Karuna Hospice Services

Thank you for the opportunity to comment on palliative care service arrangements with Queensland Health.

Karuna Hospice Service provides specialist hospice-in-the-home services to people who live in a geographic area that stretches from 10 kms south of the Brisbane River to the Glass House Mountains. The area includes Redcliffe and Bribie Island. The western boundaries run from Corinda, to Mt Nebo and Woodford. During 2004-5 we provided care for 268 new patients and their families as well as 419 bereaved carers in this geographic area.

Karuna is part of a home hospice consortium that also provides services to the Sunshine Coast (Cittimani Hospice Service) and Gympie (Little Haven). The consortium provides free high level palliative care to dying people and their families from a funding base made up of government funding, community fundraising and donations. Our model includes:

• Advanced practice palliative care nurses with 24 hour on call service
• Collaborative care with palliative care medical Consultants and GP’s
• Counsellors for terminally ill patients and their families (this frequently includes children of dying parents)
• Spiritual care
• Trained volunteers who provide in-home respite care and social support
• Loan of home nursing equipment
• A 12 month bereavement support program for people with normal grieving
• Psychological services for people with abnormal and complex grief
• Carer Education

The above services are all provided free to the client family.

In addition Karuna provides

• Education to other health professionals
• Education to the community.
• Psycho-social and spiritual support to people with needs related to dying and loss but who do not need admission to home hospice care.

Our services assist between 58% to 75% of patients to die at home, depending upon the availability of visiting GP’s. These figures are well above the national average for home deaths.

Karuna works collaboratively with hospital based palliative care teams at Royal Brisbane Hospital, The Prince Charles Hospital, Redcliffe, Princess Alexandra, and Mater hospitals. We are a major referral point for the Wesley and Holy Spirit Hospitals, and Greenslopes for patients who live on the north side of Brisbane. We also enjoy a collegiate relationship with Mt Olivet who provide in-patient hospice services and consulting to the domiciliary services.

In addition, Karuna is contracted to manage the state-wide Palliative Care Information Service (PCIS) which is a 1800 telephone information and referral service. PCIS maintains an extensive data base of palliative care and other health and support networks across the state.

We would like to offer comments on a number of issues confronting palliative care services under the headings of structure, funding, collaborative partnerships and workforce before concluding with some suggestions for the future.

1. Impact of current Queensland Health structure

There is no single office that oversights palliative care to ensure consistency of policy, transparency of funding and equity of access. A fragmented approach goes hand in hand with a struggle by both government and non-government palliative care services for adequate funding. Clinician input into planning and decision making is very limited.

There is a lack of a coherent policy for the state. Although there are new national palliative care standards and population planning approaches, it is unclear as to which branch (or branches) is responsible for state-wide planning in Queensland. Furthermore, there is no single policy implementation body. Each zone has its own plan and approach. Brisbane city is managed by two different Zones.

The fragmented model for service delivery can have a major impact on collaboration and partnership. In our experience, hospitals that provide in-patient palliative care can each have their own model. When a Director of a unit leaves, the service model may also change.

Poor links between tertiary treating centres and GP’s are often evident. PCIS takes over 90 calls a month from people requiring assistance. A high proportion know nothing about the existence of palliative care services in their district even though they may have advanced disease and high levels of pain and other distressing symptoms.

2. Funding

The current funding system also appears to be split. Non-government specialist palliative care contracts are managed by the State Wide Health and Community Services Branch (SWHACSB). Queensland Health Districts receive Palliative Care Program (PCP) funding from elsewhere. Districts use PCP funds for:

• their own specialist services (if they exist), and
• purchasing care on a case-by-case (hour by hour) basis, from domiciliary nursing services. In some districts - specialist services can access PCP funding for individual patients when patient numbers exceed their contractual base.

Each district sets its own criteria for allocation of its limited PCP funding. Districts interpret the existing program guidelines differently. Examples include:

• a young man with a spinal tumour who had become quadriplegic and wanted to go home to his young family, had to remain in hospital until a specialist could be found who was willing to certify that he only had 6 weeks to live in order for him to access PCP funding to hire a hoist. District PCP funds were so constrained that a 6 week time limit had been imposed.
• A woman who had rung the PCIS help line for advice on caring for her dying husband was refused access to palliative care services due to her husband’s refusal to talk about his impending death and instead focus his hopes on a miraculous cure. The man had very advanced cancer with large tumour growths in his neck. He was unable to swallow and was in great pain. The PCIS co-ordinator was able to gain access to palliative care services through another hospital. The wife drove her husband to this other hospital for emergency presentation.

3. Partnership and Collaboration

Non-Government services provide a significant proportion of their own funding which they raise through community fundraising activities. In the absence of a nationally benchmarked funding model for Queensland, the community contribution is not transparent. This means that government can avoid being accountable for service levels and equity across the state.

Population growth has seen Karuna’s share of service costs increase from 30% in 1994 to 50% in 2005. We are seeing increasing numbers of patients particularly in the Deception Bay, Bribie Island areas who are unfunded. In 2004, our Cittimani Hospice on the Sunshine Coast saw 240 patients, which is double what was originally contracted for. In May 2005, the Sunshine District Manager approved for 4 clients a month to be funded from PCP funds to alleviate the situation somewhat.

The scarcity of resources places great stress on all service providers, and ultimately the patients. We understand anecdotally, that the Prince Charles Hospital is currently unable to fund annual leave replacement of nurses in their palliative care ward. As this 12 bed ward contains the only designated public palliative care beds for the entire northern half of the city, this is a major concern. RBH has no palliative care beds, and their Consulting Team currently consists of 1 medical consultant and 1.5 palliative care nurses. This is below the criteria for a Level 6 hospital.

There are a number of other gaps in services including:

• Lack of access for non-cancer patients: non cancer patients make up only 10% of the current palliative case load. Access for people with end stage chronic diseases involving significant pain, breathlessness, and distress, can be difficult to obtain when they have long term care needs.
• Severely restricted home help and respite care services: palliative patients are frequently barred from accessing HACC services on the basis of age. Young families with young children have to be in a state of crisis before overnight respite care for 1-2 nights can be extracted from the Commonwealth. Volunteers make up the mainstay of non-clinical support.
• Very limited bereavement support for patients on PCP funding: complicated or unresolved grief is a recognised link to acute and chronic depressive illnesses. Unfortunately, PCP purchase of bereavement support services is usually limited to 2 visits.

4. Workforce

There is a shortage of Palliative Consultants in Queensland and a decrease in the number of GP’s willing to do out of hours calls and home visits. The existing palliative care nursing workforce contains relatively high proportions of nurses with Masters Degrees. This workforce is ageing, and nurses from postgraduate palliative care courses have declined as university fees have increased. We receive numerous requests for training which we would like to meet but do not have a funded training position.

Suggested Solutions

Palliative care services in Queensland were mainly developed in the early 1990’s with the State starting from a very low base compared to the rest of Australia. As far as we are aware , Queensland is still not operating on a nationally benchmarked funding model or service level. Any restructure of Queensland Health that does not include within it, a focal point for palliative care, risks fragmenting service networks ever further. It is quite impossible for palliative care to compete for funds against acute services, especially against a background of population growth and funding constraints. With this in mind we would like to offer the following suggestions.

Structure

• One focal point in a central body responsible for state-wide palliative care policy, and planning along with a willingness to engage input from clinicians
• Service clusters that are large enough to deliver services on a network basis both within the cluster, and tertiary hospitals and smaller centres.
• A consistent and collaborative model of care
• Some mechanism for accountability to the community of a cluster

Funding

• A nationally benchmarked approach to service provision and funding
• Specific funding for palliative care that matches the population growth

Collaboration and Partnership

• True partnership and recognition of community services contribution
• Clearly designated primary, secondary and tertiary services with patient focused transition between services. The United Kingdom has developed a number of policies, networks and mechanisms to support this concept.
• Increase in palliative in-patient beds for assessment and severe symptom control.
• Community based respite beds. A legislative framework and funding model is needed to be able to set up a house (similar to disability services model) of 4-5 bedrooms where people can stay overnight or a couple of days with funded on-site carers and support from the community specialist service. Patients can be forced into hospital if carers become exhausted, even though they themselves do not require acute care.

Workforce

• Nursing scholarships for postgraduate palliative care that include community placement, and an increase in Medical training positions.
• The implementation of nurse practitioners, with a legislative framework to enable these nurses to initiate and adjust medication within clinical protocols. Palliative care specialist nurses already support General Practitioners in the community and work collaboratively with Consultants.

In conclusion, we thank you for the opportunity to comment. We are in no way critical of our palliative care colleagues who work under great duress in the public system. Likewise we have been able to develop good working relationships with many individuals in corporate office. However, it is our view that there is a systemic problem accompanied by severe funding shortfalls across the state that has had a detrimental effect on palliative care service development and ultimately the patients. We would be happy to meet for further discussion. Our colleagues from Mt Olivet would also be pleased to join us if you would like further input.

Yeshe Khadro
Director
Karuna Hospice Services