Table 1.
Summary of studies included in the review
| Study | Aim | Population | Method | Results |
|---|---|---|---|---|
| Aasen et al. (33), 2012 Location: Norway | Explore how elderly patients with ESRD undergoing hemodialysis, perceive patient participation in decision-making Patient view | n=188 patients who had had dialysis for 2 mo; of these, 11 were recruited Patients: Ages: 1 patient was 72 yr, 2 were 75–78 yr, 6 were 80–85 yr, and 2 were 90 yr Sex: 4 women/7 men Ethnicity: Not reported Education level: 2 patients had higher level, 3 had lower level, 6 had no education | Critical discourse analysis Data collection:open-ended qualitative interview Patients recruited from 5 hospitals by nurses | 2 discourses identified: (1) The health care team's power and dominance and (2) the patient’s struggle for shared decision making The elderly patient’s right to participate in dialysis treatment did not seem to be well incorporated into the social practices of the unit |
| Ashby et al. (43), 2005 Location: Australia | To explore the reasons why some patients choose to stop or not start dialysis and the personal and social effects of this decision Patient/carer view | n=52; of these, 41 were ineligible Response number, 11, resulting in 16 interviews Patients and carers: Age: mean, 77 yr (range, 57–89 yr) Sex: 9 women/7 men Ethnicity: 3 from non–English-speaking backgrounds Education level: Not recorded | Grounded theory Data collection: semi-structured interviews Recruited from 2 tertiary center hospitals | Reasons given included: Not to burden others, experience of deteriorating quality of life, prognostic uncertainty, sense of abandonment |
| Breckenridge, 1997 (38) Location: United States | To elicit patient’s perceptions of why, how and by whom their dialysis treatment was chosen Patient view | n=22 Patients: Age: Mean, 53.8 yr (29–69) Sex: 9 women/13 men Ethnicity: 17 black/5 white Education level: Not recorded | Grounded theory Data collection: Semi-structure interviews Recruited from 4 dialysis units | 11 themes identified: Self decision; access-rationing decision; significant other decision; to live decision; physiologically dictated decision; expert decision; to be care for decision; independence versus dependence decision; no patient choice in making decision; patient preference/choice; and switching modalities due to patient preference/choice. |
| Halvorsen et al. (34), 2008 Location: Norway | Explore the priority dilemmas in dialysis treatment and care offered to elderly patients Health professional view | n=9 (5 physicians and 4 nurses) Physicians and nurses: Age: Physician range, 48–61 yr; nurse range, 26–55 yr Sex: 7 women/2 men Ethnicity: Not recorded Experience level: Physicians, 17–30 yr; nurses, 4–30 yr | Hermeneutical analysis Data collection: Semi-structured interviews Recruited from part of a larger multisite study on healthcare for elderly patients | Dilemmas concerning withholding and withdrawing treatment Advanced age is rarely an absolute or sole priority criterion Nurses prioritize specialized dialysis care and not comprehensive nursing care; thus, the complex needs for elderly patients are not always met |
| Kaufman et al.(39), 2006 Location: United States | To describe the sociomedical features of treatment that shape provider understanding of the nature of choice and no choice; to illustrate the effects of treatment patterns and provider practices on patients’ perceptions of their options for treatment and for life extension. Patients with cardiac disease and renal transplantation were also studied. Patients/health professional view | n=18 renal health professionals, 43 dialysis patients Patients and health professionals: Age: 70–93 yr Sex: Not reported Ethnicity: Diverse Education level: Not reported | Ethnography Data collection: Interviews and observation in dialysis clinics Recruited from clinics using snowball sampling; part of a larger study | Neither patients nor the health professionals made choices about the start or continuation of life-extending treatment that were uninformed by the following: routine pathways of treatment; pressures of technological imperative; or growing normalization, ease, and safety of treating older patients |
| Kelly-Powell (40), 1997 Location: United States | To explore the experiences of adults with potentially life-threatening conditions in their decisions regarding treatment options; included cardiac, cancer and renal conditions Patient view | n=18 patients recruited, 9 of whom had renal failure Patients: Age: Range, 26–81 yr Sex: 9 women/9 men Ethnicity: 15 white, 2 black, 1 Native American Education level: Not recorded | Grounded theory Data collection: Interviews Recruited from large urban teaching hospital, outpatient dialysis center, family practice | Patients make decisions about treatments based on a broad set of values and beliefs which may have little to do with effectiveness of a treatment and more to do with perceived impact of treatment on personal lives and their families |
| Lelie et al. (35), 2000 Location: The Netherlands | Identification of the general practical rules, norms, and values underlying therapeutic decisions. Focused on what the physician considered to be good usual care Patient/health professional interaction | n=59 interactions observed between 30 patients and 4 nephrology residents and 1 attending physician Age: Not reported Sex: Not reported Ethnicity: Not reported Education level: Not reported | Methodologic approach not described Data collection: observation physician and patient interaction while discussing dialysis therapy Recruited from outpatient clinic; part of a larger study | Choice of therapy was discussed as a choice and was discussed months in advance; patient perceptions were considered important Moral persuasion was allowed No patients were informed that dialysis is more expensive and poses allocation problems When to start treatment is not discussed in a shared manner There was evidence of differing approaches to the young, elderly, and severely ill and patients with multiple comorbidities |
| Lin et al. (44), 2005 Location: Taiwan | To describe the experiences of making a decision about hemodialysis among a group of Taiwanese with ESRD Patient view | n=12 Patients: Age: Mean, 38.9 yr; range 28–53 Sex: 6 women/6 men Ethnicity: Taiwanese Education level: Educated to high school level | Colaizzi's phenomenological method Data collection: Semi-structured interviews Recruited from dialysis centers | Three broad categories were identified: 1. Confronting the dialysis treatment: Fear was thought to be caused by false belief, threat to life, impairment of self concept, fear of physical limitations 2. Seeking further information: Patients sought opinions of family, professional confirmation, and explored alternatives 3. Living with dialysis: Patients discussed worsening symptoms, family support, and cultural beliefs about the cause of their illness |
| Noble et al. (36), 2009 Location: United Kingdom | To understand the decision to not embark on dialysis Patient/carer view | n=30 patients and 17 caregivers Patients and caregivers: Age: Not reported Sex: Not reported Ethnicity: Not reported Education level: Not reported | Constant comparative Data collection: Observation of naturally occurring consultations Recruited from clinic; part of a larger study | Seventeen felt they made an autonomous decision Seven had no option but to refuse because it would have been of no benefit and would have ultimately caused their death Two opted for medical management without dialysis and felt both would result in the same outcome Four thought there was no decision to be made |
| Russ et al. (41), 2007 Location: United States | To explore the value of an extended old age made possible by dialysis Patients/health professional view | n= 21 health professionals (4 physicians, 5 nurses, 5 social workers, 2 dieticians, 2 technicians, 3 administrators), 43 patients, 7 family members Patients: Age: >70 yr Sex: 27 women/16 men Ethnicity: 24 white, 13 black, 5 Asian, 1 Latino Education level: Not reported | Grounded theory Data collection: Interviews and observations of consultations Recruited from 2 dialysis units | Most elderly patients did not want or choose dialysis Neither, however, did they want to die Most grudgingly accept treatment until the burdens were considered to outweigh the benefits, when family and health care professionals initiated discontinuation. There was evidence of some patients discussing withdrawal proactively; however, these were the exception. Most patients question life on dialysis but choose to withdraw from treatment later |
| Schell et al. (42), 2012 Location: United States | To describe how nephrologists and older patients discuss and understand the prognosis and course of kidney disease leading to renal replacement therapy Patients/health professional view | n=11 nephrologists and n=29 patients Patients and health professionals: Age: CKD, 68 yr; HD, 72 yr; nephrologist, 50 yr Sex: CKD, 64% male; HD, 50% male; nephrologist, 90% male Ethnicity: CKD, 55% white; HD, 28% white; nephrologist, 73% white Education level: Not reported | Methodologic approach s not described Data collection: Focus groups and interviews Recruited from academic and community nephrology units | Six themes: 1.Patients are shocked by diagnosis 2. Patients are uncertain about how their disease will progress 3. Patients lack preparation for living with dialysis 4. Nephrologists struggle to explain illness complexity 5. Nephrologists manage a disease over which they have little control 6. Nephrologists tend to avoid discussions of the future Discussions about prognosis are rare Patients focused on the future to help them cope with the present Nephrologists were concerned about upsetting patients |
| Tweed and Ceaser (37), 2005 Location: United Kingdom | To assess the decision-making process by predialysis patients Patient view | n=9 Patients: Age: Mean, 54 yr (range, 29–69 yr) Sex: 4 women/5 men Ethnicity: Not reported Education level: Not reported | Interpretative phenomenologicanalysis Data collection:Semi-structured interviews Recruited from predialysis clinic | Four main themes: 1. Maintaining ones integrity and preserving normality was important 2. Patients felt they were forced to adapt to treatment 3. Individuals received support and information through peers 4. Staff provided support. and the experience of illness shaped beliefs about renal disease and treatment options These themes emerged regardless of the treatment chosen |
HD, hemodialysis.