The limits of shared decision making

Elwyn, Glyn; Price, Amy; Franco, Juan Víctor Ariel; Gulbrandsen, Pål

doi:10.1136/bmjebm-2022-112089

Cited by 33 publications

(27 citation statements)

References 26 publications

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“…This reflects previous research that emphasises the need for decision aids to be accompanied by HCP advice and support during the SDM process 20 and throughout the patient's disease journey 68 . It is also essential that patients' willingness and readiness to participate in SDM are considered when HCPs engage patients in discussions about treatment and care options, as patients' individual needs will vary 69 . Patient decision aids can encourage patients and caregivers to be partners in decision making and support HCP to elicit patients' goals and values 70 .…”

Section: Discussionsupporting

confidence: 65%

Understanding how shared decision‐making approaches and patient aids influence patients with advanced cancer when deciding on palliative treatments and care: A realist review

Edwards

Holland-Hart

Mann

et al. 2023

Health Expectations

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BackgroundPatients with advanced incurable cancer face difficult decisions about palliative treatment options towards their end of life. However, they are often not provided with the appropriate information and support that is needed to make informed decisions. This review aimed to identify contexts and mechanisms associated with communication tools, patient decision‐aids and shared decision‐making (SDM) approaches that influence patient outcomes.MethodsWe used a realist review method to search for published studies of patients (adults > 18) with advanced cancer who were expected to make a decision about palliative treatment and/or supportive care in consultation with healthcare practitioners. We appraised and synthesised literature describing the contexts of (when and how) decision aids and SDM approaches are used, and how these contexts interact with mechanisms (resources and reasoning) which impact patient outcomes. Stakeholders including academics, palliative healthcare professionals (HCPs) and people with lived experience of supporting people with advanced incurable cancer contributed to identifying explanatory accounts. These accounts were documented, analysed and consolidated to contribute to the development of a programme theory.ResultsFrom the 33 included papers, we consolidated findings into 20 explanatory accounts to develop a programme theory that explains key contexts and mechanisms that influence patient and SDM. Contexts include underlying patients' and HCPs' attitudes and approaches. These need to be understood in relation to key mechanisms, including presenting information in multiple formats and providing adequate time and opportunities to prepare for and revisit decisions. Contexts influenced mechanisms which then influence the levels of patient decisional satisfaction, conflict and regret.ConclusionsOur programme theory highlights mechanisms that are important in supporting shared treatment decisions for advanced noncurative cancer. The findings are informative for developing and evaluating interventions to improve understanding and involvement in SDM for patients with advanced incurable cancer.Patient and Public ContributionWe included patient and public involvement (PPI) representatives in four stakeholder meetings. PPI helped to define the scope of the review, identify their unique experiences and perspectives, synthesise their perspectives with our review findings, make decisions about which theories we included in our programme theory and develop recommendations for policy and practice and future research.

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Section: Discussionsupporting

confidence: 65%

Understanding how shared decision‐making approaches and patient aids influence patients with advanced cancer when deciding on palliative treatments and care: A realist review

Edwards

Holland-Hart

Mann

et al. 2023

Health Expectations

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“…For all healthcare, including for people with dementia, 14 whether treatment needs are significant or minimal, shared decision‐making is widely advocated, This approach to decision‐making ensures that patients are informed, active participants in decisions about their care 15,16 . It is suitable in most situations, though not all 17 : some patients do not wish to undertake such deliberation with healthcare professionals 18 and some are unable or less able to do so 10,19 . As dementia progresses, the ability of patients and dentists to engage in collaborative discussions about treatment‐aligned with the principles of shared decision‐making 15 —can be compromised or even impossible 10,17 .…”

Section: Introductionmentioning

confidence: 99%

“…10,19 As dementia progresses, the ability of patients and dentists to engage in collaborative discussions about treatment-aligned with the principles of shared decision-making 15 -can be compromised or even impossible. 10,17 Symptoms of dementia may well progress to a point where patients cannot make specific decisions about their dental care. In such scenarios, decisions are made by a proxy decision maker, as informed by legislation.…”

mentioning

confidence: 99%

Exploring dental treatment decision‐making experiences of people living with dementia and family carers

2023

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IntroductionPeople living with dementia can have complex dental care needs. Dentists and patients should make treatment decisions together, yet some people living with dementia may be unable to make their own decisions about their dental care. Dental treatment decision‐making and patients' experiences of this process have not been comprehensively researched.ObjectiveThis study aimed to explore the dental treatment decision‐making perspectives and experiences of people living with dementia and their family members.MethodsSemi‐structured interviews were undertaken with 8 people living with dementia and 17 family caregivers. A constructivist grounded theory approach was adopted, using a maximum variation sample. Qualitative data collection and analysis occurred concurrently. Data underwent initial open coding followed by more focused coding, supported by reflexive memo writing, which supported data categorisation.ResultsPeople living with dementia reported wanting to be understood as unique individuals with specific needs. All participants described wanting to be actively involved in dental treatment decisions. However, many felt that they were insufficiently involved in treatment decision‐making. This perceived underinvolvement meant that some people living with dementia and family members felt the treatment outcomes they sought were neither discussed nor considered.ConclusionPeople living with dementia and carers had specific expectations of dental care yet felt passive in decision‐making despite their desire to be involved in this process. Dentists should seek to actively establish patients' preferences, regardless of mental capacity and consider these in discussions and decisions about dental treatment.

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“…8 Shared decision-making can be especially complex when long-term opioid therapy is being considered. A recent review by Elwyn and colleagues 9 argued that "limits on SDM will occur when (1) wider interests overrule individual wishes, (2) evidence of benefit is insufficient or absent, (3) lowered decisional capacity is present, and (4) profound existential uncertainty exists." The prescription of long-term opioid therapy poses each of these challenges: (1) prescribers must not consider only how opioids affect their patient but rather how unused opioids enter the overall opioid "ecosystem" that can be a source of abused and diverted opioids; (2) although opioids may produce substantial immediate pain reduction, evidence of significant enduring pain reduction from long-term opioid therapy is lacking; (3) long-term opioid therapy induces a state of opioid dependence that compromises patients' decisional capacity, specifically altering their perception of the value and necessity of the therapy; and (4) although patients with chronic pain are not usually at imminent risk of death, they often can see no possibility of a satisfying life without a significant and immediate reduction in their pain.…”

mentioning

confidence: 99%

Centers for Disease Control and Prevention Guideline for Prescribing Opioids, 2022—Need for Integrating Dosing Benchmarks With Shared Decision-Making

2023

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The limits of shared decision making

Cited by 33 publications

References 26 publications

Understanding how shared decision‐making approaches and patient aids influence patients with advanced cancer when deciding on palliative treatments and care: A realist review

Understanding how shared decision‐making approaches and patient aids influence patients with advanced cancer when deciding on palliative treatments and care: A realist review

Exploring dental treatment decision‐making experiences of people living with dementia and family carers

Centers for Disease Control and Prevention Guideline for Prescribing Opioids, 2022—Need for Integrating Dosing Benchmarks With Shared Decision-Making

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