Palliative medicine and symptom control

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Chapter 10 Palliative medicine and symptom control

Introduction and general aspects

Palliative care is the active total care of patients who have advanced, progressive life-shortening disease. It is now recognized that palliative care should be based on needs not diagnosis: it is needed in many non-malignant diseases as well as in cancer (Box 10.1).

The goal of palliative care is to achieve the best possible quality of life for patients and their carers by managing not only physical symptoms, but also psychological, social and spiritual problems. When life-prolonging treatments are no longer improving or maintaining quality of life, death is accepted as a normal process. The aim is to enable the patient to be cared for and to die in the place of their choice, with excellent symptom control and an opportunity to say goodbye and bring closure.

Importance of early assessment

Early assessment of needs, with SPC referral if required, is crucial to obtaining the best outcome for rehabilitation and for maintaining or improving quality of life for both patient and carer. Palliative care is most effective when it is given as soon as possible after diagnosis and is given alongside disease-specific therapy, such as radio/chemotherapy for cancer or cardiac medication for heart failure. Early referral links palliative care with quality of life improvements; positive associations increase the likelihood that patients and families continue to use palliative care services when they need them. Furthermore, in malignant disease, there is good evidence that integrating palliative care and anti-tumour treatment soon after diagnosis reduces long-term distress and increases survival in selected cases.

If palliative care is seen only as relevant for the end-of-life phase, patients who have non-malignant disease are denied expert help for complex symptoms. Timely management of physical and psychosocial issues earlier in the course of disease prevents intractable problems later (Box 10.2).

Symptom control

This section outlines the medical aspects of symptom control. Good palliative care integrates these with appropriate non-pharmacological approaches, including anxiety management and rehabilitation (see p. 489).

Pain

Pain is a feared symptom in cancer and at least two-thirds of people with cancer suffer significant pain. Pain has a number of causes, and not all pains respond equally well to opioid analgesics (Fig. 10.1). The pain is either related directly to the tumour (e.g. pressure on a nerve) or indirectly, for example due to weight loss or pressure sores. It may result from a co-morbidity such as arthritis. Emotional and spiritual distress may be expressed as physical pain (termed ‘opioid irrelevant pain’) or will exacerbate physical pain.

The term ‘total pain’ encompasses a variety of influences that contribute to pain:

The WHO analgesic ladder

Most cancer pain can be managed with oral or commonly used transdermal preparations. The World Health Organization (WHO) cancer pain relief ladder guides the choice of analgesic according to pain severity (Fig. 10.2, Table 10.1).

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Figure 10.2 WHO analgesic ladder for cancer and other chronic pain. Step 2 can be omitted, going to morphine immediately. Adjuvant drugs are listed in Table 10.1. *Opioids include all drugs with an action similar to morphine, i.e. binding to endogenous opioid receptors. Continue NSAID/paracetamol regularly when opioid started.

Table 10.1 Commonly used adjuvant analgesics

Drugs Indication

NSAIDs, e.g. diclofenac

Bone pain, inflammatory pain

Anticonvulsants, e.g. gabapentin (600–2400 mg daily) or pregabalin (150 mg at start increasing up to 600 mg daily)

Neuropathic pain

Tricyclic antidepressants, e.g. amitriptyline (10–75 mg daily)

Neuropathic pain

Bisphosphonates, e.g. disodium pamidronate

Metastatic bone disease

Dexamethasone

Neuropathic pain, inflammatory pain (e.g. liver capsule pain), headache from cerebral oedema due to brain tumour

If regular use of optimum dosing (e.g. paracetamol 1 g × 4 daily for step 1) does not control the pain, then an analgesic from the next step of the ladder is prescribed. As pain is due to different physical aetiologies, an adjuvant analgesic may be needed in addition or instead, such as the tricyclic antidepressant amitriptyline for neuropathic pain (Table 10.1).

Strong opioid drugs

Dose titration and route

Morphine is the drug of choice and, in most circumstances, should be given regularly by mouth. The dose should be tailored to the individual’s needs by allowing ‘as required’ doses; morphine does not have a ‘ceiling’ effect. If a patient has needed further doses in addition to the regular daily dose, then the amount in the additional doses can be added to the following day’s regular dose until the daily requirement becomes stable; a process called ‘titration’. When the stable daily dose requirement has been established, the morphine can be changed to a sustained-release preparation. For example:

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The starting dose of morphine is usually 5–10 mg every 4 hours, depending on patient size, renal function and whether they are already taking a weak opioid.

If there is significant renal dysfunction, morphine should be used in low doses and should not be given in continuous dose regimens (e.g. by subcutaneous infusions) because of the risk of metabolite accumulation (it is renally excreted). In renal impairment, an alternative opioid (e.g. fentanyl) can be given transdermally, e.g. 72-hour self-adhesive patches.

If a patient is unable to take oral medication due to weakness, swallowing difficulties or nausea and vomiting, the opioid should be given parenterally. For cancer patients who are likely to need continuous analgesia, continuous subcutaneous infusion is the preferred route.

Both doctors and patients may have erroneous beliefs (e.g. fear of addiction), which mean that adequate doses of opioids are not prescribed or taken; however, addiction is very rare with the risk of iatrogenic addiction being <0.01%.

Gastrointestinal symptoms

Anorexia, weight loss, malaise and weakness

These result from the cancer-cachexia syndrome of advanced disease and carry a poor prognosis. Although attention to nutrition is necessary, the syndrome is mediated through chronic stimulation of the acute phase response, and tumour-secreted substances (e.g. lipid mobilizing factor and proteolysis inducing factor). Thus, calorie-protein support alone gives limited benefit: parenteral feeding has been shown to make no difference to patient survival or quality of life.

There is a small and evolving evidence base for specific therapies such as eicosapentaenoic acid (EPA) fish oil, cyclo-oxygenase (COX) inhibition with an NSAID and antioxidant treatment, but currently, unless the patient is fit enough for, and responds to, anti-tumour therapy, management is supportive. Some patients benefit from a trial of a food supplement that contains EPA and antioxidants. Megestrol may help appetite, but weight gain is usually fluid or fat. It is also thrombogenic and is of little benefit.

Until recently, corticosteroids were recommended and they are still commonly used as an appetite stimulant; however, the weight gained is usually fluid and muscle catabolism is accelerated. Also, any benefit in appetite stimulation tends to be short-lived. Thus, their use should be limited to short term only.

Respiratory symptoms

Breathlessness

Breathlessness remains one of the most distressing and common symptoms in palliative care; causing the patient serious discomfort, it is highly distressing for carers to witness. Full assessment and active treatment of all reversible conditions, such as drainage of pleural effusions, or optimization of treatment of heart failure or chronic pulmonary disease is mandatory. In advanced cancer, breathlessness is often multifactorial in origin and many of the contributory factors are irreversible (e.g. cachexia), so a ‘complex intervention’ combining a number of different treatment strategies has the greatest impact. Aspects of breathlessness management are summarized in Box 10.3.

Breathlessness with panic and anxiety

Patients often experience a panic–breathlessness cycle and fear dying during an acute episode of breathlessness. This is extremely unlikely in chronic disease, unless there is an acute complication, and reassurance will help. The perception of breathlessness is mediated by the central nervous system and can be modulated by thoughts and feelings about the sensation. Education about breathlessness and exploration of psychological precipitators or maintainers can reduce its impact.

Non-pharmacological approaches such as using a hand-held fan, pacing, prioritizing activities to avoid over-exertion, breathing training and anxiety management are helpful (Table 10.2). There is no evidence to suggest that oxygen therapy reduces the sensation of breathlessness in advanced disease and the hand-held fan should be used before oxygen for this purpose. Opioids, used orally or parenterally, can palliate breathlessness. If panic/anxiety is significant, a quick-acting benzodiazepine such as lorazepam (used sublingually for rapid absorption) may be useful.

Table 10.2 Key non-pharmacological interventions for breathlessness

Intervention Putative mechanism of action Most useful

Hand-held fan

Cooling area served by 2nd and 3rd branches of trigeminal nerve

Reducing length of episodes of SOB on exertion or at rest

Reduces temperature of air flowing over nasal receptors, altering signal to brainstem respiratory complex and so changing respiratory pattern

Gives patient and carer confidence to have an intervention they can use

Exercise

Stops spiral of disability developing

Patients who are still quite mobile.

Changes muscle structure: less lactic acid produced

In patients who have not developed onset of SOB, reduce/defer symptoms by reducing deconditioning

Anxiety reduction, e.g. CBT (needs skilled clinician to administer) or simple relaxation therapy

Works on central perception of breathlessness reducing impact

People with higher levels of anxiety at baseline (i.e. when first seen)

Interrupting panic/anxiety cycle

Patients willing to persevere with learning a new skill

Carer support

Reduces carer anxiety and distress which is part of ‘total’ anxiety–panic cycle

Where carer is isolated, under extra pressures (e.g. looking after elderly parent, going through divorce)

Breathing retraining

Improve mechanical effectiveness respiratory system

Chronic advanced respiratory disease and those with anxiety-related breathlessness

Pacing (finding a balance between activity and rest to achieve aims) and prioritizing (deciding which daily activities are most necessary and focusing energy use on them)

Avoids over-exertion which can lead to exhaustion, inactivity and subsequent deconditioning

Patients who are able and willing to modify daily routines

Neuromuscular electrical stimulation

Increases muscle bulk, simulating effect of exercise

Patients who live alone

Those unable to get out to attend rehabilitation group

People with a short prognosis

People with co-morbidities that prevent exercise

CBT, cognitive behavioural therapy; SOB, short of breath (breathlessness).

Other physical symptoms

People with cancer may develop other physical symptoms caused directly by the tumour (e.g. hemiplegia due to brain secondaries) or indirectly (e.g. bleeding or venous thromboembolism due to disturbances in coagulation). Symptoms may also result from treatment, such as lymphoedema following treatment for breast or vulval cancer, or heart failure secondary to anthracycline or trastuzumab therapy. The principles of holistic assessment, reversal of reversible factors and appropriate involvement of the multiprofessional team should be applied.

Loss of function, disability and rehabilitation

Some of the most pressing concerns include increasing physical frailty, loss of independence, and perceived burden on others. Evidence suggests that functional problems are not routinely assessed, and not as well managed as pain and other symptoms. Rehabilitation can:

A referral to physiotherapy or occupational therapy is helpful for patients whose ability to carry out daily activities is compromised by illness or its treatment. However, remember that effective rehabilitation is a team effort and is not solely the domain of nursing and allied health professionals. Doctors also have a major role to play in attending to functional problems and fatigue; they should not see these as inevitable, unavoidable and insoluble.

There is a need to take into account changing performance status as well as changes in goals and priorities. It can be helpful to identify short-term, achievable goals and focus on these. Most patients wish to remain at home for as long as possible, and to die at home, given adequate support. Patients’ community rehabilitation needs should not be neglected.

Extending palliative care to people with non-malignant disease

The principles of palliative care can be applied throughout medical practice so that all patients, irrespective of care setting (home, hospital or hospice) receive appropriate care from the staff looking after them and have access to SPC services for complex issues. Some principles are outlined in Box 10.4. Patients who have chronic non-malignant disease such as organ failures (heart, lung and kidney), degenerative neurological disease and HIV infection:

There may be a less clear end-stage of disease, but the principles of symptom control are the same: holistic assessment, reversal of reversible factors and multiprofessional support.

Patients who have non-malignant disease may have very close relationships with their usual team, and an integrated approach is essential to allow optimization of disease-directed medication as well as palliation. People with non-malignant disease may live for years with a difficult illness and so their palliative care needs to differ in some respects from those of cancer patients (Table 10.3). However, symptom management is largely transferable, with some exceptions and extra complexities as outlined below.

Table 10.3 Differences between palliative care for people with malignant and non-malignant diseases

Cancer Non-malignant disease

Standard treatment regimens even in advanced disease

Advanced disease often needs bespoke pharmacological interventions, which may interact with palliative drugs. Close teamwork is essential to avoid adversely affecting outcomes, e.g. in use of opioids and many other drugs

Relatively new diagnosis (weeks to months)

Usually many years of illness with loss of social networks, employment and practical support

Sudden death is rare (although it can happen, e.g. pulmonary embolus, neutropenic sepsis)

Sudden death is relatively frequent as a result of cardiovascular/diabetic complications (e.g. in chronic kidney disease)

Cancer and associated problems are the main morbidities

Co-morbidities due to disease or treatment often cause most problems and shape end-of-life care

Prognosis is usually predictable

Prognosis difficult to determine: many ‘near death experiences’, admissions and recoveries occur

Support from SPC services is often started early in the disease course

Main support may be from a medical unit, e.g. dialysis unit

Standard hospice services (e.g. day therapy) often suit treatment patterns well

Standard hospice service may not be offered (clinician ignorance) or may not be feasible (e.g. for dialysis patient attending hospital 3 days a week)

Throughout the course of the illness, careful open discussion of possible future options is essential. Early discussion of difficult choices is as helpful for patients who have non-malignant disease as it is for those with cancer and these discussions are ideally held when the patient is relatively well and outside an acute episode. Discussions delayed until the crisis of acute admission may lead to acceptance of an invasive treatment that is later regretted by the patient.

Chronic respiratory disease

Chronic obstructive pulmonary disease (COPD)

COPD is the most common chronic respiratory disease. Patients may live increasingly restricted lives for years, rather than the months or weeks that are common once someone with cancer becomes breathless. Patients usually reach late middle age or old age before becoming very disabled, and an elderly spouse often has to carry significant physical burdens.

Because of the risk of dependency, falls and memory problems, non-pharmacological approaches to anxiety are more appropriate than benzodiazepines (Table 10.2). Short-acting benzodiazepines should be reserved for severe panic episodes.

Palliative care breathlessness services can be very helpful for those unable to comply with pulmonary rehabilitation. Emergency admissions to hospital for non-medical reasons are often due to anxiety and the support offered by community palliative care services working with respiratory teams can help prevent these.

Renal disease

All care for patients who have end-stage chronic kidney disease (CKD) is directed toward maintenance or improvement of renal function. Prescribing is complicated, particularly if patients are receiving dialysis. Care must be taken not to inadvertently cause renal damage with potentially reno-toxic medication, and close liaison with the renal team is mandatory.

In patients who have CKD, co-morbidities such as cardiovascular disease, diabetes or osteoporosis may cause greater problems than the renal disease. Those with a fluctuant course of symptoms, such as the 25–33% who have co-existing cardiac disease, bear disproportionately greater physical and psychological burdens.

Neurological disease

People who suffer from chronic degenerative neurological diseases have considerable burden of palliative care needs including:

Ideally, discussions regarding the patient’s wishes should take place in advance, if the patient is able to do this, so that these can be supported.

Care of the dying

Most people express a wish to die in their own homes, provided their symptoms are controlled and their carers are supported. However, patients die in any setting and so all healthcare professionals should be proficient in end-of-life care.

Reports of inadequate hospital care have led to the development of integrated pathways of care for the dying. Pathways act as prompts of care, including psychological, social, spiritual and carer concerns in those who are diagnosed as dying. The latter is a decision reached by a multiprofessional team through careful assessment of the patient and exclusion of reversible causes of deterioration.

An end-of-life tool: the Liverpool Care Pathway

The Liverpool Care Pathway (LCP) is a four-stage end-of-life tool designed to transfer the standard of hospice care of the dying into the hospital (Box 10.5). Now adapted for any setting, it is the most commonly used pathway for care of the dying in the UK and in several other countries. There have been no trials comparing effectiveness of any end-of-life care pathways against usual care without a pathway, but serial UK national hospital audits have been able to assess and monitor the level of care documented against the standards set in the LCP.

The LCP has provision for departures from the ‘prompts of care’, e.g. discontinuation of intravenous antibiotics or parenteral fluids, if a clinical need can be demonstrated. The patient is reviewed regularly (at least daily). Occasionally, the patient improves whilst on the pathway and can be returned to usual care if this is deemed more appropriate by the clinical team. For those who do not improve, the LCP prompts advanced prescription of medication to ease the symptoms most likely to arise in the dying phase (pain, breathlessness, nausea, agitation and excess respiratory secretions) to allow timely action.

Engagement with family and carers is vital, and it should not be assumed that they will recognize or understand signs of imminent death. The LCP has supportive information leaflets that carers should find useful.