European Certificate In Essential Palliative Care PDF

European Certificate in Essential Palliative Care Chapter Five Management of non physical symptoms 101 pah.org.uk Management of other common (non physical) symptoms Chapter 4 focussed on common physical symptoms. People experience their illness in different ways and an holistic assessment i...

European Certificate in Essential Palliative Care Chapter Five Management of non physical symptoms 101 pah.org.uk Management of other common (non physical) symptoms Chapter 4 focussed on common physical symptoms. People experience their illness in different ways and an holistic assessment is essential if both physical and non-physical components are to be addressed. As patients experience their symptoms as individuals the division between physical and non-physical is somewhat arbitrary. In this chapter we will be looking at the management of the following symptoms which greatly affect the quality of life of many patients. The symptoms that will be discussed are: fatigue anxiety, depression and apathy delirium and agitation spiritual pain sexual issues and intimacy Fatigue Fatigue is a debilitating symptom, which can be: associated with a general deterioration in a person’s condition treatment related (e.g. chemotherapy or radiotherapy) associated with low mood disease related It is important to establish that tiredness and fatigue are not the same. Tiredness is usually relieved by sleep whereas the overwhelming feeling of fatigue is not. Assessment Establish the person’s perception of his/her fatigue - questions to ask: “What is the impact on your daily life”? “Is there anything that makes your fatigue worse”? “What helps relieve your fatigue”? “On a scale of 1-10, with 10 being the most ever, how would you rate your fatigue at the moment”? Contributing factors Anxiety, depression, apathy Sleep disturbance – insomnia or hypersomnia Pain Fluid or electrolyte imbalance Anaemia Poor oral intake Cachexia Cardiac or respiratory disease Renal or hepatic disease Hypothyroidism pah.org.uk 102  Management MPT approach - early involvement of physical and occupational therapy and psychological support Encourage patient to maintain a fatigue diary – what precipitates / relieves fatigue Encourage energy conservation Optimise nutrition and hydration Prioritise most important / desirable activities Daytime naps and good sleep hygiene Plan activity for when person most energised Encourage exercise appropriate to the person and severity of fatigue Relaxation and stress management techniques Pacing and rest Points to remember A person with fatigue may feel guilt that they are not able to complete simple activities and are unable to support others close to them which can have a further negative impact on their sense of self-worth. Anxiety Many patients with a life limiting illness will feel some degree of anxiety. This anxiety may be related to a number of concerns e.g. fear of death, leaving loved ones, fear that symptoms will not be controlled and fear about loss of independence. Anxiety may be a feeling associated with a perceived or actual threat. Anxiety can at times appear irrational but can be very real to the person experiencing it. Anxiety may be a very normal and appropriate response to a challenging situation. However if the anxious response persists it can become chronic and self-perpetuating. Generalised anxiety occurs when there is no specific focus to the anxious feelings which can be very debilitating. Presenting features of anxiety Physical Cognitive Difficulty sleeping Difficulty concentrating Tremors Emotional Nausea and vomiting Feeling panicked Dry mouth Emotional lability Feeling clammy Frightened Fluttering stomach Angry Palpitations Feeling low Hyperventilation/ panic Irritability Pins and needles Emotional Breathlessness Behavioural Anorexia Overuse of alcohol, cigarette or drugs, Headaches Outbursts of anger and irritability Restlessness Changes in sexual behaviour Difficulty working 103 pah.org.uk  Assessment of anxiety The patient should be assessed for predisposing factors such as pain, unfounded worries or medications that can cause anxiety. Questions to address when exploring someone’s level of anxiety include: When did it start? What helps relieve it? How does the anxiety impact on everyday life? Is it related to starting on or withdrawing specific medications? Is it constant, intermittent, situation dependent? Is it compounded by anxiety within the person’s family? Is it due to alcohol / nicotine / drug withdrawal? Are there compounding social factors? Points to remember Establish what the person was like before - have they previously experienced anxiety, or do they have any previous psychiatric history? The Hospital Anxiety and Depression Scale, HADS (Parkinson’s UK, 2022) or GAD 7 (Generalised Anxiety Disorder Assessment, no date) tool is widely used and can complement the response ascertained from the above questions. Management of anxiety For some, open, honest discussions with people that they trust will be sufficient to resolve their anxiety. The most effective treatment will depend on the severity of the anxiety, but also on personal preference. NICE recommends a stepped approach with increasing levels of intervention. NICE (NICE,2020). Relaxation techniques can address both the cognitive and physical impact of anxiety. Guided imagery and visualisation techniques Using their imagination, the patient is encouraged to visualise a story, for example, walking along a peaceful beach or exploring a beautiful garden. Alongside breathing techniques this can help the person focus their mind away from anxious, worrying thoughts and feelings and focus on more helpful ones. Progressive muscular techniques This technique involves the patient tensing and relaxing different muscle groups. Usually starting at the extremities, the person is encouraged to focus on the different parts of their body. This re-focussing may help the person to relax. Pharmacological management Benzodiazepines These can occasionally be useful in helping break the cycle of anxiety, and in so doing restore sleep and help the person feel that they are more “in control”. pah.org.uk 104  Warning ! Benzodiazepines can be effective in the short term management of acute anxiety states, but longer term their addiction potential and lack of benefit make them a false friend. They should not be seen as a substitute for taking time to talk with the person and help them to express how they are feeling about the situation. Diazepam 1 - 5mg prn orally usually at night. Diazepam works as a mixed sedative / anxiolytic. It should be remembered that it has a long half life and may therefore accumulate and have a sedating effect. Lorazepam 0.5 - 1mg prn orally or sub lingual. Shorter acting anxiolytic. More addictive than diazepam. Midazolam 2.5 - 5mg prn sub cut or buccal. Useful for emergency sedation in extreme panic / anxiety. Antidepressants Tricyclic antidepressant such as amitriptyline are recommended in generalised anxiety disorders. Amitriptyline 10 - 50mg Doses usually start lower than those for depression, and the patient may benefit from the sedative effect. While amitriptyline takes up to six weeks to produce effects for depression, when treating anxiety its impact can be seen earlier. Very occasionally on commencing, anxiety levels may escalate. Warning ! Tricyclic antidepressants should not be used on patients who have had a recent myocardial infraction, cardiac arrhythmias or heart block. Selective serotonin reuptake inhibitors (SSRIs) are less addictive and have fewer anti muscarinic effects, lower cardiotoxicity and faster onset of action. Citalopram 20 - 40mg once daily Paroxetine 20 - 40mg once daily Sertraline 50 - 100mg once daily It has been observed in patients below the age of 30 that suicide risk is slightly increased following initiation of an SSRI. Points to remember Complex anxiety states with depression may require specialist psychiatric referral and intervention. 105 pah.org.uk Depression Depression (with or without anxiety) is a common problem in palliative care and acknowledged to be underreported. It is estimated that as many as 25% of the advanced cancer population will develop a significant mood disorder. As with anxiety, depression can be at any point on a spectrum, ranging from sadness to an acute depressive illness. (Asghar-Ali et al. (2013). Assessment of depression Physical symptoms such as weight loss, sleep disturbances and lethargy are often seen in people with depression, but can also be common in people with a terminal illness. Therefore, greater emphasis on assessment should be placed on psychological symptoms such as overriding anxiety, inability to concentrate or loss of interest in daily activities. All clinical assessments should routinely ask about mood, feelings of worthlessness, hopelessness, guilt and suicidal ideation, which are key symptoms. Risk factors History of depression Lack of social support Isolation and loneliness Chronic pain Poor performance status Advanced disease at diagnosis Associated with underlying illness e.g. dementia, Parkinson’s disease The Hospital Anxiety and Depression Scale, (Parkinson’s UK, 2022) and the Brief Edinburgh Depression Scale (BEDS) are useful screening tools for assessing patients suspected of having depression. Management of depression Once reversible factors have been addressed, the main tenets of the management of depression are closely aligned with those of good palliative care e.g. emotional and social support, and the opportunity to express and explore concerns. This is best supported by a multi-disciplinary approach. The non-pharmacological interventions identified in the treatment of anxiety may all be effective in the management of depression (see above) and it must be remembered that interventions may need to be relatively brief in those in the terminal stages of their illness. For some however, medication will be required. Pharmacological management of depression The drug selected will be dependent on: patient profile underlying disease patient preference symptom profile pah.org.uk 106  Management with selective serotonin reuptake inhibitors (SSRIs) Ist line treatment Sertraline 50mg once daily Citalopram 20mg once daily Both are well tolerated and should be titrated upwards. 2nd line treatment Paroxetine 20mg in the morning Fluoxetine 20mg in the morning Fluoxetine should be used with caution as it can cause restlessness and anxiety. Warning ! Patients taking SSRIs are at an increased risk of developing GI bleeds so be mindful of this risk if using alongside other medications such as NSAIDs which cause gastric irritation. An uncommon but potentially life-threatening side effect of SSRIs is the serotonin syndrome (SS). It can result from therapeutic doses of SSRIs and other drugs, drug interactions or intentional self-harm. Tricyclic antidepressants may take up to 6 weeks to take effect. They all have antimuscarinic properties and therefore may be associated with hypotension, dry mouth, confusion and difficulties with micturition. Points to remember Tricyclic antidepressants are more sedating than their counterparts which may be useful in some patients. A person with depression will express feelings of sadness and hopelessness, whereas a person with apathy is more likely to express a feeling of “losing their sparkle”. Apathy Apathy is often associated with anxiety and depression. It is best described as when someone persistently has a lack of interest or loss of motivation. Possible causes of apathy: loss of confidence social isolation withdrawal underlying conditions – stroke, Parkinson’s, Huntington’s disease, progressive supranuclear palsy damage to the frontal lobe of the brain dementia 107 pah.org.uk  Management of apathy Whilst some patients will find some benefit from antidepressants, some, particularly those with dementia, find that they can make the symptoms worse. One of the main treatments advocated is cognitive stimulation therapy. This technique is increasingly being used with people with dementia, and it involves playing specific games or using pictures to recognise objects or facial expressions. This therapy takes place in a group setting and usually lasts 45 minutes. Other things that may help include: a daily routine encouraging the person to change into day clothes concentrate on the things the person enjoys, focus on the positives encourage and stay positive break down activities into chunks so they don’t seem too overwhelming Points to remember Newly diagnosed patients with dementia who start on acetylcholinesterase inhibitor medication usually see an improvement in their motivation. (Alzheimer’s Society, 2019) Delirium and confusional states “Delirium (sometimes called ‘acute confusional state’) is a common clinical syndrome characterised by disturbed consciousness, cognitive function or perception, which has an acute onset and fluctuating course. It usually develops over 1–2 days. It is a serious condition that is associated with poor outcomes. However, it can be prevented and treated if dealt with urgently”. NICE (NICE 2010). The sudden onset of delirium can be acutely distressing. It is estimated that it can affect as many as 88% of hospitalised patients in the terminal stages of their illness. It is exacerbated by: old age moving from familiar surroundings e.g. hospice / hospital admission deafness poor vision Hosker and Bennett (2016) Warning ! Whilst delirium is normally understood to be reversible, there may not be time to reverse the process in those at the end stage of their lives. pah.org.uk 108  Causes of delirium Some of the potentially reversible cause of delirium are drugs and drug interactions e.g. cimetidine, steroids, opioids, benzodiazepines, digoxin, lithium cancer - cerebral metastases biochemical causes such as hypercalcaemia, hypo / hypernatraemia or hypo / hyperglycaemia drug or alcohol withdrawal constipation or urinary retention infection pain breathlessness and / or hypoxia Points to remember In delirium, the rapidity of onset of altered consciousness is a key diagnostic factor. Management and care of the person with delirium Treat the underlying cause where possible Ensure safety of patient and others Consider mini mental state examination (MMSE) or equivalent Communications Clear and open explanation and discussion with patient and relatives is vital. Patients often cover up feelings of being muddled and are often relieved at having the opportunity to discuss how they are feeling. Patients (and their families) should be reassured that delirium can be reversible and that the person is not “going mad” and that aggressive behaviour is usually out of character. Pharmacological interventions Pharmacological interventions should be instigated following communications with the patient and their family. Haloperidol 0.5mg orally 1-2 hourly prn, daily maximum dose of 5mg especially in the elderly. For patients unable to take oral medication similar doses can be given subcutaneously 2 hourly (PANG Guidelines, Watson 2016). Antipsychotic medications e.g. risperidone, olanzapine or quetiapine may be useful. They have the benefit that they cause fewer extrapyramidal side effects than haloperidol. Warning ! Try to avoid these medications if the patient has a history of, or risk factors for cerebrovascular thrombosis, unless the patient is more at risk from not using medication to manage damaging behaviour. If anxiety associated with the delirium is the overriding symptom: Diazepam 2 - 5mg TDS PO or PR Midazolam 2.5 - 5mg SC or buccal 109 pah.org.uk Benzodiazepines can be used sparingly in conjunction with anti-psychotics. Alternatively, an atypical antipsychotic such as quetiapine 12.5 - 25 mg stat plus prn could be considered. If there is an agitated depression: Amitriptyline 25mg nocte to start Management of restlessness / delirium in the terminal phase Midazolam 5 - 100mg / 24 hours CSCI Levomepromazine 5 - 150mg / 24h CSCI See PANG guidelines for further detail It is important to differentiate between delirium, which is usually reversible, and dementia which is not. Differences between delirium and dementia Delirium Dementia Acute onset Slow, gradual onset Identifiable time of onset Time of onset not clear, typically note changes over months Cause is usually treatable such as an infection, Due to chronic disorder such as Alzheimer’s medication, pain, constipation and MI disease - progressive process Attention impaired Attention not impaired until late stages Consciousness ranges from lethargic to hyper No effect on consciousness until late stages alert Effect on memory varies Loss of memory especially for recent events Medical attention required immediately Medical attention required less urgently Non-pharmacological Interventions E nsure the patient has their glasses, hearing aids and dentures where appropriate to aid communication Have a clock visible and remind the patient of their surroundings to help orientate them Maintain a calm environment and quietness especially at night to aide sleep Having someone the patient is familiar with remain with them can help Remind/help the patient to eat and drink if they are distracted and forget to do so. Family Focus Delirium particularly at the end of life can be very difficult for those close to the patient to witness. Family members can be included in the patient’s care by being encouraged to do such things as talk to the patient in short, simple sentences, bring in a few familiar objects from home or play soothing music that the patient will like. pah.org.uk 110  Spiritual pain and distress As a person approaches the end of their life, they will often question who they are and what is happening to them. Spirituality, not to be confused with religion, is a person’s perception of what and whom is important to them, and how they make sense of the world. For some, but not all, this may be inextricably linked to their faith and the religion that they follow. Spiritual pain is increasingly seen as a distinct symptom and no longer purely the remit of faith leaders and specialists spiritual care leads rather spirituality is an area of a person’s care that anyone can help with. It is everyone’s business. Thoughts to reflect on… Spiritual pain can lead to spiritual growth - helping the person to focus on the things that are important to them. Assessment There are a number of spiritual assessment tools available. Spiritual assessment continues to be an area that many healthcare professionals do not feel confident exploring with a person. Listen to patients in a non-judgemental way – they may value different things to you or have different belief systems. Spiritual assessment is important to holistic care and should therefore not be avoided. Whilst there are some specific assessment tools, assessing spiritual distress and need should ideally be integrated with a holistic assessment. A helpful question can be: “What do I need to know about you so that I can give you the best possible care?” The FICA model takes this a stage forward and offers a useful acronym to help explore religious and spiritual history. “FICA” Model for religious / spiritual history taking F – Faith, belief, meaning What is your faith, belief, meaning? Do you consider yourself spiritual or religious? What things do you believe in that give meaning to your life? I – Importance and influence Is it important in your life? What influences does it have on how you take care of yourself? How have your beliefs influenced your behaviour during this illness? C – Community Are you part of a spiritual or religious community? Is this of support to you and how? Is there a person or group of people you really love or who are really important to you? A – Address / action in care How would you like me, your healthcare provider, to address these issues in your healthcare? Fitchett ,G in Cobb et al 2012 Management Acknowledging that there is spiritual pain is often the most important aspect of care Offer the person the opportunity to explore what they are feeling - they may self select or may request referral to chaplaincy or similar services 111 pah.org.uk Meeting the needs of people with a specific religion Warning ! Never assume that because a person is from a specific community or identifies with a particular religion that they will follow a specific set of practices. Listed within the reference list are a number of resources focusing on the needs of people from different religions. General points to remember Specific needs at the end of life should be explored in advance so that they can be met appropriately, sensitively and in a timely manner Clarify what those needs are with each individual – never assume that they are the same for all people of the same religion or community Clarify what is permissible – e.g. lit candles would not be appropriate next to oxygen cylinders or in inpatient units, so acceptable alternatives would need to be found Although assessment is important – never underestimate the power of your presence and simply being alongside someone you are caring for. Sexual issues and intimacy Sexuality and intimacy are central to humanity, but they are however areas of care that healthcare professionals find difficult to explore and address. This is sometimes due to a lack of confidence, but may also be due to a sense that these needs are less significant than the complex physical symptoms that an individual may experience. Sexual function at the end of life may be impacted by: psychosocial issues - altered body image, anxiety, depression, fatigue, lack of communication with spouse / partner physical issues - fatigue, nausea, altered sexual function pain - this may be a barrier for the patient but also for the partner who does not want to cause the person pain drugs e.g. hormone treatment for cancers of the breast or prostate an illness might change how close a couple can be, and some might put the intimate side and sexual needs to one side, or stop being physically close during the illness. The following can facilitate intimacy and expression of sexuality at home or on the in patient unit. Ensure privacy – putting a “do not disturb” sign on the door or requesting no visitors for a period of time Consider pushing two beds together Give permission to lie together on a bed Timing of medications to maximise symptom relief e.g. analgesia, inhalers Use of bronchodilators for patients who are short of breath Use of pillows, practice positioning before sexual activity and experiment with different sexual positions that minimize weight bearing or tiring movement Innovative ways to overcome issues such as incontinence or indwelling catheters pah.org.uk 112  Conclusion This chapter has highlighted the significance of non physical symptoms and the equally devastating effect that they can have on a person approaching the end of their lives and their families. It is essential to pay attention to the non physical elements in order to ensure a holistic approach to care. Thoughts to reflect on… Considering the complexities and challenges of managing non physical symptoms in clinical practice, that; assessment tools are available? what support services are available? 113 pah.org.uk