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
Long term limitations with intermittent serious episodes

Chronic heart / lung failure

Hospital admissions

Hospital admissions

Time / Years

Disease Trajectory
KPS
Prolonged dwindling

Stroke / dementia/ frailty 0 Time / Years

Disease Trajectory
KPS Short period of evident decline

Incurable Cancer

Time / Years

Disease Trajectory
KPS
Acute illness with complete recovery

Pneumonia / MVA / Dengue HF / UGIT bleed

Time / Years

Disease Trajectory
KPS

Palliative intervention

Decision making at the end-of-life

Time / Months

Why prognosticate?
Information for patients
o o o o Goal setting and prioritizing Determining place and type of death Assisting in open communication 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 Fatigue, weakness Manifest by/ Signs Decreasing function and hygiene

Inability to move around bed Inability to lift head off pillow

Cutaneous ischemia Decreasing appetite, food intake, wasting Erythema over bony prominence Skin breakdown, wounds 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 Cardiac dysfunction, renal failure Manifest by/ Signs 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 Decreasing level of consciousness Signs 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

Changes in the dying process

Changes in neurological function Loss of ability to swallow Signs 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 Loss of ability to close eyes Rare unexpected events Facial grimacing Tension in forehead Whites of eyes showing Burst of energy just before death occurs, the golden glow Aspiration, asphyxiation

Performance Status
ECOG Performance Scale
Grade 0 1 2 Definition Fully active with no restriction as before illness Restricted in physically strenuous activity but able to carry on normal light activity (housework, office job) Ambulatory and capable of self care but unable to carry out any work activities. Up and about >50% of waking hours Capable of only limited self care. Confined to bed or chair >50% of waking hours Completely disabled, cannot carry out any self care, totally confined to bed or chair

3 4

Karnofskys Performance Scale

Definition Able to carry on normal activity and to work. No special care needed Rating (%) 100 Criteria Normal. No complaints. No evidence of disease Able to carry on normal activities. Minor signs or symptoms of disease Normal activity with effort. Some signs or symptoms of disease Cares for self. Unable to carry on normal activity or to do active work Requires considerable assistance and frequent medical care

90

(ECOG 0-1)
80 70 60

Unable to work. Able to live at home and care for most personal needs. Varying amount of assistance needed (ECOG 2-3)

50

Karnofskys Performance Scale

Definition Unable to care for self. Requires equivalent of institutional or hospital care. Disease may be progressing rapidly (ECOG 4) Rating (%) 40 Criteria Disabled. Requires special care and assistance Severely disabled. Hospital admission is indicated although death not imminent Very sick. Hospital admission necessary. Active supporting treatment necessary Moribund. Fatal process progressing rapidly Dead

30

20

10

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,17,296300. Coyle et al,1994. J Pain Symptom Manage,9,4447.

Overall, pain tends to decrease in the dying phase.

Fainsinger et al, 1991,J Palliat Care,7,511. Ellershaw et al, 2001. J Pain and Symp Manage,21,12-17 Mercadante et al, 2000.J Pain Sympt Manag,20,104112

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
Acute onset and fluctuating course Inattention Altered consciousness level Disorganized thinking, paranoia Altered perception, memory, psychomotor behavior and emotion o Altered sleep-wake cycle o o o o o

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

Orientation protocol
o

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 board or familiar objects (i.e. family photographs) in patient rooms Reorient communications with the patient e.g. current events discussion Provision of clock and calendar

o
o

 Appropriate environmental stimuli o Use of radio, tape recorder and soft lighting o Noise 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 o Constipation o Urinary retention

Mouth care

 Review medications

o Discontinue/minimize benzodiazepine, anticholinergics, antihistamines o Eliminate drug interactions, adverse effects, modify drugs accordingly o Provide a stable environment (room and staff)

Environment

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 All (n=30 patients) 20.1 13.3 (SD 3.5, range 14 to 28) (SD 6.1, range 3 to 26) Chlorpromazine (n=13) 20.62 (SD 3.88) 12.08 (SD 6.5) Haloperidol (n=11) 20.45 (SD 3.45) 12.45 (SD 5.87) Lorazepam (n=6) 18.33 (SD 2.58) 17.33 (SD 4.18) Mini-Mental-State-Examination (MMSE) scores MMSE scores Baseline Chlorpromazine (n=13 ) 10.92 (SD 8.87) Haloperidol (n=11) 13.45 (SD 6.95) Lorazepam (n=6 ) 15.17 (SD 5.31)

End of therapy 12.8 (SD 6.4, range 3 to 26) 11.85 (SD 6.74) 11.64 (SD 6.1) 17.0 (SD 4.98)

Day 2 18.31 (SD 10.61) 17.27 (SD 8.87) 12.67 (SD 10.23)

End of therapy 15.08 (SD 10.43) 17.18 (SD 12.12) 11.5 (SD 8.69)
End of therapy 5.08 (SD 4.48) 5.54 (SD 6.76) 12.2 (SD 8.93)

Extrapyramidal Symptom Rating Scale scores ESRS score Baseline Chlorpromazine (n=13) 7.42 (SD 8.08) Haloperidol (n=11) 7.0 (SD 6.8) Lorazepam (n=6 ) 7.6 (SD 10.11)

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

First line treatment Haloperidol

o o o o

IM, IV, or PO** Initial dose0.5-1.0mg IM or IV repeat dose q 30 minutes to titrated to response. Usual maintenance up to 10- 20mg per day. Watch for extrapyramidal reactions, neuroleptic malignant syndrome,and tardive dyskinesia at high doses. Geriatric patients usually started at 25-50%.

Chlorpromazine
o o o

IM, IV, PR, PO** Initial dose25mg 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). 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

2060mg/24h CSCI (up to 240mg reported) ** tolerance develops rapidly 10mg/h IV

Propofol

10mg 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 patients and familys 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 nonexpectorated 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;23:310317.

Management
General Measures Specific Measures

Non-pharmacological
Repositioning the patient on their side or in a semiprone 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 Hyoscine hydrobromide Scopolamine Transderm Patch (Hyosine hydrobromide) Glycopyrronium Glycopyrronium

Stat dose

Dose/24h CIVI/CSCI 1200 2400mcg One 1.5 mg patch CIVI/CSCI 600 1200mcg 200mcg-2mg Q8hrly

Onset

IV/SC 400mcg

35min(IM)

IV/SC 200mcg PO 1mg (oral:iv=35:1)

~12 h (24 h to steady state) 1min(IV) 30min(SC) 30min

Hyoscine butylbromide

IV/SC 20mg

CIVI/CSCI 60300mg CIVI/CSCI 1200 2000mcg Q4hrly

<10min ** Duration of action 12h only 1min

Atropine sulphate Atropine sulphate

IV/SC 400mcg SL 4 drops (1% ophth. soln)

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;23:236671. Cerchietti L et al. Hypodermoclysis for control of dehydration in terminal-stage cancer. International Journal of Palliative Nursing 2000;6:3704. 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
o o o o o o o o Thirst Dry mouth Dysphagia Altered mental state Constipation Postural hypotension aesthenia/ apathy Headache

Signs
poor tissue turgor dry mucous membranes enophthalmos oliguria confusion/somnolence fatigue vascular collapse
Lab Values Raised serum Na, BU,Hb Creatinine, osmolality

o Vomiting o Muscle cramps

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

 Common in palliative care patients esp in terminal stages Due to

o o o o o o Drugs Mouth breathing Nasal O2 Chemotherapy Radiotherapy Candidiasis

Dry mouth and thirst

Thirst and dry mouth may not be related to patients level of hydration and may be unresponsive to artificial hydration

 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

What does evidence show?

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

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

patient be lessened with dehydration?

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 questionwhether 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;2-3:1535 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;64:807814

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;109:740741.

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;11:309325.

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 o o o Terminal phase Advanced bowel obstruction Anorexia- cachexia alone in context of cancer 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

THANK YOU