Sustainable Palliative Care

Program Director: Associate Professor Graydon Davison

External Collaborators:

  • Professor David Currow, CEO Cancer Institute of NSW, Chief Cancer Officer NSW, Professor of Palliative and Supportive Services, School of Medicine, Flinders University;
  • Professor Geoff Mitchell, Professor of General Practice and Palliative Care, Ipswich Clinical School, School of Medicine, University of Queensland;
  • Associate Professor Richard Chye, Area Director, Palliative Care, Eastern Sydney, Director of Palliative Care Sacred Heart Hospice;
  • Associate Professor Katy Clark, Director Palliative Care Hunter New England Area Health Service, Director Palliative Care Mater Newcastle;
  • Dr Meera Agar, Director of Palliative Care, Braeside Hospital;
  • Dr Andrew Broadbent, Director Palliative Care, Northern Sydney and Central Coast Area Health Service, Director of Palliative Care Greenwich and Neringah Hospitals;
  • Ms Naomi Byfieldt, Clinical Trial Coordinator, Department of Palliative Care, Mater Newcastle;
  • Dr Michele Foster, Applied Health Policy and Acting Director Postgraduate Research, School of Social Work and Human Services, University of Queensland;
  • Ms Sue Hanson, National Manager Palliative Care Services, Little Company of Mary Healthcare Limited;
  • Ms Rosslyn Holloway, Director of Hospice Services, Ipswich Hospice Care Inc.;
  • Dr Alex Kristovics, Organisation Studies, School of Management, University of Western Sydney;
  • Dr Philip Lee, Senior Staff Specialist Palliative Care, Westmead Hospital;
  • Dr Michael Noel, Clinical Director, Palliative Care, Sydney West Cancer Network, Sydney West Area Health Service;
  • Ms Tania Shelby-James, National Manager Palliative Care Clinical Studies Collaborative (PaCCSC), Dept Palliative & Support Services, Flinders University;
  • Dr Kate Swetenham, Clinical Director, Southern Adelaide Palliative Services;

University of Newcastle Collaborators:

  • Professor Afaf Girgis, Director, Centre for Health Research & Psycho-oncology (CHeRP), Faculty of Health;
  • Professor Isabel Higgins, Professor of Older Person Nursing, Collaborating Centre for Older Person's Care (CCOPC), School of Nursing and Midwifery, Faculty of Health
  • Professor Dimity Pond, Professor of General Practice, School of Medicine and Public Health, Faculty of Health
  • Dr Lisa Barnes, Newcastle Business School, Collaborative Business Research group
  • Dr Margaret Griffiths, Newcastle Business School, Collaborative Business Research group
  • Dr Rob Imre, Political Science and Policy, Newcastle Business School
  • Ms Ros Larkin, Newcastle Business School, Collaborative Business Research group
  • Dr Ashish Malik, Newcastle Business School, Collaborative Business Research group
  • Dr Rebecca Mitchell, Organisational Behaviour and Change, Newcastle Business School

The availability of palliative care and end of life care is an issue of importance for a growing and ageing Australian population. Contemporary palliative care services are undergoing fundamental philosophical and practice changes. This program of research will provide an assessment of the sustainability of palliative care philosophy and practice in its current form with current management practices, an assessment of the impact of the changes being made, and an indication of the likely efficacy of further changes being planned for palliative care, such as its expansion into aged care facilities. The work will highlight differences in palliative care delivery in different jurisdictions of Australia. The work will also highlight issues of organisational configuration, management and staffing as they currently exist and as they are likely to exist in the future. Information and knowledge that can be applied in many other types of organisations, particularly organisations reliant on teams, will be produced.

Within the program of research there are five individual but linked projects:

Project 1: A comparative study of the management and functioning of palliative care teams, with emphasis on organisational capabilities, management levers, behaviours within the teams and organisational configuration

Background: This project is a repeat of a study conducted in 2003/4. The original results, published in 2005, concluded that palliative care teams were highly innovative teams whose chief characteristic was the volume of informal communication that occurred across discipline and practice boundaries. These teams worked in a highly politicised environment in organisations that were configured around the ways the teams needed to operate. Organisational configuration, team management and operational practice were enabled by a commonly held philosophy of palliative care that focused primarily on the psychosocial and existential aspects of the patients' and carers' experiences while efforts were made to keep the patient medically and physically comfortable and patients were kept at the centre of effort.

In contemporary palliative care practice the focus for inpatients appears to have changed. One of the practice changes that is impacting contemporary palliative care is the increasing requirement for the use of three different models of palliative care service delivery; Direct (where specialist palliative care is provided for palliative care inpatients and patients at home), Shared (commonly for patients dying in hospital who are declared to have entered the palliative phase, after which provision of care is shared between specialist palliative care workers and primary care workers), and Consultative (where the palliative care service is brought in to consult on a patient but takes no role in the care of that patient).

Method: Data gathering will use the questions and semi-structured interviews used in 2003 for the original data gathering. Analysis will the use the same abstraction technique as originally used; Carney's Ladder of Abstraction (Miles and Huberman, 1994, p. 92) to define the deep structures of the data. Each site will be treated as an individual case study and analysed as such. Then a cross-case analysis will be produced.

Miles, MB, and Huberman, AM (1994) Qualitative Data Analysis An Expanded Sourcebook. Sage Publications, 2nd ed. London

Outcomes;

  • An understanding of contemporary management and practice of palliative care, in management terms, and an assessment of the direction, scale and impacts of recent changes in its management.
  • Explanation of the functioning of contemporary palliative care teams and organizations using the Model for Palliative Care published in 2005.
  • Comparison of the functioning of contemporary palliative care teams with the results of the 2003/2004 analysis.
  • Comparison of the functioning of contemporary palliative care teams working in Direct, Shared and Consultative models of service.
  • Report/s published.
  • Journal publications
  • Identification of learning that is applicable in other types of organisations.
  • Identification of education or training requirements, opportunities to impact or contribute to policy and opportunities to better manage and improve service delivery.

Project 2: Case Conferencing and Care Planning for palliative care patients and General Practitioners

Background: The study repeats and extends the work of Shelby-James et al (2009); Mitchell, Tieman & Shelby-James (2008); Mitchell & Abernethy (2005); Mitchell, Cherry & Kennedy et al (2005); and Mitchell, Reymond & McGrath (2004). Case conferencing and care planning by GPs for palliative care patients who are at home is funded through Medicare and the study conducted in Adelaide by Shelby-James et al (above) raised a number of important issues regarding the management and operation of this publicly funded process. However, the original study of 2009 was conducted with only a small pool of 17 GPs in southern Adelaide. As well, conversations with the palliative care providers and services have indicated that this form of case conferencing is not widely practiced in the Sydney metropolitan area for a number of reasons, the most common of which are the business models and skill levels of GPs.

Project 2 will be in two parts. The first will interview and survey General Practitioners as to the perception of the utility of case conferencing for palliative care patients that involves the GP. The second will use the results from the first part to guide one of two projects: A broadly based replication of the study conducted by Shelby-James at al (2009) that will occur in New South Wales and Queensland, or an investigation of the reasons why the practice is not adopted and what impact that has on patients and their carers.

Method: Mixed methods studies that use audio-recording and transcription of interviews with GPs and palliative care specialists for part 1, combined with a broader survey of GPs which will be quantitative and qualitative. Part 2, alternative 1 will use audio-recording and transcription of case conferences conducted by General Practitioners for palliative care patients. Analysis is quantitative and qualitative, providing source, content and function of speech and the deep themes from the conferences, respectively. Part 2 alternative 2 will use audio-recording and transcription of interviews with GPs and palliative care specialists for part 1, combined with a broader survey of GPs which will be quantitative and qualitative.

Outcomes:

  • Assessment of the perception of the utility of the Case Conferencing process in the eyes of GPs and palliative care professionals.
  • An understanding of the impact of the commercialisation of healthcare on the delivery of care services that are indicated as being of primary importance to the majority of palliative care patients.
  • Comparison of case conferences conducted in Adelaide in 2008/9 with case conferences conducted in the health services of Hunter/New England, Sydney, Illawarra and the Central Coast.
  • Exploration of the issues raised in the report of the 2008/2009 study of case conferencing and care planning for palliative care patients in Adelaide.
  • Report/s published.
  • Journal publications
  • Identification of learning that is applicable in other types of organisations.
  • Identification of education or training requirements, opportunities to impact or contribute to policy and opportunities to better manage and improve service delivery.

Project 3: Exploration of the ability of palliative care teams to deal successfully with a range of stressors

Background: Extends the research of Hegarty et al (2008), Gillespie et al (2007), Graham et al (2005), White et al (2004), Bonanno (2004), and Pieró et al (2001) on the relationship between palliative care, and some other health care, workers and stress. Palliative care teams inevitably work in stressful contexts that have a number of drivers. These drivers range from the purely existential, such as dealing with death on a frequent basis, through questions of self-efficacy, such as a team's inability to deal with intractable suffering on the part of a patient or family, to the fundamental philosophical and practice changes currently occurring. All palliative care organisations spoken acknowledge that the work can be stressful. However, one of the characteristics of palliative care workforces is their relatively low turnover rate. What is it that enables a relatively stable workforce in a high stress environment that contains multiple stressors that apply at multiple levels?

Method: A mixed methods study that will use surveys to question the causes and impacts of refractory stress in palliative care services. Surveys will contain specific questions and areas for freeform comments, enabling quantitative and qualitative analysis. Surveys and semi-structured interviews will investigate stress and stressors described by team members as individuals and by teams as teams, supplemented with stressors found described in the palliative care and health care literatures, and by other palliative care professionals.

Outcomes:

  • An understanding of how palliative care teams (multidisciplinary and interdisciplinary) deal with the stressors of their occupation and what impact those stressors have on the teams and their members, as well as on the provision of care.
  • An understanding of how recent changes to the philosophy and practice of palliative care are influencing the management of stress and stressors in the working environment.
  • Exploration of predicted and predictive relationships between various team variables, social climate and refractory stress.
  • Results may be used as a basis for understanding how social climate may act as an ameliorator or enhancer of stress, particularly intractable stress. The findings of the study will act as a diagnostic tool for intervention and subsequent education and training as well as human resource implications.
  • Report/s published.
  • Journal publications
  • Identification of learning that is applicable in other types of organisations.
  • Identification of education and training requirements, opportunities to impact or contribute to policy and opportunities to better manage and improve service delivery.

Project 4: Carers' expectations of their interactions with palliative care services

Background: Extends the work of Abernethy et al (2008). There is very little research on what expectations carers have of their interaction with palliative care services during the end of life process of a friend or family member. Yet palliative care services are supposedly designed to understand and as far as possible meet those expectations, sometimes on a daily or hourly basis. As the patient's situation changes, expectations may well also change. This project will investigate how palliative care teams ascertain carers' expectations, what expectations carers come to the process with and how those expectations of experience are integrated with care delivery. The project will pay attention to carers of hospice inpatients and carers of patients in the community.

Method: A mixed methods study that uses surveys to question the experiential expectations of carers. Surveys contain specific questions and areas for freeform comments. Quantitative and qualitative analysis will be undertaken. Focus groups of carers may also be used.

Outcomes:

  • This project will expand a thin body of knowledge on carer expectations of palliative care.
  • Information from this study will act as a guide on organisational development that addresses carer and patient needs as well as employee and organisational capabilities.
  • Report/s published.
  • Journal publications
  • Information from this study will provide some inputs to Project 5.
  • Identification of learning that is applicable in other types of organisations.
  • Identification of education or training requirements, opportunities to impact or contribute to policy and opportunities to better manage and improve service delivery.

Project 5: The use of Experience Based Design in designing the palliative care experience for patients, carers and staff.

Background: Extends the work of Bate ((2000); Bate, Khan and Pye (2000); and Bate and Robert (2007). Professor Paul Bate of University College London has been working with the NHS on implementing Experience Based Design in acute hospitals as a way of better understanding the whole of the requirements of service delivery and then improving that delivery. This project will test the applicability and desirability of this concept in palliative care services and may lead to a pilot in one site, perhaps in 2012. Results from Project 4 will provide some inputs for this project.

Method: A mixed methods study that will use focus groups of palliative care staff interviewed using semi-structured and unstructured interviews, as well as surveys and perhaps focus groups of carers.

Outcomes:

  • Information on the usefulness and practicality of the Experience Based Design process in palliative care and descriptions of potential benefits or drawbacks.
  • Information from the study may be used to pilot an Experience Based Design process at one of the research program's 10 sites.
  • Report/s published.
  • Journal publications
  • Identification of learning that is applicable in other types of organisations.
  • Identification of education or training requirements, opportunities to impact or contribute to policy and opportunities to better manage and improve service delivery.

References for the project backgrounds:

Abernethy, A. P., Currow, D. C., Fazekas, B. S., Luszcz, M. A., Wheeler, J. L., & Kuchibhatla, M. (2008). Specialized palliative care services are associated with improved short- and long-term caregiver outcomes. Support Cancer Care, 16(6), 585-597.

Bate, P. (2000). Changing the culture of a hospital: From hierarchy to networked community. Public Administration, 78(3), 485-512.

Bate, P., Khan, R., & Pye, A. (2000). Towards a culturally sensitive approach to organization restructuring: Where organization design meets organization development. Organization Science, 11(2), 197-211.

Bate, P., & Robert, G. (2007). Toward more user-centric OD: Lessons from the field of experience-based design and a case study. The Journal of Applied Behavioral Science, 43(1), 41-66.

Bonanno, G. (2004). Loss, trauma, and human resilience: Have we underestimated the human capacity to thrive after extremely aversive events? American Psychologist, 59(1), 20-28.

Davison, G. (2005). Innovative practice in the process of patient management in palliative care. University of Western Sydney.

Gillespie, B., Chaboyer, W., & Wallis, M. (2007). Development of a theoretically derived model of resilience through concept analysis. Contemporary Nurse, 25(1/2), 124-135.

Graham, I., Andrewes, T., & Clark, L. (2005). Mutual suffering: A nurse's story of caring for the living as they are dying. International Journal of Nursing Practice, 11(6), 277-285.

Hegarty, M., Breaden, K., Swetehham, K., & Grbich, C. (2008). Refractory Suffering: Capacity Building and Palliative Care Physicians, Final Report.

Shelby-James, T., Currow, D., Butow, P., & Davison, G. (2009). Case Conferencing and Care Planning: an exploratory study.

Mitchell, G., Tieman, J., & Shelby-James, T. (2008). Multidisciplinary care planning and teamwork in primary care. Medical Journal of Australia, 188(8), S61-S64.

Mitchell, G., & Abernethy, A. (2005). A comparison of methodologies from two longitudinal community-based randomized controlled trials of similar interventions in palliative care: What worked and what did not? Journal of Palliative Medicine, 8(6), 1226-1237.

Mitchell, G., Cherry, M., Kennedy, R., Weeden, K., Burridge, L., Clavarino, A., et al. (2005). General practitioner, specialist providers case conferences in palliative care: Lessons learnt from 56 case conferences. Australian Family Physician, 34(5), 389-392.

Mitchell, G., Reymond, E., & McGrath, B. (2004). Palliative care: promoting general practice participation. Medical Journal of Australia, 180(5), 207-208.

Pieró, J., González-Romá, V., Tordera N, & M, M. (2001). Does role stress predict burnout over time among health care professionals? Psychology and Health, 16(5), 511-525.

White, K., Cooper, K., Wilkes, L., & Barbato, M. (2004). The impact of unrelieved patient suffering on palliative care nurses. International Journal of Palliative Nursing, 10(9), 438-444.