Images of the Hospice
Images of the Hospice
Abstract and Keywords
This chapter looks ‘outside’ the Hospice at issues of the organization’s image. The authors talked to staff, volunteers, and members of the general public, as well as to a number of key stakeholders in the local healthcare community, in order to gauge their views on the host organization. The analysis examines the problems associated with the image of hospices and discusses attempts of staff and volunteers to ‘dispel the myths’ about the nature of hospice care work—a form of labour which potentially runs the risk of being characterized as ‘dirty work’. The chapter then examines how the Hospice is seen in the eyes of other healthcare professionals and discusses the choice of palliative medicine as a career for junior medics. Finally it discusses a degree of ‘confusion’ that staff and volunteers claim exists in the minds of GPs and consultants in specialist cancer hospitals about the role of hospices.
This chapter looks essentially ‘outside’ the Hospice at issues of the organization’s image. In so doing, we talked at length to staff, volunteers, and members of the general public, as well as to a number of key stakeholders in the local healthcare community, in order to gauge their views on the host organization. The analysis examines the perceived problems associated with the image of hospices and discusses the attempts of staff and volunteers to ‘dispel the myths’ about the nature of hospice care work—a form of labour which potentially runs the risk of being characterized (or even stigmatized) as ‘dirty work’ (Anderson, 2000; Ashforth and Kreiner, 1999; Bolton, 2005; Simpson, Slutskaya, Lewis, and Hopfl, 2012). We then proceed to examine how the Hospice is seen in the eyes of other healthcare professionals and in the process discuss the choice of palliative medicine as a career option for junior medics. Finally we discuss a degree of ‘confusion’ that staff and volunteers claim exists in the minds of GPs and consultants in specialist cancer hospitals about the role of hospices—something that, in their eyes, can result in patients being referred to the Hospice ‘too late’ for the referral to have any meaningful benefit.
The General Public’s Image of the Hospice
In 2006, Help the Hospices, the national charity established to advocate for independent hospices across the UK, commissioned Ipsos MORI to carry out a national survey on the public’s perceptions and understanding of the work of the hospices. The survey demonstrated that the majority of the general public were aware that hospices are involved in the care of the dying and viewed hospices in a positive light: hospices were generally regarded as compassionate, (p.170) supportive, and professional organizations. However, there was also a degree of uncertainty about a number of aspects of hospice work.
In terms of public awareness, around seven in ten adults made reference to the nature of hospice care in terms of caring for those with life-limiting conditions. Almost a third of the population had heard of hospice care because a friend or relative had used a hospice service; 16 per cent had heard of hospice care from the national media; and 11 per cent had read about it in a local newspaper. However, unsurprisingly perhaps, over 60 per cent of those surveyed had little or no idea what the term ‘palliative care’ meant. Two-thirds of the people surveyed thought that hospices cared for people in a building where they stayed for a number of days. Far fewer, however, knew about day care services or that hospices were involved in the support of people in their own homes. Hospices were viewed with a great deal of sympathy and over three quarters of those surveyed felt that they would be confident in the care delivered by a hospice. Almost nine in ten of those surveyed believed that everyone with a terminal illness should have the right to receive hospice care. With regard to funding, more than three-quarters responding to the survey believed that the government should contribute 50 per cent or more towards the cost of hospice care. Over one-third felt that hospices should be fully funded by the government; almost a third had given money to their local hospice; and over half had donated items to a charity shop in the last two years.
There is however a substantial body of evidence (see e.g. Aries, 1974; Howarth, 2007; Kellehear, 2007, 2014) that demonstrates a widespread lack of public knowledge and understanding when it comes to issues of death and dying, with the consequence that death has arguably become somewhat stigmatized or ‘othered’ in modern society. As life expectancy increases, for many communities there is less familiarity with death and many are not exposed to the death of a relative until they themselves are well into middle age. Indeed many people are in their fifties when they see a dead body for the first time. The fracturing of familial ties in some communities, notably by the greater mobility of family members, can lead to a diminution of the extended family, with many elderly people now cared for within institutions such as care homes (see Hyde, Burns, Hassard, and Killett, 2014). As Kellehear (2007, p.204) states: ‘Long life expectancy is becoming a mixed blessing for the wealthy industrialised nations of the Cosmopolitan period.’ At the end of their lives many find themselves admitted, often inappropriately, into the acute setting of a local hospital because of a fear of death on the part of carers and a lack of knowledge as to how to care for the dying. Death itself, which once was a family affair, has now become remote and institutionalized: the domain of the professional. The dilemma for the modern age is that whilst death is a familiar and recurring theme in the media—often sensationalized or (p.171) sanitized on television and film—it has become, in reality, a taboo subject for most in society. In order to address some of these issues, the Department of Health set out the goal of increasing public awareness concerning issues of death and dying in its End of Life Care Strategy published in 2008. The achievement of this goal is seen as a key factor in improving end of life care and the strategy instructs local NHS organizations and local authorities to:
Consider how best to engage with their local communities to raise the profile of end of life care. This may involve engagement with schools, faith groups, funeral directors, care homes, hospices, independent and voluntary sector providers and employers amongst others.
(Department of Health, 2008, p.11)
As a response to this strategy, in 2009 the Dying Matters Coalition was formed with membership from the NHS, the independent sector, and voluntary organizations, including hospices, with the goal of promoting public awareness of dying, death, and bereavement and encouraging more members of the public to begin open conversations about this difficult subject. Each year the Coalition holds a Dying Matters week. In 2016 this was held in May with the strapline: ‘The Big Conversation—Talking about dying won’t make it happen.’ Additionally, in 2015 a group called the National Partnership for Palliative and End of Life Care, which consisted of representative organizations from across the statutory and charitable sectors, produced a report with the title ‘Ambitions for Palliative and End of Life Care’. In this they argued that despite real progress (and the growing reach of the Dying Matters Coalition) there remained a continued need to address and dissolve the taboo that many people feel when it comes to talking about dying, death, and bereavement, and indeed in facing up to their own mortality and that of people important to them.
Although hospices are seen by government as having a key role in the attainment of this goal, the delivery can be quite problematical. In particular, how can one engage with people on the subject that they often fear the most? The Hospice staff recognize the importance of engaging with the general public on issues of death and dying; after all, we are all going to die some time and to acknowledge this fact and even open up conversations with relatives about one’s own wishes at the end of life is seen as healthy. Such discussions also have the propensity to increase the profile of the Hospice itself. It is interesting to note, however, that many of the staff within the Hospice with whom we raised this subject have yet to enter into a conversation with their own relatives about their wishes at the end of life.
Engagement with the wider population about the role of the Hospice has been attempted through a variety of means. In the past the Hospice has ‘opened its doors’ to the general public under the guise of ‘Summer Fetes’ in the grounds or ‘Flower Festivals’ within the Hospice, normally on special (p.172) anniversary years, with floral displays spread throughout the building so that visitors are tempted to venture inside. Other hospices have simply held ‘Open Days’ publicized in the local press (the Department of Health has also suggested similar open days at funeral directors and crematoria, much to the amusement of some of the Hospice staff interviewed). Indeed the local hospital has in recent years had open days at its mortuary in an attempt to allay fears and dispel myths. Needless to say, the offer to take a guided tour of the local hospice has seemingly not been top of the list as a weekend activity for many in the local community and attendance has often been quite low. Indeed, Susan, a member of the administrative staff, was somewhat suspicious of the motives of some who might be tempted to attend such ‘Open Days’ when she suggested: ‘There is a fine line between wanting to have a look around your local hospice and morbid curiosity.’ This apparent lack of interest has in the past caused disappointment amongst some Hospice staff who suggested they were keen to encourage people reluctant to step over the threshold to experience something of ‘that special feeling’ of a hospice.
Of course, members of the public who are fearful of their local hospice may eventually become patients or may have to visit a relative being cared for in the hospice. When they come for the first time they are often apprehensive. As Lucy, a senior Ward nurse, said (with no pun intended we assume): ‘They are actually frightened to death of coming through the front door.’ No doubt much of this trepidation is related to perceptions of what might be found inside. As Susan suggested in a previous chapter, perhaps they think ‘there would be bodies stacked up against the back door’. Susan also referred to the seemingly intractable link between the Hospice and its association with death when she said that, on more than one occasion, members of the public had said to her: ‘When my [father/mother] came into the Hospice they went downhill fast’, suggesting not only that the public find it difficult to think of the Hospice without thinking of death and dying, but also that some actually feel the Hospice may be in some way responsible for hastening the death of their relative. Whilst many of the staff were sceptical about the role of ‘Open Days’ in attracting members of the general public to the Hospice, Zara, a senior nurse in Day Hospice, did feel that such events could have their place in educating fellow professionals about the range of services offered by the Hospice, as she had often been surprised at the lack of knowledge, even amongst quite senior healthcare professionals, about the diversity of hospice services available.
The Hospice has also, in the past, coordinated a number of campaigns in the local press that sought to ‘dispel the myths’ about what hospices were really about. Often these articles have headlines such as, ‘What is a Hospice?’ or ‘The Hospice—not what you think’. Such articles are often devoted to explaining that hospices are not simply places where people go to die; that the majority of (p.173) patients are never actually admitted into the Hospice at all, but are cared for at home; that many patients do actually go home from the inpatient unit; that there is a lot of laughter in the Hospice (which is a difficult proposition for many people to accept); and that the Hospice building is bright, spacious, and modern rather than a gloomy, morbid, and fearful place.
However, many staff are less than enthusiastic about such newspaper campaigns. Whilst those staff responsible for publicizing the Hospice are always keen to do so—often with a human interest story regarding a patient or their relatives—no doubt they would be disheartened with the view of Lesley, a Community Nurse Specialist, who suggested that the local readers would only be interested in the article if it involved someone ‘in the public eye’. She suggested, ‘Only those who are interested [in hospices] will read the articles. If I didn’t work for a hospice, I couldn’t turn the page over quick enough—unless it’s some celebrity with cancer.’ Such articles might therefore be seen as ‘preaching to the converted’ as they may well only be of interest to those with a particular reason to read them. As such, the efficacy of such campaigns in raising awareness of what the Hospice actually does and what it is like may be questionable. Arnold, a long-standing volunteer, in line with many we spoke to, suggested that effectively publicizing the Hospice ‘can only be done by word of mouth. It won’t happen with advertising campaigns.’ Indeed one of the dilemmas regarding the publication of such articles is that, whilst the statistical evidence suggests that over the last decade between 40 and 50 per cent of patients who are admitted for hospice inpatient care actually go home, the frequent reproduction of this fact in Hospice publicity material, to some extent, negates the fact that hospices have become so well supported within their local communities, primarily because they have developed a specialist expertise in dealing with death and dying.
The message therefore is arguably somewhat confused and self-denying in that it attempts to portray a sanitized image that is seen as being more palatable to the general public. It has been suggested that such ‘projected identity’ is one which emanates from the organization in a more or less controlled way to produce an image that is more positive and unified (Soenen and Moingeon, 2002; Bayle-Cordier, Mirvis, and Moingeon, 2015). Liz, a Ward Nurse, recognized the fundamental problem with portraying a less sanitized (and arguably more accurate) version of the Hospice image when she suggested: ‘I think it is difficult because you are facing up to your own mortality; it is a real difficult message to get across.’ This concern about the image of the Hospice and its association with death and dying was highlighted in a conversation with Hospice doctor Megan about expanding the range of services offered by hospices. She suggested that if funding was available, hospices might offer a service to pre-palliative patients (those still in the (p.174) curative phase of their illness) to provide practical advice and support that would improve their quality of life. However, she was quick to suggest that such a facility would need to be provided away from the hospice building and with a ‘name that suggested life rather than death’. There then followed a number of rather bucolic suggestions for the naming of such a facility. She suggested that ‘[recently diagnosed patients] would run a million miles from a place called a “hospice” at their stage in their illness, but they may go to some centre with an uplifting name—the “Woodland Centre” or the “Living Centre” or some such’. Indeed such ‘centres’ do exist at a number of hospices to offer specialist therapeutic services outside of the hospice brand and shortly after our fieldwork was completed the case study Hospice began to prepare a bid for funding such a centre, one that would ostensibly serve to replace the Day Hospice—a service that would have a rehabilitative approach, with no nurses, and cater for people prior to a palliative diagnosis and for patients with long-term conditions other than cancer.
This desire on the part of the organization’s members to see the Hospice as something that it is not, or for the organization to expand its mission to include the care of patients other than those who are no longer curable or actively dying, has resonance with the concept of identity dissonance (Elsbach and Kramer, 1996; Jeyavelu, 2009) in which a state of uncertainty exists regarding definitions of ‘self’. The suggestion is that such dissonance is potentially damaging to the organization and its members as issues of identity tap into deeply held cultural values and assumptions with the propensity to destabilize the organization. Megan’s attempts to widen the scope of the Hospice from solely the care of the dying have the propensity to act both positively and negatively on its image. On the one hand, the Hospice could be seen as more inclusive, with the potential that it would build up a bigger supporter base as it encouraged more patients to use its services. On the other hand, it could be diluting its key mission of caring for the dying. Such strategic changes and their impact on the Hospice image were the subject of a conversation we had with Jim, a Trustee, who was concerned that as the Hospice strived to open its doors to patients with conditions other than cancer, this would indeed in some way dilute the Hospice image, as it was the emotive nature of cancer as a disease that had been a key factor in the continued support by the general public. He feared that any such move to widen Hospice care would reduce the impact of the ‘brand’.
It was clear that the Hospice has had to struggle with issues of image for many years, so much so that it has now produced a short leaflet setting out eight common myths about hospices, each of which is followed by a brief explanation that seeks to correct these misconceptions of hospice care. The full content of this leaflet is provided at Appendix 2. The myths addressed are as follows: (p.175)
1. Hospices are places that people just go to die
2. Hospices only treat people with cancer
3. Hospices are depressing places to visit
4. Care is only delivered in a building called a hospice
5. Hospices only care for people who are in the last few days of life
6. Hospice care is just about ‘tea and sympathy’
7. Hospices only look after elderly people
8. Hospices are part of the NHS.
A conversation we had with Mina, a nurse working with patients in their own homes, demonstrated another aspect of the uphill struggle that hospices face in defining their image. We were discussing the fact that the members of the Hospice Community Team, although consisting of highly qualified, specialist nurses, do not wear a uniform. On the whole Mina felt that this was a positive thing as, in her opinion, it did not detract from the specialist nature of her role and it portrayed ‘a more human image’. However, she said that a consequence of this lack of uniform has been that patients have been known to say to her, ‘Oh, you know a lot for a volunteer, don’t you?’ She continued, ‘That’s the other thing I think about hospices. I think people are surprised when you tell them how many people are actually employed here. The general public often associate hospices with volunteers.’
A further issue regarding hospice identity, and something we touched on earlier, was raised by Brenda in connection with the Hospice Community Nurse Specialist Team; that is, what she saw as the widespread misconception (both by the general public and by other non-Hospice clinical colleagues) that Community Nurse Specialists are employed by the national charity, Macmillan Cancer Support. The name ‘Macmillan’ has become so synonymous with the role of the specialist cancer nurse visiting patients in their own homes that the nurses themselves often refer to ‘Macmillan’ as a generic term to describe their role to prospective patients. We heard them say to patients on the telephone: ‘We are like Macmillan Nurses’, only then to follow this up with ‘but we are actually employed by the Hospice.’ Even other members of the Hospice staff have been heard to refer to the Hospice Community Nursing Team as ‘the Macmillan team’. It is therefore easy to understand why this confusion exists if some of the Hospice staff themselves were heard to use the word ‘Macmillan’ as a generic term for the Community Nurse specialists. Arguably this confusion can only act to the detriment of the Hospice, a situation that is evident when, from time to time, cheques are received for example in memory of a relative which record the payee as ‘Macmillan Nurses’, even though the care had been delivered by the Hospice Team.
We discussed the relative strength of the Macmillan ‘brand’ with Maggie, a Hospice Community Nurse who had previously worked as a ‘real’ Macmillan (p.176) nurse in a nearby city. We asked whether she felt that the word ‘Macmillan’ had a stronger brand identity than the term ‘Hospice’. She replied, ‘I don’t know about here but I would say in [the city] it definitely was.’ When we asked her why she felt that there was a difference between the relative strength of these two brands in the local town and the city, she suggested that those hospices which are located in cities struggle to create a local identity as they are competing with hundreds of other city-based charities for funds and recognition. She continued, ‘[Hospices within cities] are not part of the community like we are here.’ This suggests that a key element in the success of the Hospice can be found in its strong links with its local community.
So how then should the Hospice raise awareness in order to correct some of these apparent misconceptions? There is obviously a degree of proselytizing involved—with many staff (and particularly those involved in fundraising) needing constantly to spread the word about the work of the Hospice. Local community groups often contact the Hospice to request the attendance of someone at one of their meetings to talk about the organization and its work. Wherever possible, such groups are encouraged to hold their meeting at the Hospice as it is felt that the opportunity to see the site at first hand is a much more effective way of raising awareness and generating support. The Hospice has its own short DVD which includes interviews with staff, volunteers, patients, and their families. Recently some hospices have now produced short web-based ‘virtual tours’ of their hospice building similar to those that are produced by estate agents. One of the seeming benefits is that patients who are to be admitted can at least have some of their worries dispelled before they arrive.
There is also a programme of fundraising events and initiatives throughout the year which not only raise money but are also seen as a way of raising awareness for the organization. Many of the Hospice staff feel that the most effective way to get the message across is to ‘start young’—seeing a key role for the Hospice in engaging with schoolchildren at primary and secondary level. This is sometimes achieved informally by staff talking to local school groups about the work of the Hospice or by encouraging pupils to come to the Hospice to meet the patients and to find out more about the organization. Zara, the Day Hospice nurse, felt that this latter option was likely to have the greatest impact. These visits are arranged in Day Hospice where, apparently in most cases, the patients are pleased to see the children and to engage with them. During the period of this study, pupils from a number of local schools came to the Hospice—some to sing or read poetry to patients and others to join in the creative activities in Day Hospice. Some schools really engage with this process, bringing pupils over a number of weeks to meet and talk to the patients in Day Hospice. On one occasion we saw young pupils sitting with (p.177) patients, listening to their reminiscences as part of their social history projects. Of course this type of activity will only ever ‘scratch the surface’ in terms of the number of young people involved, but many of the staff felt that this was at least a start. Part of the rationale for this involvement with young people was that such visits will remain in the consciousness of the children and, provided their experience has been a positive one, may result in them becoming unwitting ambassadors (or even volunteers) for the Hospice, should the subject of hospice care arise in conversation in the future.
When community groups come to the Hospice it is clear that many are under a misconception, not only about what the building would look like and what goes on inside, but also about how the Hospice is funded. The majority of people recognize the fact that the Hospice is a charity; indeed many visitors have supported the Hospice by giving donations over the years. When visitors are informed by staff that around a third of Hospice funding comes from the NHS, their views apparently echo the national survey highlighted above and they often express surprise that this proportion is not higher. Marilyn, a Hospice volunteer, felt that this lack of knowledge could significantly impact on the ability of the Hospice to raise funds from charitable sources. She commented:
I think though a lot of people just assume that the Hospice is funded by the NHS and so they tend to think, ‘Why should we be giving money [to the Hospice] when they are getting it from the Government?’ [Some people] think that the Hospice is just another hospital in a sense; another branch of the NHS.
She went on to suggest that it is only when someone has had a family member admitted that they begin to see the Hospice as something distinct from the NHS. When talking to the general public, Hospice staff suggested they receive comments such as ‘the Hospice should be fully funded by the state’. However, when we put this suggestion to Edward, a senior Hospice Manager, he reacted, ‘We wouldn’t want 100% NHS funding as this would take away…our independence.’ Being independent allows the Hospice to offer services that the NHS may not see as a priority for funding, such as complementary therapies, psychological support, and bereavement care. It also enables the Hospice to have a much higher nurse to patient ratio than would be countenanced within the NHS. Whilst the NHS is the largest single financial contributor to the organization, Edward was keen to stress that the majority of funds the Hospice receives come from the general public and organizations across the local community. If the Hospice was subsumed within the NHS, Edward suggested that specialist palliative care might be restricted to basic inpatient care, possibly in a hospital setting, with the result that ‘the support of the general public would evaporate’ and the ‘Hospice identity…built up over the last thirty years would be lost’.
As part of their induction programme, we spoke to Emily and Kaira, two doctors who had recently chosen specialist palliative medicine as their career path and were working for a number of months at the Hospice as part of their rotational training programme. We were taken by what seemed a sense of negativity shown to Emily and Kaira by some medical colleagues within the NHS when they discussed their career plans. Emily suggested:
Things are getting better. There is greater awareness of palliative medicine as a specialty in its own right, but you still get some very negative reactions. I told one consultant only recently that my chosen career path was palliative medicine and his reaction was ‘Oh no! What a waste!’ I was so shocked and annoyed that he could think that way.
It was clear that Kaira had similar experiences. She noted, ‘I have stopped telling people [other medical professionals] that I have decided to go for a career in the Hospice rather than General Practice. The reaction is so negative especially amongst the older hospital consultants.’ One senior nurse was even more forthright when she said, ‘I think a lot of NHS staff think that we just kill patients off; pump them full of morphine and sedatives and…that’s it!’ Megan, a Hospice doctor, also held similar disparaging views on how the wider medical community viewed hospices:
They see hospices as very sad and depressing places. The other thing is it’s not seen as a very intellectually rigorous speciality—they don’t think there’s much science to it. I think other doctors think that we would just literally hold the patient’s hand and turn our head to the side and ‘comfort them’ and don’t realize that there’s quite a lot of in-depth pharmacology and physiology that we need to understand in order to use the drugs that we do in the combinations that we do. I don’t think that they realize there is a scientific basis to what we do and that there is an evidence base behind what we do. I think they think that we just ‘dabble’ and come up with some kind of random concoction.
We suggested to Megan that this somewhat condescending view of hospices as organizations offering comfort and compassion to the dying, but with little medical rigour, is based on a historical perception of the early hospices and could be described (rehearsing an earlier discussion) as the ‘Mother Teresa syndrome’: in other words a feeling from within the medical establishment that their hospice colleagues had followed a career in palliative medicine because of some form of altruistic ‘calling’. Megan responded:
There is an element of that because a lot of hospices have Christian backgrounds. There is a group of doctors who have strong religious beliefs; who have gone into palliative medicine and almost combined their career with their religious conviction (p.179) and that is something that I am not necessarily comfortable with…I don’t think that this is very helpful because I don’t see how you can be open-minded and impartial and non-judgemental if you have such strong convictions. It’s OK to have beliefs but I don’t think you should combine them with your professional role.
Trainee Hospice doctor, Kaira, highlighted a similar lack of interest in mainstream medicine towards hospices when she suggested: ‘I think the vast majority of NHS professionals have never set foot in a hospice and have no understanding of what [palliative care] might mean. [Some medical] students would complete their courses without ever setting foot in a hospice.’ Alice, a Ward nurse, suggested that whilst the nurses at the local specialist cancer hospital (where she had previously worked) understood hospices and palliative care in general, the situation was different in the local NHS general hospital. In her view, nurses working there were often ambivalent, and sometimes even hostile to the work of hospices, seeing them as ‘holding areas’ where ‘no real treatment’ was delivered. She said that some of the nurses she had worked with felt that: ‘Hospices were not really seen as part of the local healthcare set-up’ but instead just offered ‘minimal levels of care but getting all the praise for their “wonderful” work’ for ‘in “a real crisis” the patient would finish up being transferred from the Hospice to the hospital for emergency care’.
Hospice doctor Megan also pointed to the fact that, not only is there an ambivalence in the minds of some GPs towards the Hospice, there is also a degree of fear about the type and quantities of drugs that the Hospice uses, which often go far beyond the levels that GPs would feel comfortable prescribing. In her view, as noted previously, some healthcare professionals held the view that the Hospice simply ‘pumped the patient full of drugs’ in order to induce a comatose state or, indeed, to control or hasten the time of death. Another doctor suggested similarly (as noted in chapter 4) that such perceptions have been exacerbated following the issues that came to light in the case of Dr Harold Shipman, who was found to have killed his patients through the administration of ‘grossly excessive’ doses of morphine. Following the Shipman Inquiry many GPs became reticent about the use of high dosages of morphine to counter severe pain, something that the Hospice doctors prescribe regularly. Megan suggested however that for over five decades, starting with the work of Cicely Saunders, hospices have developed methodologies that enable their medical staff to administer drugs in a controlled manner, which often enables the patient to regain a quality of life that is relatively pain-free. Some GPs however remain apprehensive about referring their patients to the Hospice because of the drug regimes operated, which include so-called ‘unlicensed’ drugs only available to doctors working in certain specialist settings such as the Hospice.
(p.180) How then should these issues be addressed? Hospice doctor Megan felt that the approach should be similar to that adopted by her colleagues in the fundraising department, in that a degree of ‘PR’ was required:
I think you need…passionate [hospice] consultants going into hospitals, meeting consultants and talking to GPs—getting themselves out and about, presenting at meetings and talking about what we do. I have seen some consultants in palliative medicine do that very well and become very well-known and an integral part of the working of that hospital…and that can really change everyone’s perception. It’s ‘PR’ actually.
Lesley, a Community Nurse Specialist who previously had worked with medical consultants at a world-renowned cancer hospital, suggested that even her fellow medical professionals in such a specialist hospital were often reticent to refer their patients to the Hospice, as they equated the inability to cure the patient with personal failure. Lesley said that rather than refer them they would discharge them from their care, this often resulting in the patient feeling ‘abandoned’ by the specialist in whom they had placed trust. She continued: ‘Maybe that’s a common theme—that they’ve not been able to cure or put someone into remission. And they [the patients] are completely discharged then from their umbrella and the patients do feel that…it’s like, “Oh, we’ve just been dumped.”’ Molly, another senior nurse, had similar experiences in a general hospital in which she had worked, although in this example it was at a much earlier stage in the patient’s illness:
An example that I remember very strongly was a consultant that I worked with who was a surgeon. When he was carrying out surgery to fix things he was fantastic but if he found something like cancer, he wouldn’t even see to that patient after that. He would walk past the bottom of the bed. He wouldn’t even say, ‘Good morning.’ The patient was seen as a failure. He was going to die. In his eyes he couldn’t do any more for that patient. So he would walk away.
Lesley, talking about her experiences of engaging with consultants in the specialist cancer hospital where she had worked, was also somewhat pessimistic about getting them to acknowledge that hospices could contribute towards their patients’ care:
They are very compartmentalized—oncologists and radiotherapists. This is their thing and they know it incredibly well but they don’t understand palliative care. Because there are two hundred types of cancer and so many different types of treatment but getting them to admit the value of palliative care would be impossible.
Lesley admitted that the image of hospices, in the eyes of professionals within the acute (hospital) sector, and in the case of some GPs, is complex and ambiguous. She suggested that a common view was of hospices being seen (p.181) as solely offering care to the imminently dying. This often results in patients being referred to the Hospice ‘too late’, sometimes within days of their death, by which time there is a limited amount that the Hospice can do for them. Lesley commented that, in most cases, the doctors caring for such patients ‘have an inclination, many months previously, that the disease is irreversible’ and that curative treatment is no longer appropriate, but that they often ‘continue with such treatment, unable to admit to the patient that life expectancy is very limited’.
In order to go some way towards counteracting this reluctance, trainee doctors are now encouraged to ask themselves the so-called ‘surprise question’—‘Would I be surprised if this patient died within the next twelve months?’ If the answer to this rhetorical question is ‘No’, then the doctor should begin considering palliative care, including referral to a hospice if the patient’s symptoms are complex. Megan, the Hospice doctor, said that when patients are referred earlier in their disease trajectory, the Hospice can invariably improve their quality of life. Advice and therapeutic support are then available in the earlier stages of their illness, often without the patient having to visit the Hospice. Should the patient’s condition deteriorate, they might be admitted into the Hospice where a drug regime can be prescribed to enable symptoms to be effectively controlled. Once their symptoms have stabilized, they are often discharged from hospice care with the option of referral back again as their disease progresses and their symptoms become, once again, more complex. The concept of discharging a patient from hospice care caused a degree of surprise to one of Megan’s medical colleagues:
Even amongst doctors, [the Hospice] is thought of just as a speciality which looks after people who are actually in the process of dying. A lot of people don’t realize that we look after patients sometimes even for years. I had someone laugh at me just a couple of weeks ago when I talked about discharging a patient…a senior surgical doctor. And he thought it was really funny that I was talking about discharge.… He was saying, ‘Oh, that’s crazy! You don’t do that.’ And that is the general perception, even amongst quite a lot of senior doctors, that we just deal with the dying process.
This highlights one of the fundamental issues regarding the role of hospices in the eyes of other medical professionals. Whilst the Hospice promotes itself as being a specialist service offering ‘end of life care’, the staff often express consternation when a patient is referred into the Hospice when they are considered to be ‘too close to death’. The message that this sends out is somewhat confused, resulting in some GPs and other healthcare professionals expressing exasperation at the fact that their patient is refused admission.
A similar confusion exists over what constitutes ‘specialist palliative needs’. If, on reviewing the referral documentation, the Hospice staff determine that (p.182) the patient does not have ‘specialist’ needs then they will not be accepted for hospice care and are referred back to the consultant, GP, or district nurse. The clinical staff argue that the Hospice is a small ‘specialist unit’ with limited resources and must therefore have admission criteria that ensure only those with ‘specialist’ needs receive the support of the Hospice. The assessment as to whether a dying patient has ‘specialist’ needs is complex, with the result that the admission criteria are sometimes seen as being overly restrictive by professionals outside the Hospice. We were told that one or two GPs have, in the past, expressed frustration at what they saw as the unnecessarily restrictive admissions criteria, suggesting that the Hospice is in some way ‘elitist’ and only willing to accept those patients which it determined had particular specialist needs. This has led, on more than one occasion, to GPs feeling exasperated at not being able to get their patient admitted to the Hospice. Indeed, Brenda, a long-standing nurse, told of one of the rare occasions that the Hospice received a degree of bad publicity when, many years earlier, a GP took his frustrations to the local newspaper, which ran a headline that read: ‘What do you have to do to get a patient into the Hospice?’ Despite the years that have passed, Brenda remembered this headline with some dismay and suggested:
I think that was at a time when we were looking at our resources to make sure that the service was equitable. You see, I think the pendulum has swung back and forth over the years. In the early days it was a case of ‘Bring us your sick’; it was literally a case of selling the Hospice to get yourself known; to get yourself trusted. Then we went through a period where we were probably too restrictive.
Lesley, the Community Nurse Specialist, suggested that she could understand why this confusion has caused some consternation with GPs in the past. She said the fact that the Hospice considers the patient’s symptoms to be insufficiently complex, or that they are not poorly enough, is a difficult concept for GPs or other professionals to understand. As she suggested, ‘They are not poorly enough for us; they are too poorly for the GPs.’ As Edward, a senior Hospice manager, noted similarly: ‘This confusion between what is “specialist” and what is “generalist” is a real problem for hospices. After all, if your mother or father is dying, it is hard to accept that they don’t have specialist needs.’
Reflections on Hospice Images
It is clear, then, that the image of hospices to the outside world is complex. There are those who see hospices as repositories of the sick and dying, and because of this are actually apprehensive of entering the organization. Indeed, we have noted how in Lawton’s (2000) ethnographic account of a hospice (p.183) inpatient unit, she refers to hospices as ‘silos’ of distress and dying whose main function is to shield society from what it fears most—the active process of dying. Many in the general public limit their view of hospices to patients in beds and are often unaware of the many other services the hospice has to offer often beyond its walls. Over the years the Hospice staff have applied various strategies to ‘dispel the myths’ about hospice care, but it is clear that many in the general public still do not want to engage with the subject as they often equate the word ‘hospice’ with the idea of death, and particularly death from cancer. In this respect, hospice work can be perceived as reflecting many of the concepts, meanings, and identities associated with socially tainted ‘dirty work’ occupations (Anderson, 2000; Bolton, 2005; Dick, 2005), an area of research that some feel has remained neglected in management and organization studies (Ashforth and Kreiner, 1999; Simpson, Slutskaya, Lewis, and Hopfl, 2012). It is claimed similarly that newspaper articles about hospices often remain unread and that invitations to visit the Hospice can go unanswered.
On the other hand, we were told that those who can bring themselves to attend can frequently be surprised by the Hospice’s ‘modern’ appearance and what is perceived as its calm and tranquil atmosphere. Such visits however can sometimes reflect a sanitized and strictly controlled version of the Hospice, with tours limited to Day Hospice (where patients are often less poorly), the therapy suites (where gentle music and the smell of essential oils promote a feeling of calm), the Hospice Chapel (for those who gain comfort from a spiritual place), and on summer days walks around the Hospice gardens (with its serene water feature and manicured flower beds). A visit to the Ward area is often a brisk walk along the corridor (‘so that we don’t disturb the patients’) and often the Ward is ‘out of bounds’ to visiting groups on the grounds of ‘patients being moved’ or ‘the nurses attending to their duties’: euphemisms usually for dealing with the deceased. The contradiction is of course that whilst talks and tours of the Hospice could be described as constituting a ‘denial of death’, it is the very fact that the Hospice deals with death—and death predominantly from cancer, a highly emotive subject—that has resulted in continuing public support over the decades. Often local people wish to donate to the Hospice but have no desire to be ‘educated’ about its work or to visit the Hospice itself.
This then is the challenge for the Hospice in terms of promulgating a positive image when much of its work is seen as inherently negative by the recipients of the message. Whilst the Hospice staff and volunteers go out of their way to evangelize about the positive aspects of hospice care—as summed up in the much-used phrase at the time of this study, ‘Hospices are about adding life to days when days cannot be added to life’—there remains an acceptance that this positive message of a life-enhancing service is lost in the powerful subliminal images of death, and particularly the painful and protracted death that often results from cancer in all its forms. From the (p.184) perspective of healthcare professionals, there is a wide spectrum of views about the Hospice. Some GPs have been very supportive of the Hospice from its early days and indeed it was a local GP who initially had the idea for a hospice in the town more than three decades ago. In those early years, it was also a group of GPs who gave medical support to the Hospice as part of their daily patient rounds without any request for payment. Nowadays many GPs, district nurses, and consultants apparently have a ‘high regard’ for the Hospice and work closely with the staff, actively referring their patients for specialist care. Indeed the Hospice has been instrumental in developing a range of initiatives with regard to end of life care, including the development of joint clinics with a number of specialties at the local hospital, offering outpatient clinics, accepting more patients with non-cancer diagnoses, and leading on the implementation of various NHS strategies for end of life care. Nevertheless, there are still medical professionals who feel that the Hospice is an ‘elitist’ organization adopting admissions criteria that are so restrictive that they have had difficulty getting their patients admitted.
So how does the Hospice culture influence the image that is portrayed to the outside world? Earlier we proposed that culture and identity are so intertwined that to attempt to separate them in an ethnographic account would result in an unnecessarily disjointed and diluted account of organizational life. In accord with Social Identity Theory, we suggested that at the heart of the concept of identity is the idea of ‘belonging’, or of ‘identification with’ the organization. This study has identified elements of ‘ambiguity and differentiation’ and, indeed discord and friction, regarding how the Hospice is perceived by both organizational members and outsiders.
Yet despite these ambiguities we found a common orientation running through the majority of our conversations with staff and volunteers alike. This would suggest that there is a strong ‘identification with’ the Hospice and its values, despite the rapidly changing healthcare landscape and the inextricable moves towards greater medicalization. The strength and breadth of this identification with the Hospice mission and cause may well be connected with the altruistic nature of the Hospice and a genuine desire to care for the dying. Notwithstanding the undoubted shift towards a more utilitarian and specialized posture, many still spoke of a ‘loyalty’ towards the organization or felt that they had a ‘duty’ to uphold the values of the past.
Whilst we would therefore propose a view of organizational culture as predominantly a unifying force, we would also leave room for elements of ambiguity and differentiation. Such ambiguity will inevitably impact on the image of the organization. To some extent this was clear in the study in relation to the Hospice being seen as somewhere ‘special’ or else as a provider of ‘specialist (clinical) services’. From the perspective of those attempting to ‘market’ the organization to its potential supporters, the Hospice is portrayed (p.185) in emotive terms as a ‘special’ place filled with ‘special’ people who provide care and compassion towards those on their final ‘journey’. To those doctors who have made specialist palliative medicine their career, they will argue vociferously for the Hospice to be seen as providing an essential specialist service based on rigorous scientific research that aims to deliver a pain- and symptom-free period during the palliative phase of illness up to and including death itself.
We must also recall that the Hospice culture has undoubtedly been influenced by its historical roots. The underlying assumptions of patient-centred care and compassion; the predominantly nurse-led service of the past; the active use of volunteers in patient care; and the values of Cicely Saunders and her concept of ‘total pain’ encompassing not only the physical but the psychological, social, and spiritual domains of patient care—all influence the work of the Hospice today. In this respect there is very much an emphasis on ‘continuity’ as much as ‘change’.
These days however the culture has also been influenced by a shift towards a more clinical, medicalized approach, one which now features staff who enter the Hospice for professional rather than altruistic reasons and has resulted in a more interventionist and scientific approach to the use of the latest drugs to deal with complex pain and symptom issues at the end of life. The Hospice image therefore is fractured by these cultural forces. On the one hand, the Hospice is seen as a revered local charity employing hundreds of local volunteers to assist in its ‘good work’ and currently raising over £3.5 million in voluntary income each year in the process. On the other hand, it has gained professional legitimacy from the science that has entered hospice work and from the development of the concept of ‘specialist palliative care’ which has seen hospices become the recognized ‘experts’ in end of life care. Nevertheless, since the establishment of St Christopher’s Hospice in 1967, referred to around the world as the first of the modern era, hospices have blossomed across the country as independent local charities responding to the needs of their communities. They have become successful because their approach to the care of the dying provided a solution to a problem that had been virtually ignored within the NHS (and which therefore the state was prepared to part-finance) and because of the significant and ongoing support that hospices receive from their local communities, both financially and through an army of volunteers, who took the hospice concept to heart and recognized that something practical could be achieved for local people through local action.
This chapter has investigated what could be termed the external perspective on the Hospice—one mainly aimed at comprehending issues of image arising (p.186) from the viewpoints of the general public and the wider healthcare community. We have particularly investigated problems linked to the Hospice’s image in terms of the efforts of staff and volunteers to ‘dispel the myths’ about the nature of hospice care and the type of work involved, as well as how the Hospice is perceived in the eyes of other healthcare professionals. We also examined, with a number of young doctors, the issue of choosing palliative medicine as a career, describing some of the reactions to this choice from fellow medical colleagues. Finally we discussed the apparent ‘confusion’ that Hospice staff feel can exist about the role of hospices in the minds of both GPs and consultants in specialist cancer hospitals. This, Hospice staff maintain, can reflect a form of judgemental ‘uncertainty’—one which can sometimes result in patients being referred to the Hospice ‘too late’ for the referral to have meaningful benefit.