Shared Decision-Making Not Common During Dialysis Discussions

Pam Harrison

February 01, 2016

There is little evidence that shared decision-making occurs between nephrologists and their patients when discussing the need to initiate dialysis, and it may be because physicians are not trained in the technique, a qualitative analysis of electronic medical records suggests.

"What really struck us going through these charts was how patients' values and preferences and healthcare goals really did not feature prominently in the chart at all," Susan Wong, MD, from the University of Washington, Seattle, told Medscape Medical News.

"But when decision-making is shared, patient's values and preferences and healthcare goals should be taking up half of the material used to make these decisions," she added.

"So we, as a profession, have to do more to bring these kinds of things out from our patients and incorporate their thoughts and feeling much more actively into our decisions about dialysis, because it's not just about hitting biomedical targets, it's trying to see how this all fits into what's really important to the patient."

The study was published online January 25 in JAMA Internal Medicine.

Post Hoc Qualitative Analysis

Dr Wong and colleagues conducted a post hoc qualitative analysis of electronic medical records of a national random sample of 1691 patients receiving care within the Department of Veterans Affairs who had initiated maintenance dialysis between January 2000 and December 2009. Approximately three quarters of patients in this group initiated dialysis as inpatients, and about the same percentage initiated dialysis with a hemodialysis catheter in place.

"In qualitative analysis, we identified 3 dominant, overlapping themes relevant to understanding the timing of initiation of dialysis: physician practices, sources of momentum, and patient-physician dynamics," the authors write.

For example, the decision to initiate dialysis usually involved a series of steps aimed at preparing patients for dialysis, Dr Wong explains.

These steps might include helping patients decide on whether they wanted hemodialysis or peritoneal dialysis, and how they wished to receive it: either through an arteriovenous fistula or graft or through a peritoneal catheter. In some patients, the authors found, initiation of dialysis was deferred until permanent access was ready, but for others, already having functional access seemed to tip the balance in favor of initiating dialysis under conditions that did not seem to indicate there was an immediate need for it.

Patients who were already admitted to hospital were often considered to be "predialysis" or approaching dialysis, and the question of when to initiate the procedure was routinely considered as part of their medical assessment. "Often, dialysis was initiated after physicians had attempted a series of medical interventions intended to reverse or halt the loss of kidney function and/or treat the signs and symptoms of advanced CKD," the authors write.

Indeed, plans to initiate dialysis often depended on how well patients responded to dietary changes or titration of diuretics used to try and mitigate the effects of advancing kidney failure, they add. Timing of initiation of dialysis also depended on whether patients were in hospital already or whether they attended a clinic. In hospital, the time frame was often compressed to hours or days before a decision to start dialysis was made, whereas it usually took a few weeks or months to make the same determination when patients were still making visits to the clinic.

Acute Illness a Trigger

Electrolyte abnormalities or signs of uremia, which are known triggers for initiation of dialysis, were usually noted in the medical record around the time dialysis was initiated, but acute illness was the most prominent trigger for the initiation of dialysis. "For patients with life-threatening illness, physicians often described an urgent 'need' for dialysis, and the imperative to treat appeared to supplant patients' choice in the matter," the investigators note. Even admissions for an illness unrelated to kidney disease was sometimes seen as an opportunity by physicians to coordinate the initiation of dialysis.

"We also found examples in which physicians seemed to seize the 'opportunity' to initiate dialysis during a hospital admission in patients who had been reluctant to start dialysis," the authors state. Physicians' perceived a need to optimize a patient's clinical status for an up-and-coming high-risk procedure such as surgery often triggered the impetus to initiate dialysis as well, on the assumption that outcomes would be better if dialysis were started in advance of the procedure.

Asked how she would react if a patient refused dialysis altogether, Dr Wong said she would ask them to tell her more about why they feel like that.

"We might find out that patients have fears and misunderstandings about what treatment is like," she said.

"We might also find out that they've had a family member or a friend who they saw go through dialysis, and they are finding it hard to cope with the idea of them doing the same thing.

"So if we explored our patients' feeling more, rather than just jump to the conclusion that a patient is being resistant or in denial, I think it's worthy of exploration, and if it turns out that dialysis doesn't align with their values, then it becomes how can we support you, and sometimes that may be palliative care or hospice."

Strong Conviction

Senior author of an accompanying editorial, Peter Reese, MD, from the University of Pennsylvania, Philadelphia, told Medscape Medical News that when patients lose their kidney function, nephrologists almost always will have a conversation about when to start dialysis, and that most of the time, patients will let their physician know either directly or indirectly how they feel about it.

"My sense is that any friction that occurs between physicians and patients probably arises in situations where the physician has a strong conviction that dialysis is the right decision but the patient is really reluctant," Dr Reese added. Despite strong encouragement from physicians to initiate dialysis, if patients are not ready or do not want to go along with the physician's recommendation, they may end up resentful and convey this resentment to physicians.

Furthermore, if the patient's renal function is very low and the goal for that patient is to hold off on dialysis, "then you need to see patients often. You need to check their blood levels of potassium and their volume status often, and you probably need to change their medical regimen, and you also need to feel comfortable that they will call you if they have problems breathing or they are really not feeling well," Dr Reese added.

In contrast, getting patients into dialysis three times a week is actually more convenient for physicians, as patients will automatically be checked for volume and potassium control, and discussions can be more readily handled. "As a default pathway, physicians may see dialysis as a solution to many problems at once, with one big limitation: If the patient's goal is to stay off dialysis, they may feel resentful," Dr Reese said.

In an effort to foster more patient-centered decision making, Dr Reese envisions some sort of feedback mechanism that will give providers a sense of how early they are initiating renal replacement therapy relative to their peers, along with measures of patient satisfaction, which would not be difficult to collect.

"My stereotype of nephrologists and nurses is that they are very competitive people, and so if you collect feedback from patients and report it back to practitioners and they don't look very good compared to their peers, that could change their behavior because nobody likes to get feedback that's not positive," Dr Reese speculated.

"So it's worth considering tying reimbursement to physician performance, although we'd have to make sure this was studied and led to the kind of outcomes that we all agree on before widespread adoption of such a practice."

The study was supported by a grant from the US Department of Veterans Affairs and by an interagency agreement between the VA Puget Sound Healthcare System and the Centers for Disease Control and Prevention. One coauthor reports receiving royalties from UpToDate. The other authors and editorialists have disclosed no relevant financial relationships.

JAMA Intern Med. Published online January 25, 2016. Article full text, Editorial full text

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