Article
Ethical challenges in care for older patients who resist help
Nursing Ethics 1–11 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014542672 nej.sagepub.com
Kari Brodtkorb, Anne Valen-Sendstad Skisland, ˚ shild Slettebø and Ragnhild Skaar A University of Agder, Norway
Abstract Background: Situations where patients resist necessary help can be professionally and ethically challenging for health professionals, and the risk of paternalism, abuse and coercion are present. Research question: The purpose of this study was to examine ethical challenges in situations where the patient resists healthcare. Research design: The method used was clinical application research. Academic staff and clinical coresearchers collaborated in a hermeneutical process to shed light on situations and create a basis for new action. Participants and research context: Four research groups were established. Each group consisted of six to eight clinical co-researchers, all employees with different health profession backgrounds and from different parts of the municipal healthcare services, and two scientific researchers. Ethical considerations: The study was conducted in compliance with ethical guidelines and principles. Participants were informed that participation was voluntary and that confidentiality would be maintained. They signed a consent form. Findings: The findings showed that the situations where patients opposed help related to personal hygiene, detention in an institution and medication associated with dental treatment. The situations were perceived as demanding and emotionally stressful for the clinicians. Discussion: The situations can be described as everyday ethics and are more characterised by moral uncertainty and moral distress than by being classic ethical dilemmas. Conclusion: Norwegian legislation governing the use of force seems to provide decision guidance with the potential to reduce uncertainty and moral stress if the clinicians’ legal competence had been greater. Keywords Community healthcare, everyday ethics, moral distress, patient autonomy, restraint
Introduction The starting point for health professionals is legislation and an occupational code that indicates that help should be given voluntarily and with consent.1 The principle of patient autonomy is solidly embedded in Western philosophy and ethics and is increasingly emphasised in clinical practice, professional ethics and health legislation.2 The principle justifies the moral rule that health professionals should provide help based
Corresponding author: Kari Brodtkorb, Centre for Caring Research, Faculty for Health and Sport Sciences, University of Agder, P.O. Box 509, 4898 Grimstad, Norway. Email: [email protected]
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on the patient’s consent. When health professionals encounter patients who resist the help they consider as necessary, they find themselves in a difficult situation where the risk of paternalism, abuse and coercion are present. Two studies have found that questions concerning autonomy and informed consent to treatment are common and stressful ethical issues faced by nurses in everyday practice.3,4 Physical restraints are frequently used in the care of older people5 for a variety of purposes, such as decreasing the risk of falls and injuries,6 preventing interference with treatment,5,7 controlling behaviour and lack of nursing staff.7 Using physical restraint is associated with impaired mobility, cognition and social functioning and behavioural symptoms in patients6,8 and moral uncertainty9 and moral distress in nurses, who are also subjected to violence from patients in these situations.3 Kirkevold and Engedal have in several studies documented that the use of force against residents of Norwegian nursing homes is extensive and problematic.5,10–12 These findings formed the basis for the development of legislation that authorises the use of force and that shall ensure legal protection for people who are unable to consent to medical care, independent of cognitive impairment.1,13 The purpose is to prevent significant damage to health and to regulate and restrict coercion. Five years later, an enquiry found extensive use of force in violation of the law, and that regulations are not well enough known and incorporated into practice.14 The literature review thus shows that there is some knowledge of the subject, but how caregivers address ethical challenges has not been adequately explored. The purpose of this study was to examine ethical challenges in situations where the patient resists healthcare.
Design and method The study has a qualitative and empirical design and the method is clinical application research. The study is part of a larger research project focussing on systematic ethics work in older people care in Norwegian municipal health services. The context is a medium-size municipality in Norway with approximately 20,000 inhabitants. The municipality has two nursing homes and home-based healthcare divided into three geographical zones.
Clinical application research Clinical application research is a method based on hermeneutic research understanding. Scientific researchers and clinical co-researchers take part in groups, which over time cooperate in a hermeneutic research process to gain knowledge of a phenomenon.15 The clinical co-researchers bring in situations from their practice in the groups, and through description, reflection and interpretation of theoretical knowledge the basis is created for a new plan of action that clinicians try between group sessions. The scientific researchers have a special responsibility to bring in theoretical knowledge. However, everyone participates in an interpretation that enables what Gadamer16 calls horizontal fusion, resulting in new knowledge. Three assumptions are considered fundamental for the development of knowledge: participation and integrated knowledge, critical subjectivity and knowledge in action.17 Participation and integrated knowledge implies that the clinical and scientific researchers are equal in the process and work together towards a common integrated understanding. Critical subjectivity involves critically assessing and analysing the phenomenon based on the individual participants’ subjective understanding. The aim is to raise awareness so that new knowledge and new options for action can be explored and developed.17,18
Data production Four research groups were established that met totally 15 times, three to four times each at regular intervals during the period from autumn 2010 to spring 2011. Each group consisted of six to eight clinical co2
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researchers (24 women and 2 men) and two scientific researchers. Employees with different health profession background, registered nurses, enrolled nurses, physiotherapists and managers and from different parts of the municipal healthcare services, were the clinical co-researchers in the groups. In the fourth group, the clinical co-researchers were managers at various levels. This variety of backgrounds and experience constituted the clinical co-researchers’ (hereafter called the clinicians) pre-understanding. The scientific researchers (hereafter called the authors) are all nurses at PhD level with experience in older people care. The authors led group sessions, which were structured in line with the phase classification in clinical application research according to Hummelvoll.19 The following phases were conducted: (a) the participants came to an agreement on the challenges or situations that should be highlighted and discussed, (b) participants decided how these challenges could be met in practice, (c) participants elaborated on the challenges and the practices they were in and (d) participants re-reflected on experiences from testing in the following team meeting.
Analysis Group interviews were audiotaped, transcribed and preliminarily analysed after each collection. This was done to clarify action alternatives and bring in relevant theory for use in the next meeting. A hermeneutical interpretation was made in line with Gadamer.16 Care ethics and ethical and legal principles, such as selfdetermination and free will, constituted the theoretical understanding and the interpretation perspective from which the authors interpreted the findings. A preliminary analysis was carried out and was presented to the clinicians in a validation seminar. They provided suggestions that were incorporated into the findings. The entire text was read through to obtain a general impression and then divided into units that were condensed and grouped into the following two sub-themes: (a) the clinicians’ choice of action, with the following three categories: personal hygiene, concealed medication and detention in an institution and (b) the clinicians’ emotional reaction with the category: an emotional strain. The two sub-themes were combined in an overarching theme: when the patient resists help. All the authors followed the analysis process and used discussion to reach a consensus on the interpretation of data.
Research ethical considerations The study was conducted in compliance with ethical guidelines and ethical principles.2,20 Participants were informed that participation was voluntary and that confidentiality would be maintained. They signed a consent form. The study was approved by the Norwegian Social Science Data Services (NSD), a center for research method and research ethics (project no. 24401).
Results The two sub-themes with categories will be presented below.
Clinicians’ choice of action The findings showed that clinicians in situations related to basic care giving activities had real choices in action and made decisions based on their best professional and moral judgment. 3
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Personal hygiene In some situations, all with at-home patients, relatives insisted that the help be given. The patients had limited activity level due to somatic and/or cognitive impairment. The staff saw the patients’ need for assistance, but were unsure to what degree the help was required. Relatives had higher hygiene standards than the patients themselves, and higher than what the clinicians felt comfortable providing, given that the patient did not want it. In one case, the family and staff agreed that help was needed, but had different views on how it should be given. While family members wanted the patient to do as much as possible themselves to maintain functional ability, the staff saw this as stressful for the patient and thought compensatory help was needed. After further assessment, the clinicians believed that the help was not strictly necessary, and that it was therefore appropriate to offer it, but to also accept the patient’s refusal. The clinicians endeavoured to keep open communication with the patient: ‘Having a really good conversation and being honest, is not achieved in five minutes’. It turned out that a good conversation was not so easy to achieve, because the patient did not want it or because the staff did not manage it. The consequence of discussing the situation with colleagues could be different than planned: ‘We brought it up in the staff group and agreed that she should be able to choose [help with personal hygiene] herself. I told her and she was very happy’. Open communication with relatives was also considered desirable: ‘Perhaps families also need someone to talk to, because they are not in a simple situation. Maybe they need information about what growing old is like and how we can’t override the patient’s wishes’. Coercion was sometimes used in care situations. That some were more successful than others in avoiding coercion was a phenomenon clinicians were familiar with, but which usually was not communicated between nurses or discussed with the patient: The patient behaves differently depending on who is coming and relates better with some than with others. Maybe it something to do with personality, with how calm the person is, I do not know. I do not think anyone has asked those questions to the patient.
Actions that were tried successfully were to ensure that clinicians as far as possible had the necessary time available, so they avoided forcing the pace and thereby provoking resistance. Home nurses work from preconfigured lists based on estimated time for the individual patient. It was not problematic to set aside more time if needed. However, time needs still varied from day to day, and sometimes more time than planned was needed for the quality to be good. Then, the next patient had to wait: ‘Our work lists are planned out so that all employees have enough to do, it is a rat race, really’. In other situations, the clinicians deemed the help as needed. They referred to patients with dementia who received help from home nurses. Sometimes, it was given by coercion: She holds onto our clothes. We have to bend the fingers up, start with the little finger and open the hands. Sometimes we have to be two people. One is talking and the other does the action. And it does happen that the patient becomes aggressive, hits and yells.
In this case, the clinicians assessed the help as necessary and found that the patient lacked ability to consent. Still, no compulsory intervention decision was made, as required by the law. The clinicians appeared to have limited awareness that they exercised coercion and lacked knowledge of the regulations governing the use of force. They stated that it was particularly challenging to avoid coercion in assisted living. Here, the help was given by nurses within a predefined schedule. In home care, it was also a challenge that each patient was visited by many nurses: 4
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We are notorious for that. That is a weakness in the home care; there are many new faces and too little continuity. However, management is now very willing to change this. Now we have new rotas which mean that for the most part there are four people who go to one patient.
The clinicians still concluded on several occasions that inflexibility was a challenge in the home care service. If it proved impossible to carry out chores on time, it was always possible to try later. It was questioned how suitable assisted living without a permanent staff is for people with dementia: ‘Shouldn’t patients with this problem rather be in an institution?’
Concealed medication The clinicians sometimes gave patients sedatives without the patient’s knowledge. The aim could be to prevent unrest, or it could be needed to provide the help they thought patients needed. One situation dealt with involuntary dental treatment. A patient with dementia living in a nursing home had received notice to go to the dentist. The clinicians had previously found that the patient had resisted treatment and came back from the dentist without results. When the patient verbally resisted going they had, in agreement with the doctor and without the patient being aware of it, given a sedative beforehand. Family members followed the patient to the dentist. The visit was successful in the sense that the patient received dental treatment without resisting it, and the patient and family were satisfied on their return. The clinicians saw the episode as questionable and believed that the solution was not legally tenable. When the patient was called to the dentist again, they realised that all alternatives had negative aspects. They could suggest a dentist visit and accept a refusal from the patient. They considered that to be an untenable solution, as the consequences in the long term could be very distressing for the patient. They could take the patient to the dentist by force, which they considered as unnecessarily restrictive and therefore rejected. Furthermore, they could resolve the situation in the same way as before, by tricking the patient with a sedative. One clinician argued for this option: ‘The question is, what is the worst ethically? If the cavity in the tooth had been allowed to develop, it would have had become so painful that dental visits would be necessary’. One option discussed was to inform the supervising authority and wait with the dental visit in anticipation of a response. The clinicians checked this possibility further, but concluded that legislation did not open to allow medication against the patient’s will. It was suggested that someone with management responsibilities might be able to enter into dialogue with the authorities to find the best solution, before it was carried out. The clinicians concluded that it would be ethically irresponsible to fail to ensure that dental treatment could occur, and that it was impossible to implement without medication. Based on experience, they also perceived the supervising authority as more of an adversary than as a partner. It was therefore of limited interest to enter into a dialogue with them about the issues they experienced as a legal grey area. It was also seen as cumbersome and time consuming, and they were not experienced with regard to assessing consent and formulating the necessary documentation. They decided that they had to make a decision on their own, and when the choice was between following the law, which most likely would have as a consequence that the patient did not receive dental care, and to give the hidden sedative, they chose the latter: I think the patient suffers the least in the option we chose. The person in question did not have to dread the visit long in advance because we deliberately chose not to mention it. The patient was calm and relaxed and we avoided having to use physical force.
They chose the option they assessed as being least intrusive and in the best interest of the patient. 5
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Detainment in the institution In one situation, a patient was detained in an institution against their will. The patient, who suffered from dementia, was placed in an institution because she went out at night and did not find her way home. The patient was restless and uneasy in the institution and wanted to go home. To avoid locking the door to the ward, the patient was followed closely through much of the day. The situation was examined by both the nursing team and management. The clinicians experienced the situation as difficult and had a feeling that the action was too restrictive and put the patient in unnecessary confinement. A variety of psychosocial and activating measures were taken to get the person to settle down, which only partially succeeded. Neither the nurses nor the management seemed to have an adequate understanding of the legislation governing the locking of doors in the institution. The clinicians did not have any clear idea about the patient’s competency to give consent. The staff’s frustration was directed at management, while the management directed theirs at the lawmakers and supervising authority. There was limited focus on their own responsibilities and how they could work constructively with the problem in the organisation. Although the patient eventually calmed down in the department, there was no real clarification of the ethical and legal aspects of the practice.
Clinicians’ emotional reaction The findings showed that clinicians react emotionally when the patient resists the assistance they or their families thought they needed.
An emotional strain The clinicians repeatedly stated that they experience an emotional strain when giving help against the patient’s will. They felt that they committed an assault and feared that their empathy could be compromised. This applied to all situations described above. One expressed as follows in relation to personal hygiene: ‘It does not feel right afterwards, you’ve done something against someone’s will and you use force’. The situation of detention in institutions was perceived as stressful because the response was unnecessarily restrictive. Carers also expressed that they experienced the situation with concealed medication as bothersome. Partly because they chose to act in ways that have negative aspects and partly because they felt they were acting against the law: I know I gave medicine to the person without consent, I even tricked the person by putting it in a delicious dessert I knew the patient would eat, but you feel rotten. It did hurt, it was not okay emotionally.
Discussion The purpose of this study was to examine ethical challenges in situations where the patient resists healthcare. The findings showed that clinicians made action choices in situations dealing with personal hygiene, concealed medication and detention in an institution. Such situations can be categorised as ‘everyday ethics’: situations that are imbedded in everyday clinical practice21 and are common in older people care settings.22 The findings showed that care against the patient’s will was appropriate in cases of cognitive impairment and/or extensive physical impairment. This is in line with international research.5,23
Dilemma, uncertainty or distress? The clinicians experienced the situations as demanding and stressful. The concept of moral distress is closely connected to everyday ethics and is based on Jameton’s24 theory. It distinguishes moral problems 6
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into three categories: moral uncertainty, moral dilemma and moral distress. Moral uncertainty arises when one does not quite understand of what the moral problem consists. With moral dilemmas, we see two or more possible solutions between which are difficult to choose. When we experience moral stress, we are aware of what action the situation requires, but these measures cannot be completed because of institutional barriers such as insufficient time, lack of support from management or other limitations.24 The findings show that carers had morally good intentions when they provided help against the patient’s will. This is in line with the Norwegian research10 showing that coercion was used to protect the patient or others and to implement the necessary care or treatment. Clinicians in this study, however, failed to document the decision to use force and inform the patient, relatives and supervising authority, as required by the legislation. Furthermore, the clinicians experienced that the assessments and documentation related to necessary medical care, consent and resistance were difficult. The clinicians had limited experience and expertise in the practice of law and experienced the system as bureaucratic and time-consuming. They also experienced supervisors more like an adversary than as a partner. The fact that use of force was not documented and informed about when there was legal basis for using it can help to maintain a moral stress that could have been reduced. Clinicians in this study seemed more concerned with ethical justifications than legal ones. They exhibited moral sensitivity and used ethics to justify their choice of action. According to Hamric,21 caregivers who are more attuned to the moral dimensions of patient care situations will often experience more moral distress than caregivers who are not. The legislation on patient and user rights1 is meant to ensure that patients without ability to give consent receive the required healthcare, such as measures related to personal hygiene. If the conditions for use of force are present, the legislation gives permission to ‘ . . . hold hands, feet and head during brushing, cleaning, showering and bathing which the patient resists’ (p. 23).13 Research shows that concealed medication is common in Norwegian nursing homes.11,25 In a policy statement on the Law on Patient and User Rights, it is stated as legal to carry out necessary dental treatment against the patient’s will, and to use concealed medication to achieve it. It states that ‘ . . . in order to implement the necessary regular examinations at a dental clinic, it may be necessary to give the patient a sedative so that the investigation and treatment can be done in a proper and least intrusive manner’ (pp. 13, 29). Moreover, it opens up to introducing the sedative in the patient’s jam when health professionals know that the patient will resist the necessary medication. It should be noted that concealed medication is only allowed when the alternative is more stressful for the patient than the violation involving the concealed medication (Norwegian Health Directorate).13 In this study, the clinicians’ assessment and practice were in line with the statutory text. According to the policy statement, concealed use of prescription drugs is such a serious infringement on patient autonomy that healthcare professionals should make the decisions only after consulting with other qualified healthcare professionals,13 as was done in the current situation. Our findings showed that it was the doctor, in consultation with the nurse, who made the decision on the medication, and the nurse was responsible for the administration. This practice is in accordance with the law. The situation can be described as an ethical dilemma where nurses found a solution they thought the best of different alternatives. However, there is reason to believe that the emotional stress they experienced would be reduced if they had documented and informed about the use of force in accordance with regulations. The findings showed that clinicians were eager to give patients a sense of freedom in situations where they were detained in an institution. Other research shows similar findings. To reduce the negative consequences of physical restraint by giving a resident who wants to ‘escape’ from the ward a sense of freedom without letting him go out was one of a wide variety of everyday ethics found in a study on moral case deliberation.22 However, our findings showed that clinicians failed to lock the door, on the grounds that they had no authority to do so. Instead, they chose to follow the patient closely, which they perceived as an unnecessarily intrusive method. The legislation on patient and user rights allows a patient to be admitted to or 7
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detained in a healthcare facility.1 How this is done practically is not crucial. Locking with a key, installation of code lock or electronic equipment that automatically locks the door for specific patients are appropriate technologies. The principle is that one should choose the solution that seems least intrusive. The findings of our study suggest that lack of knowledge and moral uncertainty resulted in an unnecessarily restrictive solution being chosen in this situation, which contributed to moral stress for the clinicians. Both in terms of help with personal hygiene and medication associated with dental visits, carers chose a course of action they did not think was legally justifiable, but closer analysis shows that it was. Hamric21 denotes the form of the stress this causes as unjustified moral distress. It is due to inadequate communication or lack of knowledge. It is reasonable to assume that increased knowledge of the law will reduce or eliminate this form of stress, and that it would in all respects have been better if the law had been properly followed in these situations. It would have ensured the patient’s legal rights, and the moral stress of the carers could be reduced with the knowledge that the legal aspects were addressed. The findings showed that carers were more likely to respect a patient’s refusal of help with personal hygiene than the patient’s relatives were, and that this was challenging. This is in line with other research, which shows that the ethical challenges related to collaboration with relatives are common in the care for the older people.3,22 Van der Dam et al.22 found that the perspective of the family added an extra dimension that made the cases more complex and increased the pressure on the caregiver, who felt stuck between the perspective of the family and their own and the institution’s values. Carers emphasised that patients themselves would primarily decide whether they would accept or reject the offer of help with personal hygiene, and in most situations, they avoided going against the patient’s preferences. Maybe that can be because when care is given in the patient’s own home, the roles between nurse and patient are characterised by the patient’s relative control and self-determination and the nurse’s role as a guest, as findings from other research show.26 The fact that relatives were more likely to override the patient may be related to be difficulty for relatives to accept a lower standard of hygiene for a family member with whom they live, because being well groomed is associated with dignity and a reduced standard is associated with a loss of dignity. The clinicians’ tendency to respect patient preferences is in line with the legislation on patient and user rights.1 Healthcare workers must use discretion in assessing whether help with personal hygiene is necessary. However, the policy statements provide a relatively detailed decision guide. Lack of personal hygiene that causes nuisance to the surroundings does not permit the use of force. As a rule, healthcare professionals are responsible for determining whether healthcare is in the patient’s best interest when the patient is not competent to give consent. Family members have a right to information and participation. The situations that referred to resistance to help with personal hygiene took place in settings where the help was provided by staff in the home care service. Informants say that the working methods of home care, where carers follow lists with predefined time allocations for each patient visit, do not allow for the required flexibility. Midtbø and Kva˚le27 suggest that home care is traditionally organised in a delimiting and fragmenting manner, which does not meet the need for integration, process and reciprocity for patients with dementia. They recommend a system- and network-oriented service that is built from the bottom-up, around the patient. This may contribute to an understanding of the totality of which the dementia patient is part, and the resources and problems that characterise the situation. Before coercion is applied, confidence-building measures should be attempted.1 In order to create confidence, the services should be characterised by holistic thinking with good environmental initiatives, the staff should know the patients and have sufficient time and there should be a close collaboration with the families. A Finnish study28 found that job demands strongly increased the risk of physical restraint use in older people care units where nurses reported low job control. They conclude that restraint use can be reduced by enhancing working conditions so that the nursing staff has possibilities for skill usage and decision-making. Likewise, De Veer Anke et al.29 found that high moral distress level is associated with lower job satisfaction, turnover and early retirement. They also 8
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found that nurses were more likely to experience moral distress if consultant possibilities are low and when an instrumental leadership style exists.
Methodological discussion Lessons learned from the study indicate that the method clinical application research contributed to a learning process with raised awareness and where participants moved from moral uncertainty to a greater degree of moral certainty. This is in line with research where similar methods are used. Van der Dam et al.30 used the Moral Case Deliberation, a method that, similar to clinical application research, can be described as a deliberative and collective form of moral reflection among practitioners. They found in their study that gaining experience with the method brought about a learning process in which the learning of competence for an exploratory attitude was a key element. They also found that it brought about relief of moral distress, something we cannot conclude with certainty.
Conclusion The study showed that situations where older patients in the municipality health services resist help intended to fulfil the basic need for security and keeping the body clean and whole are professionally challenging and emotionally stressful for health professionals. The situations can be described as everyday ethics and are more characterised by moral uncertainty and moral distress than by being classic ethical dilemmas. Considerations about whether the patient’s self-determination should be respected or assistance should be given against the patient’s will are complex and require knowledge of the individual patient, nursing knowledge, ethical and legal expertise and an appropriate organisation of the services. The analysis shows that the clinicians’ professional and ethical considerations corresponded well with recent Norwegian legislation governing the use of force. The study furthermore raised awareness with new options for actions. However, better knowledge of the law, and increased competence in practicing in accordance with the law, would strengthen carers’ decision-making basis and thereby reduce moral uncertainty and moral stress. Acknowledgements All authors have contributed to design, data collection, analyses and interpretation. K.B. has written the article and the others contributed with critical advising. All authors have accepted the final manuscript. Conflict of interest The authors declare that there is no conflict of interest. Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. References 1. Helse- og omsorgsdepartementet [The Norwegian Ministry of Health and Care Services]. Lov om pasient- og brukerrettigheter [The legislation on patient and user rights]. Oslo: The Norwegian Ministry of Health and Care Services, 1999. 2. Bauchamps TL and Childress JF. Principles of biomedical ethics. 7th ed. Oxford: Oxford University Press, Inc., 2012. 9
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3. Bolling G, Pedersen R and Førde R. Etikk i sykehjem og hjemmetjenester [Ethics in nursing homes and home care nursing]. Forskning nr. 3 [Research no. 3], 2009, vol. 4, pp. 186–196. 4. Ulrich CM, Taylor C, Soeken K, et al. Everyday ethics: ethical issues and stress in nursing practice. J Adv Nurs 2010; 66: 2510–2519. 5. Kirkevold Ø and Engedal K. Prevalence of patients subjected to constraint in Norwegian nursing homes. Scand J Caring Sci 2004; 18: 281–286. 6. Hamers JP and Huizing AR. Why do we use physical restraint in the elderly? Z Gerontol Geriatr 2005; 38(1): 19–25. 7. Evans D and FitzGerald M. Reasons for physically restraining patients and residents: a systematic review and content analysis. Int J Nurs Stud 2002; 39: 735–743. 8. Evans D, Wood J and Lambert L. Patient injury and physical restraint devices: a systematic review. J Adv Nurs 2003; 41: 274–228. 9. Hantikainen V and Ka¨ppeli S. Using restraint with nursing home residents: a qualitative study of nursing staff perceptions and decision-making. J Adv Nurs 2000; 32(5): 1196–1205. 10. Kirkevold Ø and Engedal K. A study into the use of restraint in nursing homes in Norway. Br J Nurs 2004; 13(15): 902–905. 11. Kirkevold Ø and Engedal K. Concealment of drugs in food and beverages in nursing homes: cross sectional study. BMJ 2005; 330(7481): 20. 12. Kirkevold Ø and Engedal K. The quality of care in Norwegian nursing homes. Scand J Caring Sci 2006; 20(2): 177–183. 13. Helsedirektoratet [The Norwegian Directorate of Health]. Lov om pasientrettigheter kapittel 4A – Helsehjelp til pasienter uten samtykkekompetanse som motsetter seg helsehjelpen, Rundskriv 10 [Patient Rights Act chapter 4A – health care for patients without ability to give consent and who resists health care, Circular 10]. Oslo: Helsedirektoratet [The Norwegian Directorate of Health], 2008. 14. Helsetilsynet [The Norwegian Board of Health Supervision]. Tvil om tvang. Oppsummering av landsomfattende tilsyn i 2011 og 2012 med tvungen helsehjelp til pasienter i sykehjem [Doubt about coercion. Summary of countrywide supervision of compulsory health care for patients in nursing homes in 2011 and 2012]. Rapport 5/2013 [Report 5/2013], April 2013. Oslo: Helsetilsynet [The Norwegian Board of Health Supervision]. 15. Lindholm L. Klinisk applikationsforskning – en forskningsansats fo¨r va˚rdvetenskapens tilla¨gnande [Clinical application research: a research approach to the appropriation of caring science]. I: Eriksson K and ˚ (Eds) Gryning II: Klinisk va˚rdvetenskap [Dawning II: Clinical nursing science]. Vasa: A ˚ bo Lindstro¨m UA ˚ bo Academy, Institution for Nursing Science], 2003, Akademi, Institutionen fo¨r va˚rdvetenskap [Vasa: A pp. 47–62. 16. Gadamer H-G. Truth and method. New York: Continuum Publishing Company, 1999. 17. Lindholm L, Nieminen AL, Ma¨kela¨ C, et al. Clinical application research: a hermeneutical approach to the appropriation of caring science. Qual Health Res 2006; 16(1): 137–150. 18. Hummelvoll J-K and Severinsson E. Researcher’s experience of co-operative inquiry in acute mental health care. J Adv Nurs 2005; 52(2): 180–188. 19. Hummelvoll JK (red.) Kunnskapsdannelse i praksis: handlingsorientert forskningssamarbeid i akuttpsykiatrien. Oslo: Universitetsforlaget, 2003. 20. World Medical Association Declaration of Helsinki. Ethical principles for medical research involving human subjects. Seoul, South Korea, http://www.wma.net/en/30publications/10policies/b3/index.html (2008, accessed 14 January 2011). 21. Hamric AB. Moral distress in everyday ethics. Nurs Outlook 2000; 48: 199–201. 22. Van der Dam S, Abma TS, Kardol MJM, et al. ‘Here’s My Dilemma’. Moral case deliberation as a platform for discussing everyday ethics in elderly care. Health Care Anal 2012; 20: 250–267. 23. Castle NG, Fogel B and Mor V. Risk factors for physical restraint use in nursing homes: pre and post-implementation of the Nursing Home Reform Act. Gerontologist 1997; 37: 737–747. 10
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24. Jameton A. Nursing practice: the ethical issues. London; Englewood Cliffs, NJ: Prentice Hall, 1984. 25. Kirkevold Ø and Engedal K. Is covert medication in Norwegian nursing homes still a problem? A cross-sectional study. Drugs Aging 2009; 26(4): 333–344. 26. Mc Garry J. Defining roles, relationships, boundaries and participation between elderly people and nurses within the home: an ethnographic study. Health Soc Care Community 2008; 17(1): 83–91. 27. Midtbø T and Kva˚le G. Perspektiver pa˚ samspel, kontinuitet og kvalitet i omsorgstjenester for pasientar med demens i heimetjenesta [Perspectives on cooperation, continuity and quality in nursing for patients with dementia in home care nursing]. Norsk tidsskrift for Sykepleieforskning [Norwegian J Nurs Res] 2010; 12(3): 37–47. 28. Pekkarainen L, Elovainio M, Sinervo T, et al. Nursing working conditions in relation to restraint practices in long-term care units. Med Care 2006; 44(12): 1114–1120. 29. De Veer Anke JE, Francke AL, Struijs A, et al. Determinants of moral distress in daily nursing practice: a cross sectional correlational questionnaire survey. Int J Nurs Stud 2013; 50: 100–108. 30. Van der Dam S, Schols JMGA, Kardol TMJ, et al. The discovery of deliberation. From ambiguity to appreciation through the learning process of doing Moral Case Deliberation in Dutch elderly care. Soc Sci & Med 2013; 83: 125–132.
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Ethical challenges in care for older patients who resist help
Nursing Ethics 1–11 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014542672 nej.sagepub.com
Kari Brodtkorb, Anne Valen-Sendstad Skisland, ˚ shild Slettebø and Ragnhild Skaar A University of Agder, Norway
Abstract Background: Situations where patients resist necessary help can be professionally and ethically challenging for health professionals, and the risk of paternalism, abuse and coercion are present. Research question: The purpose of this study was to examine ethical challenges in situations where the patient resists healthcare. Research design: The method used was clinical application research. Academic staff and clinical coresearchers collaborated in a hermeneutical process to shed light on situations and create a basis for new action. Participants and research context: Four research groups were established. Each group consisted of six to eight clinical co-researchers, all employees with different health profession backgrounds and from different parts of the municipal healthcare services, and two scientific researchers. Ethical considerations: The study was conducted in compliance with ethical guidelines and principles. Participants were informed that participation was voluntary and that confidentiality would be maintained. They signed a consent form. Findings: The findings showed that the situations where patients opposed help related to personal hygiene, detention in an institution and medication associated with dental treatment. The situations were perceived as demanding and emotionally stressful for the clinicians. Discussion: The situations can be described as everyday ethics and are more characterised by moral uncertainty and moral distress than by being classic ethical dilemmas. Conclusion: Norwegian legislation governing the use of force seems to provide decision guidance with the potential to reduce uncertainty and moral stress if the clinicians’ legal competence had been greater. Keywords Community healthcare, everyday ethics, moral distress, patient autonomy, restraint
Introduction The starting point for health professionals is legislation and an occupational code that indicates that help should be given voluntarily and with consent.1 The principle of patient autonomy is solidly embedded in Western philosophy and ethics and is increasingly emphasised in clinical practice, professional ethics and health legislation.2 The principle justifies the moral rule that health professionals should provide help based
Corresponding author: Kari Brodtkorb, Centre for Caring Research, Faculty for Health and Sport Sciences, University of Agder, P.O. Box 509, 4898 Grimstad, Norway. Email: [email protected]
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on the patient’s consent. When health professionals encounter patients who resist the help they consider as necessary, they find themselves in a difficult situation where the risk of paternalism, abuse and coercion are present. Two studies have found that questions concerning autonomy and informed consent to treatment are common and stressful ethical issues faced by nurses in everyday practice.3,4 Physical restraints are frequently used in the care of older people5 for a variety of purposes, such as decreasing the risk of falls and injuries,6 preventing interference with treatment,5,7 controlling behaviour and lack of nursing staff.7 Using physical restraint is associated with impaired mobility, cognition and social functioning and behavioural symptoms in patients6,8 and moral uncertainty9 and moral distress in nurses, who are also subjected to violence from patients in these situations.3 Kirkevold and Engedal have in several studies documented that the use of force against residents of Norwegian nursing homes is extensive and problematic.5,10–12 These findings formed the basis for the development of legislation that authorises the use of force and that shall ensure legal protection for people who are unable to consent to medical care, independent of cognitive impairment.1,13 The purpose is to prevent significant damage to health and to regulate and restrict coercion. Five years later, an enquiry found extensive use of force in violation of the law, and that regulations are not well enough known and incorporated into practice.14 The literature review thus shows that there is some knowledge of the subject, but how caregivers address ethical challenges has not been adequately explored. The purpose of this study was to examine ethical challenges in situations where the patient resists healthcare.
Design and method The study has a qualitative and empirical design and the method is clinical application research. The study is part of a larger research project focussing on systematic ethics work in older people care in Norwegian municipal health services. The context is a medium-size municipality in Norway with approximately 20,000 inhabitants. The municipality has two nursing homes and home-based healthcare divided into three geographical zones.
Clinical application research Clinical application research is a method based on hermeneutic research understanding. Scientific researchers and clinical co-researchers take part in groups, which over time cooperate in a hermeneutic research process to gain knowledge of a phenomenon.15 The clinical co-researchers bring in situations from their practice in the groups, and through description, reflection and interpretation of theoretical knowledge the basis is created for a new plan of action that clinicians try between group sessions. The scientific researchers have a special responsibility to bring in theoretical knowledge. However, everyone participates in an interpretation that enables what Gadamer16 calls horizontal fusion, resulting in new knowledge. Three assumptions are considered fundamental for the development of knowledge: participation and integrated knowledge, critical subjectivity and knowledge in action.17 Participation and integrated knowledge implies that the clinical and scientific researchers are equal in the process and work together towards a common integrated understanding. Critical subjectivity involves critically assessing and analysing the phenomenon based on the individual participants’ subjective understanding. The aim is to raise awareness so that new knowledge and new options for action can be explored and developed.17,18
Data production Four research groups were established that met totally 15 times, three to four times each at regular intervals during the period from autumn 2010 to spring 2011. Each group consisted of six to eight clinical co2
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researchers (24 women and 2 men) and two scientific researchers. Employees with different health profession background, registered nurses, enrolled nurses, physiotherapists and managers and from different parts of the municipal healthcare services, were the clinical co-researchers in the groups. In the fourth group, the clinical co-researchers were managers at various levels. This variety of backgrounds and experience constituted the clinical co-researchers’ (hereafter called the clinicians) pre-understanding. The scientific researchers (hereafter called the authors) are all nurses at PhD level with experience in older people care. The authors led group sessions, which were structured in line with the phase classification in clinical application research according to Hummelvoll.19 The following phases were conducted: (a) the participants came to an agreement on the challenges or situations that should be highlighted and discussed, (b) participants decided how these challenges could be met in practice, (c) participants elaborated on the challenges and the practices they were in and (d) participants re-reflected on experiences from testing in the following team meeting.
Analysis Group interviews were audiotaped, transcribed and preliminarily analysed after each collection. This was done to clarify action alternatives and bring in relevant theory for use in the next meeting. A hermeneutical interpretation was made in line with Gadamer.16 Care ethics and ethical and legal principles, such as selfdetermination and free will, constituted the theoretical understanding and the interpretation perspective from which the authors interpreted the findings. A preliminary analysis was carried out and was presented to the clinicians in a validation seminar. They provided suggestions that were incorporated into the findings. The entire text was read through to obtain a general impression and then divided into units that were condensed and grouped into the following two sub-themes: (a) the clinicians’ choice of action, with the following three categories: personal hygiene, concealed medication and detention in an institution and (b) the clinicians’ emotional reaction with the category: an emotional strain. The two sub-themes were combined in an overarching theme: when the patient resists help. All the authors followed the analysis process and used discussion to reach a consensus on the interpretation of data.
Research ethical considerations The study was conducted in compliance with ethical guidelines and ethical principles.2,20 Participants were informed that participation was voluntary and that confidentiality would be maintained. They signed a consent form. The study was approved by the Norwegian Social Science Data Services (NSD), a center for research method and research ethics (project no. 24401).
Results The two sub-themes with categories will be presented below.
Clinicians’ choice of action The findings showed that clinicians in situations related to basic care giving activities had real choices in action and made decisions based on their best professional and moral judgment. 3
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Personal hygiene In some situations, all with at-home patients, relatives insisted that the help be given. The patients had limited activity level due to somatic and/or cognitive impairment. The staff saw the patients’ need for assistance, but were unsure to what degree the help was required. Relatives had higher hygiene standards than the patients themselves, and higher than what the clinicians felt comfortable providing, given that the patient did not want it. In one case, the family and staff agreed that help was needed, but had different views on how it should be given. While family members wanted the patient to do as much as possible themselves to maintain functional ability, the staff saw this as stressful for the patient and thought compensatory help was needed. After further assessment, the clinicians believed that the help was not strictly necessary, and that it was therefore appropriate to offer it, but to also accept the patient’s refusal. The clinicians endeavoured to keep open communication with the patient: ‘Having a really good conversation and being honest, is not achieved in five minutes’. It turned out that a good conversation was not so easy to achieve, because the patient did not want it or because the staff did not manage it. The consequence of discussing the situation with colleagues could be different than planned: ‘We brought it up in the staff group and agreed that she should be able to choose [help with personal hygiene] herself. I told her and she was very happy’. Open communication with relatives was also considered desirable: ‘Perhaps families also need someone to talk to, because they are not in a simple situation. Maybe they need information about what growing old is like and how we can’t override the patient’s wishes’. Coercion was sometimes used in care situations. That some were more successful than others in avoiding coercion was a phenomenon clinicians were familiar with, but which usually was not communicated between nurses or discussed with the patient: The patient behaves differently depending on who is coming and relates better with some than with others. Maybe it something to do with personality, with how calm the person is, I do not know. I do not think anyone has asked those questions to the patient.
Actions that were tried successfully were to ensure that clinicians as far as possible had the necessary time available, so they avoided forcing the pace and thereby provoking resistance. Home nurses work from preconfigured lists based on estimated time for the individual patient. It was not problematic to set aside more time if needed. However, time needs still varied from day to day, and sometimes more time than planned was needed for the quality to be good. Then, the next patient had to wait: ‘Our work lists are planned out so that all employees have enough to do, it is a rat race, really’. In other situations, the clinicians deemed the help as needed. They referred to patients with dementia who received help from home nurses. Sometimes, it was given by coercion: She holds onto our clothes. We have to bend the fingers up, start with the little finger and open the hands. Sometimes we have to be two people. One is talking and the other does the action. And it does happen that the patient becomes aggressive, hits and yells.
In this case, the clinicians assessed the help as necessary and found that the patient lacked ability to consent. Still, no compulsory intervention decision was made, as required by the law. The clinicians appeared to have limited awareness that they exercised coercion and lacked knowledge of the regulations governing the use of force. They stated that it was particularly challenging to avoid coercion in assisted living. Here, the help was given by nurses within a predefined schedule. In home care, it was also a challenge that each patient was visited by many nurses: 4
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We are notorious for that. That is a weakness in the home care; there are many new faces and too little continuity. However, management is now very willing to change this. Now we have new rotas which mean that for the most part there are four people who go to one patient.
The clinicians still concluded on several occasions that inflexibility was a challenge in the home care service. If it proved impossible to carry out chores on time, it was always possible to try later. It was questioned how suitable assisted living without a permanent staff is for people with dementia: ‘Shouldn’t patients with this problem rather be in an institution?’
Concealed medication The clinicians sometimes gave patients sedatives without the patient’s knowledge. The aim could be to prevent unrest, or it could be needed to provide the help they thought patients needed. One situation dealt with involuntary dental treatment. A patient with dementia living in a nursing home had received notice to go to the dentist. The clinicians had previously found that the patient had resisted treatment and came back from the dentist without results. When the patient verbally resisted going they had, in agreement with the doctor and without the patient being aware of it, given a sedative beforehand. Family members followed the patient to the dentist. The visit was successful in the sense that the patient received dental treatment without resisting it, and the patient and family were satisfied on their return. The clinicians saw the episode as questionable and believed that the solution was not legally tenable. When the patient was called to the dentist again, they realised that all alternatives had negative aspects. They could suggest a dentist visit and accept a refusal from the patient. They considered that to be an untenable solution, as the consequences in the long term could be very distressing for the patient. They could take the patient to the dentist by force, which they considered as unnecessarily restrictive and therefore rejected. Furthermore, they could resolve the situation in the same way as before, by tricking the patient with a sedative. One clinician argued for this option: ‘The question is, what is the worst ethically? If the cavity in the tooth had been allowed to develop, it would have had become so painful that dental visits would be necessary’. One option discussed was to inform the supervising authority and wait with the dental visit in anticipation of a response. The clinicians checked this possibility further, but concluded that legislation did not open to allow medication against the patient’s will. It was suggested that someone with management responsibilities might be able to enter into dialogue with the authorities to find the best solution, before it was carried out. The clinicians concluded that it would be ethically irresponsible to fail to ensure that dental treatment could occur, and that it was impossible to implement without medication. Based on experience, they also perceived the supervising authority as more of an adversary than as a partner. It was therefore of limited interest to enter into a dialogue with them about the issues they experienced as a legal grey area. It was also seen as cumbersome and time consuming, and they were not experienced with regard to assessing consent and formulating the necessary documentation. They decided that they had to make a decision on their own, and when the choice was between following the law, which most likely would have as a consequence that the patient did not receive dental care, and to give the hidden sedative, they chose the latter: I think the patient suffers the least in the option we chose. The person in question did not have to dread the visit long in advance because we deliberately chose not to mention it. The patient was calm and relaxed and we avoided having to use physical force.
They chose the option they assessed as being least intrusive and in the best interest of the patient. 5
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Detainment in the institution In one situation, a patient was detained in an institution against their will. The patient, who suffered from dementia, was placed in an institution because she went out at night and did not find her way home. The patient was restless and uneasy in the institution and wanted to go home. To avoid locking the door to the ward, the patient was followed closely through much of the day. The situation was examined by both the nursing team and management. The clinicians experienced the situation as difficult and had a feeling that the action was too restrictive and put the patient in unnecessary confinement. A variety of psychosocial and activating measures were taken to get the person to settle down, which only partially succeeded. Neither the nurses nor the management seemed to have an adequate understanding of the legislation governing the locking of doors in the institution. The clinicians did not have any clear idea about the patient’s competency to give consent. The staff’s frustration was directed at management, while the management directed theirs at the lawmakers and supervising authority. There was limited focus on their own responsibilities and how they could work constructively with the problem in the organisation. Although the patient eventually calmed down in the department, there was no real clarification of the ethical and legal aspects of the practice.
Clinicians’ emotional reaction The findings showed that clinicians react emotionally when the patient resists the assistance they or their families thought they needed.
An emotional strain The clinicians repeatedly stated that they experience an emotional strain when giving help against the patient’s will. They felt that they committed an assault and feared that their empathy could be compromised. This applied to all situations described above. One expressed as follows in relation to personal hygiene: ‘It does not feel right afterwards, you’ve done something against someone’s will and you use force’. The situation of detention in institutions was perceived as stressful because the response was unnecessarily restrictive. Carers also expressed that they experienced the situation with concealed medication as bothersome. Partly because they chose to act in ways that have negative aspects and partly because they felt they were acting against the law: I know I gave medicine to the person without consent, I even tricked the person by putting it in a delicious dessert I knew the patient would eat, but you feel rotten. It did hurt, it was not okay emotionally.
Discussion The purpose of this study was to examine ethical challenges in situations where the patient resists healthcare. The findings showed that clinicians made action choices in situations dealing with personal hygiene, concealed medication and detention in an institution. Such situations can be categorised as ‘everyday ethics’: situations that are imbedded in everyday clinical practice21 and are common in older people care settings.22 The findings showed that care against the patient’s will was appropriate in cases of cognitive impairment and/or extensive physical impairment. This is in line with international research.5,23
Dilemma, uncertainty or distress? The clinicians experienced the situations as demanding and stressful. The concept of moral distress is closely connected to everyday ethics and is based on Jameton’s24 theory. It distinguishes moral problems 6
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into three categories: moral uncertainty, moral dilemma and moral distress. Moral uncertainty arises when one does not quite understand of what the moral problem consists. With moral dilemmas, we see two or more possible solutions between which are difficult to choose. When we experience moral stress, we are aware of what action the situation requires, but these measures cannot be completed because of institutional barriers such as insufficient time, lack of support from management or other limitations.24 The findings show that carers had morally good intentions when they provided help against the patient’s will. This is in line with the Norwegian research10 showing that coercion was used to protect the patient or others and to implement the necessary care or treatment. Clinicians in this study, however, failed to document the decision to use force and inform the patient, relatives and supervising authority, as required by the legislation. Furthermore, the clinicians experienced that the assessments and documentation related to necessary medical care, consent and resistance were difficult. The clinicians had limited experience and expertise in the practice of law and experienced the system as bureaucratic and time-consuming. They also experienced supervisors more like an adversary than as a partner. The fact that use of force was not documented and informed about when there was legal basis for using it can help to maintain a moral stress that could have been reduced. Clinicians in this study seemed more concerned with ethical justifications than legal ones. They exhibited moral sensitivity and used ethics to justify their choice of action. According to Hamric,21 caregivers who are more attuned to the moral dimensions of patient care situations will often experience more moral distress than caregivers who are not. The legislation on patient and user rights1 is meant to ensure that patients without ability to give consent receive the required healthcare, such as measures related to personal hygiene. If the conditions for use of force are present, the legislation gives permission to ‘ . . . hold hands, feet and head during brushing, cleaning, showering and bathing which the patient resists’ (p. 23).13 Research shows that concealed medication is common in Norwegian nursing homes.11,25 In a policy statement on the Law on Patient and User Rights, it is stated as legal to carry out necessary dental treatment against the patient’s will, and to use concealed medication to achieve it. It states that ‘ . . . in order to implement the necessary regular examinations at a dental clinic, it may be necessary to give the patient a sedative so that the investigation and treatment can be done in a proper and least intrusive manner’ (pp. 13, 29). Moreover, it opens up to introducing the sedative in the patient’s jam when health professionals know that the patient will resist the necessary medication. It should be noted that concealed medication is only allowed when the alternative is more stressful for the patient than the violation involving the concealed medication (Norwegian Health Directorate).13 In this study, the clinicians’ assessment and practice were in line with the statutory text. According to the policy statement, concealed use of prescription drugs is such a serious infringement on patient autonomy that healthcare professionals should make the decisions only after consulting with other qualified healthcare professionals,13 as was done in the current situation. Our findings showed that it was the doctor, in consultation with the nurse, who made the decision on the medication, and the nurse was responsible for the administration. This practice is in accordance with the law. The situation can be described as an ethical dilemma where nurses found a solution they thought the best of different alternatives. However, there is reason to believe that the emotional stress they experienced would be reduced if they had documented and informed about the use of force in accordance with regulations. The findings showed that clinicians were eager to give patients a sense of freedom in situations where they were detained in an institution. Other research shows similar findings. To reduce the negative consequences of physical restraint by giving a resident who wants to ‘escape’ from the ward a sense of freedom without letting him go out was one of a wide variety of everyday ethics found in a study on moral case deliberation.22 However, our findings showed that clinicians failed to lock the door, on the grounds that they had no authority to do so. Instead, they chose to follow the patient closely, which they perceived as an unnecessarily intrusive method. The legislation on patient and user rights allows a patient to be admitted to or 7
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detained in a healthcare facility.1 How this is done practically is not crucial. Locking with a key, installation of code lock or electronic equipment that automatically locks the door for specific patients are appropriate technologies. The principle is that one should choose the solution that seems least intrusive. The findings of our study suggest that lack of knowledge and moral uncertainty resulted in an unnecessarily restrictive solution being chosen in this situation, which contributed to moral stress for the clinicians. Both in terms of help with personal hygiene and medication associated with dental visits, carers chose a course of action they did not think was legally justifiable, but closer analysis shows that it was. Hamric21 denotes the form of the stress this causes as unjustified moral distress. It is due to inadequate communication or lack of knowledge. It is reasonable to assume that increased knowledge of the law will reduce or eliminate this form of stress, and that it would in all respects have been better if the law had been properly followed in these situations. It would have ensured the patient’s legal rights, and the moral stress of the carers could be reduced with the knowledge that the legal aspects were addressed. The findings showed that carers were more likely to respect a patient’s refusal of help with personal hygiene than the patient’s relatives were, and that this was challenging. This is in line with other research, which shows that the ethical challenges related to collaboration with relatives are common in the care for the older people.3,22 Van der Dam et al.22 found that the perspective of the family added an extra dimension that made the cases more complex and increased the pressure on the caregiver, who felt stuck between the perspective of the family and their own and the institution’s values. Carers emphasised that patients themselves would primarily decide whether they would accept or reject the offer of help with personal hygiene, and in most situations, they avoided going against the patient’s preferences. Maybe that can be because when care is given in the patient’s own home, the roles between nurse and patient are characterised by the patient’s relative control and self-determination and the nurse’s role as a guest, as findings from other research show.26 The fact that relatives were more likely to override the patient may be related to be difficulty for relatives to accept a lower standard of hygiene for a family member with whom they live, because being well groomed is associated with dignity and a reduced standard is associated with a loss of dignity. The clinicians’ tendency to respect patient preferences is in line with the legislation on patient and user rights.1 Healthcare workers must use discretion in assessing whether help with personal hygiene is necessary. However, the policy statements provide a relatively detailed decision guide. Lack of personal hygiene that causes nuisance to the surroundings does not permit the use of force. As a rule, healthcare professionals are responsible for determining whether healthcare is in the patient’s best interest when the patient is not competent to give consent. Family members have a right to information and participation. The situations that referred to resistance to help with personal hygiene took place in settings where the help was provided by staff in the home care service. Informants say that the working methods of home care, where carers follow lists with predefined time allocations for each patient visit, do not allow for the required flexibility. Midtbø and Kva˚le27 suggest that home care is traditionally organised in a delimiting and fragmenting manner, which does not meet the need for integration, process and reciprocity for patients with dementia. They recommend a system- and network-oriented service that is built from the bottom-up, around the patient. This may contribute to an understanding of the totality of which the dementia patient is part, and the resources and problems that characterise the situation. Before coercion is applied, confidence-building measures should be attempted.1 In order to create confidence, the services should be characterised by holistic thinking with good environmental initiatives, the staff should know the patients and have sufficient time and there should be a close collaboration with the families. A Finnish study28 found that job demands strongly increased the risk of physical restraint use in older people care units where nurses reported low job control. They conclude that restraint use can be reduced by enhancing working conditions so that the nursing staff has possibilities for skill usage and decision-making. Likewise, De Veer Anke et al.29 found that high moral distress level is associated with lower job satisfaction, turnover and early retirement. They also 8
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found that nurses were more likely to experience moral distress if consultant possibilities are low and when an instrumental leadership style exists.
Methodological discussion Lessons learned from the study indicate that the method clinical application research contributed to a learning process with raised awareness and where participants moved from moral uncertainty to a greater degree of moral certainty. This is in line with research where similar methods are used. Van der Dam et al.30 used the Moral Case Deliberation, a method that, similar to clinical application research, can be described as a deliberative and collective form of moral reflection among practitioners. They found in their study that gaining experience with the method brought about a learning process in which the learning of competence for an exploratory attitude was a key element. They also found that it brought about relief of moral distress, something we cannot conclude with certainty.
Conclusion The study showed that situations where older patients in the municipality health services resist help intended to fulfil the basic need for security and keeping the body clean and whole are professionally challenging and emotionally stressful for health professionals. The situations can be described as everyday ethics and are more characterised by moral uncertainty and moral distress than by being classic ethical dilemmas. Considerations about whether the patient’s self-determination should be respected or assistance should be given against the patient’s will are complex and require knowledge of the individual patient, nursing knowledge, ethical and legal expertise and an appropriate organisation of the services. The analysis shows that the clinicians’ professional and ethical considerations corresponded well with recent Norwegian legislation governing the use of force. The study furthermore raised awareness with new options for actions. However, better knowledge of the law, and increased competence in practicing in accordance with the law, would strengthen carers’ decision-making basis and thereby reduce moral uncertainty and moral stress. Acknowledgements All authors have contributed to design, data collection, analyses and interpretation. K.B. has written the article and the others contributed with critical advising. All authors have accepted the final manuscript. Conflict of interest The authors declare that there is no conflict of interest. Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. References 1. Helse- og omsorgsdepartementet [The Norwegian Ministry of Health and Care Services]. Lov om pasient- og brukerrettigheter [The legislation on patient and user rights]. Oslo: The Norwegian Ministry of Health and Care Services, 1999. 2. Bauchamps TL and Childress JF. Principles of biomedical ethics. 7th ed. Oxford: Oxford University Press, Inc., 2012. 9
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3. Bolling G, Pedersen R and Førde R. Etikk i sykehjem og hjemmetjenester [Ethics in nursing homes and home care nursing]. Forskning nr. 3 [Research no. 3], 2009, vol. 4, pp. 186–196. 4. Ulrich CM, Taylor C, Soeken K, et al. Everyday ethics: ethical issues and stress in nursing practice. J Adv Nurs 2010; 66: 2510–2519. 5. Kirkevold Ø and Engedal K. Prevalence of patients subjected to constraint in Norwegian nursing homes. Scand J Caring Sci 2004; 18: 281–286. 6. Hamers JP and Huizing AR. Why do we use physical restraint in the elderly? Z Gerontol Geriatr 2005; 38(1): 19–25. 7. Evans D and FitzGerald M. Reasons for physically restraining patients and residents: a systematic review and content analysis. Int J Nurs Stud 2002; 39: 735–743. 8. Evans D, Wood J and Lambert L. Patient injury and physical restraint devices: a systematic review. J Adv Nurs 2003; 41: 274–228. 9. Hantikainen V and Ka¨ppeli S. Using restraint with nursing home residents: a qualitative study of nursing staff perceptions and decision-making. J Adv Nurs 2000; 32(5): 1196–1205. 10. Kirkevold Ø and Engedal K. A study into the use of restraint in nursing homes in Norway. Br J Nurs 2004; 13(15): 902–905. 11. Kirkevold Ø and Engedal K. Concealment of drugs in food and beverages in nursing homes: cross sectional study. BMJ 2005; 330(7481): 20. 12. Kirkevold Ø and Engedal K. The quality of care in Norwegian nursing homes. Scand J Caring Sci 2006; 20(2): 177–183. 13. Helsedirektoratet [The Norwegian Directorate of Health]. Lov om pasientrettigheter kapittel 4A – Helsehjelp til pasienter uten samtykkekompetanse som motsetter seg helsehjelpen, Rundskriv 10 [Patient Rights Act chapter 4A – health care for patients without ability to give consent and who resists health care, Circular 10]. Oslo: Helsedirektoratet [The Norwegian Directorate of Health], 2008. 14. Helsetilsynet [The Norwegian Board of Health Supervision]. Tvil om tvang. Oppsummering av landsomfattende tilsyn i 2011 og 2012 med tvungen helsehjelp til pasienter i sykehjem [Doubt about coercion. Summary of countrywide supervision of compulsory health care for patients in nursing homes in 2011 and 2012]. Rapport 5/2013 [Report 5/2013], April 2013. Oslo: Helsetilsynet [The Norwegian Board of Health Supervision]. 15. Lindholm L. Klinisk applikationsforskning – en forskningsansats fo¨r va˚rdvetenskapens tilla¨gnande [Clinical application research: a research approach to the appropriation of caring science]. I: Eriksson K and ˚ (Eds) Gryning II: Klinisk va˚rdvetenskap [Dawning II: Clinical nursing science]. Vasa: A ˚ bo Lindstro¨m UA ˚ bo Academy, Institution for Nursing Science], 2003, Akademi, Institutionen fo¨r va˚rdvetenskap [Vasa: A pp. 47–62. 16. Gadamer H-G. Truth and method. New York: Continuum Publishing Company, 1999. 17. Lindholm L, Nieminen AL, Ma¨kela¨ C, et al. Clinical application research: a hermeneutical approach to the appropriation of caring science. Qual Health Res 2006; 16(1): 137–150. 18. Hummelvoll J-K and Severinsson E. Researcher’s experience of co-operative inquiry in acute mental health care. J Adv Nurs 2005; 52(2): 180–188. 19. Hummelvoll JK (red.) Kunnskapsdannelse i praksis: handlingsorientert forskningssamarbeid i akuttpsykiatrien. Oslo: Universitetsforlaget, 2003. 20. World Medical Association Declaration of Helsinki. Ethical principles for medical research involving human subjects. Seoul, South Korea, http://www.wma.net/en/30publications/10policies/b3/index.html (2008, accessed 14 January 2011). 21. Hamric AB. Moral distress in everyday ethics. Nurs Outlook 2000; 48: 199–201. 22. Van der Dam S, Abma TS, Kardol MJM, et al. ‘Here’s My Dilemma’. Moral case deliberation as a platform for discussing everyday ethics in elderly care. Health Care Anal 2012; 20: 250–267. 23. Castle NG, Fogel B and Mor V. Risk factors for physical restraint use in nursing homes: pre and post-implementation of the Nursing Home Reform Act. Gerontologist 1997; 37: 737–747. 10
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