“I Realized It Was Kind of Too Late” Integrating Advance Care Planning into the Care of Patients with Kidney Disease

“There’s no doubt that my wife and I waited too long to have that discussion, and part of that is—my wife is very quiet … we’ve been married for 55 years. So we never really had that discussion. And before I realized, it was kind of too late.” (interview 6, man, health care proxy for patient with cognitive impairment) (1).

“I think that discussion should come before you get to the critical point. At the jump of a dime things could turn, so I think the more prepared you are, the better you could handle things when situations get tough.” (interview 1, family, woman) (1).

Patient and caregiver perspectives on advance care planning

In numerous studies, patients with chronic kidney disease (CKD) and ESRD have indicated that they want to talk about advance care planning (ACP) with their nephrologist and care teams (1, 2). ACP discussions are associated with improved goal-consistent care, including increased likelihood of dying in the patient’s preferred setting, reduced hospitalization, and less aggressive care at the end of life (3, 4). Yet only 6% to 38% of dialysis patients have an advance care plan (5). Even when ACP is documented in the dialysis patient’s medical record, it rarely documents specific patient preferences regarding dialysis. A study of Mayo Clinic dialysis patients found that only one half (49%) of the patients had a documented advance directive in their chart. Of these, only 10.6% of documents specifically mentioned patient preferences regarding dialysis, and less than one half (44.2%) addressed preferences for cardiopulmonary resuscitation (CPR) (6).

If this were merely a matter of getting more people to file paperwork, it might not be alarming. However, the low rates of ACP go hand in hand with evidence that patient preferences are not routinely elicited and followed. Davison (7) found that only 10% of patients reported an end-of-life care conversation with their nephrologist, despite the fact that such conversations were patients’ highest priority in end-of-life planning (8).

Barriers to ACP for CKD and ESRD patients

Leaders in nephrology have advocated for more widespread integration of ACP into care (9), but many barriers have slowed progress. Providers often do not feel this is their job, many do not adequately understand ACP, and there is a lack of integration of multidisciplinary resources that could help (10, 11). Furthermore, many implementation details—such as the best timing, setting, and team—have not been well researched, leaving providers to experiment on their own.

A 2015 editorial on ACP for nephrology patients explicitly called for studies of earlier ACP before choosing dialysis, with particular attention to the concerns of patients choosing supportive care (2). The editorial also called for studies that illuminate implementation, stating “[t]he nephrology community would benefit greatly from well conducted clinical studies of the implementation and effectiveness of advance care planning programs. It is time to stop discussing the need for such clinical processes and to start exploring ways to make it work” (2).

Recent systematic reviews have synthesized current knowledge about ACP (12). Through two decades of research, we have learned that multimodal interventions that treat ACP as an ongoing process involving two-way communication are usually more effective than a narrow focus on forms to be completed. We have also learned that family members often do not know what patients prefer, even when they are the designated decision-maker; that patients and family members prefer earlier communication; that ACP does not have a detrimental effect on distress or anxiety; that certain interventions are effective in improving the match between patient preferences and care received; and that certain interventions are associated with cost-savings, although true cost-effectiveness has not been studied.

ACP resources from the Coalition for Supportive Care of Kidney Patients

To help address the need for ACP tools specific to nephrology settings, the Coalition for Supportive Care of Kidney Patients (CSCKP) has developed two patient brochures: one for patients before a dialysis decision and one for patients already on dialysis. A guide for staff to use in conducting an ACP discussion using motivational interviewing techniques complements the patient brochures.

The CSCKP approach to ACP is to normalize the process by decoupling it from worsening prognosis. The CSCKP suggests that everyone—especially those with a chronic disease—should have an advance care plan that specifies who should be called on to make medical decisions if the patient is unable to make them for herself and gives some guidance as to the principles to follow in making those decisions. The CSCKP advises patients to follow five steps:

1) Choose someone to make health care decisions for you if you get sick and cannot speak for yourself.

2) Think about what kind of health care you would want if you were unlikely to get better. Discuss your wishes with your family and friends.

3) Write your wishes down in a legal form known as an advance directive (sometimes called a living will or a medical power of attorney).

4) Give a copy of your advance directive to your health care agent and your kidney care team. Continue talking to your family about your wishes.

5) Work with your kidney care team to complete a medical order form (usually called POLST, MOLST, or POST; polst.org) to record your wishes.

Ideally, ACP is one part of ongoing discussions that the nephrology team initiates about the issues that arise in serious illness and is integrated into the workflow for the nephrology clinic or dialysis center (13). Table 1 shows common barriers to routine ACP and suggests resources or steps that a practice can take to improve its processes.


The nephrology community recognizes that successfully implementing ACP for CKD and ESRD patients is necessary to provide individualized patient-centered care. Multiple studies are underway to develop best practices for ACP for this patient population.


1. Goff SL, et al. Advance care planning: A qualitative study of dialysis patients and families. Clin J Am Soc Nephrol 2015; 10:390–400.

2. Holley JL, Davison SN. Advance care planning for patients with advanced CKD: A need to move forward. Clin J Am Soc Nephrol 2015; 10:344–346.

3. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: A systematic review. Palliat Med 2014; 28:1000–1025.

4. Luckett T, et al. Advance care planning for adults with CKD: A systematic integrative review. Am J Kidney Dis 2014; 63:761–770.

5. Kurella Tamura M, Goldstein MK, Pérez-Stable EJ. Preferences for dialysis withdrawal and engagement in advance care planning within a diverse sample of dialysis patients. Nephrol Dial Transplant 2010; 25:237–242.

6. Feely MA, et al. Prevalence and contents of advance directives of patients with ESRD receiving dialysis. Clin J Am Soc Nephrol 2016; 11:2204–2209.

7. Davison SN. End-of-life care preferences and needs: Perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol 2010; 5:195–204.

8. Weiner S. End-of-life care discussions: A survey of dialysis patients and professionals. J Nephrol Soc Work 2008; 28:52–60.

9. Combs SA. Working toward more effective advance care planning in patients with ESRD. Clin J Am Soc Nephrol 2016; 11:2107–2109.

10. O’Hare AM, et al. Provider perspectives on advance care planning for patients with kidney disease: Whose job is it anyway? Clin J Am Soc Nephrol 2016; 11:855–866.

11. Culp S, et al. Unmet supportive care needs in U.S. dialysis centers and lack of knowledge of available resources to address them. J Pain Symptom Manage 2016; 51:756–761.

12. Bernacki RE, Block SD. Communication about serious illness care goals: A review and synthesis of best practices. JAMA Intern Med 2014; 174:1994–2003.

13. Mandel EI, Bernacki RE, Block SD. Serious illness conversations in ESRD. Clin J Am Soc Nephrol 2016, in press.

October/November 2017 (Vol. 9, Number 10 & 11)