Dying

Dying is a normal human experience, and while individual circumstances are often unpredictable, there is a reliable deterioration in consciousness and physical function that occurs. Imminent death implies death is likely to occur sometime within the next 24 hours to several days, and is suggested by:

• Noisy breathing or gurgling
  Due to saliva buildup in the throat.
• Altered respiratory pattern, in particular:
  • Apnoeic episodes
  • Hyperpnoea
  • Irregular respirations
• Centralisation of blood volume and mottled extremities
• Increasing weakness
• Increased somnolence, including sleeping for most of the days
• Periods of unconsciousness
• Coma or altered consciousness state
• Cessation of eating or drinking

Dying is the physical and emotional experience of gradually becoming weaker and letting go of the attachment to living.

Management

Priorities in the last days of life should be:

• Maintain the patient’s dignity
• Effective control of discomfort and pain
• Open, honest, and compassionate communication with families
• Collegial communication with other clinicians
  A patients death is often a challenging time for colleagues used to treating patients with curative intent.
• De-prescribing

Therapeutic interventions may be advocated for by families or other clinicians. A useful compromise is a time-limited (e.g. up to 48 hours) trial of a therapeutic intervention, which would be ceased if some threshold of improvement is not met.

Family

Common causes of family concern or distress include:

• Patient not eating or drinking
  Discuss the normal pattern of dying, which includes an absence of thirst or hunger.
• What they should tell the family
  Give them permission. Suggest informing their relative of the patients condition - only that person can make the decision that is right for them, e.g. whether they should come to visit.
• Concern about pain or over-sedation
  Discuss non-verbal markers of pain or distress, such as grimacing, frowning, moaning, or restlesses.

De-Prescribing

Regular medication should be reviewed when patients become unable to safely take oral medication. In general:

• Cease all medications without demonstrable symptomatic benefit
• Be mindful of withdrawal or rebound syndromes
• Reassure patients and families that this is not intended to hasten death, or signify a ↓ in quality of care

De-prescribing in the Last Days of Life

Class	Withdrawal Symptoms	Management of Withdrawal
α-blockers	Rebound hypertension Agitation	Opioid Benzodiazepine
Anticholinergics	Anxiety Headache Dizziness Nausea/vomiting	Opioid Headache. Benzodiazepine Anxiety, dizziness. Antiemetics
Antidepresssants	Dysphoria Agitation Headache	Opioid Benzodiazepine
Anti-reflux	Reflux	PPI
Antiparkinsonian	Rigidity With pain.	Opioid
Antipsychotics	Dyskinesia Nausea Vomiting Agitation	Antipsychotic
Benzodiazepines	Delirium Agitation Insomnia Seizures	Benzodiazepine Generally continuous infusion.
β-blockers	↑ HR Palpitations Angina	Opioid Benzodiazepine Nitrate patch
Digoxin	AF Failure.	Opioid Benzodiazepine
Diuretics	Fluid retention Oedema Dyspnoea	Opioid Benzodiazepine
Nitrates	Angina	Nitrate patch Opioid
Steroids	Adrenal crisis Secondary to HPA suppression. Painful inflammatory condition Re-emergence.	Opioid

Management of withdrawal symptoms should always occur by a parenteral route.

Anticipatory Prescribing

Management of Symptoms in the Last Days of Life

Symptom	Principles	Specifics	Considerations
Pain	Regular analgesia via infusion Breakthrough analgesia Placement of IDC Prevent urinary retention. Discomfort from the IDC is usually minimal. Massage Hot packs Regular turns and pressure area care	Morphine 2.5-5mg Q1H SC Fentanyl 25-50μg Q1H SC Hydromorphone 0.5-1mg Q1H SC	↑ Dose required in opioid-tolerant patient, consider converting regular PO morphine dose to 24 hour CSCI.
Dyspnoea	Position Head up. Supplemental oxygen For symptomatic relief. Consider HFNO. Fan Open a window Opioids Benzodiazepines If anxious. Avoid stacking care	Morphine 1-2mg Q1H SC Fentanyl 25-50μg Q1H SC Hydromorphone 0.5-1mg Q1H SC
Restlessness	Non-pharmacological Soft musing Repositioning Bladder scan Massage	Midazolam 2.5mg Q12H SC Clonazepam 0.25-0.5mg Q12H SC/ Haloperidol 0.5-1mg SC Q2H up to 5mg in 24/24 Levomepromazine 12.5-50mg SC Q1H	Midazolam preferable as clonazepam is at risk of accumulation and oversedation Reserve antipsychotics for symptoms refractory to benzodiazepines Severe distress may require more aggressive therapy See terminal agitation, below.
Gurgling	Regular mouth care Consider anticholinergic	Hyoscine butylbromide 20mg Q2-4H SC up to 120mg in 24/24 Glycopyrrolate 200μg Q4H SC	Cease if ineffective after 3 doses.
Nausea/vomiting	Antiemetics Haloperidol Offer small volumes of food and liquid if still eating It is usual for patients to not feel hungry - this is often distressing for families and they should be reassured that this is a normal part of the dying process. Consider bowel obstruction	Metoclopramide 10mg Q4H SC up to 30mg Haloperidol 0.5-1mg Q4H SC up to 5mg in 24/24 Ondansetron	Ondansetron preferred if risk of EPS or PD.
Bowel/Bladder	Consider IDC Consider laxatives, enema or suppositories
Swallowing difficulties	Sit up Regular mouth care Moistening swabs. Treat oesophagitis Consider corticosteroids
Delirium	De-prescribe Continue hearing aids and glasses Regular circadian rhythm Provide explanation and reassurance Familiarise environment Consider antipsychotics

Anticipatory prescribing is important, and involves ensuring that medications for common symptoms such as breathlessness, pain, nausea and constipation are available for PRN use.

A butterfly needle should be inserted subcutaneously to allow repeated administration of subcutaneous PRN medications.

Regular patient assessments should be performed to titrate therapy.

Continuous Subcutaneous Infusions

If intermittent subcutaneous boluses are required frequently or become ineffective, CSCI medication should be considered. CSCI allows for:

• Continual drug delivery, leading to more stable plasma levels
• Bypass of any limitations to oral agents
  • Inability (or unsafe) swallow
  • Physical UGI obstruction
  • Weakness
  • Obtundation
• Portable medication delivery for ambulant patients
• At-home delivery (with daily nursing attendance to change driver)
• Multiple drugs to be used
  Up to 4 may be used, but 3 is preferable due to risk of precipitation. Compatibility should be reviewed.

Prescribing:

• Diluent
  • Normal saline may ↑ risk of precipitation
    Cyclizine and diamorphine are incompatible.
  • Water may cause pain on injection due to hypotonicity
• Titration
  ↑ By 50-100%, based on PRN use.
• Ensure that doses of breakthrough medicine are appropriate for the concentration in the driver.
• Agents
  Indications include:
  • Analgesia
  • Sedation
    For agitation or terminal restlessness.
  • Nausea

Terminal Agitation

Severe distress may occur at the end of life, which may:

• Manifest as agitation, aggression, or emotional lability
• Be due to physical, psychological, social, or spiritual causes

Assessment should rule out easily reversible precipitants, including:

• Drug withdrawal
  • Alcohol
  • Nicotine
  • Smoking
• Constipation
• Urinary retention
• Paradoxical benzodiazepine reaction

Management of Terminal Agitation

Step	Management
1	Correct reversible causes Midazolam 5mg SC Q1H PRN
2	Midazolam 10-20mg CSCI Midazolam 5-10mg SC Q1H PRN
3	↑ Midazolam CSCI up to 60mg Add 100-300 mg levomepromazine to CSCI Levomepromazine 25-50mg SC Q1H PRN
4	Phenobarbital 50-200mg SC Q1H PRN Add phenobarbital 600-1200mg to CSCI
Note: Consider specialist palliative care involvement after step 2 Phenobarbitone should be run in a separate infusion

Palliative Sedation

Palliative sedation describes the use of proportionate sedation to relieve suffering from intractable symptoms. Palliative sedation is:

• Controversial
• Distinct from euthanasia or assisted dying
• Reserved for refractory or intractable symptoms
  This may include existential distress, but this requires considered decision making.
• Considered in patients in the last period of their life

After Death

After a patient has passed:

• Move the body to a private room if possible
  Sensitively inform the patients room-mates if a single room is unable to be provided.
• Remove medical equipment
• Wash the patient
  If there are no religious or cultural contraindications. Family may wish to assist.
• Change the bedding
• Change the dressings and cover wounds
• Comb the hair
• Close eyes
  Sometimes they must be held shut for a period.
• Expose the hands
• Tidy the bedspace

Allow the family to spend time with the body. Consider:

• Asking them if they have seen someone who has died before
  Discuss the:
  • Change in colour
  • Change in temperature
    Particularly if the body is cold.
  • The
• Offering them the chance to remove jewelery

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References

1. Australian Commission for Safety and Quality in Healthcare. Comprehensive Care Standard End-of-life care: clinical basics. 2024.
2. Lynn J, Adamson DM. Living Well at the End of Life:Adapting Health Care to Serious Chronic Illness in Old Age. RAND Corporation; 2002 Dec [cited 2024 Feb 1].
3. South Australia Health. Medication Cessation for Adults in the Last Days of Life. August 2023.
4. South Australia Health. Prescribing Guidelines for the Pharmacological Management for Adults in the Last Days of Life.. August 2023.
5. Safer Care Victoria. Palliative sedation therapy. August 2024.