Author s response to reviews

Author s response to reviews Title: "I just think that we should be informed" A qualitative study of family involvement in Advance Care Planning in nursing homes Authors: Lisbeth Thoresen (lisbeth.thoresen@medisin.uio.no) Lillian Lillemoen (lillian.lillemoen@medisin.uio.no) Version: 1 Date: 29 Aug 2016 Author s response to reviews: Dear Editor and reviewers, Thanks for valuable feedback on our article I just think that we should be informed A qualitative study of family involvement in Advance Care Planning in nursing homes. We have read the comments carefully, and very much appreciate your suggestions on improving the paper. We will reply to each comment in the order they are presented, and explain the changes we have made in the paper. These changes will also be indicated in the manuscript: added text is highlighted in RED, and where text is deleted, strikethrough is used and sometimes a comment added to explain. We have made some substantial changes to parts of the article, for instance The Background. Since we are asked to indicate all changes in the manuscript, this makes part of the manuscript quite messy and perhaps challenging to follow. We apologize for this. The manuscript is long, but the number of words will be reduced when deleted text is taken out. Reviewer 1: Methods: 1) I am not quite sure how the research question and the research process were interrelated. If I got it right, the focus shifted from a first research question (was it, as mentioned in line 147 "identify good practice" of ACP? If yes, what was found with regard to that question?), to the questions on " how family involvement can contribute to find out what is important to the resident" and "how family can promote participation of the resident in ACP discussions" (p 9) after a first interview in nursing home A. I would have expected that, according to qualitative methodology, often building on grounded theory, that subsequent interviews were led using the frame of family involvement in ACP, therefore searching for interviewees with different constellations (e.g. using purposive sampling). Yet, according

to the depiction in 186, it seems that the interviews were already done and re -analyzed. This fact is not clear, leading to one among other methodological questions that need to be addressed. Authors response: We are sorry that we haven t been able to describe the actual and presented qualitative study and it s relation to the larger research project more clearly. The larger project consists of three parts or sub-projects, and the qualitative study which is presented in the article is one sub-project. The relation between the larger project and the qualitative study has now been described more detailed in the article, see lines 192-207. We have also added a table (Table 1, line 770) to show the relation between the parts of the research project. The research question in the qualitative study was initially to study how ACP conversations were carried out (observations) and how patients, relatives and staff experienced participation (interviews). Through observations and interviews, we hoped to identify good practice which could be copied or which could otherwise be useful in developing a guideline for ACP in nursing homes (part three of the larger research project). Results from observations are presented in a published article (Thoresen, L., R. Ahlzén, and K.N. Solbrække, Advance Care Planning in Norwegian nursing homes Who is it for? Journal of Aging Studies, 2016. 38: p. 16-26). The observations made the first author aware of patients dependence on relatives in the conversations. In analysing the interviews, primary findings were that relatives felt responsible for their loved ones, and through their knowledge about the patient and their shared life stories, could contribute to identify important aspects and values in the patients lives. Family ethics worked out to be a fruitful theory to understand and develop our findings. Observations, analysis of the interviews and family ethics together helped us develop more nuanced research questions when it comes to family involvement in ACP. 2) Please add the first research question, interview concept (questions/frame), exact methodology, coding, analysis and sampling strategy. Only the nice but comprehensive book of Patrician Bazeley on qualitative research is mentioned, yet, the exact methodological approach, transcription of data, coding strategy is not sufficiently described. Authors response: Hopefully, with the more detailed description of the larger research project, and particularly the qualitative study presented in the revised manuscript, it should be clear that the research questions to be answered in the presented study are (line 130 133): How can family involvement in ACP-conversations 1) contribute to identifying what is important to the nursing home patient at this point of life, and 2) promote the patients participation in decisions on future treatment and end-of-life care? Methods has been extended, and divided into Participants (213), Participant observations (233), Qualitative Interviews (250) and Analysis (266), and applied references to literature

have been added, like Kvale and Brinkmann (2015) Interviews. Learning the Craft of Qualitative Research Interviewing, line 252 and 257, and Fangen (2010) Deltagende observasjon (Participant observations), line 237. How nursing home wards and participants were recruited, see comment further down. Interviews were tape recorded and transcribed verbatim by author one and a master s student (264). We have done substantially changes to the section Analysis (266). We have deleted some text (287-300), and now describe the process of analysing the data more detailed, and where content analyses as well as thematic coding have been used. During the analysis, more precise research questions were developed (267-302). 3) Regarding the sampling it seems that the strategy was to do one interview in each nursing home included in the larger survey (with one missing). If this is right I wonder how the interviewees were chosen. Was it a convenience sample? If yes, its limitations regarding the research question have to be addressed. I would have expected a purposive sampling if it was to investigate "family ethics and involvement" - including lonesome persons and different family structures. It is well known that many elderly are not embedded into a good family network; this would be an important target to investigate qualitatively if the importance of family involvement in ACP is investigated for nursing home residents. The conclusion that this was not the case since this was not seen in the qualitative interviews might be a problem of the sampling strategy, having an impact of the validity of the important research question. To me it is also not clear why no resident interview was undertaken in nursing home G- was it due to time or structure- If the latter this would be an important fact. As depicted in the ethics part, only residents capable of decision making were included. Yet, with regard to ACP in nursing homes, demented and otherwise cognitively impaired residents are an important group, which might need different ACP strategies (see eg. The work of Jürgen in der Schmitten and Volicer et al 2002. Advance Care Planning by Proxy for Residents of Long- Term Care Facilities Who Lack Decision-Making CapacityJ Am Geriatr Soc 50:761-767, 2002.) Ethics approval is also given if people lack decisional capacity, if results cannot be obtained in persons with decisional capacity. Since ACP is done for both groups patients not capable of decision making should have been included (since they are not, impact on the results should be alluded to) Authors response:

The original aim of the qualitative study was to gain data from ongoing ACP-practice in nursing homes, and which could be useful in developing a guide for ACP-conversations. The guide has been developed, partly based on results from this qualitative study, and implemented in four nursing homes. Evaluation of the use of the guide will be published later. As described in the Analysis section (266) in the manuscript, the research questions concerning family involvement have been developed during the process of analysing the data; that is after the observations and interviews were conducted. When it comes to the sample, the conversations which were observed were part of established routines in the nursing homes, which means that they were not arranged for this study. If for instance the local contact assessed the next admission conversation (where advance care planning took place) as suitable for observations, and the participants gave permission, then we included this conversation in our sample. Except from the recruitment criteria, we could not influence which conversations, patients and relatives to observe and interview. We had to leave this part to the local contact. That said, after contact had been established, we were often invited to the first possible conversation to be held in the ward, and we found the data from these wards to be relevant and rich to our project. When it comes to ward G, the wife of the patient told us during the conversation that a lump had been found in one of her lungs, and both she and her husband seemed anxious about this. In this situation, I decided that I didn t want to bother them with an interview. We agree that patients with dementia also should be included in ACP if possible, and this is something we have stressed in the guide for ACP-conversations in nursing homes, and in implementing the guide in nursing homes. In trying to capture how ACP is practised and experienced, we included only patients capable of giving consent because this made it easier to conduct the study. Another reason was, that in the participating nursing home wards, only very few patients with dementia were routinely included in ACP. Given the high number of patients with cognitive decline in Norwegian nursing homes, of course these patients should also be included in research. That said, what we present and discuss in the article is very much relevant to patients with dementia, their families, and how ACP is conducted. Concept: Reviewer s comment: Although it is reasonable to argue that ACP has focused more on patients individual autonomy and "health care ethics" rather than relational autonomy and "family ethics" (would be nice to broaden the ethics background on this concepts, also e.g. including care ethics, narrative ethics and not only the discussion of J/N Lindemann and Charles Taylor), ACP includes relatives as part of the process since its inception in the 1990ies (Teno et al (1994), Advance care Planning: Priorities for ethical and empirical research. Hastings Center Report, 24(6):32-36; Singer PA, Robertson G, Roy DJ. CMAJ. Bioethics for clinicians: 6. Advance care planning.1996 Dec 15;155(12):1689-92.) as well as targets of interventions (the study of

Detering et al, cited in the paper) I agree that there is more in the family ethics approach: being intertwined, defining what is important to the resident, shared experiences of death and dying), which is an important result of the study.yet I do not see that is was so overlooked as depicted. Authors response: We have decided not to broaden the background part when it comes to ethics theory, but rather show how family perspectives have evolved as part of development of end-of-life care, and we describe more detailed the content of family ethics which we see as central and relevant to our study, see line 84-125. We absolutely agree that relatives are included in ongoing ACP, but based on the observations as well as interviews we think it is very important to consider how they are included. The point we want to make is that in planning for the patient s future, families thoughts and reflections are valuable in themselves, and they can also add important information and aspects about the patient that might improve patient participation as well as end-of-life care. Reviewer s comment: I have some doubts about the "ACP" concept applied in the nursing homes. Based on the descriptions given of the conversation done by some physicians, it seems that the quality of the discussion was in some cases quite low. To only ask if residents want some specific medical interventions without a qualified and structured discussion on residents values is not best practice ACP. This should also be discussed in the paper. Authors response: We fully agree, and these aspects have been discussed in the published article in Journal of Aging Studies. Reviewer #2: This is an interesting paper dealing with an important and highly topical issue: the role of relatives in older peoples' advance care planning in nursing homes. On the basis of qualitative socio-empirical data, the authors explore framework conditions of advance care planning in care facilities in Norway and formulate suggestions for improving end-of-life communication. Overall, the paper is well written and argued. The discussion of the findings and their reflection in view of family ethics make an important point. Still I have a few questions and remarks that could help to further improve and substantiate the piece's overall rationale: - Approach to "empirical ethics": The authors employ material from qualitative empirical research (participant observations of ACP-conversations in nursing homes plus subsequent interviews with patients and relatives) in order to make an ethical point (that family involvement in ACP needs to be strengthened and individualistic conceptions of personal autonomy need to be expanded to include family relations). However, it is not really clear how these normative conclusions derive from the empirical material. Do the authors hold the view that peoples' actual moral opinions directly translate into ethical claims? Or do they rather rely on some underlying normative standard and use the empirical material in order to

check in how far it is actually implemented in practice? Either way, the normative premises, theoretical conceptions, and methodological approaches behind their specific combination of socio-empirical research and ethical reflection and proposals need to be made more explicit. Authors response: The relation between the empirical and the normative is a difficult one, and perhaps this is still not well handled in the article. In the article, we question whether the normative principle of autonomy is sufficient to underpin ACP, and this question is developed from empirical data. Hilde Lindemann visited the Centre for Medical Ethics, and we were introduced to family ethics. We found that her perspectives resonated well with the analysis we were doing at the time, and so we chose family ethics as a normative theory. This part, as well as the methodology has been made more explicit in the revised manuscript. Reviewer: National framework conditions and specificities: It would be important for an international audience to learn a bit more about the specific socio-cultural, socio-economic, and politico-legal framework conditions of geriatric care, ACP and end of life-decision making in Norway (e.g. on p. 6): Why does such a large percentage of the Norwegian population die in nursing homes? What are the relevant socio-political framework conditions of care for the elderly (e.g. family situation, insurance system and coverage of care)? What exactly does the Norwegian Patients' and Users' Rights Act say about patient autonomy in end-of-life decision making (e.g., proxy decision making, assisted suicide, active/passive euthanasia)? Also significant differences to other national systems might be interesting. Authors response: Information about the national health care system has been added, as well as detailed description on what the Norwegian Patients and Users Rights Act says about patient participation, decision making and euthanasia, see 134-164. The question of why such large percentages die in nursing homes is an interesting one, and the statistics on place of death are often referred to in debates on end-of-life care. To our knowledge, there is no research that explains these statistics, and we have decided not to go further into this issue in the article. As we see it, a health care policy plan on end-of-life care in general, and place of death in particular, is lacking in Norway. Reviewer: Explain family ethics and relational autonomy: The authors claim that the traditional approach to advance care planning needs to be complemented by the perspective of family ethics and relational autonomy. In order for the reader to understand the implications of this claim, it would be important to say a bit more about the basic principles of family ethics and especially relational autonomy (e.g., p. 6): Which specific approach to family ethics do the authors have in mind? What concept of relational autonomy do they favor and why? What are the implications for ACP and end of life decision making.

Authors response: We have decided to only focus on family ethics, which means that the concept of relational ethics has been taken out. This is because we find that family ethics has evolved as part of the development of end-of-life care as described in the manuscript, and we also see the family ethics perspectives as central and relevant to our study and empirical findings. What we see as especially important, and which resonates with the empirical findings, are claims that being responsible is a given part of being a family; how family care is enough in itself and doesn t have to be explained; how the old persons and relatives in our data are connected in complex ways that make it very difficult to think of decisions as something that only belongs to the patients; how relatives can add so many valuable details about their loved ones, information and details that can bring insight into what is important to the patients at this stage of life, see 84-125. - Methods: Maybe the authors could say a bit more about the methods they used for analyzing the observations and interviews: Apparently, the method employed was not Grounded Theory but rather a combination of inductive and deductive steps (p. 9). How exactly was this process organized? What was the pertaining methodological approach (e.g., qualitative content analysis)? Were the field notes and interview transcripts coded for analysis? What categories and principles were employed in order to make the results of the interpretation reproducible or at least avoid / reduce potential bias? Authors response: We have done substantially changes to the section Analysis (266). We have deleted some text (287-300), and now describe the process of analysing the data more detailed, and where content analyses as well as thematic coding have been used. During the analysis, more precise research questions were developed (267-302). There has been some time between conducting the study, the analytical process and writing the article, and through the hermeneutic circle our understanding of the material is changing. - Critical discussion of family ethics approaches to advance care planning: The authors conclude that family ethics and relational autonomy need to be strengthened in the field of ACP for older persons in nursing homes (p. 22). However, their account of potential problems and difficulties of this proposal is rather brief and superficial (p. 26). Given that several studies show considerable differences between the end of life-preferences of patients and the perspectives and assumptions of their relative proxies (e.g., Zweibel/Cassel 1989, Pruchno et al. 2006, Winter/Mockus Parks 2008), this is not unproblematic. Furthermore, questions regarding issues of paternalism, patronizing, or even conflicts of interest are not even addressed. These aspects need critical reflection on the level of analysis (especially since the relatives seem to have played a rather dominant role in the interviews (p. 25)) as well as on the level of conclusions (p. 25-26).

Authors response: We agree that these are very important aspects, and we have added a section in the Discussion part with the title: Family ethics and paternalism, see 620. - Outlook on further research needed and concrete suggestions for improvement: Given that the authors claim that present approaches to planning nursing care for elderly persons are insufficient, it would be interesting to hear a bit more about their concrete suggestions for improving the current state of the art (both on a theoretical and on a practical level): How exactly could an individual autonomy approach in advance care planning be complemented with a family ethics approach (p. 26) without compromising individual autonomy? What concrete steps could be taken to implement such an approach? And what kind of future research (what research questions, what methods) will be necessary to further clarify how theories on relational autonomy and family ethics may be valuable in ACP in nursing homes (ibid.)? Authors response: In the Conclusion (698), we have added a short description the implementation of an ACP guide in Norwegian nursing homes (719-726). Results from the present qualitative study have informed the guide. Developing and implementing the guide, as well as evaluating the use of the guide are part three of the larger research project. In the guide we suggest that patients must be informed that participation in ACP-conversations is voluntary, and they should be asked if they want relatives to participate. In the written invitation to ACP-conversations, the aims and content of the meeting is described, and we advise patients and relatives to discuss the future and possible wishes and preferences prior to the ACP-conversation. The guide suggests that an ACP-conversation should cover not only medical questions, but more broadly the life, future, and well-being of the elderly patient. We also point to the importance of seeing ACP as a process, rather than only one single conversation. We find that the guide reflects an individual as well as a family ethics approach. In the conclusion, we suggest further research (730-734), especially on ACP in home care. This is because many patients who receive home care live with family members, and this will make ethics perspectives that pay attention to social relations and context important. We also suggest that in implementing ACP in health care, health care staff should learn about family ethics in addition to autonomy as a main ethical principle.