Palliative Care

Tabled: 15 April 2015

3 Improving engagement with palliative care

At a glance

Background

Opening up discussion about care and treatment preferences early in preparation for death can help palliative care staff to best cater to patient needs and result in less anxiety and grief. Improving awareness of palliative care and advance care planning should improve access to services and help more people to make informed choices about their death. Coordinating these services is a significant challenge.

Conclusion

The Department of Health & Human Services (DHHS) has taken a slow but methodical approach to implementing actions outlined in its Strengthening palliative care: Policy and strategic directions 2011–2015 (Strategic Directions) to improve awareness of palliative care in communities that do not typically access these services. It is not yet clear what impact these actions have had on patient awareness. Similarly, advance care planning has been an accepted model of practice for many years, but it is only in the past 12 months that some health services have begun to adopt these practices.

Findings

  • There has been little progress in improving community awareness since 2011, although a number of promising initiatives commenced in 2013.
  • Low survey response rates prevent DHHS from understanding the use of advance care planning.
  • Advance care plans are used with around half of all patients supported by community palliative care services. This has not changed over time.

Recommendations

That health services:

  • prioritise the implementation of advance care planning and comply with DHHS' data collection and reporting requirements.

That DHHS and health services work to:

  • understand barriers to accessing care, understand and respond to unmet demand, and engage communities who don't traditionally access palliative care
  • provide patients and carers with more support to understand what services are available and how to access them when they need them.

3.1 Introduction

Awareness of palliative care starts in the community. Aged care services, general practitioners, disability support homes, religious and cultural organisations, universities and training institutions, and the government all have a role to play in communicating information about dying. The more organisations involved, the greater the chance that palliative care and real choices about where and how to die will be discussed. The challenge is to reach more people and parts of the community not currently utilising services.

In March 2014, the Department of Health & Human Services (DHHS) released Advance care planning; have the conversation: A strategy for Victorian health services 2014–2018 to support health services to develop, review and activate advance care plans (ACP). Advance care planning provides an effective tool for prompting discussions and preparations for the end of life. Ideally these discussions begin before an emergency brings someone to hospital.

This Part assesses initiatives to improve community awareness about palliative care and the implementation of advance care planning in audited health services.

3.2 Conclusion

Work has begun—albeit belatedly—to improve awareness of palliative care in communities that do not typically access these services, and within hospital settings. It is not yet clear what impact these actions have had on patient awareness. Further work is required to understand and address the barriers to particular sectors of the community engaging with palliative care.

Engaging patients and their carers needs to begin earlier so that they can make informed decisions about how to manage care independently and access support when they require it.

Advance care planning has been an accepted model of practice for many years. Despite this, use of advance care planning is low and shows no signs of growth. It is disappointing that greater progress has not been made as advance care planning is a central pillar of effective palliative care. It allows palliative care teams to understand what is important for a patient at the end of their life, and brings comfort to the patient, their family and carers that their final wishes are known and will be considered. DHHS should continue to promote advance care planning across all health settings and improve its reporting to better understand the level of uptake across the health system.

3.3 Raising community awareness

Progress to improve community awareness about palliative care has been slow. DHHS has started to introduce community awareness programs and encourages health services to develop consultancy services to guide and support hospital and community-based staff. However, further work is required to:

  • engage communities that do not traditionally access palliative care
  • understand barriers to accessing care
  • understand and meet unmet demand.

DHHS' Strengthening palliative care: Policy and strategic directions 2011–2015 (Strategic Directions) recognised the need to raise community awareness about palliative care to encourage people to talk about dying and better understand the available options for support. It committed DHHS to raising awareness of palliative care among Aboriginal and Torres Strait Islander people and people from culturally diverse communities.

DHHS has made some progress towards this objective. It has introduced new programs for culturally and linguistically diverse communities and funded a number of projects to support the provision of culturally responsive palliative care for Aboriginal and Torres Strait Islander people. However, as DHHS was slow to implement this action, it is still too early to examine the impact of these actions.

Figure 3A
Advocacy in culturally and linguistically diverse communities

People from culturally and linguistically diverse communities are slightly more likely to die in hospital than Australian-born patients. Patients with a recognised need for an interpreter more commonly died in hospital (71.5 per cent of the time) compared to patients who spoke English (66.4 per cent of the time). In 2013–14, DHHS funded a project to raise awareness of palliative care among Chinese, Italian, Maltese, Turkish and Vietnamese communities and improve their access to palliative care services. This project included:

  • community education about palliative care services delivered by bilingual teachers
  • community awareness campaigns
  • building relationships between community palliative care organisations and health services
  • cultural responsiveness training for health services.

At the end of the first year, DHHS contracted a researcher to complete a project evaluation. It found that:

  • 90 per cent of community education participants stated they learnt new things
  • it is too early to determine the impact of community awareness on palliative care
  • in September 2014, the first cultural responsiveness education training was conducted for health services—further forums will be run in 2014–15.
  • In 2014–15, DHHS plans to engage five additional communities—Arabic, Croatian, Greek, Macedonian and Polish.

Source: Victorian Auditor-General's Office.

3.3.1 Engaging health care staff and carers

Staff from audited health services agreed that health professionals need to engage people in palliative care earlier in the patient's journey. The Strategic Directions intended to build 'awareness, capacity and resilience' in people with a terminal illness and their carers. To build the capacity and resilience of carers it is important to strengthen the skill base of staff across the healthcare system so that they are better able to:

  • advise carers about the task ahead
  • provide information on how to manage care independently and when and where extra support may be necessary.

DHHS' 2004–09 palliative care policy introduced the requirement for health services to develop palliative care consultancy services. These services consist of teams of doctors and nurses who provide advice, support, education and training to treating teams in hospitals, community palliative care services and general practitioners. These are now well established within hospitals and some also consult to aged care and disability services and support palliative care provision in rural areas. Palliative care consult teams have increased from four teams across the state in 2004 to 18 in 2015.

3.4 Advance care planning

DHHS has had difficulty tracking the use of advance care planning in health services—particularly inpatient services. In community palliative care services, use of ACPs has remained at around 50 per cent since 2012. Some Victorian health services have been using different models of ACPs for over 10 years.

Advance care planning is a process by which health professionals discuss and document their patient's end-of-life care preferences. Ideally a patient will complete an ACP prior to being admitted to palliative care, or following admission to an inpatient or a community palliative care service. Documented ACPs should guide future clinical decision‑making. This is particularly important where a patient later loses their decision-making capacity. Research, completed by Monash University, showed that completing an ACP can improve quality of care at the end of life and increase the likelihood of a person's wishes being known and respected.

DHHS' Advance care planning; have the conversation: A strategy for Victorian health services 2014–2018 promotes the use of advance care planning in health services and provides clear guidance for generalist health care staff on how it should work. However, some jurisdictions such as South Australia and Northern Territory now have legislation for advance care planning, including specific forms for health services and patients to create. New South Wales introduced a policy similar to Victoria's in 2013, Advance Planning for Quality Care at End of Life: Action Plan 2013–18.

Most of the audited health services had made significant progress towards implementing advance care planning in the past 12 months. However, progress varied by service as shown in Figure 3B.

Figure 3B
Progress of advance care planning in health services

  • Service 1 was an early adopter of advance care planning and has done considerable work to educate staff and embed the process across the service. It started to roll out its chosen model in 2004 supported by DHHS. Service 1 provides clear guidance for clinicians and patients, with patient information translated into nine major languages. The guidance material has been supported by staff training. This approach represents better practice and its impact can be seen in good use of advance care planning in the service compared with other inpatient services.
  • Service 2 released its advance care planning policy in July 2014 and it reflects Catholic Health Australia's ethical standards. The policy is not yet backed by internal systems and documentation procedures that reflect advance care planning principles, such as articulating wishes for spiritual care or other non-medical values and preferences. The project plan for a 2015 implementation is expected to be approved by the steering committee shortly.
  • Service 3 had a different advance care planning policy in place from 2002 to 2005. However, it has been slow to adopt a new model. After ratifying its current model in April 2013, it intends to pilot it in one ward from February 2015 and progressively roll it out to other services throughout the year.
  • Service 4 had trained its community staff in advance care planning, but had provided little training for its inpatient staff.

Source: Victorian Auditor-General's Office.

Staff from audited inpatient services advised that while they are trained to start palliative care conversations, they feel that it is often not appropriate to begin end‑of‑life discussions at the late stage they see patients. Research, completed in 2013 by Monash University together with the Alfred Hospital, found that for 64 per cent of patient charts reviewed in metropolitan health services the first record of end-of-life discussions occurred in the last 24 hours of life.

Audited inpatient staff suggested that general practitioners—who are most likely to have a long-term relationship with a patient—should initiate these conversations earlier.

Figure 3C outlines a typical scenario that highlights the importance of having appropriate supports in place to facilitate palliative care conversations.

Image is of two people holding hands. Photograph courtesy of Bajak/Shutterstock.com

Figure 3C
Difficult discussions

Mr J had a fall at home triggering a heart attack. As his daughter sat waiting with her mother at the hospital they talked about Mr J's views on dying. Her mother said that despite his age, his relative good health meant that he had not thought too much about death—maybe he had assumed he would deal with it later or when a serious health issue came up. A nurse asked them if Mr J had an ACP. They advised they were not sure what this was.

The nurse explained that a completed plan would help health care staff and family to decide what care is best for a patient—for example, if Mr J preferred to be resuscitated or not. The nurse left some information for them to look at later. When Mr J woke up, Mrs J and his daughter visited him, but they were too emotional to bring up the ACP. Mrs J left the information in a prominent spot in the house in the hope that Mr J would discover it and decide for himself without anyone needing to bring it up.

Mrs J discussed her apprehension with the community palliative care nurse when she visited the house the following week. After making sure Mr J was comfortable, the nurse asked him about what care he might want at the end of his life—treatment to prolong life or to keep him as comfortable as possible. They looked at the ACP forms together and Mr J asked some questions—he wanted to know if he could change his mind once he had signed the documents—the nurse assured him that he could at any time. This made him feel more in control. A few days later he talked through his decisions with his wife. Mrs J hoped that they would not need to use the forms and was very relieved that she didn't need to make these decisions by herself and without having properly discussed it with her husband.

Source: Victorian Auditor-General's Office.

3.4.1 Uptake of advance care plans

To track the progress of advance care planning implementation, DHHS requires community-based inpatient services—the palliative wards and the consulting teams based in hospitals—and day hospices—non-medical respite facilities—to use its Policy Implementation Audit Tool. This tool collects information that is not captured by current reporting requirements through a survey.

However, DHHS did not sufficiently consult with health services about the data required and its purpose, and response rates were too low to be usable. In 2011–12, 21 out of 57 health services who responded to the survey were unable to respond to the questions on documented ACPs, or could only provide an estimate. This means there is no true baseline from which to measure performance. DHHS advised that this data is unreliable and should not be reported.

DHHS also requires community palliative care services to provide information on advance care planning in its Victorian Integrated Non-Admitted Health (VINAH) minimum dataset. This data is more reliable as more services have been responding each year.

Figure 3D shows that the percentage of community palliative care service episodes with ACPs has remained steady at around 50 per cent since 2012. However, DHHS needs to improve its data collection to better understand if and how advance care planning is utilised in inpatient settings so that it can work with health services to better target advocacy.

Figure 3D
Community palliative care service episodes with an ACP

Figure 3D shows that the percentage of community palliative care service episodes with ACPs has remained steady at around 50 per cent since 2012. However, DHHS needs to improve its data collection to better understand if and how advance care planning is utilised in inpatient settings so that it can work with health services to better target advocacy.

Note: An increasing number of community palliative care services are submitting VINAH data to DHHS each year—this graph tracks only community palliative care services that submitted VINAH data in 2012–13.
Source: Victorian Auditor-General's Office analysis of DHHS data.

3.5 Palliative care for people with a disability

Awareness of palliative needs in group homes—such as for people with a disability or in an aged care facility—is promoted by a nurse in each region, funded by DHHS promote existing palliative care guidance and provide links to community palliative care services.

In 2010, DHHS developed the Disability Residential Services Palliative Care guide: End-of-life care for residents of disability residential services that explains the key areas for support, and identifies useful documents, training and resources. One consortium advised that the guide was useful but not well known. Community visitors appointed to visit and report on support in group homes were consulted for the audit—they were not aware of the guide.

Community visitors outlined a number of positive examples of disability staff accessing palliative care services for residents. One example is seen in Figure 3E.

Figure 3E
Supporting people with disabilities

In one example, when a resident recently diagnosed with cancer expressed a wish to die at home, the manager contacted the regional palliative care consortium for advice. The consortium's disability link nurse organised a forum at the shared supported accommodation facility for the staff and family.

At the forum, the disability link nurse provided advice about the treatment prognosis and palliative care. The disability link nurse then assisted the staff to contact a community palliative care service and organised regular visits. The house manager established a support group of nurses from the nearest hospital, the consortium disability link nurse, house staff and family. The community palliative care service provided direct care for the resident and the disability link nurse was available to support the staff, residents and family.

Source: Victorian Auditor-General's Office based on community visitors' feedback.

Recommendations

That health services:

  1. prioritise the implementation of advance care planning and comply with the Department of Health & Human Services' data collection and reporting requirements.

That the Department of Health & Human Services and health services work together to:

  1. understand barriers to accessing care, understand and respond to unmet demand, and engage communities who do not traditionally access palliative care
  2. provide patients and carers with more support to understand what services are available and how to access them when they need them.

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