Considering the trial presented in Studies II–IV, it is not possible to clarify whether inadequacies in training contents, the chosen learner-centered approach, lack of support for implementation or the exclusion of some important intervention components were the reason for the lack of effect.
When looking at the bigger picture, several if not most aspects of care-quality improvement appear to be outside the scope of most interventions. Froggatt and colleagues have highlighted such necessary changes at all levels, from legislation, through long lasting support and leadership in facilities, to minimum staff competencies, staffing ratios and other resources in daily work (Froggatt et al. 2020).
A study carried out to investigate nurse participation in EOL care revealed that most front-line staff still associate palliative approaches with the treatment in the very last days and they consider that decisions about EOL care are made in formal gatherings and mainly by staff members with more medical expertise (Sutherland et al. 2019). Such misconceptions are likely to be slow to change. In addition, the investigators noted that organization of daily routines, and caring cultures, were based on a biomedical model of care focusing on diagnoses, vital signs or eating, with less emphasis on personally significant information gathered through discussions with residents and their families (Sutherland et al. 2019). The dominance of the biomedical model has been challenged by the person-centered care philosophy and ideals originating from the hospice movement. Promoting person-centered care in LTCFs seems useful as regards residents’ benefits, and staff work satisfaction. It also gives a clearer model of the special skillset required in LTCFs, possibly increasing overall appreciation of LTCF work (Rokstad et al. 2013). There is an increasing research interest in person-centered care, but EOL care outcomes are rarely studied, resulting in a gap in knowledge. While good medical care and person-centered palliative approaches can indeed co-exist, some of the interventions such as “timely treatment initiatives” employed by INTERACT and several other interventions can also have negative effects. Despite their aims of increasing the chances of treating residents in their facilities, without adequate resourcing and culture changes, they might in fact medicalize residents further. It has been discussed that medical measurements can lead to staff more probably misinterpreting residents’ normal conditions as abnormal, and make staff more likely to consider them sick and needing hospital transfer
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(Temkin-Greener et al. 2017). The dangers of putting staff under too much pressure have been noted in several intervention studies carried out with the aim of increasing person-centered care. Tools to support person-centered care often benchmark direct staff behavior and interactions with residents, which can be inherently stressful (Rokstad et al. 2013). Similar issues were seen in one of the trials in Study I (Husebø et al. 2019). Evoking stress and anxiety among staff members already facing the complexities of an under-resourced facility environment should naturally be avoided.
Training staff to recognize EOL needs cannot lead to benefits to residents if resources to meet these needs are not available. A critical resource for care is staffing. In the US, facilities where staffing ratios were considered adequate have performed better in most aspects of care processes (Temkin-Greener et al. 2009). Similar concerns have been raised in Europe regarding austerity policies, as they may compromise LTCFs, limiting staff and material resources, negatively affecting institutional cultures and challenging professional health-care ethics (Owens et al. 2019). In health-health-care systems where hospice services are financially detached from the care facilities (e.g. the United States) it has been noted that increasing external hospice involvement decreases the likelihood of hospitalization and improves adequate pain management (Miller et al. 2001; Miller and Mor 2004). In addition, hospice service use has been seen to improve proxies’ evaluation of care quality and also improve staff confidence in EOL care (Gonella et al. 2019a). In Finland, a recent government recommendation on the provision and improvement of palliative and EOL care, considers many the mentioned barriers (Saarto and Finne-Soveri 2019).
It aims to strengthen palliative care training in undergraduate and postgraduate health-care professionals’ curriculums, organize support for LTCFs through palliative care centers in all hospital districts and organize advanced medical assistance for LTCF residents in EOL care through a network of hospital-at-home services (Saarto and Finne-Soveri 2019).
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7 IMPLICATIONS
The results of the studies in this thesis imply a need for further development of effective and feasible ways to improve EOL care in LTCFs. Many of the investigators aiming to improve care state, that their interventions are evidence-based, but the quality of such evidence can be questioned on the basis of the findings in the present studies.
In the absence of a solid evidence base, the few rigorous examples of interventions showing resident-level effects should be replicated and developed further. The results of Study I suggest that such interventions included ACP promotion activities and external palliative care experts providing counseling. However, establishing how these interventions work in different settings, and which intervention components and implementation strategies are most effective, as well as their cost-effectivness remain unclear.
Noting the tendency in previous studies to move towards complex interventions, and the somewhat more likely effects of less complex interventions, suggested in the present study, previous manners of developing interventions can be challenged. In particular, when novel intervention contents, training methods or implementation strategies are supported with valid theoretical backgrounds, striving for complex interventions is not likely to be beneficial. In future studies investigators should strive to find the most effective aspects of both feasible real-life interventions and more complex quality improvement projects in order to ensure good end-of-life care for the growing population of LTCF residents. Moreover, it might be beneficial to investigate how to best motivate cultural change and ownership of development in end-of-life care so that these aspects become key to the running of LTCFs.
Measuring resident-level outcomes is also paramount in future research.
However, with previous research clearly indicating the difficulties in obtaining resident-level effects, it is important to assess outcomes in relation to the implementation process as well. Integrating person-centered care in future EOL care interventions, as well as including EOL care related resident-level outcomes in trials of person-centered care is suggested. The absence of such studies was noted, even though person-centered care is highly likely to affect care quality.
With national policies aimed at improving palliative care in all settings, and to provision of palliative care in all LTCFs, a more substantial role to EOL care topics needs to be emphasized in the curricula of nursing and medical studies.
The fact that most present interventions fail to improve care significantly is crucial to the development of future policies. In the creation of such policies, and in decision-making, consideration should be given to how the current deficiencies in proper legislation, staffing resources, staff competencies, and staff turnover, and lack of general continuity in long-term care facilities act as major barriers to improvement of care quality despite academic and practical efforts.
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8 CONCLUSION
1. The effects of previous trials, summarized in the systematic review (Study I), were mild and controversial. In the review we explored available evidence from cluster-randomized controlled trials with staff training interventions aimed at affecting resident-level outcomes (quality of life, quality of dying, symptoms, proxy satisfaction and hospitalizations). If education alone represents a highly effective means of intervention to improve residents’ end-of-life care, this systematic review of 16 trials should have shown more positive findings. The pedagogical and theoretical backgrounds of training interventions were rarely clarified. No specific methods for training were more common in successful trials.
2. The chosen training intervention based on constructive learner-centered methods, adult education, and reflective learning was considered feasible and received favorable feedback. The randomization at facility-level resulted in balanced group allocation for most resident characteristics.
3. The intervention, tested in a rigorous randomized controlled trial design, did not produce significant changes in its’ primary outcomes.
Quality of life, hospital days, emergency department visits, and costs of hospital care did not differ significantly between the intervention and control wards.
4. Furthermore, the intervention resulted in mild effects on residents’
symptom burden at 6 months, but no robust effects on psychological well-being or on proxies’ satisfaction with care.
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ACKNOWLEDGEMENTS
First of all, the role of my supervising Professor emerita Kaisu Pitkälä towards the completion of this thesis cannot be underestimated. Since entering the Department of General Practice and Primary Care, in search of research possibilities, she has guided me through research practicalities and methodology, leading the way with her effortless attitude towards producing world-class academic papers. Above all, the deep humanity inspiring all her academic efforts is awe-inspiring. Professor Jouko Laurila and Docent Marja-Liisa Laakkonen have had a triple-role in my life during these years, supporting and offering assistance as my advising supervisors in academic work, as co-authors in several publications, and as senior clinicians offering their generous consultation and mentoring in clinical geriatrics. Also, Professor Harriet Finne-Soveri and master-biostatistician Hannu Kautiainen, both co-authoring several publications and offering their vast expertise, have made the research process run smoothly. You have all helped me to find my place in clinical and academic work – where new possibilities seem to emerge under every stone I turn.
I am grateful for the possibility of obtaining a medical training enabling me to work part-time and being able to pursue my academic interests, without the ubiquitous economic constraints experienced by the majority of researchers.
My employers in the City of Helsinki Hospital, Geriatric clinic and Health Center services are acknowledged for their flexibility. The research has also been supported by scholarships from Helsinki University Hospital, the City of Helsinki, the Uulo Arhio Foundation, the Finnish Medical Foundation, and the Foundation of General Practitioners in Finland. Finalizing the project was done while working as a primary care researcher at the Helsinki University Hospital.
The possibility to attend the courses organized by the Doctoral Programme in Population Health as well as the Primary Care Research training lead by Docent Helena Liira and Professor Kaisu Pitkälä at Helsinki University was vital in establishing initial research networks and building research competence. Since then, the conferences and related communities of EuGMS, IAGG and EGPRN have provided important international points of view. The intensive review process of this thesis, together with Professor Juho Lehto and Docent Reino Pöyhiä, has certainly been among the most influential academic interactions I have experienced. Offering their vast knowledge of palliative care and the related research methodology, the process greatly improved my confidence regarding the thesis and my academic abilities. I thank Carol Ann Pelli and Nick Bolton for their work, helping me towards writing better academic English. Kristo, thank you for you art.
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My mother Silja, you have shown me an attitude towards working, and life, where you are both curious and interested in everything, and simultaneously you trust your ability to cope with any challenges you choose to. My father Jukka has set the idea of academic work into my head. The value academic pursuits has stuck in me, even if I must have been warned about the labor involved, as I witnessed you working on your PhD during countless years during my teens. Katariina, Ronja and Toini – our life together – so vivid in its emotions, could offer grounding to much greater endeavors than I will ever be capable of. I am grateful for having you in my life.
Maunula, December 2021
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