6 October 2017 Dr Ayman Shenouda A focus on palliative care There was some great discussion generated from my recent blog on frailty and ICU outcomes. The importance of patient empowerment and preference towards care in the community resonated with many. Palliative care is an important extension to that discussion. This is an area, which we know is expanding with demand which is set to rise alongside disease rates and an ageing population. Despite a stronger national focus on palliative care, the patient’s preference for community care is not translating into policy. Palliative care should improve the quality of life of patients with an active, progressive disease that has little or no prospect of a cure.[1] More and more we’re seeing patients’ preference for palliative care in the home. We know that 70 percent of Australians would rather die at home than in hospital.[2] Whatever the choice, the model of care must enable access to all patients facing a life-limiting illness. We know that those who would get the most benefit from palliative care often accessed it too late.[3] There is still so much in this area that we need to fix. I think a good place to start is ensuring our patients’ preferences around dying at home. Access and choice In finding a way through the system to facilitate choice for more community-level care we are still a long way from enabling equitable access. Early access to palliative care services is an internationally recognised policy goal.[4] However, it is clear that our shared policy goal is not being met in Australia when it comes to access and choice. This highlights our first policy failure, which is around equity in access which of course stretches beyond just palliative care and can be persistent throughout life for some most in need. Where you live and your socioeconomic status has some bearing on choice in terms of preference of setting in palliative care. AIHW 2014-15 data released early in the year showed that there is a higher proportion of palliative care-related hospitalisations (22.4%) in the lowest socioeconomic status areas. The rate of palliative care-related public hospitalisations was also highest for those living in these areas (30.9 per 10,000 population). Conversely, the rate of public palliative care-related hospitalisations was lowest for those living in the highest socioeconomic status areas (14.5 per 10,000).[5] Funding and policy context Funding and policy context really matters here. This is because funding models clearly influence service provision and the development of palliative care services. Funding for palliative care involves a mixed system of public, private and charitable players. A mismatch between policy goals and palliative care funding mechanisms can compromise our shared aim in addressing need. [6] This leads to the next policy failure which is around service planning and problematic due to care being split across levels of government. Service planning relies on quality data and this is a key gap in palliative care. The sole Physician MBS item numbers map only a very small sample of service provision which really limits service planning, particularly in enabling patient choice to die at home.[7] This palliative medicine focus, while important, is limiting. It means that what is actually occurring at the community level in terms of GP-led palliative care is less likely to inform policy decisions. The undefined role of the general practitioner in palliative care across a range of settings is a contributing factor. While we are seeing more and more GPs with special clinical interests in palliative care meeting these needs in primary rather than secondary care, the system just doesn’t see them. In the absence of item numbers, how can GP-led palliative care ever be fully measured? GPs play a critical role here. Chronic disease management and home visit item numbers are not sufficient in terms of planning for future demand or in capturing the complexity and non-clinical time involved in providing this care. The only available BEACH data shows that about 1 in 1,000 GP encounters in 2014-15 were palliative care-related, which equates to around 5 encounters per 1,000 population. This is most certainly an underestimate of the actual numbers given services delivered by GPs cannot be established from Medicare data. Service integration Another key issue is that palliative care services have many individual providers both public and private. It is clear we need to get better at ensuring a more seamless service transition for the patient and family. Service integration prioritising multidisciplinary care at the local level relies on flexibility to facilitate the integration of funding streams. In rural areas, this can be particularly challenging even when there is a strong commitment by local service providers. Service integration at the primary care level remains a key policy failing and much more effort is required to provide the necessary supports to enable a more integrated system. General practice is the gateway for patients to the broader health system. We need new expanded funding measures specifically designed to enable service integration for palliative care in the community. Efficiencies can be found in community-based care, yet there is a reluctance to put the system supports in place to make it happen. The recent $8.3 million announced in the Federal Budget will help boost the role that the PHNs have in coordinating end-of-life care. It is understood that the funding will support the provision of a facilitator which may help take the pressure off GP practices who are fulfilling much of this role already for their patients.[8] But much more needs to be done in the area of facilitating greater access to GP-led palliative care services. Building local capacity to address increasing and future demand will require a significantly larger investment than we’ve seen to date. Capturing broader perspectives We know that demand for palliative care in Australia will grow. This, in turn, requires an expansion of home and community care in meeting patient preference. An important policy perspective needs to be captured from those receiving care and their caregivers. This will help us work through further how we can improve services to support dying at home. A final additional focus therefore needs to be on the patient and caregiver if we are going to get this policy right. A qualitative study of patient and family caregiver experiences of Hospice at Home care provides insights. It states that we need to focus on additional supports for older people and those living alone, recognised as high risk of being unable to receive this type of support. More targeted supports for older caregivers who are at a higher risk of caregiver burden are also required. The policy goal here has to be around promoting their quality of life with an emphasis on training for the full care team in the ethos of palliative care to ensure holistic care.[9] Where to now? We know that GP-led community palliative care needs to be prioritised in policy. Yet there remains plenty of barriers limiting service expansion to facilitate this care from within the community and across settings. Ensuring our system is more responsive to patient choice is of course what needs to drive all policy decisions. We know in this case that it is often a preference for care outside of the hospital setting. But when our system automatically preferences to tertiary care, it makes it harder to facilitate that care. This is unless of course you have well established and integrated service links and a significant local community commitment to make it work. There’s a pattern emerging here and it’s about prioritising patient-centred healthcare in primary care. Access enabling choice, service planning and data capture, integration prioritising GP-led care and encompassing the patient and caregiver perspectives would bring us closer to a more responsive palliative care service system. [1] AIHW. Web Report. Palliative care services in Australia. Last updated 24 May 2017. Available at: https://www.aihw.gov.au/reports/palliative-care-services/palliative-care-services-in-australia/contents/palliative-care-in-general-practice [2] Palliative Care Australia. National health statistics highlight inequitable access to palliative care. 24 May 2017. Available at: http://palliativecare.org.au/palliative-matters/national-health-statistics/ [3] Parliament of Victoria. Legislative Council Legal and Social Issues Committee. Inquiry into end of life choices Final Report. June 2016 PP No 174, Session 2014-16 (Document 1 of 2) ISBN 978 1 925458 38 1 (print version) 978 1 925458 39 8 (PDF version). Available at: https://www.parliament.vic.gov.au/lsic/article/2611 [4] Connor SR and Bermedo MCS. Global atlas of palliative care at the end of life (Worldwide palliative care alliance, World Health Organization), 2014, http://www.who.int/ nmh/Global_Atlas_of_Palliative_Care.pdf [5] AIHW, op.cit. Profile of palliative care related hospitalisations. [6] Groeneveld EI, Cassel JB, Bausewein C, et al. Funding models in palliative care: Lessons from international experience. McCaffrey N, Cassel JB, Coast J, eds. Palliative Medicine. 2017;31(4):296-305. doi:10.1177/0269216316689015. [7] Australian Institute of Health and Welfare 2014. Palliative care services in Australia 2014. Cat. no. HWI 128. Canberra: AIHW. [8] Palliative Care Australia. Budget offers new support to coordinate end-of-life care. 10 May 2017. Available at: http://palliativecare.org.au/palliative-matters/budget-phns/ [9] Jack B.A., Mitchell T.K., Cope L.C. & O'Brien M.R. (2016) Supporting older people with cancer and life-limiting conditions dying at home: a qualitative study of patient and family caregiver experiences of Hospice at Home care. Journal of Advanced Nursing 72(9), 2162–2172. doi: 10.1111/jan.12983
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Changing our healthcare system starts in the consulting room 15 September 2017 Dr Ayman Shenouda Empowerment There’s been a lot of discussion around empowering the patient more in their treatment decisions. That we need to shift our focus toward a system that empowers and facilitates choice. But undermining a shared decision-making model – one which has room to provide for both clinical choice and patient choice – is our healthcare system. We have a system which is based on a disease-based model of care which leaves little room to take into account the context of the patient's illness. A system that can allow us to refocus on the patient-centered, personal and unique experience of “illness” must be prioritised.[1] Patient experience in the health system is so vitally important and has to be valued. For me, changing our healthcare system really starts in the consulting room. It’s that doctor-patient relationship that I really value. And this often goes unnoticed by our decision makers – but it is here where lasting change can be realised. Discussions in general practice are of great value for helping patients take charge of their own health. A more focussed effort here not only helps to improve health but will support quality reform measures which can reduce costs. Research shows us the benefits of a shared decision-making model approach. These include knowledge gain by patients, more confidence in decisions, and more active patient involvement. Studies have shown that, in many cases, informed patients elect for more conservative treatment options.[2] Preparing for the challenges ahead The health system cannot cope with what it is facing. Health care demand on the system is reaching crisis point with public spending at unsustainable levels. Empowering patients is most certainly part of the solution if we are ever going to meet rising demand with an ageing population. But to do this, empowerment needs to be met with a system that can facilitate choice. Recently I attended an event organised by the RACGP NSW Faculty delivered by an ICU Physician who led an impressive discussion around frailty. He spoke about the elderly intensive care unit (ICU) patient and poor outcomes. More specifically, the need to identify frail patients at high risk of poor outcomes and plan accordingly. We were brought across a study which investigated the effects of frailty on clinical outcomes of patients in an ICU. It used a frailty index (FI) which was derived from comprehensive geriatric assessment parameters. It found that the use of a FI could be used as a predictor for the evaluation of elderly patients’ clinical outcomes in ICUs.[3] Another study found frailty is common in patients admitted to ICU and is associated with worsened outcomes. It recommended that this vulnerable ICU population should act as the impetus for investigating and implementing appropriate care plans.[4] Identifying patients at high risk of poor outcomes is key here. But the system cannot identify what frail means, nor does it empower GP decision making at the cold face. Applying the FI is one way to ensure we’re not placing patients where there is no real benefit. But the culture within hospitals makes it hard to implement this tool. Enabling end-of-life discussions particularly at a point when there is a crisis situation is also a barrier. Planning for end of life and putting in place an Advance Care Plan early is essential. GPs are very good at this. It should be undertaken as part of the Over-75 Health Check. and helps equip the patient, and their family, well for what lies ahead. It’s a good time to talk to the patient about prevention, maintaining functionality, minimising pain or complexity of disease as well as strategies to address them. It is also time to start the discussion around being frail and their expectations around that. High price for poor outcomes We know that more than 30 percent of patients admitted to intensive care units never make it out. Those that do rarely make it back to their own home. It costs around $4,000 per night in ICU . This spend can be better utilised if redirected to support patients in their own home. I know from my own elderly patients’ experience that it is often hard for the patient not to end up in ICU. The system makes it hard to facilitate this care in the community. And it’s hard to take on the system during a crisis. It takes a strong family who is across their loved one's wishes. Care in the community I recall consulting at my surgery in The Rock some years ago and receiving an urgent phone call. It was the daughter of my 82-year-old patient and she needed my help in preventing the transfer of her mother from Wagga Base to Sydney. She told me the specialist was transferring her and that the family did not want her to go through this and that her mum didn’t want this either. They understood that their mum was in a critical condition but wanted her close to home. I immediately made the call to the Specialist Respiratory Physician who explained she had a flouting clot in her pulmonary artery and needed an embolectomy and a filter in her IVC. The specialist had already discussed her case with the Cardiothoracic Surgeon in Sydney and organised the transfer. I explained that the family had called and that this was not what my patient, nor her family, wanted. I also explained that I was prepared to look after her in the community. Fortunately, the specialist at Wagga was comfortable provided she sign a discharge against medical advice. This patient lived for a further five years. She was able to attend her grandson’s wedding in Sydney two years before she died peacefully at her home with her family around her. A testament to her strength and also that of her family. They ensured she stayed in Wagga to receive care an appropriate level of care in the community. They insisted that she was not transferred to a Sydney hospital where she was likely to end up in ICU and never to come home. Making the system work How can we ensure that the system can default to enable care in the community, rather than automatically preference for tertiary care? While there exists a frailty tool there’s reluctance to use it. There’s plenty of GPs happy to care for their patients in the community if that’s their choice. But rarely will the patient’s GP be consulted at that critical stage. There is also limited funding to facilitate this care. A reality check is well-overdue in terms of outcomes particularly in dealing with the frail. We’re missing the point on where to focus care. This needs to be where there is the greater need and where the efficiencies can be found. And this is not on a system which is disease focussed and already crippled by expensive treatments. To prevent waste, more realistic expectations around outcomes can be achieved through person centred care enabling empowerment. One of the strengths of general practice is the unique relationship between patients and their GPs. Patient centred communication and shared decision making is the foundation on which our health system can be remodelled. Let’s prioritise it. [1] Green AR, Carrillo JE, Betancourt JR. Why the disease-based model of medicine fails our patients. Western Journal of Medicine. 2002;176(2):141-143. [2] Stacey D, Bennett C, Barry M, Col N, Eden K, Holmes-Rovner, M Llewellyn-Thomas, H Lyddiatt A, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews. 2011;as well as(10):CD001431. [3] Kizilarslanoglu, M.C., Civelek, R., Kilic, M.K. et al. Is frailty a prognostic factor for critically ill elderly patients? Aging Clin Exp Res (2017) 29: 247. https://doi.org/10.1007/s40520-016-0557-y [4] Muscedere J, Waters B, Varambally A, et al. The impact of frailty on intensive care unit outcomes: a systematic review and meta-analysis. Intensive Care Medicine (2017). 43: 1105.https://doi.org/10.1007/s00134-017-4867-0 5 August 2017 Dr Ayman Shenouda Often a really good policy solution will in turn place more pressure on a part of the health system it relies. This isn’t necessarily a bad thing and is usually indicative of good policy spend. It is sometimes an outcome of optimal policy coverage as is the case for disease screening measures. The National Bowel Cancer Screening program, introduced in 2006, is an example of a policy working well. We know that one in 12 Australians will develop bowel cancer by the age of 85 which makes it the second most common cause of cancer-related death in Australia after lung cancer. But, if detected and treated early the cure rate is around 90% which makes policy intervention through prevention and in this case, through screening measures, so vitally important. [i] The is a great policy intervention which we’ve seen expanded under successive governments with broad coverage now currently available to Australians aged 50, 55, 60,64, 70, 72 and 74. Once fully implemented by 2020, all Australians aged 50 to 74 will be able to be screened every two years.[ii] But as a result of this policy, we’ve seen demand increase for lower gastrointestinal endoscopies. This growth in demand means there is a need for the endoscopic workforce in Australia to be well planned in order to cope with future demand associated with expanded cancer screening, particularly with an ageing population. Service solutions to address current demand including nurse endoscopists are now being rolled out in Queensland and Victoria. But is this the right workforce response for Australia or is it more of a temporary fix to a growing system issue? Here’s the policy background to the issue. The policy response to limited endoscopy capacity a few years ago saw the now defunct Health Workforce Australia (HWA) invest in a project to train nurses to perform endoscopic procedures. Expanding the scope of practice of health professionals was a typical policy response being keenly pursued at that time by HWA. This particular decision though saw unprecedented action with a policy preference to train non-medical endoscopists and build capacity from within nursing. At the time, the medical press reported that doctors were calling for a moratorium on nurse endoscopy.[iii] From a resource perspective, it is important to also note that this was a decision undertaken within the broader context of increased medical graduates coming through and claims of impending oversupply. The Advanced Practice in Endoscopy Nursing (APEN) program was modelled on approaches elsewhere including in the UK where the nurse endoscopist was well established. Although nurse endoscopy training and delivery of endoscopic services is not a new policy response: the first report of nurse endoscopy in the US was more than 35 years ago for flexible sigmoidoscopy.[iv] But I think it is important to work through policy alternatives for Australia particularly if one solution has limitations both in terms of efficacy and coverage. The University of Wollongong evaluation of the HWA-funded APEN sub-project in 2014 highlighted some key points in terms of the validity of a nurse-led model as a workforce solution. Firstly, it stated that one of the main drivers for the program was the need to respond to growing demand for lower gastrointestinal endoscopies arising from bowel screening. However, it also stated that only about a quarter of same-day colonoscopies are performed in public hospitals. A key detail that severely limits the ability of nurse endoscopists to meet this growing demand. The evaluation also stated that given full implementation was not achieved, that relative advantage in terms of effectiveness and cost effectiveness of the model could not be evaluated and could only be measured after trainees were qualified and working at full capacity. [v] The Australian Medical Association of Queensland (AMAQ) in commenting on the Queensland roll out of nurse model to Cairns and Townsville, stated that medical endoscopists were more cost effective than nurses as surgery could be performed at the time of procedure.[vi] Cost-effectiveness of the nurse-led model as a workforce solution has also been challenged in a study published in the World Journal of Gastroenterology in 2015. The study examined the available evidence on safety, competency and cost-effectiveness of nursing staff providing gastrointestinal (GI) endoscopy services. The study concluded that the empirical evidence that supports non-physician endoscopists is limited to strictly supervised roles in larger metropolitan settings and mainly flexible sigmoidoscopy and upper endoscopy for asymptomatic or low complexity patients. [vii] This same study also stated that contrary to general beliefs, endoscopic services provided by nurse endoscopists are not more cost effective compared to standard service models due largely to the increased need for subsequent endoscopies, specialist follow-up and primary care consultations. It stated that studies measuring cognitive competency were limited and providing endoscopic services is more than mastering the technical skills required to safely advance the scope. Further, that making clinical decisions in the context of the patient’s full clinical picture is critical to delivering efficient and meaningful services.[viii] In finding an effective solution, the most obvious question for me in terms of utilising the available workforce is around why we are not looking to general practice to address excess demand? Some of the pressure placed on endoscopy units in managing this increased demand can certainly be addressed by general practitioners. General practice offers a particularly viable solution for rural communities in endoscopy. Keeping trained procedural GPs in rural areas should be made a priority and this is a good example of where support is needed to sustain local solutions where rural GPs fill a service gap like this. Access to diagnostic endoscopy is limited in rural and remote areas and service expansion by GPs provides significant patient benefits in terms of time and costs. While savings including around reduced costly patient transfers are obvious to most, the investment in GP procedural practice where it offers a sustainable service model should be sufficient for policy makers. It would help to reduce the demand placed on regional tertiary services and could help make GP procedural practice more viable in the smaller towns. We know that rural GP proceduralists must be supported to consolidate their skills in the communities they serve and this is one service solution which can help realise this aim. It is a workforce solution that needs to be considered. [i] Cancer Council Australia. Position Statement. Bowel Cancer. Available from: http://www.cancer.org.au/policy-and-advocacy/position-statements/bowel-cancer.html [ii] Ibid. [iii] Australian Doctor. Doctors call for moratorium on nurse endoscopy. 30 January, 2015. Available from: https://www.australiandoctor.com.au/news/latest-news/nurses-expand-scope-into-endoscopy [iv] Spencer RJ, Ready RL. Utilization of nurse endoscopists for sigmoidoscopic examinations. Dis Colon Rectum. 1977;20:94–96. Available from: https://www.ncbi.nlm.nih.gov/pubmed/844404 [v] Thompson C, Williams K, Morris D, Lago L, Quinsey K, Kobel C, Andersen P, Eckermann S, Gordon R and Masso (2014) HWA Expanded Scopes of Practice Program Evaluation: Advanced Practice in Endoscopy Nursing Sub-Project Final Report. Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong. Available from: http://ro.uow.edu.au/cgi/viewcontent.cgi?article=1384&context=ahsri [vi] ABC News. More gastroenterologists needed rather than using nurse endoscopists in hsopitals, AMAQ says. 18 Apr 2016. Available from: http://www.abc.net.au/news/2016-04-18/amaq-more-gastroenterologists-rather-than-nurse-endoscopists-qld/7336202 [vii] Stephens M, Hourigan LF, Appleyard M, et al. Non-physician endoscopists: A systematic review. World Journal of Gastroenterology : WJG. 2015;21(16):5056-5071. doi:10.3748/wjg.v21.i16.5056. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4408481/ [viii] Ibid. A big part of securing the next generation of rural GPs is around ensuring there remains a positive focus on general practice.
Rural practice is challenging which in turn makes it very rewarding, enabling you to develop a breadth of skills to build resilience in addressing need. Providing that insight for future doctors in a supportive way during those early learning years is so vitally important. Sitting with a registrar recently, I was surprised to learn that he considered himself a rural generalist, and not a rural GP. This is despite the fact that he was training to a curriculum which is general practice: the endpoint in training for a rural generalist is of course a general practice Fellowship. Let’s be very clear: rural generalists are rural GPs. General practitioners are generalists by definition. The term ‘rural generalist’ describes a rural general practitioner working to the full scope of their practice with skill sets that are informed by the needs of the community they serve. These skill sets may encompass both advanced procedural and non-procedural skills working across primary and secondary care contexts with an emphasis on emergency medicine. It’s about ensuring the right skill mix against demand. The Federal Assistant Minister for Health, Dr David Gillespie MP, certainly knows this requirement well and his own definition is fitting: “A rural generalist is a doctor who’s trained as a general practitioner but has extra skills so that they can operate in a hospital setting as well as a community setting. That involves not just being a jack of all trades, but being a well-qualified doctor who can cope with the extra problems, clinical, public health, and hospital skills that you need to look after a regional town.”[1] It is the context that matters most and is key to getting health rural workforce policy right. The general (core) and advanced (specific) skills required in addressing patient need depend on the health needs and context of the community. That is why it is important we align training investment to service need. In developing a rural generalist pathway nationally, this, therefore, must also be broad. We need a national pathway that equips general practitioners with a full range of competencies enabling them to deliver patient care closer to home in the primary and secondary care contexts. We know that developing skills around the ongoing care considerations are the areas that best serve the community. We also know that dedicated and clear pathways for rural GPs to acquire advanced skills and utilise them in a way that is valued and recognised are important workforce factors. Supportive strategies like these are vital in attracting and retaining a skilled rural workforce that is responsive to need. Most of all it’s about valuing the contribution to the healthcare system of quality general practice and its essential and enduring role in supporting rural communities. [1] Gillespie transcript. 29 March 2017. RDAA Poli Breakfast. Dr David Gillespie MP Federal Assistant Minister for Health. Canberra. |
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