family Approach/Interactions with Family Step 1: Identifying Personhood Configuration

I R S

I R S

I R S

S

E

E

S

E

E

44

Individual meeting with the older adult and family conference are simultaneously

used in most of the case, so that the personal views of the older adult can be

sufficiently explored

For dealing with unaligned expectations and care preferences should be identified

in advance of the family conference

Key Steps:

1. (Individual meeting with the older adult) Individual articulation of

expectations and views about EoL care

2. identification of differences in views and expectations

3. (family conference) support the elder to express his/her wishes in front of

the family + elder-focus conversation initiated in the family meeting

4. provide relevant information for making decisions on unaligned choices

5. materializing (translating ideal care wishes into practical options

6. concretizing options by signing relevant documents

7. assuring by supported care delivery

For disseminating information and cultivating common understanding about the

possible dying trajectories, and the emotional changes that might involve

Key Steps:

1. Rehearsing the trajectories of deterioration and implications for care with

both the older adults and the family

2. Informing the older adults and the family about the possible care and

transition pathways of the last few days of care


communication and reciprocal exchange among the older adults, families and

the social work practitioner

Key Steps:

1. aligning expectations and preferences upon the ACP

2. assessing the extent to which the families are able to carry out the agreed

care and the support needed for carrying out the chosen care

3. determining the care support/resources/knowledge/skills needed for the

family members to perform the chosen care as agreed in the family

conference


Consensus building among family members on peri-mortem and post-mortem care

Key Steps:

1. enhancing the family’s knowledge of treatment methods

2. facilitating informed deliberation about unaligned treatment decisions among

S

E

E

45

family members

3. sharing responsibility among family members and/or employing extra

carers/private nurse to handle intensive care activities

4. arranging meet-up with funeral services to prepare for (In case of dying in

RCHEs) the handling of body and issuing of death certificate and ( for all cases)

funeral and burial arrangements

Creating reflective space for the family/significant others to identify and handle unfinished relational

issues

6. Bimonthly Multidisciplinary ACP meeting: Assimilating all the personal choices in care and medical treatment to the

organizational structure and routine

the ACP is disseminated to RCHE staff members of ALL LEVEL, so that all staff

understand the personalized care plan for the dying older adults and could

perform their care accordingly

Identifying and communicating difficulties in performing the personalized care as

agreed in the ACP, so as to facilitate innovative solutions developed by

multidisciplinary stakeholders

7. Emergent Emotional and Communication Barriers and

Correspondent Intervention Strategies Step 1: Identifying Personhood Configuration

Identifying and acknowledging emotional distress of the older adults arising from the

experience of illness and treatment,

nearing of death and

relationship with significant others

Identification of negative emotions of the family arising from the

(i) experience of caring for the dying,

(ii) nearing of death of the beloved one and

(iii) family conflicts


Key strategies for ventilating, relieving and resolving the negative emotions & other

barriers

Practices devised to promote positive emotions – Joy-Contempt-Tranquillity (JCT)

(see Appendix I)

Identify informal/formal emotion support network (friends, confident) in the care

home to ensure older adults are socially connected

I R S

I R S

S

E

E

S

E

E

46

Communication and negotiation of care tenure across care systems to ensure

realization of preferred care reduce emotional distresses

Challenges Intervention Strategies

a. Lack of control & autonomy/

Sense of helplessness

Increase knowledge of diagnosis and treatment options

Encourage expression of wishes to the doctor

Realizing personal preferences in RCHEs

Encouraging dispersal of responsibility of self-care to family

members and care home staff members

b. Sense of uselessness Building positive self-concept –

enhancing knowledge of diagnosis and self-perception of

physical condition acceptance of self affirming :

rebuilding positive sense of self through acknowledging

valuable personal qualities/strengths (for example, diligence,

volunteer work and perseverance)

c. Enmeshed self Divert other-focus conversations to self-focus conversations

– elder to understand and express self in choice of burial and

religion.

d. Anger Empathetic understanding

e. Self-blames Externalizing the problems (你咁樣都係因為乜乜乜啫)

Normalizing the lack of self-care knowledge in childhood (小

時候未懂得如何保重身體是正常的)

f. Depressive mood/ sadness Recalling/recollecting the source of happiness, such as

family life

Unique outcome – 你平時成日話點點點點, 其實你都有

做乜乜乜呀!?

Normalizing the sadness – 你因為乜乜乜而唔開心, 都係

好正常

g. Delusion/Hallucination N/A

h. Fear of hospitalization Seeing/Being accompanied by family members

i. Miscommunication with home

staff

Suggesting objective observation and expression of thoughts

to home staff

j. Unprepared nearing of death

(family opt for life-sustaining

treatment after signing up for

the EoL care programme)

Breaking the bad news by doctor Assisted understanding

of the trajectory of the illness development explicating

the prognosis

47

k. Unaligned understandings

Religion

Assisted understanding of the trajectory of the illness

development (by doctor)

Family meeting for the expression of beliefs and preferences

in front of the family

Identify disengaged religious care practices (no forced

engaged care) introduce flexible and middle ground care

practices to relieve the tension between the family member

and the elder (e.g. engaged care performed by the RCHEs)

facilitated expression of resident’s preferences/beliefs in

front of the key carer expression of preferences/beliefs in

front of the other active family members (family meeting)

Treatment preferences Sharing of elderly home and program doctor’s experience for

family’s reference of decision making

Updating communication among family members

l. obscured communication among

family members (usually

assumed)

Overt and rational communication

m. Declining caring capacity Enhancing literacy of care: innovating care through sensory

engagement

n. Mutually reinforced

hopelessness

Improving the family’s understanding of needs of the elder

decreased carer’s sense of helplessness and carer’s burden

Cushioning sense of helplessness –religion

o. Resistance to collaborate with

the care team

Creating pressure-free meet-up with key carers


Family Meetings to ensure family members are well supported by significant others/social care

practitioners

Reliving the lovely memories with the older adults (e.g. singing together the old folk songs

sung to them by the older adult years ago, great time spent together, childhood memories with

the older adults)

Remembering the older adults (e.g. generosity, loving and caring personality) so to live on with

their legacy

48


At the last day of a dying process, medical intervention for pain and symptom control as well as

handling and monitoring of body fluctuations remain to be essential, particularly for enabling the

older adults to stay in the RCHE as long as possible. On top of these, honor the lasting agenda would

be equally important from a psychosocial perspective.

Goals & Objectives 1. Maintaining physical comfort & realizing the choice of the older adult

1.1 Consistent and quality pain and symptom control, and keeping the dying older adults in RCHEs

as long as possible

1.2 Smoothing the hospital admission pathways to enhance comfort and ensure care choices are

respected

1.3 Honouring the wishes and (medical, spiritual and post-mortem) choice of the older adults in the

presence of family members/significant others

2. Preparing the individual and the family for a peaceful departure and living in remembrance

of the dying

2.1 Assuring the family that wishes and choice of the older adults are sufficiently respected and

honoured in the process of care (dealing with sense of guilt)

2.2 Bringing the family care for the dying to a proper closure (letting go);

2.3 Leaving materials/resources for the family to remember the dying loved one (dealing with sense

of loss, by making the older adults live in remembrance of the living ones)

3. Accommodating care tenor, providing person-centered, co-ordinated care across systems and

honouring the wishes of the dying older adults

3.1 Empower the RCHE with appropriate physical space and care flexibility to accommodate the

extended presence of family in the last days of life of the older adults

3.2 Reducing and managing the disruptions caused by transitions of care to hospital

3.3 Support to proxy in making final EoL decisions that honour the wishes of the dying older adults

Use of Protocol 3 and Expected Challenges In this step of care, the role of the social work practitioner (care manager) is expected to honor the

lasting agenda for both the patient and his/her family. The care manage is to ensure that the families

are able to cope with the loss of their loved one, particularly for those who are ‘enmeshed’ with the

dying older adults, the social work practitioner should assess the R-Ring of the family members. It is

to assess the availability of ‘buffer for the sense of loss’, for example, support in the relational ring of

the family members including siblings, spouses, children, friends and church members. In case of

49

small R-Ring of the family member, ‘entering the R-ring of the family carer’ or enhancing religious

support as cushion for loss can be implemented to relieve the situation.

Nonetheless, facing departure is the most challenging in this step of care. Poorly managed departure

can accentuate the sense of guilt and sense of loss, which could lead to depression and other long-

term psychological problems. While, facing departure does not happen in the last few days, but as

early as when the practitioner breaks the bad news because anxiety, sense of guilt and sense of loss

require sufficient time to be dealt with.

Good practices are identified by family carers: (1) rehearsing the trajectories of deterioration and

implications for care, (2) participating in family meetings to discuss and plan for the departure, (3)

fulfilling the last wishes of the older adults and finishing the unfinished business between the dying

and the family, and (4) keeping a good stock of memories with the older adults through life review,

photos and videos of family activities and memoirs. Family members love retrieving the fond

memories/stories and the life review when they miss the diseased older adults.

50

Protocol 3: The Lasting Agenda

In this step of care, individual ring of the dying usually dwindles to the minimal (very low physical

functioning and communicability), resulting in an emphasized focus on family intervention. At the last

stage of life, intervention rendered to the dying older adults is majorly sensory-based, while

interventions for resolving challenges presented by the family are more wide-ranging. The ultimate

aim of the intervention is to uphold the personhood of the dying until the last moment of life, and

one’s legacy beyond death.

IRS+SEE Challenges/ Needs Practices

Older Adults (I-Ring)

Sensory (with proper pain and symptom management & hydration)

Minimal Communicability Comfort feeding

Aroma massage

Playing family conversations & songs

s/he likes

Decorating the PC room with

familiar/personal ornaments e.g.

cross, pictures etc.

Emotional/Existential Facing departure– nurture

peaceful emotions

Should start as early as when the

practitioner breaks the bad news as it

requires time to be dealt with

Anxiety/ fear Religious practices and decorations

Pastoral support – meaning of life &

death, spiritual preparation

Company of significant others

sense of loss

Family (R-Ring)

Sensory Personhood Proxy Execute the care preferences chosen

by the older adults

Make care decisions and

arrangements that can reflect the

individuality of the dying older

adults

Emotional

Facing departure – bonding &

living in memory

Should start as early as when the

practitioner breaks the bad news as it

requires time to be dealt with

Ambivalence Family conference (mutual support

and care)

Anticipatory grief and support in

decision making

51

Emotional/

Existential

Reiterate the wishes of the older

adults with the help of ACP/life

review materials

sense of guilt Participating in family meetings to

discuss and plan for the departure

Fulfilling the last wishes of the older

adults and finishing the unfinished

business between the dying and the

family

Depression Becoming part of the proxy/carers’

social support network

Anxiety Rehearsing the trajectories of

deterioration and implications for

care

sense of loss Keeping a good stock of memories

with the older adults through life

review, photos and videos of family

activities and memoirs.

Emotional/

Existential

Enmeshed self with the dying

older adults

The role of the social work practitioner

(care manager) is to ensure that the

families are able to cope with the loss of

their loved one

Assess the R-Ring of the family

members

Assess the availability of ‘buffer for

the sense of loss’, for example,

support in the relational ring of the

family members including siblings,

spouses, children, friends and

church members

In case of small R-Ring of the family

member, social care practitioners

(care managers) as the proxy/carers’

social support network or enhancing

religious support as cushion for loss

RCHE (S-Ring)

Sensory Intensive Pain and Symptom

Management

PC room (equipped with essential

machines for monitoring vital signs)

52

Monitoring of vital signs

Frequent PC doctor visits

Extra manpower for nursing care

(registered nurse) Management of

symptoms at death with online or

on-site support from CGAT

Cross-System Collaboration (S-Ring)

Care transition Accidental drop of care

capacity e.g. annual

maintenance, lack of

manpower etc.

Collaboration with CGAT EoL

care/hospice service to enable

seamless personalized care

Planned hospital admission to

ensure continuity of chosen care

across systems

Living in RCHE and dying in

the hospital

Clinical admission if possible

In case of non-nursing home

settings, pre-planned and rehearsed

transition to the hospital when

death is imminent is necessary

(training and guidelines should be

prepared for care home staff &

family members should be

empowered to manage dying

symptoms and honour the peri- and

post-mortem preferences of the

dying across systems)

53

CONCLUSION

1. CORE-UPHOLD is a cultural-sensitive evidence-based psychosocial social care model

developed to guide EoL care in RCHEs. Not only the individual self but also relational self are

profoundly nurtured and empowered through clinical skills which are distilled from practice

data and enriched by compatible narrative therapy and family intervention practices. CORE-

UPHOLD is believed to be the first theory-driven protocol that aims at improving medical-social

integration and early psychosocial end-of-life care in Hong Kong. Moreover, CORE-UPHOLD

emphasizing Identifying and utilizing strengths at individual, family, friends, and institutional

level. A broader perspective of the older adult’s family would help draw strengths in

maintaining I-Ring and expanding R-Ring. For example, connecting with relatives other than

nuclear family members and “fictive kin” such as close friends, neighbours, co-workers, etc.

The applicability of the model CORE-UPHOLD is currently limited to cases which are with

relatively high family care capacity and readiness to participate in end-of-life care due to the

screening process of cases at both the ‘project admission’ and ‘case selection’. When it is

applied to ‘difficult/challenging’ cases, such as singleton, high-conflict families and older adults

with psychiatric problems, further research is needed to look into the applicability and make

necessary modifications to fit the features of cases uncovered by this study. However, this study

has benchmarked the optimal psychosocial intervention that can be carried out in RCHE-based

end-of-life care in Hong Kong.

2. The 3-step process, orientated around IRS-SEE, provides well defined principles and protocols

that EoL practitioners can follow to achieve optimal dignity at the end-of-life stage of

institutionalized older adults. ‘Step 1 Identifying Personhood Configuration’ and ‘Step 2

Rejuvenating Relational Personhood’ can be carried out more successfully with higher

communicability. Hence, older adults who are affected by dementia or are susceptible to

physical conditions that lower their communicability should start CORE-UPHOLD earlier than the

last 6 months of their life.

We believe that the 2-step process will contribute to promote the integration of psychosocial

ACP and the medical ACP to deliver holistic end-of-life care for the older adults living in RCHEs.

A Systematic integration of CORE-UPHOLD with the medical system, including PC doctor and the

hospital, will be able to formalize the social-medical collaboration, which will facilitate the two

systems to acknowledge and understand the content of holistic ACP, and clarify the division of

labour and delegate care work to different parties at different stage of end-of-life care.

54

Recommendations

We recommend competence training for staff members of RCHEs in a larger scale so that we could

push a pilot on this model to examine its impacts at institutional, system integration, family and

patients level.

1. This report with protocols are suggested to be developed into a Chinese manual so that

standardized training to a larger population in Hong Kong and other Chinese communities can

be made possible.

2. We also recommend capacity building for care managers on assessing, planning, carrying out

and reviewing the psychosocial advance care intervention which is grounded in the practice

experience of social care practitioners, as well as the institutional readiness, of the Project.

3. We recommend a pilot and scaling up of CORE-UPHOLD model to refine and validate the

psychosocial intervention protocols and practices identified. in order to achieve this, a practice-

near data collection system is recommended as it could help revise the model according to

emerging care needs of the dying and the family. A sustainable development of this practice

model is needed to ensure its applicability and relevance to the practice reality

55

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58

Appendix I Consent 同意書

在安老院舍與院友及家人協作推行臨終照顧的典範實務

香港大學秀圃老年研究中心現邀請您參與一項由救世軍委託我們進行，關於「在

安老院舍與院友及家人協作推行臨終照顧的典範實務」的學術研究。是項研究由

樓瑋群副教授主理，旨在識別及探討現時臨終照顧服務與院友及家人協作時的最

佳實務手法, 包括評估、計劃及執行照顧。因此，您的參與尤關重要。透過了解

善別後家人的照顧經驗、方式和手法，我們希望達致更全面及有效的臨終社會關

懷。

我們誠邀您與我們進行一次約 1 小時 30 分的訪問，並會對此進行錄音。訪問內

容可能涉及閣下的價值取向，但所有訪問內容只會用作綜合分析，而分析和研究

報告在引用受訪內容時亦會以匿名進行。此研究所搜集的資料，均不含任何能識

別閣下的個人資料或私隱。您在受訪期間有權隨時向我們索取及刪除您的受訪錄

音及相關紀錄。是次研究並不為閣下提供個人利益，但所搜集資料將對研究香港

安老院舍所提供的臨終照顧服務及如何與院友家人協作照顧臨終者提供寶貴的

資料。是次參與純屬自願性質，您可隨時終止參與是項研究，有關決定將不會

引致任何不良後果。所收集的資料只作研究用途，個人資料將絕對保密。如您對

是項研究有任何問題，請現在提出。

如您對是項研究有任何問題，可以隨時與江瑞婷博士查詢(電話:39171256)。若日

後您對是項研究有任何查詢，亦可與首席研究員樓瑋群博士聯絡(電話：3917

4835)。如你想知道更多有關研究參與者的權益，請聯絡香港大學研究操守委員

會 (2241-5267)。

如你明白以上內容，並願意參與是項研究，請在下方簽署。

我明白**及同意/不同意以上內容，並願意參與是次研究

我 **同意 / 不同意在過程中被錄音

(** 請删去不適用者)

姓名：

簽名 : _____________________________

日期 : _____________________________

59

Appendix II Interview Guidelines for Family Members

Family Therapy Concepts Questions Remarks

1. Ripple effects 當院舍既工作員(可能係醫生/社工/護士)同你講，話你既親人要面對人生最後一程

既時候，你哋當時有咩感受？

其他屋企人又點反應？

當時，你哋有無搵人傾？有無用？

Scope of external assistance –

possible role of social worker

2. Concept of complementarity 我哋知道進入計劃既時候，家人要同長者一齊決定好多醫療同照顧既安排，例如急唔急

救或者用唔用人工餵食等。過程當中，家人會經歷唔少壓力同挑戰。

我哋希望了解一下…

你哋喺做呢啲照顧決定既時候，有啲咩嘢困難？(例: 不能接受插胃喉、家人對長者

選擇不認同等等) 點樣克服？社工喺過程裡面最幫到忙既係啲乜？

邊個主要負責照顧長者，實行嗰啲照顧計劃？做起上來最難既係啲乜嘢？

(SUMMARY) 社工喺過程裡面最幫到忙既係啲乜？

Role of social worker in

facilitating family adaptation to

emerging care demand in end

of life care

3. Transforming the pattern of interactions 家庭裡面其他成員又點配合，面對你哋剛才提及既困難？(SUMMARY)

你認為社工有啲咩可以做，會令到個家庭適應得更好？

4. Grief and Bereavement 去到臨終嗰一刻，你同其他家人係點同長者一齊度過既呢？你當時有咩感受？

中國人成日話要「得好死」。你覺得長者喺呢個計劃既支援下過身，係咪真係一種

「好死」？對你面對長者既離世又有乜影響？

你認為計劃既乜嘢支援/部分/工作最重要，以致令家人同長者都可以完滿地走完長

者既最後一程？

Service components that

constitute ‘good death’ in the

last days

60

Appendix III Demographics of Analysed Cases and Interviewees

Cases

Case Code Age Sex Death of the Resident Termination of the Case

1 TTR 01 104y F No Not Yet

2 KYH 09 85y F Yes 19/8/14

(Passed away in the hospital)

3 PLR 01 84y F Yes 25/10/15 (passed away in the

hospital)

4 BHLK 05 92y F Yes 6/9/15 (Passed away in original

bed)

5 BHLK 06 96y F Yes 14/2/15


6 BHLK 07 87y F Yes 22/9/15

(Passed away in PC Room)

7 BHLK 08 93y F Yes 24/4/15

(Passed away in PC Room)

8 KTR 05 67y F Yes 22/7/15 (Stay in PC Rm &Passed

away in the hospital)

9 NAAC 01 97y M Yes 18/6/15 (Passed away in the

hospital)

10 PLR 02 85y F No Not Yet

11 HTR 03 82y F No Not Yet

12 KYH 10 94y M Yes 23/9/15 (Passed away in the

hospital)

13 GNH 04 86y M Yes 10/8/15 (Passed away in the

hospital)

14 TTR 02 86y F Yes 11/10/15 (Passed away in the

hospital)

15 BHLK 10 91y F Yes 20/1/16


16 GNH 05 90y M No Not Yet

17 KTR 03 76y F No 2/11/14 (Passed away in the

hospital)

18 SJSSR 01 92y F No 1/9/14 (Passed away in PC Rm)

61

Focus groups

Social workers

Gender Age

W1 M 20+

W2 F 20+

Family members - Group 01

Gender Age

F1 M 70+

F2 F 50+

F3 F 50+

Family members - Group 02

Gender Age

F4 F 50+

F5 F 50+

F6 F 60+

62

Appendix IV List of Emotions and Correspondent Practices for Distress Alleviations

Emotions of the Dying Intervention

Depression Knowing the person-in-past and view about death of the elder

Supporting the elder by listening and empathy understanding

Recalling/recollecting the source of happiness, such as family life

Unique outcome

Normalizing the sadness

Existing Tools Pleasant Mood and Active Life (PMAL) intervention (Lou, 2016)

Practised in Hong Kong RCHEs to reduce depressive symptoms and depression triggers of older adults. It

is practised with cognitive intact older adults and proven to have positive effects on mood improvement.

Applicability to demented or cognitively unsound older adults is not known yet.

Instrumental Reminiscence Intervention–Hong Kong (IRI-HK) (Choy, 2016; Pinquart & Forstmeier, 2012)

The study was conducted with older adults who are living in empty nests as they are considered to be

the high-risk population susceptible to depression. It emphasizes the use of problem-focused coping

strategies and comprises six intervention sessions and two follow-up sessions. IRI-HK is found to

effectively reduce the depressive symptoms of the intervention group compared to the control group.

Cognitive Behavioural Therapy (CBT) (Pinquart et al, 2007)

The meta-analysis conducted by Pinquart and colleagues examined the effects of 57 controlled

intervention studies of depressive symptoms in clinically depressed older patients. It showed that CBT is

one of the interventions that is particularly well established and acceptable as treatment for depression.

Problem-Solving Therapy (PST) (Areán et al, 2010)

63

PST is proven to be effective in older adults with depressive syndromes, medical problems and

disabilities. This approach helps patients reduce depression by identifying central problems, providing a

method for selecting and implementing problem-solving plans, and becoming a better manager of their

lives.

Anxiety/Anger Calming the elder that everyone has time of discomfort, and importance of following medical staff’s

instructions in easing pain

Providing religious support

Empathetic understanding

Existing Tools Reminiscence Therapy (Pinquart & Forstmeier, 2012; Wu & Koo, 2016)

It is shown by the meta-analysis of reminiscence therapy studies that minor improvement in ‘purpose in

life’ and ‘death preparation’ has been seen. Spiritual well-being and life satisfaction are found to be

improved by spiritual reminiscence intervention in a randomized clinical trial.

Cognitive Behavioural Therapy (CBT) (Ayers et al, 2007; Wolitzky‐Taylor et al, 2010)

Various studies prove that CBT is one of the most effective evidence based treatments in reducing

worries and anxiety disorder symptoms of older adults.

Loss Suggesting alternative ways of self-feeding

Increasing activities of autonomy, e.g. walking

Assisting the elder to increase autonomy –

Encouraging self-expression

Self-empowerment - supported expansion of comfort zone

Emotions of the Family Intervention

Guilt Assessing the availability of ‘buffer for the sense of loss’ (support in the relational ring) → Going into

proxy’s R-ring, so to enhance the social support of the proxy

Existing Tools Bereavement groups (Clark, 2011) are helpful to participants through normalizing the grief experience

64

and supporting the identification and confrontation of feelings and concerns that are associated with the

grief experience

Ambivalence – Sharing of doctor’s experience for family’s reference of decision making

Consulting doctor’s advice with details for understanding trajectory of the illness development

Breaking the bad news by doctor -> Assisted understanding of the trajectory of the illness

development -> explicating the prognosis

Disagreement Facilitating communication of the elder’s personal views rationally in front of the family in Family

Conferences

65

Appendix V Relational Personhood & Care Capacity Assessment (RPCCA - Short)

This protocol is the short version of the assessment of Relational Personhood & Care Capacity. This is created

for reviewing the configuration of the personhood of the dying older adults. After developing a baseline

assessment with Protocol 1 (detailed assessment), this short version can be used for recurrent assessment

for identifying important threshold triggers for more detailed assessment on the older adults’ psychosocial

needs. Each question covered in this short version assessment corresponds to a section in the detailed

version (Protocol 1), so that area(s) of concern arising from this recurrent assessment can be further looked

into and responded to with the help of protocol 1 & 2 respectively.

Assessing the relational personhood of the older adult – Individual-Relational-Societal (IRS) Assessment

Individual

1. Does the older adult feel able to express her/his medical and personal

care preferences?

(If the answer is 0 or 1, detailed assessment is to be conducted for

understanding preferences of the older adult)

0.No 1.Partial 2.Yes

□ □ □

Choices of care:

a. Personal care _______________________________________

b. Medical care _______________________________________

c. Psychosocial care ___________________________________

Relational –

2. Are the following expectations and preferences of care of the older adult and the proxy/family aligned?

(Same as above, if the answer is 0. or 1. detailed assessment is to be conducted for facilitating alignment

of the older adult and the family)

a. Personal care, e.g. daily care, feeding, bathing, physical exercise

assistance


□ □ □

b. Medical care, e.g. doctor consultation, nursing, medical treatment

preferences


□ □ □

c. Psychosocial care, e.g. religious support, family practices, sensory

practices, outdoor activities


□ □ □

d. Post-mortem arrangement, e.g. funeral, burial 0.No 1.Partial 2.Yes

□ □ □

Societal –

3. To what extent can the care routine satisfy the care preferences of the older adult?


□ □ □

Problems encountered____________________________________

(If the answer is 0. or 1. detailed assessment is to be conducted for identifying additional care service

required for the older adult)

66

Assessing sensory functioning, emotional distress and existential crisis experienced by the dying –

Sensory-Emotional-Existential (SEE) Assessment

Sensory functioning , likes and dislikes – to check responses of the following senses of the older adult

Senses 0.No 1.Sometimes 2.Yes Description :

1. Hearing □ □ □

2. Taste □ □ □

3. Vision □ □ □

4. Smell □ □ □

5. Touch □ □ □

6. Movement □ □ □

(If one answer of the above is “No”(0.), or three answers are “Sometimes”(1.), detailed assessment is to

be conducted for identifying residual sensory functioning of the older adult so as to provide suitable

stimulation.)

Emotions of both the older adult and major family carer –

1. Older adult: not at all/barely moderate serious/severe

Depression

□ 1 2 3

Anxiety

□ 1 2 3

Anger

□ 1 2 3

Sadness

□ 1 2 3

No control

□ 1 2 3

(Detailed assessment of emotions has to be conducted if one or more emotion(s) is rated 2 or above)

2. Major family carer: not at all/barely moderate serious/severe

Depression

□ 1 2 3

Anxiety

□ 1 2 3

Anger

□ 1 2 3

Sadness

□ 1 2 3

67

No control

□ 1 2 3

(Detailed assessment of emotions has to be conducted if one or more emotion(s) is rated 2 or above)

3. Positive emotional changes of the dying/proxy/major carer/other significant others:

____________________________________________________________________________________

Existential crisis –

1. Sense of meaninglessness/hopelessness/uselessness □ Yes (full assessment) □ No

2. Lack of religion/faith □ Yes (full assessment) □ No

Family capacity –

1. Proxy/family member’s ability and availability to carry out preferred care chose by the older adult.

0. Low 1. Average 2. High

□ □ □

(If the answer is 0. or 1., detailed assessment is to be conducted for identifying additional support

required for the proxy/family)

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