Chapter 5: Palliative Care for Neurological, Renal and Liver Diseases

Introduction

Neurological, renal and liver diseases are relatively common causes of palliation in the United Kingdom (UK). These conditions can have complex, systemic effects, and may cause distressing symptoms such as pain, dyspnoea and fatigue; therefore, it is essential that nurses working in palliative care settings are able to effectively care for patients with these conditions. This chapter introduces 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 that a nurse will identify (including those which predict a patient's impending death). This chapter also provides 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. This chapter will provide you with the fundamental skills and knowledge required to provide effective nursing care to patients with neurological, renal and / or liver disease in palliative care settings.

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.

Important note

This chapter assumes a basic knowledge of human anatomy and physiology. If you feel you need to revise these concepts, you are encouraged to consult a quality nursing textbook.

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Palliative care for neurological disease

There are a number of neurological conditions for which a person may receive palliative care. In the UK, the most common of these conditions are the dementias (including Alzheimer's disease), major stroke, catastrophic traumatic brain injuries and progressive neurological diseases - such as motor neurone disease (also referred to as amyotrophic lateral sclerosis [ALS]), Parkinson's disease, multiple sclerosis, Huntington's disease and the muscular dystrophies. In comparison to other conditions for which a person may receive palliative care, particularly cancer, progressive neurological conditions in particular are rare; however, nurses working in palliative care settings must ensure they understand how to effectively care for patients with these conditions. This is particularly true because many neurological diseases are slowly progressive, and a patient may experience a distressing loss of physical and cognitive function, and require palliative care support, for an extended period.

Depending on the type of neurological condition for which a person is receiving palliative care, they may present with a variety of different symptoms. Pain is common to all neurological conditions, and it may take the form of generalised musculoskeletal pain, muscle cramps, skin pressure pain and / or other pain specific to the condition (e.g. neuralgias). Many people with neurological conditions also experience dyspnoea - for example, due to infection, weakness of the respiratory muscle, poor posture (particularly for people who are bed- or wheelchair-bound) and / or coexistent cardiac or lung pathology. Dysphagia - often accompanied by excessive salivation, due to weakness of the facial muscles and poor lip control - is another common problem for people with neurological conditions. People with neurological conditions may also experience one of a range of other symptoms - most commonly including constipation, mobility problems, fatigue and insomnia, restlessness / agitation, issues with speech / communication and mobility, cognitive changes, and depression / anxiety. Consider the following case study example:

Example

Angela is a graduate nurse working in an aged care facility. One of the people she works with is Mrs Chisholm, a fifty-six year old woman with ALS. Mrs Chisholm experiences a range of symptoms, including chronic musculoskeletal and nerve-related pain, immobility and fatigue. As Mrs Chisholm's condition progresses, Angela notices the development of new symptoms, including dysphagia, excessive salivation and speech / communication problems.  Mrs Chisholm also reports increasing anxiety about her condition and her progression towards end-of-life. Angela works with Mrs Chisholm, her family and other members of the interdisciplinary health care team to develop advance care planning documentation which details how Mrs Chisholm wishes for her symptoms to be managed during the end-of-life period.

Management of neurological disease in the palliative care setting

There are a number of key goals for the management of neurological disease in the palliative care setting:

  1. To achieve effective management of the patient's symptoms.
  2. To minimise the problems which may develop from the neurological disease.
  3. To maximise the ability of the patient to live a fulfilling life.

Activity

You are encouraged to read the National Institute of Health and Clinical Excellence's Parkinson's Disease in Over 20s: Diagnosis and Management (2006), Multiple Sclerosis in Adults: Management (2014), Motor Neurone Disease: Assessment and Management (2016) guideline, or the current equivalents. These guidelines can be obtained online, by searching for their title.

The management strategies used in the care of a patient with a progressive neurological condition depend on the specific symptoms that the person experiences. This may involve the management of the patient's:

  • Pain: this can be managed using both pharmacological and non-pharmacological interventions. You will study pain management in the palliative care setting in greater detail in a later chapter of this module.
  • Dyspnoea: you studied the management of dyspnoea in end-stage respiratory disease in the previous section of this unit; you should revise this section now, if required. The principles of managing dyspnoea discussed in this section also apply to the management of dyspnoea in patients with neurological conditions.
  • Dysphagia: the management of this problem generally requires the involvement of an allied health professional, such as an occupational therapist or a speech pathologist. Management of dysphagia may require the use of aids, dietary changes and interventions to manage excessive salivation (e.g. anticholinergic medication to reduce saliva production, propranolol / pineapple / papaya supplements to decrease the consistency of saliva).
  • Constipation: managing constipation generally involves simple strategies such as increasing intake of fluids and fibrous foods, encouraging mobility, reducing medications which may impair gastric motility (where possible), and use of oral aperients (usually a combination of a stimulant laxative with a stool softener).
  • Mobility problems: for many progressive neurological conditions, the management of mobility problems centres on the use of medications to reverse the motor symptoms associated with the condition. Exercise within the person's capacity is also important in maintaining their physical functionality. Again, this may require the involvement of an allied health professional, such as an occupational therapist or a physiotherapist.
  • Infection: people with neurological conditions are prone to infection - most commonly pneumonia and septicaemia arising from the urinary tract. Prevention of infection is key - for example, by using standard infection prevention practices such as hand hygiene. Treatment of infection is also important, and usually focuses on the use of antibiotics. 

You will study strategies to manage the other general symptoms associated with end-of-life in greater detail in a later chapter of this module.

It is important to highlight that patients receiving palliative care for a progressive neurological condition are at particular risk of psychological comorbidity - most notably, depression and anxiety. As highlighted earlier in this section of the chapter, many neurological diseases are slowly progressive and people may 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). The management of psychological comorbidity - including the use of both pharmacological strategies (e.g. antidepressant medication such as amitriptyline) and non-pharmacological strategies (e.g. counselling, relaxation, etc.) - is an important consideration for patients with progressive neurological conditions.

There are a number of key clinical signs which indicate the end-of-life for a person with a neurological condition; review the following list:

  • 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 be conscious of identifying these signs in their holistic assessment of patients with neurological conditions, and be proactive in preparing the patient and their significant others - both physically and psychologically - for the immediate end-of-life period.

It is important to note that nurses working in palliative care settings may occasionally care for patients who have experienced 'brain death' - that is, death of the central nervous system whilst there is still artificially-supported cardiopulmonary function. Brain death can have a variety of different causes, including damage to the brainstem (e.g. major head trauma, intracranial haemorrhage, infarcts, lesion, etc.) and / or damage to neuronal metabolism (e.g. due to drug overdose, renal failure, hypoglycaemia, etc.). In patients who have no central nervous system function but artificially-supported cardiopulmonary function, and where meaningful recovery is unlikely, it is usually appropriate to withdraw life support (e.g. ventilation) and permit natural death to occur. Nurses should ensure they are familiar with the protocols in use in the healthcare facility where they work - including in relation to consent for ceasing life support, and also in supporting the patient's family / carers / significant others and in facilitating organ donation where relevant.

The care of the family members, carers and / or significant others of patients with neurological disease is also an important consideration for nurses in palliative care settings. Remember: many neurological diseases are progressive over time, and it may be significantly distressing for family members, carers and / or significant others to witness the gradual decline of somebody they care about, or the 'loss' of the person they know. Nurses working in palliative care settings must ensure they are familiar with the psychological and practical support services available to the family members, carers and / or significant others of patients receiving palliative care, and that they proactively direct people to these services where required.

Palliative care for renal disease

In the UK, patients are typically palliated when they enter end-stage renal disease. This is the final stage of kidney disease, usually identified when the glomerular filtration rate decreases below 15 mL per minute - a level inadequate to support life (note that the normal glomerular filtration rate is 60 to 90 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, chronic kidney disease is a result of very common conditions such as poorly-controlled diabetes mellitus and / or hypertension. Consider the following case study example:

Example

Brad is a nurse working in a renal outpatient clinic. One of his patients is Mr Williams, an eighty-nine-year-old man with chronic kidney disease resulting from decades of poorly-controlled diabetes mellitus. Mr Williams' glomerular filtration rate had recently decreased below 15 mL per minute. The interdisciplinary team caring for Mr Williams identifies that, because of his low glomerular filtration rate, dialysis may no longer be appropriate for Mr Williams. Additionally, due to Mr Williams' advanced age and the fact that he has a number of other significant comorbidities, including major heart disease, he is not considered a candidate for renal transplantation. The team decide to discuss palliation, including conservative management involving the withdrawal of renal dialysis (refer to the discussion in the following section), with Mr Williams and his family.

Management of renal disease in the palliative setting

The goal of the management of renal disease in the palliative setting is the same as for all other conditions - that is, to delay and control disease progression, achieve effective management of the patient's symptoms and provide emotional support at the end-of-life.

Activity

You are encouraged to read the National Institute of Health and Clinical Excellence's Chronic Kidney Disease in Adults: Assessment and Management (2015) guideline, or the current equivalent. This guideline can be obtained online, by searching for its title.

Typically, the management of renal disease in the palliative setting involves the withdrawal of dialysis - referred to as 'conservative management'. Research suggests that it is relatively common for people with end-stage renal disease to choose to discontinue dialysis, which is often seen as a significant burden. Even though dialysis is withdrawn, however, the aim of palliative care for patients with end-stage renal disease is to delay and control the disease and its symptoms. It is important for nurses working in palliative care settings to realise that when dialysis is withdrawn, a patient may experience a significant burden of symptoms. Read the following about the most common of these symptoms and their management in palliative care settings: 

  • Pain: in end-stage renal disease, 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 opioid and / or non-opioid analgesics; however, in patients with end-stage renal disease, opioids in particular must be used with caution due to the increased 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. You will study strategies to manage these and other general symptoms associated with end-of-life in greater detail in a later chapter of this module.
  • Dyspnoea: this is usually due to volume overload, but may also result from comorbid disease such as chronic heart failure and / or chronic obstructive pulmonary disease (COPD), both common in patients with end-stage renal disease. Remember: you studied the management of dyspnoea in end-stage respiratory disease in the previous section of this unit; you should revise this section now, if required. The principles of managing dyspnoea discussed in this section also apply to the management of dyspnoea in patients with end-stage renal disease.
  • Delirium: in patients with end-stage renal disease, this may be due to an accumulation of metabolic by-products in the blood (including medications), sepsis and / or hypoxia. Delirium is usually managed using medication therapy, including sedatives such as haloperidol and midazolam. The underlying causes are also addressed wherever possible.
  • Seizures and / or myoclonic jerking: approximately 10% of patients with end-stage renal disease will experience tonic-clonic seizures, and a larger number will experience myoclonic jerking (or 'muscle twitches'), as a result of terminal uraemia, and the accumulation of metabolic by-products in the blood. Again, seizures and myoclonic jerking 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 one or more of a number of different skin problems, due to the accumulation of metabolic by-products in the blood:
  • Generalised pruritus (itching), usually due to elevated levels of calcium phosphate and urochrome. If mild to moderate, itching is usually managed using topical emollients, moisturisers and / or ultraviolet light therapy; if severe, however, medications such as antihistamines may be prescribed.
  • Xerosis (dry, roughened skin), usually along the extensor surfaces of the arms and / or legs. This predisposes patients to a significant risk of fissures, ulcers and infection. 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 a relatively rare complication; however, its effective management is essential to improving the patient's quality of life. Typically, calciphylaxis is managed aggressively using phosphate-binding, antibiotic and analgesic medications.
  • Anaemia: this occurs due to the insufficient production of erythropoietin in the kidneys, and it can be severe. Most patients with end-stage renal disease receive supplemental doses of commercially-produced erythropoietin at some point in their disease. Remember: many patients with terminal disease choose to avoid aggressive or invasive interventions such as supplemental erythropoietin.

Nurses working in palliative care settings must also realise that patients with end-stage renal disease, and particularly those not receiving dialysis, are at significantly increased risk of developing severe problems such as sepsis, vascular necrosis and complex neuropathy. Patients should be assessed for their risk of developing these conditions, and preventive interventions implemented where necessary. If a patient does develop these complications, aggressive intervention is often required to improve the patient's quality of life; however, some patients, and particularly those with significant disease, may also opt for a non-aggressive approach. As always, it is essential that nurses familiarise themselves with their patients' advance care planning documentation, and that they proactively implement this documentation in the care of the patient.

Research suggests that 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 key roles in caring for a patient with end-stage renal disease in palliative care settings, therefore, is to facilitate end-of-life discussions and engage patients in advance care planning. Research highlights that most patients with end-stage renal disease are grateful when the healthcare professionals they work with initiate end-of-life discussions without prompting.

It is important for nurses working in palliative care settings to 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 in patients with end-stage renal disease following the withdrawal of dialysis averages 8 to 12 days, though this varies based on factors such as the patient's residual renal function, age and comorbidity, etc.

The death of patients with end-stage renal disease is characterised by uraemia - which translates literally as 'urine in the blood', but involves the accumulation of metabolic by-products in the blood. Most significantly, hyperkalaemia - or the accumulation of potassium - occurs, resulting in a situation where the body's cells, including the cardiac cells, cannot sustain normal electrical activity. Patients may display various signs of toxicity, including hyperreflexia, mobility issues, cognitive changes and eventually coma. These symptoms can be distressing to witness; therefore, it is important that nurses prepare the patient's family, carers and significant others of the possibility they will occur.

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Palliative care for liver disease

Interestingly, liver disease is one of the only major causes of death in the UK whose incidence is rising. In the UK, a significant number of patients receive palliative care for end-stage liver disease. Most commonly, liver disease is caused by cirrhosis due to Hepatitis B and C, alcoholism and obesity (referred to as 'non-alcoholic steatohepatitis'). Patients may also receive palliative care for liver cancer.

It is important to highlight that, in many cases, liver disease - and particularly cirrhosis - may be effectively managed, and that patients may survive with significant liver disease 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. Consider the following case study example:

Example

Alex is a nurse working in a community outreach clinic. One of her patients is Joe, a forty-eight-year-old man who is homeless and has a seventeen year history of alcoholism. Joe has recently been diagnosed with decompensated cirrhosis. One morning, Joe presents to the clinic with a grossly swollen abdomen, characteristic of ascites (the accumulation of fluid in the peritoneal cavity). He is also confused and disoriented, which Alex recognises as classic signs of encephalopathy. Alex realises that Joe is in need of acute care in the short-term, and also palliative care in the medium-term.

Management of liver disease in the palliative setting

Read the following about the most common symptoms of end-stage liver disease, and their management in palliative care settings:

  • Ascites: this is a variable and unpredictable complication, common in patients with end-stage liver disease. It is usually managed with aggressive medication therapy - particularly diuretics such as spironolactone and furosemide, with doses titrated to match the patient's need. Large ascites may also be treated using paracentesis, or the insertion of a suprapubic catheter into the peritoneal cavity to drain the fluid within, and the concurrent administration of intravenous albumin to control fluid shifts and minimise the risk of refractory (or recurrent) ascites.
  • Spontaneous bacterial peritonitis: the bacterial infection of the peritoneal cavity is another common complication in patients with end-stage liver disease. It is usually treated with aggressive quinolone antibiotic therapy; however, nurses working in palliative care settings must be aware that quinolone-resistant bacterial peritonitis is becoming increasingly common.
  • Portosystemic encephalopathy: this is often due to an accumulation of metabolic by-products in the blood (e.g. sedative drugs, ammonia), but it may also be seen in patients with end-stage liver disease and concurrent sepsis, potassium imbalances, dehydration and / or bleeding. Patients with encephalopathy display mood changes (e.g. irritability, somnolence), difficulties with speech, agitation, confusion and eventual coma. The treatment of encephalopathy 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 in preventing and managing encephalopathy.
  • Variceal bleeding: varices are engorged, tortuous vessels; in patients with end-stage liver disease, they develop 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 such as propranolol may be prescribed to minimise the risk of variceal bleeding, and surgical banding of varices may be used to control active bleeding. It is important for nurses working in palliative care settings to recognise that 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: although pain is less common in end-stage liver disease than in end-stage renal disease, discussed in the previous section of this chapter, it is possible and therefore an important consideration for nurses. Pain is usually managed using opioid and / or non-opioid analgesics; however, in patients with end-stage renal disease, opioids in particular must be used with caution due to the increased risk of prolonged elimination and the retention of physiologically-active metabolites. Generally, non-steroidal anti-inflammatory drugs (NSAIDS) are avoided in patients with end-stage liver disease involving cirrhosis, as these often lead to the retention of salts and rapid decompensation.
  • Generalised pruritus (itching): as with end-stage renal disease, discussed in the previous section of this chapter, it is relatively common for patients with end-stage liver disease to develop pruritus. Again, if mild to moderate, itching is usually managed using topical emollients, moisturisers and / or ultraviolet light therapy; if severe, however, medications such as antihistamines may be prescribed.
  • Jaundice: this is the accumulation of bilirubin in the blood due to liver dysfunction (termed hyperbiliruinaemia), resulting 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, in severe cases, encephalopathy. Jaundice is most often actively treated through the use of endoluminal stents to decompress the biliary system; however, it is important for nurses to note that many patients in palliative care settings choose not to undergo this invasive procedure. Also, nurses must realise that although jaundice is considered characteristic of liver disease, it is important to highlight that many patients with liver disease - including end-stage liver disease - will not develop jaundice.

The life expectancy and dying trajectory of a person with end-stage liver disease is difficult to predict. However, it is generally accepted that 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.
  • Cachexia.
  • Poorly-controlled ascites.
  • Hepatic encephalopathy.
  • Gastrointestinal haemorrhage, haematemesis, gross blood evident on endoscopic examination.

In caring for patients with end-stage liver disease, it is important for nurses to recognise the stigma associated with these diseases. There is particular stigma attached to alcohol-induced cirrhosis, the risk-taking behaviours associated with hepatitis C (e.g. unsafe sexual and drug-injecting practices, etc.), and obesity-related non-alcoholic steatohepatitis. Nurses must ensure they care for patients with these diseases in an open and non-judgemental way; this is important in providing high quality care at the end-of-life. 

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Conclusion

As you have seen throughout this unit, end-stage neurological, renal and liver diseases can have complex, systemic effects, and may cause distressing symptoms; therefore, it is essential that nurses working in palliative care settings are 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 that a nurse will identify (including those which predict a patient's impending death). 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.

Reflection

Now we have reached the end of this chapter, you should be able:

-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.


Reference list

Faull, C., de Caestecker, S., Nicholson, A. & Black, F. (Eds). (2012). Handbook of Palliative Care (3rd ed.). Hoboken, NJ: Wiley-Blackwell.

Hole, B., Tonkin-Crine, S., Caskey, F.J. & Roderick, P. (2016). Treatment of end-stage kidney failure without renal replacement therapy. Seminal Dialysis, 29(6), 591-506.

Johnson, S. (2016). Symptom management in patients with Stage 5 CKD opting for conservative management. Healthcare, 22(4), E72-E75.

Matzo M. & Witt Sherman, D. (Eds). (2010). Palliative Care Nursing: Quality to the End of Life (3rd ed.). New York, NY: Springer Publishing Company.

National Institute of Health and Care Excellence. (2006). Parkinson's Disease in Over-20s: Diagnosis and Management. Retrieved from: https://www.nice.org.uk/guidance/cg35/resources/parkinsons-disease-in-over-20s-diagnosis-and-management-975388237765

National Institute of Health and Care Excellence. (2014). Multiple Sclerosis in Adults: Management. Retrieved from: https://www.nice.org.uk/guidance/cg186/resources/multiple-sclerosis-management-of-multiple-sclerosis-in-primary-and-secondary-care-35109816059077

National Institute of Health and Care Excellence. (2015). Chronic Kidney Disease in Adults: Assessment and Management. Retrieved from: https://www.nice.org.uk/guidance/cg182/resources/chronic-kidney-disease-in-adults-assessment-and-management-35109809343205

National Institute of Health and Care Excellence. (2016). Motor Neurone Disease: Assessment and Management. Retrieved from: https://www.nice.org.uk/guidance/ng42/resources/motor-neurone-disease-assessment-and-management-1837449470149

Philipps, J.L. & Ferguson, C. (2016). New approaches to care for acute stroke patients with uncertain prognoses. International Journal of Palliative Nursing, 22(10), 471-478.


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