Original Manuscript
Ethical challenges when intensive care unit patients refuse nursing care: A narrative approach
Nursing Ethics 1–9 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014560931 nej.sagepub.com
Eva Martine Bull Oslo University Hospital, Norway; Lovisenberg Diaconal University College, Norway
Venke Sørlie Lovisenberg Diaconal University College, Norway
Abstract Background: Less sedated and more awake patients in the intensive care unit may cause ethical challenges. Research objectives: The purpose of this study is to describe ethical challenges registered nurses experience when patients refuse care and treatment. Research design: Narrative individual open interviews were conducted, and data were analysed using a phenomenological hermeneutic method developed for researching life experiences. Participants and research context: Three intensive care registered nurses from an intensive care unit at a university hospital in Norway were included. Ethical considerations: Norwegian Social Science Data Services approved the study. Permission was obtained from the intensive care unit leader. The participants’ informed and voluntary consent was obtained in writing. Findings: Registered nurses experienced ethical challenges in the balance between situations of deciding on behalf of the patient, persuading the patient and letting the patient decide. Ethical challenges were related to patients being harmful to themselves, not keeping up personal hygiene and care or hindering critical treatment. Discussion: It is made apparent how professional ethics may be threatened by more pragmatic arguments. In recent years, registered nurses are faced with increasing ethical challenges to do no harm and maintain dignity. Conclusion: Ethically challenging situations are emerging, due to new targets including conscious and aware critical care patients, leaving an altered responsibility on the registered nurses. Reflection is required to adjust the course when personal and professional ideals no longer are in harmony with the reality in the clinical practice. RNs must maintain a strong integrity as authentic human beings to provide holistic nursing care. Keywords Ethical challenges, intensive care unit nurse, narrative interviews, patients, phenomenological hermeneutic method, sedation
Corresponding author: Eva Martine Bull, Intensive Care Unit 1, Division of Emergencies and Critical Care, Oslo University Hospital, Rikshospitalet, Sognsvannsveien 20, 0372 Oslo, Norway. Email: [email protected]
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Introduction Registered nurses (RNs) meet critically ill patients who willingly accept medical help as well as patients who do not readily accept medical help. RNs have a duty to provide the highest level of healthcare, and the intensive care patient has the right to receive healthcare of the highest quality.1,2 Intensive care units (ICUs) are changing the clinical approach from a general deep level of sedation to target a light level of sedation in order to comply with the requirements of contemporary medical treatment.3–9 The shift towards generally awake critical care patients has created new ethical challenges for RNs.8,10 RNs are challenged by a lack of influence or courage to voice their opinion in addition to challenges concerning withdrawing and withholding treatment.10–13 RNs also narrate about challenges related to lifesaving at all costs, to remain in severe situations over time and being forced to make decisions concerning life and death.11,14 Some of the many challenges RNs face occur in situations where physicians and RNs believe they are better equipped to decide the optimal treatment for patients who refuse treatment either verbally or physically.10,13
Study purpose The purpose of this study is to describe ethical challenges RNs experience when patients refuse care and treatment.
Method Setting This study was conducted at a university hospital in Norway. All of the RNs in the ICUs had a 2-year postbachelor intensive care nurse speciality course. These RNs worked on a one-to-one basis with patients, assisted by a second RN.
Participants After the study was approved by Norwegian Social Science Data Services (NSD), the RN head staff at the ICU gave permission to conduct the study. All RNs with more than 5 years of experience were invited to participate, and the first three to respond were included.
Data collection According to Mishler,15 narratives provide the best data collection method to understand human experience. A way to understand moral choices is by studying carers’ narratives regarding their experiences from various care situations.16 A narrated story will reveal silent knowledge and add new insights.14 The study design is qualitative and based on three individual, open-narrative interviews. The interviewees were asked to recount challenging care situations where the patients refused care. Only one open-ended question was asked: ‘Please tell about your experiences of being in challenging situations when the patients refuse nursing care’. Additional questions were asked to encourage the interviewees to clarify and expand upon their accounts (e.g. When? What next? Who? How did you feel? and Can you please tell more about that?).15 The duration of each recorded interview was between 28 and 54 min. The interviews were conducted and transcribed verbatim by the first author. The topics in the narratives emerged as the interviewer listened to each 2
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interview, comparing them with field notes taken during each interview. Themes and direct quotations from the interviews are presented in the findings.
Data analysis The interviews were interpreted using a phenomenological hermeneutic method inspired by Ricoeur, where each interview was looked upon as a text.17–21 The findings were reflected on in light of a narrative theoretical departure point.19,20 Narrative ethics describe what life demands from us and how we choose to respond to this demand.11 Henceforth, narrative ethics is appropriate to describe the meaning of the RNs’ lived experience with ethical challenges related to reducing ICU patients’ refusals. The phenomenological hermeneutic analysis proceeds through dialectical movements between understanding and interpretation and a dialectic movement between the text as a whole and parts of the text. This analysis consists of three steps. The first step is a naı¨ve reading to grasp an overall impression of the text. In this study, naı¨ve reading was utilised to access the RNs’ lived experience with patients’ refusal of nursing care. Keeping an open mind, the transcribed interviews are reread several times. The analysis moves towards a phenomenological world, allowing the researchers to be touched by the narratives. The naı¨ve understanding of the text reveals the direction for the structural analysis.17–19,21 The second step is the Structural analysis. The text was divided into meaning units that were condensed to themes and subthemes. The purpose of this second step is to explain what the text says. Subthemes and themes are presented in section ‘Findings’. The third step, called the comprehensive understanding, is developed by reading the text as a whole, taking into account the authors’ pre-understanding, naı¨ve reading, structural analysis, relevant theory and previous research.17–19,21 The comprehensive understanding is presented in section ‘Discussion’.
Methodological considerations and study limitations The aim of this study is to describe the RNs’ experiences of ethical challenges when ICU patients refuse care and treatment. Narrative interviews (Mishler)15 were combined with a phenomenological hermeneutic method of interpretation to grasp the qualitative accounts of the RNs’ lifeworld.17–19,21 The interview technique with open questions found rich descriptions of the phenomena, although the length and depth of content varied between them. The number of participants in this study was small. According to Sandelowski,22 sample size in qualitative research should be large enough to achieve variation of experiences and small enough to permit deep analysis of the data. Sandelowski22 recommends to share how the researchers chose the numbers in each scientific research. The phenomenological hermeneutic method abstracted textual data about the RNs’ experiences at a theoretical level. In a phenomenological hermeneutic interpretation, the purpose is to reveal truth of being in the lifeworld. As a text is said never to have one single meaning, one can argue for and against the interpretation in any particular investigation, as Ricoeur21 says. What is presented here is only one out of several possible interpretations. The findings of this study cannot be generalised, but are credible if people with similar experiences can recognise the descriptions or the interpretations as their own.23 In this way, the findings can be transferred to similar situations.21
Ethical considerations Approval was given by the NSD and the head of the ICU nursing staff. The participants received oral and written information about the study and gave their informed consent. The RNs were informed that 3
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participation was voluntary, that information would be handled confidentially and that participants were free to withdraw from the project at any time. Recommended guidelines for research ethics were followed.24
Findings Three themes, five subthemes are presented in Table 1 and in the text below, including direct citations from the interviewees.
Challenges in deciding on behalf of the patient Sedating refusing patients to prevent them from interrupting treatment. RNs said the ICU patients are normally attached to various forms of life-supporting devices such as mechanical ventilators, dialysis machines, infusion lines and invasive catheters. The RNs were concerned that patients may try to remove the equipment, because the consequences would be critical. To prevent and avoid patients from harming themselves, the RNs said that the physicians prescribed a sedative PRN (pro re nata) drug to reduce the patients’ physical protest and refusals. RNs said they could give a PRN sedative to patients who refused to cooperate during physical care. If patients, that is, refused to change their position in bed or to take part in their personal hygiene, the RNs would administer a PRN to help them get through the daily programme in the ICU in a timely manner. RNs said that ICU patients are particularly vulnerable when they are weaned off continuous sedative infusions, and they slowly regain awareness of where they are. RNs found it challenging that most ICU patients do not understand why they have to go through certain procedures. RNs said that many of the patients develop delirium often with frightening hallucinations. Many of them are afraid and try to remove the technical equipment attached to their bodies. Others bite very hard on the oral tube connected to the mechanical ventilator threatening to compromise the airflow. RNs said they have been in situations where they had to force a pharyngeal tube into the mouth and throat of the patient to maintain free airways: It is never pleasant to be forceful like this. Even though I know it must be done to avoid a life threatening situation, it still feels somewhat like abuse. Still, in order to avoid further damage I normally give sedative medicines.
Sedating refusing patients to prevent them from interrupting the daily plan. RNs described how confused and fearful intensive care patients sometimes tried to escape or refuse treatment. These situations placed great demands on the RN’s time and resources, often causing a delay in the wards daily plans and activities. RNs said that the best way to help the patients to calm down was to sit down with them, holding their hand and calmly informing about the sequence of events and the current situation. This was described as an effective intervention. However, in order to keep abreast with the ward schedule, the RNs normally had no time to sit down with the patients: Table 1. An overview of subthemes and themes revealed by the structural analysis. Themes
Subthemes
Challenges in deciding on behalf of the patient Sedating refusing patients to prevent them from interrupting treatment Sedating refusing patients to prevent them from interrupting the daily plan Use of physical force to implement the treatment Challenges to persuade the patient RNs assume the role of a guardian Challenges in letting the patient decide RNs assume the role of the expert
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All routines are more time consuming when the patient participates and things like sitting down and holding hands is a thing we would really like to do, but there often is no time for it. As long as the patients are being sedated, we proceed with the nursing uninterrupted.
Use of physical force to implement the treatment. RNs gave an example of challenges with patients communicating that they did not want to do physical exercises with mobilisation out of bed. The RNs found it challenging to simply reject the patient’s wishes, especially when patients were considered completely wake and aware. RNs said that they had to use physical force sometimes. The RNs felt uncomfortable about forcing the patient physically. Unlike the patient, the RNs knew why treatment was important. But this did not make using physical force any easier. RNs experienced deep regrets and discomfort exercising physical force and said they felt somewhat violent and abusive. RNs gave examples of situations where the patients refused with rigid hips and joints, leaning their bodies in the opposite direction of where the RNs wanted them to move, and even pinched, pushed and lashed after RNs. RNs said they were uncomfortable with these incidents, expressing deep reservations regarding their decision to use force: The patient wanted us to let him be and it was incredibly uncomfortable, also because he expressed himself clearly and with anger. Even though I felt bad, I just told the patient what was going to happen. Then two more RNs and I took hold of the sheet and shovelled the patient upright.
Challenges to persuade the patient RNs assume the role of a guardian. RNs described challenges when patients required respiration support using a tight mask over nose and mouth strapped around the head. RNs said that refusing the mask would have severe consequences for the patient. The RNs said that to prevent a more critical situation, the team of RNs and physicians would have to proceed with the intervention to secure the airways in order to give access for mechanical ventilatory assistance. RNs said most people suffer different degrees of claustrophobia wearing these masks. In order to avoid the invasive intervention, RNs convince and persuade the patients to wear the mask. RNs found it challenging when lung transplant patients refused to be weaned off the respirator, because they lacked confidence in breathing without mechanical ventilation support through the night. RNs said that if the patient’s refusal was not being challenged, the patient would remain dependent on respiratory support. The RNs said they spent a lot of effort to persuade the patient to trust that the RNs will look after them. The RNs said they simply informed about what was going to happen, ignoring the patients’ verbal and physical responses: We, the RNs assume the role of a guardian acting on behalf of children who do not know what is best for them. The RNs make the patients do things they don’t want to do.
Challenges to let the patient decide RNs assume the role of the expert. The RNs shared an experience of a young lady with a chronic lung disease in critical care treatment with respirator support. For short breaks the patient was able to breathe spontaneously with no respirator support and could speak with the assistance of a speaking valve. RNs said it was challenging when the patient’s condition suddenly decreased and she insisted on not being put back on the respirator again. The patient wanted to die because the breathing was so heavy on her. The RNs knew that the patient’s lungs could not support her for longer than a short time without respirator, and the patient 5
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would suffer a life-threatening condition if she did not accept being attached to the respirator again shortly. RNs said they just wanted the patient to accept going back on the respirator immediately, to allow time for the RNs to explain and to include the physician in the situation before it escalated. In the meantime, the situation was urgent and the RNs needed to act fast to regain control: This left me at a loss as it was incredibly difficult, and I was not prepared for this sudden turn.
RNs told about when a patient expressed that he wanted the RNs to leave him alone and specifically not to mobilise him. RNs explained that the patient’s recovery was dependent on early mobilisation out of bed to prevent dangerous conditions following mucus stagnation and alarming complications following immobility such as bedsores, neuropathies and thrombosis: Did we have to be so determined on running this plan which had such a high cost to this patient when it did not work out anyway?
RNs questioned their cause of actions in these situations.
Discussion The study shows that RNs experience ethical challenges in their everyday work in the balance between situations of deciding on behalf of the patient, to persuade the patient and to let the patient decide. It is ethically challenging on the RNs to remain in situations where patients refuse to receive life-sustaining nursing and treatment. Patients are at risk of being hurt when they threaten to pull out the lines for continuous infusions or respirator tubes securing free airways. At the same time, the RNs said they know what is required to hinder severe consequences and death. To remain in situations where the patients do not want to receive this help was regarded as difficult because RNs were often uncertain whether they had passed on sufficient and balanced information. At the same time, the RNs said the patients held the right to decide whether they wanted to end their life or not.1,25 The RNs were aware of their enormous responsibility towards the patient and of the requirement to assess how to act to respect the patient when he or she did not comply with the intentions of the medical team.8,26 It is fair to assume that it is ethically difficult to accept the death of patients when professional help is available. Ethical challenges occur when decisions on the matter of life or death are urgently forced and at times in the absence of adequate information.11 It is also considered ethically difficult when the process of making decisions is prolonged, thereby leading to overtreatment, and that to end the treatment involving turning off the respirator touches the problem of euthanasia.27 The findings show that a patient in deep sleep is prone to be objectified, and the focus is then mainly on treatment, diagnosis and routines.28 Our study also described that a more wakeful ICU population is more demanding. This increases the daily workload, as more time is being spent calming and reassuring patients.29 The RNs experienced that taking the time to sit down with the patients and hold their hands had the most calming impact on them. However, due to lack of time this was often neglected and replaced with sedation. The RNs were pressed for time, and they were therefore afraid of forgetting crucial nursing tasks.30 This study as well as other studies shows that it is a common problem that time spent with patients is preoccupied by technical tasks, with less focus on the quality of interactions between RNs and patients.27 In the meeting between critical care patients and the RNs lies an ethical appeal to consistently confirm the other as a human being. The demand of helping the other may be neglected because obstacles may be placed on the everyday work with too much focus on survival, treatment and routines, and this may take precedence over the patient’s requests.10,27 6
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RNs’ integrity is about their closeness to their patients and the responsibility they have for them. People who are aware of the ethical dimensions in their own professional practice can never hide behind others and avoid their own share of the responsibility.31 RNs’ integrity is about themselves and how their thoughts and experiences enable them to respect and value the patients they encounter.30 RNs in ICU often face ethically challenging situations in their daily work.13 The findings show that the RNs physically stop the patients from pulling out the respirator tube. Even if this may be regarded as a correct choice of action, the RNs still feel uncomfortable. In these situations, the RNs feel their nursing is somewhat abusive. It is reasonable to assume that this may leave the nurses feeling vulnerable because it is ethically challenging to position oneself in the tension between following the patients will and to save their lives. The findings show that RNs faced challenges on acting ethically responsive. RNs referred to using physical force as a choice they were deeply disturbed by. However, they saw no other option of actions. It is reasonable to assume that the RNs’ choices are based on their understanding of the situation and the belief in their own capacities and competencies, to do a good job subsequently to regain nursing professional dignity.26 The RNs’ professional dignity is a major factor towards perceiving increased patient safety and to deliver quality of care.26 It is ethically challenging for the RNs when they have to make difficult choices and raise questions about what is good and not good. If RNs lack the opportunity to ask questions and the ability to explain their actions, they risk feelings of frustration, depression, lack of motivation and absenteeism, and patients can be affected by this loss of confidence in RNs’ own professional values.26 The RNs are acting responsibly, only by responding to the patients’ appeal. To understand the other is to perceive the other person’s expression of vulnerability and suffering.27 Human life always implies expressing oneself with the expectation of being met by others.31 Regardless of how varied the communications between people may be, it always involves the risk of one person daring to express their inner thoughts and emotions to the other in the hope of a response. This is the essence of communication and is the fundamental phenomenon of ethical life.31 Løgstrup and Fink31 say that in trust we expose ourselves to other people, and therefore, we are fundamentally vulnerable as human beings, and our existence demands of us that we protect the life of the person who has placed his or her trust in us. This ethical demand is referred to as unspoken; therefore, everyone of us is urged to ‘recognize the vulnerability of the person who places something of his own life into the hands of the other person’.31 Sørlie11 emphasises that such recognition requires sensitivity. Løgstrup and Fink31 refer to the life manifestations as trust, hope, mercy, charity, openness of speech, frankness and sympathy and state that these represent what is ethically good and the answer to the ethical demand and even constitute the foundation of ethics. Many interventions used within ICU environments may impair the patient’s ability to make decisions, that is, medication, illness, language barriers and emotional distress. The ability to carry responsibility is critical to perform a job of high quality. Encounters with increasingly vulnerable and dependent patients place a heavier responsibility on the RNs.32 Ethically demanding situations, that is, forcing or persuading ICU patients caused physical and emotional pain to the RNs. It is fair to believe that any ethical obligation towards another human being will be somewhat hurtful for the RNs. According to Henriksen and Vetlesen,32 embracing ethical responsibility should cause some discomfort or emotional pain. If the ethical responsibility does not cause some pain, this responsibility is not regarded as carried out.
Conclusion Parallel to the growing numbers of wake and aware critical care patients, RNs experience an increasing amount of ethically challenging situations that significantly elevate the RNs’ responsibility. According to Nerheim,33 the nursing ethics is challenged and exposed by the RNs’ own knowledge. Reflection is 7
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required to adjust the nursing care when the ideals of care are no longer in harmony with the reality of clinical practice. To ignore patients’ wishes is stressful to RNs as they feel this compromises their integrity as authentic human beings and their ability to perform nursing care in a holistic manner. The RNs highlighted that ignoring the patient’s right to decide for himself was causing stress among the RNs as well as the patients. This is an interesting ethical dilemma prompting further study of the phenomenon of ICU patients’ autonomy and the ethical questions it raises. Acknowledgements The authors are grateful to the participants in the study and to Timothy Pearson for revising the English language. Conflict of interest The authors declare that there is no conflict of interest. Funding This research received funding from The Norwegian Nurses’ Organisation (NSF). The author received time off, approximately 2-month study time from Division of Emergencies and Critical Care, Oslo University Hospital. References 1. Norge. Helsepersonelloven og pasient- og brukerrettighetsloven [Health Care Personel Act and Patients’ Rights Act]. med forskrifter: lov om helsepersonell m.v., vedtatt 2. juli 1999 nr. 64: lov om pasient- og brukerrettigheter, vedtatt 2. juli 1999 nr. 63, 2013. Oslo: Medlex norsk helseinformasjon. 2. Norsk Sykepleierforbund. Yrkesetiske retningslinjer for sykepleiere: ICNs etiske regler [The ICN code of ethics for nurses]. Oslo: Norsk sykepleierforbund, 2011. 3. Devabhakthuni S, Armahizer MJ, Dasta JF, et al. Analgosedation: a paradigm shift in intensive care unit sedation practice. Ann Pharmacother 2012; 46: 530–540. 4. Payen JF, Chanques G, Mantz J, et al. Current practices in sedation and analgesia for mechanically ventilated critically ill patients: a prospective multicenter patient-based study. Anesthesiology 2007; 106: 687–695; quiz 891–892. 5. Schweickert WD, Gehlbach BK, Pohlman AS, et al. Daily interruption of sedative infusions and complications of critical illness in mechanically ventilated patients. Crit Care Med 2004; 32: 1272–1276. 6. Kress JP, Gehlbach B, Lacy M, et al. The long-term psychological effects of daily sedative interruption on critically ill patients. Am J Respir Crit Care Med 2003; 168: 1457–1461. 7. Wøien H. The significance of a systematic approach in intensive care pain treatment and sedation: a descriptive and explorative study of nurses’ and physicians’ practice in the assessment of mechanically ventilated intensive care patients’ analgesic and sedative needs. Oslo: Unipub, 2013. 8. Nortvedt P, Kvarstein G and Jonland I. Sedation of patients in intensive care medicine and nursing: ethical issues. Nurs Ethics 2005; 12: 522–536. 9. Riker RR and Fraser GL. Altering intensive care sedation paradigms to improve patient outcomes. Anesthesiol Clin 2011; 29: 663–674. 10. Halvorsen K. The ethics of bedside priorities in intensive care: value choices and considerations: a qualitative study. Oslo: Unipub, 2009. 11. Sørlie V. Being in ethically difficult care situations: narrative interviews with registered nurses and physicians within internal medicine, oncology and paediatrics. Umea˚: Faculty of Medicine, Umea˚ University, 2001. 12. Dahlberg K. Suffering from care – the unnecessary suffering. Vard Nord Utveckl Forsk 2002; 22: 4–8. 8
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13. So¨derberg A. The practical wisdom of enrolled nurses, registered nurses and physicians in situations of ethical difficulty in intensive care. Umea˚: Department of Nursing, Umea˚ University, 1999. 14. So¨derberg A and Norberg A. Intensive care: situations of ethical difficulty. J Adv Nurs 1993; 18: 2008–2014. 15. Mishler EG. Research interviewing: context and narrative. Cambridge, MA: Harvard University Press, 1986. 16. Vitz PC. The use of stories in moral development: new psychological reasons for an old education method. Am Psychol 1990; 45: 709–720. 17. Ricoeur P. Time and narrative. Chicago, IL: The University of Chicago Press, 1984. 18. Ricoeur P and Thompson JB. Hermeneutics and the human sciences: essays on language, action and interpretation. Cambridge: Cambridge University Press, 1981. 19. Lindseth A and Norberg A. A phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci 2004; 18: 145–153. 20. Lindseth A, Marhaug V, Norberg A, et al. Registered nurses’ and physicians’ reflections on their narratives about ethically difficult care episodes. J Adv Nurs 1994; 20: 245–250. 21. Ricoeur P. Interpretation theory: discourse and the surplus of meaning. Fort Worth, TX: Texas Christian University Press, 1976. 22. Sandelowski M. Sample size in qualitative research. Res Nurs Health 1995; 18: 179–183. 23. Sandelowski M. The problem of rigor in qualitative research. ANS Adv Nurs Sci 1986; 8: 27–37. 24. Ruyter KW, Solbakk JH and Førde R. Medisinsk og helsefaglig etikk [Medical and health research ethics]. Oslo: Gyldendal Akademisk, 2007. 25. ECHR. Convention for the Protection of Human Rights and Fundamental Freedoms. European Convention on Human Rights. CETS no 194 ed. F-67075 Strasbourg cedex European Court of Human Rights 2010. 26. Sabatino L, Stievano A, Rocco G, et al. The dignity of the nursing profession: a meta-synthesis of qualitative research. Nurs Ethics 2014; 21: 659–672. 27. Sørlie V, Lindseth A, Forde R, et al. The meaning of being in ethically difficult care situations in pediatrics as narrated by male registered nurses. J Pecdiatr Nurs 2003; 8: 350–357. 28. Martinsen K. Øyet og kallet [The eye and the call]. Bergen: Fagbokforl, 2000. 29. Riker RR and Fraser GL. Altering intensive care sedation paradigms to improve patient outcomes. Crit Care Clin 2009; 25: 527–538. 30. Sørlie V, Kihlgren A and Kihlgren M. Meeting ethical challenges in acute nursing care as narrated by registered nurses. Nurs Ethics 2005; 12: 133–142. ˚ rhus: Klim, 2010. 31. Løgstrup KE and Fink H. Den etiske fordring [The ethical demand]. A 32. Henriksen J and Vetlesen A. Nærhet og distanse: grunnlag, verdier og etiske teorier i arbeid med mennesker [Close or distant: foundations, values and ethical theories in working with people]. Oslo: Gyldendal akademisk, 2006. 33. Nerheim H. Den etiske grunnerfaring: fra regelforsta˚else til fortrolighetskunnskap [The ethical baseline experience: from understanding the rules to having these rules fundamental to your view of the world]. Oslo: Universitetsforlaget, 1991.
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Ethical challenges when intensive care unit patients refuse nursing care: A narrative approach
Nursing Ethics 1–9 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014560931 nej.sagepub.com
Eva Martine Bull Oslo University Hospital, Norway; Lovisenberg Diaconal University College, Norway
Venke Sørlie Lovisenberg Diaconal University College, Norway
Abstract Background: Less sedated and more awake patients in the intensive care unit may cause ethical challenges. Research objectives: The purpose of this study is to describe ethical challenges registered nurses experience when patients refuse care and treatment. Research design: Narrative individual open interviews were conducted, and data were analysed using a phenomenological hermeneutic method developed for researching life experiences. Participants and research context: Three intensive care registered nurses from an intensive care unit at a university hospital in Norway were included. Ethical considerations: Norwegian Social Science Data Services approved the study. Permission was obtained from the intensive care unit leader. The participants’ informed and voluntary consent was obtained in writing. Findings: Registered nurses experienced ethical challenges in the balance between situations of deciding on behalf of the patient, persuading the patient and letting the patient decide. Ethical challenges were related to patients being harmful to themselves, not keeping up personal hygiene and care or hindering critical treatment. Discussion: It is made apparent how professional ethics may be threatened by more pragmatic arguments. In recent years, registered nurses are faced with increasing ethical challenges to do no harm and maintain dignity. Conclusion: Ethically challenging situations are emerging, due to new targets including conscious and aware critical care patients, leaving an altered responsibility on the registered nurses. Reflection is required to adjust the course when personal and professional ideals no longer are in harmony with the reality in the clinical practice. RNs must maintain a strong integrity as authentic human beings to provide holistic nursing care. Keywords Ethical challenges, intensive care unit nurse, narrative interviews, patients, phenomenological hermeneutic method, sedation
Corresponding author: Eva Martine Bull, Intensive Care Unit 1, Division of Emergencies and Critical Care, Oslo University Hospital, Rikshospitalet, Sognsvannsveien 20, 0372 Oslo, Norway. Email: [email protected]
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Introduction Registered nurses (RNs) meet critically ill patients who willingly accept medical help as well as patients who do not readily accept medical help. RNs have a duty to provide the highest level of healthcare, and the intensive care patient has the right to receive healthcare of the highest quality.1,2 Intensive care units (ICUs) are changing the clinical approach from a general deep level of sedation to target a light level of sedation in order to comply with the requirements of contemporary medical treatment.3–9 The shift towards generally awake critical care patients has created new ethical challenges for RNs.8,10 RNs are challenged by a lack of influence or courage to voice their opinion in addition to challenges concerning withdrawing and withholding treatment.10–13 RNs also narrate about challenges related to lifesaving at all costs, to remain in severe situations over time and being forced to make decisions concerning life and death.11,14 Some of the many challenges RNs face occur in situations where physicians and RNs believe they are better equipped to decide the optimal treatment for patients who refuse treatment either verbally or physically.10,13
Study purpose The purpose of this study is to describe ethical challenges RNs experience when patients refuse care and treatment.
Method Setting This study was conducted at a university hospital in Norway. All of the RNs in the ICUs had a 2-year postbachelor intensive care nurse speciality course. These RNs worked on a one-to-one basis with patients, assisted by a second RN.
Participants After the study was approved by Norwegian Social Science Data Services (NSD), the RN head staff at the ICU gave permission to conduct the study. All RNs with more than 5 years of experience were invited to participate, and the first three to respond were included.
Data collection According to Mishler,15 narratives provide the best data collection method to understand human experience. A way to understand moral choices is by studying carers’ narratives regarding their experiences from various care situations.16 A narrated story will reveal silent knowledge and add new insights.14 The study design is qualitative and based on three individual, open-narrative interviews. The interviewees were asked to recount challenging care situations where the patients refused care. Only one open-ended question was asked: ‘Please tell about your experiences of being in challenging situations when the patients refuse nursing care’. Additional questions were asked to encourage the interviewees to clarify and expand upon their accounts (e.g. When? What next? Who? How did you feel? and Can you please tell more about that?).15 The duration of each recorded interview was between 28 and 54 min. The interviews were conducted and transcribed verbatim by the first author. The topics in the narratives emerged as the interviewer listened to each 2
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interview, comparing them with field notes taken during each interview. Themes and direct quotations from the interviews are presented in the findings.
Data analysis The interviews were interpreted using a phenomenological hermeneutic method inspired by Ricoeur, where each interview was looked upon as a text.17–21 The findings were reflected on in light of a narrative theoretical departure point.19,20 Narrative ethics describe what life demands from us and how we choose to respond to this demand.11 Henceforth, narrative ethics is appropriate to describe the meaning of the RNs’ lived experience with ethical challenges related to reducing ICU patients’ refusals. The phenomenological hermeneutic analysis proceeds through dialectical movements between understanding and interpretation and a dialectic movement between the text as a whole and parts of the text. This analysis consists of three steps. The first step is a naı¨ve reading to grasp an overall impression of the text. In this study, naı¨ve reading was utilised to access the RNs’ lived experience with patients’ refusal of nursing care. Keeping an open mind, the transcribed interviews are reread several times. The analysis moves towards a phenomenological world, allowing the researchers to be touched by the narratives. The naı¨ve understanding of the text reveals the direction for the structural analysis.17–19,21 The second step is the Structural analysis. The text was divided into meaning units that were condensed to themes and subthemes. The purpose of this second step is to explain what the text says. Subthemes and themes are presented in section ‘Findings’. The third step, called the comprehensive understanding, is developed by reading the text as a whole, taking into account the authors’ pre-understanding, naı¨ve reading, structural analysis, relevant theory and previous research.17–19,21 The comprehensive understanding is presented in section ‘Discussion’.
Methodological considerations and study limitations The aim of this study is to describe the RNs’ experiences of ethical challenges when ICU patients refuse care and treatment. Narrative interviews (Mishler)15 were combined with a phenomenological hermeneutic method of interpretation to grasp the qualitative accounts of the RNs’ lifeworld.17–19,21 The interview technique with open questions found rich descriptions of the phenomena, although the length and depth of content varied between them. The number of participants in this study was small. According to Sandelowski,22 sample size in qualitative research should be large enough to achieve variation of experiences and small enough to permit deep analysis of the data. Sandelowski22 recommends to share how the researchers chose the numbers in each scientific research. The phenomenological hermeneutic method abstracted textual data about the RNs’ experiences at a theoretical level. In a phenomenological hermeneutic interpretation, the purpose is to reveal truth of being in the lifeworld. As a text is said never to have one single meaning, one can argue for and against the interpretation in any particular investigation, as Ricoeur21 says. What is presented here is only one out of several possible interpretations. The findings of this study cannot be generalised, but are credible if people with similar experiences can recognise the descriptions or the interpretations as their own.23 In this way, the findings can be transferred to similar situations.21
Ethical considerations Approval was given by the NSD and the head of the ICU nursing staff. The participants received oral and written information about the study and gave their informed consent. The RNs were informed that 3
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participation was voluntary, that information would be handled confidentially and that participants were free to withdraw from the project at any time. Recommended guidelines for research ethics were followed.24
Findings Three themes, five subthemes are presented in Table 1 and in the text below, including direct citations from the interviewees.
Challenges in deciding on behalf of the patient Sedating refusing patients to prevent them from interrupting treatment. RNs said the ICU patients are normally attached to various forms of life-supporting devices such as mechanical ventilators, dialysis machines, infusion lines and invasive catheters. The RNs were concerned that patients may try to remove the equipment, because the consequences would be critical. To prevent and avoid patients from harming themselves, the RNs said that the physicians prescribed a sedative PRN (pro re nata) drug to reduce the patients’ physical protest and refusals. RNs said they could give a PRN sedative to patients who refused to cooperate during physical care. If patients, that is, refused to change their position in bed or to take part in their personal hygiene, the RNs would administer a PRN to help them get through the daily programme in the ICU in a timely manner. RNs said that ICU patients are particularly vulnerable when they are weaned off continuous sedative infusions, and they slowly regain awareness of where they are. RNs found it challenging that most ICU patients do not understand why they have to go through certain procedures. RNs said that many of the patients develop delirium often with frightening hallucinations. Many of them are afraid and try to remove the technical equipment attached to their bodies. Others bite very hard on the oral tube connected to the mechanical ventilator threatening to compromise the airflow. RNs said they have been in situations where they had to force a pharyngeal tube into the mouth and throat of the patient to maintain free airways: It is never pleasant to be forceful like this. Even though I know it must be done to avoid a life threatening situation, it still feels somewhat like abuse. Still, in order to avoid further damage I normally give sedative medicines.
Sedating refusing patients to prevent them from interrupting the daily plan. RNs described how confused and fearful intensive care patients sometimes tried to escape or refuse treatment. These situations placed great demands on the RN’s time and resources, often causing a delay in the wards daily plans and activities. RNs said that the best way to help the patients to calm down was to sit down with them, holding their hand and calmly informing about the sequence of events and the current situation. This was described as an effective intervention. However, in order to keep abreast with the ward schedule, the RNs normally had no time to sit down with the patients: Table 1. An overview of subthemes and themes revealed by the structural analysis. Themes
Subthemes
Challenges in deciding on behalf of the patient Sedating refusing patients to prevent them from interrupting treatment Sedating refusing patients to prevent them from interrupting the daily plan Use of physical force to implement the treatment Challenges to persuade the patient RNs assume the role of a guardian Challenges in letting the patient decide RNs assume the role of the expert
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All routines are more time consuming when the patient participates and things like sitting down and holding hands is a thing we would really like to do, but there often is no time for it. As long as the patients are being sedated, we proceed with the nursing uninterrupted.
Use of physical force to implement the treatment. RNs gave an example of challenges with patients communicating that they did not want to do physical exercises with mobilisation out of bed. The RNs found it challenging to simply reject the patient’s wishes, especially when patients were considered completely wake and aware. RNs said that they had to use physical force sometimes. The RNs felt uncomfortable about forcing the patient physically. Unlike the patient, the RNs knew why treatment was important. But this did not make using physical force any easier. RNs experienced deep regrets and discomfort exercising physical force and said they felt somewhat violent and abusive. RNs gave examples of situations where the patients refused with rigid hips and joints, leaning their bodies in the opposite direction of where the RNs wanted them to move, and even pinched, pushed and lashed after RNs. RNs said they were uncomfortable with these incidents, expressing deep reservations regarding their decision to use force: The patient wanted us to let him be and it was incredibly uncomfortable, also because he expressed himself clearly and with anger. Even though I felt bad, I just told the patient what was going to happen. Then two more RNs and I took hold of the sheet and shovelled the patient upright.
Challenges to persuade the patient RNs assume the role of a guardian. RNs described challenges when patients required respiration support using a tight mask over nose and mouth strapped around the head. RNs said that refusing the mask would have severe consequences for the patient. The RNs said that to prevent a more critical situation, the team of RNs and physicians would have to proceed with the intervention to secure the airways in order to give access for mechanical ventilatory assistance. RNs said most people suffer different degrees of claustrophobia wearing these masks. In order to avoid the invasive intervention, RNs convince and persuade the patients to wear the mask. RNs found it challenging when lung transplant patients refused to be weaned off the respirator, because they lacked confidence in breathing without mechanical ventilation support through the night. RNs said that if the patient’s refusal was not being challenged, the patient would remain dependent on respiratory support. The RNs said they spent a lot of effort to persuade the patient to trust that the RNs will look after them. The RNs said they simply informed about what was going to happen, ignoring the patients’ verbal and physical responses: We, the RNs assume the role of a guardian acting on behalf of children who do not know what is best for them. The RNs make the patients do things they don’t want to do.
Challenges to let the patient decide RNs assume the role of the expert. The RNs shared an experience of a young lady with a chronic lung disease in critical care treatment with respirator support. For short breaks the patient was able to breathe spontaneously with no respirator support and could speak with the assistance of a speaking valve. RNs said it was challenging when the patient’s condition suddenly decreased and she insisted on not being put back on the respirator again. The patient wanted to die because the breathing was so heavy on her. The RNs knew that the patient’s lungs could not support her for longer than a short time without respirator, and the patient 5
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would suffer a life-threatening condition if she did not accept being attached to the respirator again shortly. RNs said they just wanted the patient to accept going back on the respirator immediately, to allow time for the RNs to explain and to include the physician in the situation before it escalated. In the meantime, the situation was urgent and the RNs needed to act fast to regain control: This left me at a loss as it was incredibly difficult, and I was not prepared for this sudden turn.
RNs told about when a patient expressed that he wanted the RNs to leave him alone and specifically not to mobilise him. RNs explained that the patient’s recovery was dependent on early mobilisation out of bed to prevent dangerous conditions following mucus stagnation and alarming complications following immobility such as bedsores, neuropathies and thrombosis: Did we have to be so determined on running this plan which had such a high cost to this patient when it did not work out anyway?
RNs questioned their cause of actions in these situations.
Discussion The study shows that RNs experience ethical challenges in their everyday work in the balance between situations of deciding on behalf of the patient, to persuade the patient and to let the patient decide. It is ethically challenging on the RNs to remain in situations where patients refuse to receive life-sustaining nursing and treatment. Patients are at risk of being hurt when they threaten to pull out the lines for continuous infusions or respirator tubes securing free airways. At the same time, the RNs said they know what is required to hinder severe consequences and death. To remain in situations where the patients do not want to receive this help was regarded as difficult because RNs were often uncertain whether they had passed on sufficient and balanced information. At the same time, the RNs said the patients held the right to decide whether they wanted to end their life or not.1,25 The RNs were aware of their enormous responsibility towards the patient and of the requirement to assess how to act to respect the patient when he or she did not comply with the intentions of the medical team.8,26 It is fair to assume that it is ethically difficult to accept the death of patients when professional help is available. Ethical challenges occur when decisions on the matter of life or death are urgently forced and at times in the absence of adequate information.11 It is also considered ethically difficult when the process of making decisions is prolonged, thereby leading to overtreatment, and that to end the treatment involving turning off the respirator touches the problem of euthanasia.27 The findings show that a patient in deep sleep is prone to be objectified, and the focus is then mainly on treatment, diagnosis and routines.28 Our study also described that a more wakeful ICU population is more demanding. This increases the daily workload, as more time is being spent calming and reassuring patients.29 The RNs experienced that taking the time to sit down with the patients and hold their hands had the most calming impact on them. However, due to lack of time this was often neglected and replaced with sedation. The RNs were pressed for time, and they were therefore afraid of forgetting crucial nursing tasks.30 This study as well as other studies shows that it is a common problem that time spent with patients is preoccupied by technical tasks, with less focus on the quality of interactions between RNs and patients.27 In the meeting between critical care patients and the RNs lies an ethical appeal to consistently confirm the other as a human being. The demand of helping the other may be neglected because obstacles may be placed on the everyday work with too much focus on survival, treatment and routines, and this may take precedence over the patient’s requests.10,27 6
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RNs’ integrity is about their closeness to their patients and the responsibility they have for them. People who are aware of the ethical dimensions in their own professional practice can never hide behind others and avoid their own share of the responsibility.31 RNs’ integrity is about themselves and how their thoughts and experiences enable them to respect and value the patients they encounter.30 RNs in ICU often face ethically challenging situations in their daily work.13 The findings show that the RNs physically stop the patients from pulling out the respirator tube. Even if this may be regarded as a correct choice of action, the RNs still feel uncomfortable. In these situations, the RNs feel their nursing is somewhat abusive. It is reasonable to assume that this may leave the nurses feeling vulnerable because it is ethically challenging to position oneself in the tension between following the patients will and to save their lives. The findings show that RNs faced challenges on acting ethically responsive. RNs referred to using physical force as a choice they were deeply disturbed by. However, they saw no other option of actions. It is reasonable to assume that the RNs’ choices are based on their understanding of the situation and the belief in their own capacities and competencies, to do a good job subsequently to regain nursing professional dignity.26 The RNs’ professional dignity is a major factor towards perceiving increased patient safety and to deliver quality of care.26 It is ethically challenging for the RNs when they have to make difficult choices and raise questions about what is good and not good. If RNs lack the opportunity to ask questions and the ability to explain their actions, they risk feelings of frustration, depression, lack of motivation and absenteeism, and patients can be affected by this loss of confidence in RNs’ own professional values.26 The RNs are acting responsibly, only by responding to the patients’ appeal. To understand the other is to perceive the other person’s expression of vulnerability and suffering.27 Human life always implies expressing oneself with the expectation of being met by others.31 Regardless of how varied the communications between people may be, it always involves the risk of one person daring to express their inner thoughts and emotions to the other in the hope of a response. This is the essence of communication and is the fundamental phenomenon of ethical life.31 Løgstrup and Fink31 say that in trust we expose ourselves to other people, and therefore, we are fundamentally vulnerable as human beings, and our existence demands of us that we protect the life of the person who has placed his or her trust in us. This ethical demand is referred to as unspoken; therefore, everyone of us is urged to ‘recognize the vulnerability of the person who places something of his own life into the hands of the other person’.31 Sørlie11 emphasises that such recognition requires sensitivity. Løgstrup and Fink31 refer to the life manifestations as trust, hope, mercy, charity, openness of speech, frankness and sympathy and state that these represent what is ethically good and the answer to the ethical demand and even constitute the foundation of ethics. Many interventions used within ICU environments may impair the patient’s ability to make decisions, that is, medication, illness, language barriers and emotional distress. The ability to carry responsibility is critical to perform a job of high quality. Encounters with increasingly vulnerable and dependent patients place a heavier responsibility on the RNs.32 Ethically demanding situations, that is, forcing or persuading ICU patients caused physical and emotional pain to the RNs. It is fair to believe that any ethical obligation towards another human being will be somewhat hurtful for the RNs. According to Henriksen and Vetlesen,32 embracing ethical responsibility should cause some discomfort or emotional pain. If the ethical responsibility does not cause some pain, this responsibility is not regarded as carried out.
Conclusion Parallel to the growing numbers of wake and aware critical care patients, RNs experience an increasing amount of ethically challenging situations that significantly elevate the RNs’ responsibility. According to Nerheim,33 the nursing ethics is challenged and exposed by the RNs’ own knowledge. Reflection is 7
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required to adjust the nursing care when the ideals of care are no longer in harmony with the reality of clinical practice. To ignore patients’ wishes is stressful to RNs as they feel this compromises their integrity as authentic human beings and their ability to perform nursing care in a holistic manner. The RNs highlighted that ignoring the patient’s right to decide for himself was causing stress among the RNs as well as the patients. This is an interesting ethical dilemma prompting further study of the phenomenon of ICU patients’ autonomy and the ethical questions it raises. Acknowledgements The authors are grateful to the participants in the study and to Timothy Pearson for revising the English language. Conflict of interest The authors declare that there is no conflict of interest. Funding This research received funding from The Norwegian Nurses’ Organisation (NSF). The author received time off, approximately 2-month study time from Division of Emergencies and Critical Care, Oslo University Hospital. References 1. Norge. Helsepersonelloven og pasient- og brukerrettighetsloven [Health Care Personel Act and Patients’ Rights Act]. med forskrifter: lov om helsepersonell m.v., vedtatt 2. juli 1999 nr. 64: lov om pasient- og brukerrettigheter, vedtatt 2. juli 1999 nr. 63, 2013. Oslo: Medlex norsk helseinformasjon. 2. Norsk Sykepleierforbund. Yrkesetiske retningslinjer for sykepleiere: ICNs etiske regler [The ICN code of ethics for nurses]. Oslo: Norsk sykepleierforbund, 2011. 3. Devabhakthuni S, Armahizer MJ, Dasta JF, et al. Analgosedation: a paradigm shift in intensive care unit sedation practice. Ann Pharmacother 2012; 46: 530–540. 4. Payen JF, Chanques G, Mantz J, et al. Current practices in sedation and analgesia for mechanically ventilated critically ill patients: a prospective multicenter patient-based study. Anesthesiology 2007; 106: 687–695; quiz 891–892. 5. Schweickert WD, Gehlbach BK, Pohlman AS, et al. Daily interruption of sedative infusions and complications of critical illness in mechanically ventilated patients. Crit Care Med 2004; 32: 1272–1276. 6. Kress JP, Gehlbach B, Lacy M, et al. The long-term psychological effects of daily sedative interruption on critically ill patients. Am J Respir Crit Care Med 2003; 168: 1457–1461. 7. Wøien H. The significance of a systematic approach in intensive care pain treatment and sedation: a descriptive and explorative study of nurses’ and physicians’ practice in the assessment of mechanically ventilated intensive care patients’ analgesic and sedative needs. Oslo: Unipub, 2013. 8. Nortvedt P, Kvarstein G and Jonland I. Sedation of patients in intensive care medicine and nursing: ethical issues. Nurs Ethics 2005; 12: 522–536. 9. Riker RR and Fraser GL. Altering intensive care sedation paradigms to improve patient outcomes. Anesthesiol Clin 2011; 29: 663–674. 10. Halvorsen K. The ethics of bedside priorities in intensive care: value choices and considerations: a qualitative study. Oslo: Unipub, 2009. 11. Sørlie V. Being in ethically difficult care situations: narrative interviews with registered nurses and physicians within internal medicine, oncology and paediatrics. Umea˚: Faculty of Medicine, Umea˚ University, 2001. 12. Dahlberg K. Suffering from care – the unnecessary suffering. Vard Nord Utveckl Forsk 2002; 22: 4–8. 8
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13. So¨derberg A. The practical wisdom of enrolled nurses, registered nurses and physicians in situations of ethical difficulty in intensive care. Umea˚: Department of Nursing, Umea˚ University, 1999. 14. So¨derberg A and Norberg A. Intensive care: situations of ethical difficulty. J Adv Nurs 1993; 18: 2008–2014. 15. Mishler EG. Research interviewing: context and narrative. Cambridge, MA: Harvard University Press, 1986. 16. Vitz PC. The use of stories in moral development: new psychological reasons for an old education method. Am Psychol 1990; 45: 709–720. 17. Ricoeur P. Time and narrative. Chicago, IL: The University of Chicago Press, 1984. 18. Ricoeur P and Thompson JB. Hermeneutics and the human sciences: essays on language, action and interpretation. Cambridge: Cambridge University Press, 1981. 19. Lindseth A and Norberg A. A phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci 2004; 18: 145–153. 20. Lindseth A, Marhaug V, Norberg A, et al. Registered nurses’ and physicians’ reflections on their narratives about ethically difficult care episodes. J Adv Nurs 1994; 20: 245–250. 21. Ricoeur P. Interpretation theory: discourse and the surplus of meaning. Fort Worth, TX: Texas Christian University Press, 1976. 22. Sandelowski M. Sample size in qualitative research. Res Nurs Health 1995; 18: 179–183. 23. Sandelowski M. The problem of rigor in qualitative research. ANS Adv Nurs Sci 1986; 8: 27–37. 24. Ruyter KW, Solbakk JH and Førde R. Medisinsk og helsefaglig etikk [Medical and health research ethics]. Oslo: Gyldendal Akademisk, 2007. 25. ECHR. Convention for the Protection of Human Rights and Fundamental Freedoms. European Convention on Human Rights. CETS no 194 ed. F-67075 Strasbourg cedex European Court of Human Rights 2010. 26. Sabatino L, Stievano A, Rocco G, et al. The dignity of the nursing profession: a meta-synthesis of qualitative research. Nurs Ethics 2014; 21: 659–672. 27. Sørlie V, Lindseth A, Forde R, et al. The meaning of being in ethically difficult care situations in pediatrics as narrated by male registered nurses. J Pecdiatr Nurs 2003; 8: 350–357. 28. Martinsen K. Øyet og kallet [The eye and the call]. Bergen: Fagbokforl, 2000. 29. Riker RR and Fraser GL. Altering intensive care sedation paradigms to improve patient outcomes. Crit Care Clin 2009; 25: 527–538. 30. Sørlie V, Kihlgren A and Kihlgren M. Meeting ethical challenges in acute nursing care as narrated by registered nurses. Nurs Ethics 2005; 12: 133–142. ˚ rhus: Klim, 2010. 31. Løgstrup KE and Fink H. Den etiske fordring [The ethical demand]. A 32. Henriksen J and Vetlesen A. Nærhet og distanse: grunnlag, verdier og etiske teorier i arbeid med mennesker [Close or distant: foundations, values and ethical theories in working with people]. Oslo: Gyldendal akademisk, 2006. 33. Nerheim H. Den etiske grunnerfaring: fra regelforsta˚else til fortrolighetskunnskap [The ethical baseline experience: from understanding the rules to having these rules fundamental to your view of the world]. Oslo: Universitetsforlaget, 1991.
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