Written evidence submitted by the Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, School of Health Sciences, University of Nottingham, UK (ELC0030)
Executive Summary
The Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care was established in 2006 following a private donation to the University of Nottingham; it shares a name with the charity ‘Sue Ryder’, although comprises a separate entity. It is led by Professor Jane Seymour, with Professors Bridget Johnston and Karen Cox. We have an internationally recognised research programme informing understanding and improvement of care for people with chronic, debilitating and life threatening conditions. We work closely with patient and public representatives to prioritise research questions and identify key messages from studies and have partnerships with a range of organisations to enable knowledge transfer. The Centre provides undergraduate and post graduate education to nurses and other professionals working in health care. Graduates from its PhD programme come from many different countries world-wide. Further details can be obtained from the Centre’s website at: http://www.nottingham.ac.uk/research/groups/srcc/index.aspx
Our research and scholarly analyses of key challenges in the field provide insights across a range of topics of relevance to the Committee’s inquiry. Our evidence is organised under key themes from the Committee’s terms of reference.
3.1 Palliative care in the UK developed from the hospice movement and has always had an orientation towards the care of the dying cancer patient and the management of a clearly definable terminal phase of illness. Palliative care includes: specialist services (e.g. hospice care), which are a very scarce resource; a way of thinking about care and a set of basic skills (e.g. in communication/ pain relief and symptom control/ assessment) that any health or social care practitioner should have. It is now recognized that the focus of palliative care needs to broaden because of the ageing of the population and the corresponding increase in the incidence of long-term conditions, many of which are associated with prognostic uncertainty about the onset of the terminal phase and multiple morbidities. The use of the term ‘end-of-life care’ within national policy can be seen as an expression of intent to reach a wider set of patients in need, but has given rise to confusion about: a) the relationship between ‘palliative care’ and ‘end of life care’ and b) the balance that should be struck between care of the dying and the management of needs at an earlier point in the disease trajectory. Studies of health practitioners suggest they are unclear about the appropriate target groups and indicators for palliative care. For example, a comparison of practitioners’ experiences and perceptions with regard to ‘specialists’ and ‘generalists’ in palliative care in New Zealand and England shows confusion and uncertainty about the meaning of key terms and the roles and responsibilities of different categories of staff (1). A range of associated research has shown that patients without classically terminal illnesses have complex needs that are unrecognized and unmet. Frail older people are especially at risk (2).
3.2. We recommend that ‘end-of-life care’ is used in the purely descriptive sense: i.e. the services provided to individuals with a serious chronic illness or frailty that cannot be stabilized or reversed, until the point of death (3). In most contemporary policy and professional discussions in the UK, ‘end-of-life care’ is seen as something that happens in the last year of life. However, it is difficult, if not impossible to predict when someone enters their last year.
3.3 We recommend that the Committee closely examines international policy documents and evidence briefings (3) before deciding how to deal with the ambiguity in key terms relating to ‘palliative’ and ‘end-of-life care’ and to the issue of timing. For example, the Worldwide Palliative Care Alliance[1] recommends that the widely accepted 2002 World Health Organization definition of palliative care (see their report, page 7) should be adapted to acknowledge the rapidly increasing rates of chronic disease and ageing, and associated prognostic uncertainty.
4.1 While methodologies to identify patients in need of different types of support and to understand the extent to which available services meet patients’ and family carers’ end-of-life needs are poorly refined, general patterns are understood. Many symptoms, problems and needs are shared across conditions and people with chronic non-cancer conditions are likely to be older, to need support for longer and to experience longer term disability and physical and cognitive frailty than those with cancer(4, 5). People with uncertain prognoses are less likely to access specialist palliative care, including hospice care. They are more likely to experience fragmented and uncoordinated care across the course of their illness and to receive a sub-optimal quality of care during the dying phase (2).
4.2 Two thirds of general hospital beds are occupied by older people, half of whom have cognitive impairment due to delirium and / or dementia (6). A key barrier to improving quality in end-of-life care for such patients is the habitual emphasis on ‘diagnosing dying’ before considering the possibility that a palliative care approach may be appropriate. Our research shows that staff caring for frail and seriously ill older people find it extremely difficult to recognize the point at which a transition to a palliative care approach may be appropriate. Communication between staff and patients’ families tends to be poor, even when staff recognize its importance. Staff lack awareness of family concerns and are uncertain about what role families should play in decision making when patients lack the capacity to make some or all decisions for themselves. The extreme work-load pressures on staff caring for older people in hospitals means that care is often task oriented (7).
4.3 Eight per cent of cognitively impaired older patients admitted to hospital as a medical emergency die during their admission to hospital and 23% die within 90 days of being admitted to the acute hospital (8). However, staff from all disciplines and levels of seniority feel inadequately prepared to care for cognitively impaired patients, expressing particular concerns around communication, handling aggression and assessing patients (9). Focusing on these core areas in the care of older people would have a positive impact on experiences of end-of-life care for patients, their relatives and staff.
4.4 Our research in care homes (10) shows that older residents receive variable quality in end-of-life care largely because of clinical and organizational factors beyond the control of care home staff. General practitioner services to care homes are not always organized optimally because of poorly defined funding for the provision of medical care. Similarly, input from clinical nurse specialists or palliative medicine clinicians is rare and, where it occurs, is reactive to crisis situations. Consequently, pain and symptom control is sometimes poor. Care home nurses express anxieties about their responsibilities for end of life care, especially with regard to use of end of life care medications, often because of a lack of available support from NHS colleagues (11). Some care homes are isolated from wider NHS services, meaning that residents are unable to easily access the care that would be provided as a right to other patients. Patients would receive a better quality of end-of-life care if this was seen as an extension of chronic disease management, rather than a separate sphere of activity.
5.1 Many hospital admissions towards the end of life are currently unavoidable, because of a lack of appropriate community based resources to manage the last stages of a person’s illness and to provide support to family carers, where patients have these. A study of admissions to hospital among patients with objectively assessed palliative care needs demonstrates this clearly (12). The high occupancy of hospital beds by older people with cognitive impairment needs to be recognized and new systems of support for such patients within and outside hospitals should be introduced, in which health and social care are coordinated.
5.2 Our research shows that families of frail older people do not consider hospital as an intrinsically inappropriate place for their very elderly relatives to die (7). Many people change their preferences about place of care as the realities of illness and care-giving become clear. A systematic review of research about public attitudes to end-of-life care issues (13) shows that preferences for place of care and death are often moderated by prior experience and concerns about being a burden. A number of common concerns about dying can be identified across studies of public attitudes: leaving families behind, fear of the unknown, not wanting to be kept alive at all costs, not wanting to die alone, pain control, and the importance of quality of life over length of life when there is no hope of recovery. Improving the experience of dying in all care settings and enabling public education about end of life care issues, including advance care planning (14), should be top policy priorities.
6. How easily can patients withdraw from active treatment if that is their preference (including the role of advance care planning and Lasting Power of Attorney)?
6.1 By the time that many ill people face the situation in which withdrawal from active treatment may be appropriate, they may lack the capacity to make a decision for themselves. The Mental Capacity Act (MCA) (2005) came into force in England and Wales in October 2007 and provides a statutory framework to empower and protect people who may lack capacity to make decisions. It sets out the process for carers to assess capacity and to decide about best interests where a person lacks capacity to make a decision about any aspect of their ongoing care or treatment. It also allows people to plan ahead for a future time when they might lack capacity: this is called advance care planning. While the Act articulates core principles, applying the Act- whether in the small acts of day-to-day care or in end of life care decision-making situations- raises difficulties for care providers, patients and the public regarding interpretation and application. Our research (15) shows that key challenges are: a) implementation of best practice in complex clinical and / or social situations or where there is a relative lack of resources, and b) enabling operational understanding of MCA 2005 provisions amongst professionals, patients and the public so that superficial and potentially damaging ‘tick box’ approaches (e.g. with regard to ‘do not resuscitate’ decisions or preferences for place of care) are avoided.
6.2 Related research in the community (16) shows that advance care planning practice by health care professionals in the community is uncommon and tends to be postponed until death is clearly imminent. Where it happens it is often limited to documentation of a few key decisions (for example, place of care or place of death preferences) rather than precipitating any wider discussion with patients about their goals and values for future care and treatment. Staff express low awareness of current guidelines and rarely understand that advance care planning should be a means of extending personal autonomy in the event of lost capacity. Community palliative care nurses are well placed to carry out advance care planning and see it as potentially benefitting patients’ transitions to palliative care. However they express worries about lacking time to do so and are unsure about the right point to introduce advance care planning conversations (17). Patients often wait for professionals to introduce the subject and are surprised when this does not happen (18). Research among patients with terminal lung cancer shows that they see forward planning for dying and death as important but in practical and social terms (e.g. making arrangements for their families after death), rather than in the narrowly clinical and medical terms in which professionals tend to understand advance care planning (19).
6.3 While it is important to base care on patients’ choices where these are known, it is also important to have a broader perspective on the ethical goals of end-of-life care[2] so that people who cannot express choices or who have few obvious choices available to them are not excluded from consideration in policy and public discussions. Relieving suffering should be seen as the primary goal of end-of-life care.
7. The competence and capacity of the workforce.
7.1 There is good evidence that when healthcare workers are exhausted and overstretched, levels of compassion and dignity in care fall (20). In hospitals where patient to nurse ratios are higher, the part of their care most often sacrificed is communication - including advice giving and comforting/supporting patients and families (21). Nursing homes with higher ratios of qualified and nurses and care assistants to patients provide better care (23). Substantial skills are required for effective communication about end-of-life care. Training can have a positive impact – but it needs to be based on detailed evidence, and requires time and practice during training and in clinical care (24). Our research shows that communication interventions can help nurses to provide person centred care for people with end-of-life care needs in hospital and in the community (25; 26).
7.2 We recommend major investment in the nursing workforce and provision of evidence based training to ensure better end-of- life care, especially for frail older people.
[1] http://www.thewhpca.org/resources/global-atlas-on-end-of-life-care