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

From little things…. big things grow

Research Question – Where to begin?

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

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

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

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)

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

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, 2011 41(2); 2-5.

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

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

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.

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:10.1177/026921631663883

Next step

We get funding – Cancer Institute NSW – Innovation’s Grant Sanderson, CR., Lobb, EA : Upfront Family Meetings for in-patient Palliative Care Services; 2013-2014. $19,977

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

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

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

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 ++

Example: Understanding this family

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.

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

Upfront Family Meetings for Community Palliative Care Services - CUFF

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.

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.

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

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

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

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).

Stay tuned………….

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

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, 2011 41(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:10.1177/026921631663883 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, 13-15 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