Neurocognitive Disorders Dementia Alzheimer Disease

bs_bs_banner Bioethics ISSN 0269-9702 (print); 1467-8519 (online) Volume 26 Number 6 2012 pp 285–295 doi:10.1111/j.1467-8519.2010.01875.x ARTICLES ‘BECAUSE WE SEE THEM NAKED’ – NURSES’ EXPERIENCES IN CARING FOR HOSPITALIZED PATIENTS WITH DEMENTIA: CONSIDERING ARTIFICIAL NUTRITION OR HYDRATION (ANH) ELS BRYON, BERNADETTE DIERCKX DE CASTERLÉ AND CHRIS GASTMANS Keywords artificial nutrition and/or hydration, dementia, end-of-life, nursing, qualitative research, experiences ABSTRACT The aim of this study was to explore and describe how Flemish nurses experience their involvement in the care of hospitalized patients with dementia, particularly in relation to artificial nutrition or hydration (ANH). We interviewed 21 hospital nurses who were carefully selected from nine hospitals in different regions of Flanders. ‘Being touched by the vulnerability of the demented patient’ was the central experience of the nurses, having great impact on them professionally as well as personally. This feeling can be described as encompassing the various stages of the care process: the nurses’ initial meeting with the vulnerable patient; the intense decisionmaking process, during which the nurses experienced several intense emotions influenced by supporting or hindering contextual factors; and the final coping process, a time when nurses came to terms with this challenging experience. From our examination of this care process, it is obvious that nurses’ involvement in ANH decision-making processes that concern patients with dementia is a difficult and ethically sensitive experience. On the one hand, the feeling of ‘being touched’ can imply strength, as it demonstrates that nurses are willing to provide good care. On the other hand, the feeling of ‘being touched’ can also imply weakness, as it makes nurses vulnerable to moral distress stemming from contextual influences. Therefore, nurses have to be supported as they carry out this ethically sensitive assignment. Practical implications are given. INTRODUCTION Dementia is a progressive neurodegenerative and ultimately fatal disorder. Unless another fatal illness intervenes, patients with dementia gradually lose cognitive and physical functions.1 During later phases, these patients often develop serious eating problems,2 requiring 1 S.L. Mitchell. A 93-year-old Man with Advanced Dementia and Eating Problems. JAMA 2007; 298: 2527–2536. 2 T.E. Finucane, C. Christmas & K. Travis. Tube Feeding in Patients with Advanced Dementia: a Review of the Evidence. JAMA 1999; 282: 1365–1370; E.L. Sampson, B. Candy & L. Jones. Enteral Tube Feeding for Older People with Advanced Dementia. Cochrane Database Syst Rev 2009; 15: CD007209. clinicians to make a decision about artificial nutrition or hydration (ANH).3 ANH is a form of medical treatment in which nutrition or hydration is administered enterally or parenterally.4 ANH decision-making is clinically, emotionally, and ethically one of the most difficult dilemmas 3 G. Bosshard et al. Forgoing Treatment at the End of Life in 6 European Countries. Arch Intern Med 2005; 165: 401–407; H.M. Buiting. Forgoing Artificial Nutrition of Hydration in Patients Nearing Death in six European countries. J Pain Symptom Manage 2007; 34: 305–314; P.T. Van Wigcheren et al. Starting Artificial Nutrition and Hydration in Patients with Dementia in the Netherlands: Frequencies, Patient Characteristics and Decision-making Process. Aging Clin Exp Res 2007; 19: 26–33. 4 D. Casarett, J. Kapo & A. Caplan. Appropriate use of Artificial Nutrition and Hydration – Fundamental Principles and Recommendations. New Engl J Med 2005; 353: 2607–2612. Address for correspondence: Miss Els Bryon, Research Associate, Centre for Biomedical Ethics and Law, Centre for Health Services and Nursing Research, Catholic University of Leuven, Kapucijnenvoer 35/3, B-3000 Leuven, Belgium. Email: els.bryon@med.kuleuven.be Conflict of interest statement: No conflicts declared © 2011 Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA. 286 Els Bryon, Bernadette Dierckx de Casterlé and Chris Gastmans encountered in dementia care, as it deals with one of the most fundamental necessities of life.5 Providing nutrition and hydration has strong symbolic meaning for many families and healthcare staff.6 Feeding is often seen as a basic caregiving activity, whereas withholding food is associated with neglect and abandonment.7 Furthermore, the most recent clinical evidence fails to support the effectiveness of ANH in patients with dementia and warns of potential adverse consequences.8

The inability of patients with advanced dementia to communicate their treatment wishes and the lack of or inadequacy of advance directives make such decisions even more challenging.9 ANH decision-making involves making medical decisions, in which physicians have the final responsibility.10 According to Buiting et al.,11 physicians discuss forgoing ANH with the nursing staff in 22% (Italy) to 76% (Belgium) of cases. Nurses find decisions concerning food and fluid intake to be especially complicated, because feeding patients is an important basic task for which nurses feel responsible.12 A recent international review showed that nurses struggle in balancing ethical values – such as respect for autonomy, beneficence, sanctity of life, and dying with dignity – as they form their stance on whether ANH should be provided.13 Since the prevalence of patients with dementia is increasing remarkably worldwide,14 the delicate issue of being involved in ANH 5 H.M. Buiting et al. Neurocognitive Disorders Dementia Alzheimer Disease

Forgoing Artificial Nutrition of Hydration in Patients Nearing Death in six European countries. J Pain Symptom Manage 2007; 34: 305–314; Mitchell, op. cit. note 1; M.R. Gillick. Rethinking the Role of Tube Feeding in Patients with Advanced Dementia. N Engl J of Med 2000; 342: 206–210. 6 Gillick, op. cit. note 5; Casarett et al., op. cit. note 4. 7 R. McCann. Lack of Evidence about Tube Feeding – Food for Thought. JAMA 1999; 282: 1380–1381; M. Ersek. Artificial Nutrition and Hydration. JHPN 2003; 5: 221–229; P. van der Riet et al. Palliative Care Professionals’ Perceptions of Nutrition and Hydration at the End of Life. Int J of Palliat Nurs 2008; 14: 145–151. 8 Finucane et al., op. cit. note 2; Gillick, op. cit. note 5; Sampson et al, op. cit note 2. 9 P. Triplett et al. Content of Advance Directives for Individuals with Advanced Dementia. J Aging Health 2008; 20: 583–596; M.E. de Boer et al. Advance Directives in Dementia: Issues of Validity and Effectiveness. Int Psychogeriatr 2010; 22: 201–208. 10 H.R. Pasman et al. Forgoing Artificial Nutrition and Hydration in Nursing Home Patients with Dementia: Patients, Decision-making, and Participants. Alzheimer Dis Assoc Disord 2004; 18: 154–162; H.R. Pasman et al. Participants in the Decision-making on Artificial Nutrition and Hydration to Demented Nursing Home Patients: a qualitative study. J Aging Stud 2004; 18: 321–335. 11 Buiting et al., op. cit. note 5. 12 Pasman et al., op. cit. note 10. 13 E. Bryon, B. Dierckx de Casterlé & C. Gastmans. Nurses’ Attitudes towards Artificial Food or Fluid Administration in Patients with Dementia and in Terminally Ill Patients: a Review of the Literature. Neurocognitive Disorders Dementia Alzheimer Disease

JME 2008; 34: 431–436. 14 C.P. Ferri et al. Global Prevalence of Dementia: a Delphi Consensus Study. Lancet 2005; 366: 2112–2117; O. Mashta. Number of people in UK with Dementia will More than Double by 2050. BMJ 2007; 334: decision-making becomes extremely relevant for the nursing profession. The existing literature on nurses’ involvement in ANH decisions in severely ill patients (including patients with dementia) demonstrated that nurses experience several emotions such as guilt, frustration, sadness, and satisfaction.15 Whether nurses were pleased with the process depended on several contextual factors (e.g. ward culture, available support, doctor-nurse relationships) that could support or hinder their efforts to provide good care.16 Nurses who felt well supported coped better with emotional stress.17 Despite the ethical and emotional struggle they experienced, nurses felt they should play a role in ANH decision-making because they have close contact with the patients and their families. Nevertheless, they did not always feel that their contributions were valued.18 The available research allowed us to present only a rough sketch of how nurses perceive their involvement in ANH decisions.19 Several questions remain unanswered: What is the dominant process nurses experience? Of the contributions of others, which support and which hinder nurses? How do nurses cope with the emotions involved? Answering these questions will enable us to gain a more in-depth view, providing us with the insight that will help us to understand hospital nurses’ experiences better and to help sustain them in this ethically difficult care assignment. Hence, the aim of the present qualitative study was to explore and describe how nurses experience their involvement in ANH decision-making for hospitalized patients with dementia. METHODS Design and population To present a rich and in-depth view of nurses’ experiences, we chose a qualitative interview design inspired by 447; Alzheimer’s Association. 2009 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2009; 5: 234–270. 15 E. Bryon, C. Gastmans & B. Dierckx de Casterlé. Decision-making about Artificial Feeding in End-of-life-care: Literature Review. J Adv Nursing; 63: 2–14. 16 Bryon et al., op. cit. note 15. 17 V. Todd et al. Percutaneous Endoscopic Gastrostomy (PEG): the Role and Perspective of Nurses. J of Clin Nurs 2005; 14: 187–194. 18 E. Konishi, A.J. Davis, T. Aiba. The Ethics of Withdrawing Artificial Food and Fluid from Terminally Ill Patients: an End-of-life Dilemma for Japanese Nurses and Families. Nurs Ethics 2002; 9: 7–19; Todd et al., op. cit. note 17. 19 Only 2 articles identified in this review considered ANH decisionmaking in nursing-home patient with dementia. Pasman et al., 2004a, op. cit. note 10; Pasman et al., 2004b, op. cit. note 10. Though the majority of ANH decisions in patients with advanced dementia take place during hospitalization. S. Kuo et al. Neurocognitive Disorders Dementia Alzheimer Disease

Natural History of Feeding-tube use in Nursing Home Residents with Advanced Dementia. J Am Med Dir Assoc 2009; 10: 264–270; J.M. Teno et al. Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Cognitive Impairment. JAMA 2010; 303: 544–550. © 2011 Blackwell Publishing Ltd. ‘Because We See Them Naked’ 287 (EB, BDdC, CG), and discussions with the research team. It was refined throughout the research project. All interviews were conducted by the same researcher (EB), and were audiotaped and transcribed verbatim with the participants’ consent. Ethical considerations Figure 1. Hospital characteristics. the grounded theory approach.20 We contacted all hospitals in Flanders (n = 103) through their nursing directors. Ultimately, 22 hospitals agreed to participate. We asked them to complete a questionnaire about hospital characteristics and to select a contact person to oversee study communications. During the study, we purposefully selected nine hospitals out of the sample with the aim of gathering a wide variety of hospital characteristics (Figure 1). The contact person in each of the nine hospitals sought nurses who were (1) recently involved (ⱕ one year ago) in a care process surrounding ANH decisions in a patient with dementia; (2) Dutch-speaking; and (3) willing to participate in an interview. Nurses fulfilling these criteria received verbal and written information and were asked to complete a questionnaire about their personal characteristics and experiences with ANH decision-making processes. We received 74 completed questionnaires. Initially, on the basis of their questionnaire, we purposefully selected nurses to interview with the aim of obtaining a sample with diverse personal characteristics and experiences with the subject matter. Later – using theoretical sampling – we selected nurses more specifically out of the received questionnaires, based on heightened insights gained through interview analysis. As such data collection and analysis occurred simultaneously. Ultimately, we interviewed 21 hospital nurses (Figure 2). Our institute’s Ethics Committee approved the research protocol. All participants received verbal and written information; the informed consent procedure was respected. The anonymity of participants and institutions was carefully maintained, and all data were treated confidentially. Data analysis and trustworthiness Data collection and analysis occurred simultaneously and systematically. Neurocognitive Disorders Dementia Alzheimer Disease

A substantive reflection was formulated for each interview, in which important concepts related to the nurses’ experiences were grouped into categories and subcategories. Developing patterns were continuously verified against newly collected data, in a constant forwards-backwards wave fashion. The final step involved the formulation of the ‘story line’, which was re-verified against all interviews. Method triangulation was reached by going back to the 74 questionnaires we received after analysis of all interviews, to validate the concepts we developed in light of the nurses’ answers to these questionnaires. Furthermore, trustworthiness was ensured by meticulously maintaining an audit trail and by detailing the research process and the decisions made. To the greatest extent possible, we identified and bracketed previous knowledge and researchers’ assumptions. All authors (EB, BDdC, CG) read all the interviews and regularly discussed the findings. In addition, a multidisciplinary team of independent experts read the raw data and assessed the analysis we had already performed. Data management was supported by QRS NVivo 8. Data collection We performed 21 semi-structured interviews (April 2008– June 2009). We asked each nurse to relate his/her experiences when ANH was considered for his/her patient with dementia. The interview guide was based on a literature review,21 existing interview guides of the research team 20 B.G. Glaser & A.L. Strauss. 1999. The Discovery of Grounded Theory: Strategies for Qualitative Research. New Jersey: Aldine transaction; J. Corbin & A. Strauss. 2008. Basics of Qualitative Research. Techniques and Procedures for Developing Grounded Theory. California: Sage publications, Thousand Oaks. 21 Bryon et al., op. cit. note 15. © 2011 Blackwell Publishing Ltd. RESULTS The findings reported here come from a larger study concerning nurses and the care that surrounds ANH decisions in hospitalized patients with dementia.22 In the first part of this study, which examined nurses’ involvement during the ANH care process, we found that nurses are 22 E. Bryon, C. Gastmans & B. Dierckx de Casterlé. Involvement of Hospital Nurses in Care Decisions related to Administration of Artificial Nutrition or Hydration (ANH) in Patients with Dementia: a Qualitative Study. Int J Nurs Stud 2010; 47: 1105–1116. 288 Els Bryon, Bernadette Dierckx de Casterlé and Chris Gastmans Figure 2. Nurses’ personal characteristics. closely involved and fulfil diverse roles.23 Despite this diversity, their involvement was characterized by one guiding principle: ‘providing good care’ for demented patients.24 By searching for the ‘why’ behind nurses’ striving to give good care, we found that ‘being touched by the vulnerability of the patient’ was the central experience driving their willingness to strive for good care. This feeling can be described as encompassing the various stages of the ANH care process: the initial meeting with the vulnerable patient; the intense decision-making process; and the final coping process, which helps them reconcile this challenging experience. Initial confrontation with the vulnerability of the patient The feeling of ‘being touched’ arose from the first meeting between the nurses and the demented patient and increased in intensity as they got to know the patient better and as the patient’s condition declined. The feeling of ‘being touched’ originated with the patient’s vulnerable position. All interviewees noted the defencelessness, fragility, and dependency of these patients. They empathized strongly with the patients and found it to be emotionally difficult to see them in this condition. This encounter left a deep impression. . . . Neurocognitive Disorders Dementia Alzheimer Disease

I think, in the care that I give, participation and autonomy is very important because the patient’s living 23 24 Bryon et al., op. cit. note 22. Ibid. environment became so small. They have to give up so much of their independence. . . For me it is very difficult to deal with that. . . . (9) Through intense and long-term care contact, the nurses not only formed a picture of the patient’s medical condition but also became acquainted with the patient as a person, notwithstanding the advanced dementia. One of the nurses conveyed this striking event into words: ‘. . . we see our patients not only literally but also figuratively naked. . .’ (5). Nevertheless, it is precisely this vulnerable dependency that shaped a strong but often wordless appeal to nurses to provide dignified care. In addition, nurses were affected by persistent signals from patients – the refusal of food, defensive behaviour, and apathy. Nurses interpreted these as indications of weariness of life and meaninglessness. The interviews revealed that the nurses felt obliged, as professionals, to respond to this appeal; they balanced how best care can affect the patient and were willing to take responsibility as professionals to respond to this need. . . . Because we are the ones standing most closely to the patients. . . We wake them up in the morning, we take care of them In their behaviour, you feel their emotions, . . . . eight hours a day. . . then particular things become clear after a while. . . (10) The interviews indicated that the nurses not only felt addressed as professionals but also as people. They put themselves in the patient’s place and tried to imagine the patient’s experiences. Many interviewees expressed ‘being personally touched’ by applying the situation to © 2011 Blackwell Publishing Ltd. ‘Because We See Them Naked’ themselves or to their family, making the situation real and near. Indeed, empathy reduced the distance between their ‘professional self’ as a nurse and their ‘personal self’ as a person. Neurocognitive Disorders Dementia Alzheimer Disease

In addition, empathy enabled nurses to develop great concern about the well-being of the patient. Through personal involvement, each nurse experienced the ANH decision as an ethically sensitive decision. . . . For me that’s a question of life. . . that concerns not only this patient and that patient, later, it also concerns me, perhaps . . . Do I want to live that way?. . . What can I do in the future not to end up in such condition?. . . I would not want it. . . (10) Although all interviewees recognized the roles the physician and the family play in the decision-making, they also considered their own involvement as obvious, due to their intimate nurse-patient relationship. According to the interviewees’ perceptions, nurses are the ones who have most strongly heard the patient’s request. . . . I think it is my responsibility (as one of those who daily cares for that lady) that when she comes in a condition where she can’t express her will anymore. . . that you say: ‘I cannot let that happen!’ [ANH administration]. . . And that doesn’t come from one single emotional impulse of the patient. . . It is the lady’s whole situation that indicates: ‘That does not have to be anymore’. . . And that you express that for her, because she is not able [to do so] herself anymore. . . (19) G … Neurocognitive Disorders Dementia Alzheimer Disease