Hospices - The Potential For New Media
Daniel Miller (Professor, Dept. of Anthropology, University College London. email@example.com)
PART ONE - THE UPTAKE OF NEW MEDIA
PART TWO – THE DIGITAL DIVIDE, CONFIDENTIALITY and BARRIERS TO CHANGE
PART THREE – EMERGING INITIATIVES TO IMPROVE COORDINATION AND COMMUNICATION
PART FOUR - PILOT STUDIES AND RECOMMENDATIONS
SUMMARY OF REFLECTIONS and PROPOSED INITIATIVES
This document outlines some results and conclusions from interviews with Hospice staff, patients and carers that have been carried out since May 2012. This research will continue for another three years, with an increased academic focus on dying patients (in the last days, weeks and months of life), including their communication not only with the Hospice, but with their larger social universe, examining the potential of new media in relation to combatting feelings of isolation and understanding the wider relationship of patients to family, friendship, locality and community. The larger research project is in response to documents such as Dying For Change by Leadbeater and Garber (2010) Sofka, Cupit, and Gilbert Eds. (2012), and Walter et. al. (2011) which examine the broader context for end of life care and communication. By contrast, the current document has a more pragmatic short-term focus on acknowledging the extraordinary changes in the technology of communications that already exist, and the equally extraordinary and puzzling barriers to their current usage.
Initial studies suggest trialling and implementing a number of possible pilot projects and challenges that could be of clear potential benefit to patients. The report also highlights some impediments within current practices, ranging from a highly exaggerated focus upon confidentiality of patient’s personal data and the retention of ineffective media such as the fax, which turn out to have considerable negative impacts upon patients’ welfare and need to be urgently addressed.
The project is an offshoot of research on the consequences of new media in seven countries led by Professor Daniel Miller and funded by the European Research Council (http://www.ucl.ac.uk/social-networking/projects/social-networking-social-science). At the invitation of a Hospice a collaboration was created with one of their managers to carry out interviews with dying patients, their carers and Hospice staff. This report is based on between one and three interviews carried out by Miller and the Hospice manager with each of fifty informants who include patients, primary carers and professional Hospice staff from several Hospices and palliative care institutions. Interviews were held between May and December 2012. Most of the Hospice work is with patients in their own homes. This paper systematically examines current and potential usage of new media. The majority of staff interviewed reported feeling unclear as to whether there exists any official policies regarding which media they are or are not permitted, or expected to use. This survey reflects both discussion of current and envisaged future usage. The second part explores the possibility of some ‘quick wins’ - that is the immediate adoption of pilot projects or initiatives in the use of new media that could be of direct benefit to both patients and staff many of which could be implemented with minimal cost.
PART ONE - THE UPTAKE OF AND THE BARRIERS TO NEW MEDIA
This section reviews each of the new media that are already available to many staff and patients, documenting the advantages and grounds for encouraging their future use. Both advantages and disadvantages to staff and observations about patient’s private use of these media are noted. The obvious caveat, which is discussed in more detail below, is that no pressure should ever be exerted on patients to adopt or use a form of media they do not feel comfortable with. I then turn to suggest the primary reasons why new media are not being taken up within the Hospice sector and health services more generally.
SKYPE, WEBCAM, FACE TIME
Almost no take up of Skype as a professional tool by Hospice staff was observed, although nurses may have supported patients to use Skype to see their relatives (typically in Australia) for special celebrations within the Hospice. There were also poignant stories about final goodbyes with transnational relatives and the considerable impact of having visual communication for these. Almost all staff had, however, contemplated the potential advantages of using webcams in the future and could see major benefits in a swift adoption of this technology.
With regard to staff-patient interactions, Skype as an alternative to face-to-face contact or telephone provoked much discussion and concern. Staff and patients agreed that an actual visit to a patient is almost always better than an encounter through Skype, and many were quite concerned that the adoption of webcam should not become a substitute for face-to-face consultations with patients. These concerns may arise not just from a purist view of how healthcare should be delivered, but from a concern that changing models could erode job security. An exception was a doctor who found patients fearful of their first home visit and wondered if an initial Skype call could provide a gentler introduction. Staff and patients also concurred that having the visual component of webcam was almost always of considerable benefit over the current usage of the telephone as a supplement to home visiting, remembering that ‘observation’ is a key tool in the practice of medicine.
Staff interviews suggest that contact by phone is as common as actual visits and frequently alternates with home visits (see also The National Council of Palliative Care Minimum Data Set 2010-2011, Table 33). Commonly mentioned advantages of webcam included the ability to actually view the patient’s current physical condition and to assess the psychosocial aspects of patients well being (e.g. whether they have got dressed that day, their general physical appearance and the state of their house). There is a recognition that English patients often share a culture of ‘Yes I’m fine thank you’, even when this is anything but the case. Carers and volunteers feel they should be able to cope, and are reluctant to reveal that they are not. Similarly, nurses report their feelings of helplessness when a patient is sobbing on the phone and they have no means to visibly convey their support or give reassurance. They all seemed convinced that visual contact would be immensely enabling in this regard, with a strong emphasis on the importance of seeing a face in giving reassurance. Another advantage was in the effective conveying of information, for example, being able to see the symptom being discussed or to visually demonstrate how to deal with a device or type of medicine.
The way webcam sits between the phone call and the visit was of particular significance when several staff noted that on weekends and other times they have to determine whether or not a patient actually needed a special call out at that time or could be safely left to a later date or time. Most (but not all) argue that being able to see patients would hugely improve their ability to assess the situation and make decisions, noting that a good number of such visits subsequently turn out to be unnecessary and have an impact on resources that could be better deployed.
Staff generally felt that webcam was a facility that should be provided within the Hospice itself and most were not comfortable with the idea of Skype from home. Home use would raise concerns with personal appearance, such as the need for staff to be appropriately dressed, which does not apply with phone calls. They also need clear distance at home away from the stressful nature of their work. Staff did not see this as a problem for patients ‘since after all I am allowed in when they are in their jim-jams and feeling rough.’ Though, in fact, some patients and their carers reported being very conscious that they are unable to keep up personal appearances. Other disadvantages of Skype against a regular phone call was that patients would be less mobile and less able to do other things at the same time. Skype also seemed like a more formal encounter rather than the informality of the familiar phone call but this may lack of familiarity.
On the other hand staff suggested that Skype could have a vital role since for patients as one put it ‘it is all about face’. After a death relatives want to feel the doctor knew the person not just their illness, and being able to see each other is what constitutes having ‘met’ someone as a human being as opposed to the faceless phone call. It is what helps people remember each other, something of particular significance to patients with dementia where seeing could radically improve their ability to connect to their professional carer.
People preferred the use of application names such as ‘Skype’ and ‘FaceTime’, the word ‘webcam’ has problematic connections with voyeurism. It was also felt that Skype would greatly improve other facilities used by patients such as NHS Direct. Staff saw considerable broader potential within medical care. For example, when an elderly patient falls, the effort in getting them to A&E is considerable and traumatic for the patient. A webcam consultation where medics can affirm whether the patient has movement or mobility in particular limbs can help establish whether a hospital visit is actually required.
It was also suggested that webcam had potential in the interaction between professional staff. In particular, nurses felt that sometimes they were trying to share information with other care providers or social services, but they only ever had contact by phone and had never met their correspondents. They seemed convinced that once visual contact had been established there would be an increase in trust and sharing with people they had then ‘met’. Staff also noted that a meeting that takes an hour but then requires a further two hours of travel there and back again could be far more effective through a single-hour group video call (Skype, FaceTime and Google Hangout all offer this function) in comparison to three hours plus petrol costs.
In addition, a significant uptake of webcam amongst patients was identified. In cases where in-patients did not know the technology, often their children will set this up within their room. The Hospice is located in a region dominated by local-born English rather than migrants, but there seemed a significant link to relatives now living in Australia that came up quite frequently. The Hospice conducts many family services (including around a dozen ‘late’ weddings or wedding blessings) and other celebrations such as art exhibitions a year and Skype would provide an invaluable resource in allowing transnational relatives to be present at transitional celebrations. Another suggested usage was for prisoners whose parents are dying and where both bureaucracy and cost currently seems to prevent them from making final visits. Although the initial stress is on transnational separation, elderly people who, for example, were no longer permitted to drive cars for safety reasons were coming to appreciate the potential of Skype even for communication with close relatives and friends in a neighbouring village.
In general, Skype was recognised both by patients and staff as a valuable instrument in combatting loneliness and isolation which is seen by many of them both as an affliction of the elderly, but also as symptomatic of changes in English society including the dispersal of family, the decline in public and communal activities such as the church and the growth in neglect, or lack of concern in society more generally. The potential of loneliness and isolation to have significant negative impact on health is now well-recognised—a further imperative to propose a range of new solutions. Skype also counters the loneliness that comes with increased isolation resulting from illness or treatments that makes patients house-bound.
In a separate study of the use of Skype in Trinidad, Miller and Sinanan (In press) have noted several other benefits which appear to not yet have been discovered in the UK. For example, Skype has particular advantages in the key relationship between grandparents and grandchildren. On the one hand, toddlers cannot recognise the person at the end of a telephone conversation as their grandparent, but from a very early age can recognise a grandparent through Skype. At the same time a grandparent who is generally technophobic and dislikes new technology finds Skype to be more like the screen of a television, a technology they already use and its visual immediacy pushes the technical aspects into the background. In the next section examples are presented of times when Skype conversations are envisaged to be helpful in providing a less direct, and possibly less confrontational, way of communication. But also that some patients who wish to avoid face-to-face conversations for emotionally difficult exchanges might also want to avoid Skype for the same reason. This illustrates the importance of providing choice to patients within different contexts rather than making assumptions that one method is better or worse.
The use of email is currently quite variable. Staff reported that they rarely asked patients about using email as a primary way to communicate appointment details and clinical updates and most often it was carers who suggested its use. But patients, carers and staff were generally in agreement with regard to the potential benefits of email where the patient or carer already routinely uses email in their work and everyday life. The first benefit is the ease of email as a mode of recording, conveying and documenting information. There are multiple versions of these benefits - from having a document which lays out clearly a regime for taking medicines and exercises, to a patient feeling secure that their description of preferences for future treatment has been accurately recorded and documented. Nurses also favour the informational potential, ‘it’s a good forum for me to notify them about my working hours, or when I’m on holiday—things like that.’ The documentary properties of email and texting can also be important at a later date for justifying decision-making processes in the face of complaints. At a recent meeting of informal carers of Hospice patients, 9 out of 11 carers said they would prefer to receive Hospice information by email rather than letters. Staff noted, however, that since many work part-time it was also essential to have systems in place so that emails, text and other messages were forwarded on to other staff at time they were not working.
There are elderly patients who prefer the hard copy and familiarity of the letter, but this is becoming rare. It was also suggested that for young people receiving letters, this may suggest that the Hospice is a rather old-fashioned and inefficient institution. On balance there seems no good reason for traditional postal services to remain as the automatic method of correspondence when patients have by now more routinised means of acknowledging, storing, filing and generally using digital text as compared to printed material. Letters have become something of an anomaly, and in the future are likely to remain stuck on a mantelpiece with the wedding invitations and bills. By comparison digital notifications have far more flexible potential for being incorporated into diaries that are replicated on phones as well as computers and thereby more likely to be retained, noticed and acted upon. In the future this may also include automatic reminders and calendar updates and possibilities for merging and synching information.
The second advantage of email concerns the issue of asynchronicity. This means that unlike visiting and phone calling it does not require the simultaneous attention of the people in communication. As a result the Hospice and the staff can send messages at a time convenient for themselves, while patients and carers can both read such messages and send their own correspondence at a time more convenient to them. To quote ‘Well if you think of something at two o’clock in the morning, and you don’t want to text me, or you don’t want to call me—which, obviously, my phone won’t be on anyway—you don’t want to lose that thought, then you email it to me. (And you wouldn’t mind somebody emailing you at three in the morning?) No, because they would know that I wouldn’t pick it up until nine o’clock the next morning when I came to work.’ A further point was that ‘it’s very intrusive visiting and phoning all the time whereas email they can choose whether to answer or not answer and the same with text.’ Email is also an easy route into updating and providing trails for any new medical professionals that need to be brought into the care process.
The third advantage of email and other textual forms is with regard to patients who have lost the use of physical voice. Examples would include motor neurone disease. I have encountered staff who are frustrated and angry that such an obvious facilitating of patient’s needs are perceived to be prohibited on what they would regard as spurious grounds of patient confidentiality, in that for such patients any retained ability is such a lifeline as to entirely overshadow questions of privacy. There is urgent need to facilitate all alternative media for those with impaired speech, as emphasised in the Mental Capacity Act (2005) in which all alternative methods for communication must be explored.
Most staff regard email as one of the most secure forms of communication. They are well aware that when required there are many forms of password protection, encryption and others devices that could allow email to take its place as an ideal solution to problems of security and confidentiality and are frustrated that it is regarded by official bodies as a problem rather than a solution. They assume that they would be using a work email address rather than a personal email and do not envisage problems in direct communication through this route, given that everyone copes with unwanted email and spam of various kinds already. There is an issue, however, that as email becomes more integral to professional communication staff may need to keep separate the more informal chat and gossip aspects that tend to blur within current genres of email usage. Instead they would need to regard emails as legally accessible in the same way as their patient’s database records i.e., generate a solution to incorporate email correspondence into the digital narrative on the patient electronic record.
A further advantage of email is precisely that it seems distant and different from face-to-face communication. For what is probably a (significant) minority of patients and carers, at least with respect to those of English culture, there remains an evident inhibition with respect to face-to-face communication. There is a strong sense of embarrassment and reticence in talking about one’s problems or engaging in highly emotional public expression. Staff have noted occasions when such patients find it much easier to express themselves through writing rather than speaking, something that was true even in the days of letter writing (for example, as a means to declare and describe love). As one patient suggested ‘I would never have come into a Hospice to see a counsellor or anything like that but to let out how I was feeling, on my terms, in the moment I wanted to and then press the send button felt very cathartic. I didn’t feel like I was bothering anyone and knew they would respond when convenient to them – this kind of support really fitted for me.’ In turn a staff member had noted ‘You know, in the cold light of day, they might feel completely different, but we’ve captured that thought. It could be a door opening to a conversation that is significant.’ The Samaritans would be an example of an organisation that successfully combines telephone, email, face-to-face and postal counselling services (http://www.samaritans.org/how-we-can-help-you/contact-us)
We need to acknowledge there are patients and carers who feel unable to put their feelings into speech when directly confronted by a care worker, however sensitive and appealing that care worker. Those same patients and carers may find that in the middle of the night they can write pages of text which give them both huge cathartic release as form of expression but also is the only way carers can find out what they really think and feel. This suggests a combination of several factors that are brought together by email. One is that this is being done at a quiet or sleepless time that suits the patient or carer. Secondly, that this is a context of complete privacy, without interruption, when a person is alone with their thoughts and their suffering. Thirdly they are not having to face their correspondent directly with all the attendant embarrassment and reticence. It is therefore not surprising that they show this preference for email. By the same token there are clear differences in the way people prefer to receive bad news or disappointing prognosis. Most probably prefer the interaction and direct reassurances that can come with face-to-face. But we find evidence that there are others who hate or fear such direct reporting and would state a clear preference for a media such as email, even in receiving a poor prognosis. Evidence for this came from our study of how people communicate having cancer and disease progression in their private lives. At present the Hospice does not cater for patients preference in this matter.
Staff are also frustrated by the delay in using email for professional correspondence. In everyday life email is often the hub that capitalises on the fluidity of digital text. ‘I can actually copy and paste an email directly onto Crosscare (patient record system), which is fantastic’. Once in digital form, text can be included with an email, sent as a secure appendage, divided, combined, edited, discussed through Google Documents and other digital platforms and so forth. These are efficiencies that exist in every other part of life, and staff are increasingly bewildered that they are not routinely available for work efficiencies.
For example nurses who make regular contact with GP surgeries report that they have been refused in their attempts to communicate with those surgeries by email. Though in some cases this may be because they are not an NHS organisation, and in other cases they are confronted by the remarkable conservatism represented by GP surgeries who in 2012 still don’t make use of email.
Patients use email in many different ways. In general this has now replaced letter writing for social correspondence. An important efficiency is the group email through which a patient inform almost their entire social network about a development in their illness or treatment rather than having to constantly repeat the same news to each person in turn. Patients also routinely use email for archiving, searching and for generally organising information in their lives, for example, creating a file for all correspondence relating to a particular illness. In general email is used as part of polymedia (see below) i.e. the entire range of media. So although a patient may state they most prefer face-to-face, then telephone and only as their third preference email, we find that email still plays a major role in their lives and they feel stripped of an important resource if denied its use. We also found, to a surprising degree, that patient’s own communications with friends and relatives has often evolved into a division around particular preferred communications. So they have some friendships which are based almost entirely on phone conversations, and others that are now almost exclusively based email. They segment their social universe into preferred communication methods.
Many of the potential advantages of texting are repetitions of observations made above with regard to email, for example, asynchronicity, distance and the easy re-use of digital text. The use of texting by staff corresponds to one of its most common uses in everyday life which is the micro-coordination of appointments and meetings. People agree in advance the approximate times and place but then text when close by to finalise the details. Staff in those Hospices which permit them to give patients their work phone numbers routinely use texts to tell patients they will be early or late for appointments. This is also hugely important for an organisation such as the Hospice which includes over a thousand volunteers who have already started using text as a way of reorganising shift patterns in the in patient unit, for example the volunteer manager sends a text message to volunteers when a shift needs covering urgently.
Staff would generally like to see an expansion of texting where patients are not only reminded about forthcoming appointments but (as long as they are comfortable texting) but also expected to confirm their presence, since all staff report a problem of patients who forget appointments made some time in advance. This would follow practice they observe being adopted by GP surgeries hospitals and even hairdressers! Other uses of texting that staff would consider include reminding patients of regimes for taking medicines especially when faced with an irregular regime or unusual regime such as taking a pill every three days, or where there is some cognitive impairment and a need for reminders. Beyond the scope of this document but potentially of considerable importance is the flexibility that such devices also provide for certain staff, for example, dieticians and some nursing tasks, in terms of being able to work from home, look after children and so forth.
The delight in texting is that it is so fast and direct, and at least at present less associated with junk mail than is email. A doctor noted that in general they prefer to keep things within regular hours, but recognised that a quick text response to a simple question could prevent hours of anxiety and suffering. An example was given of a woman who was terribly anxious about her 90 year old mother and just wanted to know if she could make some small change in the medication since noticed her mother having problems at particular times. But the procedure for making contact through several mediating bodies including the reception meant that instead of this taking a few seconds it took several hours. While medical staff give many examples of how texting can save time and effort they remain concerned with their vulnerability if they use personal phones. For example, volunteers who help carers take some time off, are requested not to give out their phone numbers since this is exactly the kind of service where patients and carers could easily become far more demanding and where the Hospice needs to intervene to maintain boundaries. At present there are measures such as passing on urgent texts to on-call teams which try to negotiate such boundaries,
Texting has also evolved into a kind of hub for the organisation of all other communication and thereby an ideal way to reflect patient sensibilities. Terminal patients may find their condition changes from day to day. With texting they can announce that they would or would not like to be visited, that this is, or is not, a good time for a phone call or a Skype conversation. Just as in organising a meeting, texting provides for a kind of micro-coordination around the use off all other kinds of device which could greatly benefit the day to day relationship between patients and staff.
When it comes to more personal and emotional communication, staff note that texting may be seen by many as impersonal and inappropriate. But it is also recognised that for some, especially young patients, it may have actually become the media of preference, being fundamental to their own everyday communications. Once more, texting follows email in this. One nurse told the following story:-‘I work with a 27 year old woman who has a 4 month old baby and a 4 year old and the only way we can communicate is by text. It’s the only way, that’s the modern world really. And stupidly, I can’t confess that on my electronic records since it is not part of policy. Typical was yesterday when I went to visit her. She couldn’t talk to me and all she was doing was crying. I left and ten minutes later she sent a text, two pages long, voicing what was going on and why she couldn’t talk to me. She wasn’t answering my calls she would only answer texts about whether I should visit.’ Clearly if the nurse had obeyed perceived prohibitions against using texting this would have been hugely detrimental to the welfare of this patient. The implication is that we need to recognise that in the future texting may become more widespread as the appropriate mode of emotional communication for some patients. Again, this makes easy translation into the patients record an important issue.
FACEBOOK, TWITTER AND SOCIAL NETWORK SITES
The main impact of SNS (Social Networking Sites) such as Facebook, but also Twitter has been in the area of patients and carers own usage, and to a lesser extent usage between staff rather than for communication between patience and Hospice staff. Hospices clearly recognise the significance of social media in areas such as fundraising and developing their public profile, but have not embraced their potential impact on clinical care.
Staff are also aware of the rapid increase in the use of SNS as against other internet platforms as places for the discussion of symptoms and suffering that act as a resource for patients and carers, both sites for information and sites for expressing themselves. They may encourage usage of such sites, and one nurse mentioned setting up a Facebook site for children. Staff also mentioned that, following various journalistic exposures, this is an area where institutions may have given explicit guidelines about the use of Facebook by staff members. These may include a prohibition on making negative comments in public about the institution but also a prohibition on the personal friending of patients. Though in some fields such as the care of children there may be grounds for re-visiting any such general prohibition.
Staff are increasingly aware that SNS have considerable potential for patients’ welfare. We are currently in a state of transition where SNS which were devised almost exclusively for young people are starting to migrate to older populations, now the largest growth area in Facebook usage. This may be significant as it is a means by which people whose symptoms include decreasing mobility can use such media to feel linked to relatives and friends. This is not straightforward since we found several elderly patients and carers who had tried SNS but were offended or shocked by the behaviour of grandchildren and quickly removed themselves from such sites. But there were also people who reacted more positively and for those under around 65 this seemed less likely to be an issue. Negative consequences included a story about a death being relayed on Facebook before most relatives had been informed by more appropriate channels.
For younger patients and carers the issue was less the potential in dealing with new disabilities and restrictions, and rather more the acknowledgment of something that has become so embedded in everyday life. For younger participants this could include Twitter as much as SNS. When individuals are undergoing chemotherapy they are susceptible to infection which may make it more difficult to socialise. Social media such as Facebook and Twitter become particular valuable as a way of avoiding a sense of social isolation. They are also effective in informing large numbers of people about updates when ‘it was becoming a bit of a chore to have to keep telling everybody the same thing over and over again.’ For younger users these have replaced the ‘round robin’ email. Although the focus is often on patients, staff noted how often it was carers who become especially reliant upon social support to alleviate their sense of anxiety and frustration.
One story in particular may stand out from our fieldwork as testimony to the importance of such sites. In this case a patient in their fifties who had not been on Facebook, but whose son introduced the site to his mother on the day her cancer was diagnosed as terminal. With a background in nursing, this individual was seeking to use her condition to contest the avoidance of dying as part of public discourse. She soon understood the potential for blogging about both her suffering and medical indignities and pain but also her striving for positive experiences such as final holidays with family. Almost every day she posted and others responded. Through the site she was able to resolve long-standing arguments between family members who were now encountering each other again. The story is long and detailed but suffice to say that the last time we saw her, just before her death, she made very clear that Facebook had transformed the period of dying from something entirely negative to something that had fulfilled all her positive ambitions with regard to being able to use the experience to share, educate, and uplift her family, friends and new acquaintances.
Although younger patients and carers are generally aware that they can divide their SNS into different categories for receiving different information, it was noticeable how few people choose to make use of this feature. This suggests that such issues of confidentiality are far less important to patients and carers than anyone had previously realised. One reason for this is that health services tend to concentrate on the individual or at most the family, while other projects (Miller 2011) suggest that people use Facebook to return to ideals of a wider community. There is also increased awareness and use of privacy setting by patients. We should, however, acknowledge that this is a field in which many people have anecdotes about indiscrete or unfortunate postings and accepting ‘friends’ they may later come to regret.
Much of this document is concerned with the benefits of new media, but we should equally acknowledge likely deficits. One is an emerging threat to staff privacy, although staff rarely mention this without prompting. Patients and carers today expect to be able to post on public forums all sort of private events and issues. This can include reports on their treatment by care workers and increasingly they may use personal names and personal details. A staff member noted that the actual names of doctors are commonly used in a particular Facebook discussion group. There are several websites for rating doctors. Given that the death of a relative is an area that often creates anger, resentment and blame we can predict that in the future care workers will be personally named online in a wide variety of formats from Twitter to SNS to blogging. It is extremely hard to remove false allegations on the internet even by those who originally posted them.
There exists legal redress for defamation which theoretically could protect care staff. But it seems reasonable to predict that this abuse of free media will eventually become so widespread and ubiquitous that it becomes practically impossible to take up every case. The situation is similar to other peer-to-peer and open-access developments in digital media, which corporations have tried and failed to close down. It is likely that care workers will need to develop thicker skins in the face of public accusation, as well, of course, as continuing to endeavor to behave in ways that do not attract criticism. Though the same ubiquity is likely to also create a growth in skepticism around such accusations, and if ever they are repeated in more formal media then legal redress will remain potent.
Staff, patients and carers are starting to become more aware of the use of Facebook as a memorial site, (see also Walter, et. al 2011 CDAS, Miller 2011). There is a distinct possibility that Facebook is at the start of what will become a revolutionary transformation in our relationship to memorialisation. Rituals and customs following death have largely followed religious custom which stress formality, but which are thereby out of alignment with the way the authenticity of a person is today generally regarded as expressed through informality. Consider, for example, the changes in personal photography from a period in which we expected to pose formally for any photograph, to today when the desire is almost always for spontaneous and informal expression.
Increasingly where the deceased had a Facebook site, the original question of the inheritance of digital property has been overtaken by the increasingly common use of that site as a place for informal posting and expressions of grief. The advantages of such sites are that they can include close and distant friends, more serious epistles mixed with humorous and anecdotal memories. People who did not hear about the death can still find a place to post later on, and the site remains open for significant anniversaries thereafter. This change in the conventional expression of grief may become one of the most significant benefits of Facebook to the general population. Social networking sites, Twitter blogs and other online media have also become important for bereaved family members who wish to maintain contact with the Hospice.
Bereavement is a major part of Hospice work but does not otherwise form part of this report, since it deserves discussion in its own right. Comments from carers highlighted some very relevant issues including negative effects such as where one husband complained that so far he has been unable to close down his late wife’s Facebook site – though acknowledging she would have preferred for its to be retained. People also noted that posting becomes intrusive and disturbing when it purports to come from the deceased! Facebook does allow this and in the future it may be worth hospice staff being informed as to how to help families deal with digital legacies of this kind.
THE INTERNET, BLOGGING AND GOOGLING
The Internet is more than its component parts, such as email and Facebook that are discussed elsewhere in this section. Today it is so diffuse that it is impossible to make any comprehensive statements with regard to its use and impact. Our main concern here is elements that add to the informational and expressive possibilities not covered in other discussion. Staff are well aware that today individuals expect to look up information on all aspects of medical treatment, symptoms and other related information and we include a recommendation in part two to help refine this process.
An interesting discussion arose around the concept of ‘Googling’ a patient, which so far remains rare. At first many staff seemed to feel that this could be inappropriate or might create problems for a ‘neutral’ assessment of patients. On the other hand staff were coming across patients who on occasion, seemed offended that staff are not acquainted or appreciate ‘who they are’ (particularly in the cases of well known figures in society). The impression is that ‘self-importance’ is not a rare property within the population and there was more chance of causing offence by failing to Google than by Googling. While some staff feel that this is inappropriate whatever the circumstances, others felt that it showed an interest in the patient and reported an enhanced conversation on first assessment. Getting to know a patient quickly and holistically is a key component of palliative care, and a Google footprint might just add some colour to the biomedical referral form. We believe this issue should be left to the discretion of staff, rather than being encouraged or banned.
The other side to the internet is as a site for personal and public expression or for chatting and sharing concerns. Staff were aware that patients and carers increasingly use a whole varieties of online sites as places for blogging, entering into chat sites and in other ways of sharing ones experiences. Many suggested that both public posting and the private diary may be a cathartic process and a vital support mechanism. Other staff intervene because they feel patients cannot distinguish between what they regard as helpful or harmful sites. We do not intend to comment on evidence for actual benefits of harm from online activities, since our research only investigated opinions of patients and staff, not the academic assessment of these media.
MOBILE PHONES, APPS, IPADS AND TABLETS
The issue here is more of the specific devices that are becoming available to patients, carers and staff and where perhaps the single most striking feature is that any discussion becomes out of date within weeks, as new products are constantly being launched. We have now probably reached the point where the commercial range now available means it is possible for the first time to try and determine the ideal compromise between portability, ease of typing, readability and other factors that would determine the best size of device for routine use by staff in the future. While the bespoke ‘toughbook’ seems to be gaining momentum in some Hospices partly though from its association with SystmOne (one of many patient database systems), it is generally preferable to turn to everyday commercial devices rather than the expenditures involved in commissioning bespoke devices, or anything that involves expensive commercial contracts (for attempts to create bespoke video-contact see various papers by George Demeris, e.g. Demiris et. al. 2011, and for the general potential of telehealth see Charness, Demiris and Krupinski 2011). We did not deal with the development of specific medical devices used for diagnosis.
Staff are obviously aware that smartphones are transforming the media landscape from a prior dependence upon bulky and fixed computers leading to debates about ‘mobile health’. The usual passions with regard to Apple against Microsoft or iPads and ultrabooks flow between work and leisure situations. Several staff swear by the BlackBerry facility for dealing with emails on the move. There is a welcome for the entry of devices such as the iPad where the user interface suggests that older patients, who are often technophobic, may find confidence and indeed delight in the use of some of these new platforms, which may be seen as more like television screens, are conducive to sharing photographs and, as touch screens and touch keyboards, may seem more intuitive and friendly. While some staff prefer to make notes in their car rather than while sitting next to the patient, it was suggested that using a tablet in the car could pose a security risk and this was better used within the patient’s house.
One generalisation from our research was that end-of-life patients and their carers seemed to enjoy discussing new media as much as anyone else. The most elderly patients can be highly technophobic, but this cannot be presumed. We encountered a 90 year old who seemed as giddy as a schoolgirl in her delight at her new iPad and had within a few weeks more than a thousand photos within the device. There is also an awareness that the culture of ‘Apps’ that are emerging with smartphones may provide the foundation for many new specific devices intended to help people with particular disabilities or demands (e.g.http://enabled.in/wp/android-apps-for-differently-abled/). In the future it may well be phone apps which are in the vanguard of new efficiencies in areas such as checking lab results, waiting times and accessing records. Smartphones seem to be evolving as a single point of linkage between many of these communications, and new platforms such as WhatsApp may have potential for bringing together small groups such as the family or all the professionals involved with a single patient.
The main potential for YouTube follows its evolution in recent years into the ideal site for short instructional videos. From showing how to use complex health devices to explaining how to put on a wig after hair loss from chemotherapy YouTube has been expanding rapidly as a teaching and training resource. The main potential authors would be staff, such as physiotherapists, or others who need patients to follow regular exercises or regimes. It should be obvious that a YouTube that can be seen as many times as possible, in which the staff member enacts the exercise, has considerable advantages over a static page with a sequence of stick figures, at least for those with computer access. The Hospice already has an active eLearning program which includes short instructional videos made by Hospice staff in order to teach basic techniques in caring. This can link with the general area of community informatics (for which see Gurstein 2012).
PART TWO - DIGITAL DIVIDE, THE RIGHTS OF PATIENTS TO REFUSE CHANGE, AND THE CONCEPT OF CONFIDENTIALITY
The majority of patients referred to the Hospice are elderly and include many who do not possess or use new media. Indeed, our research made clear that some of these elderly patients feel that one of the few saving graces of the fact they have a terminal illness is that no one at this point is going to impose upon them the usage of new technologies that they utterly detest! As things stand it is increasingly hard for people with impaired mobility to manage a bank account and shop without being pressured into online activity. The result is a digital divide which can, in and of itself, be oppressive. In such cases the ideal is for this burden to be returned to institutions such as banks supplemented by carers and staff rather than imposed upon a reluctant patient.
Nevertheless, each year brings a surprising number of people who had been thought technophobic into the digital embrace, and we should not make assumptions. Our 90 year old enthusiast for her iPad would be a case in point. In principle we would want to respect people’s desire to remain free from any pressures, but it may be reasonable to check that this abstinence is not merely ignorance, embarrassment or impediment preventing access for people who once given the opportunity are entirely grateful for the new facility. One patient who was set up with an iPad at home by a Hospice volunteer saw his world opened up and was able to replace unwieldy stamp catalogues with a global stamp collecting fraternity. He is reported to be no longer suicidal.
Similarly, we interviewed staff who dislike email, saw no advantage in having Skype with visual communication and prefer to write notes. But it is most likely that these new media are probably not transient technologies. We all use devices such as the telephone and television and recognise that today it is virtually inconceivable that an individual would wish to remain ignorant of these. Once upon a time the telephone was seen as just as radical and evoked just as much suspicion. While we have no idea when the internet and smartphone will become as ubiquitous, it makes sense to plan with that expectation. It seems unlikely that the current digital divides will last beyond another twenty years.
CONFIDENTIALITY – THE ELEPHANT IN THE DYING PATIENT’S ROOM
We start this section with a few extracts from a long account by the wife of a patient of an entirely different palliative service in another part of the country:-
My husband, aged only 54, has recently died of pancreatic cancer…. His wish was to die at home. At first the only point of contact was the Hospice nurse....The advice was given over the telephone without any written plan to follow and with increasing doses of morphine he became confused and I had to try and write a time sheet and tick off what medication he was taking and when. ….In the Hospice he became extremely anxious and restless constantly turning and moving around in bed, getting up, sitting down, and into bed again. ‘Terminal thrashing’ was how the nurses described this condition to me. But much of the thrashing was due to the fact that he didn’t want to die in this place. Back home nurses arrived, checked the pump with the drugs…. A Marie Curie nurse would stay during the night, a District nurse would come once a day to review the drugs, care assistants would come and wash him and change his clothes. The latter were provided by a plethora of different agencies with fancy names. ….The third night there was no Marie Curie nurse. Instead a private nursing agency was providing someone to spend the night. A personable young man arrived dressed in shorts and a T-shirt and carrying a laptop. He explained that he was the son of the owners of the agency providing emergency help. During the day he was training to be a plumber! Each day a different nurse came to review the drugs and each day the dosage was increased to relieve the pain and the distress. …..The doctor eventually arrived at 3pm, his local GP. Before doing so several telephone calls were made to the house. He did not know the name of the village we were living in or how to get to the house. Two days before the death the Hospice nurse had told me he wished to donate the cornea of his eyes for transplantation. I had to find an undertaker and once a doctor had certified the death they would have to come out immediately to take away the body.. Four hours later the Hospice nurse rang to tell me that cornea transplantation was not possible because he had had chemotherapy within six months of the death. I had made the arrangements with the undertaker in vain. The night my husband died a Marie Curie nurse who was able to administer drugs stayed with us in the house. After the death she said that I might go to the surgery around lunchtime the next day to pick up the death certificate. The following morning there were two telephone calls from the surgery. The district nurse requested that I return the syringe pump and other equipment. A doctor said that I could not be provided with a death certificate for five days because his personal GP was only part-time and would not be in until then, and only she could sign the certificate. The irony of all this was that my husband had only seen hisGP on one previous occasion because whenever he tried to make an appointment she was not available and he had to see another doctor. I went to the surgery to return the pump around lunchtime as requested only to find it shut for staff training. Etc etc.
This account is critical because it highlights a problem that every single member of staff recognises and discusses in our interviews. This is the problem of a lack of communication between the various agencies that may be responsible for any individual patient. The single most common issue was simply that a patient assumes that all those who visit and see them in a capacity of professional care would communicate with each other. So that if a patient tells a medical staff member about some new symptom, or their treatment preferences, or some other significant detail, then they have thereby informed all those people that they are dealing with. They are not expecting to repeat every piece of information to every different person they see. What is clear is that unfortunately they cannot make these assumptions. There are several reasons for this.
Firstly there is the sheer number and diversity of those involved. A patient in an end of life situation is likely to encounter many different concerned individuals: an oncologist, their local GP, the local Hospice staff, a Hospice at home facility, a Marie Curie or Macmillan nurse, a district nurse, a local hospital, social carers. If they use private health care, or have some complications in their medical condition this may expand to many more. The number of people visiting tends to rise as illness progresses with patients desperately trying to keep track of a bewildering array of individuals and appointments through scribbling on calendars on walls or next to beds.
Much of this is inevitable and the services offered are often complementary and vital, for example, the Hospice that takes in-patients is separate from the service that supplies night care at home, but both are needed. It is unlikely that any recommendations we make would lead to a decrease in this diversity, it is better that the situation is acknowledged and solutions found for improved co-ordination and communication. A similar point was made by Leadbeater and Garber (2010) ‘People need a stable relationship with someone who can help them. Often people can get a blizzard of disconnected services, from community nurses, the GP, personal social care, social workers and others. What they want is a continuous, supportive relationship with one person to whom they can turn for support and advice.’
Two obvious points follow. This carer narrative highlights the need for improved co-ordination of care. For instance there is a need to flag one individual who is clearly designated as the ‘hub’ or patient ‘champion’ or ‘care lead’ with ultimate responsibility for coordinating patient care and their records. If a patient is seen by a district nurse there should be a‘red file’ to which all those who visit contribute at least contact information. Crosscare has a section where other carers can be entered if the staff are aware of them.
The second point is that, while a diversity of carers may be unavoidable and a need for improved co-ordination vital, the other single most important factor that seems to lead to this kind of unnecessary suffering is the failure to communicate between professional care workers. It became quite clear from our research that the reason for this lies in the hugely exaggerated focus upon confidentiality and the lack of clarity and understanding of this concept.
Every single member of staff could recall situations where a patient’s welfare has been significantly impacted by the failure of care givers to exchange information about patients. Finding out a patient’s medical history could become a kind of detective work based on a creakingly old system of letter writing and faxes. ‘So I will see a letter and there is a cc to St. Albans hospital and I will say “Why were you there?” And they will say “to see the diabetics team”, and I am like “Oh, so you’re diabetic.” Knowing about diabetes is crucial for a doctor prescribing medication.
By contrast, not one single member of staff could recall an instance where a patient had suffered significantly because of a breach of confidentiality in the use of media communications to share medical information between professionals. Such breaches of confidentiality that do occur are inevitably verbal, such as gossip or discussing patient records when in the presence of a relative. But even then, the fact that an inappropriate person gleaned some information the patient would prefer to have kept private was not, of itself, a cause of the kind of pain, suffering and failure in appropriate care that results from the lack of information exchange.
Staff could envisage or had anecdotes about harm as a result of breaches of confidentiality such as information about HIV or terminations. But always as verbal rather than technical lapses, and the key point is that these represent a few anecdotes, rather than events they had themselves participated in. In stark contrast, Hospice staff had many, many stories about requests they themselves had made for basic information about patients that were refused by a wide variety of institutions ranging from GP surgeries, to hospitals to x-ray departments. An example was a palliative nurse working at weekends to cover patients from another palliative team, who was not allowed to access the records of these same patients. Doctors talk of routinely having to administer to patients without having been allowed access to those patient’s medical records. Noting, not only that this destroys their reputation with patients, but that it has inevitable consequence for inappropriate diagnosis and treatment.
This is fully confirmed by patients. As one put it ‘I feel that it is incumbent upon me to be very well informed on all aspects of my medical information and history because you can’t expect that new medical people you see will understand all of that. So for me I am in the middle of all that—joining up the dots. It would be a relief to know that that information was accessible to all parties. When I go to the breast clinic I see one file, when I see my oncologist I see another file and that’s not taking into account anyone I might see here, or my GP, or the guy at the Royal Free. So I know there are files about me all over the place but they only show one aspect of my story. So I feel I always have to be a safety net to make sure they don’t miss something. So if they don’t know I have had this done over here, they might miss something. The problem is that since I am not medically trained, I don’t have the knowledge to understand all that medical information.’ …I want the medical people to know all about me, I just don’t want other people to know all about me…What is at the heart of this, as a patient, is that you want to survive your disease if possible and be treated effectively. So information has to be available to the people that treat you.’ She went on to note that the situation was even worse for her elderly father and because each medical Trust seemed to have information that they also failed to share with each other.
This obviously reflects a degree of fragmentation very different from an ideal of more systemic or ‘whole person’ approach to the organisation of care. This also reflects the fragmentation of medicine into specialised silos sometimes just responsibly for one body part or illness.
But most immediately, it demonstrates that health services have become unreasonably reliant upon an assumption of capable and competent patients to compensate for this organisational deficiency. The underlying cause of this problem is immediately evident when speaking to junior staff, who discuss the issue of confidentiality as one of personal fear. They fully believe that an infringement of these regulations about confidentiality of patient records could lead to the loss of their job even without significant negative impacts upon patients. By contrast, no one suggested that a failure to share information about a patient would lead to a loss of their job even when this has had a significant negative impact upon patients! They often talked about confidentiality of patient records being drummed into them as a concern throughout training.
We are forced to the following conclusion. Through making a fetish of the concept of confidentiality British health services may be causing more harm to patient’s welfare than some of their illnesses, even though these regulations were established to help rather than to harm patients’ welfare. We did not research this, but it may also be that restrictions which stem originally from fear of litigation have caused such a divergence from a proper focus on the ultimate welfare of patients that it may be partly responsible for an increase in complaints and litigation. Hospices which tend to be more thoughtful about the issue seem to attract far less litigation and promote better sharing of patient related information (other than very personal details that the patient has requested not to share). In palliative care there seems to be a presumption that sharing of the patients physical and psychosocial condition is appropriate, once checked out with the patient, whereas other services assume an ‘only share as needed’ policy, with a deep suspicion of electronic sharing. Another contributory cause of this over-emphasis upon confidentiality may be pressure from commercial firms wishing to promote devices that are used to protect data security.
The upshot of all this is a climate of fear which seemed to be the main reason that almost all junior staff believe that the use of new media is prohibited even though they have never seen evidence that such prohibitions actually exist. But the blockage on data applies also to senior staff. As a Hospice doctor noted ‘It’s a nightmare getting things like scan results or blood test results. We have to rant and rave.’ A typical example given by a doctor was that ‘So last week we needed the results of a CT scan. So in order to get this J had to ring the GP and ask them. Then wait because they have to ring her back to prove it was her. Then wait again because they need to give her a fax number so she could in turn send a letter to request the scan. I needed that information at 10.00 in the morning not at 4.00 in the afternoon, which meant I couldn’t do anything till the next day. Which meant the patient lost 24 hours. She concluded ‘Confidentiality is important but the key point is the patient. We are all in medicine to help care for patients and make them better, and the moment when the process starts becoming a danger to them we have lost sight of things.’
Some of this may be traced back to the Caldicott Committee (1977, see also Dept. of Health 2003) which seems to have regarded the exchange of patient identifiable information as axiomatically bad, putting the onus of requiring staff to prove it was absolutely essential. Today we need to challenge this and recognise that professional sharing of patient’s medical information is axiomatically good and the onus should be on evidence that it is harmful. Promoting best practice should be about sharing data rather than restricting information.
One of the most absurd consequences of this conservatism with regard to confidentiality has become the retention of the fax machine as a primary means of communication between Hospices and various NHS institutions. The fax is testament to the negative effects of this cult of confidentiality upon actual media usage. In practice all staff regard the fax as the least safe, least reliable and least efficient means of communication. One member of Hospice staff calculated that perhaps 10% of her time is used up in trying to fax. This was partly because of the unreliability of these machines, which includes feeding them, checking all documents have gone through, not knowing if they have been received in full etc. The fax is also regarded as notoriously unreliable, often going to the wrong person, and being received in a place where they can be seen by others than by the intended recipient (rules about the siting of fax machines are routinely flouted). A doctor stated ‘sometimes you even have to block their (the patient’s) name out, and you are just hoping it’s the right person that’s picking it up’. Interviews provided a veritable deluge of anti-fax stories and frustrations. Compared to the fax, new media such as email and texting seem to be models of reliability, precision and targeting to the precise and intended recipient. As one doctor suggested - the fact that GPs, without regard or question, accept a life of faxes and letters in work practice that they would consider anachronistic and inane in their private life was in some measure a sign of an exotic culture or devoted adherence to custom that would be of interest to an anthropologist. We concurred.
Our evidence also suggested a strong association between this issue and professional hierarchies. It was suggested that those in more powerful positions, such as a surgeon, would in many cases freely give out their private mobile numbers to all patients, while the most junior nurses would not even give out the numbers of their work phones. This may be partly because of differences in self-confidence, in relative fear of being blamed, in the ability to afford risk and possibly that patients were more likely to harass nurses and feel intimidated by high status surgeons. The issue of confidentiality should not be confused with equally serious issues about maintaining work boundaries and ensuring the security for Hospice staff, both topics often discussed by staff in relation to opening up media channels with patients and staff. For this reason our proposals, discussed below, include a charter to protect staff from inappropriate use of technology.
We also fully recognise there is a duty to protect patient’s records, and that confidentiality is an appropriate and necessary concern. But in all the instances we heard discussed, this would have been be secured with a simple rule that professional staff do not discuss patient’s data with anyone who is not a relevant professional or the patient themselves. This is simply not a factor which should impede giving full access to medical data to relevant clinical staff.
There are two sides to such information exchange, that of patients’ preferences and that of their medical records. The most promising development in dealing with this problem may have been boosted by the results the Department of Health’s first national VOICES survey of bereaved people (22000 bereaved carers responded and many commented on the poor co-ordination or care and non-existent communication between services). This has provided additional impetus for the development of EPaCCS (electronic palliative care co-ordination systems), coordinated registers to capture preferences and decisions of those deemed to be in the last year of life (National End of Life 2012). One example is the Electronic Palliative Care Summary, such as has been piloted in Scotland (Scottish Govt), for example as part of their Living Well, Dying Well program. This provides (once granted patient consent) twice-daily updates of patient information from the GP made available to out-of-hours services, A&E and in the future the Scottish Ambulance service. It has been well reviewed in assessment (Hall et. al. 2011) and is also being recommended for the Irish medical system (Lynch 2011). The EPaCCS systems seem particularly effective with regard to dissemination of patients’ preferences and for assisting people involved as out-of-hours services, though it would need further extension to deal with the range of staff and issues that has been identified here, and a more direct confrontation with the culture of confidentiality will still be required.
There are other factors which also seem to bear on the problems of information exchange. One that is of considerable concern is the continued incompatibilities between computerised database sets such as Crosscare which is now commonly used in Hospices and SystmOne commonly used within the NHS services. Again an assessment of these databases was outside our remit. Generally they are a welcome replacement to paper records, though one doctor suggested they lack the more personal narrative about patients. They could also be more seamlessly integrated with new media such as email. But, again our impression is that the main barriers are cultural rather than technological. Staff noted that a key factor in practice was the personal relationships involved. Information flows much better when the staff have met or have known each other for some time, and it was suggested that, for example, an occasional Skype with a district nurse might help put faces to names. Many staff suggested that technological incompatibilities are blamed or used to legitimate problems with are essentially cultural or relational.
Another solution might be to create a kind of common-sense criterion for distinguishing between potentially harmful consequences of the introduction of new media as against mere conservatism that masquerades as a legitimate reason for not changing. We suggest the following:- Are the issues raised substantially different from those posed by the current usage of the telephone which has been established as a medium of communication for decades? For example, one of the most common issues raised about a new media, whether Skype, Email or Text is the fear that a patient might record the exchange for future use as evidence precluding informal and more confidential conversation. But it has always been possible for a person to tape record a telephone conversation without us being aware of this. Indeed phone hacking is the subject of one of the largest and most publicised media scandals of recent years. Yet no one is suggesting that the health services abandon the use of telephones for that reason. It is a risk we simply bear because the advantages of being able to use a telephone are so evidently overwhelming. This is not therefore a sensible reason for banning or preventing the spread of new media. This would be true of many of the reasons people give by health professionals avoiding new media.
Furthermore there is another kind of digital divide which has not yet been broached. A woman in her thirties coming to the Hospice with breast cancer is likely to be living her life through text and email and smartphones with young children who are still more dependent upon such devices. Whether as patient or carer, for her to be faced with a medical profession that refuses to acknowledge everything that she regards as routine, efficient and part of her familiar world is creating a new digital divide between a growing number of patients or carers and their care providers. This refusal to engage with what many patients regard as ‘real life’ will increasingly alienate that population from professional services and increase their suspicion of providers as distant and unresponsive, at a time when trust in professional and public institutions is at an all-time low.
PART THREE - EMERGING INITIATIVES TO IMPROVE CO-ORDINATION AND COMMUNICATION
The push towards honouring preferences for care at home means that multiple care organisations will be involved in supporting patients and families, and the risk is more scenarios similar to the case study above. There is now a recognised need at commissioning level that the experience of care will only improve if better coordinated, and various initiatives are emerging to address this.
An essential element to co-ordination however is how different agencies communicate electronically with each other. So although there is a will to co-ordinate, there is less of a will to communicate, unless the issue of data sharing, confidentiality and ease of transfer of information is addressed.
For instance the ‘Co-ordinate My Care’ project in London is a web-based solution accessible to all organisations providing access to a Palliative Register of patients, containing key clinical information such as where someone’s preference for care might be, but there is still no access to the holistic record, significant conversations or biographical narrative.
It is also important for charitable hospices, operating outside the NHS, to obtain ‘information governance compliance’ status to gain access to the NHS IT system through what is termed the N3 spine. This would be necessary to join an initiative such as Co-ordinate My Care. The process for obtaining this is described in https://www.igt.connectingforhealth.nhs.uk/. Hospices can self-certify at level 2. In some ways this process has remained limited and perhaps too bureaucratic, partly because of its reflection of confidentiality issues, and we must acknowledge the much wider and expensive failures of earlier attempts at digitalisation in the NHS.
Many palliative organisations in the charitable sector are individually moving towards electronic patient records. The most recent digital advance at the Hospice has been the move to Crosscare, an electronic patient record system and all staff agreed that this had gone smoothly, and with a few caveats, was a marked improvement and a clear gain in efficiency in their work. However, Crosscare does not easily ‘talk’ to the NHS record systems and therefore there is a situation where St Francis staff now have remote access to patient data when on call. But no other services who may become involved with their patients can access this vital information.
The Hospice and other local hospice providers have made proposals to the local health commissioners with regard to hosting co-ordinating functions such as a telephone triage, rapid response services and a 24/7 staffed centre which ideally could also come to be the repository of a good deal of collective information, but many technical and conceptual barriers to data sharing will need to be overcome.
The technical issues around the failure to communicate patient data are complex but not insuperable. The solution to improve communication of relevant patient information is unlikely to lie in the absolute resolution of any one of the underlying causes which would be too utopian and long term, rather it is through encouraging several trends many of which are already being trialled or discussed as above. In the longer term it might be sensible for all hospices, GP surgeries and other care institutions to consolidate around a preferred database. Though ideally this should in turn migrate to free software based on Open Access systems. A cloud-based system should allow for complete remote access. The development of EPaCCS (electronic palliative care co-ordination systems) and the creation of hub points for patient information will all help in this consolidation.
Most of the digital advances above relate to improving communication between agencies, rather than between agencies and patients, or enhancing the digital capability of patients. These dimensions need to progress simultaneously to really exploit digital potential in healthcare. There are, however, a few interesting developments exploring ways to improve digital communication and capability of patients for instance the Magic Mouse project led by Age UK using IT volunteers http://www.ageuk.org.uk/gloucestershire/what-we-do/magic-mouse-computer-sessions/.
The other key driver to promote new ways of reaching patients relates to capacity and resource limits. Harnessing technology to allow clinicians to assess and review patients at home or in other institutions, without travelling, is prompting ideas such as virtual wards and ward rounds, and Skype reviews of patients at home.
But above all there needs to a shift in the balance between the overarching duty of confidentiality to the patient and the appropriate sharing of clinical information in order to improve care, rather than hamper care. Patients assume, rightly, that information will be shared, and trust their health professionals to do so. There also needs to be a rapid deployment of new IT such as email and texting with phasing out of fax and letters. Together, these actions will shift the repository of medical information from patients to medical professionals, which is where it surely belongs.
PART FOUR – PILOT STUDIES AND NEW INITIATIVES
1) PERMITTING THE USE OF IT SERVICES and NEW MEDIA
The initial import of the previous section’s concern the liberalisation of media usage and the provision of some facilities none of which should imply significant additional costs. We would expect that any Hospice by this stage would provide convenient wireless broadband and 3G telephone services to all in-patients. A spare laptop for patients without their own computer would seem reasonable. In addition we suggest a laptop with webcam is available to all staff within a private room to communicate with patients who prefer Skype to ordinary phone calls. Given the falling prices of basic computing, it would also seem reasonable that all staff should expect to have computer access for their routine work. Most of our proposals should save money, e.g. in staff time and transport rather than cost money.
But given the issues we have raised about confidentiality it seems even more important at this point to simply issue formal permissions to use new media than to increase IT facilities. The research showed clearly that many junior members staff inhabit a culture where they assume all new forms of communication are forbidden and could lead to a disciplinary process. They need to actually see something that states clearly that this is not the case, and that unless told otherwise they should assume that the use of all new media is to be encouraged in order to take full advantage of the ways these connect them to patients and improve patients welfare, this includes Skype, email, texting, Googling, blogging, and Smartphone Apps where appropriate.
They should also be reassured by the charter (see below) which intends to protect staff against abuse of these media by patients. We assume that Hospices as other organisations will continually consider the efficiencies of new IT facilities for their own internal organisation such as collective diaries or automatic transcriptions of voice, as these become inexpensive and reliable.
2) PROPOSAL TO ESTABLISH A ‘PATIENT IT INITIATIVES’ WEBSITE
Replacing top down IT implementation with clinicians exchanging ideas learnt from patients.
This is perhaps the single most important initiative to derive from this fieldwork. A key problem in health service usage of media is the tradition of a top-down approach. In the past a researcher might have suggested a new scheme or device. If accepted this might be developed by a major corporation such as Microsoft and then tested and sold back to health services at considerable cost. The issue is not just costs, which could be considerable, but the fact that inevitably a new device such as a bespoke Videocam will appear clunky and dated by the time it is established in usage.
We live in an unprecedented time with regard to new media. Every six months the smartphone gets smarter, new apps appear, internet sites are established and social media goes through some change. Even more important is the evidence that the creativity is moving from producers to consumers and several of our routine technologies, such as texting, spread to populations as unpredicted appropriations by ordinary users. Furthermore, it is even more likely that those with special needs and their families will, from now on, be the vanguard in adapting ordinary commercial media to their specific requirements. All of this is demonstrated in the sections of this proposal that discuss patient usage of new media.
Given this situation we need to replace top-down IT innovations, often involving extremely expensive procurements from commercial companies, with usage that learns directly from patients and the everyday IT devices they employ. Establishment of a ‘Patient IT Initiatives’ website(or Facebook page) is proposed, in which health care professionals, whilst retaining the anonymity of their patients, post short descriptions of their observations of patients use of IT devices, specifically outlining the positives and benefits of these devices to the patients welfare. Other clinicians who read these postings would be able, in turn, to repeat them as suggestions for their own patients who had similar issues or problems to solve. In staff who have their own ideas and initiatives can add these to the collective pot. As well as successes this may be a useful site to report on failures, feedback and other experiences that people in similar situations might learn from.
This scheme bypasses all forms of bureaucracy and all those seeking to make profits out of this sector and, in effect, adopts the ‘peer-to-peer’ and ‘open-access’ initiatives that have become the vanguard of our new digital age. It is also the only mechanism that can keep with the rapidity of changes in usage and technological developments. Our intention is to create a small pilot version and hope that this could eventually be expanded into a nation wide initiative
3) PROPOSAL TO ESTABLISH AN ‘IT BUDDY’ SCHEME
To use volunteers to help patients use IT in their own homes
This proposal is to establish a support scheme whereby volunteers working for the Hospice visit people in the home to help set up or maintain such computer facilities as they desire. This might include, for example, downloading information and training in the use of Skype, removing unwanted spam and viruses, showing how to use voice activated software, helping find specialist software and equipment for those with physical disabilities. The volunteers would visit at the behest of the community clinicians who have identified the need. Without wishing to assume gender stereotypes, and while this would be open equally to males and females, it should be noted that currently the Hospice volunteers are overwhelmingly female and this scheme might attract males who have not yet identified a niche within which they feel able to provide Hospice support.
Staff noted that typically younger carers and relatives buy IT equipment as something concrete they feel they can ‘do’ for elderly patients and want to teach them usage since again it gives them something to do, and even volunteers look for tasks beyond making tea for patients that can be fulfilling. So in some cases the potential resource is there but needs more systematic direction, and induction into the more appropriate slow, sustained and gradual modes of help that do not overwhelm patients who may resent enforced IT assistance.
4) PROPOSAL TO ESTABLISH A‘NOTES TO SHARE’ SCHEME
To supply devices which allow care workers to look up and create patient’s notes in situ.
The ways in which nurses make notes about patients seems to vary widely. Nurses voiced feeling constrained in making their notes by hand during consultations and, at the same time, experiencing difficulties in recalling the information of several consultations at the end of a day, or mistakes creeping in through typing up hand written notes. A doctor who did not have access to Crosscare at home noted that she could have a phone call from a patient at 4 a.m. at which point she has no way of finding out anything about them. Or at best goes to the Hospice to look at their notes ‘At the moment I turn up at the patient’s house looking like a complete numbskull because I have tried to memorise everything. An urgent priority seemed to be a device that could both give access to real-time patient data onsite and allow for making notes onsite.
Opinions as to the solution to this problem vary. Some feel patients are comfortable with a nurse who has a device to hand in which they can both type notes and look up information. Other nurses feel that patients find such devices intrusive and impersonal and a barrier between them. They do not want to type notes in front of patients. The latter would be comfortable with a phone like device such as a Galaxy Note, or with a tablet that stays in the car but is accessible immediately after the session. Most staff, especially younger staff disagree and feel that hand written notes are just as intrusive, are more likely to result in subsequent error and don’t present the same opportunity to share with patients the joint creation of a recorder looking up of further information. Everyone favours a device that makes patient’s notes immediately available and also allows the immediate updating of those notes without being re-typed later. As we have suggested above it should be possible at this stage to determine the ideal size of device, that fits handbags, is easy to type on and has readable text. In general it was felt a tablet is better than a laptop in that it doesn’t appear to impose a screen between patient and nurse. It is likely that patients vary considerably in this regard and staff should be given discretion to respond sensitively to what they deem to be patient preference.
Symmetrical to the issue of typing information is looking up information. Many staff now regard devices with internet access as a welcome additional presence in their discussions with patients and carers. The ability to look things up together helps create a more egalitarian relationship with patients compared to the traditional dominance of health professionals. Physiotherapists and others recommending equipment and aids are often faced with the question ‘where can I get one locally.’ Staff, patients and carers may jointly look up information about medicines, treatments options, and a wide variety of other symptom and welfare concerns such as relieving stress, improving sleep and even self-help modules. They may also jointly consider specialists and the choice of medical experts. They are aware patients will use the internet for these purposes anyway and feel that doing so together can help create a more collusive and positive relationship between patients, carers and staff. The use of a responsive and easy to use device by the clinician may spark interest in the patient as to the potential of such devices.
5) POLYMEDIA AND THE PRACTICE OF PATIENT CHOICE
To help reflect patient preferences in media selection.
The term polymedia (Madianou and Miller 2012) reflects a radical change in the media facilities that are now available to most people in the UK. Previously people had use of very few media such as the letter and the landline, and were conscious of the cost of any individual act of communication. Today most people have access to a mobile phone and a computer. Both are most commonly subject to pre-paid plans. The result is that any individual may have a dozen different means for communicating. Secondly an individual act of communication is no longer experienced as a direct cost. People no longer assume that the decision to use this or that media is a result of either access or cost. A consequence of which is that today people may judge each other’s choice of any particular media more in terms of things like emotional control, power and morality. Why didn’t a nurse say this on the phone when I couldn’t take notes, or why did they delay by sending a letter when they could have texted? Polymedia also means that individuals rarely today rely on just one media, they configure the various platforms into combinations that work best for them.
Why does this matter to the Hospice? We need to be curious about individual choice and cannot assume that we know which media suits each person in every situation. Our research has shown that patients vary considerably as to which media they find helpful when receiving information. For example, some individuals prefer to receive painful and/or complicated information through email rather than being in a face-to-face consultation. An email might provide space to assimilate and process what is being said. The evidence is not merely from patient interaction with the Hospice but also from our study of their communications with their friends and relatives. We find many cases where patients and carers will choose phone, email or other media to inform even those as close as children or parents about being diagnosed with cancer or as terminal, deliberately avoiding face-to-face. The choice of media can be an important gesture of power and control. In a relationship where patients are almost always in a submissive powerless position, almost anything that gives them some measure of power and control will help reconcile them to the developing relationship with their carers, and getting the media of communication right maybe one of the easiest options for facilitating this core relationship.
Our aim is that we should not disenfranchise any patient from any such preference. We propose a small addition to the initial set up meetings that routinely take place between staff and patients on first encounter. Staff should routinely also include a question to patients about which media they prefer to use for different kinds of correspondence, such as news about their prognosis or information as to the regime they are expected to follow, the organisation of future meetings and later on preferences for family members in bereavement. This information should go into patient records (Crosscare) and be disseminated to other professionals dealing with this patient. It is also obviously preferable that staff retain an openness to the likelihood that a patient will change their preferences as they gain experience of such communications and that the question of preference should occasionally be returned to in order to ensure that records remain up to date. We have already noted the potential of texting for the subsequent monitoring of day to day conditions that allow for the further exercise of patient choice.
It follows that staff should try to respect patient’s choices, though obviously only where these also seem reasonable with respect to the needs and efficiencies of the staff. There is no expectation that any staff should read an email at 2.00 a.m., only that a patient is free to write one at that time (having a reassuring auto-response with emergency alternatives, may help). But agreeing an individualised portfolio of communication fits very well with the ideals of holistic care orientated to the needs and choices of patients and thereby aligned with the wider ambitions of the hospice movement.
6) THE CREATION OF A PATIENT/CARER CHARTER FOR NEW MEDIA USE.
To protect staff from abuse of these media by patients or carers.
Apart from the fear of retribution from health authorities for unlicensed usage the main concern of staff is that the spread of new media might leave them open to various forms of harassment from patients or carers, might blur requisite borders between hours of work and non-work and the boundaries between professional and non-professional relationships. The principles at stake here are not, however, unduly complex, and generally reflect values and expectations held throughout the community. Much of the most problematic behaviour, such as stalking of nurses by male patients, is already subject to legal prohibitions.
Nevertheless new media provides a technological facility that are simply so easy to employ that they may create a temptation to cross boundaries, and it makes sense therefore to draw up a simple charter of what the Hospice regards as appropriate and inappropriate use, to be given to patients and carers. One part of this should state clearly that where a patient is deemed by a nurse or other member of staff to have used the media inappropriately then that member of staff has the right to terminate that particular channel of communication, for example, to set their work phone to no longer receive texts or calls from that individual. Hospices will vary to the degree to which they feel it is necessary to have patients make indirect contact through the Hospice rather than directly to the work phones or work emails of staff. Our recommendation is that Hospices experiment with allowing direct contact and revert to indirect if and when they find this problematic. Since we hope that with the support of such a charter direct communication should not be problematic and will save time, facilitate positive feelings of trust and is generally preferable to indirect contact. The relevant organisations may want to more explicitly re-define confidentiality as part of a new media policy in order to clarify and current ambiguities with staff.
7) PROACTIVE EXPANSION OF PATIENTS’ SOCIAL RELATIONSHIPS
Where staff help patients to pre-emptively counter the inevitable declines in social support as illness progresses.
Our main region of study with regard to patients and carers is a village. Villages tend to be idealised as the sites of traditional community. Our evidence is that if this was ever true, it is certainly not true today. We find patients who were born, schooled and lived in the village, but as elderly cancer sufferers, today they know only two other people in that same village. Neighbours cannot be presumed to know each other. Perhaps most shocking is the number of staff who have noted that relatives and friends actually stop contacting the patient, reflecting an avoidance of acknowledging terminal sickness. While this is hugely variable, the overall evidence is that the social universe of the elderly can often be remarkably small, especially those of older males. Institutions such as the church serve relatively few congregants these days and the people one meets at the pub do not usually also visit the home. This is the starting point, but as staff note, once a patient is ill and loses faculties whether from immobility or dementia this social universe can shrink to nothing. The evidence is there with Hospice patients where even the children may be absent at the funeral. When a spouse loses their lifelong companion this is the worst time to try and introduce new media to facilitate social contacts as they have also lost hope and confidence. The staff can predict this, the patients cannot. As one nurse put it ‘I have been a nurse since 1980, and I can honestly say that out of all the ways in which this can help, it is with the unbelievable loneliness of people. It is so tragic seeing patients who have lost someone they have lived with for 60 years, once they have died. Because they have nobody going into that house, except once a year.’
For this reason it seems vital to pro-actively foster wider social relations that can turn into social support later on in the trajectory towards death and bereavement and this should be done at the initial assessment. As this document has shown, new media have huge potential in this regard. An older person who can text, or a younger person active on Facebook, have unprecedented means for retaining connectivity with others. But teaching new media to the naive takes considerable patience and commitment for the trainer, and confidence and ability in the learner. This may be easier when there are both partners still present and a reservoir of hope and self-confidence. As the nurse quoted above noted, trying to cope with learning to live alone and with new media at the same time is a non-starter. Again we have no desire to impose new media on the unwilling but there are grounds for explaining to new patients why these may become essential later on, even when this is not something they particularly want to engage in.
The issue here is whether this should be a responsibility of Hospice workers whose training is in medical welfare not social connectivity. A Hospice manager suggested that staff should only ever point out such problems to IT volunteers. It should not be a direct concern for highly trained medical staff. But some already do intervene because they argue the lack of wider social support ends up creating far more work for them in the long run, which makes such interventions cost-effective for the Hospice. A nurse talked of a patient who now can only move one finger and her eyes, but has retained remarkable autonomy through her iPad. She remarked how fortunate it was that this skill with the iPad was already in place since it could never have been introduced at a late stage.
8) THE PROVISION OF AN e-LISTENING/CONSULTATION SERVICE
A back-up service for people wanting to make contact through digital media.
This is based on a service that began five years ago at the Iain Rennie Hospice and followed advice from the Samaritan movement. It is directed mainly at people out of the area, or young people who prefer contact through digital media and is orientated towards bereavement counselling but could easily work for care for the dying also. This forms part of the Hospice website. To some degree the immediacy of support it offers has been taken up by social network and other peer group internet facilities, but the Hospice reports a small but steady usage, which tends to peak during the pre-Christmas period.
Some further possibilities might include the provision of anonymity for those who wish to express feelings that are generally regarded as illegitimate (e.g. wishing for the death of another person) or illegal and where it is possible that being able to express such fears and desires may help prevent their actual occurrence. A patient who cannot express themselves face-to-face for social reasons, might do so under the cover of an e-Listening service as in one case ‘He is a patient, but he says about two words during every visit, because she (his ever present wife) says everything. Whenever I – you know – I’ve done that face-to-face thing direct. He completely relies on her. It’s not that he can’t.’ An e-Listening service might also work for carers who are often the ones most in need of sites for self-expression. In addition, if sufficiently resourced, a Hospice may consider having an ‘ask the doctor’ provision on their website.
As with email and texting e-Listening provides a space for people wanting to write about their feelings at night. It can provide an outlet for people wishing to ‘rant’ or express anger. Finally it could be considered as a site also for staff and perhaps carers to exchange problems and anxieties for discussion. To quote “I’m really struggling, he won’t eat his food”, and “I’ve prepared all this lovely food, and he’s not eating it.”
9) RECOMMENDATION OF INTERNET INFORMATION SITES
Kite-marking the profusion of online resources available to carers and patients.
From the point of view of health services, there is a vast range of information that could be invaluable to patients. It seems a real pity that there is no recognised international ‘kite-marking’ scheme that helps users of the internet to distinguish between established medical information based on research and evidence (backed by governments and medical authorities) as against sites that are either entirely ill-informed or most commonly hide a commercial imperative or interest beneath the façade of pure provision of information. The normal process of ‘Googling’ for topics fails to differentiate within these very different kinds of material.
As a result medical staff are increasingly having to spend time combating the profusion of ‘treatments’ that colonise the internet, largely from commercial interests. On the other hand the same process means that patients may be better informed and discussion can proceed at a much higher level than before. Since it seems unlikely that we will see kite-marking any time soon, it seems reasonable for the Hospice to provide all patients who use the internet with a list of recommended sites that they feel patients would benefit from. Such a list imposes no restrictions and patients may continue to browse as they see fit, but this acknowledges that the internet is not a neutral space and helps combat the increasing impact of commercial sites posing as medical information. A patient suggested it might be helpful to also indicate the degree of difficulty in terms of medical knowledge expected by these sites. One of our final interviewees was strongly opposed to suggestions of this kind. She argued that Hospices can easily be tempted to think they know best about every aspect of patient care, and this leads to a ‘nanny’ mentality creating a situation in which ‘dependency corrodes’ and that fails to respect patient’s competence and autonomy. She felt that the Hospice’s in time and money would be better spent in spreading their core care responsibilities to the wider population. The counter-counter argument is that the huge commercial and other powers behind much internet content mean it is quite unreasonable to expect sick patients to take responsibility for discriminating good and bad and that professional workers should take responsibility for at least expressing an opinion that helps direct patients to that content which they feel has merit.
10) DIGITAL LEGACY APPS
Programmes and apps that deal with online materials or provide post-death messages
The Hospice has had discussions with individuals who have been developing specific Digital Legacy apps which are designed to help patients think about their future and capture their wishes digitally. Staff who have used such an app with patients in the consultation have found that it helped them in initiating conversations about intimacy. Another patient said that “I haven’t been able to talk about my funeral until I used the app, it gave me a way of talking in an indirect way with my husband without actually having to voice the ‘death’ word.”
There is also the concept of digital inheritance. This might range from who patients bequeath their digital music archive to or whether they want to record their voice with messages to posterity. At this point Hospices might decide they want to trial particular devices or merely to inform patients of the range of potential apps that they may not previously have been aware of. Increasingly there will also be digital assets whose disposal requires real consideration, such as email accounts SNS sites and music. (See also Walter et. al 2011).
11) INTRODUCE A SKYPE VISITING SERVICE
This could be delivered by trained volunteers to offer social support to isolated patients on a regular basis, perhaps between face-to-face visits. Similarly, Skype follow-up clinics for nurse and doctors following initial assessments could be a more effective and appropriate way to review stable patients, rather than a telephone call.
This is intended as a policy document with respect to the rapid adoption of new media in order to increase the welfare of patients, carers and staff in the Hospice and provoke new thinking about the nature of confidentiality. The context is a much longer term study that we will report on at a later date. This will help demonstrate the foundational place of communications for end-of-life patients in a situation where many staff have noted that isolation and loneliness are paramount issues and where any means that can facilitate connectedness are central to patient welfare and self-esteem.
While the longer term study is more concerned with communication between patients carers and their entire social universe, this report has focused on communication between the Hospice and other professional care staff both with patients and carers but also with each other. Perhaps it is the presence of an anthropologist, but a primary conclusion has been that the problems in adopting new media have proved to be largely cultural rather than financial or technical. In particular we have highlighted the way in which the issue of confidentiality, which was originally a concern for patients’ privacy, has become a barrier to sharing relevant information that in-and-of itself significantly increases suffering, disempowerment and failures of care for patients.
By contrast we have argued that the adoption of new media can be a means of improving the relationship between patients and professional care workers creating openness, collusion and equality and giving an element of choice and preference to patients with no loss to staff. Staff also can gain from these more efficient media saving both time and costs. And there are clear benefits in assessment such as through Skyping and in eLearning using YouTube.
For these reasons we recommend that Hospices develop pilot schemes around the suggestions made in Part Two and use their relative autonomy to help encourage better communication throughout the health services in the interests of patient’s welfare.
Caldicott Committee (1977) Report on the Review of Patient-Identifiable Information HYPERLINEhttp://static.oxfordradcliffe.net/confidential/gems/caldrep.pdf
CDAS – The Centre for Death and Society at the University of Bath HYPERLINK "http://www.bath.ac.uk/cdas/" http://www.bath.ac.uk/cdas/ ) recently held two conferences on digital death concerned with pre-death and post-death respectively ( HYPERLINK "http://www.bath.ac.uk/cdas/news/archive/conference/index.html" http://www.bath.ac.uk/cdas/news/archive/conference/index.html)
Charness, N, Demiris,G, Krupinski, E. 2011 Designing Telehealth for an Aging Population: A Human Factors Perspective. Taylor and Francis
Demiris,G. Parker Oliver, D. and Wittenberg-Lyles, E 2011 Technologies To Support End-Of-Life Care Seminars in Oncology NursingVol 27, No 3: 211-217
Department of Health July 2012 First national VOICES survey of bereaved people: key findings report.
Dept. of Health (2003) Confidentiality NHS Code of PracticeHYPERLINEhttp://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4069254.pdf
Gurstein, M Ed. 2012 Journal of Community Informatics Vol 8, No 1 Special Issue: Community Informatics and Older Persons.
Hall, S. Campbell, C. Kiehlamn, P. Murchie, P and S. Murray 2011 Introducing an electronic palliative care summary: patient, carer and professional perspectivesBMJ Support Palliat Care 2011; 1(A11).
Leadbeater, C. and Garber, J. 2010 Dying For Change. London: DEMOS
Lynch, M. 2011 Primary palliative care in Ireland; identifying improvements in primary care to support the care of those in their last year of life. The Irish Hospice Foundation with The Irish College of General Practitioners and The Health Service Executive
Madianou, M, and Miller, D. 2012 Migration and New Media: Polymedia and transnational families. London: Routledge
Miller, D. 2011 Tales from Facebook. Cambridge: Polity
Miller, D. and Sinanan, J. (In Press) Webcam. Cambridge: Polity.
National Council for Palliative Care 2012 National Survey of Patient Activity Data for Specialist Palliative Care Services MDS Full Report for the year 2010-2011 http://www.ncpc.org.uk/sites/default/files/MDS%20Report%201011%20A4_1.pdf
NHS National End of Life Care Programme 2012.EPaCCSMaking the Case for Change. HYPERLINK http://www.endoflifecareforadults.nhs.uk/publications/epaccs-making-the-case-for-change
NHS Scotland 2011 Living and Dying Well: Electronic Palliative Care Summary. 2011 http://www.scotland.gov.uk/Topics/Health/NHS-Scotland/LivingandDyingWell/ePCS
Sofka, C. Cupit, I and K. Gilbert (Eds.).2012 Dying, Death and Grief in an Online Universe. New York, NY: Springer
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For a summary of most relevant literature on palliative care generally, see http://www.endoflifecare-intelligence.org.uk/resources/research.aspx#journals
I would very much like to acknowledge and give thanks to all the time and effort that people have put into helping me create this document. This includes all those Hospice patients who, despite their circumstances, were prepared to help an anthropologist in this research. Also the many staff from several Hospices who agreed to be interviewed. This applied document forms part of a larger collaboration with the Hospice, which is being carried out along with the Director of Supportive Care at the Hospice who was my colleague throughout, accompanying me on all the visits to patients, and discussing the issues throughout. I couldn’t possibly have done this work without her. Nor without the support of the Director of the Hospice, who first suggested that I come and work with them and from the start, right through to the writing of this document, has been a constant support and advisor. Thanks for comments on a draft of this document to Charles Crook. Thanks also to Angela McCormack, Tom McDonald, Sheba Mohammid, Rosica Pachilova, and Tony Walter.
SUMMARY OF RECOMMENDED INITIATIVES
We suggest an immediate employment of all new media technologies where appropriate, but also would encourage pilot schemes based on the following:
1) Permitting IT use.
This is simply issuing a formal notice to all staff that the usage of all new media is permitted and encouraged, except where there is a written advice of prohibition suggesting limits to that usage.
2)The New Media Ideas Website.
We propose to establish a website where staff who observe creative adoptions of new media by patients can report these observations and in turn suggest such media solutions posted by other staff to their own patients.
3) The IT Friends Scheme
We propose that a cohort of IT volunteers be established who can help both patients, carers and staff with their IT problems and help teach new skills such as the use of Skype.
4)The Notes For Home Visits
We propose continued experimenting with new devices for accessing patients notes, recording new information from visits and jointly looking up information with patients. Using familiar devices known to patients rather than bespoke and expensive alternatives
5) The Principle of Patient Choice
We suggest that patients be asked about their media preferences at the initial meeting with staff, that this be recorded and periodically updated. Patients can also be encouraged to use texting to inform staff as to their immediate preferences for media usage.
6) The Charter for Appropriate Usage.
The proliferation of new media could leave professional staff open to the abuse of these devices e.g. by patient’s relatives. We suggest patients and carer are given a simple charter that makes clear that staff are free to disengage from any media which they feel is being inappropriately used by others.
7) Proactive encouragement of social relationships.
While we do not want to impose new media on the unwilling, staff are more aware of the likely consequences of illness on the reduction of social support. They may therefore use new media to be proactive in helping facilitate patients and carers social communication before illness makes this more difficult
8) Recommending Internet Sites
Given that ‘Googling’ fails to differentiate between scientifically based and commercially based medical advice, we suggest the Hospice makes recommendation to patients with regard to internet sites of potential value
9) Digital Legacy Apps.
We suggest that patients be informed about the potential for considering the fate of their online presence and also the potential for leaving audio, visual and other materials to those who survive them.
10) Investigating the potential for eListening
We wish to investigate further the potential for both anonymised and personal communication to Hospice staff by patients, carers and relatives.
11) SKYPE visiting service
We suggest that Skype could be used proactively by trained volunteers to offer social support to isolated patients, in addition to home visits.