Strengthening palliative care: Policy and strategic directions

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1 Strengthening palliative care: Policy and strategic directions Second year report The Victorian Government s vision for how people dealing with a life-threatening illness, and their carers, will be supported is outlined in Strengthening palliative care: Policy and strategic directions (the policy). The policy is a four-year $34.4 million plan to provide comprehensive and coordinated palliative care services so all Victorians live as well as possible until they die in their place of choice. The policy has seven strategic directions to improve the care of Victorians with a life-threatening illness, their families and carers: 1. informing and involving clients and carers 2. caring for carers 3. working together to ensure people die in their place of choice 4. providing specialist care when and where it is needed 5. coordinating care across settings 6. providing quality care supported by evidence 7. ensuring support from communities. This report examines the impact of the policy during its second year of implementation. The report focuses on how the palliative care sector is supporting people to die in their place of choice. This is a particularly important policy objective as it empowers people to make choices at a time in their life when their ability to make choices is often limited. Positive progress has been made. An increased percentage of community palliative care clients died in their preferred place of choice in (64 per cent) than in (61 per cent). Also in a lower per cent of palliative care clients died while in hospital (65 per cent) compared to (69 per cent). This report is divided into four topic areas that demonstrate initiatives which have been implemented across the palliative care sector to support people to die in their place of choice: identifying client need fostering innovation coordinating care ensuring equitable access. Identifying client need The needs of people with a life-threatening illness are time-critical and can change rapidly. To keep people in their place of choice palliative care services and other health care providers need to respond quickly and appropriately to people s changing needs. The Victorian paediatric palliative care program developing an information and referral website for families Involving clients and carers in the planning and delivery of care through advance care planning Using interdisciplinary teams to identify client care needs.

2 Providing information that is tailored to the needs of clients and carers When a child is diagnosed with a life-threatening condition, the child and their family s world is significantly disrupted. Ready access to reliable information and resources can help these families to navigate the myriad of challenges associated with the diagnosis. The Victorian paediatric palliative care program has been funded to develop a web-based information and referral one-stop shop to connect parents with current services and provide a contemporary understanding of paediatric palliative care. Actively involving clients and carers in the planning and delivery of care Advance care planning is the process of planning for a person's future health and personal care in the event that the person is unable to make decisions or communicate. Palliative care services reported that 36 per cent of clients had an advance care plan or had their wishes for end of life documented and 58 per cent of these clients had their wishes followed. Recording a person s beliefs, values and preferences assists people to receive care in the place of their choice and minimise unnecessary treatment. When palliative care services involve clients and carers in their care planning, better outcomes are achieved when clients face complex situations that could normally prevent a client being able to remain in their preferred place. Client care needs are met by an interdisciplinary team Interdisciplinary teams ensure that the full range of a client s palliative care needs are identified and addressed. The Gippsland region is using strategies, such as team meetings, primary consultation clinics and secondary phone consultations, to identify clients needs early. The Gippsland region found that the most common symptoms/issues faced by clients were pain (47 per cent), psychological needs (34 per cent) and social needs (30 per cent). With regular reviews the care plan remained current and reflected the client s wishes. Fostering innovation As client s needs change and different client groups access palliative care, the sector needs to respond in innovative ways to help the client to receive care in their preferred place. Establishment of an Aboriginal palliative care collaborative and Aboriginal message stick ceremony Introduction of innovative research projects to health care professionals Introduction of video links and telehealth facilities Building clinical competence in caring for Aboriginal people Although significant progress has been made in improving access to palliative care, Aboriginal people are still underrepresented. Some Aboriginal people mistrust mainstream services and worry that their cultural needs will not be met. It is therefore imperative that palliative care services are culturally competent in caring for Aboriginal people in order to ensure that more Aboriginal people have their end-of-life care wishes met and receive care in their place of choice. Funding from the Victorian government has established an Aboriginal palliative care collaborative to provide clinical leadership, promote partnerships between Aboriginal and palliative care organisations, and support the work of the Victorian Aboriginal Palliative Care Program. This initiative will build the evidence base so Aboriginal people can die in their place of choice. In 2013 representatives of Aboriginal community health organisations handed over message sticks to the regional palliative care consortia. The historic ceremony symbolised the commitment to strengthening relationships between palliative care services and Aboriginal people. The message sticks signify the importance in coming together, sharing together and working together to meet the cultural needs of Aboriginal people who are on a palliative care journey. Training, education and workforce development Page 2

3 Community of practice forums provide an opportunity for workers to further develop their palliative care practice. In November 2012 the community of practice forum introduced 90 health care professionals to a range of innovative evidence-based research projects overseen by the Palliative Care Clinical Network. These projects included: clinical tools to assist with palliative care provision strategies to implement end-of-life care pathways bereavement support standards for palliative care services pain clinical indicators for palliative care. Familiarising health care professionals with the latest evidence-based research helps people with life limiting illness to be cared for appropriately and to be supported and die in their place of choice. Innovative technologies Palliative care services increasingly use technology to overcome the distance between services and clients. In the Loddon Mallee region consultancy palliative care services are using video links to consult with clients at local health services and in the client s home. Also telehealth is being used to provide education and support in end of life care for aged care facilities in the region. By using technology, these clients are able to remain in their usual accommodation or in their local area, which improves the likelihood they will be able to die in their place of choice. Coordinating care Effective service coordination leads to better outcomes for clients and carers, and ensures that resources are used more efficiently when multiple services work together. Most people with a life-threatening illness will be cared for by a broad range of health, community and aged care providers. Palliative care services have a key role in educating and working with all providers involved in a client s care so that people receive the care they need and are able to die in their place of choice. Providing information, resources and education to disability services Up-skilling the aged care workforce Health promotion and peer education with culturally and linguistically diverse communities Scholarships for palliative care postgraduate studies Disability palliative care Supporting people with a life-threatening illness living in disability accommodation services to be cared for and die in their place of choice requires staff to understand how to provide appropriate palliative care and where to access specialist palliative care if required. Regional disability palliative care project officers have improved the capacity in disability accommodation services. The Barwon South Western region found a common set of perceived barriers to caring for residents at their end-of-life in disability accommodation. These included: lack of skill of staff, lack of knowledge, fear of the unknown, grieving and other residents, self-care and grief. The regional disability palliative care project officers have developed relationships with local disability accommodation services and are now providing information, resources and education to address these issues. We have had success with a (disability residential) group home.this means (resident) can get the full service and may be able to end his life in his home Palliative care nurse Aged care palliative care Many older Victorians call a residential aged care facility home. Across Victoria palliative aged care link nurses assist residential aged care facilities to deliver end of life care for their residents. In the past twelve months 23 residential aged care facilities in the Southern metropolitan region have received training. The training to managers and nurses covered palliative care for older people, and many of these facilities have implemented new processes to improve the care for their residents. In , 89% of Victorian community palliative care clients who identified a residential aged care facility as their preferred place of death were able to die in their preferred location. Page 3

4 Effective and efficient links In Victoria 24% of people were born overseas however people from culturally and linguistically diverse (CALD) backgrounds account for only seven per cent of palliative care clients. Palliative Care Victoria has been funded to work with the Ethnic Communities Council of Victoria to apply best practice approaches to health promotion and peer education within CALD communities to raise awareness and improve access to culturally responsive palliative care. This year CALD community reference groups were established with the Chinese, Italian, Maltese, Turkish and Vietnamese communities. The groups members, who all have influence, connections and play key community roles, are advising ECCV about their communities preferences for end of life care. Up skilling the generalist workforce Scholarships provide medical, nursing and allied health professionals with funding to undertake postgraduate studies in palliative care. This year 38 scholarship were awarded to applicants from diverse professional backgrounds, including 22 recipients from metropolitan Melbourne and 16 recipients from regional areas across Victoria. Recipients reported that building skills and knowledge, networking with new colleagues and enhancing professional and personal confidence has had a positive impact on their capacity to provide high quality palliative care and to support people to die in their place of choice. I now feel competent in identifying the complex and specific needs of the palliative care population. I am also able to appropriately problem solve and mange such complexities with confidence. I am able to contribute and share my knowledge to my colleagues which I have done through in-services and mentoring of students (Scholarship recipient, 2012) Ensuring equitable access The palliative care sector has continued to improve equitable access to a high-quality palliative care service system, as reported in the first year annual report. In particular: Palliative care consultancy services in all Victorian regions are providing advice and support to nonpalliative care treating teams in hospitals and the community An additional 109 Victorians received specialist bereavement support close to their home 205 palliative care employees participated in evidence based research projects which is a 16% increase from the previous year. Survey of the palliative care workforce Training to build the palliative medicine specialist workforce Training in paediatric palliative care Funding to support nurse practitioner candidates Workforce composition In 2013, 259 volunteers and 488 employees completed surveys that were designed to provide a better understanding of the current workforce in the palliative care sector. The palliative care workforce needs to be available and to grow so that increasing demand is met, while skills are improved so client s preferences are increasingly achieved. The survey results provided information about: workforce demographics - volunteers are predominantly Australian-born females with an average age of 64 years while employees are predominantly female with an average age of 48 years. factors that influence decisions to enter and stay in the palliative care sector - volunteers are primarily seeking client contact or the opportunity to use existing skills or to learn new skills, whereas employed clinicians want to care for palliative patients, work in an attractive work environment and apply their skills. workforce education and training levels - employees are highly trained with more than two-thirds holding a postgraduate qualification or diploma and one in seven workers is currently enrolled in further education. future volunteering and employment intentions - 98 per cent of volunteers intend to be still volunteering in palliative care in one year and 87 per cent in five years. 90 per cent of employees intend to be working in their current organisation in one year and 70 per cent in five years. Page 4

5 The results will be used to design targeted recruitment and retention strategies for employees and volunteers in palliative care. the difference we make when we are able to support clients and carers have a lovely death at their site of choice is amazing, palliative care staff member Developing the specialist palliative care workforce In 2013 the Victorian Palliative Medicine Training Program provided training to 19 specialists. This program is building a sustainable high quality medicine workforce across the state. All trainees undertake a three year program that includes six month mandatory terms in a consultative service, an in-patient palliative care unit, a community palliative care service and an oncology setting. The structure of training guarantees the specialists have comprehensive experience and knowledge of palliative care medicine. The paediatric palliative care registrar training program is funded to provide four registrar placements each year. The program has resulted in one registrar commencing training in paediatric palliative medicine and the others have additional skills and a passion for paediatric palliative care. The registrars have increased the profile of the paediatric palliative care program and strengthened relationships with medical units at the Royal Children s Hospital and Monash Health. Government funding supports nurse practitioner candidates to complete their education and work experience requirements. Nurse practitioners are educated and authorised to function autonomously and collaboratively in an advanced and extended clinical role. In addition to assessing and managing patients using nursing knowledge and skills, they also refer patients to other health care professionals, prescribe medications and order diagnostic investigations. The aim of this initiative is to strengthen the palliative care sector s capacity to meet demand. In 2013 Victoria had eleven palliative care nurse practitioners and eleven palliative care nurse practitioner candidates. Conclusion The Victorian Government s increased investment in palliative care continues to provide benefits for clients and their families. Implementation of the Strengthening palliative care: Policy and strategic directions policy is assisting more clients access palliative care and increasing the proportion of clients receiving care in their preferred setting and dying in their place of choice. There continues to be commitment to achieving further improvements over the next two years of the policy through adjusting and modifying current initiatives and bringing new ideas to increase capacity and resources in order to meet the challenge of growing demand and complexity of clients. Authorised by the Victorian Government, Melbourne. To receive this publication in an accessible format phone (03) Page 5

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