Nurse Education Today (2005) 25, 326–332
Nurse Education Today intl.elsevierhealth.com/journals/nedt
Palliative care for end-stage dementia: A discussion of the implications for education of health care professionals Esther Chang a, Karen Hancock a,*, Kathleen Harrison b, John Daly a, Amanda Johnson a, Sally Easterbrook b, Michael Noel c, Megan Luhr-Taylor b, Patricia M. Davidson a a
School of Nursing, Family and Community Health, College of Social & Health Sciences, University of Western Sydney, Parramatta Campus, PO Box 1797, Penrith South DC 1797, Australia b Stream of Chronic and Complex Care, Wentworth Area Health Service, Australia c Wentworth Area Palliative Services, Australia Accepted 22 February 2005
KEYWORDS
Summary The increasing burden of chronic di8ease demands that palliative care clinicians address the needs of patients with non-malignant disease. This discussion document seeks to address some of the challenges to providing palliative care for end-stage dementia (ESD) and the need for skill enhancement in key providers of care. In spite of the intent, there is an apparent lack of appropriate, co-ordinated and comprehensive palliative care available for these individuals and their families. There is an absence of well-articulated models to assist health care providers of ESD clients. It would appear that the development and evaluation of guidelines, implementation of education programs and collaborative associations between palliative and aged-care providers of care are key strategies to facilitate palliative care for ESD clients. c 2005 Elsevier Ltd. All rights reserved.
End-stage dementia; Palliative care; Education needs of health care providers
Introduction
Dementia is an irreversible, progressive, organic mental disorder that may be caused by many conditions (Lloyd-Williams and Payne, 2002; Wilden and Wright, 2002). The most common type * Corresponding author. Tel.: +61298659053. E-mail address:
[email protected] (K. Hancock).
is Alzheimer’s disease. Dementia involves progressive loss of cognitive abilities, self-care and adaptation (Hogstel, 1993). While dementia is a major cause of death in Western Societies, the problem is that it is underdiagnosed (Hoyert, 1996). Advanced dementia refers to progressive immobility and reduced capacity for self-care; poor nutrition resulting from reduced fluid and li-
0260-6917/$ - see front matter c 2005 Elsevier Ltd. All rights reserved. doi:10.1016/j.nedt.2005.02.003
Palliative care for end-stage dementia: A discussion of the implications for education quid intake; infections related to immobility; skin breakdown and general debilitation. The final stages of dementia (or ESD) are characterised by the following: Neurocognitive: progressive worsening of memory and other cognitive deficits; profound confusion and disorientation; behavioural changes including combativeness, resistance giving way to apathy, then coma; progressive worsening of speech, inability to communicate; patient eventually becomes incoherent, mute, then unresponsive. Functional: independent mobility progressively lost, patient becomes bedbound, capacity for self-care progressively lost, patient becomes totally dependent. Nutritional: progressive loss of appetite and ability to swallow or eat independently, aspiration becomes increasing risk (Shuster, 2000). They may also experience complications such as bowel and bladder incontinence, fevers and infections and decubitus ulcers (Shuster, 2000). Terminally ill dementia clients often suffer from multiple ailments with as high as 91% having a comorbid condition (Moss et al., 2002). It is widely accepted that palliative care principles should apply to the care of end-stage dementia (ESD) clients (Abbey, 2003; Lloyd-Williams and Payne, 2002). In spite of this intent, there is an apparent lack of appropriate, co-ordinated and comprehensive palliative care available for these individuals and their families (Brodaty et al., 2003; Luddington et al., 2001; Shega et al., 2003).
Aims The aim of this discussion paper is to address some of the challenges to providing palliative care for people with end-stage dementia (ESD) and the need for skill enhancement in key providers of care.
Literature search In order to inform this discussion, databases searched included Medline, CINAHL, HealthStar, APAIS, The Cochrane Library, Internet search engines ‘google’ and ‘ninemsn’, and hand searching of journal articles and books related to palliative care and dementia. Key words included ‘dementia’ or ‘Alzhemier’ and the following: ‘palliative’, ‘residential care’, ‘residential care and palliative’, ‘nursing home and palliative’, ‘acute care and pal-
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liative’, ‘advance directives’, ‘education’, ‘terminal care’ and ‘pain’. This searched resulted in 58 articles from 1990 to 2004 that were relevant to the above objectives. Only material written in English was used, with the majority from the United States of America, The United Kingdom and Australia. Although there is a wide variation in the course of dementia among individual clients, in this paper the focus is on end-stage dementia, where the client is dying and has a consistent grouping of signs and symptoms, discussed below. Dates included were from 1990 to 2004, encompassing material written in English language, predominantly from the United States of America, The United Kingdom, and Australia.
Application of palliative care to non-malignant conditions such as dementia The World Health Organization (2002) defines palliative care as ‘‘an approach that improves the quality of life of individuals and their families facing the problem associated with life-threatening illness/ageing, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, and other problems, physical, psychosocial and spiritual’’. Implicit in the WHO definition is that palliative care applies to non-malignant terminal conditions, and individuals with such conditions would benefit from a palliative approach. However, a literature review conducted by Luddington et al. (2001) found that patients dying of non-cancer diseases were rarely offered specialist palliative care services, despite the finding that some patients dying of non-malignant conditions had needs comparable with those dying of cancer. Grbich et al. (2003) found that in residential care facilities funding arrangements were far inferior to those of specialist palliative care services, and ‘‘may inhibit the opportunity for residents and their families to interact with skilled professionals’’ (p. 11). There is some evidence of definitive strategies to overcome these barriers (Commonwealth Department of Health and Ageing, 2004; Lynn, 2001) and an increasing focus of health planners and policy makers on this challenging issue. Traditionally palliative care teams have tended to focus their care on individuals with cancer although this trend is changing. Shuster (2000)
328 reports that it is unlikely that these teams can provide the care needed for all individuals requiring palliation. However, some examples are provided below of hospice programs and case management programs that can provide appropriate and high quality care.
Challenges to appropriate palliative care for ESD clients In Australia and internationally, services for people with dementia are fragmented and lack comprehensiveness (Brodaty et al., 2003; Grbich et al., 2003; Shega et al., 2003). There are a variety of reasons that individuals with ESD do not receive adequate palliative care. One reason is the lack of recognition of dementia as a terminal illness: some physicians may not recognise that dementias lead to inevitable decline and death (Ahronheim et al., 2000). Difficulty in prognostication is also a barrier to receiving appropriate palliative care. Despite concerted attempts to develop models to predict death within 6 months it is still difficult to accurately predict prognosis with certainty (Shuster, 2000). Therefore, it can be difficult to know when terminal care should be provided in an individual who may survive for years. Another reason that inadequate palliative care is provided to ESD clients is that it is often difficult to determine their palliative needs due to communication difficulties. Also, the knowledge of palliative care comes mostly from work with cancer patients and, to a lesser extent HIV/AIDS patients (Connolly, 2001). This knowledge does not easily translate into information that is appropriate to care planning for the broader group of the frail elderly. Difficulties in prognostication also impact on the support given to family members of individuals with dementia. Dementia poses a great burden on families, increasing family members’ risks for mental and physical illness, social isolation and financial difficulties compared with similar age groups of non-caring dementia individuals (Ory et al., 1999). Albinsson and Strang (2003) found that staff working with palliative cancer care and dementia care stressed the importance of supporting family members. However, the type of family support needed partly differs because of different trajectories in dementia compared with severe cancer phases. For example, in the early phases of dementia, the client is often able to be cared for at home by family members, while at later stages; families
E. Chang et al. have different needs (Hanrahan and Luchins, 1995). Lack of referral and application for hospice services is also a barrier to appropriate palliative care for people with ESD. Many health professionals working in dementia care as well as the general public believe that dementia clients do not have access to Medicare benefits for such services (Head, 2003). Such a fallacy prevents many clients and families from accessing hospice and home assistance services (Head, 2003). Another challenge in determining palliative care needs of this group is that persons with ESD are unable to communicate their needs and levels of comfort or distress verbally (Evans, 2002; Shuster, 2000). Care delivered relies on interpretations of the caregiver and evaluation of symptoms by a provider of care. Verbal incapacities pose problems particularly for palliation of pain, with the potential being high for unrecognised, untreated or undertreated pain (Kovach et al., 1999). Simply because individuals do not complain about pain does not mean that they do not experience it. Although communication deficits, motivational and complex thinking impairments may blunt pain behaviour, they do not necessarily alter pain perception (Shuster, 2000). Abbey (2003) argues that the problem of an inability to communicate the experience of pain can be reduced when nursing staff base their decisions on an objective assessment of pain relief needs rather than subjective impressions. However, as discussed below, many providers of care lack the necessary education and skills to recognise that these symptoms may signify pain. Lack of knowledge and training also affects the quality of palliative care for clients with ESD (Kirchhoff, 2002). This could also partly explain why some health care providers believe that hospice care is not applicable to ESD clients.
The need for skill enhancement for key providers of care Staff caring for dementia clients has not received adequate education to enable them to adopt the advances that research has made in providing psychosocial and physical care for these people (Shanley et al., 1998). For instance, a US survey of 400 nursing homes investigating terminal care for nursing home residents with dementia found that the training of staff, specifically around issues of death and dying, terminal care for residents with dementia and pain control was most frequently reported as a practice that was the least well handled (Moss
Palliative care for end-stage dementia: A discussion of the implications for education et al., 2002). McCallion et al. (1999) reported that survey data confirmed that nursing assistants would welcome educational opportunities to enhance their communication and behaviour management skills with dementia clients, as well as obtaining more information about dementia. Stevens et al. (2001) express the dilemma in the delivery of palliative care to dementia clients: ‘‘How can the (caring) profession justify having so few of its members working in aged-care facilities or acute care hospitals trained or qualified in death and dying of older people when it has become its core business?’’(p. 189) Difficulties in delivery palliative care are not confined to residential facilities. Although staff in acute care settings tend to be more qualified and resourced than those in agedcare facilities, very little continuing education is devoted to the preparation of staff for aged care or death and dying (Stevens et al., 2001; Volicer, 2002). Given the number of older people who die in both aged care and acute care settings there is a need for staff to be trained in these areas in order to ensure best-practice for ESD clients (Stevens et al., 2001). Attitudes toward the care of people with ESD can also become more positive by encouraging the interface between the roles of providers of care as including both aged care and palliative care.
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are providers through is development of palliative care guidelines for aged-care facilities, and educational and training resources for staff involved in palliative care (Cairns and Yates, 2003). In addition to these efforts the University of Western Sydney has been proactive in including a core unit on chronic illness and palliative care in its new Bachelor of Nursing Program. While these are all initiatives in palliative care, they are not targeted specifically to the care of people with ESD. However, the knowledge and skills offered by these educational programs have relevance and transferability to this setting. Staff working in many nursing homes are not educated about advance directives a witnessed document that sets out the wishes of a person in relation to treatment decisions in advance (Doran, 2003) and the homes are not equipped to provide palliative care to residents who are dying (Molloy et al., 2000; Patterson et al., 1997). The area of advance directives compels health care providers to be better educated in palliative care for people with dementia so that they are more informed of the implications related to ‘do not resuscitate’ orders and other advance directives. Consideration must be given to areas such as artificial hydration, artificial nutrition, use of antibiotics, ventilators, hospitalisation, surgery, adequate pain control, and who is involved in the decision-making process (Moss et al., 2002). Failure to do so does not take into account the needs of clients and their families with end-stage disease.
Education of health professionals in palliative care Cairns and Yates (2003) discussed the educational and training needs of medical, nursing or allied health professionals who provide primary care with a palliative approach. Although, undergraduate programs now incorporate the principles and practice of palliative care in medical and nursing courses (Oneschuk et al., 2000; Ferrell et al., 1999), there is greater emphasis on pathophysiology and treatment than palliative care (Cairns and Yates, 2003). One of the reasons purported is the pressure to fit all subjects in to the curricula (Cairns and Yates, 2003). This suggests that palliative care is not given a high priority. Efforts to remedy the situation include the development of an undergraduate program in palliative medicine by the Australian and New Zealand Society of Palliative Medicine (Australian and New Zealand Society of Palliative Medicine undergraduate curriculum, 2004). The Australian Palliative Aged Care Project is another initiative aimed to enhance education for non-specialist palliative
Studies on education needs of aged-care facility staff Evans (2002) reviewed literature and research focusing on the utilization of hospice, end-of-lifecare, and pain and symptom management in the nursing home. She found that educational initiatives that address clinical skills in pain and symptom management, as well as how to approach the subject of death and dying in family members was required. Other US research has also found that education in symptom management was a major concern for nursing staff (Ersek et al., 2000). Froggatt and Hoult (2002) found that the majority of the 730 nursing staff surveyed working in agedcare facilities in the UK identified a lack of education to be associated with their effectiveness in working in these areas. Australian studies found that a lack of education and debriefing for staff, in addition to poorly resourced bereavement care impeded quality of care (Clare and De Bellis, 1997; Glow, 1998).
330 Maddocks et al. (1996) found a need for greater confidence and skill in staff in relation to symptom control for residents with terminal illness. Education needs identified by nursing home staff (careworkers, registered nurses and general practitioners) included pain and symptom management, counselling skills, the physiology of death and knowing when to withhold routine care. Staff also suggested that some general practitioners would benefit from further education. The researchers found that training offered to staff was taken up with enthusiasm. The educational needs of general practitioners are partly being met through a Government funded body designed to support inservice education of general practitioners (Maddocks et al., 1996). Resulting from this study was an education package was developed and circulated throughout Australia, and has now been revised and reprinted (Maddocks et al., 2001). Froggatt and Hoult (2002) reported that several interventions have currently being undertaken across the UK to improve the provision of palliative care in nursing and residential homes (Sidell et al., 1997; Frogatt, 2000). Some examples include clinical nurse specialists who have received educational needs assessment and education and training at the same time as direct clinical care (Welton, 1999; Fergus, 2001). Maddocks et al. (1999) established and evaluated a ‘link nurse’ program in South Australia aimed at improving communication between aged-care facilities and the specialist palliative service in that area. Each facility selected at least one nurse to undertake brief intensive palliative care training, with monthly meetings with other ‘link nurses’ and an experienced palliative care nurse to discuss issues and receive further training. Results were positive, resulting in organizational changes in some facilities, willingness to care for patients until death without unnecessary transfer, increased confidence in their role as carer, comforter and counsellor, and improved collaboration with family doctors (Maddocks et al., 1999). While Maddocks et al.’s (1999) study is a positive example, Froggatt and Hoult (2002) found that staff turnover, perceived staff shortages and shiftwork patterns were perceived by clinical nurse specialists as negatively affecting developmental work in care homes. The support given to the context within which delivery of care is being changed as well as the commitment of the organization (Froggatt and Hoult, 2002) influence new initiatives and developments in delivery of palliative care. Froggatt and Hoult (2002) argue that through adopting a proactive approach to developing practice, and by being in a position to tailor approaches to specific environments, clinical nurse specialists can facili-
E. Chang et al. tate change and improve the palliative care provided to dying residents. In addition, by developing greater working relationships with other health care professionals they can work together to provide seamless and cohesive care to their clients (Froggatt and Hoult, 2002).
Specific studies of education needs of staff caring for ESD clients Some researchers have evaluated the effectiveness of educating nursing staff in palliative care for dementia clients. McCallion et al. (1999) developed and evaluated a programme designed to help nursing assistants communicate more effectively with nursing home residents with moderate and severe dementia. Although the program did not improve the groups’ knowledge of dementia, it resulted in greater knowledge of caregiving responses and reduced staff turnover rates. Additional studies are needed with a larger and more diverse group of nursing homes. Shanley et al. (1998) evaluated a brief educational program for charge nurses on caring for people with dementia. The program was followed by a shortened consolidation period and an action plan carried out in an extended period of time following the course. Qualitative and quantitative analysis of the data demonstrated an increase in understanding of caring with people with dementia not only on completion but 6 months later. Participants recommended that future courses should include monitoring sessions of their progress in implementing their action plan. Kovach et al. (1999) evaluated an education program to address the discomfort needs of clients with moderate to severe dementia. They found that staff using the protocol they were trained in resulted in increased awareness of the resident’s state of discomfort and improved assessments. Findings of this study would be strengthened by the use of a control group, larger sample size and more rigorous measurement of variables. Given that family members typically play an important role in caring for dementia clients, there is also a need for education for family members about the palliative needs of dementia clients. A Study by Albinsson and Strang (2003) of dementia and palliative care staff investigated 437 informants’ perceptions of the most important measures for supporting families of late-stage dementia patients. They found that great emphasis was placed on the need families have for education about dementia. The memory of how a person dies can linger for families and loved ones (Enck, 1992). Family members can be relieved when they know
Palliative care for end-stage dementia: A discussion of the implications for education that the person is dying rather than experiencing new symptoms, and those palliative care principles can be applied rather than active intervention (Wilden and Wright, 2002). Education and communication to family members can ensure that their anxieties are reduced, as well as increasing their ability to provide appropriate care.
Conclusions and recommendations There is increasing emphasis on the need to focus on end-of-life palliation for persons with ESD in aged-care facilities without the need for transfer to hospitals. This paper has discussed the challenges and issues associated with palliative care for ESD clients. These include difficulties in prognostication, lack of recognition of ESD as a terminal illness, problems in client communicability that impact on symptom management; lack of skills and knowledge in providers of care regarding palliative care for ESD clients; and lack of access to specialist palliative care consultation. This article demonstrates the need for education programs to be developed and implemented by a multidisciplinary team in relevant health care settings. This is particularly important given the growing use of agedcare facilities as places of terminal illness in dementia clients, where it is unlikely that palliative care specialists will have the resources to provide care to all who need it. In order to improve interdisciplinary collaboration in the care of ESD clients it is recommended that education programs be developed and evaluated in multidisciplinary groups. Cairns and Yates (2003) recommend a wide range of teaching and learning strategies tailored to individual needs be implemented in palliative care given its holistic, diverse and multidisciplinary nature. In order to facilitate improved education, Grbich et al. (2003) recommend the setting of minimum palliative care competencies for providers of care; government financial assistance to upgrade knowledge and skills of all staff and help them meet competency requirements; bursaries or scholarships for staff to attend award or certificate courses relevant to their training needs; and development of a learning package for general practitioners. In residential aged-care facilities the adoption of a palliative care approach has been advocated, and guidelines to assist in this process are currently under development (Commonwealth Department of Health and Ageing, 2004). Minimal research has been conducted to evaluate the impact of education programs on outcomes. Given that the incidence of dementia will
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increase in the future along with the increasing proportion of older persons in our population, there is a clear need to address this issue. The authors are currently conducting a study that aims to develop an education program for health care providers as part of a new model of care for people with ESD. This model will be evaluated for its impact on improving the quality of care for this group.
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