“Knowing is Better”: Preferences of Diverse Older Adults for Discussing Prognosis

Ahalt, Cyrus; Walter, Louise C.; Yourman, Lindsey; Eng, Catherine; Pérez‐Stable, Eliseo J.; Smith, Alexander K.

doi:10.1007/s11606-011-1933-0

Cited by 105 publications

(148 citation statements)

References 41 publications

(45 reference statements)

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“…The first meeting is often about sharing information regarding the medical facts, which then unfolds into discussions about options and treatment decisions, usually at subsequent meetings. One should try to adopt a mindset of curiosity and detachment and avoid preset agendas (eg, 92 In these situations, it is important to assess the reasons underlying their concerns, exploring creative solutions such as to supply limited information, designate a proxy, or allow control over how the information is shared.…”

Section: Prepare and Planmentioning

confidence: 99%

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Palliative and End-of-Life Care in Stroke

Holloway¹,

Arnold²,

Creutzfeldt³

et al. 2014

Stroke

236

120

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Background and Purpose-The purpose of this statement is to delineate basic expectations regarding primary palliative care competencies and skills to be considered, learned, and practiced by providers and healthcare services across hospitals and community settings when caring for patients and families with stroke. Methods-Members of the writing group were appointed by the American Heart Association Stroke Council's Scientific Statement Oversight Committee and the American Heart Association's Manuscript Oversight Committee. Members were chosen to reflect the diversity and expertise of professional roles in delivering optimal palliative care. Writing group members were assigned topics relevant to their areas of expertise, reviewed the appropriate literature, and drafted manuscript content and recommendations in accordance with the American Heart Association's framework for defining classes and level of evidence and recommendations. Results-The palliative care needs of patients with serious or life-threatening stroke and their families are enormous: complex decision making, aligning treatment with goals, and symptom control. Primary palliative care should be available to all patients with serious or life-threatening stroke and their families throughout the entire course of illness. To optimally deliver primary palliative care, stroke systems of care and provider teams should (1) promote and practice patient-and family-centered care; (2) effectively estimate prognosis; (3) develop appropriate goals of care; (4) be familiar with the evidence for common stroke decisions with end-of-life implications; (5) assess and effectively manage emerging stroke symptoms; (6) possess experience with palliative treatments at the end of life; (7) assist with care coordination, including referral to a palliative care specialist or hospice if necessary; (8) provide the patient and family the opportunity for personal growth and make bereavement resources available if death is anticipated; and (9) actively participate in continuous quality improvement and research. Conclusions-Addressing the palliative care needs of patients and families throughout the course of illness can complement

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Section: Prepare and Planmentioning

confidence: 99%

“…81,92 This acknowledgement of uncertainty, however, must simultaneously be countered with a commitment to a meaningful engagement and nonabandonment during the course of one's stroke trajectory. First, this means acknowledging the difficult emotions associated with uncertainty.…”

Section: Approaches To Overcome Challenges With Decision Making In Stmentioning

confidence: 99%

Palliative and End-of-Life Care in Stroke

Holloway¹,

Arnold²,

Creutzfeldt³

et al. 2014

Stroke

236

120

View full text Add to dashboard Cite

show abstract

“…6 This moves beyond how to manage one's own discomfort about being wrong, and into how to incorporate and communicate that angst into effective decision-making with patients. Dealing with uncertainty takes confidence, emotional energy, and time.…”

Section: "How Well?"mentioning

confidence: 99%

“…5 Prognosis is central to patient-centered care and a key task in successful shared decisionmaking, but clinicians historically are resistant to discussing prognosis. 6,7 Even when it does occur, patient surveys and the wide variations in end-of-life treatment practices suggest that the process of shared decision-making-and possibly the ability to formulate and communicate a prediction-is inadequate. 8 Guidelines exist for prognosis in general medical practice and palliative care, but none yet exist that are specific to neurology.…”

mentioning

confidence: 99%

“…Most patients and families want to know prognosis, but a sizeable minority (up to 25%) do not. 6 For those patients who do want to know prognosis, most want some control over timing, amount of information, manner, or presentation, and whom they wish to be present during the discussion. For those patients who do not want to know or are ambivalent about knowing prognosis, assess and acknowledge the reasons underlying their concerns.…”

mentioning

confidence: 99%

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Estimating and communicating prognosis in advanced neurologic disease

2013

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Prognosis can no longer be relegated behind diagnosis and therapy in high-quality neurologic care. High-stakes decisions that patients (or their surrogates) make often rest upon perceptions and beliefs about prognosis, many of which are poorly informed. The new science of prognostication-the estimating and communication "what to expect"-is in its infancy and the evidence base to support "best practices" is lacking. We propose a framework for formulating a prediction and communicating "what to expect" with patients, families, and surrogates in the context of common neurologic illnesses. Because neurologic disease affects function as much as survival, we specifically address 2 important prognostic questions: "How long?" and "How well?" We provide a summary of prognostic information and highlight key points when tailoring a prognosis for common neurologic diseases. We discuss the challenges of managing prognostic uncertainty, balancing hope and realism, and ways to effectively engage surrogate decision-makers. We also describe what is known about the nocebo effects and the selffulfilling prophecy when communicating prognoses. There is an urgent need to establish research and educational priorities to build a credible evidence base to support best practices, improve communication skills, and optimize decision-making. Confronting the challenges of prognosis is necessary to fulfill the promise of delivering high-quality, patient-centered care.

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Communication Strategies for Sharing Prognostic Information With Patients

Paladino

Lakin

Sanders

2019

JAMA

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Communicating prognosis, the anticipated course of living with an illness, is a core clinical skill and a foundation of the patient-clinician relationship. Clinicians find such communication challenging. Concerns about professional helplessness when caring for a patient with a disease with a poor prognosis and the desire to avoid difficult patient and personal emotions can lead to an understandable reluctance to share difficult news with patients and families. Clinicians also struggle to find the right words to balance hope with concern when sharing difficult news. 1 While receiving prognostic information is difficult for patients, not receiving prognostic information can create anxiety and may distance patients from their clinicians, who are often aware of the prognosis but do not share it with patients. Delaying or avoiding communication about prognosis also risks patients not having the information they need to make decisions and leads to missed opportunities to set and achieve goals that reflect what matters most to them.Sharing prognosis with patients is about more than expected survival. The experience of serious illness includes multiple dimensions, encompassing anticipated changes to quality of life, functional abilities and activities, the possibility of unpredictable events, and patients' (and families') own hopes, worries, and

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“Knowing is Better”: Preferences of Diverse Older Adults for Discussing Prognosis

Cited by 105 publications

References 41 publications

Palliative and End-of-Life Care in Stroke

Palliative and End-of-Life Care in Stroke

Estimating and communicating prognosis in advanced neurologic disease

Communication Strategies for Sharing Prognostic Information With Patients

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