The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies

Abstract

Objective To synthesise the views of patients and carers in decision making regarding treatment for chronic kidney disease, and to determine which factors influence those decisions.Design Systematic review of qualitative studies of decision making and choice for dialysis, transplantation, or palliative care, and thematic synthesis of qualitative studies.Data sources Medline, PsycINFO, CINAHL, Embase, social work abstracts, and digital theses (database inception to week 3 October 2008) to identify literature using qualitative methods (focus groups, interviews, or case studies).Review methods Thematic synthesis involved line by line coding of the findings of the primary studies and development of descriptive and analytical themes.Results 18 studies that reported the experiences of 375 patients and 87 carers were included. 14 studies focused on preferences for dialysis modality, three on transplantation, and one on palliative management. Four major themes were identified as being central to treatment choices: confronting mortality (choosing life or death, being a burden, living in limbo), lack of choice (medical decision, lack of information, constraints on resources), gaining knowledge of options (peer influence, timing of information), and weighing alternatives (maintaining lifestyle, family influences, maintaining the status quo).Conclusions The experiences of other patients greatly influenced the decision making of patients and carers. The problematic timing of information about treatment options and synchronous creation of vascular access seemed to predetermine haemodialysis and inhibit choice of other treatments, including palliative care. A preference to maintain the status quo may explain why patients often remain on their initial therapy.

A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

“…15,29,30 This study provides new insight regarding the context in which many older adults manage their health, engage in health care decision-making, and experience health care demands. Emerging evidence that patients commonly elect to involve family or close friends in routine or difficult treatment decisions 20,[31][32][33] has prompted elaborations of shared decision-making models that explicitly include family. 20,21 These are the first national data to specifically elicit decision-making preferences of older adults that extend beyond their doctor, and we find that a substantial one-third of older adults prefer to share or leave health care decisions to family members and close friends.…”

Dialysis in the Frail Elderly — A Current Ethical Problem, an Impending Ethical Crisis

“…15,18 According to surveys and interviews of patients with ESRD, many do not know their prognosis and do not recall alternatives being offered, 17,19 despite preferring to receive detailed information. 20 Instead, patients recount being "rushed" 21 and pressured 17 into treatment at a time when they are too sick to process information and without a chance to discuss options with loved ones. 21 Many physicians interpret "respect for patient autonomy" as presenting all available treatment options without recommendations and are reluctant to advocate for withholding treatment.…”

“…20 Instead, patients recount being "rushed" 21 and pressured 17 into treatment at a time when they are too sick to process information and without a chance to discuss options with loved ones. 21 Many physicians interpret "respect for patient autonomy" as presenting all available treatment options without recommendations and are reluctant to advocate for withholding treatment. 22 This reluctance can obscure the life limiting reality of ESRD and the trade-offs those treatments present.…”

“…45,48 Many patients' views of their own welfare seem to surround being able to maintain their lifestyle and social interactions more than life extension. 21,49 Patients vary greatly in their personal approach to life, suffering, and death 21 and can have multiple goals of care that influence what beneficence toward them might mean. 50 While these goals should shape how beneficence is applied in the dialysis decision-making process, they rarely do.…”

“…18 Patients also care deeply about their loved ones. 21 The current practice blinds patients and families to high mortality for acutely ill frail elders. 51 Being unprepared for the death of a loved one and having to make treatment decisions for them has been shown to have significant negative emotional consequences.…”