scientificamerican--2020-12-18--Few Kidney Patients Can Access Palliative Care or Hospice. Why?

The phone call came on a sunny spring afternoon earlier this year .
When Becky Swain answered , it was one of her husband ’ s fellow police officers .
Bob was okay , but he had been in an accident , Becky was told , and he was currently at Scotty B ’ s , a local diner in Tenino , Washington , known for its down-home cooking and milkshakes .
It wasn ’ t until Becky pulled into the parking lot that she realized her husband had crashed into Scotty B ’ s itself .
His police cruiser @ @ @ @ @ @ @ diner .
Bob had passed out behind the wheel on his way home from the police station — something that had never happened before , although he had long battled diabetes and high blood pressure .
A battery of tests at the local hospital couldn ’ t determine precisely why Bob had lost consciousness , but they did reveal something else : His kidneys were well on their way to failing completely .
At the rate he was declining , a nephrologist told him that he would be in crisis by the end @ @ @ @ @ @ @ survive longer than that , he ’ d need dialysis and — eventually , if he was lucky — a kidney transplant .
The only hitch , Becky said , was that Bob wanted none of it .
Faced with what seemed a lifelong gauntlet of blood drawing , catheters , restricted diets , and other interventions — and weighing the uncertainty of a transplant ever becoming available against the battery of other health problems he faced — Bob declined dialysis and instead chose hospice , so that he could live out however @ @ @ @ @ @ @ with his wife and his 130-pound Great Dane , Badge .
This series is a co-production between Undark and Scientific American and was supported by a reporting grant from the National Institute for Health Care Management Foundation .
He survived through the summer before finally succumbing to complications of his kidney disease at the age of 60 .
“ He was one of the most amazing men I 've ever known , ” Becky said .
“ He had true calling to be police .
He lived his whole life devoted to people @ @ @ @ @ @ @ And that played out in his decision.
” Individuals dying from cancer and , to a growing extent , circulatory and neurological conditions , have increasingly opted for hospice care at the end of life rather than pursuing a cure to the bitter end .
Between 2000 and 2012 , hospice spending by Medicare skyrocketed more than 400 percent , going from $ 2.9 billion to $ 15.1 billion .
By 2018 , that figure had reached $ 19.2 billion .
Palliative care , which focuses on helping those with serious illness improve @ @ @ @ @ @ @ symptoms , has also seen substantial growth , according to Diane Meier , a palliative care specialist at Mount Sinai Hospital in NYC and director of the Center to Advance Palliative Care .
“ Patients with a disease are not just that organ system , or that coronary artery , ” Meier said .
“ That individual issue is surrounded by a whole person.
” Bob Swain ’ s experience , however , was unusual in that meaningful hospice and palliative options are rarely made available in kidney disease care .
Jane Schell @ @ @ @ @ @ @ Pittsburgh who is board certified in both nephrology and palliative care , says that ’ s partly due to the fact that it still remains hard for nephrologists to predict a patient ’ s prognosis with any degree of certainty .
In addition , few nephrologists have received the kind of training that makes them comfortable helping their patients navigate complex end-of-life decisions .
This combination means that many physicians find themselves avoiding these discussions until someone is already at death ’ s door .
As a result , nephrologists often default to @ @ @ @ @ @ @ patients on dialysis , the dominant tool of the U.S. kidney care system , despite research suggesting that the process may not actually let them live significantly longer .
“ What we have learned , and that patients are teaching us , is that not every patient will get the benefits that they hope for with dialysis , ” Schell said .
This hasn ’ t yet resulted in a significantly greater utilization of hospice care for these patients , however .
According to an August 2020 report from the National Hospice and @ @ @ @ @ @ @ of the 1.55 million Medicare patients enrolled in hospice in 2018 were diagnosed with kidney failure .
Research shows that this reluctance to refer these patients to hospice care makes it more likely they ’ ll be subject to costly and often painful interventions at the end .
A 2018 study in JAMA Internal Medicine found that only 20 percent of Medicare patients on dialysis utilized hospice ; of those that did , 41 percent were in hospice for three days or fewer before death , resulting in outcomes little different than those @ @ @ @ @ @ @ Patients who used hospice for 15 days or more , however , were less likely to undergo invasive procedures or be admitted to the intensive care unit , and had lower medical costs in the last week of life .
Complicating matters even further is the fact that Medicare rules classify dialysis as a “ life-extending ” treatment , meaning it is not typically covered under Medicare ’ s hospice benefit .
This means that for Medicare-dependent individuals , choosing to continue dialysis often prevents them from also receiving hospice care , says @ @ @ @ @ @ @ University of California , San Francisco .
Grubbs and Schell are part of a growing movement of nephrologists pushing for the incorporation of palliative care , advanced care planning , and other person-centered approaches in routine kidney disease treatment .
Schell , along with colleague Amar Bansal , opened one of the country ’ s first combined renal and palliative care clinics in 2012 to treat all chronic kidney disease patients at the University of Pittsburgh Medical Center .
The goal is to provide care that the physicians consider more aligned with patient @ @ @ @ @ @ @ who want to manage their condition with medications and lifestyle changes instead of dialysis .
“ The focus is often on living , on decisional support — helping somebody make a decision that 's right for them , ” Bansal said .
“ It helps align what choices they face with kind of the person that they are .
And that 's sort of where the joy really is.
” The medical profession has long imagined itself in a battle against death , with an arsenal of increasingly powerful surgeries and therapies at @ @ @ @ @ @ @ was practicing in the 1970s , however , he began to see the collateral damage from this unceasing duel with mortality .
After all , medicine was ultimately doomed to lose .
What Cassell couldn ’ t ignore was what he perceived as the avoidable suffering this Sisyphean battle created .
What his patients nearing the end wanted — what they said they needed — Cassell recalls , was a physician who saw beyond their metastasizing cancer cells or failing organs and treated them as the full individuals that they were : human @ @ @ @ @ @ @ and foibles who also happened to be dying .
This was the dawn of palliative care , a movement which extended the principles of hospice care beyond the dying to anyone with life-limiting disease .
This includes patients diagnosed with everything from chronic obstructive pulmonary disease , to neurodegenerative conditions , to heart disease and cancer , according to Sara Davison , a palliative care physician at the University of Alberta in Canada .
“ People hear ‘ palliative ’ and they think end of the road , nothing more we can do @ @ @ @ @ @ @ but it 's not , ” she said .
In 2006 , palliative medicine was recognized as a medical subspecialty in the U.S. , much to Cassell ’ s dismay .
To him , palliative care would ideally become part of standard medical care rather than a field unto itself .
“ My idea was that what was going to happen was that we would be very successful in the care of the dying , and the idea would spread to the rest of medicine , ” Cassell said .
Whether that might @ @ @ @ @ @ @ , but what ’ s clear is that this type of holistic care runs distinctly counter to how most physicians continue to be trained , says Ann O ’ Hare , a nephrologist at the University of Washington and the Veterans Affairs Puget Sound Health Care System .
The biomedical model of health that she and other physicians were taught in medical school focuses on specialization , channeling doctors to develop expertise in diseases related to specific organ systems in the body .
Cardiologists treat heart disease .
Nephrologists focus on the renal @ @ @ @ @ @ @ model , O ’ Hare says , and life-saving treatments like dialysis and transplantation wouldn ’ t exist without it .
But it works by putting the person as a whole in the background , and teaching physicians to be responsible for just one part of a patient ’ s body .
“ What happens under this model is the person gets lost and fragmented , ” O ’ Hare said .
“ And it can be very difficult , if not impossible , to put the person back together.
” Palliative care @ @ @ @ @ @ @ to start making patients whole again , and its increasing influence has paralleled the rise in hospice care .
Both types of treatment , which were pioneered in oncology departments , according to Meier , seek to consider people not just as cases of disease , but as impacted individuals , each with their unique tapestry of interests , experiences , and values .
These models emphasize , for example , collaboration between patients and physicians in determining not just the best course of treatment for fighting the disease to stave off death @ @ @ @ @ @ @ the course that best preserves the patient ’ s ability to engage in the activities that are meaningful to their lives and well-being .
At her first meeting with a new palliative care patient , Meier begins by introducing herself and saying that she and her team are there to help the patients with their care .
But before she can help , she tells them she needs to understand who they are as a person and invites them to share .
Then , she says , “ I stop talking.
” Through @ @ @ @ @ @ @ can gain an understanding of what makes patients tick and what to them makes their lives worth living .
For some patients , attending religious services may be a priority ; for others , it could be spending time with children and grandchildren .
Different types of dialysis have different risks and benefits .
So does kidney supportive care , an alternative course of treatment that employs diet changes , exercise , and medication to manage the disease .
A kidney patient receiving palliative care might experience fatigue and severe itching known as @ @ @ @ @ @ @ palliative care specialist like Schell would be looking out for these symptoms , and she might prescribe a medication called gabapentin to relieve the itching , while also adjusting the timing and duration of dialysis to lessen the feelings of fatigue .
For those who are using supportive care , also known as conservative care , Schell will review their medications to determine if adjusting the timing , dosage , or particular prescriptions might make the patient feel more energetic , which is particularly important at a time in their lives when they @ @ @ @ @ @ @ transition to hospice care once a physician believes that they will live for less than six months if their illness is allowed to take its natural course .
Kidney failure patients on hospice care who stop dialysis can experience fluid build-up that makes it difficult to breathe , along with severe pain and nausea .
Schell says that opioid analgesics are useful for alleviating shortness of breath and pain in hospice patients , while other medications can reduce nausea .
Simply using pillows to elevate the head can also make it easier to @ @ @ @ @ @ @ and hospice care grew in oncology , health policy researchers were able to show that their use not only increased a patient ’ s quality of life , but also often allowed them to survive longer .
A landmark 2010 study of individuals newly diagnosed with metastatic lung cancer who received palliative care at diagnosis died an average of 11.6 months after diagnosis , compared to 8.9 months who received standard care .
In the last decade , palliative medicine has also begun to make inroads into caring for those with serious heart @ @ @ @ @ @ @ as cardiologists and pulmonologists began to recognize the specialty ’ s benefits to cancer patients .
“ Despite all of our advances in science and sub-specializations , we were kind of losing the forest for the trees , meaning we were not taking care of whole people in the context of families and societies , ” Meier said .
A major exception to this growth has been in the treatment of adults with kidney disease and kidney failure , the 9th leading cause of death in the U.S. , according to the Centers @ @ @ @ @ @ @ a 2019 study of 5.23 million hospitalizations in kidney failure patients from 2006 to 2014 , only 1.5 percent involved palliative care .
One reason , argues a 2018 paper in the American Journal of Kidney Disease , is simple lack of access , particularly in rural areas of the country .
( A recent report found that less than 20 percent of rural hospitals with 50 or more beds have a dedicated palliative care department , and most physicians with this training are concentrated in large urban centers . )
The researchers @ @ @ @ @ @ @ dialysis treatment , which typically involves going to a clinic for a few hours three times a week , can make it hard for patients to add in yet another medical appointment .
Echoing Schell , Keren Ladin of Tufts University says that physicians struggle to predict how long a patient is going to live .
This lack of prognostic indicators makes it hard to begin discussions around end-of-life care and hospice until much later in the process , she said .
As a result , discussions of kidney failure treatment tend to @ @ @ @ @ @ @ who research has shown will struggle with this form of therapy .
Ladin says that nephrologists often frame the issue as “ this patient will die if they don ’ t start dialysis ” — which implies that their death is imminent .
While that may be true for some patients , it isn ’ t always the case , Ladin says — and the research backs her up .
A 2015 meta-analysis of 89 studies published between 1976 and 2014 showed that 71 percent of patients treated with supportive care were still @ @ @ @ @ @ @ between 73 percent to 78 percent of dialysis patients .
Despite these results , the message doesn ’ t always make it down to patients .
When Grubbs interviewed 15 kidney failure patients over 65 years of age and their families , she found nearly all believed that dialysis was the only form of treatment for kidney failure .
They also didn ’ t have a good understanding of the complicated realities of what it meant to be on dialysis , according to the study she published in 2019 in Kidney Medicine .
@ @ @ @ @ @ @ side effects , ” she said .
At the University of Rochester in New York , nephrologist Fahad Saeed saw many of his patients make this same misjudgment about dialysis so frequently that he began to use a specific term to describe it : dialysis regret .
It often occurred in his very elderly kidney failure patients with a host of co-occurring conditions like diabetes , heart disease , and cancer .
To study the phenomenon , Saeed and colleagues administered a 41-question survey to 397 dialysis patients asking them about their decision @ @ @ @ @ @ @ five of the respondents said they regretted beginning dialysis .
Those that said they had started dialysis to please doctors or family were twice as likely to have dialysis regret .
Factors like having a living will and discussing life expectancy with doctors dramatically reduced that risk .
“ Currently , the way we 're making decisions , we 're not giving patients enough autonomy to make choices informed by their own values and preferences , ” Saeed said .
“ Input is important , but it should be supportive not directive.
” @ @ @ @ @ @ @ of discussions with physicians are important because they help patients begin the mental adjustment to life on dialysis and the prospect of a shorter lifespan .
“ The biggest challenges for patients are often existential challenges , the massive adjustments that they have to make to their ongoing illness , to life on dialysis , and then kind of confronting their own mortality , ” she said .
Bob Swain was faced with just such a decision this summer .
After being discharged from the hospital , his nephrologist told him his kidneys @ @ @ @ @ @ @ they completely failed .
If he wanted to live beyond that , he would need dialysis .
The conversation never went much further , his wife Becky said , because it seemed so far in the future .
More immediately , Bob was trying to manage complications from his diabetes and high blood pressure .
Chronic high blood sugar from his diabetes damaged the nerves in his legs and feet , a condition known as neuropathy that left him with a fierce burning sensation .
He also had a pressure sore on his @ @ @ @ @ @ @ ’ s podiatrist monitored his wound weekly and , several months after his car accident , decided it was starting to show signs of infection .
The doctor wrote a prescription for antibiotics in July , which Bob dutifully took .
The drugs , however , destroyed the limited kidney function Bob had left .
He needed to make a decision about dialysis immediately .
But Bob ’ s doctors never really discussed conservative or supportive kidney management , Becky said .
It was basically dialysis or bust .
Bob talked to his @ @ @ @ @ @ @ and Becky said that as soon as he heard that home dialysis meant that he would have to keep his dog , Badge , out of the bedroom at night to prevent infection , she could see he had made up his mind .
“ The doctors said , ‘ Are you sure ?
Are you sure ?
’ But he never wavered , ” Becky said .
It wasn ’ t just being deprived of his four-legged sleeping companion .
Bob ’ s doctor also explained that the dialysis wouldn ’ t @ @ @ @ @ @ @ abrupt and serious restrictions on his food and water intake .
The nephrologist also didn ’ t think Bob would be able to keep working .
To Bob , it just wasn ’ t worth it .
Instead , he opted for hospice care so he could spend his last days at home .
“ Dialysis would prolong his life , but it would not cure the things that he struggled the most with , ” Becky said .
She says she told her husband , “ The most honorable thing to do @ @ @ @ @ @ @ be your decision.
” She said that Bob replied , “ You will never know how much that means to me .
I want quality versus quantity.
” Swain ’ s choice of hospice care was unusual , even for a middle-aged White professional man with access to good health care like himself .
As a young resident in the ICU , Nwamaka Eneanya , now a nephrologist at the University of Pennsylvania , found that many of the renal patients she cared for were “ blindsided ” by the need to discuss @ @ @ @ @ @ @ broached the topic with them .
“ The patients that were on dialysis — particularly Black patients — and their families had never had those discussions before , ” Eneanya said .
She recalled a 2010 paper published in the New England Journal of Medicine that found the early integration of palliative care — including developing goals of treatment , managing symptoms , and shared decision-making — in the treatment of metastatic lung cancer allowed patients to have a better quality of life and left them less likely to experience symptoms of depression @ @ @ @ @ @ @ palliative care group also lived an average of 2.7 months longer , despite having less aggressive end-of-life care .
To Eneanya , this showed the advantage of including palliative care for the treatment of all kidney failure patients , not just those nearing death .
Having those discussions at all can be challenging , Eneanya says , but it can be even more so for patients with low health literacy , who have a harder time reading prescription labels , developing relationships with doctors and nurses , managing disease symptoms , and attending @ @ @ @ @ @ @ national survey conducted in 2003 found that 58 percent of African Americans had low health literacy , compared to only 28 percent of Whites .
Racial and ethnic minorities also tend to show a preference for more aggressive end-of-life treatment , something that one 2016 study showed might be the result of low health literacy .
Whatever the cause , an August 2020 report from the National Hospice and Palliative Care Organization shows that White people are overrepresented among Medicare enrollees in hospice , while African Americans and Hispanics are underrepresented .
Eneanya @ @ @ @ @ @ @ severe kidney disease showed that Black patients are less familiar with hospice than their White counterparts and were less likely to have talked about their preferences for end-of-life care with their physician .
Eneanya suspects that physician bias may be playing a role here .
Nephrologists may assume that since so few of their minority patients broach the subject , they just aren ’ t interested , and so they simply don ’ t bother to ask , she says .
Alternately , physicians may be describing hospice in a way that is @ @ @ @ @ @ @ Other researchers have shown that those with kidney failure are hungry for information about their prognosis , even when their time left is limited .
A 2018 study by Ladin and colleagues showed that less than 30 percent of dialysis patients understood common terms used in end-of-life care planning , such as prognosis , hospice , quality of life , and intervention .
To Eneanya , this represented a crucial opportunity for her to help her patients , especially those with low health literacy , learn more about their kidney disease so that @ @ @ @ @ @ @ and make more informed decisions about their treatment .
This , in turn , will help patients discuss their end-of-life wishes with their treatment teams and family members in the earlier stages of kidney failure rather than at the end .
Understanding a patient ’ s end-of-life preferences is especially important as they get older .
In the 1960s , when dialysis first became available , only 8.1 percent of those starting dialysis were age 55 or older , but , according to the American Association of Kidney Patients , the average age @ @ @ @ @ @ @ U.S. is now 64 years .
Before flattening out over the past decade , the increase in rates of kidney failure over the previous three decades had been sharpest in those age 75 and older , many of whom also have diabetes , high blood pressure , and other chronic diseases .
These trends are evident in the survival rates of patients with chronic kidney disease .
Of the 300,000 people receiving in-center dialysis on January 1 , 2006 , 60 percent survived less than five years and 20 percent survived more than @ @ @ @ @ @ @ Hare and colleagues found in a 2019 study in JAMA Internal Medicine that the patients they surveyed routinely overestimated their life expectancy on dialysis .
And when UCSF ’ s Grubbs and her colleagues asked older kidney failure patients what they thought about their treatment options for the 2019 Kidney Medicine paper , many said they felt dialysis was their only choice .
What jolted her understanding of a patient ’ s potential dissatisfaction with dialysis was when an elderly Chinese-American woman Grubbs had treated briefly before she started on dialysis died by @ @ @ @ @ @ @ the patient and her family about supportive kidney management for her renal failure as an alternative , but when Grubbs tried to bring up the subject with the patient and her granddaughter , they reacted negatively .
It was almost like they felt Grubbs was trying to kill the woman , so Grubbs dropped the subject .
After she learned of her patient ’ s suicide , Grubbs dedicated much of her career towards preventing this kind of distress in other patients .
“ She supposedly had all this support around her , @ @ @ @ @ @ @ , ” Grubbs said .
“ And I had been in a position where I could have , I should have , maybe done something different.
” Grubbs realized that even patients who likely had less than a year to live were treated with the same aggressive dialysis prescription as an otherwise healthy 30-year-old waiting for a transplant .
They had to spend the same amount of time hooked up to a machine and follow the same restrictive diet to have their dialysis be considered “ adequate.
” Grubbs wanted to change this @ @ @ @ @ @ @ being focused on the disease and making all the lab tests pretty and meeting all the guidelines for maximum payment , that instead we shift the focus to ‘ What does this person need to have the rest of their time be as good as possible ?
’ ” she said .
If that meant accepting a higher blood phosphorous level so that person could have an ice cream , so be it .
If that meant shorter times hooked up to the dialysis machine or fewer sessions per week , no problem @ @ @ @ @ @ @ and she thought it provided the perfect solution for her kidney failure patients who , in other circumstances , would have qualified for a hospice diagnosis .
But she immediately ran into a huge hurdle : The “ life-extending ” designation of dialysis by Medicare for people with kidney failure .
To access the hospice benefit through Medicare , a person has to stop their normal coverage and enroll in the hospice benefit .
Although the payments are still technically coming through Medicare , the hospice benefit only covers pain relief and symptom @ @ @ @ @ @ @ this means that individuals depending on Medicare can ’ t receive dialysis and hospice care simultaneously — even if a hospice patient might be given several < em > more < /em > months to live if they stayed on dialysis .
It ’ s one of the major reasons why only around one in five dialysis patients make use of hospice care , and Grubbs has made it her personal mission to change that statistic through the use of palliative dialysis .
And that means changing how health care measures dialysis success @ @ @ @ @ @ @ but we do n't talk about quality of life , ” she said .
At the University of Pittsburgh Medical Center , Schell and Bansal have spent the last several years building a renal palliative care clinic , one that combines the ability to use palliative dialysis , along with supportive kidney management .
Importantly , they are part of an experimental pilot program with Medicare that allows patients to enroll in hospice and continue dialysis through a nonprofit dialysis clinic where Schell is also medical director .
To her , providing better @ @ @ @ @ @ @ “ In palliative care , we do n't often know the right answer , ” she said .
“ At the end of the day , it 's our job to be a guide for our patients and families .
Ultimately , they make the decision with our guidance and our help , and it may be different than what we expected or what we might choose for ourselves.
” The first difference Bob Swain noticed when he began hospice care was that his pain management improved .
When a nurse placed a @ @ @ @ @ @ @ leg to control his unrelenting neuropathy pain , “ all of a sudden , the pain went away , ” Becky said .
After Swain was discharged in late August , hospice nurses visited the house multiple times a week to evaluate Swain ’ s condition and monitor his pain levels .
Becky says that Badge , Swain ’ s Great Dane , nursed him when his official team wasn ’ t at the house .
Despite everyone ’ s hopes and efforts , Swain ’ s condition declined rapidly .
Within a @ @ @ @ @ @ @ his time asleep or unconscious .
Fluid began to build up in his body , giving him a swollen , puffy appearance .
Breathing became a struggle .
High doses of morphine and other painkillers , however , kept Swain comfortable , as did the constant notes of Swain ’ s favorite Pandora station based around MercyMe , a contemporary Christian music group .
Becky says she ’ s comforted by how at peace her husband was with his decision , and how little he suffered in his last days .
Not long @ @ @ @ @ @ @ in August , he sat with Becky in his truck in the parking lot of the local Hobby Lobby after one of his many medical appointments .
Becky says he turned to her and told her that she had brought his life great love .
He noted that he had enjoyed a 40-year career in a job that he was passionate about .
His kids were grown and in a good place , the grandchildren were thriving , and his relationship with his God was a good one , he said .
He @ @ @ @ @ @ @ ’ d be going when he died .
“ My life , ” Becky recalled him saying , “ is complete.
” And on Sept. 20 , 2020 , it was .

The phone call came on a sunny spring afternoon earlier this year. When Becky Swain answered, it was one of her husband’s fellow police officers. Bob was okay, but he had been in an accident, Becky was told, and he was currently at Scotty B’s, a local diner in Tenino, Washington, known for its down-home cooking and milkshakes.
It wasn’t until Becky pulled into the parking lot that she realized her husband had crashed into Scotty B’s itself. His police cruiser sat crumpled against the side of the diner. Bob had passed out behind the wheel on his way home from the police station — something that had never happened before, although he had long battled diabetes and high blood pressure. A battery of tests at the local hospital couldn’t determine precisely why Bob had lost consciousness, but they did reveal something else: His kidneys were well on their way to failing completely.
At the rate he was declining, a nephrologist told him that he would be in crisis by the end of the year, and that to survive longer than that, he’d need dialysis and — eventually, if he was lucky — a kidney transplant. The only hitch, Becky said, was that Bob wanted none of it. Faced with what seemed a lifelong gauntlet of blood drawing, catheters, restricted diets, and other interventions — and weighing the uncertainty of a transplant ever becoming available against the battery of other health problems he faced — Bob declined dialysis and instead chose hospice, so that he could live out however many days remained to him at home with his wife and his 130-pound Great Dane, Badge.
This series is a co-production between Undark and Scientific American and was supported by a reporting grant from the National Institute for Health Care Management Foundation.
He survived through the summer before finally succumbing to complications of his kidney disease at the age of 60. “He was one of the most amazing men I've ever known,” Becky said. “He had true calling to be police. He lived his whole life devoted to people, without really caring about himself. And that played out in his decision.”
Individuals dying from cancer and, to a growing extent, circulatory and neurological conditions, have increasingly opted for hospice care at the end of life rather than pursuing a cure to the bitter end. Between 2000 and 2012, hospice spending by Medicare skyrocketed more than 400 percent, going from $2.9 billion to $15.1 billion. By 2018, that figure had reached $19.2 billion. Palliative care, which focuses on helping those with serious illness improve their quality of life by alleviating their symptoms, has also seen substantial growth, according to Diane Meier, a palliative care specialist at Mount Sinai Hospital in NYC and director of the Center to Advance Palliative Care.
“Patients with a disease are not just that organ system, or that coronary artery,” Meier said. “That individual issue is surrounded by a whole person.”
Bob Swain’s experience, however, was unusual in that meaningful hospice and palliative options are rarely made available in kidney disease care. Jane Schell, a physician at the University of Pittsburgh who is board certified in both nephrology and palliative care, says that’s partly due to the fact that it still remains hard for nephrologists to predict a patient’s prognosis with any degree of certainty. In addition, few nephrologists have received the kind of training that makes them comfortable helping their patients navigate complex end-of-life decisions. This combination means that many physicians find themselves avoiding these discussions until someone is already at death’s door. As a result, nephrologists often default to starting even their extremely elderly and frail patients on dialysis, the dominant tool of the U.S. kidney care system, despite research suggesting that the process may not actually let them live significantly longer.
“What we have learned, and that patients are teaching us, is that not every patient will get the benefits that they hope for with dialysis,” Schell said.
This hasn’t yet resulted in a significantly greater utilization of hospice care for these patients, however. According to an August 2020 report from the National Hospice and Palliative Care Organization, only 2.3 percent of the 1.55 million Medicare patients enrolled in hospice in 2018 were diagnosed with kidney failure. Research shows that this reluctance to refer these patients to hospice care makes it more likely they’ll be subject to costly and often painful interventions at the end. A 2018 study in JAMA Internal Medicine found that only 20 percent of Medicare patients on dialysis utilized hospice; of those that did, 41 percent were in hospice for three days or fewer before death, resulting in outcomes little different than those who never entered hospice at all. Patients who used hospice for 15 days or more, however, were less likely to undergo invasive procedures or be admitted to the intensive care unit, and had lower medical costs in the last week of life.
Complicating matters even further is the fact that Medicare rules classify dialysis as a “life-extending” treatment, meaning it is not typically covered under Medicare’s hospice benefit. This means that for Medicare-dependent individuals, choosing to continue dialysis often prevents them from also receiving hospice care, says Vanessa Grubbs, a nephrologist at the University of California, San Francisco.
Grubbs and Schell are part of a growing movement of nephrologists pushing for the incorporation of palliative care, advanced care planning, and other person-centered approaches in routine kidney disease treatment. Schell, along with colleague Amar Bansal, opened one of the country’s first combined renal and palliative care clinics in 2012 to treat all chronic kidney disease patients at the University of Pittsburgh Medical Center. The goal is to provide care that the physicians consider more aligned with patient values and preferences, including for those who want to manage their condition with medications and lifestyle changes instead of dialysis.
“The focus is often on living, on decisional support — helping somebody make a decision that's right for them,” Bansal said. “It helps align what choices they face with kind of the person that they are. And that's sort of where the joy really is.”
The medical profession has long imagined itself in a battle against death, with an arsenal of increasingly powerful surgeries and therapies at its disposal. When physician Eric Cassell was practicing in the 1970s, however, he began to see the collateral damage from this unceasing duel with mortality. After all, medicine was ultimately doomed to lose.
What Cassell couldn’t ignore was what he perceived as the avoidable suffering this Sisyphean battle created. What his patients nearing the end wanted — what they said they needed — Cassell recalls, was a physician who saw beyond their metastasizing cancer cells or failing organs and treated them as the full individuals that they were: human beings with hopes and dreams and preferences and foibles who also happened to be dying. This was the dawn of palliative care, a movement which extended the principles of hospice care beyond the dying to anyone with life-limiting disease. This includes patients diagnosed with everything from chronic obstructive pulmonary disease, to neurodegenerative conditions, to heart disease and cancer, according to Sara Davison, a palliative care physician at the University of Alberta in Canada.
“People hear ‘palliative’ and they think end of the road, nothing more we can do, end of life terminal care, but it's not,” she said.
In 2006, palliative medicine was recognized as a medical subspecialty in the U.S., much to Cassell’s dismay. To him, palliative care would ideally become part of standard medical care rather than a field unto itself. “My idea was that what was going to happen was that we would be very successful in the care of the dying, and the idea would spread to the rest of medicine,” Cassell said.
Whether that might one day happen is difficult to say, but what’s clear is that this type of holistic care runs distinctly counter to how most physicians continue to be trained, says Ann O’Hare, a nephrologist at the University of Washington and the Veterans Affairs Puget Sound Health Care System. The biomedical model of health that she and other physicians were taught in medical school focuses on specialization, channeling doctors to develop expertise in diseases related to specific organ systems in the body. Cardiologists treat heart disease. Nephrologists focus on the renal system.
It’s a powerful model, O’Hare says, and life-saving treatments like dialysis and transplantation wouldn’t exist without it. But it works by putting the person as a whole in the background, and teaching physicians to be responsible for just one part of a patient’s body. “What happens under this model is the person gets lost and fragmented,” O’Hare said. “And it can be very difficult, if not impossible, to put the person back together.”
Palliative care, she says, is one way to start making patients whole again, and its increasing influence has paralleled the rise in hospice care. Both types of treatment, which were pioneered in oncology departments, according to Meier, seek to consider people not just as cases of disease, but as impacted individuals, each with their unique tapestry of interests, experiences, and values. These models emphasize, for example, collaboration between patients and physicians in determining not just the best course of treatment for fighting the disease to stave off death for as long as possible, but the course that best preserves the patient’s ability to engage in the activities that are meaningful to their lives and well-being.
At her first meeting with a new palliative care patient, Meier begins by introducing herself and saying that she and her team are there to help the patients with their care. But before she can help, she tells them she needs to understand who they are as a person and invites them to share. Then, she says, “I stop talking.”
Through this exchange, palliative physicians like Meier can gain an understanding of what makes patients tick and what to them makes their lives worth living. For some patients, attending religious services may be a priority; for others, it could be spending time with children and grandchildren. Different types of dialysis have different risks and benefits. So does kidney supportive care, an alternative course of treatment that employs diet changes, exercise, and medication to manage the disease.
A kidney patient receiving palliative care might experience fatigue and severe itching known as pruritis while on dialysis. A renal palliative care specialist like Schell would be looking out for these symptoms, and she might prescribe a medication called gabapentin to relieve the itching, while also adjusting the timing and duration of dialysis to lessen the feelings of fatigue. For those who are using supportive care, also known as conservative care, Schell will review their medications to determine if adjusting the timing, dosage, or particular prescriptions might make the patient feel more energetic, which is particularly important at a time in their lives when they need that energy most.
Patients can transition to hospice care once a physician believes that they will live for less than six months if their illness is allowed to take its natural course. Kidney failure patients on hospice care who stop dialysis can experience fluid build-up that makes it difficult to breathe, along with severe pain and nausea. Schell says that opioid analgesics are useful for alleviating shortness of breath and pain in hospice patients, while other medications can reduce nausea. Simply using pillows to elevate the head can also make it easier to breathe.
As the use of palliative and hospice care grew in oncology, health policy researchers were able to show that their use not only increased a patient’s quality of life, but also often allowed them to survive longer. A landmark 2010 study of individuals newly diagnosed with metastatic lung cancer who received palliative care at diagnosis died an average of 11.6 months after diagnosis, compared to 8.9 months who received standard care.
In the last decade, palliative medicine has also begun to make inroads into caring for those with serious heart and lung disease, Meier said, as cardiologists and pulmonologists began to recognize the specialty’s benefits to cancer patients.
“Despite all of our advances in science and sub-specializations, we were kind of losing the forest for the trees, meaning we were not taking care of whole people in the context of families and societies,” Meier said.
A major exception to this growth has been in the treatment of adults with kidney disease and kidney failure, the 9th leading cause of death in the U.S., according to the Centers for Disease Control and Prevention. In a 2019 study of 5.23 million hospitalizations in kidney failure patients from 2006 to 2014, only 1.5 percent involved palliative care.
One reason, argues a 2018 paper in the American Journal of Kidney Disease, is simple lack of access, particularly in rural areas of the country. (A recent report found that less than 20 percent of rural hospitals with 50 or more beds have a dedicated palliative care department, and most physicians with this training are concentrated in large urban centers.) The researchers also note that the time-intensive nature of dialysis treatment, which typically involves going to a clinic for a few hours three times a week, can make it hard for patients to add in yet another medical appointment.
Echoing Schell, Keren Ladin of Tufts University says that physicians struggle to predict how long a patient is going to live. This lack of prognostic indicators makes it hard to begin discussions around end-of-life care and hospice until much later in the process, she said. As a result, discussions of kidney failure treatment tend to center around dialysis, even in patients who research has shown will struggle with this form of therapy.
Ladin says that nephrologists often frame the issue as “this patient will die if they don’t start dialysis” — which implies that their death is imminent. While that may be true for some patients, it isn’t always the case, Ladin says — and the research backs her up. A 2015 meta-analysis of 89 studies published between 1976 and 2014 showed that 71 percent of patients treated with supportive care were still alive after one year, compared to between 73 percent to 78 percent of dialysis patients.
Despite these results, the message doesn’t always make it down to patients. When Grubbs interviewed 15 kidney failure patients over 65 years of age and their families, she found nearly all believed that dialysis was the only form of treatment for kidney failure. They also didn’t have a good understanding of the complicated realities of what it meant to be on dialysis, according to the study she published in 2019 in Kidney Medicine.
“Dialysis has a lot of negative side effects,” she said.
At the University of Rochester in New York, nephrologist Fahad Saeed saw many of his patients make this same misjudgment about dialysis so frequently that he began to use a specific term to describe it: dialysis regret. It often occurred in his very elderly kidney failure patients with a host of co-occurring conditions like diabetes, heart disease, and cancer. To study the phenomenon, Saeed and colleagues administered a 41-question survey to 397 dialysis patients asking them about their decision to start dialysis. Over one in five of the respondents said they regretted beginning dialysis. Those that said they had started dialysis to please doctors or family were twice as likely to have dialysis regret. Factors like having a living will and discussing life expectancy with doctors dramatically reduced that risk.
“Currently, the way we're making decisions, we're not giving patients enough autonomy to make choices informed by their own values and preferences,” Saeed said. “Input is important, but it should be supportive not directive.”
To O’Hare, these types of discussions with physicians are important because they help patients begin the mental adjustment to life on dialysis and the prospect of a shorter lifespan. “The biggest challenges for patients are often existential challenges, the massive adjustments that they have to make to their ongoing illness, to life on dialysis, and then kind of confronting their own mortality,” she said.
Bob Swain was faced with just such a decision this summer. After being discharged from the hospital, his nephrologist told him his kidneys had a year or two left before they completely failed. If he wanted to live beyond that, he would need dialysis. The conversation never went much further, his wife Becky said, because it seemed so far in the future. More immediately, Bob was trying to manage complications from his diabetes and high blood pressure. Chronic high blood sugar from his diabetes damaged the nerves in his legs and feet, a condition known as neuropathy that left him with a fierce burning sensation.
He also had a pressure sore on his foot that refused to heal. Bob’s podiatrist monitored his wound weekly and, several months after his car accident, decided it was starting to show signs of infection. The doctor wrote a prescription for antibiotics in July, which Bob dutifully took. The drugs, however, destroyed the limited kidney function Bob had left. He needed to make a decision about dialysis immediately.
But Bob’s doctors never really discussed conservative or supportive kidney management, Becky said. It was basically dialysis or bust. Bob talked to his doctors about what dialysis would entail, and Becky said that as soon as he heard that home dialysis meant that he would have to keep his dog, Badge, out of the bedroom at night to prevent infection, she could see he had made up his mind.
“The doctors said, ‘Are you sure? Are you sure?’ But he never wavered,” Becky said.
It wasn’t just being deprived of his four-legged sleeping companion. Bob’s doctor also explained that the dialysis wouldn’t improve his neuropathy pain and would mean abrupt and serious restrictions on his food and water intake. The nephrologist also didn’t think Bob would be able to keep working.
To Bob, it just wasn’t worth it. Instead, he opted for hospice care so he could spend his last days at home. “Dialysis would prolong his life, but it would not cure the things that he struggled the most with,” Becky said. She says she told her husband, “The most honorable thing to do as your spouse is to let it be your decision.”
She said that Bob replied, “You will never know how much that means to me. I want quality versus quantity.”
Swain’s choice of hospice care was unusual, even for a middle-aged White professional man with access to good health care like himself. As a young resident in the ICU, Nwamaka Eneanya, now a nephrologist at the University of Pennsylvania, found that many of the renal patients she cared for were “blindsided” by the need to discuss end-of-life issues as no one had previously broached the topic with them.
“The patients that were on dialysis — particularly Black patients — and their families had never had those discussions before,” Eneanya said.
She recalled a 2010 paper published in the New England Journal of Medicine that found the early integration of palliative care — including developing goals of treatment, managing symptoms, and shared decision-making — in the treatment of metastatic lung cancer allowed patients to have a better quality of life and left them less likely to experience symptoms of depression. The patients randomly assigned to the palliative care group also lived an average of 2.7 months longer, despite having less aggressive end-of-life care. To Eneanya, this showed the advantage of including palliative care for the treatment of all kidney failure patients, not just those nearing death.
Having those discussions at all can be challenging, Eneanya says, but it can be even more so for patients with low health literacy, who have a harder time reading prescription labels, developing relationships with doctors and nurses, managing disease symptoms, and attending regular appointments and checkups. A large national survey conducted in 2003 found that 58 percent of African Americans had low health literacy, compared to only 28 percent of Whites. Racial and ethnic minorities also tend to show a preference for more aggressive end-of-life treatment, something that one 2016 study showed might be the result of low health literacy. Whatever the cause, an August 2020 report from the National Hospice and Palliative Care Organization shows that White people are overrepresented among Medicare enrollees in hospice, while African Americans and Hispanics are underrepresented.
Eneanya’s own work in patients with severe kidney disease showed that Black patients are less familiar with hospice than their White counterparts and were less likely to have talked about their preferences for end-of-life care with their physician. Eneanya suspects that physician bias may be playing a role here. Nephrologists may assume that since so few of their minority patients broach the subject, they just aren’t interested, and so they simply don’t bother to ask, she says. Alternately, physicians may be describing hospice in a way that is off-putting or offensive to minority patients.
Other researchers have shown that those with kidney failure are hungry for information about their prognosis, even when their time left is limited. A 2018 study by Ladin and colleagues showed that less than 30 percent of dialysis patients understood common terms used in end-of-life care planning, such as prognosis, hospice, quality of life, and intervention. To Eneanya, this represented a crucial opportunity for her to help her patients, especially those with low health literacy, learn more about their kidney disease so that they can both better understand their prognosis and make more informed decisions about their treatment. This, in turn, will help patients discuss their end-of-life wishes with their treatment teams and family members in the earlier stages of kidney failure rather than at the end.
Understanding a patient’s end-of-life preferences is especially important as they get older. In the 1960s, when dialysis first became available, only 8.1 percent of those starting dialysis were age 55 or older, but, according to the American Association of Kidney Patients, the average age of someone who starts dialysis in the U.S. is now 64 years. Before flattening out over the past decade, the increase in rates of kidney failure over the previous three decades had been sharpest in those age 75 and older, many of whom also have diabetes, high blood pressure, and other chronic diseases.
These trends are evident in the survival rates of patients with chronic kidney disease. Of the 300,000 people receiving in-center dialysis on January 1, 2006, 60 percent survived less than five years and 20 percent survived more than 10 years. However, O’Hare and colleagues found in a 2019 study in JAMA Internal Medicine that the patients they surveyed routinely overestimated their life expectancy on dialysis. And when UCSF’s Grubbs and her colleagues asked older kidney failure patients what they thought about their treatment options for the 2019 Kidney Medicine paper, many said they felt dialysis was their only choice.
What jolted her understanding of a patient’s potential dissatisfaction with dialysis was when an elderly Chinese-American woman Grubbs had treated briefly before she started on dialysis died by suicide. Grubbs had wanted to tell the patient and her family about supportive kidney management for her renal failure as an alternative, but when Grubbs tried to bring up the subject with the patient and her granddaughter, they reacted negatively. It was almost like they felt Grubbs was trying to kill the woman, so Grubbs dropped the subject. After she learned of her patient’s suicide, Grubbs dedicated much of her career towards preventing this kind of distress in other patients.
“She supposedly had all this support around her, and she felt no other way out,” Grubbs said. “And I had been in a position where I could have, I should have, maybe done something different.”
Grubbs realized that even patients who likely had less than a year to live were treated with the same aggressive dialysis prescription as an otherwise healthy 30-year-old waiting for a transplant. They had to spend the same amount of time hooked up to a machine and follow the same restrictive diet to have their dialysis be considered “adequate.” Grubbs wanted to change this mindset.
“Instead of so much being focused on the disease and making all the lab tests pretty and meeting all the guidelines for maximum payment, that instead we shift the focus to ‘What does this person need to have the rest of their time be as good as possible?’” she said.
If that meant accepting a higher blood phosphorous level so that person could have an ice cream, so be it. If that meant shorter times hooked up to the dialysis machine or fewer sessions per week, no problem. Grubbs called this palliative dialysis, and she thought it provided the perfect solution for her kidney failure patients who, in other circumstances, would have qualified for a hospice diagnosis. But she immediately ran into a huge hurdle: The “life-extending” designation of dialysis by Medicare for people with kidney failure.
To access the hospice benefit through Medicare, a person has to stop their normal coverage and enroll in the hospice benefit. Although the payments are still technically coming through Medicare, the hospice benefit only covers pain relief and symptom management interventions. In most cases, this means that individuals depending on Medicare can’t receive dialysis and hospice care simultaneously — even if a hospice patient might be given several more months to live if they stayed on dialysis.
It’s one of the major reasons why only around one in five dialysis patients make use of hospice care, and Grubbs has made it her personal mission to change that statistic through the use of palliative dialysis. And that means changing how health care measures dialysis success.
“People talk about survival, but we don't talk about quality of life,” she said.
At the University of Pittsburgh Medical Center, Schell and Bansal have spent the last several years building a renal palliative care clinic, one that combines the ability to use palliative dialysis, along with supportive kidney management. Importantly, they are part of an experimental pilot program with Medicare that allows patients to enroll in hospice and continue dialysis through a nonprofit dialysis clinic where Schell is also medical director. To her, providing better care means first understanding your patient.
“In palliative care, we don't often know the right answer,” she said. “At the end of the day, it's our job to be a guide for our patients and families. Ultimately, they make the decision with our guidance and our help, and it may be different than what we expected or what we might choose for ourselves.”
The first difference Bob Swain noticed when he began hospice care was that his pain management improved. When a nurse placed a lidocaine patch on Swain’s left leg to control his unrelenting neuropathy pain, “all of a sudden, the pain went away,” Becky said. After Swain was discharged in late August, hospice nurses visited the house multiple times a week to evaluate Swain’s condition and monitor his pain levels. Becky says that Badge, Swain’s Great Dane, nursed him when his official team wasn’t at the house.
Despite everyone’s hopes and efforts, Swain’s condition declined rapidly. Within a week, he was spending most of his time asleep or unconscious. Fluid began to build up in his body, giving him a swollen, puffy appearance. Breathing became a struggle. High doses of morphine and other painkillers, however, kept Swain comfortable, as did the constant notes of Swain’s favorite Pandora station based around MercyMe, a contemporary Christian music group. Becky says she’s comforted by how at peace her husband was with his decision, and how little he suffered in his last days.
Not long after he was discharged from the hospital in August, he sat with Becky in his truck in the parking lot of the local Hobby Lobby after one of his many medical appointments. Becky says he turned to her and told her that she had brought his life great love. He noted that he had enjoyed a 40-year career in a job that he was passionate about. His kids were grown and in a good place, the grandchildren were thriving, and his relationship with his God was a good one, he said. He was confident that he knew where he’d be going when he died. “My life,” Becky recalled him saying, “is complete.”
And on Sept. 20, 2020, it was.


scientificamerican--2020-12-18--This Super Speedy Bird Barely Stops to Sleep

What look like tangled lines of abstract art are actually the result of time-lapse photography of the dizzying flight patterns of the common swift ( Apus apus ) taken in Barcelona , Spain , in June 2019 .
“ Every morning and afternoon they join in groups to fly in circles or chase each other .
They have many different flight behaviors ; that 's why it ’ s one of my favorites birds to work with , ” says photographer Xavi Bou , who took the shot as part of a long-term project called Ornithographies .
The aim of @ @ @ @ @ @ @ invisible flight paths visible to humans .
From their breeding grounds across Europe and Asia to their wintering grounds in Southern Africa , the dark brown birds capture food and material for their nests while airborne .
In fact , a 2016 study in Current Biology that attached small sensors that measured movement to several swifts in Sweden showed that they stayed aloft for 99 percent of their 10-month nonbreeding season .
The finding raises the possibility that common swifts sleep while airborne , as some other bird species have been shown to @ @ @ @ @ @ @ to their name : a 2010 study in the Journal of Avian Biology clocked one bird flying at 69.3 mph , the fastest on record for any bird during level flight .
The species seems to turn on its turbo drive during “ screaming parties , ” a social display where they swoop and circle and make high-pitched calls to each other .

What look like tangled lines of abstract art are actually the result of time-lapse photography of the dizzying flight patterns of the common swift (Apus apus) taken in Barcelona, Spain, in June 2019. “Every morning and afternoon they join in groups to fly in circles or chase each other. They have many different flight behaviors; that's why it’s one of my favorites birds to work with,” says photographer Xavi Bou, who took the shot as part of a long-term project called Ornithographies. The aim of the project is to make these otherwise invisible flight paths visible to humans. From their breeding grounds across Europe and Asia to their wintering grounds in Southern Africa, the dark brown birds capture food and material for their nests while airborne. In fact, a 2016 study in Current Biology that attached small sensors that measured movement to several swifts in Sweden showed that they stayed aloft for 99 percent of their 10-month nonbreeding season. The finding raises the possibility that common swifts sleep while airborne, as some other bird species have been shown to do. Swifts can also live up to their name: a 2010 study in the Journal of Avian Biology clocked one bird flying at 69.3 mph, the fastest on record for any bird during level flight. The species seems to turn on its turbo drive during “screaming parties,” a social display where they swoop and circle and make high-pitched calls to each other.
Science in Images


scientificamerican--2020-12-18--We Must Tear Down the Barriers That Impede Scientific Progress

We are in the midst of a once-in-a-generation opportunity to remake our approach to science .
This moment , in all its difficult uncertainty—COVID-19 , economic turmoil and the crescendo of a long overdue national discussion about racial justice—demonstrates why universities , funders and other research stakeholders should move decisively to embrace open science .
By adopting what are called “ open science ” practices , we can align the incentive structures of research production and consumption with our values , and catalyze the scientific progress our society so desperately needs .
The two of us—the president of Arizona State @ @ @ @ @ @ @ topped U.S. News & World Report ’ s “ Most Innovative Schools ” list since the inception of the category in 2016 , and the director of the Open Research Funders Group ( a collaboration of leading philanthropies that collectively confer more than $ 10 billion in grants annually ) —call on our peers to commit not only in principle , but also in practice , to creating a more efficient , effective and equitable research ecosystem .
Open science , to quote Michael Nielson ’ s Reinventing Discovery , is “ the @ @ @ @ @ @ @ should be openly shared as early as is practical in the discovery process.
” That open science is an integral tool in the fight against COVID-19 is indisputable : the importance of access to scientific articles and data to help identify promising vaccines and therapeutics was recognized by publishers and researchers alike early in the pandemic .
As a consequence , the research community has worked rapidly to take down the barriers—including article paywalls , data hoarding and siloed lab work— that chronically impede scientific progress .
The open dissemination , discussion and @ @ @ @ @ @ @ the place of these outdated norms .
Within one month of the first reported case , the virus was rapidly sequenced and openly posted to GenBank , the NIH genetic sequence database .
Scores of researchers racing to learn more about COVID-19 shared their early findings as openly accessible preprints .
These findings were tested and refined in real-time discussions that were tracked publicly and transparently .
Papers that could not withstand replication and reproducibility efforts were quickly and publicly debunked , allowing the scientific community to pursue more promising research avenues .
@ @ @ @ @ @ @ articles available to all .
The protocols and technology behind the Yale School of Public Health ’ s COVID-19 saliva test have been made available as open source .
Two clear conclusions can be drawn from this rapid alignment .
First , the daily workings of science have practical ramifications in all our lives .
Scientific norms affect not just researchers working in labs , but also policy makers , doctors , patients , families , and the general public .
Second , open science is the form of research dissemination and global @ @ @ @ @ @ @ knowledge that are exacerbated by COVID-19 .
If rapidly and openly sharing research data and papers is critical to understanding and combating coronavirus , doesn ’ t the same hold true for cancer ?
Heart disease ?
Climate change ?
The scientific community—moving with great speed and clarity of purpose—has clearly signaled that open science is the most efficient way to tackle issues that have a significant and direct effect on the lives of the general public .
The unambiguous conclusion is that open is better for science .
Importantly , open is @ @ @ @ @ @ @ example , around the turn of the century , the massive and massively successful Human Genome Project placed research results in the public domain .
This commitment to open science generated nearly $ 800 billion dollars in economic benefits between 1988 and 2010 , a return on investment of $ 141 for each dollar of the federal government ’ s investment in the project .
More than 310,000 jobs in the U.S. economy were created , directly and indirectly , totaling almost four million job-years of employment as a result of this scientific @ @ @ @ @ @ @ the development of global positioning systems to the real-world implementation of open science principles , a development that produced more than $ 50 billion in economic benefits .
Indeed , across a range of sectors from health care to energy , a McKinsey estimate from 2013 put the potential economic value of open data alone in the trillions of dollars annually , equivalent to more than three times the global economic impact of the automotive industry .
By leaning into open science practices , we can fuel innovation , job creation and economic @ @ @ @ @ @ @ 1941 , at a similar moment of upheaval and uncertainty , “ the enjoyment of the fruits of scientific progress in a wider and constantly rising standard of living ” is one of America ’ s basic expectations .
In addition to being better for science and better for the economy , open is better for society .
ASU has found strength in defining success not in whom it excludes , but whom it includes .
When knowledge and innovation rest in the hands of the few , we struggle to reach our @ @ @ @ @ @ @ published research democratizes information and allows more voices to join the scientific conversation .
It removes a layer of insularity in ways both big and small .
To take one example at the systemic level , the average library expenditures at Historically Black Colleges and Universities ( HBCUs ) are significantly less than those of non-HBCU counterparts .
This translates in real terms to a racialized inequality of access to the journal articles , books , and other materials upon which future research can be formulated .
At the individual level , the @ @ @ @ @ @ @ direct personal interactions .
Data that are otherwise proprietary may be shared among close peers and colleagues .
Scholars without access to paywalled articles can request copies from the authors , but may be hesitant to do so if they are not part of the same informal networks .
By making these materials open for all—to access , replicate , question and build upon—we can contribute to both levelling the playing field and widening the circle of science .
Universities , philanthropies , government agencies and other stakeholders can accelerate the positive effects @ @ @ @ @ @ @ , in our efforts to strengthen the economy , and in our quest for a more just society—by aligning our incentive structures with our values .
Practically , this means exercising specific points of leverage—including hiring , funding , tenure and promotion—to ensure that research practices become more open .
Many examples are flowering today .
Dozens of university departments include language in their job postings along the lines of “ This department values transparent , replicable research and open science principles.
” This sets the expectation that open practices will be a @ @ @ @ @ @ @ but , for the successful candidate , of the job itself .
A wide range of philanthropies are now asking grant applicants to explain how they have historically made their work open , and how , if funded , they will make their outputs open going forward .
This provides a powerful incentive ( the promise of financial support ) for researchers to adhere to open practices .
Aligning research incentives to reward open science practices may seem daunting , but university and philanthropic leadership can start the process by taking specific , @ @ @ @ @ @ @ effective in practice .
While a number of organizations have launched fully actualized open science programs , notably McGill ’ s Montreal Neurological Institute-Hospital ( The Neuro ) and the Rochester Institute of Technology ’ s Open @ RIT , university presidents and provosts can move their institutions systematically toward open simply by engaging in a structured dialog with their researchers .
In this spirit , we call on universities to emulate MIT and launch an open science task force .
MIT ’ s work began with a concise charge from its provost @ @ @ @ @ @ @ discussion of ways in which current policies and practices might be updated or revised to further the Institute ’ s mission of disseminating the fruits of its research and scholarship as widely as possible.
” The MIT model is a true collaboration among the administration , chairs and faculty that includes the development and deployment of open science plans tailored to the disciplinary considerations of each department .
It is predicated on the acknowledgement that what constitutes open science best practices in , say , anthropology , will differ from what works for @ @ @ @ @ @ @ are the many emerging norms and policies articulated by professional societies such as the Linguistics Society of America , the Society for the Improvement of Psychological Science and the American Geophysical Union .
Ideally , the recommended policies that arise from these task forces will resonate with faculty from both an institutional and a disciplinary perspective .
The ultimate goal is to develop `` mutually reinforcing vectors , '' an environment in which researchers hear consistently from a range of influencers at their university , within their discipline , and across potential funding @ @ @ @ @ @ @ encouraged and properly rewarded .
In support of this `` mutually reinforcing vectors '' approach , we also call on philanthropies to adopt grantmaking policies that encourage researchers to share their outputs ( articles , data , code , materials , etc . )
openly and rapidly .
In this effort , they can lean on the work of funders ranging from the American Heart Association to the Gates Foundation to the Michael J .
Fox Foundation to craft language and workflows that have been field-tested over thousands of grant conferrals .
Philanthropies @ @ @ @ @ @ @ ( developed by the Open Research Funders Group and endorsed by funders including the Sloan Foundation and the Wellcome Trust ) to implement a stepwise approach to more closely aligning their incentivization schemes with open science principles .
While open is better for science , the economy , society , it is not magic .
It takes concerted , direct effort by key stakeholders to effect change .
It also takes a community of practice—sharing successes , roadblocks , and solutions ; developing and testing resources that explain the whats , whys and @ @ @ @ @ @ @ opportunities to expand the “ coalition of the willing.
” One such effort is the National Academy of Science , Engineering , and Medicine ’ s Roundtable on Aligning Incentives for Open Science ( in which we both participate ) .
The Roundtable includes direct representation from colleges and universities , philanthropies and government agencies .
Crucially , the broader network of stakeholders engaging with the Roundtable also includes more than 500 professors , postdocs , librarians , professional society representatives , publishers , funders and other stakeholders .
For any university or @ @ @ @ @ @ @ take the plunge in the manner we have outlined above , we warmly encourage you to engage with the roundtable to get a better sense of the tangible steps your peers are taking to stimulate open science within their institutions .
There are hurdles to widespread adoption of open science practices , to be sure .
Researchers need proper training on data management plans , reuse licensing and other good open science hygiene .
Infrastructure must be developed and nurtured to preserve scientific data , curate it and render it actionable .
And @ @ @ @ @ @ @ which makes tackling big , cross-cutting initiatives like open science challenging .
While these obstacles are nontrivial , they are small in comparison to the scientific , economic , and societal benefits of open .
In a moment of great peril , maintaining the status quo will ultimately prove more costly .

We are in the midst of a once-in-a-generation opportunity to remake our approach to science. This moment, in all its difficult uncertainty—COVID-19, economic turmoil and the crescendo of a long overdue national discussion about racial justice—demonstrates why universities, funders and other research stakeholders should move decisively to embrace open science. By adopting what are called “open science” practices, we can align the incentive structures of research production and consumption with our values, and catalyze the scientific progress our society so desperately needs.
The two of us—the president of Arizona State University (ASU), which has topped U.S. News & World Report’s “Most Innovative Schools” list since the inception of the category in 2016, and the director of the Open Research Funders Group (a collaboration of leading philanthropies that collectively confer more than $10 billion in grants annually)—call on our peers to commit not only in principle, but also in practice, to creating a more efficient, effective and equitable research ecosystem.
Open science, to quote Michael Nielson’s Reinventing Discovery, is “the idea that scientific knowledge of all kinds should be openly shared as early as is practical in the discovery process.” That open science is an integral tool in the fight against COVID-19 is indisputable: the importance of access to scientific articles and data to help identify promising vaccines and therapeutics was recognized by publishers and researchers alike early in the pandemic. As a consequence, the research community has worked rapidly to take down the barriers—including article paywalls, data hoarding and siloed lab work— that chronically impede scientific progress.
The open dissemination, discussion and testing of COVID-19-related science has quickly taken the place of these outdated norms. Within one month of the first reported case, the virus was rapidly sequenced and openly posted to GenBank, the NIH genetic sequence database. Scores of researchers racing to learn more about COVID-19 shared their early findings as openly accessible preprints. These findings were tested and refined in real-time discussions that were tracked publicly and transparently. Papers that could not withstand replication and reproducibility efforts were quickly and publicly debunked, allowing the scientific community to pursue more promising research avenues. Society and commercial publishers made subscription-controlled coronavirus articles available to all. The protocols and technology behind the Yale School of Public Health’s COVID-19 saliva test have been made available as open source.
Two clear conclusions can be drawn from this rapid alignment. First, the daily workings of science have practical ramifications in all our lives. Scientific norms affect not just researchers working in labs, but also policy makers, doctors, patients, families, and the general public. Second, open science is the form of research dissemination and global collaboration that best reduces vexing limits to knowledge that are exacerbated by COVID-19. If rapidly and openly sharing research data and papers is critical to understanding and combating coronavirus, doesn’t the same hold true for cancer? Heart disease? Climate change? The scientific community—moving with great speed and clarity of purpose—has clearly signaled that open science is the most efficient way to tackle issues that have a significant and direct effect on the lives of the general public. The unambiguous conclusion is that open is better for science.
Importantly, open is also better for the economy. For example, around the turn of the century, the massive and massively successful Human Genome Project placed research results in the public domain. This commitment to open science generated nearly $800 billion dollars in economic benefits between 1988 and 2010, a return on investment of $141 for each dollar of the federal government’s investment in the project. More than 310,000 jobs in the U.S. economy were created, directly and indirectly, totaling almost four million job-years of employment as a result of this scientific undertaking. Similarly, we also owe the development of global positioning systems to the real-world implementation of open science principles, a development that produced more than $50 billion in economic benefits.
Indeed, across a range of sectors from health care to energy, a McKinsey estimate from 2013 put the potential economic value of open data alone in the trillions of dollars annually, equivalent to more than three times the global economic impact of the automotive industry. By leaning into open science practices, we can fuel innovation, job creation and economic growth. As Franklin Roosevelt opined in 1941, at a similar moment of upheaval and uncertainty, “the enjoyment of the fruits of scientific progress in a wider and constantly rising standard of living” is one of America’s basic expectations.
In addition to being better for science and better for the economy, open is better for society. ASU has found strength in defining success not in whom it excludes, but whom it includes. When knowledge and innovation rest in the hands of the few, we struggle to reach our collective potential. Access to data and published research democratizes information and allows more voices to join the scientific conversation. It removes a layer of insularity in ways both big and small. To take one example at the systemic level, the average library expenditures at Historically Black Colleges and Universities (HBCUs) are significantly less than those of non-HBCU counterparts. This translates in real terms to a racialized inequality of access to the journal articles, books, and other materials upon which future research can be formulated.
At the individual level, the exchange of scientific information often occurs in direct personal interactions. Data that are otherwise proprietary may be shared among close peers and colleagues. Scholars without access to paywalled articles can request copies from the authors, but may be hesitant to do so if they are not part of the same informal networks. By making these materials open for all—to access, replicate, question and build upon—we can contribute to both levelling the playing field and widening the circle of science.
Universities, philanthropies, government agencies and other stakeholders can accelerate the positive effects of open science—in the fight against COVID-19, in our efforts to strengthen the economy, and in our quest for a more just society—by aligning our incentive structures with our values. Practically, this means exercising specific points of leverage—including hiring, funding, tenure and promotion—to ensure that research practices become more open. Many examples are flowering today. Dozens of university departments include language in their job postings along the lines of “This department values transparent, replicable research and open science principles.” This sets the expectation that open practices will be a component of not only the job interview but, for the successful candidate, of the job itself. A wide range of philanthropies are now asking grant applicants to explain how they have historically made their work open, and how, if funded, they will make their outputs open going forward. This provides a powerful incentive (the promise of financial support) for researchers to adhere to open practices.
Aligning research incentives to reward open science practices may seem daunting, but university and philanthropic leadership can start the process by taking specific, concrete actions that have already been proven effective in practice. While a number of organizations have launched fully actualized open science programs, notably McGill’s Montreal Neurological Institute-Hospital (The Neuro) and the Rochester Institute of Technology’s Open@RIT, university presidents and provosts can move their institutions systematically toward open simply by engaging in a structured dialog with their researchers. In this spirit, we call on universities to emulate MIT and launch an open science task force. MIT’s work began with a concise charge from its provost, to “coordinate a renewed Institute-wide discussion of ways in which current policies and practices might be updated or revised to further the Institute’s mission of disseminating the fruits of its research and scholarship as widely as possible.”
The MIT model is a true collaboration among the administration, chairs and faculty that includes the development and deployment of open science plans tailored to the disciplinary considerations of each department. It is predicated on the acknowledgement that what constitutes open science best practices in, say, anthropology, will differ from what works for zoology.
Facilitating this bespoke departmental approach are the many emerging norms and policies articulated by professional societies such as the Linguistics Society of America, the Society for the Improvement of Psychological Science and the American Geophysical Union. Ideally, the recommended policies that arise from these task forces will resonate with faculty from both an institutional and a disciplinary perspective. The ultimate goal is to develop "mutually reinforcing vectors," an environment in which researchers hear consistently from a range of influencers at their university, within their discipline, and across potential funding sources that open practices are both warmly encouraged and properly rewarded.
In support of this "mutually reinforcing vectors" approach, we also call on philanthropies to adopt grantmaking policies that encourage researchers to share their outputs (articles, data, code, materials, etc.) openly and rapidly. In this effort, they can lean on the work of funders ranging from the American Heart Association to the Gates Foundation to the Michael J. Fox Foundation to craft language and workflows that have been field-tested over thousands of grant conferrals. Philanthropies can also draw from policy language templates (developed by the Open Research Funders Group and endorsed by funders including the Sloan Foundation and the Wellcome Trust) to implement a stepwise approach to more closely aligning their incentivization schemes with open science principles.
While open is better for science, the economy, society, it is not magic. It takes concerted, direct effort by key stakeholders to effect change. It also takes a community of practice—sharing successes, roadblocks, and solutions; developing and testing resources that explain the whats, whys and hows of open; and identifying key opportunities to expand the “coalition of the willing.” One such effort is the National Academy of Science, Engineering, and Medicine’s Roundtable on Aligning Incentives for Open Science (in which we both participate). The Roundtable includes direct representation from colleges and universities, philanthropies and government agencies.
Crucially, the broader network of stakeholders engaging with the Roundtable also includes more than 500 professors, postdocs, librarians, professional society representatives, publishers, funders and other stakeholders. For any university or philanthropy finding itself not yet prepared to take the plunge in the manner we have outlined above, we warmly encourage you to engage with the roundtable to get a better sense of the tangible steps your peers are taking to stimulate open science within their institutions.
There are hurdles to widespread adoption of open science practices, to be sure. Researchers need proper training on data management plans, reuse licensing and other good open science hygiene. Infrastructure must be developed and nurtured to preserve scientific data, curate it and render it actionable. And organizations must overcome their natural entropy, which makes tackling big, cross-cutting initiatives like open science challenging. While these obstacles are nontrivial, they are small in comparison to the scientific, economic, and societal benefits of open. In a moment of great peril, maintaining the status quo will ultimately prove more costly.


scientificamerican--2020-12-18--Forecasts of Epilepsy Seizures Could Become a Reality

Seizures are like storms in the brain—sudden bursts of abnormal electrical activity that can cause disturbances in movement , behavior , feelings and awareness .
For people with epilepsy , not knowing when their next seizure will hit can be psychologically debilitating .
Clinicians have no way of telling people with epilepsy whether a seizure will likely happen five minutes from now , five weeks from now or five months from now , says Vikram Rao , a neurologist at the University of California , San Francisco .
“ That leaves people in a state of looming uncertainty.
” Despite @ @ @ @ @ @ @ may not actually be random events .
Hints of cyclical patterns associated with epilepsy date back to ancient times , when people believed seizures were tied to the waxing and waning of the moon .
While this particular link has yet to be definitively proven , scientists have pinpointed patterns in seizure-associated brain activity .
Studies have shown that seizures are more likely during specific periods in the day , indicating an association with sleep–wake cycles , or circadian rhythms .
In 2018 , Rao and his colleagues reported the discovery of long-term @ @ @ @ @ @ @ to 30-day range—which they dubbed as “ multidien ” ( multiday ) rhythms .
By examining these rhythms in brain activity , the group has now demonstrated that seizures can be forecast 24 hours in advance—and in some patients , up to three days prior .
Their findings , published December 17 in Lancet Neurology , raise the possibility of eventually providing epilepsy patients with seizure forecasts that could predict the likelihood that a seizure will occur days in advance .
In their latest study , Rao ’ s group conducted a retrospective @ @ @ @ @ @ @ clinical trial with participants who had an FDA-approved , implanted neurostimulation device , NeuroPace , which uses a type of EEG to monitor both seizures and interictal epileptiform discharges ( pathological spikes in brain activity that occur between seizures ) .
( One of the study ’ s authors , Thomas Tcheng , is the senior director of preclinical research at NeuroPace . )
Using data about the timing of interictal epileptiform discharges and past seizures , the team developed a computational model that estimated whether or not a patient was at risk @ @ @ @ @ @ @ or days .
Maxime Baud , an epileptologist at the University of Bern in Switzerland and a co-author of the study , explains that they were not trying to predict when , exactly , the next seizure will happen , but rather to identify the probability that a seizure would happen over a given time period—akin to how weather forecasts provide a percentage of the likelihood for rain or shine on a given day .
When the team compared their forecasts to the actual occurrence of seizures in 18 participants , they found @ @ @ @ @ @ @ percent ) , the algorithm performed better than chance at predicting seizures 24 hours in advance .
In two of the patients ( 11 percent ) , it was able to forecast seizures up to three days in advance .
To further validate the model , they applied it to another , larger data set with 157 participants—this time , assessing whether the algorithm could forecast self-reported seizures , which are the primary tool used for assessment in the clinic .
The team found it could forecast seizures over 24 hours in 103 @ @ @ @ @ @ @ up to three days ahead in 61 ( 39 percent ) .
In general , chances of a seizure were highest during periods when both circadian and multidien cycles of brain activity were near their peak .
“ Prior work has been mostly focused on forecasting seconds , to minutes , to a few hours ahead of time ; this group has built on the work with multidien cycles to [ introduce ] a multi-day predictor , ” says Hitten Zaveri , a professor of computational neurophysiology at Yale University who wasn ’ @ @ @ @ @ @ @ [ The study ] has clearly been done very well , with good data and good observations.
” Forecasting on these longer horizons could provide significant benefit for people with epilepsy .
One of the biggest advantages is that it could help rectify deficiencies of existing treatments , says Jacqueline French , chief medical and innovation officer at the Epilepsy Foundation and professor of neurology at New York University , who was not involved in this study .
The major issue with one of the main therapeutics used to prevent seizures , a @ @ @ @ @ @ @ that if they ’ re taken continuously , they lose their efficacy .
( Long-term use can also lead to addiction . )
Limiting their intake to days when people are at high risk for seizures could make them more effective , French says .
Seizure forecasts may also improve the efficacy of devices like NeuroPace , which monitors brain activity and delivers pulses of electricity when seizures are imminent to attempt to ward off the event , Rao notes .
For some people , however , seizure forecasts could prove more frustrating @ @ @ @ @ @ @ you that tomorrow , there ’ s a 90 percent chance of rain and you packed an umbrella and it doesn ’ t rain , you might be upset that you had to pack an umbrella—or conversely , you might be upset with me if I said there ’ s a 5 percent chance of rain tomorrow and you go outside in shorts and it rains , ” Rao says .
This dilemma is one of the reasons a prospective trial—in which participants are followed forward in time ( rather than doing an @ @ @ @ @ @ @ be beneficial , Rao adds .
Not only would such a study provide more robust evidence that seizure forecasting is indeed feasible , researchers would also be able to assess how participants actually use this information .
Only one prospective study of a seizure advisory system has been conducted to date : the NeuroVista trial , which demonstrated that it was possible to predict the likelihood of seizures minutes in advance .
One key limitation of Rao and Baud ’ s forecasting technique is that it requires a brain implant to record neural @ @ @ @ @ @ @ interictal epileptiform discharges used to generate these forecasts can be picked up with the less invasive measure of placing EEG electrodes just under the scalp ( subscalp EEG ) .
One of the next steps is to attempt to use this method to generate seizure forecasts as well .
Other groups are working on completely different measures to generate these kinds of seizure forecasts .
Philippa Karoly , a research fellow at the University of Melbourne in Australia , and her colleagues have found evidence that multiday cycles in heart rate are also @ @ @ @ @ @ @ ( These results have been posted onto medRxiv , a platform that publishes papers that have not yet been peer reviewed ) “ We believe that we can measure these underlying biological cycles from not just the brain , but also from the heart and from other aspects of physiology that are also affected by the same triggering factors that are driving the cycles in the brain , ” Karoly says .
The promise of seizure forecasts could transform clinical practice .
Still , key questions , such as why multiday cycles of @ @ @ @ @ @ @ , remain unsolved .
Scientists speculate that fluctuating hormones may play a role—or that they may have something to do with the underlying disruptions in the brain associated with epilepsy .
It is also possible that multiday rhythms , like circadian rhythms , are one aspect of how every brain functions .
“ That ’ s one very important question that has not been answered yet , ” Baud says .

Seizures are like storms in the brain—sudden bursts of abnormal electrical activity that can cause disturbances in movement, behavior, feelings and awareness. For people with epilepsy, not knowing when their next seizure will hit can be psychologically debilitating. Clinicians have no way of telling people with epilepsy whether a seizure will likely happen five minutes from now, five weeks from now or five months from now, says Vikram Rao, a neurologist at the University of California, San Francisco. “That leaves people in a state of looming uncertainty.”
Despite the apparent unpredictability of seizures, they may not actually be random events. Hints of cyclical patterns associated with epilepsy date back to ancient times, when people believed seizures were tied to the waxing and waning of the moon. While this particular link has yet to be definitively proven, scientists have pinpointed patterns in seizure-associated brain activity. Studies have shown that seizures are more likely during specific periods in the day, indicating an association with sleep-wake cycles, or circadian rhythms.
In 2018 Rao and his colleagues reported the discovery of long-term seizure-associated brain rhythms—most commonly in the 20- to 30-day range—which they dubbed “multidien” (multiday) rhythms. By examining these rhythms in brain activity, the group has now demonstrated that seizures can be forecast 24 hours in advance—and in some patients, up to three days prior. Their findings, published on December 17 in the Lancet Neurology, raise the possibility of eventually providing epilepsy patients with seizure forecasts that could predict the likelihood that one will occur days in advance.
In their latest study, Rao’s group conducted a retrospective analysis of data collected during a nine-year clinical trial with participants who had a Food and Drug Administration–approved, implanted neurostimulation device, NeuroPace, which uses a type of electroencephalograph (EEG) to monitor both seizures and interictal epileptiform discharges—pathological spikes in brain activity that occur between seizures. (One of the study’s authors, Thomas Tcheng, is the senior director of preclinical research at NeuroPace.)
Using data about the timing of interictal epileptiform discharges and past seizures, the team developed a computational model that estimated whether or not a patient was at risk of a seizure in the subsequent hours or days. Maxime Baud, an epileptologist at the University of Bern in Switzerland and a co-author of the study, explains that the researchers were not trying to predict when, exactly, the next seizure will happen but rather to identify the probability that a seizure would happen over a given time period—akin to how weather forecasts provide a percentage of the likelihood of rain or shine on a given day.
When the researchers compared their forecasts to the actual occurrence of seizures in 18 participants, they found that in 15 of them (83 percent), the algorithm performed better than chance at predicting seizures 24 hours in advance. In two of the patients (11 percent), it was able to forecast seizures up to three days in advance. To further validate the model, the team applied it to another, larger data set with 157 participants—this time, assessing whether the algorithm could forecast self-reported seizures, which are the primary tool used for assessment in the clinic. The researchers found it could forecast seizures over 24 hours in 103 participants (66 percent) and up to three days ahead in 61 (39 percent). In general, chances of a seizure were highest during periods when both circadian and multidien cycles of brain activity were near their peak.
“Prior work has been mostly focused on forecasting seconds to minutes to a few hours ahead of time. This group has built on the work with multidien cycles to [introduce] a multiday predictor,” says Hitten Zaveri, a professor of computational neurophysiology at Yale University, who was not involved in the research. “[The study] has clearly been done very well, with good data and good observations.”
Forecasting on these longer horizons could provide significant benefit for people with epilepsy. One of the biggest advantages is that it could help rectify deficiencies of existing treatments, says Jacqueline French, chief medical and innovation officer at the Epilepsy Foundation and a professor of neurology at New York University, who was not involved in this study. The major issue with one of the main therapeutics used to prevent seizures, a class of drugs called benzodiazepines, is that if they are taken continuously, they lose their efficacy. (Long-term use can also lead to addiction.) Limiting their intake to days when people are at high risk for seizures could make them more effective, French says. Seizure forecasts may also improve the efficacy of devices such as NeuroPace, which monitors brain activity and delivers pulses of electricity when seizures are imminent to attempt to ward off the event, Rao notes.
For some people, however, seizure forecasts could prove more frustrating than helpful. “If I told you that tomorrow, there’s a 90 percent chance of rain, and you packed an umbrella, and it doesn’t rain, you might be upset that you had to pack an umbrella. Or conversely, you might be upset with me if I said there’s a 5 percent chance of rain tomorrow, and you go outside in shorts, and it rains,” Rao says. This dilemma is one of the reasons a prospective trial—in which participants are followed forward in time (rather than doing an analysis of previously collected data)—would be beneficial, Rao adds. Not only would such a study provide more robust evidence that seizure forecasting is indeed feasible, researchers would also be able to assess how participants actually use this information. Only one prospective study of a seizure advisory system has been conducted to date: the NeuroVista trial, which demonstrated that it was possible to predict the likelihood of seizures minutes in advance.
One key limitation of Rao and Baud’s forecasting technique is that it requires a brain implant to record neural activity. But Baud contends that the interictal epileptiform discharges used to generate these forecasts can be picked up with the less invasive measure of placing EEG electrodes just under the scalp (subscalp EEG). One of the next steps is to attempt to use this method to generate seizure forecasts as well.
Other groups are working on completely different measures to generate these kinds of seizure forecasts. Philippa Karoly, a research fellow at the University of Melbourne in Australia, and her colleagues have found evidence that multiday cycles in heart rate are also associated with seizure occurrence in patients. (These results have been posted onto medRxiv, a platform that hosts papers that have not yet been peer reviewed.) “We believe that we can measure these underlying biological cycles from not just the brain but also from the heart and from other aspects of physiology that are also affected by the same triggering factors that are driving the cycles in the brain,” Karoly says.
The promise of seizure forecasts could transform clinical practice. Still, key questions, such as why multiday cycles of brain activity exist in people with epilepsy, remain unsolved. Scientists speculate that fluctuating hormones may play a role—or that they may have something to do with the underlying disruptions in the brain associated with epilepsy. It is also possible that multiday rhythms, like circadian rhythms, are one aspect of how every brain functions. “That’s one very important question that has not been answered yet,” Baud says.