Nursing Manuscript

Connectedness at the End of Life Among People Admitted to Inpatient Palliative Care

American Journal of Hospice & Palliative Medicine® 1-8 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114554077 ajhpm.sagepub.com

¨ hle´n, RN, PhD1,3 Cecilia Ha˚kanson, RN, PhD1,2, and Joakim O

Abstract The significance of connectedness for well-being is well known. At the end of life however, illness and body decline may challenge a person’s ability of staying and feeling connected. The aim of this phenomenological study was to interpret meanings of connectedness, through narrative interviews with persons admitted to inpatient palliative care in Sweden. Results involving connectedness through the body, connectedness to, and uncanniness toward other patients, and connectedness to significant others and society are discussed. The study underscores the importance of connectedness until death. However, in inpatient palliative care this is complex. Patients can cocreate or challenge each other’s sense of connectedness through the symbolism of illness and diseased bodies. Moreover, the capability of connectedness is influenced by illness, spatiality, atmosphere, activities, and resources in the care place. Keywords body decline, connectedness, dying, palliative care, phenomenology, well-being, virtual reality

Background The significance of connectedness for well-being in illness is well known.1 At the end of life, declined body capability and troublesome symptoms may hamper a person’s ability and strength to perform and move about freely.2-4 Naturally, in these situations, connecting with society and the people within it (including significant others) becomes more difficult and more dependent on other persons taking responsibility for upholding communication and relationships. As a response to this, the hospice and palliative care tradition has emphasized supporting people to maintain communication and relationships with significant others5 and to facilitate social interaction, for example, in day care settings.6,7 Connectedness relates to the fundamental and universal human needs of belonging.8 The importance of feeling connected to other persons is strongly related to safety and basic physiological needs.9 Connectedness is, together with other concepts, also frequently reported in the nursing literature to compose 1 dimension of the multidimensional concept of spirituality. In the spirituality context, connectedness refers to God or universe, but also to connectedness with oneself, with nature or with other human beings.10,11 From a lifeworld point of view, as human beings we are connected with everything and everyone through our being in the world of meaning and relationships.12 Reviewing the literature, the multidimensionality of connectedness is evident. A more narrowed concept is ‘‘social connectedness,’’ which has been defined as the ongoing momentary affective experience of belonging, based on awareness (the sense

of being in touch and the sense of involvement and sharing) and appraisals of social relationships and interactions.13 Social appraisals may be both quantitative and qualitative in nature. Quantitative appraisals relate to the perceived extent of one’s social network and the amount of social interaction. Qualitative appraisals, on the other hand, relate to the closeness people experience in their social relationships and interactions, that is, relationships help people to feel as if they belong and being a part to play in a society. Good health, employment, and feeling safe and secure all increase people’s chances of developing and sustaining positive social networks that promote general well-being in their lives.13 Decline of body functions3,14 and distressing illness or treatment-related symptoms2 are common reasons for admittance to inpatient palliative care. Palliative care places have been described as a refuge, giving respite from both the

1

Palliative Research Centre, Ersta Sko¨ndal University College and Ersta Hospital, Stockholm, Sweden 2 Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden 3 Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg, and University of Gothenburg Centre for Person-Centred Care, Gothenburg, Sweden Corresponding Author: Cecilia Ha˚kanson, RN, PhD, Palliative Research Centre, Ersta Sko¨ndal University College and Ersta Hospital, P.O. Box 111 89, SE-100 61, Stockholm, Sweden. Email: [email protected]

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American Journal of Hospice & Palliative Medicine®

2 traditional medical system and from people15 that provides comforting care, enabling alleviation from suffering.4,16,17 This also includes being able to stay in contact with significant others, something which has been described as part of the social dimension of everydayness of being in such a care place.18 Nevertheless, like many other institutional care places, these places are rather ‘‘isolated’’ in the sense that patients who are enrolled there are geographically detached from their former everyday familiar place/space and social networks that normally give meaning to people’s lives and shape who they are. It has been described that being isolated and cutoff from meaningful relationships with others and society may intensify feelings of alienation and hinder relief of emotional and spiritual suffering.16 Accordingly, this is probably one of the most significant reasons for severely ill persons to prefer being cared for and dying in their own homes.19 Hospices and palliative care places are also rather special settings, as they often constitute the last living space in life.20,21 The dying process has been reported to bring about ‘‘seclusion,’’ which has been recognized as a form of mental ‘‘shut down’’ following illness and body decline.3 The point when dying persons withdraw from social activities and relationships has occasionally been called the ‘‘social death,’’ and this has been referred to as a fundamental and irreversible loss of selfhood.22-24 Over a decade ago, Lawton3 provided interesting insight into the relationship between the body, self, and the person, suggesting that the identity and selfhood of the contemporary Western person is fundamentally dependent upon the possession of a somatically bounded body. Using her hospice studies as a point of departure, Lawton argued that such care places can be seen as mediators between the unbounded and the bounded body, with patients being moved into inpatient care places when the surfaces of their bodies rupture and break down, and moved out again when their bodies and their integrity are rebounded, or alternatively, when they die. This social withdrawal has also been described as intensified by friends and family members when they actively withdraw, either because they believe that the person does not have the strength to or prefers not to interact socially24 or because they find it awkward to watch the more or less unbounded and declined body of a person they have known but can hardly recognize anymore.14 It has also been suggested that friends and family members, as part of an anticipatory grief process, mentally start to ‘‘shut down’’ their relationships with the dying person, that is, they behave as if the person was already gone, especially when the person is at distance, for example, in an institutional care place.24 In the palliative care literature, connectedness is commonly presented as one of several dimensions relating to needs and well-being at the end of life17,25 predominantly within the discourse of spirituality.25,26 Connectedness with oneself (bodily) and social connectedness with friends and family members have also been described as part of the alleviation of suffering related to existential loneliness.17,27 However, few studies have focused on what connectedness means at the end of life, and how the dying trajectory and care place may influence severely

ill people’s sense of and prerequisites for connectedness. Accordingly, studies are needed that contribute to enhancing our understanding of meanings of connectedness at the end of life, especially for persons who spend their last period of life in inpatient palliative care places.

Aim The aim of this study was to interpret meanings of connectedness for people admitted to inpatient palliative care.

Methods To capture meanings of connectedness from an everyday life point of view of spending the last period of life in a palliative care ward, the study used an interpretive phenomenological lifeworld approach.28 The lifeworld is the world of everydayness that is lived bodily, and through which meaning is constituted. It is a social-shared world in which people always exist and affect each other.12 The study is part of an overall research project about meaning-related aspects of the (lived) body in palliative inpatient care (see also29).

Participants and Setting Participants were selected according to the following inclusion criteria: enrolled in inpatient specialist palliative care, representation of a variety of ages, equal representation of gender, able to speak and understand Swedish, and enough strength to participate. Potential participants were orally informed about the study by their physician. Those who were interested also received written information. After this, the researcher met with the individuals to reiterate the oral information and invite them to participate. The researcher also gave information about the voluntary aspect of participation and about matters of confidentiality. Nine persons (4 men and 5 women) aged between 57 and 76 years, with various metastasized cancer diseases, and enrolled in a conveniently chosen specialist palliative care ward in an urban area of Sweden participated in the study. To this specialist palliative care ward, patients are admitted for shorter or longer periods of time; early or at the final stage of the illness trajectory. The reasons for admittance are either that the situation at home is too distressful or too exhausting for the patient and/or next of kin, for example, because of extensive bodily care needs or because the patients need to undergo or optimize symptom treatment. Many times patients alternate between being in the ward and receiving care at home, with support from the specialist palliative home care team. Thus, the specialist palliative care ward being the setting for this study, like most palliative care wards in Sweden, has the characteristics of a hospice but is not a care place only for the dying. The participants completed a written consent form, after which the first interview was scheduled. The following interviews were flexible and scheduled according to suggestions from the researcher but with consideration taken of the participants’ desire, own schedule, and present condition.

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Table 1. Overview of Data Collection.a Number of data collections (n ¼ 24)

Length of time between first and last data collection

Length of time from last data collection to death

1. 2. 3. 4. 6.

— 1, 2, and 3 weeks 3 weeks 6 weeks 3 and 5 months

1 and 5 days 3, 12, and 16 weeks 3 and 5 weeks 1 week 2 weeks

2 3 2 1 1

Participants Participants Participants Participant Participant

¨ hle´n.4 Data presented by Ha˚kanson and O

a

Data Collection Repeated narrative interviews in the form of conversations were performed from 2012 to 2013. In total, 24 interviews were performed. The number of interviews per participant (Table 1) was determined by the individual participant’s condition; each individual was followed for as long as he or she had the strength to talk and consented to participate. Two participants were able to go home for a shorter period during the study and declined to participate during their home stay. Demographic information about the participants’ age, diagnosis, and illness trajectory was gathered from medical records and from the participants themselves. The main questions for the narrative interviews were ‘‘Can you please tell me about your situation?’’ ‘‘Can you tell me what it is like for you to be in this place?’’ ‘‘Can you please describe what is important and that gives your present everyday life meaning?’’ And finally, ‘‘What does connectedness mean to you in your present situation?’’ Reflective questioning29 building on previous conversations was frequently used to promote in-depth understanding of the participants’ experiences, that is, ‘‘Last time we spoke, you told me about this situation. I have been thinking a lot about what that means to you.’’ These questions were especially focused on matters of relevance for connectedness. All participants had single rooms in the ward, and most interviews were performed in the participants’ own rooms. The interviews were audio-recorded for the most part and transcribed verbatim. Exceptions were situations where the participants did not want the audio-recorder to be put on, or when spontaneous interview conversations took place in awkward localities, such as the smoking area where other patients are present. In these situations, the participants’ descriptions were memorized as far as possible and documented afterwards.

themselves contributed by enriching, developing, or supporting the interpretations.28 The transcripts were first repeatedly read to get an overall sense of the data before being broken into clusters of related meaning content. The clusters were marked, and notes were made about their content, for example, descriptions disclosing participants’ feelings about encountering other patients. These clusters were then analyzed and interpreted in the context of the overall understanding of the descriptions (in what situations, activities, etc the descriptions were embedded), by continuously moving back and forth between the clusters and the texts as a whole. In the final interpretative step, the analyzed clusters of text were merged according to their essential interpreted meaning and thus being constitutive of 3 themes disclosing meanings of connectedness.28 Rigor in interpretative phenomenological research relates to the researcher’s being open and attentive toward the concreteness and meanings of the participants’ verbal accounts. To achieve this, the 2 researchers maintained a continuous exchange of reflective and critical reasoning about disclosure and interpretation of results. Moreover, alternative interpretations were discussed, sometimes leading to one of the researcher’s rereading and reanalyzing clusters of text with the purpose of confirming or rejecting the original interpretation. This was a mutual and transparent process, meaning that ideas and thoughts about the interpretations were shared and agreed upon before closure. Both researchers’ preunderstanding were continuously addressed and critically discussed throughout the research process, striving to be as open as possible to the data and the results.28 The analysis of data was performed without analytical software assistance.

Ethical Considerations The Regional Ethical Review Board of Karolinska Institutet, Stockholm, Sweden, approved the study prior to commencing (no. 2012/881-31/1).

Results In this study, meanings encompassing 3 dimensions of connectedness were disclosed: feeling connected through bodily touch and comforting care, feeling connected to, or uncanny about other patients, and maintaining a sense of connectedness to significant others and the society.

Feeling Connected Through Bodily Touch and Comforting Care Data Analysis Analysis, being mainly performed by the first author, in close collaboration with the second author, was guided by the interpretative phenomenological approach described by van Manen,28 although in this study, focus was on interpreting meanings rather than seeking the overall essence of connectedness. The reflective questioning that was part of the data collection procedure can be viewed as a parallel process of interpretation in which the participants

Care, whether in the form of fundamental nursing activities, for example, assisting with shaving or adjusting a patient’s position in bed, or of a more technical nature, for example, inserting a urinary catheter to empty the bladder or dressing a wound, was generally described by the participants as providing comfort. These care procedures all involved physical touch, which the participants described it as a very powerful mediator for the feeling of being connected to other persons (eg, staff). This and

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American Journal of Hospice & Palliative Medicine®

4 the staff’s sometimes very subtle gestures, for example, nodding in recognition or placing a hand on the person’s shoulder to confirm that they had been noticed, were experienced as significant moments of trust and connectedness, making them feel less alone: When the nurses rub your face, adjust your pillow, or just come and sit with you for a while, it becomes more concrete. You don’t need to talk about anything in particular, maybe they read the newspaper to you—but it makes you feel less alone. (Participant 4)

Little things that promoted the participants’ feeling of ‘‘being me’’ could be comforting and provide feelings of being connected to their own previous everyday life with habits, routines, and activities. One participant described nights in the ward when she woke up and wanted to have something to eat. She could then go out to the kitchen, open the refrigerator and find a bowl of stewed apples, marked with her name, that the staff had made especially for her, because someone had recognized her habit of eating stewed apples at home. In the same way, when staff greeted the participants with their names or made acknowledging comments or questions about their clothes, hair, health, and so on, this was described as enabling feelings of being connected to other people in the role of themselves as ‘‘me’’ and not just as a patient. These feelings could also be promoted by conversations or small talk that took place during bodily care situations. One participant talked about what he found important to feel like ‘‘him’’ in these encounters with staff: Really it’s about them being natural. Not that we meet on . . . well, equal terms might be too strong, but . . . actually yes—mentally equal terms. They don’t need to step into some kind of professional roll in the way that they talk to me, and they don’t do that. We talk about some of the stuff you [the researcher] and I have talked about. So it’s kind of not just about medicine and food. (Participant 5)

Some participants, who described themselves as lonely persons, ie, living alone or having few relatives or friends, regarded it as dignifying to have someone acknowledge them and care for their body, thus enabling feelings of connectedness to other persons.

Feeling Connected to and Uncanny About Other Patients During their stay in the ward, the participants encountered and interacted with other patients to a various degree. The participants’ descriptions of these encounters revealed ambiguous experiences of connectedness through illness on the one hand, and uncanniness, followed by detachment because of the other person’s illness, on the other. Social interaction between patients on the ward usually took place in the corridor, in the smoking area, in the TV/dining room, or in a spot with large glass windows looking out over a garden terrace, and where music, meditation, reading activities, and so on were usually arranged. Some participants described it as consoling to find a person they could talk to and

share experiences of illness and everyday life with and said it created a certain sense of illness-related connectedness: You get such an immediate connection when you’ve kind of gone through the same thing . . . you don’t have the words—you don’t need them. And we could stand there and look at ourselves in the mirror and compare our scars and talk about what the doctor had told us. (Participant 8)

Talking to other patients, solving a puzzle, or having a cigarette together was also a way of breaking the monotony that helped create a sense of ordinariness in what were experienced as rather long days on the ward. Helping out with a wheelchair, going out to buy a newspaper, or getting a cup of coffee for another patient was also a way of feeling useful and affirmation of ones’ own capabilities. One participant, who had been an active organizer of social gatherings and activities in her previous everyday life, had initiated a common morning exercise session on the ward together with the physiotherapist. She had also inspired other patients to join her in painting and singing activities: Yes you see, I top it up with activities that I usually do—and it’s really nice—I’ve got a lot of patients to join in . . . Yes, we paint and sing . . . so I’ve noticed they’ve become a lot happier. We try to encourage one another. (Participant 7)

For her, these activities meant enhanced well-being and shared moments of connectedness and meaning, instead of spending the days alone. She was happy to see that other patients felt the same, and this made her feel useful and more at ease—just as in ordinary life. Thus, the ward became a less estranged and anonymous place to be in. Nevertheless, there were participants who felt uncanny about other patients because of their illness and suffering, made obvious by their bodily representation, and reminding the participants of their own present or anticipated condition. One participant, who was awaiting palliative chemotherapy, avoided spending too much time outside her room because she became distressed by encountering other patients or by just seeing them passing her in the corridor: ‘‘Of course I see the others here, what they look like—one after the other––and I think: Will I get like that too? No hair, white and pale like a mummy’’ (Participant 3). To her, other patients’ deteriorating bodies represented the downward spiral that she feared the most. Another participant, who had a large facial wound, said that he felt that other patients avoided making contact with him, perhaps because he himself thought he looked alien and made others feel uncomfortable.

Maintaining a Sense of Connectedness to Significant Others and Society The participants mostly had a strong desire to maintain a sense of connectedness, both to relatives and family members, and to wider society. However, their efforts to connect fluctuated, sometimes with more focus on family members and sometimes

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with more on society. The routines that most of the participants had established regarding friends or family members coming to visit or calling were regarded as the most important moments of the day, and their time on the ward was often planned around these hours: ‘‘He [the son] calls here every evening, when it’s about 6 pm and finds out how my day has gone’’ (Participant 3). At the same time, maintaining a sense of connectedness was described as challenging, and moments of connectedness with relatives and family members were often regarded as equally complicated and consoling, as it could force them to deal with their own sorrow and anxiety related to impending death: ‘‘It’s great, in some ways. But it’s also exhausting, and in a way it gives you troubles’’ (Participant 1). There were also participants who had, by themselves or with help from staff, reconnected with family members with whom they had a poor relationship. They described the process of reconnecting as joyful and relieving, providing them with a sense of emotional ‘‘home-coming’’ and being ‘‘whole’’ that they had not felt for very long. At the same time, it was devastating for them to know that now they had been fortunate enough to experience the rebuilding of these relationships they would never be able to fulfill them because it was too late. It could also bring old conflicts and related emotions to light that they sometimes felt too bereft of strength to deal with. Technical devices (computers, mobile phones, etc) were regarded as very important, as they facilitated staying connected with significant others and society. All the participants were asked about what would be important for them to feel more ‘‘at home’’ and ‘‘me’’ in their present situation, and several gave the same answer as this female participant: This thing about having a computer, it’s terrible, but I realized that if I was going to feel like x then I had to have a computer. I thought about what you said last time. What I really miss around here, and it is of course, a computer—to communicate with my children and with them. (people at work) (Participant 2)

The computer was a valuable mediator for connecting with people, with work or just keeping up-to-date about what was happening in the world, either in the participants’ own municipality or in wider society. Surfing on the Internet was also a way of finding meaning and preserving dreams, memories, and so on in their often monotonous everydayness on the ward: ‘‘This computer out here that I borrow—I do nothing but look at boats. So I do that during the day, and I’ve found the most awesome scenery in the world’’ (Participant 1). For the participants, and even for those who no longer had the strength to use a computer, knowing there was one available and having Internet access had a symbolic value of ‘‘still being able to go out there’’ and catch up with what was going on with significant people or with society. This was also the reason for watching the television (or even just leaving it on) and in a very profound way, watching TV programs also whiled away the time and gave moments of

respite from thoughts about illness and dying. Moreover, certain TV shows, series, or news programs represented routines from previous everyday life that made them feel more at home in their present situation and location. Text messages, e-mails, and to some extent also social Web sites (Facebook) made communication easier for most participants. Mobile phones enhanced family members’ and participants’ possibilities to communicate and sending a text message was often a good way of connecting, for example, with children who were busy during the day, if the participants felt lonely or wished to have contact: ‘‘I don’t call them that often because they’re busier than I am too. I can send a text message, if I want something’’ (Participant 6). However, all these communication tools were also perceived as challenging. Sometimes, the very existence of these gadgets posed demands on the participants to stay in touch, draining them of bodily and mental strength, especially during their last phase of life, when they sometimes felt ‘‘obliged’’ to communicate with family members, friends, or work more than they actually needed themselves.

Discussion Of the 3 dimensions of connectedness revealed, connectedness through touch and comforting care is the 1 dimension that is best recognized from previous palliative (and related) care literature. Bodily touch, in the form of comforting and consoling touch during everyday nursing care4,16,17 or focused massage therapy,29 has been recognized to provide feelings of connectedness with other human beings, often caregivers. It has also been described as enabling connectedness with one’s own body and self, as the comfort that it brings contributes to the alleviation of distress and suffering.3,17 Our study thus confirms that bodily touch is one important mediator for the experience of connectedness among severely ill persons. The results revealed that there were ambiguous feelings about social connectedness, although consoling experiences were more prominent in the participants’ narratives. The 2 conditional factors that seemed to influence experiences of social connectedness were the place of care and its particular features (other patients, opportunities made for connectedness) and the participants’ own condition. The part of the results that point to the significance of and sense of connectedness with other patients echoes what has been frequently reported in the broader chronic illness literature. Many times, these relationships have been described as most significant during periods of an illness trajectory, for example, during treatment periods, adjustments to diet, social life, or work, because intersubjectivity was enabled through mutual and shared experiences of illness.30-32 In the palliative literature, focus on this topic has more often been from a nursing perspective, in terms of the importance of achieving a sense of connectedness with patients to promote a caring relationship33 or from a next of kin perspective, for example, in the context of support groups related to caregiving and

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6 bereavement.34,35 Patients-related experiences of palliative and hospice day care have also been described.7,36 To our participants, social connectedness was also a matter of making meaning and making time fly in the everydayness of the ward. This has long been recognized as significant for the enhancement of well-being at the end of life and accordingly has been one of several pronounced suggested benefits from hospice and palliative day care places.6,7 In the context of inpatient palliative care, meanings and experiential outcomes of social joint activities have been less researched. However, our result suggests connectedness through social outreach, both real and virtual, to be of similar significance. Detachment from other patients in the ward, especially those with obvious body decline and signs of illness progression, can be described as one of 2 types of ‘‘social withdrawal’’ that we found in this study. According to Zahavi,37 the body of another always presents itself in a meaningful context or situation that is supported by that very body. In a palliative care ward, the meaningful context of being ‘‘a place for the incurable’’ is clear to the patient, and so he or she encounters other patients with an understanding of what the look of their deteriorated bodies ‘‘means.’’ The encounter thus induces in the patient the realization of heading toward his or her impending death. Larsen et al.38 recently presented results from a metasynthesis of hospitalized (various settings) somatic patients’ experiences, also revealing ambiguous feelings about patient– patient interaction and relationships. Encountering other patients is inevitable in a place of care such as this, although many palliative care wards may now offer single rooms. The palliative care ward environment may thus be potentially distressing for some people, and it may call for discernment and person-centered communication before assuming that social connecting and joint activities will promote well-being for all individuals. The second type of withdrawal outlined by the participants was based on their own body deterioration and mind exhaustion (fatigue). In contrast to the suggestions of results in some previous literature,22-24 our study did not reveal descriptions of a determinedness to withdraw, either from significant others or from wider society. In palliative care practice, there is a normative and strong emphasis on the significance of well-being and a ‘‘good ending’’ (diminishing anxiety and facilitating a sounder grieving process), both for the patient and his or her family members, and of staying connected and reconnecting with ‘‘lost’’ relationships.5,39 From this study, we have learned that this subject can be both complicated and distressing and consequently requires gentle, person-centered approaches. The limited access to the world that comes with being severely ill, hospitalized, and incapable of moving about freely makes social joint activities in the palliative care ward especially important, as well as access to the Internet, via computers or other electronic devices. Schutz and Luckman12 distinguish between 2 spatial dimensions of everyday life: the world within actual reach and the world within potential reach. The world within actual reach is the part of the world, which is accessible to a person’s proximate experience. It embraces perceived objects, as well as objects

that can be perceived through refocusing attention. This is the actual ‘‘here,’’ the place where the person finds herself; it is the starting point for spatial orientation. Parts of the world that were once in a person’s actual reach form the province of ‘‘restorable’’ reach and are experienced through the idealization that what was once within the person’s spatial action limit can always be brought back there. This sphere thus transcends the world within actual reach and accordingly represents a world within potential reach that is constituted by experiences. Another aspect of the world of potential reach is characterized by orientation toward the future. This is the part of the lifeworld that has never been in the person’s reach but can be brought within it, if needed or desired. It therefore constitutes the world within attainable reach.12 It seems as if Schutz and Luckman’s ideas relate to a healthy, and in that sense ‘‘unlimited’’ being in the world. For people like our participants, who are aware of their impending death and who are spatially ‘‘imprisoned’’ in inpatient care because of illness and body decline, this idea of an attainable lifeworld is likely to be muddled, and at best present in the form of hopes and dreams of a somewhat extended future. In fact, being enrolled in a palliative care place without one’s own capability and strength to move about freely can be seen as living in a spatial world where the former familiar world of social relations is there but not spatially within reach. It can be argued that our participants’ emphasis on having access to a computer and the Internet made the potential lifeworld attainable by bringing social relations and society into the palliative care ward, or more precisely, the participants’ own rooms and their bedsides, with the assistance of virtual technology.40 The enablement of reaching the world outside the palliative care ward created a sense of connectedness we interpret to have promoted a sense of belonging8 as a fundamental human need and continuing to live a meaningful life until death. This links to the notion of life meaning as subject to well-being41 and to a public health perspective, in which one of the key features is to bring society and the community into palliative care.42 Information technology and social media provide enhanced but sometimes overwhelming opportunities to connect and communicate. In other stressful life situations, for example, emotional crises of various origins, connecting with people on social Web sites who are less closely related to you has sometimes been reported to feel easier, as it is less demanding and provides opportunities to take part in the social network to an extent that feels acceptable to the individual.43 Interestingly, none of our participants talked about these kinds of social relationships. It may be that they were not directly asked about them, but it may also simply be a case of our participants not belonging to the ‘‘Facebooking’’ and ‘‘Instagramming’’ generations.

Study Limitations There is always a balancing act between obtaining sufficient data and respecting the integrity and well-being of dying

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persons. Our impression, however, is that all the time we spent conversing with the participants yielded not just enhanced understanding about meanings of connectedness for final stage inpatients in hospice and palliative care but also provided them with support and enabled them to build relationships, which is inline with previous research.44,45

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 received no financial support for the research, authorship, and/or publication of this article.

Conclusion and Implications This study underscores the importance of feeling connected until death. It also outlines that the desire and efforts to stay connected (including virtual and e-connectedness) involves not only family members and friends but also society. Connectedness in the context of hospice and inpatient palliative care is nevertheless complex and determined by a number of conditional factors. Patients can cocreate or challenge each other sense of connectedness through the symbolism of illness and diseased bodies. Moreover, the capability of connecting, both with significant people and society, is influenced by illness and body decline, the spatiality and atmosphere in the care place, and the activities and resources that are facilitated. Facilitating opportunities for connectedness between patients (although gentle approaches and awareness about the potential challenges need to be considered) are recommended. The value of staying connected to society rhymes with the notion within palliative and hospice care of enabling people to ‘‘live until they die.’’ Embracing the idea of ‘‘bringing society’’ into inpatient palliative and hospice care places to make these areas less detached and enabling patients to stay connected to society and a life that does not only comprise illness and dying are suggested. Of course, this can be achieved in various ways. Some practical suggestions related to our results are facilitating easy access to media and virtual technology (computers, radio, TV, Internet, etc), scheduled and unscheduled social activities inside and outside the patient’s own room (news reading, music or literature events, debates, common board games, movie nights, etc), in which patients have opportunities to connect, short walks/wheelchair/bed tours outside the care place, and facilitation of necessary assisting devices (eg, portable oxygen) for moving around more independently in and outside the care place or with assistance. Future research interventions that promote connectedness in hospices and inpatient palliative care places are suggested. Acknowledgments The authors sincerely thank the Erling Persson Foundation, Sven and Dagmar Sahle´n Foundation, OE and Edla Johansson Scientific Foundation, and Olle Engkvist Foundation for funding the study, and the study participants for generously sharing their time and experiences during their last period of life.

Authors’ Note ¨ ) contributed to designing and planning the Both authors (CH and JO ¨ . The study. Data were collected by CH and analyzed by CH and JO article was drafted by CH. Both authors read and approved the final article.

References 1. Ottmann G, Dickson J, Wright P. Social connectedness and health: a literature review. Gladnet collection. DigitalCommons ILR Cornell Educ. 2006;7:1-55. http://digitalcommons.ilr.cornell.edu/gladnetcollect. Accessed October 1, 2014. 2. Rasmussen BH, Tishelman C, Lindqvist O. Experiences of living with a deteriorating body in late palliative phases of cancer. Curr Opin Supp Palliat Care. 2010;4(3):153-157. 3. Lawton J. The Dying Process: Patients’ Experiences of Palliative Care. New York, NY: Routledge; 2000. ¨ hlen J. Meanings and experiential outcomes of bodily 4. Ha˚kanson C, O care in a specialist palliative context. Palliat Support Care. 2014:1-9. doi: 10.1017/s147895151400025x. 5. Guo Q, Jacelon CS. An integrative review of dignity in end-of-life care. Palliat Med. 2014;28(7):931-940. 6. Higginson IJ, Hearn J, Myers K, Naysmith A. Palliative day care: what do services do? Palliative day care project group. Palliat Med. 2000;14(4):277-286. 7. Payne M. Social objectives in cancer care: the example of palliative day care. Eur J Cancer Care. 2006;15(5):440-447. 8. Patrick H, Knee CR, Canevello A, Lonsbary C. The role of need fulfillment in relationship functioning and well-being: a selfdetermination theory perspective. J Pers Soc Psychol. 2007; 92(3):434-457. 9. Maslow AH. Toward a Psychology of Being. 3rd ed. New York, NY: John Wiley and Sons; 2011. 10. Pesut BA. Conversation on diverse perspectives of spirituality in nursing literature. Nurs Philos. 2008;9(2):98-109. 11. Pesut B, Fowler M, Taylor EJ, Reimer-Kirkham S, Sawatzky R. Conceptualising spirituality and religion for healthcare. J Clin Nurs. 2008;17(21):2803-2810. 12. Schutz A, Luckman T. Structures of the Life-World. Vol. 1. Illinois: North Western University Press; 1973. 13. van Bel DT, Smolders KCHJ, Ijsselsteijn WA, de Kort YAW. Social Connectedness: Concept and Measurement. Amsterdam: IOS Press; 2009;67-74. 14. Price B. Altered body image: managing social encounters. Int J Palliat Nurs. 2000;6(4):179-185. 15. McKechnie R, Macleod R, Keeling S. Facing uncertainty: the lived experience of palliative care. Palliat Support Care. 2007; 5(4):367-376. 16. Rasmussen BH. Striving for becoming at-home in the midst of dying. Am J Hosp Palliat Care. 2000;17(1):31-33. ¨ hlen J, Bengtsson J, Skott C, Segesten K. Being in a lived 17. O retreat: embodied meaning of alleviated suffering. Cancer Nurs. 2002;25(4):318-325.

Downloaded from ajh.sagepub.com at UNIV OF PITTSBURGH on November 15, 2015

American Journal of Hospice & Palliative Medicine®

8 18. Rasmussen BH, Edvardsson D. The influence of environment in palliative care: supporting or hindering experiences of ‘at-homeness’. Contemp Nurse. 2007;27(1):119-131. 19. Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care. 2013;12:7. doi:10.1186/1472684X-12-7. 20. Gomes B, Higginson IJ. Where people die (1974-–2030): past trends, future projections and implications for care. Palliat Med. 2008;22(1):33-41. 21. Swedish Palliative Register. [http://palliativ.se]. Accessed October 1, 2014. 22. Lawton J. Contemporary hospice care: the sequestration of the unbounded body and ‘dirty dying’. Sociol Health Illn. 1998; 20(2):121-143. 23. Rose N. Governing the Soul: The Shaping of the Private Self. London: Routledge; 1990. 24. Sweeting HN, Gilhooly ML. Doctor, am I dead? A review of social death in modern societies. Omega. 1992;24(4):252-269. 25. Kellehear A. Spirituality and palliative care: a model of needs. Palliat Med. 2000;14(2):149-155. 26. Dobratz MC. ‘‘All my saints are within me’’: Expressions of endof-life spirituality. Palliat Support Care. 2013;11(3):191-198. ¨ hlen J. Searching for knowledge and understanding 27. Friberg F, O while living with impending death—a phenomenological case study. Int J Qual Stud Health Well-being. 2007;2(4):217-226. 28. van Manen M. Researching the Lived Experience: Human Science for a Action Sensitive Pedagogy. 2nd ed. Ontario: Althouse Press; 1997. 29. Cronfalk BS, Strang P, Ternestedt BM, Friedrichsen M. The existential experiences of receiving soft tissue massage in palliative home care – an intervention. Support Care Cancer. 2009;17(9): 1203-1211. 30. Hakanson C, Sahlberg-Blom E, Ternestedt BM, Nyhlin H. Learning about oneself through others: experiences of a group-based patient education programme about irritable bowel syndrome. Scand J Caring Sci. 2012;26(4):738-746. 31. Luoma ML, Hakamies-Blomqvist L, Blomqvist C, Nikander R, Gustavsson-Lilius M, Saarto T. Experiences of breast cancer survivors participating in a tailored exercise intervention – a qualitative study. Anticancer Res. 2014;34(3):1193-1199.

32. Ventura F, Ohlen J, Koinberg I. An integrative review of supportive e-health programs in cancer care. Eur J Oncol Nurs. 2013; 17(4):498-507. 33. Phillips-Salimi CR, Haase JE, Kooken WC. Connectedness in the context of patient-provider relationships: a concept analysis. J Adv Nurs. 2012;68(1):230-245. 34. Henriksson A, Benzein E, Ternestedt BM, Andershed B. Meeting needs of family members of persons with life-threatening illness: a support group program during ongoing palliative care. Palliat Support Care. 2011;9(3):263-271. 35. Layden J, Nicol B, Connelly M, Hekerem D, Meade R. Benefits of health and social care integration. BMJ Support Palliat Care. 2014;4:118. doi:10.1136/bmjspcare-2014-000653.40. 36. Kennett C1, Payne M. Understanding why palliative care patients ‘like daycare’ and ‘getting out’. J Palliat Care. 2005;21(4):292-298. 37. Zahavi D. Subjectivity and Selfhood. Investigating the FirstPerson Perspective. Massachusetts: Bradford Books; 2008. 38. Larsen LS, Larsen BH, Birkelund R. An ambiguous relationship – a qualitative meta-synthesis of hospitalized somatic patients’ experience of interaction with fellow patients. Scand J Car Sci. 2013;27(3):495-505. 39. Hermansson AR, Ternestedt BM. What do we know about the dying patient? Awareness as a means to improve palliative care. Med Law. 2000;19(2):335-344. 40. Bakardjieva M. Internet Society. The Internet in Everyday Life. London: SAGE Publications Ltd; 2005. 41. Frankl VE. Man’s Search for Meaning. Boston: Beacon Press; 2006. 42. Murray SA, McLoughlin P. Illness trajectories and palliative care: implications for holistic service provision for all in the last year of life. In: Sallnow L, Kumar S, Kellahar A, eds. International Perspectives on Public Health and Palliative Care. New York, NY: Routledge; 2012. 43. Chayko M. Portable Communitites. The Social Dynamics of Online and Mobile Connectedness. New York, NY: State University of New York Press; 2008. 44. Carlander I. Me-Ness and We-Ness in a Modified Everyday Life Close to Death at Home. Doctoral Thesis. Stockholm: Karolinska Institutet; 2011. 45. Walker S, Read S. Accessing vulnerable research populations: an experience with gatekeepers of ethical approval. J Palliat Nurs. 2011;17(1):14-18.

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Connectedness at the End of Life Among People Admitted to Inpatient Palliative Care.

The significance of connectedness for well-being is well known. At the end of life however, illness and body decline may challenge a person's ability ...
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