Introduction: multimorbidity and the prevalence of uncertainty
The prevalence of illness increases as people get older, such that over 50% of those over 65 years have multiple chronic conditions or ‘multimorbidity’ (Barnett et al, 2012). Multimorbidity impacts on a person's quality of life and can lead to progressive functional impairment (Ryan et al, 2015). Older adults are increasingly living with multiple serious or life-limiting illnesses and cause-of-death projections indicate this trend will continue (Finucane et al, 2021).
While guidelines recommend co-ordinated, person-centred care in multimorbidity (Farmer et al, 2016), in reality, those with multiple serious illnesses face complex and fragmented care (Zwijsen et al, 2016). They experience an unpredictable illness trajectory, meaning that the course of their future illnesses is unknown and unknowable. Consequently, uncertainty is a particularly prominent experience in multimorbidity (Etkind et al, 2016; Mason et al, 2016). Informal carers of multimorbid older people also experience uncertainty, and this can be unrelenting; some feel overwhelmed by continual uncertainty regarding what will happen next and how they should respond, which can adversely impact their own lives and increase carer burden (Nanton et al, 2015; Price et al, 2019; Andersen et al, 2020).
Health professionals caring for those with multiple illnesses also experience uncertainty. Such uncertainty may relate to complex situations that do not fit standard models of care, resulting in the need to make decisions with limited evidence and no ‘right’ answer (Tinetti et al, 2019). The complexity of health services, particularly in community settings, can result in ambiguous role separation and uncertainty about the division of responsibility for community nurses and general practitioners (GPs) (Sinnott et al, 2015; Ploeg et al, 2017). This may be due to poor interprofessional communication, or the fact that multimorbid patients do not always fit within standard care pathways. Professionals may also experience uncertainty in relation to their patients’ unpredictable illness trajectories (Larsen et al, 2017).
This article aims to highlight the issue of uncertainty in the context of multimorbidity, and summarises evidence on the uncertainties experienced by patients, carers and health professionals. In the second part of this article, possible approaches to address and communicate uncertainty are discussed.
What is uncertainty?
Uncertainty is the subjective perception of ignorance, or more simply put, ‘knowing that you do not know’ (Han et al, 2011). It is ubiquitous within healthcare and can vary in terms of who is uncertain (patients, carers, and/or health professionals); how things are uncertain (that is, are they ambiguous, complex or unpredictable); and what is uncertain (that is, does uncertainty relate to the illness, treatments, care, the future, or another issue) (Han et al, 2011). Uncertainty is a particular issue in the context of multimorbidity, where each illness adds an additional layer of complexity and the interacting illness trajectories make for an unpredictable illness course (Etkind et al, 2022). Box 1 presents an example scenario, illustrating some of the uncertainties that may be revealed during a consultation with a multimorbid older person, and how these may be distributed between patient, carer and health professional.
Box 1.Example scenario for multimorbidityCase study: Justin Spiegelman is 89 years old. He has recently been diagnosed with chronic lymphocytic leukaemia. He also has congestive heart failure, peripheral vascular disease and Chronic Obstructive Pulmonary Disease (COPD). He has recently attended the memory clinic and received a diagnosis of mild dementia. He lives with his wife who is mildly frail and recently had a fall. While independent within his warden-controlled flat, he has been requiring increasing support with activities outside of the house. He attends appointments with haematology and respiratory teams and is on the caseload of the community heart failure nurses. He receives community nursing support for management of a leg ulcer and is also having regular blood tests at home.During a community nursing visit, he expresses that he does not understand why he needs such frequent blood tests. He also expresses that he is feeling more breathless during the day and is not sure why.His wife expresses her concerns about how long they will manage in the flat and whether they will need more support. She asks what might happen with his health in the coming months.Mr Spiegelman expresses uncertainty about his illness (cause of increased breathlessness), and care (reason for blood tests). His wife is uncertain about future care needs and illness trajectory. From a professional perspective, there may be role ambiguity: it may be unclear who is responsible for decision-making about the blood tests, or who would be best placed to advise on breathlessness. The community nurse may be equally uncertain about Mr Spiegelman's illness trajectory.Each uncertainty may need to be approached differently. There is likely to be an answer about the blood tests, that is, the reason for testing is available but is just not known to the patient. However, the future illness course will always be unpredictable and this uncertainty is not reducible.In this scenario, Mr Spiegelman and his wife are asking for uncertainty to be addressed, and so, a conversation about uncertainty is appropriate, but in some situations people may respond to uncertainty by avoiding or accepting it. Any approach to uncertainty must take into account how those experiencing uncertainty respond to it.
Uncertainty is not always harmful, and indeed, some find it protective at times, using it as a way to hold on to a positive outlook in the context of serious illness. However, uncertainty can also be the source of extreme distress, and can be paralysing, impairing people's ability to make decisions about care. For some, the complex course of illness in multimorbidity can lead to overwhelming uncertainty, affecting sense of self and inhibiting the ability to form or express preferences (Nanton et al, 2015; Etkind et al, 2019). This, in turn, may lead to a lack of care planning, crisis hospital admissions and may affect perceived quality of life. Recognising and addressing uncertainty effectively is one possible way to avoid these negative effects. Health professionals can also be affected by their experiences of uncertainty and professionals who are less able to tolerate uncertainty are at higher risk of emotional distress and burnout (Strout et al, 2018).
A shared model of uncertainty in multimorbidity
The way in which we can approach uncertainty depends on how it is experienced by patients, carers and health professionals. Recent evidence from systematic review suggests that uncertainty is fundamentally experienced across the same domains by all of these groups (Etkind et al, 2022). The review synthesised the experiences of health professionals, patients and carers from existing qualitative literature and proposed a model of ‘total uncertainty’ to explain the multi-perspective experiences of uncertainty in multimorbidity (Figure 1). Total uncertainty comprises domains of: ‘appraising and managing multiple illnesses’ (uncertainties relating to physical aspects of illness); ‘fragmented care and communication’ (relating to care processes); ‘feeling overwhelmed’ (psychological effects of uncertainty); ‘uncertainty of others’ and ‘continual change’. The domains of total uncertainty provides a lens for us to explore the uncertainties that are experienced in a given clinical situation from the perspective of health professionals, patients and carers. Considering these domains during clinical encounters may help with recognition of uncertainty (Etkind et al, 2022).
What can we do about uncertainty?
Ocassionally, the response to uncertainty can and should be to try and remove it. For example, when uncertainty relates to complex and fragmented care, helping people to navigate the care system and liaising with colleagues to clarify the ambiguous division of responsibility is both possible and important (Box 1). However most uncertainties experienced with multimorbidity cannot be resolved. We therefore need to address rather than eliminate uncertainty. One approach is to focus on arriving at a shared understanding of uncertainty so that a joint plan can be made. This is particularly important in areas such as the future course of illness, which will always remain, to some degree, uncertain (Etkind and Koffman, 2016).
In general, there are a number of communication tools to help structure care planning; for example, the evidence-based REDMAP (https://www.spict.org.uk/red-map/) guide recommends six steps — ensuring readiness for the conversation, exploring expectations, discussing and explaining diagnosis, asking what matters, determining actions and making a plan (Ekberg et al, 2021). There are fewer tools to support discussions about uncertainty specifically, and indeed, communication of uncertainty is a recognised evidence gap (Ellis-Smith et al, 2021). However, communication training has been shown to be effective in the context of advanced illness in general (Wilkinson et al, 2008), and courses such as Sage and Thyme (Connolly et al, 2010), or advanced communication courses are recommended.
Despite the lack of formal tools, there are certain aspects that are important to enable development of a shared understanding when communicating uncertainty. Firstly, uncertainty must be recognised; next, it should be acknowledged, and appropriately communicated in order to achieve a shared understanding. An evaluation of such conversations is important and they may need to be repeated.
Recognise
Recognising and identifying situations of uncertainty is a key part of the health professional's role. The health professional should consider important aspects of uncertainty: who is uncertain, what form does uncertainty take, and what domain(s) of the total uncertainty model does it lie in. As it is a subjective experience, uncertainty frequently exists beyond an individual, that is, a situation we do not see as uncertain can be experienced as uncertain by another. Hence, we should be vigilant to recognise others’ uncertainties as well as our own. Self-reflection may also be useful in recognising our own uncertainties.
Acknowledge
Given that uncertainty is a broadly shared experience in multimorbidity, it is usually appropriate to acknowledge uncertainty once it has been recognised. However, expressing our own uncertainty as health professionals must be carefully done, as casual statements of health professional uncertainty can be interpreted as incompetence and may reduce patient decision satisfaction (Politi et al, 2011; Mason et al, 2016). To avoid these interpretations, it is important to distinguish between what is uncertain due to lack of information (as per the blood tests in the example scenario in Box 1) and what is uncertain because it cannot be known (prognosis in the case). We do not yet have evidence-based approaches to support health professionals to acknowledge our own uncertainty to patients. What we do know is that people prefer honesty from their professionals and acknowledgement of when things are not known, which can be helpful. It is also important to acknowledge the emotional distress that uncertainty may bring (Ghosh and Joshi, 2020).
Communicate
Once acknowledged, the goal of uncertainty communication is rarely to eliminate it, but rather to explore its boundaries, and develop a shared understanding of the situation to enable care planning. Depending on the specific situation of uncertainty, this may be a brief and straightforward conversation, but in other scenarios, particularly future uncertainty, communication can be more complex and may require several discussions. Key to successful communication is knowing how the various participants in such a conversation respond to uncertainty. Patients and carers may respond to uncertainty passively by accepting it as part of their lives, or alternatively, may take steps to try and address it. Health professionals usually respond actively to address uncertainty, but in some cases, professionals actively avoid uncertainty and focus only on areas they can be certain of (Anderson et al, 2017). Each of these responses to uncertainty may require a different communication strategy. Communication must also take into account the awareness contexts of all involved (Glaser and Strauss, 1966; Stacey et al, 2019); for example, in a situation of closed awareness (where one participant is unaware of uncertainty) it would be important to ascertain what information the person wishes to know before raising uncertainty.
Evaluate
By their very nature, conversations about uncertainty may not end with a clear answer or conclusion. Therefore, it is important to summarise what has been said and evaluate the emotional impact of such a discussion (Ghosh and Joshi, 2020). Doing so can build trust and a trusting patient-professional relationship can go some way to alleviating the distress associated with uncertainty (Meranius and Engstrom, 2015).
Repeat
The illness trajectory in multimorbidity is unpredictable, and therefore, so are the uncertainties that are experienced (Etkind et al, 2022). Conversations about uncertainty are likely to be a regular part of the care relationship and be part of almost every healthcare decision. Rather than a separate ‘uncertainty conversation’, it is more likely that aspects of the above communication approach can be usefully integrated into many, if not most, routine care contacts.
What do we still need to know about uncertainty?
While we have a growing understanding of the uncertainties that are experienced in multimorbidity, and there are helpful approaches to communicating uncertainty, the question of how best to approach, communicate and address uncertainty has yet to be fully answered (Ellis-Smith et al, 2021). Interventions and tools to support conversations around uncertainty do exist, but it has proven challenging to identify who is most likely to benefit from them (Koffman et al, 2019). This has impacted on the use of such tools as: the Assessment, Management, Best Practice, Engagement Recovery Uncertain (AMBER) care bundle, which was designed for use in situations of uncertain recovery, but in one analysis was used mostly in situations of gradual predictable deterioration, that is, specifically when there was no uncertainty (Etkind et al, 2015). Optimal communication of uncertainty is the biggest unknown in this area; future work to explore how best to communicate uncertainty is important to enable us to deal effectively with an issue that exists within every clinical encounter.
Conclusion
When interacting with patients with multimorbidity, there is almost always an element of uncertainty for patients, carers and clinicians. These uncertainties can be distressing. All health professionals have a responsibility to recognise uncertainty in clinical encounters; taking time to recognise, acknowledge and communicate the uncertainties that we all experience, and to come to a shared understanding, is an important part of the consultation. This approach may lead to reduced anxiety and improved satisfaction with care. An important direction for future research is to develop ways to effectively communicate and address uncertainty.
Key points
- Uncertainty is ubiquitous in clinical encounters with older adults who have multimorbidity
- Uncertainty can be experienced in relation to appraising and managing multiple illnesses; fragmented care and communication; feeling overwhelmed; uncertainty of others and continual change.
- It is important to recognise and acknowledge patient and carer uncertainty; as health professionals, it is also important to be aware of our own uncertainties, which may be experienced in similar domains
- Careful communication is key, using phrases to demonstrate that uncertainty is an expected part of the illness; communication should be tailored to how individuals respond to uncertainty.
- Ensuring continuity and clarity with regards to care processes is one aspect of uncertainty that can be resolved; this requires a focus on clear inter-professional communication.
- We still do not know the optimum approaches to communicate uncertainty in multimorbidity and further research should seek to develop tailored communication strategies
CPD reflective questions
- What uncertainties have your patients raised in recent clinical encounters?
- Did these uncertainties match with uncertainties you were experiencing yourself?
- How do you approach uncertainty when you recognise it?
- Are some uncertainties more challenging to address than others?