1. End of Life Care

2. Aged care end of life issues
When does the end of life begin?
Where should the end of life occur?
What is best practice end of life care?
What is needed to support this?
Key End of Life Issues for Aged Care Providers
It is accepted that the end of life is a common part of residential aged care.
The key issues to consider are these
When does the End of Life begin? For some conditions such as cancer the process of dying is a progressive one, with the last weeks to days of life reasonably clear.
For other conditions, especially advanced dementia, the end of life period can seem extended and less clear.
Some clinical indicators can help in confirming the change to the end of life phase.
In a broader sense, all residents in high care are in the last phase of life, and average length of stay is decreasing over time.
Where should the End of Life occur? Where possible the resident should nominate their preferred place of care. End of life care is able to be delivered in high care facilities, and low care if resources and support is available.
Admission to hospital to die is an undesirable outcome.
What is best practice End of Life Care? Recent work in the UK has helped to describe the elements of best practice end of life care. Planning ahead, and focussing on comfort care with good symptom management is essential
What is needed to support this?
Quality end of life care requires GP support, ongoing assessment, rapid response to problems, and discussion with a specialist palliative care team when required.

3. Pain management in end of life care
Pain is a symptom that can occur in the last days of life
Where pain is a pre-existing symptom, measures should be in place to ensure continued effective management during the end of life
If pain is not a present problem, an intermittent (PRN) analgesic is ordered in anticipation of pain presenting.
Pain has been identified as a common symptom in the end of life period.
If pain has been a known symptom before the last days of life, ask the following:
Is there a current regular analgesic ordered?
If yes - is it effective?
If yes, continue if possible, or convert to subcutaneous
Add intermittent order (PRN) for breakthrough episodes of pain.
As pain has been identified as a symptom that may reasonably occur during the last days of life, then a PRN order of analgesia (for subcutaneous administration) is a recommended practice.
Morphine sulphate is a suggested opioid analgesic in end of life care.

4. Care context The end of life goal is that the individual be pain free
Regular assessment is needed
When pain is assessed, ordered analgesia is administered, and effectiveness determined
Episodes of pain and its management are documented
Regular assessment is needed to ensure pain, if present, is managed.
The use of a non-verbal pain tool may aid assessment in the last days of life.
Care staff need to agree on what behaviours are related to pain, and give analgesia when these are observed.

5. Analgesia considerations
If more than 3 PRN doses are given in a 24-hour period:
regular subcutaneous administration 4 hourly or a continuous subcutaneous infusion via syringe driver may be considered.
if already on regular administration the dosage should be reviewed
the PRN order is reviewed in line with alterations to regular doses
Multiple PRN doses in a 24 hour period suggest that pain is not under control.
Move to regular (by the clock) administration if not already in place
Dosage may need review
If regular dosage is altered then PRN is changed also

6. Other pain management issues
Keep the individual and/or their primary carer informed about the care strategy
Ensure that PRN medications are given in response to pain, or in anticipation of incident pain (eg, on moving)
Ensure that the attending doctor is informed of any inadequacies in the pain management strategy
In the last days of life pain assessment will rely on non-verbal cues for most residents.
The use of a pain assessment tool such as PAINAD or Abbey etc will assist in consistency of assessment.
Care staff need to discuss distress related behaviours and agree on which are pain related.
Analgesia is for pain, other medications are for anxiety / restlessness etc.

7. Other pain issues (2)
Remember that any pain experience can be amplified by psychological and spiritual distress
Maintaining general comfort measures will contribute to the overall management of pain
For residents who are conscious and aware, psychological or spiritual issues can impact on the individual’s pain experience.

8. Review
If the prescribed medications are ineffective a medical review is indicated.
Escalating doses of opioids are not commonly seen in the last days of life, and should be regarded as an indication for urgent medical review
Consult with the specialist palliative care service if indicated

9. Negative Vocalisation
Pain assessment in advanced dementia (PAINAD) (Central Coast Adaptation) 1 2
Breathing
Independent of vocalisation
Normal
Occasional laboured breathing.
Short period of hyperventilation
Noisy laboured breathing.
Long period of hyperventilation.
Negative Vocalisation
None
Occasional moan or groan.
Low level speech with a negative or disapproving quality
Repeated troubled calling out.
Loud moaning or groaning.
Crying
Facial expression
Smiling, or
inexpressive
Sad. Frightened. Frown
Facial grimacing
Body Language
Relaxed
Tense.
Distressed pacing. Fidgeting
Rigid. Fists clenched,
Knees pulled up.
Pulling or pushing away. Striking out
Consolability
No need to console
Distracted or reassured by voice or touch
Unable to console, distract or reassure
Example of the Pain Assessment In Advanced Dementia tool (modified).

10. Bibliography
Anderson SL. & Shreve ST Continuous subcutaneous infusion of opiates at end-of-life. Annals of Pharmacotherapy. 38(6):
Ellershaw J, Wilkinson S Care of the Dying: A pathway to excellence.
Nauck F, Klaschick E, Ostgathe C Symptom Control in the Last Three Days of Life. European Journal of Palliative Care 7(3):
Regnard C, Hockley, J A Guide to Symptom Relief in Palliative Care
Twycross R, Wilcock A Symptom Management in Advanced Cancer
Wrede-Seaman LD Treatment options to manage pain at the end of life. American Journal of Hospice and Palliative Care 18(2): , 144

11. Nausea / vomiting in end of life care
Nausea is a symptom that may occur in the last days of life
The causes of nausea / vomiting in the dying vary across diseases
Nausea and vomiting is a less common symptom in the end of life but does sometime present.
There are several distinct mechanisms that result in nausea / vomiting. Selecting the antiemetic that best matches the particular mechanism (if known) may provide improved control.
Where the mechanism is unclear, a broad anti-emetic may be be selected.

12. Medication
If nausea / vomiting has been an ongoing symptom prior to the last days of life then a regular anti-emetic is ordered together with PRN (as required) doses.
If nausea / vomiting is not a present symptom, then an intermittent (PRN) anti-emetic is ordered in anticipation of nausea / vomiting presenting.
Effective management strategies are continued for an ongoing problem.
A PRN medication order is recommended if not a current problem, in anticipation of possible presentation.
Haloperidol is a suggested anti-emetic for end of life care, unless contraindicated.

13. Care context
The pathway goal is that the individual has no episodes of nausea / vomiting
Nausea / vomiting is assessed regularly
When an episode of nausea / vomiting occurs, the ordered anti-emetic is administered, and effectiveness determined
Each episode is recorded in the progress notes

14. Review
If the prescribed medications are ineffective a medical review is indicated.
Consult with the specialist palliative care service if indicated

15. Bibliography
Haughney A Nausea & vomiting in end-stage cancer. American Journal of Nursing 104(11):40-8
Regnard C, Hockley J A Guide to Symptom Relief in Palliative Care
Woodruff, R Palliative Medicine
Cherny NI Taking care of the terminally ill cancer patient: management of gastrointestinal symptoms in patients with advanced cancer. Annals of Oncology 15(Suppl 4):iv205-13

16. Respiratory problems in end of life care
Two respiratory symptoms that can occur during the dying process are excessive respiratory secretions and dyspnoea.

17. Respiratory secretions
If excessive respiratory secretions are not a present symptom, an intermittent (PRN) antimuscarinic agent is ordered in anticipation of this symptom occurring.
Hyoscine hydrobromide is a suggested medication, unless contraindicated.
Repositioning can be effective in managing secretions.
Suctioning is not usually used.
Note that the use of hyoscine or other agents will not have an effect on existing secretions. For this reason it is advisable to commence an antimuscarinic at the first signs of secretion accumulation.
Hyoscine is not used for conscious persons.

18. Respiratory secretions
The noise associated with respiratory secretions can be a source of distress for carers, and additional explanation and reassurance may be indicated.
In conscious patients glycopyrrolate (Robinal) or hyoscine butylbromide (Buscopan) may be preferred.

19. Respiratory distress
Respiratory distress is managed in response to the underlying cause.
Morphine (subcutaneous injection) has been shown to reduce dyspnoea without significant respiratory depression
Anxiolytics (benzodiazepines) may reduce dyspnoea, especially where anxiety/ fear is a contributing factor.
Oxygen may relieve the dyspnoea associated with hypoxia
Dyspnoea may be a pre-existing problem. It is rarely a new problem in the last days of life.

20. Care context
The care goal is that the individual has no episodes of respiratory distress or excessive respiratory secretions.
Respiratory symptoms are assessed regularly.
When an episode occurs, the ordered medication (or intervention) is administered, and effectiveness determined.
Episodes are documented in the progress notes.

21. Review
If the prescribed medications are ineffective a medical review is indicated.
Consult with the specialist palliative care service if indicated

22. Bibliography
Furst CJ, Doyle D The Terminal Phase, in Doyle et al Oxford Textbook of Palliative Medicine (3rd Ed)
Jennings AL, Davies AN, Higgins JPT, Broadley K Opioids for the palliation of breathlessness in terminal illness. The Cochrane Database of Systematic Reviews, Issue 3. Art. No.: CD DOI: / CD002066
O'Donnell V Symptom management. The pharmacological management of respiratory tract secretions. International Journal of Palliative Nursing 4(4):
Wildiers H, Menten J Death rattle: prevalence, prevention and treatment. Journal of Pain and Symptom Management 23(4): 310-7

23. Agitation / anxiety / restlessness in end of life care
Agitation / anxiety / restlessness are a group of symptoms that may occur in the last days of life
The possible causes of agitation / anxiety / restlessness in the dying are many, and the exact cause will be evident in about 50% of cases.
Anxiety is a symptom found in conscious and aware residents.
Distinguishing agitation and/or restlessness from delirium requires clinical skill.

24. Agitation / anxiety / restlessness
Possible causes of agitation / anxiety / restlessness include:
physical discomforts (eg. pain, full bladder, pressure areas)
anxiety and existential distress
drug toxicity, hypoxia
metabolic imbalance
Where a clearly reversible cause is identified, intervention to reverse the cause is appropriate
To find a reversible cause is to minimise the use of medications.

25. Agitation / anxiety / restlessness
If agitation / anxiety / restlessness is not a present problem, an intermittent (PRN) anxiolytic is ordered in anticipation of agitation / anxiety / restlessness presenting during the end of life period
Midazolam is a suggested medication in end of life care.

26. Agitation / anxiety / restlessness
If more than 3 PRN doses are given in a 24-hour period a more regular administration should be considered.
Alternatively the substitution of a regularly administered long acting benzodiazepine (eg Clonazepam) may be appropriate.

27. Care context
The care goal is that the individual has no episodes of agitation or restlessness
Agitation / anxiety / restlessness is assessed regularly
When an episode of agitation / anxiety / restlessness occurs, the appropriate nursing intervention or medication is administered, and effectiveness determined.
Each episode is recorded in the progress notes

28. Review
If the prescribed medications are ineffective a medical review is indicated.
Consult with the specialist palliative care service if indicated.
Occasionally agitation may be refractory to standard drug treatment.

29. Bibliography
Brajtman S The impact on the family of terminal restlessness and its management. Palliative Medicine 17(5):
Ellershaw J. Wilkinson S Care of the Dying: A pathway to excellence
Regnard C, Hockley J A Guide to Symptom Relief in Palliative Care
Twycross R, Wilcock A Symptom Management in Advanced Cancer
Travis S, Conway J Terminal Restlessness in the Nursing Facility, Geriatric Nursing 22(6):

30. Maintaining comfort in end of life care
Providing comfort focused care is central to quality end of life care
Maintaining comfort is the primary role of all staff attending a resident in the last days of life.
Aged care staff are experts in providing comfort care.
In end of life care this becomes the focus of care.
Some routine approaches to care require reconsideration in the end of life context

31. Care context
A number of comfort measures are considered in end of life care. These include:
The need for a pressure relieving mattress
The need for a single room (if an option)
Key comfort care areas are
Positioning Mouth care
Eye care Skin care
Micturition Bowel care

32. Mouth care
The care goal is that the mouth and lips be clean and moist.
Mouth care is reviewed regularly.
Moist oral mucous membranes will tend to prevent thirst.
Local protocols for cleaning mouth and dentures are used.
Avoid alcohol based agents as these can exacerbation “dryness”

33. Positioning
The care goal is that a comfortable position be maintained. Frequency of repositioning is reviewed regularly.
Comfort should take priority over pressure relieving interventions that cause distress.
Use individual’s“preferred” position as often as reasonable.
Use PRN analgesia in advance of repositioning when indicated
Distress resulting from repositioning may be pain related, anxiety related, or combination.
If pain, then it is best managed as incident pain. This means the administration of prescribed PRN analgesia at a suitable time before re-positioning.

34. Eye care The care goal is that eyes are clean and moist
Eye toilets following local practice are used
Eye lubrication is indicated if eye is dry
Examples of products include Liquid Tears, Viscotears gel, normal saline

35. Skin care The care goal is that skin is clean and moist
Avoid products that dry or harm skin
The need for pressure area care should be balanced against the need for comfort
Wounds should be managed in the least invasive way (no time to heal)
If incontinent ensure skin protection products are used
The use of pressure relieving mattresses (where available) reduce the need for repositioning.
Protective – long term dressings may be indicated for any existing wounds.

36. Micturition
Care goal is that the individual be dry and comfortable. Urinary aids such as pads should be used if resident is incontinent
Urinary output is reduced during the last days of life
Urinary retention should be excluded if individual becomes restless
Catheterisation is only used when it will improve overall comfort
Generally urine output reduces dramatically at the end of life due to reduced fluid intake and reduced renal function.
Even if retention is assessed indwelling catheters are usually avoided.

37. Bowel care
The care goal is that the individual is not agitated or distressed by constipation or diarrhoea.
Optimal bowel care prior to the last days of life, especially in the presence of regular opioids, contributes to overall comfort.
As food intake is reduced or non existent in the last days of life, bowel product is much reduced.

38. Bowel care
Bowel products lessen in quantity as the end of life approaches
Once oral medications are not possible, in the last days of life, other bowel management agents are not usually used unless to reverse an identified problem.
A full rectum should be excluded if the individual becomes restless (use suppositories).

39. Bibliography
Glare P, Dickman A, Goodman M Symptom Control in Care of the Dying, in Care of the Dying: A pathway to excellence
O’Connor M, Aranda S. (Eds) Palliative Care Nursing: A Guide to Practice
Wright K Caring for the terminally ill: the district nurse's perspective. British Journal of Nursing 11(18):

40. Spiritual / religious / cultural issues in end of life care
Understandings, expectations and practices relating to dying and death vary for each individual
Quality end of life care needs to address what, if any, spiritual, religious or cultural factors are important for each individual and their immediate family during this time
Identified needs are to be recorded and planned for wherever possible
In end of life care the accurate identification and clear documentation of spiritual / religious / cultural requirements for each resident is the primary point.
The secondary point is the facilitation / observation of these expectations.

41. Spiritual / religious / cultural care
Relevant rituals / processes may apply
Pre death
At the time of death
Post death
Identifying these and facilitating their adherence will support the individual and their family

42. Spiritual / religious / cultural care
Take an individual approach. Avoid assumptions and stereotyping.
If indicated, facilitate the practice of identified rituals and provision of support.
Utilise family contacts / resources.
Negotiate the introduction of other pastoral resources if indicated.
Exercise cultural awareness and make use of available resources.

43. Bibliography
Hopper A Spiritual care. Meeting the spiritual needs of patients through holistic practice. European Journal of Palliative Care 7(2): 60-2.
Neuberger J Caring for Dying People of Different Faiths (3rd Ed)
Speck, P Spiritual / Religious Issues in Care of the Dying, in Care of the Dying: A Pathway to Excellence
Stanworth R Recognising Spiritual Needs in People who are Dying
Woodruff R Palliative Medicine (4th Ed)