Chapter 5: Palliative Care for Neurological, Renal and Liver Diseases
Learning objectives for this chapter
By the end of this chapter, we would like you:
-To list the types of neurological, renal and liver diseases for which a person may be admitted to palliative care.
-To describe the pathophysiology of neurological, renal and liver diseases, and the signs and symptoms of these conditions (including those which predict a patient's impending death).
-To use nursing strategies to effectively manage the symptoms of end-stage neurological, renal and liver diseases in the palliative care context.
Palliative care for neurological disease
In the UK, the most common neurological diseases in palliative care are the dementias, major stroke, catastrophic traumatic brain injuries and progressive neurological conditions. As many neurological diseases are slowly progressive, a patient may experience a distressing loss of physical and cognitive function, and require support for an extended period.
Symptoms vary depending on the condition, although pain is common to all neurological conditions. Many patients will experience dyspnoea and / or dysphagia. They may also experience other symptoms -including constipation, mobility problems, fatigue and insomnia, restlessness / agitation, issues with speech / communication and mobility, cognitive changes, and depression / anxiety.
Management of neurological disease in the palliative care setting
Key goals for the management of neurological disease in the palliative care setting:
- To achieve effective management of the patient's symptoms.
- To minimise problems which may develop from the disease.
- To maximise the ability of the patient to live a fulfilling life.
The management strategies used vary, and may involve the management of the patient's:
- Pain: this can be managed using both pharmacological and non-pharmacological interventions.
- Dyspnoea: The principles of managing dyspnoea discussed in this module also apply to patients with neurological conditions.
- Dysphagia: generally requires the involvement of an allied health professional, such as an occupational therapist or speech pathologist. Management may require aids, dietary changes, and interventions to manage excessive salivation.
- Constipation: managing constipation generally involves increasing intake of fluids and fibrous foods, encouraging mobility, reducing medications which may impair gastric motility (where possible), and use of oral aperients.
- Mobility problems: management of mobility problems usually centres on medications to reverse motor symptoms associated with the condition. Exercise is also important. This may require the involvement of an allied health professional, such as an occupational therapist or a physiotherapist.
- Infection: most commonly pneumonia and septicaemia arising from the urinary tract. Prevention is key. Treatment usually focuses on the use of antibiotics.
Patients with a progressive neurological condition are at particular risk of psychological comorbidity - most notably, depression and anxiety. Many receive palliative care for an extended period of time; this may result in considerable distress for some patients (and also their family members, carers and significant others). Management of psychological comorbidity is important.
There are a number of key clinical signs which indicate the end-of-life for a person with a neurological condition;
- Significant swallowing problems, often with aspiration pneumonia.
- Recurrent infection despite aggressive antibiotic therapy.
- Marked decline in physical status.
- New or advancing cognitive difficulties.
- Weight loss.
Nurses must identify these signs and be proactive in preparing the patient and their significant others - both physically and psychologically - for the immediate end-of-life period.
Nurses may occasionally care for patients who have experienced 'brain death'. Brain death can have a variety of causes, including damage to the brainstem and / or damage to neuronal metabolism. Where meaningful recovery is unlikely, it is usually appropriate to withdraw life support and permit natural death to occur. Nurses should be familiar with the protocols - including consent for ceasing life support, supporting the family / carers / significant others, and facilitating organ donation where relevant.
Many neurological diseases are progressive, and it may be distressing for family members, carers and / or significant others to witness the gradual decline, or the 'loss' of the person they know. Nurses must be familiar with psychological and practical support services available, and proactively direct people to these where required.
Palliative care for renal disease
Patients are typically palliated when they enter end-stage renal disease (glomerular filtration rate <15 mL per minute). Patients may develop chronic kidney disease and, progressively, end-stage renal disease for a number of reasons; most commonly in the UK as a result of poorly-controlled diabetes mellitus and / or hypertension.
Management of renal disease in the palliative setting
The goal of the management of renal disease in the palliative setting is to delay and control disease progression, achieve effective management of the patient's symptoms and provide emotional support at the end-of-life.
Typically, management involves the withdrawal of dialysis ('conservative management'). It is relatively common for people with end-stage renal disease to choose to discontinue dialysis. Even with dialysis withdrawn, the aim is to delay and control the disease and its symptoms. When dialysis is withdrawn, a patient may experience a significant burden of symptoms. These are the most common, and their management:
- Pain: patients often experience somatic and / or neuropathic pain. Pain may originate from musculoskeletal (e.g. renal osteodystrophy), vascular (e.g. ischaemia, necrosis), or dermal (e.g. xerosis, caliciphylaxis) causes. It is usually managed using analgesics; however, these must be used with caution due to the risk of prolonged elimination and the retention of physiologically-active metabolites.
- Gastrointestinal problems: patients with end-stage renal disease may experience a range of gastrointestinal complaints, including anorexia, nausea and vomiting, and diarrhoea and constipation.
- Dyspnoea: this can arise from volume overload, or comorbid disease. Techniques for management of dyspnoea apply.
- Delirium: this may be due to an accumulation of metabolic by-products in the blood, sepsis and / or hypoxia. Delirium is usually managed using medication, including sedatives such as haloperidol and midazolam. The underlying causes are also addressed wherever possible.
- Seizures and / or myoclonic jerking: some patients will experience tonic-clonic seizures, and more will experience myoclonic jerking. These are usually managed using medication therapy, including anti-seizure medications such as phenytoin and benzodiazepines.
- Skin problems: patients with end-stage renal disease may experience a range of different skin problems, due to the accumulation of metabolic by-products in the blood:
- Generalised pruritus (itching). If mild to moderate, itching is usually managed using topical emollients, moisturisers and / or ultraviolet light therapy; if severe, medications such as antihistamines may be prescribed.
- Xerosis (dry, roughened skin), usually along the extensor surfaces of the arms and / or legs. Standard nursing skin care practices should be utilised.
- Calciphylaxis (the precipitation of calcium salts into the tissues); this causes lesions and results in severe ischaemic pain and tissue necrosis. This is relatively rare. Typically, calciphylaxis is managed aggressively using phosphate-binding, antibiotic and analgesic medications.
- Anaemia: this occurs due to the insufficient production of erythropoietin, and can be severe. Most patients receive supplemental doses of erythropoietin. However, many patients choose to avoid aggressive or invasive interventions such as this.
Patients with end-stage renal disease are at increased risk of developing severe problems such as sepsis, vascular necrosis and complex neuropathy. Patients should be assessed for their risk, and preventative interventions implemented where necessary. If these develop, aggressive intervention is often required; however, some patients may opt for a non-aggressive approach. Nurses should familiarise themselves with their patients' advance care planning documentation, and proactively implement this.
Many patients with chronic renal disease enter end-stage renal failure with no clear goals or priorities for their care. One of the nurse's roles is to facilitate end-of-life discussions and engage patients in advance care planning. Most patients with end-stage renal disease are grateful when healthcare professionals initiate end-of-life discussions without prompting.
Nurses should realise that outcomes for patients with end-stage renal disease vary widely. However, the withdrawal of dialysis provides some prognostic predictability. Generally, the length of survival following the withdrawal of dialysis averages 8 to 12 days, though this varies based on the patient's residual renal function, age and comorbidity, etc.
The death of patients with end-stage renal disease is characterised by uraemia. Most significantly, hyperkalaemia occurs, and cells cannot sustain normal electrical activity. Patients may display signs of toxicity, including hyperreflexia, mobility issues, cognitive changes and eventually coma. These symptoms can be distressing to witness; it is important that the patient's family, carers and significant others are informed of the possibility they will occur.
Palliative care for liver disease
In the UK, a significant number of patients receive palliative care for end-stage liver disease. Liver disease is frequently caused by cirrhosis due to Hepatitis B and C, alcoholism and obesity ('non-alcoholic steatohepatitis'). Patients may also receive palliative care for liver cancer.
In many cases, liver disease may be effectively managed, and patients may survive for a number of years. However, when a patient develops decompensated cirrhosis, their likelihood of medium- to long-term survival is significantly diminished. Decompensated cirrhosis is evidenced by issues such as portal hypertension and associated bleeding, ascites and encephalopathy.
Management of liver disease in the palliative setting
These are the most common symptoms of end-stage liver disease, and their management:
- Ascites: a common, variable and unpredictable complication. Usually managed with aggressive medication therapy - diuretics such as spironolactone and furosemide. Large ascites may also be treated using paracentesis, alongside intravenous albumin.
- Spontaneous bacterial peritonitis: bacterial infection of the peritoneal cavity is an increasingly common complication. It is usually treated with aggressive quinolone antibiotic therapy.
- Portosystemic encephalopathy: often due to an accumulation of metabolic by-products in the blood, but may also be seen in patients with concurrent sepsis, potassium imbalances, dehydration and / or bleeding. Patients with encephalopathy display mood changes, difficulties with speech, agitation, confusion and eventual coma. Treatment involves correcting its reversible causes, where possible. Vitamin and mineral supplementation, particularly in patients with end-stage liver disease due to alcoholism, may also be useful.
- Variceal bleeding: varices are most commonly due to increased portal pressure and portosystemic shunt through collateral vessels. The risk of a varix bleeding is determined by its size and location (with varices in the oesophagus generally the most significant), as well as the severity of the underlying liver disease. Antihypertensive medications may be prescribed to minimise the risk of variceal bleeding, and surgical banding may be used to control active bleeding. The average mortality for a variceal bleed is upwards of 50%, as these bleeds are usually haemorrhagic in nature and result in rapid, severe decompensation.
- Pain: less common in end-stage liver disease than in end-stage renal disease. Pain is usually managed using analgesics. Generally, NSAIDS are avoided in patients with cirrhosis, as these often lead to the retention of salts and rapid decompensation.
- Generalised pruritus (itching): it is relatively common for patients with end-stage liver disease to develop pruritus. If mild to moderate, itching is usually managed using topical emollients, moisturisers and / or ultraviolet light therapy; if severe, medications such as antihistamines may be prescribed.
- Jaundice: hyperbiliruinaemia results in a yellow- or orange-coloured tinge to the patient's skin, sclera and urine. Hyperbiliruinaemia can lead to a range of problems, including anorexia, nausea and vomiting, fat malabsorption and occasionally encephalopathy. Jaundice is most often treated through endoluminal stents to decompress the biliary system; however, many patients refuse this invasive procedure. Although jaundice is considered characteristic of liver disease, many patients will not develop jaundice.
The life expectancy and dying trajectory of a person with end-stage liver disease is difficult to predict. However, the following factors are predictors of mortality in patients with end-stage liver disease:
- A serum albumin level of ≤30g/L.
- A serum bilirubin level of ≥51μmol/L.
- Poorly-controlled ascites.
- Hepatic encephalopathy.
- Gastrointestinal haemorrhage, haematemesis, gross blood evident on endoscopic examination.
Nurses should recognise the stigma associated with these diseases. There is particular stigma attached to alcohol-induced cirrhosis, the risk-taking behaviours associated with hepatitis C, and obesity-related non-alcoholic steatohepatitis. Nurses must care for patients in an open and non-judgemental way.
End-stage neurological, renal and liver diseases can have complex, systemic effects, and may cause distressing symptoms; therefore, nurses working in palliative care settings must be able to effectively care for patients with these conditions. This chapter has introduced the types of neurological, renal and liver diseases for which a person may be admitted to palliative care, the pathophysiology of these conditions, and the common signs and symptoms. This chapter has also provided a comprehensive overview of strategies which may be used to effectively manage the symptoms of end-stage neurological, renal and liver diseases in the palliative care context.
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