Lack of coordination identified as barrier to improving end-of-life care in advanced CKD
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Results of a survey administered to nephrology and palliative care clinicians revealed both groups view a lack of coordination as the primary obstacle to integrating effective end-of-life care into chronic kidney disease care.
“Experts in palliative care and nephrology have proposed integrating palliative care into CKD care to improve the experience of patients and caregivers living with advanced CKD,” Maureen Metzger PhD, RN, of the University of Virginia School of Nursing, and colleagues, wrote. “ ... Despite recommendations however, referral rates of patients with advanced CKD to palliative care consultation services, remain low and adverse outcomes such as lower quality of life due to poor symptom management and high rates of intensive medical care at or near the end of life, persist.”
To illuminate challenges to enhanced collaboration between teams (thereby setting the stage for developing interventions that specifically target these barriers), Metzger and colleagues administered an online survey to 95 clinicians working in either palliative care or nephrology. Clinicians included nurses, physicians, social workers, dieticians and chaplains, with the researchers finding response rates varied by profession type.
“Social workers participated at the highest rate, with a response rate of 61.5%, followed by [registered nurses] RNs (52.9%),” they wrote. “Survey participation was lowest among physicians, who had a combined response rate of 30.3%. Looking at both specialty and professional type, the majority of respondents were RNs working in nephrology, which is reflective of the overall sample distribution.”
Perspectives on care
Almost 99% of nephology clinicians reported feeling comfortable caring for patients near the end of life. Most agreed they had adequate preparation to manage common symptoms, though palliative care clinicians reported they were less likely to feel they had adequate training to manage common symptoms related to kidney disease than nephrology clinicians.
Further responses revealed most workers in either field were in favor of providing conservative management as a treatment option, as well as expressing willingness to incorporate advance care planning and discussions on goals into routine care.
Here, the researchers pointed out that actual practice patterns appeared to contradict responses related to knowledge and attitude.
“For instance, respondents acknowledged the importance of advance care planning discussions,” researchers wrote. “They also agreed that palliative care differs from hospice, is appropriate at any stage of CKD, and is associated with positive outcomes, such as improved patient outcomes, more efficient care, reduced referring providers’ workload burden and increased job satisfaction. Furthermore, nephrologists agreed that they have received adequate training in palliative care. Yet, more than half of nephrology clinicians reported that palliative care and nephrology rarely or never collaborate, and when they do, it is nearly always at or near end of life. In fact, clinicians cite assisting with withdrawal of care as the most common reason for palliative care referral.”
Barriers to collaboration and next steps
Regarding barriers to collaboration, 65% of respondents said it was due to fragmentation of patient care (defined as “poor communication and coordination of care among the various teams and providers”); 49% said it was due to a reluctance of patients and families to discuss prognosis, palliative care or hospice; and 39% said it was due to having providers at different locations.
Nephrologists were also significantly less likely than palliative care clinicians to identify reluctance to refer patients to palliative care as a barrier to collaboration; rather, clinicians from nephrology indicated that patient and family reluctance served as a major “impediment” to referral.
As for steps to improve care for patients with advanced CKD, all respondents said it is important to develop interventions that prepare patients and families for treatment-related decision-making and that interventions should also be developed for patients who choose conservative management.
According to Metzger and colleagues, those in leadership positions should consider ways to address barriers at their institutions.
“For example, at some institutions (like ours), palliative care services are primarily ‘housed’ in oncology departments on the main health care campus,” they wrote. “However, many dialysis patients receive dialysis at remote clinics, some as far as 2 or more hours away. The geographic separation certainly poses a challenge. Providing palliative care consultations remotely, using telehealth, is one option that may be beneficial. Similarly, often when patients are hospitalized, nephrologists are in a consulting role rather than an attending role, and therefore, unable to refer patients for palliative care consultations. Examining how current structures of care impede collaboration is warranted.”
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