“To raise new questions, new possibilities, to regard old problems from a new angle, requires creative imagination and marks real advance in science.”
Mrs. RS is an 83 year old female with coronary artery disease, congestive heart failure (EF=30%), and chronic kidney disease stage IV-V. She was referred to my kidney palliative care outpatient clinical program named Kidney CARES (Comprehensive Advance kidney disease and End stage kidney disease Support) to manage her kidney disease. She lives on her own and walks with a cane. Unfortunately, she had two recent admissions to the hospital for heart failure. With each admission, her kidney disease has worsened, as has her functional status. Mrs. RS is cognitively intact and willing to take an active role in her care. On her first visit, she reports living with constant arthritic pain and anxiety about her disease burden. She shares with me that maintaining her independence is her current most important life goal. She would never want to use machines to keep her alive.
As a geriatric patient living with both heart and kidney disease, Mrs. RS is a common referral to a nephrologist. The prevalence of cardiovascular disease (CVD) in older patients with CKD is nearly twice that of those without CKD (68.8% versus 34.1%). Additionally, co-diagnosis of CKD and CVD worsens survival prognosis. Clinically, Mrs. RS represents many patients I have seen throughout my seven years of practice as an attending nephrologist. However, now I was meeting Mrs. RS after completing a palliative care fellowship and a shared clinical focus of both specialties.
Palliative care is specialized medical care delivered by an interdisciplinary team, that focuses on quality of life and living well with serious illness. Specific skills of palliative care include physical and emotional symptom management, spiritual support, assistance with shared-decision making, and facilitation of advance care planning. It can be delivered while a patient is pursing curative care. Palliative care has gained importance in current health care policy given the transition to patient-centered care that is called for in the Affordable Care Act.
How can palliative care be integrated into the care of Mrs. RS? This starts with identification of her goals. Mrs. RS would like to live the remainder of her life at home, independent, and symptom free if possible. Although these are relatively simple, the unfortunate reality of current practice is that the goals of patients are often not met in clinical care plans. Rather than a person-centered discussion in the context of their individual prognosis, a CKD stage V patient is commonly faced with disease focused discussions of dialysis initiation, the level of phosphorous and potassium in their diets, and fluid status. For Mrs. RS, best practice calls for a discussion that asks the following questions: What does she understand about her illness? What does she expect in the future? What brings her life joy? How can we support her family throughout her illness? Is dialysis the right choice for her? What is most important to her now that she understands her prognosis? How can we treat her symptoms?
This patient centered approach to care does not detract from disease focused treatment, but rather enhances the existing paradigm. For example, randomized controlled trials for patients with lung cancer have shown that integrated palliative care, delivered alongside standard oncology care and introduced early in the treatment process significantly improves the quality of life of patients, while also extending survival. Unfortunately, we have no comparable data for patients in the U.S. living with kidney disease. There is observational data from the United Kingdom and Australia suggesting that conservative management (non-dialysis) and integrated palliative care can improve quality of life. Importantly, some evidence suggests that for older adults living with heart disease, dialysis initiation does not necessarily lead to a survival advantage. It is time to ask these questions to similar patients living in the US.
To our knowledge, Kidney CARES is the only outpatient interdisciplinary kidney palliative care program in the U.S. It is modeled after a similar care delivery model in Australia. We hope that rigorous study of the implementation and clinical outcomes of our care delivery model can answer questions that directly impact the care of patients similar to Mrs. RS. It is her story that illustrates the value of new approaches to care, one that puts the patients’ goals at the center.
By: Jennifer Scherer, MD
One thought on “The Emerging Field of Palliative Nephrology”
I do not suffer from any heart problems, though I have been on continuous dialysis for 33 years.
This is down to Alport Syndrome with the additional problem of having the Anti-GBM antibody.
As I am now 65, life does not get easier. But I am still active and sound in mind. I realise all too well the limits (cinsiderable) of medical science in solving human suffering.
But, then, ageing and death are really our enemies. Nothing good comes from succumbing to them.
But that really is another story.
Derek Keen (UK)