Abstract
Me & My Wishes are facilitated, resident-centered video-recorded conversations to communicate current and end-of-life care preferences. We describe the video production process of two prototypes in the long-term care (LTC) setting and discuss lessons learned around developing this type of intervention. Partnering with an LTC community allowed us to create videos on-site, document staff time, handle any barriers with video production, and evaluate the process. In this article, we will describe the process of two residents creating Me & My Wishes videos. Both residents responded positively to viewing their edited video (about 20 min), saying the videos would be “good for family or staff to hear feelings about preferences.” Staff members also responded positively to the videos. We discuss two key issues to consider: the possibility that resident preferences may change and the resources to produce and view videos.
Introduction
The challenge for U.S. nursing homes to provide care tailored to the unique needs and preferences has led to a national “culture change” movement in long-term care (LTC) settings. At the heart of this movement are efforts to provide person-centered care, emphasizing purpose, meaning, choice, and keeping the person as the focus of care (Koren, 2010). Two challenges in LTC are how to determine resident preferences and how to communicate those preferences to family members and staff. Preferences for today (what residents want for their care now) may include everyday activities residents want to engage in or how caregivers deliver care (e.g., caregivers moving slower while providing care). Preferences for end of life (EOL) might include who residents want to spend their time with in their final days or a preference about a particular treatment such as tube feedings. Knowing resident preferences is essential to staff’s ability to provide quality care and facilitates families’ ability to make decisions about care.
Current practice in the nursing home setting to identify everyday care needs relies on completing checkboxes (minimum data set) that largely focus on activities of daily living. However, previous research suggests that nursing home residents wish to indicate who is involved in their care conversations, and that staff show care and respect (Bangerter, Van Haitsma, Heid, & Abbott, 2016). Likewise, residents identified desired caregiver approaches (e.g., being treated like a person; Towsley, Hirschman, & Ersek, 2011). Knowledge of resident preferences empowers staff to provide individualized care (Koren, 2010; Shier, Khodyakov, Cohen, Zimmerman, & Saliba, 2014).
Eliciting preferences for EOL rarely involves an in-depth discussion of advance directives upon admission (Reynolds, Hanson, Henderson & Steinhauser, 2008). Moreover, staff may be unaware of resident preferences even if an advance directive is in the medical record because frontline staff may not have access to this information (Anderson, Taha, & Hosier, 2009), and some preferences may not be listed on an advance directive and are not considered a medical treatment or procedure.
Previous studies have shown that residents desire to be involved in care decisions, but their ability to consent or have the opportunity to choose who is involved is not routinely acknowledged by family and staff (Bangerter et al., 2016; Fosse, Schaufel, Ruths, & Malterud, 2014). Our previous research found that conversations about EOL preferences are not initiated and information about preferences are not shared among residents, families, and staff (Towsley, Hirschman, & Madden, 2015). The Institute of Medicine (IOM) report Dying in America acknowledges the need for meaningful conversations with patients, families, and caregivers to promote awareness, explore care options, and have open exchanges about EOL, and recommends the use of technology to enhance communication about resident preferences (Institute of Medicine, 2014).
In this article, we describe the results of prototyping an innovative approach to facilitating conversations about preferences. Me & My Wishes (MMW) are facilitated, resident-centered video-recorded conversations that communicate care preferences for today and at EOL. The prototyping focused on establishing a systematic approach to video creation and assessing the feasibility of data collection and video production. We describe the process of developing two videos in the LTC setting and discuss major questions and lessons learned around developing this type of intervention.
Method
We utilized a participatory action research (PAR) approach including LTC staff, residents, and researchers (Israel, Schulz, Parker, & Becker, 2001). The partnership with an LTC community (located in the Pacific Northwest and providing four levels of care: senior apartments, residential care, and health care, that is, 24-hr health care and skilled nursing/rehabilitation) allowed us to create videos on-site, document staff time, address barriers to video production, and evaluate the process. The University of Utah Institutional Review Board approved this study. We convened structured discussions with PAR team members that included two LTC staff regarding video content and to structure the conversation guide, which contained four modules (Table 1).
Me & My Wishes Conversation Guide.
Note. Our conversation guide was created to explicate care preferences for today and at end of life. Some of the questions were used in our prior pilot work beginning in 2010, some questions we added based on our pilot work, and some questions were recommended by our PAR team. Some questions are currently being used in community based work such as The Conversations Project and Prepare.org. EOL = end of life; IV = intravenous; PAR = participatory action research.
Pre-Video Production
The PAR team decided that residents from the residential and health care unit who were English speaking, free of communication impairments (e.g., aphasia), and able to participate in a conversation would be eligible for participation. LTC staff identified two individuals and asked if the principal investigator (PI) could talk with them about study participation. One person identified did not participate because, on the day of recording, she requested that we give her friend the opportunity to participate. Her friend said yes and we honored the request, thus approaching three residents and enrolling two. The PI and interviewer (non-staff member trained in social work) reviewed the electronic health record to verify eligibility, explained the study objectives to the residents, invited them to participate, and obtained informed consent.
Video Production
A Nikon D7100 Digital camera, tripod, fluorescent lamps, and accessories were rented from a local camera store. An aide transported the resident to the on-site recording location and helped with care needs (e.g., using the bathroom if necessary) during recording. The interviewer conducted the conversation using the conversation guide while the PI filmed. Participants’ recorded conversations lasted 58 min and 31 min, respectively. The recordings were downloaded to an encrypted laptop. Both the interviewer and PI took field notes of the consent process and video production, recording thoughts and feelings about participation and video production matters.
Debriefing the Video Production Process
Following the recordings, the PI debriefed the interviewer, residents, and nurse aide involved to learn about the video production process (e.g., what worked well, how can we improve the process), including asking about any worries or concerns related to the process. The PI also asked the interviewer and residents about what they liked/did not like about the conversation and if there were any questions or topics that they thought should be omitted and how the video could be used to inform resident care.
Editing Me & My Wishes Videos
A specific goal of the prototyping was to develop and trial a systematic editing process. Final Cut Pro X software (an Apple product deemed for new or experienced editors) was used for editing (Chadwick, n.d.). During this formative stage, each video took about 6.5 hr to edit. We identified three criteria to inform editing decisions: redundancy, relevancy, and context. The process began by viewing the entire raw footage. The PI and Research Assistant (RA) noted potential clips to edit. If the PI or RA were uncertain or disagreed about a segment, they discussed and examined the clip of interest for redundancy, relevancy, and context to come to a consensus decision. Edits were made if stories or preferences were repeated, if narrative was not relevant to the four modules, or if context was not related to a preference. We removed the interviewer asking the questions and long pauses. If the narrative was determined to relate to a preference or value that could help inform a decision, it was kept.
Initially, to be attentive to potential viewers (i.e., staff, family), we conceptualized videos lasting about 10 min. Because of the relevancy of the information and positive feedback from PAR staff, each video lasted about 20 min. Our goal was to create four 5-min modules, but residents sometimes shared more information and preferences related to one module compared with another. To keep with person-centered care, we allowed for this flexibility. Upon completion of the editing, the PI met with the LTC staff who were PAR team members and with each resident to view the edited videos for feedback. Both residents received a copy of their edited video.
Results
Two female residents (both over age 80, one from each of the residential care and 24-hr health care units) created MMW videos. During the consent process, one resident expressed she was a little nervous about the video recording but did not hesitate to participate. At the time of recording the video, one resident expressed excitement; both exhibited a sense of anticipation but became at ease with the video equipment and conversation within a few minutes. Our debriefing interviews with residents explicated that residents were receptive to creating resident-centered videos, and they did not feel that any question should be omitted. The edited videos were 19:33 and 20:40 min, respectively.
MMW Videos
The person-centered nature of the videos was evident in the personal nature of their unique responses. The participants shared specifics of their personal lives, identified ways for everyday care to be better, and discussed EOL expectations and preferences (Table 2). Throughout the recording, participants laughed, made jokes, and were contemplative. To protect the confidentiality of participants, some preferences presented below are purposely vague.
Me & My Wishes Modules and Exemplars.
Note. LTC = long-term care.
The first participant (P1) focused on the importance of her independence and her family and grandchildren. Unless she asked for help, she preferred to take care of herself. She talked about her passion to “help people” and her desire to engage with others, even at EOL. P1 frequently visited friends within the LTC community and stated that if she were sick or in her final days, visitation from others (e.g., family, friends, church members) would be important. She also expressed that family presence was not essential at time of death. “Don’t expect family to be with me when I die as they are now . . . they keep in touch, come see me . . . .” P1 was adamant about some preferences (e.g., tube feeding, life support) and reported that her daughter (whom she would want to speak on her behalf) “knows” her preferences, “she knows all about me.”
The second participant (P2) often related her preferences to her experiences as a caregiver. When working at the hospital, she recalled a woman who was terminal and begging for morphine. “The doctor wouldn’t give it to her. I’ve never forgotten that. His reasoning was she’ll be addicted. Addicted for how long?” When her husband was in his last days, she reported going to the drugstore to get him some pills prescribed by the doctor. “He didn’t say what they were for. But I knew what it was. It was to ease him out. It helped.” These stories were conveyed when talking about her preference for pain medication. If there was a need, she stated she would want medication: “I think anything to control the pain.” When asked what her son (the person she wanted to speak on her behalf) knew about her wishes, she said, “I don’t know what he knows.” She reported not having conversations because her son “just comes down for the weekend.” P2 was specific in her wishes about cardiopulmonary resuscitation (CPR), tube feeding, and intravenous (IV) hydration, and life support. P2 stated, “And that is something I will discuss with my family—that needs to be said.”
Both residents responded positively to viewing their edited video. They thought the videos would be “good” for family or staff to hear about “my preferences” and did not feel that any topics or questions should be omitted. One stated, “I’m proud of how it came out.” Initially, one resident was ambivalent about viewing her video but became engaged once she started watching, “I’m having a hard time thinking that is me. You still think of yourself as a young woman.” She also laughed at the jokes she made in the video. Residents did not have specific suggestions for how to use the video in their care, but both conveyed the value of the video by stating, “important for people to know how I feel about God,” “I’m going to send it home with my son,” and “I wish there had been something like this for my mom.” Both residents referred to current and past experiences with other residents in their videos, which provided insight and understanding of their preferences.
We also met with the two staff members of the PAR team to obtain feedback about the videos. They responded positively, saying “loved it” and “insightful.” One stated, “I wish I had a video for everyone.” Staff PAR members felt viewing the video was time well spent and recommended viewing all or parts of the videos in care conference, staff training, and using the videos to assist with educating family members or advocating for resident wishes.
Discussion
Overall, we learned that residents valued creating and viewing their personalized video. Sharing videos allowed the PAR team and residents to reflect on how they could be used. After viewing their videos, both residents felt the video was reflective of them and continued to agree with stated preferences.
Because developing person-centered videos is relatively new, literature to compare with our findings is sparse. Some elements and potential challenges of MMW are similar to elements (e.g., facilitate conversation about values) and challenges of dignity therapy (DT)—a psychosocial intervention for people nearing end of life. Despite the opportunity to interact with someone, reminisce, gain new understanding, and enhance communication, some family members of nursing home residents engaged in a DT intervention expressed concerns (e.g., unpleasant memories) about reading the DT document (Goddard, Speck, Martin, & Hall, 2012). Examining family response to the MMW videos is planned. Feasibility issues associated with implementing DT may pose similar problems for MMW—especially the inability to recruit and retain patients with serious illness despite high acceptability rates of the intervention from patients and families (Fitchett, Emanuel, Handzo, Boyken, & Wilkie, 2015).
The purpose of MMW is to support culture change and for residents to have an opportunity to talk about their wishes, to facilitate conversations with staff and family about resident preferences, and ultimately to honor resident wishes. We document what worked well and raise questions/challenges for others to consider when creating and implementing resident-centered videos to facilitate communication and inform care preferences in an LTC setting.
Video Production
We had success with the logistical environment (e.g., quiet room, no interruptions) and video creation. The two residents were able to successfully create an MMW video, complete a survey and debriefing interview, and view and evaluate their video product. Residents were thoughtful in their responses and often provided context that supported their responses (Table 2). Residents communicated their preferences about care for today as well as EOL. Preferences were more in-depth than information provided on an advance directive form, and the narrative provided context for resident preferences that could potentially help inform care. The four modules offer a systematic approach to discussing, listening, and viewing residents’ preferences for daily and EOL care. MMW videos have the potential to dramatically shift care planning if used as a tool to help staff facilitate difficult conversations (Fried, Bullock, Iannone, & O’Leary, 2009). Sharing the video with multiple stakeholders allows them to receive consistent information.
For the prototypes, we used professional equipment (e.g., fluorescent lamps, digital camera), which is expensive and may not be sustainable or necessary. For our feasibility study underway, we purchased a high-definition (HD) video camera and tripod that can be used by individuals with little experience yet still provide high quality video. We invested in high quality audio to ensure resident voices could be heard and are assessing less expensive and less intrusive lighting than we used in the prototype project. Finally, secure electronic storage is an important consideration. We recommend using a unique ID if accessing a secure server or an encrypted laptop.
We have identified and applied editing criteria. The formative process was necessarily longer than ideal. Clear processes and decision rules are important to minimize bias in editing. In our feasibility study, we are assessing reliability of these criteria and utilizing an advisory panel to help guide us as issues in editing arise. The feasibility study will also allow us to better gauge time to edit videos and staff time to view videos.
Challenges and Uses
Two key challenges need to be considered and addressed: the possibility that resident preferences might change over time and the resources required to produce and view videos. First, we recommend documenting the frequency and type of changes in resident preferences over time and to explore how best to document change. We will begin to examine change over 90 days in our feasibility study. Second, we recommend engaging with LTC settings to efficiently create and meaningfully use resident videos. Our staff partners were concerned about the time needed to view the videos yet felt that the time spent would be beneficial. In an opinion piece, Dr. Angelo Volandes recommended that videos be used to record advance directives despite critics’ concerns about a video being too long or potentially outdated; he noted that these concerns also apply to paper forms (Volandes, 2015). We recognize that alternative ways to create and share MMW videos may be essential to their long-term use. Individual modules could be viewed separately instead of viewing the video in its entirety. Different platforms (e.g., iPad, web-based) that can still help facilitate conversations about resident preferences yet reduce video production challenges such as editing can be explored. Future work should examine the potential for embedding videos into electronic health records.
MMW videos allow residents to reflect on their preferences, so changes in the preferences may be a natural part of the process. In-depth conversations about preferences are uncommon and uncovering differences in understanding of resident preferences among residents, family, and/or staff can be a stimulus for conversation. Changes in preferences are not unique to videos, but a plan to manage changes and discrepancies will assist LTC staff to recognize and respond to differences and to engage in further conversations that lead to updating or clarifying wishes. For example, sharing the video in care conference would be a natural place to hold conversations and to document and make necessary changes. Future research will examine the acceptability of implementing videos into care conference and sharing the videos with family. Future research might also compare MMW videos to more traditional ways used by LTC facilities to learn about resident preferences (e.g., Physician Orders for Life-Sustaining Treatment [POLST] form, Five Wishes). It is not known to what extent these varying approaches influence staff or family’s ability to act on behalf of the resident’s preferences.
Limitations
The limited number of prototypes prevented us from obtaining detailed information about who is willing and able to create a video, resource use (e.g., time, cost), and refining editing procedures. Our video production procedures (e.g., no panning or music to influence parts of the video) avert some bias. We understand the potential for ethical issues to arise in the video production process. We are working with an advisory panel to create standards for editing, such as inter-rater reliability processes of edited content and residents reviewing and approving edited videos. Because we only included residents with decision making capacity, they could endorse (or not) their video. Future research with more participants will better address feasibility issues of MMW.
Developing and integrating MMW into care delivery is congruent with national efforts to improve conversations about care preferences and to improve person-centered care in LTC. Our results identified future challenges and indicate residents are willing and able to share their care preferences for today and at EOL. Videos also were viewed positively by PAR staff. Conveying preferences via video could lead to more in-depth conversations and the ability to provide high quality person-centered care.
Footnotes
Acknowledgements
The authors would like to graciously thank the nursing home residents and staff for their time and participation in the development of Me & My Wishes videos.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by College of Nursing Research Committee funding.