A Framework for the Delivery of Comprehensive Palliative Care Services in the Australian Private Sector

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1 A Framework for the Delivery of Comprehensive Palliative Care Services in the Australian Private Sector Prepared for the Australian Centre for Health Research by Cabrini Health Ms. Natalie Sullivan, Ms. Helen Walker, Dr. Joanne Brooker Palliative care is provided to people with an active, progressive and advanced disease or illness, for whom there is little or no prospect of cure. Palliative care is holistic care; focussing on quality of life and helping people live well. Palliative care addresses the physical needs of the patient, including prevention and relief of suffering by means of early identification and assessment of pain and other problems. As a holistic approach, it also addresses the emotional, social, cultural and spiritual needs of the patient, as well as those of their family and carers. Privately insured patients have an expectation their private insurance will cover them through all aspects of their illness journey and not cease when curative treatment is no longer appropriate. The impact of this is these private patients are unable to access palliative care and therefore are receiving more expensive, and at times, aggressive treatment in the final stages of life in a private acute hospital which may not be the best place of care on many fronts. Considering the wish of most people to die at home, as opposed to a hospital bed which could be an intensive care bed, the issue of failing to invest in home based and inpatient palliative care services seems indefensible. This article describes a comprehensive model for specialist palliative care in the private sector. Models of Palliative Care in Australia Gordon et al (2009) noted that the Australian palliative care sector is evolving rapidly, with the emergence of flexible models of care. Palliative care is provided by public, non-government and private organisations, through a combination of delivery models, including: Designated hospice services Designated palliative care units in acute and subacute hospitals Non-designated inpatient palliative care services in acute or subacute hospitals Ambulatory palliative care hospital services Specialist palliative care community services Primary care community-based services (Gordon, et al., 2009) By international standards, Australia has been described as having impressive palliative care coverage of 85% of the population, delivered through flexible models of care across inpatient, 1 P age

2 outpatient and home settings (Gomes, Harding, Foley, & Higginson, 2009). More progress is required, however, with regard to the establishment of flexible funding and financing models to improve integration of care and encourage service substitution across settings (Gordon, et al., 2009). CURRENT SERVICE LEVELS Palliative care is a growing service in Australia. Alongside many other nations, Australia is faced with an ageing population and therefore an increasing prevalence of age-related chronic conditions, such as cancer, organ failure, and dementia, which may require palliative care (Australian Bureau of Statistics, 2009). Each year in Australia, approximately 134,000 die and approximately half of these deaths are classified as expected, suggesting a large demand for palliative care services (CareSearch-Palliative Care Knowledge Network, 2012; Gordon, Eager, Currow, & Green, 2009). According to the Australian Institute of Health and Welfare (AIHW 2011) both the number of deaths and proportion of people aged 65 or over will dramatically increase in upcoming decades. They project 1:4 of the population will be aged 65 or older as opposed to 1:8 in The pattern of disease is changing to include complex chronic illness in a higher proportion of the population. An increasing focus on palliative care service provision taking into account patients preferred place of care until, preferred site of death and equity of access to timely and responsive palliative services is therefore increasingly important for health planners and funders. Figure 1: Deaths and Proportion aged 65 years and over (AIHW 2011) 2 P age

3 Accordingly, the Australian Government and States and Territories have developed over arching strategic frameworks to guide the formation of palliative care policies, including funding arrangements and structures for service delivery (eg. Strengthening palliative care: Policy and Strategic Directions , Victorian Department of Health, 2011). These frameworks are focused on the coordination of publicly funded services and have limited influence on the private health sector. PRIVATE HEALTH INSURANCE AND PALLIATIVE CARE Currently, there are isolated examples where private health insurance companies provide coverage for palliative care services particularly in the community setting. There are limited private specialist palliative care services across Australia and where provided, in the main, they are in the Catholic Health system. The Little Company of Mary has a smallscale localised arrangement in South Australia and Tasmania but inpatient services only. Cabrini Health in Melbourne has provided both an inpatient and community based specialist palliative care service. Apart from Cabrini Health there is no other private health insurance funded specialist community palliative care service in Australia. There is increased interest in palliative care service provision by a number of large private sector health services in Australia, both for profit and not for profit. This gap in services means the privately insured patient who receives active treatment for their cancer or other chronic illness from a private specialist and private hospital is not able to readily access palliative care through the private sector. In 2008/9 77% of palliative care was provided for public patients, of this cohort 16% were funded by private health funds and 7% by the Department of Veterans Affairs (AIHW, 2011). With the private sector providing very significant service to the community this statistic shows the inequity. Compounding this inequity, publicly funded services are increasingly not providing specialist nurse consult services to the private sector and private patients are unable to access the range of packages developed to support patients at home. Home based palliative care services are premised on the fact the needs of most palliative care patients can be met through the primary health care system including the GP. Current private health funded palliative care home services are based on a discharged model and are predominantly nursing led services with support from the primary care system. This model has significant limitations due to the funding constraints. Benefits are generally structured based around an initial visit, usually by a nurse and paid on a daily basis, irrespective of the number of visits per day. Allied Health is not funded in the payment, nor is medical support, personal care or equipment and medical supplies. Bereavement services are provided in most cases. 3 P age

4 Home based palliative care services should be included as a benefit in standard comprehensive private health insurance premiums. As such, a service would satisfy the criteria of broader health cover which is to include services which: are part of an episode of hospital care (where a patient is admitted to hospital for an acute episode and discharged with the support of home based palliative care services) substitute for hospitalisation prevent hospitalisation. The incentive for health insurance funds to cover out of hospital home based palliative care services lies in potential savings resulting from lower readmission rates to hospital and shorter duration of hospital stay. Patients who receive care support in the home are less likely to experience re-admission. Waiting periods for accessing publicly funded home based palliative care services can result in adverse patient episodes and prolonged hospital admission. Immediate access to these services in the home upon discharge significantly improves outcomes. Insurance Levels Levels of private health insurance membership in Australia are showing a steady increase and as the population ages there is little doubt the aging population will be reflected accordingly in health fund membership. Figure 2 shows insured persons by age group, current as at September It is well known that the over 65 s are going to be dramatically increasing in number and complexity of health needs. In addition, those people in the health insured balloon of Australians over 50 is rapidly moving into this age of increasing health needs. Demands from members for equitable access to care options will surely follow. The time to act is now to ensure we have sustainable models in place to provide cost effective and appropriate care for this cohort. Figure 2 Insured persons by age cohort Age Category 4 P age Female Male Insured Persons ('000) Private Health Insurance Administration Council 2012

5 Why are Health Funds concerned about Palliative Care? The Senate Enquiry into Palliative Care, October 2012, devotes a section to the role of private health insurers in palliative care provision in Australia. The report lists concerns that palliative care is seen as a bottomless pit and not a prudent investment, by some health insurers. It also reports there is no legislative barrier to funds placing palliative care in their schedules and this lack of support, particularly for community based services, is creating access disadvantage for people needing palliative care who happen to have private health insurance. Submissions were made asking that the Australian Government be urged to provide leadership to the sector by providing evidence for health funds to be actively involved in palliative care service funding. The Committee commented as follows: The committee acknowledges that in the future, demand for palliative care services will increase as the population ages. As more Australians invest in private health insurance, the committee calls on the private health sector to contemplate the role they might play in helping meet the growing demand for comprehensive palliative care. The committee considers that further research into the potential role of the private health sector, including private health insurers, in providing palliative care services is required and suggests that the federal government initiate such a review. Building rigour in Palliative Care The Australian Government has, as part of its palliative care strategy, a goal to build clinical evidence, quality and measurement in the sector. To this end, it has funded the Palliative Care Outcomes Collaboration (PCOC), Care search and the National Standards Assessment Program. Services data is benchmarked nationally, information fed back to services and quality and improvement activities are integrated at a local service level. PCOC is now at the stage where it can demonstrate a 15% improvement in clinical outcomes nationally since 2009, with all but 5 specialist units in Australia participating in this robust program. By standardising palliative care assessments, PCOC has led to the development of a common language in palliative care. Clinical outcomes are able to be measured and compared, facilitating the development of benchmarking in the palliative care sector. Through PCOC, the palliative care sector has proven itself to be accountable and is in a strong position to demonstrate clinical outcomes and service improvement to a greater degree than many other clinical specialties. 5 P age

6 Building a Model Since April 2007, private health funds have been able to offer broader health insurance. This means funds are able to pay benefits for a wider range of services effectively removing the boundary between hospital and ancillary insurance with the premise of broader health cover enabling funds to pay benefits for services where the patient remains under the care and management of the hospital regardless of whether the hospital care is provided in the home or hospital setting. The three service models proposed in the comprehensive framework for the delivery of palliative care in the private sector include: Specialist Inpatient Palliative Care People who receive and will continue to need inpatient palliative care Specialist Community Based Palliative Care People who can and will continue to be able to be managed in an out-of-hospital setting People who are in an acute facility who require a palliative care consultation to support appropriate acute care. Acute Specialist Palliative Home Care (inpatient substitution) People who are currently being managed in an inpatient setting but could be cared for at home if a safe and effective service model could be developed and subsequent funding mechanism could be arranged. The challenge for the health funds is being able to fund out of hospital care based on a clear understanding of how people who currently receive their care needs in an inpatient setting can be cared for at home in a hospital substitution model rather than an outpatient/community visit model. In order to ensure transparency the criteria developed for each service model clearly demonstrates the third stream of care is a true exercise in hospital substitution and the risks are minimised of just adding additional entitlements for out-of-hospital palliative care that can already be provided. Clear admission criteria for each of the models uses the phases of care described in the Palliative Care Outcomes Collaboration (PCOC). By using the PCOC phases of care (Table 1) to develop admission criteria for each service model, PCOC can also be used to evaluate the outcomes of the palliative care service models. 6 P age

7 Table 2 describes the three service models of palliative care and the PCOC phases that are used to identify admission or transfer criteria for each service. Table 1: PCOC Palliative Care Phases The palliative care phase describes the stage of the patient s illness within an episode of care and provides a clinical indication of the level of care required. It should be noted palliative care phases are not necessarily sequential, the patient may transition back and forth between phases during an episode and there may be more than one phase of care within these episodes. The five palliative care phases are: 1. Stable: Patient problems and symptoms are adequately controlled by an established plan of care, further interventions to maintain symptom control and quality of life have been planned, the family/carer situation is relatively stable and no new issues are apparent. 2. Unstable: An urgent change in the plan of care or emergency treatment is required due to at least one of the following: the patient experiences a new problem that was not anticipated in the existing plan of care, the patient experiences a rapid increase in the severity of a current problem or the patient s family/carers circumstances change suddenly impacting on patient care 3. Deteriorating: The care plan is addressing anticipated needs but requires periodic review because the patient s overall functional status is declining and the patient experiences a gradual worsening of existing problem and/or experiences a new but anticipated problem. The family/carers experience gradual worsening distress that impacts on the patient s care. 4. Terminal: Death is likely within days. 5. Bereaved / post death support: The patient has died. Bereavement support is provided to family/carers is documented in the deceased patient s clinical record. Specialist Inpatient Palliative Care Palliative Care Outcomes Collaborative, (2012) In acute inpatient settings, dying patients may be subject to unhelpful medical tests and unwanted treatments intended to prolong life but that may amount to an exercise in medical futility (Joseph, 2011: Solomon, et al., 1993). Patients who are admitted to an acute care facility with a life-limiting condition can be cared for less expensively if a palliative care approach is used rather than an aggressive effort to use diagnostics and therapies towards cure. If patients are allowed to be more involved in deciding their courses of treatment and 7 P age

8 care, they will often make less use of futile therapies. Research has found that approximately half of older adults would prefer end of life care focused on maximising comfort, rather than life-sustaining treatments such a as cardiopulmonary resuscitation, respiration or dialysis (Nahm & Resnick, 2001). In many cases the nature of care provided in acute settings, where the focus is on cure, may not be well-suited to the needs of people with incurable and advanced disease (Hatziandreu, et al., 2008). Palliative care is a well defined medical specialty and recognised by the World Health Organisation as a vital part of health care provision. The Australian Government Department of Health and Ageing recognises palliative medicine as a specialty and has granted special access to the MBS and PBS for palliative patients. It would appear, in the face of this, somewhat incongruous that some health funds continue not to recognise palliative care. Proposed Inpatient specialist palliative care service model Specialist inpatient palliative care is provided by a multidisciplinary team including 24 hour nursing care, allied health and bereavement services. All staff have specialist qualifications in palliative care. Using the PCOC phases of care to describe patients who would be appropriate for specialist inpatient palliative care would include patients who are unstable and require an urgent change in the plan of care due to the patient experiencing a new problem or a rapid increase in the severity of an existing problem; or when family or carer circumstances change suddenly impacting on patient care. Similarly patients in a deteriorating phase would also be appropriate where they are deteriorating to a terminal phase and do not wish to die at home. Community Based Palliative Care Living and dying in the home is widely acknowledged as a desirable alternative to inpatient care for many people. International research has found that up to 90 percent of people with a lifethreatening illness would prefer to die at home, or in a home-like environment. The research also found that, despite this preference, only 26.5 percent of people died at home, while 56 percent died in hospital. A growing body of literature shows that involvement of palliative care can facilitate meeting people s wishes to die at home or in a more home like environment (Hatziandreu et al. 2008) Dying in the home can provide both quality of life from the patient s perspective and efficient use of resources from the perspective of the health care system. Home care is not a viable option unless patients and their carers are supported by services. Without this support, patients are increasingly admitted to hospital for control of difficult symptoms or because families and carers can no longer cope with care responsibilities. This places an extra burden on 8 P age

9 the health system. There is a body of evidence emerging on carers needs in the community and in palliative care customer satisfaction studies across the country we continue to see this area as an unmet need. Proposed Specialist Community Based Palliative Care Model The proposed specialist community palliative care service acknowledges existing private health models. The service is a nurse-led model of care with GP support and limited allied health input (Social Work and Occupational Therapy). Bereavement services are provided to support the family. Services include palliative care assessment, care planning, along with advice and support for people and their families. Advice and support is available to palliative care patients and their families 24 hours a day, either remotely or at the point of care, based on need. Using the PCOC phases of care to describe appropriate patient admissions to this service, patients in a stable phase are appropriate for this service as would patients in a deteriorating or terminal phase where the patient/carer preference is to be at home and the terminal care is uncomplicated. Patients in the unstable phase in the community should be transferred to inpatients or should transition to the acute specialist home care program (described below). While this service focuses on providing specialist palliative care in the home, it also offers the opportunity for the community team to provide a consultation service in the acute hospital setting for patients with palliative care needs, and their treating teams. Acute Specialist Palliative Home Care (inpatient substitution) Clearly there is a strong demand from terminally ill patients and their families for greater access to services that facilitate death at home. However the current discharged model of care only supports a small proportion of patients who want to be cared for in the home due to the funding constraints limiting service provision to one visit per day in most cases and relying on the support of the primary care system. In order to optimise the provision of safe, appropriate and efficient palliative care in the home, a true hospital substitution model is proposed. The acute specialist home care service is a replica of the inpatient service in the level of service provided. It is a Palliative Care Physician led service with a full multidisciplinary team, up to 24 hours a day nursing care, bereavement services and will provide personal care, domestic support and meals as required. Patients in a stable phase should be discharged to the community consultation service. Patients in the unstable phase where an urgent change in the plan of care or emergency treatment is required because the patient experiences a new problem that was not anticipated or a rapid increase in the severity of a problem or where family/carer circumstances change 9 P age

10 suddenly impacting on patient care. Where the family/carer are still supportive of the patient being cared for at home, the addition of emotional support as well as increased nursing care, a visiting palliative care physician, increased allied health and emotional support with domestic and meal services can be the difference between a patient staying at home or requiring transfer to an inpatient service. Patients who are in the deteriorating phase would remain with acute specialist home care where patient/ carer preference is to be at home. Where patient/carer preference is no longer to be at home they would be admitted to the inpatient unit. A patient in terminal phase would only be transferred to the inpatient unit when it was their preference not to die at home. 10 P age

11 Table 2: Service models and PCOC phase descriptions PCOC Phase Inpatient Community consultation service Stable Patient problems and symptoms are adequately controlled by established plan of care Further interventions to maintain symptom control and quality of life have been planned Family/carer situation is relatively stable and no new issues are apparent Unstable An urgent change in the plan of care or emergency treatment is required because The patient experiences a new problem that was not anticipated Patient experiences a rapid increase in the severity of a problem Family/carer circumstances change suddenly impacting on patient care Deteriorating The care plan is addressing anticipated needs but requires periodic review because Patients overall functional status is declining Patient experiences a gradual worsening of existing problem Patient experiences a new but anticipated problem Family/carers experiences gradual worsening/distress that impacts on patient care Terminal Death is likely within days Bereavement The patient has died Bereavement support provided to family/carers Patients should be discharged to community program once established in stable phase Yes Yes. Patient phase change can move from Deteriorating to stable discharge to community program. Deteriorating to unstable would remain in the inpatient unit. Deteriorating to terminal would transition to acute specialist home care for end of life care or would stay in inpatient unit based on patient/carer wishes for place of death. Yes. Patient would only be transferred home when it was their choice to die at home Acute Specialist Home Care (hospital substitution) Yes Patients should be discharged to community program once established in stable phase Patients in unstable phase in the community need immediate transfer to inpatients or should to transition to acute specialist home care program Yes. Patients would remain with community consultation service where patient carer preference is to be at home. Yes for uncomplicated terminal care Yes Yes Yes Yes Yes. Patients would remain with acute specialist home care where patient/ carer preference is to be at home. Where patient/carer preference is no longer to be at home they would be admitted to the inpatient unit. Yes. Patient would only be transferred to the inpatient unit when it was their preference not to die at home. 11 P age

12 The following table (Table 3) describes the services that would be provided for each service model. Table 3: Service models and service provision descriptions Service Description Inpatient Community Acute Specialist Home Care (hospital substitution) Medical Palliative Care Physician GP (Medicare funded) Palliative Care Physician GP (Medicare funded) Nursing 24 hours Scheduled visit maximum 1 Up to 24 hrs day. (Extra required visits attract no further funding). Physiotherapy As required Not funded As required Occupational Therapy As required Not funded As required Social Work As required Not funded As required Psychology As required Not funded As required Dietetics As required Not funded As required Art/Music Therapy As required Not funded As required Pastoral Care Provided Not funded As required Bereavement services Provided Provided Provided Medication Provided Not funded Provided Equipment/Medical Provided Provided Provided Supplies Personal Care Provided Not funded As required Domestic support Provided Not funded As required Food services Provided Not funded As required Conclusion This article describes a comprehensive framework for the delivery of palliative care services in the private sector using evidence based criteria to determine appropriateness for each model. The utilisation of PCOC will ensure the outcomes and benefits of each model can be measured and benchmarked. This article aims to encourage health funds to re-examine their commitment to palliative care and particularly to allow for more flexible products to cover services within specialist inpatient palliative care services, and services that do not require admission to hospital but which may be a part of an episode of hospital care, substitute for hospital care, or prevent hospitalisation. Services should be provided on an equitable basis to private health insurance policy holders regardless of location or diagnosis. All private health insurance policy holders are entitled to a real choice in care options. 12 P age

13 References Australian Bureau of Statistics. (2009) Australian Social Trends Australian Institute Health Welfare. ( 2011). Trends in palliative care in Australian hospitals. Cat. no. HWI 112. Canberra: AIHW CareSearch-Palliative Care Knowledge Network. (2012). Providing Palliative Care in Australia. Retrieved from Gomes, B., Harding, R., Foley, K. M., & Higginson, I. J. (2009). Optimal approaches to the health economics of palliative care: report of an international think tank. Journal of Pain & Symptom Management, 38(1), Gordon, R., Eager, K., Currow, D., & Green, J. (2009). Current funding and financing issues in the Australian hospice and palliative care sector. Journal of Pain & Symptom Management, 38(1), Hatziandreu, E., Archontakis, F., Daly, A., & National Audit Office. (2008). The potential cost savings of greater use of home- and hospice based end of life care in England. Cambridge: RAND EUROPE Joseph, R. (2001). Hospital police on medical futility does it help in conflict resolution and ensuring good end-of- life care? Annals of the Academy of Medicine, Singapore, 40 (1), Nahm, E. S., & Resnick, B. (2001). End of life treatment preferences among older adults. Nursing Ethics, 8(6), Palliative Care Outcomes Collaborative (2012) Revised Phase definitions. Retrieved from Private Health Insurance Administration Council Data tables Membership and Coverage. Retrieved from Solomon, M.Z., O Donnell, L., Jennings, B., Guilfoy, V., Wolf, S. M., Nolan, K., et al. (1993). Decisions near the end of life: professional views on life-sustaining treatments. American Journal of Public Health, 83(1), Victorian Government Department of Health. (2011). Strengthening palliative care: Policy and strategic directions Retrieved from 13 P age