Advance care planning in rehabilitation settings
AuthorSong, Krystal May-Jii
Document TypePhD thesis
Access StatusOpen Access
© 2019 Krystal May-Jii Song
Advance care planning (ACP) is the process whereby patients are able to communicate with family and healthcare providers regarding future health care choices in the event that they do not have the capacity to do so. In Australia, people are living longer with an increasing aging population and higher rates of chronic illnesses. Significant costs are involved in managing people with chronic illnesses including hospitalisation, rehabilitation and supportive care. ACP is known as an effective tool used in future care planning, and has many known benefits, including improving patient autonomy, enhanced shared decision-making processes with clinicians, better satisfaction with end-of-life (EOL) care, reduced rehospitalisation rates, and improved quality of life for patients and families. Despite known benefits of ACP, its evidence in rehabilitation settings and in specific populations such as cancer patients remains limited in the literature. There have been previous educational efforts with ACP in outpatient rehabilitation settings such as pulmonary and cardiac rehabilitation. However, beyond this, existing literature remains scarce on overall evidence of ACP in rehabilitation settings, in those nearing the EOL, and in those at risk of cognitive impairment. The main aim of this thesis is to investigate the evidence of ACP interventions in patients with cancer, including those with brain tumours (BT) and in rehabilitation settings. Four studies were developed in this thesis to address current gaps in evidence-based practice in ACP in these populations. A standardised framework was utilised to develop protocols for these studies. Firstly, a systematic review was developed to look into existing research regarding the efficacy of ACP interventions in patients with BT who are often managed in rehabilitation settings, at risk of cognitive impairment and nearing EOL. Two studies were then designed to investigate the experience of ACP in patients with BT. Of these two studies, one represented a pilot study to explore the experience of ACP in patients with BT in a tertiary hospital in Australia, and another was an extension of this study to further explore the experience of ACP in a larger cohort and included carer burden. Lastly, an ACP program was implemented in an inpatient rehabilitation setting in a tertiary hospital setting to address staff and systemic barriers to implementation and to improve ACP uptake. Gaps in evidence in relation to barriers and facilitators to ACP implementation in rehabilitation, and types of ACP interventions that can be implemented were identified and recommendations made to further develop and enhance ACP programs, and guide future research. Study 1 presented a systematic review of ACP in patients with primary malignant brain tumours (pmBT). There was only “low to moderate” evidence for ACP studies in this cohort. Only a single randomised controlled trial (RCT) evaluated a video decision support tool in facilitating ACP in patients with pmBT which showed a beneficial effect in promoting comfort care and confidence in decision-making. Positive effects of ACP included lower hospital readmission rates and intensive care unit utilization. None of the studies assessed mortality outcomes associated with ACP. The study highlighted that although there were some beneficial effects of ACP in pmBT population, the literature remains limited in this area with lack of intervention studies, and further studies with appropriate study design, outcome measures and defined interventions are required. Studies 2 and 3 investigated the awareness and experience of patients with BT in discussing ACP. Study 2, an initial pilot study, investigated the experience of patients with BT in discussing ACP, identified main symptoms experienced, physical and functional status, perceived quality of life (QoL) and level of coping. Qualitative analysis indicated good QoL and the use of problem focused coping strategies, however findings demonstrated limited awareness, understanding and documentation of ACP and variable views on appropriate timing of ACP discussions. Study 3 is an extension of this initial pilot study and further investigated a larger cohort of patients with BT, with the addition of assessing carer burden. The majority of patients had high grade gliomas, and there was a moderate level of carer burden. The ongoing limited ACP discussions between patients and healthcare professionals demonstrate the need for increased awareness of ACP in clinical practice, and also encourages the neuropalliative-rehabilitation model of care approach which integrates care amongst treating teams including neurology, neurosurgery, oncology, rehabilitation and palliative care to be able to provide timely ACP information to patients, This study also highlighted the need for multifaceted system-wide interventions in implementing ACP. Study 4 was designed to develop, implement and evaluate the effectiveness of an ACP program in an inpatient rehabilitation setting. The implementation of this program showed that a structured ACP program is feasible and effective in improving the prevalence of ACP discussions between rehabilitation patients with chronic illnesses and/or multiple comorbidities and rehabilitation staff, however short-term impacts on Medical Enduring Power of Attorney (MEPOA) nomination and Advance Directive (AD) completion rates remained inconclusive. This was the first study using process evaluation in assessing an ACP program and its feasibility. In conclusion, limited evidence still exist with ACP in patients with BT and in inpatient rehabilitation settings. The implementation of a structured ACP program is effective in increasing ACP discussions between rehabilitation patients and staff, and emphasises a multifaceted approach that is required for its feasibility. It is also easily replicated in other rehabilitation settings. Future larger and longer term follow up studies are still required to assess impact on other outcomes including QoL, quality of care and economic costs.
Keywordsadvance care planning; rehabilitation; primary malignant brain tumours; end-of-life care
- Click on "Export Reference in RIS Format" and choose "open with... Endnote".
- Click on "Export Reference in RIS Format". Login to Refworks, go to References => Import References
- Medicine (RMH) - Theses