Health Values and Treatment Goals of Older, Multimorbid Adults Facing Life‐Threatening Illness

Naik, Aanand D.; Martin, Lindsey; Moye, Jennifer; Karel, Michele J.

doi:10.1111/jgs.14027

Cited by 106 publications

(148 citation statements)

References 30 publications

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“…Many of the values and information sources participants named were consistent with findings of prior research in specific settings. For example, the importance to older adults of maintaining control over decisions echoed those from prior studies of veterans with cancer . Furthermore, expression by older adults and surrogates that God decided their fate has previously been observed in older adults from a range of ethnic groups .…”

Section: Discussionmentioning

confidence: 88%

Older Adult and Surrogate Perspectives on Serious, Difficult, and Important Medical Decisions

Petrillo

McMahan

Tang

et al. 2018

J American Geriatrics Society

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OBJECTIVES:To elicit decisions that diverse older adults and surrogates perceive as serious, difficult, or important and explore what helped them make those decisions. DESIGN: Focus groups (N513) in which participants were asked to recall serious, difficult, or important medical decisions and what helped them make those decisions. SETTING: Clinics, support groups and senior centers. PARTICIPANTS: Diverse English-and Spanish-speaking older adults (age: mean 78, range 64-89) and surrogates (age: mean 57, range 33-76) (29% African American, 26% white, 26% Asian or Pacific Islander, 19% Hispanic) (N569). MEASUREMENTS:We used thematic analysis to analyze transcripts. RESULTS: We identified 168 decisions. Older adults from all racial and ethnic groups frequently recalled cancer treatment decisions and decisions about chronic illness management. Surrogates described decisions about transitions in care and medical crises. Older adults valued selfsufficiency and maximizing survival and relied on personal experiences as often as medical advice. In all racial and ethnic groups, surrogates valued avoiding suffering for loved ones. CONCLUSION: Diverse older adults and surrogates perceive life-threatening illness and day-to-day decisions about chronic disease to be serious, difficult, and important. The surrogates' goal of avoiding suffering of older adults may differ from older adults' priorities of selfsufficiency and maximizing survival. Clinicians should support older adults and surrogates in identifying important and difficult decisions and learn about the values and information sources they bring to decision-making. With this knowledge, clinicians can customize decision support and achieve person-centered care. J Am Geriatr Soc 2018.

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Section: Discussionmentioning

confidence: 88%

Older Adult and Surrogate Perspectives on Serious, Difficult, and Important Medical Decisions

Petrillo

McMahan

Tang

et al. 2018

J American Geriatrics Society

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“…I don't want to be sick. Until I'm overwhelmed, I want to be able to deal with it [my illness] on my terms (CA1030) …”

Section: Resultsmentioning

confidence: 99%

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis

Etkind

Bone

Lovell

et al. 2018

J American Geriatrics Society

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ObjectivesTo determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research.DesignSystematic review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were undertaken.SettingHospital and community care settings.ParticipantsOlder adults with advanced illness, including people with specific illnesses and markers of advanced disease, populations identified as in the last year of life, or individuals receiving palliative care (N = 15,164).MeasurementsThe QualSys criteria were used to assess study quality.ResultsOf 12,142 search results, 57 articles were included. Family and care context, illness, and individual factors interact to influence care preferences. Support from and burden on family and loved ones were prominent influences on care preferences. Mechanisms by which preferences are influenced include the process of trading‐off between competing priorities, making choices based on expected outcome, level of engagement, and individual ability to form and express preferences.ConclusionFamily is particularly important as an influence on care preferences, which are influenced by complex interaction of family, individual, and illness factors. To support preferences, clinicians should consider older people with illnesses and their families together as a unit of care.

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“…Even patients with diminished capacity may be able to describe these. Structured “values interviews” may assist clinicians, committees, and surrogates in eliciting such values (Doukas and McCullough 1991; Naik et al 2016; Karel et al 2004). …”

Section: Discussionmentioning

confidence: 99%

Ethical Concerns and Procedural Pathways for Patients Who are Incapacitated and Alone: Implications from a Qualitative Study for Advancing Ethical Practice

et al. 2017

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Adults who are incapacitated and alone, having no surrogates, may be known as “unbefriended.” Decision-making for these particularly vulnerable patients is a common and vexing concern for healthcare providers and hospital ethics committees. When all other avenues for resolving the need for surrogate decision-making fail, patients who are incapacitated and alone may be referred for “public guardianship” or guardianship of last resort. While an appropriate mechanism in theory, these programs are often under-staffed and under-funded, laying the consequences of inadequacies on the healthcare system and the patient him or herself. We describe a qualitative study of professionals spanning clinical, court, and agency settings about the mechanisms for resolving surrogate consent for these patients and problems therein within the state of Massachusetts. Interviews found that all participants encountered adults who are incapacitated and without surrogates. Four approaches for addressing surrogate needs were: (1) work to restore capacity; (2) find previously unknown surrogates; (3) work with agencies to obtain surrogates; and (4) access the guardianship system. The use of guardianship was associated with procedural challenges and ethical concerns including delays in care, short term gains for long term costs, inabilities to meet a patient’s values and preferences, conflicts of interest, and ethical discomfort among interviewees. Findings are discussed in the context of resources to restore capacity, identify previously unknown surrogates, and establish improved surrogate mechanisms for this vulnerable population.

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Health Values and Treatment Goals of Older, Multimorbid Adults Facing Life‐Threatening Illness

Cited by 106 publications

References 30 publications

Older Adult and Surrogate Perspectives on Serious, Difficult, and Important Medical Decisions

Older Adult and Surrogate Perspectives on Serious, Difficult, and Important Medical Decisions

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis

Ethical Concerns and Procedural Pathways for Patients Who are Incapacitated and Alone: Implications from a Qualitative Study for Advancing Ethical Practice

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