Abstract
The end results of the Covid-19 pandemic are as yet unknown. However, even at this stage there are outcomes that command the attention of the nursing profession, both the research side and the practice side. By 14 July 2020, 5455 people in Sweden had died infected with Covid-19 and, of those, 2505 lived in what would internationally be regarded as nursing homes (45.9%). In addition, another 1316 individuals, living at home with the support of public home care and services, died. The reports were a shock to the public and rightfully received a lot of attention in the Covid-19 debate. This scenario is not perhaps unique to Sweden; reports from other countries provide similar information. The statistics raise many questions: How could this happen? Where is the voice of the nursing profession? What is happening in nursing research? Is it focusing on what is going on in practice?
The end results of the Covid-19 pandemic are as yet unknown. However, even at this stage there are outcomes that command the attention of the nursing profession, both the research side and the practice side. By 14 July 2020, 5455 people in Sweden had died infected with Covid-19 (it should be noted that this figure denotes the number of people who died with Covid-19; not necessarily from it. These deaths should have occurred within 30 days of infection with Covid-19 being confirmed), and, of those, 2505 lived in what would internationally be regarded as nursing homes (45.9%). In addition, another 1316 individuals, living at home with the support of public home care and services, died. 1 The reports were a shock to the public and rightfully received a lot of attention in the Covid-19 debate. This scenario is not perhaps unique to Sweden; reports from other countries provide similar information. 2 The statistics raise many questions: How could this happen? Where is the voice of the nursing profession? What is happening in nursing research? Is it focusing on what is going on in practice?
It very soon became obvious that this grim situation developed, among other things, from a lack of knowledge about safety, poor hygiene routines, low level of training in nursing care, ignorance of how the staff should protect themselves and others once the virus had entered a unit etc. Authorities rapidly developed ICT-based courses, with instructions on how to use personal protection equipment (PPE) as well as on cohort care. In fairness it should be said that there was a shortage of PPE and supply to nursing homes was not given top priority. The authorities also emphasized that care should be person-centered, but it was not made clear what was meant by this. Patient-centered care has been promoted for some years, for instance as one of the core components of nursing care, where it has been placed at the top of the list, above safety. 3 The results of research attempting to prove that person-centered care improves practice have been overwhelming. It is widely put forward as the model to use in the care of people with dementia diseases. This group make up the great majority of those living in Swedish nursing homes and thus person-centered care is particularly important in that context. In addition to dementia, this nursing home population suffer from a number of other health problems, making them especially vulnerable or frail. Recently a literature search indicated that there are more than 200 systematic reviews of person-centered care, with diverse outcomes and methods for providing evidence of its effectiveness. Some of the systematic reviews point out that methodological problems 4 make it difficult to draw firm conclusions. In other studies not based on the concept of person-centered care, it is nevertheless concluded that person-centered care could have solved the problem. 5 It is also hard to follow the re-interpretation of earlier studies as being supportive of person-centered care, as neither the aims nor the results of the studies included in the systematic review are presented. 6 The research question in a systematic review by Gwernan-Jones R et al. 6 was: What is the experience of hospital staff caring for people living with dementia? However, the main outcome turned out to be that hospitals can improve staff experience of caring for people living with dementia by fostering person-centered care. The trustworthiness of this synthesis was lost in the absence of descriptions of the studies. In addition, it is striking that the frailty, physical as well as mental, of the participants and the role of nursing care in treating and protecting ‘the body’ are largely absent in these studies.
Despite the vast number of studies, the concept of person-centered care is far from being clearly defined. Thus, it is also not clear how to operationalize it in research or how to implement it in practice. Some definitions emphasize the nurse–person relationship, e.g. McCormack and McCane, 7 as does the definition by Brooker and Latham 8 in the VIPS framework (valuing people, individual lives, personal perspectives and social environment). An expert panel set up by the American Geriatric Society found 25 definitions of the concept, and came up with a comprehensive plan for how to implement their own definition (based on the earlier ones). The panel agreed that implementation should include the following elements: an individualized, goal-oriented care plan based on the person’s preferences; ongoing review of the person’s goals and care plan; care supported by an inter-professional team of which the person is an integral team member; one primary or lead point of contact in the healthcare team; active coordination among all healthcare and supportive service providers; continual information sharing and integrated communication, education and training for providers and, when appropriate, the person and those important to the person; and finally, performance measurement and quality improvement, using feedback from the person and the caregivers. 9 Interestingly this extensive implementation plan does not focus on physical and mental health problems but on empowerment and organization. Drawing on 17 studies included in an integrative review, Byrne et al. 10 attempted to find a general definition of the concept relevant to its operationalization and implementation in nursing practice. Three main themes with sub-themes were reported: People, meaning recognizing uniqueness and establishing partnership; Practice, meaning doing and space to practice; and finally, Power, meaning power over one’s care and power to practice person-centered care. Researching these comprehensive concepts is far from easy even when focusing on only one of them, and even more so when focusing on all three at the same time. The patient’s power, uniqueness and the organization seem to be in focus. It is striking that bodily or physical aspects are not addressed; these are apparently taken for granted.
Internationally, as well as nationally, the acceptance of person-centered care, at least at the political and management level, has been successful, despite the lack of an accepted definition and what it means in practice. The Swedish care handbook puts forward the idea of partnership, using the patient’s resources and participation, but there is no clear description of how this should be implemented. It does state, however, that the implementation and effect need to be investigated in more methodologically robust studies. 11 The umbrella organization for providers of healthcare and social service in Swedish counties and municipalities (SKR) 12 decided in 2015 (dnr 15/4295) that the development of all healthcare and social service should be directed towards person-centered care. Most noteworthy is that the report states that ‘a national definition would facilitate (implementation)’ and that the existence of multiple definitions complicates implementation. 12 It is remarkable that a decision was made about implementing a concept throughout the entire Swedish system despite the lack of an agreed definition. However, in a sense, some aspects of person-centered care had already been decided on in the law regulating Swedish health and medical service 13 which lays down that healthcare should be characterized by respect, equal value, dignity and that those in greatest need should have priority. The law also stipulates good quality, good hygienic standards, ensuring the person’s safety, continuity and security, respect, self-determination and integrity and good contact between patient and staff. Thus, operationalization of what is already stated in the law would be a shortcut to securing the patient’s power and perhaps also to what is meant to be included in the concept of people, as described by Byrne et al. 10
There may be a fundamental contradiction inherent in this humanistic vision of person-centered nursing care stemming from certain aspects of nursing home care. This contradiction includes the regulations controlling the system, a pattern of power distribution that is not so easy to surmount, with aspects that concern the macro, meso, and micro levels of the entire organization, i.e. applying ecological system theory. The tragic outcome of Covid-19 would not have been averted by person-centered care as described in the literature so far. It is also not known whether such care was actually already implemented in the units severely hit by the pandemic. The strong belief in the concept as a solution to all the problems may, however, hinder other very important problems from surfacing. At a macro level, public home care and nursing home care come under the regulation of the Social Services Act. 14 A reform in 1992 moved responsibility for care and service for older people to the municipalities and, if needed, they were also made responsible for establishing a care plan for the users (the term patient was abandoned with the reform and replaced with the term user in Swe brukare) together with the healthcare system. The Health and Medical Services Act was made subordinate to the Social Services Act. The main paragraph in the latter Act states that service should be based on democracy and solidarity, it should support people’s economic and social security, equality regarding living conditions and active participation in society. Regarding older people, the Act stipulates that services should be directed towards enabling them to live a life with dignity and wellbeing, promoting the possibility for them to live independently and safely and to lead an active and meaningful existence in community with others. Thus, the problems of older people, in terms of what the Act addresses, are primarily regarded as social and not health issues, and decisions made are not about self-determination. 15 This change may have had an important impact on the development of care and social service for the elderly in Sweden and on the failure to protect them when the pandemic hit the country. The availability of service at home or in a nursing home is based on decisions made by local authorities and on the intention of the Act but also on economic resources (meso-level). 15 Before the 1992 reform, the daytime staff–patient ratio was 0.6–0.7 and the staff educational levels were primarily licensed practical nurse or licensed mental practical nurse, and registered nurse (20–30%). 16 For the years 2017–2019 the daytime staff–resident ratio is reported to be 0.3; the highest level of health education among basic staff is reported to be licensed practical nurse (LPN) and the lowest nurses’ aides, with or without any health education. 17 The number of registered nurses is reported to be 0.04 per resident and they seem commonly to be employed as medically responsible nurses, not in daily management, and are thus not included in the basic staff. The turnover rate among registered nurses was 15%, indicating a problem, but LPNs also had a turnover of 9%. Quite a few of the staff held temporary positions or were on hourly contracts and, according to IVO (Health and Service Inspectorate) (www.ivo.se) in 2018, 30–40% had no basic care training. 18 Thus, over the years there has been a big change, not only in terms of regulations but also in terms of competence, staffing and working conditions. At the system’s meso level the competence as well the number of trained personnel per user has decreased and the organization is distancing the staff with knowledge of medical and nursing care problems from the user. This raises questions about what can be expected and done at the micro level concerning the working conditions, expectations in terms of knowledge about health problems, frailty, overcoming communication difficulties when people suffer from severe dementia etc.
According to the regular inspections of care and social service carried out by IVO, harm caused by care and poor conditions, which could have been avoided, amounts to violation of safety. One example cited is that the staff failed to identify symptoms and physical injuries or diseases, such as fractures, sepsis etc. in those with a dementia disease. The needs of these users are not met because of problems of coordination within and between the groups providing care. Acts of cruelty are mentioned; such assaults could be physical, social, psychological or economic. IVO also points to the lack of competence among the staff. 18 In 2019, IVO remarked that care should be person-centered, explaining that it should be based on the needs, preferences and resources of the individual. The observations in 2019 are similar to those reported by IVO in 2018 but with the addition of mistakes in handling medicine, the risk of accidents and injuries due to technical aids being wrongly handled or people being moved in ways that were unsafe, the unlawful use of restraints and language barriers leading to communication difficulties. Again, assaults were presented as a problem, as was competence. 19 It should be noted that the observations do not apply to all 1700 units for older people in Sweden. IVO’s responsibility is safety and identifying mistakes, but it also raises concerns in terms of protection from infections. The point-prevalence of compliance with basic hygiene and dressing routines in 2020, based on observations, was 59%. This means that the staff followed the requirements for hygiene and dressing 20 only 59% of the time. Since these facilities are financed through taxation and contributions from the individual, one might expect high quality care and service in all of them. One would expect them not to be causing harm. Apparently the most prevalent problem in publicly financed care and social service for older people lies in what is lacking: safety, prevention of harm, physical care that is up to standard, and respect for them as people, demonstrated in abusive behavior. IVO did not address the relationship between safety and person-centered care or how the Act, the decision system, the organization, the competence and staffing may prevent lack of safety. Seemingly there is also a lack of research. An interesting umbrella review of systematic reviews on person-centered care concerning individual safety was, however, published in 2020. In all, 16 systematic reviews were included 21 of which about half addressed people living in nursing homes. The safety issues evaluated were mainly falls, infections that were not detected or treated, hygiene or the like. The umbrella review states that, as there is so little research focusing specifically on person-centered care and safety, no conclusions could be drawn regarding practice.
It may be important to state that I do not believe person-centered care caused the negative outcome from Covid-19 in nursing homes, nor do I believe that it impeded the tragic result. I think that the suggested core components of person-centered care – person, practice and power – have an important role to play in people’s health, but they do not prevent lack of safety and bodily harm. However, I believe that these components need more examination; we need to ask for instance when, how, for whom, and so on, resources are needed. But most of all, we need to explore what constitutes the main problem in poor outcomes. Regarding nursing home residents, there may be a conflict between extensive research claiming evidence for the efficacy of person-centered care and the current severe pressure on care and social service in homes for older people in terms of competence, staffing, management and very frail users. The research on person-centered care does not only fail to solve the main problem, which may be systemic, but also ignores the physical conditions, the body and the safety of the person concerned. The body is ‘the instrument’ by means of which human beings reach out, fulfill their goals and desires. For some reason I have the impression that it is not a top priority in nursing care and research and is not reflected in the person-centered care discourse. The failing body needs attention and to be cared for and protected, from a pandemic like Covid-19, for instance.
The abundant research and seemingly, from time to time, the social pressure to incorporate the notion of person-centered care into all kinds of research questions, might lead one to consider the risk of it becoming a buzzword that no one dares to criticize but to which everyone imputes their own interpretation. Such a development would make the term meaningless. Even more importantly, preoccupation with it would take research attention away from other vital issues, such as the conditions under which care in nursing homes is provided. We need to know more, for instance, about how some notion of person-centered care is working in relation to marginalized people, those less fortunate in social, economic and educational terms or how it works in relation to people brought up in more authoritarian contexts or in emergency situations. A more critical discussion would be helpful in supporting relevant parts of it, in relevant contexts, and in ensuring that other important research questions are not overlooked. Despite some claims that the term covers everything, seemingly safety, body and frailty are not given much attention, nor are the regulations and organizational hindrances. Research also needs to take into consideration what is already going on rather than assuming that what is going on is wrong, leading to ‘throwing out the baby with the bath water’, which in a sense denigrates those working in the healthcare and social services.
It is relevant to ask whether nursing research is focusing on the true needs of contemporary care and service for older people. The intention of the Social Services Act, the changes over the years, the level of training/competence, the staff–user ratio and their working conditions lead me to ponder over what the top priority should be. Strains seem to be present at all levels, macro, meso and micro, indicating the existence of systemic problems at macro and meso levels that have severe consequences at the micro level, where care and service are actually provided. As nurses we should make our voices heard in protest against the conditions under which people with low or no education must work. Not having the proper working conditions, education and means to provide good quality care every day is not acceptable, and is harmful to both staff and care recipient. In the situation we find ourselves in today Restoring trust: Covid-19 and the future of long-term care, published by the Canadian work group on long-term care, is an inspiration. 2
Conflict of interest
The authors declare that there is no conflict of interest.
