“Patient-centered—providing care that is respectful of and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”—Institute of Medicine, 2001
Patient-centered care, as defined above, is essential to ensure care aligns with the priorities and values of the patient. This care focus is especially important for older patients with kidney disease. These patients have both symptoms and a need for information that influence how they experience and prepare for their disease course. Many initiate dialysis with a limited understanding of its effects on their survival and quality of life. Strategies to incorporate the patient’s voice into kidney care may better inform the patient experience and decision making.
In this month’s issue of JASN, Laden and colleagues explore the role of advance care planning in guiding treatment decisions for advanced kidney disease.1 In total, 68 patients, care partners, and clinicians participated in an interview study to examine the barriers and facilitators of advance care planning, as part of a multisite study aimed to develop a web-based decision aid, Decision Aid for Renal Therapy. Their results point to a key barrier to advance care planning in kidney care: we are having different conversations about what we want from this process.
The question that clinicians ask for advance care planning is whether to carry out future interventions, and they describe frustration when it fails to be answered. They outline legitimate reasons why advance care planning falls short of achieving this goal. First, such planning is often not done. Second, when it is undertaken, the documents are not easily found. And third, it does not help them with the questions they really want answered, such as decisions about dialysis.
In reality, these clinicians are correct, on the basis of how they define advance care planning. This definition views it as an outcome—the documentation of advance directives and health care power of attorney—rather than a process of helping patients prepare for the future. After thousands of research studies and 80 systematic reviews, the evidence for advance care planning as a way to promote goal-concordant care (for example, whether a treatment was something the patient would have “wanted”) is limited and low quality.2,3 We need to abandon this narrow conversation about advance care planning in exchange for one that meets patient and care partner needs in real time.
This is the conversation described by patients and care partners. They want to know where they are in the disease process and what to expect in the future. This information can help patients feel better prepared and supported along the journey. But often these questions were not addressed, leaving them feeling uncertain about their future and questioning their responsibility to start the conversation.
A better conversation would encourage clinicians to stop worrying about which future interventions to choose, and instead create a two-way dialogue that involves learning about the patient as a person, and incorporating this person-specific information into health decisions over time. This is patient-centered care.
The first task starts with being curious about the patient as a person. This involves exploring priorities of patients in how they want to live and what situations they would be willing to go through to achieve these priorities. Patients vary in terms of terms of what makes life meaningful and the kinds of trade-offs they are willing to make. Clinicians often assume the goal for patients is living longer. Yet many patients value wellbeing and daily life over living longer.4 Learning a patient’s perspective on health priorities is important for two reasons: first, clinicians can use these priorities to better discuss relevant treatment options. Second, the process of learning patient priorities fosters a trusting relationship that will enhance future decision making.
The approach developed by the Patient Priorities Care project, developed for older patients with multimorbidity, is an example of how patient priorities can be incorporated into routine care. With this approach, a patient completes a one-page health priorities template that is communicated to the clinician and incorporated into the clinical visit. A recent cross-sectional study of older patients reported the use of the patient priorities care approach revealed diverse patient goals that were linked to underlying values and health care preferences.5 Knowing these values and preferences can drive patient-focused health care interventions.
The second task is to give meaningful prognostic information, even when uncertainty exists. Currently, prognostic information is either avoided or delayed until it becomes crystal clear what the future holds, often too late. Rather than viewing prognosis as a prediction, we can instead describe what the journey might look like and acknowledge the uncertainty.6 The best-/worst-case framework is an approach that prompts clinicians to tell a story about what the future may bring with different treatment options, on the basis of the best- and worst-case outcomes.
The best-/worst-case framework can be especially helpful in discussing treatment options for advanced kidney disease. For older patients, the dialysis best case is that length of life may be longer, but often comes with certain burdens and loss of independence. The conservative kidney management best case is that length of life may be shorter but the focus would be on quality of life and symptom management. Providing a best-/worst-case story encourages patients to consider how their health priorities align with a given treatment path. The best-/worst-case framework piloted within a nephrology clinic led to improved shared decision-making scores and more decisions against dialysis.7
To improve how we provide patient-centered care, nephrology clinicians must be trained in how to have these serious illness discussions. These critical communication skills can be taught.8 They can also positively affect the patient experience. One study in oncology demonstrated that patients reported greater trust in the oncologists who underwent communication skills training, compared with those who did not.9 National training programs offer communication skills training to clinicians, using adult learning principles and practice with simulated patients.10
This study encourages us to expand how we define advance care planning with respect to its role in preparing patients for their kidney disease course. Instead of focusing on the answer to future decisions, our time is better spent learning how we can address patients’ needs and priorities now. Patients may then feel more prepared and more likely to receive kidney treatments that align with their values, beliefs, and what is most important to them.
ACKNOWLEDGMENTS
The author wishes to acknowledge Dr. Robert Arnold, for his thoughtful feedback on this editorial.
Footnotes
Published online ahead of print. Publication date available at www.jasn.org.
See original article, “Advance Care Planning in Older Adults with CKD: Patient, Care Partner, and Clinician Perspectives,” on pages 1527–1535.
Disclosures
J.O. Schell reports receiving honoraria from UpToDate; and reports having other interests/relationships with Dialysis Clinic, Inc., Palliative Care Advisor, and salary support.
Funding
None.
References
- 1.Ladin K, Neckermann I, D’Arcangelo N, Koch-Weser S, Wong J, Gordan E, et al. : Advance care planning in older adults with chronic kidney disease: Patient, carepartner, and clinician perspectives. J Am Soc Nephrol 32: 1527–1535, 2021 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Jimenez G, Tan WS, Virk AK, Low CK, Car J, Ho AHY: Overview of systematic reviews of advance care planning: Summary of evidence and global lessons. J Pain Symptom Manage 56: 436–459.e25, 2018 [DOI] [PubMed] [Google Scholar]
- 3.Morrison RS: Notes from the editor advance directives/care planning: Clear, simple, and wrong. J Palliat Med 23: 878–879, 2020 [DOI] [PubMed] [Google Scholar]
- 4.Urquhart-Secord R, Craig JC, Hemmelgarn B, Tam-Tham H, Manns B, Howell M, et al. : Patient and caregiver priorities for outcomes in hemodialysis: An international nominal group technique study. Am J Kidney Dis 68: 444–454, 2016 [DOI] [PubMed] [Google Scholar]
- 5.Tinetti ME, Naik AD, Dindo L, Costello DM, Esterson J, Geda M, et al. : Association of patient priorities-aligned decision-making with patient outcomes and ambulatory health care burden among older adults with multiple chronic conditions: A nonrandomized clinical trial. JAMA Intern Med 179: 1688–1697, 2019 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Smith AK, White DB, Arnold RM: Uncertainty: The other side of prognosis. N Engl J Med 368: 2448–2450, 2013 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Zimmermann CJ, Jhagroo RA, Wakeen M, Schueller K, Zelenski A, Tucholka JL, et al. : Opportunities to improve shared decision making in dialysis decisions for older adults with life-limiting kidney disease: A pilot study. J Palliat Med 23: 627–634, 2020 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Schell JO, Cohen RA, Green JA, Rubio D, Childers JW, Claxton R, et al. : NephroTalk: Evaluation of a palliative care communication curriculum for nephrology fellows. J Pain Symptom Manage 56: 767–773.e2, 2018 [DOI] [PubMed] [Google Scholar]
- 9.Tulsky JA, Arnold RM, Alexander SC, Olsen MK, Jeffreys AS, Rodriguez KL, et al. : Enhancing communication between oncologists and patients with a computer-based training program: A randomized trial. Ann Intern Med 155: 593–601, 2011 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.VitalTalk. Available at: https://www.vitaltalk.org/. Accessed April 7, 2021