Research Gaps

Evidence-based practice relies on current high-quality evidence to define the best approach for the care. Evidence with clinical experience is a key tool for clinical decision-making. Evidence also has a significant role in health care funding, planning and policy. 

Identifying gaps in the evidence provides an opportunity for researchers to target resources into areas of need. Filling these gaps can have a significant positive impact on public health, health disparities, and healthcare costs.

The following summary provides an overview of the key gaps in the evidence relating to palliative care in aged care which were identified during the evidence review process:

• There is little data around the costs associated with palliative care for older Australians and the informal costs borne by families. 
• Little is known about the cost advantages of planned care, cost implications of medically-responsible care and the cost burden of futile medical care.
• There is little economic evidence that informs the palliative care practices for older people in residential aged care or on home care packages. The relationships between direct and indirect costs and care are unclear.
• Our understanding of models of care in palliative care is limited. Future research could identify which models are more appropriate for older people and whether this effects the setting of care; and which models of care are culturally-responsive and which best support vulnerable older Australians and specific disease groups. More research is required to understand the costs, effectiveness, outcomes and benefits of palliative care delivered in residential aged care facilities as more providers are involved.
• There is not yet an agreed set of criteria or processes for referral to palliative care to promote in Australia. Criteria relevant to older people and to aged care settings (residential aged care or for home care packages) are needed. 
• Enrolled nurses and careworkers provide most direct care to older people. Is palliative care in aged care affected by the lack of RNs in service roles or management roles? The role and benefits of the Nurse Practitioner in the palliative care/aged care workforce needs to be better understood.
• The short-term and long-term effects of providing end-of-life care as an older person is not well understood. Are there simple means of evaluating a carer’s health literacy? Will these improve their access to appropriate information or education and improve their ability to care?
• Can telehealth play an important role in supporting older carers or people caring for older people? Telehealth may allow easier access to information and education resources at a low cost but does this suit older carers?
• There is a need for a tool to assess the effectiveness of palliative care education for health professionals. Simulated learning and clinical placement in palliative care needs to be explored in how it can improve competency and confidence in health professionals. 
• How can ED visits be reduced and older adults be better supported in their wish to remain in the place they call home at the end-of-life?
• We know little about whether there is elder abuse in a palliative care context. Neglect, self-neglect, self-harm and refusal of care can be seen as issues in palliative care. More needs to be understood about older people’s capacity to choose and the appropriate elements of the system which supports older Australians.
• More needs to be known about how to best support carers of older Australians as different trajectories to end-of-life and different diseases may present particular requirements. 
• Interventions that best support home carers particularly those in rural and remote areas need to be better understood.
• Respite services are available but respite care (the need for, the uptake, the effectiveness, the benefits) for older Australians receiving palliative care, and their carers, is poorly understood.
• Discussions about preferences and wishes for end-of-life can be difficult and are often avoided. Who can best initiate these discussions? What are the flags that signal suitable time(s) to start or to review care planning and care preferences?
• Burnout and stress are common phenomena in aged care and palliative care. Can self-care for staff be more effective if it is part of health promotion rather than as a means of coping?
• The role of volunteers in providing palliative care and end-of-life support for older people and their families in different settings is still limited. We need to know more about how to best train and support volunteers in palliative care, the cost benefits of using volunteer services, and how to measure the success of volunteer programs.
• How can regional or stand-alone aged care services be best supported to provide care reflecting specialist or essential palliative care?
• An ever-increasing number of older people with palliative care needs live at home with home-support services. There is a lack of evidence in the service gaps of care coordination.  The identification of the triggers for decline and how these affect onset of palliative care and the goals of care are also not well understood.
• Care coordination across all palliative care settings is important, particularly during the transition between settings, such as in acute care admissions or placement in residential aged care(RAC). Further investigation of pathways which identify older adults suitable for referral to palliative care services including clarification of personnel that can initiate referral, could strengthen the quality of care, satisfaction with care and the likelihood of death in the place of preference.
• Guidelines that incorporate deprescribing are greatly needed, particularly when counterbalancing clinical practice guidelines that recommend the initiation of preventive medication therapy without consideration of multimorbidity, advanced illness, or limited life expectancy. 
• For end-of-life situations, very little rigorous research has been conducted on reducing inappropriate medications in frail older adults where multimorbidity and polypharmacy are common.
• While recognised as important, there is little agreement on what goal setting in palliative care is, what it does, or how it should be delivered. Research of high-quality is needed to strengthen our understanding of the benefits of the early initiation of discussions of goals of care and end-of-life decisions.
• There are some significant knowledge gaps about the law on withholding and withdrawing life-sustaining treatment from adults who lack decision-making capacity. What steps can be taken to improve doctors’ legal knowledge in this area and to harmonise the law across Australia?
• There is limited evidence that describes the efficacy of allied health interventions (physiotherapy, occupational therapy, speech therapy, social work, psychology, dietetics, music therapy) with older people receiving palliative care. 
• There is a paucity of research on advocacy for older adults receiving palliative care. Although the potential for vulnerability is recognised - advanced age; advanced illness; comorbidity including cognitive impairment or other ‘capacity’ issues; confusion surrounding aged care reforms, financial concerns - there is a need for clarity about the problems that require advocacy for older Australians receiving palliative care.
• The terms grief and bereavement are often used interchangeably and are not always clearly defined in the literature. The bereavement process, particularly in older adults, remains an area where more understanding is required. Particular attention could be paid to the long-term impact on grief of family members of older people and the results of interventions providing post-death grief and bereavement support.
• Clinicians want and need more evidence-based guidance and education on how best to discuss end-of-life matters with people and their significant others. Future research could inform which educational strategies work best and the possible cost-savings of health professionals enhanced communication skills i.e. as a result of dying in place, fewer acute care admissions or unnecessary treatment
• Prognostication in older adults with multimorbidity remains poorly understood. Further investigation is needed to help our understanding of clinician-related factors, such as how clinicians use prognosis to inform treatment plans, how clinicians can incorporate prognosis into clinical decision-making for older adults with multimorbidity, and what methods are used to communicate this information to the individuals concerned and their families. 
• Does frailty attenuate the views and wishes of an older person at end-of-life? Are frail older people marginalised during the decision-making process? Research answering these questions will address practice and policy of patient agency in end-of-life decision-making.
• Currently there is a lack of good-quality evidence in relation to older people at end-of-life to inform clear criteria for commencing and ending nutrition support, understanding for which patients it would be most appropriate, and how this treatment is evaluated.
• We know little about how others influence the wellbeing and self-perception of a person at the end of their life. 
• Quality of life (QoL) is the main goal of palliative care yet there is very little high-quality literature and often QoL is measured using different tools. 
• Although dignity can be considered to be an intrinsic feature of human life, it is a complex, multifaceted and dynamic concept linked to the notion of personal identity. A more in-depth understanding may help patients with a life-limiting illness come to terms with end-of-life. 
• Resilience in older adults in a palliative care context presents significant opportunity for future research. Important aspects of future research are the factors affecting resilience in older adults in residential aged care across the continuum of the palliative care journey, and the role of social networks and community supports in enabling the resilience of older people living in the community at the end of their life
• There is a lack of quality evidence addressing the social support for older people receiving palliative care which raises the need for further research into the evaluation and provision of social support to CALD and other special needs groups, in rural and remote communities, and which addresses the diversity of aged care residents.
• Higher quality research is needed to build the existing evidence base for spirituality and spiritual care for older people in a palliative care context. It could also be extended to include new issues such as complicated grief and spiritual support for carers and family of older people at end-of-life.
• More quantitative research is needed to determine for whom, by whom, how, when and under what conditions spiritual care is most beneficial.
• Complementary and alternative therapies are commonly as an adjuvant to conventional medical intervention. The use, benefits, risks, safety and effectiveness of complementary therapies and complementary and alternative medicine (CAM) for older people receiving palliative care is not well understood.

Page updated 04 August 2017