End of Life Care

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?

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.

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

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

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

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

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

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

0 1 2

BreathingIndependent 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

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

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

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.

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

Review

• If the prescribed medications are ineffective a medical review is indicated.

• Consult with the specialist palliative care service if indicated

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

Respiratory problems in end of life care

• Two respiratory symptoms that can occur during the dying process are excessive respiratory secretions and dyspnoea.

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.

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.

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

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.

Review

• If the prescribed medications are ineffective a medical review is indicated.

• Consult with the specialist palliative care service if indicated

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

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.

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

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

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.

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

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.

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

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.

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 arePositioning Mouth careEye care Skin careMicturition Bowel care

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”

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

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

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

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

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.

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).

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

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

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

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.

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)