Developing a complexity-informed approach to hospital end-of-life care for people with dementia and their families

Abstract

Little is known about the role of hospital social work during end-of-life care of older patients diagnosed with dementia. In Australia, hospital social work assessment and intervention have been predominantly framed through systems theories, which provide limited insight into the dynamics shaping intervention outcomes. Using a complexity-informed theoretical approach, this article draws from a study examining end-of-life transitions for people with dementia in general medicine units. Expanding from a traditional systems perspective, we demonstrate the potential for social work to engage in situation sensitive problem-solving methods drawn from complexity theory to facilitate family adjustment following end-of-life transitions.

Keywords

Dementia hospitals palliative care social work

Introduction

Withdrawal of active therapies and the transition to a palliative and end-of-life approach involve decision-making between patients, their families and clinicians. Hospital-based end-of-life care is provided through a multi-disciplinary approach; physicians being primarily responsible for diagnosing and determining treatment goals, nurses providing the majority of direct patient care and social workers providing family support. Ideally in hospital, families support patients’ participation in decisions around treatment and care issues. However, in many cases, patients lack capacity to make informed and reasonable decisions, such as in the case of dementia.

Dementia is a neurodegenerative condition characterised by the progressive loss of cognitive and functional abilities. People with dementia often experience recurrent infections or comorbid life-limiting illnesses, contributing to mortality. As many people with dementia lose capacity to make decisions, families and clinicians share the moral and ethical weight for determining treatment and care decisions. Clinicians may assume that families feel confident making decisions on behalf of a relative, and neglect to provide information and support (Davies et al., 2014; Dening et al., 2012). Conflict may arise between clinicians and families who hold divergent views on what is in the best interest of the patient (Davies et al., 2014; Lamahawe et al., 2018; Small et al., 2007). Alternatively, families may feel excluded from treatment decisions entirely (Caswell et al., 2015).

Social work with older patients affected by dementia involves comprehensive assessment and discharge planning through multi-disciplinary collaboration, and working with their families and formal community supports (Duffy and Healy, 2011; Heenan and Birrell, 2019). Social work research regarding psychosocial issues experienced by older patients has largely focussed on discharge planning, particularly placements in residential aged care (Fitzpatrick and Grace, 2019; Kendall and Reid, 2017). As such, social workers operate at the boundaries between agents and systems, and/but also within the clinical environment of the treating team and health organisation.

Social workers likewise have an important role in providing patient and family support during end-of-life care in hospital (Stilos et al., 2020). Families often report unmet needs following the death of a loved one in hospital, highlighting gaps and inequalities in service provision (Dose et al., 2015). Care of the dying can be disenfranchised in acute hospitals, where death is seen as a medical failure rather than a natural part of life (Gallagher, 2014).

Traditionally, general and ecological systems theories frame hospital social work assessment approaches to reduce patients’ intricate psychosocial realities into a structured and organised case that is amenable to analysis (Bawden and McDermott, 2018). Broadly, systems theories consider how social problems reflect the interplay between biological, psychological and social factors, usually locating the patient in the centre of an encompassing environment (Payne, 2014). Within the hospital setting, systems theories have been used to develop ‘person-in-environment’ classification tools (see Karls and Wandrei, 1992) that measure and identify psychosocial factors influencing hospital admissions, such as length-of-stay (Keefler et al., 2001). Although hospital treatment primarily revolves around resolution of biomedical issues, there is the tendency for social work to diminish the presence of the physical self, and instead emphasise psychological and social adjustment (Cameron and McDermott, 2007). Indeed, research utilising person-in-environment approaches reinforces the need for social workers to address primary psychosocial needs, but nevertheless also consider how physical and mental health conditions influence global wellbeing (Nilsson et al., 2013). However, isolation of biopsychosocial variables contributes to a lack of synthesis, which might contribute to a better understanding of how changes within subsystems affect clinical outcomes. Instead, systems theories tend to paint a relatively simplistic and formulaic understanding of human behaviour (Payne, 2014).

The limitations of traditional systems theories have seen the emergence of new dynamical theories in social work research and practice (Green and McDermott, 2010). Rejecting classical notions of linearity and cause–effect outcomes, complexity theory embraces the uncertainty and unpredictability that confront social workers in everyday clinical situations (Sanger and Giddings, 2012). Complex systems exhibit the characteristics of emergence, feedback, adaptation and self-organisation. Complex systems are structured through ‘fuzzy’ boundaries delineating elements and subsystems, and demonstrate sensitivity to initial conditions and context. This highlights that similar systems may have drastically different outcomes depending on seemingly minor perturbations (Byrne and Ragin, 2009; Hudson, 2010).

A complexity approach encourages clinicians to identify how interdependencies between elements influence broad outcomes, shaped through the interaction between individuals positioned within the care system (Hudson, 2010). This expands on traditional systems-based clinical approaches that assume sufficient investment of clinical intervention and time will result in equilibrium and resolve psychosocial issues. Instead, a complexity approach integrates the possibility of unexpected and diverse outcomes in clinical care. Patients may be admitted for active treatment only to succumb to an end-of-life event, reflecting the unpredictable dynamic between frailties, multiple pathologies or advanced terminal illnesses (Nardi et al., 2013).

Complexity is best understood as the pattern of behaviour arising from interactions between multiple elements that shape health and social outcomes. Furthermore, ‘complexity’ may invoke different interpretations depending on discipline perspective. The presence of multiple psychosocial needs as indicative of complexity is a consistent theme in the literature. In fact, physicians attribute complexity to concurrent psychosocial factors rather than medical intricacy alone (Grant et al., 2011). Alternatively, social workers have defined complexity based on social determinants of health and the length of time spent on interventions (Muskat et al., 2017). Within the hospital, McAlinden et al. (2013) defined complexity as presenting through multiple clinical demands, unstable processes, patient and family characteristics, social vulnerability and the interface with stakeholders inside and external to the hospital.

Although decision-making regarding treatment is based on the known illness and clinical signs of deterioration or treatment non-response, in the case of dementia there are hidden factors outside of the awareness of the individuals involved; namely, the patient’s own interpretation of their health, subjective quality-of-life and desired treatment goals. A complexity approach seeks to uncover elements that may influence system behaviour and outcome, and there is growing interest in identifying the systemic complexity within palliative care contexts. Through illustrating boundaries between patient, team and social systems, Pask et al. (2018) identified unique factors relevant to clinical assessment, such as psychosocial resilience and health literacy. Furthermore, a complexity approach demonstrates how clinicians’ unintentional behaviour can result in distress for patients and families (Hodiamont et al., 2019).

Aim

Using the framework of complexity theory, we sought to understand how families and clinicians make decisions regarding end-of-life treatments for people with dementia in hospital, and identify emerging clinical implications through this novel framework.

Methods

Study design

Qualitative research framed by a social constructionist epistemology enabled exploration of subjective perspectives from varying positions within the end-of-life care system for patients with dementia in hospital (Berger and Luckmann, 1984 [1966]). A social constructionist epistemology argues that knowledge is jointly constructed through language and social processes. In the present study, participants are positioned as actively creating meaning around end-of-life transitions for people with dementia, from different personal and professional vantage points within a specific historical and cultural context.

Study setting

The setting for the study involved the general medicine units within a large public hospital in Melbourne, Australia following approval by the hospital research ethics committee (Monash Health HREC 15242A). The boundaries of general medicine pertain specifically to a patient population and a ward environment. This study was limited to general medicine patients admitted to the primary general medicine wards.

Participants

Although it was not possible to interview patients themselves, clinicians and families were able to provide first-hand experience about caring for patients with dementia at end-of-life.

Clinicians

The study recruited hospital clinicians representing different levels of professional and clinical experience within the care system. Physician participants included senior consultants and advanced trainee registrars. Nursing unit managers, registered nurses and palliative care nurses provided a nursing perspective. The social work sample included managerial, senior and graduate social workers.

Bereaved families

Bereaved families were identified through retrospective screening of all deceased general medicine patient files over the study period. Patients needed to have a diagnosis of dementia in admission or discharge paperwork documented by medical staff. End-of-life was qualified through documentation of a decision to pursue ‘palliative/comfort/end-of-life care’, with all proceeding medical, nursing and psychosocial care reflecting this transition. This study did not seek the views of legal guardians or recruitment of cases where coronial investigation was necessary to establish circumstances or cause of deaths.

Data collection

Semi-structured qualitative interviews with participants were conducted at a location of their choice. The interview schedule design was shaped through a narrative approach that sought participants’ chronological experiences pertaining to end-of-life care (Polkinghorne, 1988). Complementing a social constructionist epistemology, the use of narratives enabled sensitive exploration of participants’ experiences of illness, deterioration and death using their own language and stories. These included relevant biographical and demographical details, as well as clinical information relevant to the study such as patients’ premorbid health, function and social history. Interviews were audio recorded and transcribed verbatim with consent, with identifying features removed during transcription.

Data analysis

Analysis began at the commencement of data collection when emerging ideas, arguments and phenomena were used to refine subsequent interview encounters (Creswell and Poth, 2018). Saturation occurred when there was repetition of patterns and themes across the data set. Transcripts were uploaded to NVivo (QSR International) for electronic coding. One author independently coded transcripts in entirety, with subsequent organisation of codes and development of broad thematic frameworks developed within the research team (Alston and Bowles, 2012).

Findings

In total, there were 32 participants consisting of 20 clinicians and 12 bereaved family members. Findings were analysed to illustrate the structural and interpersonal context for end-of-life decisions within the acute hospital setting. In doing so, we sought unifying codes and themes that were present across both clinician and family narratives.

First, data were examined to identify the psychosocial structure providing context for the end-of-life encounters. Second, we highlight the factors driving decision-making processes concerning patients diagnosed with dementia. Finally, patterns of family adjustment following withdrawal and bereavement are described.

Elements, agents and context

Attitudes towards dementia

Although patients are usually not admitted primarily due to dementia, presentations involving dementia were common. Clinicians stressed that decisions regarding treatment were made on a case-by-case basis, and that dementia did not necessarily indicate poor quality of life or suggest active treatment would be futile:

. . . an individual basis every time because dementia can be delightfully confused vague lady who gets some joy out of her existence. (General Medicine Consultant)

Both clinicians and families cited an ability to recognise loved ones as indicative of quality-of-life. Despite the common perception that dementia automatically inferred the social loss of a patient, most families described a close and ongoing bond with the patient:

I was very lucky that her memory loss never got to the point where she didn’t know who I was and would always recognise me. (Son)

Clinicians were also critically reflective regarding how dominant social constructions of dementia within the hospital might influence their treatment decisions:

I think that people with dementia unfortunately get a bad rap . . . in medicine, it’s used as the label and sometimes that label is interpreted as ‘give me less care’. (Registrar)

Yet, as is to be expected, the dominant focus of hospital treatment was to remedy illness and avoid unnecessary death. Families often recalled physicians’ desire to offer cure:

I knew that [doctor] would probably offer [treatment] because their job is to sustain life and I appreciated it, even though I didn’t accept it. (Daughter)

A holistic approach

Clinicians stressed that dementia itself did not indicate the need to pursue a palliative approach, rather than the decision took into account the presence of other functional and cumulative medical factors that overwhelmed the body’s ability to recover:

I would base that decision on other organ failure. I don’t think it would just be dementia that would warrant end-of-life treatment. (Registrar)

For clinicians, patients’ social context provided indications regarding their health and quality of life. Aside from two, all patients discussed by family participants were residing in residential aged care at the time of their admission. During the course of admission, irreversible deterioration necessitated the families of the two patients remaining at home to engage with social work to pursue discharge to a nursing home:

That was a decision we were dreading but it’s a process that had to happen, we knew that. (Daughter)

From a treatment perspective, living in a nursing home was generally a signal of frailty and vulnerability:

If I met somebody in residential care, I would definitely have a bigger discussion about where things are going. (Geriatrician)

Clinicians spoke insightfully around the psychosocial factors affecting caregivers, particularly carer grief and burnout attributed to the demands of caring for people with high functional needs. End-of-life transpired on a continuum involving serial losses and adjustments:

There is the whole range of things, which happen beforehand, which really impact emotionally for someone before the team are saying ‘this person is actively dying’. (Social Worker)

Families had often been responsible for initiating and implementing multiple decisions relating to their relative’s health and social wellbeing. In particular, families spoke about the distressing impact of aged care placements:

Mum thought we didn’t love her anymore because we put her in there. She actually tried to escape at one stage. (Daughter)

Blurred clinical boundaries

General medicine is, in the words of one physician, ‘the Golden Triangle; characterised by acuity, uncertainty and ambiguity’. Each patient and family received care reflecting a multi-disciplinary approach. Within the multi-disciplinary team, it was highlighted that provision of certain interventions – specifically psychosocial care – was not domain specific:

I think our roles blur incredibly. Except for the medical knowledge, we do a lot of the same things. We do the symptoms that you [social workers] don’t, and understand a disease trajectory in more detail . . . anything else I think a good experienced social worker can do the same. (Palliative Care Nurse)

Another influence on professional scope of practice was expertise and seniority. Clinicians referred to the development of clinical skills including pharmacotherapy, communication and confidence regarding decision-making issues as developing over time, through experience. Seniority manifested as an identified position within the clinical subsystem and denoted authority regarding decisions. Several families observed social hierarchy within their treating team:

They had young doctors and they walk around with the big doctors, as I call them. (Son)

Clinical attitudes to decision-making were also influenced by evolutions within professional cultures. For example:

I try very hard not to be paternalistic . . . we were taught medicine 50 years ago in a very paternalistic way, very much ‘do as I say’. (General Medicine Consultant)

Hidden from families’ view was the impact of clinicians’ personal experiences of caring for a relative with life-limiting illnesses, including dementia. During interviews, clinicians often shared intimate recollections of personal experiences of end-of-life care, demonstrating a dual identity as both a professional and a family member:

If I could just help one family the way that my family was treated when my [relative] was sick I think that it would all be worth it. (Nurse)

The decision-making dynamic

The decision-making process involved feedback concerning multi-disciplinary and familial assessment of patients’ clinical progress and communication through forums such as family meetings. Importantly, participants highlighted how they included the person with dementia in decisions around treatment withdrawal.

Considering decision-making capacity

Just as a dementia diagnosis may insinuate no treatment beneficence, there is also the risk that clinicians assume it infers complete lack of decision-making capacity.

Sometimes we just assume they can’t make any decisions . . . I see that a lot. (Nurse Unit Manager)

Clinicians relied on legal frameworks and clinical assessment to determine the severity of cognitive impairment and capacity for patients to make informed and reasonable decisions. Where possible, families elicited the views of their relative regardless of cognitive deficits:

We said ‘Listen, this is happening . . . do you want to have an operation to get rid of the blockage in your bowel, the cancer and stuff?’ and he was like, ‘Oh, I don’t think so’. But then he wouldn’t remember 5 minutes later. (Daughter)

In the majority of cases families relied on past discussions held with the patient that often relied on theoretical future scenarios:

Three years prior I was able to have more coherent discussion with mum – but she wasn’t really fully cognitive . . . I had to simplify that discussion and say ‘if we need to take you to hospital mum, say if you were having an operation’ – cos you’re dealing in unknowns when you have this discussion – ‘would [you] rather stay here or go to hospital and try and do something about it?’ And she said ‘no I don’t want to go into hospital; if my time’s come my time’s come’. (Son)

In most cases, patients had been unable to participate in decision-making and also lacked formal advanced care statements. As deterioration is often the result of unexpected events, clinicians worked creatively to elicit patient preferences and achieve unity with families regarding decisions:

Where the person doesn’t have capacity, the best thing we can do is try and have the family look at things from the patient’s perspective: ‘If Billy could wake up for 5 minutes and really see what his life’s going to be like, is this what Billy would want?’ (Palliative Care Nurse)

Establishing futility and best interests

Physicians discussed offering trials of active treatment to ease families into end-of-life. These often involved low-intensity treatment such as intravenous fluids or antibiotics, which ‘doesn’t hurt the patient but it gives some hope to the family’ (General Medicine Consultant)

Balancing the needs of families with recognition of treatment futility was the physician’s responsibility:

I think one of the key things is that you have to decide purely from a medical point of view what is futile and what is not. (Geriatrician)

Nevertheless, the majority of families in this study recognised futility themselves from observations of the patient’s progressive deterioration:

They put the drip in him, but we knew that was only prolonging what was inevitable. You could see him dying in his eyes – he could see it. (Daughter)

Treatment priorities were also influenced by the notion of ‘best interests’. These best interests acknowledged any premorbid physical vulnerability and likely futility of treatment, quality-of-life as perceived by clinicians and family, and prioritisation of comfort:

Our main concern was that she was comfortable, so most of the decisions were based on that. (Son)

I think the family often are just very concerned that they don’t suffer. (General Medicine Consultant)

Facilitating communication and feedback

Recognition of treatment futility or poor response to therapies instigated a bifurcation in the care approach. It was this point that families and clinicians jointly interpreted emerging responses to treatment, and considered withdrawal of active therapies. In the general medicine units, family meetings were opportunities to explain treatment limitations, provide feedback about the patient’s progress and resolve conflict. Families were also able to provide feedback regarding their own perceptions of treatment beneficence and concerns regarding patient care:

I think one of the things I would do is have a family meeting . . . you need to sit down with the doctors and discuss things and outline what the family are happy with and what they are not happy with. (Social Worker)

Family meetings were initiated in response to clinical change, and their outcomes led to transformations and adaptations to the overall goals of care. Participants highlighted that a power imbalance existed within the dynamic between families and physicians influencing role and participation in decision-making, particularly relating to physicians. Several clinician participants referred to the need for physicians to give families ‘permission’ to accept a palliative approach:

It’s like asking me to repair somebody else’s car. I don’t have those skills. I don’t have that knowledge. It’s actually really tricky. (Registrar)

In other cases, families initiated meetings with physicians to advocate on behalf of a loved one who was unable to express their wishes regarding comfort over cure:

Time was ticking by and you see that point of no return. Then you go, ‘we would like to meet with the doctors because this is not working’. (Daughter)

Alternatively, it was suggested end-of-life was the outcome of pathophysiological processes that occurred regardless of the decision to trial active treatment. Echoing this, clinicians acknowledged the limitations of treatment and that, in many cases, neither family nor clinician had control over outcomes. Rather, the patient’s body did:

It doesn’t matter what any of us are doing. We can prolong things, but the reality is that they are dying. So I say that ‘I haven’t made a decision, you haven’t made the decision, [it is] this patient that has decided it’s time’. (Registrar)

Adjustment and adaptation

Following the decision to transition to a palliative approach and initiate end-of-life care, clinicians and families reflected upon the impact of being involved in treatment decisions. On the one hand, poor adjustment resulted from conflict and distress, whereas positive experiences were associated with feeling supported and respecting patient preferences.

Conflict and distress

A smooth transition to end-of-life care hinged on families’ concordance with the decision to withdraw life-sustaining therapies. In this study, clinician participants frequently referred to current or past cases where families struggled to accept that a loved one was dying or that treatment was futile. Conceptually, the development of conflict emerged from the system:

It’s resistance from family because they feel that more should be done to keep them alive. (Social Worker)

Clinicians considered the long-term implication for families involved with treatments to withdraw therapies:

There is always going to be a family member left behind, and there’s always going to be someone who sometime will say ‘what if?’ and have some sort of regret. (Registrar)

Interestingly, none of the families interviewed expressed distress regarding the decision to withdraw active therapies. Rather, grief and distress arose in response to unmet bereavement support needs or eruption of family conflict:

The sad thing is, as I said to mum, I will always remember my father passing as my brother being an arsehole . . . he was rude to my son and he was extremely rude to me. (Daughter)

Support and satisfaction

In contrast, positive end-of-life transition involved a balance between family involvement and physicians’ guidance:

The way I approach it is, I am the ‘medical expert’, they are the ‘person expert’, and it is supposed to be very much a merging of the two. (Geriatrician)

Several participants recalled gestures of kindness or sentiments expressed by the treating team that contributed to feelings of support. Families valued clinicians’ recognition and acknowledgement of the emotional toll of being a decision-maker:

[Doctor] was absolutely lovely with us, spoke very gently with us, explained everything and we said ‘yes, it’s time, we know it’s time’. I cried that day and he said, ‘Look, you’ve been the “strong one” the whole way’ and I said ‘I know’. (Daughter)

Families in this study largely reported positive experiences of decision-making. Despite the sadness of losing a loved one, families were able to derive comfort knowing they had made decisions consistent with patients’ wishes:

It wasn’t my decision. He had already made it for me and I just needed to make sure it was followed. (Daughter)

Discussion

The decision to withdraw active therapies and transition to end-of-life on behalf of patients who lack capacity is perhaps one of the most ethically burdensome decisions facing families and clinicians. The research described here outlines a relatively common situation that arises in hospital general medicine units, involving the decision to withdraw life-sustaining therapies for patients with dementia, a condition that often involves the loss of decision-making abilities.

Although initially it could be assumed the decision to withdraw active treatment is a purely medical problem involving a pathophysiological non-response to treatment, the decisions to withdraw active therapies are negotiated between families and physicians, informed by nursing assessment and facilitated through social work support. More broadly, these decisions take place with a specific clinical context and with the guidance of clinicians with diverse perspectives and experiences. Theorising end-of-life presentations through the lens of complexity enables greater insight and appreciation of the biopsychosocial intricacies shaping clinical outcomes and how social work involvement might augment the quality of care.

Adapting complexity-informed practice

Traditional social work systems theories could be argued to present a simplistic and mechanistic analysis of clinical cases, rather than offering practitioners guiding frameworks to address psychosocial problems. Compared to the advances in medicine and health sciences in the past decades, there has been little evolution in how hospital social workers tackle complexity in practice. Such social workers operate within medically orientated post-positivist epistemological cultures (Morse, 2013), and there is a need to legitimise our evidence and knowledge base (Berzoff and Drisko, 2015) and perhaps more broadly, to defend our contribution and value. Yet, classical models that offer predictive or prescriptive approaches to presenting issues are necessarily reductionist and focussed, but fail to appreciate the unique variables that may be present in psychosocial scenarios. Alternatively, mapping the components and parameters of complex cases enables greater clarity regarding possible system outcomes and indicators for early intervention.

Complexity-informed practice involves situation sensitive problem-solving methods (Hodiamont et al., 2019). The value of hospital social work has long been that of providing a psychosocial context in which to frame medical admissions, responding to emerging and evolving needs to facilitate adjustment through either discharge or death. Problematically, clinicians are faced with the dilemma of needing to conduct comprehensive assessment and formulate discharge plans under increasingly operationally driven models of care that undermine humanistic engagements that patients and families value from social workers (McLaughlin, 2016). We would argue it is the role of social work to identify hidden aspects of human experiences (Pask et al., 2018), such as vulnerability, and integrate these factors into assessment and discharge plans.

Situation sensitive problem-solving is work which focuses on the recognition of intersections of aspects of complex adaptive systems. We propose that integrating a complexity-informed approach based on characteristics of complex adaptive systems strengthens synthesis and analysis of psychosocial assessment and intervention.

Sensitivity to boundaries and initial conditions

Complex adaptive systems involve multiple systems and subsystems nested within a global hierarchy. Systems exhibit fuzzy boundaries demarcating the interface between structures and functions. For example, the professional roles within the multi-disciplinary team in relation to care of dying patients and their families were often fluid. All clinicians were involved in interpersonal exchanges with families regarding patient care, treatment decisions and emotional support. The contours of the social work role are perhaps the most difficult to delineate, operating within the boundary of the treating team but also theoretically the nexus between team and family during conflict. Although physicians frequently conduct family meetings without social work, social work participation often indicated recognition by the team of the presence of underlying tensions within family and patient subsystems. This again affirms the role of social work in identifying and understanding psychosocial elements affecting patient care and illuminating their presence to the broader team.

Broadly, clinicians acknowledge themes of discrimination regarding people with dementia and concern that patients may receive different end-of-life treatment than cognitively intact patients. Specifically, there was concern that patients with dementia may be discriminated against. Within the hospital setting, this debate concerns the reasonable use and administration of hospital resources such as beds and active therapies, particularly for patients with advanced dementia (Salz et al., 2020). Underpinned by broad humanistic social aims, hospital social workers have a responsibility to consider the implications of potentially discriminatory practices on the care of potentially vulnerable patients and critically examine the concept of ‘best interests’ across clinical practice.

Sensitivity to interdependence and non-linearity

Social work has traditionally used theories that reflect a person-in-environment, ecological and biopsychosocial underpinning (Hudson, 2010). In practice, this often involves bracketing physical, psychological, familial and social systems rather than examining interdependencies between local and global factors (Nilsson et al., 2013).

In reality, the research here highlights how the care of older patients is entangled with family support. Patients are often dependent on their families to navigate complex hospital and social systems for discharge on their behalf (Fitzpatrick and Grace, 2019) and express their preferences around end-of-life care. Similarly, psychosocial adjustment correlates with patients’ physical and functional needs, which may fluctuate during admission (Redfern et al., 2016). Working holistically with complex cases infers that the target of social work intervention is areas of interdependence, between physical health and community adjustment or relationship between treating team and family unit.

Although initial assessments framed through classical systems frameworks can provide a comprehensive snapshot of psychosocial functioning upon admission, hospital social work is process orientated. Owing to the complex health conditions that interact with the presenting medical issue along with treatment factors, patients’ clinical and psychosocial presentation may undergo change with new complications or conflicts emerging during admission. In the examples provided above, several families had engaged with social work prior to deterioration with the view of negotiating placement in aged care. Discharge plans do not follow linear courses, but rather require clinicians to integrate broad frameworks of potential outcomes and possibilities. This highlights the need for social workers to be adaptive and empowered to respond flexibly to diverse pathways and find alternates to process-driven care (McLaughlin, 2016).

Sensitivity to adaptation, emergence and the potential for self-organisation

The focus of social work intervention is the adaption of the patient and family to clinical change, rejecting formulaic explanations and expectations but rather embracing diversity in system behaviour. Being able to recognise the possibility and indications for poor outcomes, such as guilt, family conflict and distress in the present study, enables social workers to intervene to minimise or alleviate unnecessary suffering.

Furthermore, the sheer number of variables present in complex systems contributing to outcomes and adjustment challenge clinicians to critically reflect around the strength of inputs on overall system behaviour. Indications of complexity necessitate constructing parameters and boundaries around social work involvement and expectations to alleviate clinician distress (McAlinden et al., 2013).

Clinical implications

Complexity-informed practice challenges social workers to go beyond a superficial and mechanistic understanding of patient and family situation to consider the interdependencies and potential outcomes driving interventions. As part of multi-disciplinary teams, social workers are uniquely positioned to identify and communicate how potentially hidden clinical and psychosocial aspects may influence patient and family understanding of admission outcomes (see Figure 1).

Figure 1.

Applying complexity-informed social work practice to end-of-life care.

Several further clinical implications can be drawn considering the benefit of a complexity approach when responding to potential end-of-life cases.

Consider and prepare for diverse patient care outcomes and proactively adapting clinical plans in response to emergent issues. Although end-of-life may appear to be an unexpected outcome, adapting psychosocial care to meet palliative needs is simply adjusting clinical goals rather than crisis.

Explore how family dynamics influence decision-making roles in relation to transitions to end-of-life care. Commonly, families of older people may have experienced the upheaval of aged care placement decisions. Teasing out these prior experiences may provide insight into potential responses to grief and loss, as well as familial hierarchies and tension that may shape decision-making processes.

Clarify patient and family expectations regarding treatment outcomes, such as preparation for potential deterioration. In cases involving multi-morbidities and uncertain trajectories, this might consider how patient and family health literacy shapes interpretation of medical information.

Finally, expanding on the role of social workers as the ‘glue’ that bonds patients, their families and the treating team during challenging admissions (Craig and Muskat, 2013), a complexity-informed approach highlights the opportunity to reconcile differences in perspectives between agents in the care system. Hospitalisations involving end-of-life transitions naturally elicit emotional responses from both families and the professionals involved with decision-making processes. Although there are clear differences between families and clinicians in terms of the nature of their relationship with the patient, and their respective personal or professional expertise that informs decision-making, ideally both collaborate in a mutually supportive manner resulting in a good quality of end-of-life care.

However, as highlighted by the professionals in the study, there are cases when transitions are marked by conflict regarding treatment, often between physicians and families around treatment decision-making (Lamahewa et al., 2018). In these situations, both parties experience suffering, as conflict can be a risk factor for poor bereavement outcomes for relatives, and lead to distress and dilemmas for clinicians responsible for medical care. As members of the multi-disciplinary team and patient and family advocates, social workers often have insight into team functioning, as well as family dynamics that impact on engagement and decision-making. When social workers engage in critical assessment and analysis of these respective systems’ characteristics and behaviour, they occupy a unique position by spanning the boundaries among agents. This approach strengthens the potential to engage in advocacy, mediation and reconciliation when perspectives on treatment decisions differ between families and the treating team.

Limitations

The use of complexity theory in ‘real-life’ social work practice is an emerging and evolving science, subject to iterations through application to practice. There are several aspects of complex adaptive systems that have not been considered here. For example, self-organisation is a common feature of complex adaptive systems, where a large group of elements interact resulting in global order – in this case natural death – without external interference or conscious intent (Hudson, 2000). Articulating what self-organisation may mean in the context of dying and end-of-life is conceptually challenging. Principles of self-organisation may have greater relevance to analysing bereavement experiences and outcomes to interventions. Furthermore, due to brevity and relevance, this article has focussed on aspects of complex systems most salient to social work intervention requiring clinical judgement and planning.

Similarly, deciding on parameters to define the concrete and theoretical system examined in the research was challenging. Unlike Hodiamont et al. (2019), we did not conceptualise the study’s system beyond the hospital walls, such as broader sociocultural and legal aspects and the nuances of the Australian public health system. Two rationales provide explanation. First, it was necessary to recognise boundaries that were defined by both clinicians and families. Although clinicians cited legal and organisational policies, these were not a dominant theme within families’ narratives. Second, in restricting the boundaries to the hospital and clinical context, it is hoped these findings will resonate across international settings of social work practice.

Conclusion

This article describes the clinical experience of end-of-life decisions for patients with dementia and their families in hospital through the framework of complex systems theory. The findings highlight how social work is positioned within the multi-disciplinary system and contributes to patient and family care through facilitating communication and providing support. Furthermore, this exposition illustrates the potential to develop situation sensitive problem-solving approaches to guide clinical interventions.

Footnotes

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Felicity Moon

Fiona McDermott

Author biographies

Felicity Moon is a social work clinician-researcher with an interest in end-of-life care, hospital social work and support for patients and families affected by dementia.

David W Kissane, Emeritus Professor, is an academic psychiatrist, psycho-oncology researcher and author. His academic interests include group, couples and family psychotherapy trials, communication skills training, studies of existential distress and the ethics of end-of-life care.

Fiona McDermott, Associate Professor, works in the Faculty of Medicine, Nursing and Health Sciences at Monash University as an Adjunct Professor.

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