Advance care planning (ACP) is a process of reflection and discussion involving the patient, the patient’s family, and healthcare providers to clarify values, treatment preferences, and the goals of end-of-life care. Recent clinical practice guidelines have highlighted the importance of ACP in chronic kidney disease (CKD). In a recent article published in AJKD, Dr. Tim Luckett and colleagues conducted a systematic integrative review of ACP in CKD. Lead author Dr. Tim Luckett (TL) and corresponding author Dr. Josephine M. Clayton (JMC) discusses this review with Dr. Allison Tong (eAJKD), eAJKD Contributor.
eAJKD: How did you become interested in the area of ACP for adults with CKD, and why do you believe ACP is particularly important in this population?
JMC: As a young clinician working in internal medicine in the 1990s, and since then as a consultant physician in palliative medicine, I have cared for many patients with end-stage kidney disease for whom family members are called upon to make difficult decisions about end-of-life issues on behalf of their loved ones. For example, patients on dialysis for many years who then develop cognitive impairment are no longer competent to make decisions about their care. Family members often seem unaware of the patients’ wishes for care, and it becomes difficult for family members to make decisions in a crisis situation when they are grieving.
ACP is a process that facilitates patients talking with their families and healthcare providers about their wishes for medical care in case their health deteriorates and they can no longer make decisions for themselves. This process may involve the patient writing down their wishes in an advance directive. In other settings, ACP has been shown to increase the likelihood of patients’ wishes for end-of-life care being known and respected, as well as reducing stress for family members. Hence, ACP may also be beneficial for patients with chronic or end-stage kidney disease, easing the decision-making burden for families and allowing the patients wishes for end-of-life care to be respected.
eAJKD: Can you summarize the key findings of your study?
TL: Our systematic review found research on ACP in patients with CKD to be limited, especially regarding interventional studies. Studies mostly measured completion of advance directives, rather than assessing other important outcomes like the quality of ACP discussions and whether patients’ wishes were respected at the end of life.
eAJKD: It is interesting that no study measured compliance with the patient’s preference for end-of-life care. Also, no studies reported outcomes for bereaved family members. What specific outcomes do you think should be measured in family members?
TL/JMC: Health professionals sometimes say they are reluctant to undertake ACP because they worry it will distress families and unfairly burden them with decision-making responsibility. While there is evidence contrary to this in other patient populations, it would be useful to measure family distress, perceived burden, and decision-making conflict specifically in family members of people with CKD, both at the time of ACP and retrospectively following the patient’s death. We hypothesize that while some families may find ACP confronting at first, involvement in the process will lead to greater peace of mind and more confidence in, and satisfaction with, decisions made. While it would require long-term follow-up to measure, we also hypothesize that families may be less likely to experience complicated grief, since they may be more prepared and feel more empowered to help honor their loved one’s wishes for care at the end of their lives.
eAJKD: Can you speculate why there are no studies examining ACP for patients with CKD who are considering or have chosen conservative management?
TL/JMC: The absence of research on ACP for people who have chosen not to go on dialysis may be due partly to practical problems with sampling and recruitment. However, there may also be an element of stigma associated with choosing a non-dialysis or supportive care treatment pathway. The good news is that the Kidney End-of-Life Coalition has set up a website to assist both health professionals and consumers that include information on the full range of treatment options, including choosing not to start or withdrawing from dialysis.
eAJKD: Combining qualitative and quantitative data in mixed methods analysis can be achieved using different approaches that may not be familiar to some readers. Can you briefly explain your approach, and what you believe were the advantages, limitations, and challenges?
TL: In the absence of any ‘gold standard’, we took an approach to synthesizing quantitative and qualitative findings recommended by the Cochrane Handbook for Systematic Reviews. This involves looking at recommendations for practice highlighted by qualitative research, and matching this against interventions and methods from evaluative studies, to assess the degree to which insights from patients/health professional experience have been used to inform research and clinical practice. Advantages of the approach are that it is straightforward to apply and report, and it gives a practical summation of gaps for exploration by future research and practice. These features make this approach appealing to readers with limited time and knowledge of qualitative research. On the down-side, the approach risks over-simplifying findings from qualitative research and their implications for practice, as well as over-generalizing experiences reported by small samples by assuming these should inform service level interventions. From an epistemological perspective, it could be argued that the approach emphasizes qualitative research’s capacity to inform future quantitative research, rather than its value as a source of evidence in itself. This concern is likely to make the approach controversial with some researchers.
eAJKD: What are some of the practical take home messages for clinicians?
TL/JMC: ACP is a process by which families and health professionals understand a patients’ preferences for care in the event that they loose capacity to make decisions for themselves (e.g., after a stroke). In the general medical setting, ACP has been found to ease patient and family worry and ensure that care received is in accordance with patient wishes. This finding has not yet been demonstrated in kidney disease. Research suggests that patients often want to discuss ACP, but wait for their medical team to initiate the discussion rather than raising it first. Hence, there is great importance for clinicians creating opportunities for patients to discuss ACP. There are a variety of online resources to help facilitate ACP discussions, although none yet focus on kidney disease and dialysis, specifically. It is important that any decisions documented in an advance directive are based on a proper understanding of available care options and how these may influence quality as well as length of life.