Nephrology and Palliative Care

Christian T. Sinclair, MD

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In this issue, Kidney News Editorial Board member Edgar Lerma, MD, interviewed Christian T. Sinclair, MD, this month’s special section editor, about palliative care in kidney disease. Dr. Sinclair is Assistant Professor in the Division of Palliative Medicine at the University of Kansas Health System in Kansas City, KS. We hope you enjoy this introduction to palliative care in nephrology, as well as the set of articles that follow. More articles will appear in the next issue.

Conservative care in ESRD seems to be in the limelight of late. However, this is not a new concept. How did interest in palliative care begin, and where are we right now?

It is important to note the official designation of hospice and palliative medicine as a new medical specialty in 2008 by the American Council on Graduate Medical Education (ACGME). Before then, research on quality of life, symptoms, and shared decision-making was often scattered across journals, specialties, and disciplines. Since 2008, with more clinicians practicing palliative medicine full time and more research being accumulated and incorporated into clinical care and educational programs, it has become much easier to see the opportunities for palliative care and nephrology to work together.

There is some confusion about palliative care and hospice, because there seems to be a lot of overlap. What are the differences and similarities?

The similarities between palliative care and hospice exist in the approach to care (quality of life, patient-focused, and with an emphasis on skilled communication) and by extension, in the training of clinicians in these skills. However, from a patient’s point of view, these similarities do not really matter: just as ketchup and mustard are often paired, you use them in very different situations. The critical difference is that palliative care can be applied concurrently with hospice, even when a patient’s goals are life prolonging or disease directed. We are seeing a big movement upstream in the care of people with serious illness. Hospice is consulted for symptom-directed care when comfort is the only goal.

Can you talk about time-limited trials of dialysis? Where do they fit into palliative and hospice care?

Time-limited trials are an important tool in conversations about goals of care. They allow patients and clinicians to acknowledge the uncertainty that exists in any outcome prediction, while implicitly acknowledging that there will be an opportunity in the future to readdress the goals. At that time, the patient and family will have a chance to see how well the patient tolerates side effects or if their function or quality of life changes as they thought it might.

What is advance care planning, and when and where does it come in, given the current behavioral patterns of patients and health care providers? When is the ideal time for it?

Claiming our right to control what happens to our bodies when we cannot decide for ourselves is something any competent adult should do, even if they do not have a serious illness. It should happen throughout our adult lifespan and be readdressed when major life events come up. The current thinking is moving away from clinicians highlighting advance care planning because someone has a serious illness. It is moving toward participation in advance care planning, because it is a responsibility to let people know who to talk with to share your values and goals. There are various tools that have different benefits and limitations, like living wills (values, goals, desired or undesired treatments), durable power of attorney (identifying a surrogate decision maker), and medical orders (e.g., DNAR [Do Not Attempt Resuscitation] and POLST [Physician Orders for Life-Sustaining Treatment]).

What do you perceive as barriers to conservative care from the patient’s perspective? From the primary care physician’s perspective? From the nephrologist’s perspective?

One of the primary barriers for all of the above is that our health care delivery system is not necessarily well suited to make the choice for conservative care in ESRD visible. Upstream palliative care is beginning to make headway in clinics and in the community, but there are still far fewer providers compared with potential demand. In addition, each community may handle the interaction between nephrology and palliative care differently. Maybe your local palliative care clinics only see patients with advanced cancer or heart failure, or maybe you do not have outpatient palliative care beyond a few home health–based providers with limited specialty training or oversight.

Other barriers include balancing the time it takes to have these conversations, but with the new advance care planning codes approved, there is some reimbursement. Also, these conversations can take place over time and with different members of your nephrology team, like social workers. Two other common barriers are education and experience. If we do not get a chance to see this modeled in our training and if it does not exist in our community, it is much easier to stay on the same familiar paths instead of blazing a new trail. Therefore, I think it is essential that local nephrologists and palliative clinicians gather to discuss how they are serving their community together.

Can you discuss the concept of spirituality as it relates to chronic kidney disease?

Spirituality is such a critical part of many people’s view of their world. Understanding how their faith influences their social support, hopes, fears, and even medical choices is important for us to acknowledge and explore in a respectful and supportive manner. Having access to a chaplain in a dialysis clinic or when working with a transplant team may be very helpful to make sure that these needs are being recognized.

What about the economics of conservative care in ESRD, e.g., insurance coverage?

One of the major challenges is the unique Medicare programs that cover dialysis and hospice care. Because they cannot both be accessed at the same time, it makes it challenging to work with patients in the transition off dialysis and onto hospice care. For more upstream palliative care support, the physician’s role is covered by E&M codes, like any specialist physician. However, with the increased time-based billing and lack of procedures, there is not always a way to balance the salary. Therefore, health care systems and hospitals often support part of the salary. Add to this the lack of direct coverage for vital team support from nurses, social workers, and chaplains, and you can understand why palliative care has had such sporadic growth.

In a study published in 2003, the authors looked at octogenarians with stage 5 chronic kidney disease and showed 29- versus 9-month survival rates on dialysis versus not on dialysis (1). In another study published in 2007 involving patients 75 years or older, the authors looked at 1-year survival rates (84% versus 68% on dialysis versus not on dialysis), seeming to suggest that patients live longer on dialysis (2). As a nephrologist, I have been asked many times, “If I don’t go on dialysis, how long do I have?” This is a very difficult question to answer. Can you suggest a constructive and informative way to answer this question?

My favorite topic in medicine is prognostication. We are fearful of the uncertainty inherent in predicting the future, but we are so dependent on it to make some of life’s most important decisions. It is important to accept that, although we are not perfect at prognosis, clinicians, as a group, do have decent results when it comes to prognostication around end of life. To narrow down the accuracy for an individual gets much harder. I try to take a worst case, best case, and expected case approach. It allows for the uncertainty but gives a reasonable range for people to expect. It is also used to tell people how we are making this assessment. If it is because they are getting dangerously hypotensive during hemodialysis, it is important to share that concern. We should be basing these conversations on our clinical experience, published research, mortality calculators, and the data from our own organizations. And documenting what we said.

"September 2017 (Vol. 9, Number 9)"

References

1. Joly D, et al. Octogenarians reaching end-stage renal disease: cohort study of decision-making and clinical outcomes. J Am Soc Nephrol 2003; 14:1012–1021.

2. Murtagh FE, et al. Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrol Dial Transplant 2007; 22:1955–1962.