Research at Calvary Health Care Kogarah

Palliative Care and End of Life Research projects

Calvary Health Care Kogarah (CHCK) Research Centre has a staff of 7 and includes a clinical trials nurse; PhD students; a clinical research fellow; a palliative care consultant and a senior research officer. We are also supported by a volunteer whose assistance is invaluable.

CHCK is participating in important studies that are being run across Australia. These collaborations include the Palliative Care Clinical Studies Collaborative (PaCCSC), the former Improving Palliative Care through Clinical Trials (IMPACCT – NSW), and the Psycho Oncology Co-Operative Group (PoCoG). Some of the projects have been funded by the Department of Health and Ageing, NSW Ministry of Health, National Health and Medical Research Council, Cancer Institute NSW and Cancer Australia and include clinical studies of medications used for pain, delirium, bowel obstruction and for breathing difficulty. Psycho-social studies have included a study of how patients cope with the uncertainty of living with a terminal illness; assisting couples communicate about end of life issues; unmet needs of patients with high grade brain tumours; how family meetings with the palliative care team affect patients’ and families’ experience of decision-making during their time in palliative care; understanding the journey of patients from culturally and linguistically diverse communities; sleep among caregivers of patients in palliative care and a study exploring carers’ experience of the death; the support they received and their grief and coping over the first two years of bereavement.

Other research activities involve smaller projects looking at the quality of care for our patients, and how we can improve their experience of our service.

 

Professor Elizabeth LOBB

Lead Researcher

Liz Lobb is Professor of Palliative Care (Allied Health) based at Calvary Health Care Kogarah, and is an Adjunct Professor in the Faculty of Medicine at the University of Notre Dame, Sydney.  Professor Lobb obtained her PhD in Psychological Medicine from the Faculty of Medicine at the University of Sydney in 2001. She has worked clinically as a bereavement counsellor and educator for 24 years. In addition, as a behavioural scientist, Liz has worked in psycho-oncology and palliative care research for 21 years. She has established national and international research collaborations and pursued independent multi-disciplinary clinical collaborations in oncology, haematology, cancer genetics and palliative care.

Professor Lobb’s passion for palliative care and end of life research is motivated by a desire to provide enhanced evidence-based communication and psycho-social care across the cancer continuum from diagnosis, through treatment, remission and survivorship or relapse, palliative care and bereavement support for families and caregivers.

Current Studies

Funding:  Cancer Australia $517,334. Investigators: Halkett GKB, Nowak A, Lobb EA, Agar M, Miller L, Moorin R, Shaw Aims: A diagnosis of High Grade Glioma (HGG) is invariably fatal, with a rapid decline in patient function and independence also affecting family carers. Unidentified carer distress can contribute to unintended and costly consequences for patients through increased unscheduled emergency presentations and length of inpatient stay, and for the carer in the form of psychological morbidity and later complicated grief. The annual Australian replacement cost associated with carer provision of informal care is estimated at $40.9 billion. This study aims to evaluate the efficacy of a tailored nurse-led education and support intervention for carers of people with HGG in a multi-state RCT. The objectives are: 1) Determine intervention’s impact on carer preparedness and distress 2) Determine intervention’s impact on carer anxiety and depression, quality of life, competence, and unmet supportive care needs and grief and 3) Assess changes in costs related to HGG patient healthcare resource utilisation as a consequence of improved carer support, education and wellbeing, relative to the costs of implementing the intervention.

Funding: Australian Government, DIISR Collaborative Research Network. University of Notre Dame. $494,773. Investigators: Professor Leanne Monterosso, Professor Liz Lobb, A/Professor Max Bulsara. The survivorship clinic will be led by the Haematology Clinical Nurse Coordinator (HCNC) in collaboration with the departmental haematologists, counselling psychologist and the Adolescent and Young Adult CNC (AYA CNC). The CNCs will undergo an extensive training program to facilitate a skilled and consistent approach in the implementation of the survivorship clinic and the HSSM Care Plans. The training program will include learning activities that develop advanced knowledge and skills in developing individualised self-management care plans for patients who have completed treatment for breast or colorectal cancer, and is based on the guide published by the Australian Government Department of Health and Ageing.

Aims: i) to reduce patient reported unmet informational needs in patients randomised to the intervention group through the provision of evidence-based, tailored information.

ii) to reduce anxiety levels in patients randomised to the intervention through the provision of self-management education.

Funding: Agency for Clinical Innovation $24,040. Investigators:  Professor Liz Lobb, Ms. Jane Graham, Ms. Mei Lau, Dr. Jan Maree Davis. Aims: We routinely collect satisfaction data from our patients, but we have little information on their experience of care. Patient-reported outcome measurements (PROMS) play an increasingly important role in health care in allowing patients to assess the effect and quality of their care. This project will utilise validated PROMs to help understand our patients’ experience of care in our specialist palliative care unit. The aims of the study are: a) to collect information from the patient to inform the delivery of whole-person centred care and b) to understand the patient experience of care during admission. The objectives are: a) In a brief 5 – 10 minute interview soon after admission to ask each eligible patient the Patient Dignity Question (PDQ) “What do we need to know about you as a person to give you the best possible care during your stay with us,” and then to integrate that information into our processes of care; b) To invite the patient at discharge to complete the Palliative Care Outcomes Scale (POS) which measure patient’s physical symptoms, psychological, emotional and spiritual and information and support needs.

Funding:  Australian Government, DIISR Collaborative Research Network University of Notre Dame. $142,310. Investigators: A/Professor Christine Sanderson, Professor Liz Lobb. Aims: a) to describe the population who are offered Ambulance Palliative Care Plans; b) to assess the acceptability and usability of Ambulance Palliative Care Plans for patients, their caregivers, and clinicians; c) To study the perceptions of patients and caregivers and their experiences of having an Ambulance Palliative Care Plan; d) To study patterns of care for community palliative care patients who have an Ambulance Palliative Care Plan and e) To develop a health economics model to analyse the impact of Ambulance Palliative Care Plans.

Funding: National Breast Cancer Foundation. $200,000. Investigators:  Agar, M., Hosie, AM., Davis, JM et al This study aims to determine if a tailored multi-component non-pharmacological delirium prevention intervention is feasible and acceptable for people with advanced cancer in hospital.

The design is a cluster randomised controlled trial, where sites, rather than patients, are allocated to the intervention or the control (waitlisted to the intervention).All patients at participating sites will undergo routine delirium screening and diagnostic assessment. In addition, patients being treated at sites allocated to the intervention will receive a multi-component delirium prevention intervention that includes six domains: preserve natural sleep, maintain optimal vision and hearing, optimise hydration, promote communication, orientation and cognition, optimise mobility and function, and family partnership.  Intervention delivery will be tailored to the site, and strategies will be tailored to patient need. The primary outcome is adherence to the intervention, defined as the proportion of patients who achieve at least four completed domains for least five of the first seven days of admission, measured by medical record audit. Secondary outcomes relate to fidelity and feasibility, acceptability and sustainability of the study intervention, processes and measures in this patient population, using quantitative and qualitative measures. Delirium incidence and severity will also be measured.

The study will inform whether a multi-component non-pharmacological delirium prevention intervention in people with advanced cancer is feasible for testing in a phase III trial.

Funding: PaCCSC. Site Investigator: Dr. Caitlin Sheehan. Aims: To enhance the evidence base for the pharmacological treatment of chronic refractory breathlessness using potential therapies compared to placebo. This study aims to compare the difference in benefits and side effects in people with breathlessness and Chronic Obstructive Pulmonary Disease taking once daily extended release morphing at up to four different dosing levels when compared to placebo.

Funding: PaCCSC. Site Investigator: Dr. Caitlin Sheehan. The primary objective of this study is to assess the clinical benefit of PAX-1 as an adjunctive treatment for persistent cancer pain, as measured by mean daily pain intensity on an 11 (0-10) point Numerical Rating Scale (NRS).

The secondary objective(s) of this study are to evaluate the efficacy of PAX-1 compared to placebo as adjunctive treatment for persistent cancer pain.

Funding: Australian Government, DIISR Collaborative Research Network University of Notre Dame. $64,131. Investigators: Professor L. Monterosso, Professsor Liz Lobb, A/Professor Max Bulsara

Funding:  Cancer Institute NSW Innovations in Cancer Control, Multi-cultural Community Engagement Grant $99,936; Investigators; Sabrina Man; Jane Graham. Aim: To identify the issues and barriers of Chinese palliative care patients and their families in accessing palliative care service and develop information and service strategies to improve the quality palliative and end-of-life care.

Funding:  In-kind. Investigators. Professor Jane Phillips and Dr. Caitlin Sheehan. Aims: To validate a modified Life-Space Assessment for use with community dwelling palliative care populations using a short-time frame follow up (Days 0, 7, 14, and 21). The validation includes the examination of the reliability and validity of the modified expanded LSA. Patient participation requires them to be community dwelling palliative care patients who consent to weekly verbal questionnaires via phone calls for 5 weeks.

Completed Projects

Funding: NSW Health, Flexible Funding. $88,740. Investigators:  Lobb, E.A., Backhouse, C., Oehme J., Lau, M., Belfanti, C., Graham, J., Davis, JM, Comans, T.

Background: Evidence based guidelines exist to support a palliative approach in residential aged care.  These guidelines were initially released in 2006 but little is known about the extent to which they have impacted on practice change. There is little data on current palliative care practice within Australian residential aged care settings, or on the effectiveness of implementing these guidelines in this setting. Methods: A scoping study was undertaking to gain an understanding of RACFs current palliative care population; their patterns of referral; perceived barriers to the provision of good palliative care and a PC needs assessment.  A palliative care Clinical Nurse Specialist with extensive experience in aged care conducted telephone interviews with the facilities.  Most surveys were completed by a telephone interview; nine facilities requested emails and two were returned. Sample: 60 RACF’s in the LHD with a combined population of more than 4,000 residents were identified. Results: Seventy-eight percent (78%) of RACF’s completed the survey (n=47). Conclusions: The palliative care needs of residential aged care facility residents were explored and significant gaps in service provision were found to be present, which if addressed, would vastly improve the care of this elderly and vulnerable population, and create substantial financial savings for the LHD.

Funding:  Multi-Cultural Grant, $7,925.

Investigators:  Professor Liz Lobb, Ms. Jodi Ellis, Ms. Margo Green. Background: At Calvary Health Care Kogarah (CHCK) China, Greece, Italy and Macedonia are the top 4 countries of birth for our CALD patient population.  However, we do not have a clear picture of this client group. Aims:  This study aimed to understand the perceived barriers to access to palliative care by CALD patients and their families. Methods: Four focus groups were held with palliative care in-patient and community nursing staff and allied health staff (n = 29). Results: The following themes were identified: language around the disease; building trust; family members living overseas; expectations of families and communities; the role of families in decision-making, managing care, discussing diagnosis and prognosis and the appropriateness of interpreter usage. Language around the disease, in particular use of the word cancer, was noted to be a challenge especially when family members wanted to protect the patient and not have diagnosis or prognosis discussed. The importance of building trust building and rapport and of establishing a relationship before any real communication could occur was highlighted.  This was couched in the knowledge that many cultural groups have come from repressive regimes and trust in institutions or authority was lacking.  Discussions with family members who lived overseas on whether to come to the bedside were difficult especially when the diagnosis or prognosis had not been communicated. Staff commented on the family’s strong expectations of care, but also of the community’s expectation. This was especially noted in terms of providing care, be it in the home, in hospital, or having the patient transferred to a nursing home. Families felt keenly the censure of family and community if expectations around care were not fulfilled. Participants also highlighted that interpreter use was more nuanced than lack of access and related to the issue of family/group decision making in come cultures rather than individual autonomy.  Conclusion: Focus groups with staff provided a nuanced insight to communication issues.  Participants prefaced their comments that dying is difficult for everyone, regardless of culture. They highlighted not only the importance of communication, but the difficulty when information could not be obtained which was considered important to patient and family care and support.

Funding:  Cancer Institute NSW Innovations Grant $19,977.

Investigators:  A/Professor Christine Sanderson; Professor Liz Lobb

Background: Family meetings in palliative care can enhance communication with family members and identify unmet needs. However, the patient’s voice is rarely heard. Objective: This quality improvement project investigated a patient-centered family meeting, which is a different approach to palliative care family meetings, to determine its feasibility and acceptability for patients, family and the palliative care team. Setting and Participants:  Newly admitted patients to an Australian in-patient specialist palliative care unit were invited to ask anyone they wished to join them in a meeting with the palliative care team and to identify issues they wished to discuss. Design:  A pre and post-test quality improvement project was conducted from 2013 -2014. Consenting inpatients were interviewed shortly after admission; participated in a family meeting and re-interviewed 2-3 days after the meeting. Family members provided feedback at the end of the meeting.  A focus group was held with staff for feedback on this new approach for family meetings. Meetings were observed, documented and thematically analysed. Results: 31 newly admitted patients were approached to participate in a family meeting. 84% had family meetings and the majority (96%) was attended by the patient. Thematic analysis revealed 69% of patient-centered meetings raised end-of-life concerns and 54% were “family-focused. Discussion: Patient-centered family meetings in palliative care were shown to be feasible and acceptable for staff, patients and family members. Many patients and families spontaneously shared end-of-life concerns.

Funding: Cancer Institute NSW Evidence to Practice Grant. $25,000. Investigators: C. Sanderson, EA Lobb; E. Kough, A. Johnson. Introduction: Communication between the patient, family and health care professionals is fundamental within the field of palliative care. Australian guidelines suggest that family meetings be routinely held during admissions for inpatient palliative care. However, offering such meetings to patients in the community has not previously been explored. We present data from a feasibility study which aimed to hold a family meeting in patients’ homes within the first four weeks after referral to a community palliative care service. Materials and methods: New referrals to a community palliative care service were identified. Eligible and consenting patients were offered a family meeting and were asked to invite eligible and consenting family members and caregivers to attend. The meetings were facilitated by a community palliative care nurse and were observed by a researcher, who recorded the meeting content using a structured observation tool. Patients participated in a follow-up interview after the meeting and family members completed a feedback questionnaire. Results: 107 new referrals were screened for this study and 87% were identified as ineligible. Of these, 48 were ineligible to participate in the study due to physical or cognitive limitations or were unable to nominate family meeting participants and 42 were identified as ‘otherwise eligible’ but did not provide consent to participate (53% and 47% respectively, where n = 90).  Seventeen patients were eligible to participate in this study and eleven family meetings were held. 7 family feedback questionnaires were received and nine follow-up interviews were held.  Feedback included that the meetings were ‘helpful… enlightening… got to ask questions and got answers…’ and elicited themes of families ‘continuing to talk after the meeting,’ and ‘feeling supported.’ Conclusion: 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. Participation also depends on the willingness for patients and families to engage in open discussion. However, there does appear to be value in holding a family meeting in the community setting.

Funding: Cancer Institute NSW $44,500. Investigators:  Professor Liz Lobb, Ms. Sue Hanson, Dr. Christine Sanderson, A/Professor Matthew Links, Professor Winston Liauw.

Background: More than half of all deaths in Australia occur in acute hospitals.  The quality and safety of patterns of practice have not been well described in the hospital setting. Aims:   To present a detailed survey of medical practice and interventions in cancer patients during their last week of life.  Method: We retrospectively audited medical records between July 2012 and June 2013 using a specifically designed audit tool to describe key clinical elements in the patient journey. Results: The majority of patients died on the oncology ward (65%). The average length of stay in the last admission was 13 days. Nearly 25% of patients had pain in the last week of life.  On the day of death 32% of these patients had procedures and/or investigations and 20% were on the waiting list for hospice transfer. 97% of patients had a Not for Resuscitation Order documented; 56% had an emergency review call during their last admission. 89% of patients were seen by the palliative care team. 64% of patients were commenced on an end-of-life pathway. Conclusion: Although patients were recognised as dying, and symptom burden was unacceptably high, the intensity of medical care and intervention remained high until the day of death. It is likely that much of the care was burdensome, low quality and of low value.  Clinicians in acute care need to move beyond an exclusive focus on the resuscitation status and use structured care processes that provide a more complete approach to end of life care.

Publications – Calvary Health Care Kogarah 2016 – 2017

  • Andriessen, K, Lobb, EA, Mowll, J., Dudley, M., Draper, B., Mitchell, P.B. “Don’t bother about me”. The grief and mental health of bereaved adolescents. Death Studies. Accepted October, 2017
  • Andriessen, K, Lobb, EA, Mowll, J., Dudley, M., Draper, B., Mitchell, P.B. “The help-seeking experiences of bereaved adolescents: A qualitative study.” Death Studies, Accepted October 2017.
  • Sanderson, C., Johnson, A., Cahill, P.,  Phillips, J., Lobb, EA. Patient-centered family meetings in palliative care:  exploring a different approach to communication with patients and families at the end of life. Annals of Palliative Medicine. Accepted July 2017.
  • Hosie, AM; Agar, M., Lobb, EA. Davidson, P., Phillips. J., Improving delirium recognition and assessment for patients receiving palliative care:  A mixed-methods meta-synthesis. Intl Journal of Nursing Studies. Accepted July, 2017.
  • Monterosso, L, Taylor, K., Platt, V, Lobb, EA Krishnasamy, M, Yates, P., White, K., Johnson, C, Musiello,T., Bulsara, C., Stratton, K, Addiscott, T., Joske, D. A qualitative study of the post-treatment experiences and support needs of survivors of lymphoma. European Journal of Oncology Nursing.  Accepted March 2017.
  • Halkett, GKB, Lobb, EA, Miller, L, Shaw, T, Moorin, R. Long, A, King, A, Clarke, J, Fewster, S, Nowak, NK. Do Carer’s levels of unmet needs change over time when caring for patients diagnosed with high grade glioma and how are these needs correlated with distress? Supp.Care in Cancer. DOI.101007/s00520-017—3846-      x August, 2017.
  • Maltby, K., Sanderson, C., Lobb, EA, Phillips, J. Investigation of sleep disturbances in caregivers of advance cancer patients: A systematic review, Palliative & Supportive Care (2017) 15,125-140.
  • Monterosso, L., Lobb, EA., Krishnasamy, M., Yates, P., White, K. Living with multiple myeloma: A focus group study of concerns and unmet needs. Journal of Patient Experience 2017; pages 1.10. DOI10.1177/2374373517715011.
  • Francois, K., Lobb, EA., Barclay, S., Forbat, E. The Nature of Conflict in Palliative Care: A Qualitative Exploration of the Experiences of Staff and Family Members. Patient Education and Counselling. DOI: 10.1016/j.pec.2017.02.019.
  • Halkett, GKB, Lobb, EA, Miller, L, Shaw, T, Moorin, R. Long, A, King, A, Clarke, J, Fewster, S, Nowak, NK “Feasibility testing and refinement of a supportive       educational intervention for carers of patients with high-grade glioma – A pilot study” Journal of Cancer Education (2017) DOI:10.1007/s3187-017-1125.
  • Cahill, PJ, Lobb EA, Sanderson CR and Phillips JLWhat is the evidence for conducting palliative care family meetings? – A systematic review. Palliative Medicine (2016) DOI:10.1177/026921631663883.
  • Halkett, GKB, Lobb, EA, Shaw,T., Rogers, M., Miller, L,  Hovey, E, Nowak, NK Distress and psychological morbidity does not reduce over time in carers of patients with high grade glioma. Supportive Care in Cancer 1-7 March 2017, Volume 25, Issue 3, pp 887–893. DOI: 10.1007/s00520-016-3478-6
  • Hosie, A.M., Lobb, EA, Agar, M., Davidson, P.M., Chye, R. Lam, L.& Phillips, JL Measuring Delirium Point-Prevalence in Two Australian Palliative Care Inpatient Units. International Journal of Palliative Nursing. International Journal of Palliative Nursing, 22(1):13-21, 2016 Jan 2. doi: http://dx.doi.org/10.12968/ijpn.2016.22.1.1
  • McSpedden, M., Mullan, B.,Sharpe, L., Breen, L.J., Lobb, EA. The presence and predictors of complicated grief symptoms in perinatally-bereaved mothers from a bereavement support organization. Death Studies. (2017). Death Studies, 41, 122-117. IF = 1.102, Q2 for  http://dx.doi.org/10.1080/07481187.2016.1210696
  • Mowll J, Lobb EA, Wearing M.  Learning from the meaning attributed to seeing or not seeing the body: Supporting bereaved relative’s choice to view in the aftermath of a sudden and unexpected coronial death. Death Studies Vol 40, Issue 1, 2016