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).
Key components of a modern palliative care service
Management should be based on needs not diagnosis: the symptom burden of non-malignant disease often equals that of cancer
Care should be independent of the patients’ location and should help patients to remain at home if possible, avoiding unwanted admissions to hospital
Rehabilitation for people with advanced disease
Bereavement care for people with pathological grief problems
Telephone advice for other clinicians; disseminating palliative care knowledge
Teaching for clinicians, from undergraduate level to postgraduate life-long learning
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.
Who provides palliative care?
A hallmark of palliative care is the multiprofessional team, as single professionals cannot provide the breadth of necessary expertise, and the emotional demands of working in this area require team support to enable balanced, compassionate but dispassionate care.
All healthcare providers should have basic palliative care skills and access to a specialist palliative care (SPC) team. They should be aware of the services that the local SPC teams can offer and recognize when referral is appropriate. A problem-based approach to disease management will ensure that patients and carers obtain access to appropriate support services, including SPC and will avoid an either/or approach (‘either curative treatment or palliative care’).
Good communication between members of the healthcare team, and the patient and carer underpins the successful management of advanced disease and end-of-life care. Good liaison between the hospital, primary care and hospice is also essential.
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).
Problems arising when specialist palliative care (SPC) is delayed until the end-of-life
There is insufficient time to achieve good symptom control by combining non-pharmacological and pharmacological components
SPC services are deemed less acceptable by patient and family, being associated with ‘dying’ or ‘giving up’ or ‘giving in’ to illness
Psychological distress and physical symptoms become intractable and contribute to complex grief
It becomes too late to adopt rehabilitative approach or teach/use non-pharmacological interventions that need a degree of training and patient motivation (e.g. cognitive behavioural approaches, mindfulness meditation, attendance at day therapy)
Assessment of patient’s needs and understanding
The causes of a patient’s symptoms are often multifactorial, and a holistic assessment is central to optimum management. Assessment of the patient’s understanding of the disease, understanding their future wishes and acknowledging their concerns, will help the team plan and implement effective support. Patients will have differing needs for information, and will deal with ‘bad news’ in different ways. A sensitive approach, respecting individual requirements, is crucial.
Recent changes in provision of palliative care
An increase in the number of patients who survive malignant disease and a recognition of the needs of patients who have non-malignant disease have led to changes in the provision of SPC services. Many patients will use SPC services for a limited period (weeks to months) whilst complex problems are addressed, and then are discharged with the opportunity for re-referral if help is required later.
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 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:
Biological: the cancer itself, cancer therapy (drugs, surgery, radiotherapy)
Social: family distress, loss of independence, financial problems from job loss
Psychological: fear of dying, pain, or being in hospital; anger at dying or at the process of diagnosis and delays; depression from all of above
Spiritual: fear of death, questions about life’s meaning, guilt.
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).
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.
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)
Tricyclic antidepressants, e.g. amitriptyline (10–75 mg daily)
Bisphosphonates, e.g. disodium pamidronate
Metastatic bone disease
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:
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%.
The most common side-effects are:
Nausea and vomiting: this can usually be managed or prevented with antiemetics (such as metoclopramide). Some antiemetics can be combined with an opioid, e.g. haloperidol or metoclopramide; always check compatibility data.
Constipation is common and should be anticipated with administration of a combination of stool softener (e.g. macrogols) and stimulants either separately or in one preparation Methyl naltrexone is a peripherally acting opioid receptor antagonist which is used if response to other laxatives is poor.
If side-effects are intractable, a change of opioid is often helpful.
Confusion, persistent and undue drowsiness, myoclonus, nightmares and hallucinations indicate opioid toxicity. This may follow rapid dose escalation and responds to dose reduction and slower re-titration. It may indicate poorly opioid responsive pain and the need for adjuvant analgesics.
Antipsychotics such as haloperidol may help settle the patient’s distress whilst waiting for resolution of toxicity. Some patients will tolerate an alternative opioid better, e.g. oxycodone, or, an alternative route, e.g. subcutaneous injection.
The most commonly used adjuvant analgesics are described in Table 10.1. Other treatments such as radio/chemotherapy, anaesthetic or neurosurgical interventions, acupuncture and TENS may be useful in selected patients.
Regular review is necessary to achieve optimal pain control, including regular assessment to distinguish pain severity from pain distress.
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.
Nausea and vomiting
Nausea and vomiting is common, and often due to use of opioids without antiemetics such as haloperidol 1.5 mg × 1–2 daily or metoclopramide 10–20 mg × 3 daily. When nausea and vomiting are associated with chemotherapy, patients should have an antiemetic, starting with metoclopramide or domperidone, but if the risk of nausea and vomiting is high, give a specific 5HT3 antagonist, e.g. ondansetron 8 mg orally or by slow i.v. injection.
For most chemical causes, e.g. hypercalcaemia, haloperidol 1.5–3 mg daily is the first choice. Metoclopramide is also a prokinetic and therefore useful for emesis due to gastric stasis or constipation. Cyclizine 50 mg × 3 daily is also used.
For any cause of vomiting, it may be necessary to start antiemetic therapy parenterally by continuous subcutaneous infusion to gain control. If the patient has gastrointestinal obstruction, this route may need to be continued.