Palliative/End of Life Care

Palliative and end of life care for people living with dementia is a relatively new concept, having been previously restricted to terminal illnesses, such as cancer. The body of work examining these themes in Ireland has grown in recent years and includes articles from the perspectives of people with dementia, families and various groups of health care professionals. The section also includes papers on advance care planning.

Palliative and end-of-life decision-making in dementia care.

Mitchell, G
International journal of palliative nursing
In this paper Mitchell (2015) considers palliative care across a number of disease models, highlighting the complexity of palliative care in the context of dementia. He discusses some of the cornerstones of good palliative care, such as enabling autonomy, shared decision making and empowerment.
Where there is cognitive decline these become increasingly challenging concepts. As a result the timeliness of palliative care for people with dementia is crucial. With many other conditions, shared decision making often begins in the diagnosis stage but this is challenging in dementia as diagnosis can be a very lengthy process. Mitchell argues that shared decision making in dementia care is founded on the principle of beneficence. He suggests people with dementia should be supported at an early stage in their dementia to become involved in shared decision making and that this process will often involve family and other professionals. These discussion should include advance care planning. He concludes that not every person with dementia will want to discuss end of life care, but every person should be included in decisions about their own care and that nurses should always put the patient at the heart of any decision making process.

There’s a Catch-22’–The complexities of pain management for people with advanced dementia nearing the end of life: A qualitative exploration of physicians’ perspectives.

De Witt Jansen, B., Brazil, K., Passmore, P., Buchanan, H., Maxwell, D., McIlfatrick, S.J., Morgan, S.M., Watson, M. and Parsons, C.
Palliative medicine
In this study De Witt Jansen et al. (2017) interview physicians from hospice, hospital and general practice.
They explore physician perspectives of the barriers to pain management among people nearing the end of life with dementia and on the impact of these barriers on outcomes and how they overcome these challenges. The most common barrier identified was the difficulty in diagnosing pain. Where a patient is no longer able to communicate verbally, physicians rely on nonverbal and physical signs but are concerned about the potential to misinterpret these cues. The complexities of complex comorbidities, low body mass index and ageing physiology were also identified as barriers. This is further complicated by the fact that many patients in this group are already on other medications, resulting in the choice of suitable analgesics being restricted. Many patients are also unable to take oral medication, and more agitated patients often remove syringe drivers. All respondents believe that input from families and other professionals is essential if they are to provide effective pain management. The findings from this study are being used to develop and pilot an intervention that aims to develop a gold standard in pain management for people with dementia.

Health care professionals’ perspectives of advance care planning for people with dementia living in long-term care settings: A narrative review of the literature.

Beck, E.R., McIlfatrick, S., Hasson, F. and Leavey, G
Beck et al. (2015) provide a narrative summary of evidence on the perspectives of healthcare professionals (HCPs) on advance care planning (ACP) for people with dementia living in long term care.
The authors found a lack of knowledge, both of dementia and of advance care planning for people with dementia. Many HCPs do not recognise dementia as a condition requiring palliative care and they found a lack of responsibility for initiating this care with many professionals seeing it as the responsibility of others. Many of the barriers highlighted in the review were ethical and moral in nature and included the issue of capacity. The authors suggest the evidence points to a need for improved knowledge in dementia set in the context of training that addresses preconceptions of palliative care and has an emphasis on integration. They argue that further research is urgently needed to inform the development of interventions that support the implementation of ACP by health care professionals.

Exploring healthcare assistants’ role and experience in pain assessment and management for people with advanced dementia towards the end of life: a qualitative study.

Jansen, B.D.W., Brazil, K., Passmore, P., Buchanan, H., Maxwell, D., McIlfatrick, S.J., Morgan, S.M., Watson, M. and Parsons, C.
BMC Palliative Care
Jansen et al (2017) used a series of semi structured interviews to explore the experience of health care assistants (HCAs) in assessing and managing pain among people with dementia nearing the end of life.
They found that although HCAs are not trained in formal pain assessment they regularly carry out informal relationship centred pain assessment. As staff who potentially spend the greatest amount of time with residents they have considerable knowledge on the residents usual behaviour and condition and are well placed to notice any changes. The reporting of pain was found to be very dependent on the HCA’s relationship with other healthcare staff. Where these relationships were good and HCAs felt valued and appreciated, comprehensive pain reporting resulted, but poor relationships resulted in perfunctory, ambiguous reporting. The authors conclude that HCAs have much to contribute in this area and that it is essential they are provided with support, education and training but more significantly that the cultural undervaluing of the role of the HCA must be challenged.

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research.

Fox, S., FitzGerald, C., Dening, K.H., Irving, K., Kernohan, W.G., Treloar, A., Oliver, D., Guerin, S. and Timmons, S.
BMC Palliative Care
Fox et al. (2017) report on the outcomes of an interdisciplinary workshop highlighting gaps and recommendations for research in palliative care for people with dementia. 49 experts, representatives from national, voluntary and charitable organisations and family carers attended.
The main areas under discussion included research in neurodegenerative disease, research priorities in advance care planning and personhood in end of life care, research topics in the care of advanced dementia at home. Two frameworks were proposed for planning and conducting research. The authors conclude there is the potential to improve palliative care for people with dementia through the use of palliative care frameworks but that a stronger evidence base is required.

Achieving consensus and controversy around applicability of palliative care to dementia.

van der Steen, J.T., Radbruch, L., de Boer, M.E., Jünger, S., Hughes, J.C., Larkin, P., Gove, D., Francke, A.L., Koopmans, R.T., Firth, P. and Volicer, L.
International Psychogeriatrics
This paper by Van der Steen et al. (2016) documents the process and results of achieving consensus among experts on a Delphi Panel considering domains for palliative care in dementia and recommendations for optimal care.
Sixty four experts in dementia, palliative care or both made up the panel and this included representation from Ireland. While there was consensus among the panel on the benefits of palliative care in dementia, there was controversy when it came to applying palliative care early in disease progression. There were concerns that not enough account would be taken of existing dementia expertise; about labelling palliative care as care that is exclusively for people who are dying and a fear that people with dementia may be undertreated or abandoned when an early model of palliative care is applied. The authors conclude that further studies are needed examining the early application of palliative care and the integration of expertise in dementia and palliative care. They recommend an ongoing dialogue between both areas of expertise.

Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians.

Van der Steen, J.T., Galway, K., Carter, G. and Brazil, K.
Archives of Gerontology and Geriatrics
This paper examines the perceptions of physicians in the Netherlands and Northern Ireland on when to initiate advance care planning (ACP) with people living with dementia. Van der Steen et al. (2016) were particularly interested in whether there were specific differences by country.
There was general agreement in both countries that physicians should take the initiative on introducing ACP but stronger levels of agreement among Dutch physicians. However there was wide variability in agreement on initiating ACP at diagnosis, particularly in Northern Ireland. The authors found that the diversity of perceptions among physicians was not explained by country with the only independent predictor being a stronger role perception; physicians who agreed that they should take the initiative were more inclined to agree that ACP should begin at diagnosis.

Providing optimal palliative care for persons living with dementia: a comparison of physician perceptions in the Netherlands and the United Kingdom

Brazil, K., Galway, K., Carter, G. and van der Steen, J.T.
Journal of palliative medicine
In this paper Brazil et al. (2017) set out to measure and compare physician perceptions on the recently issued European Association for Palliative Care (EAPC) framework, defining optimal palliative care in dementia. A cross sectional postal survey was used in the Netherlands and Northern Ireland.
In both countries the three most important domains in optimal palliative care were identified as treating symptoms for comfort, family involvement and person centred care, supporting EAPC recommendations. Both countries identified the same barriers including lack of education among professional teams and lack of awareness among the general public. However barriers were perceived to be lower in Netherlands. The authors recommend that in the Netherlands an increased focus on person centred care, public awareness and acceptance of palliative care for dementia is required while in N.Ireland there should also be a focus on person centred care but additionally on specialist support and initiatives encouraging family involvement.

General Practitioners Perceptions on advance care planning for patients living with dementia.

Brazil, K., Carter, G., Galway, K., Watson, M. and van der Steen, J.T.
BMC Palliative Care.
This paper reports on the results of a survey among GPs in Northern Ireland that examined perceptions of advance care planning for patients living with dementia.
Most respondents agreed with the value of discussing advance care planning (ACP) early in dementia but a sizeable number had reservations about doing this at the point of diagnosis. There were concerns about adding to anxiety of the patient and their family and GPs felt the decision on when to initiate discussion should be determined by the readiness of the person with dementia and their family. Most GPs see shared decision making as a clinical practice goal but highlighted the difficulties families have in understanding their relative’s prognosis and the complications of life sustaining therapies. The study evidences the need for education for families but also for GPs on how to better engage with families.

Dementia, identity and the role of friends.

Cowley, C.
Health Care and Philosophy
This paper by Cowley (2017) challenges the position of Dworkin (1993) on advance refusal of interventions in the case of dementia. Dworkin described Margo, who on finding out she had dementia wrote an advance refusal of treatment in the event she became severely demented.
10 years later, living wth advanced dementia, Margo is facing life threatening pneo. Margo at this point in her life is cheerful and content. Dworkin argued that the advance refusal shold be honoured, as this was made when her identity was intact and her ability to reason remained. This he believed took precedence over any choice she mght make now. Cowley suggests that Margo's views today are no less significant than her views then, although different. He challenges the primacy of reaon in decision making and the notion of what contitutes identity. He raises the idea of friends having a role in sustaining the identity of the person with dementia.and considers the ethical reluctance of a doctor faced with a happy, cheerful person who appears to have no desire to die, despite her earlier advance directive. Using this particular example, Cowley tackles the complex moral and ethical maze of advance directives in dementia.

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

Fox, S., Fitzgerald, C., Harrison Dening, K., Irving, K., Kernohan, W.G., Treloar, A., Oliver, D., Guerin, S. and Timmons, S.
BMC Palliative Care
This paper by Fox et al. (2017) provides a summary of an interdisciplinary workshop that was held in Ireland in 2016 on palliative care for people with dementia.
The aim of the workshop was to discuss the evidence base for palliative care for people with dementia, to identify the gaps for clinical research and to make recommendations for interdisciplinary research practice. The workshop was planned by a consortium of people who represented two universities and five not-for-profit organisations working in the areas of palliative care and dementia. A short list of priorities areas was drawn up for the workshop and speakers invited to present at the workshop, which is described in the paper. The paper summarises the key research priorities for each of core discussion topics. These are: an overview of research in neurodegenerative disease; frameworks for planning and conducting research in palliative care and dementia; research priorities in Advance Care Planning for people with dementia; research priorities in personhood in end of life care; and research topics in the care of advanced dementia at home and in 24-hour care; and other research priorities.

Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial

Brazil, K., Carter, G., Cardwell, C., Clarke, M., Hudson, P., Froggatt, K., McLaughlin, D., Passmore, P. and Kernohan, W.G.
Palliative Medicine,
This paper by Brazil et al. (2017) outlines an advanced care planning (ACP) intervention that is focused on families and presents the findings of a study evaluating the impact of the intervention in dementia care nursing homes.
It tested the primary hypothesis that the intervention would reduce family uncertainty in decision-making concerning their relative with dementia. The study was designed as a paired cluster randomised trial, with 24 nursing homes in NI participating. The paper describes the ACP intervention and its components and the primary and secondary outcomes measures. Hospitalisation rates, completion rates for DNR orders and place of death from nursing home administrative records were also recorded. A total 51 family carers in the intervention group completed baseline questionnaires, intervention and follow-up questionnaire and 91 family carers in the usual care group completed the baseline and follow-up questionnaire. The study found that the ACP intervention significantly reduced family carer uncertainty in decision-making concerning the care of their family member. It also improved family carer satisfaction with nursing home care. However, there was no impact on family carer psychological distress or the number of completed DNRs. It did not lead to reduced hospitalisations or number of deaths in a hospital.

Nurses' experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study.

De Witt Jansen, B., Brazil, K., Passmore, P., Buchanan, H., Maxwell, D., McIlfactrick, S.J., Morgan, S.M., Watson, M. and Parsons, C.
Journal of Clinical Nursing
This is one of three papers reviewed here that are part of a body of work aiming to inform the development of a complex intervention to improve pain assessment and management among people with dementia nearing the end of life.
This particular paper reports on the experiences of nurses from hospice, acute care and nursing home care. While De Witt Jansen et al. (2017) found a committment to policy and clinical recommendations on management of pain, they also found that nurses face considerable challenges in managing pain for people with dementia in the last month of their life. Administering analgesia was a challenge for nurses in all settings and included issues such as patients refusing medication and patient’s physical decline creating difficulties in administering medication. Nurse physician relationships were impacted on by the type of care environment with more positive experiences being reported among hospice nurses. The authors found that access to interactive learning and development was not equitable. Hospice nurses were better satisfied with the opportunity and quality of professional development while funding, travel and time constraints were an issue among acute care and nursing home nurses.

Preferences of residents with dementia for end of life care. Nursing Older People, 29(2), pp.26-30.

Mulqueen, K. and Coffey, A.
Nursing Older People
In this study Mulqueen & Coffey (2017) employed nominal group technique to explore residents preferences for their end of life care and nurses perceptions of these preferences. They found that residents wanted to be pain and worry free in peaceful, quiet surroundings.
They wanted to be in their own room with their own things around them and were unanimous in their desire to have family around them. Residents also wanted to be cared for by staff who knew them. While some nurses’ perceptions matched residents’ preferences there were differences. Nurses also prioritised the resident being pain free and the involvement of family. They highlighted the importance of communication; being able to understand non-verbal cues, and advance care planning. The authors conclude that a generic approach to end of life care is not adequate and that there is a need for patients to be involved in future studies so that approaches are developed from a sound evidence base.

General practitioners’ perceptions of the barriers and solutions to good-quality palliative care in dementia.

Carter, G., van der Steen, J.T., Galway, K. and Brazil, K
Using a quantitative survey Carter et al. (2017) explored the perceptions of GPs across Northern Ireland on barriers and solutions to the provision of good quality palliative care for people with dementia.
They identified 5 overarching themes: lack of knowledge and understanding; limited availability of resources; mismanagement of appropriate care; poor interdisciplinary team approach and family support and involvement. Solutions identified included enhanced training and education, increased funding and greater family involvement. The authors acknowledged the limitation of the study being carried out in Northern Ireland but point out that the findings are in line with existing research.

The unmet palliative care needs of those dying with dementia.

Dempsey, L., Dowling, M., Larkin, P. and Murphy, K
International journal of palliative nursing.

In this paper Dempsey at al. (2015) review the existing literature on the palliative care needs of people with dementia.

They find that people with dementia do not receive good end of life care (EOLC) and that access to palliative care is an issue with people with dementia still receiving fewer referrals to palliative services than those with cancer. The literature highlights GP difficulties in diagnosing dementia and the difficulties of identifying the end stages of dementia. The authors suggest a generic model for palliative care in dementia is required and that health care providers need to recognise dementia as a terminal condition.

Staff perceptions of essential prerequisites underpinning end-of-life care for persons with intellectual disability and advanced dementia

Journal of Policy & Practice in Intellectual Disabilities

This paper by McCarron et al. (2010b) discusses three key themes emerging from focus groups with staff working in ID care settings and a specialist palliative care provider in ROI supporting persons with an intellectual disability and dementia at the end of life.

The three key themes were: readiness to respond to end of life care needs; the fear of swallowing difficulties and environmental concerns, and ageing in place.

The Role and Timing of Palliative Care in Supporting Persons with Intellectual Disability and Advanced Dementia (2011)

Journal of Applied Research in Intellectual Disabilities

This paper by McCarron et al. (2011) identifies seven inter-related themes thought to influence the role and timing of palliative care for people with an intellectual disability who have dementia. 


Supporting persons with Down syndrome and advanced dementia: challenges and care concerns


In this paper, McCarron et al.

(2010a) highlight the complexity of providing good end of life care for people with an intellectual disability and dementia and the need for further training and support, suggesting a more collaborative approach between Specialist Palliative Care Services and Intellectual Disability Services.  

Cause of death in Alzheimer's disease: a cohort study

TODD, S., BARR, S., A.P.
QJM: monthly journal of the As

In this prospective study, Todd et al.

(2013) examined the cause of death recorded on death certificates in an cohort of patients with Alzheimer’s disease in NI and compared these findings with expected death rates from the population to determine the accuracy of death certificate completion for a cohort of people with AD. The study found that AD was recorded on almost two-thirds of death certificates of AD subjects who died during follow-up. It found significant excess mortality in the AD group when compared with the NI population and that AD and pneumonia were the most significant underlying causes of death in the AD group. To explain differences between findings in the AD group compared with a control group, the authors conjecture that cause of death documented may be affected by the physician’s knowledge of the patient or reflect the approach to management of patients with end-stage dementia. 

Challenges that specialist palliative care nurses encounter when caring for patients with advanced dementia

International journal of palliative nursing

In a literature review examining specialist palliative care for people with dementia Barber and Murphy (2011) reported that there is very little information available about end-of-life care in advanced dementia from the viewpoint of the SPC nurse.

The review suggests that expertise in both dementia care and palliative care needs to be combined and that further research is required to establish guidelines to assist with specialist training of staff.

Guidelines for nursing homes delivering end-of-life care to residents with dementia across the island of Ireland

Quality in Ageing & Older Adults

Cahill et al.

(2010) found that bereaved spouses of people with dementia who had been living in nursing homes were generally satisfied with the end of life care that their relatives had received and valued good personal care underpinned by a person-centred philosophy, being kept informed of their relatives’ care and having an opportunity to participate in appropriate decision-making at the end of life.     

A cross-national cross-sectional survey of the attitudes and perceived competence of final-year medicine, nursing and pharmacy students in relation to end-of-life care in dementia

Palliative medicine

De Witt Jansen et al. (2013) compared the attitudes to people with dementia of final year medical, nursing and pharmacy student groups in the US and NI, and also examined perceived levels of confidence and competence in providing end of life care.

They found that students across the three professions in both the US and NI held positive attitudes towards people with dementia but reported different levels of competence in end of life care that was largely linked to differences in disciplinary training   

Assessment of factors that influence physician decision making regarding medication use in patients with dementia at the end of life

International journal of geriatric psychiatry

Parsons et al.

(2014) assessed the extent to which patient-related factors and physician's country of practice influenced decision making among hospital physicians and GPs regarding withholding or discontinuing key medications in patients with end-stage dementia in NI and in ROI. The study evidences uncertainty and variation around the prescribing of antibiotics and the discontinuation of anti-dementia medication. There was less variability in decision-making related to statins and anti-psychotic drugs. The authors found that for all medications, care setting and physician's country of practice had the strongest and most consistent effects on decision making. 

Quality of end-of-life care for dementia patients during acute hospital admission: a retrospective study in Ireland

General hospital psychiatry

In a retrospective case study review, Afzal (2010) analysed potential differences in quality of end of life care for people with dementia during their final hospital stay compared to people without dementia.

 The study highlights potential inequalities and concludes that people diagnosed with dementia have less access to palliative care, and their caregivers are given less opportunity to take part in decisions about treatment.