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?

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.

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

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

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

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

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. Pain assessment in advanced dementia (PAINAD) (Central Coast Adaptation)

10. Bibliography • Anderson SL. & Shreve ST. 2004 Continuous subcutaneous infusion of opiates at end-of-life. Annals of Pharmacotherapy. 38(6):1015-23 • Ellershaw J, Wilkinson S. 2003 Care of the Dying: A pathway to excellence. • Nauck F, Klaschick E, Ostgathe C. 2000 Symptom Control in the Last Three Days of Life. European Journal of Palliative Care 7(3): 81 - 84 • Regnard C, Hockley, J. 2004 A Guide to Symptom Relief in Palliative Care • Twycross R, Wilcock A. 2001 Symptom Management in Advanced Cancer • Wrede-Seaman LD. 2001 Treatment options to manage pain at the end of life. American Journal of Hospice and Palliative Care 18(2): 89-101, 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

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.

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. 2004 Nausea & vomiting in end-stage cancer. American Journal of Nursing 104(11):40-8 • Regnard C, Hockley J. 2004 A Guide to Symptom Relief in Palliative Care • Woodruff, R. 2004 Palliative Medicine • Cherny NI. 2004 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.

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

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. 2004 The Terminal Phase, in Doyle et al Oxford Textbook of Palliative Medicine (3rd Ed) • Jennings AL, Davies AN, Higgins JPT, Broadley K. 2001 Opioids for the palliation of breathlessness in terminal illness. The Cochrane Database of Systematic Reviews, Issue 3. Art. No.: CD002066. DOI: 10.1002/14651858.CD002066 • O'Donnell V. 1998 Symptom management. The pharmacological management of respiratory tract secretions. International Journal of Palliative Nursing 4(4): 199-203. • Wildiers H, Menten J. 2002 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.

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

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

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. 2003 The impact on the family of terminal restlessness and its management. Palliative Medicine 17(5): 454-60 • Ellershaw J. Wilkinson S. 2003 Care of the Dying: A pathway to excellence • Regnard C, Hockley J. 2004 A Guide to Symptom Relief in Palliative Care • Twycross R, Wilcock A. 2001 Symptom Management in Advanced Cancer • Travis S, Conway J. 2001 Terminal Restlessness in the Nursing Facility, Geriatric Nursing 22(6): 308 - 312

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.

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

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

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

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

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.

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. 2003 Symptom Control in Care of the Dying, in Care of the Dying: A pathway to excellence • O’Connor M, Aranda S. (Eds) 2003 Palliative Care Nursing: A Guide to Practice • Wright K. 2002 Caring for the terminally ill: the district nurse's perspective. British Journal of Nursing 11(18): 1180-5

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

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. 2000 Spiritual care. Meeting the spiritual needs of patients through holistic practice. European Journal of Palliative Care 7(2): 60-2. • Neuberger J. 2004 Caring for Dying People of Different Faiths (3rd Ed) • Speck, P. 2003 Spiritual / Religious Issues in Care of the Dying, in Care of the Dying: A Pathway to Excellence • Stanworth R. 2004 Recognising Spiritual Needs in People who are Dying • Woodruff R. 2004 Palliative Medicine (4th Ed)