possible model of palliative care for people with dementia. Focus group participants articulated a reluctance to offer people with dementia palliative care because their difficulties may not be the same as those of cancer patients, particularly in the realm of pain management. This amounted to a very different approach to palliation in dementia, relying on basic nursing skills and activities such as mouth care, pressure care and maintenance of dignity, which could be provided adequately by non-specialist teams:
Good symptom management, good emotional support, good support for the family, psychological and spiritual, social support, should be part and parcel of what everybody does and it should be offered to absolutely everybody I think.
Secondary care, specialist palliative care team
Discussion
This qualitative phase reveals significant barriers to implementing successful structured transitions to palliative care in the hospital setting. It is unsurprising that participants reported difficulties in recognising that a patient has entered the last 12 months of life given previous research regarding clinician barriers to prognostication, particularly in‘non-cancer’conditions100–104in which dying trajectories are typically
unpredictable.105These are issues that are not unique to the hospital setting. However, the implications
that this has for patient care in acute hospitals have not previously been explored in any detail. Our research found that prognosis does not appear to be routinely discussed with hospital inpatients,
representing a key barrier to a structured transition to a palliative care approach being initiated. Moreover, an‘either/or’approach to care was identified rather than concurrent palliative and curative treatment, as recommended in contemporary models of palliative care.30
Our research indicates a need for more effective communication within the hospital team, to achieve consensus that a patient has palliative care needs and subsequently to use this information to change the care plan. Two key barriers to this being achieved in practice were identified. First, the internal momentum of the hospital directed towards cure was seen to inhibit clinicians from standing back and thinking about the overall goals that should be informing patient care. Second, decision-making was identified as being consultant led, with more junior members of the team typically having few opportunities for input with regard to decisions about transitions to palliative care. Opportunities for nursing staff to feed into such decisions were identified as being particularly limited.
Even when consensus regarding a palliative care transition is achieved within the clinical team, information regarding such a transition was reported not to be conveyed routinely to patients and their families. That clinicians experience significant difficulties in‘breaking bad news’is well known. Uncertainties regarding
prognosis, unpredictable illness trajectories and difficulties maintaining hope after such communications were cited as particular barriers to these discussions across all settings.106Our data indicate that training
courses in communication skills need to be tailored to the acute hospital setting in recognition of the unique problems identified in this study.
This qualitative phase also confirmed that significant barriers exist to the provision of optimum palliative care for older people within acute hospital settings. Thefinding that older age can act as a barrier to accessing specialist palliative care resonates with some researchfindings106but not all. Indeed, a recent
study exploring equity of use of specialist palliative care in lung cancer clinic patients found that age was not associated with receipt of such services, and referralwasbased on need.107However, health
professionals in our study reported that they often believed older people to be less requiring of palliative care than younger people, as a consequence of death being more expected in older people and the perception that older peoplefind it easier to come to terms with a terminal diagnosis. It seems that, for a proportion of health professionals, the belief that older people have fewer requirements for specialist palliative care may be a factor affecting referral patterns and leading to reduced utilisation of
specialist care.
Provision of good palliative care for older people is also crucially mediated by a situation in which the role of thefirst line of health professionals for older people, specifically geriatricians, is ill-defined in terms of responsibility for providing palliative care.108A further debate surrounds the definitional and conceptual
issues relating to palliative care for older people. Thefindings show that, for generalists in particular, palliative care is often equated with dying. This conceptual issue may present a further barrier to optimum care, particularly for patients with non-malignant disease for whom‘dying’may not be diagnosed until close to death. Ensuring both the early introduction of palliative care and continuous palliation is central to achieving improvements in the end-of-life experiences of older people. Indeed, overall, there is an urgent need to clarify the terminology used within palliative care to ensure consistency in clinical practice. Findings from this study indicate that a situation exists in which specialist palliative care services are still inextricably linked with cancer care, despite substantial evidence to suggest that patients with advanced non-malignant disease would benefit from this care.109Older people are proportionally more likely to die
from conditions other than cancer and hence are disadvantaged by diagnosis in terms of access to specialist palliative care.3Thefindings also suggest that there are particular barriers to making the
transition to a palliative care approach for people with dementia.
Clinicians alluded to the notion that dementia is not recognised as a cause of death and that candidature for palliative services is therefore questioned. Mitchell and colleagues110have demonstrated that
practitioners hugely underestimate mortality rates of people with dementia. Poor knowledge amongst some teams is apparent here, but uncertainty about prognostication may account for some of these shortcomings.11Inadequacies of a systemic nature may also be a result of the traditional role of hospices
(as providers of palliative care to people with cancer) and reliance on cancer charities as a source of funding. Certainly there appear to be concerns about the resources available to provide palliative services to an ageing population, but little critical debate about how these challenges might be overcome using different models of provision. These data also point to limited confidence amongst some health-care teams in the assessment and management of dementia at the end of life.111
This exploration of the experiences of health-care practitioners in the provision of palliative care for older people and those with dementia has drawn attention to a number of ongoing problems and challenges in clinical practice. Data from these focus groups and interviews with health professionals would support the notion that a transition to good-quality palliative care continues to be the exception and that collaborative working relationships between acute care and primary care, as well as among mental health specialists and others, are not always apparent. The data suggest that teams need to build on the internal resources available to them to be in a position to recognise the needs of people with dementia and meet the challenges they present.