Communication about End-of-Life Preferences Still Lacking, Stroke Study Finds
ARTICLE IN BRIEF
A new study that found that there were few documented end-of-life care preferences for patients who died after ischemic stroke spurred discussion about opportunities to have these discussions with patients in ambulatory settings.
Less than 40 percent of patients who died within 30 days after being hospitalized for an ischemic stroke had a documented discussion with their physicians during that hospitalization about their preferences regarding life-sustaining interventions, according to a new retrospective study published in the April 8 online edition of Neurology.
A multicenter team of investigators used a California state health database to identify a retrospective cohort of adults with ischemic strokes at all California acute care hospitals from December 2006 to November 2007, and then selected a representative sample of 39 hospitals stratified by stroke volume and mortality.
Among 198 patients at these hospitals who died within 30 days of admission for stroke, 47 percent of them had documented — either at their admission or within 48 hours after — that they wished to forego at least one life-sustaining intervention. Yet even among the subset of these patients who died while in hospital or were discharged to hospice, only 50 percent had documented discussions about end-of-life treatment. When these conversations did happen, the majority of these discussions occurred within the week before death.
“It is plausible that physicians are more comfortable initiating discussions about end-of-life care decisions in catastrophic situations or that these discussions more often lead to documented decisions to withhold life-sustaining interventions with severe strokes relative to milder ones, or both,” wrote the researchers, led by Maisha Robinson, MD, a neurologist and palliative medicine specialist at the Mayo Clinic in Jacksonville, FL.
Stroke severity was the most significant variable associated with documentation of limitations on life-sustaining interventions, the group found: physician communication was 56 percent less likely to be documented for patients with mild to severe strokes than for those with very severe strokes (p<0.05).
“In the ideal world, these conversations should be very common,” said Benzi Kluger, MD, MS, associate professor of neurology at the University of Colorado-Denver, who specializes primarily in Parkinson's disease and other movement disorders. “But as this study found, we see that these conversations really aren't even happening under extreme conditions. When someone has had a stroke severe enough that they die within a month, you'd think these discussions would be routine.”
Dr. Kluger believes that discussions about palliative care and end-of-life preferences should be added to quality improvement measures, both those developed internally by hospitals and externally, by government and third-party payers. The Patient-Centered Outcomes Research Institute funded a study by his team of investigators to assess whether outpatient palliative care improved patient-centered outcomes in Parkinson's disease. While their findings have not yet been published, he noted that after a quality improvement initiative with the palliative care team, the rate of advanced care directive completion among Parkinson's patients in this program reached over 90 percent.
“With concerted efforts, we can make this happen,” he said. “Stroke is a great example of where guidelines and quality improvement initiatives have improved care. Now, we have to look beyond mortality when talking about quality improvement. Advanced care planning and setting goals of care need to be part of quality. If you don't — as the new paper points out —people may be getting extra care that they don't want during their last few days or weeks of life. Right now, that's not getting counted against anyone for quality improvement, but perhaps it should.”
For example, Dr. Kluger suggested, dying at home rather than in a hospital or nursing home — when that is the patient's preference — could be considered a quality improvement benchmark. “In our palliative care clinic, some of what I would call our victories involve giving patients control of how and where they die.”
Samuel Frank, MD, associate professor of neurology at Boston University School of Medicine and a specialist in Huntington's disease, said: “When people get diagnosed with Huntington's, they know that that's ultimately going to lead to their demise. But they can still go on and live their lives and enjoy life for as much as ten to 30 years. Discussion about care preferences should be part of the normal course of business, rather than just: ‘You're going to die of this, please tell me how you want to die.’ Instead, I approach it as ‘Everybody needs to make these decisions, so while you are able to, we should talk about what your preferences are.’”
Dr. Frank said that with a major neurodegenerative condition like Huntington's, he tries to review patient preferences about such interventions at least once a year, adding that sometimes, impending clinical situations will spark these discussions. “For example, if a patient is choking on food more and more, when they go to get a swallowing evaluation, that can lead to the discussion about whether or not they will want a feeding tube. You need to address what's in front of you, and once that's addressed, then you can talk about other aspects of end-of-life care and life sustaining measures.”
Neurologists and other physicians aren't particularly good about predicting the future, Dr. Kluger added, so using prognosis or severity scales to select which patients need end-of-life care discussions isn't very effective.
“We see that in our work, including a paper we're finalizing now that finds that even among people with longstanding chronic diseases such as dementia, there's only about a 20 percent rate of documentation of advanced care planning. And it's very well documented in this [current Neurology] paper, which found that a lot of people who died within a month of diagnosis had lower stroke severity. This tells us that outpatient neurologists should be having these conversations with patients earlier in the disease process and as a routine part of practice, particularly because we have many patients with a known worsening trajectory of disease. Otherwise, it ends up happening just a few days before people die, if at all, when it doesn't really benefit them as much as it could.”
Nationally, the US needs a lot more “conversations practice” in discussing what we want in terms of end of life care. “Some death and decline is predictable, but a lot is not,” Dr. Kluger said. “This goes beyond neurology. It's imperative for all treating physicians to have goals-of-care discussions with their patients while the patient can still have a meaningful role in those decisions.”
As a model, he pointed to LaCrosse, WI, where fully 96 percent of people who die have signed an advance directive outlining their choices about how they would like to die (compared with just about 30 percent nationwide).
In the mid-1990s, Bud Hammes, MD, a medical ethicist within the local health system (Gundersen Healthcare Network), began working with the health system and other area health care organizations to promote an improved end-of-life care model called Respecting Choices Advance Care Planning, Dr. Kluger said. By 1995, 85 percent of people who died in LaCrosse had an advanced care directive; by 2009, the number reached 96 percent. The major benefit is that people have more control over their experience of dying; in a side benefit, the cost of care is reduced, with an average cost of care over the last two years of life about $18,000 in LaCrosse compared with $26,000 nationally.
“As a community they've made the decision to make end-of-life care discussion a high priority,” said Dr. Kluger. “This is an inspiring example that when you have the will to make that change in how you address end-of-life care, you can be amazingly successful.”
EXPERTS: ON COMMUNICATION ABOUT END-OF-LIFE PREFERENCES