There has been significant scrutiny over the years regarding making a clinical judgement as to when someone is entering the terminal phases of life, yet little clarity exists for clinicians regarding what is required to make this decision (White et al, 2018). Within the role of the advanced clinical practitioner (ACP) in palliative care there is an expectation to offer guidance and support to individuals and families, as well as junior medical and nursing staff, regarding the changing phases of illness. This responsibility is grounded in advanced clinical practice within the four pillars of advanced practice (Health Education England (HEE) et al, 2020). The author's own experience in practice indicates that the subjective and emotive journey for palliative care patients with conditions at an advanced stage has key indicators including loss of mobility and reduced consciousness; nurses providing patient-facing care are often aware of key prognostic indicators of a patient's deterioration before medical colleagues. When combined with a medical assessment the practitioner is able to provide a clearer indication of when a patient is entering their terminal phase of life and the adjustments needed to support their care.
Critical thinking and clinical judgement
It is important to be objective in the approach to patient assessments as a patient's extrinsic presentation may not always correlate with a practitioner's expectation following a review of their investigations/test results (Schwartz and Griffin, 2012). Corrao and Argano (2022) also factored in the influence that emotional intelligence has on the ability to make objective decisions while maintaining empathy in a contextual approach to formulating a treatment plan. The idealistic approach for palliative care may not suit a person's expectations of their symptom management needs. The ACP in palliative care provides expert nursing insight to the assessment process and supports the junior medical team members who may not have the experience within specialist palliative care. The role supports them in being able to take a step back in practice and supports the metacognition that permits clinicians to ‘think about their thinking’, recognising the inconsistencies in clinical judgement and how to interpret unexpected findings (Higgs et al, 2019). It requires the ability to rationalise and synthesise data (Croskerry, 2022). The critical thinking process can be influenced and hindered by emotions, assumptions and bias. Heuristics provides strategies to efficiently process data, short-cutting irrelevant information through previous experiences (Thompson and Dowding, 2002). The emotive influences on the decision-making process must be acknowledged, to then build strategies and overcome them influencing the outcome (Alfaro-LeFevre, 2019). The ACP role supports grounded clinical practice, being able to have senior oversight of what can often be complex clinical scenarios.
Case study
The case study explored here concerns a 56-year-old female, married with two adult children. She had been diagnosed, 18 months previously, with a uterine sarcoma with lymphatic, bone and liver metastases and necrotic mass in left adductor muscle. The disease had progressed through multiple cycles of chemotherapy and radiation treatment. Uterine malignancies account for 3% of female deaths and 5% of the total of malignant diagnosis in females (Cancer Research UK, 2023). Her past medical history included obstructive sleep apnoea and depression.
The person presented with restlessness, worsening pain, reduced mobility, paraesthesia to left leg, constipation and new-onset urinary incontinence. A deep vein thrombosis had been excluded prior to assessment following onset of left leg oedema. She person reported banding to has abdomen, with a sensation like a ‘tight belt’. The presenting symptoms were progressive over 2 weeks, and she was bedbound for 72 hours and nauseated for 48 hours.
The person continued to decline at home and due to a family breakdown it was not sustainable for her to remain at home. A collaborative decision between the nursing, oncology and medical team was made to admit the person to a hospice inpatient setting for an urgent assessment with consideration for transfer to the local acute care facility following investigations, if appropriate. This is an approach advocated for individuals in the palliative setting with significant symptom burden (Osborne and Kerr, 2021).
Exploring the clinical picture: really listening to the patient
Vreugdenhil et al (2021) explored the similarities between medical and nursing approaches to clinical reasoning, highlighting that professions should work collaboratively to enhance care. The framework from HEE et al (2020) is clear that advanced nursing practitioners should be systematic, adaptable and empathetic to the person.
There are seven types of reasoning that play a role in drawing conclusions and constructing explanations. The dual–process clinical reasoning model looks at ‘type one’ and ‘type two’ thinking. Type-one thinking or rapid decision making is intuitive but vulnerable to error. Current nursing practice demonstrates use of this method when reviewing the person in severe pain, given the need to intervene and treat the pain to allow them to be assessed thoroughly and support the person and family.
The ACP offers a skillset that has wider insight into the complex symptom management required in these scenarios, drawing together nursing experience and maximising this alongside taught medical knowledge and skills. Effectiveness of this combination has been aligned with medical professionals (Kennedy and Connolly, 2018). This can, in the same situation, move on to type-two reasoning, which is systematic – analysing a situation, trying to rationalise why it has happened, with a less emotive stance (Hughes and Nimmo, 2022).
In current palliative care practice, patients are presenting with increasingly complex situations, and it is important to bear in mind that the journey is unique to each person. Exploration of metaphors a person uses to describe their symptoms is complex and can influence the unconscious recognition of symptomatic patterns. With a limited evidence base in the palliative care setting it can be easy to formulate preconceptions of key presentations, particularly when clusters of symptoms fit a previous experience. The ACP role encourages curiosity to understand the ‘why’ and ‘how’ of patient symptoms, while still respecting patient autonomy in their ceilings of treatment. Featherston et al (2020) carried out a systematic review of health professional bias and the external and intrinsic factors influencing decisions, finding that these biases can occur up to 77% of the time – these can influence healthcare decisions because of information that is omitted or not examined. How to overcome bias in practice requires further study. It has been suggested that around 80% of a diagnosis can be obtained through a thorough history taking and listening to the patient (Keifenheim et al, 2015). Systematic assessments ensure professionals do not overlook something outside the norm (Fairhurst and Clegg, 2018: 362).
Within the hospice setting the ACP role-models the nursing-medical approach to patient care through professional curiosity. Experience in practice can provide practical reassurance and strategies to take ownership of a situation, providing essential support in highly emotive situations. Smith et al (2022) pointed out that mastering the skill of diagnostic reasoning, a subset of clinical reasoning, provides clear distinction between registered nurses and the autonomous practice of the ACP (following more of a medical model). Corrao and Argano (2022) explored the implications of clinical reasoning on diagnosis and the errors that may follow in treatment instigation within the medical setting. It is thought that diagnostic errors occur 10-15% of the time, and these have the potential to lead to significant harm from inappropriate treatment choices due to missed, incorrect or late diagnoses, however, the risk can be mitigated through use of collaborative working and evidence-based practice (Cooper and Frain, 2022).
Corrao and Argano (2022) expanded the role of clinical reasoning to support not only diagnosis but also prognostication, an area in palliative care that prompts a great deal of debate but offers little reassurance for relatives. Often, relatives want to quantify someone's disease trajectory and deterioration. There is no objective way to measure a clinician's prognostic instincts particularly when there is significant weighting on treatment decisions, in the consideration of the person's disease trajectory (White et al, 2018). The person in this case study had the preconception that ‘hospice’ had meant end of life. Time was spent understanding what their priorities were for escalation of care and breaking down barriers. Innes et al (2018) are clear that the assessment process can be emotive, particularly when exploring a person's insight. The person was able to indicate that they were keen to try to ‘reverse the reversible’.
While assessing the person the practitioner must engage in active listening and be empathetic to the emotional journey the individual is experiencing (Donnelly and Martin, 2016). Consideration of the cognitive symptoms experienced could not be discounted as irrelevant to the differential diagnosis. The symptoms were transient but important to ensure that the person was able to consent to the assessment and it was felt that all information had been elicited correctly. The person had been in control of their care prior to admission and had seen several different health professionals, however, they had not voiced all of their concerns to these professionals.
The physical assessment was indicative of multiple differential diagnoses. Clinical guidelines to support practice in the palliative care setting often need an augmented approach considering the patient's wishes for treatment intervention, therefore changes to standard protocols are often based on senior peer insight and anecdotal evidence due to the challenges of palliative care research. The use of clinical judgement is needed as guideline recommendations do not always lead to a successful outcome (Health Improvement Scotland, 2022). ‘To err is human’ and individuals should be empowered to ask questions around their care to be kept informed of the diagnostic process (Institute of Medicine, 2000). Discussions were had with the person and their partner around risks/benefits of treatments and investigations. Often a conversation had in specialist palliative care is ‘what will we do with the results?’. The ACP can help facilitate the provision of information with higher-level decision making. It was important for the person to explore potentially reversible causes due to the symptom burden and her own priorities based on the impact on her quality of life.
Uncovering red flags: spotting and treating venous thromboembolism
Olson et al (2021) explored the consideration that the volume of undifferentiated symptoms individuals present with in primary care can mask red flag symptoms. The ACP must be able to objectively review the differential diagnosis and think flexibly to find an appropriate solution for the patient (HEE, 2020). Situational considerations also impact the potential for diagnostic error as well as the external influences of clinicians' emotions and time constraints (Figure 1). With multiple possibilities to consider, the decision was made to try, where possible, to group investigations together.
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The person's presentation revealed multiple ‘red flags’ for a pulmonary embolism (PE) including tachycardia, hypoxia, pleuritic chest pain and an active cancer diagnosis. The causative factors for a PE include trauma, hypercoagulopathy and venous stasis, which form ‘Virchows Triad’ (Noble et al, 2022). One-third of venous thromboembolism cases present as PE and people with active cancer account for 22% of these (NICE CKS, 2023). The risk factors for patients vary with types of cancer including lung, haematological and brain cancers carrying greater risk. A significant degree of immobility has been demonstrated for longer than 5 days in 28% of those with a confirmed PE (NICE CKS, 2023). Although the person had a deep vein thrombosis excluded prior to admission, it has been noted that 45-50% of those diagnosed with a PE have a concomitant DVT (NICE CKS, 2023); therefore, it is an important area to exclude through working differential diagnosis. Physical assessment is key in excluding other differential diagnoses with a similar presentation including pneumonia or problems of cardiac origin.
Within this hospice setting scans are arranged in the acute setting and transport is required. As the ACP working within the medical team this places the ACP in the best position to navigate the healthcare systems, advocating and breaking down barriers for the person in their care, which can include preconceptions from the acute setting as to the role of the hospice in supporting complex symptom management. The person was stable enough to wait for an urgent scan the following morning. Where possible, interim anticoagulation should be offered until confirmation of PE, in line with the clinical guideline from the National Institute for Health and Care Excellence (NICE) (2023). The Two-Level Wells score (Table 1) is used to assess the likelihood of a PE. The sensitivity of the score is up to 98%, however, the specificity is below 60%, which can mean that it should not be the sole diagnostic modality (GPNotebook, 2020). The person scored 11.5 indicating that a PE was likely.
Clinical indication | Score |
---|---|
Recent surgery or immobilisation | 1.5 points |
Cancer | 1 point |
Symptoms of haemoptysis | 1 point |
Clinical signs that heart rate >100 beats/minute | 1.5 points |
Clinical signs of DVT | 3 points |
Clinical judgement that there is an alternative diagnosis less likely than PE | 3 points |
Predisposing factors including a previous DVT or PE | 1.5 points |
Total (out of 12.5) | PE unlikely 0–4 points |
DVT=deep vein thrombosis, PE=pulmonary embolism
The conflict in palliative care lies in exploring when the treatment burden outweighs the benefit and when in the person's disease trajectory anticoagulation should be stopped as the person approaches the terminal phases of life (Noble et al, 2022). Local guidance from the author's trust on VTE risk assessment in palliative care was followed in conjunction with advice from the NICE website and in collaboration with the person and the medical team. Potential interactions from polypharmacy were identified and a risk-based approach was implemented, trying to balance the management of a high symptom burden including the use of steroids and anticoagulants concurrently. There is an increased risk of gastrointestinal bleeding, which is then further compounded in those with advanced cancer (NICE CKS, 2024)
The cost implications for investigations considers the number of bed days required to support a person until they are stable to be managed in the community. The added complexity for the person in question was the number of differential diagnoses being investigated concurrently. Being able to assess the patient within the acute setting provided the ACP with some oversight and observation of the symptom burden they were presenting with.
Reconsidering the working hypothesis: extrapyramidal side effects of drugs
It has been argued that you only have the right diagnosis when the person responds to treatment (National Academies of Science, Engineering and Medicine, 2015), and O'Sullivan and Schofield (2018) acknowledged the importance of diagnostic momentum, cautioning against continuing a treatment just because it was started by a colleague, being able to take a step back and look at the situation as an individual advanced clinician and not being afraid to change the plan if clinically indicated. The ‘Swiss Cheese Theory’ describes a systematic failure of processes, where errors can occur despite multiple aspects of safety netting (World Health Organization, 2019). Diagnostic errors represent an ongoing challenge and complex issue with no simple resolution (NHS England, 2025)
The person had been restless and unable to settle throughout the physical examination. The emotional impact of the hospice admission was acknowledged but the person still struggled to rationalise the feeling of restlessness. Experience in practice has taught practitioners not to overlook any aspects of a person's presentation regardless of its failure to fit with the current hypothesis. It is necessary to hold the question in mind of the differential diagnosis and how individuals may or may not respond to treatment, not being guided by the obvious or blind-sided by the rare even if this does not fit the working hypothesis (Hirsch, 2020). The ACP models this approach throughout their autonomous clinical working under the support of the medical team. Synthesising the data allows for complex reasoning of the risks/benefits within the context of multiple hypotheses, having rationalising the rationale for each (Corrao and Argano, 2022).
In the author's area of work an increase in the prevalence of extrapyramidal side effects (EPSE) has been observed. EPSE is a spectrum of drug-induced movement disorders due to the antagonistic effect of the drug on the dopamine D2 receptors, which are required for movement control and co-ordination (NHS Greater Glasgow and Clyde, 2024). The presenting symptoms of EPSE include akathisia, tardive dyskinesia, bradykinesia and dystonia, however, the severity and combination cannot be predicted, because they vary between individuals and are not always dose-dependant (Joint Formulary Committee, 2025). Collectively, as a multidisciplinary team, this increased prevalence has been discussed, seeking to understand the possible reasons. It is possible this could be due to increased exposure to the symptom burden and the implications for individuals and families in practice, and also that advanced practitioners and medics are better able to recognise the symptom set. Ishiki et al (2020) aimed to identify the prevalence of EPSE in the palliative care population but found there were significant difficulties in identifying where symptoms were purely drug-related and not arising from a malignancy itself causing misfiring of dopamine signals.
There are several factors relevant to the person considered in this case that increased the possibility of experiencing EPSE, including gender, documented cognitive impairment and previous mood disturbances (O'Brien et al, 2019). O'Brien et al (2019) reflects current practice, in that there is no routine screening on admission to the palliative care units for those at risk of akathisia. It is good practice to be cautious when introducing drugs that have the potential to cause EPSE (Table 2). It is important to highlight that the list is not exhaustive and individual tolerance needs to be considered. Formulating a working diagnosis for this person was based on experience in practice.
Class | Drug |
---|---|
Antiemetic |
|
Antidepressants |
|
Calcium channel blockers |
|
The person reported that the burden of the restlessness outweighed the nausea and therefore the medications suspected to be causing akathisia (metoclopramide and levomepromazine) were ceased. To counteract any subsequent nausea ondansetron was prescribed. An open and honest conversation with the person and family was held because, despite the professional opinion that the EPSE could have been caused by the combination of antiemetics, evidence indicated that tardive dyskinesia, an involuntary movement of lips and face, was observed even after the drug therapy had stopped. This may be irreversible (Joint Formulary Committee, 2025).
The balance for treatment of the symptom over drug cessation is informed by the distress to the individual caused by the symptom (Wilcock et al, 2020). The person remained distressed by the symptom burden and therefore the decision was made to treat with oral procyclidine 2.5 mg three times daily. Procyclidine is indicated for use in Parkinson's and where there is drug-induced akathisia, alleviating the symptom by potentiating the dopamine via blockade of the cholinergic effect (Mylan, 2023). There was little relief observed from the treatment prior to a rapid decline of the person's condition. Where there is no palliation of symptoms it can be necessary to consider the use of benzodiazepines, such as midazolam, as an adjuvant to symptom management, in order to relieve the distress of the akasthisia (severe restlessness) (Pringsheim et al, 2018)
Outcomes
The person's presentation led to a working hypothesis of many differential diagnoses. The CT pulmonary angiogram scan confirmed the presence of a PE and confirmed that the person was on the right treatment path of an anticoagulant (low molecular weight heparin) for more than 1 month until they entered the final 48 hours of life. There were no further incidences of suspected thrombosis. The MRI was negative for malignant spinal cord compression, however, both scans confirmed the presence of disease progression in the peritoneal cavity with partial bowel obstruction. The treatment plan was adjusted to allow for reduction in symptom burden and risk of side effects from unnecessary polypharmacy, while balancing risk and uncertainty. Emphasis is placed on continually reviewing the process through hypothetico-deductive reasoning and use of hermeneutic examination of the facts, results and non-verbal cues from the person (Gladstone, 2012). The presence of EPSE partially resolved with the treatment plan but the person's condition continued to deteriorate. It was important to support the person and family as their care moved away from further investigations and focused on comfort and symptom management.
Conclusion
The presentations of patients in palliative care can provide multiple differential diagnoses. The challenge for the ACP in practice is to be able to review and work with the patient to discuss the best course of treatment, or not, in line with the person's autonomy and disease trajectory. The use of a hypothesis is forward thinking and rational but needs to allow for experiential learning to be applicable in practice (Gladstone, 2012). As the senior nurse in the organisation the ACP models the decision-making processes. The role of advanced practitioner in the palliative setting is key to supporting the individual through changing phases of illness and supporting staff with education while ensuring patient safety at all times. The role provides expert nursing insight to follow through from assessment, diagnosis and treatment management and review, challenging boundaries and breaking down barriers within a specialism that is continually evolving to support patient need.