To explore care staff and family carers perceptions of end ...
Authors
Caroline Reeves, Lecturer in Adult Nursing, School of Nursing and Midwifery, Keele University. Email: c.reeves1@keele.ac.uk. Telephone (01782) 679723
Alison Kate Lillie, Lecturer in Adult Nursing, School of Nursing and Midwifery, Keele University
Simon Burrow, Lecturer, MSc Dementia Care, Pathway Lead, School of Health Sciences, University of Manchester
A review of end of life care for people with dementia in UK care homes: staff and family carer perceptions.
Abstract
Dementia is the leading cause of death in England and Wales. Since the Dementia Strategy there has been an increasing emphasis on advance care planning, empowering people with dementia to express their wishes before mental capacity is lost, in order to promote a ‘good death’ enabling them to ‘die well’. This literature review of end of life care for people with dementia in English care homes shows that dementia is still not widely regarded as a ‘terminal condition’ and residents of care homes sometimes face unnecessary admissions to hospital in the dying phase. People with dementia at the end of their lives are still not accessing appropriate and timely palliative care routinely and advance care planning is still not part of routine dementia care despite the evidence and recommendations. This denies them the known benefits of reduced patient and carer distress, reduced hospital admissions, inappropriate treatments, upholding the principles of person centred care, decision making and ensuring that people with dementia can expect a ‘good death’.
Keywords
Dementia; Palliative; End of Life; Advanced Care Planning; Care Homes
Introduction
The National Dementia Strategy (DH 2009) highlighted the need to improve end of life care for people with dementia living in care homes along with the need to improve the overall quality of the care that they receive (Cook 2010; Nazarko 2009; Saini et al, 2016). Dementia causes problems in planning end of life care due to diminishing mental capacity, communication difficulties, and uncertainty in prognosis (Alzheimer’s Society 2012d). Awareness of issues concerning end of life dementia care is growing in social policy (Hennings et al 2010; van der Steen, 2014; Murphy et al, 2016) with the development of national and international policies over the past decade both in end of life care and dementia care (DH 2008; DH 2009; NICE 2013; DH 2012b; EAPC, 2014; WHO, 2012; NICE, 2015; DH 2016; NICE, 2017). The emphasis of the National Dementia Strategy (DH 2009) was on people with dementia ‘living well’ with appropriate support for as long as possible. One objective focussed on improving end of life care for people with dementia (DH 2009), with the aim that by 2015, people with dementia would be able to say ‘I am confident my end of life wishes will be respected. I can expect a good death.’ (DH 2010c, p 12).
The aim of the paper is to identify care staff and family carer’s perceptions of end of life care received by people with dementia living in UK care homes through collating the findings from existing UK based studies, in order to contribute an understanding of the end of life care currently being delivered in UK care homes and highlight elements for development in achieving the defined outcomes (DH, 2009).
Background
Dementia is now the most common underlying cause of death in England and Wales with 11.6% of deaths in 2015 attributed to it (Office of National Statistics, 2016). Other co-morbidities are often present which enhance the complexities of dementia care (Reinhardt et al 2014). Future predictions indicating that the number of people diagnosed with dementia will double by 2030, and triple by 2050 (WHO 2012), hence end of life issues in dementia care will become increasingly important for society as a whole (Alzheimer’s Society 2012d).
The overall costs of dementia to families, health, and social care providers are set to rise more quickly than the predicted increase in prevalence (WHO 2012). The prevalence of dementia in older adults residing in UK long term care homes is believed to be 70% (Alzheimer’s Society 2014a), equating to over two thirds of the population of residents (Alzheimer’s Society 2014a). Rising costs are attributed to the failure of current health and social care services to deliver appropriate dementia care (The Health Foundation 2011, Alzheimer’s Society 2014a)
Current white papers and reports have emphasised patient choice (DH 2010a, DH 2010b, DH 2010c, DH 2008), end of life care, advanced care planning and preferred place of death discussions (DH 2010a; DH 2008, DH 2009, DH 2013a) in order to achieve a ‘good death’ for everyone including those with dementia (Griggs 2010).
End of life care is not routinely considered (Alzheimer’s Society 2011) as dementia still fails to be recognised by some as a terminal condition (Sampson et al 2005), possibly as prognostication of the dying phase is problematic as the disease trajectory is unpredictable (Goodman et al, 2013). This inequality of care provision is further complicated by the physical deterioration and communication barriers in people with advancing dementia, or lack of knowledge and understanding among those providing care (GMC 2010). A major focus of concern is that people with dementia, their families, carers and health professionals may still not be perceiving dementia as an advancing progressive incurable disease that will eventually require end of life care (Saini et al, 2016). However, equalities and human rights laws (Human Rights Act, 1998) reinforce health and social care professionals’ duty to ensure people with dementia have equal access to end of life care.
Methods
A systematic search was conducted in July 2017 utilising the following databases: Medline; PsychInfo; Cochrane Collaboration: AMED; Cinahl and Pubmed. Search terms were developed using the SPICE (Setting, Population, Intervention, Comparators and Evaluation) acronym (Booth, 2006). Only papers that were published after the dementia strategy (DH, 2009) and carried out in the UK were included to reflect the care provision, national and local policies, guidelines and cultural and legal aspects of end of life care. Four key themes were identified as discussed below.
Care staff and family carers’ knowledge and understanding of dementia as a terminal condition.
All studies highlighted that there is still a lack of recognition of dementia as a terminal condition by some health professionals, carers and families. Whilst families appeared to be aware that their relatives’ memory would deteriorate, they were unaware that dementia was a terminal condition with physical consequences (Thune-Boyle et al 2010, Saini et al, 2016; Moore et al, 2017), and therefore lived with uncertainty for many years regarding disease trajectory and prognosis (Dening et al 2012). An example of this is expressed through a widower’s account of her experiences of caring for her husband with dementia as she explained “We didn’t realise what dementia meant, the implications….[of the condition]” (Livingston et al, 2010, p5).
In Thune-Boyle et al’s (2010) study, several members of the care staff interviewed demonstrated a poor understanding of dementia as a terminal condition. Moore et al (2017) identified that a lack of basic information left family carers struggling to adapt to changes caused by symptoms common in advanced dementia. Livingston et al’s (2012) study highlights a poor understanding of the condition, and the level of information given by care staff to family about their relative resulting in ‘staff often gave vague, contradictory answers…….’ (Livingston et al 2012, p 646). Care staffs confidence in their own knowledge and ability to have difficult conversations and provide end of life care is recognised in a number of the studies (Kupeli et al, 2016; Moore et al, 2017; Saini et al, 2016; Lee et al, 2017). This suggests that the lack of knowledge, confidence and understanding about dementia as a terminal condition could be a barrier to communication and information sharing between care staff and families. Therefore, it is possible that this may hinder or delay the dying phase being recognised or discussed earlier, and thus delaying a palliative approach to care, contributing a negative outcome rather than achieving a ‘good death’. “…being ignorant isn’t, going to save you in the long term…. need to know that this is a terminal illness.” [daughter] (Moore et al, 2017, p 8.).
Difficulties in information giving
Information is key to making informed decisions throughout the journey of dementia (Livingston et al 2010; Moore et al, 2017; Kupeli et al, 2016; Lee et al, 2017). The literature clearly demonstrates that the quality, quantity and timing of information given is variable but all studies agreed that it is vital in care planning (Livingston et al 2010, Dening et al 2012, Lawrence et al 2011). The wife of a person with dementia expressed the importance of gaining information in Livingston et al’s (2010) study: “The advice I would give is get as much information as possible, because information is really hard to get….” (p5).
Care staff had concerns surrounding whose role it was to deliver information, and some care staff felt that it was not appropriate to their role to deliver information and feared that they would be held to account if they delivered inaccurate information (Livingston et al, 2012). “I find that the nurses don’t really know how to start the conversation….it is then the depth of that discussion is often lacking” (Saini et al, 2016, p7). Saini et al (2016) identified that educating care staff about dementia and its progression was essential and the impact of building staff confidence in initiating end of life conversations also provided education to family members, ‘carers value receiving regular feedback about their relatives health condition and progression of dementia’ (Moore et al, 2017, p7).
The lack of information, discussion and planning left families unclear as to what would happen (Lawrence et al 2011; Saini et al, 2016). When asked, relatives in Thune-Boyle et al’s (2010) study said that they would have liked more information about advanced dementia symptoms and treatment options as it would have enabled them to plan ahead. “At least I will know what to expect. What the future will hold and how to prepare myself.” [Full time carer] (Thune-Boyle et al 2010, p268).
Family carers’ perceptions of symptoms such as weight loss and reduced food intake were perceived as signs of poor care provision and not the natural progression of dementia (Moore et al, 2017). Arguably, this further highlights the need for education, communication and understanding of dementia and its progression in order to plan appropriate care and support (Kupeli et al, 2016).
Nevertheless, receiving information is distressing, and some people expressed ambivalence about facing the future as the wife of a husband with dementia expresses in Thune-Boyle et al’s (2010) study: “….I haven’t broached the subject about the future. I just can’t bear to think about it really.”(p 268). This is mirrored in Livingston et al’s (2010) study with the wife of a patient stating ‘….your given all this information on what you should be doing, you don’t really want to know it.’ (p5), and Moore et al’s (2017) study husband stating “I think it might of helped, yes. Might have made me more fearful of the future of course.“ (p8). Arguably, a diagnosis of dementia comes as a shock at any stage and a grief process is undertaken, where initially ‘denial of the problem’ is experienced (Livingston et al 2010, p 4), therefore highlighting the need for care staff to be skilled and supported in delivering distressing information.
Some family members wanted information, but not all the information to be given at once as it was difficult to process, absorb and retain large amounts and became overwhelming. This is expressed by the Nephew of a relative with dementia in Thune-Boyle et al (2010) study: “….I can only process so much, you know, information. Like most people [I] feel a bit overwhelmed….” (p 269). Lee et al’s (2017) study suggested a gentle approach be taken to the discussion about dementia as a terminal illness, starting with asking the family their perception of their relatives health. However, Lee et al (2017) also recognised that staffs confidence and skills in initiating these discussions varied, with some staff acknowledging that they avoid such conversations.
The relationships between care staff, family members, and the resident.
The importance of building relationships has been demonstrated within all of the studies, and that this ability contributes to a person’s quality of life through preserving the person’s identity, wishes and appropriate end of life care planning (Hubbard et al 2002). However, communication difficulties by care staff were recognised as problematic (Saini et al, 2016). Lee et al (2017) found that in a care home where staff knew their residents well, were skilled, and could identify subtle changes in their residents and took a systematic approach to care through monthly meetings to review residents enabled them to identify individuals who were approaching end of life, improving outcomes and reducing unnecessary hospital admissions. “The difference it has made is that nowhere near the number of patients from that care home are being whipped into hospital” [Nurse, Specialist Palliative Care Service] (Lee et al, 2017, p5).
Lawrence et al’s (2011) study demonstrated how carer relationships changed as the resident with dementia declined and became bedbound nearing the end of their life. They concluded that care staff sometimes struggled to ‘to see that the person was still there’ (Lawrence et al 2011, p 419). A deputy care home manager expressed her uncertainty about the care needs and changing relationship with a resident with dementia at the end of life, demonstrating a change towards a more task focused approach to care (Lawrence et al 2011, p419).
Furthermore, if residents talked about their own death care staff ‘often distracted them or told them it was not time.’(Livingston et al 2012, p 645). When talking to relatives about dying, staff avoided words such as ‘death’ as they felt uncomfortable, and talked about appetite or mood instead (Livingston et al 2012). Care staff felt that they were ‘protecting everyone from upset’ (Livingston et al 2012, p 645) if they avoided conversations about people being at the end of life. Arguably, this highlights that death remains a taboo subject that people still feel uncomfortable to talk about despite close caring relationships.
Challenges of decision making in end of life care
Decision making on behalf of a person with dementia is complicated, and the responsibility for end of life treatment decisions are increasingly placed on families (Thune-Boyle et al 2010). This involves various difficult and emotive decisions to be made in the ‘best interest’ of the person with dementia often in the last days and weeks of their lives where the person is unable to contribute to the decision making process.
Care planning is seen as taking a proactive approach to end of life care as opposed to a reactive approach (Lawrence et al 2011). It is an evolving process which should continually reflect the changing needs, wishes and anxieties of the person with dementia and their family members (Saini et al, 2016). Unfortunately, the literature suggests that care planning can become task focused, prioritising the need for ‘Do Not Attempt Resuscitation’ documentation rather than the need for individualised on-going discussions about a persons care (Saini et al, 2016). “Do you want your relatives to go to hospital…to be resuscitated or not? They [care staff] do not know how to develop those conversations.”[Palliative Care Nurse] (Saini et al,2016, p8). Decisions about whether to hospitalise or to remain in the care home are difficult for family members particularly when an intervention had been successful previously and the person with dementia had recovered and the fear of guilt that the family member can be left with (Moore et al, 2017).
Care staff often believe that information about advance care planning has been given and discussed with families at diagnosis (Lawrence et al, 2011). However, despite a consensus that people should be given an opportunity to plan future care, the opportunity did not always arise (Lawrence et al, 2011). Studies show that awareness of advance care planning is variable (Dening et al, 2012; Lawrence et al, 2011) and that the lack of discussion and planning left families unclear as to what would happen (Lawrence et al 2011).
Conclusion and Recommendations
One of the key aims the Dementia Strategy (DH, 2009) was to improve end of life care for people with dementia by 2015, and enable people with dementia to be able to say ‘I am confident my end of life wishes will be respected. I can expect a good death.’ (DH 2010c, p 12). This remains part of the Prime Ministers Challenge in Dementia 2020 (DH 2015). This review highlights a number of significant challenges that still need to be overcome to ensure that this is achieved.
Dementia still does not appear to be recognised by care staff and family carers as a terminal condition, and there remains a lack of understanding of the disease trajectory, the physical deterioration as a result of dementia as well as cognitive deterioration (Thune-Boyle et al 2010, Dening et al 2012, Livingston et al 2010; Saini et al, 2016), arguably leading to unrealistic expectations, and therefore, limiting or delaying access to palliative care (Thune-Boyle et al 2010. Livingston et al 2012, Moore et al, 2017; Saini et al, 2016). It would appear that despite the inevitability of death, death and dying remain a taboo subject (Livingston et al 2012). Indeed, death and dying and with dementia still appears to hold a double stigma (Sampson 2005).
In order to provide and plan end of life care it is essential that accurate and appropriate information is communicated to the patient, family and carers, enabling people to make ‘informed decisions’ about care, and for carers to provide appropriate care (van der Steer et al, 2014). Findings suggest that through educating staff about dementia and its progression and developing care staffs confidence and skills in discussing with family members about their relatives condition and providing sensitive and timely information can help families to understand the progression of dementia and prepare for end of life (Moore et al, 2017; Saini et al, 2016; Lee et al, 2017; Kupeli et al, 2017). Moreover, good communication surrounding death in care homes is underpinned by staff who have developed good relationships with their residents, and their family. Language, staffing levels and communication skills can be significant barriers to this.
The benefits of advance care planning in reducing carer burden, hospital admissions, and inappropriate treatment have been highlighted in all of the studies. However, it would appear that due to lack of awareness of dementia, information and confidence in discussing dementia and end of life and carrying out advance care planning, along with the fear of being held to account and litigation if followed (Livingston et al 2012; Dening et al 2012) has contributed to the low uptake of end of life discussions and advance care plans for people with dementia. Hence, a higher priority needs to be given to implementation of all aspects of advanced care planning. A systematic approach to reviewing residents monthly with knowledgeable staff that were able to recognise and report changes demonstrated a proactive approach in planning their resident’s end of life care which showed improved outcomes, proactive care planning and reduced inappropriate hospital admissions (Lee et al, 2017). However, further research is needed to support the success of this approach.
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