Background
Previous studies have identified issues with the continuity of care following acute care discharge of people with dementia (PWD), in particular the lack of follow-up care services and the poor clinical outcomes that result [
1]. Carers of PWD are critical to achieving successful transitional care and depend on clearly devised and documented discharge plans. Family support of PWD can, therefore, be hampered by inadequate service planning and continuity between acute, community and residential care settings. Post discharge, the carer role extends beyond providing care in the home; carers also administer medications, arrange health appointments, provide transport to health service providers and coordinate access to and timing of services in the PWD’s home and in community services [
2]. In addition, carers most often take responsibility for recognising and responding to triggers that exacerbate confusion and agitation for PWD; and for communicating information to health professionals to assist them in assessing and communicating with the person (including information on medical history, usual behaviour, stressors, management strategies, and planned services).
Although there may be a range of services planned for PWD, none of them is available around the clock. If the person is discharged back to their home in the community, their carer is expected to take responsibility for their physical, emotional and social care and medical follow-up, often under trying circumstances [
3]. Carers may be dealing with a person who wanders away from home, is active during the night and is significantly cognitively and functionally impaired. The effect of this situation can be carer stress, sleep deprivation, exhaustion, exacerbation of health problems, depression and anxiety [
4].
The issue of how best to provide health and care services for PWD has come to the fore in Australia, with more than 342,000 people living with dementia in a population of 23 million [
5]. The hospitalisation of PWD is particularly at issue, since 30 % of people over 65 years of age who represent 48 % of patient days in hospital 2011–2012, [
6] have a cognitive impairment [
7]. The number of people hospitalised having dementia as their principal diagnosis increased by 19 % between 2004–05 and 2009–10 [
8]. Few dementia-specific discharge programs have been established to ensure their safe transition from hospital to home [
2].
The Transition Care Program (TCP) designed to help older people in hospital return safely to their homes has been evaluated as having limited suitability for PWD, since it requires that the person has the capacity to make decisions, set goals and comply with prescribed therapy and health regimens [
8]. When the person and/or their carer is expected to assume an active role in the transmission of information between different health service providers, or to follow and coordinate a treatment or care plan, there is a high risk for them to have an unsatisfactory transition between acute and community care, a post discharge adverse event and subsequent readmission to acute care [
9,
10]. An adverse event is ‘an unintended injury or complication which results in disability, death or prolongation of hospital stay, and is caused by health care management rather than the patient’s disease’ [
11]. Health professionals in acute care and primary care can undertake post discharge planning and follow-up strategies designed to minimise risks and associated poor outcomes during transitional care, and studying this process can inform the adoption of suitable strategies by health professionals.
A review of 73 studies on communication and information transfer between hospital and primary care physicians identified some major deficits in these processes. Direct communication between these physicians was infrequent (3-20 %) and availability of a discharge summary at the first post discharge visits was 12-34 %. These factors affected the quality of care in approximately 25 % of follow-up visits [
12]. In addition, the quality of documentation on discharge summaries was poor, resulting in missed test results (33-63 %), inadequate treatment or hospital course details (7-22 %), non-provision of discharge medications (2-40 %), no test results pending at discharge (65 %), no patient or family counselling (90-92 %) and no follow up plans (2-43 %) [
12]. Inadequate discharge documentation can give rise to misinformation, duplication of tests or interventions, delayed or failed referrals and potentially, patient harm [
9,
13].
A systematic review of 18 studies that measured the association between continuity of care and patient outcomes, found that increased provider care continuity is associated with improved patient outcomes and satisfaction [
14]. A pressing issue associated with poor hospital discharge for the person with dementia and/or their carer is the failure to ensure that there is a clear understanding of their medication regimen. These people are often discharged with their current medicines and instructions for use, but inadequate time is taken to ensure that the person and/or their carer understand the revised medication regimen. The person and carer are often unsure about how the pre-hospital medication regimen aligns with the current medication regimen, or whether the current or previous regimen needs to be followed [
15]. In addition, people with dementia like many other Australians may also use non- prescription agents, herbal preparations and other over-the-counter preparations that may be contraindicated, or reduce the therapeutic action of their prescription medicine [
16].
A recent study of medication reconciliation for people over 64 years of age discharged from hospital to the community reported that 70 % did not understand the new dosing instructions at discharge [
15]. Given this finding, assessment by community health staff or pharmacist home medicines review after discharge can help to determine the person’s and the carer’s understanding of medication requirements and regimens, and also help to identify issues with use of non-prescription medicines.
These and other failings in hospital discharge for PWD are an issue of concern for their carer and health staff who provide services for them in community and residential aged care facility settings (RACF) [
1]. Effective transitional care for the older person between different health sectors is, therefore, one way of ensuring their post discharge health, function and well-being, especially if they have a cognitive impairment [
1]. Transitional care programs are designed to ensure the coordination and continuity of health care as the vulnerable person transfers between different levels and types of care [
17]. Discharge planning should include a comprehensive package of coordinated care and detailed communication in the discharge summary about the reason for admission to acute care; treatment and assessments undertaken; arrangements made for follow-up services after discharge; and ongoing medication and management requirements [
1].
Effective discharge planning for PWD, therefore, needs to involve community-based health professionals, including general practitioners (GPs), GP practice nurses, community nurses and other community service personnel, RACF staff where relevant, and the carer/s of the PWD. Acute care health professionals involved in discharge planning ideally commence this process from the time the person is admitted to hospital. Frequently the primary focus of this planning is in response to the person’s admission diagnosis and the need for continuity of care following discharge. For PWD it is equally important for post discharge planning to include management of symptoms, as well as ongoing issues faced by their carer/s, and their future health care needs in the context of dementia. The health and well-being of PWD and their carers following hospital discharge is sensitive to the transitional care processes established between the various health sectors [
1] that involve health professionals in hospital and community settings. This study aimed to describe health professionals’ perspectives on discharge planning and transitional care for PWD and their carers in a regional area of Australia.
Methods
Design
A descriptive, exploratory, qualitative research design was used to conduct focus group discussions with health care professionals involved in and impacted by, discharge care planning and the provision of transitional care services for people with dementia (PWD). [
18,
19].
Ethics
Ethical approval was granted by the Hunter New England Health Human Research Ethics Committee and the University of Newcastle Human Research Ethics Committee (Approval numbers: 13/08/21/5.10, H2013-0333).
Participants and recruitment
Purposive sampling was used to recruit volunteer health staff who were involved in discharge planning and transitional care activities in the acute care setting (including five junior medical officers (JMO) and 16 nurses and allied health professionals who were involved in discharge planning in one acute tertiary facility); and the community care setting (including eight GPs and GP practice nurses, and four staff in the residential aged care setting) involved in delivering transitional care. Potential participants were approached either by email or face to face by clinicians from four professional groups (who agreed to contact colleagues for this purpose) and invited to participate, and an information statement about the study and consent form were provided. We were unsuccessful in recruiting geriatricians, other physicians and subspecialist doctors to participate in a focus group.
Data collection
A semi-structured focus group schedule developed by the research team framed the focus group discussions. Questions were derived from the literature on the discharge process and discharge of PWD and were checked for suitability by clinicians involved in discharge procedures. A study advisory committee was established which comprised representatives of the four professional groups and dementia carers. This committee provided comments and advice about the focus group questions, including appropriate wording and topics and suitable focus group structure (acute care and community care groups).
Focus group discussions were conducted at workplace meeting rooms at times that were convenient to the participants during the period December 2013 - April 2014, with sessions lasting between 35–90 min. Experienced members of the research team facilitated the focus group discussions (AK, DP) using the same questions to ensure consistency in questioning style. Discussions were digitally recorded, transcribed verbatim and de-identified in the written transcripts.
Data analysis
Data were analysed independently by two members of the research team (AK, LC). Data were grouped into major content categories and further analyses were conducted using a structured approach described by Sandelowski [
19] and Neergaard et al. [
18], following the approach described by Miles and Huberman [
20], as suitable for analysis of qualitative descriptive data (see Table
1).
Coding and recording reflections on data transcripts | 2 Perspectives: |
1 Acute care perspective (pre discharge, ONE public tertiary facility). |
2 Primary care/RACF perspective (post discharge, from multiple acute care facilities). |
Sorting data to identify topics | Topics: Discharge planning, cognitive impairment, carer involvement, communication and information, assessment, safety, discharge summaries, documentation, medications, post discharge services needed, key people for communication, multidisciplinary, carer needs, GP needs, RACF needs, PWD exacerbations in acute care, pressure on staff, time, expectations, Webster packs, discontinuity of care, access to services, insufficient information, outcomes |
Identify categories and themes | Four main themes identified: |
1 Discharging PWD – The Process (not reported in this paper) |
2 Barriers to effective discharge planning for PWD and their carers |
3 Transitional Care process failures and associated outcomes for PWD |
4 Factors that would facilitate effective transitional care for PWD (not reported in this paper) |
Identifying commonalities and differences among data | Commonalities: Complexity, variation in processes, multiple key stakeholders, patient safety, tensions between health staff in acute and community settings. |
Differences: Acute care HP and Community Care HP Perspectives about transitional care for PWD and their carers. |
Deciding groups and generalisations that are true for the data | 1 Contrasting Pre and post discharge perspectives (Acute care vs Community health professionals) |
2 Processes and stakeholders needs are variable and complex |
3 Barriers to continuity of care occur in acute and community settings |
4 Transitional care process frequently fails and results in poor outcomes for PWD and their carers |
Examining generalisations in the light of existing knowledge | Consideration of results in comparison with previous studies. |
The results of independent data categorisation were discussed and compared by two researchers (AK, LC) to determine the main themes reported by participant groups and the relationships between them were agreed.
Discussion
Transitional care is focused on achieving coordination and continuity of care as patients are transferred between different care providers, to avoid readmission to hospital and optimise health, particularly for vulnerable older people [
23]. When transitional care fragmentation and failures occur, vulnerable people such as those with continuous complex care needs and cognitive impairment are at risk for “falling through the cracks” [
1,
24,
25]. There is no theoretical basis or framework available for evaluating and implementing transitional care programs [
23]. There are two transitional care models that have been demonstrated to be effective from trials: the transitional care model (TCM) by Naylor [
26], and the care transitions intervention (CTI) by Coleman [
27]; and some consensus standards for transitional care have been developed [
28]. However, a systematic review of transitional care programs has determined that most trials of transitional care programs exclude people with cognitive impairment and dementia and high risk older adults [
25].
Previous studies and reviews have identified some essential components for effective transitional care. A study by Wee and Wrijhoef identified four components: identifying patients at high risk for readmission, in-hospital assessment and substantial contact, care planning and post-discharge engagement and follow-up with patients and carers [
23]. Nelson identified four components in the Coleman model: Coaching in hospital, home visiting within 72 h of discharge, medication review and follow up phone calls; and additional components in the Naylor model: nurses in the role of clinical leader or care manager, patient assessment to identify high risk patients, team care planning, home visits, telephone outreach and accompanying the patient to the first primary care follow up visit [
29]. Medication management and review, particularly where polypharmacy is involved, is considered to be critically important during care transitions [
24,
25,
28,
29]. This study identified several previously unreported issues that demonstrate the complexity and challenges associated with achieving these components of transitional care for PWD and their carers.
Issues in acute care
In this study acute care staff described encountering substantial pressure and barriers in their efforts to provide safe discharge planning for PWD. They had significant administrative pressure placed on them to discharge patients early and hospital staff expressed concerns about the risks and safety of PWD after discharge because of their cognitive and functional deficits, and the availability and capacity of the person’s carer. In addition, discharge summaries were mainly compiled by JMOs who generally had limited knowledge of the PWD during their hospitalisation. Consequently, critical information and understanding about the needs of PWD and their carers during transitional care was often lacking, with negative impacts for carers, GPs and RACF staff.
Barriers to effective post discharge planning
Discharge planning was really difficult due to challenges associated with patient risk assessment and the lack of available services for PWD, specifically the need for 24 h services and support. The perspective of acute care discharge planners was that community services are limited, difficult to access, have rigorous criteria for eligibility for a service and often exclude PWD. The systems operating are often not adequate for the needs of PWD and their carers, and there may be long waiting periods for community services that result in delayed or missed treatment. Even when the acute facility has discharged PWD with ideal discharge summaries and follow-up plans, the chances of these plans being executed as intended are unlikely because of the complexities associated with post discharge service access. In addition, and possibly as a consequence of limited services, it was evident that there were tensions occurring between health staff involved in transitional care for PWD in acute, community and residential care settings.
One major issue described in this study was that when cognitive assessments were conducted during hospitalisation, the possible deleterious effect of the unfamiliar hospital environment and care practices, and the potential effects of any new medicines prescribed for the PWD during hospitalisation could be contributing factors to the resultant assessment score. Following discharge, the PWD often had some improvement in their confusion when they returned to a familiar environment, and needed modifications in prescribed medicines (dose reductions or cessation of medications).
Also in the context of high pressure discharge processes, the practice of transferring unwell PWD from hospital to low-care RACFs which have very high resident-staff ratios and limited access to qualified nurses, particularly out of hours, the scene is set for increased patient risk of an adverse event. This situation can be further complicated when discharged PWD are a new admission to RACFs from hospitals, where RACF staff don’t know them, and receive limited discharge information, particularly baseline information about the person’s cognitive, psychosocial and physical capabilities and requirements. The subsequent outcome for the PWD could be extremely negative and very stressful for their carer(s) [
12] with an increased risk of readmission to hospital.
Issues associated with medication management for PWD
Although previous studies have identified medication management as an important component of transitional care, this study has identified issues that are critically important for PWD and their carers (who may also have limited capacity to assist the PWD). The existing processes for provision of prescribed medicines at discharge are unhelpful for PWD, their carers and RACF staff. Routine provision of pharmacy filled medication dose decision aids would contribute to reducing medication risks for these people following discharge. Information provided to patients and their carers should include sufficient information about medications so they know which medicines to take, how to take them and how to obtain them, and should be based on a process of medication reconciliation to adjust for changes that have occurred during hospitalisation [
12,
30,
31]. Improved continuity of care in medication administration, alone, has the potential to improve outcomes for PWD [
2,
12,
14,
30]. In the United Kingdom, a toolkit has been recently released for the purpose of encouraging routine referral of hospital patients to community pharmacists for post discharge assistance with medications [
32]. This initiative could substantially improve patient safety during transitional care.
This study aimed to describe health professionals’ perspectives on discharge planning and transitional care for PWD and their carers in a regional area of Australia. Although some of the issues described here have been reported in some previous studies [
2,
33‐
36], few studies have recognised the impact on PWD due to their increased vulnerability. Previously reported limitations of time, resources, bed availability, administrative pressures and inadequate information about patient needs in the acute care setting, have major impacts on the discharge planning process [
12,
35,
37,
38] and these can potentially result in more negative outcomes for PWD. Resulting outcomes can include: inadequate notification of impending hospital discharge to GPs and the RACF; inadequate documentation in discharge summaries and follow-up plans to enable preparation for and care of PWD after discharge; failed receipt of discharge summaries and follow-up plans by GPs and RACF; delayed or failed delivery of essential community services; deficits in information about medications provided, discontinued, changed or commenced with reasons for these changes; and PWD being given excessive amounts of medication for confusion and/or agitation while hospitalised. In addition, the carer will often need to assume the responsibility for managing and coordinating post discharge services and treatment for the PWD. Improved acute care discharge processes should be consistent with the recently introduced Framework for Integrating Care for Older People with Complex Health Needs [
39] that includes transitional care; and should assist carers to access community based services and resources that can contribute to improved outcomes for PWD [
36,
40].
Strengths and Limitations: The strength of this study includes giving voice to a range of health professionals with different perspectives about the discharge planning and transitional care processes for PWD in the acute, community and residential care contexts. A study limitation was that the voices of specialist physicians were not heard because work pressures prevented them from participating in a focus group or an interview. As the focus group data were provided by a volunteer sample of health professionals in only one region of Australia, the findings will likely be biased and non-representative. In addition, the relatively small sample size and the qualitative nature of the focus group data, may limit the transferability of the findings to other contexts where systems and processes are different. These data, nevertheless, signal the type of health system barriers and failures that need to be remedied to benefit PWD and their carers during hospital discharge and care transitions.
Conclusions
Participants described discharge planning and transitional care for PWD as a complex process with multiple contributors and components. Discharge planners recognised that PWD are vulnerable because of their reduced ability to comprehend and act on discharge requirements, their inability to manage their own care and treatment post discharge and not understanding and/or remembering the events planned to occur on prescribed dates. Consequently, PWD are frequently unable to manage their own medications, other treatments and appointments, and follow discharge instructions. Since not all PWD have a carer, this can have profound implications for discharge planning and provision of services in the community. For PWD who do have a carer, the carer’s knowledge about their social and health history, their usual abilities and responses to stressful situations, and the nature of their psychosocial needs, can be critical knowledge to share with acute care staff in the discharge planning process. Carers can, subsequently, become ‘de facto’ care managers and coordinators in the delivery of community and primary care services following discharge from acute care. It was apparent that health care professionals described engaging in discharge planning and transitional care processes with good intentions, despite having many challenges. They identified significant issues and barriers to this process that can result in poor outcomes for PWD and their carers, and have negative impacts for GPs and RACF staff. This aspect of acute care services requires the attention of policy makers, hospital administrators and hospital staff who care for PWD. The critical issues identified in clinical practice in this study include: pressure on acute care health professionals to discharge PWD early, the requirement for JMOs to complete discharge summaries, the demand for post discharge services for PWD exceeding supply, the need to modify post discharge medication prescriptions for PWD, the need for improved coordination with RACF, and the need for routine provision of medication dose decision aids and home medicine reviews post discharge for PWD and their carers. Future studies should develop needs based innovation strategies to address these identified deficits in transitional care for PWD.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
AK participated in the design and coordination of the study, contributed to data collection and analysis, and drafted the manuscript. LC participated in the design of the study, contributed to data analysis, and to manuscript development and revisions. DP participated in the design of the study, contributed to data collection and analysis, contributed to peer review of analysis and manuscript development and revisions. CH participated in the design of the study and contributed to manuscript development and revisions. All authors read and approved the final manuscript.