“Are the Goal Posts Moving?”

2. “Are the Goal Posts Moving?” From Cure to Palliative Care: Patient Perspectives -Karen Levy, RN, BSN

3. Goal: An end toward which effort is directed :achievable, reasonable :can be time limited :mutually agreed upon

4. Objectives At the end of this session you will: • Describe the transition process. • Know research findings about patients perspectives of their transition to palliative care. • Describe how these findings can be applied in the nursing practice setting.

5. The question Is there research evidence to support best nursing practices for the care of patients making the transition from cure to palliative care?

6. The transition process requires not only that we • bring a chapter of our lives to conclusion, but • that we discover what ever we need to learn for • the next step we are going to take. We need to • stay in transition long enough to complete this • important process, not to abort it through • premature action. • Bridges, 1980

7. Transition Types Conditions Responses Patterns Properties Nursing therapeutics Meleis et al. 2000

8. Type • Health/illness • Developmental

9. Properties • Awareness • Of diagnosis/prognosis • Engagement • Information needs • Exploring treatment options • Time Span • Variable • Critical Points and Events • Advancing symptoms/increased debility

10. Conditions: Facilitator & Inhibitor • Personal • Meanings • Cultural beliefs & attitudes • Socioeconomic status • Preparation & knowledge • Community • Society

11. Patterns of Response • Process • Feeling connected • Interacting • Developing confidence & coping • Outcomes • Mastery • Integration

12. Nursing Therapeutics ?

13. Active Disease Treatment Palliative Care Relationship between active disease treatment and palliative care

14. Transition Treatment Palliative Care

15. The Process Systematic literature review

16. Inclusion criteria • Cancer patients’ perspective • Palliative patients’ perspective • Needs of patients with advanced cancer • Cancer patients and end of life issues

17. The findings • 11 primary research articles • 3 categories • Experience of receiving the news • Needs assessment: information needs and expectations of care • Experience of coming to terms with the news

18. Experience of Receiving the News • Symptoms ‘took over’ • Pace and timing could be rapid • Little involvement in decision making Ronaldson & Devery, 2001

19. Experience of Receiving the News • Sense of well being, security and individual strength • Previous knowledge, ability to participate Friedrichsen et al. 2000(a) • View of the doctor • Words used to convey news • Friedrichsen et al. 2000(b), 2002

20. Experience of Receiving the News • Pt. knew it was bad news based on non-verbal • Believed remission was unlikely • Appreciated life more • Range in emotion from hopeful – hopeless • Mahon & Casperson, 1997

21. Needs Assessment • Patients with progressive disease (treatment changes) experienced • Pain , weakness • “No one to talk to” • “No one who understands” • “Being treated differently” • Spiritual /marital concerns • Dudgeon et al. 1995

22. Needs Assessment: Info Needs • Receiving palliative RT wanted info: • Pain control (75%) • Management of weakness & fatigue (58%) • Management of shortness of breath (52%) • What causes cancer (48%) • How to access home care resources (46%) • Wong et al. (2002)

23. Patients understanding Physicians understanding Prognosis and treatment plans

24. Needs Assessment: Info Needs • 118 patients with incurable cancer • 57% knew life expectancy • 44% knew alternatives to ca tx • 36% knew benefit of tx for qol • 30% were offered choice in tx • Less than 10% were validated • Tattersall et al 2002

25. Needs assessment:expectations • All eligible for hospice but expected info: 89 % - new treatments 72% - likelihood of cure 69% - options if tx not successful Kutner et al. 1999

26. Expectations • Cancer patients w progressive disease (n=47) • 44% thought they were stable or in remission • 26% did not know disease status • 14 % were correct Sapir et al 2000

27. Expectations • In palliative patients whose treatment had failed and care goals were comfort • 32% considered goal to be cure or life prolongation • Kutner et al 1999

28. Expectations • Study of cancer patients understanding of treatment (n=100) • 33% with mets localized • 34% treated as palliative cure • 10% treated for cure palliative • McKillop et al. 1988

29. Expectations • Of oncologist and oncology nurses • Patience, tact, understanding of psychosocial concerns • Trustworthiness & reliability • Knowledge re: pain management, chemo, • Diagnostic skills • Treatment focus = supportive focus Sapir et al, 2000

30. Coming to Terms With the News 6 themes: • Pain & symptom management • Clear decision making • Preparation for death • Completion • Contributing to others • Affirmation of the whole person • Steinhauser et al. 2001

31. Coming to Terms With the News • Naming someone to make decisions • Knowing what to expect • Financial affairs in order • Treatment preferences in writing • Physician comfort in talking about death

32. Implications for Best Practice Early assessment and intervention • Symptom management • Communication • Patients’ understanding of disease status/ treatment alternatives/goals • End of life preparation • Cultural norms/socioeconomic status

33. Implications for Best Practice • Decision making Depends on information/communication/physical state • May be deferred to others

34. Gaps • Geriatric population • Cultural factors • Societal factors • Patient readiness

35. Are the goal posts moving?

36. Summary • Transition is a complex process. • Reviewed cancer patients perspectives. • Implications for nursing practice.

37. Thankyou for being here!