Assessing palliative care content in dementia care guidelines: a systematic review

Assessing Palliative Care Content in Dementia Care Guidelines A Systematic Review Accepted Manuscript Assessing Palliative Care Content in Dementia Care Guidelines A Systematic Review Pamela Durepos,[.]

Pamela Durepos, RN, MSc, Abigail Wickson-Griffiths, RN, PhD, Afeez Abiola Hazzan,

PhD, Sharon Kaasalainen, RN, PhD, Vasilia Vastis, MB, BCh, BAO, Lisa Battistella,

MLIS, Alexandra Papaioannou, MD, FRCPC, FACP

PII: S0885-3924(16)31210-6

DOI: 10.1016/j.jpainsymman.2016.10.368

Reference: JPS 9325

To appear in: Journal of Pain and Symptom Management

Received Date: 4 August 2016

Revised Date: 18 October 2016

Accepted Date: 30 October 2016

Please cite this article as: Durepos P, Wickson-Griffiths A, Hazzan AA, Kaasalainen S, Vastis V,

Battistella L, Papaioannou A, Assessing Palliative Care Content in Dementia Care Guidelines:

A Systematic Review, Journal of Pain and Symptom Management (2017), doi: 10.1016/

j.jpainsymman.2016.10.368.

This is a PDF file of an unedited manuscript that has been accepted for publication As a service to our customers we are providing this early version of the manuscript The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

School of Nursing, McMaster University, Hamilton, Canada; 2Faculty of Nursing, University of Regina, Regina, Canada; 3Summerset Analytics, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canada; 4School of Nursing, McMaster

University, Hamilton, Canada; 5Royal College of Surgeons, Dublin, Ireland; 6Hamilton Health Sciences, Hamilton, Canada; 7Geriatric Education and Research in Aging Sciences (GERAS) Centre at McMaster University and Hamilton Health Sciences / St Peter’s Hospital, Hamilton, Canada

Abbreviated title: Palliative Content in Dementia Guidelines

Key words: palliative care, dementia, Alzheimer’s, guidelines, systematic review

Word count: 4030

Re-Submitted to the Journal of Pain and Symptom Management, October 17, 2016

Please address all correspondence to the first author at:

Families of persons with dementia continue to report unmet needs during end-of-life Strategies

to improve care and quality of life for persons with dementia include development of clinical practice guidelines (CPG) and an integrative palliative approach

A systematic review of databases and grey literature was conducted for recent CPGs

Guidelines meeting inclusion criteria were evaluated using the Appraisal of Guidelines Research and Evaluation II (AGREE-II) instrument Quality CPGs were analyzed through organizational template analysis using illness domains described by the ‘Canadian Hospice Palliative Care Association Model’ The study protocol is registered at PROSPERO (CRD 42015025369)

Results:

Eleven CPGs were selected and analyzed from 3779 citations Nine guidelines demonstrated the maximum level of content regarding physical, psychological and social care Conversely,

spiritual care was either absent (three) or minimal (three) in CPGs Six CPGs did not address loss

or grief and seven CPGs did not address or had minimal content regarding end-of-life (EOL) care

Conclusions:

complicated grief and chronic sorrow Results of this review require attention by CPG

developers and researchers to development of evidence-based recommendations surrounding spiritual care, EOL and grief

Accepted for publication: October 30, 2016

Dementia is a progressive syndrome commonly related to chronic

neurodegenerative, life-limiting diseases such as Alzheimer’s [1] Prevalence is increasing and it is estimated that 46.8 million people are living with dementia worldwide This number will rise to 74.7 million by 2030 and reaching 131.5 million by 2050 [2]

Dementia is characterized by an uncertain journey of cognitive and functional decline distinct from other diseases Physical, psychological and behavioural symptoms increase during the advanced stages of dementia and can negatively influence family and patient experiences during end-of-life (EOL) [3]

Palliative care aims reduce and prevent suffering thereby improving quality of life [4] Although traditionally provided during EOL, persons and families coping with chronic diseases such as dementia can receive comfort and support, smoother transitions between levels of care and improved quality of life from early introduction of palliative care

interventions [3] Dementia is difficult to prognosticate which creates a barrier to the traditional provision and coordination of palliative care services at EOL [1, 3] Dementia is also under-recognized as chronic or terminal illness, which may diminish health care providers decision to provide or promote palliative care interventions [1]

The concept of a palliative approach to care describes an integrative model, which can guide the care of persons at any stage of chronic illness, dispelling the myth that

palliative care is only for EOL [5, 6] A palliative approach to care integrates key elements

of palliative care including: open communication regarding illness prognosis and trajectory; advance care planning; psychosocial and spiritual support; and pain or symptom

Clinical practice guidelines (CPGs) comprise another strategy to improve quality and consistency of care by summarizing and presenting evidence-informed

recommendations for clinicians [7] While consensus is building amongst experts that palliative care is essential for persons with dementia, it is unclear if palliative care content

is integrated in current CPGs for management of dementia Furthermore, while CPGs exclusive to EOL or palliative care offer valuable recommendations for persons with dementia, clinicians may not refer to these guidelines until death is imminent, negating the needs of patients throughout the disease trajectory The objective of this systematic review therefore is to assess and quantify the palliative care content within current international dementia care guidelines to increase awareness within clinicians and identify potential need for revision Limitations in content may identify research priorities for evidence-based interventions

The procedure for this review was informed by the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) standards as well as previous systematic reviews of CPGs [8-10] The protocol for this systematic review is registered on

PROSPERO (CRD 42015025369) An systematic literature search guided by based search strategies was conducted in May 2015 by a master’s prepared librarian for CPGs describing the management of dementia in four databases including: CINAHL, EMBASE, Medline and PsychInfo using comprehensive search terms such as “dementia”

evidenced-or “Alzheimer’s disease” and “practice guideline” evidenced-or “clinical protocol” evidenced-or “consensus development” or “practice guideline” [11] Full search terms are included with the study protocol Inclusion criteria of guidelines consisted of:

1 Treatment/management for: Alzheimer’s disease, Fronto-temporal,

Vascular, or Lewy Body dementia

2 Published or updated, in whole or in part in 2008 or later

3 Multifaceted practice recommendations

4 Affiliation with a professional society, government or non-government

organization, or association

5 Method of systematic development described

Alternatively guidelines were excluded due to following criteria:

1 Treatment/management for: Mild Cognitive impairment, Korsakoff’s,

Human immunodeficiency virus (HIV) dementia, intellectual disability or Creutzeldt-Jakob’s dementia

2 Published prior to 2008 without update

3 Exclusive recommendations regarding one practice or symptom (e.g

behaviours, palliation, pain, diagnosis)

4 Exclusive recommendations for a single discipline (e.g nursing)

5 Guideline was not associated with a professional, national/governmental

organization, society or association

6 Method of recommendation development (including literature review) was

not described

The literature search was limited to articles published in English between 2008 and May 2015 to capture CPGs currently in use Broad management guidelines as opposed to specialized CPGs for topics such as pain, palliative care, or medications were selected for review to permit assessment of palliative care content integrated within general guidelines The majority of organization CPG development manuals cite a time frame of between two and five years for revision [12] For CPGs classified as an update of a previous version, the original guideline was retrieved and included during data extraction

A search of grey literature utilizing the same terms and screening criteria was conducted online using the search engine ‘Google Scholar’ The web pages of local,

national and international organizations associated with neurology or cognitive impairment such as the Alzheimer Society of Canada, European Federation of Neurological Sciences and the American Geriatric Society were scrutinized and organizations contacted via telephone or email for pertinent information regarding guidelines Seven CPG catalogues were searched including: National Guideline Clearinghouse, International Guideline

Network, the Canadian Medical Association InfoBase, Database of Abstracts of Reviews of

A team of five researchers utilized DistillerSR software for article screening [13] Titles and abstracts were screened by two independent reviewers, with relevant articles selected for full text review Disagreements concerning inclusion or exclusion of CPGs were resolved through discussion and referral to a third reviewer following procedures and

criteria outlined in the protocol A PRISMA flowchart demonstrating the search and study process is presented in Figure 1 [14]

Quality Assessment

The quality of CPGs meeting inclusion criteria were assessed using the AGREE-II instrument, which critiques guidelines based on eight domains including: scope and

purpose, stakeholder involvement, rigour of development, clarity of presentation,

applicability, and editorial independence and allows reviewers to impart an overall rating between 0 and 7 [14] Reviewers utilized an online tutorial for training and completed two practice assessments reviewed by the principal investigator to ensure inter-rater agreement and reliability Guidelines achieving 60% or greater in the rigour of development domain and an overall assessment of four or greater by two independent reviewers were selected for data extraction and analysis High Agree II scores in the domain of rigour ensured CPGs had undergone rigorous development with recommendations graded according to quality evidence

Data Extraction and Analysis

framework (i.e Square of Care) guiding palliative care Two reviewers independently coded the text of included CPGs (i.e recommendations or discussion points) and

supporting documents according to the model’s eight domains / issues (disease

management, physical, psychological, social, spiritual, practical, end-of-life, grief/loss) and subcategories, classifying content as present or absent with excerpts as proof Additional coding according to the process of care provision further described in the ‘Square of Care’ (i.e assessment, information sharing, decision-making, care planning, care delivery and confirmation) was beyond the scope of this review Data overlapping between multiple domains was extracted to the single domain perceived as most relevant

Results were compared and disagreements were resolved through discussion The principal author then performed frequency counts of content [6, 15], grading palliative care content within the eight CPG domains as absent (0% subcategories addressed), minimal (< 50% subcategories addressed), moderate (> than 50% subcategories addressed), or

maximum (100% of subcategories addressed) A second author reviewed the analysis to ensure accuracy Master themes were identified across the data

Results

The literature search of databases and grey literature resulted in 2490 articles being screened after duplicates were removed During screening, 1071 were determined not to be CPGs and 1293 were not aimed at dementia The authors found that many CPGs addressed four main diseases associated with dementia within one singular guideline, whereas

in their exclusion After three levels of screening, a total of 15 CPGs were selected for appraisal using the AGREE II instrument Of these, 11 CPGs demonstrated >60% of rigour

in development and were rated as four or greater (out of a possible total score of seven) by two assessors These guidelines were subsequently analyzed (Table 1) [16-36]

Insert Table 1

Overall, high-level results of CPGs lacking palliative care content in specific

domains are summarized in Table 2 CPG organizational template analyses are available as

a supplemental appendix from the author Eleven total CPGs were analyzed with nine CPGs demonstrating maximum content regarding disease management, physical,

psychological or social care, demonstrating the areas of focus within dementia care

guidelines [16, 17-18, 19, 26, 27, 29, 30, 31, 32] Alternatively, six CPGs did not include (i.e absent) or contained minimal content on spiritual care [16, 20-25, 28, 29, 31, 32] and seven CPGs did not include or had minimal content on EOL care [16, 19, 20-25, 28, 29, 30, 31] The least amount of palliative care content was noted regarding loss and grief,

importance of differentiating between delirium and dementia Careful management of a person’s comorbidities, potential influence on symptoms of dementia and overall function was also addressed in all guidelines Inclusion of the person with dementia’s family or informal caregiver during assessment and monitoring of the disease, as well as sensitivity during disclosure of diagnosis was also recommended [20-25]

Physical/Cognitive Function

Assessment and care for physical issues associated with illness focuses on symptom management, maintenance of body system health and cognitive function [6] All CPGs demonstrated maximum content in this area, with recommendations for pharmacologic treatment for dementia comprising a large amount of content [31] Treatment of aggression and agitation with antipsychotics was recommended if persons were at risk of harm due to the behaviours, and if other treatment modalities failed [16] Interventions for symptoms such as wondering were described including the provision of access to safe, large

Non-discussed tube feeding for nutrition and hydration [16, 17-18, 20-25, 26, 27, 29, 30, 31, 32] and four CPGs reported evidence against tube feeding for people with advanced dementia [26, 27, 30, 31]

Social

A person’s social domain includes their cultural values, environment, financial and legal resources, relationships and family support, and also includes activities of advance care planning [6] Nearly all CPGs had maximum content in this area including

recommendations for assessment of family coping, support and referral to cited community resources [16, 19, 20-25, 26, 27, 29, 30, 31, 32] Early initiation of advance care planning is

26, 30, 31] One guideline in particular did describe the specific needs of aboriginal

populations [31] and another described factors to be included in a cultural assessment [26]

Practical

Practical issues affected by illness include activities of daily living, transportation, supportive programs and guidance surrounding transitions into long-term care homes [6] Practical content was moderate to maximum within all guidelines and included functional assessment tools, as well as tips to aid families and persons’ with dementia with activities

of daily life such as the use of diaries [19] Community day programs were also

recommended to decrease social isolation, provide stimulation and relief for family

caregivers [16, 30] Some guidelines discussed the relationship between challenging

behaviours and admittance of persons to long-term care homes [20-25, 29, 30] while one described valuable indicators of a person’s inability to live alone including: falls,

hospitalizations and dehydration [20-25]

Spiritual

Spirituality is individually defined and may include persons’ perception of

existential and transcendental reality, values and meaning linked to experiences, religion or rituals [6] Three CPGs neglected mention of spiritual care altogether [28, 31, 32], while others advised assessment of beliefs [17-18, 19, 27, 29, 30] Guidelines reported evidence

of a positive relationship between quality-of-life, well-being and spiritual practices and

19, 20-25, 28, 29, 30, 31] It was recommended that clinicians discuss with persons and families the limitations of treatment for dementia and need for continual evaluation of perceived functional benefits compared to risks [16, 17-18, 19, 20-25, 30] Treatment scope and duration should also correlate with existing advanced care plans and directives [16, 17-

18, 19, 20-25] Most guidelines discussed the discontinuation of pharmacologic therapy during EOL, although little guidance for specific timing of withdrawal was offered Only one CPG reported that most families perceived treatments or medications as appropriate if duration of effects are six months or longer [30] Multiple CPGs recommended clinicians assess need for palliative care services, particularly during EOL [29, 30, 31] However, criteria or triggers for referral to specialists or hospice was lacking Apart from discussion

of overall advance care planning, only one CPG specifically recommended determining a persons’ preferred place of death [30]

Loss and Grief

The domain of loss and grief may include acute, chronic and anticipatory grief as well as bereavement planning and mourning [6] Six CPGs did not address loss and grief [16, 17-18, 20-25, 26, 28, 32] Only one CPG contained maximum content within this domain describing grief and loss within persons and families from time of dementia

guidelines

Discussion

Palliative care interventions and services can provide essential comforts and ease suffering throughout illness Particularly at the critical stage of EOL, palliative care can decrease symptoms (e.g pain, physical stress, mental stress, and isolation) associated with chronic diseases like dementia, improving quality of life The current review was conducted

to assess and quantify palliative care content integrated within current international

dementia care guidelines With a focus on four dementia types (Alzheimer’s disease, Lewy Body, Vascular, and Fronto-temporal) of dementia, findings from this study are consistent with the literature, which shows significant gaps and poor experiences during EOL,

especially among patients who are less critically ill [37]

Although there was coverage in the CPGs reviewed for most of the domains in the

‘Square of Care’ model, there was less attention to EOL care Areas that were missing included determining preferred place of death, peri-death care or family education on what

to expect as the condition of the person with dementia declines, support for funeral

planning and advice for life closure When someone is dying or near death, clinicians should help family members prepare and cope with the eventual loss of their loved one Lack of discussion or recommendations surrounding these issues is an important limitation within current dementia care guidelines