Palliative Care Queensland Reply to Queensland Government Response to Health & Community Services Committee Report No 22: Palliative and Community

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1 Palliative Care Queensland Reply to Queensland Government Response to Health & Community Services Committee Report No 22: Palliative and Community Care in Queensland 8 October 2013

2 Recommendation hour state wide telephone service. It is assumed that the 24 hour state wide telephone service proposed in this recommendation is consumer focussed and would be designed to provide telephone based information and support regarding palliative care and end of life to consumers. However if this proposed state wide telephone service also includes the provision of information and support to health professionals, such a service would need to be staffed by specialist palliative care nurses who have access to palliative care medical specialists. With regard to the Palliative Care Information Service, the name of this project was changed to the Palliative Care Helpline several years ago. This project, funded by the Queensland Government at a cost of approximately $200,000 annually since 2001, has been managed by Karuna Hospice Service since its inception. The Palliative Care Helpline is staffed by one full time equivalent staff member with a qualification in either nursing, social work or counselling. The service receives approximately five to ten calls per day, the majority of which are from consumers seeking information regarding local palliative care services. The Helpline has not provided a secondary connection to link GPs via telephone to a palliative care medical specialist at a participating hospital for a number of years, and is not generally used by health care professionals seeking specialist clinical information to support the care of patients. Local area specialist palliative care services currently provide telephone based clinical support to generalist health care professionals who require information to better manage dying patients with complex symptoms. The Helpline has not been formally evaluated since it was a pilot program in At that time, an evaluation conducted by Siggins-Miller recommended to the Queensland Government that the operating hours of the helpline be reduced from 24 hours seven days per week to nine to five or regular business hours. This recommendation was made largely as a result of low call numbers and minimal uptake by the community. Since that time, consumer awareness of the service has not grown, and usage of the service has not grown significantly. Palliative Care Queensland recommends that: an immediate evaluation of this service be conducted to determine its future role and function within the palliative care sector, and regular reports at least three monthly of call statistics be made available to the wider palliative care community and published on the Palliative care Helpline website. 2

3 Recommendation 3. Children s Hospice Palliative Care Queensland congratulates the Queensland and Commonwealth Governments for endorsing and providing ongoing funding to support the development of Hummingbird House, a Children s Hospice for Queensland. There is a clear and demonstrated need for a children s hospice and respite facility in Queensland. Once operational, Hummingbird House will serve to support the current and future care of hundreds of terminally ill children and adolescents throughout Queensland each year, as well as supporting families and carers with much needed respite and ancillary support. Hummingbird House will provide an opportunity for the healthcare sector in Queensland to showcase its capacity to provide world class services, and will serve as a centre of excellence for the delivery of paediatric palliative care in Queensland. Palliative Care Queensland commends the work of Queensland Kids in bringing together key stakeholders from both the public and private sectors to demonstrate a complex collaboration that will underpin the future implementation of this valuable and much needed project. 3

4 Recommendation 17. Specialist palliative care services role and resources Palliative Care Queensland believes that all Queenslanders should have access to specialist palliative care services when required. Various expert witnesses confirmed during the Parliamentary Inquiry that access to specialist palliative care services across Queensland is inconsistent and does not meet demand. Access is most limited for Queenslanders living in rural and remote areas, those with non-cancer illnesses and those living in residential aged care facilities. Evidence also suggested that the demand for specialist palliative care services in Queensland grows significantly each year, while funding to services has not generally increased. In some regions, funding, services and the numbers of specialist palliative care clinicians have been decreased by various Hospital and Health Service Boards compromising the delivery of best practice models of palliative care. This includes the removal of after hours specialist nurse support within the Gladstone region, an initial decrease in specialist medical FTE in Toowoomba and loss of consultant FTE in Ipswich. Given the current pressure on Hospital and Health Services to reduce costs and increase efficiency across each district, Palliative Care Queensland does not accept the premise that they are in the best position to understand and respond appropriately to the needs of their respective community with regard to specialist palliative care. Traditionally specialist palliative care has been poorly funded not only relative to acute services but also to other sub-acute ones such as rehabilitation. This pattern of funding seems likely to be continued by Hospital and Health Services unless the Government recommends positive discrimination in favour of palliative care. This change in emphasis would be on the basis that the specialist palliative care services would support patients in a less acute setting. Only Government recommendations will have the necessary impact. Palliative Care Queensland recommends all that service agreements between the System Manager and Hospital and Health Services include a requirement for an adequately funded specialist palliative care service with the capacity to ensure the delivery of quality end of life care to all dying patients and families, whether in the community or hospital. Further, Palliative Care Queensland recommends that Queensland Health mandates the following in relation to the provision of end of life care by all Hospital and Health Services in Queensland: End of life care is provided in accordance with the National Standards for Providing Palliative Care to all Australians; Service planning and staffing is consistent with the Palliative Care Module of the Queensland Clinical Services Capability Framework; All providers of specialist palliative care participate in the National Standards Assessment Program (NSAP), and All providers of specialist palliative care participate in the Palliative Care Outcomes Collaboration (PCOC), collecting ongoing data in relation to outcomes. 4

5 Recommendation 29. Public awareness advance care planning Palliative Care Queensland supports the Governments recommendations about Advanced Care Planning and the Respecting Patient Choices Programme. However, it believes that the Queensland Government and Hospital and Health Service Boards have a responsibility to raise awareness about End of Life Care Planning and Advanced Health Directives within Queensland. Health economic research data demonstrates that awareness raising, particularly around advance care planning, leads to better outcomes for patients and has the potential to reduce costs in the acute care sector. Reducing costs in the last year of life through the provision of more appropriate and less futile care will enable the health system in Queensland to be more sustainable in the long term. 5

6 Recommendation 32. State wide palliative care strategy & Recommendation 33. State wide palliative care strategy key elements Palliative Care Queensland remains a strong and vocal advocate for the development and implementation of a population based state wide palliative care service plan. Although we are heartened that the Queensland Government has accepted the recommendation to develop a strategy using rigorous methodology that will consider the available evidence during the development phase, we believe that a greater commitment to this process is required. Although some work was done by the former State Government to map services and to develop a suitable model for providing palliative care, little evidence is available to help determine where palliative care services should be provided across Queensland, and what these services should look like. For this reason, Palliative Care Queensland believes that an urgent Population Study by the Centre for Palliative Care Research and Education is required in order to establish a robust methodology for assessing palliative care needs based on population demographics. Such a model should be provided to each Hospital and Health Service and to Purchasing Branch to assist in determining an appropriate level of Palliative Care Activity to be provided and purchased in each Hospital and Health Service. Only after an appropriate population study has been conducted would Queensland Health be in a position to develop and implement a state wide service plan for palliative care in Queensland. Such a plan would incorporate the development and utilisation of an effective and efficient model for service provision together with equitable funding of palliative care. The development process must utilise robust tools to collect data and measure patient outcomes, ensuring that high quality care, based on need, is provided to all Queenslanders when required in the last twelve months of life. 6