Palliative Care for Hemodialysis Patients?

To physicians, and indeed the general public, the term “palliative care” may conjure up many images. Not all of these are true. Those images may include beliefs that palliative care applies only to patients with malignancy; is devoted only to the care of the dying patient and is not relevant earlier in the trajectory of serious illnesses; removes hope; and focuses purely on symptom management and, accordingly, has a relatively narrow parameter. Physicians, including nephrologists, may be surprised to learn that the opposite of these statements is true: that palliative care is more than terminal care and can be applied from the time of diagnosis of any life-limiting illness, according to need; that the principles and practice of palliative care have, over some time, been applied to nonmalignant illnesses, such a kidney failure; that palliative care has a breadth that covers all aspects of the physical, emotional, and spiritual dimensions of the person experiencing the illness; and that palliative care done well can reduce the patient family’s stress and leave enriched long-lasting memories of their loved ones.

A modern example of the application of palliative care to a nonmalignant setting is kidney supportive care. An emerging alliance between nephrology and palliative care, kidney supportive care applies to all patients with advanced CKD, including those receiving KRT, in itself a life-limiting illness (1), and those being managed conservatively without dialysis. The International Society of Nephrology has formalized this alliance. In a seminal article on integrated kidney care globally, kidney supportive care was given an equal status to all other aspects of nephrology, including KRT (2).

How can this approach improve the lives of patients on dialysis? Although dialysis is a remarkable technology, the lived experience of patients on dialysis may be marked by high symptom burden, reduced quality of life, and regret that dialysis commenced. Older, highly comorbid patients may not thrive on dialysis and be subject to increasingly frequent hospitalizations and interventions. Kidney supportive care has a potential role at each point along the dialysis trajectory from predialysis to death in multiple domains—communication about goals of care, symptom management, advance care planning, and care of the deteriorating and dying patient. In each of these domains, kidney supportive care takes the patients and their families as its center and contributes to a multidimensional approach to patient assessment and management.

Are dialysis units, or indeed nephrologists, really ready to embrace such support? Kurella Tamura et al. (3) in this issue of CJASN attempt to assess the effect of a learning collaborative program on the implementation of several of these domains. The study commences by reference to best practices in palliative care for patients on dialysis judged to be seriously ill (4), including screening for serious illness, a goals of care discussion, and use of a palliative care pathway. The primary outcome of the study was the completion of an advanced care plan (ACP). A secondary outcome was health care utilization, specifically the utilization of palliative hemodialysis, hospice referral, or hemodialysis discontinuation. Ten US hemodialysis centers participated in the pre-post study conducted over 17 months focusing on seriously ill patients on hemodialysis as determined by the treating nephrologist’s response to the “surprise question.” Approximately half the study period coincided with the coronavirus disease 2019 pandemic.

The learning collaborative program was intense and consisted of learning sessions, communication skills training, and implementation support. From the pre- to postimplementation period, the adjusted probability of the completion of advance care planning documentation among seriously ill patients increased by 35%, largely due to a documentation substantial uptake of ACP in two centers who had low baseline ACP, with smaller increases in other centers. There was no difference in mortality or the utilization of palliative hemodialysis, hospice referral, or hemodialysis discontinuation.

Although the aims of this study are admirable and the study was well conducted, the end points focus on only a few of the aspects of the palliative care process, and questions about its generalizability remain. The learning collaborative program was clearly time consuming and required experts to ensure that communication skills were appropriately enhanced. Assessment of serious illness took place on a monthly basis, which was an additional burden upon staff. In the end, some gains were made with increased ACP uptake, an important achievement. However, it would appear that no gains were made in a key element of palliative care in hemodialysis units, namely planning at what point in a patient’s journey dialysis would be withdrawn. This is not a criticism of the study, but rather, the study serves to highlight an area where nephrologists understandably struggle with such discussions and settings of goals of care. Better alignment of nephrologists with a palliative care team can help in this regard.

An ACP in nephrology is a process with several interlocking parts. Each part is critical—the identification of competent patients with a poor prognosis; communication skills of clinicians in traversing a terrain of language, expectation, and perspective; the content of the ACP, including a realistic consideration of under which circumstances it is appropriate for dialysis to be withdrawn; its wide dissemination; and ultimately, the adherence by clinicians with the wishes of the patient. In this study, although the increase in ACP completion is commendable, it is notable that the formulation of goals of care did not change following the intervention. Those goals of care are key to the purpose of ACPs.

How are ACPs best done in nephrology? How does this study sit with the current evidence on the initiation, completion, and ultimately, the efficacy of ACPs? Although limited, the literature reveals low levels of uptake, barriers to completion, and mixed results in efficacy (5). The Renal Physicians Association of America, in their seminal document Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, recommended that ACPs should be completed for all patients on dialysis (6). In the study by Kurella Tamura et al. (3), the authors concentrated on the surprise question—patients with an estimated prognosis of 6–12 months. The surprise question is a guide to prognosis; it is not perfect. It is a pragmatic choice and serves to concentrate both the mind and the time of nephrologists on that cohort of patients most likely to deteriorate acutely or over time in the next year.

Second, who is best to initiate and complete the ACP with the patient? There is no absolute answer to that question. Successfully completed ACPs have been conducted by the nephrologist alone or other members of the kidney team (7,8). At the very least, nephrologists should be prepared to initiate and sign off on the process (9). The third is communication skills. Historically, these have not been formally taught in nephrology training. In the modern era, however, such programs as VitalTalk and NephroTalk have adapted generic communication skills workshops for nephrology clinicians (10). Kurella Tamura et al. (3) are to be commended for including such training in the learning collaborative package provided to the clinicians. The difficulty is the generalizability of this learning collaborative package: the capacity of nephrologists to embark on such intense training in addition to their usual schedule. One solution may be that one or more nephrologists in a dialysis unit take the lead in this area and, rather than taking on this task as individuals, are experts with oversight.

The fourth element is time. This issue is frequently raised as a barrier to ACPs by nephrologists. One solution is for the nephrologist to set aside a specific time for an ACP discussion with both patients and families separate from the busy standard nephrology clinic, yet this imposes another burden on the nephrologist. The fifth element is the content of the ACP itself. At a minimum, an ACP includes the patient’s wishes should he or she become irreversibly ill, including a nomination of a surrogate and a statement about do not resuscitate status and intensive care. Logically, in a dialysis setting, it should also include a statement about the circumstances in which dialysis is withdrawn. It is notable that, in the study by Kurella Tamura et al. (3), no center appears to have adopted a protocol of dialysis withdrawal. This appears to be a lost opportunity or else reflects a hesitancy to discuss dialysis withdrawal. The final elements are procedural: the wide dissemination of ACPs to relevant clinicians and the importance of renewing ACPs every 12 months because patient/surrogate congruence diminishes by then (11).

The study by Kurella Tamura et al. (3) illustrates both the opportunities and the challenges of ACPs in nephrology and points to the challenges of adopting palliative care, in its wholesome sense, into a dialysis unit. Those challenges are not insuperable but require concentration on each element of palliative care, including the ACP process, led by nephrologists who are prepared to realistically inform and guide their patients and families in their future planning and offer integrated palliative care within the dialysis unit. This requires a renewed spirit among nephrologists to recognize serious illness well in advance (as best as can be done); plan ahead with patients and their families; and then, work in an integrated fashion with palliative care teams to ensure that patients’ key medical, psychosocial, and spiritual domains are attended to. It is a tough ask and a lot of work, but it is the right thing to do.

Disclosures

All authors have nothing to disclose.

Funding

None.

Author Contributions

F. Brennan and M.A. Brown wrote the original draft and reviewed and edited the manuscript.