1. Translating Research into Clinical Practice
Professor Liz Lobb
Calvary Health Care Kogarah
Cunningham Centre for Palliative Care
School of Medicine, University of Notre Dame

2. From little things…. big things grow

3. Research Question – Where to begin?

4. My brilliant idea… Research Questions can arise from: Necessity
Clinical experience
Reading
Meetings, seminars, conferences
Students
Creative processes

5. Our idea…
Came from the fortnightly journal club. Reading an article on guidelines for conducting family meetings* Noted – not a lot of input from the patient in developing the guidelines Guidelines focussed on family members being present – not necessarily the patient
* Hudson P, Quinn K, O'Hanlon B, et al. Family meetings in palliative care: Multidisciplinary clinical practice guidelines. BMC palliative care 2008;7:12

6. A quality improvement study No funding
We begin
A quality improvement study
No funding

7. Quality Improvement Project
The role of family conferences in the provision of optimum palliative care
Aims:
To retrospectively review medical records of consecutive patients from a Specialist Palliative Care Service (Sacred Heart Health Services)

8. Who best to do this…..? Medical student – ILP Project
Literature review
Wrote a protocol
Designed a data mining tool
Reviewed the tool
Obtained ethics approval

9. Results 333 patient records examined
15 family conferences documented as held
Focus group with palliative care multi-disciplinary team (n = 13)
Tobin, B., Lobb, EA, Roper, E. Ingham, J. Is the patient voice under-heard in family conferences in palliative care? A question from Sydney, Australia. Journal of Pain and Symptom Management, (2); 2-5.

10. Dominated by discussions led by Health Professionals
Content
Carer’s Voice
Patient’s medical condition
Prognosis
Options for place of residence
Discharge plans
Response to carer’s questions
Information about available health supports
Caregiving strategies
Patient’s welfare
Confusion
Side effects of medications
Family needs for support

11. PATIENT’S VOICE WAS NOT HEARD
Desire to go home
Fear of being a burden
Preference for one residential facility over another
? Expressed by patient, attributed to patient by others
PATIENT’S VOICE WAS NOT HEARD

12. What do we know from literature
Effective communication in palliative care is central to adequately addressing patient and family needs and concerns (Carlene et al 2003; Steinhauser et al 2000)
The bringing together of patients, family and clinicians for a purposeful discussion assists with patient-family and clinical team communication in the specialist palliative care setting (Fineberg et al 2011; Hudson et al 2008)
This “family meeting” or “family conference,” as it is referred to in the literature, facilitates discussion about the illness experience, care choices, and end-of-life decision-making. (Fineberg et al 2005; Fineberg et al 2011, Powazki & Walsh 2013)
Hannon et al. (2012) demonstrated that unmet family needs and concerns were significantly improved as a result of family meetings.

13. Recommendations from literature*
Despite some evidence to support the appropriateness of family meetings in palliative care, only a limited number of studies have been undertaken to examine the outcomes of family meetings.
The authors recommended further studies to review the impact of family meetings from the family and clinician perspective.
* Cahill, PJ, Lobb EA, Sanderson CR and Phillips JL. What is the evidence for conducting palliative care family meetings? - A systematic review. Palliative Medicine (2016) DOI: /

14. Next step

15. We get funding – Cancer Institute NSW – Innovation’s Grant
Sanderson, CR., Lobb, EA : Upfront Family Meetings for in-patient Palliative Care Services; $19,977

16. Research Question – Upfront Family Meetings
“Is it helpful to have routine early family meetings for newly admitted patients?”
We hypothesised that these meetings could:
Improve communication, decision-making and discharge planning
Improve family’s participation in planning future care
Reduce patient and family distress during the transition to palliative care
Be more patient-centered than our usual family meetings

17. Study methods
We recruited and consented patients for Upfront Family Meetings – first admission to Calvary Health Care Kogarah
Patients were given a written invitation
Patients were interviewed beforehand:
Your expectations of the admission?
Who is affected by your illness?
What are your concerns?
Are you at peace?
Observed and documented the family meetings - attended by psychosocial team (Medical / SW / PC) plus patient and any family they wish
Written feedback from family members
Follow-up interviews with patients

18. Compared with usual practice
We looked at our usual family meetings for comparison
Intervention group – One Palliative Care Consultant’s patients:
Comparison group – other Consultants’ patients
Patients were consented and interviewed (as per Intervention arm)
Waited to see if family meetings were held
Observed and evaluated those that were

19. What was discussed Discussion of symptoms and problems ++
Advance care planning +++
(prognosis, meaning of symptoms, goals of treatment, what to expect, preparation for death)
Relationships and coping +++
Understanding this family and its story +++++
Understanding palliative care, our services, the plan ++

20. Example: Understanding this family

21. Conclusion
Developing a patient-centered approach to family meetings results in a different kind of meeting from standard family meetings.
A patient-centered family meeting model has been developed which includes active involvement of the patient to the extent that they are able to, allowing them to identify who they wish to be present, and what is discussed.
This approach can provide valued opportunities for patients and their families to have shared conversations about end-of-life and family concerns.

22. Further funding to translate
Evidence to Practice Grant – Cancer Institute NSW
Sanderson, CR., Lobb, EA : Upfront Family Meetings for Community Palliative Care Services. (2014) $25,000

23. Upfront Family Meetings for Community Palliative Care Services - CUFF

24. Results
108 new referrals were screened for this study and 82% were identified as ineligible.
Of these, 41 were ineligible to participate in the study due to physical or cognitive limitations;
7 were unable to nominate family meeting participants
41 were identified as ‘otherwise eligible’ but did not provide consent to participate
19 patients were eligible to participate in this study
11 family meetings were held.
7 family feedback questionnaires were received and nine follow-up interviews were held.

25. Challenges
Our data depicts the instability and complexity of patients’ medical and psychosocial situations at this point in their care.
Hence, barriers to holding a family meeting in the community at the time of referral are significant.
The co-ordination of a meeting is challenging as it involves aligning a number of variables including the availability of all parties involved.
It is a challenging time for patients and their supporters, emotionally and logistically, however for those who received the intervention feedback was positive.

26. Where to from here?
PhD student – develop the model further

27. Getting more sophisticated……..
Feasibility Study – funding PhD Scholarship from Collaborative Research Network Grant – University of Notre Dame

28. THE VOICE STUDY: Valuing Opinions, Individual Communication and Experience in Palliative Care

29. Objectives
Assess the acceptability and feasibility of providing planned Patient-Centred Family Meetings in a specialist inpatient palliative care unit;
Understand the benefits and burden of participating in a Patient-Centred Family Meetings from the patient, family and clinician perspective;
Assess the suitability and feasibility of the selected outcome measures for patients and families; and
Inform the development of a future phase III Randomised Control Trial (RCT).

30. Stay tuned………….

31. Closing message Research takes time Begin small Pilot studies help
Use data for funding
Be flexible
Collaborate
Publish as you go
Have fun

32. Publications & Conference Presentations
Tobin, B., Lobb, EA, Roper, E. Ingham, J. Is the patient voice under-heard in family conferences in palliative care? A question from Sydney, Australia. Journal of Pain and Symptom Management, (2); 2-5.
Cahill, PJ, Lobb EA, Sanderson CR and Phillips JL. What is the evidence for conducting palliative care family meetings? - A systematic review. Palliative Medicine (2016) DOI: /
Lobb EA Invited speakers Upfront Family Meetings. Special interest Social Workers Group (Palliative Care). PEPA sponsored workshop, Broadway 27th June, 2014.
Sanderson, C., Johnson, A., Lobb, EA., Mowll, J. Studying family meetings: what have we learned and what should we measure? 12th Australian Palliative Care Conference 3 – 6 September, Canberra ACT, 2013
Sanderson, C., Johnson, A., Lobb, EA., Mowll, J. Do early patient-centered family meetings reduce patient and family distress at first admission for in-patient palliative care? 12th Australian Palliative Care Conference 3 – 6 September, Canberra ACT, 2013
Cahill, P., Lobb, EA, Phillips, J. Sanderson, C. What is the evidence for conducting family meetings in palliative care. Palliative Care NSW Biennial State Conference 2016, October, Broken Hill (Poster)
Cahill PJ, Phillips JL, Lobb EA, Sanderson CR. Is their good evidence that conducting family meetings in palliative care is worth the effort: Results from a systematic review Oral . Fit for the Future, Palliative Care Australia Conference, Melbourne 1-4 September 2015