Table 1.

Summary of studies included in the review

Study AimPopulationMethodResults
Aasen et al. (33), 2012 Location: NorwayExplore how elderly patients with ESRD undergoing hemodialysis, perceive patient participation in decision-making
Patient viewn=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 educationCritical discourse analysis
Data collection:open-ended qualitative interview
Patients recruited from 5 hospitals by nurses2 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: AustraliaTo explore the reasons why some patients choose to stop or not start dialysis and the personal and social effects of this decision
Patient/carer viewn=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 recordedGrounded theory
Data collection: semi-structured interviews
Recruited from 2 tertiary center hospitalsReasons given included: Not to burden others, experience of deteriorating quality of life, prognostic uncertainty, sense of abandonment
Breckenridge, 1997 (38) Location: United StatesTo elicit patient’s perceptions of why, how and by whom their dialysis treatment was chosen
Patient viewn=22
Patients:
Age: Mean, 53.8 yr (29–69)
Sex: 9 women/13 men
Ethnicity: 17 black/5 white
Education level: Not recordedGrounded theory
Data collection:
Semi-structure interviews
Recruited from 4 dialysis units11 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: NorwayExplore the priority dilemmas in dialysis treatment and care offered to elderly patients
Health professional viewn=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 patientsDilemmas 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 StatesTo 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 viewn=18 renal health professionals, 43 dialysis patients
Patients and health professionals:
Age: 70–93 yr 
Sex: Not reported
Ethnicity: Diverse
Education level: Not reportedEthnography
Data collection: Interviews and observation in dialysis clinics
Recruited from clinics using snowball sampling; part of a larger studyNeither 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 StatesTo explore the experiences of adults with potentially life-threatening conditions in their decisions regarding treatment options; included cardiac, cancer and renal conditions
Patient viewn=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 recordedGrounded theory
Data collection: Interviews
Recruited from large urban teaching hospital, outpatient dialysis center, family practicePatients 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 NetherlandsIdentification 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 interactionn=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 reportedMethodologic approach not described
Data collection: observation physician and patient interaction while discussing dialysis therapy
Recruited from outpatient clinic; part of a larger studyChoice 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: TaiwanTo describe the experiences of making a decision about hemodialysis among a group of Taiwanese with ESRD
Patient viewn=12
Patients: 
Age: Mean, 38.9 yr; range 28–53
Sex: 6 women/6 men 
Ethnicity: Taiwanese
Education level: Educated to high school levelColaizzi's phenomenological method
Data collection: Semi-structured interviews
Recruited from dialysis centersThree 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 KingdomTo understand the decision to not embark on dialysis
Patient/carer viewn=30 patients and 17 caregivers
Patients and caregivers:
Age: Not reported
Sex: Not reported
Ethnicity: Not reported
Education level: Not reportedConstant comparative
Data collection: Observation of naturally occurring consultations
Recruited from
clinic; part of a larger studySeventeen 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 StatesTo explore the value of an extended old age made possible by dialysis
Patients/health professional viewn= 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 reportedGrounded theory
Data collection: Interviews and observations of consultations
Recruited from 2 dialysis unitsMost 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 StatesTo describe how nephrologists and older patients discuss and understand the prognosis and course of kidney disease leading to renal replacement therapy
Patients/health professional viewn=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 reportedMethodologic approach s not described
Data collection:
Focus groups and interviews
Recruited from academic and community nephrology unitsSix 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 KingdomTo assess the decision-making process by predialysis patients
Patient viewn=9
Patients: 
Age: Mean, 54 yr (range, 29–69 yr)
Sex: 4 women/5 men
Ethnicity: Not reported
Education level: Not reportedInterpretative phenomenologicanalysis
Data collection:Semi-structured interviews
Recruited from predialysis clinicFour 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.