Effectively Managing Symptoms During the Final Days_Dr Ong Eng Eng

Effectively Managing Symptoms During the Final

Days Dr Ong Eng Eng

MBBS(MelbUni) MRCP(UK)ClinDipPallMed(RACP)

Palliative Medicine Physician

Hospital Pulau Pinang

Johor Bahru

2012

When are

patients at the

end of life?

Understanding Disease Trajectory • Understanding disease processes

- Natural History of disease

- Acute disease process

- Concurrent disease processes

• Prospects of altering natural history and

consequences of altering natural history

Disease Trajectory

KPS

Time / Years 0

Long term limitations with intermittent serious episodes

Chronic heart / lung failure

Hospital admissions

Hospital admissions

Disease Trajectory

KPS

Time / Years 0

Stroke / dementia/ frailty

Prolonged dwindling

Disease Trajectory

KPS

Time / Years 0

Incurable Cancer

Short period of evident decline

Disease Trajectory

KPS

Time / Years 0

Acute illness with complete recovery

Pneumonia / MVA / Dengue HF / UGIT bleed

Disease Trajectory

KPS

Time / Months 0

Palliative intervention Decision

making at the end-of-life

Why prognosticate? • Information for patients

o Goal setting and prioritizing

o Determining place and type of death

o Assisting in open communication

o Attending to affairs

• Treatment plan- anticipating challenges

• Optimal decision making

• Referral to hospice care/ palliative caregivers

• Service provision and planning

Consequence of not diagnosing

dying

Ultimately this leads to complex bereavement and

formal complaints about care.

Patients and families feel dissatisfied.

How to diagnose DYING? • First must understand disease process.

• Look at disease trajectory

• Rule out reversible factors

• Clinical assessment:

- History (appetite, oral intake, mobility, time frame)

- Examination (ECOG/KPS, BP, respiration)

- Investigations(Alb, Hb, Ca,)

Changes in the dying process Changes Manifest by/ Signs

Fatigue, weakness Decreasing function and hygiene

Inability to move around bed

Inability to lift head off pillow

Cutaneous ischemia Erythema over bony prominence

Skin breakdown, wounds

Decreasing appetite, food intake, wasting

Anorexia

Poor intake

Aspiration, asphyxiation

Weight loss, muscle and fat loss

Decreasing fluid intake, dehydration Poor intake Aspiration

Peripheral oedema with low albumin

Dry mucous membrane/ conjunctiva

Changes in the dying process Changes Manifest by/ Signs

Cardiac dysfunction, renal failure Tachycardia

Hypertension followed by hypotension

Peripheral cooling

Peripheral cyanosis

Mottling ( livedo retcularis)

Venous pooling along dependant skin surfaces

Dark urine

Oliguria, anuria

Changes in the dying process Changes in neurological function Signs

Decreasing level of consciousness Increasing drowsiness

Difficulty awakening

Non responsive to verbal and tactile stimuli

Decreasing ability to communicate Difficulty word finding

Mono syllable or short sentences

Delayed or inappropriate response

Not verbally responsive

Terminal delirium Day- night reversal

Agitation, restlessness

Purposeless, repetitive movements

Moaning, groaning

Respiratory dysfuction Change in ventilatory rate

Decreasing tidal volume

Abnormal breathing pattern

Weissman, EPEC 2005

Changes in the dying process Changes in neurological function Signs

Loss of ability to swallow Dysphagia

Coughing, choking

Loss of gag reflex

Build up of oral and tracheal secretion, Gurgling

Loss of sphincter control Incontinence of urine and bowel

Maceration of skin

Perineal candidiasis

Pain Facial grimacing

Tension in forehead

Loss of ability to close eyes Whites of eyes showing

Rare unexpected events Burst of energy just before death occurs, the ‘golden glow’

Aspiration, asphyxiation

Performance Status

ECOG Performance Scale

Grade Definition

0 Fully active with no restriction as before illness

1 Restricted in physically strenuous activity but able to

carry on normal light activity (housework, office job)

2 Ambulatory and capable of self care but unable to carry

out any work activities. Up and about >50% of waking

hours

3 Capable of only limited self care. Confined to bed or chair

>50% of waking hours

4 Completely disabled, cannot carry out any self care,

totally confined to bed or chair

Karnofsky’s Performance Scale

Definition Rating

(%)

Criteria

Able to carry on normal

activity and to work. No

special care needed

(ECOG 0-1)

100 Normal. No complaints. No evidence of

disease

90 Able to carry on normal activities. Minor

signs or symptoms of disease

80 Normal activity with effort. Some signs or

symptoms of disease

Unable to work. Able to

live at home and care for

most personal needs.

Varying amount of

assistance needed

(ECOG 2-3)

70 – 60 Cares for self. Unable to carry on normal

activity or to do active work

50 Requires considerable assistance and

frequent medical care

Karnofsky’s Performance Scale

Definition Rating

(%)

Criteria

Unable to care for self.

Requires equivalent of

institutional or hospital

care. Disease may be

progressing rapidly

(ECOG 4)

40 Disabled. Requires special care and

assistance

30 Severely disabled. Hospital admission is

indicated although death not imminent

20 Very sick. Hospital admission necessary.

Active supporting treatment necessary

10 Moribund. Fatal process progressing

rapidly

0 Dead

Recommendations of WG of European Association

for Palliative Care

• Factors with definite correlation with prognosis that has been identified o Clinical prediction of survival

o Performance status

o Signs and symptoms of cancer-anorexia syndrome ( Anorexia, weight loss, dysphagia and xerostomia)

o Delirium o Dyspnea

o Some biologic factors ( leucocytosis, lymphocytopenia and C reactive protein)

o Prognostic scores

Recommendations of WG of European Association

for Palliative Care • Factors for which a correlation has been indicated but not confirmed or for which

a statistical significance has been identified in patient populations with less advanced disease or for which contradictory data have emerged o Pain o Nausea o Tachycardia o Fever o Neoplastic pattern ( primary and secondary sites) o Comorbidity o Anemia o Hypoalbuminemia o Proteinuria o Serum calcium level o Serum sodium level o Lactate dehydrogenase and other enzymes o Patient characteristics ( age, sex, and marital status)

• Factors with controversial indicators

o Multi dimensional QOL questionnaires- possibly suggestive of prognostic capacity as a result of identifying component of physical symptoms contained within them

Physical Care

Optimizing symptom relief and

comfort • Management of distressing symptoms must always

continue especially if a patient is dying.

• Distressing symptoms may escalate during the last 48 hours of life.

• Pain management and knowledge of other distressing symptoms is essential.

• Most convenient and least distressing methods of delivering essential care must be practiced.

• Crisis medications must be available for PRN use whenever needed.

Reduce Medicalisation

• Review all current medications and discontinue drugs which are non-essential

• Counsel family and document

• Consider all interventions carefully limiting to only essential ones which will result in a likely overall benefit for the patient. (blood tests, BP/SpO2 monitoring, IV antibiotics)

• Issues of artificial hydration and nutrition

Increase Caring

• Be sensitive to patients’ needs (empathy)

• Tailor nursing care plan to suit individual patient needs. (eg. Turning pt vs causing pain)

• Change medication from oral to subcutaneous route if necessary

• Always provide good mouth care.

• Empower family who are willing to care to help patient.

What are some of the practical issues in the

last days?

Specific symptom management in the

final days

• Practical issues in managing patients in the

last days

o Pain

o Terminal delirium

o Terminal secretions

o Hydration and nutrition

Pain

Pain in the final days

• 40% had severe pain in the last few days of life Lynn et al, 1997. SUPPORT Inv, Annals of Internal Med, 126,97-106

• Only 1-2% had ‘crescendo’ pain in the last hours of life. Fine PG,1999. J Pain and Symptom Manage,17,296–300.

Coyle et al,1994. J Pain Symptom Manage,9,44–47.

• Overall, pain tends to decrease in the dying phase.

• Fainsinger et al, 1991,J Palliat Care,7,5–11.

Ellershaw et al, 2001. J Pain and Symp Manage,21,12-17 Mercadante et al, 2000.J Pain Sympt Manag,20,104–112

• Challenge in terminal phase o Reduced ability of patients to report pain

o Family and health care team work together in assessing comfort o May need to still titrate opioids and hence choice of short acting

opioids o Route of drug administration o Balancing analgesia with side effects

Pain in the final days

• Non pharmacological approaches

• Existential and psychosocial pain

• Use of opioids in terminal phase

o No evidence that it is associated with hastened

death or increased mortality

Sykes et al,2003. Lancet Oncol,4,312-318

Terminal Delirium

Terminal delirium

• Delirium has been defined as, “an aetiologically non-specific, global, cerebral dysfunction characterized by

o Acute onset and fluctuating course o Inattention o Altered consciousness level o Disorganized thinking, paranoia o Altered perception, memory, psychomotor behavior and

emotion o Altered sleep-wake cycle

• 25-88% of dying patients exhibit delirium

• Up to half of delirium episodes are not noted by clinicians • Associated with increased morbidity in patients who are

terminally ill

Terminal delirium

• 3 forms of delirium:

o Agitated (hyperactive) delirium

• In 13% to 46%of patients near the end of life

• characterized by agitation and hallucinations

o Non agitated (hypoactive)

• Up to 80% of patients near the end of life

• Presents as a decreased level of consciousness with somnolence

• Can be mistaken for sedation due to opioids or obtundation in the last days of life

o Mixed

Look for reversible causes of agitation

• Pain

• Urinary retention

• Full rectum

• Nausea

• Cerebral irritability

• Anxiety and fear

• Metabolic encephalopathy dt organ failure

• Electrolyte imbalance (Na, Ca, blood glucose, O2 sat)

• Infection

• Haematological abnormalities

• Nutritional deficiencies

• Paraneoplastic syndromes

• Withdrawal (alcohol, benzodiazepines)

• Side effects of medications e.g. steroids, opioids, benzodiazepines, anticholinergics (antiemetic, TCAs, antisecretory, antihistamines) or a combination of these drugs

Non-pharmacological interventions

• All patients near the end of life can be considered at high risk for delirium.

• Non pharmacological therapies are important in patients with terminal delirium.

• In non palliative care settings, there is evidence that non pharmacological interventions to management may result in faster improvement in delirium and slower deterioration in cognition.

• Breitbart et al. Agitation and Delirium at the End of Life. JAMA, December 24/31;2008. Vol 300: No.

24:2898-2910

• Avoid immobility and early mobilization • Minimize the use of immobilizing catheters,

intravenous lines and physical restraints • Mobilize/ambulate by nursing staff as

tolerated • Daily physiotherapy and occupational

therapy if needed • Orientation protocol

o Orientation board or familiar objects (i.e. family photographs) in patient rooms

o Reorient communications with the patient e.g. current events discussion

o Provision of clock and calendar

• Appropriate environmental stimuli

o Use of radio, tape recorder and soft lighting

oNoise reduction strategies (e.g., silent pill crushers, vibrating beepers, reduction in hallway noise)

• Visual and hearing aids

o Spectacles, magnifying lenses

o Portable amplifying devices, earwax disimpaction

• Monitor closely for dehydration

o Encourage oral fluid if appropriate

o Hydration with hypodermoclysis if needed

• Monitor bowel and bladder

oConstipation

o Urinary retention

Mouth care

• Review medications o Discontinue/minimize benzodiazepine, anticholinergics,

antihistamines o Eliminate drug interactions, adverse effects, modify drugs

accordingly

• Environment o Provide a stable environment (room and staff)

• Adequate sleep

o Sleep protocol: at bedtime, provide warm drink (milk or herbal tea)

o Relaxation tapes or music, and back massage o Adjust schedule to allow sleep (e.g.,rescheduling medications,

vital sign checks, procedures)

Pharmacological treatments

• Antipsychotics - 1st line of pharmacological

treatment for terminal restlessness or

delirium:

o Haloperidol

o Chlorpromazine

• Selected newer atypical antipsychotics

(risperidone, olanzapine, quetiapine) are

equally as effective as haloperidol with less

EPS effects and causes less sedation

• Han et al. Psychosomatics 45:4, 2004: 297-301

Delirium rating scale (DRS) scores

• DRS scores Baseline Day 2 End of therapy

• All (n=30 patients) 20.1 13.3 12.8

(SD 3.5, range 14 to 28) (SD 6.1, range 3 to 26) (SD 6.4, range 3 to 26)

• Chlorpromazine (n=13) 20.62 (SD 3.88) 12.08 (SD 6.5) 11.85 (SD 6.74)

• Haloperidol (n=11) 20.45 (SD 3.45) 12.45 (SD 5.87) 11.64 (SD 6.1)

• Lorazepam (n=6) 18.33 (SD 2.58) 17.33 (SD 4.18) 17.0 (SD 4.98)

Mini-Mental-State-Examination (MMSE) scores

• MMSE scores Baseline Day 2 End of therapy

• Chlorpromazine (n=13 ) 10.92 (SD 8.87) 18.31 (SD 10.61) 15.08 (SD 10.43)

• Haloperidol (n=11) 13.45 (SD 6.95) 17.27 (SD 8.87) 17.18 (SD 12.12)

• Lorazepam (n=6 ) 15.17 (SD 5.31) 12.67 (SD 10.23) 11.5 (SD 8.69)

Extrapyramidal Symptom Rating Scale scores

• ESRS score Baseline End of therapy

• Chlorpromazine (n=13) 7.42 (SD 8.08) 5.08 (SD 4.48)

• Haloperidol (n=11) 7.0 (SD 6.8) 5.54 (SD 6.76)

• Lorazepam (n=6 ) 7.6 (SD 10.11) 12.2 (SD 8.93)

• Jackson KC et al. Drug therapy for delirium in terminally ill. Cochrane database of systematic review 2009, issue 4

• First line treatment

• Haloperidol o IM, IV, or PO**

o Initial dose–0.5-1.0mg IM or IV repeat dose q 30 minutes to titrated to response. Usual maintenance up to 10- 20mg per day.

o Watch for extrapyramidal reactions, neuroleptic malignant syndrome,and tardive dyskinesia at high doses.

o Geriatric patients usually started at 25-50%.

• Chlorpromazine o IM, IV, PR, PO**

o Initial dose–25mg IM, PO, PR,25mg IV diluted and given at rate of no more than 1 mg per minute. Repeat dose in1 to 4 hours as needed. Titrate to response (up to 400mg q 4 hours).

o Watch for significant cardiovascular side effects (hypotension, arrhythmias, angina), extrapyramidal reactions, neuroleptic malignant syndrome, tardive dyskinesias. Geriatric patients usually started at 25-50%.

Kehl K et al.Treatment of Terminal Restlessness:A Review of the Evidence. Journal of Pain & Palliative Care Pharmacotherapy, Vol. 18(1) 2004.

Recommendations for newer atypical

antipsychotic agents

• Newer atypical antipsychotics ( risperidone, olanzapine) not shown to be superior to haloperidol

• Should be considered in patients

o Who require high dose haloperidol for control of delirium

o Who have increased likelihood of developing extrapyramidal or cardiac manifestation of haloperidol toxicity

• However, 30% of dying patients with terminal delirium do not have their symptoms adequately controlled by antipsychotic medications.

• If these medications are ineffective, or if sedation is desired, consider 2nd line drugs – sedative agents: o Midazolam

o Phenobarbital

o Propofol

Palliative Sedation • The option of palliative sedation for the control of

symptoms such as delirium should be discussed with the patient and family while the patient still has capacity to participate in decision making.

• Fears that sedation will hasten death should be addressed.

Drugs Stat & p.r.n. doses Common range

Midazolam 1-5mg SC/IV

20–60mg/24h CSCI (up to 240mg

reported)

** tolerance develops rapidly

Propofol 10mg IV 10mg/h IV

Lorazepam 0.5-2mg SL 0.5-2mg Q8hrly

Haloperidol 0.5-1mg SC/IV

(Titrate every 30min to effect) 10-20mg/24h CSCI/CIVI

Chlorpromazine 25mg SC/IV 50-400mg/24h CSCI

Phenobarbital 100mg SC/IV 300-600mg/24h CSCI

(Incompatible with many drugs)

Risperidone 0.5 mg PO 0.5 mg bd

Olanzapine 2.5 mg PO 2.5-5 mg q6hrly

Important Reminders

• The decision to search more aggressively for causes

of delirium depends on:

o The patient’s and family’s goals for care

o The burdens of an evaluation

o The likelihood that a specific remediable cause

will be found.

• The decision to intervene depends on the degree

to which delirium is distressing.

Important Reminders

• Some degree of sedation may be warranted if patient is clearly distressed.

• The decision should be discussed with patient if possible, and the family.

• Emphasize clearly the goals of treatment are primarily comfort and dignity.

• Benzodiazepines can cause "paradoxical" worsening of confusional states.

Terminal Secretions

The Death Rattle

• Death rattle: inability to clear resp. secretion due to

too weak to swallow or expectorate secretions

resulting in pooling of fluid in the hypopharynx,

leading to noisy and moist breathing.

• Seen in 23-92% of dying patients

• Occurs between 17 to 57 hours before death

The Death Rattle

• Patients are usually unconscious, therefore not

aware of the noise.

• The relatives are very aware of it and usually upset

believing that the patient is ‘drowning’ in his/her

own secretions and that it must be causing them

discomfort and distress.

Terminal Secretions • 2 types of rattle:

o “Real DR” (type 1) responds generally very well to anticholinergic therapy, and is probably caused by non-expectorated secretions with reduced conscious level

o “Pseudo DR” (type 2) is poorly responsive to therapy and is probably caused by bronchial secretions due to pulmonary pathology, such as infection, tumour, fluid retention, or aspiration.

• Rattle disappears in 90% for the patients with real DR.

• Real DR is a strong predictor for death, and 76% (19/25) died within 48h after onset.

• Wildiers et al. Death Rattle: Prevalence, Prevention and Treatment. J Pain Symptom Manage 2002;23:310–317.

Management General Measures

Specific Measures

Non-pharmacological

• Repositioning the patient on their side or in a semi-

prone position to facilitate postural drainage

• Reduce fluid intake

• Reassuring the relatives (Secretions are not causing

suffocation, chocking or distress!)

Pharmacological

• There is currently no evidence to show that

any intervention, either pharmacological or

non-pharmacological, is superior to placebo

in the treatment of death rattle.

• The standard of care is still to use muscarinic

receptor blockers (anticholinergic drugs) to

inhibit respiratory secretions. • Wee B et al. Interventions for noisy breathing in patients near to death. Cochrane Database of

Systematic Reviews 2008, Issue 1

Antisecretory and

antispasmodic drugs Stat dose Dose/24h

Onset

Hyoscine hydrobromide IV/SC 400mcg CIVI/CSCI 1200–

2400mcg

3–5min(IM)

Scopolamine

Transderm Patch

(Hyosine hydrobromide) -

One 1.5 mg patch

~12 h (24 h to steady

state)

Glycopyrronium IV/SC 200mcg CIVI/CSCI 600–

1200mcg

1min(IV)

30min(SC)

Glycopyrronium PO 1mg

(oral:iv=35:1) 200mcg-2mg Q8hrly

30min

Hyoscine butylbromide IV/SC 20mg CIVI/CSCI 60–300mg

<10min

** Duration of action 1-

2h only

Atropine sulphate IV/SC 400mcg CIVI/CSCI 1200–

2000mcg

1min

Atropine sulphate SL 4 drops (1%

ophth. soln) Q4hrly

30min

Pharmacological Management • No evidence for significant difference among Atropine,

Hyoscine Butylbromide, or Scopolamine for the treatment of death rattle at presently recommended dosages.

• The primary difference in these drugs is whether they are tertiary amines which cross the blood brain barrier (scopolamine, atropine) or quaternary amines, which do not (glycopyrrolate).

• Drugs that cross the blood-brain barrier are more likely to cause central nervous system (CNS) toxicity (sedation, delirium).

• Wildiers et al Atropine, hyoscine butylbromide or scopalamine are equally effective for treatment of death rattle

in terminal care. J pain and Symp Manage. 2009;

Pharmacological Management

• Side effects of anticholinergics:

• Blurred vision

• Sedation

• Confusion

• Delirium

• Restlessness

• Hallucinations

• Palpitations

• Constipation

• urinary retention

Other considerations

• Opioid e.g. CSCI morphine

o Esp. if patient is tachypnoeic

o The noise may be reduced by slowing the RR

• Gentle suction if patient is deeply unconscious

o Occasionally helps but for little more than a few minutes before secretions re-accumulate

o Watching this aspiration can be upsetting to relatives because it looks painful and unpleasant

Important reminders

• Use antisecretory drugs with caution, esp. if the patient is still conscious! Use hyosine butylbromide or glycopyronium. Hyosine hydrobromide can cause sedation and confusion.

• Rule out APO. • No drug is capable of drying up secretions that

have already accumulated. • Ethical obligation that pts are monitored for

lack of therapeutic benefit and adverse effects

Medical hydration at

the end of life

Hydration • Many healthcare professionals believe that

dehydration is painful and uncomfortable in dying patients.

• Questions: o Is dehydration painful?

o Does it cause distressing symptoms?

o Is there a need to correct dehydration with intravenous fluids or can it be beneficial?

o Are patients in hospitals more likely to receive parenteral hydration and therefore die more comfortably compared to patients at home/hospices where they are less likely to?

o Is dehydration actually the cause of death? o Withdrawal of fluid vs impending death…..cause or effect?

Medically assisted hydration in

palliative care • Insufficient good quality studies to make any

recommendations for practice with regards to the use of medically assisted hydration in palliative care patients.

• RCTs in this review had a short duration of hydration

(two days) to assess effects, and no information on the effect hydration may have on survival.

• May be some benefit in terms of improvement in

sedation and myoclonus • Harm in terms of worsening of fluid retention symptoms

(pleural effusion, peripheral oedema and ascites) • Bruera E et al.Effects of parenteral hydration in terminally ill cancer patients: a preliminary study.

Journal of Clinical Oncology 2005;23:2366–71. • Cerchietti L et al. Hypodermoclysis for control of dehydration in terminal-stage cancer.

International Journal of Palliative Nursing 2000;6:370–4. • Good P et al.Medically assisted hydration in adult palliative care patient. Coch Database of Syst

Review 2009, Issue 4

Symptoms and signs of

dehydration • Symptoms Signs

o Thirst poor tissue turgor

o Dry mouth dry mucous membranes

o Dysphagia enophthalmos

o Altered mental state oliguria

o Constipation confusion/somnolence

o Postural hypotension fatigue

o aesthenia/ apathy vascular collapse

o Headache

Lab Values

o Vomiting Raised serum Na, BU,Hb

o Muscle cramps

Creatinine, osmolality o Nadal et al . Dehydration J Clin Invest 1941; 20:691)

Dry mouth and thirst • Common in palliative care patients esp in

terminal stages • Due to

o Drugs o Mouth breathing o Nasal O2 o Chemotherapy o Radiotherapy o Candidiasis Thirst and dry mouth may not be related to patient’s

level of hydration and may be unresponsive to artificial hydration

What does evidence show? • The only distressing symptoms in the last days are

dry mouth and sporadic thirst. • Musgrave et al. The sensation of thirst in dying patients receiving IV hydration. J Pall Care

1994;11:4:17-21

• From a different viewpoint, Lamerton (1991) argued that patients who are fully hydrated before they die have increased incontinence and dyspnoea due to waterlogged lungs.

• Lamerton R. dehydration in dying patients, Lancet 1991;337:8747:981-2

• Dehydration is asymptomatic if thirst is adequately addressed by frequent mouth care, and the introduction of artificial nutrition might increase hunger, nausea, oropharyngeal secretions and demanding behaviour

• Mc cann R et al. Nutrition and hydration for the terminally ill. JAMA 1995, 273:218-222

Dehydration in the dying patient

• Investigated relationship between symptoms and dehydration in 82 patients with advanced malignancy

• High proportion of dying patients have essentially normal electrolytes

• Lack of association between thirst and biochemical abnormalities

• Lack of association between thirst and administration of IV fluids

• Lack of association between presence or absence of

respiratory secretions and level of hydration • Ellershaw J et al. Dehydration and the dying patient. J Pain and Symp Manage 1995; 10: 192-197

Dehydration in the dying patient

• 22 patients who died within 48 hours after admission bloods taken

• 12 had essentially normal results

o Urea slightly high

• 10 abnormal o 5 uraemic- mean 24.7 ( range from 21.5-58.0)

o 5 uraemic and hypercalcemic

• Mean urea 23.3 (range 12.5-58.0)

• Mean corrected Calcium 3.36(range 2.84-4.05)

Oliver et al .Terminal dehydration. Lancet 1984;2:631

Can distressing symptoms in the dying

patient be lessened with dehydration? • Patients who are fully hydrated before they die have increased incontinence

and dyspnoea due to pulmonary congestion. • Lamerton R. dehydration in dying patients, Lancet 1991;337:8747:981-2

• Dehydration will cause a reduction in gastrointestinal and pulmonary secretions and as a result will lessen vomiting, coughing and pulmonary congestion.

• Zerwekh J. The dehydration question…whether or not to administer IV fluids to the dying patient. Nursing 1983;13:1-47

• There is a lessened need for analgesia as the patient becomes more dehydrated.

o Alterations in the metabolic state, leading to a decreased level of consciousness ranging from lethargy to coma.

o Ketone accumulation causing loss of sensation, resulting from calorific deprivation.

o Increased production of opioid peptides or endorphins when the body is in a state of water deprivation or fasting.

o Decreased oedema around tumors may reduce pain • Holden C. Nutrition and hydration in the terminally ill cancer patient. Hosp J 1993;2-3:15-

35 • Printz L et al. Is withdrawing hydration a valid comfort measure in the terminally ill?

Geriatrics 1988;43:11: 84-88 • Dunphy K. Rehydration in palliative and terminal care. Pall Med 1995;9: 221

Other reasons for not rehydrating • Medicalisation of dying

• Can shift focus to medical treatment or medical equipment, distracting from reality of patients’ death

• Inhibit already limited mobility of patients

• Impede the involvement of relatives

• Baerg K et al. Effects of dehydration on the dying patient. Rehab Nurs 1991.16;3:155-6

• Dunphy K. Rehydration in palliative and terminal care. Pall Med 1995;9: 221

Possible contraindications • Raised intracranial pressure

• Fluid overload

• Massive ascites

• Pleural effusions

• Oedematous extremities

• Lymphoedema

• Gastro-intestinal obstruction

• Poor access

Possible indications • Hypercalcemia

• Hypoglycaemia

• Hyponatremia

• Vomiting

• Acute renal failure

• Diuretic overdose

• Metabolic derangements

Relief of dry mouth and thirst • Mouth washes • Treatment/ prophylaxis of candida • Regular sips of fluids • Ice chips to suck • Artificial saliva • Lubrication of lips • Dental hygiene • Denture care

Hydration at end of life • Artificial hydration does not reduce thirst at end of

life

• Keeping a patient slightly dry may be beneficial

• Ensuring good mouth care relieves thirst better than

hydration alone.

• Hypodermoclysis may be considered in certain

cases.

Artificial nutrition at the end of life

Artificial feeding in advanced

disease • Most dying patients lose their appetite

(anorexia) and lose weight (cachexia).

• Family members and other caregivers may be concerned the patient is “starving to death” and wish to intervene in the last weeks of life.

• There is no evidence that providing nutritional support either enterally or parenterally improves morbidity or mortality in terminally ill patients, including those with advanced dementia.

Treatable causes of anorexia cachexia

in advanced malignancy • Chronic pain • Mouth conditions (dryness, mucositis resulting from

chemotherapy, and infections such as oral candidiasis or oral herpes)

• Gastrointestinal motility problems (e.g., constipation) and reflux

esophagitis. • Reversible metabolic derangements • In patients with cancer who are being treated with

chemotherapy, radiation therapy and/or medications such as opioids or nonsteroidal anti-inflammatory drugs, an attempt should be made to determine whether anorexia and weight loss are due to mucositis, changes in gastrointestinal motility and nausea as the effects of treatment, rather than progressive disease.

• Ross DD, Alexander CS: Management of common symptoms in terminally ill patients: Part 1. Fatigue, anorexia, cachexia, nausea and vomiting. Am Fam Physician 2001;64:807–814

Management of Weight Loss Once

Treatable Causes Have Been Ruled Out • Nonpharmacologic therapy • Provide patient and family education about the

pathophysiology of the anorexia and cachexia in terminal illness

• Information regarding ineffectiveness of forced feeding

and hydration. • Eliminate dietary restrictions: allow the patient to choose

favorite foods and fluids, and to have them when desired

• Reduce portion size and eliminate foods whose odor the

patient finds unpleasant. • Explore the emotional and spiritual issues related to the

patient's weight loss.

Management of Weight Loss Once

Treatable Causes Have Been Ruled Out • Pharmacologic therapy • *Dexamethasone (Decadron), 2 to 20 mg taken orally each

morning; effect may diminish after 4 to 6 weeks of use. • Megestrol (Megace), 200 mg taken orally every 6 to 8 hours;

titrate dosage to achieve and maintain desired effect. • Dronabinol (Marinol), 2.5 mg taken orally two or three times daily;

titrate dosage to patient tolerance and to achieve and maintain desired effect.

• Androgens (e.g., oxandrolone [Oxandrin], nandrolone

[Durabolin]) are currently under investigation for their effects on appetite and weight.*— Pharmacologic therapy should be considered an adjunct to general non pharmacologic measures; a drug should be discontinued if no benefit occurs after two to six weeks of treatment.

• Information from Module 10: Common physical symptoms. In: Education for physicians on

end-of-life care. Chicago: EPEC Project, The Robert Wood Johnson Foundation, 1999.

Tube feeding in patients with

advanced dementia • Does not prevent malnutrition. • Does not prevent the occurrence or increase the healing of pressure

sores • Does not prevent aspiration pneumonia • Does not provide comfort, improve functional status, or extend life. • High complication rates with increased peri-procedure mortality • Better delivery of nutrients but no reduction in infection and can cause

serious local and systemic infection • Alternative is hand feeding. Though not effective in preventing

malnutrition and dehydration, hand feeding allows the maintenance of patient comfort and intimate patient care.

• Finucane et al. Tube feeding in patients with advanced dementia: a review of the evidence . JAMA 1999. 13;282:1365-1370 • Winter SM et al .Terminal nutrition: Framing the debate for the withdrawal of nutritional support in terminally ill patients. Am J

Med 2000;109:740–741.

Prolonged tube feeding

complications • Despite adequate calories and protein provided,

patients still showed o weight loss and severe depletion of lean and fat body

mass.

o measured mean serum protein and micronutrient status were in the low normal range.

o Hemoglobin, hematocrit, and serum zinc and carotenoid levels were below normal in a sizable proportion of patients.

o Pressure ulcers were present in 65% of patients.

o Weight loss was associated with longer time on tube feeding and more pressure ulcers.

o Henderson CT, et al. Prolonged tube feeding in long-term care:nutritional status and clinical

outcomes. J Am Coll Nutrition 1992;11:309–325.

PEG Complications • Wound infection

• Leakage

• Cutaneous or gastric ulceration

• Pneumoperitoneum

• Temporary ileus

• Tube blockage and breakdown

• Major complications: Necrotising fasciitis, oesophageal and gastric perforation, fistula inadvertent removal of feeding tube

• Aspiration o Common esp in neurologically impaired patients o Mortality high, 60%

o Role of jejunal feeding tube

Artificial feeding in advanced

malignancy • Not acceptable

o Terminal phase o Advanced bowel obstruction o Anorexia- cachexia alone in context of cancer o Just to prolong life- futile in context of whole patient and their

quality of life

• Once initiated, can be difficult to withdraw • Must be reviewed regularly • Acknowledge that further deterioration is due to disease

and not sufficient intake of nutrition • Abdominal discomfort and nausea in patients when they

ate to please their families • McCann RM et al.Comfort care for terminally ill patients. The appropriate use of nutrition and

hydration. JAMA 1994; 272(16): 1263-6

Risk of aspiration with hand

feeding • In terminal phase, risk vs benefit ratio of

intervention need to be considered

• May be acceptable to allow patients to eat and drink

• When survival measured in weeks to months, thickened fluids may be preferable to reduce risks

• When very close to death, any fluids and food may be acceptable

• Explanation to family and patient very important

The Good death

The Good Death

• The patient is comfortable and symptom free

• There are no personal matters left unresolved

• The patient accepts the inevitability of death

• The relatives are prepared and accept death

The Good Death • Any last request or act fulfilled to maintain a lasting

good memory for relatives

• Family and loved ones are around and last hopes also fulfilled

• Spiritual and religious desires fulfilled

• To die proudly when it is no longer possible to

live proudly. Death of one's own free choice, death at the proper time, with a clear head and with joyfulness, consummated in the midst of children and witnesses: so that an actual leave-taking is possible while he who is leaving is still there. ~Friedrich Nietzsche,Expeditions of an Untimely Man

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