Ethical reflections on filming death in end-of-life documentaries

ABSTRACT The end-of-life documentaries that focus on natural death struggle with the question as to whether cinematic technology is able to express death as an event and whether it should even aspire to do so. In the process of filming dying people, questions of vulnerability, privacy, and empowerment become important, and each filmmaker makes ethical choices about how to approach the topic. By interviewing 14 documentary directors, using one audio commentary, and analysing 14 of their documentary films, I recognised two main approaches to filming death. Most documentaries exclude the moment of death, which becomes a private event outside the public eye. These films narrate the experiences of living people and use metaphorical means to communicate the moment of death. They respect the physical vulnerability of the dying people, and protect the viewer from potentially shocking images. Occasionally, some documentaries include deathbed scenes that confront physical aspects of dying. These films create an affective and embodied connection to death and dying in ways that invite the viewer to co-experience the process. In this article, I discuss the ethical approaches related to these two approaches through questions of consent, the films’ content, and viewer’s responsibility.


Introduction
In recent years, there has been something of a proliferation of end-of-life documentaries focusing on natural death, stories of dying people, and palliative and hospice care. The growing interest stems from the ageing population, death awareness movements, legal debates regarding assisted dying, and increased demand for hospice care. The social and cultural values related to death and dying are redefined in each end-of-life documentary. While fiction films have imagined death and dying for decades, documentary films promise to provide authentic representations of it, which might highlight their impact on people's attitudes (Head & Smith, 2016). Audience expectations give documentary films a specific relationship with truth and authenticity. While documentary filmmakers frame their stories, take aesthetic approaches, and construct expressions, they still rely on a conception of the real or verifiable (Hongisto, 2015). Recent end-of-life documentaries provide access to the realities of dying by giving a voice to the people experiencing it.
The centrality of testimonials and experiences of dying people follows a common trend in the documentary field, which Nichols (2016) has named 'dialogical truth'. Dialogical truth is constructed in the emotional and personal interaction between the filmmaker, who becomes a 'collaborator and confidant', and the filmed subject, whose personal voice the viewer listens to. The dialogical approach has complex relationship with the real, because unlike other documentary modes (e.g. expository, observational, participatory, or reflexive), it does not expect to reveal a certain truth, but enables an open-ended understanding of verifiable experiences. (Nichols, 2016, pp. 82-84.) In other words, documentaries explore different realities and make propositions about the potential world. This binds ethics integrally to documentary processes (Hongisto, 2015).
All documentaries raise ethical questions about how filmmakers represent their main characters (Plantiga, 2018a). The concept of character stresses how all films are constructed representations guided by various narrative choices. While I recognise the same processes, I use the concept of filmed subjects, which directs dialogical attention both to the filmmaker's active choices and to the agency of the participating subject. The ethical questions related to these dialogues are critical in end-of-life documentaries. In recent years, documentary representations of dying people have caused controversies about whether these representations exploit these people's vulnerability and privacy (Armstrong-Coster, 2001;Gibson, 2011;Hakola, 2013;Harper, 2009;Kendrick & Costello, 2000). Other discussions have challenged the desire to hide representations of dying people. For example, Horne (2013) notes that in a large photo exhibition on death (over 8000 photos) the dying people remained absent, excluding them from visual death culture. In the case of documentary film projects, many have argued that dying people have suffered from this absence and social position of victimhood, whereas participating in filming has empowered them by creating meaningful societal engagement (Fox, 2011;Haraldsdottir, 2017;Hardie, 2016;West, 2018). These contradictory claims raise a question whether the absence of representations of death is about protecting dying people from public gaze, or about protecting the public from the uncomfortable reminder of mortality.
In most end-of-life documentaries the focus is on the process of dying and the moment of death is excluded, emphasising it as a private and invisible moment that should be kept out of public sight (Elsner, 2020;Malkowski, 2017). Yet, occasionally, some documentaries include deathbed scenes. Regarding these narrative choices, the scholarly discussion has focused on the liability of the filmmakers and whether their filming techniques encourage audiences to use their viewing experiences for greater good, such as increased understanding of mortality (e.g. Nichols, 1991;Sobchack, 1984). This liability discussion implies that because all mediated real-death events are meant to be looked at they can invite morbid curiosity or even fetishism (Gibson, 2011). Consequently, the filmmakers are expected to enable and support the ethical use of their material. In this article, I approach these varied ethical strategies by analysing the films and by examining the interviews with the corresponding filmmakers. I argue that end-of-life documentaries do not create a homogenous field, but their creators utilise various ethical strategies when filming death and dying, and either showing or not showing death scenes.

Materials and methods
This study drew from two types of material. First, I analysed how the moment of death was engaged in 13 end-of-life documentary films. These films tell stories about people dying of natural causes, their dying processes, and thoughts as well as emotions at the end of life. All documentaries filmed people who were in hospice care. Second, I explore my interviews with the directors of these films (14 directors). The interviews were semistructured in-depth discussions, which were recorded and transcribed. All interviewed directors consented to the recordings and being identified by their name and documentary film in the data. While the interviews included several themes, one focus was on the directors' views about showing or not showing death scenes. In addition, I used one DVD audio commentary instead of interviewing one director who had died before I did the interviews. In the commentary, he discussed similar themes to other filmmakers. This material from 14 films and 15 film directors is listed in Table 1.
I used thematic qualitative close reading for both sets of material. I focused on the formal expressions through which the filmmakers communicated the deaths of their filmed subjects (whether they showed the moment of death or communicated it by telling, metaphors, or through others' grief). From the interviews and audio commentary, I focused on when the directors discussed showing or not showing death and their ethical perspectives on these narrative choices.
Of the 14 documentary films, five show a moment of death. The films that avoid the moment of death -Before We Go, Griefwalker, Helen's Story, Life before Death, Little Stars, Looking Death in the Face, Marika's Passing, Seven Songs for a Long Life, The Perfect Circletell the stories of dying people before their final moments. The directors highlighted that they preferred to focus on living people and their thoughts about dying, and to use metaphorical language instead of invading the privacy of the moment of death. The films that included deathbed scenes -Dying at Grace, ISLAND, Living while Dying, Love in Our Own Time, Prison Terminal: The Last Days of Private Jack Hall -were physically oriented and these filmmakers wanted to provide access to the dying process in a way that would demystify the experience. The filmmakers brought up different perspectives on ethical concerns about filming death. First, they discussed their relationship with the filmed subjects, the dying people. The relationship required trust and intimacy, and culminated in consent to (continue) filming. Second, they considered how content and style supported the ethical approach to documentary. Third, they evaluated the viewer's role in the ethical process. In the following, I discuss how these three elements -consent, content and form, and the viewer's responsibility -were justified in the filming strategies of either excluding or including the moment of death.

The question of consent
In the documentary process, filmed subjects' informed consent is the bare minimum legal requirement for ethical filmmaking. All interviewed film directors agreed on the importance of consent when filming the end of life. The dying people needed to be able and conscious to give their consent to the filming. The directors saw that the sensitivity of the topic added complexity to the usual consent process. To be on the safe side, they wanted to add legal consent from the dying person's family and healthcare institution even when these were not included in filming. To make sure that directors were not pressuring anyone in a vulnerable situation, the care staff were often asked to be present when the patients were giving their consent. For example, Claudia Tosi recalled, 'the agreement with the hospice was that I could film everything I wanted, but I was always to respect the wills of the patients. So the first no is a no. I could not go on asking'. In some cases, the filmmakers even trusted the healthcare staff to find willing participants. Mike Hill felt that 'when the idea comes from the trusted health professional, I find that most people and most families like to share their stories and like to be heard'. Winston (1995) has argued that documentary makers should never use legal consent as a release from ethical liability. Instead, consent should be part of documentaries' truth-telling ambition, where filmmaking follows the institutionalised practices of the field, including ethical standards and constraints (Maccarone, 2010). When documentaries are considered as practices, this includes ongoing discussion between filmmakers and the filmed subjects, or as Maccarone (2010, p. 199) writes, 'to truly inform a potential subject would take more time and would require discussion, opportunity to ask questions, and a noncoercive atmosphere'. Thus, ethical use of consent should avoid the practice of signing a one-time release form, and focus on processual relationship.
Among the end-of-life documentary makers, this was the widely shared understanding. For example, Hill's documentary Life before Death cuts away from a woman on her deathbed, among her family members and with her palliative care doctor, before the moment of her death. Hill had filmed the moment, but he cut the scene on the request of the healthcare professionals. Thus, respecting consent included discussions along the way, and not only with the dying person, but with other people involved. Hill's decision shows that in addition to legal consent, the filmmakers were empathetic to processual consent. Processual consent refers to ongoing interaction between the filmed subjects, who have the right to withdraw from filming at any time, and the filmmakers, who regularly discuss how they want to be filmed and portrayed. Hill discussed processual consent: When you tell stories in this space [hospice], it is one thing for people to consent at the time of the filming. But we are very flexible, enabling participants to change their mind after filming. So, even if you got the informed consent, a written consent at the time of production, things change. (Hill) The option to withdraw or discuss boundaries was particularly significant, because the filmmakers were aware that the filmed subjects were not be able to see the film (which was often finished after their deaths). Thus, they needed to trust the filmmaker to be true to their experiences. Similarly, West (2018), who has studied end-of-life documentary processes, argues that people who decide to make their dying processes public have deep faith in the media's capacity to do justice to their experiences. At least in the cases of these films, the filmmakers held this trust in high esteem.
Unlike a fictional character, a documentary filmmaker can harm a real person. Consent is part of the recognition of the implications of privacy and dignity, and as Plantiga (2018a) argues, these should mean more than legal permissions for filming; they should be a form of care, or ethical obligations that aim for honesty, sensitivity, and respect. In the end-of-life documentary filmmaking, the discourse related to filming as a form of care was striking. Jorge León formulated that when filming dying bodies, they 'had to be careful, we had to take care. This I like, this idea, being both careful and taking care. Because there is a danger if you are not careful, so you care'. The filmmakers' understanding of care conveyed honest and authentic portrayals of the experiences and desires of the dying people, which emphasises their understanding of dialogical truth. These people had an important role in affecting the representations of (their own) death and dying. Because the filmed subjects have their own reasons to participate -ranging from personal to societal -Nash (2011) argues that the consent should be considered as a dialogical relationship, not a passive submission, where potential trust and openness conveys to the viewer.
The filmmakers' own understanding of dying and death were also part of this dialogue, and it influenced what they saw as caring and sensitive. In most cases where the films excluded the moment of death, the filmmakers had not even filmed this moment: they had decided in advance that it was not what they wanted or considered decent. Privacy issues had a top priority. For Paul Davidson and Barbara Gibb, it was an ethical decision not to film the last days of their main subject; instead, they wanted her to rest in peace. The right to privacy extended to family members. Tim Wilson was given the option to film the death of one his subjects, but once he recognised the vulnerable and emotional state of one of the family members, he decided 'I did not want to show something that was so upsetting'. For him, death morphed into a private moment.
These filmmakers drew a distinction between human presence and technological recording. For them, the film camera and related technology would have diverted attention from the dying person and fragility of the situation. The technology could distance observers and participants from a human experience and invade privacy. Claudia Tosi stated that if someone was dying while she was filming, she would put the camera down and be with that person. In other words, it would be decent 'to connect with the person instead of having some equipment between you and the person'. Similarly, Kiti Luostarinen argued that even if the moment of death had presented itself while she was filming, she would have focused on the person and left the camera behind. These viewpoints resemble scholarly arguments that media technology always fails to capture the liminal dying experience that reaches beyond representation and technology (Malkowski, 2017;Sobchack, 2004), which prioritises the lived moment.
Some directors stated that they would have filmed a moment of death only if the person would have requested it. Even in these cases, they might have been reluctant, but they would have followed the desires of their filmed subjects and in this way, been true to the dialogical truth of the process. Kiti Luostarinen, for example, did not film a moment of death, but she included a scene with a dead main subject who had requested this scene in order to show that death is a normal part of life. In the scene, the deceased woman is on display in the hospice viewing room. In a close-up, she looks peaceful while film director's voiceover describes how small she looks under the sheets. The viewer can see how Kiti's hand gently caresses her cheek. The camera lingers on the scene and only the sounds of Kiti's steps when she is walking out of the room tone in with the quietness of the goodbyes.
In the films that included death scenes, the dialogical process was highlighted and filming these scenes was included in the concept and consent from the beginning. In case of Cathy Zheutlin, a friend had contacted the filmmaker and asked her to film the whole process. Zheutlin argues that the dying person told her 'I trust you as an artist, and I really want you to film.' With permission from the dying people and their families, the film directors did not question showing death. For Steven Eastwood the most important question was what the people with terminal illness wanted: 'The hospice movement is about enabling a person to die in the way that they wish, and this includes a person who wished a filmmaker to be present as their life ends'.
Due to processual consent, the question remains whether anyone can be sure that the filmed subjects did not change their minds at the very end. On their deathbeds, people are typically unconscious and drifting away. Tim Wilson, who at the last moment decided not to film the moment of death, asked: 'how do we know what goes on inside the mind of someone in the last stages of their life even if they appear to be compos mentis apropos of their relationship with other people?' The film directors who had consent to film the moment of death, and who trusted the dialogical agreement, also brought up this question.
Edgar Barens and Tom Murray filmed deaths that did not end up in the edited version. In Barens' case, the person who gave him permission to film was in a weak condition and did not have time to sign the release form. This death was not peaceful, but agonising. In the end, Barens cut this death from the final version, because he wanted to make sure that the film would not take advantage of a vulnerable person, and that this death would not horrify the viewer. Murray excluded the deathbed scene because he lacked sufficient material. The viewers would not have time to get to know the person, and he wanted every death to mean something for the viewer: 'I wasn't going to show something just for the purpose of showing it.' These decisions respond to the criticism according to which lack of contextualisation and emotional engagement can lead to ethically indifferent viewing of real-life deaths (Gibson, 2011, pp. 924-925). Thus, even when death scenes were seen as important experiences and moments, all directors wanted to place them in context and in the narrative arc. They wanted to make sure that they were not filming death for its shock value, but to mean something.
The documentaries that included deathbed scenes utilised a third type of consenton-screen consent that is included in the film narration. In these scenes, the dying person addresses the camera and confirms that they are aware of being filmed. In a rather mundane scene in ISLAND, an elderly woman is talking on the phone. She tells the caller that she needs to go because 'Steven is filming here'. The scene is not about the importance of the phone call. Instead, it communicates that the subjects are aware of being filmed and give their consent to this in dialogical relationship. For Steven Eastwood, these scenes ensured that 'the viewer knows they are invited to see and share in the lives of those experiencing terminal illness, and this helps to avoid concerns of voyeurism'. Similarly, in Allan King's Dying at Grace, a dying man confirms to the camera that he knows about the filming. In the audio commentary, King confirms that they included these scenes on purpose, because these moments confirm consent by acknowledging and making visible the presence of the film crew.
West (2018) argues that embedding the question of consent to the film is one way to lessen potential accusations of exploitation, because it focuses the viewer's attention on the agency and empowerment of the dying person, instead of on power relations between filmmakers and filmed subjects. On-screen consent also allows the filmmakers to claim that their 'visual representation of dying is an ethical response to a culture that denies death' (West, 2018(West, , p. 1490. Often, on-screen consent appears as a natural part of the interaction that creates dialogical truth, which aims to create an authentic, honest and ethical approach, even if the same scenes are the results of an editorial process. Rothwell (2008) argues that this kind of apparent transparency can turn attention away from the editorial process, where filmmakers still have power to frame their stories in their preferred ways (and potentially differently than the filmed subjects imagined). Thus, while on-screen consent is a useful tool to persuade the viewer about the ethical approach, it does not erase ethical questions and risks from the documentary films. Despite various levels of the consent process, where the formal release form is legal consent, and processual and on-screen consents are ethical processes aimed respectively at the filmed subjects and the viewers, how filmmakers edit and frame their films is still an ethical issue.

Ethical implications of narrative viewpoints
In ethical evaluation, the content and form of any film are significant. Viewers of documentary films expect that on-screen events correlate with the actual events, and that they are able to witness recordings, not image and sound manipulations (Nichols, 1991). In end-of-life documentaries, particularly the moment of death is an event that inspires discussions about ethics -whether to show the moment and how to represent it.
The directors who excluded the moment of death often argued that a story about dying does not need the moment of death to be affective. Claudia Tosi, Kiti Luostarinen and Peter Wallenius argued that the moment of death is not what makes death a meaningful experience, and as such, it does not make the narration powerful. Instead, they sought meaning from the last days of the dying people and from how they gave meaning to not only their deaths, but their lives. In contrast, Allan King and Steven Eastwood took those moments as their starting points. King wanted to explore what it physically feels like to die. He marginalised care processes, meanings of death, and potential afterlives, and emphasised physical and emotional aspects of the process of dying. Similarly, Eastwood wanted to show death as a physical experience. Both avoid telling biographical stories about filmed subjects, making their deaths, not their lives, the core of the story.
The slightly simplifying comparison between life and death narrative perspectives enables interesting questions about death and individualism. For Malkowski (2017) individualism explains why the moment of death is often absent from end-of-life documentaries. She argues that the modern understanding of good death equals customised and unique dying. This understanding guides filmmakers to focus on personal stories. Furthermore, on their deathbed, the often inactive dying body overshadows the personality and diminishes individuality. Thus, recording the moment of death could 'deflate the idea of death as heroically individualized' (Malkowski, 2017, p. 104). Indeed, directors who excluded deathbed scenes wanted to foreground the people and uniqueness of life. Peter Wallenius, for example, opted out of deathbed scene because drifting off appeared to be the opposite of drama that defines both narration and life, and Paul Davidson argued that 'it was not the death moment that was interesting. It was the nine months of living that you got before dying'. In these cases, the film directors wanted to make the dying people visible in a culture that often marginalises their experiences.
Individual empowerment is a key factor in the Seven Songs for a Long Life, where hospice patients choose and perform songs that are important to them. Between singing performances, they tell the viewer stories about their life. In the process, director Amy Hardie refused to define her filmed subjects through death. Instead, she wanted to show the dying people 'being alive right until being dead'. There are no deathbed moments in her film, but the end credits are dedicated to the deceased participants. The solution celebrates the individual lives, not deaths, of the filmed subjects.
An increasing number of documentaries have embraced deathbed moments, and these films have a complex relationship with individualism. As its title implies, Living while Dying takes the 'living until the end' approach, and director Zheutlin wanted her film to encourage viewers to embrace life. Yet the film includes one deathbed scene, in which a terminally ill man takes medication to end his life in the presence of his family and friends. The death is subtle, peaceful, and happens in a supportive environment. Malkowski (2017, pp. 125-126) argues that scenes like this support the idea of heroic death because they also 'frame terminal patients as courageously individualistic: opposing social norms against suicide, these patients take control over their deaths, making active and commendable choices to die without pain at a time they designate'. Even deathbed scenes can support an individualistic understanding of meaningful life and death.
In contrast, the physically oriented documentaries Dying at Grace, Prison Terminal, ISLAND, and Love in Our Own Time consider active dying scenes among the most meaningful. Malkowski (2017) sees these scenes, where dying people inactively and often unconsciously lie on their beds, as betraying individualistic ideas of a good death. Yet, the directors gave more complex functions to the deathbed scenes. They wanted to challenge individualism rhetoric and to show that death is a universal experience and natural part of the human life. They wanted people to know what to expect from the inevitable moment of death. For Edgar Barens, the universality of this moment was also a political choice. In Prison Terminal, the story about terminally ill dying inside prisons, death was a humanising element. I thought the biggest common denominator for everybody is to see somebody to die. I know it sounds kind of ruthless, but I thought that if they see someone die, it might remind them of their father, or grandfather, who they saw pass away. It also brings it all down to the same level. Also, I was able to show the prisoner's family who loves this person despite their flaws, show the path to a grieving process as the person dies. That could be so powerful. (Barens) These filmmakers challenge the view that individualism is the only way of understanding good death; instead, they prioritised the ability to experience something not uniquely individual, but uniquely human.
Documentary deathbed scenes use similar structures. The dying people are lying on their beds. The approaching death is visible in their glossed gaze, difficult breathing, and hollow, pale face. The camera stays with them even when they are inactive, recording their last breaths, excluding everything else going on around them. In ISLAND, for example, the deathbed scene takes seven minutes. The still camera centres on the dying man and records each laboured breath until there is none left. After the silence fills the air, the image remains still, until a nurse comes to the room, steps in front of the camera and notices that the man has died. The scene takes place between the dying man and the vigilantly, independently, recording camera by the deathbed without filters or active agency to (re)frame the moment. In fact, after some 36 hours of continuous filming, the filmmaker had momentarily fallen asleep when the moment of death occurred. While placing of the camera relies on the filmmaker's intentions, it lessens his role when the scene momentarily prioritises the empathic and embodied link between the camera, the viewer, and the subject (e.g. Nichols, 1991, p. 86).
Corporeal aspects build interconnectedness into human experiences (Elsner, 2020), and invite the viewers to affectively respond to the situation. In affect theory, attention moves from cognitive meaning making (speech and texts) to materiality and embodiments (Liljeström & Paasonen, 2010;Pedwell, 2020). Similarly, in the documentaries focusing on the moment of death, affect and embodiment become meaningful ways to understand and experience death and dying. Close-ups, for example, highlight corporeal intimacy, and serve as 'a technique for connection and understanding' (West, 2018(West, , p. 1489. In embodiment processes, the filmmakers highlighted that intimacy, not distance, became the guiding ethical choice. In the death scene described above, intimacy between the viewer and the image (the dying person) invited empathy and made the moment powerful and meaningful.
The ethical question remains: can we be sure of the dying person's continuing consent? Aaron (2014) emphasises that in the moment of their death, a person is unable to give their consent because they stop knowing that they are viewed, and at the same moment, viewing gains potential for exploitation because the viewer cannot be sure that permission is given. The filmmakers who focused on a life perspective validated their ethical approach by arguing that by leaving out the moment of dying they could be sure that their filmed subjects were aware and voluntarily participating in creating their legacies. These directors argued that avoiding physical details related to dying was a question of ethics and respect, as well as a method of avoiding any signs of voyeurism or shock values.
The directors who filmed death scenes are more open to Aaron's criticism related to privacy and voyeurism. The criticism prioritises viewers rights and responsibilities to ethically evaluate the deathbed scenes, and by doing so, they seek permission to look at someone dying. Sobchack has argued that filmmakers have tried to give this permission with 'a humane gaze', which means that in addition to on-screen consent, the death is recorded with a steady camera, careful framing, and long shot duration. These filming techniques aim to ensure that the camera is not voyeuristic (or fetishistic), but invited and welcomed to witness the death. (Sobchack, 1984). Also, filmmakers use narrative solutions to justify these scenes. They avoid random death scenes and include deaths of those who the audience gets to know. This invites empathic bond and emotional engagement (Gibson, 2011), which are often seen as a key to ethical filmmaking and viewing (e.g. Plantiga, 2018b). Thus, while some of the documentaries included deathbed scenes, the filmmakers use techniques of intimacy and embodiment to make the scenes meaningful and ethical.
While the challenges of privacy remain, the filming solutions related to deathbed scenes emphasise universality of experience. As such, these films avoid ethical questions related to heroic individuality in the face of death. Indeed, films with dying subjects who are active and living well until the end have been criticised for their misleading desire to represent 'healthy dying' (Aaron, 2014;Kastenbaum, 2004). Armstrong-Coster's (2001) research revealed that some terminally ill patients saw end-of-life documentaries as setting unrealistic expectations of what the dying process feels and looks like. Thus, while documentaries that avoid physical degeneration have an easier task to convince the viewer that the filmed subjects are aware of the filming process and have wanted their stories and legacies to be memorised, these narratives raise other ethical challenges. In other words, both narrative solutions -focusing on life or death -have their own ethical issues, which leads us to the question of responsibility.

The question of responsibility
Filming or looking at death is always a moral and ethical choice, even if both break down the cultural taboos around death, as Sobchack (1984) argues: while viewers evaluate whether filmmakers have responsibly dealt with the topic, they are also responsible for their own choice to watch others dying. End-of-life documentaries are not hiding their theme, and as Egdar Barens argues, in hospice films the expectation is that 'someone is going to die in it'.
All the interviewed documentary makers had considered how viewers might react to their film about a culturally challenging topic. The filmmakers who excluded the deathbed scenes wanted to be considerate. They did not want to alienate audiences with gruesome images of the dying process or suffering. For example, Barbara Gibb argued that leaving (potentially shocking) physical decline out and adding uplifting moments of joy gave balance that made the emotional topic of the film approachable and easier to watch. These choices that balance complex emotions, such as fear, with hope and positivity, resonated with the viewers. For example, the review of reception of Seven Songs for a Long Life revealed that many viewers applauded the film's life-centred approach (Hardie, 2016, p. 263).
For the same reason, metaphors are used extensively in these documentaries: they make difficult events comfortable for the viewer. Mike Hill noted that when the woman filmed in Life before Death was about to die, the camera cut away from the scene and they used metaphorical imagery 'to not have to show it'. Similarly, Amy Hardie explained that: I wanted the film to allow the audience to get in that place in their own heads where they could bare that confrontation [with death]. I realised music was one way to let me do that. Because singing is so pleasurable that it lets you get over the discomfort when thinking about death. (Hardie) Thus, when end-of-life documentaries want to avoid deathbed scenes, they tend to communicate death through metaphorical images, such as burning candles or nature scenes (Hakola, 2013). In Griefwalker, for example, an image of a dying woman floating off into a mist signifies one subject's death. Director Tim Wilson explained it being a beautiful way to solve the issue, even if it perhaps romanticised death a bit too much.
However, metaphors had also other functions than protecting the viewer. They bridged over the cinematic mediums limitations to reach the multiplicity of the moment of death. Wilson argued that moment of death might be one of the shortcomings of the medium: 'the sound alone and the picture alone are not going to tell you about all the other senses, other presences and disappearing presences and vibrations in the room'. Jorgé León, too, argued that cinema can only represent, not mediate, death. For him, it was more interesting to study the meanings we give to death through representations. Thus, in Leon's film Before We Go, the subjects are filmed performing goodbyes in various ways, from waving to the camera to giving last bows on the stage.
Although metaphorical imagery and emotionally balanced narration are often the strengths of the documentaries, these solutions have been criticised. Malkowski (2017), for example, argues that deathbed documentaries often allow viewers to remain at a distance and make sure that they know they are watching someone else dying (without the need to identify). In contrast, the documentaries with deathbed scenes make it impossible to distance oneself from the death of the person. The ethical reasoning is to encourage empathy and co-experiencing the situation in a way that touches the viewer.
Steven Eastwood argued that while we are used to fictional on-screen death, nonfictional deaths are often considered to be upsetting, sensitive, and potentially unethical. For these reasons, many other directors soften the message with metaphors and symbolism, and he wanted to peel off those added layers. I wanted to enable the viewer to feel comfortable sharing in the event of the end of a life, without the protection of veils and metaphor. There is no sun going down. There are no polite symbols to reassure the audience that everything is going to be okay. That is what metaphor does; it suggests meaning, a purpose for everything, but moreover, that someone else is managing your experience. [. . .] We can trust ourselves to encounter dying directly, outside of the filters of metaphor and euphemistic language. (Eastwood) For Eastwood, refusing metaphorical explanations and creating the potential to surrender to death was an ethical solution.
Scholars have debated whether documentaries are able to do this. Sobchack (1984) argues that the viewer can only create an embodied connection with an active subject, and because the person loses their subjectivity and activity in the moment of death, the cinematic technology ultimately fails to provide the required connection. On the other hand, posthumanist theories have challenged the assumed disconnection between the subject and the dead bodies, and they claim that because the strong connection to subjectivity remains, dead bodies have such a strong cultural and taboo power (Edwards, 2018).
The end-of-life documentaries tried to solve this dilemma in many ways. Love in Our Own Time refocuses from the dying subject to others' experiences. In a cycle of life, the film cuts from the cries of newborn babies to the deathbed of an older woman. The woman is lying on the bed, yet the focus is on her grieving family. Even when the camera centres on the dead woman, the viewer can see a hand caressing her. For director Madeleine Hetherton, the family's reactions were more powerful than the actual death: 'it was a very unique kind of grief that we could watch him [the husband], and grieve with him'. When the family becomes the emotional focus, they are again able to consent to filming. Although death is not metaphorical here, Malkowski (2017, p. 107) argues that scenes like this provide similar 'cathartic release' that 'lets us keep a safe distance from the more difficult revelation implicit in the bodies dying on-screen: that in time we will mimic them, too'.
The studied documentaries do include moments where the camera does not turn away from death. These moments challenge Sobchack's (1984) argument that the moment of death breaks the connection between the viewer and the dying subject. The key is in the slowness of these scenes, where transition to death is not dramatic, but subtle. Edgar Barens and Madeleine Hetherton emphasised that in the slow process of natural dying it is difficult to recognise the actual moment of death. Instead, watching the dying person is about watching something disappear. In both Prison Terminal and Love in Our Own Time, the camera appears to be recording the moment of death by the deathbed. Yet, directors Barens and Murray confess that whereas the viewers assume that they have witnessed the moment of death, the scenes start a few seconds after the moment. In Prison Terminal, the scene had to shorten the long death to fit it into the narration, and in Love in Our Own Time, they wanted to make the grieving family the emotional focus. Because there is no exact recognisable moment of death, the connection between the viewer and subject can cross boundaries. The intimate way of filming these moments encourages the viewers' embodied human connection.
While the embodied deathbed scenes refuse to protect the viewer from an emotionally, ethically, and culturally difficult moment, Aaron argues that this embodied connectivity can provide a key to the viewers' ethical gaze. Using Dying at Grace as an example, she argues that close-ups, caresses, tears, and other sensory details create an embodied connection that can linger and enable the viewer to co-experience loss, if not death itself. This creates relationship between the people on-screen and off-screen, making the dying people active subjects (not passive objects) who know that the film is made for the public. As such, the dying people donate their last moments to others. (Aaron, 2014.) The film directors, regardless of whether they included or excluded the moment of death, also used gift-giving rhetoric. For example, Hardie recalled participating in filming as a gift to audiences: I see it as a gift, a very generous gift she [one of the main subjects] offered the audience. We had filmed together for years, two or three years, and she understood totally that she was singing to an audience. I really felt she was sort of communicating to the audiences about the place she had been, where many people have not come back from [coma], and it felt tremendously generous to me. (Hardie) A metaphor of gift contains conscious action of giving and an understanding of the receiver. This rhetoric is ethical by nature; it highlights the dying people being aware of being watched by the film audiences. Consequently, the viewers could trust this permission, and focus on being responsible for their own responses and reactions. This connects to the end-of-life filmmakers' ethical goals. They all emphasised that they were not seeking to shock, but to force the viewers to confront their own ideas about death and their fears about dying people. Thomas (2012) noticed in his reception study that if the documentary allowed distance between the viewer and death event, the viewers focused on evaluating how the filmmakers and the filmed subjects handled the sensitive issue, and when viewers became emotionally invested they started to question their own reactions as well. This supports the notions that emotional engagement is a powerful tool to encourage ethical viewing (Gibson, 2011, p. 931;Plantiga, 2018b, p. 249). Although the viewer's ethical responsibilities and uses of mediated materials fall outside the scope of this article, from their behalf the filmmakers used filming techniques and narrative solutions to ensure that the viewers can appropriately look at the death of others. By doing so, they entrusted viewers to use their experiences constructively beyond the documentaries. They wanted their films to educate the audiences about death, to show how to encounter dying people, and to raise awareness of hospice care.

Conclusion
End-of-life documentary makers continue to struggle with whether cinematic technology can express death as an event and whether it should even aspire to do so. Public discussions about this often start from the assumption that all end-of-life documentaries function in a similar way when it comes to narrating death, treating dying people, and representing the moment of death. Yet, based on the interviews and the content of the documentaries, I recognise two main approaches to the topic of death and dying. Some documentaries focus on metaphorical narration that brings the experiences of living people to the fore. These films are about managing the approaching death: they discuss cultural and personal expectations and meaning making related to death and dying. Other documentaries confront the physical and affective aspects of dying: they focus on what death is and does to a person. However, I should note that these two types do not create clearly defined categories, but rather a spectrum on which different films emphasise different metaphorical or embodied approaches.
Both approaches apply different ethical solutions and invite different ethical criticism. Filmmakers who took the metaphorical approach highlighted the need to protect both the privacy and vulnerability of the dying person, as well as to protect the viewer from gruesome images. By providing an interesting narrative, they gently invited the viewer to think about mortality, although this approach has been criticised for providing the viewer with too much distance, and of painting an at least partially misleading picture of the dying process.
Filmmakers who took the embodied approach highlighted that people needed to see what death looks like to be less afraid of it. They believed it was ethical to make physical aspects of dying visible, because this would increase knowledge of dying instead of romanticising it. In this view, the embodied connection was considered to create an ethical relationship between the dying people and the viewers, because intimacy would necessarily be moving. But can we be certain that the invitation to witness stands until the last minutes, and that we are really watching the scene to better ourselves, not to entertain ourselves? Thus, in these moments, the viewers' task is to evaluate both their own reasons for watching the documentary, and the filmmaker-subject relationship in order to be convinced that the filmmaker is respecting the dying person's wishes (West, 2018).
There is no way (or need) to decide which one of these approaches is more or less ethical. Instead, we can turn back to the question of truth and documentary. Documentary films lack access to an absolute truth, but dialogical truth can play a key role in evaluating their ethical practices. The documentaries need to stay true to the image of death and dying they have created through the relationship between the filmmaker and filmed subject. Cultural context, including the filmmakers' underlying assumptions and understanding of audience's expectations, informs these relationships. By discussing aims and filming practices with the filmed subjects, dialogical truth about death and dying can take shape. In this way, the viewer could be assured that although we see similar deathbed scenes in different films, the decisions to be in those moments are not only personal and individual, but also address the universality of the dying experience.