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© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto Symptom Management at the End of Life Ian Anderson Continuing Education Program in End-of-Life Care

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© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Symptom Management at the End of Life

Ian Anderson Continuing Education Program in End-of-Life Care

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Symptoms at the End of LifeCurrent literature emphasizes that too many people still die in painEqually or even more distressing are:

Fatigue (asthenia)Anorexia/cachexiaDrowsiness or insomniaConfusionAnxietyDyspneaNausea and vomitingConstipation & diarrhea

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Effects on Quality of LifePhysical sufferingInability to enjoy remaining life:

Simple tasks become a challengeIsolated from loved onesUnable to fulfill remaining life goalsWorst fears about dying become realizedDestruction of hope for any quality of life

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Quality of End-of-Life CareThe Patients’ View:

FIVE Components of Quality End-of-Life Care

1) Adequate pain and symptom management2) Avoiding inappropriate prolongation of dying 3) Achieving a sense of control4) Relieving burden 5) Strengthening relationships with loved ones

Singer P.A., Martin D.K., Kelner M., Quality End-of-Life Care: Patient’s Perspectives, JAMA 1999 281(2) 163-168

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

ObjectivesDescribe the management of common symptoms at the end of life

Develop a preventive approach to managing patient and family expectations and needs

Identify clinical problems whose management/diagnosis may merit further exploration

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Three General Rules1. Any given symptom is as distressing to an

individual person as that person claims it to be

2. All treatments, their risks, benefits, & alternatives need to be discussed in context of the dying person’s values, culture, goals & fears

3. When illness is advanced & death very near, the exact causes of any given condition are not relevant and investigations may be inappropriate

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Perception of Symptoms at EOLPerception of symptoms are worsened by anxiety, fatigue, emotional and psychological stressPresence of a psychological component does NOT mean distress should be ignored Exploring and alleviating contributing sources of stress will help:

1. Control symptoms2. Lead to better decision-making and 3. Improve quality of life

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Patient & Family EducationEducation on likely course of illness, symptoms &possible complications :

1. Decreases natural fear & anxiety of the “unknown”2. Develops a plan to alleviate/control symptoms 3. Facilitates decision-making & helps plan for future4. Helps patients and families to know when to seek prompt

medical attention5. Dispels myth that dying = unavoidable suffering

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Approach to Symptom Management

Multidisciplinary team approach“Around the clock” medication for continuous symptomsBreakthrough medicationSymptom diaryRating symptoms on a scale (ESAS/PPS/KPS)Frequent re-assessments Palliative care consult if uncertain, not responding or difficult to control

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

AstheniaMost distressing symptom in dying patientsEasy tiring, generalized weakness, or mental tirednessMay be seen as sign of “failure” or “giving up”by dying person and loved onesDifficult to assess. Some tools available:1. Edmonton Functional Assessment Tool (EFAT)2. Fatigue self-report scale3. Fatigue symptom checklist

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Etiology of AstheniaLikely multifactorial:

Direct tumor effects on energyParaneoplasticsyndromesHumoral and hormonal influencesAnemia

Chronic infectionsSleep disturbancesFluid & electrolyte disturbancesDrugsOver-exertion

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Non-Pharmacological Management of AstheniaDevelop a plan with patient and families to allowthem to perform enjoyed activities:

Coordinate activities with times of most energyArrange for help from family, home care, CCAC, hospice, nursing homeUse energy conservation strategies (occupational/physical therapy consult)Change medications and/or times Daytime rest and effective sleep at night

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Pharmacological Management of Asthenia

Among the most difficult symptoms to treatSteroids: mechanism not clear –? Euphoria

dexamethasone 2-4 mg po BIDbenefit may decrease after 4-6 weeks

Metamphetamines: act as psychostimulantMethylphenidate 2.5-5 mg qAM, q noon Typical dose 10-30 mg qAM & q NoonSE: tremulouness, anorexia, tachycardia,

insomnia &myocardial ischemia

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Anorexia/Cachexia SyndromeWeight loss, anorexia, fatigue, chronic nauseaInflammatory process, loss of fat and muscle tissueVery common in advanced illness Frequently associated with astheniaMay be seen as sign of “failure” or “giving up”Increased nutrition often does NOT reverse or improve cachexiaIncreased nutrition will not halt disease progression

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Anorexia/CachexiaEtiologies not well understood:

1. Hormonal mediators2. Humoral mediators: IL-1, IL-6, TNF,

leukemia inhibitory factor, D factor3. Host-tumor factors4. Alterations in metabolism5. Greater energy expenditure than supply

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Anorexia/Cachexia- TreatmentSearch for and treat specific causes contributing to secondary cachexia:

1. Nausea/vomiting2. Anxiety3. Pain4. Constipation/diarrhea

If no specific cause found, treat anorexia if:1. Quality of life = enjoyment of food 2. To give sense of normalcy in daily living

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Non-Pharmacological Interventions

Educate:1. Common part of dying process2. Natural endorphins prevent hunger

Encourage trials of favorite foodsAvoid gastric irritants: e.g. spicy foods, milkSmall frequent mealsAvoid disagreeable or nauseating smellsNutritional supplements

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Pharmacological Interventions(Appetite Stimulation)

Steroids: mechanism not clear–? Euphoria/ PG inhibitiondexamethasone 2-4 po mg BIDbenefit may decrease after 4-6 weeks

Progesterone Drugs: mechanism not clear – inhibits production of cachexin/TNF ? appetite stimulantSE: nausea/edema/hypercalcemiacushingnoid/decreased survivalmegestrol acetate: 200 mg q6-8h

range 480-1600 mg/day

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Pharmacological Interventions

Mirtazapine (Remeron): 15-30 mg qhsAndrogens: currently being studied

effectiveness not clear

No evidence for survival benefit or increase in lean muscle mass

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

DyspneaMost frightening symptom for patients, families and healthcare providers One of the most poorly understood areas of palliative careExperience may not correlate with any measures of severity OR perceptions of loved onesVariable prevalence Assess importance to quality of life: ask about exercise tolerance, activities

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Causes of Dyspnea

Pulmonary causesAirway obstructionCardiac causesAnemia

Muscle weaknessIntra abdominal processPsychological

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Dyspnea — TreatmentExacerbated by anxiety of dying patient and family membersEducate:

1. Experience may not equal perception2. Etiologies 3. Changes in respiratory patterns may

not equal dyspnea4. Drugs will remove perception of dyspnea

but may not alter respiratory patternNon-pharmacological & pharmacological

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Non-Pharmacological Interventions

Avoid exacerbating activities & be sensitive to sense of isolationNormalize emotional responses to dyspneaLimit people in roomReduce room temperature, maintain humidityOpen window and allow to see outsideUse a fan gently blowing across face Avoid irritants, e.g. smokeElevate head of bedRelaxation therapy

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Pharmacological InterventionsOxygen: may help even if not necessary by pO2 or Sats

Opioids: venodilators, sedativesdecreases sensitivity of ribcage musclesacts centrally to decrease perception of dyspneadoes not increase pCO2intermittent therapy if symptoms intermittentnebulized bronchospasm not indicated

Benzodiazepines/Anxiolytics:decrease anxietydecrease thoraco-abdominal response

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Pharmacological Interventions

Steroids: not helpful in all causes of dyspneause for bronchospasm, SVC obstruction, lymphangitic carcinomatosis, tracheal obstruction

Thoracentesis, pleurodesis, paracentesisPalliative radiotherapy if mass lesionInhaled bronchodilators if obstructive airway component

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

HemoptysisRanges from streaking of sputum to massive bleeding > 200 cc/24 hrsFrighteningThankfully rare!Etiologies: tumor, bronchitis, pneumonia, pulmonary embolism, low platelets, coagulopathyIf massive : MD at bedside

Opioids/ Benzodiazepines iv/sc pushHide with dark towels

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Nausea/VomitingNausea: caused by stimulation of GI lining, chemoreceptor trigger zone in base of fourth ventricle, vestibular apparatus or cerebral cortexVomiting: a neuromuscular reflex centered in the medulla oblongataMediators: serotonin, dopamine, acetylcholine,

histamineOrigin in cerebral cortex = learned response (anticipatory nausea)

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Etiologies of Nausea/Vomiting1. Metastases2. Meningeal irritation3. Movement4. Mentation5. Medications6. Mucosal irritation

7. Mechanical obstruction

8. Motility9. Metabolic10. Microbes11. Myocardial

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Nausea/Vomiting — Treatment

Non- Pharmacological:

Relaxation/Cognitive TrainingTENS/Acupuncture? Evidence of benefit

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Nausea/Vomiting — TreatmentPharmacological

Dopamine Antagonists: 1st LineHistamine AntagonistsAnticholinergicsSerotonin Antagonists

Prokinetic AgentsAntacidsCytoprotective agentsSteroidsCannabinoidsBenzodiazepines

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Bowel ObstructionNausea & vomiting: accumulation of intraluminalfluid and ineffective/altered peristalsis Colicky abdominal pain and bloatingRx: decrease fluid secretions into gut lumen

1. Anticholinergic (buscopan, scopolamine)2. Antiemetic (haloperidol, avoid metoclopramide if colicky pain)3. Analgesia (opioid)

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Bowel Obstruction (con’t)3. Antisecretory –octreotide 100 ug q8-12 hrs or 10 ug/hr IV infusion4. steroid

■ minimize use of NGT

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

ConstipationPresents as:

painbloatingnausea, vomitingoverflow incontinencetenesmusfecal impactionbowel obstruction

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Etiologies of Constipation

DrugsMetabolicDietMotilitySpinal cord compression

Mechanical obstructionDehydrationAutonomic dysfunctionIleus

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Constipation — TreatmentRectal exam to detect: stool mass

fecal impactionhypotonia

Treatment of causes not appropriate in advanced illnessTailor investigations and treatment to stage of illness

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Constipation — TreatmentNon-Pharmacological:

Scheduled toiletingPosition: sit upEncourage fluid intake if not in advanced stages of illnessAvoid bulk agents e.g bran may precipitate obstruction

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Constipation — TreatmentPharmacological

Stimulant laxativesOsmotic laxativesDetergent laxatives (stool softener)Prokinetic agentsEnemas: lubricant stimulants

large volume enemasOpioid antagonist (methylnaltrexone) if opioid-induced (not available in Canada)

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

DiarrheaMore than 3 loose stools/ 24-hour periodLess common than constipationIf occurs > 3 weeks = chronicAt EOL commonly due to overuse of laxatives or infection/bacteria or Candida overgrowthMay lead to: dehydration

malabsorptionfatiguehemorrhoidsperianal skin breakdownelectrolyte imbalance

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Etiologies of DiarrheaDrugsInfectionEnteral feedsPartial bowel obstructionOverflow incontinence

MalabsorptionEmotional, psychological stressGI bleedingRadiotherapyTumor

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Non-Pharmacological Interventions

Rehydration, electrolyte correction Avoid milk, gas forming foodsHold laxativesConsider bulk agents such as bran but use with caution

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Pharmacological InterventionsAdsorbent – kaolin, attapulgite

Mucosal prostaglandin inhibitors – ASA, mesalazine, bismuth

Opioids – codeine, morphine, diphenoxylate, loperamide

Octreotide

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Fluid Balance/EdemaHypoalbuminemic due to cachexia/anorexia as illness progressesVenous congestionLymphatic congestionWorse with artificial hydration

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Non-Pharmacological Interventions

Limit fluid intakeIncrease intake of salty foodsElevate feet when sittingTEDS stockings to improve venous returnWatch for skin breakdown

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Pharmacological Interventions

DiureticsMetolazoneSpironalactone

Watch electrolytes

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Skin UlcersSkin care is poorly taughtOften relegated to nursing staffCan cause: significant pain

isolation odorsinfections

Management is preventiveTeam approach

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Skin — Practical aspectsKeep skin clean and dryAvoid iodine containing solutionsProtect pressure points with dressingsUse draw sheets to move/turn patientUse foam pads (not donuts)Special mattresses – air or air flotation

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

DressingsThree general types:

Alginates: exudative bleeding woundsHydrogels: low exudate, necrotic, leg

ulcersHydrocolloids: pressure areas, exudates,

leg ulcers

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Pressure UlcersStage I: precursor stage – red, blanches with

pressureStage II: does not blanch, excoriated,

vesiculation, epidermal breakdownStage III: full thickness skin loss, not extending

into subcutaneous tissue, serosanguinous drainage

Stage IV: ulcer into subcutaneous fat, deep fascia, destruction of muscle, osteomyelitis

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Pressure UlcersRisk factors: CHF, atrial fibrillation

Myocardial ischemia Peripheral vascular disease AnemiaMalnutritionAltered level of consciousness Hypoalbuminemia

Causes: gravity, irritation by sweat, urine, feces, perspiration, wound/fistula drainage

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Local Ulcer TreatmentStage I & II: polyurethane filmStage III: hydrocolloid or calcium alginateStage IV: hydrocolloid

hydrogelenzymaticpolysaccharide dantromers

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

OdorsResult of infection, poor hygieneTreat superficial infections with topical metronidazole or silver sulfadiazineIf spread to soft tissue consider systemic metronidazoleNon-pharmacological Rx:

1. open windows/doors 2. kitty litter/activated charcoal in pan under

bed 3. burning candles4. cup of vinegar in room

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Sleep DisturbancesCaused by: Anxiety

GriefPain Uncontrolled symptoms Fears of future

Emotional and psychological support from health care team may be insufficientMay exacerbate asthenia and achievement of symptom controlSleep history to guide Rx

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Non-Pharmacological Interventions

Regular scheduleNaps OK but avoid sleeping all dayControl symptomsAvoid mental stimulation AND distress at nightIncrease daytime physical activityRelaxation therapy, music, imageryAvoid stimulants, alcohol, steroids, metamphetamines at nightExtra bedding in case of cold

© Ian Anderson Continuing Education Program in End-of-Life Care, University of Toronto

Pharmacological InterventionsBenzodiazepines: watch for delirium

Tricyclic antidepressants or sedating ones e.g. trazadone)

Neuroleptics: esp. if “sundowning” a problem