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Palliative care Symptoms

Topic 1

There is no single definition of a 'good death' that reflects the sheer enormity of death. The quality of death can only be "judged by the extent to which individual patient and family priorities are met' (Hudson, 2003).

Nursing interventions

Topic 2

Each patient receiving palliative care will need different nursing interventions.

Palliative care encompasses a vast array of life-limiting illnesses and, within this, a vast range of ages in patients.

Also remember that nursing interventions in palliative care will constantly change as the patient's needs alter, or their condition deteriorates - or as their age changes.

Nursing interventions in palliative care include the following

Interventions

Evaluation of individual health and functional status

Holistic assessment of the patient and their family

Pain management and symptom relief/control

Assistance with activities of daily living

Assistance with living arrangements (hospice unit, acute care facility, or patient's home)

Pressure area care

Nursing for breathing difficulties

Wound management

Nutrition and hydration requirements

Provision of emotional support and comfort for patient and family and significant others

Dealing with psychosocial issues associated with the life-limiting illness and the impact of death

Bereavement support or referral

Education concerning condition, expectations of imminent death, medications (what they 'do' when to use them), when to contact a doctor, etc

Consultation concerning writing or updating Advance Care Directives, power of Attorney, burial requests

Advocacy

Contribution to allied health (nutritionist, physiotherapist, counsellor, home care nurses/domiciliary nursing care, meals on wheels, home visits by GP)

End of life care - care of the deceased

Documentation

Symptom control

Topic 3

Symptoms

Symptoms

  • Pain
  • Constipation
  • Dehydration
  • sleeplessness
  • etc

Principles of Symptom Control

The principles of symptom palliation include:

Careful clinical assessment +/- investigation

Good communication with the patient and family

Treatment- appropriate to cause, individualised to each patient, changed promptly if ineffective, involve colleagues for difficult clinical problems, consistent, not changed unnecessarily, continued reasssessment, appropriate to the stage of the disease and prognosis,

Integrated into a comprehensive plan of multidisciplinary palliative care

Tycross (2008), p 61-64.

Appetite and Weight Loss

Topic 4

Loss of weight (cachexia) and appetite (anorexia) are significant concerns for many palliative care patients, and independently predict a poorer prognosis.

The palliative conditions in which cachexia and anorexia occur most frequently are progressive malignancy, HIV/AIDS, end-stage cardiac failure, end-stage respiratory failure, chronic renal failure, chronic liver disease, and advanced dementia.

Potentially reversible contributors to appetite problems should be sought, and treated as appropriate. 

These may include:

Mouth problems – mucositis, oral thrush

Nausea

Pain

Dysphagia

Constipation

Depression

Family, social and cultural expectations related to food, diet, and body weight

Cachexia Anorexia Syndrome

Topic 5

The cachexia anorexia syndrome is a complex metabolic syndrome associated with cancer and some other palliative conditions.

Cachexia has been defined as involuntary weight loss involving both fat and muscle, due to shifts in metabolism caused by tumour by-products and cytokines.

Cancer cachexia involves inflammation, hypermetabolism, neuro-hormonal changes, and the production of  proteolytic and lipolytic factors.

Appetite loss occurs in over half of all palliative care patients, and weight loss becomes more common in the last weeks and months of life.

Loss of weight and loss of appetite do not always occur together. Some patients have cachexia despite  maintaining a relatively normal appetite and nutritional intake.

In palliative care patients a loss of appetite and decreasing oral intake may be a marker of the transition to end-stage disease.

Other contributing factors should be sought and addressed as appropriate.

Families of patients may require increased support as they deal with this change.

Artificial nutrition (tube feeding) has not been shown to improve life expectancy in patients at end-stage.

Management

management

Think simple first

  • temp with favourites
  • sit them up
  • make it social

Appetite stimulants

Progestogens or corticosteroids can be used to improve appetite in palliative care patients.

The benefits in terms of quality of life and well-being have not been established.

There are no recommendations to guide the choice of dose or the duration of treatment.

Nutrition intervention includes both nutrition counselling, and the use of artificial nutrition.

Artificial nutrition may consist of dietary supplements to be taken orally, or to be given by other routes, such as parenterally or via gastrostomy tubes.

There are significant risks and burdens associated with artificial feeding, which increase with the invasiveness of the route chosen

Decisions about artificial nutrition in palliative care patients should include an assessment of both the benefit and burden of all treatments offered. 

The use of enteral and parenteral nutrition in terminally ill cancer patients approaching the end of life is rarely indicated.

Dying patients lose their ability to swallow safely in the last few days of life.

Studies support the view that dying patients require only minimal amounts of food and fluids to reduce thirst and hunger.

Artificial nutrition

Breathing problems

Topic 6

Breathing problems are a significant issue for many palliative care patients and occur with increasing frequency in the terminal stage of most palliative conditions.

Opioids, either oral or parenteral, are effective in relieving the symptom of breathlessness from both cancer and non-malignant causes.

Problems can include:

Dyspnoea

Cough

Respiratory secretions

Haemoptysis

Obstruction

  • Pulmonary embolus
  • Co-morbid lung diseases (eg, Chronic Obstructive Pulmonary Disease - COPD)
  • Anaemia
  • Weakness and muscle wasting due to cachexia anorexia syndrome
  • Pleural effusion
  • Pericardial effusion or tamponade
  • Ascites or raised intra-abdominal pressure
  • Lung toxicity of chemotherapy or radiotherapy
  • De-conditioning / reduced physical fitness
  • Anxiety / panic / depression
  • Need for aids, equipment, increased home support, or modification of daily activities to minimise breathlessness

Cough

Cough in palliative care patients is often caused by infection, pleural effusion, or the direct effects of malignancy on the lung or airways. 

Co-morbidities such as Chronic Obstructive Pulmonary Disease (COPD) and cardiac failure may also contribute, and should be optimised. 

Antibiotic treatment of infection may sometimes give good palliation of infected secretions.

  • Very distressing if persistent
  • Exhausting
  • Can be dry or moist cough

Complications of persistent cough

  • Cough syncope
  • Headache
  • Pneumothorax
  • Chest wall and muscular pain
  • Pathological rib fractures
  • Exhaustion
  • Insomnia
  • Hoarseness
  • Induction of vomiting / urinary incontinence

Treatment of cough

  • Vocal cord palsy- injection of cord.
  • Pleural effusion – drainage
  • Tumour blockage- endoscopic laser resection
  • Drug therapy;
  • Moist cough: nebulisers, bronchodilators, antibiotics, physiotherapy.
  • Dry cough: nebulisers, anti-tussives.
  • Terminal and too weak to cough effectively: antimuscarinic drying agents.

Haemoptysis

Coughing of blood, usually from the lung, is a distressing problem which is most often associated with lung cancer.

Other sources of blood may be the oropharynx or gastrointestinal tract.

Haemoptysis may be minor or massive; massive haemoptysis may be a life-threatening or a terminal event.

Causes of haemoptysis

  • Tumour
  • Infection
  • Pneumonia
  • Pulmonary embolism
  • Cardiac failure
  • Bleeding diathesis [thrombocytopenia, coagulopathy, drugs e.g. aspirin, NSAD’s]

Treatment

  • Depends on the cause, the severity and stage of disease.
  • Minor bleeds usually only require reassurance.
  • Cough suppressants can be of benefit to elevate the trauma and therefore the potential for bleeding.
  • More persistent bleeding can be treated by radiotherapy.

Respiratory secretions

respiratory secretions can be caused by infection or aspiration, or by pooling of normal oropharyngeal secretions in a patient who is weak or unable to swallow or cough effectively or who has a reduced state of consciousness. 

Is common as death approaches ('death rattle').

No evidence to show that medications for treating respiratory secretions at the end-of-life is effective.

Repositioning the patient from side to side in a semi-upright position is recommended

Suctioning of the oropharynx is sometimes recommended.

Counselling of relatives and caregivers is important. Not all find the symptom distressing

Dyspnoea

Definition; unpleasant awareness of difficulty of breathing. Breathlessness.

Normal breathing is the regular activity in the respiratory centre of brainstem.

Dyspnoea often occurs in patients with terminal disease

Causes

There are many causes of dyspnoea:

Can be progressive and longstanding related to their condition:

Examples

  • COPD
  • CCF
  • Motor neuron disease
  • Lung cancer

Or acute onset related to:

Examples

  • Effusion
  • Pulmonary oedema
  • Pulmonary embolism
  • Infection

If lung tissue is damaged by smoking, recurrent infection, cancer, or other diseases, it cannot exchange oxygen and carbon dioxide with the blood as well as it should. Consequently, breathing becomes more work. Causes for this include:

  • cancer in the lung
  • infection - pneumonia
  • fluid between lung and its lining (pleural effusion)
  • chronic lung damage: chronic bronchitis, emphysema
  • asthma
  • collapse of lung
  • blood clot (pulmonary embolism)
  • damage from radiation treatment for cancer
  • damage from chemotherapy treatment for cancer

The second category involves breathlessness due to weak breathing muscles, which occurs as a result of diseases like ALS (Lou Gehrig's Disease), or advanced cancer. In these instances the lung cannot expand properly. Causes include:

long-term illness and fatigue

neuromuscular diseases such as ALS

Thirdly, abnormal processes in the body, such as anaemia or a failing heart, can cause the lungs to work harder in an effort to supply enough oxygen to the body. Hyperventilation, secondary to anxiety and panic, is also a cause of dyspnea.

Dyspnoea is frightening for patients causing anxiety and stress

Patients may relate it to impeding death

significantly reduce quality of life

Can be stressful for family as well

Some general strategies for reducing dyspnoea are avoiding exacerbating activities and conserving energy by rearranging the household and ADL’s. Keeping the room cool and moist and having a fan blowing gently on the patient can be very helpful. Cool draught, Breathing exercises, Relaxation /distraction therapy,

  • Treatment of dyspnoea depends entirely on the underlying cause. Treatments will also vary depending on whether the dyspnoea is acute or chronic.

  • The treatment of chronic dyspnoea also depends on the cause, and in many cases can be managed successfully with life-style changes, medications and/or herbal and homeopathic remedies, depending on the underlying condition.

  • The goal of management in palliative care is to control symptoms and maximise quality of life without prolonging or hastening death. The following treatment recommendations presume that patients have advanced illness and severe dyspnoea despite appropriate interventions, such as steroids and antibiotics, pleurodesis, transfusion, radiotherapy, chemotherapy or maximal cardiac and pulmonary medications.

  • A calming influence. Reassurance and a calm environment are important elements and the carer needs to be educated in ways they can achieve this in the home.
  • Patients should be allowed to choose the position they wish to sleep even if this means sleeping in a chair.
  • Activity pacing,
  • Breathing retraining
  • Stay with patient to avoid the panic of being alone

  • Avoid common air irritants such as spray deodorants, perfumed cleaning agents, and cigarette smoke wherever possible as these can irritate the lining of the lungs causing breathing difficulties.
  • Don’t smoke
  • Limit salt intake. Sodium causes fluid retention which may complicate some lung conditions making breathing more difficult.
  • Keep household dust and pollen-free as far as possible.

Drug therapy might include:

  • Bronchodilators
  • Cortico steroids
  • Opiods - Morphine, fentanyl, hydromorphone and oxycodone are some of the most common opioids used to manage dyspnoea. These medications reduce ventilation, anxiety and the central perception of dyspnoea (and pain) by binding to opioid receptors Morphine is the most common of the opioids used to relieve dyspnoea, and can be administered via oral, parental, and nebulised routes.

Oxygen therapy

May help where hypoxia is present.

Avoid unnecessary dependence.

Risk of CO2 retention in chronic obstructive pulmonary disease.

Terminal Phase - Dyspnoea

  • Treatment is directed solely at the patients comfort.
  • Investigations to the cause have no place.
  • All active treatments e.g. Antibiotics are avoided.
  • Sedation is the best treatment in these circumstances.
  • Semiconscious and unconscious patients will benefit from sedation delivered through a subcutaneous infusion.

Pleural Effusion

Definition:

is the collection of fluid in the space between the visceral and parietal pleura.

usually associated with malignancy.

Clinical Features of pleural effusion

Cough unproductive

Dyspnoea

Pleuritic chest pain.

Causes of Pleural Effusion

  • Heart failure
  • Cirrhosis with ascites
  • Constrictive pericarditis
  • Peritoneal dialysis
  • Cancer
  • Pulmonary embolism
  • Viral infection

Treatment

  • Not effectively controlled with diuretics unless there is cardiac involvement.
  • Treatment of choice is drainage usually for only a short time e.g. Remove fluid then remove the drain.
  • Pleurodisis is the instilling of a drug into the pleural space.
  • If the patient has an extended life expectancy a pleuro-peritoneal shunt may be inserted.
  • Avoidance of underwater drainage is recommended but may be necessary at some level

Terminal Care – pleural effusion

  • In the terminally ill treatment should only be considered when it is felt that drainage will produce major relief of the symptoms and the simplest method must be chosen if there is seen to be a benefit of treating the symptoms
  • For most patients the simple treatment of treating the cough, dyspnoea and pain is the best options.

Terminal Respiratory Congestion or “Death Rattles”

Definition: this is a term used to describe nosiey/ rattly breathing. Produced by secretions in the hypopharynx

For most patients the simple treatment of treating the cough, dyspnoea and pain is the best options.

Treatment

  • Patients should be positioned on their side sometimes this is all that is required.
  • Suctioning should be avoided if possible and then only in the unconscious patient and suctioning will have no effect on pulmonary secretions.
  • Anticholinergic drugs help dry up secretions in the terminally ill.
  • Hyoscine was the drug of choice but there are new drugs on the market now that are quite effective.

Cheyne-stokes Respiration

Definition: an abnormal pattern of respiration, characterised by alternating periods of apnoea and deep, rapid breathing.

Delirium

Topic 7

The onset of delirium is associated with a worsening prognosis.

Delirium in palliative care patients can be a potentially reversible condition.

Delirium is a condition which causes significant distress to patients, families and staff.

The presence of delirium makes it much harder to assess and treat other problems such as pain or depression.

There is often more than one predisposing and precipitating factor for delirium in palliative care.

May be:

  • hyperactive (presenting with agitation, hyperarousal, and restlessness), or
  • hypoactive (presenting with drowsiness, lethargy and reduced levels of arousal), or
  • a mixed pattern in which the symptoms fluctuate between hyperactive and hypoactive.

Terminal restlessness is a cluster of symptoms. Most often described are a combination of agitation and altered mental state, occurring close to the end of life.

When it causes distress in a dying patient, sedation may be the appropriate goal of treatment, and antipsychotics and benzodiazepines are currently the mainstay of therapy

Fatigue

Topic 8

Fatigue is distressing, common in palliative care patients, and greatly affects quality of life.

Simple self-report scales should be used to routinely assess fatigue.

Regular assessment, attention to reversible factors, and multidisciplinary approaches to treating fatigue are essential.

Factors which may contribute to fatigue in palliative care patients, some of which can be trreated or modified, include:

Factors

  • Anaemia
  • Cachexia and nutritional deficiencies
  • Dyspnoea 
  • Hypothyroidism, hypogonadism, adrenal insufficiency 
  • Metabolic disorders 
  • Reduced activity and deconditioning 
  • Pain 
  • Depression or emotional distress 
  • Insomnia 
  • Chemotherapy and radiotherapy 
  • Adverse effects of medications

Sleeping problems

Sleeping

Sleeping problems (insomnia and poor quality sleep) are common in palliative care patients, and often have a significant impact on quality of life.

difficulty going to sleep, fragmented sleep, or early morning waking.

Insomnia can also be a problem for the patient’s caregivers and contributes to the burden of caregiving

Many palliative conditions cause sleep problems, but especially the cancer associated insomnia syndrome, hepatic encephalopathy in which day night reversal may occur, and cardiac failure causing orthopnoea.

Gastrointestinal System

Topic 9

There are numerous symptoms that can occur from disease of the gastrointestinal tract we will look at the most important ones from a nursing perspective such as:

  • Xerostomia
  • Alterations in taste
  • Nausea and vomiting
  • Bowel complications
  • Ascities

Xerostomia

Definition: Dry and painful mouth.

Saliva

  • Saliva breaks down harmful substances
  • Inhibits dental caries
  • Protects against extremes of temperature
  • Influences taste perception
  • Helps wash away bacteria and food particles
  • Protects the oesophagus from reflux gastric acid

Causes of Xerostomia

  • Decreased production of saliva from:
  • Dehydration
  • fever
  • vomiting
  • Poor intake
  • Mouth breathing
  • Smoking
  • Oxygen therapy
  • Medication

Consequences of Xerostomia

  • Oral candidasis
  • Gingivitis
  • Mouth ulceration
  • Stomatitis
  • Fissuring of the tongue
  • Halitosis and altered taste
  • Problems with chewing and swallowing

Signs and Symptoms Xerostomia

Alterations in Taste

Taste is important for both nutrition and digestion.

Disturbances of taste are often revealed as the cause for eating poorly

Causes of alterations of taste

  • Reduced number of taste buds from
  • Impaired taste bud renewal from
  • Impaired taste bud stimulation
  • Cranial and brain stem lesions
  • Drugs
  • Metabolic disturbances

Causes of alterations of taste

  • Reduced number of taste buds from
  • Impaired taste bud renewal from
  • Impaired taste bud stimulation
  • Cranial and brain stem lesions
  • Drugs
  • Metabolic disturbances

Nausea and Vomiting

Nausea: an unpleasant feeling of the need to vomit

Vomiting: forceful expulsion of gastric contents

Causes of N/V

Causes

  • Cancer; irritation of upper gastrointestinal tract, blood in stomach, obstruction, constipation, cough, pain, anxiety, cancer toxicity, hypocalcaemia, hyponatremia, hepatomegaly.
  • Treatments as a cause; radiotherapy, chemotherapy.
  • Drugs; antibiotics, aspirin, corticosteroids, digoxin, NSAID’s, opioids.
  • Concurrent; alcohol gastritis, cough, infection, peptic ulcer, uraemia.

Anti-emetics

The principals when using anti-emetics are;

  • Commence before vomiting begins if possible
  • Use in adequate doses
  • In combination if necessary
  • Use parenteral or rectal route if necessary.
  • If treatment is unresponsive then look for psychological factors, reassess for perhaps missed physical causes, try something else eg change the anti-emetic or use a different combination.

Related Problems with nausea and vomiting

  • Impaired physical and psychological problems
  • Dehydration
  • Anorexia
  • Weight loss and malnutrition
  • Refusal or delay in treatment

Terminal Phase

  • Nausea and vomiting can continue through the terminal phase at which time the treatment of the underlying cause is inappropriate.
  • The treatment with anti-emetics is continued along with a sedation.
  • Intravenous therapy is also inappropriate.
  • Nasogastric intubation should be avoided.
  • As mentioned a number of drugs can be given either rectally or subcutaneous via a continuous infusion.

Bowel Obstruction

Definition: blockage of the bowel.

Clinical Features – Bowel obstruction

  • Occurs frequently in patients with disseminated cancer.
  • When occurring in patients with advanced cancer it is usually multifactorial.
  • It is also common for it to occur in more than one site. Particularly in patients with widespread peritoneal disease.

Treatment Options

  • The management of bowel obstruction is traditionally surgery, in palliative care it is more conservative.
  • Nasogastric intubation and intravenous fluid
  • Surgery
  • Symptomatic treatment with drug therapy
  • Systemic therapy

Terminal Phase- treatment of bowel obstruction

  • Sole aim is comfort, surgical intervention is inappropriate, nasogastric tubes and intravenous therapy are undignified and unnecessary.
  • Analgesia and anti-emetics are the main focus on treatment

Ascites

Topic 10

Definition: Ascites can be defined as accumulation of excess fluid in the abdomen.

The Palliative Care Expert Group (2010), p259..

This symptom accounts for up to 6% of admissions to hospital and about 20% of patients with peritoneal metastases maybe affected.

.

CAUSES:

  • peritoneal disease,
  • Venous obstruction
  • Lymphatic obstruction

Other causes:

  • Poor diet
  • Liver disease
  • Protein loss

The most common cause is peritoneal infiltration by cancer which may cause both fluid secretion by the peritoneum as well as blockage of local vasculature leading to leakage.

Clinical Features

These are very obvious.

Uniform abdominal distension with fullness of the flanks and the umbilicus may be protuberant.

Discomfort and pain are variable but can be severe especially the discomfort.

The Palliative Care Expert Group (2010), p 259..

  • Abdo distension/heaviness
  • SOB
  • N&V
  • Constipation

RELATED SYMPTOMS ARE: increased abdominal pressure –anorexia.

Oesophageal reflux, nausea and vomiting, dyspnoea [because of elevated diaphragm]

Peripheral, leg and genitalia oedema.

Treatment

  • Observation
  • Systemic therapy [for sensitive tumours]
  • Repeated paracentesis [usually discouraged]
  • Diuretics
  • Intraperitoneal therapy

Constipation

Topic 11

Constipation in palliative care is fundamentally defined by the patient.

If the patient complains of constipation or defecates less than three times per week, assessment of bowel habits is warranted.

The causative factors and impact of constipation should be assessed.

This assessment should be continuous throughout the patient’s care.

An assessment of constipation in the palliative context needs to address opioid induced bowel dysfunction. 

Prophylactic co-prescribing of regular laxatives along with regular opioids is identified as best practice.

Generally, a combination of a softener (e.g., lactulose) and a stimulant (e.g., senna) laxative is recommended

Causes of constipation

Disease

Lifestyle changes

Medications

Metabolic

Neurological

Opioid Induced Constipation

Opioids often cause constipation, or opioid-induced constipation (OIC). OIC is an uncomfortable side-effect that occurs in many patients who receive opioid treatments to relieve pain.

Signs & Symptoms of OIC

Common physical symptoms of OIC include:

Stools that are hard and dry

Difficulty such as straining, forcing, and pain when defecating

A constant feeling that you need to use the toilet

Bloating, distention, or bulges in the abdomen

Abdominal tenderness

Other symptoms of OIC include:

Nausea and vomiting

Tiredness and lethargy

Cramping

Gastric reflux

Appetite loss

Feeling depressed

Treatment of OIC

A goal in patients taking opioids is to achieve a complete bowel movement at least every 2 to 3 days without difficulty (no hard stools, no straining).

However, frequency of defecation is less important than comfortable evacuation.

Assessment of bowel habits is essential.

Treatment of constipation

  • Dietary alteration
  • Adequate fluid intake.
  • Easy access to toilets.
  • Drug therapy such as oral laxatives, suppositories and enemas.
  • Prevention rather than the cure so prophylactic treatment should be introduced early when there are predisposing factors

End of life decisions

Topic 12

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