Palliative Care: Phase of Illness

1. Palliative Care: Phase of Illness Learning Package

2. At the conclusion of this package, participants will be able to: understand the definitions and indicators for each phase of the illness identify the phase of care for a particular patient situation use the phase of care to identify likely factors influencing clinical management use the phase of care to identify likely factors influencing discussions with carers and family LEARNING OUTCOMES Phase of Illness: Learning Package

3. Taken from the Palliative Care Outcome Collaborative (internet access required - PCOC website) Phase 1: Stable Phase 2: Unstable Phase 3: Deteriorating Phase 4: Terminal Phase 5: Bereavement Palliative care Phase of illness Phase of Illness: Learning Package

4. Phase 1. Stable • All patients not classified as unstable, deteriorating, or terminal. • The patient symptoms are adequately controlled by established management. Further interventions to maintain symptom control and quality of life have been planned. • The situation of the family/carers is relatively stable and no new issues are apparent. Any needs are met by the established plan of care. Consider one of the points opposite, then click on the question mark beside that point to see clinical examples of this phase. When you have completed all of the points, click the “Next” button below. Phase of Illness: Learning Package

5. Not unstable, deteriorating or terminal • This may sound self explanatory, but it may be useful to identify what phase this isn’t, to confirm that the patient is, in fact, stable. • Example • Patient with COPD on continuous O2, and requiring assistance with personal ADLs • *No recent exacerbation of shortness of breath; • *No change in functional status (able to mobilize with walking frame and portable O2); • *Respiratory function tests completed 6 monthly and no significant change over last 2 years. Click here to return to previous slide Phase of Illness: Learning Package

6. Symptoms controlled and further interventions planned There have been symptoms develop but are now well controlled. Discussions have occurred regarding treatment options, and the patient is aware of how to manage their current situation. Example Patient with COPD on continuous O2, and requiring assistance with personal ADLs *Self Management Plan has been documented and patient has a copy; *Is managed on preventer inhaler and has reliever if needed; *Has indications for adjusting dose of corticosteroid and script for antibiotics to commence if indicated (triggers documented on plan). Click here to return to previous slide Phase of Illness: Learning Package

7. Family / Carer situation stable • Support for the carer has been planned and now in place. There may be one or more types assistance and support from services. • Example • Patient with COPD on continuous O2, and requiring assistance with personal ADLs • *Son is the main carer, and visits every weekday evening after work to monitor and run errands as required. Daughter visits weekends, does shopping and prepares meals for the following week; • *There has been contact and initial discussion with Carer Support Services, and the son has their 24 hour contact details; • *Personal care workers attend weekdays, assisting with dressing and breakfast Mon-Fri, and with showering twice/week. Weekends patient stays in night attire and gown. Click here to return to previous slide Phase of Illness: Learning Package

8. Phase 2. Unstable • The patient experiences the development of a new unexpected problem or a rapid increase in the severity of existing problems • The family/carers experience a sudden change in their situation requiring urgent intervention by members of the multidisciplinary team. Consider one of the points opposite, then click on the question mark beside that point to see clinical examples of this phase. When you have completed all of the points, click the “Next” button below. Phase of Illness: Learning Package

9. New unexpected problem or rapid increase in severity of existing problem Either requires an urgent change in management or emergency treatment Example Patient with breast cancer and multiple bone metastases on ribs now presents with severe chest wall pain after a recent chest infection *History of severe coughing episode just prior to onset of pain *Pain worsened on deep breathing or palpation of rib *Immediate adjustment of Analgesia and referral to radiotherapy for review . Click here to return to previous slide Phase of Illness: Learning Package

10. Sudden change in family/carer situation Either requires an urgent change in management or emergency treatment Example Patient with breast cancer and multiple bone metastases on ribs now presents with severe chest wall pain after a recent chest infection *patient has been managing personal ADLs independently until onset of pain – now need assistance showering and dressing *Husband is Carer and is managing housework and cooking, can organize clothing, but not able to assist with showering *Nurses arranged to visit to assist showering three times / week, personal carers other days to assist with dressing Click here to return to previous slide Phase of Illness: Learning Package

11. Phase 3. Deteriorating • The patient experiences gradual worsening of existing symptoms or development of new but expected problems. • The family/carers experience gradually worsening distress and other difficulties, including social and practical difficulties, as a result of the illness of the person. Consider one of the points opposite, then click on the question mark beside that point to see clinical examples of this phase. When you have completed all of the points, click the “Next” button below. Phase of Illness: Learning Package

12. Gradual worsening of symptoms or new symptoms These require the application of specific plans of care and regular review but not urgent or emergency treatment Example Patient with lung cancer, on low dose sustained release analgesia and prn breakthrough dose. Previously only short of breath on heavy exertion. *Still mobilizing with walking stick around house, but increasingly unsteady – Arrangement for walking frame to have on hand; *Increase in shortness of breath when lying down – electric bed to be delivered (semi-recumbent for sleeping); *Dietary intake has decreased and weight loss of 5kg over last month – dietary supplements to be trialed. Click here to return to previous slide Phase of Illness: Learning Package

13. Gradually worsening family/carer distress, including social and practical difficulties This requires a planned support program and counselling as necessary. Example Patient with lung cancer, on low dose sustained release analgesia and prn breakthrough dose. Previously only short of breath on heavy exertion. *No family local, neighbour drops in regularly and notices that patient is not getting dressed and going shopping; *Neighbour is concerned about weight loss and calls the patient’s daughter, who contacts the GP; *Discussed with patient to consider prepared meals or shopping assistance. Click here to return to previous slide Phase of Illness: Learning Package

14. Phase 4. Terminal • Death is likely in a matter of days and no acute intervention is planned or required. • The family/carers recognise that death is imminent Consider one of the points opposite, then click on the question mark beside that point to see clinical examples of this phase. When you have completed all of the points, click the “Next” button below. Phase of Illness: Learning Package

15. Death likely within days – no acute interventions • These require the use of frequent, usually daily interventions aimed at physical, emotional and spiritual issues. Typically the person may be: profoundly weak; bed bound; drowsy for extended periods; disoriented; limited attention span; disinterested in food and drink; increasing difficult to swallow medication • Example • Patient with lung cancer, on sustained release analgesia and prn breakthrough dose. Previously only short of breath on heavy exertion. Not taking diet, minimal fluids, complete bed rest. • *Extreme dyspnoea, and only occasionally responding to verbal stimuli • *Request from the patient for ‘comfort’ measures - no intubation • *S/C Opioid for analgesia and dyspnoea, benzodiazepine for distress • *Oral medications ceased Click here to return to previous slide Phase of Illness: Learning Package

16. Family / carers recognise death is imminent Care is focussed on emotional and spiritual issues as a prelude to bereavement Example Patient with lung cancer, on sustained release analgesia and prn breakthrough dose. Previously only short of breath on heavy exertion. Not taking diet, minimal fluids, complete bed rest. *Discussion with family / carer to determine need for priest / pastor *Discussion with family / carer to notify other family of impending death, visits as necessary *Confirmation of planning for funeral arrangements Click here to return to previous slide Phase of Illness: Learning Package

17. Phase 5. Bereavement • Death of the patient has occurred and the carers are grieving. • Bereavement support program is available Consider one of the points opposite, then click on the question mark beside that point to see clinical examples of this phase. When you have completed all of the points, click the “Next” button below. Phase of Illness: Learning Package

18. Immediate After Death Care • This care may include care of the deceased patient, and carer and immediate family. There may be different needs if the patient has died at home, or in hospital / care. • Example • Patient has died at home and the family are asking you what to do next. • * Does the doctor need to visit before the Undertaker arrives? • * Who else do I need to notify? • Patient has died in the hospital/RACF and family have come to collect the patient’s belongings • * Talking about the funeral service / arrangements • * Their plans of what they have to do now Click here to return to previous slide Phase of Illness: Learning Package

19. Bereavement Support • There may be different needs for different family members and carers. • Partner has been reliant on the decease person for shopping and bill paying.Discussion may include: • *how the person will manage these tasks now • *possible referral to community services to assist with these tasks • Sibling is displaying reactions of guilt about having lost touch for many years prior to the death. Discussion may include: • *how they assisted the dying person in their last weeks of life • *what they need to be able to reconcile their feelings of guilt • * possible referral to a bereavement counselor Click here to return to previous slide Phase of Illness: Learning Package

20. Congratulations! You have now completed the “Phase of Illness” training package. You should now be better equipped to: understand the definitions and indicators for each phase of the illness identify the phase of care for a particular patient situation use the phase of care to identify likely factors influencing clinical management use the phase of care to identify likely factors influencing discussions with carers and family For more information, contact your local Specialist Palliative Care Service, or the Loddon Mallee Regional Palliative Care Consortium. Remember to add this to your Continuing Professional Development record. Recommended time is 1 hour of learning.