Skip to main content

Prognostic Disclosure and Other Palliative Care Needs in Dialysis Patients



"Doctors are terrible at prognostication."

This is a line that I often hear from other doctors in clinical practice.  While relatively untrue purely based on prognostic accuracy (our prognostic estimates do correlate with survival), this phrase is absolutely true when it comes to the delivery of prognostic information to our patients.

Further evidence of this was revealed in a recent study of prognostic disclosure in dialysis patients published in JAMA Internal Medicine.  The gist of the paper is that prognosis is rarely discussed with patients receiving dialysis leading to significant discordance between what nephrologists and patients think is the prognosis, as well as their beliefs on their candidacy for kidney transplant.

The authors’ of the study enrolled patients from two hemodialysis units affiliated with academic medical centers.  All of these patients were seriously ill, based on a predicted risk of dying in the next year of at least 20%.  Among the 62 patients interviewed, the study found:

  • Not a single patient reported receiving an estimate of life expectancy from a nephrologist  
  • Nephrologists reported having given prognosis to only 2 patients of these 62 patients 
  • Nephrologists stated that they would not provide any estimate of prognosis even if their patient insisted for 60% of patients

The results also revealed that even though patients’ more optimistic 1-year survival expectations were more accurate than those of their nephrologists, patients’ longer-term survival expectations significantly overestimated even their actual 2-year survival rates:
  • Only 6% of dialysis patients thought they had less than a 50% chance of being alive in 5 years.  Unfortunately, nearly half of the interviewees were dead at less than 2 years of follow-up. 
  • Nephrologists were more accurate with longer term survival as they estimated that more than half the patients had a likelihood of 5-year survival below 40%
  • Lastly, more than 1/3 of patients whose nephrologists said they were not transplant candidates believed they were.

Prognostic disclosure is just one area that we need to do better on in the care of older adults with End-Stage Renal Disease (ESRD), as articulated in another paper published today in the Clinical Journal of the American Society of Nephrologists.  This paper, co-authored by Manjula Kurella Tamura and Diane Meier, discusses both the needs of individuals with ESRD and the barriers to providing high quality palliative care in this population.  It also provides a way to improve the quality of care by giving us five priorities for action to improve quality of life for ESRD patients.  These five priorities are:
  1. Universal screening for palliative care that includes symptom assessments and treatment algorithms, as well as us of simple prognostic tools to identify high risk patients
  2. Incorporate palliative care measures in the ESRD Quality Incentives Program (QIP) 
  3. Train the nephrology workforce to deliver palliative care 
  4. Payment reforms for palliative care services
  5. Fund palliative care research

I couldnt agree more with these 5 priorities as we have talked about some of these in previous GeriPal posts.  In particular, Alex Smith has talked about the lack of research funding for examining communication, quality of life, and other outcomes of older adults with ESRD.  For example, he cited a study showing that between 2001 and 2005, no NIH grants supporting palliative care research were funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

We can do better.  We are not that "terrible".

by: Eric Widera (@ewidera)

Note - here are other GeriPal posts on Palliative Care needs of ESRD patients

Comments

Bruce Scott said…
Looks like Palliative Medicine providers need to be embedded in nephrology clinics as well. Apart from the goals of care and prognosis discussions, there is ample ground for symptom control (pain management is complicated by renal function, pruritus and nausea are common).

Once we double our reimbursement and quadruple our fellowship enrollment numbers, we'll be set.

The quote "Nephrologists stated that they would not provide any estimate of prognosis even if their patient insisted for 60% of patients" seems very strange. It doesn't really seem believable. They discuss the idea a bit, opining that clinician uncertainty about prognosis and fear of upsetting the patient are driving this lack of discussion. (They referenced work by Tulsky, et. al) Those fears don't seem like they should apply in the situations where a patient is INSISTING on discussion.

One additional thing that concerns me is that the surprise question is already included in the estimate of life expectency to determine eligiblity for the study. This means that provider estimate of life expectency isn't really an independent variable. While the information about the surprise question is certainly mentioned in the article, the implications on it being used as part of inclusion criteria does not seem to be discussed.
Igor Rotaev said…
My name is Igor, I'm from Western Europe.
I am ready to donate a kidney or part of my liver for good compensation.
I am a 30 year old man, blood group is O+, I don't drink or smoke.
I can travel anywhere worldwide to take tests and perform surgery. I will listen offer and conditions of recipient.
It is not a fake or joke.
igorrotaev@yahoo.com

Popular posts from this blog

Dying without Dialysis

There is a terrific article in this weeks Journal of Pain and Symptom Management by Fliss Murtagh of King's College in London about the epidemiology of symptoms for patients with advanced renal failure who die without dialysis.  This study is important because while we know that patients with advanced renal failure have a limited life expectancy and the average age of initiation of hemodialysis is increasing, we know little about the alternatives to hemodialysis.  Specifically, we know nothing about symptoms affecting quality of life among patients who elect not to start dialysis (so called "conservative management" - is this the best label?).  This article provides a terrific counterpoint to the article in last years NEJM showing that nursing home residents who initiated hemodialysis tended to die and decline in function (see GeriPal write up here). 

The study authors followed patients with the most advanced form of chronic kidney disease (the new name for renal failu…

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Does “compassionate deception” have a place in palliative care?

by: Olivia Gamboa (@Liv_g_g)

There is broad consensus in the medical community that lying to patients is unethical.  However, in the care of patients with dementia, the moral clarity of this approach blurs.  In her recent New Yorker article, “The Memory House,”  Larissa MacFarquhar provides an excellent portrait of the common devices of artifice, omission and outright deception that are frequently deployed in the care of patients with dementia.  She furthermore explores the historical and ethical underpinnings of the various approaches used in disclosing (or not) information to patients living with dementia.

Ms. MacFarquhar introduces the idea of “compassionate deception,” or the concept that withholding truths, or even promoting outright falsehoods, is a reasonable and even ethical choice for those caring for patients with dementia.  To the extent that it helps a person with dementia feel happier and calmer, allowing them to believe in a gentler reality (one in which, say, their spo…