The role of transitions to palliative care in chronic illness management

1. Margaret O’Connor AMVivian Bullwinkel Chair in Palliative Care Nursing Palliative Care Research Team, School of Nursing & Midwifery Monash University The role of transitions to palliative care in chronic illness management

2. outline • intersection of palliative care, the palliative approach and non-malignant illnesses; • palliative care policy direction around the world; • implications for services.

3. transitions • many transitions in • care, • treatment, • carers • settings of care • decisions about what is important and how people wish to be treated • not necessarily a transition “phase”, but gradual decline

4. healthcare changes • ageing populations; • chronic illness increasing; • advances in medical science and technology; • advocacy for equitable access to palliative care expertise – non-cancer, older people, children, disability.

5. palliative & end of life care • palliative care beginnings based in cancer; • BUT • WHO definition – “…an approach that improves the quality of life of patients and their families… facing the problems associated with life threatening illness…” (2003); • emergent shifts occurring to broaden the care profile/reach of palliative care; • palliative care model has much to offer people with non-malignant illnesses from diagnosis(Connolly 2000).

6. palliative care & a palliative “approach” • palliative care – • refers to specialist services; • required by few people; • offers the expert skills of a range of multi-disciplinary health providers to manage complex symptoms. • a palliative approach – • appropriate for most people at the end of life. • principles of holistic care , • open communication, • focuses on the individual’s quality of life; • provided by all health professionals

7. benefits of a palliative approach • focus on optimising function & comfort for the person and their family; • focus on providing support & managing symptoms; • emphasis on individual choice & control over management including environment of care; • holistic care; • support for family & the person, including bereavement support.

8. a palliative approach to non-malignant illness. • should be considered on diagnosis to integrate symptom management, psychosocial & spiritual support & family care (Oliver 2002); • excellent symptom management throughout the whole illness journey not just at the end of life, enhances quality of life; • “no surprises…” • specialist care as required (Kristjanson, Toye & Dawson 2003).

9. policy issues

10. general comments • changes in palliative and end of life care; • developing countries – • advocacy a key task; • emphasis on cancer, HIV/AIDS, access to morphine; • in many countries, little attention to non-malignant illness.

11. difficulties with policy • policy may be initiated “top down” or “bottom up”; • policy shifts not consistent inter/intra countries;; • policy does not always translate into practice; • “inclusive” or “exclusive” models of palliative care?

12. UK policies • NICE Guidance (2004); • National End of Life Care Programme; • NHS End of Life Care Strategy (2008); • Gold Standards; • all strategies - stress needs of all patients who are dying, regardless of diagnosis.

13. European Association for Palliative Care • EAPC taskforce - guidelines on neurological palliative care & a core curriculum on palliative care / neurology; • no clear statements yet, overall emphasis on all diseases regardless of diagnosis; • triggers to palliative care and end of life care / palliative care / neurology. • (Personal correspondence, Dr David Oliver Chairperson EAPC Taskforce)

14. US policies • hospices began with care of • people with cancer diagnoses; • NHPCO policy challenged US hospices to expand services to all people with a life-threatening illness (Connor,2009); • 2007 – 59% patients with a non-malignant diagnosis;

15. US policies (cont’d) • Medicare Hospice Benefit 1982 – for terminally ill with a prognosis or 6 months or less; • 4 levels of care – routine home care, continuous homecare, inpatient respite (up to 5 days care) and inpatient care; • exponential growth in services in last 25 years. (Connor, 2009)

16. Australia • Recent focus on primary health approaches – “dying is everyone’s business”; • “quality palliative care at the end of life for all” (Palliative Care Australia,1999); • “Guidelines for a Palliative Approach in Residential Aged Care” (www.agedcare.pallcare.org.au) • “Program of Experience in the Palliative Approach” (www.pepaeducation.com)

17. implications for services

18. beginning a palliative approach • discussion can commence anytime , but earlier is recommended , part of care from diagnosis (Oliver, 2002); • explanation-main aim to promote quality of life and manage symptoms; • existing supports – physio, rehabilitation – continue; • can be gradually adopted and integrated into existing care supports.

19. diagnosis- breaking bad news ; proposal of a palliative approach to treatment psychosocial and spiritual support physical management of symptoms inc specialist care as required end of life decisions end of life care bereavement support for family A palliative approach in non-malignant illness (adapted from Mitchell & Borasio 2007)

20. health professional barriers to using a palliative approach • palliative care is only applicable at end stages of life; • how and when to refer; • lack of acknowledgement that the illness is not curable; • lack of knowledge /interest/comfort(fear)(Connelly 00) • lack of familiarity with illnesses; • discomfort discussing the need for palliative care; • resource/funding issues.

21. family concerns to using a palliative approach • communication with health professionals; • lack of understanding that the illness is not curable; • discomfort discussing end of life issues as a family; • unwilling to use external/palliative care resources.

22. conclusion • palliative care service models accommodate all in need of care; • eligibility based on need not diagnosis or prognosis • recommendation to undertake research to explores strategies for the role of palliative care, in assisting the person with chronic illness • palliative care for all, not a luxury service for few...