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 patientâs best interest. However, the acceptance of coercion is strongly related to the patientsâ lack of understanding, to prevent health risks and to preserve the patientâs 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.
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 âcoercionâ includes all kinds of physical restraints; defined as direct or indirect restriction of activity, 3 chemical and environmental restraints 4 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 Patientsâ and Usersâ Rights Act was supplemented with a new section (Section 4A), regulating the provision of somatic healthcare against the patientâs 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 patientâs 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 patientâs dignity by means of forced hygienic measures. 7
Several studies have demonstrated that the use of coercion is experienced as emotionally difficult 10 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 patientsâ and the next of kinâs 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 patientsâ and next of kinâs 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: ânursing homesâ or âlong term careâ in combination with âcoercionâ or âphysical restraintâ or âpowerâ. 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 â15 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 â17
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 methods 4,13,14 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 methods 15 â17 or by qualitative methods. 4,13,14 Three studies had also 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 Isola 13 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 helpless 14 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 patientsâ and relativesâ views about coercion, especially the patientsâ perspectives are missing. Thus, there is a need for more knowledge based on their perspectives.
Theoretical frame of reference â 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 nurseâpatient relationship contributes to the patientsâ vulnerability. This means that they must trust the staffâs interventions to be in their best interest. But what is the patientâs 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 peopleâs 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 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 physiciansâ 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 â30 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, Pullman 28 differentiates between two distinct, but related notions of dignity: âbasic dignityâ and âpersonal dignityâ. The first notion refers to the fundamental worth of all humanity and seems to overlap with what Nordenfelt 31 calls âdignity of MenschenwĂŒrdeâ. 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. Pullman 28 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 patientâs 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 patientsâ and relativesâ 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.
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 68â98 years (mean 86 years). All interviews were carried out in the patientâs 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 â9
If you were to suffer from dementia and not understand what was âin your best interestâ, 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:
That the staff does what is necessary, even though it is against your will? 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?
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 participantsâ 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 homes 7 â9 and theories on ethical principles. This is a sort of âad-hoc analysesâ, 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
Patientsâ 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 staffâs 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 âŠbut if I was dotty or demented theyâd have to do what was best for meâŠ[Even if she refused] Yes, I think so. I trust them sufficiently. Yes, they have to use coercion then. If they have to get them to take medication. Even crumbling up pillsâŠBecause thereâs no other way⊠No, I mean, hygiene, I think thatâsâŠItâs very important that you get them clean one way or anotherâŠYes, itâs no better if they smell bad andâŠto the contrary. Thatâs a hard jobâŠCanât have a person going around smelling bad and pooping their pants. Iâd want them to wash me. To walk around like a dirty pigâŠ
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 itâŠThen theyâre with it one minute, and not the next. I canât decide, it should be up to them (the staff), but at the same time they must respect what the patient wants. Thatâs a hard questionâŠDoes it do any good to force medicine into a person who doesnât want it?
Next of kinâs 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 patientâs will, to protect the patient from falling and harming themselves: And when youâre in a wheelchair and your legs work, itâs very tempting to get up and go get stuff, orâŠSo she gets up from it [the wheelchair]âŠThere was no easy solution to it, because sheâd say: No I wonât 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. I have been part of indirect coercion related to showering. Mom refused to shower and I told them to call me if there was a problem. I told her that she had company coming and had to look decentâŠThat wasnât true,âŠso I tricked her. If you feel like the treatment is necessary, and you donât 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
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 donât have to trick them to take it (medicine)âŠYou see, theyâll take it eventually, I think. You know, it wonât work one day; today Iâm difficult, but tomorrow I wonât beâŠIt changes that fast. 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 tryâŠbut my attitude is that they shouldnât force her, rather coax and lure. That takes time and resources. There is a thin line between self-worth and having pills you donât want thrust at you, even it is necessary. They might not remember in five minutes, but then and there it isnât nice 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?
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 staffâs intention to act in the patientsâ 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 participantsâ 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 patientsâ 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 staffâs will to act in the patientâs best interest and (2) reasons to accept the use of coercion.
Trust as a precondition for accepting coercion
The pervasive trust in the staffâs 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 personâs action to concern or caring has a powerful impact on the patientsâ and relativesâ moral evaluation of those acts, affecting their perception of the fairness of those actions. Once the patients and relatives have come to evaluate the staffâs 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 Patientsâ and Usersâ Rights Act 38 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 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 homeâs resources, by the organisation of care and by the staffâs 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 âbattle for beneficenceâ, that is, on one hand, using coercion to alleviate the patientâs suffering and enhance their quality of life, on the other hand, as a fight against the patientâs 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 patientâs best interest and the preservation of patient dignity as goals. The reasons for going against the patientâs expressed will â after first trying other strategies â were the consequences for the patient if the professionals did not act. This was not limited to health risks, but also included the patientâs 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 âcoercive washâ if there was no clear threat to the patientâs 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 patientâs health and well being. Moreover, the acceptance of the use of different coercive measures is strongly related to the patientâs lack of understanding, the professionals acting in the best interest of the patient, preventing health risks, but also to promote dignity and fellow patientsâ 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.
Footnotes
Declaration of conflicting interests
The authors declare that there is no conflict of interest.
Funding
This research received funding from the Norwegian Ministry of Health and Care.
