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Primary Palliative Care Research in Australia: an overview

Joel Rhee Senior Lecturer in Primary Care School of Public Health and Community

Medicine University of NSW

Overview

•  Structural issues •  Improving community palliative care services •  Greater GP involvement in palliative care

•  Process issues •  Improving care planning •  Better psychological and spiritual care •  Supporting care-givers and family

Theme: Improving community palliative care services

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•  Community PC services •  Griffith Area Palliative Care Service [1] •  Community PC service in Eastern Sydney [2] •  Mid-North Coast NSW [3]

•  Implications •  Mainly descriptive studies of existing community PC services •  Lack of systematic investigation on palliative care delivery

models •  Most service delivery models -> specialist services delivering

care to small subset of the population •  Suggests a need for population-based approach with defined

levels of care [1] Hatton, McDonald, Nancarrow, Fletcher., 2003 [2] Low, Liu, Strutt, Chye., 2001 [3] Phillips, Davidson, Jackson, Kristjanson, Bennett, Daly., 2006

•  After-hours palliative care •  Interviews with 12 GPs, 12 Nurses, 5 managers, 9

terminally ill patients and their carers in urban and rural Victoria [4]

•  A survey of 114 GPs and 52 nurses in urban and rural Victoria [5]

[4] Ciechomski, Tan, O’Connor, Miles, Klein, Schattner., 2009 [5] Tan, O’Connor, Miles, Klein, Schattner., 2009

•  Gaps and priorities in A/H Palliative Care •  Need for uniformity in A/H palliative care services •  Training, remuneration, access problems for GPs

•  Widespread use of A/H locums by urban / semi-rural GPs •  AH support for patients and carers

•  Access to telephone support A/H and better marketing •  Access to medications A/H •  Inter-professional communication (esp between GPs and

nurses) •  Better care planning (written protocols, individual patient

protocols) •  Staff safety issues

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•  Evaluation of AH telephone support service

•  Patterns of use: [6,7] •  Reassurance re: medication enquiries, symptom management e.g.

pain, and anxiety •  Usually in evenings 6-11pm, 5-11pm

•  Benefits community and improves care [8] •  High acceptance by health professionals, GPs, caregivers

[9,10] •  Increases workload (8) [6] Phillips, Davidson, Newton, DiGiacomo., 2008

[7] Aranda, Hayman-White, Devilee, O’Connor, Bence., 2001 [8] Chan, Yong, Ting, Kendrick, DeWitt., 2007 [9] Phillips, Davidson, Newton, DiGiacomo., 2008 [10] Wilkes, Mohan, White, Smith., 2004

•  After hours palliative care – interventions [11] •  Brochure about AH PC (Palliative Care Victoria) •  DVD for health professionals on Advance Care Planning,

use of EPC item numbers and multi-disciplinary care team communication

•  Evaluations •  Qualitative due to insufficient quantitative data •  Positive evaluations generally, but more on the brochure

rather than outcomes •  Lack of applicability of content to all areas

[11] Tan, O’Connor, Miles, Schattner, Klein., 2009 ANJ

Theme: GP involvement in palliative care

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•  Role of GP in palliative care [12] •  GPs value PC •  Patients appreciate GP involvement in PC •  GPs sometimes lack confidence in their abilities •  GPs can deliver effective PC with support and

encouragement from specialist PC services

•  Implications •  Training for GPs in PC, esp experiential training

programs where GPs work with PC teams

[12] Mitchell., 2002

•  GP involvement in PC [13] •  Barriers

•  After-hours PC, esp home visits •  Training and knowledge issues (c.f. a survey in 2005 that

showed only 21.1% of rural GPs in midwest NSW thought that their undergrad pall care training was adequate [14])

•  Remuneration

•  Recommendations •  Training and education programs •  Innovative models of AH care

[13] Rhee, Zwar, Vagholkar, Dennis, Broadbent, Mitchell., 2008 [14] Pereira., 2005

Theme: Improving Care Planning

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•  Communication in care planning •  RCT of case conferencing between GPs and PC services [15]

•  159 patients •  No difference in primary outcome (global QOL score) •  Improvement in some physical well-being items for intervention group

towards death; •  No effect on carer burden •  Limitations: smaller than expected sample size and nature of the case

conference– telephone, not a true multidisciplinary case conference •  Improving AH access to clinical information [16]

•  PC nurses faxed info sheet on unstable patients to GPs on call •  Surveys and feedback from PC nurses and GPs •  Findings: benefits mainly for nurses on call on having information on palm pilots

•  Implication: more research needed

[15] Mitchell, Del Mar, O’Rourke, Clavarino., 2008 [16] Brumley, Fisher, Robinson., 2006

•  Advance Care Planning •  Uptake in patients

•  0.2% and 5% written documents in RACF [17, 18] •  Involvement of GPs and community HPs

•  Not many GPs involved or aware [19] •  ACP programs in NH [20, 21, 22]

•  Study of Respecting Patient Choices program showed reasonable uptake (introduced to 51%, 52% uptake), positive evaluations by staff

•  Study of ‘Let me decide’ program showed reduced hospitalisations and mortality from RACFs

•  Limited by study design and methodology

[17] Nair et al., 2000 [18] Bezinna et al., 2009 [19] Ashby, Wakefield, Beilby., 1995 [20] Blackford, Strickland, Morris., 2007 [21] Silverster et al., 2006 [22] Caplan, Meller, et al., 2006

•  Advance Care Planning •  Conceptual framework – exploration of ACP in

primary care •  Qualitative study in RACF where ACP program was

implemented: nurse as a ‘broker’ in ACP [23] •  Different conceptualisations of ACP process

•  Esp role of documentation, and how ACPs should be implemented [24]

[23] Jeong, Higgins, McMillan., 2007 [24] Rhee, Zwar, Kemp., in press 2011

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Theme: Better psychological / spiritual care

•  Exploration of difficulties in psychological / spiritual care of patients [25]

•  Concerns about effect on patients’ morale •  Concerns about the role of a GP in discussing religion and

spirituality •  Leaving it up to the patient to raise emotional and spiritual

issues

•  Framework to address patient’s spiritual needs [26] 1.  Creating a holding environment 2.  Spiritual assessment 3.  Managing fear and providing genuine compassion and

humanity [25] Kelly et al., 2007 [26] Mitchell, Murray, Wilson, Hutch, Meredith., 2010

Theme: Supporting care-givers and family

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•  Needs of care-givers and family [27-31] •  Qualitative studies of care-givers and HPs, literature reviews

•  Involved in symptom mgt and medications, assisting with ADLs, household tasks

•  Impact on health, emotions, relationships, work, schedule, anxiety, energy; but also a positive, rewarding experience

•  Complexities of dealing with patient and care-givers with different views, preferences and needs, and with different family dynamics

•  Need for emotional support, information, advice, in-home respite, help with household tasks, social and financial support

•  Current system fails to recognise unmet needs in people who appear to be coping

[27] Zapart, Kenny, Hall, Servis, Wiley., 2007 [28] Aranda, Hayman-White., 2001 [29] Hudson, Aranda, Kristjanson., 2004 [30] Grbich, Parker, Maddocks., 2001 [31] Aoun, Kristjanson, Currow, Hudson., 2005

•  Interventions •  GP Caregiver Needs Toolkit [32]

•  RCT of 520 patients with advanced cancer •  Intervention consists of:

•  Needs assessment tool for caregivers to complete and give to GPs

•  Resources kit to help GPs to address these needs

[32] Mitchell, Girgis, Jiwa, Sibbritt, Burridge., 2010

Gaps in research and directions for further research

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1. Improving community palliative care services •  Need for more high quality evidence to influence

policy –  Models of palliative care / community PC services / AH care

and their effectiveness –  Outcomes data (esp at patient level) on community PC, and

after hours PC services

2. Involvement of GPs in PC •  Further research into AH PC by GPs, and role of locum GPs •  Development and testing of interventions to address AH care

issues, confidence, knowledge and skills issues

3. Care Planning •  Lack of outcomes data / patient-level data for the

effectiveness of community-based ACP and NH-based ACP

•  Research into ACP in the primary care setting rather than as opposed to hospital-based ACP

•  Need for more research into multidisciplinary teleconferencing drawing on lessons learnt

4. Supporting caregivers and families •  We have a reasonable understanding of their needs •  Development and trials of effective interventions to address the

various identified needs •  Multidisciplinary focus

Thank you!