Abstract
Delirium is highly prevalent in people with advanced life limiting illness(es), and current evidence can inform how we provide best delirium care in this setting. Whilst strategies to prevent and reverse delirium are the cornerstones of optimal care, the care for delirious patients who are approaching the end of life and their families pose specific challenges particularly if delirium is refractory flagging a grave prognosis. These include addressing additional supportive care needs, clinical decision-making about the degree of investigation and intervention, minimising distress from the symptoms of delirium itself and considering other concurrent problems contributing to agitation. A fine balance is needed to address other symptoms such as pain whilst minimizing psychoactive medication load. There is need for regular and clear information and communication about prognosis and goals of care. Witnessing a delirium episode in a loved one in close proximity to death requires consideration of the needs of the family into bereavement care.
Palliative care is person and family-centred care provided for a person with an active, progressive, advanced disease; who has little or no prospect of cure and who is expected to die, and for whom the primary treatment goal is to optimise quality of life. It is an approach which can be provided regardless of setting and diagnosis, and by both specialist palliative care teams and other health professionals.
Key points
Delirium is an important clinical issue at the end of life, contributing to symptom distress and impairing communication ability.
Delirium in advanced illness may herald a grave prognosis.
Distinguishing delirium in the person who is imminently dying with reversible delirium is a key clinical challenge.
Symptoms and causes of distress in the person with delirium at end of life are often multifactorial.
Clear information and shared decision making are needed for all elements of the management plan.
Delirium is an important clinical issue at the end of life, as the prevalence of delirium in the end of life period [1] (last weeks to days of life) exponentially increases [2]. On admission to palliative care units or hospices up to 40% of patients will have delirium, with the incidence after admission between 3 and 45% [3]. Closer to death these figures increase, with the median (range) period prevalence prior to death being 75% (58–88%) [4] [2, 3].
Delirium not only contributes to symptom burden and distress, it also adversely affects cognition, awareness and communication ability at a critical time when being mentally aware and interacting with loved ones is crucial for quality of life and highly valued by patients and family. Mental awareness is ranked highly by patients [5, 6], and there is disparity with 92% of patient participants rating it as a very important attribute compared to 65% of physicians. It also is essential for other important goals at the end of life, which included resolving conflict, saying goodbye to important people and shared time with close friends [5, 6]. Delirium also impacts informal carers, they experience significant distress witnessing delirium, have increased rates clinical anxiety, are impacted due to the increase in care needs of the person with cancer, and impacts may persist into bereavement [7–10].
Delirium screening remains important in the palliative setting and is aligned with the WHO definition of palliative care [11], which highlights the importance of early detection and impeccable assessment as a core mechanism for relief of suffering. This allows timely and proactive communication of the diagnosis, efforts to provide support and relieve distress, and in the palliative setting may herald the need for a conversation about a guarded prognosis. In people with advanced illness delirium is an independent predictor of mortality, and often signals the transition into the end of life period (hours to days) in palliative care patients [12]. It is also important to fully assess the symptom phenomenology, which is contributing to the person’s experience of delirium which will assist in determining an individualised management plan to relieve distress. These symptoms include functional decline, perceptual disturbance (misperceptions, illusions, hallucinations commonly visual and delusions), thought disorder, language difficulties (word finding difficulty, dysgraphia, dysnomia and paraphasia), altered affect (anger, irritability, depression, apathy, lability, fear and anxiety) and sleep-wake disturbance (reversal of normal sleep-wake cycle, dreams and nightmares and fragmented sleep). It is known from advanced cancer patients who have recovered from delirium that recall is common and distress levels high, with perceptual disturbance (particularly delusions) a significant predictor for patient distress, and functional decline the strongest predictor for caregiver distress [13, 14]. Level of distress was equivalent for people with hypoactive and hyperactive delirium [14]. The meaning families place on delirium also varies, including both positive and negative interpretation [9]. Families expressed the need for regular information, and loss of faith or guilt about treatment decisions occurred if health professional instituted treatments that they perceived may have added to delirium or caused other cognitive impairment such as sedation without partnership in those decisions [15]. Equipping families with the knowledge of what delirium is, its causes and how they can be involved in support is critical [16].
This raises the question, ‘What are the person-centred outcomes we are aiming to achieve for the person with delirium at the end of life?’ The humanising dimensions of care as outlined by Todres (2009) [17] provide us pointers of essential elements of care for the person with delirium at the end of life. Importantly, we need to provide agency through allowing the person to be an active participant in care, see them as unique rather than a diagnosis, and foster togetherness through interpersonal connection [17]. Embodiment (personal identity), sense of place (enhancing the physical environment to make people feel at home) and sense making through communication and information giving are also essential [17].
There is need for clarity and precision about how we communicate about delirium at the end of life. Words such as terminal restlessness or terminal agitation are non-specific terms and have placed those at end of life at risk of missing out on optimal delirium care underpinned by evidence [18]. We need to foster a safe place for interdisciplinary clinicians to discuss the possibility of a delirium diagnosis and raise potential differences in opinion about goals of particular therapies and perceived impact to the patient. For example, the medical team may have proceeded with active management of a potential delirium precipitant, such as an infection with intravenous antibiotics in consultation with the patient and proxy decision-maker, but the nursing staff who are witnessing distress of the cannulation process for a patient who they view as imminently dying may have come to a different conclusion of what optimal management would be.
One of the most challenging clinical quandaries, even for the experienced clinicians, is determining if the very unwell person with advanced disease and delirium is imminently dying or whether they have a reversible delirium; and in many cases at the bedside these two populations can present very similarly. Even in the specialist palliative care inpatient setting, on average half of delirium episodes are reversible, with hypoxia, infection, severe cognitive or organ failure associated with high irreversibility [4, 19]. The decision on whether to attempt active treatment of delirium precipitant(s) or not is a fine balancing act, considering potential benefits and harms, and the likelihood of reversibility of the clinical event in question (Figure 1). The ‘Why framework’ [20] offers a useful framework in clinical practice which suggests we ask “is this person unwell today because of overall progression in (maximally) treated disease? or ‘Is this person unwell today because of the effects of an acute problem with an easily reversible cause?”
It is important that we assess in each individual case what the patient themselves might consider ‘burdensome’ and what their expressed preferences and wishes have been. In some cases, a ‘time limited’ trial of treatment, with a clear timeframe for reassessment of signs of improvement may be useful. During the conversation about treatment decisions of intercurrent problems in palliative patients, it is important to take time to understand the relative priority of maintaining cognition for the person. It is recommended to include the potential risk of delirium or the impact of intervention on delirium resolution when supporting people in making decisions about treatments such as antibiotics, parenteral fluids or management of hypercalcaemia; as this may influence the preference a person has for pursuing a more or less active approach to their management and without such information they cannot make a truly informed choice. Even if active treatments are not instituted, the clinical diagnosis, even if this is solely on history and examination at the bedside, assists in providing a clear explanation for why delirium has occurred, and the reason that delirium is likely irreversible.
A recent review of populations in published studies of multicomponent nonpharmacological delirium interventions found that though palliative care patients were formally excluded, the illness trajectories, clinical features and high mortality rates suggest that many included participants were indeed patients at the end of life [21]. The ability of palliative care patients to participate in such interventions and whether similar magnitude of impacts are possible has not been evaluated comprehensively to date, so it is reasonable to take a personalised approach, adapting measures/strategies to the individual where necessary [21]. It is important to consider the best location of care, balancing the need to support carers as caring for the person with delirium is a 24 h task due to nocturnal symptoms, balanced with the ability of a familiar home environment to minimise distress and symptoms. In many instances, symptoms are multifactorial, or may be unrelated to the delirium; for concurrent issues such as urinary retention, constipation, pain, anxiety and discomfort due to inability to move independently in the bed. A thorough medication review, and consideration whether the pharmacokinetics (e.g. new onset renal impairment) or pharmacodynamics of existing medications has changed is important. It may be possible for psychoactive medications to be stopped, dose reduced or swapped to less deliriogenic alternative without compromising pain and other symptom control.
Decision-making for active treatment of potential delirium precipitants.
Before the institution of any pharmacological strategy, it is important for a careful assessment of the causes and degree of distress, the patient’s and/or family’s interpretation of the symptoms and signs, and have made an assessment of whether the agitation is more distressing than the possible distress caused by the potential sedation and loss of meaningful communication, which could occur from a pharmacological approach. This should be considered both at the time of prescribing, but also re-assessed when administering as needed medications. In palliative care populations, there is limited placebo-controlled trial data to inform clinical practice. One study found higher target symptoms (inappropriate communication, behaviour or perceptual disturbance) were found in participants who received oral haloperidol and risperidone in comparison to placebo after 72 h of treatment [22]. Another study of advanced cancer patients in the last days or weeks of life, with agitation and delirium despite scheduled haloperidol, showed reduction in agitation (with associated sedation) with the addition of a single dose of intravenous lorazepam compared with placebo after 8 h [23]. Pharmacological approaches should never be in isolation, with concurrent nonpharmacological approaches and information and support crucial [24]. As with any medication therapy, net clinical benefit needs to be considered. Delirium at the end of life which requires a pharmacological approach should be considered a medical emergency, and as such it is important to have senior clinician input, to determine what the target symptom(s) are and consideration of unintended side effects, which could contribute further to the constellation of cognitive symptoms which makes delirium distressing.
In conclusion, the principles of person-centred palliative care go a long way to providing an excellent framework to underpin excellent delirium care. Meticulous assessment and an interdisciplinary approach allows an individualised plan of care, which can both minimise distress and optimise mental awareness at the end of life.
Declaration of Conflicts of Interest
None.
Declaration of Sources of Funding
None.
Comments