Introduction
Advanced and terminal illness can be distressing and call for families to have to make difficult decisions. Case conferences can help consensus to be reached in choices for palliative care in line with a person’s preferences. They can support families to better or fully understand the clinical situation and available options, and identify realistic goals of care whilst also assisting people to deal with their own distress.
Quality Statement
Very little relevant literature was retrieved which focussed its attention to case conferencing in the palliative care of older people. Systematic reviews which did, describe case conferencing in the care of people with dementia [1,2] or advanced dementia [3] and an Australian RCT protocol was also included for context. [4] Other reviews considered case conferences in palliative care without a particular population of interest. [5-8] One review with a focus on aged care but not palliative care was included. [9]
Most systematic reviews were of acceptable to high quality. [1-3,5,7,9] One review of low quality is included to provide context. [8] Three reports [10-12] and publications relating to a recent Australian RCT [4,13,14] are included to provide context to this topic.
Clinical guidelines for conducting family meetings within the context of the specialist palliative care setting were developed in Australia in 2008 [6] and have not been updated. No other guidelines were found. One author notes that although certain end-of-life (EoL) guidelines recommend that family meetings should be routine part of palliative care, there is little standardised guidance as to how to structure these meetings. [5]
Evidence Synthesis
The terms ‘family meeting’, ‘case conference’, ‘family conference’ and ‘team meeting’ are used interchangeably in the literature. These meetings may include the person receiving palliative care and/or key family members and substitute decision-maker(s). The number and range of health professional involved may vary. In some instances, it may be a meeting of only health professionals. There does not appear to be a clear definition, and such meetings show considerable variation, making comparison difficult [2,3,7] or are poorly described in the literature. [2,3]
Usually in practice, a distinction between a family meeting and a case conference is made around the focus of the meeting. A family meeting is more focussed on the family needs and a case conference is more around the clinical goals of care.
Case conferencing in palliative care setting
End-of-life care for older Australians should be consumer-centred, goal-directed and compassionate. [11] Effective and consistent communication is central in supporting the needs and concerns of patients and their family during the palliative and end-of-life (EoL) phases of a life-limiting illness. [1,5,7,10,11] Whenever possible, patients, key family members, substitute decision-makers and carers should be present during end-of-life discussions and involved in the planning of care [7,10] and care should reflect the outcome of these discussions. [11]
The Australian Guidelines for Conducting Family Meetings in Palliative Care [6] were published in Australia in 2008 and have not been updated. Despite family meetings being commonly used and perceived as an important communication tool, useful in planning quality care in the palliative care setting, Hudson et al. [6] found little evidence. These guidelines, based largely on consensus-based expert opinion, offer a framework for preparing, conducting and evaluating family meetings in a palliative care setting.
Almost a decade later, the evidence to support the use of case conferences to address patient and family needs in a palliative care setting is in general, low-level. [5,7,8]
Cahill et al. [7] reviewed the evidence supporting family meetings (case conferences) as a strategy to address the needs of palliative patients and their family. This review includes 10 quantitative and 3 qualitative studies all relative to a general/non-specific adult population. Studies using a validated outcome measure demonstrate no benefits for patients and limited evidence for benefits for families. Few qualitative studies demonstrate positive effects on patient and family outcomes and limited qualitative evidence supported the benefits for participating clinicians. Only two studies provide evidence of health service benefits that were restricted to Surgical Intensive Care Units. These authors note the lack of consistency in the rationale, processes and components of case conferences in the included studies.
Cahill et al. [7] recognise that family meeting provide a forum for patients and their family, in collaboration with clinicians, to discuss and address some of the key components that contribute to a “good death” and that patients should be offered the opportunity of participating in family meetings.
One RCT cited by Philipps et al. [3] demonstrates that case conferencing is feasible in a regional Australian community palliative care setting. This study shows greater GP engagement and enhanced patient-centred care planning. Another RCT cited by Philipps et al. [3] reports improved physical and mental wellbeing of patients and positive results for carers. Both RCTs were conducted in a specialist palliative care community setting with adults most commonly with cancer.
Singer et al. [5] note that case conferences can be challenging and require certain skills and structure to be effective or successful. These authors reviewed the tools available to aid the conduct of family meetings in palliative and intensive care settings. They note that many of the identified tools were not evaluated in the studies and those that were, were in studies of low-quality design.
The majority of identified tools are for health care professionals, few are for patients, carers and families. Meeting guides/agendas are the most common type of tool identified and the authors note that these can assist in structuring the emotionally complex task of communicating about EoL care, support process consistency and support quality improvement in family meeting conduct across settings and health care systems. [5,8] Identified document templates lack attention to follow-up, family questions and concerns, and consistency in communication. The authors caution that overly standardising family meeting documentation templates may lead to the mechanisation of interpersonal communication. Tools to proactively identify patients likely to need a family meeting were only found in the ICU setting. Philipps et al. [3] propose triggers for the organisation of a case conference and this is discussed below.
Singer et al. [5] identify only one tool to help families prepare to participate in a family meeting. Noting that various professional societies highlight the importance of supporting and involving the family at the EoL, they suggest that tools be designed to help families effectively engage with clinicians and participate in decision-making during family meetings.
Many reviews note a major time commitment in the arrangement, conduct and follow-up of case conferences. [1-3,7-9] Singer et al. [5] and Powazski et al. [8] recognise that certain skills are required particularly in empathic communication that acknowledges and minimises stress among family members, and meets basic standards for informed decision-making. Empathic response and reframing is identified as important in all clinical settings. [8] The lack of formal training in conducting family meetings can make health professional feel inadequately prepared to participate in them, which can exacerbate the challenges of conducting them effectively. [8]
Case conferencing in the care of residents with dementia or advanced dementia
Most people with dementia will be cared for at home until their needs surpass the capacity of family and/or community support. [3] Managing advanced dementia in residential aged care is a significant and growing challenge with more than half of all residents in Australian government-subsidised aged care facilities have dementia. [12] A diagnosis of dementia does not automatically exclude the person with dementia from discussions about his or her care but ongoing deterioration makes collaboration between aged care staff, relevant family members and substitute decision-makers more important. [1] Case conferencing can provide a forum for relevant family and the person (if possible) to be engaged with relevant internal (aged care staff) and external (GP, specialist, chaplain etc.) stakeholders to plan care. [3] Preferences for GPs to attend in person or via teleconference are mixed. [3]
The decisions in which family and substitute decision-makers can be involved can include lifestyle choices, medical decisions, care at specific points and end-of-life care. [1] Most commonly, medical and treatment choices are discussed [3] with less attention being given to psychosocial, spiritual and emotional aspects of care. [1]
High-level evidence cited by Phillips et al., [3] Reuther et al. [2] and Low et al. [9] demonstrates that case conferencing can improve medication appropriateness and reduce the use of prescribed antipsychotics of residents with advanced dementia. This evidence was from a RCT in which case conferencing was between members of the healthcare team and did not include the patient or family.
Lower level evidence cited by Phillips et al. [3] suggests that case conferencing improves palliative care outcomes for residents with dementia, families’ satisfaction with communication with aged care staff and families’ perception of the quality of care.
Phillips et al. [3] note that despite the availability of a range of reimbursement items for Australian GPs to support them in providing medical care to residents, their uptake has been very limited. [3] GP engagement in planning residents’ care can increase with the collaborative development of systematic case conferencing processes. [3] Such processes can be the identification of a clear need for the meeting, giving advance notice of the meeting and the involvement of a coordinator throughout the entire process. [3] Case conferencing is seen by aged care providers as an opportunity for collaborative problem-solving, yet, the important barrier, the time needed to organise and conduct case conferences, is shared by both aged care and primary care providers. [3] The collaborative and multidisciplinary nature of case conferences can be hampered by a GP’s poor understanding of the roles of other disciplines and the importance of collaborative care planning. Other health professional’s poor understanding of the reimbursable items may hamper GP participation. [3] Difficulties in dealing with families of a non-English-speaking background are also noted as challenging. [3]
The review by Reuther et al. [2] considers the role of case conferences in managing challenging behaviours of residents with dementia. These authors define case conferencing as a “goal-oriented, systematic method that team members can use to exchange professional opinions on a particular care problem”. In more than half the included studies, case conferences has a positive influence on the challenging behaviour of people with dementia. In one study the reduction in challenging behaviours was 12% and most notably with fear, depression and hyperactivity. In the majority of the included studies, case conferences had a positive effect on staff competence, development and attitude, helping the staff to be more reflective and self-reliant in their work.
As in the review by Cahill et al, [7] many of the studies cited by Phillips et al. [3] and Reuther et al. [2] the format of the case conferences in the included studies is highly variable or poorly reported. This made comparison difficult. More research is needed to strengthen the evidence base.
Agar et al. [4] suggest the following circumstances as dementia-specific triggers for a case conference to be organised and conducted: admission to residential aged care, return to the nursing home following discharge from acute hospital, increase in falls, change in clinical status, new/worsening symptoms, poor appetite or skin integrity, annual management plan review, receipt of a complaint, family disagreement about care, and family distress. A pilot study has demonstrated the acceptability and clinical relevance of these triggers. [14] The results of a RCT indicate that case conferencing facilitates a palliative approach to care for residents with advanced dementia. [13]
Petriwskyj et al. [1] describe the importance of discussions between residential aged care staff and substitute decision-makers for residents with dementia. The authors suggest that a meeting on the resident’s admission is important in establishing a good rapport and transfer of information. This meeting could also establish a preferred and effective routine of communication including case conferences to review the resident’s status, identify care challenges, and engage the relevant family in care planning and decision-making.
Evidence Gaps
- Research using robust designs and validated outcome measures is required to assess the effect of family meetings and case conferences on patient, family, clinician, and health service outcomes, including communication between services and within aged care services.
- Research could inform the optimal structure of case conferences (who participates, who facilitates, when and how often they should occur, how appropriate follow-up can be ensured) and the appropriate resourcing that could support case conferences.
- The practical and financial benefits of case conferencing need to be better understood.
- Tools used in the conduct of family meetings need to be properly evaluated and new tools including electronic resources may be developed through future research.
- Our understanding of family meetings and case conferences from the perspective of participants particularly patients and families is poor.
Page udpated 23 October 2017