More Proof that Medicine is Neglecting EOL Planning.

Yet another study shows that patients are dissatisfied with their end of life care information:

Patients with advanced chronic kidney disease (CKD) often do not receive adequate end-of-life care and are unhappy with the medical decisions made as their conditions worsen, according to a study appearing in an upcoming issue of the Clinical Journal of the American Society Nephrology (CJASN). The findings indicate that end-of-life care should be improved to meet the needs of CKD patients.

Although many CKD patients die prematurely, surprisingly little research has been done to study CKD patients preferences for end-of-life care and how those preferences align with the care they receive. Sara Davison, MD, FRCP(C) (University of Alberta, Canada) surveyed 584 late stage CKD patients as they came to dialysis, transplant, or pre-dialysis clinics in a Canadian, university-based kidney program between January and April 2008.

Patients reported that they would like their kidney care team to help them plan for the future in case they become incompetent to make decisions. If seriously ill, patients indicated interest in receiving help with managing pain and other symptoms and psychosocial and spiritual support. These services were not routinely integrated into their kidney-related care. Patients were often unaware of palliative care options and of the status and progression of their illness. Of the patients studied, 61% regretted starting dialysis, noting that the decision to start the treatment reflected physicians and family members preferences rather than their own personal choice.

While the vast majority of dialysis patients die in hospitals, more patients in this survey wanted to die at home (36.1%) or in a hospice facility (28.8%) than in a hospital (27.4%). Less than 10% of patients reported having discussed end-of-life care issues with their kidney specialists in the past year.