Original Manuscript
Coercion in nursing homes: Perspectives of patients and relatives
Nursing Ethics 1–12 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014564907 nej.sagepub.com
Elisabeth Gjerberg, Lillian Lillemoen, Reidar Pedersen and Reidun Førde University of Oslo, Norway
Abstract Background: Studies have demonstrated the extensive use of coercion in Norwegian nursing homes, which represents ethical, professional as well as legal challenges to the staff. We have, however, limited knowledge of the experiences and views of nursing home patients and their relatives. Objectives: The aim of this study is to explore the perspectives of nursing home patients and next of kin on the use of coercion; are there situations where the use of coercion can be defended, and if so, under which circumstances? Methods: The data are based on individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 60 relatives. Ethical considerations: Participation was based on written informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics. Results: More than half of the patients and the majority of the relatives accepted the use of coercion, trusting the staff to act in the patient’s best interest. However, the acceptance of coercion is strongly related to the patients’ lack of understanding, to prevent health risks and to preserve the patient’s dignity. Conclusion: The majority of nursing home patients and relatives accepted the use of coercion in specific situations, while at the same time they emphasised the need to try alternative strategies first. There is still a need for good qualitative research on the use of coercion in nursing homes, especially with a closer focus on the perspectives and experiences of nursing home patients. Keywords Nursing homes, coercion, patients, relatives, qualitative study
Introduction In Norway, as in several Western countries,1 different kinds of coercion are regularly applied in nursing homes, especially towards patients suffering from dementia. Studies have shown that about 40% of the Norwegian nursing home population was subjected to some type of constraint over the course of a week.2 The term ‘coercion’ includes all kinds of physical restraints; defined as direct or indirect restriction of
Corresponding author: Elisabeth Gjerberg, Centre for Medical Ethics, University of Oslo, P.O. Box 1130 Blindern, 0318 Oslo, Norway. Email: [email protected]
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activity,3 chemical and environmental restraints4 as well as force or pressure in healthcare or in activities of daily living.5 In spite of the extensive use of coercion in Norwegian nursing homes, this practice has until recently generally been illegal due to lack of legal authority. However, in January 2009, the Patients’ and Users’ Rights Act was supplemented with a new section (Section 4A), regulating the provision of somatic healthcare against the patient’s will.6 The main legal conditions are that the patient lacks the competence to consent, that the care and the coercive measures are in the patient’s best interest and that it is likely that the patient would have given permission for such care. Moreover, before coercive care can be provided, different confidence-building strategies must have been attempted to increase patient cooperation. Shortly after the new section came into force, we carried out a study on how nursing home staff understand and practise coercion, finding that the distinction between coercion and voluntariness can be blurred, and the situations can change quickly from voluntariness to coercion and vice versa.7 The study demonstrated serious legal, professional and ethical challenges.8 It also showed that nursing home staff usually spend a lot of time trying a wide range of approaches to avoid the use of coercion,9 and that when coercion is used, it may be to preserve the patient’s dignity by means of forced hygienic measures.7 Several studies have demonstrated that the use of coercion is experienced as emotionally difficult10 by nursing home staff, causing feelings of shame and guilt,11 and is of the most frequent ethically challenging situations reported.12 Despite a significant body of studies on the use of coercion in nursing homes, knowledge of how the residents and next of kin perceive the use of coercion seems to be limited.13 From an ethical point of view, these voices are necessary to analyse ethical aspects of the use of coercion in nursing homes. In order to examine nursing home patients’ and the next of kin’s views of coercion, it is important to recognise the complexity of these difficult situations and to look more closely at conflicting values when different kinds of coercive measures are applied. The aim of this article is to look closer at these values and to examine nursing homes patients’ and next of kin’s views on coercion through the following research questions: How do they think the staff should handle situations when patients resist medical care and treatment assessed as necessary? Are there situations when the use of coercion can be defended, and if so, why and under what circumstances?
Previous studies To identify relevant literature on the use of coercion in nursing homes from the point of view of patients and relatives, we carried out a systematic literature search using two databases: MEDLINE and CINAHL. The following search terms were used: ‘nursing homes’ or ‘long term care’ in combination with ‘coercion’ or ‘physical restraint’ or ‘power’. The search was carried out in March 2013 and was limited to empirical studies published in English from 1990 to 2013. There was no limitation concerning study design. The first author (E.G.) screened titles and abstracts of the identified references (546 in total) for potentially relevant articles. In total, 16 articles were reviewed in full text, and of these, 4 were included.4,13–15 The search was supplemented by examination of the reference lists of the retrieved articles, from which 2 studies were added,16,17 that is, in total, 6 studies were included.4,13–17 The identified studies all mainly looked at physical restraints, but both the focus and the methods of the studies varied, thus they are not directly comparable. One study had a mixed methods design,16 some were based on qualitative methods4,13,14 and others had used survey methods.15,17 The quality of the included studies was assessed as fairly good; the methods, data and results seem relevant, credible and trustworthy,18 although the sample size in some of the qualitative studies was very small. All the included studies had collected data from relatives of nursing home residents, who were examined either by survey methods15–17 or by qualitative methods.4,13,14 Three studies had also 2
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examined the perspectives of patients using focus group or individual interviews.4,13,16 In two of these studies, the patients had personal experience with being subject to physical restraints.13,16 The results from these two studies demonstrate that coercion may evoke both positive and negative feelings. For example, Hardin et al.16 found that although more than half the patients expressed negative feelings about being restrained, many patients also felt all right or safe afterwards. Also, Saarnio and Isola13 found that physical restraints made the patients feel safer, but at the same time they felt frustration, fear, loneliness and loss of dignity. The studies examining the views of next of kin are not consistent, while some studies have found that next of kin were rather positive to the use of physical restraints,15,17 other studies report that the relatives felt uncomfortable, guilty and helpless14 and had mixed feelings about seeing their loved one restrained.3,16 Both patients and relatives perceive that restraints are used for the safety of the patients.4,13,17 To prevent patients from harming themselves or others is often cited as the main reason for using restraints. However, several studies have documented that physical-restraint use has been associated with adverse outcomes and actually increased the chance of patient harm.1,19 The review revealed that there still is a lack of research relating to nursing home patients’ and relatives’ views about coercion, especially the patients’ perspectives are missing. Thus, there is a need for more knowledge based on their perspectives.
Theoretical frame of reference – conflicting values The reality of long-term care is that most patients become increasingly dependent as their mental and physical functions deteriorate. Their vulnerability has many dimensions not only with respect to their frail bodies but also with regard to the psychological, relational, social and spiritual dimensions of their life.20 These vulnerable patients cannot meet their own needs; they must rely on the goodwill of caregivers. The power imbalance in the nurse–patient relationship contributes to the patients’ vulnerability. This means that they must trust the staff’s interventions to be in their best interest. But what is the patient’s best interest and good care when the patient resists interventions which the staff see as necessary? According to Gastmans,20 the ethical essence of care can be defined as providing care in response to the vulnerability of human beings in order to maintain, protect and promote his or her dignity. Thus, trust and dignity seem to be the key concepts when looking at the views of patients and relatives on the use of coercion in nursing homes.
Trust Trust has been the focus of research in both healthcare and in theoretical disciplines, like sociology and philosophy. Trust as a sociological construct refers to people’s expectation, typically of goodwill, advocacy and competence. As such, it is future-directed, although influenced by past experiences.21 A general understanding is that trust is a basic condition for human interaction, including medical treatment and care.22 To trust is, however, to lay yourself open. When a person trusts someone, he or she is open to a possible course of action that he or she hopes will be according to his or her best interest. According to Delmar,23 trust is a self-exposure since there is an expectation that the other will be receptive to the trust and act in accordance to it. We expect that others wish us well, but we are simultaneously vulnerable to the potential evil purposes of others. Trust is, thus, not always an idyllic phenomenon; it may also serve as a context in which power is exercised. According to Grimen,24,25 power can create trust and vice versa. Reflecting on the relationship between power and trust, he claims that healthcare workers have a form of authority that creates trust. A 3
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sick and dependent person rarely has an alternative; he or she must trust that the caregivers have good intentions, competence and empathy. The trusting patient is placed, sometimes unwillingly, in a position of dependence and vulnerability, grants discretionary power to the staff in order to achieve something he or she desires and expects them to make decisions in his or her best interest. This is a positive kind of power; it is trust that allows beneficial power to exist.26
Autonomy and dignity Over the last decades, respect for patient autonomy and the doctrine of informed consent have by and large replaced a medical ethos founded on trust in the physicians’ decision. The main argument is that medical paternalism is often flawed. Informed consent has been emphasised in most healthcare legislation, and information, voluntariness and competence to consent are generally considered as necessary conditions for a valid consent and to provide healthcare. However, fulfilling all these conditions is often not possible within long-term care. Although nursing home patients may lose the ability to make autonomous decisions, their dignity should still be respected and promoted. Over the last decades, the concept of dignity has become a central concern, especially in relation to vulnerable older people.27–30 Recent discussion concerns how to respect the older people in their daily care and how to avoid violating their dignity.27,30 In his articles on the ethics of autonomy and dignity in long-term care, Pullman28 differentiates between two distinct, but related notions of dignity: ‘basic dignity’ and ‘personal dignity’. The first notion refers to the fundamental worth of all humanity and seems to overlap with what Nordenfelt31 calls ‘dignity of Menschenwu¨rde’. The notion of personal dignity is a more subjective form of dignity, and it is this latter kind of dignity that is the issue when dignity is equated with autonomy. Pullman28 warned, however, against a tendency to equate dignity with autonomy, which is to assume that people who lack the capacity for autonomous choices also lack human dignity. It is in relation to this we must understand the discussion of the potential conflict between autonomy and dignity,30 and the limited validity of the concept of autonomy as one of the guiding ethical principles in long-term care.28,30 That is, how can autonomy guide ethical decision-making when those whose care is at stake often lack the capacity to make autonomous choices? In these cases, autonomy may be superseded by the obligation to act beneficently.30,32 The challenge lies in preserving the patient’s basic and personal dignity while their ability to make autonomous choices deteriorates and when the choices they make can represent a risk to their health, their personal dignity or affect others in a negative way. Thus, cognitively impaired patients often require an increasing degree of paternalistic intervention and support. When the patient lacks the competence to consent and the staff intervene on grounds of beneficence, preventing harm or protecting people against their own expressed will, this is defined as weak paternalism.32 Rather than construing autonomy and this kind of paternalism as being in opposition to each other, an ethic of dignity views them as complementary insofar as both aim to serve, enhance and protect the dignity of patients. Along the same lines, one may argue that to strike a balance between paternalism and autonomy may be an important way to create trust. We have, however, limited knowledge on the positions these theories and values actually have in nursing home patients’ and relatives’ perspectives on coercion.
Methodology The study has a qualitative and explorative design. Data were collected through a combination of individual interviews with nursing home patients and focus group interviews with relatives. 4
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Sample Six nursing homes in four different municipalities in the Southeast of Norway were asked to participate in the study. This convenient sample of nursing homes were selected based on knowledge from other research projects, or because we knew that they were involved in some kind of ethics work. Each nursing home was asked to purposefully recruit patients and relatives who might be interested and capable to participate in the study. The nursing home staff gave a verbal description of the study to patients and relatives and handed out a covering letter with the same information. Because the use of coercion was one of the multiple themes, it was not a selection criterion that patients or next of kin themselves had experienced coercion. The patients. To be included in the study, patients had to have capacity to consent and the ability to engage in a conversation about what is important to them as residents in the nursing home. A total of 38 nursing home residents were interviewed. Two of them had more severe cognitive impairments than expected and were unable to expand on their reasoning. The data from these interviews were not included in the analysis. One resident changed her mind and decided not to participate. Thus, the study sample consists of 35 patients: 27 women and 8 men. The age range of the participants was 68–98 years (mean 86 years). All interviews were carried out in the patient’s room. Each interview lasted between 20 and 40 min. Interview times were intentionally kept short to prevent possible exhaustion of the patient. The next of kin. The persons who were selected for focus group interviews were the relatives of nursing home patients with some form of cognitive impairment. They were spouses, children or other close relatives. The majority of the patients that they were related to had been in the nursing home for 2 years or more. Seven focus group interviews were undertaken comprising 60 relatives.
Interviews The patients. Data were collected using semi-structured interviews with each patient. The interviews were based on an interview guide comprising 10 questions, began with a general question on how they enjoy the nursing home and progressed to more specific questions, of which one focussed on the use of coercion. The question was derived from the findings in an earlier study where we interviewed nursing home staff about their experiences with coercion in nursing homes:7–9 If you were to suffer from dementia and not understand what was ‘in your best interest’, for example, you refused to take your medication, refused to groom yourself or you behaved in a way that others reacted negatively to, what would you want to happen: 1. That the staff does what is necessary, even though it is against your will? 2. That your will is respected, with the consequence that you would not receive necessary medication, or that you would not be cleaned or groomed? The respondents were invited to expand on the issues, describing their views and possible experiences. Two of the authors conducted the first 10 interviews together, the rest were divided between the two of us. The next of kin. The interview guide for the focus group interviews with relatives comprised eight questions, where one focussed on the use of coercion: Disease can lead to a patient no longer understanding what is in their best interest, for example that they refuse to take their medication, refuse to wash themselves or behave in a way that others react negatively to. How do you think health care personnel should handle such situations? 5
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The purpose of using focus group interviews was to develop insight into the relatives’ experiences and views through group discussions33 and to gain a large amount of information in a short period of time. The focus group interviews were conducted by two of the authors, who supplemented each other with follow-up questions. The interviews lasted from 1½ to 2 h.
Data analysis All interviews, with one exception, were audio-recorded with consent from participants and transcribed verbatim. Written notes were taken in one interview that was not audio-recorded due to a broken recorder. The analysis was carried out in several steps. First, all four authors independently read the transcripts and discussed the content both during and after the interview process. This gave us a first impression of each of the main themes in the interviews, but also a broader look at the interviews as a whole. The first two authors have collaborated on the further analysis of the text. This process ensured an intersubjective understanding between us.34 After reading through all the material, the text relating to coercion or pressured action was selected and re-read several times. We also switched back and forth between the selected fractions of the text and the full interviews to look for other statements that were related to the question about coercion. The material was then structured according to categorisation of the participants’ attitudes to use of coercion and situations where they consider the use of coercion as legitimate. The analyses of the data rest on a general reading of the interviews with empirical and theoretical informed interpretations,35 that is, the analyses are inspired both from the interviews, our research on use of coercion in nursing homes7–9 and theories on ethical principles. This is a sort of ‘ad-hoc analyses’,35,36 an eclectic form of generating meaning in qualitative texts.
Ethical considerations Written informed consent was obtained before the interviews from all participants. Audiotracs were erased at the end of the study. The study was approved by the Regional Committees for Medical and Health Research Ethics (REC).
Results Patients’ views on the use of coercion The views of the patients can be divided into three main groups: first, those who expressed a positive attitude to the use of some kind of coercion, although seldom unconditionally; second, those who were ambivalent or found it difficult to talk about; and third, those patients who were negative to using coercive treatment. Most patients expressed that they trusted the staff’s evaluation of the situation. In different ways they claimed that the staff should decide and do what they think is necessary because the staff knew what was best for them, and acted in their best interest, even if interventions had to be done against their will. Positive attitudes were reflected in expressions like I leave that to the staff . . . but if I was dotty or demented they’d have to do what was best for me . . . [Even if she refused] Yes, I think so. I trust them sufficiently.
Although some patients expressed unreserved confidence in the staff’s assessment of the necessity to use coercion, most patients stipulated necessary conditions: medication given against their will should be 6
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absolutely necessary and wash against their will should be to avoid health risk, to avoid negative reactions among other patients or the staff, or affect their dignity in a negative way. Here are some quotations, expressing the views of many: Yes, they have to use coercion then. If they have to get them to take medication. Even crumbling up pills . . . Because there’s no other way . . . No, I mean, hygiene, I think that’s . . . It’s very important that you get them clean one way or another . . . Yes, it’s no better if they smell bad and . . . to the contrary. That’s a hard job . . . Can’t have a person going around smelling bad and pooping their pants. I’d want them to wash me. To walk around like a dirty pig . . .
Several patients seemed to accept this kind of breach of patient autonomy, although preferably by doing it the gentle way, by coaxing and luring. As the above quotations show, there are several reasons why patients may accept the use of coercion. One reason is that patients suffering from dementia do not know their own good, whether it concerns necessary medication or maintaining their social self-image. Another reason is that the patients can be a bother to others. In other words, patients suffering from dementia lack some forms of understanding, and therefore, it is acceptable to use coercion in certain situations: Patients with dementia are a mess. Well, not just a mess, but a bit of it . . . Then they’re with it one minute, and not the next.
The interviews revealed, however, not only acceptance of coercive actions. Some patients found it difficult to imagine themselves in such hypothetical situations and also difficult to talk about, while others explicitly expressed ambivalence about using coercive treatment or care: I can’t decide, it should be up to them (the staff), but at the same time they must respect what the patient wants. That’s a hard question . . . Does it do any good to force medicine into a person who doesn’t want it?
Very few patients stated that the use of coercion was unacceptable under any circumstances.
Next of kin’s views on and experiences with the use of coercion Most relatives were positive to the use of coercion, although not unconditionally. While some of the relatives did not have any experience with situations where coercion had been considered, others had experienced that some type of coercion had been used against their loved one. Some had even initiated the process of setting physical hindrances such as tying the patient to their chair, or putting up a bedrail against the patient’s will, to protect the patient from falling and harming themselves: And when you’re in a wheelchair and your legs work, it’s very tempting to get up and go get stuff, or . . . So she gets up from it [the wheelchair] . . . There was no easy solution to it, because she’d say: No I won’t get up, but then gets up ten minutes later. And so I agreed to have her tied to the chair, but I asked them to leave her as free as possible.
Other relatives told us about coercive episodes where they had put pressure on their loved ones when visiting them or gave their approval to the use of coercion: 7
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Among the relatives whose loved ones had never been subjected to coercion, the majority also expressed positive attitudes towards using coercion: If you feel like the treatment is necessary, and you don’t want the person to get sick and die, then you have to accept that they use all available methods. This kind of coercion is there for protection
The quotations illustrate that the relatives perceived the use of coercion as a necessary evil, justified by the patient’s best interest, whether it was about safety, protecting their social self-image or preventing health risks. Though the majority of the relatives were fairly positive to using coercion for medical treatment and basic hygiene, a precondition was that the staff first try gently. Next of kin, even more than the patients themselves, emphasised the importance of being flexible and using different kinds of strategies in response to resistance before coercion is used: You don’t have to trick them to take it (medicine) . . . You see, they’ll take it eventually, I think. You know, it won’t work one day; today I’m difficult, but tomorrow I won’t be . . . It changes that fast.
Many relatives emphasise the value of spending time with the patient to avoid coercive measures. If this does not work, then the coercion must be carried out in the most compassionate way. Moreover, they expressed explicitly that treatment and care should be carried out in a way that is not seen as humiliating to their loved ones: Mom was very hard to shower and care for. It was chaotic, they felt it was abuse. I want Mom to be somewhat presentable, so to a degree I think they should try . . . but my attitude is that they shouldn’t force her, rather coax and lure. That takes time and resources.
Even though very few were outright negative to the use of different kinds of coercion, several relatives were worried and saw a risk that such interventions may evoke negative feelings, like humiliation and violation: There is a thin line between self-worth and having pills you don’t want thrust at you, even it is necessary. They might not remember in five minutes, but then and there it isn’t nice
Other relatives also expressed uncertainty about what the cognitively impaired person could remember after an episode of coercion: If they use coercion every day, how much do they remember of it? What do they dream about and how much do they remember after a week?
Other objections were related to how the use of coercion might affect the patient involved and the climate of the ward; would it create more agitation and restlessness?
Discussion The use of coercion in nursing homes is a complex field professionally, ethically and legally. The interviews revealed that both patients and relatives expressed widespread trust in the staff’s intention to act in the 8
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patients’ best interest in situations where patients are resisting what is assessed as necessary healthcare. In light of the fact that using coercion in nursing homes is strictly regulated by law, it was surprising that very few informants were outright negative towards the use of coercion and that about half the patients and most relatives expressed positive views, although seldom unconditionally.
Limitations The selection of institutions was based on our knowledge from research projects and ethics work. Thus, these nursing homes may not be representative. None of the patients interviewed had experienced coercion themselves. Interviews with patients who recently had experienced coercive measures or pressure and/or observational data from various challenging situations would most likely have given a more nuanced picture. Moreover, the use of coercion was only one of the several topics in the interviews, that is, if coercion had been the main topic it could have been explored a bit more, especially among the relatives. It was not easy to get the patients to dwell on this topic. When exploring the participants’ views on coercion, we gave examples of situations when coercion might be applied. This might have restricted their response. It is also important to remember that the frame of reference is different for patients and relatives, while the patients’ reflections were mainly based on hypothetical situations or situations they had observed, several relatives had experienced their family member resisting necessary treatment and care. The discussion is limited to two main topics: (1) how to understand the widespread trust in the staff’s will to act in the patient’s best interest and (2) reasons to accept the use of coercion.
Trust as a precondition for accepting coercion The pervasive trust in the staff’s good intentions, expressed by the patients and relatives, can be understood both in light of the general level of trust in society and in the vulnerability of nursing home patients. Several studies have demonstrated that both the level of personal trust and social trust is especially high in Norway and other Nordic countries.37 While personal trust is the trust that you have in a person, social trust is the confidence in societal institutions, such as the healthcare system. Vulnerable older people in need of nursing home care are likely to have a basic trust in the nursing home and the staff, giving the staff the authority to take care of them. Trust is particularly important for frail older people because to fall ill and be in need of nursing home care imply a loss of trust in your own ability to take care of yourself. An essential element in the very definition of trust is the firm belief that the other, the trusted one, will act in your best interest. However, this kind of trust has to be actively cultivated in their daily relationship. The patients and their relatives must experience that the staff are worthy of their confidence as their relationship develops. The interviews demonstrated that most patients and relatives felt that they were taken care of in a proper way. With few exceptions, the patients felt that most of the staff behaved professionally and compassionately, and accordingly, the staff would act in their best interest, even if that meant using coercion in situations where their cognitive impairment hindered good judgment. They assumed that the staff had an appropriate concern for their welfare. Attributing the cause of another person’s action to concern or caring has a powerful impact on the patients’ and relatives’ moral evaluation of those acts, affecting their perception of the fairness of those actions. Once the patients and relatives have come to evaluate the staff’s actions as motivated by an appropriate degree of concern, for example, for safety, those actions also seem to appear more justified. A basic requirement in the Patients’ and Users’ Rights Act38 is that measures to build confidence have to be tried before coercion is used. This is in line with what both the patients and the relatives emphasised in the interviews; the importance of using time and creative strategies to cope with resistance, before applying coercive measures. From recent research,9,10 we know that nursing home staff often use an impressive 9
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amount of creativity in finding strategies to cope with patient-resistance, strategies that may be interpreted as confidence-building interventions, in accordance with the legislation. Their opportunities to prevent and reduce coercion by using alternative strategies effectively are, however, greatly affected by the nursing home’s resources, by the organisation of care and by the staff’s competence.9
A battle for dignity We know that the use of coercion is most frequently related to everyday activities and daily care.39 We also know that nurses experience use of coercion towards persons with dementia as a ‘battle for beneficence’, that is, on one hand, using coercion to alleviate the patient’s suffering and enhance their quality of life, on the other hand, as a fight against the patient’s will.10,40 Coercive measures are often justified by referring to the best interest of the patient. This is, however, not always easy to define. Studies show diverse opinions among staff members, for example, doctors working in nursing homes may view the need for hygiene, such as showering, as less necessary than other nursing home staff do.8 This illustrates the need for bedside ethical reflections in the team. Both the need for essential medication and lack of basic hygiene could legitimate the breaching of patient autonomy, according to our respondents. It was somewhat surprising that poor hygiene was seen to be as important as refusal of medication. Both patients and relatives considered situations when patients resisted basic hygiene and care to be challenging and difficult for the staff to handle. They emphasised that in such situations, the staff must choose the interventions which had the patient’s best interest and the preservation of patient dignity as goals. The reasons for going against the patient’s expressed will – after first trying other strategies – were the consequences for the patient if the professionals did not act. This was not limited to health risks, but also included the patient’s previous self-image and current dignity, how he or she would have wanted to appear, if their cognitive functions were intact. Furthermore, the respondents also emphasised the interests, needs and perceptions of other patients when considering coercion. These considerations differ somewhat from the current Norwegian legislation on coercion, which excludes the interests of others as a relevant consideration, and would not allow for ‘coercive wash’ if there was no clear threat to the patient’s somatic health. An important condition for the use of coercion for both patients and relatives seemed to be that the patient lacked the necessary understanding to make a meaningful choice. Although not explicitly stated by the participants, lack of competence to consent seems to be a key condition for the use of coercion.
Conclusion To accept the use of coercive measures, most patients and relatives have to be sure that the staff first have tried other alternatives, using time and flexibility to convince the patient to do what they assess as necessary to the patient’s health and well being. Moreover, the acceptance of the use of different coercive measures is strongly related to the patient’s lack of understanding, the professionals acting in the best interest of the patient, preventing health risks, but also to promote dignity and fellow patients’ well being. That is, both patients and relatives seem to accept the doctrine of weak paternalism in daily care and considered both the best interests of the patient and that of others as important. Declaration of conflicting interests The authors declare that there is no conflict of interest. 10
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Funding This research received funding from the Norwegian Ministry of Health and Care. References 1. Evans D, Wood J and Lambert L. Patient injury and physical restraint devices: a systematic review. J Adv Nurs 2003; 41(3): 274–282. 2. Kirkevold O and Engedal K. Prevalence of patients subjected to constraint in Norwegian nursing homes. Scand J Caring Sci 2004; 18(3): 281–286. 3. Saarnio R, Isola A and Laukkala H. The use of physical restraint in institutional care of older people in Finland: nurses’ individual, communal and alternative modes of action. J Clin Nurs 2009; 18(1): 132–140. 4. Moore K and Haralambous B. Barriers to reducing the use of restraints in residential elder care facilities. J Adv Nurs 2007; 58(6): 532–540. 5. Gastmans C and Milisen K. Use of physical restraint in nursing homes: clinical–ethical considerations. J Med Ethics 2006; 32(3): 148–152. 6. Helsedirektoratet. Lov om pasientrettigheter kapittel 4A [The Patients’ and Users’ Rights Act, Chapter 4A]. Oslo: The Norwegian Directorate of Health, 2008. 7. Hem MH, Gjerberg E, Pedersen R, et al. Pleie og omsorg i grenselandet mellom frivillighet og tvang [Nursing and care at the boundary between voluntariness and coercion]. Sykepl Forsk 2010; 5(4): 294–301. 8. Pedersen R, Hem MH, Gjerberg E, et al. Use of coercion in nursing homes after new legislation. Tidsskr Nor Laegeforen 2013; 133(18): 1935–1939. 9. Gjerberg E, Helene HM, Forde R and Pedersen R. How to avoid and prevent coercion in nursing homes: a qualitative study. Nurs Ethics 2013; 20(6): 632–644. 10. Garden MH and Hauge S. Kampen for pasientens beste – sykepleieres opplevelse av a˚ delta i bruk av tvang overfor personer med demens [The battle for beneficence – Nurses experiences of the use of coercion in dementia care]. Va˚rd i Nord 2012; 32(4): 18–22. 11. Saarnio R and Isola A. Nursing staff perceptions of the use of physical restraint in institutional care of older people in Finland. J Clin Nurs 2010; 19(21–22): 3197–3207. 12. Gjerberg E, Forde R, Pedersen R, et al. Ethical challenges in the provision of end of life care in Norwegian nursing homes. Soc Sci Med 2010; 71: 677–684. 13. Saarnio R and Isola A. Use of physical restraint in institutional elderly care in Finland: perspectives of patients and their family members. Res Gerontol Nurs 2009; 2(4): 276–286. 14. Newbern VB and Lindsey IH. Attitudes of wives toward having their elderly husbands restrained. Geriatr Nurs 1994; 15(3): 135–138. 15. Haut A, Kolbe N, Strupheit S, et al. Attitudes of relatives of nursing home residents toward physical restraints. J Nurs Scholarsh 2010; 42(4): 448–456. 16. Hardin SB, Magee R, Vinson MH, et al. Patient and family perceptions of restraints. J Holist Nurs 1993; 11(4): 383–397. 17. Werner P, Cohen-Mansfield J, Green PM, et al. Families’ perceptions of the use of physical restraints in the nursing home. Clin Gerontologist 1993; 13(3): 45–57. 18. Malterud K. Qualitative research: Standars, challenges and guidelines. The Lancet 2001; 358(9280): 483–488. 19. Engberg J, Castle NG and McCaffrey D. Physical restraint initiation in nursing homes and subsequent resident health. Gerontologist 2008; 48(4): 442–452. 20. Gastmans C. Dignity-enhancing nursing care: a foundational ethical framework. Nurs Ethics 2013; 20(2): 142–149. 21. Goold SD. Trust, distrust and trustworthiness. J Gen Intern Med 2002; 17(1): 79–81. 22. Hem MH, Heggen K and Ruyter K. Creating trust in an acute psychiatric ward. Nurs Ethics 2008; 15(6): 777–788. 23. Delmar C. Tillid og Magt [Trust and power]. København: Munksgaard, 1999. 11
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24. Grimen H. Trust and power – three interrelationships. Tidsskr Nor Laegeforen 2001; 121(30): 3617–3619. 25. Grimen H. Power, trust, and risk: some reflections on an absent issue. Med Anthropol Q 2009; 23(1): 16–33. 26. Hall MA and Berenson RA. Ethical practice in managed care: a dose of realism. Ann Intern Med 1998; 128(5): 395–402. 27. Nordenfelt L. Dignity of the elderly: an introduction. Med Health Care Philos 2003; 6(2): 99–101. 28. Pullman D. The ethics of autonomy and dignity in long-term care. Can J Aging 1999; 18(1): 26–46. 29. Gallagher A. Dignity and respect for dignity – two key health professional values: implications for nursing practice. Nurs Ethics 2004; 11(6): 587–599. 30. Gallagher A, Li S, Wainwright P, et al. Dignity in the care of older people – a review of the theoretical and empirical literature. BMC Nurs 2008; 7: 11. 31. Nordenfelt L. The varieties of dignity. Health Care Anal 2004; 12(2): 69–81. 32. Beauchamp TL and Childress JF. Principles of biomedical ethics. 5th ed. Oxford: Oxford University Press, 2001. 33. Krueger RA and Casey MA. Focus groups: a practical guide for applied research. 4th ed. Los Angeles, CA: Sage, 2009. 34. Malterud K. Fokusgrupper som forskningsmetode for medisin og helsefag [Focus groups as a research method in medicine and health sciences]. Oslo: Universitetsforlaget, 2012. 35. Kvale S and Brinkmann S. Interviews: learning the craft of qualitative research interviewing. 2nd ed. Los Angeles, CA; London; New Delhi, India; Singapore: Sage, 2009. 36. Miles M and Huberman AM. Qualitative data analysis: an expanded sourcebook. London: Sage, 1994. 37. Grimen H and Skirbekk H. Tillit i Norge [Trust in a Norwegian perspective]. Oslo: Res Publica, 2012. 38. The Patients’ and Users’ Rights Act. Ministry of Health and Care Services, 2010, https://lovdata.no/dokument/NL/ lov/1999-07-02-63?q=Pasientrettighetsloven 39. Kirkevold O, Laake K and Engedal K. Use of constraints and surveillance in Norwegian wards for the elderly. Int J Geriatr Psychiatry 2003; 18(6): 491–497. 40. Edberg AK, Bird M, Richards DA, et al. Strain in nursing care of people with dementia: nurses’ experience in Australia, Sweden and United Kingdom. Aging Ment Health 2008; 12(2): 236–243.
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Coercion in nursing homes: Perspectives of patients and relatives
Nursing Ethics 1–12 ª The Author(s) 2015 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014564907 nej.sagepub.com
Elisabeth Gjerberg, Lillian Lillemoen, Reidar Pedersen and Reidun Førde University of Oslo, Norway
Abstract Background: Studies have demonstrated the extensive use of coercion in Norwegian nursing homes, which represents ethical, professional as well as legal challenges to the staff. We have, however, limited knowledge of the experiences and views of nursing home patients and their relatives. Objectives: The aim of this study is to explore the perspectives of nursing home patients and next of kin on the use of coercion; are there situations where the use of coercion can be defended, and if so, under which circumstances? Methods: The data are based on individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 60 relatives. Ethical considerations: Participation was based on written informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics. Results: More than half of the patients and the majority of the relatives accepted the use of coercion, trusting the staff to act in the patient’s best interest. However, the acceptance of coercion is strongly related to the patients’ lack of understanding, to prevent health risks and to preserve the patient’s dignity. Conclusion: The majority of nursing home patients and relatives accepted the use of coercion in specific situations, while at the same time they emphasised the need to try alternative strategies first. There is still a need for good qualitative research on the use of coercion in nursing homes, especially with a closer focus on the perspectives and experiences of nursing home patients. Keywords Nursing homes, coercion, patients, relatives, qualitative study
Introduction In Norway, as in several Western countries,1 different kinds of coercion are regularly applied in nursing homes, especially towards patients suffering from dementia. Studies have shown that about 40% of the Norwegian nursing home population was subjected to some type of constraint over the course of a week.2 The term ‘coercion’ includes all kinds of physical restraints; defined as direct or indirect restriction of
Corresponding author: Elisabeth Gjerberg, Centre for Medical Ethics, University of Oslo, P.O. Box 1130 Blindern, 0318 Oslo, Norway. Email: [email protected]
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activity,3 chemical and environmental restraints4 as well as force or pressure in healthcare or in activities of daily living.5 In spite of the extensive use of coercion in Norwegian nursing homes, this practice has until recently generally been illegal due to lack of legal authority. However, in January 2009, the Patients’ and Users’ Rights Act was supplemented with a new section (Section 4A), regulating the provision of somatic healthcare against the patient’s will.6 The main legal conditions are that the patient lacks the competence to consent, that the care and the coercive measures are in the patient’s best interest and that it is likely that the patient would have given permission for such care. Moreover, before coercive care can be provided, different confidence-building strategies must have been attempted to increase patient cooperation. Shortly after the new section came into force, we carried out a study on how nursing home staff understand and practise coercion, finding that the distinction between coercion and voluntariness can be blurred, and the situations can change quickly from voluntariness to coercion and vice versa.7 The study demonstrated serious legal, professional and ethical challenges.8 It also showed that nursing home staff usually spend a lot of time trying a wide range of approaches to avoid the use of coercion,9 and that when coercion is used, it may be to preserve the patient’s dignity by means of forced hygienic measures.7 Several studies have demonstrated that the use of coercion is experienced as emotionally difficult10 by nursing home staff, causing feelings of shame and guilt,11 and is of the most frequent ethically challenging situations reported.12 Despite a significant body of studies on the use of coercion in nursing homes, knowledge of how the residents and next of kin perceive the use of coercion seems to be limited.13 From an ethical point of view, these voices are necessary to analyse ethical aspects of the use of coercion in nursing homes. In order to examine nursing home patients’ and the next of kin’s views of coercion, it is important to recognise the complexity of these difficult situations and to look more closely at conflicting values when different kinds of coercive measures are applied. The aim of this article is to look closer at these values and to examine nursing homes patients’ and next of kin’s views on coercion through the following research questions: How do they think the staff should handle situations when patients resist medical care and treatment assessed as necessary? Are there situations when the use of coercion can be defended, and if so, why and under what circumstances?
Previous studies To identify relevant literature on the use of coercion in nursing homes from the point of view of patients and relatives, we carried out a systematic literature search using two databases: MEDLINE and CINAHL. The following search terms were used: ‘nursing homes’ or ‘long term care’ in combination with ‘coercion’ or ‘physical restraint’ or ‘power’. The search was carried out in March 2013 and was limited to empirical studies published in English from 1990 to 2013. There was no limitation concerning study design. The first author (E.G.) screened titles and abstracts of the identified references (546 in total) for potentially relevant articles. In total, 16 articles were reviewed in full text, and of these, 4 were included.4,13–15 The search was supplemented by examination of the reference lists of the retrieved articles, from which 2 studies were added,16,17 that is, in total, 6 studies were included.4,13–17 The identified studies all mainly looked at physical restraints, but both the focus and the methods of the studies varied, thus they are not directly comparable. One study had a mixed methods design,16 some were based on qualitative methods4,13,14 and others had used survey methods.15,17 The quality of the included studies was assessed as fairly good; the methods, data and results seem relevant, credible and trustworthy,18 although the sample size in some of the qualitative studies was very small. All the included studies had collected data from relatives of nursing home residents, who were examined either by survey methods15–17 or by qualitative methods.4,13,14 Three studies had also 2
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examined the perspectives of patients using focus group or individual interviews.4,13,16 In two of these studies, the patients had personal experience with being subject to physical restraints.13,16 The results from these two studies demonstrate that coercion may evoke both positive and negative feelings. For example, Hardin et al.16 found that although more than half the patients expressed negative feelings about being restrained, many patients also felt all right or safe afterwards. Also, Saarnio and Isola13 found that physical restraints made the patients feel safer, but at the same time they felt frustration, fear, loneliness and loss of dignity. The studies examining the views of next of kin are not consistent, while some studies have found that next of kin were rather positive to the use of physical restraints,15,17 other studies report that the relatives felt uncomfortable, guilty and helpless14 and had mixed feelings about seeing their loved one restrained.3,16 Both patients and relatives perceive that restraints are used for the safety of the patients.4,13,17 To prevent patients from harming themselves or others is often cited as the main reason for using restraints. However, several studies have documented that physical-restraint use has been associated with adverse outcomes and actually increased the chance of patient harm.1,19 The review revealed that there still is a lack of research relating to nursing home patients’ and relatives’ views about coercion, especially the patients’ perspectives are missing. Thus, there is a need for more knowledge based on their perspectives.
Theoretical frame of reference – conflicting values The reality of long-term care is that most patients become increasingly dependent as their mental and physical functions deteriorate. Their vulnerability has many dimensions not only with respect to their frail bodies but also with regard to the psychological, relational, social and spiritual dimensions of their life.20 These vulnerable patients cannot meet their own needs; they must rely on the goodwill of caregivers. The power imbalance in the nurse–patient relationship contributes to the patients’ vulnerability. This means that they must trust the staff’s interventions to be in their best interest. But what is the patient’s best interest and good care when the patient resists interventions which the staff see as necessary? According to Gastmans,20 the ethical essence of care can be defined as providing care in response to the vulnerability of human beings in order to maintain, protect and promote his or her dignity. Thus, trust and dignity seem to be the key concepts when looking at the views of patients and relatives on the use of coercion in nursing homes.
Trust Trust has been the focus of research in both healthcare and in theoretical disciplines, like sociology and philosophy. Trust as a sociological construct refers to people’s expectation, typically of goodwill, advocacy and competence. As such, it is future-directed, although influenced by past experiences.21 A general understanding is that trust is a basic condition for human interaction, including medical treatment and care.22 To trust is, however, to lay yourself open. When a person trusts someone, he or she is open to a possible course of action that he or she hopes will be according to his or her best interest. According to Delmar,23 trust is a self-exposure since there is an expectation that the other will be receptive to the trust and act in accordance to it. We expect that others wish us well, but we are simultaneously vulnerable to the potential evil purposes of others. Trust is, thus, not always an idyllic phenomenon; it may also serve as a context in which power is exercised. According to Grimen,24,25 power can create trust and vice versa. Reflecting on the relationship between power and trust, he claims that healthcare workers have a form of authority that creates trust. A 3
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sick and dependent person rarely has an alternative; he or she must trust that the caregivers have good intentions, competence and empathy. The trusting patient is placed, sometimes unwillingly, in a position of dependence and vulnerability, grants discretionary power to the staff in order to achieve something he or she desires and expects them to make decisions in his or her best interest. This is a positive kind of power; it is trust that allows beneficial power to exist.26
Autonomy and dignity Over the last decades, respect for patient autonomy and the doctrine of informed consent have by and large replaced a medical ethos founded on trust in the physicians’ decision. The main argument is that medical paternalism is often flawed. Informed consent has been emphasised in most healthcare legislation, and information, voluntariness and competence to consent are generally considered as necessary conditions for a valid consent and to provide healthcare. However, fulfilling all these conditions is often not possible within long-term care. Although nursing home patients may lose the ability to make autonomous decisions, their dignity should still be respected and promoted. Over the last decades, the concept of dignity has become a central concern, especially in relation to vulnerable older people.27–30 Recent discussion concerns how to respect the older people in their daily care and how to avoid violating their dignity.27,30 In his articles on the ethics of autonomy and dignity in long-term care, Pullman28 differentiates between two distinct, but related notions of dignity: ‘basic dignity’ and ‘personal dignity’. The first notion refers to the fundamental worth of all humanity and seems to overlap with what Nordenfelt31 calls ‘dignity of Menschenwu¨rde’. The notion of personal dignity is a more subjective form of dignity, and it is this latter kind of dignity that is the issue when dignity is equated with autonomy. Pullman28 warned, however, against a tendency to equate dignity with autonomy, which is to assume that people who lack the capacity for autonomous choices also lack human dignity. It is in relation to this we must understand the discussion of the potential conflict between autonomy and dignity,30 and the limited validity of the concept of autonomy as one of the guiding ethical principles in long-term care.28,30 That is, how can autonomy guide ethical decision-making when those whose care is at stake often lack the capacity to make autonomous choices? In these cases, autonomy may be superseded by the obligation to act beneficently.30,32 The challenge lies in preserving the patient’s basic and personal dignity while their ability to make autonomous choices deteriorates and when the choices they make can represent a risk to their health, their personal dignity or affect others in a negative way. Thus, cognitively impaired patients often require an increasing degree of paternalistic intervention and support. When the patient lacks the competence to consent and the staff intervene on grounds of beneficence, preventing harm or protecting people against their own expressed will, this is defined as weak paternalism.32 Rather than construing autonomy and this kind of paternalism as being in opposition to each other, an ethic of dignity views them as complementary insofar as both aim to serve, enhance and protect the dignity of patients. Along the same lines, one may argue that to strike a balance between paternalism and autonomy may be an important way to create trust. We have, however, limited knowledge on the positions these theories and values actually have in nursing home patients’ and relatives’ perspectives on coercion.
Methodology The study has a qualitative and explorative design. Data were collected through a combination of individual interviews with nursing home patients and focus group interviews with relatives. 4
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Sample Six nursing homes in four different municipalities in the Southeast of Norway were asked to participate in the study. This convenient sample of nursing homes were selected based on knowledge from other research projects, or because we knew that they were involved in some kind of ethics work. Each nursing home was asked to purposefully recruit patients and relatives who might be interested and capable to participate in the study. The nursing home staff gave a verbal description of the study to patients and relatives and handed out a covering letter with the same information. Because the use of coercion was one of the multiple themes, it was not a selection criterion that patients or next of kin themselves had experienced coercion. The patients. To be included in the study, patients had to have capacity to consent and the ability to engage in a conversation about what is important to them as residents in the nursing home. A total of 38 nursing home residents were interviewed. Two of them had more severe cognitive impairments than expected and were unable to expand on their reasoning. The data from these interviews were not included in the analysis. One resident changed her mind and decided not to participate. Thus, the study sample consists of 35 patients: 27 women and 8 men. The age range of the participants was 68–98 years (mean 86 years). All interviews were carried out in the patient’s room. Each interview lasted between 20 and 40 min. Interview times were intentionally kept short to prevent possible exhaustion of the patient. The next of kin. The persons who were selected for focus group interviews were the relatives of nursing home patients with some form of cognitive impairment. They were spouses, children or other close relatives. The majority of the patients that they were related to had been in the nursing home for 2 years or more. Seven focus group interviews were undertaken comprising 60 relatives.
Interviews The patients. Data were collected using semi-structured interviews with each patient. The interviews were based on an interview guide comprising 10 questions, began with a general question on how they enjoy the nursing home and progressed to more specific questions, of which one focussed on the use of coercion. The question was derived from the findings in an earlier study where we interviewed nursing home staff about their experiences with coercion in nursing homes:7–9 If you were to suffer from dementia and not understand what was ‘in your best interest’, for example, you refused to take your medication, refused to groom yourself or you behaved in a way that others reacted negatively to, what would you want to happen: 1. That the staff does what is necessary, even though it is against your will? 2. That your will is respected, with the consequence that you would not receive necessary medication, or that you would not be cleaned or groomed? The respondents were invited to expand on the issues, describing their views and possible experiences. Two of the authors conducted the first 10 interviews together, the rest were divided between the two of us. The next of kin. The interview guide for the focus group interviews with relatives comprised eight questions, where one focussed on the use of coercion: Disease can lead to a patient no longer understanding what is in their best interest, for example that they refuse to take their medication, refuse to wash themselves or behave in a way that others react negatively to. How do you think health care personnel should handle such situations? 5
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The purpose of using focus group interviews was to develop insight into the relatives’ experiences and views through group discussions33 and to gain a large amount of information in a short period of time. The focus group interviews were conducted by two of the authors, who supplemented each other with follow-up questions. The interviews lasted from 1½ to 2 h.
Data analysis All interviews, with one exception, were audio-recorded with consent from participants and transcribed verbatim. Written notes were taken in one interview that was not audio-recorded due to a broken recorder. The analysis was carried out in several steps. First, all four authors independently read the transcripts and discussed the content both during and after the interview process. This gave us a first impression of each of the main themes in the interviews, but also a broader look at the interviews as a whole. The first two authors have collaborated on the further analysis of the text. This process ensured an intersubjective understanding between us.34 After reading through all the material, the text relating to coercion or pressured action was selected and re-read several times. We also switched back and forth between the selected fractions of the text and the full interviews to look for other statements that were related to the question about coercion. The material was then structured according to categorisation of the participants’ attitudes to use of coercion and situations where they consider the use of coercion as legitimate. The analyses of the data rest on a general reading of the interviews with empirical and theoretical informed interpretations,35 that is, the analyses are inspired both from the interviews, our research on use of coercion in nursing homes7–9 and theories on ethical principles. This is a sort of ‘ad-hoc analyses’,35,36 an eclectic form of generating meaning in qualitative texts.
Ethical considerations Written informed consent was obtained before the interviews from all participants. Audiotracs were erased at the end of the study. The study was approved by the Regional Committees for Medical and Health Research Ethics (REC).
Results Patients’ views on the use of coercion The views of the patients can be divided into three main groups: first, those who expressed a positive attitude to the use of some kind of coercion, although seldom unconditionally; second, those who were ambivalent or found it difficult to talk about; and third, those patients who were negative to using coercive treatment. Most patients expressed that they trusted the staff’s evaluation of the situation. In different ways they claimed that the staff should decide and do what they think is necessary because the staff knew what was best for them, and acted in their best interest, even if interventions had to be done against their will. Positive attitudes were reflected in expressions like I leave that to the staff . . . but if I was dotty or demented they’d have to do what was best for me . . . [Even if she refused] Yes, I think so. I trust them sufficiently.
Although some patients expressed unreserved confidence in the staff’s assessment of the necessity to use coercion, most patients stipulated necessary conditions: medication given against their will should be 6
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absolutely necessary and wash against their will should be to avoid health risk, to avoid negative reactions among other patients or the staff, or affect their dignity in a negative way. Here are some quotations, expressing the views of many: Yes, they have to use coercion then. If they have to get them to take medication. Even crumbling up pills . . . Because there’s no other way . . . No, I mean, hygiene, I think that’s . . . It’s very important that you get them clean one way or another . . . Yes, it’s no better if they smell bad and . . . to the contrary. That’s a hard job . . . Can’t have a person going around smelling bad and pooping their pants. I’d want them to wash me. To walk around like a dirty pig . . .
Several patients seemed to accept this kind of breach of patient autonomy, although preferably by doing it the gentle way, by coaxing and luring. As the above quotations show, there are several reasons why patients may accept the use of coercion. One reason is that patients suffering from dementia do not know their own good, whether it concerns necessary medication or maintaining their social self-image. Another reason is that the patients can be a bother to others. In other words, patients suffering from dementia lack some forms of understanding, and therefore, it is acceptable to use coercion in certain situations: Patients with dementia are a mess. Well, not just a mess, but a bit of it . . . Then they’re with it one minute, and not the next.
The interviews revealed, however, not only acceptance of coercive actions. Some patients found it difficult to imagine themselves in such hypothetical situations and also difficult to talk about, while others explicitly expressed ambivalence about using coercive treatment or care: I can’t decide, it should be up to them (the staff), but at the same time they must respect what the patient wants. That’s a hard question . . . Does it do any good to force medicine into a person who doesn’t want it?
Very few patients stated that the use of coercion was unacceptable under any circumstances.
Next of kin’s views on and experiences with the use of coercion Most relatives were positive to the use of coercion, although not unconditionally. While some of the relatives did not have any experience with situations where coercion had been considered, others had experienced that some type of coercion had been used against their loved one. Some had even initiated the process of setting physical hindrances such as tying the patient to their chair, or putting up a bedrail against the patient’s will, to protect the patient from falling and harming themselves: And when you’re in a wheelchair and your legs work, it’s very tempting to get up and go get stuff, or . . . So she gets up from it [the wheelchair] . . . There was no easy solution to it, because she’d say: No I won’t get up, but then gets up ten minutes later. And so I agreed to have her tied to the chair, but I asked them to leave her as free as possible.
Other relatives told us about coercive episodes where they had put pressure on their loved ones when visiting them or gave their approval to the use of coercion: 7
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Among the relatives whose loved ones had never been subjected to coercion, the majority also expressed positive attitudes towards using coercion: If you feel like the treatment is necessary, and you don’t want the person to get sick and die, then you have to accept that they use all available methods. This kind of coercion is there for protection
The quotations illustrate that the relatives perceived the use of coercion as a necessary evil, justified by the patient’s best interest, whether it was about safety, protecting their social self-image or preventing health risks. Though the majority of the relatives were fairly positive to using coercion for medical treatment and basic hygiene, a precondition was that the staff first try gently. Next of kin, even more than the patients themselves, emphasised the importance of being flexible and using different kinds of strategies in response to resistance before coercion is used: You don’t have to trick them to take it (medicine) . . . You see, they’ll take it eventually, I think. You know, it won’t work one day; today I’m difficult, but tomorrow I won’t be . . . It changes that fast.
Many relatives emphasise the value of spending time with the patient to avoid coercive measures. If this does not work, then the coercion must be carried out in the most compassionate way. Moreover, they expressed explicitly that treatment and care should be carried out in a way that is not seen as humiliating to their loved ones: Mom was very hard to shower and care for. It was chaotic, they felt it was abuse. I want Mom to be somewhat presentable, so to a degree I think they should try . . . but my attitude is that they shouldn’t force her, rather coax and lure. That takes time and resources.
Even though very few were outright negative to the use of different kinds of coercion, several relatives were worried and saw a risk that such interventions may evoke negative feelings, like humiliation and violation: There is a thin line between self-worth and having pills you don’t want thrust at you, even it is necessary. They might not remember in five minutes, but then and there it isn’t nice
Other relatives also expressed uncertainty about what the cognitively impaired person could remember after an episode of coercion: If they use coercion every day, how much do they remember of it? What do they dream about and how much do they remember after a week?
Other objections were related to how the use of coercion might affect the patient involved and the climate of the ward; would it create more agitation and restlessness?
Discussion The use of coercion in nursing homes is a complex field professionally, ethically and legally. The interviews revealed that both patients and relatives expressed widespread trust in the staff’s intention to act in the 8
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patients’ best interest in situations where patients are resisting what is assessed as necessary healthcare. In light of the fact that using coercion in nursing homes is strictly regulated by law, it was surprising that very few informants were outright negative towards the use of coercion and that about half the patients and most relatives expressed positive views, although seldom unconditionally.
Limitations The selection of institutions was based on our knowledge from research projects and ethics work. Thus, these nursing homes may not be representative. None of the patients interviewed had experienced coercion themselves. Interviews with patients who recently had experienced coercive measures or pressure and/or observational data from various challenging situations would most likely have given a more nuanced picture. Moreover, the use of coercion was only one of the several topics in the interviews, that is, if coercion had been the main topic it could have been explored a bit more, especially among the relatives. It was not easy to get the patients to dwell on this topic. When exploring the participants’ views on coercion, we gave examples of situations when coercion might be applied. This might have restricted their response. It is also important to remember that the frame of reference is different for patients and relatives, while the patients’ reflections were mainly based on hypothetical situations or situations they had observed, several relatives had experienced their family member resisting necessary treatment and care. The discussion is limited to two main topics: (1) how to understand the widespread trust in the staff’s will to act in the patient’s best interest and (2) reasons to accept the use of coercion.
Trust as a precondition for accepting coercion The pervasive trust in the staff’s good intentions, expressed by the patients and relatives, can be understood both in light of the general level of trust in society and in the vulnerability of nursing home patients. Several studies have demonstrated that both the level of personal trust and social trust is especially high in Norway and other Nordic countries.37 While personal trust is the trust that you have in a person, social trust is the confidence in societal institutions, such as the healthcare system. Vulnerable older people in need of nursing home care are likely to have a basic trust in the nursing home and the staff, giving the staff the authority to take care of them. Trust is particularly important for frail older people because to fall ill and be in need of nursing home care imply a loss of trust in your own ability to take care of yourself. An essential element in the very definition of trust is the firm belief that the other, the trusted one, will act in your best interest. However, this kind of trust has to be actively cultivated in their daily relationship. The patients and their relatives must experience that the staff are worthy of their confidence as their relationship develops. The interviews demonstrated that most patients and relatives felt that they were taken care of in a proper way. With few exceptions, the patients felt that most of the staff behaved professionally and compassionately, and accordingly, the staff would act in their best interest, even if that meant using coercion in situations where their cognitive impairment hindered good judgment. They assumed that the staff had an appropriate concern for their welfare. Attributing the cause of another person’s action to concern or caring has a powerful impact on the patients’ and relatives’ moral evaluation of those acts, affecting their perception of the fairness of those actions. Once the patients and relatives have come to evaluate the staff’s actions as motivated by an appropriate degree of concern, for example, for safety, those actions also seem to appear more justified. A basic requirement in the Patients’ and Users’ Rights Act38 is that measures to build confidence have to be tried before coercion is used. This is in line with what both the patients and the relatives emphasised in the interviews; the importance of using time and creative strategies to cope with resistance, before applying coercive measures. From recent research,9,10 we know that nursing home staff often use an impressive 9
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amount of creativity in finding strategies to cope with patient-resistance, strategies that may be interpreted as confidence-building interventions, in accordance with the legislation. Their opportunities to prevent and reduce coercion by using alternative strategies effectively are, however, greatly affected by the nursing home’s resources, by the organisation of care and by the staff’s competence.9
A battle for dignity We know that the use of coercion is most frequently related to everyday activities and daily care.39 We also know that nurses experience use of coercion towards persons with dementia as a ‘battle for beneficence’, that is, on one hand, using coercion to alleviate the patient’s suffering and enhance their quality of life, on the other hand, as a fight against the patient’s will.10,40 Coercive measures are often justified by referring to the best interest of the patient. This is, however, not always easy to define. Studies show diverse opinions among staff members, for example, doctors working in nursing homes may view the need for hygiene, such as showering, as less necessary than other nursing home staff do.8 This illustrates the need for bedside ethical reflections in the team. Both the need for essential medication and lack of basic hygiene could legitimate the breaching of patient autonomy, according to our respondents. It was somewhat surprising that poor hygiene was seen to be as important as refusal of medication. Both patients and relatives considered situations when patients resisted basic hygiene and care to be challenging and difficult for the staff to handle. They emphasised that in such situations, the staff must choose the interventions which had the patient’s best interest and the preservation of patient dignity as goals. The reasons for going against the patient’s expressed will – after first trying other strategies – were the consequences for the patient if the professionals did not act. This was not limited to health risks, but also included the patient’s previous self-image and current dignity, how he or she would have wanted to appear, if their cognitive functions were intact. Furthermore, the respondents also emphasised the interests, needs and perceptions of other patients when considering coercion. These considerations differ somewhat from the current Norwegian legislation on coercion, which excludes the interests of others as a relevant consideration, and would not allow for ‘coercive wash’ if there was no clear threat to the patient’s somatic health. An important condition for the use of coercion for both patients and relatives seemed to be that the patient lacked the necessary understanding to make a meaningful choice. Although not explicitly stated by the participants, lack of competence to consent seems to be a key condition for the use of coercion.
Conclusion To accept the use of coercive measures, most patients and relatives have to be sure that the staff first have tried other alternatives, using time and flexibility to convince the patient to do what they assess as necessary to the patient’s health and well being. Moreover, the acceptance of the use of different coercive measures is strongly related to the patient’s lack of understanding, the professionals acting in the best interest of the patient, preventing health risks, but also to promote dignity and fellow patients’ well being. That is, both patients and relatives seem to accept the doctrine of weak paternalism in daily care and considered both the best interests of the patient and that of others as important. Declaration of conflicting interests The authors declare that there is no conflict of interest. 10
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