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Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study
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Clinical Nutrition xxx (2017) 1e7
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Clinical Nutrition journal homepage: http://www.elsevier.com/locate/clnu
Original article
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Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study
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Sean White a, *, Louise Brereton b, c a
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Home Enteral Feed Dietitian, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK School of Health Related Research, University of Sheffield, Sheffield, UK c College of Social Sciences, University of Lincoln, Lincoln, UK b
a r t i c l e i n f o
s u m m a r y
Article history: Received 20 December 2016 Accepted 30 April 2017
Background & aims: Although studies demonstrate the range of impacts of home enteral feeding (HEF) on patients' lives, a dearth of evidence focussing on the decision to have a gastrostomy placed exists. The importance of taking account of patient values (i.e. their unique preferences, concerns and expectations) when considering the consequences of clinical decisions is increasingly recognised. This study explores patient's views on the role of their values in their decision to have a gastrostomy. Methods: Using a qualitative approach and concurrent data collection and analysis, a convenience sample of 11 patients receiving HEF participated in one semi-structured interview in their own home. Participants were asked to i) consider the impact of HEF on their lives and ii) how this information could have been used in their decision making to have a gastrostomy. Interviews were transcribed verbatim and key themes were developed through inductive thematic analysis using NVivo 10 to manage the data. Results: Three key themes were identified: 1. Weighing up the benefits and concerns: a positive health outcome outweighed concerns about HEF. However, being asked to explicitly consider what individuals consider to be excessive information about the impact of HEF may increase anxiety; 2. Perceptions of choice: most patients felt they were either not given a choice or that they did not have a choice as there was not a viable alternative to HEF. 3. Expectations and regret: considering values may have helped manage expectations of HEF, although the decision to place a gastrostomy was usually not regretted. Conclusions: Taking account of individual values may enable better tailoring of decision-making. How patient values are clarified during decision making processes requires further study in relation to the varied indications for gastrostomy and the time available for decision making. © 2017 Published by Elsevier Ltd.
Keywords: Decision making Shared Values Home enteral feeding Gastrostomy
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1. Introduction Decision making could be better tailored to meet an individual's needs if it took account of their preferences, concerns and expectations. Current policy and guidance advocates involving patients in decisions about clinical interventions, including considering patient's personal values [1]. Shared decision making is advocated as the model that will best support patients in making an informed, preference-based decision [2]. A Cochrane review suggests decision aids (i.e. tools designed to facilitate patient's participation in clinical decision-making) improve knowledge and reduce decisional conflict [3]. The same review found low level evidence that decision aids improve the congruence of the choice made with the patient's * Corresponding author. Dietetic Department, Northern General Hospital, Herries Road, Sheffield S5 7AU, UK. E-mail address: [email protected] (S. White).
personal values. Additionally, there is growing evidence that incorporating patient's values during clinical decision-making may improve the quality of the decision made [4]. When an individual's clinical condition prevents them from taking adequate oral diet, they may be offered an enteral feeding tube to prevent or resolve malnutrition [5]. With training and support, clinically stable patients can manage the gastrostomy and administer the feed at home. Patients have described the social, practical and psychological impact that home enteral feeding (HEF) has on their lives [6,7]. The holistic consequences of HEF are additional to having to cope with the effects of their underlying clinical condition. Considering the wide ranging psychosocial impact of HEF [8], it may be argued that the patient can only make an informed decision once they understand these complex issues. The decision to have an enteral feeding tube placed is ethically
http://dx.doi.org/10.1016/j.clnu.2017.04.022 0261-5614/© 2017 Published by Elsevier Ltd.
Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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complex, and a mentally competent, informed patient has the right to autonomy when making this decision [9]. Qualitative studies indicate that patients undergoing gastrostomy placement experience inadequate information giving and a lack of choice in decision making [10]. However, to our knowledge no studies have been conducted focussing on the role of values in decision making to have a gastrostomy for long-term enteral feeding. For the purposes of this study, Straus and colleagues' definition of values was used: ‘the unique preferences, concerns and expectations each patient brings to a clinical encounter’ [11]. Integrating patients ‘preferences, concerns and expectations’ (i.e. values) into the decision to have a gastrostomy may play an important role in ensuring the choice made is congruent with the individual's personal values. This study explores patient views on the role of considering their values in the decision to have a gastrostomy. 2. Materials and methods Given the dearth of studies examining the role of values in decision-making, qualitative methods were used [12]. Ethical approval for this study was obtained from the local NHS Research Ethics committee. Two local NHS HEF Dietitians agreed to approach patients currently on HEF in one NHS Trust who met the inclusion criteria for this study. This provided some distance between the lead author, also a local HEF Dietitian, and the potential participants, complying with ethical requirements [13]. Adult patients who had been on HEF for a maximum of 12 months; had mental capacity and were able communicate orally in English during a 90-min interview were considered as potential participants for this study. Patients were given a participant information sheet about the study prior to providing written consent. Two patients approached by the NHS HEF Dietitians were not recruited; one was too ill and the other was excluded for ethical reasons as the patient was known to the lead author. Concurrent data collection and analysis was undertaken by the lead author. 11 semi-structured interviews were conducted with participants in their own homes. Identifying the participant's values relating to being on HEF, empowered them to consider how important this knowledge may have been during the decisionmaking process. The interview guide was developed following a review of the literature and discussions with colleagues. It focused on i) the experience of living on HEF; and ii) participant's views (including their views on the role of values) on the decision-making process. The interviews lasted between 45 and 75 min, were audiorecorded with consent, and were transcribed verbatim by the lead author.
literature, facilitated the development of interpretive themes and helped inform questioning in subsequent interviews. A total of 11 participants were interviewed between AprileJuly 2015. The participants characteristics are presented in Table 1. 4. Results Three key themes with associated sub-themes emerged from rigorous data analysis as presented in Fig. 1. 4.1. Theme 1. Weighing up the benefits and concerns All participants provided a personal account of how HEF had impacted on their lives, reporting both the benefits and concerns they associated with being on HEF. 4.1.1. Benefits A positive health outcome was the driving force in most participant's decision to have a gastrostomy. Tolerating treatment, preventing aspiration, maintaining nutritional intake, weight control and survival were amongst the positive outcomes mentioned. The perceived positive outcomes far out-weighed the potential negative consequences of being on HEF: ‘…it was a big decision for me, but when it comes to your life and living, there is only one answer isn't there? Do what is best for me, and if a PEG is put in the stomach to feed. You just do it like.’ (P2) Most participants had undergone radiotherapy for ENT (Ear Nose and Throat) cancer, and decided to have the gastrostomy placed thinking that it would maximise their chances of a successful outcome: ‘… you look at all that is on offer and you think if they are recommending all these things and you are hoping to get cured from this, then it'll be best to take everything that they are offering.’ (P6). Participants who had the gastrostomy placed for non-cancer diagnoses, referred to weight gain or preventing aspiration as important factors in their decision-making process: ‘I were told I would keep getting pneumonia and that I would end up in hospital. That was what I was told. So, I thought the alternative is this [the gastrostomy]. I couldn't have carried on like that.’ (P5).
Table 1 Participant characteristics. Participant
Sex
Age
Indication for HEF
Time tube in-situ (months)
P1
Female
46
1
P2 P3 P4 P5 P6 P7 P8
Male Female Female Male Male Male Male
58 57 69 80 53 69 71
P9 P10 P11
Male Male Female
74 54 76
Malnutrition secondary to pancreatitis ENT cancer ENT cancer ENT cancer Dysphagia with no diagnosis ENT cancer Stroke Dysphagia following spinal surgery ENT cancer ENT cancer ENT cancer
3. Data analysis Inductive thematic analysis was used to analyse the interview transcripts [14]. The aim was to explore and find eventual themes which could describe the role of values in the decision-making process. NVivo 10 (QSR International Version 10) computer software was used, with care taken not to lose the context in which the participant responses were made [15]. Following the initial coding, themes were developed using a process of constant comparison, applying the emerging codes and themes to the entire data set until data saturation was achieved [16]. An iterative process, moving backwards and forwards between the data, analysis and the
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Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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Fig. 1. Main themes and sub-themes describing patients views on decision making.
4.1.2. Concerns Participants gave a mixed response when asked how they may have reacted to being presented with concerns they identified during the decision-making process. Those participants who were informed about the possibility of pain post-gastrostomy placement, felt that this knowledge prepared them better for it. Others however, complained about the lack of information they received: ‘…I'd have still had it [gastrostomy placement] done, but I would have known about it [pain] and I could have prepared myself for it [pain], but like I say, I didn't get told nothing.’ (P1) Another participant reported being distressed when he was only told about the risks associated with having the gastrostomy placed on arrival in the endoscopy suite. He suggests that improved knowledge prior to tube placement could have prevented the significant anxiety he experienced, allowing time for any questions to be answered: ‘I had a consultation by someone …one or two hours before the operation and if she had said that [risk of mortality] to me I would have said oh, that's a bit worrying. What do you mean? And then she may have been able to allay my reservations.’ (P6) However, P6 goes onto to describe how knowing the risks may have made him more anxious during the time leading up to the gastrostomy placement: ‘On the other hand, I might have been petrified then going down. You just don't know what is right or wrong [to tell people].’ (P6)
Most participants were either awaiting gastrostomy removal or heralded some hope of future tube removal. As the expected time that the tube would remain in-situ was a major source of anxiety for many participants, this was felt an important issue to be addressed, in terms of managing their expectations: ‘Just someone sitting down and explaining things better to you and telling you what could happen and how long it is going to be stuck there. Nobody ever told me that.’ (P3) Nearly half of the participants would have liked to consider the impact of HEF during the decision-making process, even though they believed this would not have altered the decision outcome. P1 suggested they may have refused gastrostomy placement if they had been aware of the consequences, but she was not consistent in this view: ‘I would have liked for them to have sit down and explain how they were going to do it and what it were going to be like once I had it in my belly, the pain, what you were going to be like after I had it in.’ (P1) ‘If they had said I was going to be in agony after this, I probably wouldn't have had it done. I were literally in agony.’ (P1) P1 later described how she would still have had the gastrostomy placed: ‘I'd have it done (…) Yeah, but like I say I don't feel like I am benefiting from it really.’ (P1)
Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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Some participants reported had they considered their concerns related to being on HEF it may have prepared them for life on HEF, by better managing their expectations. However, several participants also thought that being asked to consider the potential consequences of being on HEF may have been too much information and even discourage patients from having the tube placed: ‘Should they say well it is going to restrict you in bed as well, it is going to restrict this, restrict that. (…) They don't give you all that information, because then at the end of the day, you would probably say well I am not having it then.’ (P2) Several participants described the multiple clinical issues they had to consider at the same time as considering the gastrostomy placement. Participants informed that they have ENT cancer described having to cope with the shock of the diagnosis; the treatment plan; the removal of teeth; in addition to the need for a gastrostomy. The focus for most participants remained on overcoming the primary indication for the gastrostomy. Some felt that being asked to fully consider the impact of HEF may have caused additional anxiety and were content with dealing with any adverse consequences as they occurred:
P5 who was experiencing repeated bouts of aspiration pneumonia initially refused gastrostomy placement, because he felt he could not give up oral diet. Following a second diagnosis of aspiration pneumonia, he agreed to have the gastrostomy placed: ‘the chap at the chest clinic at the [hospital] said you either persevere with it; you either just fade away; or you have the PEG. Three options that you want to make.’ (P5) 4.2.2. Felt no choice given As most patients had the gastrostomy placed in preparation for radiotherapy to the head and neck, the tube placement was perceived to be part of a treatment package that included radiotherapy and the removal of teeth rather than a decision in its own right: ‘Well no, they didn't discuss it with me, they just said that some patients have problems so I was having a PEG fitted.’ (P3) With the benefit of hindsight some patients accepted that they needed to have the tube placed:
‘I think it would have probably been too much to take in, because I would have thought well it doesn't affect me now. It may not affect me, so why worry about it.’ (P9)
‘Well I read a little booklet and it said that you had a choice. Well they didn't give me any choice. You know. But then again I am not going to say that that was wrong, because I did need it.’ (P4)
Participants emphasised their trust that the health professionals knew what was best for them, having treated many other patients with the same condition. They perceived that gastrostomy placement was not the priority for the treating health professionals; it was just something that had to be done as part of the treatment:
4.2.3. Felt had no choice due no viable alternative Some participants described feeling that there was no choice about gastrostomy placement because no viable alternative option exists. These participants perceived had they not had the gastrostomy placed, they would not have been able to take adequate oral diet, which may have had serious consequences in terms of their prognosis:
‘That [the gastrostomy] didn't seem to be the most important thing. The most important thing was they told us about the operation and everything and how it was possibly affect my speech. But the PEG didn't feature very highly while I was in hospital.’ (P11) However, one participant was dissatisfied with gastrostomy placement being considered part of a treatment package: ‘No, nobody told me, you know, how long it [gastrostomy tube placement] were going to be. And if you started asking they were just, you know, it is part of the treatment, go away.’ (P3)
‘I read all the leaflets on it and I thought mmm, you know, we really need to do this, you know. Where the tumour was in the back of my tongue as well, it is all where the swallowing function takes place anyway so it was a bit of a no brainer from that side’ (P6) Other patients felt that gastrostomy was the only way they would be able to self-manage and therefore leave hospital: ‘…. if I wanted to go home, I need to put that [gastrostomy] in so I could feed.’ (P8). 4.3. Theme 3. Expectations and decision regret
4.2. Theme 2. Perceptions of choice Participants had a varied perception of how much choice they had with regards the placement of the gastrostomy. 4.2.1. Felt had a choice to place gastrostomy A minority of patients felt they had a choice about gastrostomy placement. These patients described being presented with some information on gastrostomy placement and the reasons why the medical team felt it was necessary, but were also made aware that it was their decision to make: ‘she said this is what happens, and she gave us some paper work. You think about it. It is your decision. But this is what it will do for you and then read all this.’ (P2)
4.3.1. Expectations prior to gastrostomy placement Most participants ‘didn't know what to expect’ (P4) about what it would be like to live on HEF. From diagnosis with cancer, decisions regarding the treatment plan were being made very quickly and there was little time to think too far into the future. ‘It was all about just getting through it. I didn't think ahead. And if I had of …. thought ahead … I [would have] thought I would be better within three months. You know, I didn't realise it would have such a knock-on effect.’ (P11) Some participants felt that they would not have been able to imagine what it would be like to be on HEF; and if asked to consider the potential impact, they may have reacted by thinking that this wouldn't be the case for them‘:
Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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‘At the time I would have thought that it couldn't possibly affect me as bad as that. I might not have believed all that. I would have thought that is the worst that could happen, not that's definitely going to happen’ (P11) During decision making, participants gave little thought to the physical, practical, social or psychological concerns that they subsequently identified because of their experience of living on HEF. On reflection, most participants generally felt that being on HEF was less of a burden than they thought it would be. Despite changes to the way of life they were accustomed to, most participants described how they adapted to being on HEF by adopting a new routine. The ability to adapt was reflected in the way participants described getting used to the presence of the tube; the change to their daily routine and their inability to take oral diet. ‘I thought it was going to be worse after than what it is. I thought you would be able to feel it more and you can't. I just thought everything about it was going to be worse and it is not.’ (P2) Participants, who described their expectations being met, generally referred to how being on HEF had facilitated the achievement of a positive outcome, including preventing choking, maintaining nutritional intake and in many cases survival: ‘I think if I hadn't had this in, I don't think I would have been here. Because I wouldn't have been able to eat.’ (P10) Though most participants felt being on HEF had met their expectations with regards to tolerating the treatment administered and ultimately survival, they did not all experience the weight control or an increase in their energy levels that they thought they would: ‘I just don't know, all my expectations are gone, I just thought it were going to be right good. I would put weight on like that, but it's not, it's not true.’ (P1) Most participants reported frustration at the time it had taken for their dysphagia to resolve, and the subsequent effect it had on the length of time the gastrostomy had remained in-situ. ‘I didn't realise how long I would be stuck with it….I just thought it were going to be a short term thing while my treatment finished and everything would sort of revert back to normal.’ (P3) When making the decision P11 admitted being a ‘stick your head in the sand type of person’ but was surprised by the impact that HEF had on her home life, describing the effect on her social life as ‘massive’. She explained: ‘I wasn't prepared for that [the effect on her social life] as I wasn't prepared about what having the PEG entailed.’(P11)
4.3.2. Decision regret Most patients felt they did not regret having the tube placed and would make the same decision again. This is despite experiencing some of the negative impacts of being on HEF: ‘No. I don't regret it being placed, I just regret how it has changed my life. But not the PEG, no.’ (P11)
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Two participants suggested that they regretted having the tube placed (P1 and P3). They believed that the placement of a gastrostomy had not met their expectations. Notably, they were also the only participants who experienced significant distress relating to tube placement and the impact of HEF. P3 was distressed about length of time the gastrostomy had been in-situ, failing to come to terms with the tube's presence. Despite repeatedly stating she regretted the gastrostomy being placed she still perceived the tube to have ‘helped her survive’. P1 who was very distressed about the level of pain post gastrostomy placement, went on to say she would probably have the tube placed again, recognising that she would not have met her nutritional needs without it.
5. Discussion The findings of this qualitative study show that decision making about commencing HEF often occurred quickly at a time when patient concerns were dominated by a potentially life threatening diagnosis. Having experienced the holistic, psychosocial impact of HEF, most participants reflected that decision-making was dominated by the potential benefits of HEF and their preference to experience a positive health outcome rather than potential concerns about HEF. Indeed, most participants thought that they had no real choice about gastrostomy tube placement because this was a requirement of their treatment for ENT cancer. With hindsight, many participants were not concerned about not having a choice as they thought that there was no viable alternative. Irrespective of the amount of perceived choice and the impact on the decision outcome, information about the impact of HEF was important as it informed patient expectations. Although some participants reported that information about the effects of HEF enabled them to prepare better and manage their expectations about gastrostomy tube placement, others thought that such information would raise their anxiety levels. Information about the length of time that the feeding tube would be in-situ may help to manage expectations. Most participants reported that HEF was less burdensome than they imagined and they adapted to HEF by adopting a new routine. Some participants did not experience the weight gain or increase in energy levels that they would have expected after commencing HEF. There are many possible reasons for this including non-adherence with feeding plans, gastrointestinal intolerance, or malabsorption. Other participants reported pain and some were frustrated by the length of time their dysphagia took to resolve. Most participants did not regret their decision despite having some negative experiences of HEF. The two participants who expressed regret both experienced significant distress but both accepted that HEF had probably resulted in their survival. Not surprisingly, survival appears to reduce decision regret (i.e. the negative emotions that may arise if participants believed a more favourable outcome could arise from the decision to commence HEF). The current study's findings that the benefits of HEF outweighed concerns are consistent with the factors that patients with Motor Neurone Disease (MND) reported ‘triggered’ them to agree to have a gastrostomy placed, such as increased loss of weight or difficulties swallowing [7]. Most participants in the present study had ENT cancer, which involved making the decision in a short time frame with high probability of future tube removal, in contrast to patients with a long-term neurological condition, where the patients have more time to make the decision and the gastrostomy is likely to remain in place for the rest of their lives.
Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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In line with previous research by Kwong and colleagues [17], participants in the current study with ENT cancer viewed the gastrostomy as a necessity, referring to preventing choking, weight maintenance and survival as important issues. Participants often perceived the placement of a gastrostomy as part of the treatment plan which is consistent with previous research where patients displayed a willingness to accept a gastrostomy to maintain nutrition and hydration when facing complex treatment decisions [18]. Additionally, participants in the current study perceived that being presented with too much information about the realities of living on HEF may have increased anxiety and may even have resulted in a decision to refuse gastrostomy placement; an intervention the majority went on to view as a ‘life-line’. When multiple complex decisions are being made in a short time frame including that relating to gastrostomy placement, participants appear to favour a ‘fast and frugal heuristic’ approach to decision making, making the judgement that the ‘doctor knows best’ and focussing on the dominant cue of survival [19]. A previous qualitative study, concluded that when the decision was made quickly, the advice of the health professionals was followed without much hesitation [20]. This current study failed to recruit any patients with a chronic condition. The role of considering patients values in the decision to have a gastrostomy placed when the patient has more time to reflect on the future impact of home enteral feeding on their lives, should be the focus of future research. There is growing support in the literature for patient's ‘values’ to be clarified during decision making when there is a preference based decision to be made, particularly where there are two options that may have comparable outcomes [4]. Most participants in this study supported the view that there was not a viable alternative option to having a gastrostomy placed, which is consistent with previous qualitative research in this field [21]. However, informed patients with mental capacity have the right to refuse gastrostomy placement, even if the medical team feel it is in their best interests [9,22]. Previous qualitative, interview studies have described how patients desire more information about the process of feeding and effect on prognosis [23]. Patients with MND who are more active in seeking information, are more likely to refuse the placement of a gastrostomy possibly because of an increased awareness of the potential impact of the intervention [24]. However, some participants in this study reported that being well informed may have increased their anxiety, and struggled to recognise the ability to adapt to life on the HEF. Despite there being a potential to increase patient anxiety, exploring patient's perceptions of the impact of HEF during decision making may infer benefit in terms of better managing patient's expectations. Some participants in the current study would have liked more information prior to decision-making, suggesting that they value a greater understanding of what HEF would entail and being prepared for potential adverse consequences. Participants described how they did not expect the gastrostomy to remain in-situ for as long as it had; a finding consistent with Van Rosendaal and colleague's reports that patients expect more positive outcomes of their clinical course, than described by their physicians [23]. Therefore, clarifying patient ‘values’ during decision-making to have a gastrostomy placed may prepare patients better for life on HEF. This suggestion is supported by Snyder and colleagues' findings that informing surrogate decision makers of the advantages and disadvantages of commencing enteral feeding, improved knowledge and resulted in more realistic expectations of clinical benefit [25]. However, caution should be taken to ensure the potential benefits of a more rigorous decision making process do not result in an increase in patient's anxiety, particularly if it is unlikely to change the decision outcome, such as
when a gastrostomy tube is placed prior to radiotherapy for ENT cancer. Participants' perceptions about the level of choice they had in the decision to have a gastrostomy placed, varied between individuals. In line with findings from Greenaway et al.'s qualitative study, most perceived that they were either not given a choice or had no choice, believing there was not a viable alternative [21]. There may not have been a viable alternative to having a gastrostomy placed in order to experience a positive health outcome for many of the participants. However, there is a viable alternative to gastrostomy placement by way of continuing with naso-gastric feeding or with regards to patients diagnosed with ENT cancer, only placing a tube once it is required rather than prophylactically, which is the focus of an on-going NIHR research programme [26,27]. With the length of time a gastrostomy is in-situ for being an important issue for patients, an argument may be made for presenting them with the choice and potential consequences of gastrostomy, naso-gastric tube or no tube. Information-giving needs to include the associated evidence to ensure a decision is made in line with their own values. Most patients did not express dissatisfaction about having no real choice during the decision to have a gastrostomy placed. Only two patients reported a negative experience of life on HEF and were upset by the lack of choice offered. In the U.K., policy and guidelines exist to promote shared decision making and achieve informed consent [28]. However, some patients wish that the medical team will make the decisions in a more paternalistic manner, holding the view that professionals know best. Ende and colleagues' instrument for measuring patient preferences for autonomy found that patients were less inclined to make decisions as the severity of their condition increased [29]. This contrasts with patients with longterm neurological conditions who can make the decision over a period of time, ‘taking control’ of the decision, where they don't have control of their progressive disease [24]. Decision support processes should consider patient's preferences with regards to their involvement in the decision to prevent an increase in anxiety that participants describe in this study. This research is based on the perceptions of patients already on HEF and are not representative of how a patient with no prior knowledge of HEF would have thought or acted during the decision-making process. Future research should explore the temporal changes in patients' perceptions on the decision-making process at intervals from pre-placement through to long-term post placement. Most patients in this study had ENT cancer where future tube removal was likely. Facilitating the inclusion of patients with long-term neurological conditions with purposive sampling may have produced a greater range of views to those presented in this study. Caution should be used in the implementation of these findings to all patients making the decision to have a gastrostomy placed. The findings do provide some insight into patient preferences, concerns and expectations, or their values, in decision making about gastrostomy placement. Patients may have a varied need for their values to be clarified during decision making to have an enteral feeding tube placed. Therefore, the decision-making approach may need to be modified based on patient preferences for involvement and the context in which the decision is being made. The insights gained from this study will further inform health professionals involved in providing decision support for patients considering the placement of a gastrostomy.
Conflict of interest statement All authors confirm there were no conflicts of interest.
Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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Statement of authorship SW is the PI and independently designed, conducted and wrote up the study with the support of LB as his academic supervisor. LB critically reviewed the article. Funding sources
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This study was formed the dissertation for the lead authors MSc in Clinical Research, that was funded by the NIHR. No additional funding was required for this project. Acknowledgements This study was the result of the dissertation for a MSc in Clinical Research funded by National Institute for Health Research (NIHR). References [1] General Medical Council (2008). Consent: patients and doctors making decisions together. Gibbs G (2011). Analysing qualitative data. SAGE publications. [2] Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: a model for clinical practice. J General Intern Med 2012;27(10):1361e7. gare F, Col N, Bennett C, Barry M, Eden K, et al. Decision aids for [3] Stacey D, Le people facing health treatment or screening decisions. Cochrane Database Syst Rev 2014;1:CD001431. [4] Fagerlin A, Pignone M, Abhyankar P, Col N, Feldman-Stewart D, Gavaruzzi T, et al. Clarifying values: an updated review. BMC Med Inf Decis Mak 2013;13(Suppl. 2):S8. [5] Stroud M, Duncan H, Nightingale J. Guidelines for enteral feeding in adult hospital patients. Gut 2003;52(Suppl. VII). vii1evii12. [6] Brotherton A, Abbott J, Aggett P. The impact of percutaneous endoscopic gastrostomy feeding upon daily life in adults. J Hum Nutr Dietetics 2006;19(5):355e67. [7] Stavroulakis T, Baird W, Baxter S, Walsh T, Shaw P, McDermott C. Factors influencing decision-making in relation to timing of gastrostomy insertion in patients with motor neurone disease. BMJ Support Palliat Care 2013;4(1): 57e63. [8] Westaby D, Young A, O'Toole P, Smith G, Sanders D. The provision of a percutaneously placed enteral tube feeding service. Gut 2010;59:1592e605. [9] DeLegge M, McClave S, DiSario J, Baskin W, Brown R, Fang J, et al. Ethical and medicolegal aspects of PEG-tube placement and provision of artificial nutritional therapy. Gastrointest Endosc 2005;62(6):952e9. [10] Stathopoulos P. Percutaneous endoscopic gastrostomy: patients' outcomes, adequacy and quality of information given to decision-makers and procedure acceptance. Ann Gastroenterol 2011;24(1):29e34.
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[11] Straus S, Sackett D. Evidence-based medicine: how to practice and teach EBM. 3rd ed. Elsevier Churchill Livingstone; 2005. [12] Lincoln Y, Lynham S, Guba E. Chapter: paradigmatic controversies, contradictions and emerging confluences, revisited in Bryman (2011). The Sage handbook of qualitative research. 4th ed. SAGE Publications; 2001. [13] Good clinical practice (GCP) guidelines (2014). International conference on Harmonisation. Accessed from: http://ichgcp.net/. [14] Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77e101. [15] Spencer L, Ritchie J, Ormstone R, O'Connor W, Barnard M. In: Ritchie J, Lewis J, Nicholls C, Ormston R, editors. Qualitative research practice. 2nd ed. London: SAGE Publications; 2014. p. 269e93. [16] Guest G, MacQueen K, Namey E. Applied thematic analysis. Thousand Oaks: Sage; 2011. [17] Kwong J, Stokes E, Posluns E, Fitch M, McAndrew A, Vandenbussche K. The experiences of patients with advanced head and neck cancer with a percutaneous endoscopic gastrostomy tube: a qualitative descriptive study. Nutr Clin Pract 2014;29(4):526e33. [18] Callahan C, Haag K, Buchanan N, Nisi R. Decision-making for percutaneous endoscopic gastrostomy among older adults in a community setting. J Am Geriatric Soc 1999;47(9):1105e9. [19] Marewski J, Gigerenzer G. Heuristic decision making in medicine. Dialogues Clin Neurosci 2012;14(1):77e89. [20] Liley AJ, Manthorpe J. The impact of home enteral tube feeding in everyday life: a qualitative study. Health Soc Care Community 2003;11(5):415e22. [21] Brotherton A, Abbott J. Clinical decision making and the provision of information in PEG feeding: an exploration of patients and their carers' perceptions. J Hum Nutr Dietetics 2009;22(4):302e9. [22] Mental Capacity Act (MCA). 2005. Accessed at: http://www.legislation.gov.uk/ ukpga/2005/9/pdfs/ukpga_20050009_en.pdf. [23] Van Rosendaal G, Verhoef M, Kinsella. How are decisions made about the use of percutaneous endoscopic gastrostomy for long-term nutritional support? Am J Gastroenterol 1999;94(11):3225e8. [24] Greenaway L, Martin N, Lawrence V, Janssen A, Al-Chalabi A, Leigh P, et al. Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients' perspectives. J Neurol 2015;262(4): 1002e13. [25] Snyder E, Caprio A, Wessell K, Lin F, Hanson L. Impact of a decision aid on surrogate decision-makers' perceptions of feeding options for patients with dementia. J Am Med Dir Assoc 2013;14(2):114e8. [26] Paleri V, Barclay S, Donnelly R, Cowper T, Franks J, Patterson J, et al. A feasibility randomised controlled trial of pre-treatment gastrostomy tube versus oral feeding plus as-needed nasogastric tube feeding in patients undergoing chemoradiation for head and neck cancer. Protocol published on NIHR website: http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0009/ 94644/PRO-12-35-32.pdf. 2014 [Accessed 27 August 2015]. [27] Bradley P, Brown T, Paleri V. Gastrostomy in head and neck cancer: current literature, controversies and research. Curr Opin Otolaryngol Head Neck Surg 2015;23(2):162e70. [28] Foot C, Gilburt H, Dunn P, Jabbal J, Seale B, Goodrich J, et al. People in control of their own health care. The state of involvement. Kings Fund; 2014. [29] Ende J, Kazis L, Ash A, Moskowitz M. Measuring patients' desire for autonomy. J Gen Intern Med 1989;4(1):23e30.
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Contents lists available at ScienceDirect
Clinical Nutrition journal homepage: http://www.elsevier.com/locate/clnu
Original article
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Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study
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Sean White a, *, Louise Brereton b, c a
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Home Enteral Feed Dietitian, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK School of Health Related Research, University of Sheffield, Sheffield, UK c College of Social Sciences, University of Lincoln, Lincoln, UK b
a r t i c l e i n f o
s u m m a r y
Article history: Received 20 December 2016 Accepted 30 April 2017
Background & aims: Although studies demonstrate the range of impacts of home enteral feeding (HEF) on patients' lives, a dearth of evidence focussing on the decision to have a gastrostomy placed exists. The importance of taking account of patient values (i.e. their unique preferences, concerns and expectations) when considering the consequences of clinical decisions is increasingly recognised. This study explores patient's views on the role of their values in their decision to have a gastrostomy. Methods: Using a qualitative approach and concurrent data collection and analysis, a convenience sample of 11 patients receiving HEF participated in one semi-structured interview in their own home. Participants were asked to i) consider the impact of HEF on their lives and ii) how this information could have been used in their decision making to have a gastrostomy. Interviews were transcribed verbatim and key themes were developed through inductive thematic analysis using NVivo 10 to manage the data. Results: Three key themes were identified: 1. Weighing up the benefits and concerns: a positive health outcome outweighed concerns about HEF. However, being asked to explicitly consider what individuals consider to be excessive information about the impact of HEF may increase anxiety; 2. Perceptions of choice: most patients felt they were either not given a choice or that they did not have a choice as there was not a viable alternative to HEF. 3. Expectations and regret: considering values may have helped manage expectations of HEF, although the decision to place a gastrostomy was usually not regretted. Conclusions: Taking account of individual values may enable better tailoring of decision-making. How patient values are clarified during decision making processes requires further study in relation to the varied indications for gastrostomy and the time available for decision making. © 2017 Published by Elsevier Ltd.
Keywords: Decision making Shared Values Home enteral feeding Gastrostomy
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1. Introduction Decision making could be better tailored to meet an individual's needs if it took account of their preferences, concerns and expectations. Current policy and guidance advocates involving patients in decisions about clinical interventions, including considering patient's personal values [1]. Shared decision making is advocated as the model that will best support patients in making an informed, preference-based decision [2]. A Cochrane review suggests decision aids (i.e. tools designed to facilitate patient's participation in clinical decision-making) improve knowledge and reduce decisional conflict [3]. The same review found low level evidence that decision aids improve the congruence of the choice made with the patient's * Corresponding author. Dietetic Department, Northern General Hospital, Herries Road, Sheffield S5 7AU, UK. E-mail address: [email protected] (S. White).
personal values. Additionally, there is growing evidence that incorporating patient's values during clinical decision-making may improve the quality of the decision made [4]. When an individual's clinical condition prevents them from taking adequate oral diet, they may be offered an enteral feeding tube to prevent or resolve malnutrition [5]. With training and support, clinically stable patients can manage the gastrostomy and administer the feed at home. Patients have described the social, practical and psychological impact that home enteral feeding (HEF) has on their lives [6,7]. The holistic consequences of HEF are additional to having to cope with the effects of their underlying clinical condition. Considering the wide ranging psychosocial impact of HEF [8], it may be argued that the patient can only make an informed decision once they understand these complex issues. The decision to have an enteral feeding tube placed is ethically
http://dx.doi.org/10.1016/j.clnu.2017.04.022 0261-5614/© 2017 Published by Elsevier Ltd.
Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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complex, and a mentally competent, informed patient has the right to autonomy when making this decision [9]. Qualitative studies indicate that patients undergoing gastrostomy placement experience inadequate information giving and a lack of choice in decision making [10]. However, to our knowledge no studies have been conducted focussing on the role of values in decision making to have a gastrostomy for long-term enteral feeding. For the purposes of this study, Straus and colleagues' definition of values was used: ‘the unique preferences, concerns and expectations each patient brings to a clinical encounter’ [11]. Integrating patients ‘preferences, concerns and expectations’ (i.e. values) into the decision to have a gastrostomy may play an important role in ensuring the choice made is congruent with the individual's personal values. This study explores patient views on the role of considering their values in the decision to have a gastrostomy. 2. Materials and methods Given the dearth of studies examining the role of values in decision-making, qualitative methods were used [12]. Ethical approval for this study was obtained from the local NHS Research Ethics committee. Two local NHS HEF Dietitians agreed to approach patients currently on HEF in one NHS Trust who met the inclusion criteria for this study. This provided some distance between the lead author, also a local HEF Dietitian, and the potential participants, complying with ethical requirements [13]. Adult patients who had been on HEF for a maximum of 12 months; had mental capacity and were able communicate orally in English during a 90-min interview were considered as potential participants for this study. Patients were given a participant information sheet about the study prior to providing written consent. Two patients approached by the NHS HEF Dietitians were not recruited; one was too ill and the other was excluded for ethical reasons as the patient was known to the lead author. Concurrent data collection and analysis was undertaken by the lead author. 11 semi-structured interviews were conducted with participants in their own homes. Identifying the participant's values relating to being on HEF, empowered them to consider how important this knowledge may have been during the decisionmaking process. The interview guide was developed following a review of the literature and discussions with colleagues. It focused on i) the experience of living on HEF; and ii) participant's views (including their views on the role of values) on the decision-making process. The interviews lasted between 45 and 75 min, were audiorecorded with consent, and were transcribed verbatim by the lead author.
literature, facilitated the development of interpretive themes and helped inform questioning in subsequent interviews. A total of 11 participants were interviewed between AprileJuly 2015. The participants characteristics are presented in Table 1. 4. Results Three key themes with associated sub-themes emerged from rigorous data analysis as presented in Fig. 1. 4.1. Theme 1. Weighing up the benefits and concerns All participants provided a personal account of how HEF had impacted on their lives, reporting both the benefits and concerns they associated with being on HEF. 4.1.1. Benefits A positive health outcome was the driving force in most participant's decision to have a gastrostomy. Tolerating treatment, preventing aspiration, maintaining nutritional intake, weight control and survival were amongst the positive outcomes mentioned. The perceived positive outcomes far out-weighed the potential negative consequences of being on HEF: ‘…it was a big decision for me, but when it comes to your life and living, there is only one answer isn't there? Do what is best for me, and if a PEG is put in the stomach to feed. You just do it like.’ (P2) Most participants had undergone radiotherapy for ENT (Ear Nose and Throat) cancer, and decided to have the gastrostomy placed thinking that it would maximise their chances of a successful outcome: ‘… you look at all that is on offer and you think if they are recommending all these things and you are hoping to get cured from this, then it'll be best to take everything that they are offering.’ (P6). Participants who had the gastrostomy placed for non-cancer diagnoses, referred to weight gain or preventing aspiration as important factors in their decision-making process: ‘I were told I would keep getting pneumonia and that I would end up in hospital. That was what I was told. So, I thought the alternative is this [the gastrostomy]. I couldn't have carried on like that.’ (P5).
Table 1 Participant characteristics. Participant
Sex
Age
Indication for HEF
Time tube in-situ (months)
P1
Female
46
1
P2 P3 P4 P5 P6 P7 P8
Male Female Female Male Male Male Male
58 57 69 80 53 69 71
P9 P10 P11
Male Male Female
74 54 76
Malnutrition secondary to pancreatitis ENT cancer ENT cancer ENT cancer Dysphagia with no diagnosis ENT cancer Stroke Dysphagia following spinal surgery ENT cancer ENT cancer ENT cancer
3. Data analysis Inductive thematic analysis was used to analyse the interview transcripts [14]. The aim was to explore and find eventual themes which could describe the role of values in the decision-making process. NVivo 10 (QSR International Version 10) computer software was used, with care taken not to lose the context in which the participant responses were made [15]. Following the initial coding, themes were developed using a process of constant comparison, applying the emerging codes and themes to the entire data set until data saturation was achieved [16]. An iterative process, moving backwards and forwards between the data, analysis and the
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Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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Fig. 1. Main themes and sub-themes describing patients views on decision making.
4.1.2. Concerns Participants gave a mixed response when asked how they may have reacted to being presented with concerns they identified during the decision-making process. Those participants who were informed about the possibility of pain post-gastrostomy placement, felt that this knowledge prepared them better for it. Others however, complained about the lack of information they received: ‘…I'd have still had it [gastrostomy placement] done, but I would have known about it [pain] and I could have prepared myself for it [pain], but like I say, I didn't get told nothing.’ (P1) Another participant reported being distressed when he was only told about the risks associated with having the gastrostomy placed on arrival in the endoscopy suite. He suggests that improved knowledge prior to tube placement could have prevented the significant anxiety he experienced, allowing time for any questions to be answered: ‘I had a consultation by someone …one or two hours before the operation and if she had said that [risk of mortality] to me I would have said oh, that's a bit worrying. What do you mean? And then she may have been able to allay my reservations.’ (P6) However, P6 goes onto to describe how knowing the risks may have made him more anxious during the time leading up to the gastrostomy placement: ‘On the other hand, I might have been petrified then going down. You just don't know what is right or wrong [to tell people].’ (P6)
Most participants were either awaiting gastrostomy removal or heralded some hope of future tube removal. As the expected time that the tube would remain in-situ was a major source of anxiety for many participants, this was felt an important issue to be addressed, in terms of managing their expectations: ‘Just someone sitting down and explaining things better to you and telling you what could happen and how long it is going to be stuck there. Nobody ever told me that.’ (P3) Nearly half of the participants would have liked to consider the impact of HEF during the decision-making process, even though they believed this would not have altered the decision outcome. P1 suggested they may have refused gastrostomy placement if they had been aware of the consequences, but she was not consistent in this view: ‘I would have liked for them to have sit down and explain how they were going to do it and what it were going to be like once I had it in my belly, the pain, what you were going to be like after I had it in.’ (P1) ‘If they had said I was going to be in agony after this, I probably wouldn't have had it done. I were literally in agony.’ (P1) P1 later described how she would still have had the gastrostomy placed: ‘I'd have it done (…) Yeah, but like I say I don't feel like I am benefiting from it really.’ (P1)
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Some participants reported had they considered their concerns related to being on HEF it may have prepared them for life on HEF, by better managing their expectations. However, several participants also thought that being asked to consider the potential consequences of being on HEF may have been too much information and even discourage patients from having the tube placed: ‘Should they say well it is going to restrict you in bed as well, it is going to restrict this, restrict that. (…) They don't give you all that information, because then at the end of the day, you would probably say well I am not having it then.’ (P2) Several participants described the multiple clinical issues they had to consider at the same time as considering the gastrostomy placement. Participants informed that they have ENT cancer described having to cope with the shock of the diagnosis; the treatment plan; the removal of teeth; in addition to the need for a gastrostomy. The focus for most participants remained on overcoming the primary indication for the gastrostomy. Some felt that being asked to fully consider the impact of HEF may have caused additional anxiety and were content with dealing with any adverse consequences as they occurred:
P5 who was experiencing repeated bouts of aspiration pneumonia initially refused gastrostomy placement, because he felt he could not give up oral diet. Following a second diagnosis of aspiration pneumonia, he agreed to have the gastrostomy placed: ‘the chap at the chest clinic at the [hospital] said you either persevere with it; you either just fade away; or you have the PEG. Three options that you want to make.’ (P5) 4.2.2. Felt no choice given As most patients had the gastrostomy placed in preparation for radiotherapy to the head and neck, the tube placement was perceived to be part of a treatment package that included radiotherapy and the removal of teeth rather than a decision in its own right: ‘Well no, they didn't discuss it with me, they just said that some patients have problems so I was having a PEG fitted.’ (P3) With the benefit of hindsight some patients accepted that they needed to have the tube placed:
‘I think it would have probably been too much to take in, because I would have thought well it doesn't affect me now. It may not affect me, so why worry about it.’ (P9)
‘Well I read a little booklet and it said that you had a choice. Well they didn't give me any choice. You know. But then again I am not going to say that that was wrong, because I did need it.’ (P4)
Participants emphasised their trust that the health professionals knew what was best for them, having treated many other patients with the same condition. They perceived that gastrostomy placement was not the priority for the treating health professionals; it was just something that had to be done as part of the treatment:
4.2.3. Felt had no choice due no viable alternative Some participants described feeling that there was no choice about gastrostomy placement because no viable alternative option exists. These participants perceived had they not had the gastrostomy placed, they would not have been able to take adequate oral diet, which may have had serious consequences in terms of their prognosis:
‘That [the gastrostomy] didn't seem to be the most important thing. The most important thing was they told us about the operation and everything and how it was possibly affect my speech. But the PEG didn't feature very highly while I was in hospital.’ (P11) However, one participant was dissatisfied with gastrostomy placement being considered part of a treatment package: ‘No, nobody told me, you know, how long it [gastrostomy tube placement] were going to be. And if you started asking they were just, you know, it is part of the treatment, go away.’ (P3)
‘I read all the leaflets on it and I thought mmm, you know, we really need to do this, you know. Where the tumour was in the back of my tongue as well, it is all where the swallowing function takes place anyway so it was a bit of a no brainer from that side’ (P6) Other patients felt that gastrostomy was the only way they would be able to self-manage and therefore leave hospital: ‘…. if I wanted to go home, I need to put that [gastrostomy] in so I could feed.’ (P8). 4.3. Theme 3. Expectations and decision regret
4.2. Theme 2. Perceptions of choice Participants had a varied perception of how much choice they had with regards the placement of the gastrostomy. 4.2.1. Felt had a choice to place gastrostomy A minority of patients felt they had a choice about gastrostomy placement. These patients described being presented with some information on gastrostomy placement and the reasons why the medical team felt it was necessary, but were also made aware that it was their decision to make: ‘she said this is what happens, and she gave us some paper work. You think about it. It is your decision. But this is what it will do for you and then read all this.’ (P2)
4.3.1. Expectations prior to gastrostomy placement Most participants ‘didn't know what to expect’ (P4) about what it would be like to live on HEF. From diagnosis with cancer, decisions regarding the treatment plan were being made very quickly and there was little time to think too far into the future. ‘It was all about just getting through it. I didn't think ahead. And if I had of …. thought ahead … I [would have] thought I would be better within three months. You know, I didn't realise it would have such a knock-on effect.’ (P11) Some participants felt that they would not have been able to imagine what it would be like to be on HEF; and if asked to consider the potential impact, they may have reacted by thinking that this wouldn't be the case for them‘:
Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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‘At the time I would have thought that it couldn't possibly affect me as bad as that. I might not have believed all that. I would have thought that is the worst that could happen, not that's definitely going to happen’ (P11) During decision making, participants gave little thought to the physical, practical, social or psychological concerns that they subsequently identified because of their experience of living on HEF. On reflection, most participants generally felt that being on HEF was less of a burden than they thought it would be. Despite changes to the way of life they were accustomed to, most participants described how they adapted to being on HEF by adopting a new routine. The ability to adapt was reflected in the way participants described getting used to the presence of the tube; the change to their daily routine and their inability to take oral diet. ‘I thought it was going to be worse after than what it is. I thought you would be able to feel it more and you can't. I just thought everything about it was going to be worse and it is not.’ (P2) Participants, who described their expectations being met, generally referred to how being on HEF had facilitated the achievement of a positive outcome, including preventing choking, maintaining nutritional intake and in many cases survival: ‘I think if I hadn't had this in, I don't think I would have been here. Because I wouldn't have been able to eat.’ (P10) Though most participants felt being on HEF had met their expectations with regards to tolerating the treatment administered and ultimately survival, they did not all experience the weight control or an increase in their energy levels that they thought they would: ‘I just don't know, all my expectations are gone, I just thought it were going to be right good. I would put weight on like that, but it's not, it's not true.’ (P1) Most participants reported frustration at the time it had taken for their dysphagia to resolve, and the subsequent effect it had on the length of time the gastrostomy had remained in-situ. ‘I didn't realise how long I would be stuck with it….I just thought it were going to be a short term thing while my treatment finished and everything would sort of revert back to normal.’ (P3) When making the decision P11 admitted being a ‘stick your head in the sand type of person’ but was surprised by the impact that HEF had on her home life, describing the effect on her social life as ‘massive’. She explained: ‘I wasn't prepared for that [the effect on her social life] as I wasn't prepared about what having the PEG entailed.’(P11)
4.3.2. Decision regret Most patients felt they did not regret having the tube placed and would make the same decision again. This is despite experiencing some of the negative impacts of being on HEF: ‘No. I don't regret it being placed, I just regret how it has changed my life. But not the PEG, no.’ (P11)
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Two participants suggested that they regretted having the tube placed (P1 and P3). They believed that the placement of a gastrostomy had not met their expectations. Notably, they were also the only participants who experienced significant distress relating to tube placement and the impact of HEF. P3 was distressed about length of time the gastrostomy had been in-situ, failing to come to terms with the tube's presence. Despite repeatedly stating she regretted the gastrostomy being placed she still perceived the tube to have ‘helped her survive’. P1 who was very distressed about the level of pain post gastrostomy placement, went on to say she would probably have the tube placed again, recognising that she would not have met her nutritional needs without it.
5. Discussion The findings of this qualitative study show that decision making about commencing HEF often occurred quickly at a time when patient concerns were dominated by a potentially life threatening diagnosis. Having experienced the holistic, psychosocial impact of HEF, most participants reflected that decision-making was dominated by the potential benefits of HEF and their preference to experience a positive health outcome rather than potential concerns about HEF. Indeed, most participants thought that they had no real choice about gastrostomy tube placement because this was a requirement of their treatment for ENT cancer. With hindsight, many participants were not concerned about not having a choice as they thought that there was no viable alternative. Irrespective of the amount of perceived choice and the impact on the decision outcome, information about the impact of HEF was important as it informed patient expectations. Although some participants reported that information about the effects of HEF enabled them to prepare better and manage their expectations about gastrostomy tube placement, others thought that such information would raise their anxiety levels. Information about the length of time that the feeding tube would be in-situ may help to manage expectations. Most participants reported that HEF was less burdensome than they imagined and they adapted to HEF by adopting a new routine. Some participants did not experience the weight gain or increase in energy levels that they would have expected after commencing HEF. There are many possible reasons for this including non-adherence with feeding plans, gastrointestinal intolerance, or malabsorption. Other participants reported pain and some were frustrated by the length of time their dysphagia took to resolve. Most participants did not regret their decision despite having some negative experiences of HEF. The two participants who expressed regret both experienced significant distress but both accepted that HEF had probably resulted in their survival. Not surprisingly, survival appears to reduce decision regret (i.e. the negative emotions that may arise if participants believed a more favourable outcome could arise from the decision to commence HEF). The current study's findings that the benefits of HEF outweighed concerns are consistent with the factors that patients with Motor Neurone Disease (MND) reported ‘triggered’ them to agree to have a gastrostomy placed, such as increased loss of weight or difficulties swallowing [7]. Most participants in the present study had ENT cancer, which involved making the decision in a short time frame with high probability of future tube removal, in contrast to patients with a long-term neurological condition, where the patients have more time to make the decision and the gastrostomy is likely to remain in place for the rest of their lives.
Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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In line with previous research by Kwong and colleagues [17], participants in the current study with ENT cancer viewed the gastrostomy as a necessity, referring to preventing choking, weight maintenance and survival as important issues. Participants often perceived the placement of a gastrostomy as part of the treatment plan which is consistent with previous research where patients displayed a willingness to accept a gastrostomy to maintain nutrition and hydration when facing complex treatment decisions [18]. Additionally, participants in the current study perceived that being presented with too much information about the realities of living on HEF may have increased anxiety and may even have resulted in a decision to refuse gastrostomy placement; an intervention the majority went on to view as a ‘life-line’. When multiple complex decisions are being made in a short time frame including that relating to gastrostomy placement, participants appear to favour a ‘fast and frugal heuristic’ approach to decision making, making the judgement that the ‘doctor knows best’ and focussing on the dominant cue of survival [19]. A previous qualitative study, concluded that when the decision was made quickly, the advice of the health professionals was followed without much hesitation [20]. This current study failed to recruit any patients with a chronic condition. The role of considering patients values in the decision to have a gastrostomy placed when the patient has more time to reflect on the future impact of home enteral feeding on their lives, should be the focus of future research. There is growing support in the literature for patient's ‘values’ to be clarified during decision making when there is a preference based decision to be made, particularly where there are two options that may have comparable outcomes [4]. Most participants in this study supported the view that there was not a viable alternative option to having a gastrostomy placed, which is consistent with previous qualitative research in this field [21]. However, informed patients with mental capacity have the right to refuse gastrostomy placement, even if the medical team feel it is in their best interests [9,22]. Previous qualitative, interview studies have described how patients desire more information about the process of feeding and effect on prognosis [23]. Patients with MND who are more active in seeking information, are more likely to refuse the placement of a gastrostomy possibly because of an increased awareness of the potential impact of the intervention [24]. However, some participants in this study reported that being well informed may have increased their anxiety, and struggled to recognise the ability to adapt to life on the HEF. Despite there being a potential to increase patient anxiety, exploring patient's perceptions of the impact of HEF during decision making may infer benefit in terms of better managing patient's expectations. Some participants in the current study would have liked more information prior to decision-making, suggesting that they value a greater understanding of what HEF would entail and being prepared for potential adverse consequences. Participants described how they did not expect the gastrostomy to remain in-situ for as long as it had; a finding consistent with Van Rosendaal and colleague's reports that patients expect more positive outcomes of their clinical course, than described by their physicians [23]. Therefore, clarifying patient ‘values’ during decision-making to have a gastrostomy placed may prepare patients better for life on HEF. This suggestion is supported by Snyder and colleagues' findings that informing surrogate decision makers of the advantages and disadvantages of commencing enteral feeding, improved knowledge and resulted in more realistic expectations of clinical benefit [25]. However, caution should be taken to ensure the potential benefits of a more rigorous decision making process do not result in an increase in patient's anxiety, particularly if it is unlikely to change the decision outcome, such as
when a gastrostomy tube is placed prior to radiotherapy for ENT cancer. Participants' perceptions about the level of choice they had in the decision to have a gastrostomy placed, varied between individuals. In line with findings from Greenaway et al.'s qualitative study, most perceived that they were either not given a choice or had no choice, believing there was not a viable alternative [21]. There may not have been a viable alternative to having a gastrostomy placed in order to experience a positive health outcome for many of the participants. However, there is a viable alternative to gastrostomy placement by way of continuing with naso-gastric feeding or with regards to patients diagnosed with ENT cancer, only placing a tube once it is required rather than prophylactically, which is the focus of an on-going NIHR research programme [26,27]. With the length of time a gastrostomy is in-situ for being an important issue for patients, an argument may be made for presenting them with the choice and potential consequences of gastrostomy, naso-gastric tube or no tube. Information-giving needs to include the associated evidence to ensure a decision is made in line with their own values. Most patients did not express dissatisfaction about having no real choice during the decision to have a gastrostomy placed. Only two patients reported a negative experience of life on HEF and were upset by the lack of choice offered. In the U.K., policy and guidelines exist to promote shared decision making and achieve informed consent [28]. However, some patients wish that the medical team will make the decisions in a more paternalistic manner, holding the view that professionals know best. Ende and colleagues' instrument for measuring patient preferences for autonomy found that patients were less inclined to make decisions as the severity of their condition increased [29]. This contrasts with patients with longterm neurological conditions who can make the decision over a period of time, ‘taking control’ of the decision, where they don't have control of their progressive disease [24]. Decision support processes should consider patient's preferences with regards to their involvement in the decision to prevent an increase in anxiety that participants describe in this study. This research is based on the perceptions of patients already on HEF and are not representative of how a patient with no prior knowledge of HEF would have thought or acted during the decision-making process. Future research should explore the temporal changes in patients' perceptions on the decision-making process at intervals from pre-placement through to long-term post placement. Most patients in this study had ENT cancer where future tube removal was likely. Facilitating the inclusion of patients with long-term neurological conditions with purposive sampling may have produced a greater range of views to those presented in this study. Caution should be used in the implementation of these findings to all patients making the decision to have a gastrostomy placed. The findings do provide some insight into patient preferences, concerns and expectations, or their values, in decision making about gastrostomy placement. Patients may have a varied need for their values to be clarified during decision making to have an enteral feeding tube placed. Therefore, the decision-making approach may need to be modified based on patient preferences for involvement and the context in which the decision is being made. The insights gained from this study will further inform health professionals involved in providing decision support for patients considering the placement of a gastrostomy.
Conflict of interest statement All authors confirm there were no conflicts of interest.
Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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Statement of authorship SW is the PI and independently designed, conducted and wrote up the study with the support of LB as his academic supervisor. LB critically reviewed the article. Funding sources
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This study was formed the dissertation for the lead authors MSc in Clinical Research, that was funded by the NIHR. No additional funding was required for this project. Acknowledgements This study was the result of the dissertation for a MSc in Clinical Research funded by National Institute for Health Research (NIHR). References [1] General Medical Council (2008). Consent: patients and doctors making decisions together. Gibbs G (2011). Analysing qualitative data. SAGE publications. [2] Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: a model for clinical practice. J General Intern Med 2012;27(10):1361e7. gare F, Col N, Bennett C, Barry M, Eden K, et al. Decision aids for [3] Stacey D, Le people facing health treatment or screening decisions. Cochrane Database Syst Rev 2014;1:CD001431. [4] Fagerlin A, Pignone M, Abhyankar P, Col N, Feldman-Stewart D, Gavaruzzi T, et al. Clarifying values: an updated review. BMC Med Inf Decis Mak 2013;13(Suppl. 2):S8. [5] Stroud M, Duncan H, Nightingale J. Guidelines for enteral feeding in adult hospital patients. Gut 2003;52(Suppl. VII). vii1evii12. [6] Brotherton A, Abbott J, Aggett P. The impact of percutaneous endoscopic gastrostomy feeding upon daily life in adults. J Hum Nutr Dietetics 2006;19(5):355e67. [7] Stavroulakis T, Baird W, Baxter S, Walsh T, Shaw P, McDermott C. Factors influencing decision-making in relation to timing of gastrostomy insertion in patients with motor neurone disease. BMJ Support Palliat Care 2013;4(1): 57e63. [8] Westaby D, Young A, O'Toole P, Smith G, Sanders D. The provision of a percutaneously placed enteral tube feeding service. Gut 2010;59:1592e605. [9] DeLegge M, McClave S, DiSario J, Baskin W, Brown R, Fang J, et al. Ethical and medicolegal aspects of PEG-tube placement and provision of artificial nutritional therapy. Gastrointest Endosc 2005;62(6):952e9. [10] Stathopoulos P. Percutaneous endoscopic gastrostomy: patients' outcomes, adequacy and quality of information given to decision-makers and procedure acceptance. Ann Gastroenterol 2011;24(1):29e34.
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[11] Straus S, Sackett D. Evidence-based medicine: how to practice and teach EBM. 3rd ed. Elsevier Churchill Livingstone; 2005. [12] Lincoln Y, Lynham S, Guba E. Chapter: paradigmatic controversies, contradictions and emerging confluences, revisited in Bryman (2011). The Sage handbook of qualitative research. 4th ed. SAGE Publications; 2001. [13] Good clinical practice (GCP) guidelines (2014). International conference on Harmonisation. Accessed from: http://ichgcp.net/. [14] Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77e101. [15] Spencer L, Ritchie J, Ormstone R, O'Connor W, Barnard M. In: Ritchie J, Lewis J, Nicholls C, Ormston R, editors. Qualitative research practice. 2nd ed. London: SAGE Publications; 2014. p. 269e93. [16] Guest G, MacQueen K, Namey E. Applied thematic analysis. Thousand Oaks: Sage; 2011. [17] Kwong J, Stokes E, Posluns E, Fitch M, McAndrew A, Vandenbussche K. The experiences of patients with advanced head and neck cancer with a percutaneous endoscopic gastrostomy tube: a qualitative descriptive study. Nutr Clin Pract 2014;29(4):526e33. [18] Callahan C, Haag K, Buchanan N, Nisi R. Decision-making for percutaneous endoscopic gastrostomy among older adults in a community setting. J Am Geriatric Soc 1999;47(9):1105e9. [19] Marewski J, Gigerenzer G. Heuristic decision making in medicine. Dialogues Clin Neurosci 2012;14(1):77e89. [20] Liley AJ, Manthorpe J. The impact of home enteral tube feeding in everyday life: a qualitative study. Health Soc Care Community 2003;11(5):415e22. [21] Brotherton A, Abbott J. Clinical decision making and the provision of information in PEG feeding: an exploration of patients and their carers' perceptions. J Hum Nutr Dietetics 2009;22(4):302e9. [22] Mental Capacity Act (MCA). 2005. Accessed at: http://www.legislation.gov.uk/ ukpga/2005/9/pdfs/ukpga_20050009_en.pdf. [23] Van Rosendaal G, Verhoef M, Kinsella. How are decisions made about the use of percutaneous endoscopic gastrostomy for long-term nutritional support? Am J Gastroenterol 1999;94(11):3225e8. [24] Greenaway L, Martin N, Lawrence V, Janssen A, Al-Chalabi A, Leigh P, et al. Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients' perspectives. J Neurol 2015;262(4): 1002e13. [25] Snyder E, Caprio A, Wessell K, Lin F, Hanson L. Impact of a decision aid on surrogate decision-makers' perceptions of feeding options for patients with dementia. J Am Med Dir Assoc 2013;14(2):114e8. [26] Paleri V, Barclay S, Donnelly R, Cowper T, Franks J, Patterson J, et al. A feasibility randomised controlled trial of pre-treatment gastrostomy tube versus oral feeding plus as-needed nasogastric tube feeding in patients undergoing chemoradiation for head and neck cancer. Protocol published on NIHR website: http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0009/ 94644/PRO-12-35-32.pdf. 2014 [Accessed 27 August 2015]. [27] Bradley P, Brown T, Paleri V. Gastrostomy in head and neck cancer: current literature, controversies and research. Curr Opin Otolaryngol Head Neck Surg 2015;23(2):162e70. [28] Foot C, Gilburt H, Dunn P, Jabbal J, Seale B, Goodrich J, et al. People in control of their own health care. The state of involvement. Kings Fund; 2014. [29] Ende J, Kazis L, Ash A, Moskowitz M. Measuring patients' desire for autonomy. J Gen Intern Med 1989;4(1):23e30.
Please cite this article in press as: White S, Brereton L, Examining the role of patient values in decisions about long-term enteral feeding: A qualitative study, Clinical Nutrition (2017), http://dx.doi.org/10.1016/j.clnu.2017.04.022
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