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Supportive and palliative care for patients with chronic mental illness including dementia

Lloyd-Williams, Mari; Abba, Katharine; Crowther, Jacqueline

Current Opinion in Supportive and Palliative Care: September 2014 - Volume 8 - Issue 3 - p 303–307
doi: 10.1097/SPC.0000000000000064

Purpose of review People with preexisting mental illness are known to have difficulty accessing healthcare services including palliative care and people with dementia have similar issues accessing palliative care.

Recent findings The review addressed the time period from January 2013 to March 2014. There were few articles addressing issues for palliative and supportive care for patients with preexisting mental health issues. The main factor that would improve care is interdisciplinary working between mental healthcare teams and palliative care teams. In contrast, there were many published articles on the palliative and supportive care needs for people with dementia. These articles included consensus statements, models of care; studies of why models of care, for example Advanced Care Planning were not being implemented; and carer reports of care in the last year of life.

Summary Urgent research is required as to how support for people with preexisting mental illness who require palliative care can be improved – excellent liaison between mental health and palliative care teams is essential. There is much research on palliative care needs for people with dementia but an apparent lack of innovative approaches to care including care of people within their family home.

Academic Palliative and Supportive Care Studies Group, Institute of Psychology, Health and Society, Faculty of Medicine, University of Liverpool, Liverpool, UK

Correspondence to Mari Lloyd-Williams, University of Liverpool, Liverpool L69 3GB, United Kingdom. Tel: + 44 0151 794 5605; fax: +44 0151 794 5606; e-mail:

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Palliative care has as its main focus on the holistic care of a patient including their psychological, social and spiritual well being, and a great deal of research has focussed on the psychological aspects of having a life-limiting cancer illness, particularly in the assessment and management of anxiety and depression. However, the focus has been almost exclusively on the patient with a life-limiting cancer diagnosis who develops depression and anxiety as sequelae of their cancer diagnosis and life-limiting illness as opposed to patients with preexisting mental health problems who subsequently develop a cancer diagnosis. It is known that people with a preexisting mental illness have worse physical health and are also more likely to have worse outcomes if they develop cancer [1] – the reasons for this include lack of access to routine healthcare services and screening, therefore later presentation; less healthy life styles including less exercise, and increased smoking and alcohol consumption; and access to poor diet and possible lack of ability to comply with acute cancer treatments leading to worse outcomes.

A report published by the Mental Health Foundation in 2008 [2] stated ‘It is surprising that a population with such a high incidence of physical illness and terminal diagnoses has been almost entirely overlooked in regards to their end-of-life care’.

An article published in the UK nearly 20 years ago, 1996, made a case for patients dying with dementia to access palliative care [3] – the UK hospice model of care has until very recently focussed exclusively on patients dying of cancer; however, in the USA, a decade earlier, articles were being published researching the palliative/hospice approach to end-of-life care in people with dementia [4].

In the UK, it is still very rare for a patient with dementia to die within a hospice setting – in 2010, only 44 deaths occurred within a hospice of a total of 25 106 patients dying with a stated diagnosis of dementia [5]. These figures must, however, be treated with caution, as they only record deaths wherein dementia is stated on the death certificate and it is not known how many people may be admitted to a hospice with dementia and another diagnosis, and dementia not recorded as a cause of death. As the population ages, dementia is fast becoming recognized as a global problem and indeed the role of palliative care and hospice care will have to change dramatically within the next 5–10 years in order to accommodate the increasing numbers of older people requiring end of life and supportive care and dying of co-morbidities, which will not infrequently include dementia [6] and there is an urgent requirement for UK hospice and palliative care services to engage more closely with other agencies within their communities in order to deliver more effective care for all those who will require palliative and supportive care.

For this review, we have specifically reviewed articles published since January 2013, which have focussed on patients with preexisting mental illness who require supportive and palliative care and similarly have reviewed the literature since January 2013 on the palliative and supportive care of patients with dementia

Box 1

Box 1

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Despite extensive searchers for databases and journals, it is remarkable that few articles appear to have been published within the time frame regarding supportive and palliative care for people with preexisting mental illness.

Irwin et al.[7▪] review the care of patients with a schizophrenic illness who develop cancer and conclude that patients with schizophrenia are more likely to die of their cancer and have less access to palliative care and illustrate how an integrated approach can deliver high quality care for patients with cancer and schizophrenia.

An extended case history [8] in which a patient with a chronic schizoaffective disorder presents with a very advanced basal cell carcinoma illustrates the complexities of management including palliative care and how a multidisciplinary team approach is essential if a good outcome is to be achieved and the integration of palliative and supportive care is crucial.

A review published in 2013 from the UK [9▪▪] explored the integration of mental health and cancer care and found that the intersection receives little research attention and that more than 80% of the very small numbers of articles published were concerned with effects of cancer on mental health rather than patients with mental health issues who developed a cancer diagnosis and highlighted this as an urgent area for research.

Bloomer et al.[10▪▪] present a case in which a person with co-morbid mental illness requiring palliative care requires the joint expertise of psychiatry and palliative care in order to obtain optimum end-of-life care and in which collaborative interprofessional partnerships between palliative care, psychiatry and patient and family carers were essential.

It is notable that all of the above articles are either case reviews or reviews of the current literature with no articles reporting on interventions or policies to improve the care of patients with co-existing mental health problems who develop cancer. It must be recognized that palliative and supportive care extends beyond cancer care; however, there were no articles within the time frame to consider issues of patients with co-existing mental health problems that develop other illnesses requiring palliative care, for example heart disease, chronic obstructive pulmonary disease or renal disease. The articles include authors from USA, Australia and UK and it appears that issue of appropriate integrated palliative and supportive care for patients with co-existing mental illness and who then develop a life-limiting physical disease is an international issue requiring attention.

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The number of articles and reports relating to dementia and palliative and supportive care appears to be increasing, which is in-keeping with the wide media and international interest that is being given to dementia and the acknowledgement that an ageing population means that dementia is increasing and is a global issue. Many more articles regarding dementia and palliative and supportive care have been identified in the time frame for this review, that is, from January 2013.

A UK model of how hospices can help support carers and professionals in identifying end-of-life needs of patients with dementia was recently published [11] – the paper describes a lack of support from health services; concerns regarding reduced food and fluid intake; undetected or untreated pain; and unnecessary and distressing hospital admissions and report how a specialist hospice-based dementia team can help the end-of-life care for people with dementia and their families.

Harris et al. from the USA [12▪] explored the pattern of decline within a hospice setting and included over 8000 patients from within three hospice services and used the Palliative Performance Status to measure decline – they concluded that patients with cancer had the most rapid decline and patients with dementia had the slowest pattern of decline. They concluded that of the 22% of patients who had a PPS score recorded in the last day of life, one-third had a PPS score of at least 40 suggesting some oral intake, variable mental status, some limited self-care, and retained an ability to get out of bed for at least part of the day.

The European Association for Palliative Care recently commissioned a white paper to define the optimal palliative care in older people with dementia by utilizing a Delphi study [13]. Sixty-four experts from 23 countries were involved in the Delphi exercise and consensus was reached on eight domains including patient-centred care, optimal treatment of symptoms and providing comfort, and following revision full consensus was also reached for prognostication and timely recognition of dying. This pan European Study suggests there is a full consensus on how care should/can be delivered to people with dementia; however, the main issue is actually developing models, which enable the delivery of the care.

Many people with dementia die in care homes – in the UK in 2010 [5], 63% of patients were identified as dying within a care home and having dementia listed as a cause of death on the death certificate. It is important to acknowledge that for many people with dementia, entry to a care home usually follows a hospital admission and people with dementia may reside in a care home for some time before their death. Therefore, the care home is their ‘real home’. It can be difficult to ascertain the end-of-life wishes of a person with dementia at the very end of life because of difficulties with cognition and speech and Advance Care Planning (ACP) wherein a person with dementia and their carer can openly discuss their wishes for end-of-life care prior to the person with dementia loosing the ability to do so, has been advocated as a means of ensuring a person's wishes are known and where at all possible are adhered to within end of life care. ACP, although available, is relatively infrequently utilized and a study by Robinson et al.[14] aimed to explore what may be the barriers to the effective use of the ACP. Ninety-five participants were interviewed using a mixture of focus groups and individual interviews and although all agreed that the ACP was good in theory, there was confusion over documentation, timing of discussions, the legality of the document and whether patients and carers stated a preference, could this be met in reality – Dempsey [15] also reported similar issues with ACP.

Clearly, the increasing number of research articles suggests that greater attention is being given to palliative and supportive care for people with dementia; however, the importance is that this is translated in to clinical practice and adopted by clinical commissioners. The evidence from review articles published between 2000 and 2011[16] concluded that there appears to be in existence good evidence on the care and management of patients with dementia at the end of life and highlighted the important that this evidence is incorporated into clinical practice.

One of the issues which many clinicians struggle with is prognostic indication within advanced dementia. A systematic review [17▪▪] of identifying accurate prognostic indicators of mortality in people with advanced dementia revealed that the Functional Assessment Staging phase 7c, which currently being used to assess hospice admission eligibility in the USA, is not an unreliable predictor of 6-month mortality and suggested that using accurate prognosticators may improve the availability of palliative care options for patients with dementia patients and their families.

Although many articles review palliative care as being crucial to end of life care in dementia and the importance of palliative care being integrated into clinical commissioning, fiscal issues are clearly important and only one article was found that explored the cost–effectiveness of palliative care interventions for the care of patients with dementia. A study from the USA [18] compared pharmacy costs before and after a palliative care consultation occurred for a patient with end-stage dementia. They reported a significant increase in proportion of patients prescribed analgesia following a palliative care consultation along with a significant reduction in overall daily pharmacy costs after a palliative care consultation because of nonessential medication being discontinued during the hospital admission.

When considering outcomes for palliative care (or in any other setting), patient-reported outcomes are vital; however, in the case of palliative care and dementia, carer-reported outcomes are used as a proxy and the carer's perception of care delivered is vitally important as we consider how palliative care can be effectively delivered for patients with dementia. Crowther et al.[19▪▪] conducted 40 interviews with bereaved carers of people who died of dementia. Ten percent of the deaths had occurred within the family home with remainder within care home or hospital. Excellent examples of care and compassion were described alongside examples of poor care and what was perceived as inhumane treatment. Where death occurred in hospital, carers often reported that the person died in the middle of a busy hospital ward despite the carers asking and in some cases begging for a side room to allow some privacy. It is essential that wherever palliative and supportive care is delivered to the person with dementia, this should be done with kindness and compassion and the needs of both the patient and their families are considered.

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This review has revealed the paucity of articles on the supportive and palliative care needs of people with co-existing and preexisting mental illness who develop terminal illness requiring palliative care. All articles lament the lack of integration within palliative care and psychiatry and how the care of patients requires co-ordinated multidisciplinary care to ensure that patients with preexisting mental health problems who often have a high physical symptom burden because of diagnostic and treatment delays can have access to effective and appropriate palliative care. Lack of the availability of psychiatry support within specialist palliative care units and hospices was reported in a national survey of hospices in 1999 [20], and there is no evidence to suggest that the situation has improved. We urgently require more research into this area and also examples of good practice as to how mental health teams can engage more fully with palliative and supportive care to give very vulnerable patients the support and access to services.

There have been large numbers of articles published on the need of patients with dementia for palliative care. Most articles have been very timely and highly valuable reviews, which support the benefits of palliative care for patients with dementia, the use of ACP and importance of integration of services. What is lacking, however, is the research article reporting how palliative care interventions can be delivered and implemented for patients dying with dementia in whichever setting they are being cared for. The ageing population means we have many older people living (and dying) with multiple comorbidities and not infrequently dementia being one of the comorbidities. In the UK, hospices have until very recently struggled somewhat to extend their care and remit beyond that of cancer, although palliative care with its emphasis on a holistic approach and attention to detail and individualized care is applicable to patients dying of any chronic condition – unless patients carried the cancer label, it was almost impossible to receive hospice and palliative care in the UK. The USA, however, has a much broader definition of hospice and patients with dementia were offered hospice care as long as 30 years ago. It is very encouraging to see so much research and so much funding being devoted to the needs of people with dementia; however, we need to be mindful that we do not isolate dementia so much that only patients with a very specific diagnosis of dementia can access services. Do we not in reality require models of palliative and supportive care that are applicable for all people including those dying of multiple co-morbidities, which will be the future landscape in palliative care with an ever-ageing population?

One issue that is striking from all the articles is that dying at home with dementia happens so rarely that it is not considered a possibility. Clearly people with very complex behaviours and care requirements will require specialist residential nursing care, but should we dismiss completely the option for people with dementia to dying at home? Many cite the costs and that the care required is too complex to be delivered, yet as in Crowther et al.'s study [19▪▪], this care can be achieved but often depends on family carers who had to ‘fight’ in order to allow their relative to remain within the family home. Figures by the Health Foundation report [20] that for moderate dementia, costs for care within the community are approximately £25 000, whereas for severe dementia, this increases to approximately £37 000, which compares to care within the residential setting of approximately £32 000 – however, the report states that it is unclear whether the reduced costs within residential care are because of reduced need or in fact difficulty accessing appropriate NHS and social care once the person with dementia is no longer residing within their own home. The report also states that cheaper care does not necessarily equate with more cost-effective care. There is a need to explore further how palliative and supportive care for the person with dementia can be delivered within their own home until the end of life and how this includes greater community engagement [21,22].

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We wish to gratefully acknowledge the advice and assistance of Mrs Siobhan Horton, Director of Clinical Services, St Luke's Hospice, Winsford, Cheshire, in the preparation of this paper.

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Conflicts of interest

None of the authors have declared any conflicts of interest.

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Papers of particular interest, published within the annual period of review, have been highlighted as:

  • ▪ of special interest
  • ▪▪ of outstanding interest
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1. Talbott JA, Linn L. Reactions of schizophrenics to life-threatening disease. Psychiatry Q 1978; 50:218–227.
2. Mental Health Foundation (2008) Mental Health and Palliative Care Literature Review. Published: August 2008 ISBN: 1-978-1-906162-19-1.
3. Lloyd-Williams M. An audit of palliative care in dementia. Eur J Cancer Care 1996; 5:53–55.
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7▪. Irwin KE, Henderson DC, Knight HP, Pirl WF. Cancer care for individuals with schizophrenia [review]. Cancer 2014; 120:323–334.

This review reports that inequities of care for patients with schizophrenia who develop cancer exist along a continuum from higher rates of health behaviours linked with cancer mortality; significant medical co morbidity; less access to cancer screening and presenting with later-stage disease but are also less likely to receive chemotherapy and radiotherapy and less access to palliative treatments and palliative and supportive care. Finally, recommendations for research to address the disparities in cancer care for individuals with schizophrenia are discussed. Despite significant challenges, with collaboration between oncology and mental health teams, individuals with schizophrenia can receive high-quality cancer care; the authors conclude that a research is urgently required to explore further issues and solutions to these disparities and inequity of care.

8. Taylor EJ, Golas L, Martel JR, Martel JB. Advanced basal cell carcinoma in a patient with schizoaffective disorder: constraints and management. Ophthal Plast Reconstr Surg 2013; 29:e49–e51.
9▪▪. Purushotham A, Bains S, Lewison G, et al. Cancer and mental health: a clinical and research unmet need. Ann Oncol 2013; 24:2274– no. mdt214.

This is a UK study that explored extents of research in mental health and cancer. Of the 1463 articles dealing with the dual presence of cancer and mental disorder, 80% of articles were concerned with the effects of cancer on mental health rather than the reverse, and the major focus of research was unipolar depression. The authors state that the paucity of research that exists at the interface of cancer and mental health requires the urgent attention of policymakers and funders.

10▪▪. Bloomer M, O’Brien A. Palliative care for the person with a serious mental illness: the need for a partnership approach to care in Australia. Prog Palliat Care 2013; 21:27–31.

This review article highlights the issues affecting patients with co-existing mental illness who require palliative care. The authors report that in Australia the care of such patients may currently be under-recognized. The case reports that excellent interdisciplinary working between palliative care, psychiatry, family carers and the patient is essential in order to provide appropriate high-quality care to this group of patients who are not infrequently disenfranchised and stigmatized.

11. Regan A, Tapley M, Jolley D. Dementia at the end of life: what can hospices do? Eur J Palliat Care 2014; 21:6–10.
12▪. Harris P, Wong E, Farrington S, et al. Patterns of functional decline in hospice: what can individuals and their families expect? J Am Geriatr Soc 2013; 61:413–417.Epub 2013 Jan 24.

This is a review of 8669 deceased patients whose performance was measured via the Palliative Performance Scale (PPS) utilizing an Electronic health record-based retrospective cohort study. This study revealed that dementia had the slowest rate of decline when compared with cancer and patients dying of disease, for example pulmonary and cardiac disease. The article also reported that of the 22% of patients who had a PPS recorded on the last day of life, over one-third had a PPS score of at least 40 supporting that they retained some limited self-care, oral intake and were able to get out of bed for some part of the day

13. van der Steen JT, Radbruch L, Hertogh CM, et al. European Association for Palliative CareWhite paper defining optimal Palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliat Med 2013; 28:197–209.
14. Robinson L, Dickinson C, Bamford C, et al. A qualitative study: professionals’ experiences of advance care planning in dementia and palliative care, ’a good idea in theory but ...’. Palliat Med 2013; 27:401–408.
15. Dempsey D. Advance care planning for people with dementia: benefits and challenges. Int J Palliat Nurs 2013; 19:227–234.
16. Raymond M, Warner A, Davies N, et al. Palliative and end of life care for people with dementia : lessons for clinical commissioners. Prim Health Care Res Dev 2013; 14:1–12.
17▪▪. Araw M, Kozikowski A, Sison C, et al. Does a palliative care consult decrease the cost of caring for hospitalized patients with dementia? Palliat Support Care 2013; 11:1–6.

This is a retrospective study of 60 hospitalized patients with end-stage dementia within a US hospital comparing daily pharmacy costs pre and post a palliative care consultation. Although post palliative care consultation there was a significant increase in costs associated with analgesia, there was a statistically significant reduction in daily pharmacy costs post palliative care consultation.

18. Brown MA, Sampson EL, Jones L, Barron AM. Prognostic indicators of 6-month mortality in elderly people with advanced dementia: A systematic review. Palliat Med 2013; 27:389–400.
19▪▪. Crowther J, Wilson KC, Horton S, Lloyd-Williams M. Compassion in healthcare – lessons from a qualitative study of the end of life care of people with dementia. J R Soc Med 2013; 106:492–497.

This study carried out 40 interviews with bereaved cares living in different parts of the UK. Although most deaths occurred in hospital or nursing home, four deaths occurred within the family home. The article reports on the issues of compassion within end-of-life care for patients with dementia and excellent examples of compassionate care were described alongside care that totally lacked compassion. The authors discuss the crucial role of compassionate care within end-of-life care and how compassion should and must be delivered across all care settings.

20. Lloyd-Williams M, Friedman T, Rudd NA. Survey of psychosocial service provision within hospices. Palliat Med 1999; 13:431–432.
21. Spotlight on Dementia Care – A Health Foundation Improvement Report – Health Foundation UK.( 2011).
22. Crowther J. Dementia End of Life Project. 2013; Dementia UK.

community care; dementia; mental illness; palliative care

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