The Emerging Field of Palliative Nephrology

Jen Schere“To raise new questions, new possibilities, to regard old problems from a new angle, requires creative imagination and marks real advance in science.”

-Albert Einstein

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

Patient-directed Advance Care Planning

dodson%20headshotSeveral weeks ago, the American Geriatrics Society (AGS) held its annual scientific sessions in San Antonio, TX. This meeting attracts geriatricians and other professionals dedicated to caring for older adults. As a geriatric cardiologist I attend AGS regularly, and in recent years I have seen interest from other subspecialists continue to grow.

One of the most interesting abstracts presented at AGS this year was by Dr. Rebecca Sudore (UCSF), who discussed a randomized clinical trial aimed at improving advance care planning (ACP). Essentially, Dr. Sudore and colleagues created an interactive, patient-centered advance care planning website. They then assigned half of participants to review this website, and the other half to receive usual care. After 9 months, documentation of ACP improved significantly in the group assigned to the website. They published these findings concurrently in JAMA Internal Medicine.

One of the true innovations of this study is that they targeted patients without requiring intervention on part of the clinical team or health system. This helped to overcome some of the barriers we face in our busy practices with regards to ACP; we all know it’s important, but are often busy with more acute medical issues and long-term planning is therefore overlooked. I am interested in seeing whether Dr. Sudore’s work can be scaled to other healthcare settings in the coming years.

 

By: John Dodson, MD

Cardiologist Confessions: My Journey to Patient Priorities Care

masoudi-frederick-2011 v2For a cardiologist, my interaction with geriatric medicine occurred relatively early in my career. I was an aspiring academic preparing a career development award. I had the good fortune of being involved in a national project sponsored by the Health Care Financing Administration (HCFA, now the Centers for Medicare and Medicaid Services or CMS) to assess the quality of care for Medicare beneficiaries hospitalized with heart failure called the National Heart Care Project. I had settled on what I thought was an important line of research—the epidemiology and outcomes of older persons with heart failure and preserved systolic function. I felt that I had everything I would need for a compelling application to the NIH—an interesting project, excellent career and scientific mentors, and a coherent research plan.

Fortunately, I took the advice of mentors and peers to contact the program officer at the National Heart Lung and Blood Institute (NHLBI), to which I planned to submit my grant. The NHLBI seemed like a natural fit for a cardiologist. At the time, though, cardiovascular outcomes research did not exist as a field, and the program officer at the NHLBI told me frankly that my application stood little chance because of the topic. I was profoundly disappointed, but should have been grateful for her honesty.  It occurred to me that the National Institute on Aging (NIA) might be interested. When I called the program officer there—Andre Premen was his name—the reception could not have been more enthusiastic. While a physiologist, he exuded interest in the topic and strongly encouraged me to apply. I was funded on the first submission (one for the “better lucky than good” file). Thanks to the NIA, my academic career was launched.

My early research with the Medicare data from the National Heart Care Project impressed upon me the challenges in treating older persons with cardiovascular disease, which typically occurs in conjunction with many other conditions. Our team characterized the marked discrepancy between the “real world” population treated in clinical practice and those enrolled in trials (Am Heart J 2003); the increasingly complex and costly medication regimens for heart failure in older persons (Arch Intern Med 2005); and the prescription of potentially harmful medications in this vulnerable population (JAMA 2003 and Circulation 2005).

In parallel, my clinical experiences were teaching me that the care of older persons with cardiovascular disease wasn’t all about cardiology and that the reductionist approach implicit to treatment guidelines didn’t fit this population. When listening to older people talk about their experiences, it was clear that cardiovascular disease wasn’t always the most important issue; that some patients prioritized quality of life over longevity for its own sake; that social support and potential threats to independence played an increasingly important role. Taking care of older patients with numerous conditions was clearly nuanced and required a willingness to look beyond the constraints of the data generated from the rarified environs of clinical trials.

The cardiovascular profession is acknowledging these lessons more broadly. The American College of Cardiology (ACC) has a robust Geriatric Cardiology Section, which has advocated for an emphasis on the specific challenges in caring for complex older patients throughout the organization. The ACC has also engaged in the development of instruments to support shared decision-making, which while important for all patients, is often even more important in the older population. The ACC, in partnership with the American Heart Association, are also committed to integrating considerations relevant to the older population in its practice guidelines. The confluence of these efforts is likely to transform how cardiologists approach the care of older persons in clinical practice.

I remember when saying “I’m a cardiologist” in the company of geriatricians felt like a 12-step program confession. Fortunately, those days are behind me. I am optimistic that through collaboration between geriatricians and cardiovascular specialists, like the Patients’ Priorities Care Program, will help all of us deliver the right care to the right patient in accordance with their personal values.

 

By: Fred Masoudi, MD

Rethinking Endpoints: The Rise of Function

dodson%20headshotThe American Heart Association recently released a Scientific Statement on prioritizing functional capacity as an end point for treating older adults with cardiovascular disease.  A major rationale is that older patients repeatedly cite preservation of physical function as an outcome that matters most to them; for example in a landmark study by Fried et al. in 2002, survey respondents (older adults with limited life expectancy) reported that nearly three quarters would decline a treatment if the outcome was survival with severe functional impairment.

The AHA Statement highlights some key concepts when considering how to think about functional capacity in our everyday practice. I have highlighted several which I think are especially important:

  1. Function in older adults (and functional decline) is multifactorial. Function is determined not only by cardiovascular health, but by other organ systems including skeletal muscle, bone, lungs, and brain. For example, cognitive impairment may cause significant functional impairment despite normal cardiac output. This underscores why Geriatric Cardiologists aim to “think outside the heart” in addressing older patients’ symptoms.
  2. Trials that move beyond the traditional endpoints of death and/or cardiac events may be particularly relevant to older adults. Not many trials to date have accomplished this; however the authors cite the ASPREE trial (Aspirin in Reducing Events in the Elderly) as a novel example, using a primary end point of disability-free life (dementia and persistent disability).
  3. There are many domains of function, including aerobic, strength, balance, and cognition. Each domain also has multiple ways to measure it. It is simply impractical to measure all domains in everyday clinical practice. But a multi-domain assessment such as the Short Physical Performance Battery (SPPB), which assesses balance, mobility, and gait speed, can be completed in 10-12 minutes. I would expect these assessments to become more commonplace is specific settings, such as preoperative risk evaluation.

Finally, the article also discusses the critical need for interventions to improve or maintain function in older adults. Given the heterogeneity of abilities in older patients, rather than a “one size fits all” approach, these are best tailored towards specific goals (e.g. climbing stairs, household chores). A key role for Geriatric Cardiology will be to evaluate which interventions work best, and figure out how to embed them in everyday clinical practice.

By: John Dodson, MD

When It’s OK to Treat Older Adults Like Children

DharmarajanHospitalization is a difficult experience for many older adults. Sleep is often disturbed due to frequent nighttime interruptions for vital signs checks, medication administrations, and diagnostic procedures. Mobility is compromised due to “one-point restraints” including urinary catheters and intravenous lines. Forced fasting is frequent. And anxiety is common due to unfamiliar surroundings, multiple changes in provider teams, shifting care plans, suboptimal communication with providers, and sick roommates.

By inducing stress and anxiety, these common experiences of hospitalization may contribute to the high levels of vulnerability experienced by older adults after hospital discharge. While data in humans are lacking, previous work with laboratory animals has shown that prolonged exposure in controlled settings to sleep disruptions, immobilization, food restriction, and unfamiliar cagemates results in endocrine dysregulation, anhedonia, impaired immune response, and even vascular thromboses. These effects occur even among young healthy animals. It is highly likely that hospitalized older adults with acute illness, multimorbidity, geriatric conditions, and reduced physiologic reserves are even more susceptible to the exogenous stressors that are common during hospital stays.

So how can we do better? One way would be to apply strategies we already use when caring for hospitalized children. I recently had the chance to discuss this perspective for the Wall Street Journal.

Here are some highlights:

  1. Children’s hospitals minimize exposure to hospital stressors. Providers in these institutions avoid waking kids up at night and try to eliminate unnecessary procedures like routine blood draws. The environment is designed to actively lift children’s spirits through bright and cheerful surroundings, dedicated play areas, and music and art therapy.
  1. Children’s hospitals almost universally provide children with access to child life specialists, who have been trained to engage with children and their families to permit age-appropriate expression and minimize anxiety. These individuals have completed formal training to become child life specialists. There is no common parallel in geriatric medicine.
  1. Parents are routinely made active members of the care team during and after hospitalization. As a result, they can prepare children for medical interventions, support them throughout their illness, and improve compliance with care plans. Too often, we ignore opportunities to similarly engage the family members and caregivers of hospitalized older adults.

In the end, we have multiple opportunities to improve the care of hospitalized older adults. Strategies commonly used with children in typical clinical practice provide one useful and very doable starting point.

By: Kumar Dharmarajan, MD