Palliative Care Working with Disabilities

1. Palliative Care Working with Disabilities Fran Gore and Terri George

2. Outline About Mercy Palliative Care Case Studies Challenges Strengths Future

3. What is going on? Food for thought • We live in a death-defying society • We are instruments of that society • While our knowledge has increased dramatically at a ‘micro’ level, our ability to see the big picture and understand the context in which illness sits has diminished

4. Mercy Palliative Care • community palliative care service • operates in the western metropolitan region of Melbourne. • provides access to 24 hour support • works with residential care facilities (generally in a consultancy role) with patients and the staff. • referrals from health professionals, professionals in other sectors and family members. • does not require GP approval however it is important to advise them of referral to the service. • provides education and support to facilities. • debriefing is available for staff with patients referred to the service

5. Referrals • received over 1250 referrals in past 12 months - youngest patient being days old and our oldest patient over 100. • provides care to between 260 - 290 patients per week • approximately 70 patients dying each month • 18-20% of patients have a diagnosis of non-malignant disease • More than 25% of patients are cared for in a residential facility

6. Geography The Western Region is a vast geographical area (1368sq km), from Punt Road in Melbourne up to Djerriwarrh Creek, Melton down to Little River Hwy Local Government Areas include: • Brimbank • Hobsons Bay • Maribyrnong • Melton • Melbourne • Moonee Valley • Wyndham

7. Case Study 1 • 60 year old lady living in a residential facility • Long term institutionalisation - complex syndrome with intellectual disability • Diagnosed with malignant disease • Physically mobile at time of referral (2007) • Some behavioural challenges • Referred to Mercy Palliative Care early in the illness trajectory • Weekly visits by nursing staff to assess physical symptoms and support staff • Ensure appropriate medication available and administered • Regular liaison with GP • Available 24 hour on-call • Guardianship order in place – decision for no active treatment due to • Type of treatment required • Benefit versus burden of treatment • Family visits occasionally

8. Presenting Issues • Patient behaviour • Requires full supervision • Scratching • Indicative of symptoms requiring management • Approach to care • Staff – on site mixed but clear patient would be difficult to manage in hospital • manager on extended leave, different manager on site • ability to keep S8 medications on site • Dept Human Service - mixed response, guidelines indicate medications can be on site, willing to support on site care and provide resources • Palliative care – able to respond 24 hours, support staff and patient and family • Public advocate – clear understanding of patient/family wishes

9. Case conference No 1 • Issues identified included • Storage and administration of medication • Discussion of Public Advocate’s role and role in implementing the treatment plan • Expectation for place of death • Management of care at death (practical and statutory) • Support for staff – PCAs, RNs • Recognition of impact on other residents • Support for other residents • Availability of after hours support • Management of a hospitalisation

10. Deterioration Deterioration occurred requiring further case discussion Change of Manager at DHS house Presented to A&E with anxious staff A&E assessed not appropriate referral and discharged home following discussions with MPC MPC arranged admission to inpatient unit with support staff for 24 hours later Patient admitted, exhibited challenging behaviours and discharged home within 8 hours Patient settled at home, supported by MPC visits daily and as required Plan developed for care of patient after death (certification, notification of DHS, coroner’s notification etc) Exploration of carers desire to care e.g. continue feeding, allowing patient to rest

11. Case Meeting No. 2 Meeting with DHS staff and House Manager Identified needs for House – equipment, access to medications Identified staff needs and wishes MPC conducted a ‘debriefing/information session with carers (at MPC) Fed back to managers and developed plan to support patient to die at the home Desire to care for the patient in home Struggle to manage ethics of care during deterioration Need for ongoing education and reassurance Patient died some days later Debriefing held for the staff at home within the following 2 weeks

12. Identified Case Challenges Clarity of practices for medication management in palliative care Clarity of treatment management including wishes of the family Non-verbal communication of the patient (especially assessment of pain) Behaviour management out of home Lack of information about the illness and dying process for all staff Management of other residents General care concerns – feeding, sleeping, resting in bed Anxiety of staff in caring for the dying resident Regulations in place for managers of residential care Assumptions made by management about ability of carers to manage the situation

13. Summary Palliative care Is provided in a range of settings Acts in different capacities from consultant to service provider or educator Is provided at anytime throughout the illness trajectory Supports patient, carer/family and staff Collaborates with all services involved Should be included in case conferences Is available 24 hours Provides care in bereavement for family Can be provided using a palliative care approach with generic service providers and specialist palliative care workers as consultants Is multi-disciplinary

14. “ …Dying well is no longer simply a question of the patient being in control or the doctor being in control; nor is it simply an issue of dying at home or in an institution. Living and dying can move towards a participatory model of health care that might involve multiple sites and different decision-makers at different times…” Allan Kellehear 1999 Health Promoting Palliative Care