End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia – A qualitative study

Introduction

There has been increasing international attention of governments and policy makers to the experience of dementia over the last decade. This is in part due to the anticipated rise in the numbers of people who will be diagnosed with the condition (International Association of Gerontology and Geriatrics (IAGG), 2011). Alzheimer’s Disease International (2012) estimated that 36 million people were living with dementia worldwide in 2010 and this is expected to increase to 66 million by 2030. The World Health Organisation (2012) describes this as a global public health priority and argues that there is an urgent need to improve the awareness and understanding of dementia across all sections of the global community. Despite recent national and international government and nongovernmental policy initiatives, the World Health Organisation (2012) acknowledges that globally, people with dementia have been repeatedly failed by governments and communities and the key role of family caregivers is often neither supported nor properly acknowledged.

Dementia is a multifactorial disorder, characterised by deficits in memory, language and personality change resulting in difficulties with self care management, self neglect and psychiatric syndromes (Harris, 2006; IAGG, 2011). Dementia has been shown to have an unpredictable disease trajectory (Department of Health (DH), 2009; Mitchell, Kiely, & Hamel, 2004; Mitchell, Kiely, Hamel, Park, et al., 2004), it often starts gradually and a typical trajectory can last over several years (Phillips, Ajrouch, & Hillcoat-Nalletamby, 2010). Survival rates for people with dementia are dependent on the age at which the disease is first diagnosed and can range from 2 years to 10 years (Rait, Walters, Bottomley, Peterson, & Illiffe, 2010; van der Steen et al., 2014). Most people with dementia also have at least one other co-morbidity (National Audit Office, 2007) and often present with complex physical and psychological needs particularly in the advanced stage of the disease (Sampson et al., 2008).

One of the major themes within the international literature is the agreement that dementia is a terminal condition, but there is a distinct lack of a coordinated palliative care philosophy (Gott, Ibrahim, & Binstock, 2011; Houttekier et al., 2010; Mitchell et al., 2009; Mitchell, Teno, Intrator, Feng, & Mor, 2007; Ryan, Gardiner, Bellamy, et al., 2011; van der Steen et al., 2013) and the difficulties associated with the diagnosis of the terminal stage (Lloyd-Williams & Payne, 2002; Mitchell, Kiely, et al., 2007; Mitchell, Kiely, et al., 2004). However, there is an emerging consensus that palliative care is applicable to all stages of dementia, which is especially relevant as the disease progresses to the advanced stage (van der Steen et al., 2014).

Within the United Kingdom the Department of Health (DH) End of Life Care (EoLC) Strategy attempted to apply the hospice model of care to general care within primary and community care services including care homes (DH, 2008). It emphasised the need to provide high quality care for all those approaching the end of their lives whatever their condition and whatever the setting in which they may reside (DH, 2008). The programme promoted three possible models to deliver palliative care in a variety of ‘non hospice’ care settings (DH, 2008): The Gold Standards Framework (GSF) (DH, 2008), End of Life Care tools and the Preferred Priorities of Care (DH, 2008) which includes Advance Care Planning (ACP). The Leadership Alliance for the Care of Dying People (2014) has produced a report and recommendations following a review into how end of life care was being interpreted and delivered by health care professionals. Variations in care for dying people were found by the review which could and sometimes did result in poor standards of care. The report emphasises the priorities of care that are required when it is thought a person is dying.

The World Health Organisation (WHO, 2011) described ACP as a discussion about preferences of future care between an individual and a care provider in anticipation of future deterioration. The benefits of ACP are viewed as providing an opportunity to anticipate future decisions relating to health and care needs, allowing the person to feel in control, make choices and provide an opportunity to initiate timely palliative care in life limiting conditions (DH, 2010; Hertogh, 2006). Ideally ACP should be undertaken with the person who has dementia early in the disease to ensure their wishes are represented and responded to appropriately. However, discussions such as these can be distressing to some people, especially if the health and or social care professionals do not have the appropriate training or interpersonal skills (DH, 2010). The Leadership Alliance for the Care of Dying People (2014) suggests that education and training programmes should extend beyond the immediate end of the training course and should include how to apply learning to practice and evaluation methods.

In the UK, ACP is a relatively new concept and has limited impact to date on end of life care in life limiting disease (Preston, Cohen Fineberg, Callagher, & Mitchell, 2011). The consequence of inadequate preparation for the deterioration of people with advanced dementia has the potential for adding to the suffering of the dying (Di Giulio et al., 2008). However, recent UK local and national initiatives for end of life care which relate to the GSF, and include ACP (DH, 2008, 2010) have been suggested to have the potential to improve end of life care (Shaw, Clifford, Thomas, & Meehan, 2010) for all life limiting conditions. Van der Steen et al. (2013: 10) suggests that ‘palliative care in dementia across dementia stages needs further study, especially given the increasing possibility of early diagnosis.’

There is some suggestion from the international literature that ACP can reduce some of the burden of decisions regarding end of life interventions and care (Engel, Kiely, & Mitchell, 2006; Lacy, 2006; Yeun-Sim Jeong, Higgins, & McMillan, 2011). Concerns over the legal standing of such plans and the complexity and range of different forms can contribute to the lack of implementation in care settings (Dobalian, 2006; Rurup, Onwuteaka-Philipsen, Pasman, Ribbe, & van der Wal, 2006).

For people with dementia, ACP provides an opportunity to anticipate future decisions relating to health and care needs as eventually the person loses capacity and will be unable to make their choices known. Studies also suggest that families struggle to represent the wishes of their relative and where previous discussions have taken place this can be beneficial (Black et al., 2009; Elliott, Gessert, & Peden-McAlpine, 2009).

Background

End of life care decisions for people with advanced dementia are reported as often being difficult for families as they appear to attempt to make appropriate and justified decisions within the context of the person’s life story (person centred) (Baldwin, 2004; Black et al., 2009; Goodwin & Waters, 2009; Moorman & Carr, 2008). Family caregivers anticipatory grief and isolation have been acknowledged as it becomes difficult to maintain and sustain relationships (Lawton, 2000) with the person with dementia due to deteriorating communication and memory loss (Lindstrom et al., 2011). These existential issues include experiences and feelings, which are not often addressed and managed by nursing and care staff (Papastavrou, Kalokerinov, Papacostas, Tsangari, & Sourtzi, 2007) and may impact upon appropriate end of life decision making.

In the North West of England, the National Health Service commissioned a study in 2007–2008 which involved an evaluation of the implementation of the GSF (DH, 2008), which included ACP, for people with dementia in five pilot care settings across Greater Manchester (McClelland, Ashton, Roe, Mazhindu, & Gandy, 2008).

Limitations of the evaluation were on the design as it was restricted to the perspectives and experiences of health professionals about ACP and those of family caregivers or the older people with dementia were not explored. These findings and gaps in knowledge were the basis that led to and has informed a follow on study (and PhD), which has addressed the question of investigating ACP from the perspectives of family caregivers and is the focus of this paper. This study advances our understanding of the experience of undertaking ACP with family caregivers, who often attempt to represent the person with dementia at the end of life and contributes to the evidence base.

Method

Discussion

There has been increasing attention to the experience of dementia over the last decade. This is in part due to the anticipated rise in the numbers of people who will be diagnosed with the condition. There is also growing recognition that people with dementia are entitled to palliative care. The European Association of Palliative Care (EAPC) published a White Paper on Dementia, which recognises that palliative care for people with dementia is distinct from those of other groups (van der Steen et al., 2014). Intervention strategies require resources and it has already been established that people with dementia have historically been a marginalised and disadvantaged group (WHO, 2012). Brinkman-Stoppelenburg, Rietjens, and van der Heide (2014) conducted a systematic review of the literature and suggested that although there is evidence that ACP positively impacts upon the quality of end of life care, more studies are needed to explore how complex interventions can be more effective in meeting the different needs of different people in a variety of settings.

In the later stage of the disease most people are not able to communicate their preferences which may leave them at an increased risk of symptom burden and prolonged suffering (Di Giulio et al., 2008). There is currently insufficient evidence to identify a ‘best’ approach to ACP for people with dementia. ACP with family caregivers is difficult but can provide an insight into what people with advanced dementia, who may be incapable of making informed decisions, have about what choices they may wish to make at the end of their life (Baldwin, 2004; Black et al., 2009; Goodwin & Waters, 2009; Moorman & Carr, 2008). This could include balancing competing demands including their relatives ‘historical identity’ and decisions which are consistent with the preferences and lifestyle of their family member. This was typical of the family caregivers in this study as they attempted to balance their knowledge of their family member and what would be in their best interests. However, discussing this informally and then formally writing it down in a care plan is a responsibility that most family caregivers found relevant but burdensome. Some studies have found that family caregivers are reluctant to engage in ACP and are unprepared for this responsibility (Ayalon, Bachner, Dwolatzky, et al., 2012). A limited understanding about the disease trajectory could also make it difficult to anticipate the role of an ACP for family caregivers (Caron, Griffiths, & Arcand, 2005; Dickinson et al., 2013). Family caregivers with limited knowledge of their family members previously expressed preferences could struggle to make appropriate decisions and would perhaps justify decisions based on what is the best thing to do in the circumstances which may or may not reflect the wishes of the person with dementia. Health professional’s cannot assume that the family caregiver has a depth of understanding of their relatives life story and therefore additional informal discussions may be required.

This study demonstrates that ACP can be facilitated with the family caregiver in the context of everyday practice. This study advances knowledge to assist nurses in care homes and other countries to develop and apply ACP for the benefit of residents and their families and to inform the development of services, care and further research. However, ACP is a complex activity with many influencing factors which includes the family caregiver’s readiness to participate in end of life care discussions. Samsi and Manthorpe (2011) suggest that ACP is driven by individual disposition and so there is a need to identify the rationale, the benefits and support available to family caregivers to complete an ACP. In this study, the family caregivers had been supporting the person with dementia for several years and would naturally feel protective towards the wellbeing. Recognising and maintaining the importance of promoting a person centred care approach to decision making, which maintains the integrity of people with dementia, and also acknowledging the importance of the relationship of trust and honesty between family caregivers and health professionals is an essential consideration. Family caregivers also need encouragement to ask the right questions during ACP to discuss the appropriateness of nursing and medical interventions at the end of life.

The WHO (2012) suggest a supported decision making model should be introduced soon after the diagnosis of dementia. The model supports the involvement of the person with dementia as much as possible at every stage of the disease, so when capacity is eventually impaired those supporting the person, including family caregivers, have a good understanding of their care preferences and wishes as they approach the end of their life and are in a better position to determine what the person would have wanted. The Royal College of Physicians (2009) support the view that ACP discussions should be offered early in the disease. However the timing of such discussions is a contentious issue. It is generally accepted that ACP discussions would be beneficial before capacity is lost, so that the person still has an opportunity to plan for their future care needs and preferences but also to identify personal goals they may still want to achieve (Robinson et al., 2012). ACP discussions at the point of diagnosis might be considered too early and stressful. Although Poppe, Burleigh, and Banerjee (2014) found that ACP discussions soon after diagnosis were enabling for the person with dementia to make their wishes known once they had had an opportunity to reflect about their diagnosis.

In this study dying with dignity was an important feature of the ACP discussions for family caregivers and included the discussion of complex nursing and medical interventions to relieve suffering or prevent undue distress in the dying resident, some of which were not familiar to the family caregiver. The participants in this study welcomed the opportunity to be involved in end of life care decisions and suggested that ACP allowed them to confront important and inevitable decisions that had to be made as the resident deteriorated. The involvement in ACP allowed the family caregivers to have some control over the caring process and remove the disempowerment of their caring role following admission to the nursing home (Molyneauex, Butchard, Simpson, & Murray, 2011).

Positive engagement and creating a person-centred approach by the nursing home promoted insights into the appreciation of how to work with family caregivers (Kellet, Moyle, McAllister, King, & Gallagher, 2010; Lindstrom et al., 2011; Moorman & Carr, 2008). In this study, there appeared to be an assumption by care staff in the way ACP was approached and that family caregivers wanted to be involved in these decisions and would welcome a role in determining a person’s best interest at the end of life. However in other studies nursing staff have avoided or been reluctant to discuss ACP (Sampson et al., 2008; Yeun-Sim Jeong et al., 2011).

The deviant case identified the important issue of ‘readiness’. Separation distress has been highlighted by Kiely, Prigerson, and Mitchell (2008) as a common death grief symptom for family caregivers of people with dementia before the actual death and sensitivity and support is needed to reduce distress. The deviant case highlights the severe emotional strain that some family caregivers have and continue to experience even when the person has been admitted to a long term care environment (Dempsey, 2013). Poor knowledge and understanding about the disease trajectory can impact upon the family caregivers relationship with health professionals and so bridging this gap in knowledge must be a priority before ACP discussions are attempted, otherwise it may be difficult for the family caregiver to accept why these discussions are needed.

Attitudes to ACP require further investigation, as failure to implement this early in the disease trajectory of dementia can have an impact on how the person is cared for at the end of life (Addicot, 2010). ACP as interpreted by family caregivers needs a more wide reaching research to explore the issues identified in this study to examine if ACP can, and does, impact upon end of life care decisions, actual care delivery provided and the choices people make about their preferred place of dying.

ACP has a role in the care of people with dementia. Discussing decisions in advance has the advantage of alerting the family caregiver to the potential difficulties experienced during the advanced stage of the disease. The EAPC suggests that care of the family is very important especially in their role of proxy decision maker in the more advanced stage of the disease (van der Steen et al., 2014). To do this the ACP facilitator needs to assess the current level of knowledge of the disease trajectory that the family caregiver has. A lack of understanding of the disease trajectory and a lack of a palliative care approach are cited in the literature as being one of the main barriers to effective end of life care for people with dementia (Di Giulio et al., 2008; van der Steen, Gijsberts, Knol, Deliens, & Muller, 2009; WHO, 2012).

Deciding when and if to withdraw active treatment and interventions and opt for comfort care has ethical implications. The difficulties associated with when and if the person with dementia has entered the dying phase is problematic for clinicians. In the advanced stage of dementia, ethical issues often include decisions relating to artificial hydration and nutrition (AHN), discontinuation of medication and pain management. Kumar and Kuriakose (2013) suggest that in relation to AHN, procedures should be judged on the amount of discomfort associated with it and consider what the person would have wanted. Parsons, Hughes, Passmore, and Lapane (2010) suggest there is limited evidence to guide clinicians on the discontinuation of medication for patients with dementia who are at the end of life. Ethical care is about not subjecting individuals to unnecessary and sometimes painful and distressing investigations and treatment because of uncertainty about the diagnosis of dying. The Leadership Alliance for Care of Dying People (2014: 24) identify the importance of ‘an individual plan of care which includes food and drink, symptom control and psychological, social and spiritual support is agreed, co-ordinated and delivered with compassion.’ People with dementia should have access to specialist palliative care services and family caregivers should be fully involved in all discussions on care interventions. ACP needs to be flexible enough to provide guidance but not diminish the clinical judgements of suitably qualified and trained professionals in dementia care. It should also be acknowledged that there is more to ACP than planning medical interventions and that comfort care needs to be explored and emphasised within discussions (Detering, Hancock, Reade, & Silvester, 2010).

Limitations of the study

There are limitations in conducting research within the context of one specialist dementia unit and with a small sample population. According to Evans and Goodman (2009) the intrinsic heterogeneity of nursing homes makes identifying representative care homes problematic.

The extent to which 12 respondents can be sufficient to represent other family caregivers in the UK who may experience similar circumstances is a limitation although the findings may be transferable to similar care settings. The sample population where all white British and therefore did not represent the diversity of the current UK population. Cultural and religious diversity was not represented in the sample. Further studies would need to address this ethnic bias and include a more representative sample.

Conclusions/Recommendations for practice

In dementia, ACP can provide an opportunity to anticipate future decisions relating to health and care needs as eventually the person loses capacity and will be unable to make their choices known. The findings from this study suggested that ACP provided a platform for family caregivers to confront their understanding of the end of life care that may be required for their relative before any crisis event. This advances knowledge related to practice and has the potential for nurses in care homes and in other countries to develop and apply ACP to the benefit of residents and their families. ACP should always reflect the person’s personal choices and preferences or if they lack capacity should indicate their best interests. All people must be given an opportunity to consider their best options for future care provision, regardless of the disease. Health professionals need to ensure, where possible, the individual preferences of people with dementia are known and recorded before capacity is lost.

The anxieties of family caregivers when acting as proxy decision making suggest there is a need to prepare adequately for ACP discussions. To do this the ACP facilitator needs to assess the current level of knowledge of the disease trajectory that the family caregiver has.

This will enhance the empowerment of individuals or family caregivers towards shared decision making and develop trusting relationships. ACP must be sensitive to the cultural and religious differences that reflect the demographics of a country and it should be a flexible document as people’s priorities and preferences change over time.

Health and social care professionals need to acknowledge and develop their own skills in relation to communication and knowledge of specific disease trajectories. Family caregiver’s role in ACP should be acknowledged and supported and be given due consideration to their own needs influenced by grief and anxiety. Continuous education and training in ACP should be available to all health and social care professionals and be included in undergraduate medical and nursing programmes.

The study demonstrates that ACP can be facilitated with the family caregiver in the context of everyday practice within the nursing home environment for older people with dementia. Family caregivers need encouragement to ask the right questions during ACP to discuss the appropriateness of nursing and medical interventions at the end of life.

The EAPC, together with other recent UK campaigns may offer future directions of policy, practice and research into palliative care in dementia across Europe as a result of widespread consultation and the identification of best practice initiatives, which should include ACP.