Chapter 14

Symptom management at the end of life

Jane L. Phillips and Meera R. Agar

Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney, Sydney, Australia.

Correspondence: Jane L. Phillips, Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney, P.O. Box 123, Ultimo, Sydney, NSW 2007, Australia. E-mail: jane.phillips@uts.edu.au

Adults with advanced respiratory disease have significant symptom burden at the EOL, which is comparable to, if not greater than, the symptoms experienced by people dying from cancer. These patients also experience poorer quality of life and significant social isolation as a result of their symptom burden, yet are less likely to be referred to specialist palliative care services than patients with cancer [1, 2]. Drawing from the palliative care guidance statement from the American Thoracic Society [3], this chapter focuses on the EOL care that can readily be provided by the patients’ usual care team, and outlines when referral to specialist palliative care is indicated. It details the importance of clinicians responding to the unpredictable respiratory disease trajectory and the changing needs of the patient and family as death approaches. An overview of the best evidence-based pharmacological and non-pharmacological symptom management strategies for adults dying of advanced respiratory disease, whose prognosis is measured in days to hours, is also provided. This chapter also touches briefly on the care needs of those whose death is sudden (i.e. sudden cardiac death, massive haemoptysis or acute pulmonary obstruction) and the bereavement requirements of their families.

Defining EOL care

While chronic respiratory disease increases the risk of sudden cardiac death [4], the majority of patients will die an anticipated death. Globally, the term “EOL care” has been used variously to describe the final stages of a person’s life. The time period that “EOL” encompasses has been variably defined, ranging from the last 12 months of life to the final hours or days of life [3]. For the purposes of this chapter, EOL care refers to the care and support that dying patients and their families require in the last days and hours of life. As described in another chapter of this Monograph [5], all clinicians have a responsibility to provide primary palliative care, i.e. to provide the necessary physical, psychological, social and spiritual care that advanced respiratory disease patients require at the EOL to optimise their comfort and that their families require to have better bereavement outcomes. If the patient has complex EOL care or their care exceeds the expertise of the interdisciplinary respiratory teams, then referral to the local specialist palliative care team is indicated [6].

Recognising dying and managing the terminal care transition

People living with advanced respiratory disease face the usual challenges of daily living but in a context of increasing exacerbations and deepening dependency as activities and mobility decrease, and their life becomes increasingly confined [7]. Reduced FEV₁, increased breathlessness, reduced physical activity and an increased number of hospital admissions in the past 2 years are all hallmarks of a terminal respiratory disease (table 1). Any one of these acute exacerbations may be a terminal event. The risk of sudden death within 5 years of a COPD diagnosis increases in patients with frequent exacerbations [4]. Faced with a sudden death, the focus of care during these final hours or minutes of life is on minimising the distress and suffering of the patients and their families.

Although acute or chronic respiratory failure is the final common pathway for many patients with advanced respiratory disease [8], too few will have been provided with an opportunity to discuss their EOL care preferences prospectively and to plan accordingly. In high-income countries, the majority of patients now die in hospital, and many receive medically futile, unnecessary and potentially distressing care [9]. A survey of patients with advanced COPD found that less than one-third (32%) had discussed the care they would want in the event that they were unable to communicate their wishes to their treating physician [9]. Clinicians’ reluctance to discuss prognosis contributes to the limited understanding of patients and families about their illness trajectory [3]. Failure to plan also leads to patients receiving care that they may otherwise have declined, especially as a proportion may spend their final days ventilated in the ICU or requiring NIV [7].

In clinical situations where the patient has not responded to maximum treatment, and a decision has been made to withdrawal mechanical ventilation or NIV with the expectation that death will follow, clinicians need to communicate to the family the expected symptoms, the time course for deterioration and the expected time to death after withdrawal [10]. Consideration should be given to the likely symptoms that may occur after extubation based on the clinical situation of the individual, in particular the occurrence of breathlessness, and it may be necessary to commence opioids and sedative medication prior to and/or during the withdrawal process, titrating to effect [11].

For most clinicians, dying is viewed as a nonreversible physiological process or a series of negative physiological events from which the patient cannot recover [12]. Recognising when patients have only days or hours to live continues to be challenging for many clinicians, especially given the somewhat unpredictable course of advanced respiratory disease. The dying patient is typically profoundly weak and essentially bed-bound. For much of the day, they can be drowsy and disorientated to time, with a severely limited attention span. They are increasingly disinterested in food and water, and find it difficult to swallow medication [13]. There may also be periods of apnoea and/or Cheyne–Stokes respirations, audible respirations, and/or mottling or cyanosed extremities. Considering these changes within the context of each individual patient helps identify when they are dying.

While much attention has been placed on prognostic tools and clinical markers, these measures cannot be reliably applied in everyday clinical practice [3]. The variable effectiveness of new therapeutic interventions adds to the challenges associated with prognosis.

Ruling out all reversible causes needs to be individualised and requires balancing the burden and risks associated with additional diagnostic tests or treatments. Understanding that some palliative treatments aimed at symptom control may also result in an improvement in the patient’s condition requires a preparedness to tailor the goals of care to the patient’s condition and their values/wishes, and to respond accordingly. Communicating with patients and families about these uncertainties is central to optimising EOL care outcomes [12]. The familiarity, understanding and trust that many long-term doctor–patient relationships have established provides a solid foundation for the respiratory physician to take the lead in sensitively initiating and facilitating EOL discussions with their patients and families. The patient’s deteriorating status signals the need to reappraise both the patient’s and their family’s care and support needs, to avoid medically futile treatments and to be prepared for the remote possibility that, if the patient’s condition improves, they will be afforded the opportunity to recover [14]. Managing these uncertainties in conjunction with providing optimal EOL care requires the treating physician to commit to continuously assessing their patient’s symptoms, optimising symptom management, minimising distress, and facilitate appropriate and timely communication with the patient, their family and the interdisciplinary team [4].

Confirming the preferred place of death is required, as this location may differ from the patient’s and/or family’s preferred place of care [15]. If an advance care plan has not been completed previously, then seeking agreement and documenting the goals of care in accordance with the patients’ wishes and preferences is a priority, making sure that their cardiopulmonary resuscitation orders are clearly documented and conveyed to the interdisciplinary team.

Families also need clear and regular explanations about the symptoms and signs to expect during the dying process, particularly as, for many, this will be the first death that they have witnessed. They also need to be aware that cardiopulmonary resuscitation offers little benefit for dying patients and may cause more harm and discomfort. Preparing for these conversations makes it easier for clinicians to confirm or elicit the patient’s and family’s preferences, provide the necessary information, acknowledge concerns, and provide realistic hope and reassurance that the patient’s comfort will be maximised [16]. Reassuring families and friends about the teams’ commitment to providing comfort is crucial for minimising distress and suffering.

Management of common symptoms

A palliative approach to care is recommended and needs to have been initiated long before the patient is dying [3]. The range of symptoms that patients living with advanced respiratory disease experience during the last days and hours of life can largely be managed by their interdisciplinary respiratory team. A number of international guidelines detail the palliative management of patients with advanced respiratory disease; however, few provide guidance for managing the last days or hours of life [15]. In addition to attending to the patient’s physical needs, providing psychosocial and spiritual support to both the patient and family becomes increasingly important as death nears. Not being burdened by symptoms is one the major EOL care concerns of patients and their families.

Polypharmacy is common in patients at the EOL. Rational deprescribing of nonessential medication(s) (i.e. statins, hypoglycaemics, antihypertensives and anticoagulants) is also indicated at this time [17]. If maintenance of specific medications is indicated, changing the route of administration or drug may be required once the patient has difficulty swallowing.

Optimising the management of EOL symptoms is a key element of effective EOL care. A brief overview of the current evidence for the management of EOL symptoms experienced by patients dying from advanced respiratory disease is detailed below.

Breathlessness

Breathlessness (dyspnoea) is a complex, subjective symptom that is almost universally experienced by people dying of advanced respiratory disease. Nearly all (95%) patients with COPD experience breathlessness, and it is also common in patients with lung fibrosis, heart failure and terminal cancer. Breathlessness increases as death approaches [18]. Regular screening is needed to detect the presence of breathlessness, using the 11-point NRS to determine intensity, unpleasantness and/or distress. The presence of breathlessness on screening should prompt further assessment. Clinical judgement needs to be used to select the best assessment tool, as there is no one tool that has been validated in a dying COPD population, and patients will vary in their capacity to self-report, in particular if their level of consciousness or ability to talk in sentences is impaired [19]. It is important to note that observed signs (e.g. tachypnoea) do not necessarily correlate with the perceived breathlessness, so self-reporting, wherever possible, assists in optimising symptom management. When the person is no longer able to self-report, understanding how observed signs had correlated previously to their symptom experience can also be helpful information.

In terms of pharmacological management, oral or parental opioids are the only medications that impact positively on breathlessness [20]. There is good evidence that opioids, if carefully titrated, are safe to use in this population [21]. Many patients will already have been prescribed opioids, so once they are unable to swallow, their usual opioid dose needs to be converted to an equivalent subcutaneous dose (e.g. using the eviQ online Opioid Conversion Calculator at www.eviq.org.au). For the opioid-naïve patient, small doses of parenteral (subcutaneous) morphine of 1–2.5 mg can be given regularly (frequency of 4 hourly) for breathlessness (and/or pain), with access to as-required doses for breakthrough and titrated for effect. A subcutaneous continuous infusion of morphine over 24 h may be considered once the dose requirements are stable, which can minimise the need for frequent dose administration, in particular if the person is being cared for at home by family.

However, there is no evidence that nebulised opioids are any better than nebulised saline [20]. It is also important to consider the possibility of acute changes in renal function, and to alter opioid dosing or the agent accordingly to avoid acute accumulation. Although they are widely used, there is no evidence that benzodiazepines relieve breathlessness in patients with advanced respiratory disease. Given their adverse side-effects, benzodiazepines should only be considered if opioids and all other non-pharmacological interventions have failed to relieve the patient’s breathlessness [22].

There is also limited evidence for the feasibility and usefulness of NIV at the EOL for comfort and to minimise adverse effects [23]. Oxygen therapy is helpful for reducing breathlessness in advanced respiratory disease patients with hypoxaemia [3]. If oxygen is indicated, the use of nasal prongs at the EOL may be more appropriate than a mask. Regular mouth care is required to minimise the drying effects of oxygen. If the patient is still conscious, giving them small chips of ice also helps keep their mouth moist. Teaching and supporting families to attend to the patient’s mouth care in between routine care ensures that their mouth remains moist and clean. Other non-pharmacological approaches that are comforting include raising the head of the bed so that the patient’s head and torso are elevated or positioning the patient with the affected lung downwards. Positioning the patient near an open window or placing a fan in the room may also provide some comfort.

Pain

After breathlessness, pain is the most commonly experienced EOL symptom. Unrelieved pain is the symptom that most patients fear and is the one symptom that bereaved families perceive to have been managed ineffectively [24]. Routinely assessing dying patients using a validated screening tool, such as the NRS [25], and undertaking a comprehensive pain assessment using a validated tool, such as the Brief Pain Inventory, is required to prevent the patient’s pain from being undetected and unrelieved [26]. If the pain is new, differentiating between nociceptive and neuropathic pain enables the most appropriate pain management plan to be initiated. Most pain(s) can readily be controlled with an appropriate individually tailored analgesic regimen, which may include simple analgesics, opioids and/or non-pharmacological interventions, while more complex pain will require the input of the specialist palliative care or pain management team.

Respiratory secretions

Respiratory tract secretions are common and are predictive of imminent death within hours to days. The prevalence rates for respiratory tract secretions vary, with most available estimates generated for cancer patient populations [27]. Impairment of effective swallowing and coughing reflexes causes secretions to accumulate in the pharynx and/or airways [27]. It is thought that respiratory tract secretions are more common when pulmonary pathology exists, such as infection or lung cancer [28, 29]. It is unclear whether patients perceive the presence of respiratory secretions as distressing [27, 29]. Experiences from families who have witnessed the patient’s respiratory secretions at the EOL also vary, but at least half found this symptom to be distressing [30, 31]. Health professionals providing care, as well as other patients, may also find the sound distressing [27]. Interpretation is influenced by the patient’s appearance, and whether families believed it indicated that the person was drowning or choking [31]. Some families understood it as a useful warning sign that death was imminent [31]. It is important for families to be prepared for the possibility of respiratory secretions, and also for clinicians to spend time dispelling unfounded fears [27].

There is currently no evidence that pharmacological intervention with antimuscarinic medication is superior to placebo in the management of respiratory secretions [27, 32]. Studies that have been conducted have been limited to cancer, have lacked placebo controls, are unable to establish if the reduction in noise intensity is associated with a change in the patient’s experience, and vary in the degree of objectivity of the measurement efficacy measure [32]. If a choice to use anticholinergics is made, it is critical that they are regularly re-evaluated for therapeutic benefit and adverse effects. They should be discontinued if there is no benefit and/or there are side-effects that are likely to be associated with greater patient distress [32]. Anticholinergic medications are commonly associated with side-effects such as dry mouth, urinary retention and delirium [27]; however, these effects are frequently under-recognised, as patients at the EOL are usually semi- or unconscious.

Avoidance of the use of parenteral hydration to prevent or reduce secretions is also an unestablished practice. Therapies to treat increased sputum production, purulence, and lower respiratory tract infections refractory to antibiotics and other treatments are yet to be evaluated for COPD patients in the EOL phase. It is unclear whether antibiotics offer symptom relief in this situation [33].

Non-pharmacological interventions, such as repositioning or removal of secretions by oropharyngeal suction, have also had minimal evaluation but can be considered in individual circumstances [32]. Most interventions are unable to eliminate existing secretions completely [27]. Indiscriminate use of anticholinergics is not supported, but current evidence, and careful and ongoing explanations to relatives covering the cause and implications and also addressing their fears about the secretions, should be the focus of care.

Delirium

Delirium is a recognised medical complication of serious and advanced illness. Delirium prevalence has been reported to be as high as 88% in people in the days to hours before death [34]. The clinical features of delirium develop acutely and fluctuate over time; they include disturbed consciousness, attention and awareness, disorientation, perceptual disturbance, sleep–wake cycle abnormalities and psychomotor disturbance (agitation or hypoactivity) [35]. Delirium in this setting is often a result of irreversible factors such as multiorgan failure, refractory infection or metabolic abnormalities [36]. However, even in the setting of irreversible delirium, it is important to review possible contributing factors (e.g. psychoactive medication, urinary retention, constipation or uncontrolled pain), which may make delirium symptoms worse, in particular if the issue is still amenable to simple noninvasive treatments. It is important to avoid nonspecific descriptive terms as diagnoses (e.g. terminal restlessness, terminal agitation), and instead to consider the specific differential diagnoses as much as is practicable, although it is acknowledged that this can be challenging. Differential diagnoses may include other uncontrolled symptoms (such as pain), urinary retention or constipation, seizures and metabolic causes of myoclonus, all which have specific approaches to management.

There is no current evidence that parenteral hydration improves delirium symptom control, and a change in opioid or a reduction in dose is only recommended where there are clear indications of opioid neurotoxicity. Current evidence does not support the use of antipsychotics to treat delirium symptoms [37, 38]. Families vary in their level of distress in witnessing delirium symptoms and need support during this time [35, 36]. It is important to ensure that discussions about prognosis are had, as delirium is often a predictor of death. Families also need an explanation about what delirium is (a medical condition due to multiple causes altering brain function, rather than a psychiatric condition), and acknowledgement that it causes distress to the patient and their family. Clinicians also need to recognise that being mentally aware is highly valued at the EOL, and should not assume that sedation is the treatment choice that would be chosen by all patients or their surrogate decision makers [35, 36]. Non-pharmacological approaches such as having familiar family in attendance, familiar objects in the room, maximising hearing and vision by ensuring the use of glasses and hearing aids, and minimising changes in the environment, such as room changes, can also minimise symptoms and distress for the dying patient and their family.

Anxiety

Anxiety is commonly experienced by two-thirds of patients with advanced respiratory disease [39]. It can be related to the disease itself or can emerge as a result of an underlying anxiety disorder, premorbid drug and alcohol issues, unrelieved pain, breathlessness or other symptoms [39]. Lower ego integrity, more physical problems and more psychological problems are predictive of higher levels of death anxiety in elderly people [40].

Although a range of pharmacological agents is routinely used to manage anxiety, there is little evidence for their effectiveness in patients during their last days and hours [41]. While addressing the underlying drivers of anxiety offers the best course of action, a low-dose anxiolytic may be required to manage escalating anxiety; however, its introduction needs to be balanced against its potential harm (i.e. increased drowsiness, reduced ability to communicate with family). Although benzodiazepines are commonly prescribed at the EOL, they can impair the patient’s memory and cause dizziness, drowsiness, increased falls and anterograde amnesia [42].

If the patient is alert enough, social work or pastoral care input may help alleviate anxiety related to psychological or spiritual distress. Providing the patient with an opportunity to have their questions answered and supporting the family to stand by the patient can also do much to minimise anxiety at the EOL.

Cough

Cough is a prevalent and distressing symptom that can persist up to the time of death. Advanced disease, an accumulation of secretions, asthenia, muscle weakness and/or the inability to coordinate swallowing all contribute to ineffective, persistent involuntary coughing at the EOL. A moist cough in a patient dying of COPD is best managed with anticholinergic medications [43]. Although there is no convincing evidence that any of the commonly used drugs (i.e. opioids or over-the-counter cough syrups) are effective for cough in COPD patients [44, 45], there is some evidence that dextromethorphan may be helpful [45]. While there is some evidence for the use of mucolytic agents for the management of cough for patients with COPD, the effectiveness of these drugs at the EOL has not been investigated [43]. There is also no evidence to support the use of nebulised lignocaine or other local anaesthetics, and even less evidence for non-pharmacological intervention that minimises the burden of cough at the EOL.

Management of refractory symptoms

There are occasions when a dying patient’s breathlessness, pain or delirium is not relieved by the optimal use of recommended palliative treatment regimes and the patient is experiencing significant distress as a result of this persistent symptom(s). In the context of refractory symptoms, palliative sedation may be indicated, but only after the patient has been thoroughly assessed by an interdisciplinary team (i.e. palliative physician, pain expert, psychosocial counsellor and pastoral care) and with the prior informed consent of the patient themselves. The interdisciplinary team needs to determine that all possible treatments have been optimised and that, based on their repeated and careful assessments, no other methods are available for alleviation of the refractory symptoms within the life expectancy time frame. There needs to be consensus within the team that the benefits of palliative sedation outweigh the risks of what the patient can tolerate [46]. There are also cases where acute distressing events (i.e. massive bleeding, grand mal seizures or acute airway obstruction) require the use of palliative sedation. In these situations, the monitored use of nonopioid drugs (i.e. benzodiazepines, barbiturates and propofol) at a dose and in a manner that are ethically acceptable to the patient, family and healthcare team may be indicated to relieve the burden of otherwise intractable suffering. The patient and family need to be aware that administering palliative sedation will induce unconsciousness, which is likely to be irreversible and is in the context of death being expected [45].

Achieving a good death

Across the developed world, dying patients and families have identified maintaining control, good symptom management, an opportunity for closure, affirmation of the dying person, recognition of and preparation for impending death, and not being a burden as necessary for a “good death” [47–49]. A recent systematic review similarly confirmed that 1) effective communication and shared decision making, 2) expert care, 3) respectful and compassionate care, and 4) trust and confidence in clinicians are the most important EOL care elements for dying in both patients and their families [50]. The fifth next most important element differs, with financial affairs being important to families, while an adequate environment for care and minimising the burden are both important to patients [50]. In addition to effective symptom management, the type of care that dying patients and their families desire is person-centred, holistic interdisciplinary palliative care (table 2). Importantly, care for the family after the person’s death is also critical, and health professionals have a role to provide support at the time of death, and also to refer them if necessary for ongoing bereavement support.

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