Enabling Patient Choice: The “Deciding Not to Decide” Option for Older Adults Facing Dialysis Decisions

Saeed, Fahad; Moss, Alvin H.; Duberstein, Paul R.; Fiscella, Kevin

doi:10.1681/asn.2021081143

Cited by 11 publications

(6 citation statements)

References 10 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…33 Whereas patients may defer a decision for reasons, including lack of medical and experiential knowledge or perceived contextual barriers (eg, too little time to decide), most want to be involved in the deliberative processes leading up to the decision. [34][35][36] As "deciding not to decide" about VA would nearly always lead to central venous catheter placement as the most accessible and least invasive option, 14,37 our findings underscore how reviewing the implications of VA options and patients' preferences can engage patients in the decisional process, even for those who choose to defer the decision.…”

Section: Discussionmentioning

confidence: 78%

Alignment Among Patient, Caregiver, and Health Care Provider Perspectives on Hemodialysis Vascular Access Decision-Making: A Qualitative Study

Schneider,

Ravani,

King-Shier

et al. 2023

Can J Kidney Health Dis

View full text Add to dashboard Cite

Background: Updates to the Kidney Disease Outcomes Quality Initiative Clinical Practice Guideline for Vascular Access emphasize the “right access, in the right patient, at the right time, for the right reasons.” Although this implies a collaborative approach, little is known about how patients, their caregivers, and health care providers engage in vascular access (VA) decision-making. Objective: To explore how the perspectives of patients receiving hemodialysis, their caregivers, and hemodialysis care team align and diverge in relation to VA selection. Design: Qualitative descriptive study. Setting: Five outpatient hemodialysis centers in Calgary, Alberta. Participants: Our purposive sample included 19 patients receiving maintenance hemodialysis, 2 caregivers, and 21 health care providers (7 hemodialysis nurses, 6 VA nurses, and 8 nephrologists). Methods: We conducted semi-structured interviews with consenting participants. Using an inductive thematic analysis approach, we coded transcripts in duplicate and characterized themes addressing our research objective. Results: While participants across roles shared some perspectives related to VA decision-making, we identified areas where views diverged. Areas of alignment included (1) optimizing patient preparedness—acknowledging decisional readiness and timing, and (2) value placed on trusting relationships with the kidney care team—respecting decisional autonomy with guidance. Perspectives diverged in the following aspects: (1) differing VA priorities and preferences—patients’ emphasis on minimizing disruptions to normalcy contrasted with providers’ preferences for fistulas and optimizing biomedical parameters of dialysis; (2) influence of personal and peer experience—patients preferred pragmatic, experiential knowledge, whereas providers emphasized informational credibility; and (3) endpoints for VA review—reassessment of VA decisions was prompted by access dissatisfaction for patients and a medical imperative to achieve a functioning access for health care providers. Limitations: Participation was limited to individuals comfortable communicating in English and from urban, in-center hemodialysis units. Few informal caregivers of people receiving hemodialysis and younger patients participated in this study. Conclusions: Although patients, caregivers, and healthcare providers share perspectives on important aspects of VA decisions, conflicting priorities and preferences may impact the decisional outcome. Findings highlight opportunities to bridge knowledge and readiness gaps and integrate shared decision-making in the VA selection process.

show abstract

Section: Discussionmentioning

confidence: 78%

Alignment Among Patient, Caregiver, and Health Care Provider Perspectives on Hemodialysis Vascular Access Decision-Making: A Qualitative Study

Schneider,

Ravani,

King-Shier

et al. 2023

Can J Kidney Health Dis

View full text Add to dashboard Cite

show abstract

“…It is also important to emphasize that decisions regarding dialysis or CKM may not be irreversible, and patients have the right to change their decisions or to ‘decide not to decide’, and defer decision-making until an emergency arises. Thus, it is crucial to prevent future decisional regrets and conflicts [ 108 ].…”

Section: Why Sdm Should Be the Preferred Management Approachmentioning

confidence: 99%

Shared decision making in elderly patients with kidney failure

Kanbay,

Basile,

Battaglia

et al. 2023

Nephrology Dialysis Transplantation

View full text Add to dashboard Cite

‘Elderly’ is most commonly defined as an individual aged 65 years or older. However, this definition fails to account for the differences in genetics, lifestyle and overall health that contribute to significant heterogeneity among the elderly beyond chronological age. As the world population continues to age, the prevalence of chronic diseases, including chronic kidney disease (CKD), is increasing and CKD frequently progresses to kidney failure. Moreover, frailty represents a multidimensional clinical entity highly prevalent in this population, which needs to be adequately assessed to inform and support medical decisions. Selecting the optimal treatment pathway for the elderly and frail kidney failure population, be it hemodialysis, peritoneal dialysis, or conservative kidney management is complex, because of the presence of comorbidities associated with low survival rates and impaired quality of life. Management of these patients should involve a multidisciplinary approach including doctors from various specialties, nurses, psychologists, dieticians, and physiotherapists. Studies are mostly retrospective and observational, lacking adjustment for confounders or address selection and indication biases, making it difficult to use these data to guide treatment decisions. Throughout this review we discuss the difficulty of making a one-size-fits-all recommendation for the clinical needs of older patients with kidney failure. We advocate that a research agenda for optimization of the critical issues we present in this review be implemented. We recommend prospective studies that address these issues, and systematic reviews incorporating the complementary evidence of both observational and interventional studies. Furthermore, we strongly support a shared decision making process matching evidence with patient preferences to ensure that individualized choices are made regarding dialysis vs. conservative kidney management, dialysis modality, and optimal vascular access.

show abstract

“…Decisions about treatment for kidney failure are often formed over years. Patients may delay dialysis initiation as an act of self-efficacy [ 32 ], ‘decide not to decide’ [ 33 ] or postpone the decision [ 34 ]—living life day by day. This makes it difficult to choose a time point at which to audit SDM in this context [ 18 ].…”

Section: Where Are We Now?mentioning

confidence: 99%

Shared decision making: a personal view from two kidney doctors and a patient

Hole,

Scanlon,

Tomson

2023

Clinical Kidney Journal

View full text Add to dashboard Cite

Shared decision making (SDM) combines the clinician's expertise in the treatment of disease with the patient's expertise in their lived experience and what is important to them. All decisions made in the care of patients with kidney disease can potentially be explored through SDM. Adoption of SDM in routine kidney care faces numerous institutional and practical barriers. Patients with chronic disease who have become accustomed to paternalistic care may need support to engage in SDM—even though most patients actively want more involvement in decisions about their care. Nephrologists often underestimate the risks and overestimate the benefits of investigations and treatments and often default to recommending burdensome treatments rather than discussing prognosis openly. Guideline bodies continue to issue recommendations written for healthcare professionals without providing patient decision aids. To mitigate health inequalities, care needs to be taken to provide SDM to all patients, not just the highly health-literate patients least likely to need additional support in decision making. Kidney doctors spend much of their time in the consulting room, and it is unjustifiable that so little attention is paid to the teaching, audit and maintenance of consultation skills. Writing letters to the patient to summarise the consultation rather than sending them a copy of a letter between health professionals sets the tone for a consultation in which the patient is an active partner. Adoption of SDM will require nephrologists to relinquish long-established paternalistic models of care and restructure care around the values and preferences of patients.

show abstract

Enabling Patient Choice: The “Deciding Not to Decide” Option for Older Adults Facing Dialysis Decisions

Cited by 11 publications

References 10 publications

Alignment Among Patient, Caregiver, and Health Care Provider Perspectives on Hemodialysis Vascular Access Decision-Making: A Qualitative Study

Alignment Among Patient, Caregiver, and Health Care Provider Perspectives on Hemodialysis Vascular Access Decision-Making: A Qualitative Study

Shared decision making in elderly patients with kidney failure

Shared decision making: a personal view from two kidney doctors and a patient

Contact Info

Product

Resources

About