Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation

Steen, Jenny T. van der; Hertogh, Cees M.P.M.; Graas, Tjomme de; Nakanishi, Miharu; Toscani, Franco; Arcand, Marcel

doi:10.1136/medethics-2012-100903

Cited by 35 publications

(41 citation statements)

References 26 publications

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“…1,2 Implementation in other regions may, therefore, need adjustment according to local culture and practice, for example, regarding sensitivities around treating intake problems and families' needs for information regarding euthanasia. 39,61 In general, dissemination to practitioners should involve those specializing in palliative care who may require specific information about, say, the course of dementia, and those specializing in dementia interested in learning how to apply palliative care principles to their patients. We did not indicate relevance to specific disciplines because many recommendations are relevant to all.…”

Section: Discussionmentioning

confidence: 99%

“…These concerned nutrition and hydration, which have also been identified as particularly culturally sensitive in cross-national comparative work on family guidance in palliative care in dementia. 39 While the guidance in the recommendations was retained, we used the panellists' comments to differentiate and improve the explanatory text. The current 11-domain framework differs from, but the core elements resemble, 'domains' and 'key elements' identified for palliative care more generally in an earlier consensus project (2009).…”

Section: Discussionmentioning

confidence: 99%

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White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

et al. 2013

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Background: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. Aim: To define optimal palliative care in dementia. Methods: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. Results: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. Conclusion:We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

et al. 2013

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“…Furthermore, the end-of-life trajectory of patients with dementia is slower and prolonged for many years compared with a relatively rapid functional decline in cancer. And last, dementia-related intake problems may require complex decisions about (discontinuation of) artificial hydration and feeding tubes (Pasman et al, 2005;van der Steen et al, 2013;van der Steen et al, 2014). Moreover, the nursing home setting has its limitations.…”

Section: Palliative Care Guidelinesmentioning

confidence: 99%

Development of a practice guideline for optimal symptom relief for patients with pneumonia and dementia in nursing homes using a Delphi study

Maaden

Steen

Vet

et al. 2014

Int J Geriat Psychiatry

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“…3 Advanced dementia may be perceived as a terminal condition, 4,5 but because patients can survive for years with this condition, they are often exposed to aggressive and/or inappropriate treatments. 6 Decisions to forgo artificial nutrition and hydration are among the most difficult and controversial ones 7,8 , but even routine clinical decisions can impact the patients' quality of life and/or survival. Examples of such decisions are whether to use restraints for patients who oppose treatments, to sedate an agitated patient, or to prescribe invasive diagnostic tests.…”

Section: Introductionmentioning

confidence: 99%

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

Toscani¹,

Steen²,

Finetti³

et al. 2015

Journal of the American Medical Directors Association

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Objective. To describe and compare the decisions critical for survival or quality of life (CDs) made for patients with advanced dementia in nursing homes (NHs) and home care (HC) services.Design. Prospective cohort study with a follow-up of 6 months.Setting. Lombardy Region (NHs) and Reggio-Emilia and Modena Districts (HC), Italy.Participants. Patients (496 total; 315 in NHs and 181 in HC) with advanced dementia (Functional Assessment Staging Tool score >7) and expected survival >2 weeks.Measurements. At baseline, the patients' demographic data, date of admission and of dementia diagnosis, type of dementia, main co-morbidities, presence of pressure sores, ongoing treatments, and current prescriptions were abstracted from clinical records. At baseline and every 15 days thereafter, information regarding the patients' general condition and CDs (deemed critical by the doctor or team) was collected via interview with the doctor. For each CD, the physician reported the problem that led to the decision, the decision that was eventually made, the purpose of the decision, whether the decision had been discussed with and/or communicated to the family, who made the final decision, whether the decision was maintained after one week, whether it corresponded to what the doctor would have judged appropriate, and the expected survival of the patient (≤15 days).Results. For 267 of the 496 patients (53.8%; 60.3% in NHs and 42.5% at home), 644 CDs were made; for 95 patients, more than one CD was made. The problems that led to a CD were mainly infections (respiratory tract and other infections; 46.6%, 300/644 CDs); nutritional/hydration problems (20.6%; 133 CDs) and the worsening of a pre-existing disease (9.3%; 60 CDs). The most frequent type of decision concerned the prescription of antibiotics (overall 41.1%, 265/644; among NH patients 44.6%, 218/488; among HC patients, 30.2%, 47/156). The decision to hospitalize the patient was more frequently reported for HC than NH patients (25.5% vs. 3.1%). The most frequent purposes of the CDs in both settings were reducing symptoms or suffering (more so in NHs; 81.1 vs. 57.0% in HC) and prolonging survival (NH 27.5%; HC 23.1%; multiple purposes were possible). For 26 decisions (3.8%), the purpose was to ease death or not to prolong life. Conclusions.Decisions critical for the survival or quality of life of patients with advanced dementia were made for approximately half of the patients during a 6-month time frame, and such decisions were made more frequently in NHs than in HC. HC patients were more frequently hospitalized, and a sizeable minority of these patients were treated with the goal of prolonging survival. Italian patients with advanced dementia may benefit from the implementation of 5 palliative care principles, and HC patients may benefit from the implementation of measures to avoid hospitalizing patients near the end of life.

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Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation

Cited by 35 publications

References 26 publications

White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care

Development of a practice guideline for optimal symptom relief for patients with pneumonia and dementia in nursing homes using a Delphi study

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

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