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

Abstract

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.

Barriers and facilitators for shared decision making in older patients with multiple chronic conditions: a systematic review

“…Ten studies were based in a hospital setting [ 46 – 48 , 50 , 56 , 57 , 60 , 63 , 65 , 68 ], six in a primary care setting [ 43 , 44 , 51 , 55 , 61 , 67 ], four in a community care setting [ 45 , 49 , 58 , 59 , 69 ], one in a long-term care setting [ 41 ], one in a hospice [ 42 ], one in a post-acute residential care setting [ 64 ], one in a rehabilitation setting [ 53 ], and one in a geropsychiatric inpatient unit [ 66 ]. Three studies were based in a combined setting, e.g., hospital and primary care [ 52 , 54 , 62 ].…”

“…Previous experience in dealing with conditions and decision making acts as a facilitator to SDM (PP) [ 41 , 44 , 46 ]. Additionally, having personal values, such as religion, views on survival and suffering, and self-sufficiency facilitates the SDM process (PP/IP) [ 50 ]. For information about the exact numbers of articles reporting facilitators, we refer to Table 2 .…”

“…In addition, supportive informal caregivers ensured that patient preferences were recognized [ 51 ]. Furthermore, personal experiences of family and friends are important in balancing options (PP/IP/HP) [ 50 , 56 ]. Tailored information about conditions, options and outcomes was experienced as a facilitator to SDM (PP/HP) [ 44 , 64 ].…”

“…Neither the quantitative nor the mixed-methods studies carried statistical analysis out regarding the barriers and facilitators, they all reported in a qualitative way on the perceived barriers and facilitators. The 28 studies reported perceived barriers and facilitators from different stakeholder perspectives: nine studies (32%) reported on the patient perspective [41][42][43][44][45][46][47][48][49], three studies (11%) focused on the informal caregiver perspective [57][58][59], eight studies (29%) reported on the health professional perspective, and 7 studies (25%) reported more than one perspective [50][51][52][53][54][55][56]. Decisions were about medical treatment [43,45,47,48,50,60,61,64,67], medication [44,65], goals of care [50,53,62,63,66], daily life and lifestyle [41,50,58,64], hospital admission or discharge [46,57,68] and ethical or end-of-life dilemmas [42,49].…”

Ethical challenges in family caregivers of patients with advanced cancer – a qualitative study

“…In the trajectory of an incurable, progressive disease, patients and their FC are confronted with many difficult decisions influencing further care planning and quality of life, such as decisions about lifeprolonging treatment, medically assisted nutrition and hydration, transitions in care (e.g. seeking emergency care), or the place of care and death [2][3][4][5][6]. In palliative and end-of-life care, many of these decisions necessitate difficult conversations, need to be taken ad hoc, are irreversible, and are of existential meaning for the patient and his or her family.…”