Nurse-led advance care planning with older people who have end-stage kidney disease: feasibility of a deferred entry randomised controlled trial incorporating an economic evaluation and mixed methods process evaluation (ACReDiT)

Abstract

Background Advance Care Planning is recommended for people with end-stage kidney disease but evidence is limited. Robust clinical trials are needed to investigate the impact of advance care planning in this population. There is little available data on cost-effectiveness to guide decision makers in allocating resources for advance care planning. Therefore we sought to determine the feasibility of a randomised controlled trial and to test methods for assessing cost-effectiveness. Methods A deferred entry, randomised controlled feasibility trial, incorporating economic and process evaluations, with people with end-stage kidney disease, aged 65 years or older, receiving haemodialysis, in two renal haemodialysis units in Northern Ireland, UK. A nurse facilitator helped the patient make an advance care plan identifying: a surrogate decision-maker; what the participant would like to happen in the future; any advance decision to refuse treatment; preferred place of care at end-of-life. Results Recruitment lasted 189 days; intervention and data collection 443 days. Of the 67 patients invited to participate 30 (45%) declined and 36 were randomised to immediate or deferred advance care plan groups. Twenty-two (61%) made an advance care plan and completed data collection at 12 weeks; 17 (47.2%) were able to identify a surrogate willing to be named in the advance care plan document. The intervention was well-received and encouraged end-of-life conversations, but did not succeed in helping patients to fully clarify their values or consider specific treatment choices. There was no significant difference in health system costs between the immediate and deferred groups. Conclusions A trial of advance care planning with participants receiving haemodialysis is feasible and acceptable to patients, but challenging. A full trial would require a pool of potential participants five times larger than the number required to complete data collection at 3 months. Widening eligibility criteria to include younger (under 65 years of age) and less frail patients, together with special efforts to engage and retain surrogates may improve recruitment and retention. Traditional advance care planning outcomes may need to be supplemented with those that are defined by patients, helping them to participate with clinicians in making medical decisions. Trial registration Registered December 16, 2015. ClinicalTrials.gov Identifier: NCT02631200.

Patients' with chronic kidney disease and their relatives' perspectives on advance care planning: A meta‐ethnography

“…Furthermore, people on dialysis are at risk of intermittent loss of capacity (Davison & Torgunrud, 2007), and for this reason, ACP is important for this group in particular. O'Halloran et al (2020) found that the timing of ACP was a key issue in terms of patients’ capacities related to the stage of disease and end‐of‐life care. Patients most in need of ACP were not able to engage with planning.…”

“…Patients most in need of ACP were not able to engage with planning. Therefore, ACP should be offered earlier in the disease trajectory (O'Halloran et al, 2020). All of this indicates that ACP is useful at all stages of CKD and that the goal of ACP differs at different stages.…”

“…Furthermore, this meta‐ethnography showed that some patients had bad experiences of ACP, compared to their expectations, because they felt that the HCPs did not give them the opportunity to share their preferences for medical care and their life with CKD. Another study showed that the focus among the HCPs and their administration is on documenting the advance care plan and identifying a substitute decision‐maker (O'Halloran et al, 2018). From our study, it became evident that the goal of ACP was more than an administrative task for the patients and their relatives and they had a desire for early introduction of ACP rather than a focus on documentation and loss of capacity at end‐of‐life.…”

“…ACP goals can differ between patients, relatives, and healthcare professionals (HCPs). Studies show that HCPs, in particular, focus on advance care planning documentation and identification of a substitute decision‐maker, whilst the patient and relatives wish to share their values and beliefs and gain confidence to enter into discussions with the HCPs (O'Halloran et al, 2018). Most of the previous studies of ACP in CKD have focused on late‐stage CKD, and ACP as a part of end‐of‐life decisions and dying (Pellegrino & Schmidt, 2011; Song et al, 2015).…”

Nursing Countermeasures of Continuous Renal Replacement Treatment in End-Stage Renal Disease with Refractory Hypotension in the Context of Smart Health

“…It indicates that the renal function recovery of patients is better under individualized care. Dry body weight, also known as target body weight or ideal body weight, refers to the body weight when the patient has neither water or sodium retention nor dehydration, that is, the body weight when the water metabolism is balanced, that is, the desired body weight at the end of dialysis [32]. In this work, the proportion of water growth during dialysis in the intervention group was greater than that in the control group, the patients with good water control in the 7 Computational and Mathematical Methods in Medicine intervention group were significantly more than those in the control group, and the amount of ultrafiltration after dialysis in the intervention group was also greater than that in the control group.…”