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 114 publications

(164 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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“…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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“…Moreover, many of these goals are relevant to persons with multiple medical conditions who do not have dementia. 32, 33 …”

Section: Discussionmentioning

confidence: 99%

Patient and caregiver goals for dementia care

et al. 2016

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Purpose Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers. Methods We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care. Results Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia. Conclusions Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.

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

Cited by 114 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

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

Patient and caregiver goals for dementia care

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