Information 1,2

  • Direct exposure to people who are dying is common in Aboriginal and Torres Strait Islander and rural and remote communities
  • Many people, including clinicians, find discussing or caring for someone dying, uncomfortable and confronting
  • Palliative care relies on the wishes and consent of the patient and significant others (includes family, children, next of kin, spouse, carers and friends). See Advance Care Planning
  • The aim for patients who wish to be cared for and die at home is timely recognition and appropriate management to prevent hospital admissions

Support for the rural and remote setting

1. What is palliative care? 1,2

  • The actions that relieve suffering and improve the quality of life of a patient with a life-limiting illness and their family
  • A patient receiving palliative care can be viewed as someone being close to dying, however it also supports those not imminently dying

Table 1. General principles of palliative care 2

  • Regards dying as a normal process
  • Neither hastens nor postpones death
  • Optimises the quality of remaining life
  • Respects a patients psychological and spiritual needs
  • Supports patients to live as actively as possible until death
  • Supports a patients family in their own bereavement
  • Positively influences the course of life-limiting illnesses
  • Respects the wishes of the patient
  • Reduces physical suffering and emotional distress
  • Minimises the impact of the progressing illness
  • Maximises patient function, symptom relief and comfort
  • Tailors and adapts interventions to the changing needs of the patient and their family as death approaches
  • Provides relief from pain and other distressing symptoms

2. Determining when palliative care begins 2

  • Begins once someone is diagnosed with a life-limiting illness
  • Some patients may be in good health for years before deteriorating and will still benefit from care, especially emotional support
  • Not all patients want palliative intervention, however it should be offered and provided to significant others

3. Management of those receiving palliative care 1–3

  • Palliative care relies on the partnership between the patient, significant others, a multidisciplinary team and the Palliative Care Team. See Resources 1–4.
  1. Social-emotional support for patient and significant others 1–4
    • Acknowledging the patients life-limiting illness openly and sensitively can provide validation and relief for the patient and family. This includes:
      • clarifying the progression of the illness and the patient’s death
      • the prospect of a 3.22 catastrophic terminal event and what it entails
      • a change in personality or delirium close to dying
      • loss, bereavement and distress. Consider referral to psychologist, social worker, Palliative Care Service, counsellor or spiritual leader
      • listening and responding to worries and fears
      • using clear language. Avoiding jargon e.g. life-limiting illness vs cancer
      • allowing and listening to the patient and family speak or reminisce
    • Be mindful that for many Aboriginal and Torres Strait Islander people, those from non-English speaking backgrounds and refugees:
      • certain family members will assume cultural leadership roles
      • English is often their second or third language
      • may be reluctant to acknowledge “bad news”
      • time is needed to discuss “bad news” to get understanding for all involved
      • cultural and spiritual beliefs about death and dying may conflict with Western explanations
      • the term ‘passing’ is more accepted when discussing death or dying due to spiritual beliefs around the life cycle
    • Provide Resources 5. See Engaging our patients
  2. Respecting the patient’s wishes and concerns 1,2
    • Nothing is undertaken without the consent of a lucid patient
    • Ensure Advance Care Planning documents outline a patients last wishes, choices and medical interventions. They can:
      • be kept in the patients home to guide family and clinicians
      • include an Acute Resuscitation Plan to guide resuscitation management
      • be viewed, updated or altered via The Viewer using the ACP Tracker App
      • be enacted at a time when the patient does not have capacity to state their wishes or appropriate care. See Resource 6.
  3. Talking to children 1,2
    • Adults sometimes believe that children need emotional protection and withhold the truth behind a loved one dying, which can cause fears of imagined events or not being able to grieve
    • The following may be useful to families when talking with children:
      • follow the child’s lead
      • provide truthful information about what is happening in an age-appropriate manner (generally concepts of death develops between 6–8 years)
      • allow questions to be asked, share their emotions, feelings and thoughts. Children might express their sadness with behaviours rather than words
      • provide clear, honest answers
      • acknowledge and validate their emotions. Family can normalise grief by sharing their own feelings
      • include them in visits, gatherings and the funeral
      • advise the school of the child’s loss
    • Refer to a social worker to provide detailed child communication and counselling support
  4. Establish clear goals and boundaries 1–3
    • The patient, family, substitute decision-maker(s) and the clinical team are essential decision-making participants for end-of-life care
    • Frequent group meetings ensures everyone has a clear understanding of the purpose and goals of any intervention
  5. Home supports 2
    • Refer to physiotherapist to advise on patient mobility aids e.g. walking aids
    • Refer to occupational therapist to advise on equipment and home modifications to aid safer activities of daily living for patients e.g. bathroom rails
    • Allied health can educate on safe manual handling
  6. Psychosocial, spiritual and cultural support 1,2
    • If they wish, listen to and allow the patient and family to:
      • say goodbye to people and places
      • forgive and be forgiven
      • express joy and gratitude
      • face regrets and accept death
      • share memories
      • request someone sit with them
      • access spiritual and cultural support
      • undertake cultural customs and practices
      • ask questions
    • Being at the bedside can be a sign of support and caring
    • Use respectful verbal and non-verbal communication. Use touch if appropriate
    • Complex issues may require referral to a psychologist, social worker, counsellor or a local spiritual leader
  7. Preparing for the last days of life 1,4
    • Review and discuss the patient’s wishes and care using Advance Care Planning if completed
    • Document a Care Plan (Resource 4.) including where the patient would like to die and the support required. If at home consider:
      • sufficient people are available and able to provide care (Table 2.), ensuring the primary carer has adequate sleep and breaks
      • understanding 3.9 Recognising deterioration and the dying phase
      • supportive care equipment is available at the bed head and tested daily. Include:
        • large combines
        • IV cannulation pack. Maintain IV patency
        • large bowl and wipes
        • incontinence pads
        • clinical waste bags
        • towels (ideally dark)
        • spare tracheostomy tube & 10 mL syringes if required
      • what to do and who to contact when the patient dies (check local protocols)
      • after hours and ongoing health service contacts
    • Ensure patient and significant others understand the possibility of 3.10 Catastrophic terminal events
    • The MO/NP will prescribe and review crisis medicines and educate significant others about their storage and use. Refer to the pharmacist for clarity or advice. See Resource 7.
    • Considerations for Aboriginal and Torres Strait Islander families:
      • there may be large gatherings of immediate and extended family and friends as a mark of respect for the patient
      • consider flexible health centre visiting hours
      • interstate visitors and limited accommodation
      • family members may want to stay overnight with patient
  8. Care of the dying patient
    • See Table 2.

Table 2. Care of the actively dying patient 1,2

State

Actions

Pain

  • Reposition, pressure-relieving aids, hot or cold packs
  • Consider 4. Medicines

Restlessness and agitation

  • Assess for reversible causes e.g. pain, dehydration, fever, breathlessness, urinary retention, faecal impaction
  • Reposition, minimise noise, room temperature, family touch
  • Consider 4. Medicines

Nausea and vomiting

  • Consider 4. Medicines

Respiratory secretions

  • Reposition into a semi-prone position
  • Consider 4. Medicines

Breathlessness

  • Reposition or use fan
  • Consider low dose opioids. See 4. Medicines

Fever

  • Cool sponges and use of fans
  • Consider antipyretics orally or rectally

Food and fluids

  • Support to eat and drink for as long as tolerated
  • Consider thickened fluids
  • Monitor fluid intake and provide < 1 litre/day to minimise oedema
  • Monitor for aspiration and distress
  • If on IV hydration monitor for overload and patient distress

Skin care

  • Assess frequently for rashes, skin breaks, discolouration, irritations or pressure injuries
  • Reposition, skin lotions, pressure mattresses, frequent linen changes for hygiene and continence care and wound care

Mouth care

  • Assess frequently to ensure mouth is clean and moist
  • Use toothpaste, foam swabs, suction, chlorhexidine 0.2% mouth wash, oral moisture agents, anti-fungal drops, sterile water, lip lubricants, ice

Eye care

  • Keep clean and moist by swabbing with saline or warm water

Bladder care

  • Protect dignity, hygiene and skin integrity using pads, urinary catheters or penile sheaths
  • If no urine output for > 8 hours consider bladder scan

Bowel care

  • Monitor for constipation or diarrhoea
  • Maintain dietary intake. Offer frequent smaller servings
  • Consider laxatives or anti-diarrhoeal agents

Environment

  • Provide a comfortable environment according to patients wishes
  • Consider a single room, curtains and screens, space at the bedside, fragrances, silence or music, lighting, pictures and photographs
  1. Recognising deterioration and the dying phase 1
    • A period of deterioration lasting a few hours or days usually precedes death, characterised by:
      • accelerated illness progression e.g. increased weight loss, worsening symptoms
      • progressive fatigue and loss of strength
      • longer periods of sleeping, totally bed-bound and requiring 24 hour care
      • loss of interest in food, decreased fluid intake or unable to swallow
      • confusion, delirium or mood change
      • minimal response to verbal or physical stimuli, unconsciousness but likely to hear what is happening around them
      • reduced or absent urine output
      • Cheyne-Stokes breathing pattern e.g. slow, irregular, ‘rattling’, starts and stops
      • peripheral shutdown e.g. skin pale, mottled, cold, cyanosed (in last few hours)
    • Encourage significant others to communicate at this time with speech and touch
    • Always be guided by Advance Care Planning documents. See Resource 6.
    • Consider deactivating implanted cardioverter defibrillators (ICDs). See Resource 8
  2. Catastrophic terminal event 4,5
    • Can be unpredictable, confronting and traumatic to witness
    • Death occurs within minutes from massive haemorrhage or airway obstruction
    • Occurs mostly with advanced cancer disorders, including:
      • head, neck or haematological cancer
      • cancers close to major arteries or bleeding disorders
      • bone marrow failure (platelets < 15)
      • wound infection, poor healing or recent radiotherapy at tumour site
    • During the event, at least one clinician remains with the patient and significant others to provide supportive measures to minimise the discomfort and distress of the patient, by:
      • a calm and reassuring presence (priority)
      • using supportive care equipment to facilitate patient comfort (priority)
      • administer crisis medicines. See Table 2.
  3. Time of and after patient has died 1–3
    • Always seek direction from the Aboriginal and Torres Strait Islander Health Worker or family
    • Considerations for clinicians in rural and remote locations:
      • loud mourning may occur when the patient dies
      • family may wish to wash and lay out the deceased with or without the health staff. Family may not want staff to be present during cultural duties
      • family may need to have the deceased at home for some time. Turn air conditioner on high and position deceased flat in bed with arms straight by side
      • liaise with the family a time to transfer the body to the clinic/hospital morgue
      • it is culturally inappropriate for non-Indigenous health staff to inform community members or significant others of a patient’s death; this is the role of family members
      • in some Aboriginal and Torres Strait Islander communities it causes great offence to mention, write, show or broadcast the name, image or voice of a deceased person without permission
      • community services and businesses may shut
      • a smoking ceremony may be conducted by a spiritual leader of the deceased patient’s belongings, their room or home; this may include the health facility
    • Ensure everyone is offered support and counselling, including clinical staff
  4. Clinical staff responsibilities after patient dies 1,2,4
    • The death of a patient can be lawfully verified and a Life Extinct form (Resource 1 or 9.) completed by Medical Practitioner, Registered Nurse, Paramedic or Police Officer. A physical assessment confirms a person is deceased by:
      • no palpable carotid pulse
      • no heart sounds for 30 seconds
      • no breath sounds for 30 seconds
      • fixed dilated pupils
      • no response to centralised stimuli
      • no motor (withdrawal) response or facial grimace response to painful stimuli
    • A medical officer must complete a Cause of death medical certificate within 2 days of a death. See Resource 10.
    • Discuss any post-mortem investigation or coronial inquest results with family
  5. Voluntary Assisted Dying (VAD) 7
    • In Queensland, VAD is an option for patients who meet the following criteria:
      • have an illness or medical condition that is:
        • advanced, progressive and will cause death
        • expected to cause death within 12 months
        • causing suffering considered by the patient to be intolerable
      • have decision-making capacity, that is:
        • understand the nature and effect of decisions about access to VAD
        • freely and voluntarily make decisions about access to VAD
        • communicate decisions about access to VAD in some way
      • be making the decision voluntarily and without coercion
      • be aged 18 years or older
      • meet residency and citizenship requirements:
        • all steps must occur in Queensland for the protections under the Act to apply
    • If a clinician believes a patient meets the above criteria refer to QVAD-Support for further clarity. See Resource 11.
    • Clinicians who conscientiously object to participating in VAD are legally obliged to:
      • refer a patient requesting information to a VAD practitioner or QVAD-support
      • not obstruct a patient from accessing VAD information or services
      • not coerce a patient for or against VAD

4. Medicines for palliative care 1,2,9,10

  • Support cultural practices that involve using traditional medicines
  • Review medicines used to manage comorbidities as the life-limiting illness progresses, while minimising any burdens or harms:
    • alter administration to the least invasive route e.g. subcut vs orally
    • anticipate medicines required at home for common symptoms e.g. pain, respiratory secretions and agitation
  • Should an authorised prescriber elect to initiate medicinal cannabis, exhaust standard palliative treatments first. See Resource 12.
  • As the patient’s condition deteriorates in the last days to weeks of life, consider withdrawing medicines unrequired for symptom relief
  • Seek specialist palliative care advice from PallConsult (Resource 1.) if:
    • > 3 medicines are required in the same infusion
    • symptom management is problematic despite optimal medicine doses
    • patient is not responding to opioid therapy after > 3 consecutive hourly doses or > 6 doses in a 24 hour period
  • See Resource 7. for further palliative care medicines use
  • For non-pharmacological, non-opioid or adjuvant analgesics for palliative care, see Persistent pain

Table 3. Medicine management of symptoms in the dying patient 4,7,8,10

Crisis medicines administration

  • Midazolam is preferred for catastrophic haemorrhage. Individualise to benzodiazepine tolerance, the elderly, frail or low weight
  • Morphine can help with airway obstruction discomfort; not usually indicated for haemorrhage alone unless the episode is prolonged or associated with pain or dyspnoea
  • Midazolam 10 mg subcut or 10 mg IV, repeated after 15 mins. if necessary
  • Morphine 10 mg subcut or 5 mg IV, repeated after 15 mins. if necessary

Agitation and restlessness (initial)

  • Adjust as needed. Review response after 3 doses

In patients not taking benzodiazepines:

  • Clonazepam 0.2 to 0.5mg subling or subcut, 2-hrly prn (to max. 4 mg/24 hours) OR
  • Midazolam 2.5mg subcut, 1-hrly prn (to max. 60 mg/24 hours) OR

In patients not taking anti-emetics, haloperidol or another antipsychotic:

  • Haloperidol 0.5–1 mg subcut, 4-hrly prn (to max. 5 mg/24 hours)

Agitation and restlessness (ongoing)

  • For ongoing agitation or > 3 doses above are required in 24 hours
  • Clonazepam (to max. 4 mg/24 hours)
    • 0.2–0.5 mg subling or subcut, 12-hrly, and 0.2–0.5 mg 2-hrly prn OR
    • 0.5–1 mg/24 hours continuous subcut infusion, and 0.2–0.5 mg subling or subcut, 2-hrly prn OR
  • Haloperidol (to max. 5 mg/24 hours)
    • 0.5–1 mg subcut, 12-hrly prn and 0.5–1 mg 4-hrly prn OR
    • 1–2.5 mg/24 hours continuous subcut infusion, and 0.5–1 mg subcut 4-hrly prn OR
  • Midazolam 10–20 mg/24 hours continuous subcut infusion, and 2.5 mg subcut 1-hrly prn (to max. 60 mg/24 hours)

Pain (initial)

  • Lower starting dose for older or frail patients and higher for younger or larger patients

In patients not taking opioids:

  • Fentanyl 25–50 microgs subcut, 1-hrly prn OR
  • Morphine 2.5–5 mg subcut, 1-hrly prn OR
  • HYDROmorphone (ALERT: Not morphine) 0.5–1 mg subcut, 1-hrly prn

Pain (ongoing)

  • If patient requires > 3 doses above in 24 hours
  • Monitor response and adjust dose and frequency as needed
  • Review if patient requires > 3 consecutive doses or > 6 doses in 24 hours

In patients not taking opioids:

  • Fentanyl 150–225 microgs/24 hours continuous subcut infusion, and 25–50 microgs, 1-hrly prn for breakthrough pain OR
  • Morphine
    • 2.5–5 mg subcut, 4-hrly and 2.5–5 mg subcut, 1-hrly prn for breakthrough pain OR
    • 10–15 mg/24 hrs continuous subcut infusion, and 2.5–5 mg subcut, 1-hrly prn for breakthrough pain OR
  • HYDROmorphone (ALERT: Not morphine)
    • 0.5–1 mg subcut, 4–hrly prn and 0.5–1 mg subcut, 1-hrly prn for breakthrough pain OR
    • 2–3 mg/24 hours continuous subcut infusion, and 0.5–1 mg subcut 1-hrly prn for breakthrough pain

Distressing breathlessness (initial)

If not taking benzodiazepine:

  • Clonazepam 0.2 to 0.5mg subling or subcut, 2-hrly prn (to max. 4 mg/24 hours) OR
  • Midazolam 2.5mg subcut, 1-hrly prn (to max. 60 mg/24 hours) OR

If not taking opioids:

  • Fentanyl 25–50 microgs subcut, 1-hrly prn
  • Morphine 1–2.5 mg subcut, 1-hrly prn
  • HYDROmorphone (ALERT: Not morphine) 0.25–0.5 mg subcut, 1-hrly prn

Distressing breathlessness (ongoing)

  • For ongoing distressing breathlessness or if > 3 doses above are required in 24 hours
  • Monitor response and adjust dose as needed
  • Clonazepam (to max. 4 mg/24 hours)
    • 0.2–0.5 mg subling or subcut, 12-hrly prn and 0.2–0.5 mg subling or subcut, 2-hrly prn
    • 0.5–1 mg/ 24 hours continuous subcut infusion and 0.2–0.5 mg subling or subcut, 2-hrly prn OR
  • Midazolam 10–20 mg/24 hours continuous subcut infusion, and 2.5 mg subcut hrly prn (to max. 60 mg/24 hours)

If not taking morphine:

  • Fentanyl  75–150 microgs/24 hrs by continuous subcut infusion and 25–50 microgs, hrly prn for breakthrough pain OR
  • Morphine
    • 1–2.5 mg subcut, 4-hrly, and 1–2.5 mg subcut, 1-hrly prn OR
    • 5–10 mg/24 hours continuous subcut infusion, and 1–2.5 mg subcut, 1-hrly prn OR
  • HYDROmorphone (ALERT: Not morphine)
    • 0.25–0.5 mg subcut, 4–hrly prn, and 0.25–0.5 mg subcut, 1-hrly prn for breakthrough pain OR
    • 1–2 mg/24 hours continuous subcut infusion, and 0.25–0.5 mg subcut, 1-hrly prn for breakthrough pain

Nausea and vomiting (initial)

  • Do not use metoclopramide with bowel obstruction
  • Monitor response and adjust dose as needed

In patients not taking antiemetics:

  • Metoclopramide 10 mg subcut, 8-hrly prn (to max. 30 mg/24 hours) OR

In patients not taking anti-emetics, haloperidol or another antipsychotic:

  • Haloperidol 0.5–1 mg subcut, 4-hrly prn (to max. 5 mg/24 hours)

Nausea and vomiting (ongoing)

  • For ongoing nausea or vomiting or > 3 doses above are required in 24 hours

Metoclopramide (to max. 30 mg/24 hours)

  • 10 mg subcut, 8 hrly, and 10 mg, 4-hrly prn OR
  • 30 mg/24 hours continuous subcut infusion, and 10 mg subcut, 4-hrly prn OR

Haloperidol (to max. 5 mg/24 hours)

  • 0.5–1 mg subcut, 12-hrly, and 0.5–1 mg 4-hrly prn OR
  • 1–2.5 mg/24 hours continuous subcut infusion, and 0.5–1 mg subcut, 4-hrly prn

Respiratory tract secretions (initial)

  • Cease after 12–24 hours if no improvement or drug causes unwanted adverse effects
  • Monitor response and adjust dose as needed

Hyoscine butylbromide 20 mg subcut, 2-hrly prn (to max. 120 mg in 24 hours)

Respiratory tract secretions (ongoing)

  • Consider regular therapy if the patient has responded to above

Hyoscine butylbromide (to max. 120 mg/24 hours)

  • 20 mg subcut, 4-hrly OR
  • 60–80 mg/24 hours (initially) continuous subcut infusion, increasing as necessary

Seizure

  • For non self-limiting seizure

Clonazepam 1 mg IV, subling or subcut, every 10 mins prn (to max. 4 mg/24 hours) OR

Midazolam 5–10 mg IM, every 10 mins prn OR 5 mg IV, every 10 mins prn OR 10 mg subcut, every 10 mins prn (to max. 20 mg/24 hours)

Multifocal myoclonus (twitching or jerking of muscles)

  • Associated with opioid use
  • Can be use for 2–3 days until reduced opioid dose improves symptoms

Clonazepam 0.5–1 mg PO, subling or subcut, once a day or bd (to max. 4 mg/24 hours)

Midazolam 2.5–5 mg subcut as a single dose OR 5–10 mg/24 hours continuous subcut infusion (to a max. 20 mg/24 hours prn)

5. Cycle of care

Cycle of care summary for those receiving palliative care

Action

Dx

Review frequency

Patient and significant other dying process education, preparation, crisis medication education, SEWB

Assess at each visit or contact

Pain

Restlessness and agitation (delirium)

Distress related to respiratory secretions

Nausea and vomiting

Distress related to breathlessness

Urinary output

Bowels

Comfort and safety

Fluids

Moist and clean mouth

Skin integrity

Patient hygiene

Psychological and spiritual wellbeing

Medicine review

6. References

7. Resources

  1. PallConsult: Support for rural and remote clinicians delivering end-of-life care
  2. Palliative care resources for care of Aboriginal and Torres Strait Islander people
  3. Queensland Palliative Care resources for clinicians
  4. Care Plan for the Dying Patient: Health professional guidelines
  5. Palliative Care Australia resources for patients, carers and health professionals
  6. ACP Tracker 
  7. PallConsult palliative care medicines in the home support
  8. Heart Failure: End-stage management guideline
  9. Life extinct form or at PallConsult
  10. Cause of death medical certificates
  11. Queensland Health Voluntary assisted dying explained or Queensland voluntary assisted dying support service (QVAD-Support) Ph. 1800 431 371
  12. Therapeutic Goods Administration Medicinal cannabis hub

Last updated: September 2024

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