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Experiences of substitute decision makers in making decisions for older persons diagnosed with major neurocognitive disorder at end of life: a qualitative systematic review protocol

Cresp, Sarah J.1,2; Lee, Susan F.1; Moss, Cheryle1

JBI Database of Systematic Reviews and Implementation Reports: July 2017 - Volume 15 - Issue 7 - p 1770–1777
doi: 10.11124/JBISRIR-2016-003252

Review question/objective: The objective of this systematic review is to identify and synthesize the best available qualitative evidence on how substitute decision makers (SDMs) are affected by and experience making decisions at end of life (EOL) for older persons diagnosed with major neurocognitive disorder (major NCD) (dementia). Addressing the objective will provide an understanding of SDMs’ experiences of making decisions for older persons diagnosed with major NCD at EOL, in order to tailor supportive education and interventions and potentially decrease inopportune outcomes.

Specifically, the review questions are as follows:

  • How are SDMs affected by making decisions at EOL for older persons diagnosed with NCD?
  • What are the experiences of SDMs in making decisions at EOL for older persons diagnosed with NCD?

1School of Nursing and Midwifery, Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, Australia

2The Centre for Chronic Disease Management: a Joanna Briggs Institute Centre of Excellence, Clayton, Australia

Correspondence: Sarah J. Cresp,

There is no conflict of interest in this project.

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Health and social services in Australia substantially rely on family and friends for delivering end-of-life care, which possibly means that the main sector of the health workforce is informal caregivers.1 Equitable access to appropriate services and support at end of life (EOL) is a basic human right, which champions the principle of best practice palliative care.2

A systematic review and appraisal of online advanced care directive (ACD) templates in Australia3 revealed a marked variance with compliance against the National Framework for Advanced Care Directives with minimal information to help guide the consumers’ preferences for future care. Incomplete ACDs lead to poor family and caregiver outcomes,4 which in turn increase the healthcare system burden.5 According to an Omnibus Survey,1 revealed 7.5% of palliative caregivers would not provide EOL care again, attributable to emotional stressors, lack of preparation, poor training and support, limited respite, protracted grief, poor physical health and loss of employment.1,5 This highlights the need for future indepth qualitative research studies involving speaking to current and former SDMs to ascertain factors associated with the caregiving role.1 Nurses are at the forefront of delivering end-of-life care, hence they need to comprehensively assess and tailor care to individual patient and family needs6 in a timely manner via strategies to support SDMs.1-3,7

To enhance the experiences of SDMs, it is important to explore the perceived barriers to palliative care services and gain knowledge into planning palliative care support and services,8 ultimately developing resources to improve SDM decision making and ensuring optimal care at EOL for older persons diagnosed with dementia.

Dementia is a burgeoning health problem worldwide. According to the World Health Organization (WHO), approximately 47.5 million people are living with dementia currently, with projections estimated to triple by the year 2050 to 135.5 million people.9 The World Population Prospects report released by the World Population Ageing asserts that globally the population is aging and expected to increase due to consistent low rates of fertility, migration and greater life expectancy.10,11 This is endorsed by WHO, who claim dementia is not a natural progression of aging, but mostly affects older persons, aged 60 years or above.9 A Delphi study conducted by van der Steen et al.12 contend that death caused by dementia increases with age.

The Diagnostic and Statistical Manual of Mental Disorders V have re-named dementia as a neurocognitive disorder (NCD) that is characterized by “… evidence of cognitive decline from a previous level of performance in one or more cognitive domains (complex attention, executive function, learning and memory, language, perceptual-motor or social cognition) that is due to a medical condition or the persisting effects of a substance”.13(p.273) Dementia is a life-limiting disease,12 which induces physical, psychosocial, emotional and spiritual effects on the individual's family, namely, substitute decision makers (SDMs).14-20

Unfortunately, there are several obstacles delineated below which affect the provision of good quality EOL care to people living with dementia.12 The WHO defines palliative care as “… an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.21(para.1) Palliative care approaches assist with preventing aggressive, painful invasive procedures and alleviating physical stress, emotional, spiritual and financial trauma amongst SDMs via the development of an advanced directive.

Cognitive function in dementia usually progressively declines gradually over a period of time,22 which presents the opportunity to develop early dialog and education about formulating an advanced care plan or directive in the early stages of dementia, which in turn aids with obtaining an understanding of the patient's EOL care goals, qualms and wishes.23 Advance directives were sanctioned in 1976 within the United States of America and promoted by the Congress via passing the Patient Self-Determination Act in 1990,24-26 which enables competent persons to express their treatment wishes and instructions about their future medical care and authorize a designated proxy, namely, a durable power of attorney in health care in advance of an event rendering them incompetent to make decisions.24,27 The role of the SDM is to protect and honor the autonomy and wishes of the incapacitated patient via utilizing either or both substituted judgment and best interest principles.28,29 Internationally, the legal standing of the substituted judgment principle varies in other parts of the world, but typically substituted judgment and best interests principles are dually linked to deliver ethical care.25,28,29

A significant proportion of older persons living with NCD do not have a durable power of attorney.11,30 High-quality prospective studies have corroborated approximately 44% of residents diagnosed with NCD lack decision making capacity, and estimated one in 30 nursing home residents do not have a stipulated family member or designated proxy to aid with decision making.11,31 This necessitates medico-legal decision making, such as, physicians, hospital ethics committee and court appointed surrogates to represent the individual. However, inconsistencies and discrepancies are evident amongst these approaches, hence it is imperative for residents to complete an advanced care plan or directive to ensure their wishes are reflected accurately.11

Silveira et al.26 used data from a biennial longitudinal survey of national cohort, corroborating the use and efficacy of advance directives due to a strong correlation between prepared advance directives and receipt of care aligned with the patient's wishes.26,32,33 Test-retest reliability research, as conducted by Carpenter et al.,34 regularly reviewing and updating patients’ advance directives, is imperative to ensure current patients’ wishes and treatment preferences and proxy accuracy are reflected,35 as inter-individual variation in stability and reliability is evident among persons with NCD and SDM knowledge. Accurate formulation of advance directives has proved to be effective with increasing patient's quality of life and decreasing undue distress amongst the patient, family and multidisciplinary team.11,24

Despite well-articulated advanced care plans, complex clinical situations can arise requiring healthcare professionals (HCPs) to demonstrate confidence in educated decision making processes; however, family uncertainty, HCPs’ lack of confidence, fear of death, and inadequate experience and dementia training result in the use of conservative approaches to preserve life by transferring the resident to an emergency department (ED) of a hospital.15,36 Consequently, unnecessary hospitalization can lead to the provision of aggressive, painful invasive interventions in the intensive care unit (ICU), which in turn causes stress, anxiety and dissatisfaction among families and ultimately potential patient death in an unfamiliar hospital environment.14-16,36,37

Therefore, it is crucial to obtain an understanding of SDMs’ experiences of making decisions for older persons diagnosed with NCD at EOL, in order to tailor supportive education and interventions and potentially decrease inopportune outcomes. In addition, a search of the JBI Database of Systematic Reviews and Implementation Reports and Cochrane databases did not reveal any systematic reviews on the perspectives of SDMs and their experiences with decision making for older persons diagnosed with NCD at EOL.

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Inclusion criteria

Types of participants

The current review will consider studies that include the experiences of SDMs in making decisions for older persons diagnosed with NCD (dementia) at EOL, aged 60 years or over, of either gender. Substitute decision makers denote the resident's or patient's next of kin who would be a spouse, relative or close friend. A SDM may also be a person appointed under specific legislation to act as decision maker for a person with reduced competence on health-related matters.

The exclusion criteria comprised four elements, namely, compulsory patients under the Mental Health Act, children aged under 18 years, diagnoses of intellectual disability and acquired brain injury, and, finally, non-English speaking due to unavailability of translators.

For the purpose of this review, the term substitute is often used interchangeably with the words proxy and surrogate.

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Phenomena of interest

The current review will consider studies that investigate the experiences of SDMs in making decisions for older persons diagnosed with NCD.

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Types of contexts

The current review will consider studies involving SDMs of older persons diagnosed with NCD making decisions in the contexts of palliative or hospice care, and hospital environments (ICU, ED, acute medical-surgical ward and sub-acute medical-rehabilitation ward), residential aged care facilities and dementia specific facilities. The context of acute mental health facilities will be excluded.

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Types of studies

The current review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, interpretive descriptive studies and action research.

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Search strategy

The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of CINAHL plus, PubMed, ProQuest Central, Scopus and PsycINFO will be undertaken followed by analysis of the text words contained in the title and abstract and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Third, the reference lists of all identified reports and articles will be searched for additional studies. Studies published in the English language will be considered for inclusion in this review. Search limited to articles that are not more than 10 years from December 2016 will be considered for inclusion in this review.

The databases to be searched include: PubMed and CINAHL Plus.

The search for unpublished studies will include: MedNar, Networked Digital Library of Theses and Dissertations, ProQuest Dissertations and Theses and CareSearch Grey Literature.

Initial keywords to be used will be: advance care planning; dementia; end-of-life care; older person; substitute decision making and experience.

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Assessment of methodological quality

Qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the JBI Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.

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Data extraction

Qualitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives. Authors of this qualitative systematic review protocol are available to be contacted for clarification or missing information via the email notated.

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Data synthesis

Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality and categorizing these findings on the basis of similarity in meaning. These categories will then be subjected to a meta-synthesis to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.

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The current qualitative systematic review protocol will contribute toward a Doctorate of Philosophy degree award for the main author.

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Appendix I: Appraisal instruments

QARI appraisal instrument



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Appendix II: Data extraction instruments

QARI data extraction instrument





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Advance care planning; dementia; end-of-life care; older person; substitute decision making and experience

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